Thank you for joining Jaxon's ECMOji's
Thank you for taking the time to visit our Walk for Babies fundraising page to benefit the NICU Akron Children’s Hospital.
As Jaxon's mother, I would like to share a little about Jaxon's NICU journey to show why we are so passionate about supporting Akron Children's NICU. Jaxon was born on November 19, 2018. We found out at 25 weeks that he would be born with a Congenital Heart Defect known as Tetralogy of Fallot. We expected a short stay for monitoring his condition before open heart at 3-6 months old. Jax was born at Akron General intubated and quickly sent over to Akron Children's NICU.
On day of life 2 Jax began having trouble breathing, and required extra care that was not sustainable. The doctors rushed through the night to put him on a heart/lung bypass machine known as ECMO after discovering that he was born with pulmonary hypertension. ECMO works by removing blood from the person's body and artificially removing the carbon dioxide and oxygenating red blood cells. Generally, it is used either post-cardiopulmonary bypass or in late stage treatment of a person with profound heart and/or lung failure allowing treatment of the underlying cause of arrest while circulation and oxygenation are supported. The doctor's told us they didn't know if he would survive, but they put him on the machine because they had hope. I will never forget sitting in the room next door while they worked on him, crying and begging God to spare his life. We had waited so long for baby Jax, and had already lost a baby prior to him in utero.
For seven LONG days and nights we waited, cried, and spent all day and night in the NICU. Our family never left Jaxon's side. The nurses, doctors, and staff helped us feel comfortable. I remember every night walking over from the room they let us stay in next door, while he was on ECMO, and checking on him. The nurses and perfunsionist would always talk with us and help comfortable. We knew that it wasn't there job to "make us feel better". But we always felt comforted by them and confident in the treatment he was getting.
Through our ECMO and NICU journey all of the nurses, doctors, nurse practitioners, respiratory therapist, cleaning staff, etc. all helped to make us feel like Jax's parents, even though we couldn't do much for him. I will never forget the first time I got to put Jax in my arms 10 days after he was born chest tubes in all it took 3 nurses and 1 respiratory therapist to get him there. Plus just simple things like calling us mom and dad, letting us change diapers, learning to give him a bath while he was on a breathing tube, and letting us take his cords off to get a quick picture on the floor with his blanket that said "I'm one month old". all things parents take for granted when they have newborns. When I look back at those days I have extreme gratitude toward everyone there.
It was truly bittersweet taking Jaxon home. We were so excited to take him home, off the cords, and be able to get into a routine at home. But the staff in the NICU truly became family to us. All of his primary nurses and some of the doctors we have stayed in touch with. We have enjoyed visiting with them when Jax's is up in the hospital for appointments, and many came to see him after he had his open heart surgery.
In 2017, Walk for Babies hit a mile stone of over $1 Million dollars raised since 2008. Without the support of community members like you, Akron Children’s Hospital would not be able to supply the needed assistance to patients and their families in the neonatal intensive care unit (NICU). Akron Children's Hospital's NICU treats 1,800 children annually and is nationally ranked according to U.S News & World Report.
Walk for Babies was created by one family and now has the support of over 1,700 participants, plus their friends and family. As we look towards the future, our goal is to continue to create a community event that makes an impact on local patients for many years to come. This walk has been a great comfort to the NICU families. Many items that have been donated have come from the Walk 4 Babies fundraiser. They were able to support the purchase of nice reclining chairs for families to sit in while they hold their babies.
Thank you for your support of Akron Children’s mission and dedication to improving the health of the communities served.
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