Tuesday, November 30, 2010

Slugger 4 months real/1 month adjusted

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

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

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

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

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

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

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

Here's Scott all suited up.
They used X-ray to make a video of Slugger's mouth and throat as she drank from the bottle. Then they went over the video with us afterward. Even though she looks like she's perfectly fine, you can see from the video that she's aspirating as she swallows. As she swallows liquids, a little bit is going down her airpipe each time she swallows. It explained why sometimes she sounds congested or coughs when she's eating. It settles into her lungs. Our lungs can handle a little bit of fluid but it does put her at risk for developing pneumonia. So, she has to stay on thickened feeds and have another swallow test in a month. Thankfully, the peds visit checked her lungs and says they sound clear.
We had a second baby shower for Slugger. Our wonderful friend, Lori, organized it and threw it for us. Scott watched Slugger and I headed over to Joyful Gardens restaurant to spend time with beautiful women. Slugger got some great gifts and even gift cards to pick out what she wants But, seriously, the best part was being able to hang out with good friends. I sat at a table with my family and Scott's mom. I haven't hung out with my sister in so long.
[My auntie Linda, my Mom, Scott's grandma, and Scott's mom]
[My niece Lauren and my sis, Cassan]
My niece Lauren and I are very close. Or we used to be very close. She used to stay at our house a lot until I got too pregnant to run after her. I've really missed her. Unfortunately, I'm no longer her favorite. My sister says Lauren now tells everyone that she loves Casey. Casey who she really hasn't ever seen except for videos on my phone. But one morning, Lauren packed a bag and told my sister that they had to come pick up Casey so Casey could sleep over their house. Oh, I can't wait for Slugger to get bigger so she can play with all her cousins.
We did take Casey out for things beside doctor's appointments. It's not for Casey, it's for me. It's rough to quarantine yourself from the world. I love TV and I'm pretty bored with it. Scott's family had to work for Thanksgiving and my family has too many sick toddlers to risk taking Casey around. Scott's job involves a lot of people who don't have families and thus, he usually has gatherings on Thanksgiving Day to give everyone a place to go. So, Scott was going to be at a church Flag Football Game all morning and then at an Ignite Thanksgiving Lunch. I couldn't bear the thought of spending most of the day by myself so I packed up Slugger and took her to the park for the Flag Football Game. We wrapped her stroller with this handy blanket from Aunt Gina to protect her from wind, sun, and yes, people. It was an awesome day. Plus, everyone at the game knows how fragile Slugger is so everyone looked at Slugger but from a distance. I appreciated being able to socialize and not worry. Slugger has so many protective aunts and uncles.
[Casey in her stroller tent]
Lastly, here are some pics of Slugger one morning.
Slugger had two shots at her doctor visits yesterday, plus they drew blood from her heel. Poor thing. And what am I doing during her shots? Running to get my phone so I can video it? Warning: She makes crying look cute.

Wednesday, November 17, 2010

Casey's First Month Home

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

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



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

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

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

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

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

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

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

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

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

Casey at her pediatrician appointment.

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

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

Therapist: Does Casey like to look at faces?

Me: Oh, yah.

some silence

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

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

Casey at 0-1 month adjusted:

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

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

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

Her and Grandpa Pat.

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

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

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

Tuesday, November 16, 2010

3 months without Astro

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

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

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

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

You're supposed to wear your bracelet until your child is discharged. Since they're not meant to last for 3 months of wearing, the staff told us that we could take them off but we needed to keep them someplace safe in order to take Casey home. I refused to take mine off. The two times we cut off bracelets were for such devastating reasons, I made Scott keep his on until we could finally take them off for a good reason. People laughed at our grotesque bracelets. Scrubbing from elbows to fingertips for 2 mins to enter the NICU x going to the NICU 1 -2 times a day x 81 days= super washed out bracelets that squished when you pinched them.
You were supposed to take the bracelet off when you took your child home, not when you lost your child. And we had to cut two bracelets off for the wrong reason. I was determined to enjoy the day that we took our last bracelet off for the right reason.
So we wore them with pride. Well, I did. I don't think the symbolism was as big to Scott, he's just a great husband who goes along with my crazy notions. Then, we got so overwhelmed taking Casey home that we never actually got around to taking the Casey bracelets off. And when we did remember, I would keep postponing it. I wanted to make a big deal of it, take pictures. Finally a day came when we remembered to have the camera nearby, and we cut our Casey bracelets off. For the right reason.

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

Tuesday, November 9, 2010

Rewind-Casey's Graduation from the NICU

Saturday October 16th

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

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

Sunday "The Big Day" October 17

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

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

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

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

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


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


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


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

Video clip of Casey at a month old.




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



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