I'm sure you're all dying to know what happened at our appointments on Friday. I'm so sorry to keep you waiting but all the information has liquefied my brain, and then our PA parents were visiting and there was just no time to update....and on and on with my sad excuses :)
I'll start at the very beginning because it's a very good place to start.
Endocrinology: Found in the orthopedic department in case you were wondering. They had nothing new to tell us. They had not looked at any x-rays. They do not want to see us again until DECEMBER......hmmm sounds like some other endo dude I know. Anyways, since by the naked eye Amber's skeleton is only "messed up" on the top half they were not so excited. They did get blood work to check her vitamin D levels and said if anything interesting comes back from the blood work or the genetic testing then they'll see us sooner. Oh and they'd like us to see their orthopedic surgeon for a consult on her chest, maybe some other parts.
Pulmonary: Was a much better visit than I had expected. This is what liquefied my brain. All of Amber's breathing problems are due to her hernia and odd chest shape because of this prolonged use of oxygen is actually a bad thing. She will become dependent on the oxygen and will not take deep the breaths that are needed to help develop her lungs. So he wants to start weaning her off of the oxygen. If she is weaned off of the oxygen, due to her anatomical problems she will not get enough oxygen to help her overall development. So really its a lose lose situation. The first step is to get her hernia fixed. Then she'll have to go in for an Infant Pulmonary Function Test, this will tell them how well her lungs actually work. I'm not really ready to think about that test yet so I'll explain it when she's closer to having it done. Depending on the outcome of that test and some other blood tests they did we'll begin to discuss option to better Amber's breathing. They did do an oxygen challenge while we were in there, meaning they tried her on a lower level of oxygen every 20 minutes until she was on room air. She did a lot better than we had all expected so he told us to try her on a lower level of oxygen all weekend. It didn't really work because at home it's muggy and she still having a lot of breathing difficulties when she is in her car seat and eating. I'll be calling them tomorrow to discuss how she did, possibly the blood test results and see where we're going in the mean time. Oh she will also have a sleep and probably a swallow study after the hernia operation as well. I'm sure I'm missing other things but I'll remember and explain it better when things are happening.
Nutritionist: This was a surprise. The pulmonary specialist is also a neonatologist so he's very into the over all development of Amber and wanted us to meet with his nutritionist. They also pushed for us to see her because she has not gained a very good amount (for her) the last couple of visits. She was very nice. She still wants me to nurse as much as possible and add some formula to any bottles I pump. She also gave me "recipes" to get extra calories into the one formula bottle Amber gets and her cereal, fruits and vegetables. It makes feeding a little more stressful right now and it will definitely take some time for Amber and I to get used to. We'll see the nutritionist again in July. I'm not sure how I feel about this I don't think her bones or her muscles really need the extra weight.
Hernia: I finally got my call! It was rather awkward because I was in the same building as the surgeon and it probably would have been easier to just talk in person as I was trying to check out of pulmonary at the same time (thankfully my mom was with me!). He finally got the x-rays and agrees that her hernia definitely needs to be fixed and is the reason she is still having difficulties without the oxygen. He needs to go over her x-rays with his radiologist, discuss things with his anesthesiologist and should be calling me tomorrow to schedule either a consult or a surgery date. Amber needs to be over her respiratory infection for 2 weeks before they will do the surgery so they probably won't do it for another week or so. I'm really fine with this news. I think having the surgery now will really benefit her. When they mentioned the surgery before she did not have any complications from the hernia so I was really wary of the whole ordeal. I'm really hoping that once this is fixed she will be able to breath better, not be constipated, eat better and sleep better, so just improve things over all!
And then we finally ate and went home!
It was quite the day and we've been going non stop since!
But we had a very fun and lovely weekend, it was so nice to see our family again!
Now to bed!!