Settled In

After an uneventful transport via ambulance, we made it from Primary Children's to South Davis. We're all settled in, and Norah is doing great. She's getting used to all the new people, but she doesn't seem to notice too much of a difference thus far. That girl is just so easy going. Harper calls South Davis "the little hospital', and I think in some ways he is more comfortable there. He doesn't have to face a constant flow of people in and out of Norah's room, though I must say that our shy little boy was getting pretty comfy with some of the nurses and therapists (I'm talking about you, Ce-ci-wee).

The staff is getting to know Norah and her needs, but they all mostly seem willing. There are a few concerns, but most of them are hopefully fixable. For example: when I ask a question, I really detest when the response is "I don't know", and the person expects it to be enough. But don't you worry - my follow-up response is usually that I'll be asking their boss. Well, now for the pictures...

This one was a really difficult goodbye. Cecily first took care of Norah when Norah was just three weeks old. They know each other so well, and when they lock eyes, you see love pass between them. Fortunately, Cecily lives only a couple miles from South Davis, and has declared herself to be "Norah's Bulldog". She was our first visitor there too, coming by Tuesday evening to help decorate Norah's room. As a keepsake, I gave her the hospital tag that had been tied to Norah's ankle.

Norah did well on the transport ventilator (the LTV). It was her very first ride upright in a car seat, though she was a bit smooshed. She was entranced by the passing surroundings, and even wiggled her feet before falling asleep towards the end of the 25-minute drive.

An afternoon nap after a long day.

Day 2: Still happy and healthy. I just adore the stars in her eyes when she looks at her daddy. Notice the arm and legs are a blur!

PCMC Telethon

A local TV station recently filmed Norah for the PCMC Telethon that airs June 2nd. Below is a link to the website with all of the information.  Please consider making a donation to one of the most incredible places on Earth.

Giving Hope PCMC Telethon





And below is Norah's video linked from YouTube. Norah's part is just at the beginning, including her sweet dancing feet. The entire video is worth a watch though. Good luck avoiding tears!

TTFN

Tomorrow is the big day: Norah will be transferring to South Davis in the late morning. We've begun to say our goodbyes, and it has been very emotional. We've become closer to the PICU staff than I ever would have imagined. They've been there to comfort us, to laugh with us, to care for Norah, and to save her life on multiple occasions. So for those of you from PCMC that are blog readers, this one is for you.

Our first admit to PCMC was in August. We went from a clinic appointment to the ED, to the PICU. We were one of those lost families that I've come to recognize by the bewildered looks on their faces. Little did we know that we'd come to feel so at home there. Norah has spent close to nine months out of ten there in the PICU. There are countless nurses, doctors, therapists, techs, clerks, dietitians, consultants, housekeepers, engineers, volunteers, and other miscellaneous staff that have made a world of difference in our lives. I love you guys!

Below is a little sampling of the goodbyes that we've been saying. There are still a few more big ones that will come tomorrow. I know that this transfer is a sound medical decision, but it's difficult to reconcile that decision with what's in everyone's hearts. I only have the best things to say about Primary Children's, and I will always think of that place as our second home. Norah has brought so much warmth and love to the PICU, and now it will be their turn to bring some sunshine to us via visits to South Davis. In the famous words of Tigger, one of Norah's favorites, "TTFN, Ta-Ta For Now!"

Norah and I with Pooh Bear aka Wes, Shawn (one of our Techs) and his wife Kim. 

Our nurse Cara, Norah, and I have bonded over guilty pleasures like Jane Austen, cheesecake recipes, British romance movies, and other things that shall not be named to such a wide audience. ;)

Norah wouldn't smile for the camera at first, but once Liz gave her a big smooch, she was one happy girl! Liz is another one of our favorite nurses. We have so much in common, it's unreal. Go Team Tofu!

I LOVE LOVE LOVE Andrea!! I am going to miss her so much. We had quite the tearful goodbye today that I'm not fully ready to talk about. Love you, Andrea! <3

DDH

Well, I suppose it was time to add just a little dash of drama to our lives. We recently had an orthopedic consult as part of the preparations for Norah's transfer to South Davis. They wanted x-rays of her hips and spine. The good news is that there is no scoliosis (yet). The not-so-good news was that the films suggested her hips were not in their sockets. They ordered an ultrasound to get a better look, and sure enough found that she has developmental dysplasia of the hip (DDH).

One of two things will happen: either they'll be able to pop them in place while under anesthesia, or they'll have to go in surgically to clear some space and pop them in. This could include lengthening muscles or tendons, and/or clearing out debris from the socket before popping them in. She'll have to be casted afterward. 

