Starring Slugger

16 Months Forget the couch!!

2011-12-04T22:03:00.001-08:00

...we're walking just fine all by ourselves.

Slugger

Real age: 16 months
Adj. age: 13 months
Weight: 21 lb. 2 oz.

Milestones: She's a walking machine!!! No longer wants baby food or purees, everything has to have substance or chewability. Holds and can drink from a sippee cup. Waves bye-bye and almost blows kisses (she brings her hand to her mouth and then forgets the rest). Can scribble on paper with a pen or crayong (we had no idea she knew how until the Easter Seals therapist was testing her skills). Oops. Starting to point when looking at a book instead of just flipping pages rapid-fire style. Gives kisses when asked (heart melting). Has developed three distinct dance moves (the head toss, the arm swing, and the knee-bending bop). She loves all her toys that plays songs. She'll press the buttons and then dance away.

Schedule: Still sleeping 10 pm to 8 am. Still taking two naps but they're shortening slightly in length and are not as consistent. Usually one around 11 am for 1.5 hours and one aruond 4 for 1.5-2 hrs).

Diet and Nutrition: We switched to cow milk without any problem. She definitely needs solid food as she can eat a whole meal and then tank 6 oz. of milk. We struggle to find foods that she wants to eat as she is starting to get picky. Even her favorites, she'll eagerly eat four or five bites and then she doesn't want it anymore. Like tofu and yogurt. Food that she will never get tired of: eggs (scrambled with no salt), breads (any kind), broccoli, cauliflower, zuchinni, rice, chicken. Peanut butter. cheerios. She looks like she's chewing but we suspect she's really just swallowing the small pieces whole. She only has two teeth. She still has a disgusting habit of eating anything off the ground, she especially loves hair. Man, the pressure to have clean floors.

Huge events: She started taking just a few steps every now and then but didn't really do much. Seemed perfectly happy to just crawl. We had family over the first weekend of November and it was a huge, crazy week. As soon as everyone left, it was like she was just waiting for things to calm down. That night, she just walked across the living room. It clicked and she just started walking back and forth. The next night, she was walking and turning and then walking back.

She also got her first haircut. Her bangs were getting so long and she learned to take out her hairbands which she would promptly toss in her mouth as a snack.

And after a pretty great year, she had a really rough week right after Thanksgiving. She was playing and go to close to a hibachi that had been used early. She burned her hands pretty bad. At first, she was in a lot of pain and it was just horrible for everyone to see. Thankfully, she fell asleep and when she woke up, she wasn't bothered at all. Unfortunately, her hands had blistered so we had to wrap her hands to protect them while they healed. She's been quite amicable, adapting well to her club hand. Then, she got very sick and developed a fever that just wouldn't go down. We're nervous parents who are constantly in touch with medical professionals so we know all the warning signs to look for and what they could mean. Nothing except the fever but it just wouldn't go down even with medicine. But then one night, her fever sailed up to 105 and we found ourselves racing to the ER. Her first visit to the hospital. She had to undergo numerous blood tests and X-ray and her tears made everyone sad. But she cheered right up, happily trying to lick her oxygen mask. All the nurses kept stopping by, completely charmed by her. As we walked out after a long sleepless night, she happily waved by to everyone in the ER.

We're so relieved that she survived everything and her little body is healing well. She's such a trouper although she has become way more whiny. I'm really hoping it is just because she sick. And I'm thankful for every day that we get to hug her and love her, all she has to do is flash her gummy smile and the sun just shines.

An update wouldn't be complete without pics. Here's pictures from her first hair cut and a photo of her bandaged hand, the "club."

13 Months Couch walking already!!

2011-12-04T04:18:00.001-08:00

Slugger

Real Age: 13 months
Adj. Age: 10 months

Milestones: Holds on to things and slowly cruises along. Still only two teeth on the bottom. No new words besides Dada and barking "woo woo" when she hears Charlie barking.

I'm writing this 3 months after the fact. Ack, I can't remember what she just started learning at that phase. Bad bad mommy. August was a big month for us. I started a new job that allows me to be home at night and on weekends, but it also meant that we had to find a babysitter a few days a week. What a stressful journey that was. I never realized how much timing plays into things as most of the home daycares just didn't have openings. We did manage to find a few qualified places but really lucked out when the mom of one of Slugger's friends said she was thinking about starting babysitting to supplement their house income. What a relief that was. We loved the mom, she's sweet and she's British. Scott jokingly requested that she sing Mary Poppins songs to Slugger everyday. We half-hoped Slugger would develop a British accent as well.

Slugger loved it there but as it worked out, another babysitter whom came highly recommended had an opening and our current babysitter found out she was...expecting her second baby!!! It truly felt like God was helping ease us through transitions and finding Slugger the perfect place. Slugger goes to her current sitter only a couple times a week but she LOVES it. She LOVES the other kids there. It's such a comfort to my heart when I pick her up to see that's she happy. We've been putting her in the church nursery and she can't wait to play with the other babies. Last week, we kept her out because she was sick and we didn't want the other babies to get sick. Slugger cried when we just walked by the nursery without leaving her there.

I'm going to post her 16 month update already but I wanted to share these photos that we took on the beach while Daddy was performing a wedding nearby.

The best birthday gift you could give...

2011-07-28T11:40:00.000-07:00

1 Year

365 days.

One year ago, Scott and I were in a hospital room....terrified...stunned..naive...and now, parents.

Our story is not completely unique. Search the internet and you find forums and letters from other parents who have lost multiples asking how to deal with birthdays. It does bring comfort to see other people have struggled with some of the emotions we are still trying to figure out.

Guilt. I think every new parent struggles with guilt. There are those moments when I’m hugging Slugger and my heart is filled with such love and such joy and I remember how long we waited and how much we hungered to start a family. And then my heart aches that my twins will feel like they’re not utterly and completely missed. I can’t explain how hard it is when you feel guilt over being happy and feel guilt for being sad. I can’t shake the feeling that I’m failing one or more of my daughters no matter how I feel.

As much as we’ve been yearning for this day, we have been dreading it even more. It’s a reminder that it would have been Allie’s and Rory’s 1st birthday. And this is one of the many huge milestones and events in their lives that we will not be able to share with them. We have so much to be thankful for. It has been a wonderful year full of blessings. But this first birthday will be a hard one. We had decided long ago to celebrate Slugger’s first birthday closer to her due date…so she’ll be more like a real 1 year old…with cake and all. We don’t know how we’ll feel on the girls’ actual birthday so we’re playing it by ear. And we’re giving ourselves space and grace to play it that way. We’re allowing ourselves the opportunity to grieve if that is where our hearts are…or to enjoy it for the beautiful summer day it is.

We’re going to honor the fact that today is Allie’s and Rory’s birthday. We won’t ever get to celebrate a birthday with them. We can’t scoop them up in our arms and kiss their cheeks. No cake smash photo sessions. No matching paper hats. We’re going to write cards to them to tell them how much their parents and their sister love and miss them. And we took time off (or tried to) to spend time with Slugger and each other.

And let’s not forget Slugger!!! We’ll be celebrating Slugger’s birthday in the fall, just for this year. So, please, no gifts for our little Slugster. She’s super blessed with more than she can play with. Seriously, she loves other babies so bring over some friends for her and maybe some of those toys can get some action. If you really want to give us a gift, do something kind today in honor of our two oldest girls. Out of something so painful, it would be amazing to see good things grow. Hold open a door for a stranger. Smile at that obnoxious coworker. Talk to that woman on the corner you’ve passed on the way to work every day for months. And if you find the opportunity to make a positive change…no matter, how small, do it!!! How awesome would that be to know that our girls helped inspire a little act of kindness. It would really be a ray of light in our world. So shine on!!!

Happy birthday to all my precious girls! To my angels, Allie, and, Rory, we were so blessed to have you even for just a short time. And to our Slugger, you are such an amazing child and you have filled our home with mess and laughter (both of which I couldn’t live without now). I love you!!!

Slugger 1 Year Birthday!!!

2011-07-28T03:22:00.001-07:00

Slugger:

Real Age: 1 year old

Adj. Aige: almost 9 months old

Weight: ~18.2 pounds

Height: ~28 inches

Milestones:

-can transfer object from one hand to other hand

-LOVES to stare in a mirror. So thankfully we don't have many full-length mirrors because she would be glued to it for hours

-can crawl and move to sitting easily

-pulls up to standing and "couch walks"

-can pull herself up on crib rail

-loves climbing stairs (but still tries to go down them headfirst)

-responds to her name

-will "fake laugh" if she's in a room with other people laughing and she feels left out

-pushes things away (like bottles and spoons) if she doesn't want them

-her first tooth has appeared-bottom front and center

-stranger anxiety has begun, only wants mommy and daddy...mainly mommy

-teething=crying and whining

Welcome to the teething era!!! Man, she has become a completely different child out of nowhere. I'm not going to lie, it's tough. Our usual mellow, sweet child is now grouchy and whining at the drop of the hat. It's so hard to know when she's in discomfort and not being able to take it completely away. We've tried all sorts of tricks but her favorite teether is my old license and credit card that she found. Now they're permanently in her toy bin.

Her favorite new "trick" is to make a clicking sound with her tongue against the roof of her mouth. Oh, she cracks herself up. Scott has this hare-brained idea that she's imitating the sound we make when we give her lots of smooches. Personally, I think it's wishful thinking but it does make it really sweet when she starts clicking away and we tell people "she's giving you kisses." She seems to know and has perfect timing, I almost start to believe.

She inherited some toys from her friends, HB and LP. One of the toys is this globe that sings the alphabet song when Slugger spins it. She was spinning it and the recorded vocie sang "h-i-j-k" and I swear that Slugger sang something that sounded exactly like "lllmmmmoooh." My jaw dropped. Was this pure coincidence or is she a complete genius and I should plan on her college graduation party being when she hits ten? I kept watching her but she never did it again but my fingers are crossed.

She's "couch cruising" and is still shaky on the legs but she has gotten a lot better and started to experiment with taking one hand or both hands off the couch.

She's become very attached to me...which I've been waiting for. But now, that it is here, it does make life much harder. She wants to be carried or held...by me. Honestly, I'm not sure why. I hug and love on her...but so does everyone else in her life...so I haven't figured out my appeal yet. But, I hug her harder when she clings to me and I'm enjoying this attachment for now because she might have slightly different feelings to me in about 15 years=)

[Uncle Steve was being a pain and kept throwing this cap over her head. But she could take it off]

[This is the first time I saw this happen. I put her down for her nap and was looking through a closet when I heard laughing and turned around to see this cute face staring at me.]

[I laugh every time I look at this screen shot of the baby video monitor. She and her nap buddy, Elmo, really are two peas in the pod]

[Yah, it's picture time. The monkey is back!!]

Want to see the first pictures she took with that monkey....travel back to September of last year!!

10 month Videos-Crawl, laugh, and slobber

2011-06-19T03:27:00.000-07:00

Her second time crawling (no camera the first time) with the help of Uncle John-John snatching her toy away).

She now loves to babble. She's got kind of a soft voice. She loves to say "da da da da." Scott's parents insist that she said "da da" when she saw Scott on the computer screen. But they said then she said "da da" again when Scott's sister was on the computer screen. Maybe "da da" is her word for the computer?

and now, the grand-daddy of them all. The cutest video I've yet to take. Slugger and her cousin. We met up at the beach but we also hung out with them in Kona a few hours before our plane took off. Slugger was just fascinated with Zylin, she is amazed by other kids. And Zylin decided to share a little love for his cousin. I think he thought I was saying "kiss her." So he did=)!!!

Kind of.

Warning: This might be the cutest video you have ever seen.

10 month update-Big Island Trip

2011-06-19T01:52:00.001-07:00

Slugger:
Real Age: 10 months and 2 weeks
Adj. Age: 7 months and 2 weeks
Weight: ~17 pounds
Height: ?

Milestones:
-can sit unassisted for short periods of time (not a lot of improvement there)
-passes toys and objects from one hand to to the other
-is starting to prefer her parents (FINALLY!)
-loves to talk in long run-on sentences "da da da da da da da da"
-crawls
-attempting to climb the stairs in our house
-is pulling herself up on lower things (only to faceplant)
-first tinge of stranger anxiety, looks like it's in our near future
-eating 2-3 baby food meals a day in addition to all the bottles

Happy Father's Day, Scott!!! You are such an amazing man in all you do. I am in love with the son you are to your parents, the friend you are to others (and myself), the husband I have, and the father you are to Slugger (and Allie and Rory). I wish I had the chance to take some father/daughter pictures this past week to go with this post. But I'm so happy we finally get to celebrate our first father's day together and we are so blessed to have many more for years to come.

This is our regular appointments
Speech Therapist-once a month
Physical Therapist- every other week
Public Nurse- once a month
Pediatrician-every 3 months
And we'll having a retina check-up in the next month.

Of all those, I really love her physical therapy. It has helped Slugger catch on to new skills much more quickly. Just 8 days ago, Slugger learned to crawl. She couldn't do it at all before. She planted her hands like they were stuck in concrete and kicked those legs...did pushups...did handstands...but those hands never moved. Last Saturday, one of her favorite uncles, John-John, came to visit and was trying to tempt her with a stuffed animal and she picked up a hand...put it down and then I think she realized how it worked. She crawled across the room to the toy. No problem!!! And that was that. She suddenly became very mobile in five minutes.

I had this misconception that I would have time...there would be a gradual learning process. That she would crawl 1 foot. The next day, maybe a foot and a half. Nope. Once she picked up how to move her hands, she was crawling everywhere. The next day, she crawled to our living room stairs and began tackling that first step. We found her behind our TV. One time, I got distracted and when I looked around, she had disappeared. I was mystified until I saw two little pale feet kicking out the bathroom door and there she was rolling herself in the bathroom mat. In the past week, she's completely mastered crawling and now she's not happy unless intent on standing up. Everything becomes a makeshift crutch to pull herself up to her feet with. One big problem is that she thinks she can stand on her own so she doesn't bother to hold onto anything and topples over straight as a board.

This past month, we took advantage of memorial day weekend and our days off to take her on her first trip ever. We went to the Big Island so my brother and sister could meet her for the first time. And my brother and his girlfriend had their baby boy on July 4th, just 3 weeks before the girls were born. I've never seen my nephew and I was so excited. It was an amazing trip. One thing we've learned this past year is that life is short and you never know when you have to say good-bye. My perception of what's important really has changed and I hope for the better. It was very important for us that Slugger sees her family and I wanted my siblings to see that's she's fine...she's great and they don't have to worry. I know it was so hard for them to not be here for everything.

The trip did have some hilarious highlights, that are so fun that I'm probably going to blog about them on my photography website soon. Look for that. A rodeo and the signs that tell you that you're on the Big Island. But the second day of our trip, my sister, Genesis, took us to lunch at her working place, Merriman's Restaurant in Waikoloa. She's been telling her coworkers all about Slugger and so she wanted them to be able to meet her too. Slugger was a little celebrity as Genesis took her around to meet all of the staff.

Then we drove to "69s" beach to meet my brother and his family. I don't think I need to explain how the beach got its name. It is pretty much what you think it might be=). Slugger went in the water for the third time in her life. She loved it but the sound of the waves along shore really spooked her. Check out her face!

Happy Father's Day, Scottie!!! We were a little short on chairs (which Jordan thoughtfully brought) so Scottie had to hold all the towels for everyone.

Here's Slugger getting ready for her swim. That bathing suit used to be her cousin, Lauren's bathing suit. It's neat to see things getting passed down.

And here is Slugger meeting her handsome cousin, Zylin. They must be family, they both love sticking their tongues out at each other. Oh, no, already the antics begin!

First time I got to see my first and only nephew, and I am in love. He's such a happy and content baby.

And this sight warms my heart. My baby brother holding my baby girl. Oh, I think Zylin is getting a little jealous. I don't think he knew what to make of Slugger.

He burst out laughing when she lost her balance and tipped over. Aunty Genesis was so quick to catch her though.

Cousins!!! I can't wait to see them grow up and become friends!

Jordan, Carolin, Zylin, and Slugger.

Scottie and I taking our turns with the babies.

Genesis, me, Jordan, Slugger, and Zylin.(just missing our older sister and we would have had a little reunion)

Check out the latest post of three recent videos. Crawling, jibber-jabbering, and getting a surprise.

9 Months Old-First Solid Foods

2011-05-21T15:53:00.000-07:00

Slugger:
Real Age: 9 months
Adj. Age: 6 months
Weight: 16 lb.
Height: 26 inches

Milestones:
-can sit unassisted for short periods of time
-on tummy, she can push herself up to hands and knees for a few seconds
-she will even push up to her hands and feet before her feet slip out from underneath her
-super ticklish
-can eat baby food pretty without any problems
-rotates and scoots backwards
-holds toys with both hands
-says syllabic run-on sentences "babababababa" (usually when tired and grouchy)

First, as a follow-up to the March For Babies event. Slugger even had a team in New York walking in her honor. My good friend from college, Yong, has been walking in the March of Dimes Walk for years now but now it has meaning. He called me one morning and asked if he and his group could walk for Slugger. We feel so loved. He sent me some pictures from the big walk in New York.

Here's Yong and his beautiful wife, Katie. We flew to New York for their wedding and Scott was their officiant. Now they're expecting and it is just a few more months before their baby arrives.

They carried that sign the entire walk. Yong said people were admiring the sign and cheering encouragment.

Easter was last month but here's some pictures of Slugger in her first Easter dress. She could not sit on her own yet so I had to do some photoshopping magic. If you're interested in seeing the process, I explained how I achieved the following photo on my photography blog here.

Slugger doesn't have stranger anxiety. So far, she's happy to see everyone. I love that about her but sometimes I do wish she was a little more excited to see me. She's thrilled when I walk in, but she's thrilled when anyone walks in. I'm compiling pictures of her with friends but this one is one of my faves. This is at church on a Sunday morning and Bob got to meet her for the first time. Oh, she just loved Bob. It was so cute. She just buried her head in his shoulder and smiled sweetly up at him the whole time.

The big event of turning 9 months and hitting those 6 month milestones was that we introduced her to solid food. I don't know why they call it "solid." It's more mushy gelatinous liquid.

We started off with rice cereal and have introduced a different food every 4 days to a week (to check to make sure there's no allergic reaction). Because Slugger has had dysphasia with swallowing, we had an Easter Seals therapist present the first time she had solids.

And here we go with the very first sample. Scott fed her while I held my camera in one hand and a video camera in the other hand. She wasn't real thrilled with it.

As first-time parents, we are so lucky. How many people get to have a therapist giving guidance on how to feed your baby?

Yum yum!

She did great with the food the first day but after that, she had no interest in it. Would not open her mouth at all. Her peds told me to give her something else to chew on and sneak in a spoonful of food whenever she happened to have her mouth open. It makes meal-time a long exhausting process just to get in 7-10 spoonfuls. But she's getting used to it and has started to open her mouth on her own.

So far, we're making our own baby food. It's pretty easy and she doesn't eat enough to warrant opening a whole jar of baby food. We got a magic bullet for our wedding. That thing is PERFECT for pureeing baby food.

Carrots-Likes

Bananas-Surprising not a fan

Avocado-Likes

Sweet Potato-hmm, jury is out. She eats it but spits it out (that might be her new thing though)

Lastly, here are some pics from our quick trip to Hoomaluhia Gardens. We took her there with her bff, LW, but the bugs were eating them alive so we had to run for the car.

I keep forgetting that she's really 9 months, not 6. Oops! I always think of her by her adjusted age.

2011 March For Babies

2011-04-25T13:34:00.000-07:00

Happy Easter everyone!!!

This past Easter weekend was a big one. It's one of the two busiest weekends at Scott's workplace so we had big services Friday night and Sunday morning. And Saturday morning, we walked as a family in the 2011 March for Babies Walk held by the March of Dimes Organization.

The night before we were so tired but I was real bummed that we hadn't made T-shirts in preparation for the walk. Scott said it was no big deal but I just knew I would regret not having at least something for Slugger. I searched our bookshelves and managed to find an old package of print it yourself Iron-on transfer paper. So, I stayed up super late and designed a little onesie for Slugger to wear during the walk. I think it turned out awesome and was worth getting just 4 hours sleep.

The walk started at Kapiolani Park so we parked at the Honolulu Zoo parking lot and walked over. Man, the pay rate for parking sure has jumped up a lot. It was incredible to see how many people were at this event. There were families unloading their vans all in matching T-shirts, kids of all ages rolling in their strollers. I have to admit, I choked up when I read parents wearing T-shirts with a preemie picture and name on it and holding the hands of strong, healthy grown kids. Amazing to see that these kids running around started off so small and sick.

Slugger had her own proud statement on the back of her onesie. [click on it to see large version with list of our wonderful sponsors]

Slugger chilling in her carseat on the way to Kapiolani Park. She didn't seem to notice that we woke her up 3 hours earlier than usual. She doesn't wear a watch so she just has to take our word for it.

Uncle John carrying Slugger as we unload in the zoo parking lot.

Here's a close-up of Slugger's onesie design with her birth statistics and a list thanking all the people who donated to her walk.

This is her first ride in a jogging stroller. We borrowed this one from Liz and Mikey. Wow, these things run so smoothly compared to a regular stroller. Yowzahs!

Here's a close-up view of the front of her onesie design. We meant to focus on the celebration of Slugger so we didn't get too sad, but we just couldn't do it without remembering our twinnies.

As we walked into Kapiolani Park, they were having a huge warm-up exercise class led by Gilad. Oh, I love him. Scott and I were in a phase where we were taping his Bodies In Motion show and exercising to it. He looks really good in person. Hubba hubba.

Crissy and Todd watched Slugger so I could run up closer to get pictures of Gilad.

Then we headed to the Kaiser tent and Slugger got to hang with one of her favorite NICU aunties, Gina. Look at Slugger beaming at Gina.

This little girl is sunblocked up. She has a UV protection hat. And that's an umbrella I brought along that I held over her whenever we didn't have shade.

We got so comfortable checking in to the Kaiser tent, Scott even made himself a plate of food and began chowing down, that we missed the start of the walk. There was a huge crowd by the start line when we looked so we didn't even budge, but it turns out that the crowd was the kiddie crowd that would walk a truncated route around the park. Um, the other members of Team Slugger thought the truncated route sounded ideal, especially John-John who couldn't find sneakers so was wearing slippers. But, unfortunately, they're with me. I felt like we told people we were doing a 5 mile walk, so we should be doing a 5 mile walk. I love our friends. So, we set off on the full 5 mile route which starts at Kapiolani Park and turns around once you hit Ala Moana Beach Park.

Since we started so late after everyone else, I seriously think we were the last ones in the whole walk. Amazingly, we ran into Davidson and Candace who go to our church and were walking with their two fraternal twin boys, G and G. So Team Slugger and Team GG united. The first half of the walk was great. The rising sun was low enough that we were continuously in the shade from the buildings. However, on the way back, it was blazing hot and the sun was beating down on us. We also ran into Hope Chapel's Women's Ministry Pastor Tami T. and her husband Mike in the walk. Tami told us that they were walking for Slugger too!!! So sweet!

Here's Team Slugger and Team GG finishing up the last half of the walk. Notice the hidden babies as we were constructing all sorts of tents to protect them from the sun.

But we finished!!!

Longs Drug was a huge sponsor of the event and there was all sorts of swag that we could stuff into our goodie bags at the end. I was real excited about my chocolate pudding cup. Yum!!

We collapsed under the Kaiser tent and rested our sore feet. And tried to take a team picture before we left.

