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: 9 Weeks Old

Posted on November 13, 2013 by justeeni

Gestation: 37 weeks, 4 days
Weight: 4 pounds, 5 ounces
Feedings: However much she wants by bottle, every three hours

Right now, everyone is just waiting on Abby. On Monday she had lost 10 grams (1/3 of an ounce). Tuesday she stayed the same. Today, however, she gained 36 grams (1 ounce)!

Every feeding time has become a circus act of trying to feed, frequently burp, and hold Abby all while moving her as little as possible. I think it might be working, even though she still spits up at almost every feed. The nice part for us is that she eats like a champ, and frequently wants to eat more after spitting up. On Monday night Abby finally nursed again, and then spit up more than she took in. Then she followed up with a full bottle which she did manage to keep down. Other than that one feed Abby still won’t nurse. We’re trying not to focus on that right now and just try to get enough food in her however she will take it.

Edit: Abby did nurse again this morning and took in 42 milliliters, a full feed!

Abby’s blood and urine cultures came back looking good, which means she doesn’t have an infection. Still, we’re holding off on the hernia surgery until she is a little more stable, consistently gaining weight. It’s possible that she may have her surgery Monday morning.

Abby’s isolette temperature is set at 27.5 degrees Celsius. Every three hours, they take her temperature, and if it’s a little high, they’ll turn down the isolette by half a degree. When it gets down to 26, she can move to an open crib again.

Everyone was so excited at rounds today because of Abby’s big weight gain, that they jumped right to talking about discharge. No, she is not ready to go home yet. But now that she gained weight once, everyone is eager to send her home soon (babies always do better once they get home).

Dan and I are hanging in there. One night as we walked into the hospital, I was insisting that I can’t take any more. It’s one thing when you feel like you can’t take it. It’s another matter when your body starts having problems. Dan and I have been getting a lot of headaches, and mine threaten to become migraines that make me sick and keep me from being able to do much. Dan suggested that it must be possible to handle all of this without “freaking out” or completely “losing it”, because “Hudson Taylor could do it”. I pointed out that, while Hudson Taylor was able to handle trials, heartache, responsibility, and all other sorts of stress all while calmly and peacefully “resting in Jesus”, he did have two wives that both died. Well, in light of our stress and that conversation, we’ve been re-reading a favorite book of ours, Hudson Taylor’s Spiritual Secret during our numerous car rides to and from the hospital. I think it might be helping.

Praise the Lord
We are thanking God for:
-that Abby gained weight!
-that it seems like Abby might be spitting up slightly less
-that Abby doesn’t have an infection
-a couple of successful nursing attempts in the past few days
-Hudson Taylor’s story and the encouragement it has given us

Please Pray:
-that Abby will continue to gain weight, spit up less, and keep her temperature up
-that our family will continue to “hang in there” until Abby comes home
-that Abby won’t have any more setbacks

Abby Update: 2 Months Old!

Posted on November 11, 2013 by justeeni

Gestation: 37 weeks, 2 days
Weight: 4 pounds, 5 ounces
Feedings: However much she wants by bottle, every three hours

Abby seems to be slowly improving. By Saturday morning, she was pulling new tricks with tons of periodic breathing and some cardiorespiratory events. Periodic breathing is when babies slow their breathing way down for a while then start breathing very quickly to “catch up”, and then they repeat the cycle. Often associated with periodic breathing are respiratory events, which are when the breathing and/or heart rates drop. Abby pleased us early on by having almost no events, but now that she’s losing weight everything else seems to be unraveling as well. So, she’s been having events.

Abby also pulled out her feeding tube again. She had gone three days without stooling and was starting to have residuals again (leftovers in her tummy that hadn’t digested). Our concern was that every time this has happened in the past, the doctors have started subtracting the residual from her next feed. For example, Abby was getting 39 ml feeds; if she had 18 ml residual they would only give her 21 ml at the next feeding time. For a baby who is already losing weight, we didn’t want them subtracting from her feeds! So the doctor decided to leave the feeding tube out and stop checking residuals. So far, Abby’s taken enough milk by mouth to keep the tube out! She has not, however, been nursing well for the past few days.

