Abby Update: 12 Weeks Old

Posted on December 4, 2013 by justeeni

Weight: 5 pounds, 11 ounces

Well, as you all know, Abby is now home at last. After so many days in the NICU (82 to be exact) and updates all along the way, it is only proper that I share how the last days in the hospital turned out.

Lydia did turn out to be sick and continued throwing up until Sunday morning. Since she wasn’t allowed to see Abby, Dan stayed home with her and I spent Thursday through Saturday in the NICU. Within 24 hours of surgery, Abby was eating well and keeping everything down. It must have been pretty comical to anyone watching us feed her after so many weeks of constant spit up, because Dan and I continued to “brace ourselves” at each feeding, but now everything stayed in!

Our rough transition to the UofM NICU also changed on Thursday, right around the time we started giving our nurses chocolate. 😛 I got to be with Abby for every single feeding from immediately following surgery up until late Saturday night. Our nurse played advocate for us and talked to the surgery team to find out details about how soon Abby could come home. By Friday afternoon they were all saying it would probably be Saturday morning, and we were thrilled.

On Saturday I waited and waited for the final verdict, but the team didn’t show up. After two nights away from Dan and Lydia, I was more than ready to go home and sleep in my own bed and have Abby right there with us. We were sorely disappointed around noon when the doctors came in and said, “She looks great. We’ll weight her tomorrow and if she gains well she can go home.” I know, it was just one more day, but our hopes were up and we were (like I said) more than ready.

However, the day passed (although slowly) and I went home Saturday night to snuggle Lydia and get a little more sleep. Sleeping with a baby in the NICU means only getting a few hours, but sleeping at home didn’t turn out to be much better because Lydia was sick and kept us up during the night.

Sunday morning finally came and we got the call from the NICU telling us that Abby could come home at last. But Lydia had just thrown up and we couldn’t bring her in. For 11 1/2 weeks I had dreamed about that day when Dan and I would bring Abby home, but it looked like one of us would have to go while the other stayed with Lydia. As it was a Sunday and Lydia was sick, we just didn’t think it would be right to ask someone to watch her.

I was sitting on the couch, trying not to mope, when I started praying. I remember specifically praying, “God, I know this is pretty much impossible, but could You have someone call and ask if they can watch Lydia for us?”. I went on praying for my own attitude and preparing to stay home while Dan went to get Abby. A few minutes later, Dan’s brother Bob called and asked if we would like him and his wife to come over and watch Lydia. It was the only time anyone has ever called offering to come right over and watch Lydia. Out of our entire NICU experience, this was possibly the most obvious direct answer to prayer, from my perspective at least.

Dan and I went and picked up Abby. On our way out we were about to have our nurse take a picture of the three of us when the surgeon who “fixed” Abby’s pylorus and hernia jumped in between us:

By noon, Abby was home and Lydia hasn’t thrown up since.

We enjoyed an afternoon visiting with Bob and Leslie and began our adjustment to having a “newborn” baby at home. All day Abby refused to be put down. We enjoyed holding her but were a little leery of how the night would go. But, as it turned out, Abby knew when it was time for bed because at night she willingly slept in her bassinet.

The first few days have been a little crazy. Our house was a mess from my weekend away and Dan’s weekend taking care of a sick toddler. We were already sleep-deprived. And we had to figure out our feeding routine with Abby. Monday we were out all day at doctor appointments. But by Tuesday we were starting to settle in and even enjoyed a surprise visit from Dan’s dad.

And so, our second NICU journey has come to an end. No, it did not go by fast. No, it was not “over before we knew it”. But, yes, God carried us through. Yes, Abby did come home safe and healthy. And, yes, it is unspeakably better having a baby at home than in the NICU, even with the night time feedings!

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: 11 Weeks Old

Posted on November 27, 2013 by justeeni

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

Posted on November 25, 2013 by justeeni

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

Posted on November 22, 2013 by justeeni

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: 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

MI Taylor Family

We live in Michigan.

Tag Archives: Pyloric stenosis