I brought my camera and I set up the shot. Got the focus, the exposure in Manual mode all down. Here's my test shot. Crissy and Todd are such goofs=)

Then I asked a lady nearby if she could take our picture. My dSLR looks intimidating but I had it all configured from my test shot so I told her she just had to stand where I pointed, point the camera at us, and click the button.

I do not want to make fun of her. But, it just goes to show you how cameras have changed so much that they have changed the common experience. I huddled into the team slugger group and the lady held the camera up and then said "wait, where's the picture?" She was looking for a live-view picture on the LCD screen that we've all become accustomed to because of digital point and shoots. I don't have live view on my rebel so I told her "you're going to have to look through the viewfinder." She still didn't seem to understand but she started clicking away. And this is what she got.

Oh, this made me laugh when I scrolled through. She took about 10 tries and thankfully, the very last one came out. I think it's so funny that people don't know about or how to use the viewfinder anymore. We've been spoiled by these fancy cameras and camera phones.

[From left to right]Scott, me, John-John "rubbah slippahs brah," Todd, and Crissy "listened to a sports game on her earphones the whole walk and ignored us=)"

PS. We were blessed to find that we all got Kaiser shirts since we were signed up under the Kaiser Team. But I opted to wear the shirt that I was already wearing. Look, I just happened to choose the right color that morning. I fit right in.

[Click on picture below to see how much money we raised. + a pic of Slugger in her cute Easter dress]

Slugger's Visit to the Cardiologist

2011-04-16T14:04:00.000-07:00

Slugger and Astro had echos of their heart done the day they were born and everything looked A-okay. But right before Slugger's discharge from the NICU, they detected a heart murmur which led them to discover she had a small hole in the septum (wall) between her left and right atrium chambers. ASD, atrial septum defect. We were told to watch her and they would check close to her first year. Dr. S. told us that it was very likely the hole would close on it's own. So, we've been waiting and waiting and we finally got to take her in for her follow-up with the cardiologist. This is Slugger pre-appointment. She's calming herself with a few good chomps on the thumb. The doctor listened to her chest with a stethoscope and told us it sounded good. Stethoscope? That's it? We've been waiting for months, where's that ultrasound machine you call an echocardiogram? Well, apparently, they can't usually do echos on such small infants because the babies won't lie still for them. They have to sedate the babies which, of course, we don't want to do. The doctor said "well, maybe we can try..." YES!!! I'll keep her still. So they took us into that dreaded room. That part wasn't fun. The room that I was in when a man in a white coat with kind eyes told me that my little girl was dying. That room that I still had to spend hours in every other week while they watched Rory grow and develop. I have every inch of the wallpaper border memorized, every bulletin posted on the wall. It was weird to return to that room. That room was also my quality time with Rory. They barely scanned Astro and Slugger. Instead, it was just 45 mintues of doing nothing but watching Rory jump around, getting elbowed in the head by some sister (usually Slugger). Slugger had to lie down for her echo so I snuggled up beside her to try to keep her still. We gave her the pacifier (which we usually save for the emergency public breakdowns) and I let her watch videos on my phone. Sadly, the only thing I had was the movie Avatar which came with the phone. I don't even like the movie. I just replayed the parts that had the forest scene with glow-in the dark plants. Surprisingly, she watched it calmly. Slugger did so good. Yes, she might have pulled on the probes a little and taken one off. Yes, she tried to take over the ultrasound wand drifting over her chest, grabbing it and pushing the tech's hand away. But after her curiousity wore off, she calmly lay there...even falling asleep for a bit. That's my girl!!! Just as the tech was finishing, Slugger woke up and firmly pushed the wand away. She knew time was up. Excuse the grainy pictures, the room is kept very dark.

The doctor came in to talk to us afterward and Scott said as he saw the doctor coming towards us "It's never a good sign when they're bringing a model of a heart with them."

Too true. Bad news: the hole is still there.

The good news: It's tiny small. There's still a chance that it may close up on it's own. Usually, if they're going to close up, they'll do so by 16-18 months of age. It is also so small that it's not affecting her. There's no enlargement of any chambers, no leakage, her lungs are clear. Even if it never closes up, as long as it doesn't get larger, we still may not ever have to address it. The doctor said she can play sports, she can go on to have children of her own.

So, we'll check again in another year and half. The doctor insisted that since she's so young that it may close up, he can't even really truly diagnose it as a heart defect yet. He clearly said repeatedly to treat her normal. I don't know what meant exactly in reference to a 9 month old baby. She's not ordinary...she's extraordinary.

Here's baby and daddy post-appt. It was a long appt.

But Slugger cheered up immediately when we stopped by the NICU and saw her aunties: Alex, Amy, Aileen, and Dina. Robin, Dr. Chiu, and Laura came outside after the picture was taken.

Read how numerous organizations have become household names for our family in this blog entry and why we are so excited to be able to give by participating in the March For Babies.

And please visit our March of Dimes pages to support us in our walk to battle birth defects, premature birth, and infant mortality.

Scott's March For Babies Pledge Site

It means something now

2011-04-16T13:07:00.001-07:00

In spring, I received an email from our friends' little girl, Kaiulani, asking for pledges to her Jump Rope For Heart. I participated in Jump Rope For Heart when I was a kid, but I kind of missed the point of it. I was a first grader at Haili Christian School in Hilo on the Big Island. We were sent home with the forms to raise pledges...asking adults we knew to pledge so much money for every minute we would jump rope. Then one day, we all went to the gym and we took turns jumping rope. I rocked at jumping rope, I sucked at raising money. I didn't really get the whole purpose of trying to raise money. I felt so bad for all the kids in line waiting to use my jump rope that I jumped for maybe a minute and then just stopped and handed the rope to the next kid. Hey, I was six...I didn't know. Now, I'm way older. And it was so easy to give online to Kaiulani's sponsor page. A few clicks and I was sent a confirmation email. Seriously, it didn't dawn on me until afterward that the American Heart Association was raising money for families like me. I don't know. When I heard heart research, I just thought of heart disease that affected elderly people. It didn't run in my family so I didn't really have a personal connection. I never knew about the children who are born with heart defects. 1 in 100 babies are born with a congenital heart defect. This little girl, Kaiulani, is helping raise money that is educating scientists and doctors on ways to help my baby girls. By doing that, Kaiulani has given me an amazing gift.

A month later, on my usual drives through the McDonald's fast food lane, I looked down and saw that usual little box asking for money for the Ronald McDonald Home Charities. Wait, that applies to my family too. When we were faced with moving to San Diego if Rory was a candidate for heart surgery, we were told to look for a place to stay. Treatment would have taken up to a year and we thought at the time that we would have one little baby in the hospital and two at home with us. We were freaked out at the idea of having to find a place to stay so far from home. We were looking at applying to stay at the Ronald McDonald House.

I only knew Easter Seals because of their telethons. Now I know them as a wonderful organization committed to serving those with disabilities and working to help prevent it. They send physical and speech therapists to work month with Slugger in our home free of charge.

Lastly, there's the March of Dimes. They are committed to battling birth defects, premature births, and infant mortality. Their researched helped the development of Surfactant. Slugger's premature lungs were not ready for breathing. When she exhaled and they collapsed, the walls of the lungs would stick to each other and she wouldn't have been able to inhale, expanding those air sacs. She was given surfactant which acts as a lubricant across the lungs to keep air sacs open and minimize scarring. They also have a wonderful online support group for people with sick children or who have lost children. I spent a lot of time on it while Slugger was in the NICU.

In one week, on Saturday, April 23rd, Scott, Slugger and I will be walking in the March of Dimes "March For Babies." We'll be walking 5 miles at Kapiolani Park to raise money for the March of Dimes.

My college friend, Yong, has done the March of Dimes walk annually for years now. He called me up last week and said he wants to walk for Slugger this year. For parents of preemies, it's an honor to put your child's name, gestational age at birth, and birth weight on your shirt for all to see. This year, we'll be celebrating Slugger. Sadly, there are a lot of parents who have shirts that are in honor of preemies who didn't make it (which is why this walk is so important). It's too soon for us to walk for the twins, we're not ready for that. But we can focus on the positive, and walk for Slugger. And next year, we hope to be walk for all our girls.

We still haven't hit our goals YET, but I know we will. If you would like to pledge to our walk, please visit our pages

Scott's Pledge Site

8 Months Old Twirling her hair while she waits to grow

2011-04-07T12:52:00.000-07:00

Slugger Real Age: 8 months Adj. Age: 5 months Weight: 15 lb. 0 oz. Milestones: -favorite thing to do while eating is to twirl her hair. If she can reach, she'll use both hands the whole time. -loves LOVES loves her exersaucer (that saucer went from TJ to Eden and now to Slugger) -great hand coordination as she reaches for and moves objects -loves to cuddle -either she's giving people kisses or exploring whether cheeks and jawlines produce milk -no stranger anxiety yet, she loves attention from anybody -sometimes starting to lean when she wants to go to somebody, and turning away when she doesn't Severe nausea made pregnancy last year pretty miserable but I really did love being pregnant. Strangers would treat you just a little bit more nicely, jump up to give you a chair or carry things for you. Open doors for you. Having a baby, and a cute baby at that, opens a totally different world. People smile at you as they pass you in the grocery aisle. You start up conversations with complete strangers in restaurants who also have their babies babbling away at the table. You exchange information like baby's ages and names. Babies just make people smile. I wish it was the way we all acted regardless of circumstance. After learning to roll, Slugger has kind of stalled in development this month. I'm hoping she's just gaining strength and gearing up to work on sitting and crawling. Fingers crossed. She's also in love with her exersaucer. I thought it might be too early but she can stay in that thing forever. We have to make it a point to take her out so she can get tummy time and work on her arm strength. She's a talker and loud. Sometimes, she seems to be just singing to herself. The most awesome thing that we love in this new stage is that she's starting to cuddle. She was never a baby that would fall asleep on you. She did it as a newborn but then dropped it like a bad habit. Even if she was sleeping, if you tried to hold her against your shoulder, her head would spring up and her eyes would be wide open trying to catch the action. Now, she will sometimes put her head on your shoulder and she talks to herself. I never want to get up off the couch when she's willing to snuggle. Sigh, happy heart.

She had her first trip into the ocean. My friend Kristina came with me and we drove forever to Ko Olina Lagoons. I thought that place is always sunny and hot and should be warm enough for Slugger. But that day had high wind advisory so it was kind of cold. Slugger and I lathered up with sunscreen. Slugger was sporting a rash guard from Uncle John and wearing a UV hat. She loved the water ,although the poor thing made sour faces when she got salt water in her mouth.

The scary part was when I was rinsing her off in the shower. She got so cold and I had the hardest time warming her up. Her entire feet and hands were so blue, all the way up to her ankles and wrists. I had to screw the fear of UV radiation and place her right in the sun as I toweled her off briskly. Thanks to Leena for giving me the tip to take jug of hot water with me to bathe her in and to keep her towel warm.

Slugger also went to her one of her besties, LP, 's first birthday party. Here is Slugger right outside the jumpie castle.

Here is Slugger when she realized that no one was going to take her in the jumpee castle.

We also spent some quality time with the family, especially the grandparents. We went out to dinner with Scott's family to try to celebrate Slugger's Grandpa Pat's birthday (we're going to have a second try at a real birthday dinner). Here's Slugger with Papa (Scott's grandpa).

Here's Slugger with Uncle Stanton and Ma (Scott's grandma).

For a week, Slugger went through a phase where she would suck her lips in and I called it her "grandma" face.

Thank goodness, that phase is over.

In just 16 days, Scott, Slugger, and I will be walking in the March Of Dimes walk in support of raising money to fund research into premature babies. I'll talk more about this in an upcoming post. I would really appreciate any contributions (great or small). It's our first time doing this walk of course and we're not sure what goals we have, but we certainly want to aim big.

Go to our March of Dimes page to donate.

Prayer Requests:

-Able to hit our goal for raising pledge money for the March of Dimes walk

-Slugger has her appt with the pediatric cardiologist next Friday. We'll be able to check on her heart defect. We're praying for the best news, that the hole has closed up and her heart murmur is gone.

It's been one year since....

2011-03-18T05:16:00.000-07:00

...we found out we were having twins. Little did we know.

Scott and I were talking about couples and that first ultrasound and I started thinking about ours. It's hard because it's such an amazing feeling and there's such elation, especially our first ultrasound. That's when we learned we were having twins. One of the identical twins always hid behind the other one so it would be a month more before we would see all three. I always look at those pics and wonder which twin we were seeing. If I were to hazard a guess, I would say Allison just because of the positioning. It was literally one of the best days of our lives, and yet now I am reluctant to think about it because it reminds me that such a beautiful start had a different ending. Still, it was a beautiful and amazing day.

I'm glad we're such huge journal addicts. So much of Slugger's journey and her sisters' journeys are documented. Here's my thoughts that I wrote a year ago on March 15th, 2010.

March 15, 2010
This morning, Scott and I went to the first ultrasound. Scott is soo good, he woke up extra early and was doing his devotions. Granted, I feel sick and tired, but I had this thought, I hope his faith gets us brownie points.

The nurse at the IVF clinic who loves Scott practically giggled when she saw him in the hallway as we walked to our exam room. She hugged him and she hugged me too, but I think I was the afterthought.The doctor came in and sat down and began the exam. He had the ultrasound machine facing him so we couldn't see and I saw him just staring at the screen, and he was clicking some button and I thought....OMG, he can't even find a sac. It's empty. I was already starting to cry, not because I was that certain it was bad, but just because the emotions of the moment were so overwhelming. I realized how critical the next few minutes were going to be in our lives.

Then I heard the nurse say "That's a positive, right, doctor?" And I saw him nod. Oh, the relief. He turned the machine to us and I saw two circles. My thorough education at google medical school, I realized that there were two sacs. Oh, I had thought we might have had two begin but one didn't make it which would explain why my HCG level went from above to just normal for a single pregnancy. He showed me the right and showed us the beautiful flicker of the heartbeat. He's so experienced at this. Tell me the good news, and then break it to us gently that we had a second one but it didn't make it.

Then, he moves the scan to the second circle and says "here's the second pregnancy and right there..." and I saw another flickr.

Two!!! Two babies. It was awesome. Scott leaned forward and we both were so shocked...we're having two. I said "really? I thought we were just having one...my hcg levels were not high enough for two." And the nurse nodded and said "yah, you're right. You're absolutely right." We didn't have the shocking high levels of HCG that you would expect in twins, but there they were, two little babies with hearts clearly beating.

Scott had his videocamera so he taped the screen for a couple seconds although they printed out pictures anyway. Both babies are measuring 6w6d, perfect.It's awesome! it's like we just found out we're pregnant. This is the joy, that "aha" moment that we didn't really have when we found out we're pregnant. We kept looking at our ultrasound pictures...seeing two little blobs.

The end

Slugger, that was the first time we got to see you and your sisters. It was the most beautiful sight, absolutely beautiful.

Another Baby B like mine

2011-03-18T05:01:00.000-07:00

Next, we’ll be scheduling an appointment with Slugger's cardiologist. That’s a big one. That’s the one that I’ve been waiting for this whole time. After all we went through with Rory, I’m especially nervous about Slugger’s heart defect. Even just recently, I was captivated by that high school basketball player passed away after scoring the winning basket because of an enlarged heart. Even if Slugger seems fine now. Are we going to have to worry her whole lifetime? Are we going to have to keep her from playing sports or doing strenuous activities to keep her safe?

There’s a couple whose blog I followed while trying to become pregnant. They became pregnant just a week behind me and Scott. I read along as they went to the doctor’s appointment and were shocked to find they were having triplets. I remember thinking “Wow, that’s crazy.” Little did I know that just a few weeks later, Scott and I would be having our own “WHAT?” ultrasound. I even exchanged some emails with them. Our stories were just shockingly similar. We both did IVF. We both had a split resulting in identical twins and a fraternal twin. I would find out that we were having three girls. They found out they were having three boys. When the girls were born shockingly early and we lost Rory and Allison, it was painful to see any reminders of triplets. I stopped reading blogs but I kept this particular blog in my reader although it was difficult to see as their pregnancy went to 34 weeks (amazing for a triplet pregnancy). It was hard for me to see what I wanted my pregnancy to be like. I thought that I would unfollow once their boys were born.

But their birth story brought about another commonality. My Baby B, Rory, my identical twin had a heart defect stemming from a complete blocked aortic valve. After birth, their Baby B, Linus, also one of their identical twins, was found to have a congenital heart defect, stemming from a 90% blocked valve. He has a lot of things going for him that Rory didn’t. He was born later and bigger. He had partial flow through the valve. They were able to use a less invasive balloon catheter procedures to try to open the flow. He’s had this procedure several times and been hospitalized several times but he’s also been able to go home.

It's been conflicting emotions for me. Relief and amazement to see this little baby go home so strong like his brothers. But also jealousy that our stories are so similiar but, yet, sadly so different. Why couldn’t this have been my Rory? How come I couldn’t take my Rory home and see her grow and gain weight. How come I didn't get to see her smile?. I never got to hug her, she was too tiny to just wrap my arms around. Mixed emotions and yet I was riveted to Linus and his brothers' story. I've faithfully watched their family through their blog. And watching his journey has hammered home the reality of raising a baby with heart problems. It was one thing when the doctors first outlined what to expect if Rory had been able to go through treatment in San Diego. It’s another thing to see what it looks like. To see what your baby will look like in the hospital bed. To know that they're struggling to breathe as fluid bulds up in their lungs. Their bodies tiring out. What your baby will have to endure. Watching sweet-faced little Linus throughout his treatments has been tough. The damage to his heart has been significant and last week, they blogged that he had to go through open heart surgery. Remember that he is just a week behind Slugger. He's still so young and small.

Linus does look a bit different from my little hapa Asian baby girls. But his little chubby arms and legs remind me of Slugger. So, when I see him in the hospital bed with wires and tubes…my heart breaks and I’m seeing Slugger (and Rory) in his place). I hate when Slugger cries when she gets a shot. I can't imagine seeing her go into surgery . The last update was that he is suffering complications after his surgery. I need for him to be okay. I need for him to pull through and get stronger and healthier. I have a hard time asking for prayers because I feel it's been a year of only doing that but it's all I can ask for today. Pray for Linus.

7.5 Months Old

2011-03-18T04:35:00.001-07:00

Slugger
Real Age: 7 months 2 weeks old
Adj. Age: 4 months 2 weeks old

Weight: 14 lb.
Milestones:
-Rolls back to front easily
-Rolls stomach to back occasionally
-starting to prefer standing assisted rather than sitting
-reaches for and grabs objects
-Likes to rub her hair and ear when she eats
-bites anything she can put in her mouth
-now giggles in addition to laughing, I think her neck is ticklish
-does great on tummy time
-really seems to love reading books, she stares at the bright colors and illustrations

Slugger had her first tsunami warning and she slept through the whole thing. She’s been through enough, natural disasters don’t phase her. I’m working overnight which is hard on the body but great for motherhood. I get to put her down for the night and leave immediately for work and I get home in the morning just as she’s waking up for her breakfast. It’s a hard shift but it’s awesome to see her wake up in the morning and she rewards me with a smile every time she sees me peeking over her crib.

I can’t believe how fortunate we are that she’s remained healthy. One of the blogs I faithfully follow has quadruplets born a few months before Slugger. They came down with RSV for the 2nd time this winter and one of the quads ended up in the hospital. Thankfully, he’s out and all the babies are recovered. We are slowly introducing Slugger into our regular routine but faithfully armed with sanitizer and firm requests for everyone around us to wash their hands. We have such amazing friends. We usually don’t have to ask. Everyone immediately heads for a sink the minute Slugger comes near. Slugger is starting to recognize strangers. So, we’re trying to make sure she’s around our friends and family as much as possible. We meant to take her to church in March but it’s been too hard now that I am sleeping during the days.

Last night, we took her to Ignite’s bowling at K-Bay Lanes. It hit me that the last time I went bowling was at the very same lanes, but Slugger was still in the hospital at the time. Now she’s home with us. She’s such a happy baby. She has a small bump on top of her head that I believe was a cyst. Her pediatrician agreed with us but wanted to send us to a dermatologist because cysts aren’t very common in such young babies. First thing the dermatologist asked us as Slugger smiled and laughed just looking at him “Is she always like this?” Yup. “Wow, she’s a really happy baby.” Yes she is!!! He went on to examine her head and told us that the cyst probably arose harmlessly from her head gear putting pressure on her skin. It’s nothing to worry about. I brought up these tiny skin bumps on her forearms that I swear just popped up the last couple of months. I was surprised when he asked “Did she have IV or transfusions in the hospital?” She had both. He says the tiny bumps are just scar tissue from that. Again, nothing to worry about. It was such a relief and I walked out of that appointment feeling like I could breathe again.

And what you really are here for: Pics of Slugger. here she is today with today's current weight. She's sporting her St. Patty's green and she is part Irish (no thanks to Scott). I remembered to include her monkey buddy. he's wearing her preemie hat and diaper.

Some pictures from this past week in our living room.

She definitely has Scott's eyes and mouth. But my looooong eyelashes!!!

She also sneezes a lot, just like me. Uh-oh.

And she's in her drooly stage. I call her drooly julie.

Here's a stop action of her turning over. She can do it both ways but she almost always does it just one direction.

Some pics with daddy in our third bedroom where I love the light.

I'm tired...roll over

2011-03-02T01:17:00.000-08:00

What a day!!! An awesome awesome day. Ever since, Slugger hit 3 months adjusted, I've been telling her that I want her to roll over. That was our goal for the month. Scott and I have kind of a competitive bet to see who would be with her when she finally blasted that milestone. She's been getting so close but always gets stuck. This morning, I was late meeting someone because I spent 20 minutes videotaping slugger thinking she was finally going to roll over but she never quite made it the entire way.

Later, I was trying to get ready to go to the library and I had to run outside to hang the laundry. I put her down on the rug and when I came in, I was shocked to find her having her own little tummy time. She rolled over for the first time and no one was there to see it. I was so excited and so bummed at the same time. I busted out my camera to try to capture it again but she just stared at me. I went to the kitchen and when I came back, she was on her tummy again. She rolled over...a second time...and no one saw it...AGAIN.

So, I got so frustrated that I put her on her back again and just camped out. I tried to encourage her with a little rolling song. Never mind my singing and my loud obnoxious yelling at the end (might help to lower the volume).

Get ready for a roller coaster ride.

Slugger 6.5 months yelling to herself

2011-02-24T16:24:00.000-08:00

Slugger:
Almost 7 months old
3 months 3 weeks adjusted
Milestones:
-can reach out to things in front of her and grab them
-so close to rolling from back to stomach
-sitting up much better with assistance (both hands)
-has officially dipped her legs in the Pacific Ocean

How did our family celebrate our first Valentine's Day? Apart=(

I am officially back to work (boo boo) and am working the night shift. Scott had Valentine's day off from the church and was called in to be an extra for Hawaii 5-0. Yes, I think he's getting bit by the bug. So, the grandparents had the exciting fun of watching Slugger for the day.

But we did get to celebrate Valentine's the weekend before at Ignite's Valentine's Dinner. It was a super cute party with karaoke and `ono food, and even a photo booth. I loved these photos taken by Arthur Wong. They even put the creative touches of the prom-like photo stamp.

We had a lot of people trying to get Slugger to smile but I think it just confused her so she really wouldn't smile. She just stared at everyone making a commotion behind the camera.

A big developmental milestone that Slugger just achieved this week is being able to reach for things in front of her. Before, she would grab objects if they were to her side and already somewhat near her hands already. Now, she has started to move her hands in front of her and can purposely reach for something in front of her. She seems to love this new development. When she's on the changing table, she now uses her left hand to grip the wooden side and she raises her right fist up straight in the air at me. I don't quite know why she's doing it but she loves doing it. I've tried to capture it on my camera.

