Journey Ordained: Ryan's Story

"Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be." Psalm 139:16

We had waited patiently for 9 months for our little bundle to arrive! We learned at 20 weeks that we were having a BOY and my coworkers at The Limited had lovingly named him, “Little Dude”. Little Dude’s dad and I had chosen the name Graham Parker for our boy but as soon as I held him in my arms, I knew he was not a Graham but a Ryan. Ryan fits him perfectly. Parker was the last name of my great aunt and uncle who I spent a great amount of time with growing up. Thus, Ryan Parker McCrary or RPM (more on those initials in a later post)was named.

My pregnancy with Ryan was rough. I was on bed rest towards the end because of toxemia and high blood pressure. Eventually my blood pressure led to a medically necessary induction. After delivery, Ryan was whisked away from us for prompt medical attention. We had no idea during our pregnancy that Ryan had anything wrong with him. But I had watched enough TLC shows on babies, to know that if the newborn child wasn’t given to me covered in “baby goo” that something was wrong.

Our obstetrician came to my bedside and explained that Ryan was born with a cleft lip and palate. I had never known anyone with this condition. But I later learned it is the most common birth defect here in the United States affecting 1 in 700 babies. Our OB said that we would be transferred to NICU where Ryan would receive the proper care and attention. As Dr. Kadum (my OB) described the journey, it seemed relatively easy. I would come to learn that his description of our journey and his own understanding of Ryan’s condition was not accurate but he was trying to ease our fears and provide comfort. I am still grateful to Dr. Kadum’s gentleness and compassion.

I wish some days that we had known while I was pregnant that Ryan had a cleft but in all reality knowing would not have changed anything. We owe the care afforded to Ryan in those early weeks and even now to Dr. Kadum and to our pediatrician, Dr. Young. 

During those early weeks, we spent so much time at the doctor with Ryan. From seeing the plastic surgeon to weight checks with the pediatrician to occupational therapy, we were BUSY! Ryan wasn’t the best sleeper either so needless to say, I was exhausted! For Ryan to sleep, he would lay on my chest on the couch. I am certain this is the most unsafe sleep position but he could sleep hours like this. Even at 11 years old, his favorite place to lay is on my chest. It’s also my most favorite place too!

Ryan had very special feeding needs and we used a pigeon nipple to feed him. It is hard on one side to act as a palate and soft on the other for sucking. It was pitiful trying to feed Ryan. The formula would go up through the opening in the palate and right out his nose. Ryan had occupational therapy weekly, speech therapy for 10 years, and some various therapies through the years. 

To date, Ryan has had 12 surgeries. On April 29, 2014, Ryan will have a maxillary distraction. Prayers are much appreciated. If you have questions about clefts please do not hesitate to contact me at lbshoemaker(at)gmail(dot)com! I'd love to hear from you! 

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