Abby Update: 6 Months Old

Posted on March 20, 2014 by justeeni

Weight: 11 pounds, 14 ounces

Yesterday Abby had her 6 month check up and she’s doing great. Her iron, which has been very low ever since she was born, and especially since the UofM incident, is finally up above the normal threshold. Her weight is increasing at a happy rate and she’s closing in on first percentile (which, for us, is a big deal). Her left foot, which has been turned in since before she was born, most likely due to her breech position is improving, but still turned in enough for us to be doing some work on it at home. She may or may not need to see orthopedics in a few months.

This month Abby started out waking up during some nights, but now is consistently sleeping about 7-9 hours a night. Even during our trip up north, she kept sleeping through. On the other hand, we haven’t been able to get her on any sort of predictable eating/sleeping routine or schedule. Until a couple of days ago, that is, when she suddenly started eating and napping about every three hours with one extra snack in the morning. We’ll see how long this lasts.

Abby rolled over this month, from her tummy to her back. She smiles a lot, and loves to be talked to (probably due to a lack of attention which is definitely due to a needy older sister who shall remain nameless). She started laughing recently which is so much fun.

One of Abby’s favorite things is what we call the baby blimp. Even when she’ll in an all-out crying fit, we can usually get a smile out of her using this little technique. Lydia calls it the baby balloon.

This month Abby starred in our Church’s talent show: Fur Rondezvous, in “The Story of Abigail“.

Abby still loves to bounce. She loves her bouncy seat and is in the process of learning to fall asleep without Mom or Dad bouncing her into sleep. She’s getting close to being able to hold onto things, which will be especially fun as Lydia always wants to give her toys to hold. She’s looking more like her older sister. Every day we love her more and couldn’t imagine life without our Abigail.

Here it is!

Posted on February 25, 2014 by justeeni

Abby Update: 5 Months Old

Posted on February 10, 2014 by justeeni

Weight: 10 pounds, 2 ounces

Eat, sleep, and smile have been Abby’s main activities this month. She often sleeps eight hours at night, but she makes up for that by eating every one and a half to two hours during the day. One night in January Abby suddenly stopped having her evening fussy time (from 7ish to 10 every night) and she hasn’t gone back. She also outgrew her newborn hold-me-all-the-time desires and sometimes she’ll even squirm and cry until you put her down.

Abby spends a lot of time in her bouncy seat. She hates being on her tummy. Recently, while laying in her jungle, she learned that she can make the hanging toys rattle by swinging her arms at them, so that’s been an exciting development for her. She also loves bath time. Her whale-of-a-tale bathtub came with a goldfish “strainer” toy that we use to drizzle water on her and that always gets her to smile. Lately Abby has been trying to fit her whole fist into her mouth. She hasn’t been able to succeed, so she usually gets pretty frustrated.

More than anything, Abby loves to bounce. When she’s tired and won’t fall asleep, she needs to be bounced lightly. Whether it’s in her bouncy seat, or in Mommy or Daddy’s arms, Abby just loves bouncing. We’ve dubbed this BBS for bouncing baby syndrome, because it always gets her to fall into a contented sleep.

Abby’s nicknames continue to be numerous, but the most commonly used ones are: Abby, Abs, and Abster. We don’t really think about it when we use them, but then it’s adorable to hear Lydia tell Abby goodnight, “I love you Abs!”.

NICU Survival Guide

Posted on January 13, 2014 by justeeni

Now that we’ve had two babies spend time in the NICU (124 days between the two of them), I wanted to take some time to write a little guide for ourselves and anyone else who may find themselves spending any extended amount of time with a baby in the NICU.

Preparations

If you have a clue ahead of time that baby might come early, my best advice is to plan ahead as much as possible. Cook and freeze meals, the more, the better. Make sure you have everything prepared for when Baby comes home. Errands are no fun once Baby is born. Figure out a workable routine, find out if you (or your spouse ) can work from home, and set up any extra help or baby sitters.

When Baby Comes

When Baby is born, the first thing to do is take a deep breath and process a little. A new baby changes everything, but a new baby in the NICU really changes everything. Once you’ve had a chance to take a deep breath (and decide on a name!), it’s time to make some phone calls. Announcing the birth of you child is exciting and when Baby comes early it’s even more of a surprise to those on the other end of the line. When I called my mom to tell her that Lydia was born (nine weeks early), she answered the phone by saying, “What do you know about puppies?”. My sister’s new puppy had just hurt her foot and my mom was trying to decide if she needed to take her to the vet. It was pretty comical (later).

