Elaina is getting another resting day today. She did such a great job weaning on her ventilator settings yesterday, that they didn't want to push her too hard. We're aiming for Tuesday or Wednesday for getting her off the vent at this point. They might start her on some spontaneous trials tomorrow, we'll just have to wait and see how she's doing. She just spiked another fever, 39.6 (103 for the rest of us!), so she's getting some Motrin and some rest.
Not much else to update. Slow and steady! We're winning this one!
Hugs!
My cute little Elaina Bug
Grandpa's favorite smile!
Ben and Elaina, my luverbugs
Someone loves her big brother!
5 Days Old
Mom's First Kiss
Di George Syndrome Families
About Us
- Hollie
- North Salt Lake, UT, United States
- I am the lucky mother of two extra-ordinary children. My oldest is Ben. He is 10 years old and has more energy than even he knows what to do with. He is in 4th grade and is growing faster than I can keep up with him. My baby is Elaina. She was born in January of 2008. Elaina was born with some serious health problems. She has a Complex Congenital Heart Defect that includes: Pulmonary Atresia with an intact Ventricular Septum, right aortic arch, a leaky tri-cuspid valve and a large sinusoidal connection between her right ventricle and left coronary artery. She also has a chromosomal disorder called DiGeorge Syndrome or 22q11 deletion. In plain English, she was born with a rare but serious heart defect, as well as some other challenges. She had a bi-directional Glenn done in June of 2008. She is fed by g-tube, and continues to grow and amaze the doctors with her strength. She spent 18 months inpatient at South Davis Community Hospital after her Glenn procedure. She finally came home in April of 2010 and is thriving! She's in pre-school and loving life! Oh the adventures we have!!!!!
Family Photo
Mother's Day at home
Ben
1st Day at Tae Kwon Do
Elaina 4 months old
May 11 2008 - 1st Mother's Day
4 comments:
no news is good news. YAY!
Miss you! Glad to hear the bug is doing okay. Hope you're well too.
Loves and hugs.
Val
Sunday is a day of rest, so seems very fitting! Its nice that they're taking it slowly with the vent weaning; less risk of having to re-intubate her:0)
Praying that you are getting some well deserved rest & time with big brother Ben!
Yes, you are winning this one!
Big hugs!
Turtle steps! I'd rather them take their time than have to reintubate her. Try to get as much rest as possible.
(((HUGS)))
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