Disclaimer: I know, I know. Charlotte is doing so well. This post is not about reality, but about the perception of reality. This is what preemie parents live with. Sometimes it is so strong you can barely sense the world around you. Other times, hours pass without even thinking about it. Some grow out of it. Some don't. But this is it.
I call it "The Fear."
Peter calls it "Expectations."
I live with fear. He lives without expectations.
Either way, it's how we, as parents of a micropreemie, cope. It's how we get through the day sometimes. Now that winter is officially here, it's how I make it through most days. Some may think we're crazy. Others might enable our coping mechanism. Other preemie parents give a knowing nod. "Free-range" parents probably have a stroke.
Every day I wonder if today will be the day that Charlotte gets so sick she'll go to the hospital but never come home. Every day I look at her and wonder why she made it through the night. It's a blessing, in some ways. I appreciate every.single.smile. I anticipate her, I know her moods, I know when something.is.just.not.right.
In other ways, its a curse. I'm terrified of becoming "too" attached. I can't make plans for her. She'll be one in February. But I can't think of what her birthday will be like. I can't. Because I live with the fear that she'll never see it. Peter has no expectation of celebrating her first birthday. This is not to alarm you-- Charlotte is as good as ever. She's healthy, she's making significant progress. But as you may learn, you never trust a NICU baby. A simple cold put her in the hospital for a week. What will the flu do? What would pneumonia do?
The frightening thing about "the fear" is that just as you begin to convince yourself that it's way out of control, something happens. Your child goes septic or stops breathing or has a horrible day or night or moment. And the fear is back.
And so every day, we wake up, never knowing if it will be the last one with Charlotte. Maybe it's a good thing. Maybe it will cripple us. But it's the reality we live with, every day. The majority of babies born at Charlotte's gestational age and size do not survive. Charlotte has.
But the knowledge that she's "beating the odds" nags at you; it eats away at the back of your mind, and you wonder-- how many times can she win?
I wish I could tell you it gets easier, but as a mom to former 26 week twins it doesn't. They are 2 1/2 now and doing great, but I still get nervous if they are sick, I take them to the doctor at the first sign something may be wrong and usually its nothing, but the times that its something def. make up for the times that i took them for nothing. Their pediatrician told me that i most likely suffer from PTSD from the boys being in the NICU for so long and that the only way to cure that is to have another baby and that just won't be happening. I have enjoyed following your blog and reading about Charlotte, and I look forward to reading for years to come!
ReplyDeleteThank you again for your words and for capturing the experience of being the mom of a micropreemie. I also look forward to watching Charlotte grow for many years to come. I also hope that when the time comes, you are able to celebrate Charlotte's birthday because you deserve to celebrate how far you have come and the grace with which you have gotten here.
ReplyDeletePTSD is a real concern. I have read a few articles that address this very issue. How scary!!! But as a 24 year NICU nurse, I am positively certain it DOES exist. And sometimes we see it long before the baby goes home. Though I am not too sure that having another baby is the cure...
ReplyDeleteStay strong and continue the fight. We all know where Miss Charlotte gets her determination from and she will never lose sight of it!
girl, we're on the same wave length. :)
ReplyDeleteat the Preemie Parent Summit I went to they discussed the PTSD of preemie parents. They said 75% of us have and continue to experience PTSD. That's why grief counseling is suggested for all couples.
Fear man, it sucks.
When we lost our baby this year, I remember wishing to have just a day.
ReplyDeleteBut then again, I know my own limitations and am not nearly strong enough of a person to be a parent of a micropreemie.
Charlotte is lucky to have you as a mom :)