The doctor was wringing her hands on Saturday because she was at a loss to know how else to help poor Abby. Our sweet nurses have been patiently feeding Abby slowly, burping her often, holding her upright for half an hour after feedings, and often changing out of spit up covered scrubs despite all of their earnest efforts. It’s hard to say what, if anything is helping. Some of you have given suggestions (different medicines, adding oatmeal to the milk) and we’ve been talking over all of these with the doctors. In fact, Abby has become quite a demanding baby as far as doctors and nurses are concerned and it is not uncommon to find a small crowd gathered around her isolette trying to figure out what to do next or asking for updates on how she did at the last feed.

On Sunday, finally, Abby gained some weight! She will continue to be weighed daily (instead of every other) until she is more stable. Last night some tests were taken using urine and blood to rule out the possibility that Abby has some sort of infection contributing to her troubles. (I don’t know the results of those tests yet)

If Abby becomes more stable, the doctors are hoping to have her hernia surgery done this week, as early as possible. The main reason is, it would be a bummer to get her all ready for discharge and then send her in for surgery and get set back a few days. Why not do the surgery while she’s still not ready to go home, so she can recover while she had to be here anyway and get her home a little fast, our doctor suggested. Of course, they won’t do the surgery unless she is stable, has no infections, and will be able to recover without any added risks.

Sundays, as I’ve mentioned before, are always the hardest days. A part of that is that on Sunday we go to church in the morning and miss our morning visit with Abby. We visit in the early afternoon, instead, straight from church, and don’t get home until around 5. Then it’s nap time, dinner time, and back to the hospital. As a result, we often don’t eat any lunch (or not much of one in the car) and our nap time is often cut short. Everything proved to be a little too much for me this week and I came down with a relentless headache during church which lasted all day. Some sweet friends had us over for dinner and I spent that time lying on their couch. Ultimately I threw up, missed my evening visit to the hospital, and rested at home for a few extra hours. Today I’m feeling much better and should be able to get to the hospital for the 2 pm feeding. (We are sure that I’m not sick, the throwing up was due to the headache, and I am safe to visit Abby)

Lydia hasn’t seen Abby all weekend because at the end of last week she had a runny nose. She was all set to go see her today, but woke up with a new runny nose. So it’ll be at least a couple of days more before she’ll be allowed in the NICU.

The Doctor who was at the hospital Saturday is also on next week, Monday through Friday. She is trying hard to get Abby home to us (it is well known that preemies do much better when they get home, and, of course, their family does too!). She said that if Abby doesn’t get sent home this week, she’s going to get her home the next week, which would be in time for Thanksgiving. However, we know that unexpected things can happen and it’s impossible to know that Abby will be ready that soon. We’re hoping so.

Praise the Lord
We are thanking God for:
-that Abby is taking her feeds by mouth again and that the feeding tube is gone
-that Abby gained some weight on Sunday (still 4 lb, 5 oz, but closer to 4 lb, 6 oz now)

Please Pray:
-that Abby will gain weight, spit up less, and keep her temperature up
-that Abby will stop having events
-that Abby doesn’t have an infection
-that Abby will be able to have her surgery this week
-that Abby would start nursing again

Abby Update: 54 Days Old

Posted on November 4, 2013 by justeeni

Gestation: 36 weeks, 2 days
Weight: Not sure…
Feedings: However much she wants by bottle

Between going to church and visiting Abby yesterday Lydia didn’t get laid down for a nap until well after 4:00. And when we did lay her down she was so overtired that she just cried and screamed. Finally I picked her up and sat with her curled up and sniffling in my lap as I rocked in the glider.

Overtired myself, I thought, “I can’t do this anymore.”

For a while my mind continued to list all of the things I have to do and how I just can’t take anymore. Then, it was almost like someone said to me, “What are you doing right now?”

Rocking Lydia.

Then that’s all you need to do.

And so, in a simple way I was reminded that God never promises strength in advance for everything we have to do next, but He certainly provides the strength we need for the moment. So Dan and I have been living lately, drawing moment by moment the strength we need from the only One who won’t ever run out.

