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!

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