They may coordinate all this with her soft palette cleft repair at 15-months. We're not sure just yet. It would be nice to have everything done under the same anesthesia, but it will have to be decided if that would be too much for her at once. We should know in a few months.

The good news here is that we caught the problem. Surgery will give Norah a fighting chance to avoid hip replacement surgery in childhood then in early adulthood like her daddy had. There's no guarantee that her hips will form perfectly, but it will hopefully help. 

Below are some fun pictures of our recent busy week or so. We're enjoying our last few days during this admit at PCMC. It's been difficult to think about how much we're going to miss everyone, so I'll save that for another post.

We're glad that since they've made her hearing aids so yummy, that they're also fairly waterproof.

Snoozing in mommy's lap.

PEEKABOO! Harper as a reputation for being shy at the hospital. He closed the door, curtain, and hid from everyone that was still in Norah's room.

Make-shift "fort" on daddy's lap.

She used to loathe oral suctioning. Now she thinks it's fun. Norah's speech therapist has really helped her with her oral aversion.

Taking a Step

As mentioned in my last post, there were discussions around sending Norah back to South Davis Community Hospital. We had a care conference on Tuesday, where we discussed her current progress, ideas for treatments, goals both long-term and mid-term, as well as potentially sending her back to South Davis.

The great news is that Norah is thriving. She is stronger than she was the last time she was at South Davis. She isn't quite so fragile, and is a happy, active, ray of sunshine. They've been running trials of lighter support on the vent, and she's been doing fantastic. Though her pulmonologist had originally guessed that she would only need the vent for a year, he thinks it could possibly take her until age two (give or take) until she could be free of the trach and vent. However, that doesn't mean it will take that long to get her home. We will continue to encourage growth and strength building, which is what needs to happen before she could come home. I honestly don't know when that will be.

It was with much discussion that we have decided Norah will transfer back to South Davis in two weeks, on May 29th. This is going to be emotionally challenging for us. Well, "emotionally challenging" may be an understatement. The PCMC staff have become our family. Of the nine months of Norah's life, she's probably spent eight there in the PICU. There will be lots of tears, but it does feel like the right thing to do. There will be many milestones to hit before Norah can come home, and going to South Davis seems to be one of them. We're feeling nervous and cautious, so please wish us all luck.

Could this face be any sweeter? She is my strong, beautiful girl.

Enough hair for a little pigtail... can you see it on the side?

Jeff was trying to have some cuddle time, but I distracted Norah with her first knitting lesson.

Mother's Day and Outdoor Excursions

Mother's Day began with some tears. Everything is fine, but I had a good half-hour phone discussion with one of the PICU attending physicians. Our main topic was a possible transfer out of the PICU to South Davis Community Hospital. This caught me a little off-guard, as there has been little to no serious consideration to send her back there. The conversation simply stirred up some strong unpleasant memories of what happened the last time Norah was there. More to come on South Davis soon. Leaving the PICU is just big a topic for the moment.

The four of us had a great Mother's Day though. I spent it the only way I would ever want to - with my two wonderful kids and my amazing husband. Sure, it was at the hospital... but I didn't really care. All that mattered was that we were together. On Sunday, I did a whole lot of thinking about all of the mamas out there that have lost their children. It happens all too frequently around us in the PICU. It is a sad place, but we like to think know that Norah brings a whole lot of light to that unit. We sure are fortunate to have both Harper and Norah... and we sure are grateful that this Mother's Day was spent as a family of four, and not a family of three. My heart breaks for parents who have lost a child.

Enough of the gloom... So we have been spending time outside with Norah. It's kind of a big deal. The nurse takes her wagon full of gear - portable suction, trach bag, extra trach tubes, portable monitor for her pulse-ox, etc. The respiratory therapist wheels the extremely heavy and difficult to maneuver ventilator. I get to carry our sweet girl. We were taking her in the wagon, but not only is there little room for her, but it is too noisy and bumpy a ride for her liking. Whatever the princess wants, the princess gets.

From earlier in the week: They have the sweetest relationship right now. I love watching them play.

Enjoying the Angel Garden outside the north entrance at PCMC. It wasn't cold, but Norah didn't like the intermittent wind gusts in her face. She eventually snoozed in my arms.

Peekaboo!

We joke that some people may think this is what one of our favorite nurses, Cecily does all day. In truth, she is one of the smartest, hardest working, loving people I have ever met. She's an amazing nurse!

Nom nom nom: squash!

Harper zonked out pretty quickly after the long day at the hospital. He was such a good boy all day. The green dog is Scout (from his Auntie Kristen!), and Norah has a purple one, Violet. They're super cute and even say their names.