Alright, for those of you who don’t follow Wallypop on Facebook…
We had our baby on November 26, it was an induced labor due to extremely low amniotic fluid. We’ve known the baby had hydronephrosis in his left kidney (means swelling from fluid) and there was some question about the status of his right kidney. Doctors varied between being very concerned (as in, he might not survive) to being unconcerned (as in, it will probably be fine and he’ll outgrow it). This was complicated by the only ped nephrologist in town being on vacation and unavailable for a consult before the actual birth.
The labor went well, all things considered. I don’t recommend pitocin if you can avoid it, but I survived and did it all natural other than the pit. I don’t recommend the perinatologist we used, but there are no other options in Des Moines if you need a perinatologist. He yelled at me, more than once. We named the baby Theodore Joseph, or Teddy. He was 5 lb 6 oz, and seemed tiny. (That was before he dropped to 4 lb 10 oz and seemed even tinier!)
We were discharged from Mercy here in Des Moines at 3 days old, the pediatrician on staff did not think that the prenatal ultrasounds warranted calling in the nephrologist for a consult before discharge, particularly since we had a consult already scheduled for that Friday (6 days old).
Our lives changed on Friday. We discovered that his right kidney was nonfunctional, and his left kidney was all but destroyed by the hydronephrosis. He was in kidney failure, also called End Stage Renal Disease, or ESRD. The nephrologist here admitted him to the NICU at Blank with a few options for treatment that he thought might help resolve the hydronephrosis and hopefully make everything normalize again and get that left kidney kicked into gear. I honestly don’t remember what all he suggested, only that his suggestions didn’t make immediate sense to me, given all the information we had, but I was willing to go with it because they seemed less terrible than the alternatives.
After an hour or so, it became evident that Teddy would need more expertise than is available in Des Moines, and we were transferred to Iowa City via ambulance. We got the bad news about his kidney right after lunch, and I don’t think I stopped crying until I fell asleep around 4 am in the recliner in the NICU room in Iowa City.
You can read all the details of what’s happened since then at the blog I’ve just started up to chronicle what is going to be a long journey. (I found the blogs of two other families with similar circumstances during our 3 week NICU stay, and they were quite helpful.) We are planning to start dialysis in the near future, with a kidney transplant once he gets big enough (about 20/22 lbs).
It’s been a difficult time for everyone in our family, to say the least, with mommy living in Iowa City and daddy doing the single parent thing at home. The kids, who’ve never experienced anything like daycare or even really babysitters, suddenly found themselves spending their days with relatives. We’re home and together for now, but I’ll go back to Iowa City for another 3-4 weeks when Teddy’s ready for dialysis.
So that’s what we’ve been up to! I hope the holiday season treated you better than it did us, and let’s all wish for great things in 2012!
After his second (of three so far) surgery – Broviac line for access to a vein in his upper chest, dialysis catheter in his abdomen, Picc line in his foot, IV in his hand, and you can see a little bit of his nephrostomy (a tube that drains his kidney to the outside) peeking out from his back, too.