Hope

One doctor would come in the room and tell us exactly what was going on with Jordyn and tell us they did not think she would live much longer in the condition she was in but then another would say she is in bad condition right now but she is handling it pretty well although her future was still unknown. I always had faith even when things looked really bad because she was my little girl I had to have faith for her. I listened very closely to what every doctor and nurse had to say because they knew about Pulmonary Vein Stenosis and Jordyn’s specific case. I learned a lot about Pulmonary Vein Stenosis and Pulmonary Hypertension from listening and watching my daughter. I learned from Jordyn being in the NICU that doctors aren’t always 100 percent right. In the NICU they told me Jordyn wouldn’t be able to breathe on her own or even learn how to eat because of the extra chromosome 15 and severe brain damage but my baby learned all those things and more!

One thing I had a hard time with is trusting each and every nurse or doctor that we came in contact with, not that any of them had bad intentions but I wanted to take care of Jordyn myself and call all the shots myself but I couldn’t. February 15^th 2013 (4 days after her heart cath.) Jordyn got her breathing tube taken out but I still couldn’t hold her because doctors wanted to watch her breathing. I was extremely upset about not being able to hold her after I waited so many days to hold her. Realistically I had to go with what they told me to do for Jordyn’s health but it was really hard to not hold my little lady.

While recovering from the heart catheterization Jordyn lost weight. It took her a few days to be able to keep a bottle of milk down. Feb 20^th 2013 I discovered Jordyn getting her first tooth. She also started getting better at using her hands! She got a new book and some brand new keys from the hospital as a gift. It was great to see her learning to pick up things and grow developmentally. Jordyn loved keys and that book made a crinkle sound so she loved that too. She was always so happy and the nurses loved Jordyn. I always came to the room and there were new stuffed animals or toys. Another thing I would do when Jordyn was feeling well is get her dressed. I figured just because she had a disease she doesn’t have to look like. They say when you look good you feel good. She always got compliments on her outfits. She was a fashion queen on the cardiac floor and in the CICU.