This Was Our Normal {1}

I thought from time to time I would provide a little insight into some of the things that came along with being a heart parent/heart kiddo. It probably won’t be anything to riveting or overly deep, just a little something to give you a peek into our lives (and another way for me to document/remember all of the details of our crazy ride). I know that lots of people thought that Charlotte’s surgeries had “fixed” her heart.  She was doing really, really well (hence the incredible shock of May 31st), but we knew that even with surgeries, her heart would never function at the level of yours and mine. No matter how well she was doing, or how "normal" things seemed, there were bits and pieces of our daily routine that served as constant reminders of the craziness that was going on inside that little ticker of hers.

This Was Our Normal {1}

From the time she was two weeks old, our little Charlotte was on her way to becoming a human pin cushion. You see, Charlotte had a teeny tiny little shunt placed in her heart when she was only 1 week old. That teeny tiny little shunt was the ONLY way that her heart could get blood to her lungs…the only way that she had to get oxygen to the rest of her body.

To put it in the simplest of terms…

Any blockage in that teeny tiny little shunt (a clot) = No oxygen = Bad news

In order to prevent said disaster from occurring, Charlotte was started on blood thinners shortly after her first surgery. The medication was initially given to her through her IV, but was then switched to a subcutaneous shot (like insulin) that we could give to her at home. Yes, you heard me…we gave it at home. Ugh, I remember the very first time that I had to poke my little lady with that nasty needle…I’m pretty sure that I cried more than she did! You always hear stories about how AWFUL it is for a mommy to have to take her little baby to the pediatrician for vaccinations. Ha! Not only did I have to deal with the agony of my little girl’s tears, but I also had to swallow the fact that I was the one behind the big bad needle. Give me vaccinations ANY DAY!

The first shot was awful. I positioned myself looking away from her face (I didn’t want to see her tears or have her associate me with the impending poke) and as I tried to steady my shaking hand I just kept telling myself….”Kristen, you don’t have a choice. She gets the shot, or she might not live. You don’t have a choice.” It didn’t make it easier, but it totally took away the option of chickening out!

We would do these shots two times a day…every day…for 12 months.  Left leg in the morning, Right at night.


Charlotte was smart. Early on she would start to whimper as soon as we opened the alcohol swab that we used to clean her little leg. She knew that smell and what it meant. As months passed, however, the tears seemed to lessen. Let me tell you, Charlotte was TOUGH. Most times she would hardly flinch when she got her little poke. We could even sneak into her nursery, wiggle her little leg out of her jammies and give her the shot while she was sleeping! That’s a heart baby for you—TOUGH AS NAILS.

They are hard to see in these pictures, but see those little bruises on her thighs?  Those are from the shots. They actually look really good in these pictures.  

Alcohol wipes, syringes and sharps containers were our a part of our normal.  We hated them, but we accepted them because we had to.  


Anything for our Charlotte...anything.