Dare to Dream

Sunday will be seven weeks we have lived in this hospital, and in this tiny room.

Will we make it to then… ?

POSSIBLY NOT.

That’s right. You read what you read, buddy.

An actual doctor came in, looked over his chart, chatted with us, and literally said the words, “I think it’s time for him to go home and grow before heart surgery.”

I almost dropped him… which would have kind of negated her words in the first place, so thankfully, that didn’t happen.

Now, we might hit the seven week milestone just because checking out of the NICU is a long drawn out process, even for kiddos less high maintenance than Jack. It’s not like a hotel, where you take a cursory glance at the closet and pray you don’t forget your phone charger on the way out.

No, there is a loooonnngg list of things that must be done. Our case manager has to set up our upcoming doctor appointments with cardiology, nephrology, GI, and his general pediatrician, who he will see frequently, even more than the average newborn.

We also have to take the CPR and car seat safety class (check!), and watch four different videos (purple crying, babies sleep on their back, general care, and caring for his g-button).

I also have to speak with someone from Jackson’s medical supply company. Since he will be going home with the button, that requires a LOT of stuff– feeding bags, tubing, extension tubes, decompression tubes, formula (which insurance PAYS FOR! Over the moon about THAT)… lots of stuff.

Plus, he’s also going home on breathing treatments, so he’ll need the mask, albuterol, and tubing for that.

He will also come home on two heart medications, and an anti-anxiety med, which keeps his breaths down.

It’s a lot, which is a major understatement. I’m overwhelmed by all the equipment he needs, and we’re not even home yet. I’m going to need some sort of organization system, perhaps a tackle box, or something scrapbookers use. I need to check out Hobby Lobby.

But, I don’t care. My children are going to be living under the same roof. My son will sleep through the night without strangers coming in his room to empty the laundry, check his equipment, write down vitals… he just gets to be with his family.

He gets to be Jackson. Not Baby Engel in A16. He’s Jackson.

My Jackson. And, he’s coming home (and, now that I’ve thoughts those words in my head, he’s probably not, ha!).

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