What I know for sure is that I don't know anything for sure. Parenting is tough. It is not only the kids but all the other stuff: marriage, jobs, family, friends. When you have a child who has special needs, it’s super tough. We try our best and learn as we go. Every day that I look into my daughter’s big blue eyes, I see that life is miraculous. Despite all the odds, she is the girl who lived. She has made us the people we are today, and I am thankful for that.
Before the NICU
We were already blessed to be parents of two healthy boys, Micah (7) and Ezra (5), when we decided to expand our family. However, after two failed pregnancies and an ocean of hurt, we were shocked to find out that we were pregnant yet again. We did not expect it, and despite our attempts at optimism, deep down we feared the worst.
At every doctor’s appointment, we held our breath wondering about her fate. We were still grieving the loss of Baby Margaret, and as a defense mechanism, I thought this pregnancy would have the same result. It sounds terrible, but my heart was so sad.
About halfway through the pregnancy it was determined that she was small for her gestational age, which progressed to Inter Uterine Growth Restriction (IUGR). Finally, at 36 weeks, my doctor told me she was not growing anymore so it was best to schedule an induction. She would have a better chance of survival outside of my uterus than in. I felt like such a failure as a mother. I felt like my body had failed her, had failed all of them. But we chose to move forward, because that’s what we do.
During the NICU
Despite the very complicated and tenuous pregnancy, Adele Maryrose Percell was born on December 1, 2015. She weighed in at 4 lbs 8 oz. Unlike my previous 2 children, she did not cry when she was born. She never made a peep. She was very still, but she was breathing. So I thanked God.
Adele was sent to the NICU because she had multiple conditions which required closer monitoring, and we ended up spending several milestones there. It was in the NICU that Adele met her brothers for the first time, as well as her Gram and Grandpa Jiddo. During that time I never left the hospital. I hated leaving her side at all.
Fortunately, we are grateful to have such a wonderful hospital where we live. The Children’s Hospital of Illinois runs like a well oiled machine. The specialists and nurses who checked on Adele spent time with us, answered all of our questions, and even gave us some tough love when we needed it. I will never forget one time when I was especially down, feeling like I was failing at my one job – to keep my daughter alive – when a NICU nurse looked me straight in my eyes and said, “Honey, you’re no good to her if you don’t rest. Go lay down. I don’t care if you fall asleep or not.”
Without the care and guidance of those nurses and specialists from the NICU unit, we wouldn’t have any good memories of this experience.
After the NICU
We were discharged from the NICU and made it home in time for Christmas, but our worries and struggles did not end there. They still haven’t ended. Adele continues to be evaluated through early intervention and has weekly therapy sessions. Through it all, Adele continues to be our little fighter. From the moment that she was conceived, she had to fight to survive. She hardly had any placenta to nourish her, and yet she lived.
The girl who lived, Adele Maryrose, is a true miracle. Even when times are tough and the challenges are great, we draw upon her strength to get us through. As one of the NICU nurses said, “Tiny but mighty!” And that is absolutely what she is. Even writing this entry has made me realize how far we have come, and I believe now that we are going to be okay.