Magic Wand

When I am asked by various people if there is something they can do for me, I frequently respond with, "Only if you have a magic wand..." I've often felt that there is little anyone can truly do to help us.

Yesterday I realized that these offers aren't about fixing our problems. They're not about taking away pain or tears. Instead, these offers are about helping take small burdens away. They're about bringing smiles to our faces. And they're about showing how much love there is in this world to share.

I was recently contacted by a wonderful local family, The Billingsleys. They wanted to do something special for sweet, brave, inspirational Norah by spoiling her silly for Christmas. They wanted to make this holiday extra special for our family. Yesterday we had the privilege of meeting Sarah, Brian, and their sweet son Bentley, who is just one month younger than Norah. Sarah held Norah for a bit, we all chatted, and they loaded us up with tons of gifts.

But it isn't quite as simple as that. Sarah and Brian reached out to friends, family, and coworkers to raise an astounding $500 for Norah's gifts. They proactively committed themselves to doing something special for a family going through a tough time, and I am so honored that they chose us. They deserve so much more recognition that I could ever hope to drum up.

We send the most heartfelt gratitude to all of those involved with this incredible act of love, especially the Billingsleys. You may not have had a magic wand, but that sprinkling of magic dust is going a long way. Thank you thank you thank you! You have helped us give our daughter the Christmas she deserves.

Miracles

Recently, one of Norah's PICU nurses whom I consider a friend, clipped a quote from a magazine for me. I'd like to share it with you:

It is a miracle if you can find true friends, and it is a miracle if you have enough food to eat, and it is a miracle if you get to spend your days and evenings doing whatever it is you like to do, and the holiday season - like all the other seasons - is a good time not only to tell stories of miracles, but to think about the miracles in your own life, and to be grateful for them.

     -Lemony Snicket, The Lump of Coal

Today I was thinking about my miracles; just about every blog post of mine shares a sampling of them with my readers. It is well known that Norah is our miracle. She touches the lives of everyone she meets. She inspires while instilling happiness, hope, and love. But as I thought about this quote, I realized something else too. That while Norah survives and thrives during these hardships, that Harper is our miracle, too. Call it luck, science, fate, or divine, it is a miracle that Harper landed on the other half of that 50/50 chance of inheriting the same skeletal dysplasia that Norah did. And while I didn't go into detail with him, I told him this today. I squeezed him tight and explained that he is a true miracle, something totally amazing and priceless. It is a miracle that we have two strong, beautiful children.

Jeff is a miracle, too. I can't imagine what would have happened if he had been born as severely effected as Norah. Medical advances sure have come a long way. Those are miracles, too (shout out to science!) And all of the things that led to Jeff and I meeting, then leading to our falling in love... true love... is a miracle. I know this is all super sappy, and super cheeseballs, but I'm going to share another quote that made me feel a bit emotional, from one of my current favorite TV shows, Once Upon A Time. I like to think that this explains why Harper and Norah are so incredible:

...what you are: the product of true love. That's why you're powerful. 

      -Mr. Gold, Once Upon a Time

We all have everyday miracles that we should be thankful for, big and small. What are yours? 

Bounce!

Modified crawl: Once she sets her sights on something,
Norah will hardly stop at anything to get her hands on it!
Here, she's reaching for that blue and white tube,
which is much easier with the Trilogy's circuit.

It really is amazing how much Norah has bounced back from her pneumonia. Since returning to South Davis on Tuesday, she is a whole new girl. She's giving away smiles for free to anyone that wants one. She's kicking and dancing and having a wonderful time. I've even seen some progress with her mobility - she's trying to flip, roll, stretch, sit, and dare I say getting into a modified crawl position to reach for things. Everyone has commented on how incredibly happy she has been. And to top it all off, she's jumping right back into her time on the Trilogy ventilator. We're not quite where we were before she got sick, but we're well on our way.

Our day trip on Christmas looks like it's going to go off without a hitch!

