Makenna Grace’s Story
O Warrior Stories
Written by: Mariah Burkett
Makenna Grace was born on May 10, 2024 at 5lb 8 oz. What a crazy journey her life has been so far. At 16 weeks I went for an ultrasound, I was so excited to see my baby and how far along I actually was. I’ll never forget the doctor’s words “Your baby has something called an omphalocele and it’s going to be big". It contained her liver, stomach and most of her bowel. I immediately started crying because there’s so many questions but no answers. It’s kind of a live-in-the-moment diagnosis, so many uncertainties and so many things can change in the blink of an eye. I immediately dove into research. I educated myself some would say an unhealthy amount. I wanted to know all the good and bad and be prepared for every possible thing. Justin and I spoke and we decided that no matter what we would see this out to the end. I was sent to Magee Womens Hospital in Pittsburgh, PA and that’s where I would have more in-depth ultrasounds to keep an eye on everything. Her heart was a little slanted but other than than completely normal minus the omphalocele. Different doctors kept asking us if we wanted to terminate because her O was growing to be bigger than her and the outcome was unknown. It was overwhelming not knowing what was right or wrong but all we did know was this baby deserved a chance no matter how big the fight would be. We did decide to decline the amniostesis because no matter the outcome we would love her no matter what. We did the basic genetic testing but everything did come back negative. 28 weeks into the pregnancy my cervix measured .9 mm. They gave it two weeks until my daughter would be born. I met with a comfortability doctor because there was no way she would live with the size of her O compared to her. We were prepared for the worst. Bedrest and progesterone played a big role on her chance of life. My cervix grew back to above 2cm and she stayed in until 36 weeks! Natural birth wasn’t an option due to the chance of a rupture and with the liver being inside it was to risky.
The plan was to have a scheduled c- section at 37 weeks but Makenna had other plans and entered the world a week earlier. She was incubated and life-flighted from our local hospital down to Childrens of Pittsburgh at only 4 hours old. Her O was huge and had to be in a Silo bag and tied above her just for support. We did all the genetic testing after she was born though just to make sure there wasnt anything we were missing, everything came back negative. Her omphaolocele has been determined to have no cause. All of her genetic testing came back negative. Her first month of life she had a c-pap machine to assist with breathing, Her PICC line for her medication and her feeding tube. We could only touch her through the little holes in the side of the incubator and hold her little hands. We were doing the paint and wait method until the biodine was actually causing her thyroid problems. Now it is just wrapped with some gauze and an ace bandage. She tackled the NICU like a boss. She was feeding from a bottle after a month and a half of life and she was moving in all the right directions. She got sick and had her first spinal tap. Never anything serious just the common cold was the outcome. She wasn’t ready to come home yet but outgrew the NICU setting. We decided the childrens home was the next best step. She made it there 9 hrs and got rushed back to the hospital due to a high fever. Once back there they did a spinal tap and it came back nothing. Her fever was actually due to the O not being wrapped correctly and it being too wet inside. After about a week she went back to the childrens home and has been there since. Her O started a little bigger than a softball and it has since shurnk to smaller than a baseball. I can cup it into my hand and it now had about half skin coverage. Feeding is still our biggest obstacle. She gets tired and her respiratory is comfortable at 80-90 which is considered unsafe to bottle feed. Everyday we work towards tackling the bottle but for now we’re taking it slow.
She’s right on track with everything a "normal" baby would do. Shes holding her head up and kicking her legs. She’s grabbing and holding onto things and she’s babbling away. Makenna came home around Thanksgiving 2024 and is taking a bottle like a champ. Makenna is a warrior and everyday she makes us so proud with everything she is overcoming. I don’t know how I would have gotten through if not for all of the support I found through the O Warrior and MOO Facebook Page and I hope that people read her story and decide not to give up. Don’t get me wrong, nothing about this is easy, but if she fights we fight.