making moves.

day 125.

Today is a big day. After almost 18 weeks in the CVICU, Jackson has been officially cleared to move to the progressive care unit, or the PCU. Orders have been put in, teams have been notified; now all we have to do is wait.

The progressive care unit is definitely a step in the right direction for Jackson. It is a unit where children go who have more chronic issues than acute changes. Where kids go when they are more stable and don’t need the constant supervision and poking and prodding of an intensive care unit. Where kids go while they work toward getting home.

It’s a huge step forward. And I’m terrified.


We have been in the CVICU for the majority of Jackson’s life. More than three and a half months of his short four month time here on earth has been spent in this unit with people who have come to know him and love him like their own. They know his quirks and his ticks. They know what makes him happy and what makes him sad. They know that he prefers to lay on his left side over his right and that if you can’t get him to calm down, sometimes he just wants to hold your hand or have his head stroked.

And they know us. They have been there through some of the highest highs and lowest lows that we have experienced as parents. They have seen us through some of our darkest times, trying to shield us from reality and the life-altering of situations when they could and assuring us that everything would be okay even when they weren’t sure themselves. They have celebrated with us and cried with us. They have become our family.

Again, this is a big step for Jackson in the right direction. More importantly, it’s a big step for us as a family in the right direction as far as getting home. And we know that the PCU will take amazing care of Jackson and they will grow to love him just as much. But, like going to a new school or starting a new job, making new friends is scary.


The move is planned for one day this week, but knowing the hospital it may or may not happen when expected. When it does, you can be sure there will be tears – both happy and sad – as we move away from our current CVICU home, getting us ever closer in the process of coming to our forever home.

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3 thoughts on “making moves.

  1. On this journey of getting ready to go home, you have met some amazing folks! People that will stay in your life and heart forever!

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  2. Really excited for you all, Ashley! Jackson is growing, and I’m so glad you’ve included us all in your journey! Many prayers and good vibes going up for him through this journey.
    If you can text me your address, I have a Christmas present for Jackson!!!

    -Stacey Cutler

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