If your baby is healthy and doing well, considering the circumstances (just trust what the doctors tell you) make sure you start off every announcement with that information. And halfway through, you should say it again. And then, before you hang up or say goodbye, say it again. Most people don’t know much about premature babies. I certainly didn’t. And they don’t know how critical of a condition your baby is actually in.

Believe the Doctors

The first question everyone has about a preemie is, “How long will we have to stay in the NICU?”. Doctors don’t like to give out false hope or unrealistic expectations, and their estimates are usually pretty good. For Lydia, they guessed 6-8 weeks, and she came home in 6. For Abby, they guessed 8-12 weeks, and she came home in 11 1/2.

However, both our girls started out fantastically. Every day we came in to hear praise about how well they were doing. We let it get to our heads and figured, surely, they would be home sooner than the original estimate. But the NICU is a roller coaster with unexpected turns, and both times the doctors were ultimately right. When I asked Dan what his best NICU advice was, it was to listen to the doctors estimate and don’t doubt it even if your baby seems to be doing amazing.

The First Week

The first week always feels like a whirlwind to us. First Baby comes, then there are announcements and visitors. You get to watch everyone’s reaction to your news and share your story. But after a couple of days, and you head home from the hospital, you have to get a plan together for how you’re going to handle your NICU stay. When Abby was born, both my parents and Dan’s parents came down at different times to watch Lydia and help around the house while I recovered. We would have completely fallen apart without that help.

During that week I sat down on Excel and figured out a tentative schedule that allowed us to visit Abby twice a day. We had to see if Dan could get in eight hours of work each day. It turns out he could, but only by working six days a week, getting up early, and going to bed late. If you do this, don’t forget to account for drive time. It was not uncommon for either Dan or I to spend over two hours in the car every day between driving to work, the hospital, home, and Lydia’s Babysitter’s.

Also during the first week, my parents took me grocery shopping. We stocked up on food for the next four weeks. I also got to ride around Meijer in one of their little electric scooters.

It’s OK to Cry

When I have babies in the NICU, I cry. I cry when they are admitted. I cry when they are not doing well. And I cry, even when they are. It’s sad. It’s hard. Your baby is supposed to be at home or in your belly. Not in an isolette. So it’s ok to cry.

I talked to a NICU mom once who had been in the NICU for two months already. They had a long road ahead and I empathized with her. She smiled and light-heartedly told me it was “sort of fun” to have a baby in the NICU. I hid my shock, but in my mid-NICU-super-emotional state, I felt like she had no heart.

I saw another Mom standing at her baby’s isolette, just watching her baby sleep. She was crying. I always liked that Mom after that, because it was so obvious how much she loved her baby boy.

Now, I’m all for having a good attitude and looking on the bright side. But you don’t have to pretend everything is perfect. It’s ok to cry.

Feeding Your Baby

Feeding times are the times you really want to be in the NICU. This is when you get to change your baby’s diaper, take your baby’s temperature, and, once your baby is stable enough, hold him or her. Once babies are over a week old, they usually have their feeding time every three hours.

Mothers of preemies aren’t able to nurse their babies so they have to express milk with a pump to be fed to their baby through a feeding tube. Lactations consultants recommend pumping every three hours, around the clock. I found that it works best to pump one hour after Baby’s feeding time, so that you can be involved with the hands-on part and not skip a pumping time. I also found that, once the milk supply is established and if it’s plentiful enough, it worked well to pump an hour early before bed and and hour late afterward so that you could have a couple of four hour stretches during the night.

Dan and I like to be at the hospital at least twice a day. This way we could each get a turn holding the Baby, and we could often be there for rounds. We got a morning update on how the night went and an evening update on how the day went.

What about Meals?

I’m sure a lot of NICU parents just eat out for every meal during their NICU stay. Dan and I avoided this for two reasons. One: it’s more expensive. Two: It’s much less healthy. And during the chaos of a NICU stay, eating junk won’t make things any better but it can make things a lot worse.

