We welcomed Adam into the world on June 13th, 2013. The delivery was long, complicated and ultimately terrifying for both Dave and I. After a 2 day induction, almost 16 hours of labor, 3 hours of pushing, multiple drops in heart rate due to the umbilical cord being wrapped around his abdomen and ulitmately a vacuum assist I would be lying if I said I felt immediate relief when he was born. I waited anxiously for his first cry and just kept asking the doctor over and over again if he was okay. I share this because what he told me is something that I have heard so clearly in my mind over and over again since. It felt like an eternity but he finally looked up from Adam smiling and said "He's perfect".
The meaning of those words have changed for me over time, but I know in my heart that they are so very true.
The days that followed are a mixture of moments I could describe to you in perfect detail and hours that passed in a blur. Adam was born at 7:22 pm and at 4am the next morning I witnessed his first seizure. It began with repeated right elbow flexion and happened while the nurse was in the room. I showed her, she resisted the movement and coincidently it stopped when she did that. Since a seizure shouldn't stop when you hold the limb we both noted it and hoped it was just a newborn nervous system working out the kinks. Unfortunately this was not the case and Adam continued to have seizures that eventually progressed to involve his right arm, leg and neck muscles. He was taken to the nursery during a 7 minute seizure just after noon. When it was clear he was stable, he was transported for a CT scan of his brain.
When the neonatologist came into our room we got the news that has forever changed our lives. He asked us to sit down, and very simply said "The news is not good". Even typing this now I can feel the numbness spread through me all over again. His next words were to tell us that Adam had a clot in his left middle cerebral artery that had cut off the blood supply to most of the parietal lobe, as well as part of the temporal and occipital lobes. In a very brief discussion we learned that there were no available treatment options for the stroke and that Adam would be monitored in the nursery while his seizures were managed. Any additional discussion of prognosis would wait until his consultation with the pediatric neurologist.
Shortly after he left Dave and I were able to go to the nursery to see Adam. This is where the tidal wave of emotion really hit me. I cried my first tears of the day and I felt like they were never going to stop. I was absolutely sure that his stroke was my fault - it was because I was induced or because of the traumatic delivery or something I had done while I was pregnant. The list running through my mind of everything I might have done to cause this was never ending. I can't even begin to describe the pain of feeling I had failed to protect my child and the overwhelming unknown of what this stroke would mean for his life. The next few days in the NICU were the hardest for me. Adam had several more seizures until his phenobarb level reached therapeutic dose. I was holding him during all but one. It was the most gut wrenching experience, but we are so lucky that his vitals always remained stable. Every hour that passed after his last seizure brought us closer to going home, and we were so thankful that they were able to be controlled so quickly.
Adam was hospitalized for the next six days while his seizures were stabilized on phenobarbitol and he underwent further diagnostic testing. We were fortunate to be able to stay in my hospital room as a "nesting" room even after I was discharged so that I could continue to be close to Adam for nursing. We won't forget the kindness of our nurses who helped us celebrate Adam's birth even in the midst of the sadness and uncertainty accompanying his diagnosis, the staff who went out of their way to help us feel comfortable or the doctors and nurses who continued to check in with us after Adam's transfer to the NICU. Although I know we were lucky to have such a relatively short stay, each day felt long at the time. I was desperate to have my little family all together and felt a deep emptiness at my limited ability to "mother" either of my children during this time. I will never forget the joy of having both our kids in the back seat as we drove home. In that moment I really felt that it didn't matter what exactly we were driving towards, that as long as we were together we could get through it. I still believe that today and try to keep those moments apart in my mind to help me stay grateful for our family under one roof (no matter how messy the house is, how tired I am, how loud the kids are crying...).
Dave and I are beyond blessed to have an amazing support system of family, friends and co-workers. I can't begin to share how much the love, support and prayers have meant to us through out this process. Our needs have changed from those first days in the hospital and I am so thankful for friends and family who have been willing to support us in the way we have needed at each stage. In the hospital I'll admit that I didn't even like looking out the window for the first several days - it was just too painful to see cars driving by like it was any other day when I felt like my whole world had stopped. I appreciated the voicemails and emails of support, but most days it was just too hard to actually talk to anyone or return any calls. Our parents were wonderful in taking care of Audrey and bringing her for brief visits, but even during those times sometimes it was hard for me to really feel present with her. I remember watching her make her index finger "dance" and bursting into tears because I didn't know if Adam would ever even be able to hold his finger up like that.
