The Baby Advocate -- choosing the right people for the job

Thomas took Gabriel to see a different pediatrician that had a speciality in pulmonology to look into the persistent on-and-off wheeze we noticed. After an allergy test, and a chest x-ray, the doctor determined that Gabriel has "perhiliar peribronchial thickening" which basically means that there is inflammation where the windpipe splits off into the separate lungs, and there is also some associated congestion. It wasn't something that would have been explained by his cough the past week. So, we are in the process of getting all the necessary equipment to nebulize a lung medication once a day to help reduce the inflammation and hopefully, the wheezing. The doctor also noticed that Gabriel's chest/ribcage is a little wider than usual and his lungs are a little hyperinflated meaning that he isn't necessarily able to push all the air out on an exhale. In my personal, non-medical opinion, I'm guessing that we are seeing the effects of ventilator damage. However, the doctor also said that by the time he's a kid running around, he should have no issues. So, it isn't serious, it's just one more thing to deal with right now.

The upside of this appointment is that we will be switching to this pediatrician as Gabriel's primary care doctor. He seems to be knowledgeable about preemies and their uniqueness and doesn't necessarily think of them just as a smaller baby that needs to do a little catching up. He is also able and willing to answer questions. We feel like our current pediatrician doesn't have a good idea of how to handle any preemie questions we have and doesn't like to share an opinion one way or another. He's more of a, "if you want to try that, it's fine" kind of guy, but we need a little more dialogue and direction than that. The new doctor is also a doctor of osteopathy, meaning that he's a full MD, but can also draw on chiropractic hands-on care experience as well as general medicine.

I also called the GI doctor about Gabriel's increasing problem with constipation. Since he is on full formula, it has gotten a lot worse, even with the medication. It seems obvious to me that the formula is the issue, since the more formula we added to his diet the worse it got. First thing they asked is if I'm giving him any juice or extra water. I said no, we didn't know that we could. This is a little frustrating for me since they seem to have focused so much on shoving caloric formula into the baby that they failed to mention that it was as good idea to put other things into him as well. This is my first baby and he takes nothing orally. I need a little help here! Anyway, they also said that any baby that is having a lot of trouble pooping on his own is a real concern and they want to do a barium enema to check for a not-super-common disease called Hirschsprung's Disease where part (or all) of the colon may have had no nerve development and therefore the baby doesn't have the peristaltic waves to push food through the large intestine and out.

Here's where I get a little upset. In my head, it's easy: more formula = constipation. He has never had bowel issues until we started giving formula, and formula is famous for constipating babies. This disease would have been evident somewhere along the way in his hospital stay, I'm sure, since it would have been congenital. And the easy solution is to try giving more juice/water in addition to his diet, especially prune juice, before jumping to a diagnosis that would require yet another radiographic study, yet they never mentioned trying it in any of our appointments. It took calling a nurse to get the recommendation; the doctor just prescribed medication and sent us to radiography. I have found that we have to be super-advocates for this baby given that he has several doctors who don't necessarily talk to each other, and it seems they all want to do x-ray after x-ray. It's like being a high school student with homework from six different classes where every teacher is convinced their assignment is the most important and you should spend several hours per night on their subject. It's overwhelming. If just one doctor wanted to do the occasional x-ray, that would be fine, but several doctors all ordering them for different things adds up very quickly. I find more direction from preemie parent internet groups than I do from doctor visits, much of the time. Oh, and the prune juice did the trick this morning.

Okay, rant mostly over. One more thing to push: from talking to other preemie parents, I really want to try to get Gabriel on a blenderized diet -- i.e. regular food liquified so it can go through the tube. Getting his tummy used to real food would be a good thing, and would likely help his reflux quite a bit. If his GI system is used to real food, that's half the battle. The other half is getting him to feed himself, of course. So, I hope that I can be assertive enough to really push this at our visit on Monday.