Abby Update: 79 Days Old

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: 11 Weeks Old

 photo climbing_zps3325764f.jpg

Gestation: 39 weeks, 4 days
Weight: 5 pounds, 3 ounces
Feedings: Continuous feeds of HMF fortified milk through a post-pyloric feeding tube on a pump running at 16 ml per hour

Things have been moving along (slowly) over the past couple of days. We are hoping to get a more definitive answer tonight as to whether Abby has pyloric stenosis or not.

Monday Abby got to eat her tiny amounts and she consistently spit them up.

Tuesday morning they decided to just keep feeding her a larger amount to see what she would do. After watching her spit up all of her feeds I wasn’t too eager to put more in her poor little tummy only to have her spit it back up, so I emphasized how much she had been spitting up and asked what the next step would be. They still decided to feed her 12 ml every three hours, but said that if she spit up, they would do an ultrasound.

Abby was allowed to nurse twice yesterday. Both times that she was allowed to nurse, she was so happy and eating great only to forcefully vomit everything back up while she was still eating (and only after a few minutes). At her 5 PM feeding I decided that, if the doctors didn’t make the decision, I was going to ask that she stop receiving food to her tummy until something else was figured out. I was grateful not to have to make that decision when they did an ultrasound that seemed to show (again) pyloric stenosis.

Then things got more interesting as I heard the doctors fighting discussing (with raised voices) Abby’s next step. Pediatric Surgery watched the ultrasound and remained unconvinced that Abby has pyloric stenosis. The neonatologist team watched the ultrasound and remained convinced that Abby does have pyloric stenosis.

This morning it was decided that Abby will get an upper gastrointestinal series to test (again) for pyloric stenosis. An upper GI is a test that Abby had done a couple of weeks ago at St. Joe’s. For the test Abby will be fed a mixture of barium and water and then x-rays will be taken of the mixture traveling down her stomach and through (or not through) her pylorus.

There was some disagreement about whether or not Abby’s post-pyloric (NJ) feeding tube has to come out for the test. Pediatric Surgery said yes, the neonatologists said no, and radiology said the tube could stay in. So Abby will hopefully be able to have that test done today. The results will determine our next course of action, that is, whether or not Abby will need surgery.

Tomorrow is Thanksgiving. Holidays are no fun when you’re in the hospital, not just because they are holidays spent in the hospital, but because the hospital is down to a skeleton crew. If you need any tests or procedures done, it’s hard to get them scheduled. This is also true during weekends. So, if Abby doesn’t get her upper GI (and possibly surgery) today, it may not happen until Monday. So, as you can imagine, Dan and I are pushing for things to get done as fast as possible.

Praise the Lord
We are thanking God for:
-a possible (fixable) diagnosis
-that Abby remembers how to nurse

Please Pray:
-that Abby can get her test and possible surgery before the weekend
-that the upper GI will be conclusive
-that we won’t have to repeat the upper GI without a feeding tube to appease Pediatric Surgery
-that Abby will only receive surgery if she truly needs it
-for patience for Dan and I…we really want Abby home!

Abby Update: 75 Days Old

 photo momholding_zpsa73edb54.jpg

Gestation: 39 weeks, 2 days
Weight: 5 pounds, 3 ounces
Feedings: Continuous feeds of HMF fortified milk through a post-pyloric feeding tube on a pump running at 16 ml per hour plus 6 ml by mouth every three hours

Well, the staff decided to wait until today to feed Abby anything by mouth or into her tummy, but we had a full weekend anyway.

Over the past week, Dan and I had noticed that Abby just wasn’t doing very well. She was sleepy all the time. She was moving backwards in her development. She used to be so bright-eyed and noticed everything. She would turn to the sound of Dan’s or my voice. She could look all around and track you as you moved over her from one side to the other. But all of that stopped and she was just sleepy all the time. Even when she was awake she would just stare off in one spot. She stopped sucking on her fingers. Then we noticed that her heart rate was continuing to increase from the low 100’s at rest to high 100’s and even low 200’s at rest.

So on Saturday as I was holding Abby, I was praying for her as I often do while holding her nowadays. Suddenly as I prayed a thought flashed across my mind: “iron”. For the past two months Abby has been receiving iron supplements to fight her anemia of prematurity. When she started getting rice cereal added to her feeds they cut out the iron because the rice cereal was fortified with iron. However, UofM took Abby off the rice cereal and never put her back on iron supplements. As I looked at Abby I started to notice how pale she looked and started thanking God for bringing this all to mind.

I went to find my nurse, but couldn’t, so I found a tech instead. “Is Abby getting any iron supplements?” I asked her, but she couldn’t figure out where to find that information in her charts. So she summoned a resident to come talk to me. A few minutes later the resident came in only to assure me that Abby was getting “the correct amount” of iron just from the HMF in her feeds. I was so surprised that I could only nod and thank her before doing my own research to find that, indeed Abby was getting way less iron than she had at St. Joe’s. In fact, Abby was receiving iron while on HMF at St. Joe’s.