It's blurry because as soon as I bust out my cell phone she gets all excited and starts dancing.

I've been trying to meet up with another mommy friend every Tuesday for a walk around Kailua Beach. I really want to invest in a jogging stroller soon but I'm still doing my research on the best for my money. We've been blessed with great weather on our walking days. But it's always important to protect your baby from the UV rays even in the shade. I finally found a hat that Slugger can wear without losing it every 3 seconds.

My goal this past weekend was to take her swimming in a pool or in the ocean. But the island was under flash flood warning for the days I had free. Of course. Still, I brought along a bathing suit from her friend, Lexie, on the chance that it wasn't too cold for a dip. It wasn't cold but it wasn't too warm so I just dipped her legs into the ocean and tried to gauge her reaction. There wasn't really any reaction. She was past the time for her naptime so she was in a bit of a zone. No smiles. No laughing. We'll have to try again when she's a little more awake.

Our day at the beach had a fun ending. After our walk, I took Slugger back to the car to change her on the front passenger seat. As I picked her up and closed the door, I locked it and then realized I had left my keys in the car. I had to call Scott, who was gracious enough to agree to drive down to the beach with my spare. While I was waiting, I took Slugger down to the water and then came back and waited by the car. When Scott arrived, he walked up to my driver side door and I yelled out "No, my keys are on the seat on the other side."

Scott looked up and with a big dramatic motion, he opened up the driver side door. Apparently, that door had been unlocked the whole time. Ah, poor Scottie. How does he put up with me? I convinced him we were meant to have a little date afternoon together. So we walked to Island Snow for shave ice. Slugger kept her eyes fixated on my root beer shave ice. Scott, who can't say no, was trying to convince me to let her try a little bit. Crazy!!! No way!!! I hope he was kidding.

She's not a quiet little girl. She's smiley and has a crazy loud laugh. And now she just likes to yell. I was in the kitchen washing dishes and I hear her just yelling/talking. She's not mad, she's not upset. She's just talking but now she's talking at a very loud volume. I try and try to get it on videotape but she always stops as soon as she sees me sneaking in the room.

Slugger 6.5 months (3.5 months corrected)

2011-02-18T12:43:00.000-08:00

Slugger
Age: 6 months 3 weeks old
corrected age: 3 months 2.5 weeks
Height: 24.5" long
Weight: 13 lb 10 oz at last weigh-in
Milestones:
-rolling from back to side and hanging out there
-talking and making noises with mouth closed
-listening to herself talk
-drooling and I swear I hear her spitting sometimes
-sleeping for 9-11 hours at night
-enjoys tummy time for at least 5 minutes now
-sucking on her fingers
-taking her daytime naps in her crib

I can't believe it's been half a year since that life-changing day at the end of July. We have to start planning for her first birthday already!!!! Because she has passed the 6 month mark, we have finished a brunt of her doctor's appointments. She had her last RSV shot followed by the flu shot and her 6 month vaccinations. Poor thing, 6 needle pokes in 2 days. She didn't know what was coming. She loves talking to people and she was laughing and cooing at the nurse holding the needle. How do you tell a baby what's coming? =( But, with flu season over, no more RSV shots until next year (she should still be qualified to receive them).

We had a follow up swallow test to see if she's become more coordinated with eating. She has to drink a barium solution while they X-ray her throat and watch it on this little TV.

[Pic below: the X-ray machine. Slugger and I sit in that chair while I fed her the barium solution in the dark and the machine runs. The doctors and Scott are behind a glass partition watching it on the X-ray video]

[Photo below: Family pic after the X-ray swallow test. I'm wearing the apron shield. Thanks to reading blogs and reading about another family going through a swallow test...I thought to ask this time for a shield to put around Casey's waist during the X-ray]
She showed some progress. She swallowed the thickened solution well but when we transitioned to an unthickened solution, she started coughing immediately. No more swallow test. We're going to keep thickening her milk until she's at least 6 months corrected. So another 3 months.

[Photo Below: sporting a cute onesie her Auntie Nalani brought from the Big Island]

[Photo below: I love her expression. I think she was telling me something at the time]

She's starting to sleep a lot more now. I hope it's just a sign of a growth spurt. Since she was born with tiny heart defect, fatigue is a warning sign. That's real hard to watch in babies who sleep all the time. We were feeding here every 3-4 hours during the day and 4-5 at night. But about two weeks ago, I forgot to set my alarm and woke up at 6 in the morning to find that Slugger was still sleeping away. She went 8 hours between meals!!! The next night, instead of waking her up, I let her wake up when she wanted and it was 8 hours again!!! Since then, she's been averaging 9-11 hours at night. It's AMAZING!!! I feel like a whole new person. It literally seemed to just happen overnight.

I skimmed one parenting book but really didn't do much research into the popular methods. I got the gist of the three phases

Phase E= Eat

Phase P= Active Play time

Phase S= Sleep Time

which I've been doing for a month already. Basically feeding her when she wakes up from her nap. But Slugger really fell into a schedule all on her own.

8 am Wake up and Eat Meal #1

Read a book, practice sitting in bumble chair, talk story during active time

9:15-9:30 am Nap

11:30-12 Meal #2

She amuses herself pretty much during active time

1:30 pm Nap

3:30 pm Meal #3

Tummy time and physical therapy exercise (stretching and rolling practice)

7:00 pm Meal #4

9:00-11:00 pm Meal #5 Bedtime Meal

Notice I don't put down nap times for the last half of the day. That's because she's inconsistent in the afternoon and at night. Sometimes she sleeps for hours and sometimes she stays up to her next meal. It also means that her bedtime meal just depends on how tired she is.

I always said I would move her into her nursery at 3 months (corrected) but somehow when she hit 3 months, I was overcome with amnesia. I can't remember any reasons why I would ever want to do that. I love having her sleep in her cosleeper right by my side. What a beautiful sight whenever I open my eyes. So, we're transitioning her for our own sake. We put a sheet on her crib mattress and set up a video baby monitor that we got as a hand-me-down from my sister (LOVE IT)...and she takes her day time naps in her nursery.

She's conditioned to know it's naptime whenever she's in her crib. But, our dog, Charlie, certainly loves to choose a spot right outside her window whenever he howls at any sirens. And there's always sirens somewhere in Kaneohe multiple times a day. Sheesh.

[Photo below: I have the video feed right on my desk where I do all my work. I love the view. I'm so spoiled. I can't imagine not having the video aspect. And I can even see her chest rising and falling while she breathes. Reassuring to the power of ten]

Finally just some pics of her in her bumbo chair, tummy time, and taking a nap with daddy-o.

[Photo Below: She loves tummy time much better with this Tiny Love tummy time mat she got for Christmas from Uncle John-John]

Ten steps forward and a shift back

2011-01-21T01:34:00.000-08:00

Tonight, the women's ministry at our church hosted a Bunco night and I invited two friends who live on the windward side to go with me. I am trying to fill my days with people and activities and it is fun. Bunco is a fast-paced game with rounds of rolling dice for points. You switch tables and partners quickly. At one particular table, a woman asked me 'How's baby doing?" Oh, baby is doing great. She's so big. She's at home with daddy. And a girl at our table who I had never met before lit up with curiousity. She was a new mom so she peppered me with questions.

"How old is your baby?"

Well, she's like a 3 month old.

"Wow, she's only 3 months. You look good."

Well, it hasn't been just 3 months. She came prematurely.

"Oh, how early was she?"

She was 3 months early. So, she's almost 6 months old but like a 3 month old.

The girl was super friendly and sociable and rattled off all her friends who had given birth early. Weeks early now, not months early. Then she asked

"Is she your first?"

Then the discomfort began. There's just four of us on a small table rolling dice and any second the horn is going to blow and we're going to change tables like little kids playing musical chairs. I certainly am not going to tell the truth but lies hedge in my throat.

I answer, yes.

I say nothing more, hoping that the conversation changes direction rapidly. The other two women on the table are quiet, engrossed in the game. I make a dismal joke about my luck rolling the dice. Still, the table is kind of quiet so the friendlly girl tries to pick up the conversation again by asking the question...again

"She's your first?"

Yes.

Now, I'm tense hoping that someone...anyone will say something else. Anything else. I don't know what other questions there possible could be but I'm wary of what other questions I might have to dodge. See, if she just asked "Is she your only?" I could answer that quickly. But "is she your first?" I can't because Casey's not my first. She's the youngest. Of three. But you can't say that. It's not the place. It's not what I feel like talking about when I'm trying to pretend I'm a normal new mom who didn't spend the last 6 months agonizing over losing two daughters in the span of three weeks.

If you read Scott's post, our good friends lost their 8 year old son tragically and unexpectedly. I can't even compare or begin to understand how you cope with losing your son. He was going to turn nine in the beginning of February. We scattered his ashes just last week and someone took a picture of her beautiful family on the beach, her, her husband, and their three daughters. As I looked at the picture, it looked so strange not to see Isaiah in the picture. He should be standing there next to his 5 year old sister, both of them side by side with identical grins. My friend says she wonders what she'll say when she meets people and they ask her how much kids she has. I shook my head. I have no answer. I'm guessing she'll do what I do. Your lips say one answer out loud while your heart whispers another.

I think I'm doing so much better now. But there are set-backs. Seeing our good friends go through pain that no one should go through. Watching a show and one of the fringe characters tells their sob story about losing a loved one. Even watching Teen Mom on MTV. One of the teen moms has twin girls and one of the twin girls seems to have nerve damage that keeps her from using her legs. I was holding Casey and floored by how thankful I am that her legs are strong and straight. I don't know why but I just started to cry, remembering how perfect my baby girls were. So tiny but their arms and legs were just perfect and strong, just in miniature. Just a little mistake in Rory's heart. And allison, so tiny, but so fierce. Brought down by an infection in her intestines.

Have you heard of that saying "play happy until you feel happy." I think I've been doing that for the last six months. And as I've been healing and feeling more happier, I play at being even happier. Just take what you feel and go up a level. Some nights when I come home, I wonder if I've "played" too hard. Have I wandered from "trying" into "faking." I can't always tell when I'm really all happy and when some of it is happy with a bit of effort. In my effort to play happy, I lose track of where exactly I am. I apologize. I don't want to be fake. I want to be genuine and real. I just don't actually know where that is sometimes.

It's when I come home and my mind keeps replaying that question "Is she your first" over and over again that I remember...I still have a ways to go.

Slugger- 2.5 months adjusted

2011-01-17T14:48:00.000-08:00

Update on our New Year's night. It was fun....very very restful. We got the cheapest room we could find which was still pricey. It was pretty tiny and I opened the glass sliding door to step out onto the patio only to find out there was none. You open the glass sliding door to just find a waist-high railing across the opening. I tried to push it thinking it was some high tech expandable patio...but it wasn't. We had a sweet view of a building and a sliver of mountain. But it was perfect for us. We had an exciting night. Casey and I fell asleep at 10 pm and Scott was up by himself at midnight watching the illegal aerials fired from the parking lot below.

We're guessing Slugger is about 12 and half pounds. She had her RSV shot almost two weeks ago and she was at 12 lb 3 oz. The shots are becoming more hard as now she takes more time to calm down. She does a really sad cry and her face gets all splotchy. When she's cold or crying, her face gets super white but her nose turns red. We call her Rudolph. No rolling yet. She seemed to be getting close as she would almost roll over trying to get her thumb into her mouth. But now she's more coordinated so she can suck on her thumb without much exertion. She never liked her binky (pacifier) but now she loves it. She tries to suck on her hands and now we wake up in the middle of the night to slurping sounds as she tries to cram both hands in her mouth.

She's still cooing a lot and has just started to laugh. It's an explosive laugh followed by silence. It's funny. One time she laughed when she saw my car. I guess she finds it funny. The best story is this past week my high school friend came up from the big island. Nalani is pretty funny so I was telling Scott a story that Nalani told me. When I got to the punchline and we started laughing, Casey spit out her pacifier and laughed too. The timing was perfect.

She can't hold toys yet but she loves this Sassy mirror that I got from Amazon. When I put her down for a nap, I place her so if she looks one way she can look at the Christmas lights from our fake little tree. If she turns her head the other way, then she can look at the lights and herself reflected in the mirror. She loves the colors and the ladybug and in the past two days she's started to touch it. There's a part that makes a crinkly sound and I can hear it when she plays with it. This thing rocks. Now when we pack up Slugger to go to the grandparents, I make sure to toss that on top of the diaper bag. Can't wait to use it for tummy time.

I am returning to work soon so we're using this time to visit with friends as much as possible and try to get Slugger on a routine. We don't know what it will be like when we're both working so might as well make the most of now. We had an exceptional week of being able to see a lot of Casey's NICU aunties. And her other aunties and uncles, I just don't have pictures.

[here's Auntie Gina. I love this picture. I was on the edge of my seat as Gina precariously sipped her hot coffee while holding her sleeping son. Good job, Mama!!!]

[Slugger and I went to Auntie Mariko's baby shower. This is Mariko's parents who fell in love with Slugger and likewise, she adored them. Mariko told me that after we left, her dad kept talking about Casey and calling her "magic." How cute!!!]

[Auntie Laura must have known all about the dress code]

[Got to eat lunch with Auntie Leila who just got out of jail. JK!!! I know they say to avoid spicy food when breastfeeding. That's out the window. I eat spicy food every day. This was at a thai restaurant and the spicy curry was so ono]

Slugger is cooing. Here I am trying to teach her how to wish you all a Happy New Years!!! I don't think she's ready to embrace her Hawaiian side yet.

Scott's Blog "Blessed are the Pure in Heart."

2010-12-28T19:33:00.000-08:00

A family near and dear to many of our hearts lost their 8 year old son suddenly, without warning. I hope you find time to read Scott's thoughts and memories of a little boy who made a huge impact.

5 mo/2mo "First Christmas"

2010-12-28T18:04:00.001-08:00

Slugger
December 28 2010
5 months old
about 11 weeks adjusted

I can't believe it's been five months since our lives turned upside down. The NICU life seems ages ago although we just had lunch with some of our nurses the other week so it still lingers with us. Two days into the new year 2011, Slugger will be exactly 2 months adjusted. I may go into a lot of detail but this will all go into her baby book whenever I get organized.

Slugger is still a smiling machine. Her lips disappear when she smiles, and she's all dimply cheeks. Her left cheek still has a dominant dimple but sometimes we see a faint glimpse on the right...it's elusive so we may be imagining it. I know everyone thinks she's a mini-Scott. I can pretty much pinpoint whose features she inherited. Her hair looks black but in the sunlight it's actually dark brown (from me). She's got my forehead, poor thing (we'll be growing out those bangs from an early age). She has Scott's eyebrows and eyes but she has these beautiful, thick and long eyelashes (yah me). My nose, Scott's mouth and chin. So, all in all, Scott's genes seem to have kicked mine in the butt. But, as Casey gets bigger and bigger each week, I see less of Scott and more of Casey. I just see Casey when I look at her. And she's beautiful. Absolutely beautiful. Fair skin with dark hair and thick eyelashes. A cute little smirk when she looks you in the eye.

She's finally learned to bring her hands to her mouth. She sucks on her palm when she's hungry. I saw her try for an hour to get her thumb in her mouth and when she finally succeeded, she made a face and spat it out. Only to try again. When she's hungry, she'll start sucking on her left fist...we're crossing her fingers to see if she's a lefty like her daddy (although they say babies are pretty ambidextrous until they're older). Temperament wise-she's a mellow, sweet baby all morning. She'll wake up and just smile away, content just to lie wherever she is. But once the clock hits 4 pm (like clockwork), she becomes super fussy/super hungry/super needy. They call it the witching hour. After shunning the pacifier, we've just started to use it at nights until bedtime because I was afraid we were overfeeding her. We're still working on decoding the hunger cues.

It's awesome but we have the bedtime routine down great. At her 11 pm meal, we put her down in her mini cosleeper in the room and she knows that it's bedtime. She'll lie there quietly and drift off to sleep in no time. She gets up at 3 pm to eat and then she'll sleep in until 6 or 7 am. She's discovered kicking and uses her feet to push off when you're holding her. She's also started a new trick of kicking and walking on the side wall of her cosleeper so she somehow manages to turn sidewards by morning. When we're in bed, we can see her little legs "matrix climbing" her bassinet wall. I once saw that she had turned from her back all the way to her side in her sleep and I tried to wake up Scott but he refused to open his eyes. He said she'll do it again when he's awake...eventually. Oh, and she's started cooing. It's so adorable. I left her alone in the living room and she was staring at the christmas lights and talking to them.

11 lb 6.5 oz (according to our bathroom scale)
~22.75" long

[above: we can't believe how big she looks in her co sleeper]

Her first Christmas was a fun one. Scott has a small music gig every Christmas morning for Pleasant Holiday in Waikiki. So, we all woke up at 5:30 am to trek down to Waikiki to see Scott play Hawaiian Christmas songs (did you know there were other songs besides Mele Kalikimaka?) for all of 10 minutes. Then we drove around trying to find a breakfast place was open...ended up at Kenny's in Kalihi. Since we were out and about, we drove to Waipahu to drop off presents and for Casey to see her cousins only to find out that no one was awake at 11 am.

So we went to Scott's parents house to open presents and enjoy an amazing dinner. Scott's sister, Sara-Anne, was home for the holidays so everyone was all together. I borrowed some pictures from Scott's brother, Stanton.

The picture below shows Casey's grandpa, Pat. If you look closely at his right hand, you might see something pink. That's a pink pig puppet. No one seems to know where Grandpa Pat got it from but whenever they babysit Slugger, he entertains Slugger with little puppet shows. Sometimes he gets her so riled up when she should be sleeping. Well, I guess not everyone loved the frequent appearances and shows of the pink pig because somehow the puppet mysteriously disappeared on Christmas day. I believe certain members were aware of it's location but remained close-lipped. Poor Grandpa kept asking everyone where it went...I hope it didn't ruin his Christmas.

[below: Grandpa having to entertain Slugger without the pink pig]

[below: Scott and mini Scottlyn]

[Slugger with her dad, Auntie Sara, and Uncle Stanton]

[Slugger and the cousins]

[slugger, me, Scott, Uncle Stanton, Auntie Sara, Grandpa and Grandma ]

Scott's sister, Sara-Anne, gave us this beautiful framed song for Christmas. It's completely handwritten, she even did the golden inlay part herself. I, not being the Beatles expert, didn't recognize that it was a Beatles song and initially thought she also composed it herself. Hey, she did get her graduate degree in professional writing so it wasn't a far reach. At the end of this post, you'll see a video of Scott singing a Beatles medley with this song to Slugger.

Slugger got amazing gifts for Christmas. She's going to be a well-dressed baby with awesome toys. She actually had 3 different adorable Christmas outfits that she'll be wearing every day until this weekend (I don't think you can pull Christmas clothes off once you hit New Years). Here she is sporting one from my Aunty Linda.

Thanks for tuning in. Mele Kalikimaka a me Hauoli Makahiki Hou!!!!

The video clip below is Scott playing and singing a medley of "Golden Slumbers/Carry That Weight" to Slugger....although it's the end so you'll only hear Carry That Weight. Watch Slugger's joy and she even tries to join in singing a duet.

Christmas Newsletter 2010-all fixed now

2010-12-14T15:21:00.000-08:00

1. Click on image below and it will open in new window
2. Scroll over picture (magnifying glass icon will appear) and click to enlarge for reading

It didn't work at first but should now. But do leave a comment if it stops working.

1.5 months old/4.5 months old

2010-12-14T15:09:00.001-08:00

10 lb 7 oz.

Last week, I saw the saddest story on the news. A family had their home broken into and their computers and cameras taken. On those computers were videos and pictures of their 18 month old son that had just passed away. What a cruel act of thievery. There are things that can never be replaced. I remember just last month my sister texted me that my 2 year old niece was playing with her flip video camera and managed to delete EVERYTHING on it. I laughed at my little destructive niece but shrugged it off. My sister brought it up again the next week and I realized what she was trying to tell me...everything on it was gone. Even the video my sister had taken of Astro the only time my sister was able to visit the girls in the hospital. It hit me and I was saddened the rest of the day. I have just a few short videos of Astro and a bit more pictures. I love the pictures but the videos mean so much more. You can see movement in them...and thus you can see the life in them. Allie was alive on those videos. When she passed away, I realized how much i wish I had just taken tons of videos every day....of her little legs kicking or her hands batting at her CPAP. It's the reason why I have tons of video clips of Casey. From that day on, I video taped everything. My heart goes out to the Stringer family and I hope there's a happy ending to this all.

Casey had her monthly RSV shot last week. Just a few more to go to get us through the flu season. Also, while we were at her nutritionist appt. I saw her pediatric cardiologist, Dr. S., and her maternal specialist, Dr. O, in the hallway. They were with us throughout the whole triplet pregnancy and it was wonderful to show them Casey. Poor things, I also peppered them with questions in the hall. Women who go into premature labor are more likely to do it again with subsequent pregancies. So, I read that even with triplet pregnancies, it's important to ask your doctor if it's likely that you would go into preterm labor again. Scott and I really hope that we'll be able to have more children and make Casey a big sister. It was wonderful to hear Dr. O say that he believes the only factor that sent me into premature labor was the stress of carrying three babies.

I cornered Dr. S about Casey's ASD, the hole in her heart, since he is not scheduled to see her until her 1st birthday. He says that he didn't need to see her soon because he's pretty sure the hole will close on it's own. Awesome!!! I brought up my concerns about heart defects. When Rory was diagnosed, I did research into it. Most heart defects are genetic but it can also occur randomly. Since Allie and Casey were fine and there was no history of it with me or Scott's family, I assumed it was random. Now that Casey was diagnozed with a small heart defect, I asked the doctor about it. He says that most of his patients don't show a family history of it. And if Scott and I are able to have more kids, we would be getting echos during pregnancy to watch for heart defects with those pregnancies. [Casey on her last visit with Dr. I]

Lastly, Casey had a visit with the retina specialist, Dr. I. He's such a nice guy. He has two boys of his own and he's always so excited to see Casey. It takes both of us now to pin Casey's head so he can look into her eyes...and she's strong enough to squint her eyes closed. So, unfortunately, Dr. I had to use a tweezer-like contraption to pry her eyelids open. I couldn't look. She did quite her fair share of screaming. But, Dr. I announced that her retina blood vessels were finished growing and there were no need for any checks until her first birthday. Another one down!!!

At 6 weeks, Casey is still smiling a lot. She's also in love with sticking out her tongue. I'm a little nervous she's going to develop the habit of licking things like her crazy cousins. I caught my niece, Lauren, licking the sidewalk at church once. Not much else development-wise, I can't wait until she starts rolling. She does love practicing holding her head up. She's getting so good at it, although, it means she has to claw at your chest sometimes to get leverage. I've got some mean scratches. Her reflux has really diminished. This past week, we've graduated Casey from sleeping in an incline rocker to her flat bassinet. She's done great. No spitting up. Of course, we've still had some incidents of major spitting up after feeding. Sometimes I feel like it would just save time if I uncapped the bottle of formula and just poured it down my back and over the seat cushions. She's outgrown all her newborn clothes and fits all her 0-3 months clothing. She's fascinated with people talking to her. She stares at your mouth and she moves her lips and tongues but hasn't figured out how to make sounds on demand.

She has one learned one crucial thing. Man, she can cry. No longer can we brag that Casey is not a criar. Before, we had time to get that bottle ready before she got so fussy she would cry. Nope. Now, it's "happy happy giggle giggle...slight pause....WWWWWAAAAHHHHH!!!!" Uh-oh.

