Anniversary

Many parents that have gone through something like we have (or worse) will tell you they celebrate their child's heart surgery anniversary. I never understood why until this week. It just hit me. 5 months ago today, I was sitting in the CVICU at the Levine's Children's Hospital watching all the monitors tick away. Madelynn had come out of surgery about 4 to 5 hours earlier. I was getting over my state of shock and trying to educate myself about everything that was going on with her. It was easier to educate myself than it was to feel anything, and safer. I think the only way I made it through was to ask questions.

The day before when we found out I had so many calls to make. I knew it would get more real the more I explained it so I called my job first. I know that sounds cold but I knew I could only get through it one time without losing my mind and if I told my job first I would have to worry about anyone calling over and over again. Then I could just be with family and worry about my two precious gems at home.

I wrote letters this week to the CVICU staff and thanked the stunning nurses. They truly are a special group of people I don't know many people that could do what they do. I also thanked the incredible staff at the pediatricians office. They have been very concerned about Madelynn and her recovery. Anytime I called they just jumped to help us and fit us in whenever necessary. They prayed when Madelynn was struggling and cheered when she reached certain goals in her recovery. They have been great.

Although I have not really met everyone yet, the other parents with the Levine Cardiac Kids are just like us. This is the group that has helped me the most and they don't even know it. While Madelynn was recovering from surgery Phil and I went down to our first meeting (in November). They were very gracious and very concerned, very inviting. We were unable to go to the Christmas event because Madelynn was back in the hospital. It was all I could do to keep it together for Kaitlynn's birthday. Lucky for me I was all ready for Kaitlynn's birthday (presents wrapped and all).

During the days and weeks that passed I thought I was going to lose it. Madelynn was still having trouble eating, she was losing weight or just barely maintaining the weight she had. In early January I had a very unhappy visit with one of Madelynn's doctors. No one was listening to me. I thought I was at an end and did not know where to turn. I went to the LCK meeting. That night the guest speaker was a therapist who was talking about the stresses of have a child with special needs medical or otherwise.

I had made arrangements for someone to watch the kids. Phil had to work so I went by myself. I actually learned a lot and felt a little better when I left the meeting. I am not sure what came over me but as I made my 45 min drive home I just started crying and could not stop. I almost had to pull over. This was the first time I REALLY cried ( 2 months later). I actually felt better by the time I was getting closer to home. I had to get it together because the last time Kaitlynn and Jackson saw me cry was the day the urgent care doctor called and told us something was wrong with Madelynn's heart.

This was not a call I was expecting. As the Doctor was explaining I listened and tears just streamed down my face. The kids were stunned and scared that mommy was crying. Jackson was so worried asked me what was wrong. I couldn't and promised myself a long time ago I would never lie to him. S0 I told him that Madelynn's heart was not shaped like his and that we needed to go see a special doctor to see if he could fix it. Little did I know what that one sentence entailed.

Since that night driving home, I found a new burst of energy and a new voice for Madelynn. I finally got the doctor's HEARING me. I found help with a nutritionist who is great and we love the physical therapist. They are both thrilled at her progress. The last time we saw the cardiologist he was elated. Madelynn still has a long way to go but she is definitely on a road I have not been on with her before and I am very much enjoying the ride.

We have a weight check tomorrow. Hopefully we can continue down the road we are on.

TTFN