Just a few months after Karlie came home, we had an appointment with Karlie’s surgery team to discuss compression wrapping on her omphalocele. Compression wrapping is typically started on babies with omphaloceles sooner but because of Karlie’s unstable breathing while in the NICU, it was put on the backburner. Her breathing had become the #1 priority. Compression wrapping involves Ace bandages that slowly squeeze the omphalocele and compress it back into the body. This is not a fast process. We knew this going into it so we were very patient and celebrated any and all progress. We started very slowly and had to play around with how to wrap it and how tight Karlie would tolerate it. Before we could even leave the doctor’s office that first day Karlie had a huge coughing fit. She was so upset and couldn’t stop coughing. We always monitor her vent settings and we could see that she was not taking big breaths. We were not going to leave and try to drive home with her like this so we removed the compression wrap. She was instantly better. It can’t be comfortable having Ace bandages wrapped around you and squeezing your belly. The surgeon wanted Karlie to have the compression wrap on 24/7 but told us we’d likely have to work up to that. Karlie tolerated it pretty well most days but there were some days where she would be so fussy so we’d take it off. She definitely let you know when it was too tight.

Karlie’s omphalocele had kind of a mushroom shape to it, where the base was small and then it was round and large on top. In order for her organs to go back inside her body, we had to try and decrease the omphalocele’s size to be the same size as the base. We would hopefully achieve this by wrapping the bandages around the widest part of her omphalocele and then securing the wrap behind her back. We didn’t see much progress in the beginning, but we knew it was a long process so we just kept wrapping her until she could tolerate the wrap 24/7. Our surgeon told us the process could take well over a year with how large Karlie’s omphalocele was.

The idea was that as Karlie grew, her abdomen would also grow and allow her organs to settle back into her body. That’s obviously not something you want to rush. We were warned that it could negatively affect her breathing, as the compression could cause more pressure on her lungs. We could often tell when the wrap was too tight based off of her work of breathing. Thankfully it’s an easy fix and her breathing always returned to normal with the wrap loosened. We were very hopeful that the compression method would be successful but there are other options if it isn’t. Sometimes kids just don’t have enough space in their abdomen to accommodate the organs so they have to have spacers placed underneath their skin. It basically looks like big blocks under the skin. We were really hoping we didn’t have to go down that route.

After just a few months we started to see some progress! Karlie’s omphalocele was slowly becoming less mushroom shaped. We saw our surgeon once a month to check on Karlie’s progress. Our surgeon would always show us different ways to wrap Karlie based on the progress. The goal is for Karlie’s omphalocele to be completely flat before she can get closure surgery. We want it to be the least invasive surgery possible. During closure surgery, the surgeons will basically just stitch Karlie’s belly where her omphalocele was, leaving a nice scar on her belly. I’ve seen some surgeons give the child a belly button as well, otherwise omphalocele kiddos don’t have belly buttons. I wish Karlie could make that decision on her own, but I would kind of prefer the scar over a belly button. The scar will make her unique and tell the story of all she’s been through. I hope the scar will always remind her how strong she is.