Avalee Grace

Well, here is our blog...I have never blogged before, so what to say exactly, I am not sure. Wish me luck.

So Avalee Grace got here on Oct 5 @ 3:40 pm after I was sent to U of U hospital for an emergency C section. She was born at 3 lbs and11 oz, and was 15 3/4 in. I just cried when I got to hold her for the first time; I wasnt prepared for how much love I would feel for this tiny little person.

The entire pregnancy was rather complicated and filled with many unknowns about the condition of the baby. And now that she is here, the situation is still much the same: complicated and filled with unknowns.

We knew from early on that she had a heart condition called "Tetralogy of Fallot", which simply means that she has four different heart defects that run together. Her case is not very severe, but it certainly complicates matters. The cardiologists plan to operate when she is 6 months old.

Little Avalee has manifested some other anomolies: she had some quite violent spasms, which would cause her arms and legs to shake pretty consistently, her hands were clenched with her thumbs on the inside, and other minor physical things. She was assessed after she was born, and they judged her to be about 2 1/2 weeks younger than she was; she just didnt grow or develop well inutero, for some unknown reason.

She has been looked over by geneticists, neurologists, opthamologists, etc and the results are not very conclusive. It seems there are no chromosomal abnormalities, and no epilepsy. (And her spasms have lessened in frequency and strength, which is great.) But whether or not she has a syndrome or brain defects is unknown. The opthamologist reported that perhaps she is blind in one eye, and will only see in black and white in the other.

Other than that, the main concerns right now are that she is not gaining weight. She is still sitting at 3 lbs 8 oz, and has shown no real significant weight gain since she was born 18 days ago. The doctors are fortifying her milk in order to give her more calories, without increasing the volume of food that she has to digest. The doctors were talking today about the criteria of her discharge, and they said that they would like to see her get to be about 4 lbs and 6 oz before she goes home. The rate at which we are going now, that could be months...so prayers and fasting on her behalf would be hugely appreciated.

We just want to get home, though that will still be rather stressful, seeing as she will be on oxygen, and feeding tubes of some sort. But at least we would be together and be home.

We appreciate everyone's love and support, and have been so blessed to have friends and family like you. If you have questions, feel free to ask, and I will try to answer in this blog. Hopefully I have not made this too confusing or overwhelming.

We love you all!