February 22, 2019
We were so tired. Marley didn’t sleep the night before. I think we totaled two hours between us. 3am alarm and I felt exhilarated and truthfully a lot of fear. It’s been awhile since I flew with a toddler. I thought we planned well and she’d sleep. Decanted four bottles of milk into our 3 ounce or less baggies. She had toys and an iPad and we had each other. The five hour flight was uneventful. She did sleep, thankfully.
When we made it to Children’s Hospital of Orange County (CHOC) I didn’t know what to expect exactly. The check-in process different than home. We were given a state that would be called to protect privacy. I wondered if there were ever famous people that came here and changed policy for that privacy. I felt small. A bit groggy. Marley was fine, but I felt the cranky waiting to appear. We were called back and led into a room. I pulled out toys to entertain, but careful not to make her mad. Daddy’s eyes were closed head back eking out as much sleep as he could in the moment. In the stillness a small knock on the door and in bounds this petite tight curled woman in blue scrubs and glasses. I was caught off guard- not because there was someone in our room, but because it was our doctor in the flesh not a nurse, not someone checking us in.
She bursts in and says “your here, your here, your finally here. I never thought this day would come.” I stood speechless. Completely in awe. Marley turns shy, but she didn’t cling to me. I don’t think either of us said anything for a few minutes. We all just sat there watching Marley completely captivated. Doctor L’s IG posts didn’t do her justice- she was stunning. She starting asking us lots of questions. Letting us tell our story. She listened without judgement, without heavy emotion. We shared our love for Doctor B, but that the path was leading us towards amputation and we didn’t feel ready to go that route. We shared how we found her patient picture so similarly to Marley and how excited we were to be there. She pushes the rolling seat away and gets down to Marley’s eye level. She touches her arm. She holds it. Marley pulls away. But, she doesn’t shy away from her- she just continues to explore the space while L explores her. Doctor L is giddy, I can see it. I’m overwhelmed that we finally made it here. I feel the tears well up and I will them to go away. Be strong. Doctor L stands up and says I’m glad you didn’t amputate. I’m glad your here. She lays out a plan written on the exam table vellum. Three stages. Three surgeries. A plan of epic proportions:
1. Marley will get a tissue expander placed under her muscle in her upper back. A glorified breast implant. That will be a long expanding process. Months.
2. She will get a series of casts that will position her bones ultimately back to the normal growing position setting her up for someday gaining movement again. The process is like Invisalign for teeth.
3. She will come back many months from now and have a crazy long surgery that will transplant the stretched skin and muscle to its new home on her forearm and back of hand. This one will require months of recovery and physical therapy after.
A mountain of hope threaded with a mountain of climbing.
Next we get X-rays. The tech is equally as stunning with a full boatload of perfectly styled curls, full thick highlights and a confident staccato telling Marley to relax mama, it’s all okay and be over quick. She has a slight accent but I can’t place it. I think back to when my Daughter Soph asked me why I called our female dog Charlie mama all the time, when she had never had babies. I honestly didn’t know why, but in this moment I felt the comfort that nickname brought...
We returned to the same room we were in and passed by many people working in the space. Perhaps they weren’t looking at us, but I wondered how many knew we traveled across the country to meet THIS doctor- that we were diving all in. They all felt like rockstars to me even as they parted the hallways to let us pass.
A few minutes later Doctor L was back in there with us. She said the x-rays changed the plan a small amount and we would be combining the first two surgeries for the same time. We needed to move up the positioning of her bones so we can prevent any more malformation. They were more curved than she originally thought. She also said that Marley has both joints on her thumb and that she can extend the tip so she’ll be able to grasp one day. She said there’s no magic pill yet. But, science is improving so fast that perhaps in 10 years it may be a pill. I kinda inside chuckled, and quickly realized she was completely serious. Oh my limited imagination. She finished talking and I looked at Russ. I said are you excited to Doctor L... she said absolutely. That was that. We’d be meeting with Doctor B when we got back and get a plan for Ohio for recovery, but we would be back soon to get going on surgery one.
This was really happening. When she got up to leave she reached out to give me hug. It was a full on embrace. Deep with the feeling of giving someone else the care of your baby. Fully entrusting. I’ve read every single one of her IG posts and I know she wholeheartedly has chosen to pursue a career that is truly changing the lives of people. I have no idea what will become of Marley or her arm. But, I do know that we have hope. Lifelong hope. And that is worth so much more than any ideals we’ve created. It’s the most powerful emotion one can have.
She left the room, and for a second it was silent and my tears started to appear. And a second later she was back with a little child in tow....
