I had a totally healthy and uneventful pregnancy. Nursing school graduation eventually came and I was 32 weeks along. But I was up there with everyone else, in my white scrubs waddling on stage!
I only had to push thirty minutes and Gunner was here on December 14th, 2011. 12:37am, 7lbs 13 oz. He was beautiful. He looked really red but I didn't think anything of it. Cody got to cut the cord and they put him under the heat lamp. He wasn't breathing at first. He had to be intubated for what seemed like a LIFETIME! He finally started crying, but they still didn't bring him to me. Something was wrong, very wrong.. Gunner's face had a raw spot on his right cheek, parts of skin on his lips were missing, and some scratches on his head. They wouldn't let me hold him, they took him immediately to the NICU.
The dermatologist said your son has a genetic skin condition called Epidermolysis Bullosa or EB. That was it right there. Everything he said after that I didn't comprehend. I thought to myself, "epidermis means skin, lyse to kill, bullosa is blister... Oh my Lord." As soon as I heard that I just knew that I would dedicate every possible minute to the care of my son. I was even thinking about not taking my boards test, I didn't think that there would ever be a possible way for me to work. (I did take my boards on January 4th and passed. I am now a Licensed Practical Nurse for Oklahoma) The nurses and nurse practitioner were also in the room. My first question was is there a treatment? Is it lifelong? No and yes. I automatically started crying. Gunner looked in so much pain. They had him on morphine. I walked out into the entrance of the NICU and just stood there. My family was out there, Cody's family, everyone was there waiting to see our baby. But I couldn't even muster up words or courage to go out there and tell them the horrible most devastating news we had just got. SO Cody went out there. Automatically my mom and Shelly came back with Cody and just hugged us both. We were just so lost. The dermatologist gave us a piece of paper that had www.debra.org on it. He said this was the foundation website for EB.
www.debra.org. Because we needed so much help in the beginning, we moved in with Shelly and Cody's step dad Jeremy and Cody's brother Daylan and sister Paige. We had our own two bedroom apartment with a nursery completely ready for Gunner. But it was in another city about 30 minutes away from Shelly. Since she was the one that helped us in the hospital, we would need her every dressing change. For her or us to drive back and forth every other day (sometimes we do as needed dressing changes every day) was just unreal. It was heartbreaking to need someones help with the care of my own son. I mean, I am his mom. How do I not "know" how to take care of him on my own. But, this way we are closer to Shelly and my family is also A LOT closer to us too. We were able to come home on Christmas Day 2011, what a wonderful Christmas present! Jeremy is currently building us our own house in the bottom part of their land. It is almost up and running!
There are only a few places in the country that know about EB, one being in Colorado. We recently went there for Gunner's initial visit. They have an interdisciplinary team there made up of pediatrician's, PT, OT, geneticists, anesthesia team, wound supply team, pediatric dermatologists, etc. They recommend that we come back to the EB clinic at the children's hospital every 6 months. Everyone up there said that we were taking wonderful care of Gunner and that he looks really good. When I hear people say that I can't help but to feel like there is STILL more that I could/should be doing for him. I don't know if that is the "mother" thing coming out in me or if there truly is something more I could do for Gunner. Right now there is no cure for EB, but doctors are doing research and really trying to find one. I pray to God every day that we find one soon. But I know that when God sees fit, he will present it to us. Gunner is now four months old and the best baby. He has changed my life and Cody's in so many ways. I know that he is special and God blessed us with him for a reason. My life is complete with Gunner in it. I love him and Cody so much. In the beginning I had so much anger and hurt built up. I didn't want anyone doing any kind of fundraiser, benefit, or anything to help. I think that stemmed from "I'm his mother and Cody is his father and we need to be the ones to take care of him", but that has since changed. I am a lot more open to explaining Gunner's condition. We are starting to get asked more in public about why Gunner has bandages, or they say, "What happened to your baby?' I tell them in the most simplest possible way, and most people are very understanding but still curious. Which I don't blame them. If before I saw a baby wrapped up like Gunner is, I would have been curious myself. My faith has really been tested, but I KNOW that if God leads you to it, He will see you through it. That is what I keep telling myself. I may not know the reasoning for this, but maybe it is to bring people closer together? Closer to God? To soften someones heart that may not have been so caring before they met Gunner? I know that Gunner has done all of these things already. He is our little miracle. If hearing about Gunner or seeing him makes someone be just a little more thankful for their child, love them a little more, then I know that we have done something right. I know in the future there is a possibility that we may have to make some hard and life changing decisions for our son. But those are our decisions. We are Gunner's parents and although people may think that we are or aren't making the right decision, it is up to us. People may have an opinion about what they may do or they may not decide to do, but in all reality, you never know what you would do until you are put in that situation.
With Gunner's type of EB there is a lot of fusion that can happen because of the way that the skin heals. Currently, we are fighting fusion of Gunner's big toes and second toes. Gunners tongue is fused to the bottom of his mouth as well. His mouth and feet are the worst areas for him. Some special things that we do for Gunner and his care is cutting the elastic out of his diapers, we lube his diaper area with tons of Aquaphor for protection for his skin, He has to wear loose fitting clothes with no harsh seams with tags out of it. We cannot pick up Gunner directly under the arms because his skin will blister underneath his armpits and on his sides. When a new blister comes up, we lance it with a sterile needle. We have noticed that this Oklahoma weather that we are experiencing, with it starting to get warmer, is really taking a toll on his skin. It seems also that since he is growing and getting older, he has bigger blisters. We will get one area that is usually bad for him looking really good and then another area that hardly ever gives us problems, will start breaking out and forming a blister. I hope I have answered some of your questions/curiosities.
If there are any specific questions that I may not have answered, please feel free to email me at firstname.lastname@example.org. I would love to talk to you about it! Thank you for reading!