Audrey’s Status

Rachel asked me (her dad) to write for her blog today, perhaps to attempt to provide some insight into Audrey’s status. I promise, the beautiful literary masterpiece writer will write again soon.
Audrey is 24 hours post-op. Her cardiologist had indicated she had what is called Cor Triatriatum but in my dialogue with the pediatric cardiovascular surgeon this morning, that is not the case. The previously unknown condition that lead to her rapid decline yesterday is a problem with the anatomy of the veins that carry freshly oxygenated blood back to the heart (left atrium) from the lungs where it is then sent through the large chamber (left ventricle) and pumped to the whole body. Those veins, especially those exiting the right lung, have an abnormally small diameter that have wreaked havoc on her little lungs. That starting Sunday. Back pressure then developed that caused a fluid problem in her lungs called pulmonary edema. They became unable to adequately transfer oxygen to the bloodstream causing a rapid decline in her oxygen saturations. Conservative measures were unsuccessful and a repair via open heart surgery was required to rescue her from this rapid downward spiral. That was a very frightening chain of events. The prayer chain shifted into turbo mode.
The surgery has been successful thus far. Today (Wednesday), she has been fairly stable. She has NOT required the use of ECMO (extra corporal membrane oxygenation) which might have been needed to bypass her lungs if they did not recover quickly enough.  The sternum was left open and separated a few centimeters by a sterile rod to allow rapid access into the chest cavity if needed to stop bleeding, start ECMO, and to prevent cardiac tamponade; a condition in which blood and fluid fills the space around the heart in a normally closed space, constricting the heart and rendering it incapable of pumping effectively. The opening is covered with a clear sterile membrane (the Saran Wrap Rachel described) that is really hard to imagine. Who can imagine directly seeing your child’s heart beating through such a window!! It overwhelmed Rachel as she witnessed this for the first time last night.
This window to her little baby bunny sized heart will be closed in a few days if all goes as hoped. That will happen in her room. They will clean out the space around the heart and wire her sternum closed then close the skin.
She has tubes in both chest cavities, her windpipe, her abdomen, and her little bladder. She has lines in an artery to directly measure blood pressure, one in a “large” vein to monitor the total fluid volume in her vascular system, another in a vein to administer meds. She has wire pacemaker leads on her heart if her rhythm falters. She has oxygen saturation monitors in place, temperature monitors, tissue perfusion monitors and I’m guessing monitors that monitor the monitors!
It will take a long time for her to shed all of those tubes lines and monitors. Probably many weeks.
We continue to remain hopeful that this will happen, that she will continue to defy the odds and pull through this and go home with her mommy and daddy and big brother. We had hoped that was coming sooner. The homecoming will be that much sweeter.
She has a lot of stuff going on….
The complexity of the delicate balance of the management of her body systems is an amazing thing to witness. We hope none of you has to experience this first hand. Some of you already have. The musicians of this orchestra are playing a beautiful symphony, truly a masterpiece we believe being conducted by God of the universe and the Creator of little Audrey Claire Leslie. We believe He has many more symphonies to come through her, we would prefer they sound a bit more soothing and relaxing.
 He is speaking to all of us without words through this precious tiny little girl. She is touching us deeply. She has captured our hearts as you might imagine. We as family have witnessed a remarkable example of the power of the love of a father and a mother for a child faced with tremendous challenges. Frazzled, exhausted, frightened, puzzled, angry, sad, grateful, thankful, joyful describe  just a few of the phases of emotions over these past months. They have been tested beyond comprehension. They are fighting a hard fight for their little Audrey bunny. They deserve all that we do to come along side them in this “hour” of need.
Our thanks to all who are praying and pulling for team Audrey. She seems to have an amazing strength to have made it this far. Your prayers are apples of gold.
Keep fighting little princess.
You are dearly loved
PawPaw

 

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16 thoughts on “Audrey’s Status

  1. I think we all understand where Rachel gets her beautiful writing skills. Thank you so much for the update. Audrey has over come so many odds already in her short life who knows what that amazing baby is capable of.

  2. Thank you PawPaw for bringing us all up to date with your beautiful ode to little Audrey bunny’s latest triumph. Very much appreciated and beautifully done. Nothing beats the combination of modern medicine and God’s miracles working thru Audrey and working through her caregivers. My husband, John and I will continue praying. You are right – what your lovely daughter and Chris are going through is beyond comprehension. Vicki

  3. Thank you for the update Mark. Praise God for all He is doing for and through your precious bunny. Give everyone my love and blow a sweet kiss to Audrey for me. Take care of yourselves as much as you possibly can. Lean on all of us that love you for medicine…..