To handle this issue I made a meal plan of fast, easy-to-put-together meals for one week. We ate things like spaghetti, rice and beans, curry with frozen veggies and a store-bought sauce, veggies and hummus, and chili (which was the most time consuming meal and I wouldn’t choose that one again). And we repeated it every week until Abby came home. We would go grocery shopping once a month or so to buy the non-perishables. For the fresh produce, we asked a family from church to buy our groceries once a week and deliver them to us at church. They graciously continued to do this for the entire time Abby was in the NICU.

We also had one night a week when we ate Qdoba using gift cards given to us by loving friends from church. Those nights were my favorite. No preparation and no clean up.

Babysitters

With Abby we had another challenge of taking a care of a toddler while visiting the NICU. It worked best for us to bring Lydia once a day and leave her with a sitter during our second visit. Our favorite way to do this was to take her in the morning. In the evening we would eat dinner together and tuck her into bed. Then the baby sitters would come and stay while Lydia slept and we went to the hospital. We had such loving sitters who also tidied our messy living room, cleaned our dishes, and did our laundry. Those nights were also my favorites.

We found that it was very important to spend one-on-one time with Lydia. Snuggling, reading, tickling, talking, and playing were very important because she was getting much less Mommy and Daddy time than before. Sometimes she would scream from her bed at night, but we realized it wasn’t because she was being “bad”, it was because she was having trouble coping with our being away so much. So on those nights I would snuggle her extra until she was ready to sleep.

Get to Know Parents and Nurses

One of the most therapeutic things Dan and I chose to do was to make friends in the NICU. Time in the NICU passes slowly, but having another baby to cheer on helps a lot. Talking to other parents is encouraging, distracting, and helps pass the days. We had a lot of fun celebrating when our friends would move to an open crib or take their first bottle.

It also helps to make friends with the nurses. They are the people you’ll see the most and they are the ones caring for your (very) little bundle. It’s a lot better to have friends watch your baby than strangers. We also discovered that nurses which we didn’t care for at first, grew on us as we got to know them.

Once we transferred to Mott’s, we had trouble getting to know our nurses. It was just a less-friendly atmosphere. So we made an extra effort and brought them chocolate. That helped a lot. We also befriended Russell, the parking lot attendant.

Take Naps

The house is trashed. The sink is full of dishes. The laundry isn’t folded. Take a nap.

Someone just called your phone. A delivery man knocked on the door. You didn’t get to shower today. Take a nap anyway.

Some things just have to wait. Sleep isn’t one of them. Life in the NICU is hard enough without being exhausted. And, even with naps you’re still not going to get enough sleep, so take them!

Turn to Jesus

Even if you follow all of my NICU advice and think of fifteen other helpful things, having a baby in the NICU is still rough. Our greatest source of strength and hope rested in Jesus Christ. God is, after all, the Great Physician, and even if doctors fail, He never will. He knit together that Baby in Mom’s womb, and He can keep knitting that Baby together out of it.

Many times, I felt like everything was falling apart, and I didn’t even know what to pray. But I remember riding in the car, looking up at the night sky and silently crying out, “Help me! Help us! We need Your help!” Sometimes the change wasn’t instant, but He always came. He always helped.

Times when I felt so down I knew no one could offer me any comfort and He would. Through a song in the car, through a sermon at church, or through some unexpected blessing, He would carry us along.

The Roller Coaster Must End Sometime

There were times when I seriously thought Abby would never come home from the hospital. I thought she would just stay there forever, not finishing her bottles, not gaining weight, not keeping her temperature up. It’s silly, I know. But that’s how it felt.

Life in the NICU is a roller coaster ride. There are unexpected turns, and many ups and downs. But, the roller coaster will end. There will be a time when you will stop taking those car rides to the hospital every day. There will be a day when you have time to wash your own dishes and do your own grocery shopping. It’s true, what they say, that there are no kindergarteners in the NICU.

I hope this post will be useful for some. Or perhaps it can give others a glimpse into NICU life. And if not, thanks for bearing with me. If Dan and I have another baby I know that we will, at least, find this to be a great help.

A Letter from Abby

Posted on December 11, 2013 by justeeni

Dear Everybody,

I heard my Mommy and Daddy talking about a blog where Mommy writes things about our life and people read them. I had something to say, so I thought that maybe this would be the best way to do it.

