Tripp was born on May 14, 2009. I had a perfect pregnancy and a perfect delivery. No problems at all. We did not find out the sex of our baby before hand, so we were all waiting for the surprise. Well, we sure got a surprise when our 7lb. 9oz. beautiful baby boy was born. He came out with a huge blister covering his head and his fingernails were very long and a little deformed. But to me, there was nothing wrong. He was just beautiful... just perfect. See?
Shortly after I delivered... before they came back to give me my baby. The pediatrician on call came in and told me that they were about 99% sure that our baby had a skin disease called "Epidermolysis Bullosa." Wow. Okay... we had NO CLUE what it was or in his case, how severe it was. I started to cry. Not even knowing what it would entail. The doctors couldn't really tell me that much information about it and my family certainly didn't let me look online to read about it because the internet can be a very scary thing, especially since we didn't have a clue what type he had. We stayed in the hospital for about 2 weeks... transferring to the pediatric room after I was healed (which didn't take long, thank God). Leaving the hospital, we still did not know much about the disease. Only that any type of friction would cause his skin to blister and that he needed very soft blankets and soft clothing and cloth diapers, etc... He had the blister on his head, his fingernails were deformed, he started getting little blisters from his hospital bracelet and he started getting HUGE blisters on his bottom from regular diapers. We didn't even know at this time that we needed to pop the blisters because if we didn't, they would grow fast... and take a VERY long time to heal, if they ever healed. They took one biopsy before we left the hospital.
When we took him home, it was time to research. I found out that instead of leaving him naked and trying to air out all of his sores, that I was supposed to be wrapping him up to prevent the blisters. The pictures online made me sad... and I could not look at them. It was family that did most of the research and they would tell me what they found, because I just couldn't look. We then found the charitable organization Debra. I do not have enough space to tell you HOW AMAZING they were to us. We contacted the EB nurse, Geri Kelly who is affiliated with Debra, and immediately they sent us out boxes and boxes of stuff.... diapers, bandaging supplies, blankets, bath sponges, you name it. And about a month after we were home, Geri made a special visit to our house. She brought with her more supplies and a lot of information. Not information we wanted to hear, but that we needed to hear. From day one, I tried to be so positive.... But it just felt as if I kept getting let down. He was gradually getting worse by each month.
Of course, the first biopsy that they took in the hospital did not tell anything. So we brought him to the dermatologist at about 2 months to do the next one. He took a pencil eraser and rubbed hard on his thigh and the blister popped right up. That's how he did the biopsy. He told us then that he thought it was the less severe type by how the blister popped up so fast... little did EVERYONE know that the biopsy came back (months later) as Junctional EB. "Junctional" UGH. I didn't expect that one. Junctional EB kids are not expected to live past two years old. Well there are two types of Junctional (one being more severe than the other) but Tripp's biopsy couldn't distinguish between the two. So that's as far as we went. What did it matter anyway? There had been lethal cases in both types.
We made our first trip to see an EB specialist in Denver, CO. He didn't tell us anything that we didn't know already from our research online. He recommended that we go see a team of specialists in Cincinnati. So we made that trip about 3 weeks later. The dermatologist in Cincinnati told us just by looking at him that he wouldn't live to be a year old. We were devastated. And from that moment on, I told myself that I would dedicate every single solitary second of my life to Tripp. I would do my best to get him the very best doctors, the very best care, and love love and more love. I would make every second that he is here with me special.
The breathing problems started early on... about 3 months, or before. At that time, we really weren't even thinking "trach." That was just not going to happen. We saw a pulmonary doctor (the best around... great, great, great doctor- Dr. Fernando Urrego) and we started nebulizers to help him breathe easier. We did not yet know the cause of the breathing problems. Then the eating problems started. I could not get him to suck a bottle. He started getting the sores in his mouth, he started getting teeth very early, and he was in pain. And he had NO interest in eating at all. I got to the point where I had tried everything... a syringe, a spoon, breastfeeding, every type of bottle and every type of nipple. He wouldn't have it. And the one thing that is stressed the MOST about EB is nutrition. They need calories to heal and calories to grow. And they are losing so much fluid from all the sores that it needs to be replaced. We were in and out of the hospital already for breathing difficulties and because he would go days without eating at all. So we knew we didn't have a choice. It was time for the G-tube. It was terrifying. Sending your "fragile skin" baby with complete strangers and trusting in them to take care of him as you do is pretty much the hardest thing I've ever had to do. But when I saw the end result, I was forever grateful. They took great care of him... his skin looked great and he had his brand new tube. Now we could get the calories in.
After that, we probably spent the next few months in the hospital. We had (and still have) the best doctors in the entire world. His pediatrician is Dr. Lisa Defusco and his ENT is Dr. Kimsey Rodriguez. Without these two, I don't think Tripp would be alive today. His breathing got so bad that I didn't know how much longer he could go on. When they did the first bronchoscope, they found that he had tracheomalacia (pretty much a floppy airway). They made a few snips on the tissue to open up the airway, and it made him breathe better for a little while, but it didn't last long. The second time that they did the bronchoscope, the ENT said that there was nothing else she could do... his airway was too swollen and he would need a tracheostomy. Again, we had no choice. Which sadly, was probably for the best at the time.
Now, we are finally getting used to dealing with his skin issues (we bathe and rebandage his entire body every other day), his G-tube, and his trach. Never is there a boring day. There are always new challenges... new blisters, corneal abrasions, throwing up after feeds, mucus plugs... I could go on forever. But we have learned with time that every day we have with our little boy is a gift from God. He was sent to us for a reason and he was put on this earth for a reason. He is an angel... the joy of my life, what I look forward to every day.
He eventually went through several eye surgeries due to continuous corneal abrasions and tissue growth over his eyeballs. But it got to the point where the surgeries were just causing more harm than good. So we backed off and I had to come to the reality that my son was going blind. He now cannot see (maybe shadows and lights, but that's all). The tissue has grown over his eyelids and his eyelids now fused shut. But the only positive is that they do not cause him any more pain (at least I don't think:)
Tripp is on constant pain medicine, but on most occasions (when he is not down from an infection or acutely sick), he is a very playful, happy boy who LOVES to play the drums.
He is VERY smart and despite not being able to speak/see, he has definitely been given a gift of hearing and an ear for music. He can play his drums perfectly to the rhythm of any tune:)
I am one PROUD Momma.
Tripp and I moved in with my parents in Ponchatoula, LA when he was about a year old. His father, Randy, and I are divorced and he was not involved in Tripp's care.
Tripp's condition continued to worsen with time. The infections were covering his body, and he was too sick to play or even muster a smile. His precious body began to get tired.
On January 14, 2012, Tripp received his wings and went to be with Jesus.
My baby took his last breath, in the rocking chair, in my arms.
Our hearts are broken.
I truly appreciate your prayers and support through this unbearable time.