Prunes and a Movie

Aside from cuddles with mama, there are two things that Norah may love best: watching movies and oral feeds (though not at the same time). She was playing with her Pez Dispensers (another favorite) when we turned on a movie. The first two photos was the result. I know, for those that may not be used to it, she has a lot of equipment in these photos (vent circuit, feeding tube, etc etc etc). Such is our life. The last photo is pretty self explanatory.

Prunes!

Harper's Fourth Birthday

Below are some photos from Harper's birthday party a few weeks ago. I love the contrast between Harper and Norah's parties. It is very fitting that Norah's party had a bazillion guests, while Harper's party was small and quiet with only a few family members in attendance.

We went to the new City Creek mall in SLC so we could check out the new Disney Store. Of course, he picked out a toy from Cars 2. The Disney Store only made me want to take the kids to Disneyland. I could live there, I tell you. Harper is saying now that he wants to go to Disneyland. I told him we want to go too, and that the four of us will go together someday... but Norah has to break out of the hospital first. He isn't too thrilled about waiting. Gotta love the (lack of) patience of a four year old. The photo left is of Harper checking out the fountain at the mall. The new mall was pretty, but not necessarily anything to write home about. Although, I suppose that's exactly what I'm doing by writing this. ;)

Norah may be the saddest crier ever. To all the parents out there that wished their child had a mute button, let me tell you: soundless cries are far, far, far worse than the loud ones. I hate it when she inconsolably cries. Her entire body heaves heavy sobs, she covers her face, and huge tears rush from her eyes. And there isn't a single sound. Jeez, it breaks my heart. Just like all siblings, Norah was grumpy on the day of her brother's birthday party. Maybe she knew we were off to have fun without her. It is the second year in a row that Norah has missed her brother's party. Let's hope we don't have to repeat it a third year in a row.

Harper wanted a Super Mario cake for his birthday. Of course, I couldn't find one so had to make one. The hat was the most basic idea for a novice like myself, and it suited him perfectly. The strawberry buttercream was amazing.

He tried to pretend like the Happy Birthday song was NOT happening. He just turned his head away from everyone and hoped we would all go away. At least he didn't throw a fit.

He loved blowing out the candles. If all goes well, we'll probably have to do this outside next year since flame + oxygen don't play nice together. 

Everyone loved his new Angry Birds game! We were so glad he didn't get many toys this year. He has WAY too many.

Donkey Kong Jenga is super awesome!

Nervous

Sleeping beauty and her prized 60ml syringe package
(Look at all of that hair!)

Fortunately, Norah's positive result for MRSA was merely a colonization. MRSA is everywhere in hospitals, especially long-term care facilities. It is a low-ish population, and she hasn't shown any signs of infection. We're relieved, but we also were never super worried to begin with.

Norah has been feeling better in the last week or so, but has been fighting naps lately. She gets pretty crabby when she's tired, and it's so difficult to not give in to her tantrums. I love when I get to experience typical parenting woes instead of only being buried in the intense worries that come with a medically fragile child.

On the topic of worries... Norah's soft palate (the back of the roof of her mouth) cleft repair is scheduled for Monday September 24th. We're nervous, but mostly because it's a full surgery with full anesthesia. Her ENT Dr. Jeremey Meier (who also performed her trach surgery as well as countless bronchoscopies) is one of the few local pediatric ENTs that do the cleft repairs, as opposed to referring out to plastics. We adore him, and like so many of Norah's specialists, Norah is one of his favorite patients. He will do what's called a z-plasty (which will also stitch together her split uvula), which is considered the best treatment for a cleft in the soft palate. He said if all goes well, she hopefully won't need a follow-up surgery. I'm glad it's just her soft palate, which is all soft tissue, as opposed to a hard palate, which is bone. Oh - and a word to the wise: I would not recommend a Google image search for z-plasty, unless you have a high tolerance for graphic medical images. Even when adding the search term "cleft", it will pull up some non-oral images that are quite graphic... even some of the oral images are graphic for that matter.

I talked to a nurse friend (Cecily of course) who has made several trips to Guatemala with Hirsche Smile, a team that does charity palate repairs. She said that those kiddos typically only get Tylenol to ease their post-op pain. Yikes. So we consider ourselves fortunate to have access to such great medical care. Norah will certainly get more than Tylenol, and as usual, Cecily helped calm my anxieties. When our family is in a better financial position (likely to be far, far, far in the future), I sure would love to donate to a cause like Hirsche Smile, to help them give care to kids that were born to unfortunate circumstances, with few places to turn for help. When I see these families, I feel guilty for feeling like our own financial situation is bad. I suppose it is hard for us, and that's what matters, so long as we maintain a humble world perspective.

As far as recovery time goes, we're not yet sure. It could be an overnight stay in the PICU, or it could be a week. Dr. Meier said he'd ideally like to see Norah back to her baseline and feeling great before she goes back to South Davis.

On a lighter note, who would like to see Norah play with her suction tubing?

Germ Party

Norah has been feeling crummy for the last few days. She's been a little grumpy, a little restless, and has had some viral-like symptoms. They did a bacterial check of her sputum a few days ago, which I just found out today came back positive for MRSA: Methicillin-Resistant Staphylococcus Aureus. Yes, there's a "staph" in that name. The "MR"means that it is resistant to standard antibiotics that treat typical staph infections.

Before anyone freaks out, keep in mind that it's important to read the specifics of the results. If there are just a teeny tiny few little germs in the pitre dish, it would likely be a contaminant. MRSA is actually quite widespread, especially in long-term care facilities. It can be found on clothes, skin, etc. Plus, it lives for a long time. So if an itty bitty fleck of skin made its way into Norah's sputum sample, that could be the cause, and it would mean that the sample was contaminated.

