As I was grateful that Wednesday was uneventful Thursday made up for it. I spent the entire day running errands and helping a friend have everything ready for her husband's business taxes, I barely had time to breathe. However, the first Thursday of every other month we have a meeting with other Cardiac Kids Parents (see link down the side). We are members of the Levine Cardiac Kids founded in April of 2007. These are the parents like us who have one or more child(ren) with some type of Congenital Heart Defect (CHD) and siblings who are normal (whatever that is).
When we were in the hospital after Maddie's surgery we were given a bag of goodies of all sorts of things. Most of it were things you might forget if you had an experience like ours (toothbrush, toothpaste, playing cards, puzzle book). They had a monthly meeting while Maddie was in the hospital so we went. The meeting was very informative and I was very glad some of the parents were smart enough to get together to help new families like us.
Because they are aware of families with siblings, they also let the siblings do something fun while the families are meeting. So we decided to bring Katie and Jack. After the Pizza dinner social Katie and Jack were taken to the 8th floor play area by the CHILD LIFE Group so Phil and I could enjoy the meeting.
This month one of the Doctors from the Sanger Clinic spoke about all the advances that have been developed for the many different CHD. Some things were truly amazing. The showed how some new procedures are done some of which was really unbelievable. However, Phil and I learned how truly blessed we were. We were the only parents in the room with a child with a coartation of the aorta. The reason why......because all the other children had much worse CHD.
Children born with half a heart, hearts that the valves were messed up as to where the blood is to pump to, severe holes where the blood is leaking into the wrong area. Some of these children had to have heart transplants at less than one year of age. I could not possibly imagine having to go through more that one surgery with Madelynn. The first and hopefully only one was a road I never wish to travel again.
For Madelynn there is the small chance that the repaired area will shrink and she will have to go through an outpatient OFFICE procedure to balloon it back open. Yes they do it as an office visit. That part kills me every time I hear it. As of Madelynn's last echo in January her heart looks so good unless you knew what you were looking for you would never know her heart was repaired. Her scar has almost disappeared. It truly is amazing.
When the meeting was over I literally wanted to run home and see Madelynn. We had to pick her up at Grandma Bacho's house. I just needed to see her smile. I was grateful and relieved at where she was in her recovery. I met a couple who was pregnant with their 1st child, a little boy, who was going to be born with a CHD. They have a general idea but won't know the true severity of it till he is born (sometime in the end of June, beginning of July). There was also a young boy who lost his battle with his heart condition last week.
I hear from people all the time. I can't even imagine what it has been like for you. I don't think about it that way. What we went through was nothing compared to some of the others. I don't know what I would had done if I knew Madelynn's condition before she was born. I heard in another meeting that Parents of CHD children are chosen. That Phil and I were chosen to be Madelynn's parents. I don't know why but that word CHOSEN stopped me dead in my tracks.
Then I heard of a mother who took photos of children in the hospital, premature babies, very sick babies. She took these incredible photos for families because for some that would be all they had because the child only lived a few hours or days. One of the parents Thanked her and told her this was what God created you to do.
Some days I wonder If I am doing what God created me to do. I feel like some days caring for Madelynn in her recovery is not enough. I feel like I have walked this road with her for a purpose and I am missing the reason why. So needless to say I have truly been searching for the reason. Although Madelynn is doing very well in all aspects of her recovery, the journey is not over. I am supposed to take what I learned and do something with it. I am not sure what though.
As a quick side note Madelynn went for her weight check this week and gained another 10 oz. I was stunned and very excited. This makes her 13 lbs and 10.5 oz. She still has a long way to go because she still can not be plotted on the chart for her weight yet. She is a fighter and working very hard in her therapy too.
TTFN
No comments:
Post a Comment