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

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

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

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=) "
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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

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!!!

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

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

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.