CHD Awareness--Faces of CHD: Bryana's Story

On Nov. 9, 2010 My husband and I welcomed into the world our 3 beautiful daughter Bryana Faithmae Crews. She made the perfect addition to our already wonderful family. When she was born we had a lot going on our 2 other daughters (age 9 &5) were both playing t-ball and softball.  We thought we had yet another perfectly healthy daughter until Nov 11 when we where suppose to be dischared.

 Our whole world caming crashing down. They said they heard a murmur in her heart and Wolfson's Children's Hospital wanted to do an ecko on her. At 2pm they said they were going to release me but Bryana was going to be transfered to Wolfson's Children's Hospital. They took her to the NICU to get ready to be transfered. They had to put an IV in her head and that just killed me. Around 530pm they came and got her. We took our older daughters to my parents so we can be with her. When we got there they had done some test but no answers yet. They said we wouldn't know anything till the morning. When morning come we talked to the cardiologist and said that she was basically born with half a heart. She was born with one chamber instead of 2 and 2 main veins coming out of the heart instead of 4, and her aorta was turn the wrong way. I was told all the medical names but I just can't remember them. We were told that she will need in the future at least 2 open heart surgeries and possible 3.

 On Nov 15 we were finally able to take our daughter home. She was doing great. we didn't have any monitors or anything hooked up to her. On Dec 15,2010 She had her first cardiologist appointment since we came home and it was not good. Her oxygen was in the high 50's low 60's. Of course they wanted to admit her into the hospital. When we got there they put her on oxygen and scheduled a cath in the morning. When they did the cath they found that her veins from her heart to her lungs was very narrow and there was not enough blood flowing to the heart. They scheduled to put a shunt in on Mon Dec 20, 2010.

The morning of Dec 20, 2010 came and I felt helpless that she needed help I me as her mother couldn't help her. When I had to hand her over to the sergeon and they went behind the doors I just thought I was going to died. I wanted to be in there getting cute open and hurt and not her. They had her back in the OR for 5-6 hours (what to me seemed like a life time.)  When they were done nothing had us prepared for what we were going to see. She had a breathing tube, she had all kinds of IV's coming out of her and hooked to so many  monitors. All We could do was to touch her. I so wanted to crawl in that bassinett and hold her and take the pain from her.

She came out of the PICU on thurs Dec 23. She was doing reat. We were going to get to go home on Christmas morning but she had a little fluid by her left lung and her ribs. They gave her some medicine to help it go away. The next day they check again and It was gone. we got to go home. And Eryn and Jayda didn't want to Christmas until their baby sister came home. So we all got our Christmas present a day late.

She was doing great when we got home. Then when she went back to the cardio on Dec 31 they had found that the fluid was collecting again. She was amitted again. They put a chest tube in and found that she had chyle. On Jan 5 she was released on a no fat diet.

 We were so glad that she was home and doing great. On Aug 3,2011 she had her 2nd open heart surgery. It killed me once again to hand her over to the surgons again. I felt that I had air taken right out of my bady. This time it lasted bout 6 hours. When we went into see her this time we were somewhat perpared for what we were going to see. When we got in there she was not on a breathing tube. When she hear her Father and I she sat straight up. They had to sadate her. She had the IV's and all coming out and hooked up to monitors again. This time she was in for 9 days and got to come home. She was home for awhile had great Dr. appointments. In Oct 24 she was amitted again because it looked like she has chyle again. They put a chest tube and when it was all drained she went homw Oct 31.  The next week  Nov 7 she went back to the cardio and the fluid was back again. She was amitted and another chest tube was put in.   She spent her 1st Birthday in the hospital. on Nov 11 they put her on no food or fluids. She was given her nutions threw an IV. She was like that for 14 days. She went from being 13lbs11oz to under 13lbs. The surgoen finally decied to do emergency surgery to fix the leaking on Nov 22 she had the surgery. At first it looked like it didn't work because she had alot of fluid come out the day after surgery but on Thanksgiving it had slowed down. Then she was able to come home on Nov 29 once again on a fat free diet.

This year we spent Christmas and New Years home and so greatful that she is doing wonderful. She is going to have her last surgery which is the fontan Summer of 2013 then we should be done.  She has taught all of us that know and love her that anything is possible. Always believe and pray and prayers are answered. She is a happy 15 month old doing just about everything a 15 month old should do.