Friday, October 19, 2012

Finally Catching a Break

Sometimes I wonder when our family is going to catch a break. I figure I have good karma coming my way. I let people into traffic, I wait for pedestrians, I open the door for strangers, I go out of my way to be helpful and courteous to others. I don't have to tell my readers that we've had a trying time during this last year or so.

Well, we've finally caught a break.

We had an appointment with Norah's orthopedist on Thursday. Back in July, he fitted Norah for a hip harness to help push her hips into place. The amazing news? It is working. Her hips feel solid in place. The even more amazing news? This means she has no immediate need for hip surgery! Oh but it gets better...

Right as we were walking into the clinic at Primary Children's, South Davis' social worker called me. She let me know our insurance company approved our request to take Norah for a day visit HOME on Christmas Day. Yes, my wonderful readers, you read that right. For the first time since September 6, 2011, when Norah was only 41 days old, she will be home for a few hours to be with her family on Christmas Day.

Though we have never missed a day with her, we feel that we have missed so much of Norah's life, and it hurts. She hasn't been home since she was a teeny tiny newborn. She hasn't been home since she was struggling to cling to life. She is so different now. She's a toddler (though she doesn't "toddle" yet). She smiles. She laughs. She throws fits. She's still fragile, but nowhere near as fragile as she was the last time she was home with us. She will get to be in her new room of our new house for the first time. She will get to play with her Harper. She will get to roll around on the carpet - something so simple that she has never done.

It will only be for a few hours, and it will be so hard to take her back to the hospital. But it is going to be worth it. It is a dream come true. But there is more that will be bittersweet on this day. This day will also mark the one-year anniversary that our dear friends, the Packs, had to say goodbye to their sweet boy Colum. While my heart will be singing for the temporary joy of a few hours at home with Norah, it will be heavy with sorrow for the pain that my beautiful friends are enduring.

Here's to hoping that nothing gets in our way of this Christmas Day visit. No illnesses, no bumps in the road... nothing. Just a perfect few hours of bliss.

Tuesday, October 16, 2012

A Far Reach for Little Arms

View during practice,
taken by my brother Anthony
who also rows
My mom is amazing. That statement doesn't even do justice to her level of awesomeness. On Saturday, I received a very special phone call from her. She was out of breath, emotional, and it sounded like she was outside. She was calling to tell me that for the first time in her almost ten years of competitive rowing, her team, Solano Rowing Club, won first place. They, competing as a women's team, even beat the time of the men's team. The other teams didn't even come close to their time, as you can see in the photo below. In all their years, they had never won first place.

Here's the kicker - they dedicated the race to Norah.

While they sat in the boat, waiting for their turn, my mom had a moment of inspiration  She told her team about her granddaughter. She said that Norah lives on a ventilator, and has to fight for every breath. And if she can fight, they can too. My mom dedicated the race to Norah, and was determined to race it for her. And they did exactly that. One of my mom's teammates, her good friend Pat, said that she used Norah as a point of meditation, imagining her face in one of the passing windows, as if she was watching the race and cheering them on.

Yes, SRC was really that fast!
Note how far behind second place was!
During the award ceremony, my mom overheard some people chatting, saying that there had to be an error, and there was no way that team could have that time. She faced these people, politely pardoned her intrusion, and firmly said that they had the race official check twice to be sure. I'm so proud of my mom. She's not the confrontational type, but she wasn't letting anyone negate their feat.

It goes to show that Norah's little arms have a far reach. She inspires people from afar that haven't even met her. And for those of you that have met her, you know how incredible she is. Everyone just wants to be around her. There is something about Norah that makes you feel so good. I'm proud to be her mom... especially because she inspires me, too. So for those of you that ever have wondered how it is that our family bears this burden, it would only take a few minutes with Norah to understand just how exactly we manage.




Mom and my brother Anthony at practice
First place!





