Tuesday, May 29, 2012
Tube is coming out!
YAY! so our CHLA trip went GREAT! with the exception of "someone" leaving Ella's formula ( that we get for free from insurance, due to it being a special formula) AT HOME!! So we had to buy the 30 dollar formula bottle when we got to CHLA even though we have 30 of them at home! HA!
Now to the good stuff! Thank you all so much for your thoughts and prayers, they worked! Ella's general surgery apt for her G tube and gall stone went AMAZING!! In fact our Dr tried to take our her G tube today! she said it looks amazing and we are ready! But I told her I needed just a bit more time, due to us still giving her meds twice a day through it....and she agreed. So we have one month from today and G tube is out!! that means my baby in COMPLETELY tube free for the first time in her life! And the hightlight of Surgery apt was NO SURGERY for her gall stone! they are not worried one bit after her X ray and said she may just pass it on her own! and since its not bothering her we will let it be!! How amazing is that!?!?
We were then off too Cardio, where we had an X ray that she hated for the first time ever, she has had about 25+ and they have never bothered her until now. Ella is weighing in at a massive 17.14 pounds and 27 inches long!! needless to say they are not concerned about her growing ;) Her sats were at 85- 91 the entire time and when our card came in he said she didnt even need an echo this time, cause she looks and sounds amazing!! Everyone kept saying they couldnt even believe she is a hypoplast ;) Card said X ray looks amazing, lungs are clear, no heart murmur. He was shocked at her! I have never been more proud ;) He was not even awear that we had already took her off her Lasix four months ago. He said I think we can start weening her off her lasix, X ray looks great! lol we told him she had been off it since her glenn four and a half months ago and, he glanced at assistant and said "damn" she really is doing great!" :) So end of story is we got the ok to travel!!! he told us to live a "normal" life ( with our obvious precautions with her immune system. just be careful) he also said.....this is a big one for me, its time to put her in her own room. :/ That will be REALLY hard for me but he thinks that will help her sleep better. ( as well as me and Brady) ;) So lots of wonderful things today. On top of seeing some fellow heart mommas and Ells Bells hanging with her boyfriend Bodie man (Amy Gerrish Bennett!) We are also not back until the week before Ella's first birthday in September!!! HA!! thats so crazy to say that! Her first birthday is in 3.5 months!?!?!?!? That is surreal to me.........and after that we are only at cardio every six months!!! <3
Made it home safe and sound, with a very angry, tired, feisty one in the car, and Ella didnt do so well either ;) Thanks again everyone SO much for your thoughts and prayers, they mean EVERYTHING to us!!!
Love the Beckstead 3 <3