Remember that time I said I’m not “particularly suspicious”? Ha, well…perhaps I am, just a tad. That, or I failed at trusting.
Not even a full 48 hours after I reported the news of Audrey’s success in breathing on her own last week, she was back on oxygen. She had a stressful bottle-feed attempt and simply could not recover on her own. Since then, she has been getting support.
Last Friday, the morning started with a conversation about when a g-tube surgery would take place. The day ended with discouraging news from a heart echo. Her cardiologist believed that the pulmonary veins that were operated on in June may be “re-stenosing”, or becoming obstructed. This was concerning enough to require Audrey to have a procedure this past Monday, it was a Heart Catheter to run dye through her heart and lungs and see more clearly what is happening inside her little body.
After the procedure, the cardiologist felt that Audrey would probably need her total heart repair surgery within the next week or two.
What?!? I thought we had a few months?
After her heart surgeon had a chance to study the results from the Heart Catheter procedure, he disagreed. He felt that although one of her four pulmonary veins has become completely obstructed, her body is compensating well enough.
Enough to give her time. Time to continue recovering from her first surgery. Time to grow and gain strength to make it through the next. He feels strongly that the longer she can go without the surgery, the better her outcome and success of the total repair.
So…tomorrow morning, Audrey will go to surgery for her g-tube placement. Barring any complications with the surgery, recovery or overall condition clinically, we are moving down the path to taking Audrey home.
I’ve wanted this for over 10 weeks…well, really, ever since the day we found out she was sick. A place we can be a family of four under one roof. A place where a room awaits her. A place that we will continue to create memories. A place where an almost-four-year-old is ready to practice his role as a big brother.
I’m overjoyed at even the thought of it…and, gulp…terrified.
There are several hoops to jump through between now and then. Surgery, recovery, getting back to full feeds, control of her acid reflux, a one-hour car seat test and the education of having a baby at home on oxygen, a feeding tube and a heart rate/SPO2 monitor.
All of this can happen. I believe it will. Superstitions are sort of an excuse not to trust in what’s next. There was a reason Audrey wasn’t taking a bottle, a reason why she needed more oxygen. She has only 3 of the 4 pulmonary veins she needs. And now we know this. Not because I jinxed her, but because she was clear in her needs. We know that, at least for now, Audrey needs some breathing support. She needs help getting her nutrition. She simply needs these things while her heart is still broken. The hope is that after her total heart repair, she’ll have the opportunity to thrive instead of simply survive.
I have great trust in medicine. I’ve seen it work. I’ve also seen medicine be no match for the human body. That is why I believe in something bigger. I cannot rely on medicine alone, because at the end of the day medicine is really a series of highly educated guesses…at some point, my faith in humans only goes so far. It is when I give up the need for control and instead choose to trust in God that I can truly feel at peace.
And I do, I trust that the life Audrey is living has great purpose. That her strength in the darkest of hours may bring hope to others in their time of need.
It wasn’t that long ago when I thought going home with a feeding tube and on oxygen might be too hard to bear. My perspective has changed. I’ve pivoted and I am thankful that, with the help of some equipment and HomeHealth reps and nurses, the chance for Audrey to come home is imminent.
Seeking the gifts, right? Watch for them, they are there. They are real.
I know I don’t even have to ask for you to keep lil’ sis in your thoughts and prayers during surgery tomorrow. As we make progress toward going home, I will keep you informed. I really have no idea when that might be. It could be as early as next week or perhaps by the end of the month. Either way, we’re working on it. Our little Cooper will have a real chance to be a big brother. Oh my, I’m certainly interested to see how it goes. Things are about to get real busy!
Love & Hugs,