Are you ready for a crazy weekend?

Friday, I left you all with Lydia sick and Abby about to get an abdominal x-ray. Thanks, I believe, to the goodness of God and lots of prayers, Lydia was sick and better all within three hours. It was a rough weekend keeping her out of the NICU, but it was really only for a couple of days and we made it through. Friday night was almost a disaster for me when Dan went to see Abby and I stayed home with Lydia. I decided it must be a crime to keep a parent from being allowed to see their baby. Lydia and I did some projects together to pass the time and ended up setting up Abby’s bassinet for when she comes home. We made it.

Abby’s x-ray was normal. However, she continued to spit up through the weekend, and she continued not stooling.

On Saturday, while Dan was helping feed Abby in the morning, she got her feeding tube out. Dan quietly suggested that if she was eating well maybe they would just leave it out this time. At the next feeding, the nurse put a new feeding tube in, but Abby promptly got that one out too. So they left it out! At 5:00 on Saturday night the doctor put in order that Abby was to be “Ad Lib”.

Ad lib feeding is usually the last step for NICU babies. It means they have taken their bottles well by mouth (Abby was at 74%) and are close to discharge. It’s usually only 24-48 hours before they go home, once they’re ad lib. During this time, babies can eat any time they are awake and looking hungry within 2-4 hours from their previous feeding time. While their amounts are still recorded, they can eat as much or as little as they want as long as they gain a decent amount of weight.

On Sunday, Abby had lost weight and still wasn’t stooling. She spit up at four feedings in a row. And no one was talking to us about discharge. So Dan and I sat down with a doctor and asked if Abby could just be taken off the fortifier. We did some research on the importance of supplementing calcium and phosphorus for preemies so that their bones mineralize well and we found one hopeful paper that suggesting fortifying is unnecessary. I’ll spare all of the details, but basically this whole topic of fortification is really unsure. Research hasn’t been going on long enough to determine if preemies who don’t receive the fortification may have weak bones as adults. Anyway, there seem to be pros and cons either way. Our doctor agreed to give Abby a trial off of any fortifier to see how she does. They’ll watch her calcium levels and weight gain in the process.

Then Dan and I found out that Abby might have been home by Tuesday as long as she had gained weight. This particular doctor (who is on all week) wasn’t concerned about her spit up or her lack of stools and thought she was ready to go. Dan and I quickly explained that we weren’t set on taking her off the fortifier. We just want our baby home! But the doctor seemed to think it was a good idea to try her off the fortifier and keep her in the hospital in the meantime.

Bummer.

Then we went on to tell us that a recent exam revealed that Abby has a left inguinal hernia. This is very common in men and in preemie boys (about 1/3 of preemie boys have a hernia), however it is less common in preemie girls. Of the 700-800 our NICU sees each year there are usually only one or two. So Abby decided to be one of the two this year. By tomorrow a pediatric surgeon will take a look at Abby and decide if she needs to have surgery quickly (this week) or if it’s less serious and we can wait a couple of weeks.

This weekend, more than ever, I have been tempted to “lose it”. That is why, as I was rocking Lydia Sunday afternoon, I wanted to say “I can’t take it anymore!” But we know that God is taking care of us, and of little Abby.

Hernia surgery, from my best understanding, isn’t too serious. But it is still surgery. We are eager to talk to the pediatric surgeon and find out more about how serious it actually is. Our neonatologist didn’t seem too concerned though.

Today we found out that Abby has been eating about every four hours. In all of her short little life, Abby has never been a very awake baby for feeding times. We always have to wake her up. You may remember our frustrations last week when our nurse wouldn’t give her a bottle because she always “looked sleepy”. We’ve slowly been assuring the nurses that Abby always looks sleepy but she still eats great. That in mind, we thought it might be nice to keep Abby on the three hour schedule. More frequent, smaller feeds might help with the whole spit up issue. And it’s what she’s been doing all along. Once again, our doctor said that sounded fine, so tonight we will switch back to a three-hour schedule and see how Abby does on that.