One of the hardest things following a diagnosis of perinatal stroke is that there are no answers. No one can tell you for sure why it happened or what to expect in the days ahead. There are no reliable correlations between imaging results and functional outcomes. Every baby and every brain is so different, there is no way to know for sure how each child will be affected. I wish I had learned something profound about how to deal with that, but I haven't. The hardest thing I do every day is try to enjoy my time with Adam at the stage he's in and keep out any worries about what the future might hold for him. It has gotten easier as the months have passed and we have started to watch his development progress, but it is still a conscious decision each day.
By the time we brought Adam home I wanted nothing more than to have as much time as possible at home with the four of us before Dave returned to work. We asked for no visitors until after he returned to work that next week and took some much needed time to settle into our new "routine". Adam's needs over the summer were those of any typical infant, however knowing what we did about his risk for issues we were even more focused on providing a rich environement for his neurological development. Through out my maternity leave I enjoyed time with family and friends, but found that I needed to prioritize my time with the kids. I felt (and often times still feel) that emotionally I had very little reserve and recognized early that I didn't have the same ability to overextend myself in ways that I'd been used to. I have dealt with anxiety issues since Adam was born that I've never had in the past. In retrospect I realize I was probably experiencing something along the line of panic attacks over the summer. This was worse during times when I felt overwhelmed by extra commitments, even things that I found enjoyable still required time and energy. Over time I have gotten much better at not over committing and respecting my own need to dial back on our schedule to make sure that I have the emotional energy to give my family. Although I still struggle with anxiety at times, it has become increasingly manageable. I am hopeful now that Adam is sleeping more regularly to return to one of my standby stress relievers, running, on a much more regular basis.
After remaining seizure free since that first weekend in the NICU Adam had a repeat EEG on August 1st. I can't begin to describe our joy when we found out that it was normal. The way our neurologist described it was that the "sharp waves" present on his last EEG were abnormal waves in response to the brain being irritated by the stroke. Those waves made Adam more likely to have a seizure thus requiring him to stay on the phenobarbitol when he was discharged from the hospital. Since those waves resolved we were able to wean him from his medication over a two week period at two months old. Given the long term effects of phenobarb this was a huge relief for Dave and I. Not to mention I was more than happy to be done with my twice daily reminder of his seizures!
When Adam was almost 3 months old he began batting at objects and we first noticed asymmetrical movement in his right arm. I put in a call to his pediatrician and he started occupational therapy the following week. We are fortunate work in a hospital based outpatient therapy facility and have some really great therapists as co-workers and friends. He began at a frequency of every other week until his fine motor skills really started to take off and we increased to weekly visits. Although Adam has never demonstrated a delay in his developmental skills the mild hypertonicity and weakness in his right upper and lower extremities have caused issues with the quality of his movement. He demonstrates a preference for reaching with his left hand, has decreased grip strength on the right side, at times when he reaches with his right side it is less coordinated/accurate as compared to the left and when he is not engaged in a task his right arm tends to posture differently as a result of the increased muscle tone. I share this because I think it is important to understand that Adam had a large stroke and it has had effects on his motor function.
The crazy thing is that if you saw Adam for the first time not knowing that he had had a stroke you probably wouldn't see any of those things. He is alert, engaging and interested in exploring his environment. He is able to actively move out of those atypical patterns to use his right hand for reaching and grasping tasks almost as well as on his left side. Unless you were trying to see how hard you could pull something out of his right hand compared to the left you would never notice the difference in grip strength. He can get up to hands and knees, rock back and forth and is almost crawling :). He can stand holding on to a support surface and has even started pulling himself up. He claps using both hands and bangs toys together...the list goes on. I am encouraged that his developmental skills remain advanced for his age despite the challenges he experiences on his right side. My heart swells when I watch him struggle through a task with his right hand rather than use his left and I am insanely proud of my little man each and every day.
I have no doubt that there will be challenges in his future, but I really believe that what our doctor told me in his first minute of life is as true now as it was then - "he's perfect". God made my son just exactly the way he was meant to be, and I am so blessed to have the opportunity to be his mother. I pray every day for the strength, patience and insight to provide him with what he needs to reach his full potential.
I am so grateful for what we have learned from other families who have been down this road before us and I have clung to every bit of hope in the successes they have shared so openly. I hope this blog is not only a way to share Adam's progress but to give back to others in that same way.
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