We have a new vocabulary now in the Atkinson household.
It has words like NICU, NG tubes, residuals, de-satting, rounds, amp&gent in it.
these are all the things we get to worry about in any given day with Kendall.
We go to the NICU to visit her. There are currently three other very sick babies in there with her. There is an intermediate care nursery across the hall where only the mildly sick babies go. And all the other babies get to stay with their mommies in their rooms. She is in a very good NICU. Her nurses love her to death and probably know more about my daughter than I do.
She wears a little beanie hat that has wool strings that you pull tight to keep her CPAP mask tight to her face. This causes her to have black and blue swollen eyes. There are patches of rubbery bandaid like materials on both her cheeks so that the CPAP machine strings don’t chafe her little cheeks. Her nose has plastic tape all around it so it doesn’t get irritated by the nosepiece of her CPAP mask. She has a bright orange feeding tube that is taped to her chin and goes in her mouth and down her throat. Because she has so much air being forced through her system, she is constantly foamy at the mouth and slobbery, and usually has thrown up a little too in the mix. She has an IV in one arm that is taped to a little board to keep her from pulling it out. She has about 5 leads coming off of her chest to monitor her heart rate, temperature and respiratory rate. She has a red light taped to her foot to monitor her “pulse Ox”, which is a number we also watch very closely on her screen. She has a blood pressure cuff about the size of a large bandaid attached to one leg. Both of her heels have little bandaids on them because they are always needing to draw blood from her little veins.
She is very long and very skinny.
She has ginormously long fingers and toes, and her nose looks a little like Kealey and a little like my littlest brother, Doobie. (I have no idea why I call him that I just do).
I cannot tell exactly what my baby girl really looks like – I just know she is mine and I love her and I want more than anything in the world to just pick her up and hold her and run away from this horrible place with her and make her better all on my own. But I cannot. I have to wait to be told if she is having a good enough day to be held right then. I have to hope that in the ten minutes it takes to get her unwired and rewired and in my arms that she will remain calm for at LEAST ten minutes to make this ordeal worth it to hold her. And that is all I can do. I try to get as much of her skin to touch as much of my skin as possible. I try to will her to slow her breathing down, to sloooooowwwww down…..to get oxygen in, bad stuff out. I tell her I just want her home, please get better, mommy loves you and we just want you to come home SOON.
I try to hum or sing to her but it just makes me cry, and i am not a good hummer or singer anyways. It probably wouldn’t really help anything even if i could make it through a song. So we sit and rock for as long as her little system can take it. And Ben is so patient – just sits there and lets me hold her and try for a few seconds to pretend like life is normal – like maybe we are just sitting on the couch holding our new little girl while alarms are going off all around us and nurses are all over and IV’s are getting occluded and then we have to put her back and watch her struggle to get calmed back down and then we have to say goodbye to her so I can go lay down again and just relieve the pain and relieve the pressure so I can gather enough strength to hopefully come do it all over again in a few hours.
And then on Sunday morning they want to talk about when I get to go home and I can’t I can’t I can’t go home because my baby isn’t going home with me yet, see? But no worries because in all actuality I really am not doing that good with all the blood loss and I may have popped the spinal patch because i am in so much pain still and no one can figure out what is wrong with me and I want to scream at everyone – are you STUPID??? I am separated from my BABY who is SICK – THAT is what is wrong with me!!! Just bring her to me, and let me lay with her and feed her and breathe with her and we will both be better and then we can all just go home.
But they won’t listen to me, and they find reasons and ways to try to make me feel better so that I can go see my baby again and they kind of help but I know that all I need is HER, and for her to be WELL. So I get to stay another day. And friends come and go and bring food and cheer and it helps and all the while I feel disconnected from my self, from my body that aches, from life and a little part of me is always down in the corner unit of the NICU, watching over my baby girl as she struggles to breathe and gags on her tube and has no idea who i am or where she is.
Monday morning I wake up to a very kindhearted nurse who tells me that she knows today will be a hard day for me and its ok to cry, to cry for hours, and to be mad and angry and upset and whatever the heck else i want to be because today will SUCK having to leave my baby at the hospital while I go home. And she is so so so right. I do not even have the energy to try to sit up. It is all hopeless and all futile. I just lay there and cry and I don’t even have kleenex in my room because they took the bassinet out of it the first nite that has all that stuff stocked in it because they are trying to be sensitive to the fact that I don’t have a baby to put into the bassinet so it is gone and with it, the kleenex. And this poor nurse tech comes in to find me sobbing all over myself and she just needs to take my blood pressure real quick and get the heck back out of dodge but she comes back, with much trepidation, to bring me a box of kleenex and the kindness overwhelms me. And I am crying again, and listening to crappy sad songs on my ipod which are making me cry more and cry harder and everything is JUST TOO MUCH TO THINK ABOUT. I just want to get up and look pretty for my baby girl and be happy for her so that even if she doesn’t understand, I can leave her in a good mood and make her think that mommy will be ok, so she will be ok too and she will be home before we know it.
So in spite of all the attempts at procrastinating, we go down to the NICU for one last time to say goodbye to Kendall and to check on her and then its over and we have to go and she needs to calm back down again and I can’t do it. ITs too unnatural to leave, when she is still there.
And as we’re leaving it starts to snow. And three blocks out of the hospital we pass the Kendall County sign and I see her name and I start sobbing and I sob the whole way home and I just want her home with me.
But she is still residualing and her O2 sats are still dropping and she is still tachypnic so we learn more vocabulary words and we try to sleep in our own beds without our baby girls around and this feels so strange, like when will I wake up?
Except I am awake.
And its time to go back to the hospital.
Maybe today will be a good day for her.