The Dance.

“Mommy?” Cooper asks, each word dripping with wonderment, “Do you think Audrey will come live at our house?”

My mind rewinds to the day we learned of Audrey’s health concerns. The day our world shifted.

When Chris and I returned home from our appointment with Dr. Stanley that day in late January, I recall going into the room we had intended to be hers. A small collection of things we had gathered since finding out she was a girl were neatly placed along one wall. I laid on the bed and wept. Mourning so many things…fearing the unknown…dealing with the pressure of “a decision”. Chris came in, comforted me not with words but simply by being near me and letting me sob.

Fast forward to present day. Our baby is living and breathing here on Earth.

She is growing and finding her own way into the hearts of many.

So, it is time. Time to pull the trigger…to bite the bullet…we purchased a crib, we’ll fill dresser drawers…it is time to create a nursery for little baby Audrey. Something that for so long we were unsure we would need. Something that felt like a giant elephant in a undersized room. On Sunday, my parents helped us move our guest room furniture to clear space for this teensy girl. At one point, my mom and I shared a perfect moment in true amazement that we are getting to do it. That this baby, in God we trust, will make it home and by-golly, she’s going to have a place of her own! While we still aren’t sure when, we choose to believe it will.

So in answer to his question, I responded with a confident and hopeful, “She will, buddy. She just needs to get a little bigger and stronger still.”

And is she ever! Little sis is up to 4lbs. 12.5oz. Her feedings are 40mL every three hours, this is a little over an ounce. Her temperature has been stable and she is officially in a hospital crib. They still keep her clothed in two onesies and 2-3 blankets, but it works. She had her MRI on Saturday. They had to give her two doses of the sedative so she was quite lethargic that day and even into Sunday. The results came back. Luckily there were no new findings, and it confirmed Dandy Walker with no current sign of hydrocephalus. We praise that this is the case and pray that perhaps she won’t develop that dreadful excess of fluid which causes more severe side effects and could require a shunt to be placed in her brain. Only time will tell, but no need right now. Many things to be thankful for, absolutely!

Right now there are a couple of main hurdles Audrey needs to overcome before they will consider discharging her. For one, she is still on oxygen. Thankfully, her flow is very low. At the same time, she is learning how to bottle feed. For her, taking a bottle requires a lot and is an energy drain. She has to work hard and, coupled with her heart condition and how hard her body is working because of it, we’re told it is a fine line between what is just enough versus too little oxygen. Certainly when she has more she has energy and is more alert…bottles are more easily taken. As they wean the oxygen down, she appears to re-enter her very sedated and lethargic state in which she eats very little in her own.

It’s a dance.

As I have said before, she cannot go home until she is eating completely from the bottle and no longer requires a feeding tube. Currently, she still takes most of her milk through this tube snaking from her nostril to her stomach. But a few times in the past week she has taken a full bottle and we all do a little happy dance!

I pray she will do both well. Eat well. Breathe well. All on her very own. Coming home on oxygen and monitors is possible and happens often with NICU babies, I am just going to pray she won’t need to. Join me, will you?

I look at my daughter and simply can’t get enough of her. She’ll lie in that little crib and my heart almost explodes at the sight of her…her scent…her buttery soft skin. When Cooper talks to her or rubs her little head I feel completely overwhelmed and head over heels in love.

I have zero regret. I look at her and think about the fact that so many babies with her diagnosis wouldn’t have had the chance to live and breathe. It appears there is still little research on Dandy Walker because many do not choose life for their babies once the diagnosis is made. Not that this is the easier route by any means. I do not intend to lessen the situation she is in now or in her…well, our…future. But how can I look at her and not fully believe she isn’t absolutely meant to be here? That the best choice was made? She deserved this chance at life and has fought a good, good fight. And we’re here to fight with her and for her.

To me she represents so many things.

Particularly hope and grace.

She’s three weeks old today. Three weeks. Wow. In some ways it feels like it’s been months, in other ways it has flown. NICU life isn’t easy but I am blessed sweetly with perspective. The many families who have spent months of this are superheroes. When the day comes that Audrey may come home, I wonder what that transition may be like…notice I didn’t say worry.