I didn’t want to be annoying to the resident, so I asked our nurse if he could check her latest hematocrit level. Now, in the past Abby’s hematocrit had reached its lowest at around 7 weeks old and then started coming back up. Those who have followed Abby’s progress long enough may remember my saying that if it got as low as 23 Abby may have needed a transfusion. If it reached 20 she would definitely need a transfusion. Her numbers over the course of the past month were 27, 26.5, 24.5, and then back up to 28.3 (measured weekly). Abby’s hematocrit at UofM hadn’t been checked since she was admitted, and at that time it was 27.1. So I asked the nurse if it’s normal for it to decrease.

The nurse spent half an hour explaining to me that Abby is not anemic. She doesn’t need any more iron than she gets from my milk and the HMF. He told me that she had a good color to her skin and wasn’t showing any signs of anemia. I listened, asked lots of questions, and finally thanked him, still unconvinced.

When Dan came back from his walk with Lydia I relayed all of my thoughts, observations, and conversations to him. And he agreed. So when we went back to the hospital we asked to speak with the resident again. Again she came and assured us that Abby was getting sufficient iron. But because we were so persistent, she finally agreed to check her blood count the next morning.

On Sunday morning Abby’s hematocrit was down to 22.8 and she had already received orders to start taking a large does of iron daily. By Sunday night, we were already noticing improvements as Abby seemed more alert and bright-eyed once again.

Today Abby gets to have her first milk by mouth in over a week. The plan is to feed her 6 ml (a little over a teaspoon) once every three hours to see if she keeps it down or spits it up. If Abby tolerates the 6 ml, tomorrow we will increase her amount. If she spits it all up, tomorrow she will probably get another ultrasound to test for pyloric stenosis.

At 11 PM, Abby refused to nurse but took in 2 or 3 ml by bottle. Then she spit it all up. She didn’t seem to have any interest in eating at all, let alone nursing. So it’s really looking like she might be getting an ultrasound tomorrow.

Praise the Lord
-for showing me that Abby needed iron before she was in need of a transfusion
-that God is taking care of Abby especially when the doctors fail

Please Pray:
-that Abby will have a conclusive test for pyloric stenosis in the next couple of days
-that, despite the days she’s spent not eating, Abby would quickly “remember” how to eat and nurse
-that God would keep showing us what Abby needs that may otherwise be overlooked
-for Dan and I as we are still struggling with this transition to UofM

Abby Update: 72 Days Old

 photo listening_zps2411bc43.jpg

Gestation: 38 weeks, 6 days
Weight: 4 pounds, 14 ounces
Feedings: Continuous feeds of HMF fortified milk through a post-pyloric feeding tube on a pump running at 15 ml per hour

Dan and I have spent a lot of time over the past couple of days discussing our “theories” with the doctors as to what is causing or contributing to Abby’s issues. I won’t go into all the gruesome details here, but will instead share the decisions that have been made and the upcoming plans.

Last night at 6 PM, Abby started receiving milk that was fortified with HMF to 22 calories per ounce. Over the night and through today she had four small spit ups of the mucus-like liquid from her stomach. Today the doctors decided to increase Abby’s fortification to 24 cal, which will start at 6 PM tonight.

Since Abby still hadn’t had a dirty diaper, today she was given a suppository. Within minutes she had a very full, very stinky diaper.

If Abby “tolerates” the feeds tonight, the next step will be to pull her post-pyloric tube back up into her stomach. The anticipation is that she will start to spit up again and we will repeat the ultrasound to look for pyloric stenosis. However, it’s a little more difficult to schedule ultrasounds on weekends, because less people are working, so it may be Monday before the feeding tube is pulled back into Abby’s tummy. Either way, by the next blog post I should have some sort of results from Abby’s first attempt(s) at getting food directly to her tummy.

Praise the Lord
We are thanking God for:
-that Abby finally had a dirty diaper, even if it was with “help”
-as UofM still does routine “rounds” on weekends (St. Joe’s didn’t always), we’ll be able to stay up-to-date over the next couple of days on Abby’s progress

Please Pray:
-that Abby will continue to tolerate the HMF or that it would be clear if the HMF is causing (or contributing to) any problems
-wisdom and direction for this doctor, the new one who comes on next week, and the residents as they make decisions regarding Abby’s care
-that they will go ahead with Abby’s plan this weekend instead of making us all wait until Monday

Abby Update: 10 Weeks Old

 photo daddysnuggling_zpsdfe5887e.jpg

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

 photo looking_zps9f0556d0.jpg

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

 photo ambulance_zpseabc6563.jpg

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

Abby Update: 9 Weeks Old

 photo burping_zps445f81a2.jpg

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!

 photo openeyes_zpsd26094f5.jpg

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: 58 Days Old

 photo isolette_zps839b331d.jpg

Gestation: 36 weeks, 6 days
Weight: 4 pounds, 5 ounces
Feedings: 37 milliliters every 3 hours by gravity or bottle

If you’ve been paying close attention to Abby’s weight, you’ll see that she’s lost 7 ounces in the past 7 days. In the past couple of days she’s made more steps backward, which is always hard, but we got some answers too.

