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The obvious scar is the one on your chest. Its maybe 8 inches long and its turned white over time, but that is the one that is probably the most dramatic. Then there are the little scars on your belly. They almost look like belly buttons. These are the scars from the chest tubes that they wanted to pull after day 2 but they just kept filling so we didn’t pull them until the day before we discharged from your open heart surgery. You didn’t say much at the time because you were so little, but it was obvious that they were extremely painful- more painful than the incision by a mile. They wanted you up and walking and although you were so painfully bored in that hospital room and welcomed the idea when it was brought up, you realized how painful it would be and would still soldier on through tears as we pushed your IV poll behind you and helped you take these necessary steps.

There is also the starburst scar on your ankle bone. That one always catches me off-guard because it looks like a bruise in a trick of the light, but then I remember; this was from an infiltrated IV that caused a chemical burn to the delicate tissue there. There is also the tiny, barely visible scar on your neck from your heart catheterization after they realized how unusual your heart anatomy is and they would not be able to reach it by going up through your superior vena cava.

These are all the obvious scars. The less obvious scars are the ones that I may never truly know the measure of. I see hints of them- I see it when you even think that a medical professional may do something even minorly invasive. Your terror of the otoscope and the over-arching anxiety you feel when we say “honey, you are sick. We need to go to the doctor.” Already feeling unwell, I watch in a pain I think only a mother can feel as your sweet face contorts into fear and you begin crying tears that no promise I make can ever soothe. There is no hug calming or tight enough to break through this panic. There are no words gentle enough to ease your distress. My instinct is always to take away the fear, the worry, the pain and I find with you, my sweet daughter, I have never had this power and will never have this power. It is my plight to helplessly watch as it is your plight to have such a special heart.

There are scars on us all that cannot be seen. They are deep and painful and reopen so easily. They influence our choices and they make us who we are. Congenital Heart Disease has given our family some very big scars, but it has brought us some very real healing. Without the support of others, there would be no healing- so I continue to look for and ask for support and I hope you will too.

#ConqueringCHD

We interrupt my usual content to bring you Heart Month 2021.

February is National Congenital Heart Disease/Defect month. This month has been a very big part of our lives since 2013 when we learned our daughter Ellie would be born with a congenital heart defect. Since then it has been my goal to help spread awareness, especially during heart month.

In August of 2013 we learned at 20 weeks gestation that our daughter Ellie’s heart didn’t develop the way it should have. We didn’t know much about CHD at the time or even about being parents, so we were overwhelmed and more than a little frightened. On December 4th, after 38 hours of labor, Ellie was born. At full term and under 6 lbs, she was very small; a tell tale sign of her CHD. She was stable enough that they were able to let me hold her for about 2 minutes before they rushed her to the NICU.

Ellie would need several surgeries, the first of which came at just 8 days old. It was one of the happiest and more horrifying times in our lives. We would learn over and over again how strong and resilient our daughter was. We would find strength we didn’t know we had and we would learn what it truly means to loves someone more than yourself.

When we were told that Ellie’s heart didn’t develop properly, the doctor that came to speak with us was straightforward, but left us with a feeling of hope. He told us that she would need special surgeries, but many children living with heart defects as severe as Ellie’s were growing and thriving. We were afraid, but we were hopeful. I met another mother who told me about how her daughter was diagnosed. She told me that she was given three options: Heart transplant, these surgeries which were fairly new and risky, or to take her baby home and keep her as comfortable as possible until she passed.

I think about his conversation often and how in just 15 years time (the age difference between our daughters) the presentation of plan of care went from something risky to something hopeful. This progress is what my daughter and every other person living with CHD needs. They need research and funding to help future families find hope. CHD is the number 1 birth defect. Chances are you or someone you know has been touched by it. I would encourage you to read some information- the Pediatric and Adult Congenital Heart Associations have some great information and do some wonderful work for CHD. If you feel so inclined, share some posts or give a donation. We need all the allies we can get.

Welcome to National Congenital Heart Disease/Defect month. Together, we can defeat CHD!

#HeartMonth day 15: we never thought Ellie would have a sibling, but clearly I’m a really bad predictor of the future. Enter Alex- the sweetest babe that I’ve ever met. He absolutely adores his big sister. He sees her and his cheeks nearly pop from the strain of his smile. And Ellie is just as smitten with her brother. Laran and I were so worried about bringing another kiddo into the mix- we worried about whether we would be able to give each of them the time and attention they deserved, but now- looking at these two and how much love they already share with one another, it’s clear to me that they are the perfect pair. #CHDAware #HeartSiblings #SisterAndBrother

#HeartMonth day 14: What does love look like? Making someone a meal- love looks like that. A genuine compliment- love looks like that. Keeping a promise. Giving a hug. Little kisses on foreheads and cheeks. Staying up and waiting for someone to make it home safely. Helping someone move. Watching and listening to beeping monitors late at night in hospital rooms. Learning medical terms and medication dosages. Sitting quietly. Being loud. Grand adventures and small gestures. Love looks like all of these things and so much more. Whatever love looks like to you, I hope that you feel it, show it, and live it today and every day. From my#HeartWarrior and our family, happy Valentine’s Day.#CHDAware#ValentinesDay

#HeartMonth day 13. Nurses and teachers are two professions that are, in my opinion, overworked, underpaid, underappreciated, and abused like no other professions. The nurses that took care of my #HeartWarrior are nothing short of super heroes. They fight the battles right along with you and your family. They care so much about their patients and their families that it truly humbles you. From bringing taking the time to explain everything to you a thousand times if you need it, to bringing in food from the staff Christmas potluck because they know you haven’t left your child’s bedside for even a moment to get some food- these people are the front line, first responders to everything and we could not do this without them. #HeartNurse

#HeartMonth day 12: this guy here is one of my favorite people. He has been with us every step of the way with Ellie. He showed me that doctors are personable, kind, and trust worthy. Until I met Dr. Knepp, I always just assumed that I would never really like any doctor because up until this point, I never had. Just kind of thought that’s the way all doctors were. Because of Dr. Knepp, I now know that you can not only like your doctor, but you can be respected by and listened to by them. #CHDAware

#HeartMonth day 11- Ellie has seen 5 birthdays and we are so grateful. Not long ago, I’m talking 15-20 years ago- kids born with Ellie’s birth defect or something like it were sent home with hospice or put on a transplant list. Now there are strategies and interventions with outcomes that give these #HeartWarriors a chance at life they would not have had before. #Knowledge#CHDAware#1in110#Number1BirthDefect

#HeartMonth day 10: remembering those gone too soon.

#HeartMonth day 9: Laran gets to take the spotlight for this day, which is a role that makes him incredibly uncomfortable. He likes to be behind the scenes, doing the little things that make the biggest difference. He took on the role of #HeartDad quietly and wholeheartedly. He is Ellie’s biggest fan and strongest supporter. Without him, this would all fall apart. He is our anchor. — with Laran Crawford.