Sometimes when she cries, which really sounds more like a baby bird squawking, I hurt.
Not so much an emotional pain, but a real ache I can feel deep in my bones. I wonder if she is in any pain. Does the back of her head ever hurt? Can she feel the hole in her heart?
Probably not. Thank the good Lord. But even the wonderment of Audrey being in pain brings a wince across my face and a twinge in my own able body.
The hospital has informed us of SoonerStart. This is a non-profit Early Intervention program for children up to 36 months of age with special needs and disabilities. The hospital recommended we get started in the enrollment process.
Chris did a bit of research to determine how to get started and who to contact, forwarded me the info and asked that I give them a call. That was on Monday.
I didn’t make the call that day. Nor did I on Tuesday.
Finally, Wednesday morning, I found the strength to dial the number. As it rang there was a part of me that wanted to hang up and run. “Perhaps I’ll do it tomorrow”, I thought to myself…
But I didn’t. It went through and a lovely woman picked up and helped me get started.
I said it. Out loud. Admitted to this woman that we have a baby with a brain defect. A little girl who will likely need these intervention services from an early start.
I didn’t know this would be so hard until it was. Sometimes I still don’t want to believe it is true. I want medicine to be wrong this time. I want to scream, “Why her?”
But I try not to stay there…in that thought. The truth is, it is her. It isn’t all of her, by any stretch, but it is part of her. And really, it is now part of me, of Chris, of Cooper, of our families, of our friends. Of each person who takes the time to read these very words.
And yet, no matter her “diagnosis”, she is loved dearly and deeply. Of this I am most certain.
When Cooper looks at her, he doesn’t seem to see anything but a baby girl who is very sleepy and wonders, “When is she coming to our house?” While he may not remember this time in his life, I hope that some day he will go back and read this. While so much of it is about Audrey and her life, her story isn’t complete without Cooper. Her health and what it may bring will change what Cooper’s life looks like – but I choose to believe that it is and will be for the better. That he’ll learn from her the way we all already have. That he’ll love her the way Jesus loves, without condition, with patience, with kindness.
Today, Saturday, Audrey bunny will be taken for the MRI of her head. She’ll be given a sedative and placed on a cold metal table for about 30 minutes while a machine takes intricate images of the inner-workings of her brain. We have been told not to expect results until next week, during regular business hours.
What this means is that doctors will be able to properly evaluate what is currently showing regarding the cyst in the back of her brain as well as the outlook for hydrocephalus. It isn’t going to tell us things like what particular physical or developmental disabilities she may have, it tells them what is happening right now inside that teensy head of hers.
We are so thankful she is having this MRI because this also means…she’s out of her glass house and in a hospital crib! She’s still fresh out so her temperature is being monitored very regularly and she is wrapped in two onesies, a sleep sack, a blanket and a hat…in the middle of June!
It sure is nice to be able to pick her up whenever we want. Her little body is tucked in so far beneath all this cloth, it feels somewhat like picking up a burrito of sorts. It also makes changing her diaper so much easier than the small-ish arm holes of the isolette.
Yesterday, they decided to make a change with her oxygen. It is a trick they have used many times before when babies seem a bit stuck and have stats that are inconsistent. They turned her up to 100% to give her a burst of energy. They will then wean down from there. The hope with this method is to kick-start her essentially.
I am happy to report that yesterday, we saw more of her eyes than ever before and she took part of a bottle at four different feedings. This is a big deal. Yes, she has a way to go, but she literally is having to learn how to do this. Most babies are born with this capability, she is learning it along the way. This requires patience, consistency and determination. It is also an energy drain and calorie burn for Audrey, so they determine the best times to have her try.
Because of the sedative they must give her for the MRI, we have been told to expect her to be lethargic again and not to eat much from the bottle but that it should wear off.
Some babies go home from the hospital on oxygen and monitors. We’re not sure yet if this is the case for Audrey. But they have told us what will keep her there is her ability to get nourishment not from a feeding tube. Right now there have been no conversations of when home might be a possibility. We are not pushing them for an answer and we do not want them to push or rush her in anyway.
Warriors, do you see it? Feel it? Your thoughts and your prayers work in miraculous ways. Ready for the next round?
Pray that Audrey will hang on to her knowledge after each feeding and get a little better and stronger at it each day. Pray that this oxygen “trick” will allow her to breathe on her very own. Pray that the MRI would be successful in allowing the team of physicians to adequately evaluate her brain and give us as much information about her. Pray for Chris and I as we attempt to make it through each day, balancing our two children yet finding time to be us. And finally, but most importantly, praise. Praise for the big and small miracles that Audrey has already been blessed with…that we have been blessed with.
We are grateful for so much. We mourn the “should have beens”. We are humbled by His grace. We can feel strapped by fear of the unknown.
It’s a roller coaster, every day. So many of you know this feeling in your own lives, with your own families. I pray that your peaks be many and your valleys few…but existent. I do not wish pain or sadness on anyone, but I have to believe that during the hardest times of our lives, we all come to a realization of sorts. For me, it is a reminder that I cannot do this alone. I have to keep the faith. I won’t survive if I don’t. Choosing to trust in God is how I sleep at night. How I leave that hospital. I pray that in your valleys, you cling to hope. That you fight, the way you have helped remind us to fight for her, for our family.
In the still of the wee morning hours that I type these words, it is feeding time in Audrey’s room. A nurse will skillfully and carefully take her temperature, change her tiny diaper and hopefully talk sweetly to her as she drifts in and out of sleep. They take the night shift for now. But like many things, this is temporary. One of these days, Audrey will whimper and it will be my job to care for her.
This both thrills me and terrifies me. She’ll be home and will finally feel like ours! But…she’ll be home. The angels we call nurses will no longer be at her bedside, the doctors won’t read her stats each and every day…she’ll be home. Again, this is where my trust will be tested but I must choose to do it…to lean in.
Remind me of this then, will you? When I start living in fear again…slipping…falling away from “center” with my eyes fixed on Him…remind me to trust, okay?
As a click send on this, I hope is finds your inbox as you sleep, rest and rejuvenate. It is Saturday, use it well and make the most of it!
Love and hugs,