Author: Carrita Flie, mother of 26-weeker Isaac
Finding out that I was pregnant again was a bit scary. I had gone through two previous losses and because of this my pregnancy was considered high risk. I was monitored 2-3 times a week at two different hospitals. During a routine appointment at 21 weeks, it was discovered that my cervix has shortened to 1 cm. I was sent to the main hospital to receive a cervical cerclage. I was told that if my water broke during the procedure my son probably would not survive because I was only 21 weeks. Thankfully, the procedure went great and I was sent home within twenty-four hours. After five weeks with the cerclage I found myself in full on labor. Again, it was after a routine appointment that I realized I was having contractions every ten minutes. Upon arriving at labor and delivery I was told that I was 5 cm dilated and my son’s foot was pushing through. I was prepped for an emergency c-section. There are no words to explain what I felt in those moments. I could have never been prepared for what I was about to face. I nearly lost my life giving birth to my son, but I would do it again just for him.
Isaac spent 116 days total in the NICU. Things started out rocky for him being less that two pounds and so fragile. He received more than ten blood transfusions; nearly lost his life due to RSV and pneumonia at 34 weeks gestation, given less than ten minutes live at one point and showed the doctors that miracles were real by being discharged from the NICU like a warrior! The feeling of bringing your child home after being told you would never be able to, cannot be described! After 116 long days I was walking out of the hospital with my LIVING son!
After Isaac was discharged from the NICU he was diagnosed with retinopathy of prematurity, bronchopulmonary dysplasia, tracheomalacia, laryngeal cleft and an encephalocele. The scariest diagnosis for me was the encephalocele. This is a very rare neural tube defect and something I had never heard of. Between Isaac’s eyes; there was a portion of his brain pushing through an opening in his skull. I had so many thoughts. What does this mean for my already fragile baby? Would he live? Would he have a normal life? I needed answers! God blessed us with an incredible neurosurgeon who eased my fears from the moment we met him. At thirteen months old Isaac underwent a six hour brain operation to repair his encephalocele. This procedure called for a craniotomy which left him with a metal plate and seven screws on one side of his skull. Isaac has also had his tonsils and adenoids removed due to severe sleep apnea. His most recent operation was a laryngeal cleft repair. He had a level two cleft which was causing severe choking and aspirations. Due to his lungs suffering so much damage in the NICU, Isaac always struggles with anesthesia. He has difficulty remembering to breathe after waking up so, for us, no matter how minor the procedure is, we are always admitted to the Pediatric Intensive Care Unit for recovery.
This entire journey has taught me a few things:
I am unbreakable
God loves me so much that He gave me the most amazing miracle to raise
I am never alone on this journey!
Isaac is an incredible two year old who blows my mind daily with his growth and development. He currently receives physical therapy, speech therapy and feeding therapy. I get so much joy watching him defy the odds and prove to everyone he meets that he has a purpose! He was placed on this Earth to do the unthinkable and I am extremely grateful that God chose me to care for him on this side of heaven. If I could give advice to a current NICU mom, I would say this: Release the guilt that you are feeling right now. You are not to blame for your sweet baby’s early entrance. I would also say that you must take this journey one day at time and allow yourself to feel whatever you need to each day. This is your unique journey and it cannot be compared to the next mom’s. Lastly, know that there’s an entire army of NICU moms waiting to hold your hand and help you through this! Don’t ever be afraid to ask for help. We have to get through this together!
You can follow Isaacs journey and support his mothers subsequent non-profit work on Instagram by @raisinglittlemiracles.