Entering a blog post today was not part of the plan. However, most of today was not part of the plan. It's Monday.....which means school, work and one of my busiest days of the week at work. I took my shower, woke the kids up, picked out Madi's clothes all the usual things.
I went downstairs to start the kids breakfast turned on the dining room light and my whole day changed. Madi's white of her eye was almost red and her eyelashes were all crusty....PINK EYE...YUCK!! Lucky for us our doctor is open 7-7 Monday-Friday. I called them and they could see us right at 8:00 am....LUCKY BREAK....Nope.....all part of God's plan for us today.
So I dropped the older two off at school and headed to the appointment. We checked in and waited to be called. Then the thing I dread the most weight check. Since her Open-Heart Surgery (OHS) in 2008 Madi has struggled with eating and weight gain. She was almost labeled "Failure to Thrive". Sometimes one of the worst side effects to your child having OHS is eating and weight gain. For a while Madi didn't even register on the growth chart because she was so under weight.
She has to sit at the front of the bus in a special seat because she weighs less than 40 lbs. Back in November I took her for a weight check to see if she could ride in a booster seat to Florida. NOPE!! she still weighed less than 40 lbs.
Then today happened. We walk in she hands me her coat and shoes and jumps on the scale. 40.2 lbs!!! I was speechless. I was waiting for someone to tell me it was wrong. But it wasn't. When it finally hit me we had reached a huge milestone I had Madi get back on the scale so I could take a picture and text it to Daddy.
Although I am excited we reached a part of our journey I have been longing for just like her CHD nothing is guaranteed. I have lived the heart break of two steps forward and five steps back. When they moved Madi out of a critical care room and into a regular CVICU room her lung collapsed. We went to see the lung doctor and I thought she was doing great and he needed to give her an immediate treatment because she had an infection in her lungs. She started to get regular UTI's they thought her urine was travelling back to her kidneys. More tests, more unknowns, more stress.
I have begged Madi to eat, bartered with her, yelled at her, told her if she didn't eat the dinner provided she could not have anything else. NONE OF THIS WORKS!! Today was a big day and I was thrilled to tears she finally made 40.2 lbs. But what you don't know what you can't possibly imagine is that she ate 3/4 of a large banana, ONE rigatoni noodle, a granola bar and a yogurt today, not for lack of trying.
All this means is we wipe the slate clean, she will probably be starving in the morning and she will probably eat scrabbled eggs, a piece of peanut butter toast and some milk for breakfast. Everyday I have to let go of the failure of yesterday and try something new and inviting the next day. The good thing is she likes the healthy stuff. I just have to pick the healthiest things I know she will eat with the right kind of calories in it.
Because of this up and down journey I can not put Madi in a booster seat yet. I have to wait a few weeks take her back to the doctor, just for a weight check, if she is over 40 lbs again then I can buy her a booster seat. Nothing with a CHD journey is ever guaranteed. Madi's corrected heart surgery is doing beautifully but what about the residual effects that stem from it. When Madi celebrates her 7th birthday I will be lucky if she weighs 41 lbs. Her average weight gain is 3 lbs a year. At this rate when she is 14 she will be lucky to weigh 62 lbs. According to NC law I will have a teenager who legally still has to be in a booster seat.
CHD's happen to real people every day. Just because the heart is repaired doesn't mean the fight is over. There is so much that is still unknown about CHD's. Spreading awareness, raising funds so the research can be done, figuring out a way that CHD babies live past their first birthday, why do so many CHD babies have difficulty with eating and gaining weight. These are real issues that I and so many other families face everyday. We need real answers.
Madelynn is 1 in 100.
TTFN~
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