Sunday, June 17, 2012


I've been told I worry too much, but when you see things like your child's growth chart not moving, you tend to worry.

From July 2010, when DQ was the sickest, until April 2011, after DQ's last open heart surgery and just before she was the healthiest ever, she grew about one inch. One inch in nine months for a 2.5/3 year old. That was not good. But, as DQ started to get healthier after surgery, she started to grow. Between April 2011 and August 2011, DQ grew about three inches. The single largest growth spurt ever for DQ at the time her heart was the healthiest ever.

From August until Christmas Eve of last year, DQ grew another two inches. We were excited that the trend would continue, especially since DQ had just started Hizentra and cutting way down on illnesses.

Then, I started to notice her going down hill. It wasn't enough to pinpoint, just something I noticed and felt. The doctors saw nothing they could do. They didn't feel like any changes could help, so we moved our baseline for "concern".

We measured DQ today. In the six months since Christmas, DQ has grown about half an inch. Only half an inch.  When TRex was that age, he grew about three inches over six month.  And DQ hasn't really gained weight either. She is hovering around the 28/29 pound mark.

She's not growing. My baby is not growing.

All she wants to do is be big. She wants to move out of her car seat into a booster. She wants to be able to climb onto Mommy and Daddy's bed all by herself to hear her good night story. She wants to sit at the dining room table without being on her knees and she refuses to use a booster.

My daughter is four years and three months old. She is the size of a two year old. The year before her last open heart surgery, she didn't grow at all. She stayed the same weight (between 24 and 25 pounds). Are we heading there again already?

1 comment:

Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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