The Waiting Game

Here I sit quietly by Natalie's bed side, staring at her perfect little face. Another day has passed in the PICU, this time without any tears. I keep waiting for something bad to happen...and I'm an optimist.

My current view

Overnight, she kept dropping her oxygen level (this is a good thing!) while maintaining her sats. By morning, she was down to 55%, which is amazing considering she was up to 100% 10 hours before. Small changes in her ventilator were starting to make a difference. 

This is the monitor we're constantly checking. The 92% number is her sats, or how well she's oxygenating her blood.

This morning, Natalie was turned back to her back...a move I was really nervous about. Thankfully, she tolerated it like a champ. In the past, she has really not handled change well. I'm happy to report that she has maintained this lower level of oxygen all day. She still has a long way to go, but we're not seeing the gradual slide anymore. This is not to say that things can't change for the worse, but it's nice to finally see her keeping up with the changes the doctor and nurses are throwing at her.

The high frequency ventilator. The doctor continues to make slight changes in order to get the best possible outcome for her lungs.

Tonight, she's once again on her tummy and doing well. I was really hoping to see her oxygen number go down more today, but maybe that's just me being greedy. A lot of things have changed over the past 24 hours, and she needs time to adjust to all of the changes. Every once in a while, I'm reminded by the doctors or nurses that her lungs are incredibly sick. It's hard to understand that, because in a way I feel that if we just give her a couple of days, she can breathe again and her lungs will be back to normal, but that's not how it will happen. Slow and steady wins the race here. 

When you think about Natalie do you find yourself wanting to take a deep breath? That's how I feel every time I look at her. I want to take a really looooong, deeeep breath for her. I want to give her my lungs. 

Night time - surrounded by her machines and stuffed animals. We're always by her side, even if she doesn't know it.

So what does the future hold? The best case scenario is that she's on the ventilators (high frequency, then standard) for two or three more days. After that, she has to be able to start oxygenating on her own. I don't know how long she'll be here, but it doesn't really matter how long that is. She's in charge here.

Meanwhile, we had some very special visitors today. Grandma & Grandpa Miller stopped by to spend some time with Natalie. 

Grandma & Grandpa Miller were at Natalie's bed side today

What is it about this girl? She simply amazes me. Twice in her life now, she has defied the odds. Of course, she still has a long way to go to get over this illness, but it seemed like all was lost last night. Thankfully, we had family with us in the room and via FaceTime to help keep us strong when it seemed like the end was near. She's slowly coming back to us. I know it's God's will that she is still here.

The priest who was with us much of yesterday (Father Kadlec) asked me yesterday morning if I'm finding answers in my prayers as to whether or not she is ready to go; I answered that I simply didn't know. My thoughts were so jumbled that I couldn't discern what could possibly be the answer to my pleas.

By last night (when Natalie started making a comeback), I realized that the answer to my prayers was there all along. It doesn't matter if she's in my arms or in God's arms. She's known the love of her parents and one day she'll know the ultimate love of God. She is choosing us right now, though, because many children could not endure what she has endured and pulled through. If it gets to be too much, she'll let us know. But there's nothing this girl can't handle. 

I can't tell you how incredibly humbled I am that so many people have taken time to pray for Natalie, to follow this blog, and to offer all kinds of support to our family. I called the water department to pay our water bill today, and after I finished with my payment information, the woman on the phone said, "I just want you to know I'm praying for Natalie." I just about cried right then and there. Natalie's prayer warriors are out in full force! Keep those prayers coming...there's a long road ahead.

AND....A BIG DAY AHEAD!