Another monumental step is that we have started to relinquish her to Scott's parents for babysitting. We started off with Sunday mornings so I could go to church. Not only did Casey come back alive, but she is super happy at her grandparent's house. She stays awake the whole time and is treated to being spoiled non-stop. Scott's parents live right down the street and are always willing to help out. It's such a relief. It's unbelievably nice to take a few hours and run to do errands or Christmas shop. Scott and I even caught a movie, Tangled. I think I caught a cold when we went to the movies. So, Casey caught her first cold. We took her to the doctors and had her tested, but it came back NEGATIVE for RSV. Out of the three of us, she did the best. I think it's the breast milk antibodies. Scott and I are still hacking our lungs out but she had a cough just for a day. She is truly protected by prayers.

[grandma and Casey]

[she loves to just be adored]

[grandpa and Casey taking a snooze]

On certain occasions when we have needed to, we have taken Casey out with us. The picture below is a wedding ceremony at church that we took Casey too. That's Scott telling everyone "NO touch!!" Actually, he also said "Don't look at her with your germy eyes."

After staring at Casey all day every day, I've come to the conclusion that she bears a striking resemblance to Crayon Shinchan. Do you see it?

Thanks for tuning in. I love the holidays and I hope that you're all enjoying every moment of it!!!

Slugger 4 months real/1 month adjusted

2010-11-30T12:15:00.000-08:00

Slugger
4 months old (chronological)
1 month old (adjusted)
10 lb even
~21 inches long

Casey has been eating every three hours. That's three hours from the start of her first mealtime (before I was a parent, I never knew that). Just this past week, she's started to stretch it out to 4 hours more consistently. Her nutritionist also took her down from 3 formula bottles to 2 and the rest is breastfeeding (which who knows how much she's intaking). So, we were wondering if she was getting enough food. Even when fed bottles, she's still eating about 80-90 mL, the same as when she came home from the hospital. Yesterday's trip to her pediatrician for her 4 month check-up erased all worries. The girl is 10 lb. She's 8 lb heavier than when she was born. She gained a whole other baby. So, if she wants to sleep for 4 hours, we let her. Whoo hoo!!!

Just last week, I noticed she really started to make eye contact and stare at faces. She's smiled before but usually just at impulse. Now, she smiles AT us. It's amazing. Usually in the morning. She wakes up and is so quiet. She lies there until you see she's awake and then she smiles. Heart melt right on cue. When you hold her, she's also really working on trying to hold her head up. It's wobbly and she can only do it for so long before sheer weight brings her crashing down. I had just filled out the doctor's questionnaire and answered "no" to whether she was using her arms to push herself up. Her peds doctor put Slugger on her stomach and we were shocked to see Slugger use her arms and push herself up. Her face was like 2 inches from the mat but she was holding her head up.

I exclaimed "Wow, we didn't know she could do that. We never reallly put her down. We usually are carrying her. Ooops."

So, we may put her down more and see what else she can do. The doc was super impressed and said she's not too far from rolling over...albeit probably by accident than intentional. Easter Seals is coming back this week to help us make goals for Slugger of what we want to accomplish and then they'll help us try to work towards those goals.
Last week, Slugger had to go for a swallow test. Preemies have trouble coordinating their suck-swallow-breathe function when eating. We've been thickening her feeds to keep her from choking. And at home, she's doing great. We were looking forward to the swallow test because we thought we might be able to just give her straight formula or milk, no thickening agent needed.

This is the huge X-ray machine that they use with Slugger. We had to feed her a solution with barium in it. It's about the consistency of her thickened formula. I was a little weirded out by the solution. I mean, it's not like it's milk or anything nutritious. It also had the appearance and consistency of watery white paint. But she loved it. She was smacking her lips and licking it up once the test was over. So, Slugger had to sit in that red chair.

Then Scott had to suit up and he was the only one with Slugger as he fed her the barium solution. The rest of us were behind a glass partition. I would have taken a picture of the whole thing but they turned off all the lights once the test began.

Here's Scott all suited up.

They used X-ray to make a video of Slugger's mouth and throat as she drank from the bottle. Then they went over the video with us afterward. Even though she looks like she's perfectly fine, you can see from the video that she's aspirating as she swallows. As she swallows liquids, a little bit is going down her airpipe each time she swallows. It explained why sometimes she sounds congested or coughs when she's eating. It settles into her lungs. Our lungs can handle a little bit of fluid but it does put her at risk for developing pneumonia. So, she has to stay on thickened feeds and have another swallow test in a month. Thankfully, the peds visit checked her lungs and says they sound clear.

We had a second baby shower for Slugger. Our wonderful friend, Lori, organized it and threw it for us. Scott watched Slugger and I headed over to Joyful Gardens restaurant to spend time with beautiful women. Slugger got some great gifts and even gift cards to pick out what she wants But, seriously, the best part was being able to hang out with good friends. I sat at a table with my family and Scott's mom. I haven't hung out with my sister in so long.

[My auntie Linda, my Mom, Scott's grandma, and Scott's mom]

[My niece Lauren and my sis, Cassan]

My niece Lauren and I are very close. Or we used to be very close. She used to stay at our house a lot until I got too pregnant to run after her. I've really missed her. Unfortunately, I'm no longer her favorite. My sister says Lauren now tells everyone that she loves Casey. Casey who she really hasn't ever seen except for videos on my phone. But one morning, Lauren packed a bag and told my sister that they had to come pick up Casey so Casey could sleep over their house. Oh, I can't wait for Slugger to get bigger so she can play with all her cousins.

We did take Casey out for things beside doctor's appointments. It's not for Casey, it's for me. It's rough to quarantine yourself from the world. I love TV and I'm pretty bored with it. Scott's family had to work for Thanksgiving and my family has too many sick toddlers to risk taking Casey around. Scott's job involves a lot of people who don't have families and thus, he usually has gatherings on Thanksgiving Day to give everyone a place to go. So, Scott was going to be at a church Flag Football Game all morning and then at an Ignite Thanksgiving Lunch. I couldn't bear the thought of spending most of the day by myself so I packed up Slugger and took her to the park for the Flag Football Game. We wrapped her stroller with this handy blanket from Aunt Gina to protect her from wind, sun, and yes, people. It was an awesome day. Plus, everyone at the game knows how fragile Slugger is so everyone looked at Slugger but from a distance. I appreciated being able to socialize and not worry. Slugger has so many protective aunts and uncles.

[Casey in her stroller tent]

Lastly, here are some pics of Slugger one morning.

Slugger had two shots at her doctor visits yesterday, plus they drew blood from her heel. Poor thing. And what am I doing during her shots? Running to get my phone so I can video it? Warning: She makes crying look cute.

Casey's First Month Home

2010-11-17T18:34:00.001-08:00

Casey has been home exactly 1 month today. Boy, I really miss having those daily weigh-ins that the NICU gave us and the weekly length measurements. I love having stats. Casey was born at 2 lb 4 oz, she left the hospital a month ago at 6 lb 2 oz and, a week ago, she measured 8 lb 7 oz. Tomorrow, she has an appointment with a dietician/nutritionist so hopefully we'll get another weight measurement.

The first week home was a blur. We brought her home on a Sunday. Because we're limiting her exposure to pathogens and thus, pathogen-carrying people, there was no welcome home party I always see on those baby shows. Uncle Stanton was the only one to greet us. He and our neighbor had set up balloons and signs to welcome Casey home. We took Casey into the living room and assessed our situation. Our attack plan for the first week was to just camp out in the living room. Scott had taken his 2 weeks of vacation so we tackled everything together until we fell into a routine.

Casey's first car ride. Doesn't she look thrilled? I think she was confused by the movement and vibrations. It took her a few car rides before she got used to the whole car thing. She's safely tucked into the carseat she inherited from her cousin, TJ. Note: it is not recommended to have used car seats, you must know if the seat has been in any auto accidents and is not expired.

Casey spent the first few nights sleeping in a mini-cosleeper...a type of bassinet. No blankets!!! We used kiddopotamus wraps (LOVE THEM) and learned that Casey does not like having her arms swaddled. She'll battle it out until she gets them free. The video below shows her spending her first night in the cosleeper. So cute.

After hours of just sitting and staring at her sleep, Scott turned to me and said "You know what makes her so cute? When she stretches, her hands don't reach above her head." And he's right. She loves to stretch and her hands just barely break even with the top of her head. I had to try stretching myself to compare. She's got a big head, I hope it means that she's uber brainy.

[video below: it was wonderful to wake up in the morning to see her chubby smiles]

She didn't do very well in the cosleeper just because she is prone to acid reflux ( a preemie problem) and vomiting. It comes out of her nose and she just gets this horrified look on her face. Yuck. So we try to hold her upright for at least 20-30 minutes after each meal. She eats every 3 hours. Hmm, 10 minutes to change her diaper and warm up her bottle. About 30 minutes to feed her. Then holding her for 30 minutes before you could put her down. It gave us less than 2 hours before the next round started. One thing that really helped was the Fisher Price Rock and Play Sleeper. It says it is safe for babies to sleep in overnight...and it's angled so it helps babies with reflux. Casey lives in it. It's a relatively new item, so I'm still a little nervous using it. We put it right by the bedside with the lamp on so we can check on her often.

Having lived with NICU monitors that told us everything we needed to know about Casey, we were more than nervous. She slept in the sleeper and it is lightweight so we used it like a carrier, we took her everywhere in the house we were. Cooking? She's in the kitchen. Eating? She's in the living room.

The first week was spent in our living room and it was a mess. Everything we could possibly need had to be within arms reach because we are fumbling new parents. We tried to recreate the NICU room to the best of our ability, albeit a super messy version.

We didn't have visitors and we didn't really leave the house except to go to doctor appointments. Man, there are a lot of doctor appointments. She has 2-3 appointments every week. The weeks we only have 2 are like a vacation for us. She has to see the pediatrician, a pediatric eye doctor, lactation, speech, and a nutritionist. Oh, and she also had her monthly RSV shot. Speaking of RSV, we really appreciate everyone responding so positively. At her appointments, I check us in and Scott takes Casey directly from the car into the back. All the doctors have it set up so that Casey never has to wait in the waiting room, which can be full of sick people and germs. I was in line and the man behind me asked me "Are you Casey's mom?" It floored me. How in the world? He introduced himself. His daughter went to HBA and he heard about our story. He recognized me from the blogs. I said "Oh, Casey is here too." He responded that he saw Scott and Casey but stayed away because it's RSV season. That was so awesome!!!!

Casey getting her retinas examined. Retinas are usually mature by birth. Because Casey was premature, her retinas will probably take an additional 2 months to fully develop. So, she needs to continue to get them checked every other week. They dilate the eyes with drops and then Scott has to be the mean parent that holds her still while the doc looks into her eyes. He's a really nice doctor. He has two kids and he really seems to love babies. Plus, he's quick so Casey hasn't fussed too much. So far, it's looking great, but we still have to keep going.

Casey at her pediatrician appointment.

Casey getting a special home visit. And if she wasn't getting enough doctor visits. One Sunday, I called our good friend, Keiko, who is also married to Scott's cousin to come for a house visit. Casey always grunts but her grunts sounded like she was trying to clear her throat. 20 minutes after I texted Keiko, she was at our door with her stethoscope. She's a peds nurse at Kapiolani. She listened to Casey's heart and lungs and declared her excellent. Keiko tried to make me feel like I wasn't silly by admitting that when she brought her son, TJ, home, she checked his vitals every three hours. Man, I wish I was a nurse. Or that Scott was a pediatrician/pastor.

Another appointment at home for Casey was with Easter Seals. At our entrance interview, our social worker asked us if we knew what Easter Seals was. I nodded which was a lie. Before Casey, I never really knew what March of Dimes exactly did or Easter Seals. Easter Seals helps those individuals with disabilities. They also have prevention and early intervention programs. Because of Casey was so premature, she is at risk for developing disabilities. It is a free service and they will basicall be evaluating her as she grows and checking on her development. She's 3.5 months old but her adjusted age is about 2 weeks. A speech therapist and physical therapist came to our house and played with her and asked us a bunch of questions. I felt pressure to be completely honest.

Therapist: Does Casey like to look at faces?

Me: Oh, yah.

some silence

Me: Well, some of the time. Most of the time she's just looking around. Maybe my face just happens to be in the way.

I didn't want to exaggerate things, I wanted an honest evaluation of her. The therapists were so nice and friendly. They played with Casey for 20 minutes and said that she's on par for a 0-1 month old. Exactly on track for her adjusted age. Awesome!!! I know I said I wanted to be a nurse, but I kind of wish I had their jobs. How awesome would that be to just go to people's houses and play with their babies. I'm sure there's less fun aspects to it.

Casey at 0-1 month adjusted:

Casey is starting to make eye contact and stare at faces. When you hold her, she tries to hold her head up. She can actually get pretty good control for five seconds and then gravity and the weight of her head win over. We try to do tummy time and do some exercises the physical therapist taught us. It's hard though. When she's not eating, she's sleeping. So, most of the time, tummy time just turns into her face down trying to chew the blanket or she just knocks out. She grunts as usual but now she cries when she's really frustrated. The therapists were actually really happy that she cries. It's the beginning of speech. Oh, we were kind of hoping to skip the crying part.

Her eyes have almost turned completely from gray to brown. She can raise just her right eyebrow in a quirky manner, I'm so jealous. I have tried to get a picture of it but she's too quick. But she'll quirk her right eyebrown look at you sidewards. It's hilarious. She sticks out her tongue a lot and tastes the air. And she loves being held. We only let her sleep on her back, so being held is the closest she gets to sleeping on her stomach. She loves it. We are back to calling her Slugger more. But now we have more names. I call her squishy face. Kissy face. Buba. You name it.

Well, that's it for this update. Here, enjoy some pictures of how big she has gotten.

Her and Grandpa Pat.

She has Scott's expressive eyebrows. He says that this is their resting faces, they're not mad.

One thing I really have to mention that has helped Scott and I get through this first month. Our friend, Kacie, set up a calendar for people to volunteer to bring us dinners. I can't take Casey to the store which leaves most shopping to Scott who sometimes has meetings at night after work. It has been such a blessing. We still have occasional meals of saimin or hurrican popcorn (ooh, I'm hungry now) when we're left to our own doing, but we have been feasting wonderfully this past month. I enjoy when people brought us homecooked meals. I make like 4 dishes and just rotate through those four. So, it's awesome to see what other people make. It is so ono. We are friends with some amazing cooks. Thank you guys so much. Seriously, has made life so much easier.

Next time, pics from her first baths (PG of course) and her first photo shoot

3 months without Astro

2010-11-16T14:14:00.000-08:00

Today marks 3 months since Allison died. 3 months since I held her little hand. 3 months since I last saw her cute little pout and chin, her dark wavy hair. Tomorrow marks 1 month since Casey came home. It's such a strange balance of sad and joyous milestones. We're still trying to figure out how to celebrate Casey when her life has been so entangled in her sisters. Her birthday is also her sister's birthday, and the day that we lost Rory. Even trying to fill out a baby book for Casey is hard, there's blank spaces for her first ultrasound picture...but her first picture is her and her sisters. The book asks to list her siblings and the only names we can put down are of the daughters we lost. It's not Casey's fault, she won't remember that when I carried her she played kicking games with Rory. That in the NICU, her incubator was across from Allison and when one's monitor alarm would beep, the other girl's alarm would answer just a few seconds later. The nurses used to say that they were playing with each other. Their lives are forever intertwined.

Even this blog is an odd mix of Casey's News and it's also a grieving blog, like this post today. I told Scott last week, Casey is worth anything we go through, there's other friends we have still trying to have children. I just feel like we had to pay such a high price to have her.

It has gotten so much easier over these three months. Our days have more highs and very few lows. The healing process has begun. There's just a few times that it rises back up, solo car rides and showers. Does it every time. But we're trying to move forward. Not letting go, just trying to move forward while taking our memories with us. It will be tricky. How do we remember Allison and Rory without taking away from Casey and everything she has given us? We don't know yet. Christmas card letters will be tricky. So will birthdays. We don't Casey to live with a shadow hanging over her. It will be a learning experience. One thing we did with Casey might have seemed insignificant to others, but it was huge to me.

When I woke up from my C-section anesthesia, I had three plastic bracelets on my left wrist. They corresponded with ID bracelets on our daughters. We kept Rory's bracelet on for a few days but water got into it when we washed our hands and was making it moldy. So a week after the girls were born and Rory died, we finally and reluctantly cut off our Rory hospital bracelets. Now we only had two bracelets on as a daily reminder. It was tough to see a physical representation of going from three to two.
When Allison died, we tried to pull the bandaid off quickly. We cut our Allison hospital bracelets off the next morning. After washing our hands at the NICU daily for almost 3 weeks, her name and info had been washed away and all we had left was her identifying number to know it was hers. It hurt to look down at my left arm and see one sad, lonely bracelet left. Where there was three, there was now just one.

You're supposed to wear your bracelet until your child is discharged. Since they're not meant to last for 3 months of wearing, the staff told us that we could take them off but we needed to keep them someplace safe in order to take Casey home. I refused to take mine off. The two times we cut off bracelets were for such devastating reasons, I made Scott keep his on until we could finally take them off for a good reason. People laughed at our grotesque bracelets. Scrubbing from elbows to fingertips for 2 mins to enter the NICU x going to the NICU 1 -2 times a day x 81 days= super washed out bracelets that squished when you pinched them.

You were supposed to take the bracelet off when you took your child home, not when you lost your child. And we had to cut two bracelets off for the wrong reason. I was determined to enjoy the day that we took our last bracelet off for the right reason.

So we wore them with pride. Well, I did. I don't think the symbolism was as big to Scott, he's just a great husband who goes along with my crazy notions. Then, we got so overwhelmed taking Casey home that we never actually got around to taking the Casey bracelets off. And when we did remember, I would keep postponing it. I wanted to make a big deal of it, take pictures. Finally a day came when we remembered to have the camera nearby, and we cut our Casey bracelets off. For the right reason.

Tomorrow, I'll post on our first month at home with Casey. She's so big now. We can't wait for her to get a little big and a little more interactive and then we want time to slow down so we can enjoy every second of it.

Rewind-Casey's Graduation from the NICU

2010-11-09T12:53:00.000-08:00

Saturday October 16th

We were sad to leave Casey after spending the night, we were a little bleary-eyed. A big goal for the day was to transport 3 months of frozen milk from the NICU freezer to our freezer. Our freezers are completely full so I had to send out a text request and received so many offers of people opening up their freezers. We didn't want to have to spread it out too much so we managed to make do with Scott's grandma's freezer and Bow's freezer. Thanks you guys. It took two trips that day, but we managed to clean out our NICU supply.

The day went by so fast, I didn't get to take that much-needed nap. Being the responsible parents we are, we used our last night of baby-free time to wrap up some much needed chores. Scott went to a UH football game and I had a baby shower.

Sunday "The Big Day" October 17

Sunday, we eagerly showed up at the NICU with a carseat and open arms, ready to take our baby girl home. We kind of expected it to take hours to take her home. We knew we would have to go through her discharge papers and meet with several staff members to go over any medicine and special instructions. We had follow-up appointments already lined up. Surprisingly, it was much less complicated than we envisioned. Speech came down to go over Casey's feeds and the plan to keep thickening her feed to help her swallowing and NOT choking. Lactation was also there to go over their plan. Casey would be on fortified formula 3 x a day and breast milk by bottle 5 x a day. We're trying to get her to breastfeed but there's so much emphasis on her gaining weight, that they want to make sure she's getting full meals so we are mostly still feeding her by bottle. Both the milk and formula have to be thickened with a thickening gel, and both have different ratios so they have to be mixed differently.

She has iron added to one of her meals a day and she also has a multi-vitamin added to one of her bottles once a day. And that was it. We kept waiting for more, but that was all the instructions to go home with. So I busted out my camera and had everyone working that day who wasn't holding a baby take pictures with Casey. It was such a weird feeling to know that we were leaving for good, we were hesitating. I think we were stalling. The nurses kept peeking into the room and exclaiming "what? you guys are still here?" So, Casey's nurse Erin wheeled Casey outside and we took her home. Took her home. Can't believe we did that.

Casey Lorelai Sunaoka
Born on July 28
at 26 weeks 1 day gestation
weighing 2 lb 4 oz

[Video clip above of Casey on her birthday, July 28] You could see every little rib in her chest. Her arms were muscular and there just wan't any fat anywhere on her body. Her poor little hands and feet were so swollen, they looked like little plump gloves. She was intubated and had surfactant to help keep the air sacs in her lungs open.

Discharged from the NICU
on October 17th after 81 days in the NICU
at 37 weeks 5 days gestation
weighing 6 lb 2 oz

Casey comes home with no oxygen tank. She breathes wonderfully on her own although it will be a few years before her lungs catch up to other full-term babies. She drinks from a bottle but has to be watched and "paced" to keep her from choking and depleting herself of oxgyen. She has an umbilical hernia. It looks like she has a huge belly button "outie" but it is actually a hernia. The abdomen muscle wall is still forming and it closes from the outside of her torso inward. The hernia should disappear after a year once the wall closes, although there's a miniscule chance that surgery might be required if it doesn't resolve itself by the time she is 2 or 3.

We discovered just a few days before her discharge that Casey was also coming home with a small hole in her heart. Dr. S. did a echocardiagram on her heart and discovered a small hole between the atrium chambers. It's a very common heart defect called ASD, atrial septal defect, and seems to affect girls more than boys. They assured us that it is common and doesn't often need surgery or treatment. In fact, Dr. S won't see her again until she's a year old and we'll just be under the care of our pediatrician. A lot of people don't know they had it because the defect may be so small. But it still unnerves me as it brings back everything we went through with Rory. Congenital heart defects affect 1 in 100 births. When you have a baby with a congential heart defect, you have a higher chance that your subsesequent children will also have CHDs. It's usually genetic. However, since Rory's identical twin, Allison, seemed fine, I thought in Rory's case it was just a random occurrence. There's no history of heart defects on my side of the family or Scott's. But now, with Casey's ASD, I am wondering. Maybe Allison had one but she just never got old enough for it to be detected. Casey is fine but we have to watch out for symptoms such as she gets tired or has a lack of appetite.

The ride home was nerve-wracking. Kanani had offered to drive us home from the hospital so we could both sit in the back. She promised to drive 40 mph. But Casey came home on a Sunday during church, so it was just me and Scott. Scott drove and I sat in the back with Casey. I had my hand on her chest the whole time to feel her breathing. I think she was real confused during the car ride. She just stared as the car vibrated over the pavement. It was phenomenal to think that after almost 3 months, this was the first time Casey would ever be outside the hospital. Her first car. Her first car ride. Her first breath of fresh air. I had the same thought the day Allison died. I was holding Allison in a chair by the open window and I could hear the birds chirping in branches just outside the window. It depressed me to think of all the things that Allison never got to experience, that she never even got to out in the fresh air. That she would spend her entire life in that same corner in the same room. To walk out those hospital doors with Casey was a defiant victory.

Video clip of Casey at a month old.

And finally, Scott made a video tribute to her stay in the NICU, saying good-bye to her sisters, and coming home to stay.

Thank you, thank you, God, that we got this day.

Rewind-2 Days to D-Day "Rooming In"

2010-10-31T17:45:00.000-07:00

There's one word I think that perfectly described my attitude towards Casey's NICU discharge.

Trepidation.