Thursday, October 11, 2012

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.


video

Friday, October 5, 2012

Empathy

In late August, our brains were still a bit scrambled from the combined (good) chaos of Norah's birthday party followed by the quick search and purchase of our house. On top of that we were having a ton of clinic appointments and transports for Norah, while also preparing for cleft surgery. All of these these things are my attempt at an excuse for missing an amazing blog post from my brother-in-law's wife, Des.

I read it last night, and sobbed like a baby. Jeff did too. It seriously cut right through us so I had to share. You can read it in it's entirety here. It's worth the read, especially with the super adorable photos of Norah being held by her cousins. Below is an excerpt, referencing Norah's birthday party:

It was a joyous occasion and there were so many people there to celebrate. For some of my kids it was only the second time they've seen Norah. They were very excited to get to see her and hold her. I, on the other hand was having a hard time feeling excited and happy and didn't know why. I figured it was cause I was still feeling a little tired and sore from just having a baby and driving in the car for an hour didn't really help. I needed to feed Dreyden so I went to Norah's little hospital room. I was looking around at Norah's home and thinking about her life. As I held my healthy newborn baby, I felt extreme guilt and sadness that Shauna missed out on very basic small things that I was in the middle of enjoying. Simple little things that we probably don't give much thought to. Being able to take my baby and going anywhere I feel like going, snuggling my baby without ventilators, wires and tubes, letting him be passed around the room without the fear of illness, listening to his sweet newborn sound, nursing him, never having to leave him, being able to have him sleep with me in my bed so I can kiss him all night long. All these thoughts brought me to tears.

Here's the thing. I've had some really touching and fantastic conversations with Des about motherhood. Before Norah was born, we discussed the wonders of breastfeeding, co-sleeping, and special quiet time. To read Des' acknowledgement and description of my hardships have really affected me. She is completely right - it is the simple things that hurt the most. I often think about how I was once that mom. When Harper was born, I was completely oblivious to the existence of the crazy world that we are now a part of. I was the mom snuggling her new baby that never left her side. My biggest heartache was Harper's jaundice then minor outpatient urology surgery when he was 18 months old. Even when we found out about Norah's diagnosis during my 20-week ultrasound, we had no idea what we were in for. Of course, even looking back, we wouldn't have changed a single decision. But experience sure does wonders for perspective, doesn't it?

The other piece of this is that I truly admire Des as a mother. She is incredible. She and Scott (Jeff's brother) have taught their kids manners, compassion, love, respect, and tolerance. They've been foster parents too, helping set children on the right path to turn around their lives in such a profound way. They didn't just care for those children. They guided them, comforted them, and showed them how good life can be. Scott and Des think that they are simply caring for these children, but it is much, much more than that.

Des, thank you so much for your love, support, and empathy. I'm looking forward to spending time with you and Dreyden on Monday!

Norah and Dreyden

Wednesday, October 3, 2012

Are We There Yet?

We try to be patient. We really do. But I can't help but occasionally feel like a petulant child in the back seat, constantly whining, "are we there, yet?" Norah is fourteen months old. All but two weeks of those fourteen months have been in the hospital, the majority of it being in the Pediatric ICU at our local children's hospital. It's enough to push us over the edge, but we lean on one another for comfort, support, and encouragement.

This journey has brought us to places and introduced us to people I never would have imagined, but I would trade it all for "normalcy". Yet I would never ever trade that normalcy for life without our perfect girl. I suppose I just go through cycles. Sometimes I am so optimistic and energetic about how things are going. And other times I feel really crappy about the whole situation.

Yesterday we checked off a few more things on South Davis' discharge preparation list. I changed her trach, did trach cares, and not only did I do g-tube cares, but showed the nurse our new method for doing them. All of these things have become second nature now. We're beyond ready to take her home. But Norah isn't ready. Rather, I should say her equipment isn't ready. We are still using the ICU-only vent, with the home vent just a couple hours each day. The only thing standing in our way is technology, or the FDA's approval to take home what works for her. I am often asked if we'll take Norah home when she is off of the ICU-only vent. I look at them like they're crazy. I can't help it. No one will be able to stop me from taking her home once she's able to tolerate the home ventilator on a full time basis. It will be a new and difficult phase of life, but she will be at home where she belongs.

