Posted by Emmas Mommy when i was 25 weeks pregnant with my third child, we were informed that she had a massively enlarged heart (75%of her chest cavity). We were told to go home and wait for her to die,it shouldnt take more than two weeks and to call the doctor when she stopped kicking. I tried to grasp this for about 3 days, we planned a funeral, we picked out a little white casket, i tried to prepare myself for a still birth and pictured her little lifeless body wrapped in a blanket on her birthday. The day came when we were suppose to pick out her plot and her name plate for her burial. I looked at my husband as we woke up that morning and said "My baby isnt going to die". He looked at me with sympathy and gave me a hug, he knows that denial is part of the greiving process. I told him that he didnt understand... i knew she wasnt going to die. i didnt know how i knew this, but i knew it to be as true as the fact i was breathing. we didnt pick out a plot that day. the next 10 weeks held many trials, many fearful nights of counting kicks, many fetal echos, i was taking toxic doses of digoxin for Emmas heart. i was hospitalized for the last 5 weeks of my pregnancy due to emmas hydrops and having too much amnionic fluid. I remember the doctor coming into my room and telling me that he wanted to do a surgery to open my urethas (my kidneys were blocked due to fluid around emma) i had 4 times the normal amount of fluid in my kindeys. I told them no. I told them i wouldnt risk the pregnancy, we had come too far. I was now 30 weeks pregnant. I had to get to 34 weeks for Emma to go on ECMO.... 4 weeks to go! i was discharged on the grounds that i would move to orlando from my hometown of sarasota.. luckily we had friends that had a house they werent using and allowed us to move in. My parents, my husbands mother, me, my husband and our 2 other children moved to orlando. In bed i laid for 4 weeks... 34 weeks to the day my kidneys started to fail and emma was born via emergency c-section. We were told not to expect much of her when she was born, she wouldnt cry, and would be very floppy.... she had a scream like you have never heard before in your life... she practically jumped out of my belly! They told us she would be put on ecmo as soon as she was born... again, they didnt know our God obviously, Emma never spent a day on ECMO. she was put on a ventilator, and we were told she wouldnt live more than two weeks... Two weeks came, and the doctors had no clue what to do...she was still alive, barely, but alive.... They asked if we wanted to be transported to All Childrens Hospital and wait for a heart to be donated. Like we had any other choice... we told them yes... we never looked at transplantation as anything other than a way for emma to live, it didnt scare us.. death was scary enough... We arrived at ACH on saturday night... Emma was now 15 days old. She was listed, and waited 4 months for her heart. It was the longest but most valuable months of my life. I saw my little girl fight for life like no one i had ever seen before. I learned the importance of loving like there is no tomorrow, and to hold my children with the strength of a lion today, for tomorrow may never come... Emma Grace came home for the first time when she was 5 months old. we finally heard her cry.. and she had a beautiful face behind all that tape! We named her Emma Grace because we knew Gods Grace was sufficient... Emma has been home now for 5 months, there are trials, and there are heartaches, but there is so much joy wrapped up in the gift of life that was given to our precious child.... I look forward to getting to know you all, and i thank you in advance for letting me share the story of my precious Emma Grace
on 3/7/2002, 3:24 pm
Hello all,
I wanted to share with you my daughters story of transplantation...
This was June 5, 2001
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