On Wednesday, I got a call from the NICU doctor. Now, in the six weeks Lydia was in the NICU and in the 8 weeks we’ve spent there with Abby, we’ve never gotten a call from the doctor before. He was calling to tell us that Abby was being taken to radiology for an upper gastrointestinal test to find out why she was losing so much weight. The test revealed that everything is normal, but the esophageal sphincter (that is, the valve at the top of Abby’s tummy) is wide open. Therefore, anything that goes down into her little tummy can come right back out without much trouble.

There’s not a lot that can be done to help with reflux. Abby has been taking Zantac, but it doesn’t seem to be doing much so they will be upping her dose today to see if it helps. Neonatologists differ about their use of antacids in preemies, but in this specific case, our doctor thought it was worth a try. In addition, Abby is being held upright for half an hour after a feeding. Today they also started to thicken her milk with rice cereal.

As Abby has been spitting up a lot and loosing weight, she has also started to drop her temperature. Yesterday morning we were running late to the hospital so I called our nurse to let her know we were still coming. After I let her know, she informed me (so we wouldn’t be surprised when we got there) that Abby’s temperature had dropped a lot so she was put back in the isolette. During our visit Abby was too exhausted to nurse and she only took 16 ml from a bottle.

Yesterday afternoon we got another call from the NICU (which we’ve learned is never good) informing us that Abby had failed to take in much milk by mouth so often that they had to put her feeding tube back in. Now she’s back to her old feeding routine: she eats as much as she wants by mouth and whatever she doesn’t take is put in through her tube. At our evening visit she nursed about 15 ml and got the rest through her tube.

Abby has been on a new formula for the past couple of days, and in that time she has failed to stool on her own. This is something Dan and I are watching out for, because every time she stops stooling, she stops digesting well, and then she stops eating as much. However, this time the doctor isn’t concerned how long it takes her to go as long as her tummy stays soft. We’ll wait to see if she can handle the fortifier this time.

The pediatric surgeon came by Wednesday afternoon to take a look at Abby’s hernia. He recommended the surgery be done before she comes home. However, he’s a busy surgeon and the surgery couldn’t be scheduled until at least halfway through next week. This is no longer a problem, because Abby is not going to be home that soon.

Finally, the good news is that Abby’s blood count was up to 28.3 this week (from 24.5). Now that it’s increasing, it should continue increasing until it reaches a “normal” level.

Throughout the time we’ve spent in the NICU, I’ve tried to include on our updates how the rest of us are doing. This time, it’s more difficult to put into words. We are so ready to be home with Abby. We’re tired and weary and longing for home and togetherness and to be one whole family. The past eight weeks, however quickly or slowly they may be going by for others, have dragged on and on for us. Unless you’ve spent an extended amount of time in the NICU with your own baby; unless you’ve seen her make so many tiny steps forward from the isolette to the open crib to bottles to being feeding tube free, only to hastily return to the isolette and get her tube back in; unless you’ve heard the doctor predict “home” in two or three weeks, only to hear three weeks later, “she won’t be going home for a while”; unless you’ve watched your tiny little blessing put on weight one ounce at a time, only to see her once chubby cheeks shrink back down, I don’t think you can completely understand what this specific situation feels like. And I’m sure all of the moms who read this can imagine the fears that temp to fill a Mommy’s mind as she watches her little one grow too tired to eat and too weak to keep herself warm.

We’ve had a hard, a very hard week. I’ve recently been dropping Dan off at work and driving home, then driving in to pick him up later. One day I decided to start putting on music, and I found that listening to worshipful songs was helping my attitude. This morning as I drove home an old song came on that resonated with our situation.

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can’t find You

As the thunder rolls
I barely hear Your whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

Praise the Lord
We are thanking God for:
-an increased blood count
-that we won’t have to come back to the hospital for surgery once Abby comes home

Please Pray:
-that Abby will gain weight, eat more, and keep her temperature up
-that Abby will be able to tolerate this new formula being used for fortifier
-that the attempts to fight Abby’s reflux (Zantac, upright holding, and rice thickener) will be successful
-for Mommy, Daddy, and Lydia, who are heartsick and wanting Abby to thrive and come home