My name is Abigail. Since Mommy writes about our family, maybe you’ve heard of me before. I was born a long time ago, but I just got to come home last week. I love being home! Mom and Dad snuggle me almost all the time. Even Lydia holds me. And I love it when they sing to me. I get to lay in my toy jungle, take baths in my whale bathtub from Nana, and I even get to lay on the floor and stare at the lights on the tree that grew in our living room just in time for Christmas. Except for the snuggling, that’s my favorite.

Well, I wanted to write a little bit on here to say thank you to some people. You see, Mommy and Daddy must always be late for things, because they weren’t ready for me when I was born. While I was all snug and warm in my isolette, Mommy and Daddy were running around like crazy trying to do a zillion things. And they told Mommy not to run around like crazy trying to do things because on top of having me she just had surgery too! Well anyway, Grandma and Grandpa and Nana and Papa all came down and helped watch Lydia and take care of Mommy so she wouldn’t cry as much and so she and Daddy could come see me.

Then my family finally got into a routine, but sometimes Lydia wasn’t very good at the hospital. She liked to push buttons and pull out cords and things. I can’t really blame her. Oh, and she was loud too. And me and the other tiny babies don’t like loud noises. So some nice people from church offered to play with Lydia so Mommy and Daddy could come and play with me. I liked that a lot.

I don’t know what stress is yet, but Mommy and Daddy said they had a lot of it. One night Mommy had so much that she didn’t want to go home and clean everything. I guess she makes a lot of messes or something. But later I found out that the nice lady who was watching Lydia sleep had cleaned up all of Mommy’s messes! Mommy was so happy she almost started crying again (which I don’t understand at all). She said there were two nice ladies who would clean up her messes every time they watched Lydia sleep. Cleaning must be really not fun because Mommy sure liked not doing it.

Sometimes I heard Mommy and Daddy say they were really hungry but they didn’t have time to eat. They must love me a lot because I can’t imagine anything more important than eating. Well some other nice people gave Mommy and Daddy food. It was all cooked and everything. And some other people gave them little plastic cards that turned into food when they took them into a special building called a Qdoba. Well I don’t understand all that, but I know how important it is to eat so I sure am glad other people fed my parents so they could come and feed me.

Most of the things I’m thankful for I only heard about, but there’s one thing I did get to see. A few different times people came to see me! They talked about me and sat with me and even prayed for me. I sure liked that a lot. Mommy and Daddy said lots of people were praying for me. I must be pretty special to have so many friends already.

Well, I don’t know how long these letters are supposed to be but there was just one more person I wanted to thank.

You see, Mommy and Daddy sacrificed a whole lot to come see me every day. But even with all their sacrifices, they were still gone a lot. I wasn’t afraid when they left though. Do you know why? They told me that even when they left me I wasn’t going to be alone because someone named Jesus was staying with me all the time. He sent His angels to watch Lydia when Mommy and Daddy couldn’t be with her and He and His angels took care of me too! Sometimes those really smart doctors made mistakes but Jesus would tell Mommy and Daddy what to do so I was never in trouble. Jesus stayed with me every night. He even came with me when I had to have surgery, and he helped those doctors do a really good job.

Now that I’m home, a lot of those really great people I mentioned aren’t around any more. Nobody comes to watch Lydia and no one cleans up Mommy’s messes anymore. But when I came home, Jesus stayed with me even then. I don’t know if anyone else out there has to stay in the hospital all the time, or doesn’t get to eat because they’re so busy, or has any other problems that make life less fun, but I sure hope they know Jesus too. He can take care of you like no one else ever could.

Well, Mommy’s naptime is almost over, so I better go. Thanks for reading my letter. And thanks to all those people who helped Mommy and Daddy take good care of me.

Love,
Abigail Faith

Abby is Home!

Posted on December 2, 2013 by justeeni

The Taylor Family is tired, happy, and finally together. We are taking the time today to just be a family, so I will soon give a more thorough update. For now, I’ll leave you with this:

Abby Update: 79 Days Old

Posted on November 29, 2013 by justeeni

Gestation: 39 weeks, 6 days
Weight: 5 pounds, 9 ounces
Feedings: Working up to 60 ml of unfortified milk every three hours by bottle

Wednesday afternoon Abby had an upper GI done. There was some disagreement about whether to leave in her post-pyloric feeding tube or if that would mess up the reading, and eventually the neonatologists won against the surgery team and the tube was left in. The test confirmed the suspected diagnosis: pyloric stenosis.

