Quick update on how Paige is doing. She had a doctor's appointment on March 4th. The are getting harder and harder because she knows where she is at and it scares her. She cries and cries during her echo. It is really hard but we try to make the best of it by bringing in snacks most of the time that doesn't help. She is gaining weight and her Pulmonary Band is getting tighter just as planned. She is 14 months old now. She is weighing in at 19 lbs. 14 oz. and is 30" long. Her head is still a little big but her little body is growing into it. She is scooting on her bum and gets around great. She is not crawling or pulling herself up to things yet but it time she will. She does not have to take amiodarone medicine which is a medicine used for irregular heart beats. We are trying a new formula because the Elecare Formula she was taking is a very broken down formula to make sure her stomach (malrotation of the gut) could handle it. We are stepping her down to Enfamil Gentlease. If she can handle that then she will go to whole milk in about a month. The scary thing is this summer Keith and I are going to be meeting with a stomach surgeon to talk about her malrotation of the gut to see when it will be necessary for Paige to have surgery again. Her next doctor's appointment is in 2 months. It has been such a blessing not to have to go the doctor so often!
I was very sad when February was over! It was so fun to go to the hospital and see Paige's picture in the calendar in lots of places! Paige had just had her second heart surgery exactly one week before this picture was taken of her. Her surgery was on Monday and her photo shoot was scheduled the following Monday. I knew we were not going to make it because she had just had surgery but to our surprise and Paige being the strong little one she is we made it and it turned out PERFECT!
Her doctor Beth wrote her story. This is what she wrote...
Paige's mother learned during pregnancy that paige has a rare heart defect. Paige has one pumping chamber, one valve instead of two, transposed great vessels, and abnormal pulmonary veins. Paige has had two of three scheduled surgeries in her first year of life and is one of less than a handful of children in the world surviving with this type of heart defect.
Paige's story is now on "pass along" cards with her picture on the front and back that says...
The Congenital Heart Center
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