The day was July 14, 2011. I was rocking Molly while she slept in my arms, softly breathing. The sun was bright and shining in and there was a quiet in the air. My phone rang. When I looked down and saw it was a Children’s Hospital number, my heart started to race. This was it. This was the moment I had been waiting for since Molly was born, an unanswered mystery was about to be solved. Please God, don’t let this be bad.
Molly Kathryn was born on August 22, 2010, her exact due date. My pregnancy was uneventful with the exception of the horrible nausea I had during the first trimester. But at the end of my pregnancy, I noticed something that took me by surprise. Molly’s movement drastically slowed down. It worried me but I was told that as babies grow they run out of room and in turn slow down. Unconvinced, I made an appointment with my OB where he picked up her heartbeat with a doppler and told me everything was fine. I had a non-stress test a couple days later which was “non-reactive”. I sat for 45 minutes and only felt slight movements twice. I had an ultrasound following and Molly looked perfectly fine. A couple days later, Molly was born. My water broke and I went into labor with no intervention. I chose not to have an epidural. My labor was “textbook”. I only pushed three times before my beautiful baby girl came into this world.
Almost right away, I knew something was wrong. Molly was very floppy and lethargic. Her head tilted to the left. The hospital pediatrician was concerned with her low muscle tone and ordered multiple labs. I was especially concerned when my brother shook keys above her head and she did not wake up or flinch. It was during the second night that I began to panic. I held my sleeping baby after another unsuccessful attempt to nurse and started crying. “Rusty, there is something wrong with our baby.” I was terrified that she was going to die in my arms. I couldn’t wake her up. I called the nurse. She took her to the nursery to have another nurse look at her. She brought her back and told me she was fine. But I knew she wasn’t. We spent two additional nights in the hospital, drawing more labs and getting no answers. We were sent home on Thursday, the 26th and instructed to follow up with her pediatrician the next day. We were still waiting on results on her newborn screen which would hopefully be back and available to us at her appointment. We met with her pediatrician on Friday and her newborn screen was normal. Her pediatrician said she had benign congenital hypotonia which is a fancy term for low muscle tone. “She’ll never be a gymnast,” he told us. “Not in our family,” I joked. He referred us to early intervention and suggested we get her started in therapy. I liked her pediatrician. He seemed very proactive and I felt like we were heading in the right direction.
We met with a service coordinator through Kentucky’s early intervention program. We then met with an early intervention specialist who tested Molly and we were told she did not qualify for services. When I told this to her pediatrician he referred us to Cincinnati Children’s for a therapy evaluation with them. Her head was still tilting and she was still abnormally floppy. We were both in agreement, that she needed physical therapy. Molly did qualify for PT through Children’s and we started to go every other week. We worked on exercises to strengthen her neck muscles. Therapy seemed to help some however she wasn’t hitting her developmental milestones. She didn’t roll until she was around four and a half months. She was very unsteady and still very floppy. In February 2011, Molly’s therapist went on maternity leave. The PT subbing recommended that we contact early intervention again. I called them back and Molly had another evaluation. This time she did qualify for physical therapy once a week. She was now getting PT 1-2 times a week. She was still behind in her milestones. She was making improvement but not a lot. At 9 months she could only roll independently. If we sat her up, she immediately fell over. She was babbling and did not seem affected cognitively. When her PT came back from maternity leave in May, she was concerned with Molly’s lack of progress. She asked if she could speak with Molly’s pediatrician about seeing a neurologist. I was completely on board and so was her pediatrician. We set up an appointment with a neurologist through Cincinnati Children’s. Molly saw Dr. Thomas on June 30th. Unfortunately, I was unable to go. They say when it rains, it pours. And that was certainly the case for our family. On top of trying to figure out what was going on with Molly, I had a missed miscarriage at 10 weeks. I had a D&C scheduled the same day as Molly’s appointment and did not want her to miss it. I sent a trusted family friend with my husband and sister. My family friend took notes for me. Dr. Thomas ordered labs and an MRI of Molly’s head. I called that same day to schedule her MRI and on July 13th, we took Molly to Cincinnati Children’s Hospital for her MRI.
