What a journey we have been on. This story is about my daughter, Hannah, being what we call a “24 weeker.”
It all began during my pregnancy. It was not an easy pregnancy as I was sick for most of it and had many complications.
It began on a Saturday. I was feeling worse than usual. On Sunday the severe pain started. I began having severe cramping, but when I laid down, they would subside somewhat. Never in a million years did I think I was in labor.
I was only 24 weeks pregnant. I had gone 42 weeks with my first child and labor felt nothing like this.
My water ended up breaking. It was the scariest moment of my life. I could feel her little feet sticking out of me. As I clenched my legs closed, my family and I all rushed to the hospital.
When I arrived, the doctor examined me and sent me in for emergency surgery. The next thing I knew, I woke up and I had a baby. My baby girl had been transferred to St. Joseph’s Women’s Hospital NICU from St. Joseph’s North. I was told as soon as they had a bed open and available, I would be transferred as well. Although even after I was transferred to the hospital, I was still not able to see her as I was confined to the bed. I could barely move from the surgery.
After a few days, I was finally strong enough to get up onto a wheelchair and meet my baby for the first time. When I saw her my heart melted. She was so bruised and tiny. I felt helpless.
Multiple doctors told me she had a 10% chance of survival. I was given the choice to take her off all life support, to save us all from future suffering. I immediately prayed. I felt the comfort of God and new that she wasn’t going anywhere. She was a fighter. So I was going to fight with her.
She was on an oscillator that breathed over a hundred breaths per minute into her little lungs, and as she laid there, I could see the life in her. Every day I was by her side. I would talk to her, and she would move her little arms.
She was confined to this little see-through box. She was so bruised from being taken back up through the birth canal into an emergency C-section. But as the weeks passed, her skin began to heal, and even though she was still so tiny, she started looking better and better. She was 1 pound 3 ounces, then 1 pound 4 ounces, then 1 pound 6 ounces and finally she hit 2 pounds. We jumped for joy. The milestones were amazing. I was so proud of my little girl.
The doctors explained to me she would have complications. They were still uncertain if she would survive. She would probably not be able to walk. She was most likely going to have severe cerebral palsy. Nothing was certain. One thing I did know was that she had hydrocephalus, which is a brain bleed. Hers was a grade level 4 and 3 on each side, serious enough for her to need a reservoir and then a shunt. We spent 124 days in the NICU. She had seven total surgeries and five of them were brain surgeries. She had retinopathy of prematurity (ROP), which is an eye disorder that can lead to vision loss, so she also underwent a surgery for that.
The four months we spent in the NICU consumed all of our lives. Every day I was there by her side praying and reading with her. From having issues with the nurses to not agreeing with the doctors to not understanding why my family and friends disappeared… I was alone with her. But I had her, and we were going to fight.
Hannah would hit her milestones. When it came time to finally hold her for the first time it was the best feeling I’ve ever felt in my entire life. Her tiny little 2-pound body on my chest was the most beautiful thing I’ve ever felt in the whole world. To feel her calm against my chest, to feel her melt into me as we were one. After that, there wasn’t a day that went by that I didn’t hold her.
I had put all my faith in the Lord for full healing and comfort and understanding. I was unable to hear the doubts and concerns around me. All I knew was that Hannah was strong and so was my faith in the Lord! The 124 days in the NICU were absolutely the hardest and scariest days of my life.
I know that throughout my journey, High Risk Hope was there for me on more than one occasion. Not only did I get two amazing bags from them because I was there so long, but I had four family dinners where I bonded with others that were going through the same thing.
After being released from the NICU, Hannah had a relapse and spent time in the PICU after her 5th brain surgery.
I definitely stand by the fact that no one really knows what we go through unless you are in it. And that’s one thing that High Risk Hope is… created and founded by women who have been through exactly what I have. And their comfort helped me get through it.