H is for Hydrocephalus, H is for Hope, H is for Happiness
H is my lil' guy's nick name. I often call him Hchy, but it doesn't type out that well. He is our ticket to happiness. If we made it through the pain we went through with him, our family will make it through anything. That little man is the stitching in our lives.
H was diagnosed with Hydrocephalus at just over 2 months old. Looking back at the first photos of him I can see that it was there long before they noticed it. He had a rough start initially and we went through a lot to get us to where we are today. When I see young babies often feel robbed of my time with H. I never saw that first smile like I should have, for almost two weeks of his life I hardly held him, and in the beginning those doctors took my hope away.
Hydro can go either way. Sometimes it causes a serious amount of damage before it is remedied. Some kids never really bounce back from it. I've read stories of kids in similar situations to H who at 13 cannot hold a fork and feed themselves, others who did not walk until 4, and some who still do not speak. For a while there, I thought we would become one of those stories.
It was a long road coming to get to this point. It was quite sometime until he rolled over and became even the tiniest bit mobile. H didn't crawl on his knees until about a month ago, but once he did, you'd never know there was a thing ever wrong with him. Months of weekly occupational therapy and daily therapy with me brought us to know the cruising, crawling little guy I just adore.
He is 14 months old now and is crawling like a champ. His first word? Kiki cat. I even expect to see some steps coming up in the next months. He already likes to balance on the bed. The therapist and I believe that his well being is due to immediate intervention (the loss of my job) and the state funded therapy program assigned to us. My ability to stay home during these initial months were crucial to H's recovery. During this time I was able to nurture and love him through countless hours that I wouldn't trade even for a free ticket to grad school.
I can remember the fears that my husband and I had when the whole deal came down, now I just hope I have enough clean diapers to make it through the day. And the urbilly? He's already building him a motorcycle.
UPDATE November 2010
H is going to be 18 months in a few weeks! I can't believe we made it this far! It's almost like nothing happened, almost. He had his OT evaluation recently and passed with flying colors! He's never failed to amaze the state ladies! They always tell me how good he's doing. He's quite mobile now and walks everywhere he goes. I am happy to report he can eat a whole bowl of cereal with a spoon and says a number of words, but primarily "wow." He's so amazing. I'll tell ya, ladies, I just can't squeeze that little guy enough.
If you'd like to know more...
Below you will find an excerpt from an online diary that I kept during some of H's recovery.
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September 2009
H is a sweet little guy. At 4 1/2 months old he is our first child and the light of our lives. Born three weeks early, our little guy had a rough start. I was induced and pumped full of magnesium sulfate to control my high blood pressure and to prevent a stroke. H was adversely affected by the magnesium and spent two days in the NICU. The day he was brought to my room we learned he had jaundice and would need a few days of light therapy in the hospital and then a bili-blanket at home. We thought were over the initial hurdle of early problems. All seemed fine for a while. Then....
H was diagnosed with hydrocephalus on July 31 at just 10 weeks old.
H underwent surgery to have a shunt placed to help control the pressure in his head. The surgery went fine and we were sent home with in a day or two. The day after our first check up 3 weeks after surgery the signs of infection began to appear. His temperature spiked to 102+. Within the day he was admitted to the hospital and our true ordeal began.
In the case of any infection, the shunt must be removed and a regimen of antibiotics must begin. A external shunt known as a EVD was put in place of the shunt which drain the infected fluid to a bag. If that wasn't bad enough, he began to leak CSF from the EVD incision. This all happened over a week-end and was very traumatic. I'm sure you all know the skeleton staff at the hospital over the weekend.
He had such low pressure and lost so much fluid that his soft spot sunk to the point of hollowness. It was horrific. (He also lost his IV and we had to wait 2 days to get a pic line done. they wouldn't let me feed him because of surgery...grrr all too frustrating) To remedy this the EVD was removed (two days later, we had to wait til Monday and then got constantly bumped in surgery) in another surgery and a reservoir shunt was put in. Now instead of the fluid draining to his stomach cavity it was trapped in his head and had to be removed manually. Daily the little guy's head was poked with a butterfly needle and fluid drained. This went on 3 to 5 times daily until they replaced the shunt on the 11th day. We were sent home on the 12th day.
He has two curved one inch incisions on either side of his head about an inch behind his hairline. His first shunt was on his left side. This time they put it on the right side of his head to avoid opening the old incision again. The shunt is very noticeable because he is just an infant. He is just so tiny. It is so unfair...
January 2010
H is getting so big now! His shunt isn't nearly as noticeable and his hair is growing back. We've had no further problems since a scare back in October. He is almost sitting up on his own and has finally begun to roll from back to belly! Now I have to keep a closer eye on him.
Of course uncertainty reigns in the back of my head--will he have learning disabilities, how far behind is he really, when will the shunt fail, will I be ready? All awful thoughts, but I have to convince myself to live day to day and take it as it comes. Instead of worry, I consume myself with baby things--washing diapers, making baby food and just plain playing! I am starting to dig this stay at home mom stuff....
