About 10 days ago (on a Wednesday) a routine ultrasound revealed Hydrocephalus. While Amber was on her way to a second ultrasound, I got on a plane (see Bitter Sweet).
Read about Hydrocephalus
By the time I arrived in Minneapolis, the second ultrasound (with a more specialized radiologist) revealed a bleed. On Thursday, a Fetal MRI confirmed both: cerebral hemorrhage and hydrocephalus. And then came the best part, trying to make sense of what little information we had. On Saturday a doctor finally called and asked Amber to come over to the hospital for more testing: this included another ultrasound, some platelet testing and a brief chat by the on call OB who informed her she needed to transfer her care to a perinatalogist. Call them first thing Monday morning. It was Easter weekend after all.
Monday was spent calling doctors to make sure everyone knew what the plan was (no one did). Information was repeated and repeated. Last names and insurance information over and over again. Then calling work, arranging for disability/maternity etc. more forms need to be signed and faxed. Since this was urgent they would fit her in by Friday. FRIDAY! So, why don't you go home, hang out, and contemplate this: cerebral hemorrhage and hydrocephalus. And we'll see you Friday.
Read About Brain Bleed
Friday: I spent the entire day with Diego so that Mom could go with Amber and Alex. We started our day with puzzles - shapes & Elmo. He likes to put the pieces in the wrong place and then say "Noooo" and then put it in the right place and clap for himself. We went outside and went through an old pot of decorative glass marbles. We put them into piles - blue, purple, green and 'other'. Those that didn't fit got tossed mercilessly out of sight. The rest were arranged neatly in lines, then piles, the piles were moved from one step, then another. He enjoys these games. He enjoys labeling things and learning about his world. He showed me the 2 plastic chairs in the backyard - "Dodo Chair" - the blue one and "Baby Chair" - the pink one. Things one can touch (balls, toys, bike) and things one cannot touch (the grill - "HOT", Daddy's tools, Grandma's cigarette butts - "YUCKY". Sitting on the couch last night he looked at Amber's belly, touched it and said "baby". Then to Mom's belly and said "fat", then over to me "two fat". :-)
I wish I could tell you something definitive but I can't. The perinatologist had a very very bleak outlook - baby unlikely to survive, extensive damage. Geneticist running all kinds of tests - some will come back Monday ... some in 3 weeks. 3 weeks. THREE BLESSED WEEKS! Neonatologist - confirmed blood in 3 ventricles and hydrocephalus. But this is 'atypical' and 'unusual' and they aren't sure how to proceed. It's possible that because of the brain's malleability that there will be little damage. They won't know until she's born. The pediatric neurosurgeon (who Mom hopes will be her 4th husband), seemed as perplexed as the neonatologist - 'we've never seen this before', 'don't know what caused it', 'we'll have to wait and see'. And these guys are the experts. We need Diego for this one. Which one is purple? Green? Which one do we throw away?
Dr. Mahmoud - the 'handsome' neurosurgeon
They do have a plan. All 4 doctors were meeting Friday afternoon. They will induce on Tuesday unless they decide on a c-section. I pray that May will bring FLOWERS.
Is this RARE?
Kim, I hope things are being arranged and that Amber and her baby girl Yesenia have had a chance to love on each other before the surgery. THInking of you all.
ReplyDelete