Gracyn’s story as told by her Mommy:
Gracyn was born on October 19, 2011. She was perfect and seemed healthy. A few hours after Gracyn was born the nurse wanted to take Gracyn to give her a bath and her daddy went with her.
He came back and told me she was breathing a little fast and they were just monitoring her. He went to go check on her an hour or so later and they told him she had to go to NICU because she wasn't getting any better.(I tested positive for Group B Strep and they think she got it). She just kept getting worse.
She ended up having to be intubated and was on oxygen and nitric (I think that is what it’s called). I had her on a Wednesday and they released me on Friday even though I begged them not to. I didn't want to leave Gracyn. Luckily a social worker got us a parent's room on the NICU floor. We got to stay there Friday night.
They called us at 5 am on Saturday morning and told us we needed to come talk to the doctor. When we got there the doctor told us that there was nothing more they could do for her and that she needed to be transferred to Children's in Dallas because she needed to be put on ECMO. I can't even describe how that felt.
I can't even remember most of that time period because I was just in shock and didn't know how to handle it. I had never been in that position before. So Gracyn was transferred to Children's when she was 3 days old. After she got there she made a miraculous turn around. She was doing so well that doctor's were trying to keep up with her!
When she was 6 days old we had a cardiologist come in and tell us some unexpected news. She told us Gracyn had a large hole in her heart called an atrial septal defect (ASD). I was freaked out! I had just come so close to losing my baby and now she has a heart defect.
The cardiologist assured us that it was ok and that it wouldn't harm her. Gracyn was released from the hospital on October 30, 2011. She was followed by the same cardiologist that she saw in the hospital. She did great until she was about 4 months old. She wasn't gaining weight or growing very well. She had a heart check up at 6 months old and they said everything was great. She kept having problems with weight gain and growing so in September 2012 I called and begged them to do an echo at her next visit, which was in October. They agreed and we had a sedated echo done on October 25, 2012.
After the doctor reviewed the echo she came in and told us that Gracyn has a large ASD still and that there was no chance of it ever closing on its own. My first thought was ok she will have the cath procedure done then. Well then the doctor said it’s not in a good place and it’s too large to do the cath procedure so she needs open heart surgery.
I was beyond shocked and devastated. I never thought she would have to have open heart surgery. I am still not completely over what happened to her when she was born. Since we found out she needs surgery it has been hard for me to accept it. It has gotten better since we finally found a good cardiologist, hospital, and team. She is scheduled to have her surgery on June 6, 2013. Even though she has been through a lot she is a normal 16 month old girl who loves to get into everything and run around everywhere.
Visit Gracyn’s website for more information about this beautiful girl:
www.caringbridge.org/
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