Clare’s Story
“Our Clare-rity”
All my life, I have always dreamed of witnessing a miracle. Never could we have imagined that we would actually create this miracle. On Tuesday, December 11, 2018 at 9:55pm our daughter Clare Kimberly Hutton entered this wonderful world. She has been a living miracle since conception and on that cold December night, her journey was just beginning. To understand just how strong this amazing little warrior truly is, let’s start on the day she began fighting for her right to live.
On Saturday, November 24th, just 17 short days before the sudden arrival of Clare, my husband Dan and I were on our way to our OBGYN’s office. We were relieved that our office offered Saturday morning appointments because we both held extremely busy schedules. We both taught at the high school level…I taught social studies and he taught math. I also worked as a social studies teacher for a local night school program and he coached after school as an extremely passionate coach for volleyball. We were also halfway through the pregnancy of our very first child. We already knew she was a wonderful girl and had announced her name to the world for I couldn’t keep a secret! On that particular Saturday, as we made our way down Algonquin Road into Schaumburg, I was using the commute time to try and get Dan excited about going to Woodfield Mall after our appointment to begin Christmas shopping. I also was in sheer anticipation for we were going to be putting up our Christmas tree that night and decorating our home for the holidays. That day began as normal as normal could be….we had no idea that our lives would be changing forever within the hour. To sum up our visit in two words….Severe Pre-Eclampsia. My blood pressure that is always cool and calm had skyrocketed to a hyper 190 in a resting position. Our doctor told us to drive directly to St. Alexius Women’s and Children’s Hospital in Hoffman Estates, Illinois. Internally, I felt completely fine, though emotionally I began to crumble. I didn’t understand what was going on….I hadn’t read that part of that “Expecting” book yet! Pre-Eclampsia….what was that?!?!
Fast-forward to Tuesday December 11th. We’ve passed through the 17 days I spent practically tied down in bedrest. Through the nightmares and scares. Through the many magnesium treatments that made me feel like I was burning internally. Through all of the steroid shots, so many blood draws that I lost count, blood pressure checks every 3 hours, tip toeing the line of two stokes, and constant seizure watch. Through the headaches that felt like death and the black spots that clouded my vision. Through the unexpected death at home of my beloved Siberian Husky Dakota who passed away while I was hospitalized and I never got to say goodbye. Through the heartache and worry. Through the feelings of giving up as my body felt like it was giving in. Through every obstacle it took to bring this beautiful baby girl into the world and give her a chance to live. I was fully prepared to exchange my physical life for hers, if it meant that she would be okay. Though I didn’t want to imagine not being able to be present in her life.
At 9:55pm, via an emergency C-Section, I heard the greatest sound, equally great as my husband’s “I do” on our wedding day….Clare came out crying. And kicking. And swinging her arms. I saw her first breath of life as she was presented to me over the blue screen. That’s all I saw. There was no holding. There was no introduction. There was no time. The incredible St. Alexius NICU team was waiting on deck and they were going to be Clare’s first human contact. I had just given birth to her, but these were the people that would save her new life. At that point all I could focus on was her beautiful face, though that moment lasted a few seconds, it will remain in my heart forever. I was a Mom. And best of all, I was Clare’s Mommy. Clare was born at 26 weeks gestation, or 3 months and 1 week early. She had missed her entire third trimester inside me.
Minutes felt like hours and weeks felt like days. Clare’s journey was like traveling down a completely unpaved, winding road with the biggest pot holes you could imagined, and dust and dirt kicked up at every step. Some moments we could see the road, other moments we couldn’t breathe. Her parents were by her side every single day for 117 days. We went home to sleep at night, only to recharge and keep our house afloat. My husband Dan continued to teach and coach, which kept us feeling a touch of normalcy, our health insurance maintained, and our finances going.He would rush to our sides on his lunch break, right after school, right after practice, and for entire weekends. I don’t actually remember that man sleeping from November to April. He was our superhero. I had no choice but to suddenly quit teaching at my school and stay by Clare’s side. My health was not doing well, but more importantly it was the only realistic option to keep this child physically and emotionally on her journey. We wanted her to feel constant love. And our love she felt. She felt our love through her pain and fear. She felt our love through her PDA Ligation for her heart that resulted in her having heart surgery within the first month of life. She felt love through 31 blood transfusions, countless blood draws each day, anemia, viruses, three failed breathing extubations as we struggled to transfer from the ventilator to oxygen assistance, Retinopathy of Prematurity (ROP) eye procedures in which she maintained stage 1 in her left eye, and while navigating her lung condition which is known as Broncho Pulmonary Dysplasia. Watching our daughter crash twice and turn blue because her breathing tube was knocked out and so many other terrors that kept us up at night. Little did we know that the nightmares we lived were actually dreams come true because we were still living. We also loved her through her mastered milestones. When she first opened her eyes, first smiles, the first time she was able to come off the ventilator, first feeds, every diaper change for that meant her systems were working, and the bond she shared with us. We also made sure to not miss a single holiday that happened while we were in the NICU. As a family, we celebrated her very first Christmas, New Years Eve, Valentines Day (also her Dad’s birthday), St. Patrick’s Day (she is part Irish) and found any other reason to celebrate anything we could. The nursing staff and doctors became like family to us as they helped to support us through her journey and we helped them in any way we could. We couldn’t have emotionally or physically survived ourselves without our incredible families by our side, helping by any means. As the days pressed on, Clare continued to grow stronger, sassier, and more confident. She soon found her voice and we could hear her cry on her own accord. She soon found her breath and was able to move down to lower levels of required oxygen. We started to notice that we were allowed a majority of her daily care and the staff would continue their medical assessments. We started to see her room become lighter and the door of the NICU lobby become more prominent. We started to feel home becoming closer. And then we were able to reach out and touch it.
Clare was discharged on Saturday, April 6, 2019. It would be the sunniest Saturday of our lives.
Today, Clare is a moderately healthy, extremely happy 10 month old, corrected age of 7 months. She lives in her home in Hoffman Estates with her parents, her puppies, and so far a good bill of health. Clare will have her BPA lung condition until her lungs fully develop at the age of 6 years old and then we will be able to assess, if any, effects remain such as different forms of asthma or breathing conditions. Clare is an incredible kid with an even bigger personality! She enjoys long walks around the lakes by our home, her favorite color is red, trips to Michigan (she’s half a Michigander), her favorite foods are sweet potatoes and prunes, and her favorite toy is a stuffed dog, respectfully named “Dogg”. She is growing and changing so much on a daily basis, and our family is beginning to find our new normalcy. Even though we still have weekly doctor appointments, she continues to defy odds and impress her medical staff, not to mention her parents in everything that she does.
We never imagined we would give birth to a miracle, let alone help create the strongest person we would ever meet in life. Clare has taught us so much about what it means to be a human being and to live a valued life. As her Mommy, I call her impacts on life and her journey, “Clare-rity”. She has taught us to cherish each breath of life for it truly is a gift. She has taught us within her smile to always find the happiness. She has taught us in her spirit to never give up, or give down, or give left, or give right….no matter what. Keep going….keep surviving. Give it everything that you have and then when it feels like there’s nothing more to give, take a deep breath and dig within yourself. Clare fought for her right to live this life and there’s no doubt she’s here in this wonderful world for a very important purpose. It’s an honor to know Clare, but it’s even more of an honor to be her parents!
All our love, Clare Bear!
Kimberly & Dan Hutton (Mommy & Daddy)
Clare & family are to be recognized during the Playing For Preemies match for Lewis Women’s Volleyball on October 25th, 2019.