  4. I am in awe as I read your post…in awe that medical science can foster such amazing skills in its students so that the those young people can discover new worlds in the tiniest places. What a blessed few days this has been, fraught with fear, no doubt, but came through to the other side with a shining light. Prayers, everyday for all of your family as you keep vigil for Audrey, prayers for this precious girl baby, and prayers for the healing hands of her doctors.

  5. Praying in these early hours for Audrey, for all of you, for the health care team. Thank all of you for sharing Audrey’s journey with us. Praying peaceful rest for all of you. BTW, the monitors that monitor the monitors? Some of us call them “nurses.” So much easier to say. 😉 Much love!

  6. Sending prayers to comfort Audrey and all the family members along with Audrey’s health care team. Ms. Audrey is a fighter, she has the unconditional love of her family, and many people praying for her and the healing hands of her physicians.

  7. I knew some of what was going on with Dr. Ebert’s daughter and her precious family early on and promised him I was praying…he did seem a little distraught as he left my exam room. I felt badly for all of them and remember vaguely thinking, “why that family?, they’ve done nothing wrong!” This was soon after Rachel was learning of the details and occasionally I would hear an update. Then I had a dear friend, who recently(Monday evening, I believe) shared this blog(hard for me to call it that, as it is so much more and doesn’t do it justice)…I am forever changed and could never be the same as I read the words, digest the emotions, empathize and feel the agony of a parent and grandparents, loved ones and then the upsweep, rush of “She did it AGAIN!”, of answered prayers and the thrill of any victory, big or huge! I can’t write like these people(truly God-bestowed gift, and TALENT), but I came across 3 prayers yesterday that are all that some of us can muster at times, and perhaps the Holy Spirit is what compelled me to share, feel free to use on occasion…
    1)Help!
    2)God, Help me, now!
    3)Thank You!
    It is truly an honor for me to join with this particular army(no little band here) of family, friends, even strangers and pray our best prayers, big or small, for little Audrey Bunny! Rachel-I use to pray over my children in their cribs and end with “Lord, send angels to dance in their dreams as they drift off to Sleepy Town!” I know her very own are dancing for her as she rests and recovers! God Bless You All, over and over!

  8. The Crow family is covering you all in prayer. I hang onto every word you all write. Mark, excellent job with this one!

  9. We so appreciate that interesting and educational clarification Mark, especially accompanied with your love for your sweet family!! It truly has been a challenging but remarkable journey of faith!

  10. Continue prayers for you all!!! Isn’t it AMAZING how our Father surrounds us with comfort, love and that peace that surpasses human understanding during these most difficult times?!? God bless your precious family!!!

  11. I am deeply humbled by the life of Audrey and her angels on earth. Continuing to send healing love and light to all… Beautifully written, Mark.

  12. Praying for little Audrey from Texas. I graduated SHS a year after you (Rachel) and ran across this on FB. I believe in a God that can accomplish more than we can ask or imagine. I know he’s got little Audrey in the palm of his hands. My heart breaks for you as our second son, Carter Ryan passed away at birth a little over two years ago. I know the pain we endured and, despite knowing how we felt, I still can’t imagine the amount of helplessness you must feel at times. The only thing I can do is pray, pray, pray. Lots of love, Ashley

  13. PRAYING IN THE NAME

    PRAYING IN THE NAME OF JESUS TAKES THE PRESSURE OFF OF US. HIS NAME TAKES HIS PLACE; HIS NEAME REPRESENTS HIM. WHEN WE PRAY IN HIS NAME, IT IS THE SAME AS IF HE WERE PRAYING, AS IF HE WERE ASKING.

    FOR WHEREVER TWO OR THREE ARE GATHERED ( DRAWN TOGETHER AS MY FOLLOWERS ) IN ( INTO ) MY NAME, THERE I AM IN THE MIDST OF THEM.
    MATTHEW 18:20

    I AM FOREVER THANKFUL & HUMBLE TO HAVE THE OPPORTUNITY TO CRY OUT TO JESUS WITH YOU & MANY OTHERS. MAY HE CONTINUE TO BE RIGHT IN THE CENTER OF THIS VERY DIFFICULT SITUATION. MY THOUGHTS & PRAYERS ARE CONTINUED WITH YOU EACH & EVERY SECOND, MINUTE, & HOUR OF THE DAY.

    BECAUSE OF JESUS!

  14. Thank you Paw Paw for your expertise in helping us to understand Audrey better. You have the courage of a saint. We pray for you, each of you~ Cynthia

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