Isabella: Micah these are for you!!!

Friday, September 7, 2007

Micah these are for you!!!

Last night Matt and I went to dinner with Micah and Jason. We had a great time. It was so good to get to see them. So we would like to tell them a BIG thanks for everything last night. It is so wonderful to have gotten to form with wondeful friendship with Micah and Jason. They are truely amazing people. If you are interested, check out Gabi's blogspot. She has a link below. Micah and Jason are trying to start a wonderful foundation called Gift's for Gabi's Grace. It will be there to help families who have children with extended hospital stays. Micah has lots of wonderful ideas about other projects also.

Bella is doing wonderful today. She slept most of morning. We had to rush Matt to the eye doctor today because when he woke up he had a rip in his contact. Of course we did not have a back up pair. Everything is still on for us to go home on Wednesday.

CCVI (the visually impaired people) recommended light up toys for Bella. So, we went and bought her a glow worm. She loves it. It sings classical music.

Today the doctor told us we had to repeat our PCU for 48 hours. This is when we have to stay in her room for 48 straight hours and do all of her care. We can put her in the stroller and take her for walks and even take her outside. So pray that Matt and I don't kill each other. HA HA!!

Lots of Love

Megan, Matt and Bella

3 comments:

Little Smiths said...: Funny how no one asks the discharge planner if you really NEED to repeat PCU- we'll discuss it early next week...I think one day (or no days) would be plenty :) Bella and I rocked the other day- that girl needs some action during the day!! She's so sleepy!; Friday, September 07, 2007 9:16:00 PM
BeckyRN said...: She is just to cute, that I don't think you guys will be able to get out of the hospital with her. Me or Stacey might just walk off with her before wednesday!! Just kidding, I know you guys are ready to get her home, and although I will miss her and you terribly, you will have to keep the blog updated so we can still be a part of her life! She might get spoiled tomorrow night with lots and lots of holding. Love you guys.; Saturday, September 08, 2007 2:09:00 AM
Angel Gabi's Mommy said...: Bella is B-E-A-U-TIFUL!!! I am so glad to see her surrounded by so much love, inclduing Gabi's love:)
I thought the outfit would be a little big, but it looks like it fits perfect! I LOVE IT!!! Have a fantastic weekend, we'll be thinking of you guys!
Hugs to you and love from our special angel above...
Micah, Jason, and Gracie; Saturday, September 08, 2007 10:43:00 AM

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Story of Isabella Grace Gudde

Isabella was born December 23, 2006. She was born with a congenital heart defect called Truncus Arteriosus. She also was diagnosed with a deletion on her 22nd chromosome known as DiGeorge Syndrome. She had her first open heart surgery Febuary 27, 2007. She had 5 med flights last year. She had pulmonary hypertension and kept going into respiratory distress. After the 4th med flight, they decided to put in a trach and put her on the ventilator. She was home for 4 days before she was flown back. The fifth time was the worst. I really thought we were going to lose her. She again showed great strength and determination. She had a cardiac arrest on Aug 1, 2007. She was left brain damaged and we were told she was blind and deaf. Matt and I never accepted this fate and as time has gone on we have seen miracle after miracle. Bella now has her hearing back and much of her sight. She is still very far behind, but is making progress everyday. She came home September 12, 2007 after spending almost 160 days at Childrens Mercy in 2007. She was at home up until this February. She went in for her monthly check up and we found out she had a huge aneurysm at the conduit site on her heart. She underwent her second open heart surgery on February 21, 2008, just 6 days short from being one year post op from her first surgery. She is now home and doing fabulous. Enjoy the stories of our everyday miracles with Isabella.