Between the three hour schedule and the unfortified milk, we are hoping Abby will have less spit up, more stools, and bette weight gain. As long as she is gaining weight, it is still possible she could come home this week. Or, it may take longer for clear results. Or, she may go back on the fortifier and we may have to wait to see how she transitions to that before taking her home.

I’m still trying to gather my edelweis. Right now Lydia is walking around wearing my flip-flops and carrying a reusable grocery bag. She recently walked around the corner and I heard her say, “Dear Jesus, please help Abigail sleeping, grow”. So Lydia is joining you all in your prayers, all of which are edelweis to this Mommy’s heart.

Praise the Lord
We are thanking God for:
-a doctor who will consider our ideas
-no more feeding tube!

Please Pray:
-that Abby will do well off the fortifier and on a three-hour schedule
-that Abby will eat well and gain weight
-that Abby will spit up less and stool more
-that Abby’s hernia won’t be serious, painful, or become incarcerated
-wisdom for all the doctors involved

Abby Update: 51 Days Old

Posted on November 1, 2013 by justeeni

Gestation: 35 weeks, 6 days
Weight: 4 pounds, 12 ounces
Feedings: 42 milliliters every 3 hours by gravity or bottle

The roller coaster continues. Yesterday our nurse was pleased to tell us that Abby took all of her feedings by bottle overnight. At rounds the doctor said she may come home next week.

Last night we found out that Abby stopped stooling again. And she’s been back to having residuals. I was surprised, though, when she nursed 20 ml and then took a few more from a bottle. Still, it’s hard not to wonder if we’re going to have a repeat situation with the residuals and no dirty diapers. The nurse ended up giving her a suppository, which helped her to go.

This morning Lydia started throwing up. Dan and I have tried to be very careful about staying away from anyone who is sick because of the strict NICU rules about not allowing sick people in. NICU rules are that no one is allowed in if they’ve had any signs of illness within the past 48 hours. Dan stayed home with Lydia while I went in to nurse and hold Abby this morning.

Abby didn’t want to nurse. She took all but the last 6 ml from her bottle. Then, as I was burping her, she had a big spit up. All over me. All over herself. The nurse put her back in her crib to change her clothes and she started spitting up more and just didn’t stop for a while. She even spit up out of her nose and pushed her feeding tube out. Everything was a mess and we had to call the doctor to report it all. The doctor put in orders for Abby to get an abdominal x-ray to find out what’s going on down there. I had to leave before they came to do the x-ray, so I guess you’ll all just remain in suspense until Monday. Hopefully it’s good news.

It’s possible that Abigail could have come down with whatever Lydia has. However, by this afternoon, Lydia appeared to be better. She’s eaten two meals without any problems. And she’s been energetic and cheerful. Now, she’s down for a nap (she was a little sleepier than her normal healthy self).

Praise the Lord
We are thanking God for:
-Abby’s progress on bottles (64% yesterday)
-the possibility of going home as early as next week (depending on recent developments)
-that Lydia appears to be improving already

Please Pray:
-that we would be able to figure out what is causing Abby’s residuals and spit ups, if anything of concern
-that Abby would not get sick (that goes for Dan and I too!)
-that Lydia would get better soon
-that Abby would eat more

Gathering the Edelweiss of God

Posted on October 30, 2013 by justeeni

Abby Update: 7 Weeks Old

Gestation: 35 weeks, 4 days
Weight: 4 pounds, 9 ounces
Feedings: 42 milliliters every 3 hours by gravity or bottle

Abby has been taking about half of her feeds by mouth lately. After our last nurse had a day off, we were greeted by a new nurse who was quite the opposite. She was determined to give Abby every chance she could to eat out of a bottle (which we appreciated). She agreed with us that Abby always looks sleepy but seems to do just fine at eating while she either is asleep or looks very much so. (I wanted to correct my previous post just a little and let everyone know that Dan didn’t actually snap and bite our nurse’s head off when she last tubed Abigail, as it may have sounded. We were disappointed at all the “tubing” but Dan was very calm and kind in his discussion with the nurse.)

Abby had her hearing test yesterday and passed. One step closer to discharge.

