We Upgraded

Something happens when your baby moves out of the plastic crib, and into a real one.

Life. Life happens.

Suddenly, we’re not living day-to-day, just trying to make it. We’re not living life on the time-table of nurses and doctors and the schedule of the hospital. The lights don’t go off at 9, and come on at 7.

We decide, because, we’re home.

It’s daunting and terrifying and jarring and surreal and different being at home, making our own decisions. It’s also glorious and freeing and normal.

This feeling we feel now, as a family, is so under appreciated by most people. The fact that I can dance around with Jackson, wire-free, makes me smile absolutely every single day. Feeling my daughter’s sense of security come creeping back makes me tear up. She doesn’t feel the need to be attached to some part of my body, because she is finally coming to understand that we’re not leaving again.

The summer is over. The worst summer in the history of my life, and my husband’s life, and Sydney’s life, is over. The only season Jack has experienced so far will hopefully be the worst one he ever will. Hopefully, from now until he takes his last breath as an old man, every summer from here on out only gets better.

It looks like it’s happening that way, too.

Yesterday, for the first time in his life, he had a doctor’s visit that didn’t result in us hearing some terrible new news, or that required extra testing. Everything wrong with him has been found. It’s being managed; quite well, I might add.

He is doing everything he is supposed to for his age, except hold his head up, due to his former inability to practice tummy-time, because of his heart surgery. He’s been cleared for that now… however, he hates it. Ha!

But, he tracks objects with his eyes. He turns to sounds. He smiles. He grasps things and pulls then to his mouth.

His heart is working beautifully, and in today’s ultrasound, it looked gorgeous. It was just the right size, it was pumping blood quietly, helping it all go in the right directions. In the words of his cardiologist, his heart is now the “least of our worries.”

It’s about damn time.

Because, our other worries are not that big. His one kidney? Working like a champ. His eye? Closing on its own. His hernia repair still looks amazing. I’m becoming a whiz at handling all of his feeding tube supplies and care– it’s not near as big of a deal as I thought it was going to be. We can do this. Plus, he starts speech therapy to work on his swallow next week. His hand? It’s all he knows, and it’s all he will know. He’ll be fine.

And, when he has questions, worries or concerns, he has a a great ally to turn to later on. For that, I couldn’t be more grateful.

We are back home. We are beginning our journey as a true family of four, under one roof. A journey that should have been started much sooner, but life happens. Stuff happens. Shitty stuff happens.

But, we pushed through. And, we made it. It’s easy to look back and talk about it now, but when we were in the trenches… I didn’t think I was going to make it. I didn’t know if my marriage was going to make it. I didn’t know if our daughter was going to make it.

We’re tough, though, almost as tough as Jackson. We are slowly becoming the family we were meant to be, with some slight modifications.

My baby survived 90 days in the NICU, three surgeries– including open heart surgery– a heart cath, two swallow study functions, two MRI’s, and a bronchial scope. His bill came out to be over $908,000.

He’s our fighter. He is the reason we, as a family, are still standing. Because, how could we have given up, when someone so tiny was fighting so hard?


We ❤ you, our brave little man.

2 thoughts on “We Upgraded

  1. Dr. Christopher Keller says:

    Thank you for posting what I hope is the denouement to Jackson’s trials to get home. I/we have all been hoping and waiting. It is damn exciting to hear you are wire-free and living the normal infant life (which I can only imagine is exhausting regularly).

    The technology is going to change and this telling of Jack’s first days is precious. Archive your words, pictures and all of the comments so you can embarrass Jackson in front of his girlfriend.

    That almost million dollar number you wrote is a kick in the gut. I do not know how your military insurance works, but if there is anything that your family has to burden, there are plenty of us here that would be honored to help, or work in raising support.


    • Rachel Engel says:

      Luckily, LUCKILY, everything is covered. Even his formula, since it is out through his feeding tube, is paid for and sent to use by his medical supply company. We are incredibly grateful for military insurance… I honestly don’t know what we do without it. File bankruptcy? Who knows, I’m just glad we don’t have to worry about it; we’ve had enough to worry about lately.

      We’re just happy to be HOME.


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