From the get-go, Scott and I discussed that as much as we wanted Casey to come home, we didn't want her to come home until she was more than ready. I joked with the nurses that we wanted Casey to stay until she was old enough to sit up in her plastic crib. We all had a good laugh but I was kind of serious Yes, it gets a little old to spend half your waking hours in the same white chair wearing a hospital gown holding your child, but we could have done it if it meant keeping Casey someplace safe.

The NICU is used to dealing with anxious parents and actually have something called "rooming in." From the minute it was mentioned, we were thrilled at the idea. You stay in the hospital overnight and you are able to practice taking care of your baby but with the expertise of the NICU staff at your side. It gives you a chance to practice all the cares your preemie baby will need at home before you actually take them home.

This was an awesome option for us. One, I was looking forward to being able to relax and just hold Casey as long as I wanted to without worrying about having to get home. Two, I'm a weirdo, but I was looking forward to staying in a hospital room. It's as close to a vacation as we have had in a while, staying someplace else besides our house with cable tv and food a couple floors down. I'm weird, I know. I was quite spoiled by staying in the hospital for the girls birth. Being doted on by the nurses, having a remote attached to your bed that controlled the bed, the tv, the lights. Scott was a little less excited, I got the great bed that you can adjust while he got to sleep in the "Daddy Chair Cot." Um, I didn't offer to switch.

I might have had some misconceptions about this whole rooming-in thing. I thought that there were these special rooms with a bed/bathroom/sink/tv and then there was an attached room with a one-way window where a NICU nurse would be...on standby watching Casey's monitors in case she needed to fly into the room and rescue Casey. Or maybe the nurse just sat quietly in the corner of our dark room while Scott, Casey, and I slept...watching us as we slept. I was in for a rude awakening. When they explained it to us just a few days prior, they explained that Casey would have a NICU nurse assigned to her...but that nurse would be downstairs in the NICU while we would be upstairs in our private hospital room. She would come in periodically to check on Casey and come up immediately if we called or needed anything. But, otherwise, we would be alone with Casey to take care of her on our own. WHAT!!! Who do they think we are, her parents?

The second and most frightening thing revolved around her monitors. Since her birth, Casey had probes and leads on her torso that measured her heart rate, respiratory rate, and blood oxygen. Two days before rooming in, I noticed that her monitor wasn't showing her blood oxygen anymore. Apparently, she didn't need it anymore. I got a little freaked by that. The nurses told me that we needed to stop relying on the monitors because we wouldn't have them at home. Little did they know that I was planning on unscrewing the monitors from the wall and taking them with us when they discharged Casey. The NICU staff also developed this super irritating method of blanking the monitor screen so that only they could see Casey's rates on their nurses station monitor but we couldn't see it. So mean. They say "Don't watch the monitors, watch your baby." I did try to develop the art of reading the nurses' face from across the room.

I know...I know...we won't have the monitors at home. Even more reason to take advantage of them while she's still here in the hospital. It seemed logical.

When I realized that there would be no actual nurse in our little hospital room, I did start to wonder how they were going to watch her monitors from two floors down. I had a dim hope they had some elaborate wireless system where they could have their monitors on the 4th floor read her probes on the floor. Nope, they told us, they just take everything off. Not a single wire. Not a single probe. It will be exactly like she's at home. Oh, crap. That's all I could think.

We did rooming-in a little different. Usually, you room in one night and then in the morning, they discharge your baby and you leave one big happy family. Someone threw this other option at us. Room in one night, go home and rest up the next night...and then take your baby home. That sounded like a smart idea for us. So, we packed our bags and showed up at the NICU on Friday night although we weren't scheduled to take Casey home until Sunday morning.

They let us choose whatever time we wanted to arrive but I kind of wish they just told us a specific time. I was so anxious to be there on time (5 pm) that I was on Scott's case and we rushed there without grabbing food. Well, we happened to hit there before Casey's meal time and then it was a shift changeover and then we gave Casey a bath. So we sat in the NICU about 4 hours before we finally headed up to our room. I tried not to look at Scott because I knew he was probably giving me stink eye as I wouldn't let him stop for food just to get to the hospital and end up waiting for so long.

We got laughed at for the amount of stuff we brought for our one-night stay at the hospital. We were only there for about 16 hours, but I like to have lal the comforts of home. This pile below doesn't even show the backpack that I was carrying.

Eva was our nurse for rooming-in night. First she had us practice putting Casey in her carseat. Casey got a bath. And then Eva took us up to our room. To transport babies in the hospital, they have to be in an incubator to keep them isolated from any germs in the rest of the hospital. It was such a huge moment. It was the first time in 81 days that Casey would leave the 4th floor of the hospital. Even if it was to go two floors up to the only other place she had ever been. And she was in an incubator, the same type of incubator that had first brought her down from the delivery room. I wasn't awake but I can only imagine the tension around that first day, July 28th...the team of nurses, NPs, doctors, and respiratory therapists that escorted her down in that incubator that day in July. Her little 2 lb body frail and small, breathing with an oxygen mask.

Now, she's this huge baby in comparision. Wearing newborn size clothing, breathing on her own. The incubator is heated so Casey sprawled out and took a nap.

We watch a lot of TV. We kept wishing the NICU would install cable so one of the things I was looking forward to was being able to hold Casey and watch a night of TV with Scott. Of course, we're old farts now so by the time we got settled in and got something to eat...we were so tired already. This picture below (I know it's hard to see) is one of the hospital channels and that's our friend on the screen, Dion. I remember flipping through the channels the last time I was in the hospital, the week of the girls' birth and seeing him all the time. He never told us he was a media star.

We brought plenty of snacks and they gave us ice to keep milk cold. We looked like we were having our very own tail-gating party, beverages for the whole family in da coolah.

I didn't get much sleep. I think I got about 1 hr 45 minutes of sleep the entire night. The best thing about Casey's crib is that it has plastic sides and it was perfectly the height of my bed. I literally was lying down and staring right at her face. We left the lights on and I just watched her chest to see the rise and fall. If I was ever unsure, I would lay my hand on her chest and feel her breathing. One things we learned about Casey that was hugely reassuring is that she makes so much noise while she sleeps. She grunts nonstop. And if you're grunting, that means you're breathing. Phew. Of course, it was even harder to get any rest with a noisemaker sleeping bedside.

Scott got a little more sleep than I did. He's a great sleeper. Eva and Gina both came in at Casey's midnight feeding to check on Casey and they both laughed at Scott's sleepy expression. What can I say? He needs his beauty sleep. And yes, he wore his hospital gown the whole time...even though he didn't need to. He just loves hospital gowns...he loves how comfortable they are. I think I'm going to see if I can get some online for him.

Ah, watching my family peacefully sleeping in the same room was one of the best moments ever.

Pfouffy hair Casey.

Casey eats every three hours and it takes about an hour an half to warm up her bottle, change her diaper, feed her, burp her, and just hold her. You would finish it all and realize, oh boy, she's set to eat in another 90 minutes. It was a tad exhausting.

But getting to hold her, carry around without worrying about wires, spend time with her as parents without an audience of other babies and people...so priceless. By the time we left the next morning, I was anxious to take her home. And I knew that in less than 24 hours, we would be taking her home.

Rewind-2 Days to Go Part 1- Car Seat Challenge

2010-10-29T02:27:00.000-07:00

Wednesday (4 days to D-Day), I had to neglect Casey for the day and report to work, which was an amazing blessing. I can't believe the thoughtfulness of others. I had burned up all my leave to be with the girls and it was another source of stress when we considered the change in our finances. But it was something we prepared to just accept. Then I received a call from my workplace. Raelynn, an angel in the finance department, had somehow crunched numbers and figured out a way to extend my leave for another two weeks if I came back to work for one day. Are you kidding me? I dropped everything and sped off to Alapai. I really missed Casey but it was nice to see my crime-fighting peers.

While at work, I received a call from the hospital. Casey had a choking episode during a feed that was severe enough that they had to evaluate whether she needed to be kept another week. After considering all factors, they decided it was safe enough for her to come home on Sunday. Phew, sigh of relief. After all the arguing I did with staff to keep her in the safe confines of the hospital as long as possible, I was so disappointed when I thought she wouldn't be coming home that weekend.

Thursday (3 days to D-day)-no idea. That day is a blur.

Friday

Friday was an awesome day. First, Casey had to pass her carseat challenge.

I liked that they call it a challenge, it makes it seem more fun. Like she's taking on an American Gladiator. It's slightly more tame. Really, she has to sit strapped into her carseat for 90 minutes while being monitored. It's to ensure that she can keep her oxygen and heart-rate up during a car ride. Babies slightly slump when they're in a carseat and they have to watch how it affects Casey's breathing and oxygen levels. They say the challenge is 90 minutes long because that's a safe time limit, on this island you can drive anywhere under 90 minutes. Maybe I made that up. She didn't look that happy, but the nurses said she seemed to love it.

She got this car seat from her cousin, TJ, who outgrew it very quickly. Thanks, TJ!!!! Casey loves it.

They did the carseat challenge before we arrived at the NICU, but another one of Casey's nurses, Eva, had us practice putting Casey in her carseat. At first, I didn't want to do it because I was impatient and we were getting ready to room in (see part 2 of this blog to follow). I thought "how hard can it be?' But, boy, I am so thankful that Eva made us do it at least once in front of her. When Casey was finally discharged, we had to be the ones who strapped Casey into her carseat and placed her in the car. It makes sense because it was the final piece of Casey's discharge. She was no longer in hospital care, she was now in our care. She was our baby and it was nerve-wracking to place her into our car. So, Eva having us practice in the NICU with her right there to guide us there was priceless. By the time we took Casey home, I felt comfortable in knowing where to position the buckles and how to tighten the straps.

The real fun on Friday was being able to room in, staying overnight in the hospital and taking care of Casey on our own for the first time. That's part 2 of this story...coming up.

Rewind-5 Days until Discharge- Important Info on Keeping Casey Healthy

2010-10-24T22:09:00.000-07:00

With Casey home, we knew we had to post some guidelines. I know I'm a rambler so I was hoping Scott would do it. I worked for two days on this blog, and he comes in in the last few hours and writes his blog. Saying the same thing but way better. Better phrased and way more concise. So, if you want the short but sweeter version of this post, head on over to Scott's Blog.

Or, he told me to just write "I know this is long, but if you truly loved Casey, you would read every word=) "
********************************************************
This year has had some cruel lessons in how fragile life is. I know there's no use in feeling guilt but I still struggle daily not to be consumed by it. I see stories about triplets or read blogs and I analyze every little thing about my pregnancy. What could I have done differently? When Dr. O and Scott were threatening to put me in the hospital at 24 weeks, what if I had gone instead of telling them that they were being silly. Why did I run errands to Lowe's and Home Depot with Scott that monday? Why didn't I just stay home? Although I didn't go into labor until two days later, I feel like the braxton hicks that day started it all. Up until that point, I did everything I possibly could do to take care of my babies. Even with assurances that these things were okay for a pregnancy, I cut out any medication. I suffered through allergies so I didn't have to take allergy medicine. I cut out caffeine. No tylenol. No hot dogs. No cheese at all. No fish (that was an easy one). Scott wouldn't even rub my feet because we heard rumors that it was bad for pregnancy. That one killed me. My poor swollen feet. And still, with all I did, I still mull over all the choices I made trying to see if there was something that I could have done differently to have prevented premature delivery. And maybe our girls would have had a chance. There's no one blaring event or thing, and I'm so thankful. If I ever find something concrete that can pinpoint blame on, I don't think I could live with myself.

When Rory and Allison passed away, we felt helpless. So many factors that were out of our control. With Casey, we are aware that there risks that she will face that we can prevent. With Casey, we know there are a lot of things that are within our means and we have set out to educate ourselves. And with Casey's immature immune system, infection continues to be the number one concern in keeping her healthy. One virus in particular, RSV, is a particularly brutal infection that threatens preemies.

Which is why we chose to celebrate my 32nd birthday, 5 days before Casey's discharge at a talk at Kapiolani Hospital on RSV. We learned tons of valuable information on how RSV affects babies and why it's so especially dangerous for preemies.

RSV stands for Respiratory Syncytial Virus. RSV is a highly contagious virus that causes infection of the lungs and breathing passages, and is the number one cause of pneumonia and bronchitis in infants under the age of 1. It is very common infection and in adults, it presents much like the common cold. But with infants, especially preemie babies, it poses a much larger threat. I follow the blogs of other moms with preemie infants, and just last week, one mom had to admit her son back into the hospital because he contracted RSV. Thankfully, they were able to treat it with antibiotics and release him. The doctors told us that of the babies who graduate out of the NICU, over half will be admitted to the hospital within the first year. When Casey was a month old, one of her baby friends who had just been released from the NICU was readmitted to the hospital just days later with a fever. We will fight to keep Casey on the better half of that statistic at all possible. And we will need your help.

This is Casey today. She is just a few days away from her due date. She looks like any other newborn baby. She is now 7 lb of chubby cuteness with ten chubby fingers and ten chubby toes.

But Casey is not like other newborn babies. Casey was a preemie baby. More specifically, Casey was a micro-preemie baby. Despite her appearance, the next few years of Casey's life will be defined by the lasting effects of being born extremely premature. She has spent the last three months in incubators, with IV lines in her hands and belly button, PIC lines dumping medicine right above her heart, breathing on ventilators, CPAPs, nasal cannulas, feeding tubes, blood tests, and even two blood transfusions. Casey has come so far. Staring at her sweet chubbiness, sometimes we forget how rough her beginnings was.

Casey is now the size of other full-term babies but her lungs and immune system are still immature. If you picture the lungs as trees with each little leaf representing essential air sacs needed for oxygen exchange, then Casey was born with a bare tree with sparse foilage. She had less mature air sacs and thus had to work much harder to gain enough oxygen. It's a tiring process which is why we struggled to have her gain weight. She just burns more calories than other babies just to breathe.

It will take Casey years before she catches up to other babies. Even when she reaches a year old, her lungs will only have 50% of the capacity than if she had been born at full-term. She already has less to start with and if it's compromised by sickness, mucous, contaminants, she can get very very sick.

Prematurity also robbed Casey of another key factor. Babies receive their mother's antibodies across the placenta. Since babies don't have a mature immune system for the first year or two of life, those antibodies keep them safe. Casey was born 3 months early, she missed out on precious time and has less maternal antibodies to fight off germs.

Any infection, minor or major, poses a larger threat to Casey than to other babies of the same age but born at full-term. Under doctor's orders, we have to quarantine Casey to the best of our ability for the first year of her life. It's especially critical during the next few months until flu season ends (March). Hawaii, with it's temperate climate has the honors of having RSV cases all year round but they are especially prominent during the flu season. Casey qualifies for receiving a shot every month during flu shot that might help alleviate RSV symptoms if she contracts it, but there is no vaccination for RSV. You cannot build up an immunity to it. You can get RSV repeatedly. It's easily spread and so common that it is believed that almost all children get it by the time they turn 2. Adults who have school-age children or work with school-age children often get it, but confuse it with the common cold. The virus is spread through the air in humid droplets and can live on surfaces like door-knobs, cell phones, clothes for up to 6-7 hours.

So, as excited as we are to have Casey home, we know we have to adjust our expectations as parents. I had always pictured dressing her up and taking her to church to show her off. Sadly, every doctor and nurse that talked to us all said the same thing. They advised us not to take her to church. We know how excited our church family would be to see Casey, but it would increase her exposure to germs exponentially as people at church tend to be so friendly and want to love on Casey. I sighed as one nurse practitioner told us to take turns staying home with Casey so the other one could attend church. Hmmm, I'm guessing since Scott is a pastor, it's going to be my turn to stay home all the time.

We really need your help in reducing Casey's exposure to all infections, not just RSV. We have restricted visits to our house for at least the next two months (until 2011), but we need to mindful even when we do have visitors. Please don't be offended if we ask you to wash your hands even if you aren't going to hold or touch Casey. Please understand if we politely decline your request to hold her. We dread having to restrict the very support group that has been there for our family and held Casey in prayers for each of the 81 days she spent in the NICU. But as one of our nurses always says, we have to be the voice for the voiceless. We have to speak up for Casey. It will be hard and the best way you could support us is knowing what poses a threat to Casey's lungs and watching out for Casey alongside of us.

There are certain people who pose a risk to Casey. If you fall into the following categories, please bring it to our attention.

1. You had a cold/scratchy throat/fever/cough/runny nose at some point in the previous 2 weeks.

There's no real way that you can possibly know whether you have passed the contagious stage of any infection. Infections can take up to 2 weeks to fully run their course. And viruses and bacteria are easily spread by transfering between surfaces or through moist droplets being exhaled. You may feel fine but still be transmitting these agents. Don't risk it. Wait until enough time has safely passed.

2. you live with or have close contact with someone who fulfills the criteria above

3. You work in a daycare, you are a teacher, or another occupation that works with young children

The doctors told us that gradeschool teachers most likely come down with RSV yearly because of their job. They may not even know it thinking they just have a small cold.

4. You have small children.

Again, RSV occurs at an alarmingly high rate in young children. One thing the hospital considers with preemies is whether there are other siblings in the household. This puts the preemie at a greater risk. Parents who bring their micro-preemies have had to resort to pulling other siblings out of school and home-schooling them to protect their micro-preemie.

5. You are a smoker

Oh, boy, this is most of my family. This is not an infectious agent, but the factors in smoke damage and suppress lung function. My sister is a lifelong smoker (YOU BETTER QUIT, SIS!!) and has 5 daughters. She has been diligent about smoking outside the home far away from her girls. Even with that, when my baby niece was just a month old, we had to rush her to the hospital where she stayed for a week. The doctors informed my sister that even with all her precautions, the smoke was clinging to her hair and clothes and was causing Chayne's respiratory problems. Yet another reason I hope my family quits smoking for good.

If you meet any of the criteria above, please limit the dangers of exposure. If you're sick or have been sick, refrain from visiting or keep your distance if you should happen to run into us until you are in the clear. If you are a smoker or have young children, take a shower and change into clean clothes before visiting.

We are quarantining Casey and have restricted visitors from our house. Even when visitors are allowed,

1. Treat our house like a hospital.

Everyone must wash their hands even if you have no plans of touching Casey. There are hand-washing stations set up at every sink. Wash hands from elbows to fingertips for 1 minute. And then rewash at least 15 seconds before touching Casey. Use paper towels to dry off.

At home or if we meet outside the house, don't kiss Casey's hands or mouth. She likes to suck on her fingers and will ingest any pathogens that way.

2. Be another voice for Casey

If you see a well-meaning stranger approaching Casey, speak up. Tell that grandma to keep her paws off our baby. =) In the sweetest way possible of course. Or not.

Thank you for continuing to team with us. We feel so indebted. I feel like she's not just our daughter. This community has risen up alongside of us and covered her with prayer and love. You brought her home to us, and you will keep her with us.

If you want to know what else you can do, there are some things that would be an added bonus.

1. Get the current flu shot

This will just help diminish the chances of Casey and also of us coming down with the flu. If we become sick, we also cannot not be around Casey.

2. Get the DTaP booster shot

You might have seen the commercials but there has been an increase in cases of infants with pertussis, whooping cough. The infants catch pertussis from the adults in their lives. Hawaii had one case this past year, and for this sweet family, it was one case too many. Natalie Norton, a spectacular photographer here on Oahu, and her family lost their baby boy, Gavin, this past January. Her blog is a heart-wrenching testament to the importance of pertussis vaccinations. I remember following her blog and instantly knowing I wanted to get the booster shot to keep our children safe. Adults only need the booster shot once every ten years. Just one shot, so simple. Gavin would have turned one this past week. If you're curious, please read their story and leave support on her latest entry.

3. Become CPR certified

Let's surround Casey with a community that can confidently take on emergencies.

4. Be patient with us.

We're new parents. We also have little experience with newborn babies, let alone premature babies. I have created this blog to educate my family and friends who are still learning about life with an ex-preemie baby. We appreciate the advice and understand people are trying to provide comfort, but few have gone through this experience. Casey wasn't just a few weeks early, she was a few months early. She wasn't just a small baby weighing only 4 or 5 pounds, she was a tiny baby weighing only 2 pounds. RSV is just one of the risks that loom nearby because of her prematurity. Micro-preemie babies are at higher risk for cerebral palsy, autism, vision and hearing problems, ashthma, digestive problems, and 40% will exhibit mild to severe cognitive disabilities by age 8.

We pray that we have the serenity to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference.

Rewind: Bath Demo-6 Days Prior to Discharge

2010-10-21T15:12:00.000-07:00

Well, Casey has been home for 4 days...but that's a whole different story. Before we get too far behind, I really want to chronicle Casey's last week in the NICU. It was so busy, a bit chaotic, we didn't get a chance to blog. But we have been so dedicated to journaling her stay in the NICU, I hate to leave out the most exciting part...getting ready to go home. And, if any other moms of micro-preemies are searching for support and an idea of what they might expect with their own babies, this can help. When the girls were born, I took to searching the blogging world to try to make sense of this new world.

Sunday night we had wrapped up infant CPR training taught by Arlene. Thanks to Scott's parents, Scott's brothers, and our Sunday night gang for coming in. We will feel a lot safer with more confident hands around.

Monday night, we came in for a bath demo by Gina. Hah, I realized while reading that back to myself, that the last sentence can be miscontrued. Let's restate. Gina showed us how to give Casey a bath. Now, Gina was the same nurse who was giving Casey a bath last month when we were there to actually see it for the first time. Yah, we took tons of pictures and videos...it was kind of a mass media event. But we probably weren't really paying attention to the details. We were kind of mesmerized by someone's cuteness.

The NICU room is not really set up to function specifically for bathtime. There's one sink for handwashing and we can't take it over because other nurses have to use it. So a table is wheeled over with a small plastic bin filled with warm water. Casey has gotten a little bigger but she still fits into the bin. Gina says she still used it for baths when she took her son home.

I wanted to take pictures so I was in photog-mode. So Gina and Scott gave Casey the bath. Gina showed Scott how to hold Casey's head up with one hand and use the free hand to wash Casey.

Casey squirmed a little when she first got in the water and then she got real mellow. She loved just sitting in the warm water. By the way, check out her pursed mouth in the picture above. I think it's so funny. When it's time to eat, she makes her mouth super small when you're trying to get her to open up for the bottle.

Oh, she was real relaxed. Gina pointed out that we have to clean especially behind her ears and in her neck rolls. Casey is sporting the double chin already. Rock it, girl. I was trying really hard not to be a backseat driver. Now that I've given her baths at home, it is NOT as easy as it looks. But, Scott learned "wet babies are slippery babies." I had to laugh as eventually, Gina had to take over holding Casey, otherwise, Casey was going to get her first swimming lesson. see video below

We save washing her hair for last because so much heat is lost through the head. So we wait until she is almost done, wrap her up in a towel...and then wet and wash her head. She seems to really like this part as well.

Then we dry her off quickly, put cute clothes on, and swaddle her away. Voila. Bath demo completed.

Gina-A+

Casey-A+

Scott-C-

Keao-No credit

CLEAN BABY ALERT!!!
So how are we doing at home. They say to give her baths just when she seems like she needs it, and she's been averaging every other day. So, I have given her two baths. I was really looking forward to bathtimes. I watch my sister and my nieces and it looked like such a fun bonding time. And I have this uber cute Fisher price bathtub that Auntie Trang from California gave to us (thanks Trang!!) that I have been waiting forever to use. Hmm, bathing newborns is not that easy. The first time, the bathtub was too big so I had to ditch it halfway through. The second time, I Macgyverd the tub up by putting in a folded up towel in the water to act as a cushion. And then Casey mistook the tub for a toilet. I am sure third time is the charm.

Next on discharge countdown...learning about RSV and Rooming in.

