Grade six. That is the size of Lilah's vsd. The largest possible hole. Today was their 2 month check up and shots. Every time I hear how "huge" her whole is, I feel sick to my stomach. I just want to live in denial that my daughter has congenital heart failure. At home Al and I are both doing every thing possible to help our daughter grow strong so she can get her open heart surgery. She takes 7 different medications daily ( 3 of which are diuretics). We have to blow air in her stomach every 3 hours to make sure her tube is in place. It is scary. I cringe every time she coughs ( scared her tube is not in her stomach). We have boxes and boxes of medical supplies, tubes, syringes, tegaderm, stethoscope, etc. With all the fear, all we can do is what she needs from us. We are her parents and protectors. I look in her eyes when she is awake (which isn't much throughout the day) and know how much I love this little girl. I hope that one day we will have our sweet Lilah healthy. Not lethargic. Not pale, but healthy and pink and full of energy like her sister. I know we will get there and it is going to be a long road.
Today she weighed 5lbs 6 oz, that is 2lbs 6 oz bigger than birth and she has gained 4 oz in a few days since being released from the hospital. Of course we need to keep a close eye on her to ensure she doesn't have to much fluid on her lungs. So we want her to gain weight, but not to fast and not to slow..
Olivia is up to 6lbs 8oz and that is 3lbs 3oz bigger than birth.
Al and I are tag teaming this parenting twin thing and doing amazingly well. Our schedule is working so far ( knock on wood). The girls are sleeping in their crib at night and doing great so far ( knock on wood). We are actually each getting 6-7 hours of sleep a night! ( knock on wood)....