Avery’s story as told by her Mommy:
Avery Jade Taylor July 24, 2012 - August 27, 2012
I’m writing this for my angel who received her wings on august 27, 2012. We found out we were having a girl and on my next appointment they said they needed to redo her ultrasound because they couldn’t see her heart or diaphragm.
During the ultrasound, the tech realized that our baby girl had 2 holes in her heart. So then we were scheduled for a fetal echogram with pediatric cardiologist where he found a very large hole in the bottom of her heart. Her arm was in the way so he couldn’t tell if she had any other defects. He decided that we would wait until birth to do a follow-up echocardiogram.
The big day came.. July 24, 2012 I was to deliver via c-section (because my oldest daughter was also c-section). At 9:09 am our 8lb 7oz 20 inches long beautiful baby girl cried out loud for the first time :-).
At 3 minutes old as her Daddy and I were naming her, she coded and they had to bag her. Within seconds she was ok. Her Daddy and I got to hold and kiss her a few times before she was taken across the pedway to Kosair.
As soon as I could feel my legs again I walked to go see my miracle baby. We couldn’t wait to hold her but we couldn’t for the first 36 hours because she had umbilical lines put in. Later that day we got the echocardiogram results: she was diagnosed with Transposition of the Great Vessels, a large PDA, blocked left pulmonary artery, and a 9mm hole in between the great vessels.
Because of the large hole, it gave a place for her oxygenated blood and unoxygenated blood to mix and be properly distributed through her body. You see.. the the vessels were backwards so it couldn’t give her body oxygenated blood like ours does BUT because she had the hole..it allowed her body to do it. It’s like the two defects actually compensated for each other. This was only temporary though so they needed to do surgery on her heart.
On August 7th at Doctor rounds they decided that they were going to do a total repair to her heart on august 9th. This meant only one surgery for the rest of her life.
August 9, 2012 came and we were in there with our Avery. We walked her down to the OR, we said our good lucks, and gave her all the love we had. We had a private waiting room, about 3 hours in they told us that the hole was totally repaired. The PDA had been ligated and now to the hardest part- switching the great vessels.
A few hours passed and they came back to tell us that she was losing lots of blood and at this point her survival rate was 50/50. And that there was a very high chance she would go in the ECMO machine which is a life support system that does all the work for your heart and lungs so the body can rest and heal.
After 9 long hours of open heart surgery, Avery was out and on the Ecmo machine. When we got to see her for the first time..it’s a sight that I will never forget or the pain that I felt run through my soul. I wish that I could have taken all those wires, tubes n foreign equipment n put into my body. As a mom u feel so helpless because Mommy’s fix everything.
Avery couldn’t stop bleeding so that night they went back in to stop what bleeding they could. The next morning I watched my baby open her eyes and wiggle her little feet. It gave me such hope that we were on the right path.
After a few days, Avery got septic for a gram negative bacterial infection which caused a lot of complications. Over the next 13 days, Avery underwent 6 more surgeries totaling 8. Her kidneys shut down and she was put on dialysis plus she had a stint put in her left pulmonary artery.
On August 27, 2012 our baby girl just grew tired and the fight was too much. At 9:45am Avery gained her wings.
Today is exactly 7 months from the date that she was born.. her 7 month birthday. This Wednesday, February 27th will be exactly 6 months from when Avery became an angel. I miss her everyday and I wish that she was here with us!! Thank u for letting me share my angel’s story. I love you Avery Jade Taylor!!!! Xoxo sleep in peace baby girl.
**Avery was also at Kosair Children’s Hospital where my sweet Lily was for her whole life. When Lily was there.. only two patients in the whole hospital were on ECMO- Lily and Avery. Avery became an angel on August 27th and Lily became an angel on August 29, 2012. We didn’t meet until one day when Emily wrote on Lily’s Facebook page.. I started asking Emily questions and we put together that we were both there.. we had the two ECMO babies. I knew there was another ECMO baby but I didn’t know if I was really allowed to go find the other baby.. I wish I had.. I wish I knew Avery & Emily before she became an angel.**
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