Ezekiel's Journey with Half a Heart

This blog is dedicated to our son's journey. He was diagnosed with Hypoplastic Left Heart Syndrome at our 20 week fetal scan. 

[ezekielthebrave]

It’s been a long time since I’ve had a little “helper” to lick the beaters when making something yummy. It’s moments like this the normalcy of our life right now is beautiful monotony. Although I bask in it all, I also feel the fear of the reality of an uncertain future for Zeke. Soak up all the moments with your babies, health issues or not, these moments are fleeting. 💙🥰 #ezekielconor #mommyslittlehelper #worththemess https://www.instagram.com/p/BvrVq-rntlufNJnUD78mZAKxQRMOrtQyNPLo2k0/?utm_source=ig_tumblr_share&igshid=1dlma9bni09b6

[ezekielthebrave]

Unfortunately we ended our vacation inpatient at a children’s hospital in Gainesville. Zeke caught not one, but two viruses. The silver lining here is that after running lots of different tests, his heart and lungs look and sound amazing, and his bloodwork was better than we had ever seen! While we were bummed to be in the hospital, we are so proud of how well his overall health is, even when battling two viruses! He NEVER ceases to amaze us! Just got word we will be discharged today. Can’t wait to get this guy home! 😷🤧🏡💙 (at Shands Children's Hospital - Unit 42) https://www.instagram.com/p/BvUCK3inhuW-SdLRNqr_TLnAuYgvZeaev23_xY0/?utm_source=ig_tumblr_share&igshid=1g6s4rg0m3rcc

[ezekielthebrave]

Today we celebrate in a cabana poolside. 🥳🎂😎 Today also happens to be his second heart-versary. Watching Zeke play in the pool, knowing two years ago he was having open heart surgery, is surreal and overwhelming. I am over-joyed and blessed by the love surrounding him today, and everyday! 💙💙💙💙 (at Orange Lake Resort Orlando Poolside) https://www.instagram.com/p/BvHp4CpHtWTEeB1Dh0Puhprx5IU91m0Vl18q0o0/?utm_source=ig_tumblr_share&igshid=jdxc1gdqwlc3

[ezekielthebrave]

Happiest birthday to the most resilient, affectionate, funny little boy I have ever known. Your spirit brings so much light to the hard hand you have been dealt. You are an inspiration to us, and so many others! I hope I never, ever know what the world would be like without you. 💙🎂🎉2️⃣🥳💙 #ezekielconor #mybabyisnotababyanymore #time2party #ohtwodles https://www.instagram.com/p/BvB7qA5HdvEih7rsgsKRrNVvTh1dV9rkMv1umE0/?utm_source=ig_tumblr_share&igshid=1akvdo4zdylg7

[ezekielthebrave]

Today wraps up CHD Awareness Week. Valentine’s Day has become one of my very favorite holidays, but for different reasons than before Zeke was here. Spread love, and awareness, where you can! Happy Valentine’s Day ❤️💙❤️ https://www.instagram.com/p/Bt3XIQoHka07qy17JNSTrc8Lj-DY94HP1AHP380/?utm_source=ig_tumblr_share&igshid=ghtsm54ifz4w

[ezekielthebrave]

They say it takes a village to raise kids. Our village has a heavier burden of support to carry for us, and we are so fortunate to have you! From flying across the country to come love on us, to sending a supportive message, and everything in between, all of it brought us comfort, ALL of it matters. So thank YOU! But don’t stop! Our journey is far from over. #chdawarenessweek #hlhs #support #ittakesavillage #ezekielconor https://www.instagram.com/p/Bt0vZyQHRhqGItCdd1CZNVJFWpcK7YndnuxOlM0/?utm_source=ig_tumblr_share&igshid=qz1m9ivw5k9t

[ezekielthebrave]

#chdawarenessweek #gratitude #heartwarrior #hlhs #ezekielconor https://www.instagram.com/p/BtyHy0HHfyA01QLsVUVWn3MLxmACkJj0wbnAnw0/?utm_source=ig_tumblr_share&igshid=97g7tgm29lpu

[ezekielthebrave]

I think Zeke has traveled more than I did in my first 18 years. We will be ringing in the new year with family and friends from a beautiful resort in Kissimmee, FL. So thankful for where we are today. I turn to 2019 humble, and with a full heart. 💙 (at Holiday Inn Club Vacations At Orange Lake Resort) https://www.instagram.com/p/BsB6yIiHmIzoP2VVQrhoWZfompbfUyOOUjjm_Q0/?utm_source=ig_tumblr_share&igshid=aobe3mb2lld5

[ezekielthebrave]

This second Christmas season with our heart warrior has been the best ever! We have taken full advantage of this holiday season, and I’m ready to pack up all the decoration and look to 2019. I’m excited to see what this next year brings my family, and 🤞🏻 we go the full year with no surgeries. Merry Christmas family and friends! 🎅🏼🎄🎁❤️ https://www.instagram.com/p/Br1bv5fH62XVXkG7IjSXzgwFaAv3ByFgv2yKOo0/?utm_source=ig_tumblr_share&igshid=89lqdr333rhp

[ezekielthebrave]

This little stinker is catching on to this Halloween thing 🎃👻🍫🍬 https://www.instagram.com/p/BpnK5rcAmQU7wWlHpqXkjCvdftqMiP_4KVS6u80/?utm_source=ig_tumblr_share&igshid=a04ixdyl9kgx

[ezekielthebrave]

This ordinary sight tugged at my heart as I walked into our camper this evening. Zeke was cranky today, which is not normal for him, so for this mama, bedtime couldn’t come soon enough. But seeing his tiny shoes by the door reminds me of how thankful I am to feel “normal” frustrations with him. When I was pregnant, I wondered if I would ever get to this point, and here I am! At this moment Zeke is strong and stable, and I am basking in the normalcy of it all 💙.

[ezekielthebrave]

I thought I was recording an adorable moment 🙄 turns out he’s just like Daddy and likes to make me laugh. I hope this isn’t just the beginning of a bad habit 🤷🏻‍♀️💙😂

[ezekielthebrave]

I thought I was recording an adorable moment 🙄 turns out he’s just like Daddy and likes to make me laugh. I hope this isn’t just the beginning of a bad habit 🤷🏻‍♀️💙😂

[ezekielthebrave]

I thought I was recording an adorable moment 🙄 turns out he’s just like Daddy and likes to make me laugh. I hope this isn’t just the beginning of a bad habit 🤷🏻‍♀️💙😂

[ezekielthebrave]

I thought I was recording an adorable moment 🙄 turns out he’s just like Daddy and likes to make me laugh. I hope this isn’t just the beginning of a bad habit 🤷🏻‍♀️💙😂

[ezekielthebrave]

Got a front row seat to the Thunderbirds practicing for the Air Show this weekend. Sweet perk of Dada working on the flight line!

[ezekielthebrave]

Soaking up our time left in Utah!