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

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?

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. 

The Impossible Choice

Sometimes, I feel a bit helpless about our situation. We make the best of it, and enjoy our family time, but I sure hate when I feel like I have to choose between my two kids. Norah's situation is obviously critical, so Jeff and I do everything possible to meet her needs. But sometimes I worry that Harper has bad feelings about the whole ordeal. I feel like he thinks that we are choosing Norah over him.

Every once in awhile, he'll tell me that he just wants to stay home with me. He tells me that he doesn't want to go to the hospital. He doesn't want to go to play with his cousins. He just wants to stay home. Sometimes he says, "Did you know that someday Norah will get to come home?" We're all looking forward to that day... but he is especially looking forward to it. He craves a "normal" life just like the rest of us.

I know I'm not actually making a choice between my two children, but sometimes it feels that way. My sweet buddy tries so hard to go with the flow, but it doesn't come easily with a personality like his. So when he says he wants to go see his "beautiful baby girl Norah", it is tough to refuse.

I'm pretty sure he's come down with Norah's rhinovirus. Though it is rampant everywhere, we like to take precautions in the hospital. We don't want anyone to get sick on our account, especially the sweet kiddos and their families at Primary Children's. I told him that the only way he could come today, was if he wore a mask and kept his hands clean while we walked through the hospital. And with that, I present Harper, doing something I never thought he would do, wear a mask. Trust me, this is a HUGE deal for him. And yes, I made him put it up over his nose after the photo was taken.

Ups and Downs

Aside from a few hiccups and surprises, Norah did well in surgery. When we went back to the PICU to see her, she was in tremendous pain. Unfortunately, she has her daddy's high tolerance to pain medications. One of the docs said that there is most likely a genetic component to everyone's tolerance of medications.

When we were pre-op, Norah's ENT came in to chat with us. I asked if he could do a bronch to look down her airway since it had been awhile. Thank goodness for Mother's Intuition, because when he did during surgery, she had an enormous granuloma (a build up of tissue, which is an immune response to the foreign object - her trach) completely blocking her upper airway. He couldn't even get it all the first go-around so will have to go back in again soon, or it will just grow back. What would have happened if it hadn't been caught? Well, if her trach had come out and we couldn't get back in, we would have had no way to get air into Norah. None. Her upper airway was completely blocked, so even bagging would have been impossible. I think you can guess what that would mean if Norah had no way to breathe....

I stayed the night on Monday, which was a good thing because she had a really rough night. Then we spent Tuesday trying to manage her pain, and all but failing. Then she had a desat (blue spell) from a mucus plug. She was definitely showing viral symptoms so they sent off some labs. Sure enough, she came back positive for rhinovirus. Man rhino really kicks her butt in a bad way. I knew this would be bad.

On Wednesday, we finally figured out her pain meds. She was even playing for a little while and breathing easier. But I then noticed that she had intense right ear pain (from the new tubes that were put in). Hopefully ENT comes by quickly so they can peek in. Oh- and we had another desat when I picked her up to hold her. I sure hate seeing her turn blue.

This morning I called to check on her. Her nurse said that she was having some major respiratory distress- not unlike that which happened in July. She was clearly freaked out. I've learned that if you've freaked out an ICU nurse, that's a very bad sign. So she's getting albuterol and steroids to help out her lungs and airway. I'm really ready for her to get better. I hate that a little common viral bug puts Norah in the ICU for weeks.

The good news though is that her cleft repair looks good. Hopefully everything else falls into place soon too.

Surgery

Few things are better than post-bath snuggles

Just a quick note to let you all know that Norah goes in for surgery on Monday morning. Her soft cleft palate will be repaired by her ENT, the same doctor who did her trach surgery. Please think of her tomorrow, as we can use all the love and positive/healing thoughts that we can get. We're nervous... mostly about the general anesthesia.

Our check-in is at 11:15am. Who knows what that means about the actual surgery start time. Though it's typically a same-day surgery, she'll stay in the PICU for one night minimum (due to her ICU-only ventilator dependence). After that, it's sort of a wait-and-see thing. The timing of her return to South Davis will depend on her respiratory status, pain level, and overall recovery. The PICU means germs, but we know we're in such amazing hands there. They're still family to us.

As I've posted previously, we've had luck in the rain, and there is rain in the forecast tomorrow. Let's hope that our sweet girl yet again shows us that she's as tough as they come, and nothing will stop her from having a happy, full life. 

Thank you all for the phone calls and well wishes these last couple days. We sure love you.