Magnolia’s Story

O Warrior Stories

Written by: Sam Grainger

We found out Maggie was going to be born with a giant omphalocele around 11 weeks. We were terrified and had absolutely no idea what to expect. We did lots of googling and that didn't help at all. All we could find were horror stories. That was until my mom found O Warrior on Facebook. That made it a little easier knowing she could potentially live a happy healthy life. 

Magnolia Ann Grainger was born at 37 weeks on July 22. Unfortunately because of the size of the omphalocele her lungs weren't working properly and she was placed on an oscillator and sedated for the first few months of life. The doctors and surgeons agreed that since her lungs were already compressed they weren't going to try to do a closure of the omphalocele and just do the paint at wait method.

While they were monitoring her they noticed a blood vessel in her heart that is supposed to close at birth wasn't closing. So she had a PDA on October 11 to hopefully relieve some of the pressure on her body. It didn't help like the doctors had hoped but atleast that was one problem that was fixed. At this time the omphalocele was still looking really good and started to grow a nice thick scab looking layer over it. That was exactly what they were hoping for! Finally it felt like she was heading in the right direction.

After the PDA she was placed on the conventional vent to see how her little body could handle the change of blood flow. It was great for a few days and then she just tanked. They had to put her back on the oscillator and it kept feeling like we would take one step forward and 100 back.

A month later on November 12, Maggie had a trach put in. The omphalocele was looking great, the vent was on settings we could go home on, she was stating well, we thought that was the end of surgeries and procedures until she had the omphalocele fixed. Boy were we wrong.

Then December 2, 2024 came. That morning my husband went to the hospital and they were talking about how wonderful she was doing and how she was looking and they were planning on trying to sit her up! She has never sat up and she was a little over 4 months old so that was very exciting. My husband went to work and I took the oldest to school. As soon as I got home I noticed a missed call from a number I didn't recognize. Less than a minute later my husband calls me. Magnolia's omphalocele burst. I had no idea what to expect and had no idea how to prepare myself for what I was going to see.

I get all scrubbed in and go to her little pod and I just see like 10 nurses running around with bags of blood, 4 doctors are around her bed putting pressure trying to stop the bleeding, and 4 nurses are trying to get as many lines in her are possible. All my husband and I could do was stand there terrified as we see her liver and intestines on the table. 2 of the surgeons came up to us and told us how bad this was and how they have never seen this happen. They told us straight out that they had no idea how they were going to fix it. Being told that was terrifying. She was rushed to surgery and after 7 long hours she was back in her pod. They had to cut off ALL of the skin that she had grown over the omphalocele and attached pig skin over it. She now goes to surgery every 3 days to get the wound vac and pig skin adjusted. The surgeon has told us she will not be going home anytime soon because Maggie will need to have the wound vac off and that won't be take off until her skin has fully grown over the pig skin. She was in the NICU for 268 days.

We are so thankful for all of the nurses, doctors, and surgeons that kept our daughter safe.