Dan, Lydia and I were about to head out to Bible study when the surgery team came in and told us that the had actually been unclear because the feeding tube had been left in. However, they were able to feel Abby’s pylorus from the outside and confirm that it did seem enlarged and they agreed that she would need surgery. However, only one surgery team works on holidays and, as the next day was Thanksgiving, they said her surgery would take place on Friday (today).

Midway through Bible study Dan got a phone call from the pediatric surgeon. They had gotten Abby in for surgery the next day, despite the holiday. She was scheduled for surgery at 8 AM and would be taken down to anesthesia at 7:30. The surgery team would round at 6 AM to answer any of our questions.

We hurried home early from Bible study and went to sleep. At 3:30 AM we got a call from one of the residents expressing a concern that Abby wasn’t ready for surgery because her blood count was so low. Because they never had us sign any admittance papers when we arrived at the hospital (!) they had never received our permission to do a blood transfusion if it was necessary and so they had to call and get our permission. It was just last week that I spent an entire afternoon trying to convince the doctors that Abby needed to be on iron because she is anemic and they didn’t believe me. Now she was so anemic that they had to give her extra blood just so she could be stable enough for her surgery.

We agreed to the transfusion and headed in for a long day at the hospital. Just before Abby was taken in to the operating room, another baby needed an emergency surgery and we got bumped back a few hours. Finally, at 11:03 AM, Abby was in surgery.

We enjoyed a visit from Dan’s brother and sister-in-law while we waited the two to three hours it would take for Abby’s pylorus and hernia surgeries. After only 1 1/2 hours, the doctor called to say they were finished. He had warned us earlier that if anything went wrong they would quit the surgery early. So I tried not to freak out as we waited for the doctor to come out and talk to us. There was no need to worry though, because the surgery went great. They were able to do the pylorus and hernia laproscopically, which means they only had to make a few tiny incisions instead of one large one across Abby’s whole belly.

After enjoying a turkey dinner donated to the NICU by Zingerman’s, we hurried back to Abby’s room. She was still sleeping and looked like she had just gotten beat up. Her eyes were swollen, she had bandages on her belly and an IV in, and when she finally woke up she moaned like a wounded baby animal.

At 4 PM Abby was awake enough to try to eat. The plan was to gradually increase feeds starting with a small amount of unfortified milk until she could handle 60 ml. Any time Abby finished a feed without spitting up, her amount could be increased for the next feed. If she couldn’t finish or did spit up, we would have to stay at that amount until she could tolerate it. When she reached 60 ml, she would be ready (from a surgery standpoint) to go home. However, because Abby was a preemie, they would probably have to make sure she was gaining weight, introduce a fortifier, slowly wait to see if she could tolerate the fortifier in increasing amounts, and take care of any last “preemie things”.

The fortifier has always been a concern to us. I was concerned that Abby would make it to full feeds and then get stuck not tolerating a fortifier. Who knew how long it could take to figure out what would be best for Abby?

So here are Abby’s numbers. The goal is 60 ml every three hours:

4 PM : 3 ml
7 PM : 15 ml
10 PM : 3 ml
1 AM : 15 ml
4 AM : 25 ml, but she spit up
7 AM : 30 ml
10 AM : 45 ml
1 PM : 49 ml

Around noon the surgery team stopped by to tell me that Abby is doing great. Upon further questioning, our nurse found out that surgery was considering treating Abby like a “term” baby, which means she would not need a fortifier. Instead, she would have regular weight checks to make sure she was gaining weight once home, and add fortifiers only if necessary. Our nurse assured surgery that plan would be “perfect for this family”. So, once Abby pleases the team with her eating,she will be home free…maybe even this weekend!

Lydia, on the other hand, started throwing up last night and is now sick at home with Dan while I stay at the hospital (hence the lack of pictures). We would appreciate prayers that Lydia would recover quickly and that Dan and I would stay healthy.

Praise the Lord
We are thanking God for:
-Abby’s speedy and successful surgeries
-no fortifier!
-that Abby may come home soon

Please Pray:
-that Abby will be able to tolerate 60 ml…and soon!
-that Lydia would recover quickly and the rest of us would stay healthy

Abby Update: 10 Weeks Old

Posted on November 20, 2013 by justeeni

Gestation: 38 weeks, 4 days
Weight: 4 pounds, 14 ounces
Feedings: Continuous feeds of unfortified milk through a post-pyloric feeding tube on a pump running at 9 ml per hour

Abby didn’t get her post-pyloric feeding tube placed successfully until 6:45 PM on Monday night. Eventually she had to be taken down to fluoroscopy (which is kind of like a real-time x-ray video), where they could actually see to put the tube down past her pylorus. After the tube was placed feedings were started at 5 ml per hour.

