Sarah is scheduled to get a helmet on Thursday. After a few weeks of complicated logistics, we were very excited to finally get that date nailed down. The sooner it is done, the more good it can do.
Last week some of the hardware from Sarah's most recent surgery had come loose. We saw a few little pointy bits poking out from her head. So, we called her plastic surgeon and her neurosurgeon.
On Friday she saw her plastic surgeon. From his perspective, she is good to go.
The neurosurgeon was concerned about pressure. The neurosurgeon has always been concerned about pressure. Between her larger than average brain and extra fluid, there has always been a question of how much pressure there is, and how much is too much. He ordered regular CT scans to monitor changes, but especially pressure. Today we heard what we have been hoping for months not to hear: Sarah needs a shunt.
It is not the end of the world. It is just another thing with another set of complications and issues.
A shunt is a tube that drains excess fluid. It drains out of her head and into somewhere else in the body. The internal design protects Sarah from infection. It is relatively simple. There are complications. They fail pretty often. I forget the exact numbers, but something like a quarter of them fail in the first year, and a quarter of the remaining fail in the second year. A new set of complications and issues.
This also means that the helmet is off the table, at least for now. I do not know whether we will revisit the idea later. The older she gets, the less good a helmet can do. I am very disappointed. Obviously, protecting her brain trumps other concerns, even when the other concerns are too many surgeries. It is hard to argue.
I was at a family party over the weekend and granddad looked at Sarah and asked if her forehead was tighter. I did not even hesitate before saying no. As it turns out, he was right. Her head circumference has grown between three and four centimeters in the past three weeks. That is pretty dramatic. Not dramatic enough for someone who looks at her every day, apparently.
The screws could also be a clue that there is too much pressure. It is possible that they were displaced by the internal pressure. One of the plates is pushing out as well. (Doctor said he had never seen that before. Do you want to talk about things a Momma can tire of hearing?)
The CT showed less room and thinner bone. Both red flags.
He said that a few months ago her had two or three reasons to get a shunt, and seven or eight reasons not to, and the opposite is true now.
Instead of a helmet, this Thursday Sarah will get a shunt.
For months and months, Josh and I have been afraid to schedule anything in the future more distant than a week. The summer looked wide open though. Sarah was not supposed to have another surgery until the fall. So, we went ahead and scheduled a trip. It had been confirmed about forty-eight hours before we got the news that Sarah needs a shunt and she needs it now. We are optimistically refusing to cancel, even though it was supposed to start this Saturday.
Things like this are discouraging. We were discouraged.
Last night we lay in bed chatting with little Sarah. Her huge eyes looking brightly up at us. She was not tired, though it was very, very late. She is a pretty quiet baby and she was quietly listening to us worry and try to sort out practical details. (Where do we take Lily? Should Josh take off work? What about the vacation days? Who should stay with Sarah in the hospital?) Sarah listened. Then she spoke.
We cheered and smiled and laughed and wondered if it was a fluke baby babble. Sarah put her hand on her forehead and signed, as she spoke again.
"Hi Da da."
She closed her mouth, and looked at me. "Mom" did not come out, but she formed her mouth correctly and tried, as she tapped her hand on her chin to sign Mom. Then she looked at the empty doorway and tapped the tip of her tongue at the front of the roof of her mouth twice. Lily. She was looking for Lily.
Amazing little wonder. To chase away any remaining doubt, when she saw Dad this morning, she looked right at him and asked, "Da da?"
We still have some practical considerations to work out, but we are far to delighted to be discouraged. Alleluia! God is good.