Everyone who writes about premature parenting says that the final days/weeks of the NICU journey are the hardest. It’s easier to deal with your baby being in the hospital when they’re tiny, red, wrinkled, alien-looking, and relying on machines to help them breathe.
But when they start looking up at you with pleading eyes, when they wake at the sound of your voice, when they cry when you lay them back in their crib to leave, when the only thing keeping them here are mysterious “episodes” that happen in the night, it feels like torture.
The nightmares have started up again. Typically they consist of my sudden realization that I have left my baby somewhere. I awake and attempt to retrieve my child, only to find that an entire year has elapsed. I try to explain my absence. Then I wake up from the dream.
Babies in the NICU take two steps forward, one step back. He gains two ounces, then loses one. Off the cannula, then back on. He takes two or three bottles a shift, then none. He gets exhausted.
I wonder if he gets as sad as I do. Does he miss me? I had another snotty, ugly cry the other day. Thankfully only my husband was there to witness it.
Before Josiah can come home, he has to be able to: go 7 days with no bradycardia or apnea (we had to restart that clock yesterday), take all feedings by mouth, and pass a 90 minute car seat test.
I was so hoping, and the doctors and nurses as well, that he would be home before the new year. It’s not looking good. I’m trying to be patient.
To keep my mind busy I’ve been working on decluttering. Today the whole family joined in on the fun. Throwing stuff away always makes me feel better and clears my head, but it’s also a way that I can do something for my son. Other than pumping my milk and changing his diaper a couple of times each visit, I do so little for him and it’s frustrating. Love is a verb.
At least I can prepare the nest.
Praying for you all.
Hello. I stumbled on your blog today as I was googling pprom – something I experienced almost two and a half years ago. After 3 weeks on bed rest, our little boy was born and we spent 96 long days in the NICU with him. As I read your posts I have such a deep empathy for all you are feeling and enduring with your precious little one. The constant shift between grief and happiness, hopefulness and frustration and all emotions in between is so hard to explain.
I just wanted to offer you my encouragement. I think you are amazing for balancing caring for and being there for your other children and your little one. And for what it’s worth, know that someone who understands the worry and waiting, the A’s and B’s , the feeding, the pumping (oh the pumping!) and the carseat test was thinking of you tonight and cheering you on!
Take care 🙂
@Betsy – thank you!
@Alison – thank you for your kind words, it’s a whole new secret world that I never knew about until now.