This Family's Life: Two years ago on this day...

"No more leaky hose in your brain and no false starts."

That's a line from a Thom Yorke song, which is from the album that I listened to as I drove back and forth from the hospital to see Amos, two summers ago. Oddly enough, we needed the leaky hose for his brain and are glad that his start wasn't false, but either way, this line always would give me pause to sort of drink in the situation. At the end of the song, he sings, "He'll be ok." I've never known if that was God's way of reminding me that no matter what, he'll be ok, where ever he is or whatever happens. I guess God can use folks and their art, even if they aren't believers.

Two years ago, on this Thursday, Amos underwent his first brain surgery, to have a temporary shunt put in. During his early birth, blood vessels in his brain ruptured, causing a blood-clot that would block his spinal cord which prevented the cerebral spinal fluid from draining properly. In the two weeks leading up to this surgery, we would watch as Amos' head would grow a few centimeters each day, something that was abnormal and proved that he had hyrocephalus. The only treatment possible was to have a shunt placed, which would drain the fluid from his ventricles in the middle of his brain, to another location in his body, relieving the pressure. Needless to say, this whole affair quickly schooled us on the brain, its fuctions, etc.

Because Amos was so small, the shunt was temporary and we came to find out, would only last about 2 weeks. I remember that before this surgery, our pastor and his wife came to pray with us and I just couldn't understand how, despite our many prayers, that Amos was still going to have to go through this. I know that God heard us but I think that for whatever reason, it was his plan for Amos to go through this, for us to trust him with our child and to give him glory through this hard situation. Apparently, it was pretty rare for Amos to even have a brain bleed so severe, at the age that he was born, and it was pretty rare for it to develop into hydrocephalus, needing surgery. Sometimes I don't understand, but that's what faith is, believing and trusting without understanding and asking for comfort in the mean time.

Thankfully, Amos did well through the surgery and even to this day, since his second surgery, has not had one complication. We are thankful for each day with him, seeing it as a gift and not a right.

Here's the post I did on our caringbridge.org site. I have started putting together a blog about Amos' birth and time in the hospital but have not finished it yet.

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THURSDAY, AUGUST 10, 2006 10:21 PM, CDT
Here's a quick update from the last week.
Here we are, another week has passed and Amos has been born for another week. Oddly enough today, he was in surgery again, as he was when he was born. (Technically, it was me that was having surgery done, with him as a happy result, but we thought it was fitting!).
Amos had to have a procedure done today to relieve pressure in his brain, caused by hydrocephalus (water on the brain) which was caused by a blood clot that happened around the time he was born. What a roller coaster of a day it has been!
But let's rewind a week, as lots of things have happened and lots of progress was made. Last Saturday, Amos was up to full feed of breast milk and we got to fully remove his IV. That was very exciting! His nurse decided to try feeding him with a bottle, and lo and behold, he was a natural. So for most of his feeds since then, he's taken most or all of a bottle. In the last day or so, he seemed to be more tired out, probably due to the hydrocephalus, so we haven't tried the bottle as much. We have also experimented with him eating from me (Sarah) and he did pretty well, there too. It is so amazing to be able to hold him and feed him, things I could have taken for granted but now am thankful for. Nathan has done a great job at learning how to bottle feed, burp and change diapers. He's a great dad already!
Amos is also so active, vocal and expressive. We love holding him when he's awake, as he'll make faces at us and sort of talks to us. When he's asleep in our arms, you can tell he loves to be there.
Since last week, we had been on pins and needles, watching his head size grow, wondering if they'll do surgery, etc etc. The hospital that performs the surgery (Children's) and the neurosurgeons there had to have time and space to look at his cranial ultrasounds and then have time and space to bring him over to that hospital to do the surgery. So Wednesday morning, they were finally able to look at the ultrasound, decide he needed surgery, check their schedule and have him come over. We found out around noon that he was going to be transported that day at 2pm, with surgery in the afternoon on the following day (today). Needless to say, we were very relieved! We got to the UW hospital around 12:30 pm and helped to get him ready to be moved. As we left there, many of Amos' nurses and doctors came to say goodbye and wish us luck. Amos had made lots of friends and we felt so blessed to have been so cared for there.
As Amos got comfortable yesterday and last night, we got acquainted with Children's. It's like an amusement park hospital. Everything there is very whimsical. But we see very sick children around there, and it's tough sometimes. Amos has his own room, and got to be on a different bed, so he has been out in the open; better for being loved on! He's had wonderful nurses so far, and again, we feel so blessed. There are places for Nathan and I to stay overnight, if we want; I get to the food for free, as a nursing mom, and the parking is free! yippee!
His surgery took place today at 2:30pm. It lasted to about 4.We got to hold him for awhile before, and took lots of pre-surgery pictures. At this point, the surgeon decided to put in a temporary shunt in the top of his head so that the fluid could drain between his scalp and scull. This will help to relieve the pressure and to reduce the size of his head (which had become bigger). If he needs a permanent shunt (because the problem has not resolved itself) he will have surgery again at 2 or 3 months of age, to have a permanent shunt put in that has a tube that drains in his abdomen.
He made it through surgery and did very well. He was grogy as he came out of the sedation and still very sleepy when we left for the night. He's very comfortable, though, and even though he had lots of hook ups, (a breathing tube and I.V.) he is doing well. He has a big square bandage on his head to cover the incision, and his head is already smaller. I have to admit, as his mom, it was hard to see him after surgery and I couldn't stop holding his hand. We hope the breathing tube will be able to come out tomorrow, as Amos remembers how to breathe, and that he'll be back to real food in no time.
Please keep him in your thoughts and prayers. We are hoping that this procedure will help the hydrocephalus go away, with no other surgeries necessary. We also hope that there are no infections that come as a result of this procedure. Lastly, we hope that he recovers well and soon so that he can begin to make progress again, eating, breathing and putting on weight, all on his own.
Thank you for your continued support and thoughts. We feel blessed to have such a community of people caring for us!