We could hardly be happier. Norah is such a tough little girl. I look at the light in her eyes, and have complete faith that she will continue to thrive and progress. It's only a matter of time. Our life is a bit of a roller coaster, and it's great to have another climb behind us.

The older Norah gets, the more she and
Harper look alike.

Even her eyes are smiling.

Triple Goobers

With Norah's initial labs, we knew that she had pneumonia. What we hadn't expected was for the culture to grow out THREE different bacterias all in high population. Her Nurse Practitioner said that two was common with trach patients, but not necessarily three.

Her initial antibiotic was covering two of those goobers, which left the one more or less untreated. This explains why she wasn't getting much better yet. They switched her yesterday, and we'll hopefully see her bounce back pretty quickly. What a relief.

So we may be headed back to SDCH today --fingers crossed--. Thank you all for your show of support.. It's been a crazy week!

Waiting

Norah won't likely be leaving the PICU too soon. She isn't any worse, but she isn't much better either. She's back to her baseline ventilator settings (I always correct people who say "home" settings), but is still not tolerating her feeds, and is still on a feeding pump (she hasn't needed one in a VERY long time), taking her feeding over an hour and a half instead of the usual 10-20 minutes via gravity without a pump. She is still working quite hard to breathe, which leaves less room in her body for formula.

She's still sweaty, off and on feverish, and mostly not herself. She plays now and then, but mostly drifts off to doze intermittently throughout the day. I'm not sure how long it will take her to get over the hump, which means her estimated stay at the PICU is unknown. Yes, that means that we may or may not have our Christmas at home. I won't think about that until it gets closer. We have three weeks to get back to where we were, but I'm not sure that's feasible.

I was pretty emotional last night. I think everything just sort of caught up with me. I've been pretty cavalier about this PICU stay, just assuming it was a bump in the road and she would immediately bounce right back. It's taking longer than I thought it would, so I think my denial of the situation finally broke through. I shouldn't have been looking up medical journals online, but I read that mortality rate for ventilator associated pneumonias are widely varied, but generally in the range of 24-50%. UGH. Now I know for so many reasons, Norah does not and will not fit into that percentage. It just isn't her situation. She is doing too well... right?

Last night I wistfully sobbed about missing the time that Norah was in my belly. I carried her with me everywhere I went. She got the hiccups every day, which would send a quick little jolt in my belly. She was a gentle kicker (unlike Harper), which is just how she is now: so surprisingly gentle for her age. She was always snuggled up within me, no matter where I was. I never had to say goodbye to her at the end of the day. Jeff reminded me that I couldn't be selfish in this, and that if she was still in my belly, he couldn't snuggle her too. We wouldn't be able to enjoy her smiles, her belly laughs, or any of the wonderful things that Norah shares with us. Of course I wouldn't really want her back in there, but I sure miss never having to be separated from her.

I probably shouldn't be allowed to use the Internet anymore. In addition to reading awful things about ventilator associated pneumonia, I also briefly looked at a couple videos of kids Norah's age. I wanted to see what a kid with typical development would be like. Of course Harper fit in that category, but I just couldn't remember the look and feel of it. Oh boy, what a mistake. These kids were such busy bodies. They walked everywhere. The tumbled, toddled, and talked. Their voices were so sweet. They played on the couch, the carpet, and everything they could get their hands into. I quickly closed the videos. My emotions are torn here. Though I pine for Norah to be free of her tethers, I don't want those babies. I want mine, and that means at any cost.

So we wait for Norah to get better. We'll wait for her to get back to where she was before all this. We'll wait for her to come home. We'll wait for her to get strong enough to not need all of her medical gear. We wait, we wait, we wait.

Giganto Blanket

I've been lamenting to friends and family that my blog has become a bit depressing. People always tell me that it makes them cry - especially those that personally know our family, and love Norah so much. So I've decided to show you something a little on the lighter side, that makes me smile.

This genius knitter makes "giganto blankets", using PVC pipes as needles and wool roving instead of standard yarn. I want to do it too, but the wool roving would be crazy expensive. Either way, there is something I love about this video. Enjoy.