Friday, April 20, 2007


I have been thinking about Tommy alot since the time is coming up for his next surgery. I wanted to know where the time went. I wanted to know where my tiny infant in my arms went. Oh yeah, he never was.... I am mourning Tommy's infancy, or lack thereof to be more to the point. I have pictures of me holding him as a "newborn" if you can say that about a 33 weeker preemie. Every picture I have he is covered with wires or tubes. He was on a cannula until his heart surgery, then it was a ventilator. From October 24, the day before his surgery, until Dec 6, the day after his trach was placed I could not hold him. He was due November 11, so when I finally did get to hold him, he was almost a "month" old!

I never got to nurse him. The one child I finally decide to breastfeed, and he can't swallow. Stress finally dried up what I was trying to pump for him when he was 3 weeks old. I never got to hold him to give him a bottle. I have never had a 2 am feeding, although I do stay up until that time to refill his feeding bag and give him a dose of reglan...He never wakes up. Until 2 weeks ago, he had not slept in my arms since he was in the special care nursery.

My only happy thoughts today is that he is being very sociable. He fussed to be removed from his swing. He has a hard time being held and making eye contact at the same time, so he is sitting on the couch next to me in his bouncy. We are talking and laughing with each other. Ok, I am talking, but we are both laughing! I am trying to give him toys of different textures, colors and sounds while we talk. A side affect of me trying to break down his walls.

When we brought him home on Dec 13, he had been on this earth for 79 days -- about 2 and half months. His due date made him just over a month old corrected age. It was so traumatic. He made no eye contact for another month, and it took another month for him to smile. It is still a very big deal to me when he smiles. He just laid in his bassinet and did nothing. No facial expressions, no emotion. Just there. For a few weeks, we kept him in the living room because we didn't know how to move his equipment every single day. We were adjusting to the massive amount of boxes delivered from the durable medical equipment people, along with his hardware. I slept on the couch next to him. More like short naps.

I look back and wonder if I could have done something to let him know I loved him more. Trying to hold him ended up with him not being able to breathe and me crying. Even now, I can only cuddle with him for a minute or two. He doesn't tolerate the feeling of being held and making eye contact at the same time. It must be one or the other. My new trick is to hold him up on my shoulder, but show him ourselves in a mirror. I get to look at him while I am holding him, but he doesn't have to look at me.

So now he has been in our lives for almost 7 months. He has the development of a 2 month old, right where he was when we brought him home. I am conflicted to help him develop to a normal for his age child and holding on to the infant I never had.

1 comment:

Nancy said...

I hope it helped you to get your thoughts and feelings written down. It seems to help me a lot. I still mourn all the things that I wish I could have done with my daughter. I still mourn the things that will never be. It's normal and even healthy to acknowledge those feelings so that you can deal with them and then move on to YOUR "normal". I don't dwell on the missed opportunities but on occasion I allow myself to mourn them a bit.

You and I both know that someday our heart kids will have perfect bodies that will allow them to do everything they missed doing here in this life. I look to that time with hope. We talk to Jessica about that when she gets to feeling too discouraged. There's no doubt in my mind that Jessica accepted her body before being born knowing full well what trials lay ahead for her. She did it to help teach others of God's love and to help other appreciate their lives. She has also taught me the true meaning of unconditional love.

Hang in there, you are doing an awesome job!

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries