Rexy Boy

Just when I start to feel like we have a routine going and things are looking up, my children remind me that they don't like plans and "typical" experiences. Then I come here and write about it because somehow it helps me sort it all out in my head. It's therapeutic for me.

Sweet Rexy Boy has only drank 9 oz today. He usually drinks 18-20 oz in a day. This is also the first week that I haven't religiously tracked each baby's intake (I thought we were past that). Anyway he had his first vision therapy appointment on Tuesday and then regular occupational therapy on Wednesday. Both therapists asked me how feeding was going, I told them pretty well but that Rex had been a little more tricky to feed. And then today, he hasn't taken hardly anything and it has taken a lot of coaxing just to get him to drink that much. I've been on the phone with his OT and pediatrician. My sweet friend who is a NICU nurse came over to feed him tonight too. It is seriously like back to square one with him, I don't know what's going on.

With any of these things that come up it's easy to think that maybe it's my fault because I just got too relaxed about things. Too relaxed about neck stretches, to relaxed about hand sanitizing, too relaxed about feeding. My friend who is a NICU nurse said that she thinks he is at high risk for developing an oral aversion and I agree, he really isn't super skilled when it comes to eating. But that could also be because he has extensive neurological damage. Suck, swallow, breathe is hard, and the poor boy is hungry!

On top of that the vision therapist on Tuesday told me that she thought he was having a seizure. So I've been watching him like a hawk to see if that truly is happening. Right now Charlie and I both think that Rex just has a very overactive startle response and that he has some spasticity in his muscles from the brain damage. It is naive to think that he won't have any lasting effects from his brain bleed (although we hope and pray for this everyday). It is just part of who he is and my job right now is to piece together all the observations and opinions of different specialists and doctors to ensure he gets what he needs, and sometimes I feel like I do a crappy job of that. Not necessarily a crappy job (I don't want this to come across as a sob fest and I want you to all feel sorry for me), but I get comfortable in my job and then things slip under my radar. In the NICU it was like every little thing that each baby did was analyzed to the max and talked over until we had exhausted every possibility and consulted the specialists. And now that we are all home I felt comfortable not overanalyzing everything and living a little bit of a normal life. But this isn't a normal life with our baby Rexy, and I've got to be a little crazy (and over analyze things) to be his mama. I love being his mama.