Life at Home

In many ways life with Nathan at home is like having any newborn. I can’t get enough of his new baby smell, cuddles, cuteness, and occasional coos (that’s a big deal for him). I‘m also sleep deprived, irritable, stuck at home because he naps a lot, constantly looking for a quick ten minutes to get a shower, and having neck pain from holding him A LOT.

In other ways having Nathan home feels completely unnatural. The most obvious is the feeding pump, G button and extension tubing coming from his tummy. The fact that he sucks a paci for 5 minutes max while his belly is being filled. And needing to hold him in certain positions to keep his airway nice and open. I’m still occasionally shocked when I see the IV pole and medical equippment in my house.

Either way you look at it – new baby or high needs baby – it’s a hard season. I’m trying to live in today and let tomorrow worry about itself. God is blessing us with lots of sweet baby moments right now. Eventually we will need to make adjustments for our family – balancing our time between life as it once was and life with Nathan’s unique needs. In the meantime, I’m just going to keep kissing his chubby cheeks and letting him sleep on my chest.



Here are some pictures of the normal sweet baby stuff going on at our house.



This one is thanks to Mac making sure he has a Mickey Mouse.


Don’t tell the “Back to Sleep” police. This is his highly positioned placement in bed.


Enjoying some sleep sucking cause the paci just so happens to be in the right spot.


Oh and there is one upside to the feeding pump…he’s on continuous feeds at night so that means little man is sleeping for eight hours! Mommy and Daddy need to get up to add milk but its nothing like soothing a baby back to sleep.

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

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