Dear Colin, Part I

Dear Colin,

I’ve been meaning to write this letter to you ever since your funeral. I’ve thought about it constantly. I’ve written it in my head dozens of times. Here I sit now, ready to tell you how I feel.

First, I want to tell you the story of your life. Although your life was short–in a week you will have been dead for as long as you were alive. Although I knew this before I wrote this, it amazes, disturbs and hurts me to put it down in black and white.

Here’s your story:

When we found out that I was pregnant with you, we were surprised, because you weren’t planned, but we were happy that our family was going to grow. Everything was going fine until we went to the 20 week ultrasound. We thought it would be like your brothers’–uneventful. I knew you were a boy before the technician even told us that you were. She was checking you out, measuring your arms and your legs and your length–looking to see that all of your parts were where they should be. Everything seemed to be okay, but when she was looking at your heart, showing the blood pumping in and out, she got very quiet and spent a lot of time looking at it. I started to get anxious, and finally asked if something was wrong. She said she thought there was something wrong with the way your heart was working. She brought the doctor in to take a look, and after many minutes she said that she thought that you had Tetralogy of Fallot–a combination of heart defects. We were very upset and very surprised. Neither of your brothers had any problems, and we didn’t know anyone in our family who had a problem like this.

We were sent to a specialist–a pediatric cardiologist–to have another look at your heart and to confirm the diagnosis. Dr. Humes looked at your heart for a long time, because you wouldn’t stay still long enough to let him have a good look. He wasn’t sure that you had Tetralogy, but he wasn’t sure exactly what the problem was, either. We left that appointment having already scheduled a follow-up to get a better look and hopefully cement your diagnosis. That afternoon, the doctor called us because he had all of his colleagues look at the recordings of your echo. He gave us a diagnosis of Transposition of the Great Arteries. Basically, the two big arteries that direct blood to and from the heart were switched, so deoxygenated blood that should go to your lungs to be oxygenated was going to your body and oxygenated blood was going to your lungs. You were okay as long as you were unborn because you weren’t yet breathing air. When you started breathing air, though, that would be a problem. Thankfully, though, you were born with some other defects that allowed the blood to mix enough so that you would have enough oxygen to be okay without any support after you were born. We had the second echo about 6 weeks later, and Dr. Humes was able to confirm that you did indeed have TGA and a Ventricular Septal Defect. So, after that, we just continued to get ready for your arrival.

When you came, you might remember this, but Dr. Gordinier said that you were “perfect.” Her exact words were, “He’s perfect, Rachel.” Then you peed on the doctor who was assisting her. That made everyone laugh, which was just what we all needed. I got to see you for a few seconds, then the doctors started to tend to you right away. You were having some troubles breathing, nothing major, but they whisked you away to the special care nursery. I went back to recovery and waited a long time to be able to see you. I cried a lot, and shivered a lot, ’cause the anaesthesia was starting to wear off, and that’s just what happens.

Finally, they took me back to see you. You had a machine called a C-pap on that was helping you breathe, although you didn’t really need it then. You looked perfect. Pink and round, with the longest fingers and toes I have ever seen on a baby. I think you would have been our tallest boy had you been able to grow up.

I only got to see you for a bit. I had to rest and recover from the C-section and they had to get you ready to transport to Children’s Hospital. I had hoped that you could stay with me for a little bit, but they thought it best  to take you to the NICU there that day.

They brought you in so I could see you before they took you down to the hospital. They had sedated you and it was a little scary to see you like that, but they said it was so that you would be comfortable. I hate the fact that the only time you ever went anywhere outside of a hospital was in an ambulance under sedation. Even more, I hate the fact that you never left the hospital, ever.

The first few days that you were at the hospital, I had to be away from you at my own hospital. It was one of the hardest things I ever had to do. I couldn’t nurse you; I had to bring my milk in with a machine. Being on the maternity ward was especially hard. Hearing babies cry and happy families visiting newborns broke my heart. I spent a lot of time alone in my room crying for you.

I finally got to meet you for real on Friday–four days after you were born. We couldn’t get there fast enough. It was pouring rain and I was on a lot of medication, but I didn’t care. I wanted to leave earlier, but no one thought that would be a good idea. Your Grandma Grandma brought me to see you. You were so beautiful, baby. No one would have ever guessed there was a thing wrong with you. Over the next few days, all of the support measures were taken away. They took out your central line a day after I could visit. We started to feed you with a bottle and you took to it right away. So quickly that the nurses were asking the doctors if it was ok for me to nurse you. Finally they said yes, because they knew it was best. That day was so great. You nursed for 20 minutes the first time out. A healthy eater, just like your brothers. I was on Cloud Nine. Finally able to really be your mommy. By the time you went to surgery, all you had were leads for your heart and a pulse oximeter. It was sometimes hard to not stare at your vitals on the monitor instead of you–but not too hard. You were so strong from the beginning. They had to take blood from your scalp and you wouldn’t even cry. I had to change your diaper to get you to cry! That was one thing that definitely made you mad, wet pants and the ensuing diaper change. I was able to give you your first bath while you were in the NICU, too. Right there in a little pink tub. You really liked having your hair washed. And that would continue to be your favorite part of your bath. You came by it honestly. I love having my head rubbed!

We knew your surgery was drawing closer, but I didn’t spend a lot of time thinking about it. I was too busy spending time with you and enjoying the moment. I’m so thankful that I had those five unfettered days with you. I wish, though, that I had asked for more time before we took you to surgery. That’s one of my biggest regrets. We met with the doctor before surgery and I asked what would happen if we didn’t do the surgery at all (not an option, of course). But I never asked if we could wait a while before we did it. After all, you were doing great, and I would think that a few more days or weeks, even, would have made surgery that much more successful. But for whatever reason, I never asked that question. I think that I probably just wanted for you to have the repairs done so that we could get on with our lives. I nursed you for the last time at around 10:30 on October 28, the night before your surgery. I didn’t know it was going to be the last time. I don’t know if I would have done anything different if I did.

This is about all I have in me right now. I didn’t realize that I was going to go so far into depth with your story, but it just feels so right to tell it in such detail. It hasn’t been very poetic or beautiful, just matter of fact, but I need to get it out in writing and I need to tell you what happened.

I miss you and love you more than you can possibly understand. Though maybe now, you do understand. I cry every day for you. But I also smile for you, too. It’s all so completely bittersweet. Maybe in a few days I’ll continue your story. I have a feeling this letter might just become a trilogy. We’ll see.

Good night, sweet baby Colin. I’m blowing you kisses and waiting for the day that Austin figures out how to build that rocket to Heaven.

I’ll write again soon.

Love,
Mommy

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