I sit in a beigey-yellow chair in the dimly lit hospital room. The footrest is elevated and I draw my legs closer. My arms are warmly full of baby Audrey and I can’t seem to get close enough to her. I take her in. Smell her. Kiss the tip of her cold bunny nose…
That was two weeks ago today. 14 days since I was last able to snuggle with my baby.
Today, Chris and I quietly sit back and watch the orchestration of the team caring for Audrey. We watch her chest move up and down and admire the sight of her heart beating strongly just under the railroad track holding her incision closed. Her nurse plays country classics on Pandora for Audrey’s listening pleasure and George Strait’s, “Love Without End, Amen”, plays through the speakers.
Isn’t that the truth? I look at Chris looking at Audrey and think of Cooper all in the same moment and think, yes. Absolutely. My love for them is most certainly without end. Amen. I take a moment to pause and smile. To be thankful. To be a hunter of beauty.
As Audrey has lost more and more fluid, her hands are back to their boney, wrinkly form I remember from her first few weeks of life. I’ve said since the first time I saw those fingers that they remind me of her great-grandfather Derry’s. Something about them gets me every time and I smile. They may not look like a the chubby, banded hands of many six-week-olds, but they are a reminder of the lineage she comes from. She is made up of incredible people from both of Chris and my families.
But her heart is unique. It’s all her own. She fights to keep it going and despite all that has been, is and will be against it, it beats with regularity and strength with no extra help from medication right now.
While we regret the news of yet another diagnosis of her chylothorax, the time she has spent a since then on a very specialized formula has really started to help clear the consistency and decrease the amount of fluid in her chest tube. Really positive. The hope is that this formula will decrease the output of the thoracic duct and allow it a chance to heal because less is interfering with it. Corrective surgery for this is the very last resort and the heart surgeon will go to great lengths to avoid it if possible.
The most important thing is Audrey’s health, absolutely. But I won’t pretend that it doesn’t sting just a little that the milk I’ve been working to provide just isn’t working for her. She was off of the milk for many days after her surgery and then, not long after starting on it did they discover this injury to her duct. As her mama, it feels like one more thing that I cannot do for her, like it was the last thing that made me feel needed…useful…having a purpose. I ached, felt sorry for myself for a bit but then, a lightbulb. As I was hunting for the beauty…anything at all…I realized how wonderful that my milk was being administered, even for just a few days. Because of the high fat content of it, the injury to her duct presented itself. Because she still has that right chest tube, they were able to diagnose it and start treating it early. Thankful for this.
In the midst of all this, physical therapy has come to consult on Audrey. She’s literally been lying on her back in basically the same position for almost two weeks. She’s sedated now and was paralyzed for many days. All of this can be problematic with her muscle tone, ligaments and tendons. She holds her hands, arms and legs in the same position for hours. So between PT and her family, it will be important to do a few specific exercises with her several times each day. Also, the tiniest splints you have ever seen were molded and made just for her. She wears them two hours on, two hours off all day. It is something that seemed a little overwhelming at first but now it feels like something I can really do to help her.
OU Children’s was very quiet over this holiday weekend. I can say that “quiet” word now that the weekend is over. Most people in the health profession cringe at even the mutter of the word. Tomorrow, things will be busier, the hustle and bustle will return again.
A new week begins. What, I dare ask, will it bring? Progress? Yes. More set backs? Perhaps. Whatever it brings, we’ll make it through.
I close with beautiful and thoughtful words from my mama, Audrey’s NayNay:
Hopeful, as always, believing fully in miracles, expecting them to keep coming from our Heavenly Father, God, who is in charge of this little angel.
I must Trust HIM…..it is how I carry on.
It is how I face this, and it is how I stand firmly on the hope that HE promises.
Pray with us, believe with us, trust with us, remain hopeful with us….Audrey’s loving family, her bedside cheerleaders and earthly support team!
We are eternally grateful for the immeasurable concern, caring spirit, encouragement, support and love each of you reading this has provided in this time of need. YOU are “angels among us”.
May blessings fall on each of you & your precious families.
Renee & Rachel