February is heart month. For this family it is a journey like no other. I had all of these grand plans of things I wanted to do to spread awareness. I wanted to give those unaware a tiny little peek into the life of a heart family. I watched videos started creating jpeg's with some of my design skills I have recently discovered. I wanted to bring to the forefront some true realities of what it is like to be a heart family.
Four days into heart month my heart warrior started vomiting. For more than 24 hours she vomited. In her sleep she gagged and choked. Even when there was nothing left to vomit she couldn't stop. She didn't eat for more than 24 hours. I called the ask a nurse line to see if I could take her to the Urgent Care or if this required an emergency room visit. My mother's intuition already knew but the nurse confirmed it was time for the emergency room.
Having been a frequent flier at the emergency room, I packed a few necessities and away we went. From my house to the emergency room is like the green mile. It brings my PTSD out. Every emotion across the board shows it's ugly head. It takes the entire ride to get myself in true heart mom mode and keep myself collected. I can not let "What if I failed her again" ever enter the room.
Huge Heart Hug THANK YOUS to my mom, my sister, Justine, my crazy soccer moms (Mama D, Ms. Diane, Suzy), Anne, Debbie and Connie. Not even knowing it, you helped keep my sanity and pass the time while we waited. Thank you for all the love from social media!!
But once I entered the emergency room the world stopped. I forgot it was Super Bowl Sunday. Nothing in the outside world truly mattered except my friends and my family. Time ticks away but I am just oblivious to it. I live in the moment. I learn from the experience so I can make better decisions next time.
During this visit I discovered that I have done a great job teaching my warrior to love and want to drink water. Sounds like a stupid accomplishment to some. However, Madelynn was not as dehydrated as originally suspected and did not require an IV. Because they were able to get the vomiting to stop she immediately wanted to drink. Before we left the emergency room she had water and Gatorade and kept it down. To be safe, they checked her heart and all looked good. Sometime after midnight we arrived back home. I discovered the true definition of exhausted.
But now the real journey for Madelynn was beginning, Think about your average 8.5 year old girl. According to the CDC website, she should weigh about 60 lbs and be about 4ft 5in tall. Madelynn currently weighs 45 lbs and is 4 ft 2in tall. She is in the less than 5th percentile for her weight. She lost 3 lbs in just over 24 hours. Pounds she could not afford to lose.
We have started to reintegrate ourselves back to reality. Madelynn back to school and myself back to work. Her body is getting stronger and her want for food is growing but it was a major 5 steps backwards. Instead of finishing the marathon we were on we have to start over. Frustrated, discouraged, failed describe how I feel right now. I have been battling this food issue since two weeks after her open heart surgery in 2008. You would think I would be used to it by now but I am most definitely not.
So the true realities of congenital heart defects is that it sucks. Not even bringing into play that my child's heart had to be stopped and pray it would restart after a seven hour surgery, the day to day life of finding new normal is some days more than I can bare. But I do. I handle it all, I manage it all and I move on. Just like this week's event I will find a new starting point and start my race all over again.
From the outside we seem like the average family. On the inside we fight a battle daily that I would never choose nor wish on my worst enemy. Lucky for me I am surrounded by family and the craziest and best of friends to help keep me up and moving forward.
#adayinthelifeofaheartfamily
TTFN~
Chelsea
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