9 Weeks Old

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

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

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

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

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

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

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

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

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

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