Our daughter, Hayden, was born on September 14th, 2022. I had a very easy pregnancy with no complications during pregnancy or delivery. My water broke the night before, so we packed up our bags and went to the hospital. Prior to this, aside from a kidney infection the week before, I had no complications or signs of concern that anything could be wrong. We had done all the genetic testing early in pregnancy as well as routine prenatal care throughout. When I got to the hospital, the nurses noticed meconium and asked that the NICU team be present during delivery just in case any further observation was needed. Several hours in, I was induced, and I delivered her quickly and without problem the next afternoon. She had APGAR scores of 5 and 7, so nothing alarmingly low. They explained that she did have some fluid in her lungs and that they would take her to the transition care nursery for observation, but that she’d be back in our room in a few hours. Little did we know that was not the case. Several hours later the neonatologist came into our room and explained to us that he was extremely concerned about severe brain damage due to her absent reflexes upon evaluation. She was not sucking, swallowing, gagging, or very responsive to many stimuli. Our hearts were shattered, we were extremely confused, and we really had no answers to anything.
That night she got an MRI and the following morning an EEG, which we were then told by the neurologist that afternoon indicated severe HIE, Hypoxic Ischemic Encephalopathy. At the time, we had no idea what this meant, but we knew soon after it would come to mean a long journey ahead, and one we had not even in the slightest expected. Hayden ended up spending 89 days in the NICU. She developed aspiration pneumonia within the first week, which was really scary. She was put on an NG tube, which then became a TP tube due to her risk of aspiration and inability to protect her airways, and then eventually a GJ tube to discharge us home. Thankfully we were able to bring her home about 2 weeks before Christmas, so that was an extremely special gift for our family.
She requires constant suctioning since she is unable to swallow, and that’s something that will always be required in her care. She has since been diagnosed with spastic quadriplegic Cerebral Palsy, and she also has both visual and hearing deficits. Her early intervention therapies began in the NICU and thankfully we have been able to continue those since she’s been home. We feel it has made a huge impact in her progress to date and are so blessed to have the team we do. Because of the high level of care she requires, I was unable to return to work. It was a tough decision for us to make, as a loss of income was going to cause us to make some adjustments, but I knew the best thing for all of us was for me to be there to care for her. I wanted to be involved in her therapy, the one taking her to and from appointments, and I didn’t want to miss a second of her life, as we were originally told it could be very short. Since being home, and really over the last several months, we have seen so much improvement in her and could not be prouder to see how far she has come.
Links to the items we are requesting:
Our family has selected these gifts to help make our lives more functional both at home and on the go. The Go To Seat is a portable postural seat that will allow us to place her in at home as well as when traveling or spending time outside. It’s lightweight and adjustable to use as she continues growing. We chose the Rifton New Stander because the one we currently are borrowing only allows her to have prone support, so it’s not quite as versatile or as easy to use. This stander will help her strengthen her core and improve head support in a variety of ways.
Gift: GoTo seat and Rifton New Stander
Location: Cobb County
Given: December 2023