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

Advertisements

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