I am Quinn’s mom…that means I am a teacher, a physical therapist, an occupational therapist, a speech therapist, a service coordinator, a pharmacist, a doctor, a cheerleader, and an advocate…..but most of all I am Quinn’s mom.
All of these roles weren’t completely foreign to me, as I am a former Early Intervention Practitioner, and a certified RDI™ Consultant; however these roles were foreign to me as a mom.
My husband Brian and I were thrilled to find out we were having a second daughter. The dreams and visions of the future for our family of 4 were multiplying by the day! Our oldest daughter Reagan, now 3, was beyond excited to have a baby sister. I finished my last day of work on August 25th, and to my surprise Quinn Riley was born on Friday, August 26,, 2011. Three weeks early, but a beautiful, healthy baby girl was now in my arms. I had a very “normal” pregnancy and a very “normal” birth. Quinn had swallowed some meconium, but she was suctioned right away and was fine.
We came home on Sunday, August 28th. That night there were 2 or 3 times when I felt like Quinn was having trouble breathing but only for a few seconds at a time, then I thought she was constipated as her face would turn red. I mentioned it to my husband, but then I quickly discounted my concern and thought I was just a bit anxious having a newborn in the house again. Another incident happened again, where I thought she was having trouble breathing for a few seconds, so I tried to call the doctor, just for reassurance. Of course it was a Sunday night and in the middle of a hurricane here, so there were power outages everywhere, therefore not allowing me to get through to anyone. I did finally track down a doctor at the hospital where Quinn was delivered. The doctor assured me that I just needed to suction her nose, because she had swallowed some meconium and it would take a little while for it to work its way out. Little did we know, the next day our whole world would change….
These little episodes happened a few times the next day, each time it seemed like another symptom would be added. The final draw was when I was feeding Quinn and her face turned red, she turned her head to the side, her arms went straight out in front of her and her eyes deviated to the side. Something was not right. Trying to stay as calm as possible for my then 2 year old, my dad came over to stay with her and my husband and I went to the E.R. with Quinn. Within a ten minute car ride these “episodes” occurred several times. We were immediately rushed back to a room where doctors and nurses started tearing off Quinn’s clothes, hooking up wires and poking and prodding at her. Quinn didn’t cry at all. Complete fear and panic overcame my husband and me. Almost immediately the doctors and nurses confirmed that Quinn was having seizures. Quinn had a CT scan and a spinal tap. Shortly after, the doctor told us they wanted to transfer her to Children’s Hospital of Philadelphia. When we heard that, we again panicked. This must be serious if they are transferring her so soon. After a few hours Quinn and I were on our way to CHOP in an ambulance and my husband drove behind us.
When we arrived at CHOP, Quinn was immediately hooked up to a video EEG. This was supposed to be a 24 hr EEG, but turned into a 72 hour EEG. The doctors wanted 24 hours seizure free before removing the EEG. Another spinal tap had to be done, which was heart breaking. Several blood tests were done in the meantime and several meds were given, as well as a NG tube being placed. Quinn was so sedated from all the medication on top of being only 3 days old, she could not stay awake to feed on her own. We had an amazing nurse that we will never forget. My husband referred to the head neurologist as “Dr. Doom and Gloom”…that’s exactly what he was. After being in the NICU for a week we still had no answers, but the seizures did seem to be controlled. At this point Quinn was scheduled for a MRI, which the neurologist told us he anticipated that the MRI would be fine (no concerns, but no answers).
We had a family meeting with the team of doctors when they showed us Quinn’s MRI. The rug was literally pulled out from under us. Everything is a blur, but what I won’t forget are the words “Polymicrogyria, brain abnormality, severe developmental delays, may not walk, talk, feed on her own, may not be able to live with us, they do not know what her quality of life will look like”. I really cannot even put into words how we felt that day. There were many tears shed, but we did not have a lot of time to fully digest or process what this meant for our daughter or our family. We were purely in survival mode and trying our best to have some kind of normalcy for our two year old daughter. My husband, Brian and I took turns staying overnight at the hospital and coming home. There was always one of us with Quinn and one of us with Reagan. We even managed a few family sleepovers when all three of us would stay overnight at the hospital with Quinn. We are blessed with an amazing family and amazing friends, who were so helpful in so many ways; caring for the big sister, making things fun for her, many hospital visits, meals, etc.
Quinn’s initial NICU stay was for about 3 weeks. We finally got to go home (again) as a family. Quinn came home with an NG tube and on 3 seizure medications. Unfortunately our home time only lasted for one week, before she was re-admitted because of break through seizures. This was a “short” hospital stay, about 3 days (but any hospital stay is too long). We managed to come home for about 2 weeks this time before returning for yet again another “hospital sleepover”.
Where we are now:
HOME!! Quinn has been seizure free since October and down to two seizure medications. We are currently weaning another medication and hope to be down to one medication. Quinn no longer has a NG tube and eats almost anything. She has received Early Intervention services since December (due to a wait list). She has PT 2x/week and OT 1x every other week (soon to be increasing to 1x/weekly). Our PT and OT are wonderful! We had started Interactive Metronome last spring but have put that temporarily on hold due to scheduling and insurance complications.
I know I am biased but Quinn is the happiest baby ever!! Her smile is contagious!! She is extremely social and she is continuing to make steady progress – not always fast progress but steady progress. Quinn can sit independently; rolls over in both directions and holds objects, says “mama, dada, nan, go go go, pop pop pop”. She babbles various sounds. Her receptive language is also emerging. She will clap when we say “yay”, she will put her arms up when we say “touch down”, she will wave when we tell her to say “hi or bye bye”. She is trying so hard to crawl. She will get it, I know she will. We do not want people to look at Quinn under a microscope. We are well aware of her delays and while we work extremely hard everyday to guide her in progressing in these delays, we choose to embrace what she can do. She can do a lot! After all, we were told she may never do any of the things she has already mastered. She is the hardest working baby I know and seems to enjoy all her new discoveries. While I do not know exactly what the road ahead looks like for us, I do know it will be great. She is just a delight to be around! Besides myself and my husband Brian, Quinn’s big sister Reagan is her biggest fan. Quinn and Reagan just adore each other, which is beyond heart warming to see! Quinn has a best friend for life in her sister. And while we have taught Quinn, she has taught us….she’s taught us about love, laughter, strength, and determination…and I’m sure she has more “lessons” for us along the way.