#30DaysofHope Day 21- Stacy
It’s hard for me to believe that at the end of this month, we will have been home from the NICU for one year!
On the morning of July 3, 2019 I woke up with some cramping. It seemed out of the ordinary, but otherwise I felt fine. As I went through my morning at work, the cramps worsened. I had a call into my doctor and before getting a call back, I stood up to go to lunch and my water broke. So many thoughts and emotions came over me, but I had no idea what the next few days would bring. I went to the hospital and was hooked up to monitors, given steroid shots, and was honestly told they weren’t sure if my baby would survive. A few hours later, I was transferred to UH Rainbow Babies and hooked up to more monitors and the hope at that point was to keep my son in the womb for as long as possible.
At 5:27AM on July 4th, our son Akira was born at 23 weeks and 3 days weighing 1 lb 5 oz. The Neonatology staff took him the second he was born and thankfully my husband got to be in the room with him. The next few days, though I feel hope was always there, we had the roller coaster highs and lows of the NICU. We were told our son had a 35-50% chance of survival due to how early he was. On his second day of life they found he had a grade 4 brain bleed and the percentage of survival we were given the day before was now non existent. I can’t put into words how we felt hearing that, but we didn’t want to give up on our son and we told the doctors we wanted to do whatever we could for him.
The next few days were filled with so many emotions, high and lows that could change from minute to minute and hour to hour. We spent as much time as we could by his side and learned so many medical terms that I never thought I would need to know about. I’m not really sure there was ever a day that I finally felt like we were out of the woods, but we always had hope. When he was one week old, I finally got to hold my son for the first time and it was the best feeling ever. Not at all what I had imagined holding him for the first time, but it was amazing, wires, tubes, nurses and all.
We spent 148 days in the NICU. The journey included lots of medications, blood transfusions, ventilators, oscillators, CPAP, high flow oxygen, low flow oxygen, PDA closure surgery, hernia surgery, chest X-rays, echos, head scans, feeding tubes, bloodwork, and lots of beeping monitors. Our son fought hard every single day! We were surrounded by wonderful doctors, nurse practitioners, and amazing nurses that cared for him every minute of every day. We also had amazing support from our friends and family and each other. All of these loving people helped us get through each and every day.
On November 29th we went home on oxygen and a pulse ox monitor. And just like he did during our journey in the NICU, our son continues to fight every day. He is now monitor and oxygen free. We have lots of doctors appointments and therapy sessions, but he continues to make great progress. He is absolutely amazing, a true fighter, my super hero!
No matter what your journey is in the NICU, or how long or short of a time you spend there; you are strong and will get through this. Never lose HOPE!