Since having the feeding tube placed, Abby has occasionally spit up what looks like (excuse me for being graphic) bloody mucus. The doctor isn’t concerned about this, as it it probably just from all the irritation that occurred by poking that feeding tube down her throat all day.

Tuesday morning Abby’s electrolytes were almost normal, but her potassium was still low (2.9, but they would like it to be 3.5). So it was another day of waiting as her feeds were bumped up to 9 ml per hour.

Tuesday night Abby had an eye exam which came back normal, but the blood vessels in her eyes are still developing. She’ll have a follow-up visit in two weeks.

Today Abby’s potassium was still low, but everything else appears to be ok, so she is off of the IV and only receiving the milk feeds through her tube. She will receive oral potassium supplements and they’ll check her levels on Friday morning. Her feeds will be increased by 1 ml per hour every four hours until she reaches 13 ml per hour sometime tonight, which will be considered “full feeds” for her weight (which is now 4 pounds, 14 ounces, the biggest she’s ever been).

If Abby demonstrates that she can tolerate full feeds well (and hopefully starts stooling!) then tomorrow they will introduce a fortifier to see if she can tolerate the fortifier fed to her intestines. If she tolerates the fortifier, then we will be able to introduce oral feeding again and try to identify where the problem lies. She could still have a surgery on her pylorus, but we’ll just have to wait and see.

We asked the doctor today about Abby’s infrequent stooling and found out that they aren’t concerned at all. If Abby only stools once a week, they’re fine with that. As long as Abby’s stools aren’t dried out or causing any pain and her tummy stays soft, they’ll let her go as long as she needs to without giving a suppository. And Abby’s tummy is nice and soft.

Our big prayer request is that the doctor will decide to give Abby a fortifier other than HMF, the fortifier they like to use for all their babies, and the one that seems to be giving Abby the most problems. Or, if they do start her on HMF, that she’ll be able to tolerate it better when it’s not going into her stomach, but past it.

Dan’s Mom came down today and is, as I type, cleaning our apartment for us. After seeing Abby, she feels a lot better than she did just reading the updates, so I thought I would include her observations for the encouragement of anyone who doesn’t get to see Abby in person. Abby is very healthy. In fact, they have mentioned the possibility of moving her out of the intensive care unit, because her issues are just not intensive care material anymore. Abby’s only problem, that we know of now, is that she can’t keep her food down. She is alert and comfortable (except when they’re poking her for blood work) and looks like a small, but very healthy baby. And, even though we contribute some of this to fluid retention from the IV and not stooling for 6 days, she is up to a whopping 4 pounds, 14 ounces.

Praise the Lord
We are thanking God for:
-that Abby is almost to full feeds of unfortified milk and off the IV
-that Abby’s eye exam was normal
-that Abby is gaining a lot of weight

Please Pray:
-that Abby’s potassium will come up quickly
-that Abby will tolerate her full feeds very well (and stool!)
-that the doctors will decide to put Abby on a “friendlier” fortifier than HMF

Abby Update: 68 Days Old

Posted on November 18, 2013 by justeeni

Gestation: 38 weeks, 2 days
Weight: 4 pounds, 11 ounces
Feedings: Only an IV (TPN)

It has been a whirlwind weekend. We have gone back and forth with the ups and downs of transferring to Motts, thinking we had a diagnosis, then going back to not knowing what the problem is.

Friday night was Abby’s worst night yet, as far as spit up goes. During the night they decided to give her an IV so she wouldn’t get dehydrated, and it turned out to be a good thing they did.

Saturday morning Abby got an ultrasound while she was eating, which seemed to indicate a diagnosis: pyloric stenosis. The pylorus is the opening between the stomach and the small intestine. The esophageal sphincter is the opening between the esophagus and the stomach. In a properly functioning body the esophageal sphincter opens when food comes down the esophagus and then closes. After an amount of time, the pylorus opens and allows the broken down food to move into the intestines. Pyloric stenosis is a problem where the pylorus is shut and never opens, so no food can make it past the stomach. Symptoms include constipation or infrequent stools and frequent, even projectile, vomiting.

