UPDATED: Newborn surgery, shock and heartache
Wed Dec 12, 2007 at 09:42:06 AM PDT
UPDATE at the bottom.
Thank you for all your comments and congratulations! We got some bad news yesterday, though.
We took him to his 1st check up, worried about a tearduct infection and mild jaundice. We instead wound up at Children's Hospital of Oakland, where 2 CAT scans and an Xray confirmed that Julian has Craniosynostosis. Basically, it means: some or all of the sutures in the skull of an infant or child close too early, causing problems with normal brain and skull growth.
Two of his sutures are closed, and it'll require some surgery. What kind is still to be determined, but since it was caught SO early, it may be only an endoscopic procedure and then a helmet. The other option involves saws, and I don't want to think about it. I can't believe the things they're going to have to do to my sweet little newborn son.
Anyway, that's what the weird horn on his head is. Not molding from the birth, but this.
We don't know anything more than that (what kind, when the surgery is, whether he's affected permanently or not) but I'll let you all know when I do (probably later today we'll be told when we can go see the neurosurgeon). This is kind of a huge and horrible shock, and I find myself either pretending it doesn't exist, or weeping uncontrollably. Keep him, and us, in your thoughts & prayers please.
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12/13/07 Update:
We met with the Neurosurgeon and the Craniofacial surgery team at Children's Hospital of Oakland today.
The bad news:
They determined that 4 out of the six sutures in Julian's head are sealed shut, and that he will require skull surgery to remove chunks of bone from the top of his head and his forehead. This many sutures closed usually indicates a serious genetic syndrome, and they're going to require extensive genetic testing. They want to do the surgery in late January/early February to make sure his brain doesn't get squeezed. It will require an ear-to-ear headband cut, 2 units of blood and many hours of surgery. He may also require another surgery at 9 or 10 months of age to correct any lingering deformities in his forehead and face.
The good news:
His brain is fine. Right now, we have a bone issue, not a brain issue. Barring any complications in surgery, he will not be affected mentally. He may or may not need a helmet, depending on the exact surgery route determined to be best by the surgical team. The main surgeon, Dr. Sun, graduated from the Columbia University College Of Physicians And Surgeons with an MD and has been in the profession for 16 years. He is one of only 300 pediatric neurosurgeons in the United States, and is the Barry Bonds of pediatric neurosurgery, according to some of his reviews. He heads up pediatric neurosurgery at UCSF...and more importantly, is who my ped said she'd want to see her son. Julian shows no markers for any of the syndromes that have craniosynostosis as a symptom, and his exams have shown a perfectly healthy baby other than this problem. AND, we get a good six weeks of snuggle time before they operate...something that would have been impossible had my pediatrician not caught this so quickly.
Non surgery related good news includes:
Other than than, he's sleeping and eating like a champ, will take expressed breastmilk in a bottle (VERY important since he'll be in the ICU for a while after all of this has been done) without complaint, and is more and more alert every day, sweet boy. His sister loves him (and fed him a bottle today all by herself while I took my mom to the airport). And, what with having the baby and being too freaked out to eat much more than the veggies hubby keeps handing me, I'm already down to less than 1lb over my pre-pregnancy weight. Hubby's company has been VERY helpful and understanding about his leave being longer than planned. We've scheduled his baptism to be done by the same priest who did my daughter's.
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