I worry a little bit less these days and really work on going with the flow. The only plan I keep is life in three hour shifts to provide milk…that liquid gold…to our little bunny. But I do wonder. What will it be like for Cooper? How will Audrey adjust? I am incredibly thankful that I have had the time to really recover from surgery. Most mamas come home and are recovering WHILE caring for their newborn. For this, I am grateful.

My gratitude is endless. For so many things, to so many people. Notes, gifts, messages and meals have come from near and far. We are humbled. Full of gratitude. You are Audrey’s army of warriors. All that you do makes a difference in her life…in our lives.

Each and every comment you make on these posts are read and cherished. Someday, perhaps I will print this all out, including your words and give one to Audrey and one to Cooper. This is their life after all. So know that you are a part of the story…we all make up the thread that weaves the quilt of their lives.

Until next time…

20140617-072520-26720350.jpgKeep smiling, keep shining, dear warriors.

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12 thoughts on “The Dance.

  1. It was so good to see you for a moment on Sunday! I have to tell you about siblings of miracles. They are so amazing. Rachel! Cooper is so lucky to have Audrey for a sister! He will shock and amaze you over the next weeks, month and years with his wisdom and insight – that seem to come from nowhere! He was MADE for this role. I cannot even begin to describe the times my older 3 have made life with Finn easier. They are so innocent and can see things so clearly. They hear God without the filter years of life have put on you and me. There are times when they – especially Jake since he is so young – say things to me about Finn that there is no possible way they could know to say, except that God whispered to them. I am thankful for Emma, Lara and Jake that they came first. God knew I would need them to navigate the world of Finn. Cooper is that for you and Chris. Cherish it. And keep writing down what he says and how he reacts and interacts. It will be truly a blessing to go back and piece it all together as Cooper gets older. You will be in awe of his foresight – before you knew that’s what it was!

  2. Audrey is precious and the prayers are working wonders it seems. God has a plan, He always does, we don’t always know what that plan is, but He will be with us every step of the way. Much love, thoughts and prayers always coming your way!

  3. Wonderful MRI news….and wonderful progress for sweet baby Audrey. This post made me smile the entire time I was reading it. How lovely that Audrey’s nursery is being readied for her. Soon, I pray, she’ll be all snuggled-in. Enjoy the anticipation of that miraculous day, Rachel, Chris, and Cooper. ♥

  4. YEA!! Three weeks old today little Audrey!! What a fighter you are!! So thankful for the MRI news and for your nursery go ahead! Very exciting! Even though things are going slowly, its all progressing in a positive direction. Continuing prayers and thankfulness.

  5. Precious Audrey Bunny…you are doing great!! Cannot believe how much more bottle intake. What a fighter, love you all. Cannot wait to see you Thursday. Big hugs and strong prayers, Amy

  6. So happy for your family!!! What a miracle to be where you are now!! I am hoping you might let your warriors help with sweet Audrey’s room or clothing needs!! If you just let us know what you need and want, we would love to help it come about if you let us! I know you are balancing a lot and may not wNt to look too far ahead at a time. But we would love some direction as to what would help! I know you will answers prayers, and those are continual!!!

  7. Sweet Audry what strides you have made! So thankful for the results of the MRI. Praying for continued improvements. Love your sweet family

  8. A wise woman once told me that God always places the exact baby we need in our arms. Audrey was hand delivered by angels into your lives and into your hearts. He chose your family to love and care for a child of His, one that has already made a difference in this world and shown all of us how to use the strength given to each of us. Love and hugs to you all.

  9. I love & cherish getting to dance, this dance, along with the four of you!! I am honored to be so welcomed, so connected, & so intimately involved in this celebration of Audrey’s life, that’s happening day-by-day!! I am so humbled & awed by Gods’ gifts & His handiwork; this beautiful baby girl, a product of His miracles!! We are forever grateful……….
    Trusting Him,
    Nay-Nay

  10. Each and every day brings continuous miracles. We will take every one of them. Audrey, you are such a fighter and you do have an army of prayers and supporters behind you.
    The prayers are continuing for Audrey’s progress as well as for strength for Rachel, Chris and Cooper. A most precious family!

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