Norah's Voice

When Norah was first born, I remember the sad whimpering sounds that she made right before they whisked her away to the NICU. However, I don't remember the sound of her cry during those first six weeks before she was trach'd. She very rarely cried. I'm not fully sure if that was because of her calm temperament, or because she was too focused on fighting so hard to live.

During this recent stay in the PICU, an orthopedic resident came by to adjust Norah's hip harness (that she wears nightly). While he was adjusting it, he looked up at her, and asked, "Is she trying to cry?" I answered, "No, she is crying". It took him a hardly perceptible moment to register that she didn't make sound because of her trach. "Oh," he joked, "that must be nice to not have to hear her cry." I kept calm, and told him, "Actually, I've told parents that if they have ever wished for a mute button on their child, they should come meet Norah. It really very sad actually." He didn't bring it up again until right before he left the room when he looked over at her, and conceded that, "Oh, that is pretty sad to not be able to hear her."

DUH. He's the sort of guy that gives residents a bad name.

Her lack of voice sucks pretty bad actually. Some children/adults learn to move their vocal chords around the trach tube (especially if/when there is a leak/extra space around it), and some do not. Norah does not make sound. The times that she has made sound while coughing or crying, we know that there is something very very wrong. But I ache to hear her sweet voice. And I know that when I first hear her truly use it, I will be in tears.

The other day, Harper had Norah in a fit of laughter like I had never seen before. She's had her fair share of belly laughs, but this was intense. We didn't catch the height of it, but below is a video clip. Unfortunately, it probably won't be visible on mobile devices, but computer users, enjoy! It shows that even though Norah isn't vocal, we hear her loud and clear with our hearts.

Nervous

Sleeping beauty and her prized 60ml syringe package
(Look at all of that hair!)

Fortunately, Norah's positive result for MRSA was merely a colonization. MRSA is everywhere in hospitals, especially long-term care facilities. It is a low-ish population, and she hasn't shown any signs of infection. We're relieved, but we also were never super worried to begin with.

Norah has been feeling better in the last week or so, but has been fighting naps lately. She gets pretty crabby when she's tired, and it's so difficult to not give in to her tantrums. I love when I get to experience typical parenting woes instead of only being buried in the intense worries that come with a medically fragile child.

On the topic of worries... Norah's soft palate (the back of the roof of her mouth) cleft repair is scheduled for Monday September 24th. We're nervous, but mostly because it's a full surgery with full anesthesia. Her ENT Dr. Jeremey Meier (who also performed her trach surgery as well as countless bronchoscopies) is one of the few local pediatric ENTs that do the cleft repairs, as opposed to referring out to plastics. We adore him, and like so many of Norah's specialists, Norah is one of his favorite patients. He will do what's called a z-plasty (which will also stitch together her split uvula), which is considered the best treatment for a cleft in the soft palate. He said if all goes well, she hopefully won't need a follow-up surgery. I'm glad it's just her soft palate, which is all soft tissue, as opposed to a hard palate, which is bone. Oh - and a word to the wise: I would not recommend a Google image search for z-plasty, unless you have a high tolerance for graphic medical images. Even when adding the search term "cleft", it will pull up some non-oral images that are quite graphic... even some of the oral images are graphic for that matter.

I talked to a nurse friend (Cecily of course) who has made several trips to Guatemala with Hirsche Smile, a team that does charity palate repairs. She said that those kiddos typically only get Tylenol to ease their post-op pain. Yikes. So we consider ourselves fortunate to have access to such great medical care. Norah will certainly get more than Tylenol, and as usual, Cecily helped calm my anxieties. When our family is in a better financial position (likely to be far, far, far in the future), I sure would love to donate to a cause like Hirsche Smile, to help them give care to kids that were born to unfortunate circumstances, with few places to turn for help. When I see these families, I feel guilty for feeling like our own financial situation is bad. I suppose it is hard for us, and that's what matters, so long as we maintain a humble world perspective.

As far as recovery time goes, we're not yet sure. It could be an overnight stay in the PICU, or it could be a week. Dr. Meier said he'd ideally like to see Norah back to her baseline and feeling great before she goes back to South Davis.

On a lighter note, who would like to see Norah play with her suction tubing?

Be The Match

We lived at Primary Children's for so long. Once, when Harper and I were leaving the hospital after a visit, an employee made small talk with me in the elevator. I mentioned that Harper's sister "lived in the hospital". She said something like, "Oh, I'm sure it feels like that sometimes". I briefly explained before she got off at her floor, that Norah did indeed live in the hospital.

