Monday, March 22, 2010

A quick update

Yes she is getting tubby!
Sorry to keep you all in the dark but Amber has not been sleeping lately and I haven't had the brain power to share any updates!
Our surgery consult went really well. The surgeon sees more diaphragmatic hernias in a day than most people see in a year, so he really knows his stuff. He told us there are two types and she has the less severe type. Amber's is coming up right under her breast bone (sternum) and going over the heart. It sounds horrible but he said the heart unlike the lungs is a strong organ that doesn't mind having the bowels in front of it. The best news from the visit is that Amber (at least for now) will not have to have surgery. He would like to wait and find out what is going on with her genetically because he is not convinced that fixing her hernia will fix her weight/growth problem. I'm completely fine with this, I'd rather her not have the surgery if she doesn't really need it. When we were in the waiting room there was a 7 month old boy the same size as Amber (he was a little shorter than her) but it was so nice to see another baby like her!
We also saw another geneticist Friday, at Children's. Yes she makes number 3! She and a specialist looked at Amber. They were really convinced she had a syndrome similar to Beals and Marfan but she is still not a fit for this one either. They were just as confused with her as everyone else has been. They took a whole bunch of blood to test for some more things but we won't hear any results for at least 6 weeks. We'll be seeing them again but we're not sure when. We still haven't heard any results from her skeletal scan, we probably won't until the 1st of April. It could either give us a positive or rule out Juene Syndrome and possibly some other things.
Today was Amber's 6 month appointment. It went pretty well she is 8lbs 10oz and 23 inches!! She is getting soo big! She officially does not fit her car bed anymore, this is great but she has a hard time breathing in her upright car seat. The Dr is trying to get us in to have her take the car seat challenge again. It's really uncharted territory, usually when a preemie who needs a car bed reaches the time they would have been born they are transitioned into an upright car seat and they do not need to take another car seat challenge. It will be really weird to have her in with newborns. Our other exciting news is we're supposed to start her on veggies! I'm not sure how I feel about it. If it helps her sleeping that would be great but if its going to make her choking worse I'm not excited about it.
I'm really sorry if this doesn't make sense Amber has been hardly sleeping. She will do 1 1/2 hour to 2 hour stretches at the most but she's getting up at 1am and not going back to sleep till 6 or later and not napping. The two of us were able to nap for almost 4 hours today but she got three vaccines so she probably won't sleep through the night. The poor thing you can't even brush her leg without her screaming.
We'll I'm off to bed praying Amber sleeps tonight, our warm weather comes back and we can get back to walking!


  1. Good Morning. I hope you are sleeping as I write this. I'll type VeRy quitely :) Thanks for the update! So glad she doesn't need surgery. Amber's baby bunny pic was a sweet addition to our program - which simply would not have been complete without her! :)

    Hey - if you & your mom/hubby/friend/whoever would like to go shopping or out to lunch or a movie - or whatever - including any combination of the above :).... don't hesitate to ask Strike & I if we'd like to babysit :) If it's in the afternoon/evening, Playmaker might even join us ... thereby creating a 3-1 TLC giver ratio :)

  2. I wrote a note on here earlier..dont know what happened to it! Amber you are just so cute...that little belly just cracks me up..I keep coming back to look at you! I hope you liked your squash for dinner, and I hope you sleep like a baby tonight!!!??? Who came up with that saying! Apparently babies dont always sleep good! Amber, I hope you sleep ALL night and your momma and daddy get some good rest. Love you guys..thanks for the updates Skye, you're awesome!