Lilly had her one month appointment with her pediatrician last Thursday. The dr. was thrilled with how well Lilly is doing. In fact, she's doing so well that we cancelled Hospice. The only thing that Lilly is having trouble with is gaining weight. (She was 5 lbs. 4 oz. at birth, and over a few days dropped to 4 lbs. 8 oz.) At her appointment, Lilly was back up to 4 lbs. 11 oz. But that's still very low. She should be eating about twice what she is in a day now. (Lilly has a small head and is very thin, typical of Trisomy 18 babies.)
Lilly is getting a mix of breastmilk and formula. The dr. said to increase the amount of formula powder mixed into the water in her bottle. It must be working because she was up to 4 lbs. 15 oz. this past Monday. Yay!
One very important reason for Lilly to get up to a healthy weight is so that she will be a good candidate for open heart surgery. She has a hole in her heart and needs a patch on it. Hence that is one reason why our current prayer request for Lilly is that she'll gain weight.
Lilly is 1 month and 8 days old today. Thank you God! To us every day that Lilly lives is such a blessing. (You see, 50% of trisomy 18 babies die at birth. Of those that survive, 90% die in the first 6 months.)
Thank you for your interest in Lilly! We will keep you updated of her journey.