I hope you don’t mind that I call you that, you kind of adopted the name early while I was still pregnant, and the name letterstoLogan was already taken.
I can’t imagine that I’ll ever forget, but just in case I would like to make sure that I have all of the details put down somewhere where I’ll always be able to bring them back up if I ever do.
First of all, the most important thing that I want you to always know, is how incredibly grateful I am for you. I know that you are going to have some pretty rough times ahead of you, but you must know that as difficult as they may be for you, I can assure you that as your mom, it is a million times more difficult for me to watch you go through them. I also want you to know that I will always be there for you.
Your father and I always knew that when we had children there was a 50/50 chance that our children would have marfan, but thankfully we never knew that they could be more severely affected than dad was. I say thankfully, because if I would have known that I would have to put you through all that you have been through I may have made the decision to not have children, and I cannot even begin to imagine, even for one second what my life would be like without you. You have always been a breath of fresh air. Even at your worst, you were inspirational and amazing. Actually, you were so amazing that a lot of the time you made it easy to forget exactly how sick you were.
I have to be honest with you, when you were born, your father and I thought that you had died. The delivery room and all of the doctors and nurses were silent (as were you). You were a c-section, and I was numb from the waist down, so I wasn’t able to see you. After a few seconds, which felt like forever, I heard one of the nurses ask the doctor if they should save your cord blood, and he said that it was too late. The doctor also told someone in the room to call the neonatologist. I can’t tell you how relieved we were when he told us that you had marfan syndrome. We were so happy that you were alive!!
Dr. Spooner your first cardiologist came to see you the day after you were born, and told us that he could tell just by looking at your long fingers, arms, and legs that you did in fact have marfan. He also told us that he could hear that your valves were leaky, and that we would have regular visits with him.
The visits started pretty early, you were around 1 month old and we saw him once a month for echos, and at 3 months he put you on losartan and told us that you would absolutely need to have surgery to repair your mitral valve at some point during your childhood, but he hoped that we could put it off until you were at least 5 and that if the losartan worked really well, we might make it until you were 10. I was so naive, that I actually thought that it was going to be your miracle and actually reverse your leaky valves. We would later find out exactly how wrong I was and how very, very wrong Dr. Spooner was.