We knew about Rylee's condition, Congenital Diaphragmatic Hernia (CDH), while I was 21 weeks pregnant and were told we would be sent to London for her medical care, two hours from our home in Essex. Devastated to learn that our little girl had this illness, we went from joy to fear and worry. With our son Jacob also top of mind, we knew driving back and forth to London was out of the question but needed to stay close to our baby...
From the beginning, we were told that Rylee's heart, liver, stomach, and intestines were underdeveloped and in the wrong place. A hole in her diaphragm had caused her organs to move, or at least that was what we thought until we learned she didn't have a diaphragm at all. She was our little hero from the moment she entered the world, and while the weeks ahead were hard for her it was just as difficult to experience as her parents. No one wants to see their baby struggle... at times Rylee wasn’t getting enough oxygen in her blood so she had pulmonary hypertension and her heart vessels were very tight; she was hooked up to different drugs including to paralyze and keep her from moving; and she underwent 3 surgeries and 4 blood transfusions while having 2 seizures from all the treatments and tests. With all this going on, when we were feeling overwhelmed, Ronald McDonald House was a place to catch our breath just steps away.
We knew from the start that her treatment could be anywhere from a few weeks to months. When we started researching about Ronald McDonald House (RMH) London, and how much it helped so many families, the fear of "how will we do this?" went away. It became our "home-away-from-home", just steps away from Rylee's hospital room - we were excited and relieved!
For 117 days it was a struggle of ups and downs full of stress and worry. The House simply allowed us to step away from those worries, even if it was for a moment. Jacob loves RMH and still talks about, and misses, “The Lego and toys!” Even though we were there for a scary reason, having the House and staff to come home to every night was a blessing! Today, Rylee has a synthetic diaphragm and is doing great back home, but we can't change the fact her organs could re-herniate at any time. If that happens we find comfort in knowing RMH London will be there to keep us close once again.
For Rylee's first birthday we collected donations for the House. We hope the money raised will help other families, just like ours, when they need medical care in London or Windsor for their seriously ill children.
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