During this week we were told that we couldn't have our cath on Sept. 3oth as planned, but instead it was supposed to happen today! Yesterday we got a call that our cath was cancelled to make room for an emergency procedure for a baby. We are rescheduled now for October 1st. My understanding with this cath that we would try to balloon her pulmonary arteries, possibly stent them, and if needed, open her up to patch her PA's, and while they were in, replace her conduit and close her VSD. I panicked- true heart-mom style. ;) Since the word "transplant" had been mentioned, I wondered why we wouldn't just go ahead and eval her for that, checking to see if she was a candidate. It made sense to me- why do 6-7 more surgeries, when we can do 1 major one and have a (somewhat) normal life, before she's old enough to remember much more... I talked to Dr. Shah (her cardiologist) about it. She is not a candidate. He thinks that our next surgery, cross your fingers, will happen when she is 2-3 years old, and if we're super lucky, maybe even when she's 5 (we won't know more until after her cath). Beyond that, we're hoping to get her to junior high age before the next and then adulthood... So, if the transplant were to be an issue, it would be in her 20's or 30's- which would hopefully mean there would be more hearts available. I feel much, much better about this- I really expected that we would be rushing from her cath directly into surgery- not fun! Especially since Felix is scheduled to spend the next 4 months, off and on, in Hartford, Connecticut. He'll miss her 1st Halloween, her 1st birthday... so sad!
We met with her pulmonologist this week too. She's still off oxygen, and we got the official okay to discontinue it completely (until the cath, at which point she'll be ventilated, and we'll probably come home on oxygen again... neverending oxygen madness!). She's officially part of the asthma clinic now, which also means she qualifies for the RSV vaccine again! Woo-hoo! We've got a few more scripts on board now with the asthma diagnosis. In addition to her flovent, she'll get albuterol as needed and prednisolone as needed. I'm hoping this winter will be smooth for us. I'm already beginning to quarantine her away from other kiddos. I'm also asking anyone who smokes to please wash your hands very, very well, clean your mouth, and change clothes before coming into contact with Grace. I sound like crazy mom, but, well, I guess I am! :)
We'll be missing our good friends' 1st and 2nd birthday party tomorrow because of this. ;( Bree will be 1 and Riley 2. They're sisters and Bree is one of Grace's preemie pals. Can you believe Bree was only 1 pound @ birth?!? It's amazing how far these girls have come!
Grace's 1st birthday is around the corner- December 1st! I think we'll have a get-together here at the house, and just be really careful and have TONS of hand sanitizer on hand! I'm thinking a fairy garden theme- maybe a whimsical toadstool with a fairy on top of it. I am in search of some creative wording.
This month continues to be crazy, but in a good way. We have lots to celebrate- and we're very thankful for that! My dad and step-mom come to visit next week. This will be the 1st time they'll be seeing her out of the hospital, but their 3rd visit since birth. My aunt and cousins will be coming too, so they can visit with my parents and meet Grace. The day after my family leaves, we'll be doing her cath. We'll spend the weekend in the hospital, and then come home. The next weekend is my mom's birthday, and then Felix will get ready for his 8 weeks in Connecticut. Poor guy!
I can't believe that the holidays are quickly approaching! I'm desperately trying to find an outfit for Grace for Halloween, but everything is either too big, too baby-ish, or too hot for her. Ideas?
Well, that's it for now- we get our 1st Mic-key button change this week, and we meet with her pediatrician and gastroenterologist too. What a week...