Friday, June 29, 2012

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.

video
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.


Wednesday, June 27, 2012

I'd Rather Be Boring



Oh what a night. Harper, Jeff, and I left the hospital around 7pm. We had a really great afternoon with a fun visit from Norah's best bud, Ava, and her family. We laughed, played, and compared medical notes. Even Harper was super social with Ava's sister, Aspen. In these photos, Norah is in the polka dots, and Ava is in the pink onesie. You're not supposed to compare (specifically with their condition), but Ava's parents agreed that Norah looked bigger, especially considering Norah is two months younger. Take that, insurance denial for growth hormone. It does work!

We had just enjoyed a late, hasty dinner when my phone rang a bit before 8. My reflex to the phone ringing is always nervousness. Yes, always. And this time, when I saw that it was South Davis calling, my heart sank.
It was Norah's nurse on the phone. They had walked in when they heard her vent alarming. She was slumped to the side in her bumbo chair, as if she had passed out. She was blue. Blue, blue, blue.

They pulled her out of the chair (which woke her), laid her down, turned up her oxygen, suctioned her, and talked her through it. She slowly came back. They weren't sure what happened, and why her oxygen saturation dipped so far down.


I tried to be rational. I reminded myself that there was a time when she'd desat more than ten times in one day, and tonight she hadn't even needed bagging. Jeff and I were unsettled, but we decided to give it an hour. I'd call after that hour before unnecessarily hopping into the car. Something nagged at me to go anyway, but I ignored it. Even though Norah hadn't had a true desat in months, I was trying to be rational, after all.

After the hour was up, I called. No answer. I called again about 10 minutes later, and someone answered after what felt like a million rings. The nurse was "not in the unit" and they took a message. Another hour later, and still no call... I called again, and she told me the nurse was swamped, and could she call me back? This was not acceptable. I told her no, that I was coming in. You better believe that got her nurse to call me from her cell phone, in Norah's room. By then, I was already on my way there, doing my best to drive calmly. I hate to say it, but I'm practiced at this sort of anxious driving.



When I got there at about 10:45, Norah was wide awake in the arms of one of our favorites there, our CNA Chris, and she was singing to Norah in a futile attempt to help her sleep. I like to think that Norah knew I was coming, and she was waiting for me. It is very unlike Norah to be up after 9:30pm. The photo (left) is dark, and probably impossible to see on some of your screens, but this is what I sent to Jeff. He was so relieved.

I rocked her for awhile, but she was still wide awake. Her vent was alarming again, so I asked the respiratory therapist to come in to replace part of the NeoSensor (the bane of my existence). When it goes bad, or when there is an accumulation of water, its reading becomes faulty, and delivers itty bitty breaths to her because it thinks she is initiating them when she isn't. Her rate was up to like 125 bpm. Go ahead, try panting that quickly and see how it feels. Not good. I could see and feel her poor little chest fluttering with these breaths, and trying to take some real ones in between. After they resolved the sensor problem, I moved her to my left arm (what I call "assuming the position"), and she all but instantly fell fast asleep. I snuggled on her until about 12:15, when I tucked her back into bed. I got home a little before 1am, where Jeff was still waiting for me, awake. Poor guy. But if I were the one at home, I wouldn't have been able to sleep either. I'm fortunate to have the best husband ever, who lets me fulfill my every need to be there with Norah, when I know he would love to be too. And yes, the poor guy had to get up for work just a few hours later.

So with all that drama, I didn't sleep till about 3am. I've had chronic nightmares since Norah was about 3 months old, and major bouts of insomnia. Though the antidepressants keep me from crying all day every day, I'm sure they don't help with my sleeping woes. The anxiety of our kids' well being, bills piling up, and now lately the added stress of trying to find a home fit for taking Norah home to, really adds up.



Everyone tells me that I'm amazing. They don't know how I do it. They send thoughts and prayers (our family is not at all religious, but we figure it can't hurt). But honestly? I don't want to be amazing. I don't want to be strong. I want to be average. I'd rather be boring. Of course the compliments and words of comfort are sweet, welcome, and even helpful. So please don't stop. I know life will never be "normal" for us, but I sure look forward to things being less crazy someday.

Monday, June 25, 2012

Gratitude and Celebration

Norah will be eleven months old on Wednesday, and she is as happy as ever. Her first birthday is right around the corner. When I think of what it's taken to get this far, I get emotional. I sometimes think about what would have happened if they didn't bring her back to us on that awful day in November. I think about life without our sweet girl, and I'm so thankful that it isn't reality. Some of my readers understand the loss of a child, and for that, my heart aches for you.

