... for no reason at all :) Libbi looks perfect. I'm not even suprised! Dr Gray (very cute...) did her cath this time. He said she was the "poster child for the Glen" meaning her heart is doing exactly what it needs to be doing. Still not the miraculous "her heart is just fine" answer i wanted, but good enough! Fontan will be June 5.. In 10 days. The anxiety i'm feeling for this far outweighs anything i felt at her Glen. I think its because shes older. She is smarter, fiestier and on and on. I also think the fact that i have to leave my baby with someone for all of this is KILLING me!! My older kids will be fine.. probably better off.. but poor Drew. He won't know what the heck is going on! Where is my mama?!?!? Poor guy :( I worry so much about this. Fontan scares me. We've had extensive conversations with Dr Menon about the Fontan, what it is, what it does, how it will effect Libbi, should we move to lower elevation etc etc. He told me flat out (and because i forced it out..) that when he worked at Mayo Clinic 8 out of about every 100 post fontan kids would need transplants. He said here is Utah its double. About 15-20 will need transplant. Terrifies me! BUT we also talked about living each day in the moment, not stressing about it, we could all die tomorrow. Cherish each day. Enjoy it. Hug your family, and love them with all your heart. Needless to say, we are not moving. Maybe, if the time ever comes when it feels right and works out we will. But not now. Dr Menon said he knows plenty of post-fontan patients that live here in Utah. They do just fine. There is also a new study out (he's on the board) where they are testing to see if Cialis will help Fontan patients.. that is pending, but he was very informative about that.
Recovery: when we first talked about recovery he told me to plan on 3 weeks. Our heart buddy, Jack, just went home in 5 days post fontan! I blunty asked Dr Menon why he is telling me 3 weeks. He explained that there is a good chance she may need to stay that long, so he'd rather us plan for it and be suprised in a GOOD way then not and have to scramble to work things out. He said he wouldn't be suprised if she comes home in 7-10 days :) I liked that talk.
All in all, we are ready. She is ready, she is feeling yucky and tired alot. Her hemoblobin was 17, which is high. I tried to bargain our way out of Fontan, because things looked so good, but Dr Menon and Dr Day both said they felt it was time. Dr Menon even said her tongue looked blue :( I hadn't noticed that.
After 3 years of this, i finally understand what they are doing in Fontan. I can't explain it very well in words just yet, but i get it. That makes me happy. I feel smart, and like a good mom! I was feeling really down on myself last time when i couldn't even tell people what they were doing to her!
Libbi was SOO brave. Didn't shed a tear, but look at the fear in her face. Breaks my heart. She is so tough.
Libbi Strong! She says she's 'strong like a train!'
Laying flat for 6 hours after the cath. YUCK!
This is Libbis support group! They all wore these to school on May 21 :)
She rocks it. All jeweled up and ready to go!
Libbi keeps saying things that really bother me. She'll say 'when i die, i will live with Jesus huh mom?' I think she's got this from an older sibling. She also keeps saying she is going to have a heart just like Annies when its all fixed! And Annies heart is not broken, mine is. And Annies heart is pretty, my heart will be pretty when they fix it. She's killin me!! I can't even be around her without bawling!! Stay Strong Mindi.
Libbi Strong!!!
