Jackson Baldwin was born on August 20, 2011, by c-section and he came into this world at 8 lbs 4 oz. After Jackson’s birth, he continually developed more and more blisters on his body, so we were only allowed a couple hours with him before he was sent to the nursery for the night. The next morning, Jackson was transferred to the PICU at Albany Medical Center (about 45 miles away) but I wasn’t able to go with him because I was still healing from my c-section and had developed a high fever. I was not able to see my baby until 4 days later and that is when I finally got to officially hold him for the first time! I cannot even express how emotionally and physically hard it was to go 4 days without seeing by newborn, and not knowing at the time, and for certain, exactly what was wrong with my baby. I could only rely on my family to visit my newborn for me and send me pictures of him. Those pictures showed my baby all bandaged up and with all these cords attached to him. It was the absolute hardest thing I have ever had to go through. I was completely separated from my newborn and totally clueless as to what my baby boy was going through.
From that point on, my life completely changed! To be honest, I couldn’t be more proud to say that either! I wasn’t there for the first few days of his life. However when I was finally able to see him, I had made a solemn promise to him that I would NEVER leave his side again. That is the point where my life, and living for Jackson, had officially started. And, from that moment on, I went through every emotion possible.
Of course I was beyond proud of my little boy for being such a tough guy, in his fight to endure the brutal effects of EB on a daily basis. I can honestly say, with complete certainty, that if I didn’t have a family who is as close and supportive as mine is, I do not know how Jackson and I would be, or for that matter, where we would be. I thank God everyday for the incredible support system that I have. I know how much I desperately need them!
Jackson had a feeding tube surgically placed into his tummy when he was only 1 1/2 months old. I had resisted taking this step, but when he was given the label “failure to thrive”, I decided to move ahead to enable him to receive proper nutrition and fluids. On Sept. 26th Jackson underwent the surgery. In the next couple of months Jackson was in and out of Albany Med Hospital, he was in the PICU at one point due to breathing difficulties. In October he was even transferred to The Morgan Stanley Children’s Hospital (formerly known as Columbia-Presbyterian) in New York City. We spent 6 weeks at Morgan Stanley hospital.
Jackson and I haven’t spent much time home, but when we do, we make the most of it. I am still setting up “mini goals” for us to make. The current goal is to stay home for at least 1 full month, with no trips to the hospital. When we are home, Jackson has many, many visitors! His visitors include everyone from our big family to his many therapists and visiting nurses. Although it has only been 5 short months that Jackson has been in this world, I have learned SO much. I believe that God gave Jackson to me because he only picks the best to deal with his little angels here on earth. I have been chosen to take care of Jackson and, believe me, I have never been happier!
Jackson means the world to me and I feel compelled to educate and spread awareness of EB as much as possible. My family and I have been working so hard to work as a team and accomplish our biggest goal yet of pursuing a bone marrow/stem cell transplant for the newest addition to our family!