Yesterday was the four year anniversary of Amos' first brain surgery. During his birth, a brain hemmorage occured and as a result, he developed hydrocephalus. The blood clot did not resolve and so he had to have a temporary shunt placed to relieve the pressure. He was only 3 weeks old, 33 weeks gestation.
I haven't remembered this day in awhile. This year, for some reason, I've been really sentimental and deep in thought about it all.
On Sunday, as were up for communion at church, our elder was blessing Amos as he always does and looked him in the eye with this: "Amos, Jesus has suffered more than you ever will. He has suffered before you so that you could have peace and be comforted." I almost lost it right then and there. Two days before the fourth anniversary, these words are given to us. Amos did suffer but Christ was there with him, comforting his little hurting body in a way that we, as his parents, couldn't. He was with Amos during the surgery, while we waited down the hall. Such precious words to us.
Here's what I wrote on our caringbridge.org site as life was happening:
"August 10, 2006--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!
"...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 groggy 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."
It was difficult. He was so small, maybe 4 lbs. The docs didn't know what the longterm effects would be and no one knew what would happen after this in terms of his hydrocephalus.
The shunt eventually became clogged and three weeks later, he had to have a second surgery. Here's the post I did, remembering it a year later. This one was more involved and took him longer to recover from. But since then, we've had no issues with his shunt. And in November, after he was born, the blood clot resolved, which leads us to believe that he may be done with hydrocephalus.
Everytime I remember the uncertainty, I am floored at how smart and creative Amos is. At such an early age (15 months, I think), he was making up ways to communicate with us and was pretending. And even though some of his development has been slower than others, he is now doing so well and is on track with his peers.
I thought that everyday I would be measuring his head, making sure to know whether or not his shunt failed. But since his hair has grown in, I forget that he has a shunt, until I touch his head and feel that little bump. I can't believe we lived through that and have a normal life now.
Today I am praying for a little guy who was born last week at 32 weeks and for his mom who is recovering from an emergency csection. And a few weeks ago, I was praying for my friend who was in labor and who gave birth naturally, at home. I am thankful for both experiences. They didn't happen in vain or by accident. God continues to use them in my life to care for others. He is ministering through us and I need that to happen, so that healing can continue.
Even on the tough days, when I can't keep up with his curiosity and energy, I am thankful for Amos. I love him so much and am so thankful for his health.
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