#HeartMonth day 8: I am a #HeartMom, but I’m like every mom. I get frustrated, I cry, I say things and then look back and think “yeah- that was not one of my better moments”. But as flawed as I am, I am equally devoted to my children and doing the best I can. I have often heard people tell me “I don’t know how you guys do it. I could never do what you do.” And I always have the same response: yes you could. You would do anything for your children- this is just not one of the anythings being asked of you. If it was, you would do it too and you would do it with all the love, trust, strength, and passion you have because that is what it means to be a parent.#CHDAware

#HeartMonth day 7: so I accidentally skipped the challenge for day 6 and posted the day 7 challenge, so this is actually the day 6 challenge. Ellie was born on 12/4/13. This photo is one of the very few I have of her before any surgeries- when her heart was at its most broken and in desperate need of intervention. When I look at it- it almost looks like there is nothing wrong at all. I still feel that way, sometimes- that if you just look at Ellie, you would have no idea anything was wrong. Her scar tells the true story, but honestly, she is still perfect despite her imperfect heart. These children and adults are so much more than their #CHD. They are#HeartWarriors and so much more. #CHDAware

#HeartMonth day 6: my #HeartWarrior is Elllie. She has fought hard her whole life and truly is a warrior in all respects. She is courageous and amazing. She is #1in110. Because of her I am a mother. Because of her I am stronger. Because of her, I am #CHDAware.

#HeartMonth day 5. I think without exaggerating Ellie has had over 200 EKGs and echocardiograms. When she was an infant they were horrible! She cried and screamed and occasionally threw up. Now she’s a pro. She still doesn’t like having to sit still but she always finds the will power, especially when a special surprise is offered as compensation. Every year, 40,000 infants in the U.S. are born with #CHD. These tests can be lifesaving and help these children and adults manage their conditions. They are virtually pain free which cannot be said of some of the other interventions. #CHDAware#EchoPro

Welcome to #HeartMonth day 4. Over the past 5 years, Ellie has been on and off and on again a number of meds. I remember having to give her lovenox injections twice a day for the first 7 months of her life. Her little thighs where we gave the shots were bruised and knotted. When we first started the injections, she cried and cried barley consolable tears, but after 7 months, she never even flinched. I remember when she was on a beta blocker for her tachycardia and having to time absolutely everything around those meds (she needed them every 6 hours day and night). Things are easier now with only 2 medications on board every day, but that, as well as everything else is subject to change with #CHD. #CHDAware

#HeartMonth day 3! The hardest thing I have ever had to do is give my daughter to a person I have barely met and put her life in their hands and the hands of the entire surgical team. I’ve done this twice and I still have no idea how I did it. I will have to do it again- possibly many more times, and I struggle to believe I would be able to do it again- but I will. I will find the strength somewhere because it is what needs to happen. There is no cure or preventative measures for #CongenitalHeartDefects, there is only interventions after the fact that can improve the function of heart. Below is Ellie after her second surgery, the #Kawashima in 2015. Also pictured, Pru- her stuffed dog that has seen her through all her surgeries.#StuffedAnimalSurgeryBuddy#CHDAware#PABand#Fontan

Day 2 of #HeartMonth. We are the lucky ones. Ellie’s special heart was discovered when I was 5 months pregnant. It wasn’t until she was born that her exact diagnosis came to light, but we knew we were on a totally different path at 20 weeks gestation. #UnbalancedAtrioventricularSeptalDefect is the name of Ellie’s diagnosis, but all you really need to know is that half of her heart didn’t form fully leaving her with just half of a functioning heart. Enter OSF Children’s Hospital of Illinois– a place that I had no idea existed until I was told Ellie would be spending time there having surgeries and procedures that would help the little heart she has to function as best as it can. CHOI is outstanding and staffed with people who amazed me every day. Thanks to them, Ellie is a thriving 5 year old with a bright future ahead. #CHDAware#SingleVentricle

It’s #HeartMonth and that means your news feed will be inundated with a lot of information about #CHDAwareness and our family’s personal journey with #CongenitalHeartDisease. I know this stuff is tedious and maybe even redundant but I do hope you take a moment to read some of these posts and the posts of others in this community and learn a little more about the #Number1BirthDefect and what you can do to help kiddos like Ellie. Welcome to Heart Month, everyone.

Giving your child over to a stranger to perform surgery is extremely conflicting. You know it will be painful. You know it will be traumatic. You know that it’s risky and even dangerous. It goes against every parenting instinct you have, but you know that it is necessary. So you do it.

You sit in an uncomfortable plastic and vinyl chair and hold your newborn baby in your arms and let the tears stream silently down your face while you wait for them to take her. You do your best to memorize every detail of her face- because…. well, you can’t think about why. You breathe in her sent and try to distinguish what’s her smell and what are the smells of the hospital blankets she’s wrapped in. You watch her body rise and fall with every breath and feel the beat of her heart and try as hard as you can to believe that this will not be the last time you get to do this. You pray to your Deity of choice,  whether you believe in them or not because it can’t possibly hurt to beg for their intervention on your behalf.

You watch the clock. You don’t want to. You hate the clock. The clock is a physical representation of your enemy. Time had never been a concept that you ever considered overly important until it became vitally clear that each tick of that second hand is not guaranteed. It keeps slipping away which means your moments with this perfect little human are slipping away too. You tell yourself to ignore it. You tell yourself not to look. You tell yourself it won’t change anything to sit and stare at it, but you still position your chair squarely in front of your tormentor because all of your will power is otherwise engaged merely keeping you sitting in this room waiting for a stranger to take away your whole world. So you sit in front of it and volley between memorizing your daughters face and doing the math to figure out how much more time you have to memorize your daughters face.

And then suddenly it’s time. The nurse who had been handling you with more patience and compassion than you ever knew possible gently guides you to the pre op room. They talk about things. They have you sign paperwork and when they ask you if you want to read it, you answer firmly that you don’t. You’re going to sign it not matter what it says because you have to. They introduce you to all the strangers who are going to be holding her life in their hands and they ask you if you have questions. You can only think of one and you’re too afraid so say it out loud. The surgeon senses your question, though, and answers it without making you ask: there is a 80% chance of survival. 80% seems so inadequate- but without this intervention, the odds are 100% that she will not survive.

They begin to wheel her away. You are still giving kisses and making promises to her you’re not at all sure you can keep. You watch until they disappear behind the double doors and you crumple into the arms of your spouse and they crumple into you. You hold each other for a while and cry and pray and push the doubt as low as you can. When you feel like you can breathe again, the same nurse who has been caring for you during this process is there and guides you to the waiting area. She has a box of tissues in her hand and she pulls you in for a hug and you feel like shit because you can’t even remember her name. They explain how you will get updates and they tell you where you can get coffee and snacks and then tell you to go find a spot and get comfortable.

You are calm now. You don’t feel tears tugging at your eyes or the shallowness in your chest. It all somehow seems less real in this room, like maybe this is all happening to someone else. You spot your family already seated and you walk over to join them. You put a small smile on your face because they need to see you strong- they need to see that you believe it will all be fine. They wrap you in a quick hug and then immediately begin conversation about anything to distract you and you find you’re eternally grateful for their presence. You settle in and continue to watch your nemesis tick the time away…. and wait.

End part 2