I found this on another
preemie mom's blog and thought it was beautiful and sums things up very well. It also fit into this months prematurity awareness theme:
When they are born, no one offers congratulations. No one calls. No one knows quite what to say. It's as if there was a death in the family, the death of someone they all knew about but hadn't seen in a number of years. A few days later, after the critical time of knowing whether the child would live or die had passed, the calls come. Still no congratulations. Instead, they are "status" calls. "How is she doing?" "What do the doctors say?" They listen but I'm not sure they understand.
Because you are now the mother of a premature baby. Your child has been in the NICU for such a short time, but you already speak the language. Your dialogue is peppered with terms like bradys, desats, bili levels, IVHs, and Hyper L. The nurses have taught you well because you now understand the terms, roughly what they mean and the general impact of these terms on your child's condition. You know how to touch your child, how long to scrub for, and where to find the tissues. You have been introduced to the pumping room, the protocol involved with the collection of your milk, and how to treat all your equipment. You are fragrance free for your preemie, going so far as to wash clothes in baby detergent and rinse with vinegar. And you now awake every three hours and think of your little one as you hook up the horns for the routine pumping session.
You have changed. You have somehow left being a normal person and are now an "other". And you stand in your "otherness" with solidarity. After all, your preemie is an "other" too. And all those other parents and preemies in the NICU, all "others" in their own lives, are just like you. You belong.
You didn't want to belong. If there was some way to get out of this, some bargain to make with God, you tried it. You pled with the doctors to just postpone matters until tomorrow, because every little day counted. You listened to the preemie statistics as presented by the neonatologist and you still wanted, believed, your child would succeed at graduating from the NICU earlier than they predicted. Someone else's child will be there that long, your's will come home next week.
And then reality sets in. Nurses and doctors alike keep iterating the same tired lines. "Look for her to come home around her due date." "One step forward, two steps backward." "It's a preemie thing." Some were callous, careless with words. They hurt. Others propped you up when you felt like you couldn't take it. They hugged, they handed over tissues as you cried, happy or sad. One made you feel golden when it was the day to start Kangarooing your little one. She carefully, tenderly placed your itsy bitsy child in your trembling arms, patted you on the back as you asked "Am I doing this right?" and guided you in your first holding session. She took your picture together, the first Mommy and baby picture. But you were still there.
Weeks passed. You were in a routine. You knew the ins and outs of the place, the nurses you liked and the nurses who treated your child well (and you knew already that those categories were not necessarily filled by the same people), and when that nice doctor would be back in. You knew to disdain the residents since they were not there for the babies (it's just a stop in their rotation). You knew the best times to find an open pump, when the cafeteria closed, and exactly how many CCs your child needed each feeding. You made midnight calls. Two a.m. calls. Four a.m. calls.
People began to treat you differently, like you didn't have a child. Your friend's careless comment that at least you didn't have stretch marks stung. Your colleagues forgot your baby shower. You went back to work and tried not to think about your baby, laying there in an isolette, isolated and alone. You hurt for her to have someone else hug her when you couldn't be there. And still, time marched on.
In the beginning, the strides were huge. Your child made amazing leaps. As time went on, the milestones were fewer and farther between. They were no longer big elements, now they were finely tuned aspects, like weaning down the vapotherm or having no aspirates.
While the nurses and doctors counted days of life, you counted in weeks. It was more manageable that way. You ignored the omnipresent due date and tried to reassure yourself she would come home earlier than that.
And at some point, you became a regular. People were tired of you. You were tired of them. All you wanted was your baby, then. You felt like they were keeping her hostage. You just wanted to take her home so you could be together, alone, with no one else hugging her but you, no one judging your parenting skills, no one eavesdropping on your whispered conversations with your child.
But she stayed. A hiccup arrived, an itsy bitsy little thing in this vast continuum. You inquired about it but were rebuffed. You inquired again, and got rebuffed again. It became more important because no one could answer the question, no matter who you asked. And this itsy bitsy grew into your mountain. It was a developmental thing compounded with a real medical concern compounded with medical nonchalance. And your child who had sailed through the NICU was suddenly still there, still attached to monitors, a newborn in size and age but not developing the skills to be able to leave. And she was unable to develop the skills because the situation and protocols would not allow her to do so. At some point, your tiny voice became a loud, raving Mother -- and you fought for your child. Was it the right thing to do? Who knows? -- but you do, you know. Of course it was your job to fight for her, to call the doctor on the carpet for not noticing this issue. It didn't make any friends, but you fought for her. And through all the problem solving, a solution was found. It wasn't the complete understanding of where your preemie was medically (that would come later with a specialist, a specialist who was never consulted regarding your child while in the NICU, even though it would have been an easy phone call to make), but it was enough to allow her to come home.
And she did. In a rush. One days' notice. She came home on a wing and a prayer, during a fortuitous good spell regarding his medical issue. Finally, long past her due date, she was finally home. She was held by Mom, Grandma and Grandpa, Aunt, Uncle, and Cousin. She saw her house, heard her cats, slept while Grandpa drilled and hammered. She snuggled with Grandma watching Seinfeld. She felt cat whiskers and knew her friends. She was home, where Mommy had wanted her ever so long.
And you began the next chapter, life after the NICU with your preemie. Welcome to the "other" world, Mommy.
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