Funny story - Maggie's feeding pump runs constantly at 39 ml/hour (which is a little more than an ounce an hour). Last night in a slumber I accidentally set the pump to 391 ml/hour! How in the world I have no idea! I woke up so confused an hour later when the alarm ran to tell me the pump was already empty again. Poor little thing! I know that was quite a shock to her system to be pumped up like balloon full of milk like that!
We did go back to Scottish Rite last week and the doctor willingly acknowledged he doesn't know why Maggie's neck is so bad. He said he'd like to take things slow because of that and assured me that scoliosis would not be a problem for her. He promised me that Maggie would not graduate from high school with her neck like that. Not sure if that is good enough, I told him, but if that's the only option then that's what we'll do. And after some pushing from me, he agreed to do a brace that Maggie's OT had suggested. So we spent five hours at Scottish Rite meeting with him, the PT, getting pictures taken and being casted for a brace. Fun, fun.
Then two days later we went to a craniofacial plastic surgeon. After looking at her medical records, he simply said that it makes total sense to him that her neck was not able to stretch properly in the womb and that is why it is so bad. (What I've been saying all along!). He said he could do surgery cut the muscle (to lengthen it) and then could put on a soft collar for 6 months and hopefully that would help her. He said it would be much less traumatic than the brace Scottish Rite is making and he said he would be very worried about scoliosis. Hmm...what am I supposed to think or do when two of supposedly the best doctors in Dallas totally disagree in their treatment plans?
We were supposed to go to the neurosurgeon yesterday but the surgeon had an emergency surgery and had to cancel, so we postponed until the 31st. I am anxious to get his thoughts on her neck, her spinal cord, and to see if there are any other missing pieces we have not thought about yet. Once we talk to him, we can get a game plan going for Maggie's treatment.
On a different note, we did go for a weight check this week and I was so frustrated to hear that she hasn't gained any weight in the past two weeks - what?!! How can that be?? She is hooked up to the pump constantly and now I am even taking out the backpack pump and attach it to the back of her stroller when we go out (I'm sure people will give us strange looks!). But I mentioned to the dietician that Maggie is now sitting up for almost 30 seconds by herself! And she is standing and holding on to things with a little help (thanks to her awesome Occupational Therapist). Finally she is starting to do some more physical things, but that of course means she is burning more calories, which explains why she is not gaining weight. I was hoping to start weaning her off of the 24 hour feeds now that her stomach has gotten used to 39 ml/hour. But since we have to increase her feeds to 45 ml/hour, the continuous will have to continue. G-tube babies are a fine science to figure out!
Today we are going to get her second RSV shot - called Synagis. Preemies/CLD babies get this antibodies shot once a month during cold/flu season and boy am I thankful for them. It is not a vaccine so it won't prevent her from getting RSV, but if she does get RSV hopefully it won't be bad enough that she would have to be hospitalized or put on a ventilator. I panicked on Tuesday - exactly 30 days after her last shot-because the clinic called and said they didn't receive her shot from the manufacturer. So the past two days I have been so paranoid about taking Maggie out and "Purell-ing" everyone that gets near her! But we're off this morning to get it and I know Maggie is not going to be happy. Usually she doesn't mind shots but this thing is huge!
Sorry for all the boring medical updates - I do thank you all for praying. I have to say, now that Maggie's reflux is under control (which will probably start back up now that we are increasing her feeds!) she is much more delightful. She still hates the car and screams constantly in it, and she is still frustrated because she can't crawl or walk and really wants to. But other than that, she is hysterically funny with her huge four new front teeth and giggles with joy and lifts up her arms every time I walk near her...