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Saturday, October 19, 2013

Baby Ortyl blog lovers, meet my amazing Mother, Connie.

The idea of jumping onto Becky's blog and posting for a week is purely intimidating. I'm not even going to try to fill my daughter's shoes. She has walked through these past few year with such strength and beauty. I am in awe of her. I have missed her frequent posts, and have continued to encourage her to post about all of the amazing things that she and MOHF are doing. I hope her blogging will continue; I know that she gives us all so much.

So here I come, mother and grandmother, with a different perspective. It has been difficult to watch my helpless little grandson struggle for his life, and at the same time watch my daughter's heart break. Before I ship out for Tegucigalpa, Honduras, and my week with the BabyHeart Medical Mission, I'd like to share a bit about my story within the story.

When I was but 8 months old, I endured a life-threatening burn accident. Lying in a bathinette, I grabbed the cord of a coffee percolator, and dumped the entire contents onto myself: appliance, scalding coffee grounds, and boiling coffee. I've never known very much about the accident or the recovery process. I know that I went into shock after one loud scream, that I was in the ICU for about a month. My hospitalization was almost 65 years ago, at a time when parents were not encouraged, or even allowed to assist with their child's care. My parents were only able to visit with me for about one hour a day. I know that I incurred first, second, and third degree burns over my entire body, and the doctors told my parents that I would probably not survive, but if I did I would probably never have hair or eyebrows. I grew up in the midst of almost complete silence regarding the accident, my scars, and the story that went with it. And the fact that no one ever talked about my accident gave it a shameful feeling and so, of course, I didn't ask about it either.

Every now and then I learned a new tidbit, usually when I overheard my mother answering someone else's questions about the scar on my arm. I learned the most amazing and disturbing piece of information about eight years ago. My uncle (my mother's younger brother) told someone that he remembered seeing me the day they brought me home from the hospital. I was wrapped completely in gauze bandages, except for little openings for my eyes and my mouth. That visual brought some strong emotion to my reality, which up until then had been a story that I would recite without any real feeling. And yet, even though I had no memory of any of it, I assumed that the story was not a happy one.
When Becky & Greg were first told about Oakes heart defect, I thought surely it was a misreading of the ultrasound. How could they possibly detect a heart defect at eighteen weeks? Each time they went back for a repeat, I was certain the signs would disappear. This was not to be. I was delighted and honored when Becky and Greg told me that little Oakes middle name would be Lee, in honor of me, because they wanted him to be brave and strong, like I had been, to endure whatever was coming.
Towards the end of Becky's pregnancy, Dale and I visited the Ortyls and accompanied them on a tour of the NICU and the CICU, where we were told Oakes would be spending a good deal of time in the beginning. Although I tried to be present and appropriate, walking through those units that day was excruciating. I felt I was in a foreign world. It was terrifying to see those tiny, helpless babies hooked up to such big machines, with so many lines and monitors running in and out of their little cribs. Lights were blinking, monitors buzzing, and parents were sitting in darkened rooms near their sick little babies. I wanted to fold in on myself and become as small and contained as possible. I didn't want this world to become a part of mine.

Although Becky went full term, Oakes birth was a scheduled event. And unlike my experiences with the births of my other grandchildren up until that time (Beau, Gray, and Isla) I was not allowed to be with Becky at Oakes' birth. We Fox girls sat with her during labor, but when it was time for Oakes to be delivered she was taken away from us (Sarah, Christina, and myself) and rolled into an operating room, where the walls were lined with pediatric specialists...just in case. Becky had a few brief moments with Oakes once he arrived, and then Greg and I escorted the pediatric team that wheeled him over to St. Louis Children's and into the NICU. Those first few days were scary. We knew his heart was not properly formed, and that in a very short time he would need his first open heart surgery. I wanted to spend as much time with him as I could, and hold him as much as possible. For the first few days Becky was still in Barnes, but could visit often. Then she went home and was trying to spend time with Isla and rest up for what was coming. I sat rocking Oakes for hours, trying to keep him comfortable, and to prevent him from ever feeling alone. Of course, he was receiving excellent care in the NICU. Within a few days he was moved to the CICU, and it was in those first few days and weeks that I met so many of the wonderful nurses who loved and cared for Oakes. In the early, scary days, I leaned on Nurses Tammy and Mel. They were so kind, and competent, and reassuring.
Over the weeks, and months, I formed a very special relationship with Oakes. And he came to rely on me. We paced ourselves. He seemed to know when Dale and I would get on the road to return to St. Louis. I might get a report from Becky about how great he was doing, and mid-way there another report that something was happening, and by the time we arrived he would be sedated and paralyzed. He did his best to hold things together for as long as possible, but when he knew that Ena was on the way and his mom and dad would have some back up he could let go.

Every picture of Oakes brings a smile and a tear. He is remarkable. He was constantly enduring the most horrific procedures, but when he would wake up he would smile and joyfully wave his little arms. He went through so much, but he loved so well!

I don't know my story, but I do know Oakes' story, and you do, too. If he had lived, he never would have doubted for a moment what happened, and whether or not he was taken care of or left alone in fear. There is a blog a mile long, from here to there, documenting so many of the things that he went through in words and in pictures. And if he had ever needed to ask any questions, he could have asked any one of us, because we all know the story of Oakes. Becky and Greg made it a love story and they shared it with everyone. Oh, how that has given me hope. That my story was a love story, too.

So now I'm packing up and headeing to the hospital in Tegucigalpa, and a week of baby heart surgeries. You would never have convinced me that this would be so when I toured the CICU before Oakes was born. But over the months that I spent at SLCH, I gradually became familiar, and yes, often, even comfortable with the comings and goings in Room 9. I knew most of the nurses by name. And many of the docs, too. If I was there during rounds, and I stood by Oakes' door, they would include me in the discussion, asking how Oaksie was doing, asking about certain behaviors. You get to know people over the course of 15 months. My life in the CICU prepared me to say “yes” when Becky asked me to sign on for this next adventure. Like Becky said, I'm not sure exactly what I'll be doing...just anything they ask me. I'll be carrying a camera and a tablet, sharing photos and stories with both the MOHF blog and the International Children's Heart Foundation blog. It's been a long journey from my first disturbing walk through the NICU. Right now, I feel a healthy mixture of apprehension and excitement. I've been praying for the team, and the children who will be undergoing these life-saving surgeries. I am expecting miracles and healing, for the families and for myself. 

Connie, who is Ena to her Grandchildren, holding Oakes and giving him his first bottle ever.

Connie Lee & Oakes Lee having a little love-fest in May, shortly before he left us. 

Ena, Grandpa Dale, Isla and Ashby making a statement!

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