Heart

Heart. You gotta have it! And we are leaving Boston with Kaden’s heart in better condition than when we arrived, and probably ours too ❤️ We came with the intentions to dilate the mitral valve in the cath lab, and instead the surgeons at Boston Children’s were able to repair his valve & left ventricle in his first open heart surgery.

Prior to discharge, Kaden needed to get a sedated echo. Our goals were to have the pressures through his mitral valve be half of where they were when we started & the pressure on the right side of his heart to be low too. To be specific, Cardiologists gauge pressure through numbers on a scale of mild, moderate, severe, and critical. The gradient across Kaden’s mitral valve has been 12-14 (moderate to severe) since he was born. Dr. T wanted to see these numbers drop to 5-7 (mild to moderate) after surgery.

Results… Currently, the gradient across the mitral valve is 3-4 … MILD!!!!!!!!!! Wooooooooo!!! The echo proved the pressures in the right side of the heart were also low!! Exactly where we had hoped! AND the echo showed NO STENOSIS in his aortic valve. This is where his disease originated, and it has miraculously been healed!!!!!!! This doesn’t mean it may not come back, the nature of the disease is stenotic (sticky) tissue. However, for now we will celebrate this victory and Praise God for orchestrating Kaden’s healing. It’s a true miracle.

Kaden has recovered very quickly, and just two weeks following his surgery, we are headed home. Thank you again for following our story, and more importantly praying for our son. His story is a testament to the power of prayer and we must give all the glory to our Maker, the Almighty Healer.

Although this has been the most difficult thing we have faced as a family, Lord I know we are the clay and you are the potter. “We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves”. 2 Corinthians 4:7.

 

OHS | Post Op Day ?

If a picture is worth 1,000 words, picture this ….. A mother and father desperately waiting day after day to do just one thing, hold their sweet baby boy after his first open heart surgery. These were long, heart-wrenching days.

In the hospital, there is no real concept of time. You don’t see the sun come up or go down. Hours turn in to days and days turn in to weeks. This is partly the reason I had to title this post, “Post Op Day ?”. The days have kind of blended together, and also so much has happened so slow, but so fast.

Once Kaden was extubated, they said, “ok you can hold him now”. With tears of joy streaming down my face, I was able to prep a chair close to his monitors so the nurses could move our son’s delicate body to my arms. This one moment was worth the prior 1,000 hours of pain.

My heart is smiling bigger than my eyes.

My heart is smiling bigger than my eyes.

As he slowly came to, our desires to see more of his personality and manorisms grew. His voice was so hoarse that I actually just wanted to hear him cry. This may seem like an odd desire… I didn’t want him to be in pain; I just wanted to know he was still himself. We were unsure how or if the surgery would affect him developmentally.

Nate just wanted to hear “dada”. And what dad wouldn’t, right? But these two have a special bond. Kaden and I are always together and have a deep bond through nurturing and affection, but when he sees his father, he lights up. I have never seen anything like it. It’s beautiful. Well, Nate got to hear those words too.

Dada

Dada

As each day passed, Kaden got progressively better. The doctors were astonished with how strong his vital signs were throughout this process. Even in and out of consciousness, his heart remained strong. Even with the irritation of all of the tubes and wires sutured into his body, Kaden proved to be a fighter. These days were hardest on us. He didn’t appear to be ok, but the doctors consistently reassured us he was doing great.

These days also had us thinking about so much. There is so much pain in hospitals, physical pain and emotional pain. If I had a dollar for every tear we witnessed and every child we heard cry over the last few weeks, I think we could resolve world hunger. I also appreciate the feedback we got from our last post. Being transparent, that is just who we are. We are not a couple who focuses on the negative circumstances, but it is natural to feel them. I have read about people going through tough stuff, and making references to wrestling with God…. But isn’t it wrestling with ourselves? Wrestling with our own thoughts? If one thing is apparent in reading Kaden’s story, God is faithful. He is reliable. He is consistent…. Let me repeat, God is faithful!! He is reliable!! He is consistent!! It has been hard fighting this battle, but in the end we wouldn’t change a single thing. Nate said these first seven months of Kaden’s life will be the crux of his story.

Kaden was released from the ICU on Monday to the Base Cardiac Floor. The goals here were to monitor feeds, manage care, and continue healing. Kaden made a quick recovery here!! He has literally had a supernatural appetite, quickly taking to his routine with bottle feeds and baby food.

9 days following Open Heart Surgery, Kaden is sitting and reaching for bubbles.

9 days following Open Heart Surgery, Kaden is sitting and reaching for bubbles.

Our littlest love.

Our littlest love…. Heart baby, happy baby.

Kaden was released from the hospital shortly after these photos were taken. We can only thank Jesus for this immaculate healing.

We will be in Boston for a week, anticipating our family being back together. Our final follow up with cardiology is next Tuesday. We will provide the details on his heart after this appointment. Keep praying!!! We couldn’t have made it to this point without our family and friends. Thank you Jesus for those you have surrounded us with. We see your loving arms in our community.

 

Faithfully,

Nate & Erica