I am going to be super personal on this blog entry today. I have had an urge to talk about this on my website for awhile, and so, here I go....
On March 12, 2022, I gave birth to an amazing little girl named Paisley Kathryn. She was perfect and everything I had hoped for in a child -- dark brown hair (LOTS of it), the nose that comes from my family that I also got blessed with, and that perfect cry once she made her grand entrance into this world. Shortly after Paisley was born, the nurse had noticed that her lips were turning blue. This began the process of something entirely new.
After much testing, she finally got a diagnosis. Paisley has diagnosed with a complete AV canal, pulmonary atresia, supraventicular tachycardia, and Heterotaxy syndrome with malrotation in the intestine. I was never expecting anything like this. Once the NICU doctor came into our room and told us this, we thought our next steps were to deal with all of the funeral arrangements. Thankfully, we have an amazing children's hospital in Atlanta that specializes in cardiology that she was transported to and immediately got tests ran on her, blood work done, scans done, the whole nine yards.
She’s been back and forth between home and CHOA in Atlanta, GA. They claimed she will probably have at least 2 heart surgeries, (one happened already in July 2022) and then be on a transplant list just to live by the time she’s in her 30s. This condition is only seen in 1/100 nationally, but with Paisley's case being slightly different, hers actually only happens in 1/1million births. The state of Georgia has never seen all of these defects before in one child, and every cardiologist in the state is now familiar with her case.
The doctors had put in 2 stents in her PDA to keep her alive when she was 9 days old, and one more stent when she was 6 weeks old to reinforce the original 2, since one of the original stents had fractured, fraying the blood cells that were traveling through that artery. They went in her groin last June to check to make sure the stents were still doing their job. In July 2022, she had her first open heart surgery, at the age of 4 months, taking out that PDA artery and reconstructing that part of her heart that was formed backwards and not fully connected.. This surgery is called "the Glenn”. She will have a 6-8+ week recovery period., which is what we are currently going through. The doctors currently don’t know what the next steps are, as they’re waiting to see how she handles the first surgery to make the next steps. I am just so thankful our life with her is looking up. We are now just dealing with sleep regression and trying to get her to sleep throughout the night.
UPDATE: 01/24/2023 -- Paisley had her Heterotaxy surgery on December 12th. Everything went as perfect as it could have. They took her appendix out like planned, but her intestine was not as rotated as they thought it was, so the doctors didnt touch it. Shes even more at a lower risk for her intestine to twist than before.
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