By: Connie McKinney
When you are expecting, losing all amniotic fluid is the last thing you think will happen before its time. My water broke at 19 weeks (PPROM – preterm premature rupture of membrane) and from that day on, our lives changed in more ways than we could ever imagine. Everything came to a halt and I was immediately put on bed rest at Huntington Hospital in Pasadena, California. 40 days later, at 24 weeks, we welcomed Bryce Andrew McKinney (B.A.M.) into the world, weighing in at 1lb 3oz on 11/12/15. It was a rocky road in the NICU but they were able to save his life and stabilize Bryce despite the many issues that come along with such a premature birth.
We eventually needed a tracheostomy, G-tube, and hernia repair surgeries so we had to transfer to a hospital that had those facilities. In March, we were transferred to UCLA’s NICU. After Bryce reached 7 months in June, we were moved to the PICU at UCLA. Howver, the PICU environment was not suitable for a preemie like Bryce. They didn’t know how to manage ventilator settings for a baby with BPD (bronchopulmonary dysplasia – lung disease as result of mechanical ventilation). As a result, Bryce’s condition worsened quickly and UCLA was unable to help.
Thanks to a Facebook group, a fellow mother with a baby with the same lung disease Bryce had informed us of the only BPD unit in the nation at Nationwide Children’s Hospital in Columbus, Ohio. It’s a daunting thought to move an unstable child to a hospital we had never seen, more than 2,000 miles away. We were approved by insurance for transfer on October 28, 2016, and we were able to stabilize him enough for the flight. Nationwide Children’s BPD unit specializes in understanding how to manage kids with this disease. We are now at 42% oxygen and his saturations are in the high 90s to 100. His CO2 levels are normal and we are weaning off medications. In addition to this huge improvement, we are now able to work on developmental aspects that will help him in his future. We’ve celebrated his 1st birthday since coming here, a huge milestone, and he is now 17 lbs and 5 oz!
There are many unsung heroes that have contributed to helping us get to where we are but the one I’d like to highlight with big flashing lights is Ronald McDonald House Charities of Central Ohio. I’ve always known the charity existed but I never fully understood what they were all about until I came in contact with their services. I’m sure most people never think about when they might need a place like RMHC but it was a major eye opening experience for me to see what they provided me and my family. Moving from California to Ohio with just a carry-on sized bag and leaving your home and job with very little notice, sounds crazy but it was possible for me without a worry because of the Columbus Ronald McDonald House. I have a place to stay, a place to shower and a place to have a meal. A place that truly feels like a home away from home.
The facility here is amazingly stacked with multiple guest rooms, family rooms, entertainment and movie rooms, laundry rooms, a gym and top notch kitchen facilities that are all indicative of the many generous people and organizations out there that have answered the call to the needs of families dealing with very trying times. We are floored by the volunteers that dedicate their time and energy to people they do not know. Whether it be the regular house staff or the countless volunteers (individuals, families, companies and organizations) that sign up to make meals for guests and perform services to give families some respite, or even that person that walks in off the street to drop off their several year collection of soda pop tabs (which I personally witnessed) that help pay for the utilities, they all contribute to making it easier for the family members of so many brave fighters.
We are so grateful for the Ronald McDonald House and words do not do justice the immense need their help fills. It is truly humbling and we feel so much gratitude toward this organization. It is because of RMHC and the people who contribute to it, that we’re able to be by our son’s side 2,000+ miles away from home without worrying about anything but his care. That gift is priceless. Thank you from the bottom of our hearts!