To those of you that have been there with us through everything, I thank you too. I thank you for the care you've given, the love and affection you've shared, and the effort you've made to have Norah in your life. And for those of you that have supported us from afar, I thank you too. Everyone's visits, words of support, and huge hearts mean the world to us.

Though it hasn't come without challenges, we've never missed a single day with Norah at the hospital. Our comfort is that she will someday come home. Once she does, we will still have a tough road ahead, but we know who we can count on; thank you. In the meantime, we're going to start planning Norah's first birthday party. Though her birthday is July 27th, mark your calendars for the afternoon of Saturday, July 28th!

Thursday, June 21, 2012

Harper and Emma

At about 6 weeks apart in age, Harper and his cousin Emma are the best of friends... although every once in awhile they can seem like worst of enemies. Below is a picture of them (with Jeff and Emily's parents) when they were just sweet little babies, followed by a photo I took today. I love watching them grow up together. 



Tuesday, June 19, 2012

Ventilator Trials... and Tribulations

Overall, Norah is still doing quite well at South Davis. We've been there for three weeks now, and she is still healthy and thriving. We're continuing trials on the Trilogy 100 (photo left), which is the home ventilator. Some days she does pretty darn well, and others... not so much.

I'm not sure if it's the lack of humidity (we tried an HME & it was too difficult for her to breathe through), the larger circuit, AVAPS vs. SIMV, or perhaps just the fact that it's a different feeling machine, but she just isn't consistent with her tolerance of the Trilogy. (I know, so much jargon. Sorry, but some of my readers may know what all that means.) Perhaps we need to tinker with the settings a bit. I just don't know. Her record trial on the Trilogy lasted 50 minutes, but some days she can't seem to settle into it, and we have to put her back on her Drager when we see that, for whatever reason, she just isn't going to tolerate the trial. These ups and downs are to be expected, and prove that we still have a long road ahead. We do our best to remain optimistic.

In other news, her oral feedings have been going well. In fact, she officially said her first word - well - her first sign, "eat". We let her try "puffs" for the first time (they're like Cheerios, but they dissolve easier) since she's been working on the pincer grasp with her fingers. She didn't know what to think of the chunks in her mouth, but she did seem to be interested in it. When they stuck to her fingers, she shook her hands like crazy to get them off. It was pretty cute. We're going to start increasing her oral feeds a bit, moving from therapeutic to nutritive. Once she can handle some bigger bites, we'll head back to PCMC for a swallow study. And don't worry, PICU peeps, we'll always be sure to visit the unit when we're in the neighborhood!

Norah playing with the best daddy ever on Father's Day. Thanks to therapies, dedication, and Norah's hard work, she is getting stronger every day.

Really tuckered out after a difficult Trilogy trial. My sweet girl is getting so big! I love that little bum!

Sunday, June 10, 2012

Harper and "The Little Hospital"

Harper occasionally asks to go to "the big hospital". But all in all, he has been doing fantastic while visiting South Davis. He is still getting used to the faces there, as are we all. Sometimes he even asks where "Ce-ci-wee" (Cecily) is. 

Harper and Norah have always had the sweetest bond. The casual atmosphere at South Davis is a little easier on Harper, and the relationship between him and his baby sister is continuing to blossom. 

Playtime on the floor mat

Already telling secrets

The lobby fish tank

Watching Norah's favorite, the Winnie the Pooh movie


Thursday, June 7, 2012

Cautiously Optimistic

Here's the deal. We have big news. I'm cautious to share this, because nothing is certain yet, and we still have a long way to go but... well, let me give a little backstory for those of you that may not know all of the details of Norah's saga.

When Norah was first trach'd, it was because her little body caused her little lungs to be restricted from working properly. Oxygen saturation was never a problem, but she wasn't able to blow off her carbon dioxide. Her airway wasn't the problem either; she needed to be on a ventilator so she could be given pressure support to her breathing. Who would have thought breathing was so complicated? Trust me, it is so complicated.

Though I still believe that placing the trach was the right thing to do, at the time no one foresaw that it would lead to such a long hospital stay. No one thought that perhaps she wouldn't be compatible with any ventilator but the fancy-pants ICU-only Drager Evita. The girl has expensive taste.