During an “Upper GI series” a while ago, it was observed that Abby’s esophageal sphincter was “wide open” and very floppy, contributing to her severe reflux. During that test, however, the pylorus was spasming open and closed.

Abby’s ultrasound on Saturday morning showed, what looked like, pyloric stenosis. Because of the conflicting results of the previous upper GI and the more recent ultrasound, the doctors decided to wait a day and repeat the test. If two more tests (another GI and another ultrasound) agreed that Abby had pyloric stenosis, surgery would be scheduled immediately to fix the problem. In the meantime, they kept Abby on an IV, then added lipids (fats) and TPN (total parenteral nutrition – a prescription of fluids providing the nutrition Abby needs). Because it can be dangerous for young babies to throw up so often, those with suspected pylorus stenosis aren’t allowed to eat by mouth. However, much to our dismay, TPNs don’t come until 9 PM at Motts and Abby stopped eating at 8 AM. So it was a long stretch for Abby without “food”. Even after she got the TPN, it was given through the IV so Abby still felt hungry.

Sunday we arrived only to find out that the ultrasound showed (again) a spasming pylorus. In true pyloric stenosis the pylorus will never open, therefore Abby doesn’t have it. So Sunday we spent the day with our poor little girl, holding her as much as possible. She still felt hungry so she would often suck on our fingers. She even found her own fingers and, once or twice, we caught her sucking her thumb.

This morning Abby looked swollen to us, probably from retaining fluid from the IV. Her electrolytes were way out of balance from throwing up so much and they still hadn’t stabilized. According to the Motts scales, Abby now weighs 4 pounds and 11 ounces. However, Friday the scales said she weighed 4 pounds, 7 ounces (up two ounces from her pre-ambulance ride weight). So somehow there’s a discrepancy between hospital weights, but no matter, Abby is gaining.

At rounds we heard the game plan (for today). Since Abby’s electrolytes still weren’t corrected, it would be silly to start feeding her by mouth again and have her throw up and mess them up more. In the meantime she will stay on the IV and be fed through a post pyloric feeding tube, that is, a feeding tube fed down through her stomach and the pylorus into the intestines. That way Abby can “eat” milk without the continuous spit up. For now, she is being fed unfortified breast milk to see how she tolerates it. Later, we’ll figure out details with fortification.

When we left the hospital this afternoon our nurse was working to get a feeding tube in. The first attempt coiled up in Abby’s stomach and they placed her on her side for an hour to see if it would work its way down past the pylorus. As soon as the feeding tube is in place, Abby will start receiving a continuous stream of milk into her intestines. (And she won’t feel hungry anymore!)

That’s really all we know for now. There won’t be any more changes until either her electrolytes are corrected or she demonstrates that she can tolerate the milk through the post pyloric feeding tube. The neonatologist was planning to talk with the surgery team about Abby’s pylorus, as he seems to think she’s just going to end up having surgery anyway.

Praise the Lord
We are thanking God for:
-that Abby will get to have milk again soon
-that while we don’t have a diagnosis, we are moving in the right direction

Please Pray:
-that Abby’s electrolytes will be balanced soon
-wisdom for the doctors as we decide what our next steps should be
-for our continuing to adjust to our new hospital

Abby Update: 66 Days Old

Posted on November 16, 2013 by justeeni

Gestation: 38 weeks
Weight: 4 pounds, 5 ounces
Feedings: However much she wants by bottle, every three hours

On Thursday we were disappointed, once again, to hear that Abby had lost 2 grams. Two grams is almost nothing, but it’s not a gain and it really confirmed that Abby was not making progress as we had hoped. After a disappointing day and lots of spit up, I sat and held Abby for a long time that night praying about what to do next.

I got a couple of ideas, some new medicine that could be tried and maybe a different formula, which I talked over with our nurse. On the car ride home I spent more time praying and was very encouraged. I was pondering the “Why?” questions. You know, “Why is this happening to us?”, and “How can this possibly be for good?”. It’s not that I was asking those questions myself, but that I was realizing how it has never been a struggle to be since Abby’s birth. Though all the ups and downs of this season, I haven’t questioned that this is what God ordained and this is for the best.

I went on to reflect that I really have been learning a lot and can see God building my character like the Bible says in Romans 5: “we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” I thought about the many Christians who have had to learn some of the same lessons that I am, but by losing a child. How grateful I am that God is teaching us these things in a more merciful way, by not actually taking Abigail from us!

