Week In…Week Out?

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.

That’s right…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,

R

photo 2

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

photo 3

 

 

 

 

 

 

 

 

 

 

photo 1

 

 

 

 

 

 

 

 

photo 4

Advertisements

9 thoughts on “Week In…Week Out?

  1. Thank you so very much for the update! It’s the first email I look for every single time I open it up. Love seeing her progress and praying daily for her!

  2. So happy and proud of all of you and Audrey! She is such a fighter will always hold her in our prayers and wonderful thoughts. And yes won’t it be fun to see Cooper with his lil sis !!

    Sent from my iPad

    >

  3. THE LORD……….RICHLY BLESSES ALL WHO CALL ON HIM.
    ROMANS 10:12

    THANK YOU SO VERY MUCH FOR THE CONTINUED UPDATES AND THANK YOU FOR SHARING YOUR CONTINUED JOURNEY WITH YOUR PRECIOUS BABY GIRL! AUDREY IS AN AMAZING SHINING LIGHT TO ALL OF US AND IT’S A TRUE BLESSING TO WITNESS OUR LOVING GOD PERFORM HIS PERFECT WORK! MAY HE CONTINUE TO GIVE YOU AND YOUR FAMILY EVERYTHING THAT YOU NEED.
    THANK YOU FOR TRUSTING AND LOVING GOD THE WAY YOU DO!
    HE IS OUR EVERYTHING FOR ETERNITY!
    MY CONTINUED DAILY PRAYERS ARE WITH YOU.

  4. Rachel, I was so glad to see your post early this morning. I am amazed daily at our God’s Love and Faithfulness. He is with your family in such a beautiful way. Going Home! What wonderful words! I can’t even imagine the excitement you, Chris and Coop are having right now. I know that your Mom and Dad are ecstatic as well. I will continually lift Audrey in prayer. I will especially pray for today’s procedures. I know that God is with the surgeons guiding and directing their ever gentle move. I thought of Forrest this morning as I read your post. He would say that you are a great warrior in God’s Army. Your fight for your precious bunny is ever proof of that. I love all of you my dear. I hope to meet and hold this precious gift of yours one day down the road. Give everyone my love. Sherry!

  5. Look at those beautiful lashes! She just melts my heart. Your trust and hope in God is an inspiration to us all. Thank you for the update and we cannot wait to visit Audrey at her home. Praying for this upcoming surgery and g-tube surgery. Much love, Annie

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s