Hope

For some time, it had been my secret wish that Norah would be discharged to home by her second birthday. It doesn't look like that is going to happen. Try as we might to not get our hopes up, it's nearly impossible not to. There was a light at the end of the tunnel, but we were only seeing a lamp, not the exit.

Norah is a slow grower. We know that she grows at about half the rate of other kids her age. She is doing amazingly well on the home vent (now on it 16 hours per day), but we are still waiting for her to get big enough to meet the FDA minimum weight to take her home. However, we have a medical equipment company likely willing to let her go home when she's at the flexible end of that weight goal. So we may be able to take her home at 8kg (17.6lbs) instead of 10kg (22lbs). This is a huge deal. It means that while we won't be home by her second birthday, we will likely be home sometime this year. It's the homestretch. There is that light at the end of the tunnel.

I don't want to get my hopes up, but it is unavoidable. I don't like telling people this because things tend to not go as planned. I'm only blogging about it because I'm so often asked about a potential discharge date, and I have a hard time not being honest. So for now, we will continue on our path. We will continue to play and laugh together while at the hospital. We'll continue to long for her when we are an incomplete family at home. We will continue to make the best of things, and continue to hope... Because I suppose that getting our hopes up is all part of the roller coaster that we're on.

Stoma Revision

Every few weeks, Norah's trach tube gets changed out. It helps prevent infection while also helping make sure the tissues don't decide to grow too much around her trach. Norah is NOT a fan of trach changes. I think they are painful and a bit scary for her. Without going into gruesome detail, I'll just say that blood, sweat, and tears are almost always involved involved. A few weeks ago, when they respiratory department tried to change her trach, they could hardly get the old one out. Which naturally meant that the clean one could barely get in either. Remember what I just said about tissues growing around her trach? That had clearly happened.

They called our ENT, who got us into the operating room that very week. He is so amazing, and takes great care of us. We were surprised at how fast everything happened, but before we knew it, we were prepping for another overnight stay in the PICU. In addition to scopes and removal of that recurring granuloma tissue, our ENT did a full tracheal (airway) stoma (hole where her trach goes) revision, where he basically cut away scar tissue and opened her stoma wider. Hopefully this will slow down that dang granuloma growth, too.

Resting after some morphine.

Recovery was much more difficult than past trips to the OR (this is Norah's sixth, for those keeping track). Her stoma was raw, but is now healing nicely. She was in so much pain when she woke from anesthesia, that we had to give narcotics this time. She would just restlessly toss and turn in my arms, crying from the pain. Fortunately, she perked up right before I went home, and we had one of our most favorite nurses ever that night (love you, Andrea). I was able to go home and rest easy that night because I knew she was getting the best care possible.

Post-op playtime after finally feeling better

As far as progress goes on getting her home, she is up to 14 hours on the home ventilator, with 3 of those being in a mode that simply supports her breaths with pressure, but makes her do much more of the work. She still has a lot of growing to do before we can talk about a homecoming. But I will say that since it won't likely be before her second birthday, we're already thinking of a day trip home for her birthday in July.

I'll do a separate blog post soon, but many have asked me about the iheartcolum5k, benefiting our sweet Norah. The facebook page is here, and the website for registration is here. Hosted by the Pack Family, it will be held on Saturday June 29th at 8:30am, in American Fork, Utah.

Trust

Trust can be challenging for any parent when forced to share care giving duties with others... especially those that are outside of one's circle of family and friends. We trust Norah's care team to treat her like they would their own child. Though she is strong, she is also quite fragile. She depends on so many outside interventions, technologies, therapies, and treatments to not only live a full life, but to live at all.

Let me preface this story by stating that Norah is currently happy, healthy, and sassy as ever.

On Monday, the respiratory therapist assigned to Norah made multiple huge mistakes with Norah's ventilator. These mistakes persisted from 8am until I got there at 4pm. I won't go into detail, but I will say that these mistakes were completely hers. I do not blame SDCH; I do not blame nursing or the respiratory department itself. Despite the bi-hourly checks, nothing clicked in this RT's head to tell her that she had done something wrong. This therapist alone is at fault, and I honestly hope that she knows this. This is not a slight to her as a person. It is what it is.