Abigail’s blood count for this week was a little low, 24.5. As I mentioned once before, if Abby’s blood count gets too low, she will need a transfusion. It’s pretty standard for the count to continue to decrease until around six weeks and then head back up. However, at seven weeks, Abby’s went down again (from 27 to 26.5, to 24.5 over the past three weeks). However, no one is too concerned at this point and she is already taking a multivitamin with iron.

The rest of us are doing ok. We sure miss Abby though. I was reading a book recently that introduced me to the helpful concept of “gathering edelweiss”. (You’ll have to forgive me for referencing a book that is referencing another book, but I don’t have any way of obtaining the original at the moment) The book I read is called Isobel Kuhn In the Arena and is part of an autobiography of the missionary, Isobel Kuhn. As she discusses her struggle with cancer, she says:

Another thing that has helped me to keep a sound mind is the gathering of the edelweiss of God. I owe this thought to Amy Carmichael. In her book Gold by Moonlight, she has a whole chapter on it. Edelweiss grows on barren mountain heights, and its soft beauty is a cheery surprise to the toiling climber. So Amy Carmichael likens it to the little things of joy which can always be found in any painful experience, if only we will gather them as we go along.

So I have been gathering edelweiss over the past few days and thought I would share some of my little flowers.

Last Thursday Dan, tired of being cooped up inside all the time, declared that we were going to the playground. Together we spent about 15 minutes playing on the slide, swings, and merry-go-round (before Mommy got too cold). It was 15 minutes full of fresh air and laughter that we all found to be a refreshing change from our usual routine.

On Monday evening I decided to take a few minutes to play with Lydia instead of tidy our living room before our babysitter came over. In the end, I didn’t even have time to clean up the dinner dishes before we left for the hospital (much less tidy the living room). Later that night I came home to find the dishes all washed and put away, the living room tidy, and the floor vacuumed. I was so relieved and grateful that I could have cried.

Last night and this morning I found myself with a few minutes to spare. I took the time to clear off the kitchen counter of all its clutter for the first time since we moved into this apartment. Now it looks so shiny and clean!

With our crazy schedule visiting Abby, it is sometimes difficult to find the time to cook and eat. So, Dan and I started getting Qdoba every Tuesday night for dinner. Once the Qdoba manager started recognizing Dan and successfully guessing our order, Dan told him that we have a baby in the hospital and that we’ll probably continue to come on Tuesdays until she is home. This week the manager got a quick update and more workers heard about little Abby while we ordered our burritos. When we neared the cash register to pay, the manager swiped his card and said he wanted to buy our meal this time. He handed the receipt to Dan out of habit, and down at the bottom was the total: $0.00.

Fifteen minutes at the playground. An uncluttered kitchen. A late night free from chores. A delicious free meal. These are my little flowers that I have been gathering into a bouquet, now on display for you all to enjoy.

Praise the Lord
We are thanking God for:
-Abby’s hearing test results
-Abby seems to be digesting the Nutramigen well
-the edelweiss of God

Please Pray:
-that Abby would eat more
-that Abby’s blood count would start to increase soon

Abby Update: 47 Days Old

Posted on October 28, 2013 by justeeni

Gestation: 35 weeks, 2 days
Weight: 4 pounds, 7 ounces
Feedings: 40 milliliters every 3 hours by gravity or bottle

Total feeds by mouth
Friday: 27%
Saturday: 46%
Sunday: 31%

We were happy to hear that Abby had gained weight by the time she was weighed on Saturday. She has been receiving milk fortified with Nutramigen and, so far, seems to be handling it ok. She is back to spitting up a little and having a little residual, but nothing compared to the issues she was having on the other formula fortifier. Today we had a long chat with the doctor about different ways to fortify and what exactly Abby needs from the fortifier. Primarily Abby needs it for calcium, phosphorus, and the extra calories. We’re waiting to hear if there is any other way to supplement the calcium and phosphorus so that once we transition Abby off of bottles, she can still be getting those to help her bones grow strong. It doesn’t really matter (according to the doctor) if I’m getting a lot of calcium and phosphorus, because term babies don’t need it so it just isn’t in a mom’s milk in the amounts a preemie needs.