Things were a little sketchy at first. Norah had a really rocky first 6 months of her life. She was constantly desatting (turning blue). She was needing constant intervention from the care team by bagging her or even that awful day that she needed CPR for nine minutes. I was tired of being the source of the awful code blue alarm in the hospital. But somewhere along the road, Norah turned around. She became stronger. She started playing and developing. She wasn't just surviving anymore... she was thriving. Norah told us what she needed, and we listened. It was with the excellent health care that she received, and love from us as well as all of you, that she began to do so well. Now she has a bright future ahead.

So what's with the long story and the dangled carrot of big news I have? Well, on Wednesday, Norah passed her previous record for her longest stay at South Davis. We had officially been there eight days. It was time to try her on the Trilogy vent (a vent that they don't have at PCMC), which will do a mode that the typical home vent (LTV) won't do. It will do AVAPS (Average Volume Assured Pressure Support), which, long story short, should work for Norah. She did fantastic. She didn't even notice the change. Okay, here is the big news: this is a home ventilator.

We're not going home today, or tomorrow, or next week, but it means that we will probably be home before our original guess of 18-months while we waited for her to grow to be able to take a 50cc breath on the LTV's volume mode. It will take time for her to transition from the Drager to the Trilogy. Plus, she has surgeries coming up in late summer/early fall. They're going to have to teach us a million things before we'll be ready to take her home. We will work up to it with short trips outside, then a few hours out and about, then maybe even a day trip home. It'll take awhile, but we're getting there. The light at the end of the tunnel is still far off, but I have a feeling we've finally passed all of the bends and curves that have prevented us from even seeing that it was indeed there.

Familiar Faces

When we transferred from PCMC's PICU to SDCH, we were told by so many PCMC staff members that they would come visit. I worried that those promises were fleeting, and that we'd be feeling a little lonely up in Bountiful. Can you blame me for my skepticism? Well, it was all unfounded. We've been there for just over a week, and we've already had quite a few visitors. This warms my heart because we sure adore PCMC as much as I think they adore us. Thank you all so much! I've posted some earlier photos, but below are a few photos of some of our visitors just over the last few days... I wish I had gotten photos with everyone else, too. It just means they have to come back!

Two gorgeous girls: Janie was one of our favorite Respiratory Therapists EVER. Norah was ecstatic to see her. The moment she walked up to Norah's crib, Norah's legs and arms were whipping around wildly, and she had the biggest smiles!

Cecily (who at this point needs no introduction) and her parents came for a visit, too. They are the cutest family, and have become part of ours.

Andrea and her daughters came to give Norah a bath, dress her in the cutest orange outfit that they brought for her, and paint her toenails. They knew we would love it, and it fits her perfectly! Finally - a shirt that doesn't fit like a dress, and shorts that don't fit like pants!

She looks great in orange!

Left: Auntie Emily hurrying her hubbs off the phone so she can enjoy cuddle time. Norah, in predictable fashion, wants both Emily's glasses and her phone. Right: Grandma Gunnell reading to Harper during their visit.



Sunday, June 3, 2012

Saturday Fun


Saturday was a good day. I spent the afternoon with a friend, one of Norah's PICU nurses, Angie. We had lunch in Bountiful, then got super crafty in Norah's room. I had bought a plain guestbook for Norah's room so I'd know when visitors came if I wasn't there. It was far too bland, so the first person I thought of to help with that was Angie! As Angie put it, we're going to have to work this one in installments! Time just flew; we had so much fun! I can't wait until we do it again in a couple weeks. Love you Angie!

She also had a surprise for me, a going away gift. I could hardly believe my eyes. The sentiment is perfect for our family, and is a great reminder. I decided to hang it right next to Norah's crib, hoping that she'll catch the energy from it while we work on teaching her to spread her wings. This sweet little canvas is simply gorgeous. Angie, you are so talented... you don't give yourself enough credit! I can't believe you resisted blogging about it!

Before I left for the day, Norah opened a gift from one of my darling high school friends. Miranda had read about sweet Norah, and like most do, fell head over heels in love with her. Thank you so much, Miranda. You still have a heart of gold. <3 Norah loves her new accessories, as you can see!


She loved opening the shipping envelope.

 Norah is making her best model face while trying everything on.

How cute is this headband?!
"But what's that over there, mom? I want the pretty packaging!"

Look at this headband and necklace! "Hmm, what can I do with this? Oh, I know..."

 Peekaboo!

 PEEKABOO!!! Love this face. Thanks so much, Miranda!


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