(Originally published to Sam’s Caring Bridge site on 2.7.19. To read all previous entries from Sam’s NICU journey, visit his Caring Bridge site: https://www.caringbridge.org/visit/samueldwenger)
As I write this, it’s about 8pm on a rainy Thursday in February. At 8pm exactly 9 months ago, I had been been lying in Triage Room 1 in the maternity ward at Southview Hospital for just a few minutes with a blood pressure cuff on my arm and heart rate monitor around my 29 week pregnant belly. We had no idea that two and half hours later we would be meeting the tiny human that would change our lives forever…
I know every parent would agree that time flies, but I just cannot, cannot, CANNOT believe that our little Samuel is already nine months old!! It seems like I was just holding his fragile 2 pound, 10 ounce body against my chest and putting the tip of my pinky in his little hand. But as you can see in the photos, he’s not fragile anymore… he’s quite hefty in fact! At his last checkup he weighed in at 17.5 pounds!
As a Kettering NICU “alum”, Sam continues to be monitored by the NICU Follow Up Clinic at Cincinnati Children’s, as well as participates in their Early Prediction Study – a developmental study for preemies. Back at the end of October he had a checkup, as well as two study-related observational tests to look at his physical development. The doctor was happy with his weight gain, but concerned about a lack of range of motion, particularly in his elbows and ankles, as well as a diagnosis of “torticollis” (tilted/turned neck muscles). A physical therapist went over some stretches for us to do at home and also conducted the two observational tests for the Early Prediction study. A few days later she called with the results of those tests and news some troubling news. Sam had scored low in both tests, and the physical therapist said this means he has a 30-50% chance of having cerebral palsy or another muscular disability. She said she would like him to start receiving physical (gross motor) and occupational (fine motor) therapies right away. Upon first receiving this news we were devastated – not because he was any less perfect to us, but because we couldn’t bear the thought of having to tell him he couldn’t do something down the road because of a physical limitation. Jim and I knew immediately that we would move heaven and earth to make sure that Sam received the assistance he needed. That meant weekly trips to Cincy Children’s Liberty campus and doing stretches and developmental activities at home 4-5 times a day. Sam could be one or even two years old before we will have a better idea of his physical development, but getting him into early intervention therapy gives him the best chance for continued progress.
His weekly therapy began right after Thanksgiving. For several weeks he went for two back-to-back appointments on Wednesdays, but that proved too grueling for him. He now sees PT one week and OT the next, etc. We also have a therapist from Help Me Grow – a free early intervention program that is nationwide but run locally through the county – who comes once every other week to supplement what he does at Cincy. All of his therapists are so wonderful and treat him with so much love and care. At home, we stretch him several times a day – ankles, legs, hips, torso, hands, thumbs, elbows, shoulders and neck – and make sure that he gets plenty of sitting and tummy time. It’s difficult to watch him cry during therapy and stretching because we know it’s uncomfortable for him – he has to work so hard even for seemingly small movements. For such a little guy, it is quite the workout regimen. Sometimes it feels like a never ending therapy cycle and that he doesn’t have time to just be a baby.
But Sam’s hard work is paying off – he is making progress! He is still behind, even for his corrected age of almost seven months, but all of his therapists are encouraged by what they’ve seen from him so far. He plays well with his toys in both hands and can sit for short spurts unassisted. Although he can roll from his tummy to his back, Sam is not really a fan of tummy time. He’s pretty adamant that he does not want to bear weight in his hands/arms/shoulders, so he hasn’t mastered pushing himself up to lift his head/chest off the ground, but we’re working on it. For a long time he did not kick or use his legs like most babies, but we and his therapists have worked with him to help “awaken” those muscles. He even kicked his little legs at his first swim lesson at the YMCA last week. His therapists have recommended that we see an orthopedic specialist at the end of this month to get a better idea of the state of his neck and spine. They believe his torticollis may be contributing to scoliosis, or possibly the other way around. Either way, addressing some of those structural issues will hopefully benefit his therapy progress. Although it may be several more months before we know what kind of physical challenges he might face, we are so proud of him for how far he’s come and we’re celebrating each little milestone.
Jim and I are often emotionally and mentally drained from worrying about Sam and working on his development, on top of everyday life, and sometimes our relationship suffers. It’s not easy, but we remind each other that we’re in this together and that this season of life will not last forever. We have great moments as a family and we have hard ones, and it’s comforting to know we have each other to cling to, vent to, melt down to, and come back to. There’s no one on earth I’d rather be parenting with. For now, we’re just enjoying Sam being little. Watching him grow and change brings us so much joy, and one smile from him seems to make all the hard moments worth it. We love introducing him to new foods – carrots, sweet potatoes & avocados are some of his favorites – and watching him figure out a new skill or toy. He’s very social and loves to smile at us and just watch and listen to people, and he has learned to hold out his arms when he wants to be picked up. He really does light up our lives!
We’re so grateful for those of you who have continued to pray for our family, and we ask for continued prayers both for Samuel’s development and for peace and comfort for our family as we face uncertainty and try to take life one day at a time.