37 Weeks Gestation-Countdown Commence!!!

2010-10-11T21:08:00.000-07:00

Casey 37 Weeks Gestation
5 lb. 7.9999 oz (birth weight 2 lb 4 oz)
10 weeks 5 days old
75 days in the hospital, 22 days until due date

We're freaking out just a bit. When the girls were born, we were told to expect a 10 week stay in the NICU. 5 weeks later, things didn't seem to have progressed that much and we were told that 14 weeks total would be more realistic. There really is something to be said about gestational age. Casey hit a certain age and suddenly things have started to rocket forward. If you look at the criteria for discharge from the NICU

1. Eat all meals by mouth (no feeding tube meals)- CHECK!!!
2. Maintain body temperature - CHECK!!!
3. Able to sleep and eat with no oxgyen aid- Thanks to some innovative thinking with thickening her milk so she's less likelly to choke on it-CHECK
4. Go 7 days with no apnea or brady spells. Usually the countdown is only 5 days but because of her micro-preemie status, the staff feel more comfortable with upping that probation period to 7 days. Casey is halfway through the countdown!!!

If all goes as planned, Casey might be home as early as this Friday!!!

We know that it's a flexible date, things pop up here and there. If she were to have an apnea or brady spell, the 7 day countdown would reset back to zero. This morning's meeting revolved around her weight. She not only has NOT gained weight this past week, she's lost weight. She got up to 5 lb 12 oz and then she's lost weight the past couple days. They will not send home a baby who is losing weight. There's not much more we can do. Her milk is already fortified to add more calories. We'll have to see what happens tomorrow. I'm still pretty shocked that she's doing so well off oxygen. I think we all really expected Casey to have to come home on oxygen.

Casey has her job to do and Scott and I have jobs of our own. Some things that we have had to tackle this past week.

1. We learned how to install Casey's car seat and we had it inspected by certified technicians. It was a free service offered at the Kaiser Mapunapuna Clinic to anybody, including non-Kaiser members. Our technician also happened to be a NICU nurse, Gina. They reallly care about keeping babies safe in our cars.
2. We had a infant CPR training at the NICU. It is NOT a certification class, although, we are planning to get certified (we're getting a class together so let us know if you want to take it!!!). But this training offered by the NICU was to teach us how to perform CPR and also to rescue an choking infant. They want us to practice constantly so we feel comfortable performing these life-saving measures...and it gives us a crucial lifeline until the ambulance can arrive.

The training was at the NICU and we were allowed to bring in family and friends, anyone who might be around Casey or involved with taking care of her. We originally told Arlene we would have 7 people but we ended up with almost 12 people. Poor Arlene had to contend with our boisterous Sunday night crew, but she had us rotating with the dummies and kept us on track.
The group started to pool in the hallway before class began.

Only Mikey, the straight A student, made sure to be ready and in the classroom on time. He's even reading the training material ahead of time.

Arlene patiently explaining the dos and donts of CPR.

Next on our list, Casey has to take the carseat challenge. I will take in her carseat tomorrow and have it adjusted to her size. She just barely makes the minimum weight requirement for the carseat. Thank goodness. Otherwise, you have to get a special carseat for babies under 5 lb. After she's fitted into her carseat, they have her sit in it for 90 minutes and watch her vitals to see how she'll respond to being upright in a carseat for an extended drive.

The following pictures are brought to you by Arlene. She's an amazing photographer and creates these spectacular designs. We have one she made on our fridge that looks like a professional birth announcement.

10 Weeks Old and Turning the Corner

2010-10-07T17:58:00.001-07:00

It's getting easier to go out and about as most people know what happened with our triplets. Still, there are awkward moments. I ran into Scott's high school choir director who Scott stayed in touch with over the years. He was pushing his kids in a stroller and did a double take. It's obvious I'm not pregnant anymore...so he exclaimed "You had your kids...how many were you guys having again...2....3?" Ah, so...someone we haven't talked to since the pre-birth days. It was extremely uncomfortable...not that I can't do it. It's just not memories you want to revisit in the midst of efforts to have a normal day. And it's not a story to tell in passing while standing in a crowded store. My throat tightened up and I choked out as quick as I could "We had three but two passed away. One is still in the hospital though and doing great." I must have muttered it because I think he misheard and said "I'm sorry...but oh, are the two going to come home soon?" I just couldn't correct him and just nodded. Scott and him will touch bases again and he'll find out soon enough.

Then the lady who renewed my hospital parking pass was one I hadn't seen before. Casey still pops up in their system as Triplet Baby C so she asked while filling out my new pass "So are your other two babies already at home." No, they passed away. She apologizes nicely and then there's just silence. I get my pass and I'm on my way. Thankfully, there's less and less of these awkward moments. Hopefully, we're running out of random acquaintances who are just outside of the loop. That's one of the reasons we created this blog. If we have time, we love to answer questions and talk about our experiences. But, we know we can't talk to everybody who wants to know and who cares. I'm always touched when people refer to my blog in conversation...like they know how much Casey weighs or ask about her bottles. I realize that they're caught up to date with Casey and it's so much easier than having to give 2 months of back story. Speaking of Casey.

Casey
5 lb. 5 oz (birth weight 2lb 4 oz.)
16.5" long (birth length 13.95")
10 weeks 1 day old
36 weeks 3 days gestation
71 days in hospital, 26 days until her due date

We've learned a new phrase used in the NICU, "turning the corner." We've already learned "NPO" (nothing by mouth), "feed a rock," "nippling." This past weekend we started to hear this new phrase..."turning the corner." Apparently, our little girl has turned a corner. Slugger who has been struggling with breathing and oxgyen turned a corner. The doctors weren't totally sure why she was so reliant on breathing aid so they decided to wean her off slowly and see how she responded. One day, they moved her cannula pressure from 3 to 2.5...the next day it was 2.0..the next day 1.0. We were quite surprised by the quick drop in numbers. Scott kept asking "what happened to 1.5?" Monday, Dr. B. just said 'why don't we try taking her off of the cannula and see what happens.' And so they did.

Unbelievably, Casey is now off of oxygen. Shocked the heck out of us. And someone just said, babies can hit a certain size or age or just time when they just turn a corner and then they start progressing amazingly. And Casey seems to have turned a corner. The first day they were a little concerned because she was breathing fast, a sign that she was overworking to get enough oxygen. But the next day, she had a great respiratory rate and her oxygen levels look great. She's breathing room air just like you and me. She's not out of the woods yet, she still occasionally needs oxygen when drinking from a bottle. Sometimes her blood oxygen levels drop and she can't bring them up on her own.

She's been drinking half of her feeds by bottle. Today, they decided to let her try to take each feed from a bottle...just depending on how awake she is. We are still struggling with the meals. Preemies have to learn to suck-swallow-breathe. Slugger goes suck-suck-suck-suck-breathe. We've learned that we have to pull the bottle out if she doesn't breathe. But now, she's having trouble because she's not swallowing enough and she's been choking during her feeds. This past week, my friend Nalani was with me when Casey had a bad choking episode. I think Nalani was a little freaked out. I feel comforted by the fact that we're surrounded by nurses and Casey has monitors so I know her heart is beating and she's breathing. But even I got worried as her oxygen levels that should be in the high 90's dropped to the 60's...then the 50's...and it went into the 30's. The nurse had to grab Casey out of my lap, patting her back, and give her the oxygen mask that is by Casey's bedside. Casey looked like this tiny little, helpless doll as it seemed to take forever for her blue lips to 'pink up.' Only when Nalani and I were leaving the hospital, did I realize how drained I felt just from the stress.

So, the staff is working on ways to help Casey work on her coordination. They're adding thickening agents to her milk so that it slows the milk flow out of the bottle. They tried it today and said Casey responded to it super-well. It's very normal for preemies. If this is the worst thing we have to tackle...we'll take it.

Besides the eating/choking thing, Casey is doing specatcular. We've discovered she's a morning baby. After her 9 am bottle, this girl doesn't want to go to sleep. Have no idea where she got to be a morning person from, it's definitely not from her parents. She's still not a crier. She grunts A LOT. She's also squirming. And she now gets a little prune juice twice a day to help with regulation. I had no idea you could give babies juice. But it is a tiny amount and it seems to be doing the trick. The girl is producing methane like nobody's business. She'll hate me one day for putting that on the internet. I love you, Casey, but it's true.

Imagine my surprise when I walked into the NICU after the girls were born to discover my high school classmate. This is Heather. She's awesome. She taught me and Scott so much about caring for a preemie baby. She was actually the first person who ever showed us how to rub Casey's head when they changed her CPAP gear.

This is Dina on the right. She was Allison's nurse when the girls were born. She was in the delivery room and she took care of Allison right away.

This is Diane, the Nurse Practitioner. She's checking out Casey's lung and bowel sounds.

Casey is a real mellow baby. She's eyeing Auntie Diane, probably wondering what's going on.

Praise Report:

-we have a 5 1/2 pound baby

-her lungs are so strong

-we're bonding more with her...I swear she's starting to recognize us. Maybe.

Prayer Requests:

-pray for Micah (our friend's baby mentioned in the last post)

-pray for all the babies in the NICU and their parents

-Casey to be able to eat without choking/gagging/turning blue

Approaching 36 weeks Gestation- Casey's Friends

2010-10-03T21:07:00.000-07:00

Casey
9 weeks 4 days old
35 weeks 6 days gestation (about 9 months pregnant equivalence)
Weighing in at 5 lb 3.02 oz!!! (birth weight was 2 lb 14 oz)
67 days spent in the hospital
30 days until due date

After talking to Kanani today, Casey is accumulating more and more nicknames. I think we'll always call her Slugger, but since Scottie won't let me call her princess..."sunshine" will be my substitute endearment. "Kala" if you want to be sovereign. And she is the sunshine in my days.

Casey has been picking up steam. As of yesterday, she has started taking half of her meals by bottle instead of feeding tube. That's 4 out of 8. They've also lowered the pressure on her cannula from 3.0 Liters to just 1.0 Liter. We've also been trying to nurse once every day to see if she catches on. Every day is different. Yesterday, she was a champ. Last night and today, she was tired out and struggled to finish her bottles. It's a balancing act of trying to ask her to do more and lessening the help she gets. We had some gagging/choking episodes during last night's feed. When she gets tired, she's more likely to choke or pause her breathing. It's the longest seconds ever and it's absolutely horrible.

But she's doing just well enough that every day brings another change, because she's handling them. She's broken the 5 lb barrier. We probably won't need a special car seat just to bring her home. She's now the size of small full-term babies. Scott and I were talking that we feel like we're holding a baby now. She's a little more sturdy. When she was smaller and sicker, we weren't so much holding her as more like laying super still letting her lie on us...tense because we had to hold the hoses for her CPAP. Now we can hold her and snuggle. It's beyond wonderful

This is one of Casey's many extraordinary nurses, Leila. Leila is a higly energetic, sweet nurse who loves to talk to the babies...a lot. I think when Casey comes home she is going to be hearing Leila in her sleep. I think we might too.

Here's Leila chatting with Casey. I grabbed the chance to bring my camera in and get some great face shots of Casey. The last pic is one of my fave.

Casey has a lot of friends in the NICU, other babies whom we have become familiar with. Casey is one of the few long-timers. Most babies are in for just a few days of monitoring so Scott and I get a little attached to the ones who stay longer. We get sad when they are moved to a different room and we don't get to see them or chat with their parents anymore. I just read on fb from another preemie mom that her baby boy, who we thought might be Casey's high school prom date one day, will be going home soon. We're so excited for him and his family, but Casey's little group of friends is going to get a little smaller. I often think how weird it is that these babies will grow up never knowing that they were side by side for a month, growing up in the NICU together. I wonder if they'll ever meet by chance...or even pass each other randomly on the street. Thinking nothing of it without ever knowing that they were roommies in the very beginning.

I also think of other families that have been brought into our circle and their children have become a part of Casey's circle. When we first gave birth, Russell Kimura emailed us a link to a blog of another little girl born extremely premature. The days were chaotic so we only glanced at it. It was a whole month later when two of the nurses, Arlene and Gina, both brought up the very same family and blog. We just had to check it out since everyone seemed to know this little girl. Reece was born at 1 lb 4 oz at 24 weeks gestation and her blog follows her journey this past year. She also struggled with oxgyen like Casey so I could read what the next few months might be like for us. Reece just turned 1 yesterday!!!

Happy Birthday, Reece!!

After hearing about Reece and her mom, Jessica, for so long, we finally got to meet them today and joined them and other friends for lunch today. It was awesome to hear encouragement and just have someone who understands the language of a preemie baby. And to see Reece, who is cute as a button and studies you intently with these eyes that just take everything in.

And now in our thoughts is a little boy named Micah. We haven't met little Micah yet, and he's only a week old. But today we prayed with his father at church. His father who stood there broken and open. I only want to share minimal details, it's not my story to tell. Micah was born a week ago and MRI scans revealed that he had suffered a stroke in utero. A blood vessel had burst in his brain and they won't know the true extent of damage done...they can only watch and pray. Tears just started flowing as Micah's dad choked out the details and all I could do was hug him and say "I'm so sorry. It's not fair." Every child, every life is a different story. Even with all we've been through, I can't imagine what this family is going through. Honestly, after all we've lost, I want this prayer answered...I want to witness the miracle of this boy's healing. I want all of these babies to grow up, to play hide-n-seek together, to torment the workers in the children's church nursery every Sunday. I want Casey to grow up healthy and strong...but I also want Casey's friends to grow up with her healthy and strong. I want it all, God. When people say they don't care if they have a boy or girl, that they just want the baby to be healthy...that's not just a politically correct statement.

Can we please pray for Micah? I admit, I've been struggling with prayer the past two months. But this family needs support, needs healing. I can do nothing but pray for them.

9 Weeks Old

2010-09-29T18:28:00.000-07:00

Casey
9 weeks old
35 weeks 2 days gestation
4 lb 12.5 oz

Ah, today is a good day.

Casey is doing really well drinking a meal from a bottle twice a day. I've started to get up early so I can make it to her first bottle of the day. It's quite entertaining to be in the NICU in the morning as the doctors, nurse practicioners, and nurses have their big meetings in the morning. Babies have to be monitored nonstop so the meetings take place right there in the middle of the babies. I'm there in my old lady white chair holding Casey feeling like an intruder but no one really pays me attention. I'm usually in my own little world but I realized that someone was saying my name. Pam was looking right at me and said "Do you guys have a room ready for her?" I then realized everyone in the meeting was now looking at me as I mumbled "Ummm, not quite...almost?"

Casey has a lot of tasks to conquer before she can come home. We are looking at her due date as a rough estimate of her coming home...but it could stretch weeks beyond that or a few weeks before. You just don't know how quickly they'll tackle their tasks and if they will have setbacks or not. Pam said "She could take a while or she could be home in as little as two weeks. You have to be ready no matter what." Two weeks!!! What!! I mean, a month is more realistic but I understood what she was telling us. Oh geez. It's starting to be a little more real that she will come home...and then it will be up to us to take care of her all by herself. She might still be on medication, she probably will come home on oxygen. Her nursery is half complete. We haven't picked her crib up. I have no clue what we have and what we don’t have. Oh, so excited and so nervous. She still seems so small and fragile.

What does Casey have to do well before she can come home?

1. Take all food by mouth, that equals 8 x a day.

Right now, she's been taking two meals a day and the rest are still by feeding tube.

2. Maintain her body temperature.

She's been doing it for a week. Yah, Casey!!!

3. Come down on the oxygen.

She's on room air (21% oxygen) and the cannula is just supplying pressure to open up airways. But she does need her oxygen to be bumped up to 25-30% when she's being fed or fussed with (diaper changes and physical therapy).

I had a great time with Casey this morning and am waiting for Scott to come home so we can go back tonight. I got to see what exercises she does in physical therapy. And basically, I sat there holding Casey and pestered her nurses with questions. We’ve become so dependent on the staff there. In the very beginning, my dad told me not to worry if I couldn’t make it every day. But then Allison passed away, and I remember thinking that I was sooooo thankful that of her 19 days of life, I was there for every day of it. 19 days is just a blink in a year, but it was the only time we had with Allie. We became even more determined to be there as much as we possibly could for Casey. Thus that hospital room has become more of a home to me than my own home. And the nurses have become our extended family.

When I broke down one day uncontrollably while holding Casey, I was surrounded instantly with hugs…suddenly water and chocolate kisses (the magical cure for everything=) were being thrust into my hands. My big sis is the mother figure in my life but she’s having a rough year. She doesn’t have a phone anymore so we can’t talk as much as we used to. Casey’s nurses are helping coach me through my first steps as a mom. They give me advice on the best blankets to use, the best baby carriers, how to make room in your freezer for milk. They’re coaching us on how to feed Casey, how to take care of her. And they make me laugh so much. Like Amy, who I love because she is so funny and she doesn’t even realize she’s being funny. Amy, who misunderstood me when I said Scott would marry the nurses if they ever needed it. Her eyes got super big and I realized I had to clarify that he would be the marriage OFFICIANT. I can’t believe she thought I was proffering up my hubby to be their husband as well. Boy, oh boy, Casey, I will miss your Aunties-in-scrubs when you finally come home. I am going to make it a goal to take pictures of all of Casey's nurses over the next month.

Well, she could be home in 2 weeks....4 weeks...7 weeks...who knows? But you won't have to wait any longer to see her, here's today's pics:

Hi Auntie Amy. Thanks for taking such good care of Casey today. And for not taking me up on my offer to marry my husband.

Praises

-she has been finishing her bottles completely

-as of yesterday, she is completely on the nasal cannula (no more CPAP scuba gear)

-they've packed away her isolette, she's been in the big girl crib for a week

-we have been blessed by the thoughtfulness of our friends and families...food, flowers, 2 month announcements, stuffed turtles, text messages and emails...just this week alone. We can't write the thank you's fast enough.

Prayer Please

-continual weight gain as they will have to wean her off of her high-calorie milk eventually
-stability in her breathing during her meals

-development of lungs, they warned us to expect a little decline now that she's off the CPAP

-more meals by bottle please!!!

The Heart of Rory: Chapter 1

2010-09-28T21:04:00.000-07:00

So few people got to meet our daughter, Rory. It was such a shocking surprise that my family wasn’t even there on the day of our girls' birth day. But, I didn’t want people to miss out on my amazing daughter and promised to write her story, but couldn’t bring myself to do it until now.

I knew my daughter long before she was born. I saw her pug nose and adorable profile on ultrasounds, her dainty fingers waving at us, she always managed to stick a foot or elbow in the picture when we were trying to look at her sisters. I sang to her and talked to her while she jumped around and kicked me in the side. I laughed as I tried to sleep on my side and she used the mattress as her jumping board. She was the first one I felt move long before her sisters got in the mix. She bounced back and forth between her sisters, the middle child who I always thought of as the big protective sister.

We didn’t know we were having triplets until almost the end of the first trimester. We had several ultrasounds, more than the norm, but we just looked at the two sacs never thinking one sac could have two babies in it. I don’t know who we were seeing, Allison or Rory, but I suspect that they were taking turns being the star of the day. It was the 10 week ultrasound that the tech gasped “I’m seeing three babies” and turned the monitor for us to see. There were three little tiny babies, they looked like chubby gummy bears with short, little arms and legs. Allie and Casey were still but Baby B was my lil Mexican jumping bean. Despite the shock of just learning we had triplets, I broke out into laughter as I saw my baby moving for the first time. It was amazing.

We were immediately sent to see a doctor for our high risk pregnancy, Dr. O. He immediately recognized that Rory and Allison were sharing a placenta and Allison was measuring behind in size. We were very concerned about Twin To Twin Transfusion Syndrome, a complication affecting identical twins sharing a placenta that is usually fatal for both babies. The girls needed to learn to share oxygen and nutrients equally and even though Allison was always clearly the smallest baby, Rory shared with her sister. TTTS never developed.

At the 12 week ultrasound, the doc measured the fluid at the back of the babies’ necks. Rory’s NT measurements was high and he couldn’t measure Allie because she was too squished for a good view. High NT scores, or excess fluid at the back of the neck, can indicate chromosomal disorders or heart problems. Usually, amnio tests are scheduled but this was too risky for triplet pregnancies. I started to worry. If it was a chromosomal disorder, identical twins Rory and Allison would both have it. We could do nothing but wait, and still, TTTS was our biggest concern.

Each doctor visit presented a different problem with the girls, but we kept overcoming through it all. In June, at five months pregnant, we hit one that we couldn’t knock down. A scan of the girls hearts showed some abnormalities with Rory’s heart and we were sent to a cardiologist, Mr. S. We were so confident walking into that appt. We felt we could deal with whatever Rory had. A lot of children have holes in their hearts that close themselves, maybe she might need surgery, maybe we would have to keep Rory from playing active sports. After a 2 hr scan of all the girls, the cardiologist asked us to step into another room. He sat down and laid out exactly what was wrong with Rory and we silently listened in shock.

I remember just trying to memorize every detail of what he said as he described the flow of blood through the human heart and body. My brain was working overtime recording each term he used, each piece of info he said. Blood enters the right side of the heart, flows to the lungs and back to the left side of the heart which pumps it to the entire body. I grasped that he was telling us that the left side of Rory’s heart was enlarged and scarred, that most concerning, the aortic valve where blood leaves the left side of the heart to oxygenate the entire body…that valve seemed to be completely closed. I heard the term “aortic atresia.” Dr. S. kept talking.

He started to outline what would happen to Rory. 1. She would pass away in the next few months before she was born. 2. She would pass away right after birth. I sat there numb…and he turned to other things about her heart when I realized that there was no option #3. He said that there was fluid around her heart indicating that my little bundle of joy at 5 months had already started to experience cardiac failure. It hit me that my baby wasn’t just going to die, but she might have already started. I remember apologizing “I’m sorry, I think I’m going to cry.” And then I lost it, wailing in that tiny little room. I felt so bad for Dr. S. who became a regular part of our life journey from that step forward.

June 19 2010

That was the first crack in my heart. My heart started breaking that day.

I thought I had composed myself until I felt her kick. At that point, she was the only one I had felt move and she moved all the time. She was alive. She was having a party in there. My poor little girl was living it up and she didn’t know what lay ahead for her. She didn’t know that her heart was giving out on her. She was so full of life. Scott and I went home and silenced our phones, just sitting on the couch together holding hands. I never knew when we would have an ultrasound only to find that her heart had already stopped. Scott hadn’t felt them kick yet, so we sat there with his hands on my belly. I told him “you have to feel her kick. You just have to before …” and I wouldn’t finish the sentence.

Congenital Heart Defects affect 1 out of 100 babies born. Some are mild and self-resolve. Most of the time it is genetic, but for some unknown reason, a heart defect can occur randomly. The leaflets in Rory’s aortic valve were fused and did not let blood flow through. Blood flow to the outside of the heart was diminished and scar tissue webbed across the outside of the muscle constricting it’s contractions. The pressure actually forced blood to flow backwards out of the left side and the left half of the heart was becoming enlarged and beat out of rhythm. I had to ask, how could my baby be alive. In the uterus, her little body was saved. She got her oxygen from me, not having to send blood to her lungs, and her right side of her heart was sending that oxygenated blood to the entire body. She was growing on half a heart. He said as she continued to grow, the stress it placed on the heart could be too much and she would pass away in utero. If she made it to birth, there is a hole that connects the blood flow from both sides of the heart. The hole closes after birth, and Rory would pass away.