On Monday, one of Norah's RTs said something that really irritated me. I should have said something, but for some reason I didn't. Maybe I was too exhausted after a long day. On our way back to South Davis, I was pushing Norah's stroller in to the building, when her RT said "Do you got her, mom?" When I answered, "always", she said "Well, only until I decide to take her from you." 

Seriously? Who says that kind of thing?! Maybe that's what has me feeling down right now. I love that we share Norah's love with everyone, but she is still our baby girl. She came from my belly. I carried her for exactly fourty weeks and worked like crazy for that successful VBAC. We have never missed a day with her in these long 14 months. We have been through multiple surgeries, 9 frightening minutes, acute illnesses, countless procedures, financial woes, lifestyle changes, buckets of tears, and some amazing triumphs. She has her daddy's double jointed thumbs, and mommy's dark brown eyes. We're the only people that can truly give her cuddly comfort when she's upset. We don't get to give her baths every day. We don't get to dress her every day. We don't get to tuck her into bed with a song or a story. But Norah is still our girl. ...Are we there yet?

Tuesday, October 2, 2012

Back From a Rocky Week

Norah and Auntie Cecily saying "ta-ta for now".
Look at the love they share!
What a crazy week. Things were pretty scary for a few days, but when Norah finally started to get better, we were all so relieved. Man, that girl is as tough as they come. The day of discharge, Norah decided to spike a fever. Apparently she wanted to stay in the PICU. We were having none of that though. We did lots of labs that were reassuring, so we did an evening transfer back to South Davis on Monday (sorry to SDCH with our admit just 5 minutes before shift change!). Our "overnight stay" became a full week, but we weren't necessarily surprised. She is still showing symptoms of rhinovirus, but her nurses and RTs are staying on top of the extra care she needs. As much as we LOVE the PICU and the people there, they have too many dangerous cooties.

Coming back to South Davis this time honestly felt like coming home. I just dumped down all of my bags, unpacked, and gave Norah a very peaceful cuddle in the recliner. Like I said - the PICU peeps are our family. They know Norah better than anyone and have treated every situation both acute and chronic. But it is a very very very sad place. I met a few families during this stay that, as always, tugged on my heart. A family losing their less than week-old baby due to a perforated bowel. A heart kiddo and his mom, newly trach'd, super adorable, and facing a new life ahead of them.

But I also had an amazing experience while there. I met up with my friends, the Pack Family. Oh I love them so much. You can read Kelly's account of our meet-up here. It was so emotional, and so incredible. I felt honored to be able to help arrange things for them, as well as be there to cry with them as we went around the PICU. I'll never look at Bed 2 the same. Kelly and Ryan couldn't be there when their sweet Colum was in the PICU on Christmas Eve and Christmas Day, because they were fighting for their own lives next door at the U of U Hospital. Norah and I were there though, and I feel so deeply connected to this family. I love that they got to meet Norah, though she was pretty out of it post-op on Monday. She was in pain, bloody, sleepy, and loaded up with medical equipment, but they didn't see any of that. They saw our beautiful girl for who she is. It felt so good to be with Kelly and Ryan. Our situations are very different, but as I told Kelly, we've walked down paths with our families that few will ever experience or even understand. We could cry together, curse together, and share stories and experiences without judgement or awkwardness. It was wonderful. (Love you, Kelly!)

Norah trying REALLY hard not to smile!
So what's next for us? Well we will have a full round of clinic appointments with Orthopedics, ENT, Pulmonology, Ophthalmology, Endocrinology, and Augiology. (Is that enough "ologies" for you?) ENT is going to have to go back in to get the rest of that monster granuloma mentioned in my last post. Which means general anesthesia again. We're going to see if we can coordinate it with both her sedated hearing test and hip surgery if Norah will indeed need it. I can't wait to get this round of surgeries and procedures behind us so we can focus on transitioning to the home ventilator. I just want to bring Norah home. So badly.

Thank you all for your love and well-wishes over this really difficult week. Norah can use all the love out there, and we sure appreciate your thinking of us. 
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