A year ago Maggie was a few days from coming home from the NICU. She was taking every feed by mouth and doing great. We were so excited that life was going to start getting easier...what the heck happened?!!
One year later, Maggie is not taking anything by mouth. She is fed continuously 24 hours a day by a tube. She vomits half of what she eats and can't gain weight because of it. Everything is so interconnected : she's not ever going to take anything by mouth if she's not hungry; and she's not going to be hungry if she's fed continuously all day long; and she's not going to stop being fed 24 hours/day until her reflux gets under control and starts gaining weight; but she's never going to gain weight until she stops spitting up all of the time, and the only method for helping that is feeding her 24/hours a day. Really it's maddening.
Who would have thought that reflux could be so life-altering? I mean, ML had "reflux," but this is a whole different ballgame. I mean, it is so hard to sleep at night because I either changing her wet clothes and sheets or listening to her cough/throw up on the baby monitoring, wondering if I should go change her or should 'just check to make sure she's not choking to death on her own stomach contents."
It's awful, really. And I have been so focused on the torticollis that I have kind of put the feeding issues on the back burner, which is really bad. I think about how hard I worked to prevent her from being a baby that is dependent on their feeding tube. The hours I spent feeding her and working were for nothing, though. To think that just four months ago she was taking about 60% of her feeds through her bottle and we were just getting the g-tube to "bridge the gap." And it has been a disaster ever since because she can't keep anything down, and is still struggling to put on an ounce a week. Sometimes I really do just want to bang my head against the wall...
Having said all of that (sorry it feels good to vent), I am praying that my attitude will be a little softer and sweeter this year about all of Maggie's problems. That I can be joyful and thankful in all circumstances, because I know it is Gods will for me. That I can remember how far Maggie has come in a year, instead of the other way around. For example, she is now pointing at everything. and saying things like mama and dada. She can sit and stand with assistance. She is happy, despite her obvious discomfort. And he is breathing and her lungs are healthy. And, most importantly, she is here and alive, praise the Lord.
This week is a huge week for Maggie. We are seeing a neurologist, neurosurgeon, and a second cranial facial plastic surgeon. We are also checking in with the pulmonologist and dietician, too. I am praying that we will get some concrete answers about her torticollis that will help us make the best decision about her treatment plan.