Nathan was delivered by emergency c-section at 3lbs 1oz and a mere 14 inches. He was rushed off to the NICU to be tested and observed. The doctors had to make sure that his brain was able to sustain his body functioning...for a normal baby, that would mean vital organs functioning properly, but for a preemie, that also meant simply being able to breathe on his own.
He was breathing. Amazingly, he had apgar scores of 9 and 8 and gave a hearty yell in objection to being disturbed from his warm cocoon. That was a huge first hurdle. The next big concerns were the size of the cyst, the formation/condition of his brain, and his heartrate. They also needed to monitor his breathing just to make sure he was doing a good job...and he did have tykipnia. (He was breathing quickly and shallowly.) He had tachycardia too. (Rapid heart rate.)
To make a very long story short. In the course of Nate's NICU stay. Our doctors were consistently surprised at how well Nate was doing. At one point, our lead doctor said that Nate was "doing everything that he should be doing, and he's not doing anything that he shouldn't be doing." He also said that "if we didn't know already that there was a dandy walker diagnosis, we'd probably never have found out, because he's not showing any signs of the normal deficiencies and abnormalities."
Now I'm a believer in the power of prayer, and I have to say that at that moment I felt that God had smiled on me.
Even though he was doing well, they did an ultrasound and CT scans of his head and it showed that the cyst was SIGNIFICANT. When I saw the images, it looked to my untrained eyes like half of his brain was missing. The doctor said that it was fully intact, though, and that the corpus callosum was also intact (which meant that he would likely be able to have at least SOME motor skills.) But there was a great deal of fluid filled space that was pushing his brain into a much smaller area of his skull than it really needed. There was concern that the pressure being exerted on his brain would mean that he had brain damage.
This pressure did cause his ventricles to dilate (this is the condition called hydrocephalus) and he ended up having a shunt placed as the treatment. Before the surgery, Nate's head was oversized and they were measuring it consistently to track the cyst growth. After the surgery was done, there was an IMMEDIATE improvement in the shape and size that makes him look completely normal now. (Even though it was difficult to go through, my online research gave me optimism about this because the little bit of information that I had found showed that children who had shunts placed as treatment for dandy walker had positive outcomes. There were even reports of normal development. After the shunt is placed, their bodies even catch up to their oversized heads to make them look even MORE normal.) Our neurosurgeon was amazing and also did a lot to ease my fears. The first time that he saw Nathan, he cradled him against his chest and cooed to him. How amazing is THAT from a neurosurgeon?!?
So to bring you current. Nate is going on 7 months old now and has had bilateral inguinal hernias repaired. He's had neurosurgery for the shunt placement. His rapid breathing and heartrate turned out to be a PDA which is an open valve leading to his heart that is diverting blood to his lungs. It needs to be closed with a catheterization procedure this month. (This valve is a natural part of prenatal blood flow. It's necessary when mom is doing all the work, but this valve is supposed to close at birth. As a result, Nate is currently in congestive heart failure.) And he has another condition called hypospadius which is a urology issue that will require at least 2 surgeries to repair. (This is not going to happen until next year.)
From that description, you'd think that he's a pretty sick little guy. But he's developing beautifully and is actually showing no outward signs of having been through so much or of having so many issues to deal with going forward. The neurosurgery left a horseshoe shaped scar behind his ear and you can see a lump outlining the shunt. He also has a scar on his abdomen where the tube to drain the excess brain fluid was positioned. The hernia repair scars aren't visible at all.
He's currently receiving physical therapy to make sure that he hits developmental milestones, but my little rock star is smiling at me. He's babbling ma-ma-ma-ma when he sees me. He's trying to crawl. He's chewing on everything he can get his hands on. He's laughing with his whole body when I tickle his tummy. He's absolutely beautiful and I'm certain now that he's going to be ok. It'll take a lot of hard work, and it's taken a lot of hard work to get him to THIS point. But like I said, he's beating the odds.
He was breathing. Amazingly, he had apgar scores of 9 and 8 and gave a hearty yell in objection to being disturbed from his warm cocoon. That was a huge first hurdle. The next big concerns were the size of the cyst, the formation/condition of his brain, and his heartrate. They also needed to monitor his breathing just to make sure he was doing a good job...and he did have tykipnia. (He was breathing quickly and shallowly.) He had tachycardia too. (Rapid heart rate.)
To make a very long story short. In the course of Nate's NICU stay. Our doctors were consistently surprised at how well Nate was doing. At one point, our lead doctor said that Nate was "doing everything that he should be doing, and he's not doing anything that he shouldn't be doing." He also said that "if we didn't know already that there was a dandy walker diagnosis, we'd probably never have found out, because he's not showing any signs of the normal deficiencies and abnormalities."
Now I'm a believer in the power of prayer, and I have to say that at that moment I felt that God had smiled on me.
Even though he was doing well, they did an ultrasound and CT scans of his head and it showed that the cyst was SIGNIFICANT. When I saw the images, it looked to my untrained eyes like half of his brain was missing. The doctor said that it was fully intact, though, and that the corpus callosum was also intact (which meant that he would likely be able to have at least SOME motor skills.) But there was a great deal of fluid filled space that was pushing his brain into a much smaller area of his skull than it really needed. There was concern that the pressure being exerted on his brain would mean that he had brain damage.
This pressure did cause his ventricles to dilate (this is the condition called hydrocephalus) and he ended up having a shunt placed as the treatment. Before the surgery, Nate's head was oversized and they were measuring it consistently to track the cyst growth. After the surgery was done, there was an IMMEDIATE improvement in the shape and size that makes him look completely normal now. (Even though it was difficult to go through, my online research gave me optimism about this because the little bit of information that I had found showed that children who had shunts placed as treatment for dandy walker had positive outcomes. There were even reports of normal development. After the shunt is placed, their bodies even catch up to their oversized heads to make them look even MORE normal.) Our neurosurgeon was amazing and also did a lot to ease my fears. The first time that he saw Nathan, he cradled him against his chest and cooed to him. How amazing is THAT from a neurosurgeon?!?
So to bring you current. Nate is going on 7 months old now and has had bilateral inguinal hernias repaired. He's had neurosurgery for the shunt placement. His rapid breathing and heartrate turned out to be a PDA which is an open valve leading to his heart that is diverting blood to his lungs. It needs to be closed with a catheterization procedure this month. (This valve is a natural part of prenatal blood flow. It's necessary when mom is doing all the work, but this valve is supposed to close at birth. As a result, Nate is currently in congestive heart failure.) And he has another condition called hypospadius which is a urology issue that will require at least 2 surgeries to repair. (This is not going to happen until next year.)
From that description, you'd think that he's a pretty sick little guy. But he's developing beautifully and is actually showing no outward signs of having been through so much or of having so many issues to deal with going forward. The neurosurgery left a horseshoe shaped scar behind his ear and you can see a lump outlining the shunt. He also has a scar on his abdomen where the tube to drain the excess brain fluid was positioned. The hernia repair scars aren't visible at all.
He's currently receiving physical therapy to make sure that he hits developmental milestones, but my little rock star is smiling at me. He's babbling ma-ma-ma-ma when he sees me. He's trying to crawl. He's chewing on everything he can get his hands on. He's laughing with his whole body when I tickle his tummy. He's absolutely beautiful and I'm certain now that he's going to be ok. It'll take a lot of hard work, and it's taken a lot of hard work to get him to THIS point. But like I said, he's beating the odds.
I have so much more to say about the doctors and his care. I'll have to split it into little pieces to tell the whole story.
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