There have been attempts to open heart valves while the baby is still in utero and it has had some success. But it was not an option for us because it resulted in infant death more often than success. We couldn’t risk her sisters. There’s also a three-surgery treatment during the first year of life but we would have to travel to San Diego while I was still 5 or 6 months pregnant and be prepared to stay there for at least a year. Our cardiologist presented our case to San Diego doctors while Scott and I struggled to conceptualize how this journey would work. Where would we live? Who could we stay with? Could I go up by myself at first so Scott could keep working? How were we going to take care of the other two girls while Rory was in the hospital? And then our cardiologist broke the news to us. Surgery on a newborn baby heart needs a big enough heart. Rory, as a triplet, would be born a preemie by nature. The doctors believed she wouldn’t be physically big enough and as a preemie, wouldn’t survive the trauma of the surgery. The night before the doctor’s conferred, we had simply prayed that there would be a clear answer. And we now had one. We couldn’t save our daughter. We had rejoiced so much that we were being blessed with three girls. But being a triplet ruled out what few options Rory had.

They told us we could stay here in Hawaii with our support system, and offer comfort care when Rory was born. Making her happy and comfortable, giving us time to be with her until she passed away. Scott and I asked ourselves all the time “If we knew where this journey of parenthood was taking us, would we still have have chosen to take that first step?" We both adamantly agreed without hesitation. If the only time we had with her was when I was still carrying her, we would cherish every day we had. I didn’t even know how to begin to prepare for their arrival because I knew I would have to say good-bye to her. So we lived for the present. I sang to my girls, I wept as we listened to our favorite worship songs “Amazed,” “One Thing,” If I was awoken in the middle of the night by Rory kicking me, I stayed awake and smiled, enjoying the evidence of my rowdy daughter. And I tried not to think about what lay ahead for us.

This is just the back story of Rory's heart. Her story is just so beautiful, there's so much I want to share. I'd like to tell you next time about Rory's heart for her sisters and how we had to say hello and goodbye to her in one breath.

I love you so much, Rory. You were woven together with joy.

Approaching 35 week

2010-09-26T21:04:00.000-07:00

Casey turns 35 weeks old gestation in the next few days. Most preemies go home at 35 or 36 weeks old. But Casey is not most preemies. She's a micro-preemie. So at 35 weeks gestation, we see huge steps forward in development but her journey is just longer than the babies next to her.

Casey
8 weeks 4 days
almost 35 weeks gestation (8.75 months pregnant equivalent)
4 lb 9 oz (birth weight 2 lb 4 oz)
60 days spent in the hospital

This week we had a sweet surprise waiting for us. Somehow our nurse Leila saw us parking our car from Casey's NICU room and was waiting for us. She had Scott cover my eyes as we walked in and we saw Casey...in a big girl crib. Well, a NICU 'big girl crib" which is really just a plastic bin with an open top that our baby now calls home. No longer is she in the plastic isolette cave.' She's hanging out with the big boys now. In fact, her two roommates are two baby boys about the same size as her. This means no more heated bed, it is now up to Casey and being swaddled with two blankets to keep herself warm. We were told to not be surprised if she had to move back to her isolette but she's been giving off heat waves and has remained in her new bed.

Today, Casey had a not so nice surprise waiting for her. She turned 60 days old so it was time for vaccinations...3 different shots in her thighs. When we were approached with the consent forms, I was told that all babies have this option once they hit two months. I asked "yah, but she's not a real 2 month old. She's not even at full-term yet." But, no, my little 4 lb 2 month old has to contend with babies twice her size. We wanted to be there to comfort her although Scott was concerned that she would associate his presence with the pain. It fell to Nurse Laura and Nurse Maya to do the dirty deed. Another nurse, Alex, just happened to walk away but backed out when she saw it was shot time. She told me that when she has to administer it, she would put on a mask to disguise herself so the baby wouldn't know it was her doing the mean thing. We were all apprehensive. And Casey did cry...a heart-wrenching round of maybe 5 cries...and then she was pau and she konked out. I think we and the nurses took it harder than she did.

I was telling a friend that she nippled or bottle fed once a day and he asked "so she just gets all her food once a day in a big bottle?" So, let me clarify. She gets fed every 3 hrs = 8 x a day. They're all delivered into her stomach via a feeding tube. Once a day, Casey drinks one of those meals by bottle. She did so well, that they have moved her to two meals a day by bottle. I actually got sick this past week and so I had to mask up and not hold her for most of the week. It was torture, I just miss holding her so much. So it was up to Scott to take over learning to feed her by bottle. We're still having to work with her, trying to get her to pace herself...if you let her go, she'll suck and gulp until she turns blue. She gets so determined that she forgets to take breaks for breathing...I'm not kidding.

It's a learning process for us. It's vital that we monitor her to force her to take breaks.

First. The struggle to get the nipple in her mouth. She loves her pacifier, she loves to yawn. As soon as you put the bottle to her mouth...bam...her lips are pressed tightly closed. Denied.

2nd. You get the nipple in but you have to make sure that her tongue is under the nipple so she gets suction. You try to angle the bottle to get a good look to check... and the bottle pops out and you're back at step 1 again.

3rd. Now the nipple is in place. Nothing. She's now playing possum. Is she even awake?

4th. She starts to suck and bam...milk is now disappearing from the bottle. Hmm, she should take a breath soon. The nurses taught us to kind of count to 5 or 6 and tip the bottle if she doesn't breathe. It takes any milk out of the nipple to stop the flow of milk. Doesn't really faze her, she keeps sucking. This continues for forever until she finally stops and you see her take a few breaths.

5th. Now you have to determine when she's taken enough breaths (if she has at all) to sustain her for another round of drinking. She's hooked up to a machine that tells us her blood oxygen levels. Unfortunately, the nurses tell us we have to learn to "watch our baby." They're trying to teach us what she looks like when she starts turning blue.

So now, Scott and I are playing a guessing game. "Hey, I think she's blue...she's blue!!!" Look up...oh, the monitor says she's sailing at 100%. After these four or five of these false alarms, the nurses point out that the NICU walls are painted blue so we may be dealing with some color interference.

But occasionally, her oxygen levels do drop drastically, or her heart rate plummets to half it's normal rate, or she starts to gag or choke. And then the fear grips you as you tip her forward to clear her airway and wait anxious seconds. Still reeling from holding her sisters who passed away in our arms, my heart feels absolutely frozen as I watch her little chest rise and fall as she struggles to catch her breath. And then she's back to good and she continues devouring her meal like nothing happened. I am a complete backseat driver when it is Scott's turn to feed her, but it is sometimes a huge relief when he does it. He's so laidback and confident, he is way better at it than me.

Scott coaching Casey through her meal. By the way, Scott has a blog today giving tribute to one of Casey's awesome nurses.

I so wanted our girls to have Scott's mouth. I'm not fond of mine. My upper lip disappears when I smile. I don't know why, but this whole time I thought Casey had my mouth. Now that she's spending half the day on the cannula and we can see more of her face...she totally has Scott's mouth!!! Yah, want the proof? Here's her frowning with a perfect, upside-down crescent.

Okay, Scott...let's see the frown. Perfect match.

I had to borrow pictures from Aunty Crissy since I didn't really take any pics this week. Here's Casey in her big girl crib.

She seems to be having a stare contest with Uncle Todd. Who's winning?

Here we girls are having a great time. We've kind of given up on kangaroo-ing for now. She gets squirmy and likes to be swaddled.

One of my fave pics. Uncle Jasen and Uncle Dural came to visit. I love the matching outfits.

Praise Reports:

-the diuretics seem to be working. Her oxygen requirements are now usually around 21-22% during rest and 30% when we're bottle feeding her.

-she's now on the CPAP half the day and the cannula half the day

-they've lowered her CPAP pressure to 3 (it started at 5)

-she's doing two bottle feedings a day and she may move up to three a day

-she survived her 2 month vaccinations with surprisingly little fuss

-she's been keeping warm with the help of clothes and blankets

Prayer Requests:

-that she's able to keep up with more bottles during the day.

-that she needs less oxygen support when she's feeding

-protection over our family from any sickness or germs

Joining the Club

2010-09-26T20:46:00.000-07:00

I'm from the Big Isle. But I lived in the dorms up at Kamehameha Schools from 7th grade on. The dorms have you on pretty rigid schedules and restrictions. Friday nights bring a small iota of freedom as you're allowed to roam free albeit on campus from 3 to 10 pm. The campus which sprawls across the mountainside (look up next time you're on the H1 near the Likelike Hwy) was our playground. Our dorm was surrounded by four boys dorms and the laughter of boys and girls playing volleyball outside scented the air.

And, with all that freedom, somehow one particular Friday night found me and my two besties, Nalani P. and Kelii K, holed up in my room entertaining ourselves. We were getting the biggest kick out of writing sprawling words on our legs with Elmers glue. We would let it dry and then peel them off our legs in long pieces. Hilarious, huh? Our dorm advisor, Mrs. P., who also was the mother of our classmate, Jay, was on duty that night. She peeked her head in and this coiffed, conservatively dressed mother-of-two laughed and said "wow, you guys have no life." There's nothing like hearing that from your classmate's mom.

Dorks that we are, we took that and figured we might as well own who we are. We called ourselves the 'no-lifers club.' We bragged about our club and we were pretty strict about accepting new members. Reject people from joining and you'd be surprised at how exclusive and cool your club becomes.

Unfortunately, in life, there are just some clubs that you will never want to join. You never knew some of these clubs existed until you find yourself a life member. Sadly, you may even recognize some familiar faces in these clubs.

Two years ago, now almost three years ago, Scott and I found ourselves in one such club when we started to start our family. We got pregnant after four months of trying, only to experience a miscarriage in the first trimester. We never even told most people. We grieved and then we started trying again. But a year passed and we found ourselves in a new world. The world of IF. Infertility. There are several estimates but one says that 1 in 6 couples will have some type of difficulty conceiving a child. What!!! How come no one told us. I felt lied to all these years. I remember the fears impressed upon you in high school by health education teachers. Have sex and you'll get pregnant. All you ever heard from expecting couples was "we weren't even trying." "It took us one month of trying." "I just missed one pill and tada."

Now when people asked us why we weren't having kids, I tried being honest. "Actually, we've been trying but we're having trouble." That certainly sucked the wind out of most people's balloons. But something else happened. People started to open up. They would whisper "It took us two years too and I cried every month." "We had three miscarriages before our first son." "I was on clomid when I had ____" Suddenly, a whole world opened up and I found saw how many people were in the club with me. If you were like the old me and never heard of this club, try to google some of these terms:

TTC (trying to conceive)
BFN (big fat negative result on home pregnancy test)
BFP (big fat positive; most searches reveal people hoping for these...not actually having one)

Here, or google "9 dpo BFN" which stands for a negative test result 9 days past ovulation. There's a thousand of forums of women pouring over their possible symptoms and offering support after failed tests, blogs of women pouring out their hopes and dreams for babies month after month. This club even comes with its own language. If you never look around, you might feel alone never knowing how many people struggle with the same things you struggle with. It's the secret club, a not-so-cool secret club.

I thought that was the worst club to be forced to join. But this year, I've stumbled into two new clubs.

When we discovered Rory had a heart defect that pretty much ensured her death upon birth, I stumbled upon blogs of other moms who faced similiar fates. Mothers who learned their babies had serious heart defects and chose to carry on with their pregnancy. I was struggling with how to deal with the pregnancy. How did other mothers carry on carrying a baby they would soon lose. Were we supposed to plan for three babies? Do we buy 1 or 2 or 3 cribs? If we bought 3 cribs, how could we endure having to return or sell an unused, empty crib. If we bought 2 cribs, did that mean we were giving up any hope...giving up on God...giving up on our child? So we bought none. How did moms endure it when well-meaning acquaintances or strangers on the street asked questions about our pregnancy or the triplets? So many freely offer their advice on raising three babies. Offering gently used baby gear and clothing. Offering to bring us meals. Even giving suggestions on triplet names. And I would nod and say nothing, knowing in my head but not wanting to share that we most likely would have only two babies the following year. Never knowing that in fact it would only be one. I found online two other women who discovered their babies had heart defects and had to say good-bye to their children shortly after birth. Moms who, instead of planning baby showers, were planning funeral arrangments alongside planned C-section dates.

Now, with the loss of Allison, in my dark hours, I find myself searching for the stories of others who have lost a child, lost a baby. There's a whole network of grief blogs...moms who lost their babies to prematurity, or unexplained circumstances. I find myself reading their stories and crying, grieving their losses as I grieve mine. I've learned that four women I have met at church have all lost a child, either at birth or during the first year. I never knew. I never thought to look. I look at life in a different way. On one of the blogs, I read someone realize that it was futile to wish that things would go back to the way they used to be, because they're not the person they used to be. That's me. I'm not the person I was a few months ago. I'm different than what you might remember. I wish with all my heart I could be who I used to be. I miss that person. I miss being that person. But I'm in a new club.

...Wait, there's one more club I did join this year that I just have to mention, before you start feeling sorry for me.

I'm a mom. It doesn't feel real yet. I saw someone post "I can't believe I'm a mom" on facebook and realized that I haven't allowed myself to feel like a mom yet. Letting fear govern me. Not allowing myself to feel like a mom until "Casey comes home" "until it's safe." Scott and I kept asking Casey's doctor, expecting her second child herself, when we could consider Casey safe, when we could stop worrying. She refused to answer as a doctor, instead telling us as a mom, you never stop worrying. We're parents. That's one club that I will proudly boast about and I would hope all applicants be accepted.

Casey's First Bath-Approaching 34 Weeks

2010-09-19T00:16:00.000-07:00

Thanks to everyone for their continued support and encouragement. This past week, our good friend, Ted, had a family emergency. His father actually suffered three separate heart attacks and was medevac'd from the Big Island to Kaiser Hospital. Now our visits to Casey are double-fold as we now can spend time with Ted. And it was the first night that we found out about Ted's dad, we met Ted in the waiting room. Our other good friend, John-John, was already there and we just sat with Ted. I watched Ted and the emotions on his face, and I was moved to tears. I felt his pain and it also stirred up the pain I carry around with me daily. I contemplated how much time we had spent in the halls of this hospital this past year. Weekly visits to the our specialist, Dr. O, or the cardiologist for Rory, Dr. S. Spending the last 50 something days in the NICU. And these two good friends, Ted and John-John, have sat in this waiting room for us, have walked these halls with us, have prayed and cried with us in these rooms. Now, we sat here with Ted and it struck me that I am just done with this hospital.

Casey is getting stronger. Praises. Every doctor, nurse, ward clerk...everyone has been amazing. By nature of time, I talk to them more than I talk to anyone else in my life. Love love love this staff. But I'm so eager to be done with this leg in our journey. I want to never have to visit this hospital again. And as we sat with Ted, Scott told me later "We are also here for Ted's dad, but, we're really here for Ted." And you all, thank you for reading and praying for Casey, but you're really the support for Scott and me.

As the week closes, I have good...no, I have great news to report. Ted's dad sailed through surgery and is doing amazing. He's such a chipper, spright man. Well, we are talking about a man, who in his sixties, with his amazing wife, are building their own house additions and dug their own pool. Not kidding.

And here we have this adorable little girl who keeps chugging along continually getting stronger and healthier, even when I'm a personal mess. Casey has been like that from before birth. Our hour-long ultrasounds were always detailed analysis of the concerns and risks for the twins. Dr. O. would go over Gizmo's heart and Astro's small stature. And then, at the end, almost like an afterthought he would say "And Slugger is just hanging out up there at the top, just doing her own thing." She always kind of sailed in her strong, steady way seemingly unaffected by the craziness around her. She's so independant, I don't think she needs us really. Not like how we need her.

Casey
7 weeks 4 days
34 weeks gestation (8.5 months pregnant equivalent)
4 lb. (birth weight was 2 lb. 4 oz)
16.5" (birth length 14")
53 days spent in the hospital

Casey is still on her CPAP (a.k.a. dry land snorkel) but spends six hours a day on the nasal cannula. Both feed her additional oxygen to aid blood oxygenation and also supply air pressure to aid her lungs. During her stint on the nasal cannula, one of her meals will be done by bottle once a day. "nippling." Still can't get used to that term. The nurses are patiently trying to teach us how to feed Casey by bottle. I think they're going to hook up monitors to me instead of the baby because I think I have forget to breathe and will possibly pass out. I'm proud to say that yesterday, I did much better. So did Casey, I guess I should focus on her since this is her blog. Sorry. Maybe that will be Wednesday's blog.

Thursday night was Casey's first bath, a real bath. And it was the most documented bath I have ever seen (not that I witness baths often or anything). We were in between rounds of visitors when Casey's nurse, Gina, told me that she wanted to take off the second skin that covers Casey's forehead and nose for protection. Oh, cool. We were stoked to think we'd get a glimpse of Casey's face without that dark gum on half of her face. We were a little confused when we saw Gina wheeling a table with a bin of water over. It still didn't sink in until we saw a suddenly naked Casey being carried from her isolette to the bin.

Oh, she's getting a bath!!

Oh boy, suddenly 4 or 5 cameras/cell phone cameras were waving around as we got to be there for Casey's first real bath. We had good friends visiting, plus Auntie Kacie (maternity session post and newborn session post) just happened to be the ward clerk that day and was working late so she was there. And then our new friend, Mike, the RT (respiratory therapist) was also in the mix as he held Casey's oxygen mask. I think we created a new joke "How many people does it take to give Casey a bath?"

It was crazy to see our once fragile girl who dropped below 2 lb, who we weren't allowed to touch and could only whisper around, now basking in a warm, tepid bath having her hair washed and combed. She loved it, she was looking around to try to see where all the different voices were coming from. And she's a grunter, grunts anytime she's unhappy, but I heard her cry for the first time. The adhesive tape on her forehead was melded to her hair and pulled a little when removed.
[Nurse Gina checks Casey's nasal cannula. I love this outfit..thanks Auntie Chanelle]

[Casey getting her hair washed]

[The bathtime paparazzi]

[This is one of my favorite new pics]

[Scott officially a helper as he got to pour the water]

[Scott and mini-Scott-lyn]

[Here's a candidate for our 2010 Christmas Card Picture. Introducing the 'ohana, Scott, Casey, Keao...and umm, our friendly RT, Mike. All in the fam.]

So, as a 26 weeker at 36 weeks gestation in summary:

-no longer on caffeine or fluconisol

-receiving iron

-CPAP pressure 5 with 24-26% O for most of the day

-nasal cannula/vapotherm for 6 hours of the day with 3 L

-Attempting to bottle feed once a day

-36 mL of milk a day at 25 cal

-wearing clothes but still in heated isolette

7 Weeks

2010-09-15T22:17:00.000-07:00

Casey
7 weeks old
33 weeks 2 days old (8.25 months pregnant equivalence)
3 lb. 13.3 oz. (birth weight 2 lb. 4 oz)

Hey, Scott will be preaching this Sunday at our 10 am service at Hope Chapel Kaneohe Bay. He'll be preaching on "Choosing to Love" despite your circumstances. Pastor Carl is on vacation so Scottie is on the podium. Come support him at Hope Chapel 45-815 Pookela Street, Kaneohe, HI 10 am this Sunday.

Back to Casey: I have a vague memory of our orientation talk about the NICU. We were three hours into our hospital experience. I was trying not to move so I wouldn't dislodge the four monitors strapped to my belly and in a bit of shock as they were pumping medicine into me but the contractions were still getting stronger. Our anticipated tour of the NICU floor weeks before our C-section was now reduced to a 15 minute intensive explanation by Nurse Practitioner Pam by my bedside. She offered to take Scott downstairs to tour the NICU but he declined...a wise decision not to leave my side because I would be headed towards an emergency C-section in just a few hours. We were given a rough estimate of how long to expect our 26 weeker babies to stay in the NICU, about ten weeks. That would have put us at 36 weeks.

As we head towards the 34 week milestone next week, I realize that we're realistically going to be in the hospital for a few weeks longer than that 36 week goal. I talked with the doctor a few days ago and he said that the general rule is to expect babies to go home around or just a little before their due date. Especially since Casey isn't just a preemie, she's a micro-preemie. I never even heard of that term before. It means she was born before 28 weeks. Casey's due date, as a single baby, would have been November 2nd. She's also been steady on her CPAP, not showing as much improvement as we would like. He said there was nothing obvious on her chest X-ray. Preemies have scar tissue in their lungs and can also have moisture that makes it difficult for them to breathe. He didn't see anything obvious to explain Casey's reluctance to get off the CPAP. She's just young with lungs that still have a while to develop. We have no choice but to be patient.

Then Casey's nurse today, Amy, gave me an amazing update. They tried to nipple her today. I was a little confused, with all sorts of strange images fleeting through my head. Apparently, nippling means to feed by bottle. They are going to try to feed her by bottle once a day to see if she can figure out the eating from a bottle and breathing. Casey drank down a whopping 6 mL of milk before they had to stop. I nervously asked why they stopped and Amy said "oh, she wanted to stop. She gagged a little." WHAT? She was choking?" Amy insisted "oh, no...not choking. Gagging." Hmmm, I don't know if that sounds that much better. I appreciate that Amy tried to use softer words in her descriptions. But it is a foreign concept for these preemies. So she ate 6 mL (out of 34 mL) by mouth and they fed her the rest of her meal by her feeding tube.

A neat byproduct of this experiment is that they think bottle feeding is more difficult for her since she's on the CPAP. The CPAP is like a wind tunnel. If Casey has her mouth open, the wind rushes from the CPAP into her nose and out her mouth. I've put my hand near her mouth to feel it. It's seriously a wind tunnel. So, they want to see if she's have an easier time eating without a wind tunnel on her nose. So, today, they're going to have her on a nasal cannula four hours a day. Tomorrow, they'll attempt nippling a.k.a a meal by bottle, but this time with the nasal cannula. And we can call in to say when we're coming in so they can coordinate what time she'll be wearing the nasal cannula. It opens up things and we can see her sweet little face.

Today, was the first time she wore it and she was wearing it when I came in to hold her. Oh, she was looking around and I got a super awesome chance to just stare at her face while she slept. She still has the adhesive gummy tape over her forehead and bunched around her nose for when she puts her CPAP back on. But I got to just memorize every other feature. Oh, she even has little hairy cheeks. Hmm, they keep telling us that her little downy hair will disappear. Boy, oh boy, I hope so.

[Scott on his first try cradling Casey last night. The nurse Karen kept laughing because somehow when Scott tries to cradle babies, it just goes wrong. Casey somehow kept rotating until she was lying on her side.]

[Here I am today after her 3 pm care, cradling Casey. And there's her sweet little face. That blur in the background is her nurse, Amy. She works fast]

[This is Casey on a nasal cannulator. It still supplies a stream of oxygen to help her breathe]

[I don't know why this picture keeps rotating...but I have to show how Casey insists on sleeping with her mouth open all the time]

[Casey loves looking around...but she doesn't like to move her head. She just darts her eyes around trying to see everything.]

[Arlene had to close Casey's mouth so we could get at least one closed mouth picture]

Praise Reports:

-She's still gaining weight. We're praying for 4 lb by next week.

-Her oxygen requirements have usually been 24-26%

-These are the first times we've tried holding her by cradling her. It's real emotional and real sweet to be able to gaze down at her while she sleeps.

Prayer Requests:

-that this trial with the nasal cannula and bottle feeding has success. That Casey is able to learn how to drink from a bottle without compromising her breathing

-for Scott and his message this Sunday. This will be a real emotional one for him, it's going to be hard for me and I'm just listening.

-for peace and comfort. It's been rough, especially as tomorrow marks one month since Allison's death.

