For those of you who would like to know what's going on with Jonathan, I will be posting pictures and updates for as long as updates are necessary. Hopefully this site will only be up for a short time before all you folks get a chance to come and meet him yourselves, but in the meantime this is a lot easier for me to do than keep up with the email load!
Jonanthan's story starts at the end of June, when Mom's first-ever ultrasound revealed that he had severe hydrocephalus and a possible heart malfunction. There was a suggestion at the time that he would not make it to birth or would be born needing surgery to drain the huge amount of fluid buildup putting pressure on his brain. The CSF fluid was already pushing on his brain, and we're still not sure what this may have done to his development; the question at the time, as Dad put it, was not "if" he was brain-damaged, but "how much". Subsequent ultrasounds showed the hydrocephalus (swollen ventricles at the center of his brain) gradually receding until an ultrasound in the middle of October showed his ventricles to be a normal size. His heart showed an extra superior vena cava vein but appeared to be functioning normally.
We were quite thrilled with the last ultrasound because it showed the good possibility that the new baby would be at least born alive and have a good chance to stay that way. The number of people praying for this little guy has been truly incredible.
Jonathan was born on Thursday, November 11, by C-section since he was not handling Mom's labor well. For the first five hours of his life he did splendidly, with a good strong heartbeat and an Apgar score of 9. We weren't sure if he had Down's Syndrome or not, and when he was born it was still very difficult to tell. As far as we knew right after his birth, he was doing just fine.
When we came to visit and began holding him, however, he started to turn blue. We took him to the nursery and they eventually took him down to NICU since between the question of Down's and the fact he had already been known to have a potential heart problem, it seemed like a good idea to keep a close eye on any oddities.
It turned out that his problem with breathing had to do with his lungs not being properly massaged during birth - a day and a half on a very low dose of oxygen fixed that, but by the time he began breathing better, his stomach began to swell badly and it became apparent he wasn't passing any waste; the trapped merconium was causing him troubles. He also got jaundice and was under the lights for another day and a half until his bilirubin counts came down to normal level. In the meantime, the nurses flushed him so many times that a plug was apparently pulled free and he began filling his diapers on his own, causing his belly to go right back down to it's normal size.
The upshot of the past few days of testing and activity has come up with a few results: Jonathan does have Down's Syndrome - type and intensity unknown for the moment - a small hole and a thickened wall in his heart that may or may not become a problem in a few weeks, and probably a disorder called Hirschsprung Disease, which basically keeps him from passing waste properly. He is having surgery today to confirm Hirschsprung and if it's confirmed they're going to operate on his intestine right then and remove the malfunctioning piece. It's very good that he can have the surgery now while his heart has a better chance of handling anesthetic than it might in a few weeks; and the longer the surgery is put off, the more swelling and difficulty will occur at the affected site, making it that much more difficult to fix.
Mom has been pumping her milk and we're just waiting for the surgery to be over to get a chance to feed him. Jonathan can't wait to eat, either - he sucks excitedly on a pacifier for about a minute and then gets unhappy and spits it out. He also twists around happily when he hears Mom's voice, arching his back and head in order to try to see her. This is a very good thing because not only does it mean he's not deaf, but he has better muscle tone in his back and neck than some Down's babies have.
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