Maggie has lost weight over the past five days. I kind of suspected it but a visit to the doctor yesterday confirmed it. I don't think I have ever been so stressed out in my life. It is really scary to see a child get dehydrated and refuse to eat, all the while smiling and cooing and acting like everything is just fine! A friend jokingly suggested I get her chocolate formula to make her eat. Little did she know that we are giving her vanilla flavored formula because that is the only thing that she will put in her mouth.
Anyways I sat with the doctor a long time yesterday and we discussed the issue. He thinks it is a combination of two things. First, her acid reflux is beyond terrible. Second, her sucking reflex has disappeared. Which sounds bad but really it happens to all babies. All babies are born with reflexes (you've heard of the Moro reflex where they throw their hands up in the air if they are startled). Well the sucking reflex is one God gives them so they don't starve to death I guess. But after a few month of learning what it means to be hungry and then how to satiate that hunger, they no longer need that reflex. Well some NICU babies who had feeding tubes never learned what it was like to be hungry because they had a feeding tube that automatically fed them every three hours no matter what.
Most NICU babies figure out how to eat when their reflex disappears and do fine but Maggie is having trouble. She wakes up hungry and takes about an ounce real fast but they she feels somewhat satisfied so stops eating and wants to smile, play, look around. She does not understand that she needs to feel completely full. The reflux also plays a big part in making her stop after an ounce, too, because the milk starts coming back up and she doesn't want it anymore. So we have two things going on that need to be addressed.
Her doctor told me that he treats this issue aggressively. He said he even conducted a study on this problem I am so thankful we are going to him. We will go to a GI doctor to see if there are other issues going on or how to more effectively treat the reflux (the highest dose of prevacid is doing nothing) and then do feeding therapy. (Seriously, how many types of therapy are there??) We will try several things but the last resort is a gtube.
On a positive note, the doctor was so impressed with Maggie's development. She was intently staring at him the entire appointment and following him around the room with her eyes. He said he was not worried about her brain development because her head measures normally and she is very alert. He told me that mentally challenged babies rarely have feeding problems because they never lose the sucking reflex. So I feel good that hopefully this is just a preemie issue and not a brain issue.
I just pray that I can have more patience with both of my children and also get on top of everything I need to right now. It is all just so overwhelming but today I am just going to focus on getting my outlook organized so I don't cross book appointments and also make lists of all the people I need to call and emails I need to send. I feel like I used to be an organized person but for some reason I just can't keep all of medicines, treatments, therapies, doctor appointments straight!