We also asked the doctor what all is keeping Abby from coming home. It’s just eating. As soon as she can take all of her milk by mouth, she’s home free (unless there are any unexpected problems). At first, we thought this would be a quick and easy ordeal. However, Abby is slower to pick up on bottle feeding than Lydia was. Day after day we would come home so disappointed that I finally gave up any come-home goals. If she’s home by Christmas, I’ll be happy. If she’s home by Thanksgiving, I’ll be very happy. I’m not allowing myself to think any further than that.

When Dan and I find something funny, ironic, or so overwhelming that we need some comic relief, we talk about our made-up sit com called “Life in the NICU”. Season One revolved around our neighbor Baby and his family on the NICU side. Often, the curtains around our bedsides would be closed, but they don’t block out sound and neighbor Baby’s family was quite comical. As a twist near the end of Season One, we were transferred to Special Care and found ourselves neighbors with the same Baby. He’s been home for a while now, so Season One came to an end.

Well “Life in the NICU” surprised us with a Season Two premiere this weekend! Early episodes revolved around one nurse, in particular, who we’ve had for the past few days. Every time we came in to the hospital, we would ask how her feeds went while we were gone and she would always say the same thing, “She was looking a little sleepy, so I tubed her” (fed her through her feeding tube, that is). Over and over we’d hear the same thing. However, whenever we fed her or a different nurse had her, she would eat well even though she did look sleepy. The latest episode finally ended when Dan about lost it hearing her say “She was looking a little sleepy, so I tubed her”. He explained that she always looks sleepy, but still eats for us (and everyone else who tries to feed her). At the last feed our nurse gave her a bottle, even though she looked sleepy, and Abby didn’t take any of it.

So, last night was when I gave up my goals and surrendered to just living this lifestyle for a while longer. In light of my recent change of mind, I thought I would share a typical Monday schedule for our family:

7ish AM: Rise ‘n Shine
wake up, brush teeth, pump, get breakfast ready

7:45 AM: Breakfast

8:15 AM: Clean Up
put away clean dishes, load dishwasher, take a break to play with Lydia, pack Dan’s lunch

8:45 AM: Bath time for Lydia

9:10 AM: Morning chores
fold and put away laundry, reload washer, get dressed, pump, transfer yesterday’s milk from kitchen freezer to chest freezer, start afternoon blog post

10:30 AM: Get Ready and Go
pack up everything to bring to hospital (pump, purse, diaper bag), get everyone ready (socks, shoes, coats), head out

11:00 AM: Abby’s late morning feeding
get update from nurse, change diaper, take temp, switch pulse ox, do foot exercises, nurse, walk around with Lydia while Dan holds Abby and feeds her a bottle if she’s still awake, pump, say goodbye, head home

1:30 PM: Lunch (Dan goes to work)
eat (leftovers), clean up, update blog

3:30 PM: Afternoon chores
pump, start dinner, get Lydia up from her nap

5:30 PM: Dinner
eat, Bible Time, clean up, pump

6:30 PM: Bedtime routine
get Lydia ready for bed, play and read until 7ish

7:00 PM: Babysitters arrive, head to hospital

8:00 PM: Evening Feeding

10:30 PM: Home from hospital, sleep

Praise the Lord
We are thanking God for:
-weight gain!
-Abby seems to be digesting the Nutramigen well enough

Please Pray:
-that Abby will learn to eat soon
-that Abby will have the energy and motivation to eat at every feeding
-for our patience as we approach our ninth week in the NICU

Abby Update: 44 Days Old

Posted on October 25, 2013 by justeeni

Gestation: 34 weeks, 6 days
Weight: 4 pounds, 6 ounces
Feedings: 40 milliliters every 3 hours by gravity or bottle

Wednesday Night: nursed 14 ml
Thursday Morning: nursed 14, bottled 24
Thursday Night: nursed 16, bottled 25
Friday Morning: nursed 30, bottled 8

Wednesday total: 44%
Thursday total: 42%

The past couple days have been much better for Abby. At 11 AM yesterday (24 hours after they stopped the fortification) she had the first dirty diaper without a suppository in over a week. She had two more Wednesday night! Dan and I returned to the NICU Wednesday evening to find this note from Abby’s morning nurse letting us know the news:

Wednesday night, some of the ladies from our Bible study came to the hospital and each took a turn praying for Abby at her crib side. It is exciting to hear such prayers and then come back Thursday to find out that Abby was having quite the turnaround.

