Ideas..

I needed to jot these down so i can find them when its time!!

Hospital ideas!!
• Small tv trays
• Medical pack with a puppy or doll to get shots with her
• Onsies, so she won’t pick at stiches
• High fiber 2-3 days before surgery to avoid bowel issues. Also request miralax as soon as she can drink
• Start to get her to love ice chips NOW!
• Baby legs for arms and legs, rather than gowns
• Remote control toy (princess jeep?) to get her up and moving around
* A bag of prizes, she gets to pick a prize every time something 'bad' happens. Pokes, meds etc.

The anticipated phone call June 5th 2012

We got the call today from Linda, the scheduler for surgery. The date has been set for Tues June5th. Her presurgery cath will be Monday May 21, i got that call an hour after Lindas call. My emotions are running wild. I wanted to express them so i'll have this memory. I can't believe its here! I remember her being born, almost 3 years ago. I remember being so worried and afraid what would happen when she came. We didn't know if she would live or not. The Drs couldn't tell us how her heart would do on its own, without help from my body. She came on March 20, 2009 at 2 in the afternoon. After whisking her away quite quickly, they passed back by our room with her all loaded in the life flight transfer-mobile (thats what i named it!) After just a few hours we knew she was going to be just fine. We thought, with just a few surgeries, we'd be able to take her home. Well as the few days passed on, she came home at day 5 with NO SURGERIES!! Her little heart had a mind of its own and had figured out just what it needed to do to keep pumping. At 6 months old she needed her 1st of 2 open heart surgeries, called the Glen. This was to be a 2 week hospital recovery. She did amazing yet again, coming home in just 5 days!! This surgery was do-able. She was still a baby that slept alot. She didn't quite have that 'mommy' attachment. I could step out when i needed to, she didn't know any better. When that was over i remember thinking "Ahhhh we're done for a LOOONGGG WHILE!!" Well, that long while is now up! Its here! 2 1/2 months and its here. I truly don't know what to think, or say or feel. I'm scared to death FOR HER. I will be fine, i'm an adult. It will probably be one of the hardest things i'll ever do, but i can handle it. I have support from many, i have my Heavenly Father to lean on and I'm an ADULT! She is only 3. She is so innocent and tiny. She won't understand why she hurts, why she can't talk, why she has to stay away from home for 3 weeks. And i don't know how to explain it to a 3 year old, i don't know how to help her. It breaks my heart. I wish i could trade her places. I'd do it in a heartbeat. Thats all i'm feeling for now. I'm sure there will be many more posts to come in the next 2 1/2 months.


Birth

 1 year old

 

 2 years old

 Almost 3 and sassy as ever!!!

The Fontan Plan

Cath end of May, surgery first of June.We won't know exact dates until the schedulers call, but that's the plan. Its real now, i secretly hoped we'd get another 6 month pass.. This is where i go into denial/hibernation mode so don't worry if you see my in my pjs at walmart at noon. I'm fine :) The 2 worst parts of the day were #1, 'make sure she doesn't get sick before then' and #2 'Plan on 3 weeks in the hospital' Although i don't believe that, because she ALWAYS beats the odds, it was hard to hear. I thought 2 weeks was what they say, i guess its longer.. Again, i'm going with 5 days ;) Ok maybe 10 is more like it. But not 3 weeks! Not Super Libbi!!
You will be hearing from me often i'm sure. This is where i turn when i'm stressed! The next 3 months will be tough i'm sure. But we'll get through :)

Its been TOOOOO long!

I haven't posted an update in a looooonnng while!! Today is March 7. Tomorrow is March 8, and we are going to a Dr appt with Dr Menon at 11am. At this appt we will schedule a cath and the Fontan. My emotions are running EXTREMELY high this week! Last week Libbi caught metanpumia virus, which acts like RSV and was hospitalized for 2 nights. I'll post details and pics of that next. The Dr says we will schedule Fontan according to schedules at this point. Basically, she is ready, but not in desperate need, so we can choose. Well as i've thought about it, i choose NEVER! I will let you know what is decided :)
Her funny Libbi-ism of today is this...
I asked her to put her sippy in the sink please. She says No. You do it.
I said "you're a brat!"
She says very calmly and matter of factly "no i not, i Yibbi, a punkin"