Prologue

Someone might crawl soon!

Has this past two years been a prologue of what may be ahead? I'm not sure... but I do know that it is not our entire story. Despite all we've both endured and enjoyed over the past 22 months, we've only just begun. And now we look forward to the next chapter.

Norah is coming home. 

No - she isn't coming home today, but the end of our hospital stay is in plain sight. Norah has now been on the home ventilator since 8am Tuesday. If she can stay on it continuously for one month, our girl will finally discharge to home. There are many tests and trials ahead for the next month, but everyone is very optimistic. I told Jeff that it will take quite some time at home for me to truly believe that no one is going to take our girl away from us.

This is not a guarantee that things will go as hoped. She could get sick. She could simply not do well on the home vent for so long. Her recurring labs could come back terrible. We don't know what will happen. But again, we're all optimistic.

I believe in Norah, and I believe in our family. We're almost there. Coming home will not be easy. I will be her nurse (and we joke that Jeff will be our CNA). We will be doing a different sort of juggling, but it will still be juggling (likely with less sleep involved). But our family will be happy, healthy, and together... and that is what matters. Thank you all for your continued generosity and support. It was my (somewhat) secret hope that Norah would be home before her second birthday, and it looks like that just might happen. I may not have brought a baby home from the hospital, but I'll take that silly, sassy toddler without any complaint. Let the countdown begin.

Sleeping sweetly on Saturday's day trip...
for the first time ever in her own crib at home.

Best Mother's Day EVER

I don't care what anyone says: my Mother's Day tops that of anyone else on the planet.

Last Tuesday, our insurance company told us that we can take Norah anytime, anywhere without permission, so long as it was restricted to a day trip, and not overnight (which is fine since she needs the ICU-only ventilator at night). This. Is. A. Huge. Deal. We're planning to take her every weekend: the zoo, the park, parties, and most importantly - doing nothing at all at home. But without question, Jeff and I agreed that the first thing we wanted to do was visit his family in Logan, a good drive northward. The next family get-together just happened to be on Mother's Day. It was perfect. It was difficult to keep this secret, but we knew that the payoff of a big surprise would be worth it.

Norah cuddling with her Grandma

We got to the hospital at about 10:45am, and didn't have her back until almost 8pm! She did great in the car, sleeping most of both ways. When we got to Jeff's parent's house, we parked on the far end of the driveway, and went through the garage, as to not give away our surprise. We were the first to get there. Jeff's mom opened the interior door to the patio, greeting Harper, then Jeff, then me, then.... NORAH! She squealed in delight, immediately fighting tears. She could hardly believe we had brought her with us. Jeff's dad said that the moment he heard his wife's reaction from the other room, that he immediately knew why.

Enjoying my in-laws' gorgeous backyard

It was so fun to sit in the living room, watching everyone do double takes as they came through the door, realizing that we had a very special guest with us. This was Norah's first time outside of her little 25-mile radius. This was the longest duration she had been away from a hospital since she was an itty bitty fragile baby. Everyone commented on how healthy (and beautiful) she looked. We ate dinner together, played, cuddled, went outside, and Norah met lots of new faces. As usual, it was sort of like having a celebrity in our midst. One of the most exciting parts of this day was Norah finally getting to meet her paternal great grandparents. G&G Gunnell had yet to meet Norah since they can't easily travel. They were thrilled to meet her, and fell instantly in love. It meant so much to Jeff and I that Norah spent time with everyone, especially them and her Great Grandma R (my mother in law's mom). The three of them are so wonderful, and I just can't say enough great things about them. In many ways, I like to think of Great Grandma R as the white version of my own Mima - my filipina lola that passed away a few years ago. And G&G Gunnell are the sweetest, most cheerful couple you'll ever meet. I just love them!

This photo sums up their relationship

As usual, navigating Norah's equipment was no easy feat... but this time we had loads of help. Every time we moved from room to room, we carried Norah (of course), the ventilator, the a/b monitor, the oxygen tank, the suction machine, miscellaneous medical supplies (maintenance and emergency types), and all of the tethered tubes, wires, and power cords. One of these days I want to hold it all and stand on a scale to see what it weighs. It's madness, but it's worth it. This girl does not travel light. More still, we had her diaper bag, and other random bits that were with us but not necessarily taken from room to room.