The night ended with my having a very clear sense that God is carrying me and the feeling that I need to keep being carried by Him, no matter what comes next.

The next morning I was remembering these lessons as we walked into St. Joe’s, the hospital where Abby was staying. Though we missed rounds, the doctor sought us out to talk and dropped a bombshell (as she put it). Abby had not gained weight again. She had lost 4 grams. Looking back over the past two weeks made it very clear that Abby had ceased making any forward progress and the doctors at St. Joe’s had essentially done all they could for her. There is a gastrointestinal (GI) specialist at the University of Michigan who could help, but we would have to transfer to Mott Children’s Hospital in Ann Arbor to be able to see him.

So, it came about that our departure from St. Joe’s was not the happy one of a discharge, but the disappointing situation of a transport. Dan took Lydia to work so I could stay with Abby all along, and I got to be with her as they loaded her into a transport isolette, wheeled her through the hospital and outside, and loaded her into the ambulance. I got to ride along in the front seat and come with her as she was resettled in her sixth bedspace so far, now at Motts. For the record, Abby enjoyed her first car ride. She slept the entire time, from being in her crib at St. Joe’s until her next feeding time in her crib at UofM. She didn’t open her eyes once during the whole trip, but squinted whenever the sun came in through the window (her first taste of sunlight, crazy to think).

The first hour was very crazy with lots of new faces and lots of chaos as Abby was settled in and I got the grand tour. UofM gives patients all private rooms and nursing moms get three free meal orders a day. There’s a big playroom for healthy kiddos including a complete playground indoors. But even with those perks, it’s been a rough transition.

You might think all NICUs work the same, but they don’t. Of course they are similar, but every NICU is run differently, and (as you might expect from the UofM) Mott’s is much less personal. There are also something like a million (exaggeration) neonatologists instead for the five we had at St. Joe’s. But that doesn’t matter too much because the resident is really the one making calls for Abby these days.

However, we have always said that St. Joe’s is our preferred hospital unless our baby has something weird, in which case UofM would be better. There are more specialists and they have much more experience with the weird cases. And with Abby’s excessive spit up, she qualifies as having something weird.

Abby did ok for the first feeding. Not a lot of spit up. Took the whole bottle. Went right to sleep. At her second feeding she spit up all over Dan. After she was finished and settled in her bed, she spit up again, and again, and again. The nurse came in to change all her clothes which only aggravated the situation and she ended up wrapping her in blankets and putting her back in the isolette (they had moved her to an open crib that morning).

Abby is back on HMF (human milk fortifier), which is the very first fortifier she was on, because the doctors want to get a baseline for what works and doesn’t. We argued a little (we were very tired and worn out and maybe a little too forceful) asking if she could please be put on Nutramigen, because that’s the one that has worked out the best so far. The resident said they would observe her overnight and discuss a change in the morning.

Dan and I understand and appreciate the reasons for Abby’s transfer. We are hoping the GI specialist will be able to get to the bottom of Abby’s issues, and that she’ll be able to come home soon. However, there’s a different attitude in the new hospital, less of a drive to get Abby home, which is hard for us as we thought she would be home two and a half weeks ago. Poor little Abby is showing the signs of her spit up. She is very skinny now and looks almost like she did as a newborn two months ago. (She is bigger, but now just as skinny) Dan says she looks a little better than that, mostly because she opens her eyes now. We are thankful that she is still bright eyes and energetic, but we think it’s likely that we will soon find Abby on an IV unless things turn around quickly.

We trust and we know that God is still carrying us. He is working this all out for good. It was the greatest comfort to me to know that, as we left all of the familiarity of St. Joe’s, the same God went with us to UofM and will take care of us there.

Jesus Christ is the same yesterday and today and forever. Hebrews 13:8

Praise the Lord
We are thanking God for:
-a chance to see a GI specialist
-new hope with doctors more experienced in weirdnesses
-some of the perks of being at Motts

Please Pray:
-that Abby’s new caregivers will get to know her quickly
-that Abby won’t get worse in the meantime
-that we’ll be able to get to the bottom of Abby’s issues
-that Dan and I will be able to adjust to Abby’s new hospital

MI Taylor Family

We live in Michigan.

Tag Archives: preemie