When Eli was born the doctors and nursing staff in the operating room noticed immediately that he did not have any skin on his feet. While cleaning him up the skin rubbed right off of his right hand. At that point they stopped cleaning him and determined he needed to go to the NICU to be examined further. While I was being sewed up I told my husband to follow Eli to the NICU....I didn't want him to be alone. I was only able to get a quick look at our son before he was whisked away from me. At that time I had no clue how serious his skin issue was. I thought he was being taken just for an examination and that night or the next day he would get to join me and my husband in our mother-baby room like he was supposed to,
After getting out of recovery I was able to be wheeled to the NICU where I was able to hold Eli only because they wanted us to attempt breast feeding. Eli wasn't interested in latching. He thought my breasts were good pillows, not good nutrition sources. Before being wheeled away from our son to my own room, the neonatologist came by to tell me and my husband that he suspected Eli has a rare skin disease called Epidermylosis Bullosa and had to be started right away on IV nutrition through an umbilical IV which they were going to start that night. I had no idea what this disease was or how long our NICU stay would be because of it. At that point I was still under the delusion that this was all just a temporary issue and he would get to go home with us when I was discharged.
On the third day of Eli's NICU stay I finally convinced my husband to go home for the morning and afternoon to get away from the hospital. He also needed to shower. He hadn't showered in four days. I spent that morning with Eli. I finally started feeling the heaviness that my husband had been feeling. It had been three days since Eli was born and nothing that I imagined would have happened in that time frame was happening. He hadn't been able to have his newborn pictures taken because he was hooked up to an IV in his belly button. He wasn't able to breast feed because he couldn't latch and I had yet to even produce anything to give him. I wasn't able to bottle feed him because the nurses were worried that the bottle would cause him too much pain. I started feeling frustrated with the care he was getting at Kettering because it seemed like every day there was some new theory about how to feed him,,,,one day the nurse was okay with bottle feeding, the next day I felt pressured to breast feed even though neither of us could do it. One night Eli took the bottle great for me so the next day I thought I would be able to try the bottle a couple more times but was told that day that I couldn't because I would just be causing our son pain by feeding him. I wasn't able to hold his hand or touch his little toes because they were always wrapped in gauze. I wasn't allowed to put blankets on him because the nurses said it would cause too much friction on his skin or would over heat him. He had yet to get a bath or wear any clothes. When I returned to my room that day to eat lunch and get a shower the emotion hit me like a ton of bricks. I cried hysterically as the hot water poured over me. I felt like I was failing our son. I felt angry that he was unable to be treated like any other full term newborn baby. I felt confused about what was right and what was wrong for him. I felt pressured from the nurses that I had to start producing breast milk or they wouldn't attempt to feed our son at all. When I got out of the shower I stood in front of the mirror and leaned over the sink and begged to God to help us through this. I cried and pleaded to understand why this would happen to us after all we had already been through. As I stood in front of the mirror I felt the loneliest that I had felt in a very long time.
When my husband returned to the hospital that evening we were able to meet a nurse and her son who both have Dominant Simplex EB...a more mild version of the disease. Talking with them provided my husband with hope for our son. But for me, it made Eli's disease more of a reality. Both the nurse and her son looked completely normal. They had no scars on them from their skin blistering or peeling off. But hearing that our son would most likely not crawl and walk in the normal time frame was very hard for me to hear. As a mother it was like ripping apart my dreams and goals for our child. My husband on the other hand was focused on the long term abilities such as having a successful career and marriage which both the nurse and her son were able to achieve and this made him feel better about Eli's future.
The next day I was officially discharged from the hospital. We were grateful that the hospital allowed us to stay in our same room as a guest that night since Eli was still being treated in the NICU. We would have been able to stay there as a guest as long as Eli stayed in the NICU and as long as they didn't need our room for another family who had just given birth. However, that night while I was visiting with Eli after delivering the breast milk that I had finally started producing, I realized that he was not getting the best care that he could be getting. The nurse was frustrated that his dressings kept falling off of him and that she couldn't keep his pulse ox on him since his skin was so slippery from aquaphor. Eli hadn't been fed in over 12 hours because the day shift nurse said it was too painful for him to eat. After returning to our room that night I sat up for the next two hours bawling about what to do for Eli. I didn't want him to stay in a hospital where they didn't know how to care for him but I also didn't want him to be transferred to another hospital further away from where we live with no family around to stay with while he was there. My hysteria woke my husband up and he sat and held me as I cried about my concerns and fears. It didn't help my emotions that earlier in the night I had gotten on our Ipad and saw all the links my husband had opened about EB and saw a blog about a baby boy who died at 3 months old due to having EB. The overwhelming fear of losing another baby was too much for me to handle coupled with the worry about what we would do if Eli was transferred to another hospital.
