Wednesday, April 05, 2006

Not long ago, I joined a Yahoo group for Congenital Heart Defects. I'm not very active. I've only posted a couple of times, but I get the messages in my email, so I read all of them. They make me think differently about how parents cope with things, and how differently you see things after you learn that your child has a major health issue.

Tommy, my oldest son, was a difficult pregnancy. I went into premature labor repeatedly, nearly died of a severe kidney infection, was put on bed rest, and gave birth something like 6 weeks early. Fortunately, there were no complications. He was over 7 lbs when he was born, and was discharged the same day I was 3 days later.

When he was about 18 months old, he went through this phase where he refused anything but a bottle, sliced American cheese, and dill pickles. His pediatrician wasn't worried. He gave me the "kids know when they're hungry, they won't let themselves starve to death, when he gets hungry, or tired of pickles and cheese, he'll eat..." speech. I proceeded to feed his strange appetites without thinking much more about it, for about a month, until he decided he didn't like pickles or cheese anymore, and went back to eating pretty much anything I put in front of him.

Today, I got a message via the Group, in which a first-time mother of a one year old Heart Baby asked about her child's refusal to eat finger foods, or baby food either for that matter. All he wanted was a bottle. His diapers were normal, his pediatrician wasn't concerned etc...

My first thought was to respond by telling her my Tommy story, and then I gave it some more thought. Heart babies seem to have feeding problems, lots of them. I've never had a heart baby post-surgery at home to eat, I have no experience with any such thing. Maybe it is the same as any other baby goes through, just a phase or whatever. And maybe it isn't. I don't know.

What I do know is that when I get Nova home, I'll be freaking out about every little thing. I'll have no idea what's 'just a phase' that any child would go through, or what's a sign of a potential problem. I'll be asking a million questions of all of you. His pediatrician and cardiologist will probably hate to see my name on the caller ID because I will drive them insane. I'll be paranoid, and seeing signs in everything he does, every change he goes through, and I'll never be able to believe that there's any such thing as "normal" or "nothing to worry about" when it comes to him.

So, am I nuts? Or is this a pretty normal reaction to all of this? All of you with older or post-op kids, do you freak out about every little thing?

posted by Erin @ 12:55 PM   4 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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