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.
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.