Parker’s Story

Parker Kay was born November 6, 2023, two weeks early. Her birth became scary when her heart rate started dropping and she went into distress. Honestly, we weren't sure how severe her heart condition was and if she'd even make it through delivery. Once she was finally born, she didn't breath for several minutes. She had to be intubated almost immediately, and I only got to see her for a few minutes before they rushed her to the NICU.

But, her journey started long before she was born. About 20 weeks gestation. At our anatomy scan, our tech thought she saw microcephaly and we were sent to a Maternal Fetal Medicine specialist. While it thankfully wasn't microcephaly, they began finding several congenital birth defects each week we went for the next 18 weeks. I had single umbilical artery, marginal cord insertion, and Parker wasn't really growing and was quickly labeled with Fetal Growth Restriction.

They found a Posterior Maligned Ventricular Septal Defect and Coarchtation and hypoplasia of the aortic arch. This was our first major thing. This led to Parker's 7 hour open heart surgery on November 13, just 7 days after she was born. She required multiple blood transfusions and they struggled to get her off bypass and her heart restarted. It took three attempts. In the CICU, we faced a wild journey we could have never imagined. When we first saw her after surgery, her chest was still open from swelling. I could see her heart, her sternum, everything. It's a sight you can never be prepared for. She crashed a few times over the next week, requiring intervention

and intubation. We battled Junctional Tachycardia and respiratory failure, but her team in the CICU was out of this world and Jesus was by her side every single day. There was one day we come in and she was doing a million times better, and it was unexplainable. Her doctor stopped and said,

"This isn't me. I don't know why she's thriving right now. This is God- He did this. Not me".

Through our time with the MFM leading up to Parker's grand entrance, she was also diagnosed with Fibular Hemimelia. This means that she forgot to grow the fibula in her left leg, and other bones in the leg, ankle, and foot can be often be affected too. In Parker's case, she also doesn't have an ankle, an ACL or MCL, and she's missing one toe, and was given a lucky toe that is just cartilage. Additionally, her left leg is about 4 inches shorter than her right at this time. On November 21, 2024, Parker underwent a Left Syme Amputation. This means only her foot will be amputated, and the heel she had became her ankle.

While we spent a year preparing, planning, and trying to make the best choice for Parker, we met with all the specialists, reconstruction, amputation, general surgeons, lower limb specialists. You name it- we've got their opinion on Parker's case.

Unfortunately, the unanimous decision was that amputation is the best option for her. the head of reconstruction surgery at Scottish Rite Hospital explained all of the details of every portion of the reconstruction and lengthening surgeries (roughly a surgery every 6 months for the majority of Parker's childhood) - and stopped and said, "Honestly, if this was my daughters case, I wouldn't put her through this. I can make it look like a foot, lengthen it to look like the other leg, but it won't ever work like a foot". We've prayed and prayed, and we know God is going to have his hand on every hurdle we have to jump during this transition and surgery.

At the moment, Parker is also battling severe scoliosis, fused and triangular shaped vertebrae at the thoracolumbar junction at T1 and through T4, fused L3-L4, C2-C3, Klippel-Feil Syndrome, an enteric duplication cyst on her intestines, VACTERL Syndrome, polvocalioctasis, hydronephrosis, and we're currently waiting on a repeat MRI on to confirm Tethered Cord, which may ultimately be causing her gastrointestinal issues, recurring UTIs, and seizure-like tremors and shakes.

Christian and I are so thankful for every person who has supported our sweet girl, prayed for her, showed up for her, and shared her story. We have a long journey ahead, but she's going to do great. She is a miracle, and we owe it all to God. She is our wildflower.