When the doctor came in that next morning we didn't have a chance to discuss our thoughts on transferring Eli to Cincinnati Children's Hospital because we were told that there was nothing more he could do for our son and we needed to go where the specialist were. We agreed. It was time to seek out the professionals who are among the world's leaders for treating this disease. That day we worked with the social worker to get on the waiting list at the Ronald McDonald House since Eli was going to be in a pod with other babies instead of in his own room, but at the last minute before leaving the hospital we got a phone call stating Children's was able to get Eli his own room so I could stay in the room with him. One of our prayers had been answered and it was one less burden we had to worry about.
Eli and I lived at Cincinnati Children's Hospital from August 12th to August 28th. He was initially sent there with the assumption that he needed a g-tube since he was not eating. On the first day that Eli was at Children's, we worked with the speech and occupational therapists who got him a Haberman bottle to try out. The Haberman bottle is used for kids with cleft palates but due to the softer nipple it works well with EB kids because it creates less friction and blistering in their mouths. Eli immediately began sucking down milk when we started using this bottle. He was eating 1-1.5 ounces every 2-3 hours. He did so amazing his first two days at Children's that I thought we would get to go home at the end of the weekend. There was no need for a g-tube when he was eating so well. Unfortunately, things didn't go the way I had hoped.
On Eli's second day at Children's Hospital he got a PICC line to replace his umblical IV since he was still getting IV nutrition in addition to what he was taking in orally. Within 24 hours of getting his PICC line Eli spiked a fever and stopped eating as well as he had been. He had contracted a bacteria infection in his blood stream and in his PICC line. He was started on IV antibiotics and we were told he would be on them anywhere from 5-14 days. Over the next couple of days every morning Eli had to get his blood drawn for cultures to see if there was any more bacteria growth. The doctors informed me that he would most likely be on antibiotics for 14 days AFTER his first negative blood culture due to the type of bacteria that he was on. I was devastated. There was a possibility that we would still be in the hospital when Eli turned 1 month old and I would have to return to work shortly after getting home with him. Fortunately Eli only had bacteria in his blood cultures the first two days they were taken!
We were at Children's Hospital much longer that I had anticipated and certainly much longer that I had wanted. But while we were there we learned a lot and became more comfortable advocating for our son. We got to meet Dr. Lucky who is a world-renowned dermatologist who treats EB patients and learned how to do Eli's dressing changes with confidence. Dr. Lucky made us feel like there was nothing that we could do wrong with Eli despite what the research states is best for kids with EB. She encouraged us to try normal clothing and blankets and diapers and wipes. We experimented with different size diapers, elastic out and in of the diapers, aquaphor on the whole diaper or just parts of the diaper. Everything was trial and error but we were never made to feel as though what we were doing was wrong. Once Eli got his PICC line in we were able to bathe him for the first time....he was a week old when he got his first sponge bath. A few days later he was able to get in a bath tub and loved being in the warm water. We weren't able to put any clothes on him until his last night in the hospital after his PICC line came out but that day was the happiest day for me since he was born. My only complaint of our entire stay at Children's was how long it took for a doctor to finally discontinue his order to have a pulse ox on him at all times. The pulse ox was the biggest pain ever-it would hardly ever stay on him longer than 30 minutes before falling off and if they did find a spot it would stay on they had to move it a few hours later and could never find a new spot for it. The nurses were constantly in the room messing around with the pulse ox and irritating both me and Eli as a result. But the worst part was when Eli's skin was damaged by a nurse putting the pulse ox directly on his skin. One area was so bad it was gushing blood and the nurse practitioner thought we would have to call in plastic surgery to cauterize Eli's vein to get the bleeding to stop. Thankfully we figured out a way to wrap his arm to get the bleeding to stop and skin to heal on it's own.
While we were living in the NICU I had days where emotionally I felt strong and confident in my ability to be this precious little boy's mother and other days where I felt exhausted, scared, and angry. I only slept at home three nights in three weeks. I hated leaving our son in the hospital alone. It felt like we were abandoning him. The day we got to bring Eli home was such a happy day for me. Since we've been home it has been challenging both emotionally and physically. Alex and I have struggled to figure out a way to keep us both sane and not exhausted. I've had days where I cry all day long because I haven't been able to do things with our child that I thought I would be able to do during my maternity leave. Our days are consumed with feedings, diaper changes, and 2-3 hours of bath time and dressing changes. It seems like Eli's skin has gotten worse since we have gotten home and simple things like running out of Pamper's wipes and using Huggies has caused major issues that is taking days to heal.
We continue to request prayers for Eli and our family. We have not received the results of his genetic testing yet to know which type of EB that Eli has. Our prayer is that his is a mild form of EB and that he will not have life long effects from this terrible disease. We are incredibly blessed with the amount of support we have received from the financial donations, care packages with food and medical supplies, meal deliveries, and help with cleaning our house. Alex and I often question God's plan since it seems as though we can't catch a break anywhere. But at the same time, God lead me to start writing my blog almost two years ago and it has created the largest and most incredible support system for us. God is providing us with what we need to care for Eli. He chose us to be this little boy's parents. He has given us another challenge and although at times I've cursed God for not giving us the healthy baby we expected which has caused many emotional breakdowns on each other, I know this will eventually strengthen us even more.