So much happiness in one photo

As the day came to a close, Harper said that he didn't want to take Norah back to the hospital. He said that he wanted her to stay and come home with us. I think he can sense that our days of living in the hospital are numbered. We're yet another step closer to drawing that "Get out of Jail Free" card from the deck. Norah didn't want to be left there, either. Jeff and I told and signed to her that we were leaving, and she started to cry. Can you even imagine having to leave your little toddler at the hospital every day? Can you imagine your visits being borrowed time? Let me tell you, it's the pits. But there's that light at the end of the tunnel. And we're ready.

Take a sad song, and make it better.

May 29th will mark one year since we made the big move to SDCH. Norah was much healthier than the prior attempts to transition to the long term care facility, and we had a better plan in place. But we were still nervous. We had mixed feelings about SDCH. It was there that she died for nine minutes. But it was the staff there who not only shared in the grief of that awful day, but also helped to bring her back to us.

As to be expected, we hit a few bumps in the road after moving back. One day in particular, Norah was having a rough day. I had a hard time getting in touch with the nurse that evening. After three attempts, I was in the car at 10:30pm to see what was going on. I had expected to see her alone, crying in her crib. Instead, I walked into her dim room at almost 11pm, finding Norah in the arms of her aide, Chris. She was rocking Norah, singing "Hey Jude" as a lullaby.

As my readers may or may not know, Jeff and I are huge Beatles fans. Jeff's brother Jared played "Blackbird" on his guitar as I walked down the"aisle" of our beach wedding. Our first dance as husband and wife was "Here, There, and Everywhere". We have been to see the Love Cirque du Soleil show in Las Vegas. To find Chris taking such sweet care of my girl was so touching. It was a very special moment that I will always remember.

Chris was one of the big contributors to our trust-building. She was there five (sometimes six) days a week, taking perfect care of Norah. She tended to her medical needs of course, but also to her emotional and developmental needs. While many have played their parts in Norah's development, Chris wins extra points in this department. When Chris was on shift, we never worried about Norah's needs being tended to.

Chris recently took a fabulous career opportunity at another hospital. While we were beyond excited for her, we were of course crushed. And let me tell you: everyone agrees that SDCH isn't the same without her. Even Harper asks about her regularly. On her last day, I presented her with a special gift. Made with bits of Norah, and bits of Chris, I hope this mixed media canvas will remind her of how she has changed Norah's life (and that of many others). Thank you, Chris. We love you!

A Long Day

With Norah's skeletal dysplasia, c-spine (neck) instability is a known risk. We had been told quite a few times that her x-ray films and MRI were "reassuring". However, we all wanted to formally clear her for c-spine stability, so we were referred to a pediatric neurosurgeon to take a look at the images of her neck. We generally prefer to cram in as much as we can when we visit Primary Children's... but this particular day was more taxing than most medical transports.

Little girl in a big machine

Prior to her appointments, Norah was happy and playful. Our first stop was imaging, for a CT scan of her neck. We had quite the entourage in there: a doctor, a nurse, a nurse practitioner, a respiratory therapist, two imaging techs, and the SDCH medic. She is really difficult to sedate. As expected, she resisted the initial medication, so we had to place an IV and give her something more. This second medication was really hard on her, as I'm pretty sure its effects were scary. Her heart rate shot up, but she was such a good brave girl. I had to hold her head while she went through the machine because she was bobbing her head with each breath, a definite sign of distress.

We spent a little time in sedation recovery, where she spiked a temperature. We stuck around there long enough for a dose of Tylenol and a quick (tube-fed) breakfast. We went to see the neurosurgeon next, who had ordered the CT scan. Despite having the detailed scan, he wanted additional xrays. By that time, we were running late for the orthopedic appointment, which was the original thing on our agenda for the day. So we went up there, took a hip x-ray in the clinic, then had our consult. We then went back down to imaging for the additional x-rays of her neck. Norah by this time was beyond upset, exhausted, and uncomfortable. She was tired of being poked, prodded, and forced into positions that she wanted nothing to do with.

