As long as you are with me…

Dear Audrey,

There has been great progress over the past week. You’ve had some setbacks along the way, but like everything else, you have fought. While your gastrostomy surgery to place the Mic-Key button went smoothly, it took you a little longer to recover than expected. Slow and steady…at your own pace. You are feeding well through the tube. You aren’t gaining weight yet, but you will. You must.

This morning, you threw me for a loop. During a diaper change, I noticed your Mic-Key button was loose. I didn’t think too much of it, but made mental note to ask the nurse about it when she returned. So I snuggled you up in your onesie and soft blanket, scooped you up to hold you. Almost instantly, I noticed your onesie was drenched. I sat you back on the bed, unbuttoned the snaps only to find your Mic-Key button had fallen out completely.The Button Fails

I felt nervous but calm. I went to get your nurse to help me. The water-filled balloon that is in your belly to keep the button in place had ruptured. The reason is unknown. I learned that from time to time this might happen. It scared me a bit at first, but quickly I realized what a blessing it was that it happened for the first time at the hospital. Next time, I won’t be so caught off guard by it.

Tomorrow, you are scheduled to move to a new room. Your room will be in the NICU Village, this is a place where babies go who are almost ready to go home. Mommy and Daddy will provide all of your care just like we will at home. We will eat, sleep and be there for a few days until the team of doctors and nurses feel that as a family, we are ready to go home.

Can you imagine it, baby? A car ride, your own bed, your own brother, your own…everything.

Audrey, you’ll get to feel the outside air, the warmth of sunshine, the scent of food, the sound of Tucker’s bark and so much more. Please, keep progressing so this can happen and soon. Let us take you home for a bit before they must, once again, hold your heart in their hands. They say babies thrive once they are home…do that, okay? Prove the doctors right, prove that you are strong and stable enough to do this.

This transition might be hard at first, but we’ll all grow into it…our new normal, as Daddy calls it.

Let’s create a life together outside the walls of this hospital. Sure, there will be challenges and some inconveniences.  But there will also be great victories and precious moments not taken for granted. Life is short and uncertain. Our days are not guaranteed, they are a gift. I want to treat them as the gift they are. You, Cooper and Daddy are the beautiful ribbon adorning each day…

I recently heard a song and within the first few lines, it captured me. It made me think of you. I listened to it as if it was from your perspective…as if you were the author:

“We’re a thousand miles from comfort, we have traveled land and sea
But as long as you are with me, there’s no place I’d rather be
I would wait forever, exalted in the scene
As long as I am with you, my heart continues to beat…”

You are so loved, baby girl. You are loved wholly and well. And I know you feel it. You feel the love around you. Just as your loved ones haven’t given up on you, you too have never given up on us. I believe you want to be with all of us, here on this beautiful Earth, surrounded by golden-hearted people.

Well, we’re here for you. We have been and will continue to be. As a team of warriors, we’ve been through much and will encounter more throughout your life.

I love you.



A Little Smirk



11 thoughts on “As long as you are with me…

  1. Praise the Lord for each blessing along the way. Rachel, your words are amazingly insightful, heartfelt and full of grace. Thank you for sharing your journey with us. Sending you all much love and hugs as you are never far from my thoughts. xo, Katie

  2. Ooh, and I love your new banner at the top. Audrey is as sweet as they come. Can’t wait for her to be home with her family. xo

  3. Dear Rachel, Chris, Cooper and Audrey~ I love how you say “but we’ll grow into it.” It brings me way back to the beginning and all you have been through…. You have grown into every single unknown with brave and loving hearts, and yes, you will grow into the next step and the one after that too. It feels like it’s time to get a little excited~ Home!! Oh my goodness~ YES! My family speaks of you often, Scottie has held little Audrey’s tiny hand in his~ My baby girl, Katie, who wrote above, talk often about each of you~ with love, Cynthia

  4. Keep fighting the good fight baby Audrey. You have proven to be an amazing warrior in you battle against a “Problem List” that is really unbelievable. Here you are, pushing on, working so hard day after day just to gain a few grams, working so hard just to breath. You’ve captured our hearts and we are pulling hard for you as you approach a day that we have hoped and prayed would come. Home. Stay the course sweet baby girl. It’s almost party time!

  5. I have not even met you, but I have been following Audrey’s story. She has touched my heart, and I think of you all often! What a reminder this has been to be thankful for the small things that are taken for granted every day. Rachel, you are an amazing lady who has handled what God has given you with such grace. I can sure see why he chose you to be Audrey’s mommy! I’ll keep praying, and Audrey – keep fighting!

  6. How exciting that you get to go home soon Audrey! Rachel, you are doing such an amazing job and I know you all will do an amazing job caring for her at home. I hope the stay in the NICU village goes well. What a cool concept. I love your new banner at the top as well! Those sweet bunny ears. xoxo, Annie

  7. Stay strong and keep fighting baby Audrey! We pray for you and your family daily! You are so dear and so loved and have the best mommy and daddy in the world!

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