Having a trach means that colonizations of bacteria are sort of par for the course. If you were to swab someone's mouth, you would probably find something similar on a smaller scale. I know, sort of gross, isn't it? Well, since Norah lives in the hospital, it is highly probable that she could get a group of those germs hanging out in a small crowd. This is normal, and doesn't require treatment... just watchfulness. That would be a colonization.

Now, if this little group gets out of control, and starts attacking Norah, this could be an infection. We're talking like Beatlemania proportions here. That is the horrific "staph infection" that most people have heard of. You know - gross wounds or sores that are difficult to treat. Yuck. There is a chance that her trach could become infected in this way, but the stoma (hole) looks too good at the moment to be infected. Well, that's at least my mother's intuition on the subject.

So which is it: contaminant, colonization, or infection? I asked the nurse how much MRSA was found in the sample, and she wasn't sure. I'll know more after my afternoon visit with Norah, but honestly I'm thinking its simply a contaminant or typical colonization. Nothing to worry about. Hopefully.

Happy Birthday, Harper!

With so much going on with Norah, I don't post about Harper nearly often enough. He doesn't know it, but he turned four on Monday. He thinks his birthday is on Saturday, when we're having his party. All day Monday, I whispered "Happy Birthday" to him. He would ask, "What?" ...to which I would reply "I love you", with a sly smile.

Harper never ceases to amaze me. During this last year, we have pushed him so far beyond his comfort zone. He is painfully shy, hating new people and places. That just doesn't work with our lifestyle. We're always taking him to the hospital, appointments, meetings, etc. He doesn't want to go. He doesn't want anyone to talk to him. He wants to be left alone. We stretch him to the limit (and sometimes beyond it). He shuts out the world with video games learns to cope as best he can.

But that's not all. He's smart. He's HILARIOUS. He says the craziest things, as most four year olds do. He laughs. He lights up the world with his brilliant smile. He has really impressive manners when it comes to "please", "thank you", "you're welcome", etc. He is always telling me that I'm his best friend and I'm beautiful (Jeff taught him well), and always telling Norah that she's his "beautiful sweet girl" or his "beautiful baby sister". He's such a charmer. He cuddles me when I'm sad, and to Jeff's dismay, Harper always goes to mommy when he needs a good cuddle.

He's a doting big brother, too. He is so gentle with Norah. He shares his toys. He pats her gently and tells her how much he loves her. He asks how she is after I get off the phone with the nurse. He asks when she'll come home and says that he misses her. Sometimes he even says that he wants to go to the hospital to be with her. I'm enjoying the way they get along for now... I'm sure it won't always be that way, but a girl can hope!

I can't forget to mention his video game skills: that boy is a champ. He will someday play in a Super Mario or Kirby tournament, and will win us millions.

We love this little guy, and are so thankful for him. He brings so much joy to our lives. He has helped us through some really difficult times, reminding us that laughter and smiles are ever so important when life gets really difficult. One of my biggest hopes is that we can show him that our love for him is truly unconditional.

Happy birthday, my sweet, beautiful boy.

Home Sweet Home

Well, we've done it. With the help of our family, we're all moved into our new home. We still have to wrap up things at the old house, but that's mostly cleaning and a bit of yard work. We have a long to-do list here at the new house, but things are going so smoothly. I want to send a HUGE thank you to our family, that helped us move (one load, yeah!), brought us eats, treats, and have continued to help us with unpacking and such. We haven't gotten around to taking pictures yet, but we won't forget to share them with all of you.

The house is amazing. It's definitely the nicest home I've ever lived in, that's for sure. We're calling it our "early retirement" since taking out our retirement money helped us afford it. Oh well - it's what our family needs. Harper has already been asking when Norah gets to come home to the new house. I just hug and squeeze him, and tell him that someday she'll come home. She'll have her own room. She'll have everything she needs here. It won't be easy to care for her with her medical needs, but we're willing to do whatever it takes.

Yesterday we found out that Norah is going to need glasses. Nearsightedness is related to her condition. We have to go to the opthamologist every three months to make sure her retinas are intact. Her retinas looked good, but he did say that she had mild myopia (nearsightedness), and will require glasses when it's age-appropriate. Our appointment took seemingly forever. We were there for hours, mostly waiting. You would think that they would allow a trach/vented patient to be bumped to the front of the line. We had battery life, oxygen tanks, and respiratory fragility/virus susceptibility to worry about, but that didn't seem to speed us through the appointment like it does at other clinics. As a result, Norah hit her new record on the home vent: four hours.

With the excitement of moving as well as Norah's success on transports (with the home ventilator, photo left), I eagerly asked South Davis when they thought she'd be able to go home for a few hours for a day trip. Exciting, right? Wrong. They don't think insurance will allow us to take her home. They think if she's well enough to go home, even for a few hours, she should be well enough to move from LTAC (Long Term Acute Care, with a better nurse to patient ratio of like 1:4) to skilled nursing (where the ratio is something like 1:8). I was pretty much crushed. I wanted to cry. I didn't. I think I'm just too tired of crying so often throughout the last year. I'm still going to hold on to hope that she will be able to come home for a day trip, insurance be damned. I want to show Norah her room. I want to cuddle her in the rocking chair, play on the carpeted floor, have family snuggle time in mommy and daddy's bed, and let her take a nap in her own crib. I want to sit her in the grass in the yard, and show her the flowers and the dragonflies. I want a little taste of normalcy, even if it's only for a short time. Sigh. Patience was never my strong suit, but I'm working on it.