Since stopping the fortification, Abby has also had less residual (leftover milk in her tummy) at each feeding. In the past she has had residuals greater than 10 ml at times, but in the past couple of days she has consistently had 0 to 1 ml. She has also started nursing a little better, although she’s still not up to her numbers from last week. And she’s been taking more and more of her bottles. Last night was the first time she finished a bottle that either Dan or I had fed her. And this morning she was back to her old self, taking in 75% of her feeding while nursing (and 20% more by bottle).

The problem is that Abby didn’t gain any weight. She didn’t lose any, but she didn’t gain any either. The doctor is giving her until Saturday to see if she starts gaining. If not, we have to figure out another way to get her extra calories. Another issue is that Abby needs extra calcium and phosphorus to help her bones grow. If she was still in utero, she would be getting these things from Mommy, but as a preemie, she’s not able to get enough of these just from Mom’s milk. Depending on the weight gain Saturday, she may be started on a different fortifier called and “elemental formula” that would provide what she needs while being easier to digest than regular formula.

Abby also had a follow-up head ultrasound yesterday to make sure there is still no bleeding in her brain. Dan and I happened to be there for the ultrasound, and everything came back normal.

Praise the Lord
We are thanking God for:
-drastically improved digestion off of the fortifier
-better nursing and bottle feeding
-no brain damage from being born early

Please Pray:
-that Abby will have a substantial weight gain (at least 1-2 ounces) tonight
-that Abby will have more energy at meal times
-that Abby would continue to take more and more of her feeds by mouth
-for wisdom for Dan and I and the doctor as we decide how to fortify Abby’s milk

Abby Update: 6 Weeks Old

Posted on October 23, 2013 by justeeni

Gestation: 34 weeks, 4 days
Weight: 4 pounds, 6 ounces
Feedings: 40 milliliters every 3 hours by gravity or bottle

Monday Night: nursed 14 ml
Tuesday Morning: nursed 14 ml
Tuesday Night: 0
Wednesday Morning: nursed 6 ml, bottled 19 ml

Abigail is still struggling. She has yet to stool on her own, and has been given suppositories once or twice in the past couple of days. Monday night she was given a suppository at 11 PM. By 2 AM she had a dirty diaper and when it was time to eat she ate her first complete bottle! This further supports our thesis that if she could just start to go on her own, she would be back on track! She hasn’t nursed well since Saturday but is taking a larger portion of her feeds by bottle.

Yesterday at rounds we started talking to the doctor about the trouble Abby’s been having. She suggested that we’re going to need to try some different things to help her start going on her own, because it’s obviously becoming quite a problem. Dan asked if, before trying anything too strange, we take her off the formula (fortifier) to see if she digests a little better. Even though the nutritionalist insisted that Abby needs the fortifier, the doctor wanted to see what she’d do off of it.

For Abby’s first few feeds on pure milk, she had little to no residual in her tummy (leftover milk from the previous feed)! However, she still hasn’t been able to stool. The major concern is that without the fortifier she won’t get enough calories to grow. At just 34 1/2 weeks (gestation) she’s really not even “supposed” to be eating yet, so all of the energy she burns by being awake and trying to eat requires more calories than she’s getting from straight milk. Tonight she’s scheduled for the next weighing so we’ll see how she does.

Dan and I are concerned that she might do better without the fortifier, if she’s given enough time to get everything else out of her system, which she obviously hasn’t done yet. However, we don’t know how long they’ll let her try because it’s routine practice to keep all preemie’s on those extra calories.

Praise the Lord
We are thanking God for:
-a chance to try feeding Abby pure milk without anything added
-that Abby is continuing to increase the amount of milk she’s taking my mouth
-no spit ups in the past couple of days!

