2 months ago
Friday, April 3, 2009
Libbi's checkup
Today we went to visit with Dr. Menon and it was exactly what we were expecting but we had convinced ourselves that what we were expecting was not what was going to happen, we were wanting our miracle!! Her oxygen level is too high, which when we left the hospital last week we knew that, but we were hoping it would drop. Dr's words were.. 'she's doing really good, too good..' What the crapola does that mean? Well apparantly it means possible surgery. So how does 'she's doing really good' equal surgery? Let me try and explain. In Ebsteins the main concern is not getting enough blood flow to the lungs, but because of her VSD she is getting too much blood to her lungs which could present problems when we do the Glen surgery (the one between 4 and 8 months). On Monday we will go and she will have a heart cathederization, which is where they go in through her veins in her thigh and test her oxygen, it's a more accurate testing than what they've been doing. It is a out-patient surgery so as long as she comes out of the anethesia well, we can come home Monday afternoon. They will then determine if she needs the banding surgery, and if she does it will be the following week. My biggest concern (other than the obvious) is that she can't eat past midnight on Sunday and we won't get there til 6 am, surgery not until 7:30 am! 7 and a half hours of not feeding a newborn?? Seriously?? How sad is that, the poor little bug is going to be starving, and we will be the meanies! She can have sugar water until 4:30 am and Kurt thinks that will be enough to hold her over but i know better. Us girls need our food! Wish us luck with that and hope for the best. (no banding surgery is the best) It's kind of a double edged sword situation because if the VSD starts to close and closes too fast she will need the Glen sooner, if it doesn't (which is what is happening) she will need the banding. Best case is that it closes a little bit more before Monday, and then stops closing for 4-8 months! That would be our miracle.
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This is Paul Cardell's CHD video. (I put it at the bottom of the blog, it fits best there..) It is shocking how many people, young and old are dealing with the same type of things we are. Take 9 minutes and watch, these are some of the cutest babies i've seen!! Libbi is about 6 and a half minutes into the video. (make sure you scroll down and pause my music playlist so you can hear his music, he is a pianist, it is very pretty!)



6 comments:
Oh dear... never the news you want. We were hoping you guys would stop by... we have a little present for you! Come on over on Monday so we can deliver! :-)
hey - we can all pray for more miracles like you've said - there's no limit to how many miracles we're all due!
we'll also pray she'll sleep thru most or all of her "feed-less" hours sunday nite!
and thank heaven for the priesthood and the blessings you and libbi & anyone else can have in your home!
I am so sorry about this little set back! After meeting the 'Zona' girls last night all I can say is enjoy every second with each of your darlings! Those women are so strong and they have taken a really bad situation and are making a positive impact on others. Little Libbi is our 'miracle' and she is such a fighter. I loved tending her today but all I could think of was I wasn't going to take for granted one second with her! So if you have to know why I fed her, changed her diaper, changed her clothes, fixed her hair, rubbed lotion on her, etc, etc, etc, I couldn't just sit and watch her sleep!! I love you all to pieces and I know we will get through this trial. Can't wait to see you tomorrow and enjoy another day with your family! (yes even Kurt)
Libbi is so beautiful!! My computer is broken so I haven't been checking in on her, she is precious! You continue to be in our prayers. We love you guys!!
As I've said many times before, Life is a roller coaster! All you can really do is fasten your seat belt and enjoy the ride! I believe in miracles too, and little liber's is a "MIRACLE" she continues to teach people that life is fragile and we need to love every moment we have. The Zonettes came over last night and we stayed up talking till midnight and they know to appreciate every moment and not to sweat the small stuff. We are here for you, The wolfpack will never not be... We love you, Aunt Netso
You'll be in our prayers all week! Libbi is precious! I know words are trite, but just know you're in our hearts and prayers...hang in there!
Tanya
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