Friday, April 27, 2012
We are hoping Sarah has a virus. That is not a sentence I ever thought I'd think, let alone say. Sarah is sick. She was not able to keep anything down all day, not even pedialyte. She is sleeping relatively peacefully now, and I am taking advantage of her sleep and her feeding tube to sneak in a few milliliters of pedialyte at a time. There is a nasty virus going around. A lot of Sarah's cousins, Aunts and Uncles have gotten sick. We are hoping that is what Sarah has. We are hoping because the alternative is worse. When we last talked to her Neurosurgeon we set up the neurosurgery to happen before the cleft palate repair and before her fingers are separated. This surgery had to be first because it can not wait. The surgery has to be done before the pressure on her brain reaches a point where it can cause damage. According to the images, we were not at that point but we were close enough to stop waiting and schedule the surgery. We were told to watch for neurological symptoms, which would be unexpected but not out of the realm of possibility. Watch for unexplained vomiting and lethargy. We called the neurosurgeon, in case he wanted us to come in early. He said if she gets worse, not better go to the ER. We called her pediatrician, who (assuming it is a virus) wanted us to keep her hydrated. Switch to Pedialyte, since she cannot keep the milk down. So, here I sit at 2:30 a.m. hoping that my daughter has a virus while a give her a "sip" of pedialyte every ten minutes or so. She has been keeping it down since 10 p.m., when she fell asleep and I started giving tiny sips instead of giving 1 1/2 oz every two hours. Josh will take his shift soon. Please pray that this is a virus and that she heals quickly. Also, I am hoping that we do not have to postpone surgery. Obviously, she has to be healthy to get surgery, but this surgery is on a timeline to protect her. We are calm, if tired. And we are confident, as ever, that God is taking care of our Sarah.
Tuesday, April 24, 2012
Little Sarah is not so little anymore! She is seven months old and she is beautiful. We are so proud of our wonderful little girl. Sarah has been making all kinds of sounds. She watches when people around her talk and she tries to mimic. She especially seems to enjoy watching people singing. From afar, music delights her as it does most children. But if you are holding her and you sing, she watches this curiosity. How do we do that? I enjoy her curiosity. She reaches for things and rolls every which way to see things. She scoots and rolls. She is not very mobile yet, but she is close enough that we do not leave her alone on a bed or couch. She bats at her toys. She sings and chats and yells, sometimes. In general, though, she is a pretty quiet baby. And she is a stoic. She rarely complains, even when you know something is wrong. (When she does complain, you had better fix it quickly though. She is not patient.) She loves to be outside, as long as it is not too cold or too bright. Our beautiful, wonderful, precious little girl is facing another major surgery. On May 2nd, she will go in for another neurosurgery. The primary goal of the surgery is to relieve pressure on the brain. This time they will be doing reconstruction. In the first surgery, she was too young to do any reconstruction. They took out some bone. Her brain, relieved of pressure, rounded the shape of her head. This time, they will be doing reconstructive surgery as well. This is a major surgery. As before, we are very happy with her doctors. She is in very skilled hands which belong to very kind men. Her plastic surgeon, in particular, was very excited about the outcome of this surgery. We are too. They will be using a ventricular drain to drain some of the excess fluid. They are still hoping to avoid a shunt. The ventricular drain drains out of the body and with it they can more closely monitor the fluid and the pressure. So, less fluid means smaller. (I do not really know how much.) They will widen where her head appears pinched, above her temples. They aim to allow the brain room to grow outward, as opposed to only upward. This relief mean her head will be rounder. She has very large "soft spots." All babies have soft spots, where the plates do not touch yet. Hers are much larger. Much. They will begin to address this as well. Please pray with us that she stays healthy between now and her surgery. And, of course, for a successful surgery. Thank you so much for you prayers for our little miracle. She amazes and amuses everyone who knows her.