written by Alyvia’s mother, Krysta
In March 2019, Che and I found out we were expecting a baby. We were beyond excited! In May, we found out we were having a little girl. We decided to name her Alyvia Rose Parker. All of our appointments showed she was growing normal and healthy. On November 12th, 2019, Alyvia Rose was born. At 8 pounds, 8 ounces, she was everything we hoped for!
Twelve hours later, in the early morning hours, Alyvia was taken to the NICU because she started to turn blue. The doctors diagnosed her with Tricuspid Atresia, a congenital heart defect occurring in about 1 of every 10,000 births. She was airlifted to the nearest children’s hospital, 3 hours away. I couldn’t be with her until I was released from my C-section. It was so hard to watch my baby be taken away from me. We had no time to prepare and no time to research care or learn about her diagnosis. We were told the steps for her repair would require at least 2, maybe 3, surgeries. Fortunately, she was able to skip the first surgery and come home 5 days later.
Two days before she turned 3 months old, she had her first open heart surgery. We traveled to the Children’s Hospital for what we thought would be a one night stay for a simple cath procedure, but she was admitted to ICU until surgery could be performed. After surgery, they discovered she had chylothorax. This was not uncommon and normally resolves on its own after about 6 weeks on a fat free diet. After learning about the chylothorax and then catching Covid-63, we were released to go home.
Upon returning home, the chylothorax, that was supposed to resolve on its own, did not. We were admitted back in the hospital in March 2020, at the height of Covid, for 29 days. I was the only one that could be with her because of all the restrictions in place. The only time her daddy could visit was by FaceTime. It was an unbelievably difficult time looking back on it, but when I was going through it, God gave me every bit of strength I needed to get through it and be strong for Alyvia.
It took time for her chylothorax to heal, but once it did she started to grow and thrive!
She is now 15 months old. She loves to play with books, dance to music, and watch her favorite cartoon, Mira! We are currently awaiting her next surgery, sometime between now and 2 years from now. We are preparing to travel to Boston Children’s Hospital, 28 hours from home, in order for her to receive the best care. It’s so nice to be able to know the next steps that will need to be made. I wish I had time to prepare and research care before she was born, but unfortunately they just didn’t catch it.
She is our only child, and we just love her so much! I am her biggest advocate and so proud to be a heart mom. I believe God blessed me with this beautiful child to teach me not to worry or lean on my own understanding, but to have faith in Him in all things. It is my goal in life to be the best mom I can be to her, to spread awareness for Congenital Heart Defects, and to give back whenever I can.
Thank you everything you do, Hearts of Hope Network.
Hearts of Hope Network is here to help Alyvia’s family. Because of generous donations and support, we have sent Tony’s Hugs packages to each member of this family and are here to help throughout their journey.
Alyvia’s family is also fundraising on their own. While we are here to help, the cost of caring for a critically ill child can be very extreme. Many times, their parents have to take off work or quit working to care for their child. We thank you for supporting Hearts of Hope Network through donations, and if you would like to help support this family even further, please consider following their support links below.
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Here at Hearts of Hope Network, every case is different and unique in its own way. We want to always be here to stand with these families in their time of need and beyond. Every donation goes toward supporting these families, and every donor is a part of showing these families that they are NOT alone.
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