Six weeks ago today, she took her first breath of life.
I think back on all that has happened over the past month and a half and I let out a small chuckle. You might think we would be used to all of this by now, but we’re not. I’m still amazed by how much she has endured…and overcome. No tiny human should have to fight so hard for life, but many do. Every single minute, every single day, there are babies around the world clinging…fighting for life.
I sit at a local Starbucks as I wait to go to a doctor’s appointment of my own. I catch myself watching the people around me, wondering about their lives. I wonder if they have known as much love in their lives as I have in my own.
I’m so in love. I sense the overflowing heart Chris has for Cooper, Audrey and I. I watch and feel how many family and friends love both of our children without condition. People we may not even know personally are making Audrey’s story a part of their lives, sharing stories of how she is making an impact.
The good Lord has given me a glimpse into the souls of many, proving to me how good people are. I have much to learn from the selflessness and generosity we have witnessed.
The only way I know to give back to you, each of you who read these words, is to write. To continue to tell the story. Her story.
Sometimes Audrey feels like my own little messenger from God. When I feel broken, I look at her and am filled with love…chin up, Rachel. When I feel full and blessed, I am reminded of the perspective I have been given…be thankful, Rachel. When guilt creeps along and digs in with sharp claws, I hear Him say…you are enough, Rachel. When I get lost in the wonderment of what is to come…be present, Rachel.
Today, almost to the minute, my mom and I said a little “HOORAY!” when she turned six weeks old. We’ve had some great progress over the past couple of days:
- Both chest tubes have been removed. Chest x-rays are being ordered each morning to watch the progress of her chylothorax. Today, her lungs look a bit “hazy”, but they are watching this closely.
- Her pacer wires were removed. No longer does she need pacing assistance to her heart.
- Her arterial line was taken out.
- They are weaning her off the heavy pain medication/sedative. She is being monitored closely to avoid withdrawals and a different medication is on board to help with this. Typically, they say withdrawals can occur when a child has been on the heavy meds for more than five days…she has been on them for 14 as of today. Thus, her weaning process will be slow and steady.
- Her TAPVR repair appears to be doing it’s job, a heart echo is done every few days or so to check the status of both the repair and her Tetralogy of Fallot. There is no plan for the TOF surgery, they hope she can be at least four months old, ideally six.
A few prayers and concerns:
- Her entire life, she’s had some sort of breathing support. Coming off the ventilator is taking a bit more time than perhaps it should. They are attempting a support system called NAVA, but she doesn’t appear to be quite ready for this. We need her lungs to be strong, to breathe well…on her own. This is asking a lot for this little girl. For now, she remains intubated and on full support. Her CO2 levels in the blood gas results have been quite high, these need to come way down so they can wean the vent.
- Physical Therapy is incredibly important for Audrey. She literally hasn’t had a chance to thrive…only to survive. She’s a six week old baby who can hardly move and weighs less than 6 pounds. Thus, moving her arms and legs for her becomes not just helpful, but imperative.
- She needs her central line removed and a PICC line placed. As we all know, getting lines placed in this baby’s body has been an issue every single time. Yesterday, they attempted placing a PICC for a couple of hours to no avail. They will try again tomorrow.
Overall, I pray that my baby daughter would start to become more awake and alert, that she would start to move around some, that she would be improve enough to be extubated and perhaps could try a bottle again. I pray she will get to come home and live with us for a little while before we are back here for her second heart surgery. And mostly, I cling to hope that, despite Dandy Walker and the past two weeks of sedation, Audrey will have the opportunity to really live. To see and hear. To talk and laugh. To sit up, crawl and perhaps even walk. I know that is asking for a lot…I get it. But wishin’ and hopin’ and prayin’ seem to do wonders for her. So I will.
Sure, there are many things yet to overcome, plenty to get me feeling like the waves keep crashing and I can’t catch my breath. But we high-five the victories, right?
Because of all the progress that IS being made, we did a little celebrating of our own last night at the Leslie Home.
Audrey Claire officially has a place to sleep! Her perfectly white crib is set up and ready for the weight of a baby…
Come on, baby girl. You may not know life outside the hospital, but it is wonderful. Come and live in it and know the joy that it can bring. I want to introduce you to your dog, Tucker. I want you to feel the warmth of the sun. I want to bathe you in gentle, warm water. I want to stroll you on a walk. I want to rock you to sleep. Maybe some day, we’ll walk hand in hand to watch Daddy and Cooper fish. Or we’ll ride bikes to get ice cream as a family of four. My hopes and dreams for you may sound simple, but precious girl, I know that they are not. As you drift in and out of a sedated sleep, dream sweetly, my love, of the possibilities of life.
Love and hugs,