Mar 25
Lscorpio2745 , Posted on SUPPORT NETWORK Blog

The day I almost lost my daughter

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The day I almost lost my daughter will forever be etched in my mind. We had gone in for testing the day before to figure out why she was experiencing pain under her left arm. Complications arose and they admitted her because she started having problems breathing. The next day it was determined her second congenital heart defect, sub-aortic membrane, was progressing faster than expected and she needed emergency open heart surgery to fix it. We had just celebrated her and her twin sister's 4th birthday two months before and everything looked good on recent her cardiologist visit that it was a shock. As they got her ready for transport to another hospital so her surgery could be performed and the rest of the family left to meet us there, I was there alone just watching my baby being prepped. That's when everything happened. Time stood still for me. All I remember is her nurse from that morning jumping on her stretcher pumping on her chest and me being moved to the side of the window where a curtain blocked my view and sitting in a chair. Only a couple of minutes passed but it seemed like forever. The child life specialist working that morning held my shoulders as she talked me thru what was happening. Tears pouring down my face and my lip quivering with hope that none of this was real. But it was real. Then I was told they got her back. She was still alive but barely hanging on. My husband was called to come back not knowing what was happening. We almost lost her I said as I melted in his arms and tears still rolling down my face. A whole team was going this time in the transport to help keep her alive so they can get her to the other hospital for her surgery. As I went with them and my husband headed back to the other hospital to wait again for us, I never felt more scared in my life. Please don't let her die again before we get there so she can have her surgery repeated in my head. We arrived and they wheeled her in as I watched from the hallway. Please be ok baby my head kept saying over and over again. Little did we know she would go into cardiac arrest again. For a long time this time. They managed to bring her back again and performed her surgery. It was the longest wait of my life not knowing what was going on. We didn't know until after she was out of surgery what had happened. She spent four days on life support fighting for her life and things didn't look good. We started preparing for the worst. I never thought my husband and I would ever have a conversation like that. It was finally time to take her off life support and see what she does. She had a 50/50 chance. It was all up to her. The night before I pleaded with her. I wasn't ready for her to leave me yet. She still had a life to live. She needed to grow up with her twin sister and go to school and make friends. I wanted her to graduate school, have a job and find someone to have a family with someday. I told her she needed to fight and open her eyes so she could see me again. The morning came and it was time to see how much of a fighter she was. And what a fighter she was. She prevailed over all the obstacles that came upon her. I witnessed a miracle. Miracle Mabel was her new name. We spent 29 days in three different hospitals over the holidays witnessing a miracle. Mabel is now 5 years old and starting kindergarten in the fall with her twin sister Maggie. She has had some more obstacles since then that we take one day at a time dealing with. Less than a month after coming home for rehabilitaion, Mabel starting having symptoms that we never experienced before. After taking her back late one night to the children's emergency at the hospital where her surgery was performed, Mabel was diagnosed with congestive heart failure. Really? Can't she/we get a break for once? As we spent a week back in the hospital where more tests were run and options discussed like medicine and possible heart transplant, Mabel stabilized after being put on a medicine regime. The medicine was working. Thank goodness for medicine. We now have a new normal in life. Never have we had to deal with medicine on a daily basis. Mabel still has her struggles. We all struggled at first with all of this. We always will. My daughter not only has two congenital heart defects, her first defect, coarctation of the aorta, diagnosed two days after she was born, but now she has a chronic condition of heart failure that we as a family have to deal with for the rest of all our lives. Did we ask for this? No. Does she deserve this? No. Shouldn't she be a little girl with no cares in the world playing with her sister without being hounded to take her medicine? Yes. But it is what it is and we as a family just take it one day at a time. We are enjoying life as much as we can and experiencing as much as life let's us. Would I have it any way? No because this is the life that was given me that I love because I have my daughters and my husband and that's all I can ask for. I'm grateful we are all still together no matter the challenges we have gone thru and have still to face.

1 Comment
  • AHAASAKatie

    Thank you so much for sharing this with us! What an amazing and inspirational story. Best Katie

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