(I've really struggled with sharing this part of the story. I am scared people will look at Emma differently. That they will look at her & wonder if maybe there is something wrong with her. That people will think she isn't beautifully & wonderfully made. But, I know that this is part of her testimony, of my testimony. So I'll share it, with the hope that God's grace will reign over you as you read it. That His grace will meet Emma every time someone meets her. That she will feel His love every time there is a questioning look her way. That at the end of the day, she will KNOW that she is made perfect in His image)
Wednesday, May 29
Wednesday, May 29
When we get to the hospital, Emma is off of the heat lamps because she is doing so well regulating her own temperature. She still has the IV and feeding tube in. We spend some time talking to the family care coordinator about Mike taking part in the family medical leave at his work. She gives us the paperwork that needs to be filled out.
I’m still pumping as often as I can, but not getting much of anything. Trying to keep those hormones happy, but it’s not easy.
Then the floor seems to give way & the walls start to close in…
As the doctor walks in and tells us that they want to do chromosome testing. Because of how swollen Emma was when she was born, they know the swelling happened in utero, so it is a concern to them. They tell us that she has too much extra skin around her neck and her nipples are further apart then they think is normal. All of these signs point to a chromosome or DNA disorder.
The specialist doctor comes in and tries to reassure us. Telling us that because we are at a specialized hospital, this is all normal testing. They have to go over everything with a fine tooth comb to rule out all disorders.
My heart stops. I’m sure it literally stopped. I couldn’t breath. I remember feeling Mike put his hand on my knee & it felt like his gentle touch was squeezing the life right out of me. I’m so uneducated on what they’re talking about, that the first thing I think of is downs syndrome. How is any of this part of God’s plan? How can my sweet girl have something so serious?
I’m feeling so overwhelmed & frustrated. Once the dr’s leave, the nurse tells us not to freak out that this is all routine for NICU babies. I don’t believe her. I have never seen the DNA dr in Emma’s room. Which tells me that none of the other babies need this testing. I know I’m wrong, now. But then, it felt like my E was the only one they were questioning. Mike sends a picture to his brother & asks him to pass it along to his sister in law who is a NICU nurse in Chicago. She tells us that is very common for these tests to be run on preemie babies. But that Emma looks fine. Biggest indicators for downs are face shape & features, but from the pictures she’s looking at, Emma doesn’t have any signs of it. It provides some reassurance, but my head is just running a mile a minute to every different possible outcome of this testing.
Looking back, I think we would have declined this. We said yes quickly, without thinking it through. Emotions do so much of the talking when your baby is in the hospital. By the time your head catches up, decisions are already made.
We feed Emma a bottle, but she only takes half of it so the rest gets sent down her feeding tube. Once she is asleep, we leave. I need to get out of the hospital.
I remember sobbing. Almost uncontrollably once we were in the car. Mike had his hand on my leg & I was looking out the window. I didn’t want him to see what my eyes were sure to reveal. I was angry. So incredibly angry. I was feeling defeated. Ashamed. Worried. I tried avoiding his questions for as long as I could, until that “oh the blood” song comes on. Then I just can’t hold it in any more… He asks what’s going through my head & I tell him. I tell him that I’m angry. But not at the doctors. I’m angry at God. I don’t understand why any of this is happening. Just when I think I have my grips around this, He blindsides me. I’m not proud of this. I am scared that I just gave my anger those words. That I just said it out loud. I remember Mike just looked at me. Almost as if he didn’t quite know how to react. So he did what he knows best. He reassured me that God was in control. He prayed that this test would come back negative & we could put this behind us. We could keep moving forward.
Friends, I told you yesterday that God knew I needed Mike to be with me this day. I don’t want to think of how I would have handled this if he wasn’t there that day. If I was alone….
We walk around the mall. Not really talking. Trying not to think. We pick up some button front onesies now that Emma can wear clothes. We eat lunch before going back to the hospital.
We walk in and see that she has been upgraded to a crib! The heat warmer bed is gone because she is doing so well regulating her own temperature. Her IV is back in her forehead. The nurse says her arm was looking puffy so they switched it again. They are starting to lessen her fluids, which hopefully means the IV won’t be needed much longer. M gets to feed her, but she still isn’t doing great with the bottle.
Mike’s parents come up that night to pick him up. I don’t think we went to dinner. I was ready to just go home. Or to my cousins house, since that was home now.
My head hurt. My eyes hurt. My heart hurt. Everything just hurts. My body is aching because of the stress and the anxiety. I just want to sleep. And I just want my husband to stay with me. And I just want to take my daughter home. I just want all of this to be some sick, twisted dream.
But it’s still not…
to be continued…