We were so tired. Marley didn’t sleep the night before. I think we totaled two hours between us. 3am alarm and I felt exhilarated and truthfully a lot of fear. It’s been awhile since I flew with a toddler. I thought we planned well and she’d sleep. Decanted four bottles of milk into our 3 ounce or less baggies. She had toys and an iPad and we had each other. The five hour flight was uneventful. She did sleep, thankfully.
When we made it to Children’s Hospital of Orange County (CHOC) I didn’t know what to expect exactly. The check-in process different than home. We were given a state that would be called to protect privacy. I wondered if there were ever famous people that came here and changed policy for that privacy. I felt small. A bit groggy. Marley was fine, but I felt the cranky waiting to appear. We were called back and led into a room. I pulled out toys to entertain, but careful not to make her mad. Daddy’s eyes were closed head back eking out as much sleep as he could in the moment. In the stillness a small knock on the door and in bounds this petite tight curled woman in blue scrubs and glasses. I was caught off guard- not because there was someone in our room, but because it was our doctor in the flesh not a nurse, not someone checking us in.
She bursts in and says “your here, your here, your finally here. I never thought this day would come.” I stood speechless. Completely in awe. Marley turns shy, but she didn’t cling to me. I don’t think either of us said anything for a few minutes. We all just sat there watching Marley completely captivated. Doctor L’s IG posts didn’t do her justice- she was stunning. She starting asking us lots of questions. Letting us tell our story. She listened without judgement, without heavy emotion. We shared our love for Doctor B, but that the path was leading us towards amputation and we didn’t feel ready to go that route. We shared how we found her patient picture so similarly to Marley and how excited we were to be there. She pushes the rolling seat away and gets down to Marley’s eye level. She touches her arm. She holds it. Marley pulls away. But, she doesn’t shy away from her- she just continues to explore the space while L explores her. Doctor L is giddy, I can see it. I’m overwhelmed that we finally made it here. I feel the tears well up and I will them to go away. Be strong. Doctor L stands up and says I’m glad you didn’t amputate. I’m glad your here. She lays out a plan written on the exam table vellum. Three stages. Three surgeries. A plan of epic proportions:
1. Marley will get a tissue expander placed under her muscle in her upper back. A glorified breast implant. That will be a long expanding process. Months.
2. She will get a series of casts that will position her bones ultimately back to the normal growing position setting her up for someday gaining movement again. The process is like Invisalign for teeth.
3. She will come back many months from now and have a crazy long surgery that will transplant the stretched skin and muscle to its new home on her forearm and back of hand. This one will require months of recovery and physical therapy after.
A mountain of hope threaded with a mountain of climbing.
Next we get X-rays. The tech is equally as stunning with a full boatload of perfectly styled curls, full thick highlights and a confident staccato telling Marley to relax mama, it’s all okay and be over quick. She has a slight accent but I can’t place it. I think back to when my Daughter Soph asked me why I called our female dog Charlie mama all the time, when she had never had babies. I honestly didn’t know why, but in this moment I felt the comfort that nickname brought...
We returned to the same room we were in and passed by many people working in the space. Perhaps they weren’t looking at us, but I wondered how many knew we traveled across the country to meet THIS doctor- that we were diving all in. They all felt like rockstars to me even as they parted the hallways to let us pass.
A few minutes later Doctor L was back in there with us. She said the x-rays changed the plan a small amount and we would be combining the first two surgeries for the same time. We needed to move up the positioning of her bones so we can prevent any more malformation. They were more curved than she originally thought. She also said that Marley has both joints on her thumb and that she can extend the tip so she’ll be able to grasp one day. She said there’s no magic pill yet. But, science is improving so fast that perhaps in 10 years it may be a pill. I kinda inside chuckled, and quickly realized she was completely serious. Oh my limited imagination. She finished talking and I looked at Russ. I said are you excited to Doctor L... she said absolutely. That was that. We’d be meeting with Doctor B when we got back and get a plan for Ohio for recovery, but we would be back soon to get going on surgery one.
This was really happening. When she got up to leave she reached out to give me hug. It was a full on embrace. Deep with the feeling of giving someone else the care of your baby. Fully entrusting. I’ve read every single one of her IG posts and I know she wholeheartedly has chosen to pursue a career that is truly changing the lives of people. I have no idea what will become of Marley or her arm. But, I do know that we have hope. Lifelong hope. And that is worth so much more than any ideals we’ve created. It’s the most powerful emotion one can have.
She left the room, and for a second it was silent and my tears started to appear. And a second later she was back with a little child in tow....
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