Please Pray:
-that Abby will not become suppository dependent, that she would start to go on her own
-that Abby will have a substantial weight gain (at least 1-2 ounces) tonight
-that taking Abby off the fortifier would help her digest better and that the results would be clear
-that the doctors won’t put Abby back on the fortifier too soon, and miss any positive results that may occur
-that Abby won’t be so sleepy when it’s time to eat
-that Abby would get back to nursing more than half of her feeds

Abby Update: 40 Days Old

Posted on October 21, 2013 by justeeni

Gestation: 34 weeks, 2 days
Weight: 4 pounds, 4 ounces
Feedings: 39 milliliters fortified to 24 cal every 3 hours by gravity or bottle

It has been a hard weekend for Abby. Here are her numbers from nursing and bottle attempts.

Friday Evening: Nursed 0, Bottled 10
Saturday Morning: Nursed 0
Saturday Evening: Nursed 34!
Sunday Afternoon: Nursed 0
Sunday Evening: Nursed 10 (Mommy’s estimate), Spit up 10, Nursed 12 more
Monday Morning: Nursed 0, Bottled 6

Percent of total feeds taken by mouth Saturday: 20%
Percent of total feeds taken by mouth Sunday: 18%

Friday night we gave Abby her first bottle. She took 10, and went on to take about 6 or 7 ml per feeding over the weekend. In the past day she has upped that to about 12 per feeding and she took half of her bottle (!) at one feeding this morning.

Abigail has been and still is fighting with spit up and digestive problems. She has not been able to fill a diaper on her own yet, but the nurses have started giving her glycerine suppositories that help her to go. The doctors don’t really like giving suppositories at this point because babies can become dependent on them. However, when Abby isn’t able to go on her own, her belly fills up, she stops digesting, she won’t nurse or bottle feed, and she spits up.

Saturday, after the suppository, Abby reached a personal record by nursing 34 out of her 37 milliliter feeding! We were thrilled. Sunday afternoon I was set up for another great success. Instead it was the worst feeding session ever.

Dan had to stay outside with Lydia because she was very tired and more than just a little too loud to be brought in with us. Now, usually, Dan takes care of getting Abby out of her crib, unhooking her wires, weighing her, plugging her back in, and handing her to me. This makes it very easy for Abby and I to get comfortable, and it’s efficient so we’re not wasting Abby’s limited awake time. Without Dan’s help I was on my own to do everything (for the first time) and it didn’t go nearly as smoothly. By the time I was finally situated and ready to feed Abby, the new neighbor baby next to us started crying. I think that distracted Abby a little more. I was flustered and she was flustered and ended up doing nothing, even though I’m sure she was hungry. Then the nurse gravity fed her too quickly and she had a couple massive spit up episodes all over me.

Sunday night Dan had a terrible headache and was stressed out and tired, but he graciously came with me so I wouldn’t have a repeat of the afternoon feed. Abby started off well, but spit it all up. We reweighed her to find that, sure enough, the weights were the same before and after. She tried again and took in 12.

Today Abby is being switched from HMF (human milk fortifier) to a concentrated liquid fortifier. Dan and I have been concerned that the cows-milk based formula may be contributing to some of Abby’s problems and don’t know if this will cause things to improve, stay the same, or get worse. We are hoping to talk to a doctor at some point about the possibility of taking Abby off of the fortifier or fortifying some other way, but we’ll wait to see how she does on this new one.

It was just last Wednesday that the doctor said she’ll probably be home in 2 or maybe 3 weeks. Today the doctor (a new one) said, “Well, it sure would be nice if she could make it home for Thanksgiving, but…we’ll see.” It’s amazing how quickly things can change.

Praise the Lord
We are thanking God for:
-Abby’s occasional nursing success
-continued weight gain
-that Abby has finally started bottles

Please Pray:
-that Abby will not become suppository dependent
-that spit up will not continue to be a problem, and that we would know if there’s something we can do to help her out
-that Abby will get back to nursing well
-that Abby will start succeeding more with bottles
-that we will be able to trust God and anchor our emotions and attitudes to Him, not being so easily elated or devestated by Abby’s success or failure

MI Taylor Family

We live in Michigan.

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