The day of Molly’s MRI was incredibly nerve-wracking. I was so nervous about the anesthesia. As a registered nurse, I sometimes know more than I would like. Her MRI was in the evening and the day could not go any slower. She couldn’t eat or drink after a certain point and I could not explain that to her. I tried to pass the time as best as I could. I took my sister to the hospital with us. We checked in and changed Molly. She was given oral solution that made her act drunk. She threw her head back laughing; she passed out on my shoulder. The plan was to do an MRI without contrast. My sister and I got to sit in the room during the procedure. I watched the monitors and I watched her little nose poking out from headboard. It felt like an eternity. We flipped through the same magazines over and over. And when the nurse finally came in, I was beyond relieved it was over. But it wasn’t.
“Did your daughter fall?”
“No”, I said.
They found something. I knew it. I also knew as a nurse, you can’t tell the family anything until you speak with the doctor. I was paralyzed with fear. There was something wrong with my baby. The nurse explained they would start and IV and do and MRI with contrast for a better look.
“I know you can’t say much, but did they find something?”
She didn’t say anything but the look on her face said it all.
Molly was awake by that point and I felt like the most helpless mother on the face of the Earth as multiple attempts to start an IV on her failed. Molly was screaming. The nurse made a comment about her being dry and dehydrated. No shit, I wanted to scream. She couldn’t drink anything for half the day! After a successful stick, she went back to sleep and was sent to recovery afterwards. She slept for additional half and hour. She woke up cranky. She took a bottle and we left, me more anxious than prior to the procedure.
The sound of a phone call you’re waiting for is both music to your ears and a sound that stops your heart. I recognized the first three digits from Children’s. This was it. After almost a year after her birth I was finally getting an answer.
“Hello.”
“Mrs. Meyers, this is Dr. Thomas. Your daughter had a stroke during your pregnancy.”
I don’t remember how the conversation went after this. His voice was a distant muffle. My mind was blow. I had never heard of such a thing. I looked at Molly, sound asleep and clung to her as I nodded and occasionally said “ok”. My daughter had a stroke. The words didn’t go together. It was beyond my comprehension. Yet at the same time, I was overcome with such peace, peace in knowing what happened and knowing that she would be ok. Molly was going to be ok. I got off the phone and called my mom. She cried.
“It’s ok. Molly is going to be ok,” I told her.
This did not change anything; finding out Molly had a stroke. This whole time we were on the right path taking her to physical therapy. Her bloodwork came back unremarkable. We didn’t have to make any changes with what we were doing. I met with Molly’s neurologist at a six month follow-up in the fall of 2011. I got to see her MRI. I couldn’t believe how big of an area the stroke affected. This big white patch affected Molly’s gross motor skills and balance and nothing else. Her intelligence was not affected. Her speech was not affected. Out of all the areas to have a stroke, she was quite lucky. I had lots of questions for Dr. Thomas. Why did this happen? Was it my fault? I had lost a baby that summer. Did I have a problem with clotting? Will it happen again? Will she walk? When did it happen? To this day, much of this is still unknown. We do know Molly will walk. We don’t know when. We may never know why she had a stroke. One good indicator may have been in the placenta. Were there clots in the placenta? After her birth, I could have cared less about the placenta. I did not pay attention. Molly has no problems with blood clotting. We know that is not a factor. I am almost positive she had her stroke at the end of my pregnancy when she slowed down. I knew something was wrong but there was no way to prove it. I could live my life with the what if’s but what good is that going to do?
Molly will be three in August. She sees her neurologist every 6 months. She also sees and ophthalmologist every 6 months. Her vision is perfect so far. She continues PT in home with early intervention weekly and at Children’s every other week. And she gets home occupational therapy twice a month. Recently, she started swim lessons. She has made incredible progress throughout her life and will only continue to do so. With the help of orthotics and a walker, she is getting closer and closer to walking on her own. She cruises furniture like a pro and loves climbing the stairs. I credit all of this to her therapists who have built confidence in Molly and truly have a passion for helping her.
When Molly was 21 months old, I gave birth to her brother, Spencer. He has been an incredible motivator for her. I credit him to pushing Molly. He is almost advanced in his development and I notice more of a drive in Molly since he started crawling around.
Molly is a very bright little girl. She loves her kitties, swimming, reading, and singing. She knows her ABCs and there is no tricking her with the flashcards. She remembers everything which is both good and bad!
I believe that God has great plans for Molly. She will go on to do wonderful things whether it’s inspiring others, helping others with special needs, or being a loving mother. I am excited to see how her life unfolds and I will forever be grateful that she is my daughter. Molly has taught me that with determination you can do anything you put your mind to. She has shown me that nothing can hold you back. To say I am proud of her would be a huge understatement. Thank you God for giving me my Molly Kathryn.
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