Christmas in the nicu

168 care times

about 250 of the best smelling dirty diapers (yup, I officially became a mom when I realized my kids diapers don't stink)

4 baths

20+ nurses

168 pumps

3 spilled milks (don't say its just spilled milk if you have never pumped for a baby in the NICU)

millions of kisses

and one Christmas

Realizing a week or so ago we hadn't made nearly enough progress to make it home for Christmas was heart breaking.

Today, when Christmas rolled around my heart broke a little more. We went out to the car to see it covered in about 8 inches of snow. We couldn't even get it out of the parking lot. So we went to take the shuttle, which was not running because of the terrible roads, tears started forming in my eyes thinking of my guy alone in his crib on Christmas. Finally, we talked a taxi into taking us, hurray!!! I often find myself wondering how I am going to muster the strength to make it through one more day. I have felt every single emotion possible in the last three weeks being in the NICU.  I have found myself envious. 

"You are just going to judge me." I hear a woman say in loud sobbing tears.

"No we get parents here all the time that have serious addictions, and I would never judge anyone for that."

Thats what I hear on the other side of the curtain, while I'm holding my sweet Treg, drifting off to sleep. The mom next door was talking to the case worker, not realizing I could overhear. As the days go past the pieces of her story start to come together.

"I brought in milk to be tested."

"Im sorry but you have to pump the milk here."

"don't worry it will come back fine."

A few days later they are gone, discharged.

Its hard to see families come and go. I try to remind myself that although Treg may have not accomplished his goals of weaning off oxygen, or increased his bottle intake, that its okay the only thing he did was breathe; because for my guy, that might be the toughest struggle of all. And boy is he tough. These are the times I have to say to myself that Treg DOES have down syndrome, because to me he is just my sweet angel baby. Today Jordan had to remind me of that. 

"I cant believe its been 3 weeks."

"I can, thats a long time."

"most preemies are here that long."

"He isn't even considered preemie, since he was over 37 weeks."

"Yeah, but he's considered downs.." he smiled

I paused for a second.. and then couldn't stop laughing. Jordan has the very best ways to remind me to lighten up, and laugh. 

For a baby with downs, his progress is incredible. Im currently typing this next to his crib side, watching him, he has a light shining on his bum today. Its always something new with my little warrior. His rash has gotten progressively worse, today it began to bleed. So he is naked tummy down, with a billy light shining on his bum, drying it out. He hates it so much that he has already taught himself to roll over, so that he is not stuck on his tummy.

My guys spirit is infectious, his sweetness is almost palpable. I can come by anytime of day and see at least one nurse at his crib side, just smiling. And how lucky am I, I get to siphon that energy daily. Treg makes me so proud to be a mommy of a baby with downs. When I first found out, I cant deny that I was worried what others might think of us, how strangers would feel uncomfortable or awkward when we went places, I thought of his set backs in life. There are set backs- its miserable watching my sweetie struggle to breathe, have to learn to eat, it hurts. It breaks my heart to see his frustration when he tries to breast feed. I sit in the NICU chair, lay him down against the pillow and it begins, he grasps at his face, clawing his oxygen out of his nose, he thrusts his body back, and begins to whimper; he wants the bottle. I want that special bond. But I want him eating and home more, which means bottle. It makes me jealous to see friends babies go home after 2 days in the hospital. why cant that be my boy? But the best views come from the toughest climbs. Baby T is quite the view, and he is the closest thing to heaven I've ever felt., and I don't think there is anything quite like this love out there.