Our Story Part 1

For months now, I’ve told myself it’s time to start a blog about our journey with our daughter Reese. The problem is, it’s very hard to put into words about how difficult it’s been for everyone involved. I know we have needed to put a blog together to inform our friends and family. So many people don’t understand the situation, her future, and our status. I hope I can clear up any confusion, questions, or concerns everyone may have.

Reese McClain Nichols was born on July 25th, 2011. Her birth was absolutely perfect and is chronicled here in a wonderful blog post by our friend Elizabeth Lauer. On the 2nd night at the hospital they took Reese back into the NICU because she was having trouble breathing. The official diagnosis was a bacterial infection of the lungs. She stayed another week in the NICU unit of the hospital till she was released home. Our first few weeks went fine but with every passing day we were presented with new challenges. She had severe re-flux to the point that she projectile vomited almost every time she ate.  We struggled to get her to grow and even maintain the required ounces of milk she needed each day. We had many tests ran, we switched multiple bottles, formulas, and pulled our hair out every single day as we prayed she would grow.

Finally, we took a beach vacation in October and she got sick on our way there. We had to give her pedialye and did not have a small enough nipple to feed her with. We purchased our fourth brand of bottle and she took the pedilyte very quickly. Elizabeth decided to try it with the milk and she sucked it down quicker than ever. By the time we got home from vacation she was taking more milk a day than ever before. We don’t know if it was the new bottle or maybe she just loved the healing qualities of a beach vacation but she turned a major corner that week and started growing and eating like a champ.

As the months progressed we still knew she wasn’t growing as well as she should but also noticed she wasn’t hitting other milestones. At her 6th month checkup our doctor recommended that she be referred to physical therapy. At that time she wasn’t reaching for things or even moving her eyes to track and responding to us. At physical therapy, they recommended we see a pediatric neurologist along with having her hearing and vision checked. She passed both tests with flying colors but we could not get an appointment with a neurologist until June! A week after this news Reese developed pneumonia and was admitted to Kosair Children’s Hospital. While there we were able to see one of the best neurologists in the country and we immediately felt like God was answering some serious prayers. They ran all kinds of tests and discovered that she had a thinning of what’s called the corpus callosum in her brain. It’s basically the highway that connects your left and right side of your brain. She was also diagnosed with severe hypotonia, which is bascially low muscle tone.

Even today, as I write this she is 11 months of age and still cannot sit up or crawl. While on her first hospital visit, the doctors ran some genetic tests that they stated were just routine to rule anything out. In between our 1st and 2nd visit to the hospital we got the call that would change our lives forever.

Continue and Read Part 2 here