September 17

My sweet baby. Every time we get something major taken care of and behind us, something else pops up. I feel like it will never end.

Yesterday we went to TCH for an MRI--here you are after getting your IV in your little hospital gown. Such a strong, brave girl. I had no idea an MRI would be such an ordeal! It was like a surgery, without the cut. We went through the same process including giving you an LMA. Usually they wouldn't protect your airway with intubation, but since you are a chronic vomiter, extra measures had to be taken. And with the LMA, they had to anesthetize you deeper than would usually be required. We spent a little time in recovery and then headed home. Yesterday evening you just wanted to be held, and had such a hoarse little cry and cough.

Tonight, a little before 10:00, Daddy and I were about to go to bed when his phone rang. We checked the voicemail and found a couple missed calls from Dr. Louis. I called her right back, knowing it couldn't be a good sign that she was calling so late. Sure enough, the MRI did not give great results. I was told the pictures showed fluid on the brain--when she got the results this afternoon, she was thinking she might have to call us to come to the ER for an emergency surgery to place a shunt. But after talking to a neurosurgeon who reviewed your test results, Dr. Louis said we have time to figure out exactly what is happening.

I did some research based on what she told me, and I think what you have would be called hydrocephalus ex-vacuo. Basically there is extra fluid in the ventricles of the brain, which has potential to put too much pressure on the brain. Usually this is the result of brain tissue loss, however Dr. Louis thinks maybe there was just never brain tissue there to begin with. I am unsure, because at a few days old we had an MRI and there was no mention of too much fluid back then. Tomorrow I have to order those test results so that we can compare.

The good news is that the fluid is symmetrical on both sides of the brain--this is why the neurosurgeon thinks we may not need a surgery. He said that if the pressure was too great, your head would be very large. While your head isn't super big, it is the only thing that has grown on somewhat of a normal curve. You are well under third percentile for height and weight--there aren't even stats for where you fall. But you are in the fourth percentile for head circumference. And even though your 0-3 mo clothes still fit your body, you can no longer wear several outfits because your head doesn't fit through the neck hole. Add to this the fact that MICROcephaly (meaning small head) is the norm for SLOS kids, I am concerned.

Concerned is an understatement. I am just so sad tonight. I was optimistic until I turned off the lamp to go to sleep--things always seem bleaker in the dark. That's when I decided to get out of bed, look up some medical info, and write to you. A little while ago you started fussing--usually I would never take you out of bed once you go down, but tonight, I just needed to hold you for awhile. Snuggling with my precious one always makes me feel better.

I would love to get good news back on theses sorts of tests more often. Rarely, if ever, has something come back with no abnormalities, and no concerns. It is exhausting and frustrating and my heart hurts. The thought of brain surgery scares me like you wouldn't believe--I don't even want to imagine what I would do if something went wrong. And if we find that surgery is necessary, the timing is much less than ideal. I need you to be at your best so that you can help me take care of your little brother when he gets here!

Even though I am sitting here with red, puffy eyes and tear-stained cheeks, I know that God has always given us the strength to cope with these tough situations. And so far, we have all come out better for the trials we went through. I know this one won't be any different. Sometimes I just wish He didn't want us to be so strong.