I would often see other kids and families that had an aura about them that said "We're regulars here". Some of these kiddos were obvious oncology patients. Cancer happens to good people, as evidenced by the way sweet, tenacious kids have to battle with it every day. But here's the thing - sometimes, with certain types of cancers, there is something that we can do to help. Short of waving a magic wand, there isn't much we can do for Norah like there is with some of these oncology kids (and adults, for that matter).

A few weeks ago, I joined the Be The Match registry. I have yet to find out if I'm a match for anyone, but I sure hope that I will be, especially considering my mixed ethnic background. I may be the only person in existence that could save that certain someone's life - with something simple as a stem cell donation (similar to giving blood or plasma), or marrow donation (which replenishes itself in 4-6 weeks).

So for those of you that are eligible, I ask that you strongly consider joining the Be The Match Registry.  You might have the power to save someone's life.

Doing Better

Norah has been doing fantastic. She hasn't had any other desats or crazy episodes like the one the other day. Thank you all so much for your care and concern via phone calls, text messaging, and blog comments - it means more than you know.

After that episode the other day, we're really wary of pushing her too hard. Of course we're anxious to get her home, but going too fast, too soon, would be detrimental to her progress. We may have to go slower than we had anticipated, but that's okay. We just want our girl to be safe and healthy. Although, after talking to a few experts (I'm looking at you, Janie), along with my mama's intuition and experience with the Drager vent (I know way more than I should, but sometimes wish I knew more), we think that the episode may have been caused by the cursed sensor on the ventilator. Her squished position in the Bumbo chair probably didn't help much either.

The good news is that the desat probably wasn't from Norah alone, rather an equipment problem. Regardless, no one likes to hear that their baby was slumped over and blue. I'm just grateful that it seems like they responded quickly. The Director of Respiratory really went out of his way to research the logs, including looking back at a camera down the hall that shows the events and times that the staff went into the room in response to those alarms. Talk about awesome, huh?

Norah is happy, playful, and full of smiles. Her current favorite activity is playing cars on the floor with Harper. We don't dare take those Princess Peach cars away from her without proper distraction, as it results in a temper tantrum almost every time. She especially loves one of them in particular. Isn't it funny how some people are drawn to "girly" things, and others are drawn to "boy" things? We love that Norah is drawn to both in one: a car... but a pink princess car. Harper is great at sharing with his baby sister... for now.

Norah continues to have good days and bad days with the home ventilator. Her record is 2 1/2 hours, but that was without the little humidifier that causes some extra resistance in the circuit. Think of sucking through a cigarette filter. Yes, I know many of my readers have never, and will never smoke (which is a good thing!), but that seems to be the best comparison. We found a new humidifier for her, a smaller one that puts up less resistance. It seems to be much easier for her, but she still gets worn out from the hard work. Some days she'll only last 5-20 minutes, but yesterday she lasted a good 2 hours and 10 minutes.

Family time on the floor. Harper is so sweet to share his Mario Kart cars.

Norah playing with daddy's iPad! She loves splashing in the tub, so I'm not surprised that she likes the virtual splashing too. You can see her sort of huffing and puffing away, as she was nearing the end of her tolerance of the home vent. She sure lets us know when she's done.

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!

Happy Half-Birthday, Norah!

Well ladies and gentlemen, we've made it six months with our tough little girl. Her life has been saved more times than I'd like to remember, and every scare, every bit of heartache, and every ounce of tough work has been worth it. She is the warmest, happiest baby I've ever met. Though we'll more than likely be celebrating her first birthday in the hospital in July, it will be the best birthday ever.

Nom nom nom!

Look at that playful girl!

Had to sneak in this too-cute photo taken after Harper came traipsing into the living room wearing my glasses.

A few weeks ago, Norah had a dance party with one of our favorite nurses, Cecily. Though developmentally behind due to her medical issues and life in the hospital, she does really well sitting in the Bumbo chair.

Dexter vs. Squeaky Toys

Here's one of our first videos using the Flip. There is some slight compression so that it will play smoothly online, but doesn't look too shabby. Looks even better when played locally on the hard drive.

Dexter, our hero, is quite the dashing leading man, and as you can see, Sinister Squeaky Toy has no hope of survival. Danger! Excitement! Dexter!

J