All About Norah!

I sure love Primary Children's. They do so much there to make every patient and family feel so well cared for. The Child Life specialist came by yesterday and had me fill out a form about Norah. Not long after, she came back with this poster on the left. Click to enlarge & read it. It was so touching!

Norah is still doing well, and still growing. We're waiting to hear back on progress that South Davis is making on getting the fancy-pants ventilator, but I know that they're working on it. It will be nice to have her closer to home again.

We met with South Davis on Friday to talk about what happened that put Norah back in the PICU at Primary Children's. Jeff and I feel much better after having been given a more comprehensive picture of the events that led to her transfer. They had a few takeaways on how to have responded a little differently, but it does seem like they did close to all they could at the time. She still has episodes of turning blue, and I hope that she simply grows out of them soon.

"Unresponsive"

Last week at South Davis was fantastic for the most part. I found myself frequently commenting to family about how well Norah was thriving there. She was playful, smiling, and her normal sweet self. Then she had a couple of rough nights on Saturday and Sunday. As a precaution, I spent the entire day with her on Monday. I spoke with her care team there, and we came up with a few different options to help make her more comfortable. I was ecstatic when she came around and played with me almost all day.

That night (technically Tuesday morning) at 2:00am, we received a phone call from the charge nurse stating that they were sending her back to the Pediatric ICU at Primary Children's. She had a major desat (her oxygen saturation went down & she turned blue) at midnight, then again at 12:30. Jeff and I were taking a few groggy moments to discuss the plan for going down there when the phone rang again. We were told, "When Norah left, she was unresponsive. You're going to want to leave now."

What is a parent supposed to think when they hear something like that? Visions of a future without our daughter ran through my mind, but I couldn't dwell on them. We immediately popped into "GO!" mode & Jeff helped me gather things so I could leave right away. That 45-minute drive was one of the longest in my life. She was admitted through the ER so she could get immediate medical attention. I beat her to the PICU, but she arrived there about 10 or so minutes after I did. When they wheeled her in, her eyes were open & she was looking around. I felt like I could finally breathe knowing that she was alert again. I was even more relieved when I was able to see that she didn't seem to have any lasting effects (ie brain damage) from the incident. She did have some lung collapse, but that seems to be her norm through these incidents. That girl is one tough cookie.

We still have a lot of questions about what happened, and what South Davis is going to do to regain our trust and address the gaps that caused the problem. I won't go into detail right now, but lets just say they made a lot of mistakes in responding to the incident. In fact, more went wrong than went right. We're so relieved that she's okay.

She had a fever that has since resolved itself. They think she maybe had (or has) a bug, so have been running tests to see if they can pinpoint it. Originally we thought she would only stay for a few days. But those plans have changed. She'll be there for a week or two while the PICU team monitors her and South Davis can get ready with the special ventilator that Norah definitely prefers. But who knows - there's a chance that Norah will stay at the PICU (this is her 5th stay, for those of you keeping track) until she can go home if it turns out that South Davis isn't the safest place for her. Time will tell. The doctors changed the settings on the ventilator to control the volume in her lungs as opposed to controlling the pressure of the air that goes into them. After weeks of trying to figure out what is causing the desat incidents, they're brilliantly thinking that this may help prevent them. So hopefully we'll finally be saying bye-bye to those blue baby blues.

How is she doing now? Well, she's great. She's happy, smiling, and her sleep is very restful. Her weight is still 3.8 kilos (8.36 lbs), but her length is up to a whopping 44 cm (17.6")! Once she's bigger, the plan is still to transition her to the home ventilator. Her pulmonologist is making sure she gets the coveted synagis shots to prevent RSV this winter. After RSV season, they'll look at possibly weaning her off the ventilator for when she's awake. They think she'll probably only need it while she's asleep to help her rest well and conserve calories that are eaten up by her work of breathing.

All in all, it was possibly the most frightening experience of my life - right up there when Jeff had his health scare almost five years ago. But the optimist in me feels good about our plan going forward. Of course, things often change... but I know we will make it through as a family.

