About Gunner

I remember the day I found out that I was pregnant. I was shocked, happy, ready to tell Cody. Cody works nights so when he came home that morning I told him. I was going to wait to tell him and do it in a cute way but I just couldn't wait lol. I told him, he almost didn't believe me! I showed him the test and automatically said that he was happy. I told my mom first, then my grandma and grandpa, then Cody's mom and step dad. Everyone was shocked also but happy. I was in my sixth month of nursing school when I first found out. I eventually told everyone in my class as well and they were extremely happy too! The months went by and Gunner got bigger and so did I! Every doctors appointment Gunner was right on track or a week ahead on all the developments. We did a 3D ultrasound and it was so neat seeing our baby for the first time!

We ended up having two different baby showers, one thing you will find out, is that both Cody and I's families are the most generous, giving, caring people I know.

 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!

After graduation came the boards test. I scheduled mine for early December, because my due date was December 17th. But when I started my weekly doctors visits, the doc said I should probably reschedule. So I rescheduled for January 4th, 2012. In my spare time waiting for Gunner to come (I was outta school and studying for my boards) I would get so bored and impatient while Cody was working two jobs 6 days a week. He is the most giving, most self less person that I know. But I would take pics of my ever growing belly and Cody and I too of course!

It was Tuesday, December 13th, 2011. I woke up that morning having cramping feelings. I had been feelings these since Thanksgiving Day so I didn't think much of it. But it would usually come and go, and this time it was persistent but not regular. I text Cody that morning as he left for his second job during the day and said "If I keep feeling like this, we might just be going to the hospital!" Sure enough, right at 5:00 that evening when Cody walked into the door, the pains started getting more intense. I was timing them and they were starting to become regular. I called the OB and he said to come to the hospital for "monitoring" if it got worse within the next 30 minutes. I did NOT even make it 15 and we were already in the car. I was hurting so bad that I could hardly walk once we were walking into the hospital.

We checked into the labor and delivery floor about 6:30 pm, we weren't even there an hour and they decided to keep me. I was so excited. Cody called all our family and text all our friends to tell them the news, Gunner was going to be here soon! My labor went by really fast, I was a 5, then next check I was ready to push!

                                                       My mother, Debbie and I

                                                      Shelly, Cody's mother and I

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.

Cody went right away to see him. While he was gone, the NICU physician, some nurses, and a nurse representing another hospital's NICU came in. They told me that Gunner's feet, hands, wrists, ankles, and parts of his chest a torso were raw with no skin at all and they had to put in an umbilical line. I didn't know what to think. They said that he needed to be transferred to another NICU still in Tulsa (thank GOD) that had a higher level NICU and he would be transported within a couple hours. But honestly, the main reason was because NOBODY, no doctors, nurses, residents, anyone knew about EB or what was wrong. THAT is why I want to raise awareness, so that no one else has to ever have that horrible feeling about their own child in their heart. All I could think of was my poor, helpless son.. They transferred me to an actual room and Cody came back. They had already told him the news. Cody and I just stared at the floor, crying. They told us that they would bring him in to see us before they left. But I still just wanted to hold him.

My baby was LEAVING ME. He was just born. Why did this happen? Did I do something wrong? My OB told me he had never seen something like this before. THAT was shocking and scary. I didn't sleep at all. I had to wait and wait for the next morning to come around for my OB to make his rounds. He came by at noon and told me that I would be discharged so that we could go to the other hospital to see Gunner. I was so happy, but still hurting and slow. 4 o'clock came around and we finally were able to leave. We rushed to the other NICU, we got to the floor and we weren't allowed to go back at first because the pediatric dermatologist was in the room with Gunner. They finally called us back, we walked in and I looked at Gunner and started balling.
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.

The NICU there was so awesome, every baby there had a private room so we were free to stay over night. The nurses were all so nice. One nurse in particular, Lindsey, has gone above and beyond the nursing scope of practice for our family and STILL to this day texts, emails, or calls, to check in on our boy. We went home to get some clothes and things to stay, and I didn't dare to read the DEBRA website. The next day our family was there once again, everyone was telling us all of these things they had read on DEBRA. My family knew more about my sons diagnosis than I did. The next night I brought the courage up to read on it. I saw the pictures of the "butterfly children" and just started balling. I cried for three hours straight. Is my son going to walk, run, play, get dirty in mud, be a regular boy? Over the next 11 days during our stay in the NICU, we learned how to care for Gunner, protect his skin, bandage him, and lance blisters. The nurses and the nurse practitioner were in contact with Stanford University and Cincinnatti Children's Hospital for Gunner's care. (These are the other two EB Clinics in the country). Even this new NICU had no idea of what to do. During dressings Gunner and I both would just cry. He would just scream in pain. I could hardly look at his wounds. Shelly (Cody's mother), came in to help us with dressings every time. She jumped right in with us. It is a three person job for Gunners dressings. One to keep him calm and sing to him, one to hold, one to wrap. At first dressings took three hours. Now, four months later, we do it in 45 minutes, bath included. They took a skin biopsy in the NICU and sent it to Stanford University in California to determine what type of EB Gunner has. We went home still not knowing, but found out a while after we were home that he has RDEB (Recessive Dystrophic Epidermolysis Bullosa). You can find out more information about RDEB on the About RDEB tab, or click on the side link for 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 enance17@gmail.com. I would love to talk to you about it!  Thank you for reading!