[Scott had a good laugh but I made a mistake in the video narration. The oxygen level was not 37%, but 26%. I was looking at the temperature or something else. ]

33 Weeks Gestation

2010-09-13T13:43:00.000-07:00

Casey
6 weeks 5 days old
33 Weeks Gestation
3 lb. 11.96 oz. (birth weight 2 lb. 4 oz.)
16" long (birth t14 " long)

Well, today, September 13 was the day we had really hoped would be our planned C-section day to deliver our triplet girls. I knew that pre-term labor was a huge risk but I was following two other blogs of multiples and they all went even past the average gestational term for triplets (32 weeks). The moms were these small, petite women who didn't even go on bedrest. I was so confident that it would be the same for me. I felt strong, I was having tons of braxton hicks but that is normal for triplet pregnancies.

Casey's neighbor was born a few weeks later gestationally than Casey's 26 weeks. Privacy laws are strict so we're supposed to stay by our baby and not be privy to any info about other babies. But I find myself glancing over at his corner and marveling at how well he is doing. He's off his oxygen support, he is bigger. The nurses keep telling us you can't compare babies...but I just think how different our lives would be if our baby girls had just come 2 or 3 or 4 weeks later. Heck, even 2 days later so I could have had steroid shots to help their lungs develop. A few weeks and we might still have Allison here with us. I hate that a month difference robbed us of so much.

The other part of me realizes that the fact that we even have Casey is amazing. How all the medical advances and research have made it even possible for someone born at 26 weeks gestation to survive. That had this been maybe fifteen years ago, we wouldn't have our little Japanese princess.

We live for the moments when Casey is awake. She's so alert. Her "touch" times are every three hours starting at midnight and around the clock. That's when her vitals are checked, her pamper changed, and her feeding time starts. Those are the times that she is often awakened, not too happily. She grunts her displeasure and flails her arms. Those are the times we try to aim to be by her bedside. As soon as her touch time is over, she's tucked in and she's back to sleep. Her sleep is essential for growth so we leave her alone, sometimes just sitting by her isolette playing on her phones or we'll kangaroo hold her while she sleeps.

[Here we are at Casey's 6 pm touch time. On the left is Nurse Arlene and Scottie on the right. Arlene uses a mask that blows oxygen over Casey's face so we can remove her CPAP gear completely and give her little wrapped face a break. Scottie rubs her head to get the blood flowing, especially since Casey wears the CPAP mask 24 hours a day strapped to her face. With the pressure off her face, Casey has an easier time opening her eyes and will look around for a good chunk of time. It's awesome.

She breathes really well off the CPAP but it's only for a short period of time. Most likely, if she's left to breathe completely on her own, her lungs will tire out and she'll start to experience oxygen saturation drops. She'll also be burning precious calories. Still, these brief bursts are perfect and give her lots of great practice at breathing by herself.

Praise Reports:
-She's been gaining weight steadily. We haven't had a 'loss" day in over a week.
-She had bloodwork and labs done this morning. Besides an elevated level of bilirubin (she may be getting jaundiced and need another stint of sunbathing under the lights), everything was normal.
-her O2 range tends to be in the mid-twenties and although her blood oxygen levels still drop, they manage to come back up on their own
-she's eating 34 mL of breastmilk every three hours

-last week's eye exam showed that her retinas are immature (expected since she's full-term) and her next eye exam won't be for another two weeks. Poor thing, they said she did cry but it was a short exam. Because of the dilating drops she was given, her poor eyes were a little puffy and red when we saw her later =(

Prayer Requests:
-that she continues to gain weight
-that her lungs develop and mature (we want to see less desaturation bouts and her CPAP pressure come down from 5)
-for our family as a whole. We have good days, bad days, and worse days. Emotionally, this year has been a long struggle.

6 Weeks Old

2010-09-09T11:48:00.000-07:00

Casey
6 weeks old (yesterday's info)
32 Weeks 2 Days Gestation (equivalent to 8 months pregnant)
3 lb. 6.67 oz. (birth weight was 2 lb. 4 oz.

Scott was right in his blog that 32 weeks is the magic number. Of course, that's the magical number we were shooting to hold our girls in check and not deliver before then. The average delivery for triplets is 32 weeks and it gives them an awesome rate of survival. Scott and I had a personal goal of holding the pregnancy until 33 weeks, which would be next week. We had countdown timers on our phone that ticked off the days. Life is just never how you plan it. We're a week away from our desired due date and we have just one little 6 week old girl fighting the odds. Crazy.

I'm just amazed at how the human body of a mom is designed to help babies grow. Casey is so much bigger and more alert, and stronger. But compared to other babies who are born at 32 weeks, she's significantly behind. Our "What to Expect When Expecting" says that most babies starting the 8th month of pregnancy tip the scales at 4 lb. Casey is not even 3 and half pounds and we're fighting for every oz. It differs baby to baby, but a lot of babies born at this stage won't need to stay very long on the CPAP (a.k.a. scuba mask). Casey still requires additional oxygen (ranging from 25% to 28% when room oxygen levels are 21%) and it blows a pressure of 5 to keep her airways open and thus much easier (less calorie burning) to breathe.

All this just instills such an awe in me. Casey has had to take on things like breathing, eating, digesting, regulating body temperature for 6 weeks now...6 weeks that were meant to be spent chilling in her little amniotic pool doing nothing but getting chubby. There's quite a bit of helplessness and guilt as I watch her in her isolette every day. Scott said that he's worried Casey will never learn to walk because we will never put her down when we bring her home. We feel like we have so much to make up for.

Vision:
Still, Casey is making milestones of her own, all on her own...no helpful placenta nearby (sorry, was that a gross reference). She went from opening a squinty eye or two for a few seconds to now opening her eyes and looking around. I now have a reference to "Casey is awake" or "Casey is asleep." Newborn babies can't see very far or in detail, so I get my face super close to her isolette. Look, Casey, it's blurry mama. She has her first eye check today. The doctor will check the blood vessels growing on her retina to make sure they're not growing in an abnormal pattern. The oxygen support she is receiving can affect the growing blood vessels negatively. It can cause the vessels to grow so tightly, the retina detaches and causes blindness. They'll monitor the vessels and use laser surgery to zap errant vessels. I'm more worried about the eye check itself. It's only five minutes but I've read that babies hate it, it's a terrible experience. Their pupils are dilated with drops and then their eyes are pinned open for the examination. Ah, please please pray it goes well so she won't need another eye check for another two weeks.

Lungs:
Also, every baby really has their own development journey, but we would really like to see improvement on Casey's breathing and oxygen requirements. I'd like to see her moving towards getting off the CPAP. Premature babies have underdeveloped lungs (I went into labor too fast for them to give me steroid shots that could have helped) and sometimes scar tissue. The doctor says that it is not technically considered a serious problem unless she reaches 36 weeks and still needs oxygen support. That leaves us with 4 weeks for Casey to get stronger at breathing on her own. also, we would just love the CPAP to come off. I am dreaming of the day, we can just hold her without having to worry about the gear pulling at her face or the seal around her nose loosening. And to kiss her face all over!!!

Check out the video at the end. All of Casey's nurses have their own special little habits or techniques when taking care of Casey. It's kind of neat to see each time we come in. This is an Intensive Care Unit, so they watch her around the clock and they get to know her little quirks. Nurse Arlene uses Casey's back up oxygen mask when we're there to change her CPAP mask so we can give her a head rub and it also gives us the best look at our baby. BTW, her forehead has an adhesive "second skin" covering on it to protect it from her head gear, that's the darker coloring.

Personality
I thought all babies were like this but I think Casey is one of the most active babies around. She's a squirmer. They try to swaddle her but she kicks and punches and manages to break free. Because she's 32 weeks, she started physical therapy which is to ascertain her flexibility and muscle tone. I wasn't there but her nurse told me that the PT people were a little scared off and only did a short session. Casey doesn't like her naps being disturbed and was putting up quite a display of punches and kicks. When she's on her stomach, she'll lift her head up an inch or two off the bed. It kind of freaks us out. Sleep, Casey, you need those calories.

Body Temperature
Casey has her temperature taken every three hours. She's on a heated bed but they're slowly turning it down and they've put clothes on her to see if she can hold her own. She is but they're not going to turn down the heat just yet. Even if she could do it all on her own, she'll be using up precious calories. But it's awesome because now we get to start dressing her up.

We are so blessed that Auntie Chanelle gave us Selah's preemie clothes, we also got some preemie clothes as gifts from Vinnie's sister, Michelle, and one of my best friends, Kelii. This first outfit is from Kelii who lives in North Carolina but had it delivered to us. Kelii, seriously, the nurses raved about this outfit just because it is so different from your typical baby clothes pattern. And they (plus me) love that Ooga Booga design, it's so cute. Nurse Leila says that it is Casey's sexy outfit because it shows off her belly. This outfit is also designed for NICU babies, it is easy to change the diaper, remove from the baby with all the wires and probes, and to check vitals without removing it. Plus, it's just cute.

Say hi to the world, Casey!!!

Casey's favorite sleeping position is on her tummy. Enjoy it now because when she comes home, it will be only on her back. I don't have those alarms to let me know she's okay.

Oh, I guess she's not really sleeping after all. Hi Casey!!

Prayer requests:

-a great retina check today, that the doctors don't see any problems and that she doesn't need another check for two weeks.

-for comfort for Casey who won't understand what's happening during her eye check and for any discomfort

-for wisdom and comfort for Casey's nurses and doctors . seeing other parents and their worried faces in the NICU (my face must look like that all the time), I don't know how these nurses deal with all the complications these babies struggle through. I just worry about my baby, they have to worry about all the babies.

Praise Reports:

-Casey loves to eat, her feeds are going great

-She doesn't have reflux or vomiting, I've read other preemies struggle with that.

-She's awake more and more interactive, it's such a bonding thing for me and Scott

Daddy talks clothes and milestones

2010-09-08T21:38:00.000-07:00

Lucky people, today you'll get two posts. I'll hold off my own Wednesday update to give people a chance to read Scottie's blog about getting to play dress-up.

Click here to read and see pictures from this week.

Yah, 32 Weeks!!!

For I know the plans I have for you

2010-09-05T23:00:00.000-07:00

Casey
5 Weeks 4 Days Old= 39 Days Old
31 Week 6 Day Gestation
3 lb. 5.61 oz.

Thank you for all your prayers. Right off the bat, we are not sick and Casey never became sick. Wednesday I was so sick, I was convinced I had the flu. I woke up Thursday feeling completely normal, even went to the doctor to get checked out and she found nothing wrong. She thinks I might have had mastitis but it cleared up on its own. Scott and I still stayed away from the hospital just to make sure. Scott had a tingling in his throat. When I asked him Thursday night if his throat was still sore, he said "that's not an easy question...it's sore but I was screaming at the football game." Ugh, so we had to wait another day, until Friday before we tentatively ventured back to the hospital after two days of symptom-free existence. Boy, I missed Casey so much. Two whole days of not seeing her, it was tough.

Fortunately, we have sweet nurses who kept her healthy and happy and gave us spirited updates over the phone whenever we called. In fact, Arlene informed us that Casey had been entertaining them by opening her eyes and smiling...and that she has a dimple in her left cheek!!! We couldn't wait to see it!!! It was hard but our nurses made it easier by giving us detailed updates. We know our Casey is in such good hands. We find little gifts in Casey's isolette demonstrating how loved our little girl is.

I mentioned in my last post, but this monkey is a gift from Ava. It has been disinfected and is Casey's roommate in her little isolette. We came in one morning to find it sporting a preemie pamper (Casey used to wear that size pamper) and a CPap head gear (not seen in this photo). We found that another of Casey's nurse, Gina, had painstakingly worked to get the CPAP mask and pamper on, even cutting out a hole in the rear for the monkey's tail.

One Casey's one month, we came in to find that Arlene had created this adorable little announcement and put it on the side of Casey's isolette. Look at the cute bow on top of the baseball cap. I'm a little worried that Arlene has set the bar too high. When Casey comes home, how am I going to keep this going. I can't scrapbook AT ALL. I may have to use my photoshop skills to just change the dates on this one =)

Most of my family hasn't been able to see Casey yet. Half of them are on the Big Island. When friends of my dad found out what had happened with Rory and Allison, they gave my dad airline fare so he could fly up here from the Big Island. He was here for the weekend and just left today. He came with us to the hospital and sat with us and we kangarood. But, even more awesome, he was there for some of her 3 hour "cares." That's when she tends to wake up and we got to see her looking around the first day. Yesterday, Nurse Gina got us really involved in the "cares" and my dad was there as we changed her diaper, cleaned her mouth, took her temperature, and helped position her. We stopped by the hospital today and my dad rubbed her head when they took off her CPAP head gear to change her nose mask. She loves it. Liken it to getting a foot rub just after you take off your shoes after being on your feet all day. She loved it so much, she made our week with a smile and a DIMPLE!!!!

[Kangaroo time with mommy, she was squirmy for the first half. By the time she had fallen into a deep sleep, it was time to put her back. Which woke her up and we were treated to her loud grunts and complaints] [This is Nurse Leila. We told her that it was Papa Jim's last time with Casey before heading back to the Big Island and she had us help her with all of Casey's cares. We know it slows things down and probably puts the nurses back in their busy schedules, but it's the biggest gift and we love doing it. The nurses coach us through how to handle Casey, what signs to look for that she needs to be left alone, what she likes and doesn't like. Here, the CPAP gear nose attachment is being changed. There's prongs that insert into her nostrils and there's a suction cup that goes over her nose. They change back and forth between the two every six hours so as to change the pressure on her nose and keep it from creating sores. It's also a great time to be visiting because the head gear comes off for a minute or two and we can see Casey's face!!! Here daddy watches while Papa Jim rubs Casey's head to get the blood circulating *only under the supervision of Leila]

[Leila carefully holds the CPAP over Casey's nose so she still gets enough oxygen during her little massage break] Get ready for the cutest picture ever!!!! There's the dimple!!!

Allison and Rory

I'm learning that tears are still coming and they surprise me when they come. Of course, it was made tougher by our self-created quarantine from Casey. And messages from the mortuary concerning Allison's arrangements. The surprise comes in the time of day. I'll just be running an errand and a random thought flitters across my mind and I'm crying as a painful fist grips my heart. Then the fist lets go after just a moment and the tears stop, I'm left feeling caught off-guard.

I was running to Subway on Friday night and I passed Castle High School which is near our house. There was a lot of traffic and I could see the bright lights of Castle and hear the loud cheers of the crowd. I looked at the teens crossing the streets in droves and I cried, I mourned the loss of my girls as teenagers. When my friend, Leena, had first heard about Rory's heart defect, she ordered books on grief through Amazon and had them delivered to my door. I carried one book in particular around. One of the things it said was that no matter how early you lose a child, whether shortly after birth or even before birth, the loss is much more than just what you have. You not only have to mourn the loss of your child, you have to mourn the loss of the future you had plans for, hopes for, dreams for.

Since we found out we were having three little girls, our heads have been rapidly churning out plans for the future of our family. How to fit three cribs in the nursery. How to bathe three squirly babies. How to take three 10-month olds on a trip to the Big Island when my sister gets married. As I was listening to the roars from the Castle football game, I heard these familiar words in my head:

"for I know the plans I have for you

I had such wonderful plans for my girls. Yes, I kind of hoped they would all attend Kamehameha Schools like me, I wouldn't have minded HBA graduates like daddy. But I would have been happy to have them nearby at Castle, anything as long as they were happy. In 15 years, all of my three girls could have been at that Friday night game. Casey could be on the field, the talented placekicker. And in my dream, Rory and Allison are there too. Maybe Rory was in the band, playing drums. Yah, that would have rocked. Feisty Allison, a cheerleader, jumping up and down with excitement. Above all, they're surrounded by friends, laughing and being young. I not only have to grieve the loss of my two baby girls, but I will also have to grieve the loss of those two girls as teens...as young women...as mothers themselves.

The words in my head come from a scripture, Jeremiah 29:11 says "For I know the plans I have for you," says the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

I'm kind of stumbling at times through this walk, totally not understanding everything. But then some things just strike me and I have to stop and just nod "I see that." God has such huge plans for us. He created us, we are his kids, his prize. He wants us to prosper. He wants to give stregnth to the weak, hope to the hopeless. He wants to give us a future. He has given us a purpose and he's excited to see how we will grow up. And yet, some of us just walk away from his plans, some of us walk away from him. I walked through Subway's parking lot and mourned the loss of ones I loved, I grieved the loss of the future I had envisioned for them...and I know God knows how I feel.

Prayer Requests:

-Casey to gain weight consistently

-Casey to get better at keeping her supplementary oxygen at 21% (she hovers between 22 to mid-twenties normally) and to keep her saturation levels up (she drops down to the 60's quickly when she should be above 83)

Praise Reports:

-Scott and I aren't sick. I do NOT have the flu!! Casey did not catch any germs!!!

-Casey has been eating well and started gaining weight!!!

- a great weekend with my friend Nalani last weekend and a great weekend with my dad this weekend

Casey Turns 5 Weeks Old

2010-09-01T15:25:00.000-07:00

September 1, 2010

Casey
5 Weeks Old
31 Weeks 2 Days Gestation (7.75 mo. pregnant equivalent)
3 lb. 0.67 oz (original birth weight 2 lb 4 oz)

The biggest milestone of course is that Casey hit 3 lb. She's taken full feedings, they have this formula to calculate based on their body weight how much they should be eating every 3 hours. We had a worrisome last week because she wasn't gaining weight last week. They added more breast milk and fortified the milk to add more calories but she was still not gaining weight. Probably because she has become a lot more active. She' s a squirmer and she's so strong. She manages to lift her head up when she's on her tummy. We love seeing her activity but we want her to sleep and just concentrate on growing. So much is dependant on her gaining body fat. She won't be able to regulate her body temperature until she has more body fat, thus she's confined to her plastic isolette. I'm a little worried, they called me today and said they had a meeting about her slow weight gain and are going to play around with her feedings.

The other super awesome development is that she's begun to open her eyes more. The nurses have always said that she opens one eye occasionally but we almost never see it. One, she's so young and small and two, her mask put a lot of pressure on her face and caused her eyes to get puffy. She's grown into a bigger apnea mask and the swelling in her face has gone down a lot. Last week, I was treated to her opening BOTH eyes and looking around for several minutes. I was so excited, I couldn't wait for Scott to see it, but she didn't treat us to it for another few days. Since then, she's been consistently opening an eye or both eyes when we wake her up to kangaroo her.

Praise Reports:
-her Friday head ultrasound came back with a normal reading
-she has passed the 3 lb mark
-her breathing has been a little more stable...she likes oxygen levels in the mid-20's but does have to get bumped up to the thirties when her sleep is disturbed
-she's much more tolerant of being touched
-opening her eyes and looking around

Prayer Requests:
-Protection from sickness!!!
Yesterday, I visited my toddler nieces and one of them is getting over being sick. I tried to avoid her but how can you reject a cute 2-year old, albeit with abundant nose snot, who climbs into your lap and requests "hug!!!" This from the girl who doesn't have much words in her vocabulary.
I'm sick with worry too because last night we visited Casey and I kissed her soft little sweet cheek over and over again. while Scott held her. This morning I woke up extremely fatigued and with body aches. Which means I'm not going anywhere near the hospital but I'm also worried I might have already brought some germs in. Lord, please kill any germs and keep my baby girl happy and healthy.
-Gain Weight!!!
We want to aim for .7 oz gain a day.
-Complete recovery for my health
I want to wake up tomorrow and this all just have been a fluke, I was just tired from lack of sleep. This will be the first day I don't get to see Casey. One thing I was so thankful for, was that of Allison's 19 days, we were there every day.

The bug-eyed stuffed monkey is a gift from one of Casey's night nurses, Ava. Another nurse, Arlene recommended we take pictures of Casey with the stuffed monkey to show how she grows over the weeks.

We're hoping the downy layer of fur dissipates as she gets older. Fingers crossed.

Here's Daddy kangarooing with Casey. She loves it. She usually only needs very little oxygen support.

Peekaboo, Casey!!!

Kangaroo time is over. Casey definitely does not like being woken up from her slumber. Hmmm, just like Daddy.

She reminds me of that cartoon, the Snorkels.

Good night, little girl!!!

I apologize for not giving an update this past weekend. Much of our sadness over losing Rory and Allison is abated by the comfort of having Casey in our lives. Our sadness is tempered with joy. But, it also means that things that should bring me joy are tinged with sadness. Casey turned 1 month old this past Saturday. It's hard to reflect upon her birth without the sorrow of remembering that we lost Rory that day. And that delivery, which usually brings people so much joy was one filled with fear for us. That because it happened so early, we eventually lost our oldest daughter. Saturday was a rough day for me. I can't watch those million episodes of "Baby Story" or "Maternity Ward" on every channel. I had to turn off Grey's Anatomy because the storyline involved a premature baby.

I want to celebrate Casey with everything we have. She's an amazing gift. But for now, these milestones have a trace of painful memories. I know it will get easier and I want it to, but without having to sacrifice my memories of all my girls.

4 Weeks and a Birthday!!!

2010-08-25T13:11:00.000-07:00

It was four weeks ago exactly that Scott and I celebrated our 3rd year anniversary and welcomed our three little girls. Since then, we've had to say good-bye to our two oldest girls, the identical twins. And 4 weeks later, we celebrate Casey hitting 4 weeks exactly on Scott's 34th Birthday!!!

Happy Birthday, Scott!!!

This past weekend, as Scott and I were scrubbing in to enter the NICU (neonatal intensive care unit) for the second time that day...I turned to him and said "Scott, I don't have anything planned for your birthday." He just smiled. I continued "I mean it. I'm real sorry but it's been so crazy. I really don't have a single thing planned...this isn't some complex plan to dupe you and throw you off-track. There's no surprise party or anything." He laughed at that. In all seriousness, I had always thought that I would be confined to bed being 7 and 1/2 months pregnant with triplets. I was hoping his friends would take him out for fun on the town, his last big hoorah before our lives got crazy. Well, the craziness started way early.

So, I have a lot to make up for. Christmas will be a big one this year=)

Casey just seems bigger and bigger. Although she lost a bit of weight the past two days. Today she weighs 2 lb 12 oz after getting up to 2 lb 14 oz. Oh, wrong way, Casey. Everything else is looking really good. They may have to figure out a way to pump up her caloric intake. Right now, she is intaking 24 mL of breastmilk every 3 hrs and her tummy looks like it's to full capacity. This past week, we have seen her sneeze, yawn, and hiccup. The poor thing seems to hiccup every time we kangaroo her. The poor lil thing squeaks when she hiccups. And those methods for getting rid of hiccups...they so don't work for a preemie. No drinking water upside down or scaring her.

This video clip is courtesy of Crissy who captured it perfectly.

She still has desaturation bouts, where the oxygen levels in her blood dip...but she seems to be maturing and tolerating a lot more. She used to desat when there was noise or talking or touching, now she tolerates it. So, we've been rubbing her soft hair or holding her hand when we can...its probably mostly for us...but we love being able to bond with her more. Last night, they took off her head gear while adjusting her mask and I massaged her head to get the blood circulating...and she opened both eyes and was looking around. She has Scott's eyes. Perfect eyes. The little tube that goes into her mouth runs into her stomach and that's how she is fed and it also helps air trapped in her stomach escape. She seems to think its a pacifier and she loves sucking on it...or pushing it around with her tongue. She enjoys it so much, I swear she actually smiles sometimes. Check out this video and see what I mean...warning, it's a little dark.

Prayer Requests:

-Casey gets a head ultrasound on Friday as she turns 30 days old. pray for no bleeds or abnormal results

-That she gains weight, we would LOVE for her to hit 3 lb by next week Monday

-That her lungs develop and strengthen so she breathes on room oxygen 21% more and with less help