So who do we turn to when our trust is broken? These mistakes could have potentially caused her permanent damage, or accidental death. (I hate even typing that...) What do we do when the person entrusted to care for Norah does something that could have been catastrophic? We turn to those we love. After notifying Jeff, I told two of my closest friends over text message, and without my asking for help, Cecily and Jaci were walking through the door of Norah's hospital room about ten minutes later. Boy were they a sight for sore eyes. Not only are they incredible nurses, but Cecily and Jaci are "Bulldog 1" and "Bulldog 2", respectively. They had to be sure that Norah was okay. They had to be sure that I was okay. They give us such unique support being that they are nurses, they are my friends, and they have become my sisters. I love those girls.

So what happens next? Well, an incident report was filed. It will be discussed by the doctors, directors, and corporate honchos. They will come up with detailed, actionable items that will help prevent this from ever happening again. Additionally, I had wonderful discussions with both the attending pediatrician and the Respiratory Director. They were both wonderful, especially the Respiratory Director. He was apologetic. He was angry. He has a sweet spot in his heart for Norah, and he seemed genuinely angry with Monday's events. SDCH understands that we put their trust in them. I really do have faith that they will be more vigilant than ever in paying attention to detail.

Trust is such a fragile thing. While I trust SDCH, I am so grateful that we've never missed a day with Norah. I hate to think what could happen if we weren't there daily - and that is true regardless of the hospital in which she lives. 

Growing Up

I've had several friends mention my lack of blogging lately. I know. I'm not going to say it's because I've been busy. I'm not going to say it's because I don't have anything to say. The truth is, it is hard to write when I grow weary of my own thoughts and emotions. I don't want to complain. I don't want to live in sadness, nor do I want to constantly feel like I have to force myself to stay positive. Well, I suppose I do the latter is just part of how I handle our situation. And in truth, it isn't always forceful. There are so many beautiful things and people in our life. It is just hard. And I feel like such a whiny baby when I complain about how crappy things are for us. Yes they are hard. Yes others have it more difficult throughout the world. Much, much, more difficult. It is both challenging and easy to maintain perspective. We see so much sadness in the lives of others, and while we sometimes feel like we have a bum deal too, we are energized and comforted by our perfect family and all the love around us. So I often feel conflicted about my feelings. How's that for a mouthful?

We have been off and on sick for the past month. Fortunately, Norah hasn't had to make a trip back to the PICU. We, along with the staff at South Davis are pretty aggressive at doing what we need to keep her from going downhill. That has meant steroids, albuterol when she's wheezing, extra suctioning, extra vitals, and extra measures towards preventing the spread of illness. Jeff has had to make some solo visits, and Norah is (sort of) getting used to seeing me with a mask. She hates the mask. I think she is a bit afraid of it, being that masks and gowns at SDCH typically mean that a trach change is coming. She tries to pull it off my face, and sometimes she cries, but I do what I can to remind her that I'm not going to do anything mean, and that I am just going to play and cuddle. The other good news is that she is still doing 11-hour sessions every day on the home ventilator. She needs to tolerate it 24/7, then also grow big enough so the FDA will "let" us take her home for good. She is up to 7.3 kg (16 lbs), and she needs to be 10 kg (22 lbs)... which is proving to be slow-going. The unfortunate thing is that the respiratory director still considers her to be the most fragile (respiratory-wise) in the entire hospital... and that is with a handful of newer babies that use the ICU ventilator, too. Hopefully he only says that because he is so attached to Norah, and has seen how scary things have been with her. After all, he was one of the key people that helped bring her back to us on quite possibly the worst day of our lives.

Norah is so funny lately. She loves to hang upside down off of her Boppy pillow or my lap. She laughs, she plays, and she is so very smart. She rolls everywhere in her crib, as well as sits up in it. I'm sure it's just a matter of time before we have to start putting the rails all the way up to the top. I hate that - it's sort of like a cage. She is still the cuddliest girl in town, she still loves to play with Harper's cars, and give him a smack when he tries to hug or kiss her. She always has mischief all over her face. She is social, but she demands that all new people earn her respect and attention. She is 20-months going on 20-years. I love her.

We are preparing Harper for kindergarten. I made a chart for him to put up stickers when he completes a kindergarten-type activity. So far it has been working out great. Just yesterday, we got crafty by each drawing pictures of our family of five (I am not pregnant - Norah's ventilator is our fifth family member). Next - and this is the big one - will be social activities. I've been on the hunt for local community activities that we can go to... hopefully I can find some that will work with our crazy schedule. We recently did the "Kindergarten Round-Up" at his school. He was super shy at first, but by the end of it, he was ready to run around with the other kids.

Both of our kids are really growing up so fast. I just can't wait to get them both under the same roof for more than a few hours.