Harper & Norah

Norah is doing great at South Davis. She's now up to 8 lbs, so only has a few more to go before she can be transitioned to a ventilator that can be taken home. She's been trialed on a similar ventilator before but didn't do so well. However, every little bit of growth makes all the difference in ventilating those tiny lungs of hers. It will take time to get meaningful growth (not just chub), but we're willing to be patient. As her chest and lungs grow, it will be easier for her to tolerate different ventilators.

She won't get to come home the moment she hits the magic mark of 11 lbs. Rather, it serves as the milestone to start the home ventilator transition. She'll have to be stable on it before she comes home... but like I said - we're willing to be patient when it comes to making sure she's comfortable and ready to come home. I just love knowing that a homecoming is in sight.

One of the great things about Norah being at South Davis is that she's only a 20-minute drive away from home. Today Harper decided that he wanted to "visit baby sister at the hospital", so off we went.

Harper is such a great big brother. His face lit up when we saw her, and she seemed happy to see him too. She was watching her brother's every move. He kept wanting to kiss and "hug" her. He wanted to hold her too, but we had to improvise for now.

Blue Baby Blues

Since my last post, Norah has had more little episodes of turning blue & needing to be manually bagged... this time while still on the ventilator. Three of these "events" happened yesterday. We were afraid that this would interfere with our big plans to transfer her  back to South Davis once the weekend was over. We're not totally sure what's causing these episodes, but it may be that she's bearing down too hard & her lungs just sort of clamp down too.

When I arrived at the hospital today (Monday), I was relieved to find that the plan was still to move forward with transferring out of the ICU and back to South Davis. Life Flight came to take her via ambulance again, and everything went even more smoothly than the other trips. In fact, she slept throughout the ride up there. She's getting along quite well with their ventilator at South Davis, and we're feeling very optimistic about everything.

Her weight is up to 3.58 kilos (about 7lbs 14oz), so we're just a few pounds away from our goal of 5 kilos before transitioning her to a ventilator that will work at home. We can't wait to bring our sweet girl home in a few months. She was all smiles today, and we had a great time playing. I'm sure the team at South Davis will be able to handle all that cuteness, but hopefully they will also be quick to respond to any possible "events" like those that she's been having. Even better would be to altogether say bye bye to the blue baby blues... but I doubt we're quite there yet.

Musical Beds

As the most stable patient in the PICU, Norah has been playing musical chairs beds throughout the unit during her current stay. When she changes beds, she changes equipment too. A few days ago they were moving her to a different room, so were unplugging her from everything. This means a respiratory therapist (RT) has to take her off the ventilator and manually bag her with oxygen (a squeezable bag is connected between her trach and an oxygen tank... you've probably seen something similar on TV). Well during this move, for whatever reason, the RT didn't bag her sufficiently & she turned very very blue. By the time we got to the new room (a short trip: just two rooms away from the old one) & connected her back up to everything, her oxygen saturation was below 50 & her pulse was about 70. Her eyes rolled back and Norah just stopped trying. The nurse urgently told the RT to bag faster, but instead another RT took over & they brought Norah back to us. Her color returned, and her eyes opened in shock as if to say "Whoa, what happened?" These events never get easy to handle. The nurse later apologized to me, but I told her it wasn't her fault & it was unfortunately nothing I hadn't seen before. This was true, but she knew that it had been upsetting. One would have to be heartless to not be affected by it.

On a lighter note, Norah was finally cleared to go back to the transitional hospital! She's grown to a whopping 3.53 kilos (7 lbs, 12.5 oz) & when trialed on the ventilator she was previously on (and didn't tolerate) at the transitional hospital, she did great! The little bit of growth has probably made all the difference. We'll let you all know how the transfer goes. They're thinking she may not need Life Flight this time, which would be much better on our pocketbooks, but we'll be sure that she gets everything that she needs to have a safe transfer. The plan is to send her back on Monday. We're excited to be taking this step forward (again). So this time our bed changing will be all the way back to South Davis! Woohoo

Smiley Girl

Someone forgot to tell this precious girl that she's in the ICU. She's been so smiley lately! And be sure to click and zoom in on her eyelashes in the last photo! She's just too cute - I can hardly stand it!