Heart to Heart: Mom of a CHD Warrior

Today marks 6 years ago that God changed me forever. It seems every year is just as real and emotional as if it was yesterday. I sometimes wonder if it will ever get easier. Will I ever be able to talk about life as it was during that season of our life without choking back the raw emotions stuck in my throat?

I was 6 1/2 months pregnant when I had to be admitted to the Antepartum ward due to placenta previa, which put baby Josiah at risk for being born too early. Josiah was diagnosed with a large Omphalocele (most all of his abdominal organs were in a large sack outside his tummy) and a Congenital Heart Defect, Tetrology of Fallot,  just a month prior. All this was so foreign to us, forever changing us. Everything was moving really fast right before I was admitted. Specialist Obstetrician appointments 2 hours away bi-weekly, working full time, and tending to our 4 year old little girl. So here I am, living 2 hours away from my precious family, my job is now squashed, and now I’m all by myself feeling helpless and forgotten.

I thank God daily for such an amazing support system, my family. Josh and Madison drove the 2 hour drive every single weekend and stayed until Sunday. Every weekend. I lived at Baylor Hospital for 100 days. That’s over 3 months. So many tears of anger, sometimes tears for protection, and sometimes tears from feeling alone. I prayed daily, reading God’s word, and searching for answers. Feeling like God had forgotten me.

On occasion we were given an option to terminate the pregnancy. I understand that doctor’s minds are facts, statistics, and science. My husband and I kept our minds on God. We wanted to put all our trust and faith in God. We decided to fight for his life. Honestly, it was never even an option. Matthew 19:26- But Jesus beheld [them], and said unto them, With men this is impossible; but with God all things are possible.  Even Luke said in 18:27 …The things which are impossible with men are possible with God.

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Six years ago on February 18, Josiah was born. He was immediately taken by C-section (due to the high risk of his many complications), I was only allowed to see him for a few seconds before he was rushed off to NICU. He would be hooked up to every known wire, IV’s running from what seemed like every limb, including his head. I remember just sitting alone in the NICU watching my tiny baby being held in an incubator. Sitting in silence, surrounded by all the other sweet babies struggling to survive. Just when we received good news, bad news followed right behind. “It’s going to be like a roller coaster ride” is what all his doctors said to expect.

Josiah’s first surgery was when he was 3 days old for his Omphalocele repair.  We wouldn’t be allowed to hold him for another 2 weeks. I remember that day so well, whispering into his small ears- mommy loves you, my nervous fingers petting his little head and cheeks. He would’t be allowed to eat until he was 3 weeks old (he was given nutrients through a feeding tube). Josiah would later (at 4 wks old) have open heart surgery after going into congestive heart failure. We knew this was coming, yet we were still unprepared. The agony of watching our little baby boy disappear down the corridor towards the operating room. Praying that it wouldn’t be the last time we kissed his sweet face. Both our family’s came together that day. Waiting for what seemed like eternity, praying for Josiah and Josiah’s surgeon. The fear and anxiety that took over our body during the surgery, but yet peaceful at the same time.  It’s so strange to be in such a place where you feel helpless, yet also feeling strong.  Philippians 4:13- I can do all things through Christ which strengtheneth me.

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Our lives were forever changed. This little warrior, called Josiah. Weeks went by where I only slept 1-2 hours nightly because all the alarms from his heart sensors would go off every 2-3 minutes. Worried that I’d be sleeping and wouldn’t be able to get to him if his heart struggled to work as it should. Watching him continuously struggle to keep his formula in his tummy after being fed by tube. He weighed 7 lbs 4 oz when he was born, he discharged from Children’s when he was just over 2 months old weighing the exact same as when he was born. God is faithful. God is in control far beyond the immediate situation.

Today Josiah is 6 years old. He’s super energetic and never slows down. He still has a Cardiologist that we see yearly. He battles a rare blood disorder Idiopathic Thrombocytopenic Purpura (ITP), low levels of platelets that prevent bleeding. His immune system attacks/destroys his platelets thinking that they are foreign, which causes him to catch nearly every virus thats going around. Honestly, I count this residual issue (ITP) nothing compared to what God has and is still doing in Josiah’s life and our family.  When God is in it, anything is possible! I believe God has a purpose and plan for everyone. We aren’t here by accident, we’re here because God put us here.  God never promised that life would be easy, but He did guarantee us there would be heartache and struggles along the way; but He did promise strength through it all.

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