We went back to neurosurgery yet again. After a long wait, we finally got back in to see the doctor. He gave us news that we did not expect. It was his opinion and diagnosis that while her cord looks to have plenty of space (so is not compressed), Norah has an unstable c-spine. We had gone there to get cleared, but were given the opposite result. He answered my questions (I could go into detail if you like, but this post is long enough as it is), which I greatly appreciated. But here's the thing: while I don't doubt that he is an extremely skilled doctor and surgeon, the reality is that there are no skeletal dysplasia specialists in Utah. Sure, this doctor may see every child in Utah that is even remotely similar to Norah... but that's going to be a tiny handful of patients.

Let me back-track a bit. What does c-spine instability mean? It means that she's at heightened risk for a spinal cord injury. What could happen with a spinal cord injury that high up her vertebral column? Well if something really bad was to happen, it could mean paralysis (from the injury all the way down) or death.

That isn't going to happen to Norah.

At this point, we've decided to stay the course (meaning no immediate surgery, and no collar). We'll go in every 3-4 months for more xrays (don't even get me started on the topic of radiation exposure) and a follow-up with that doctor. We'll make sure that Norah isn't looking worse. Hopefully she will improve. Hopefully she won't need fusion surgery. Hopefully this doctor is wrong altogether. Hopefully he just doesn't see enough of these skeletal dysplasia kids to understand that they are hypotonic, and every part of Norah's body is expected to be floppy for awhile. Hopefully he just doesn't understand that Norah's bones are and will be late to ossify, and his films don't show the cartilage  Hopefully we don't have to go all the way to Delaware for a second opinion.

Such a long day

One of the most draining aspects of the day was what it did to Norah. She was miserable. My heart broke every time she would reach for me to take away the sad, scary things that were happening to her. But I couldn't take those things away. All I could do was try to soothe her with words, try to distract her,  and tend to needs like suctioning, wiping tears, fanning her overheating body, and trying to help her be as comfortable as possible. I hate feeling helpless. Even worse, I hate that she wasn't getting the remedy from me that she was asking for. I'm supposed to protect her. Of course I know that no one can protect their children from everything... but it upsets me that she has to go through this. It upsets me that she doesn't understand why these things have to happen to her. It upsets me to think that this is her life, and this is all she knows. Our world lies within hospitals. These people and machines help us to keep Norah alive. It's a rocky start to what will be a trying life of more doctors, surgeries, interventions, and everything emotional that goes with it. But it's a life, and we do our best not to take that for granted. Though we often feel so weak, our strength comes from Norah's light. It comes from knowing that Norah is destined for greatness. For now, all we can do is fight for her and love one another with an intensity and purity like none other.

iheartcolum5k

As mentioned before, our wonderful friends, the Pack Family, is hosting their second annual iheartcolum 5k in memory of their beautiful son Colum. I've mentioned the Packs in my blog before. I could go on and on about how much I adore this family. We have much in common, and while our experiences are not the same, we understand one another in a very special way. Our lives have intersected, and I feel so connected to them.

This year, the annual iheartcolum 5k will benefit Norah the Brave. The raised funds will help our family in so many ways. Norah will be two years old in July, and she still lives in the hospital. We're working so hard to get her to home for good, and then the next challenging journey will begin when tending to her medical needs at home.

Date: Saturday, June 29th, 2013
Time: 8:30 am
Location: American Fork, Utah
Registration: iheartcolum.com (this will guarantee you a t-shirt on race day)

More details are available at the registration website. If you can't make it to the race, arrangements can likely be made to get you a shirt so you can run (jog/walk/crawl) by proxy! Alternatively, donations here on this blog (using the donation button to the right) will be graciously accepted. And if you can't donate, simply passing on the event's information could greatly help. Thank you all for your enduring support, love, and affection.