Friday, September 28, 2012

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.



Thursday, September 27, 2012

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.

Sunday, September 23, 2012

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.

Our Fifth Anniversary

Has it really only been five years? Jeff and I have been through so much that it feels like more. In a good way, of course. On this special milestone, I wanted to do something special for Jeff. I made terrarium replicating our wedding scene. The sand, driftwood, and stone are from Pescadero State beach in California, collected when we took Harper there on his first birthday. The wine corks are from our wedding reception, and represent the huge logs of driftwood on which our guests sat at the ceremony. The twine was leftover from our wedding favors, and I painted the little figurines to look like us on that perfect day. The live moss, blue shell bits (for water), and fence were craft store purchases.




How did we spend our anniversary? We (I) couldn't stand waiting, so we swapped gifts the night before. Jeff's gifts took my breath away - he is just so thoughtful. The actual day was great, though we spent a little more time than I would have liked at the tattoo shop. Yes, I said tattoo! We designed this fun tattoo below, completely on our own. If you know us, you know that we are huge video game nerds. So the Peach and Mario are us, and the "high scores" are our anniversary date (with our combined initials), and the birth dates and initials of our amazing two children. We got the exact same tattoo, done by the same artist, who is really fantastic.



Wednesday, September 19, 2012

Overcoming Fears

Everyone is afraid of something. Fears are often rational - fear of loosing a loved one and/or child (this one hurts just to type it), fear of pain, fear of tragedy... but some are irrational. I know that I have two irrational fears. The first is swimming. I had some pretty awful childhood experiences that have left me with a fear of swimming. It isn't so much the act of swimming that freaks me out, but the fear that someone is going to drown me. Let's just say I had a couple of close calls as a child, at the hands of someone else, that are quite still quite vivid all these years later. I rationally understand that those around me aren't going to hold my head under water, but there is a disconnect somewhere, and it really freaks me out to be around people + water.

But that's not what drove me to write this post. My other fear is of the dentist. Now, I know I'm not alone on this one. There are countless people out there that are fearful of the dentist. So when I started to notice a toothache a couple of weeks ago, my deep anxieties began to kick in. It was getting so bad that I knew I had to find a dentist and make an appointment. With Jeff's help, I did just that.

A few days before the appointment, the dentist was all I could think about. But my mind kept going back to sweet brave Norah. People are always poking, prodding, injecting, waking, and in general bothering her. I thought about her twice daily trach cares, when they change the ties around her trach, clean the site with swabs, apply cream to her neck, and change the dressing. I'm sure it's no walk in the park. I thought about the trach changes that are done every two weeks. They pull the old one out (which is a tight fit), and quickly slide the new one in. It almost always bleeds. And then there is her ventilator - I can't imagine what it must feel like to do those Trilogy (home ventilator) trials. More than anything though, I especially thought about her oral aversion, and how she used to resist opening her mouth for anything... but has now really come leaps and bounds to overcome it.

So when it came time to sit in that dentist's chair, I closed my eyes, and saw my sweet Norah. I saw her playing with her oral suction. I saw her smiling. I also saw her crying through the difficulties that she endures. And I thought of how she must feel while going through them. And I thought of how brave she is. And the dentist visit was more or less... well... easy. And guess what? I have a follow-up appointment tomorrow, and will make another after that to get more work done. And I'm totally okay with it. It definitely helps that this new dentist is fantastic, but I have learned that there is always perspective to be had when it comes to life's little dramas.

Thank you, Norah. You are simply amazing.



Tuesday, September 11, 2012

Five Years and a Scary Start

A couple months after Jeff's surgery in 2007
About five and half years ago, on February 5, 2007, Jeff had his 29th birthday. We had just met, he had just proposed a couple days prior, and on this day... his birthday... he had gone in for total spinal fusion surgery. His third major surgery in about a year (he had just had each of his hips re-done, six months between each surgery). And guess what? I kept a journal at the time, that I just re-found.

I was living in Phoenix at the time, while Jeff lived in Salt Lake City. His surgery was at the University of Utah hospital (where Norah was later born). That day was really difficult. I thought I'd be able to handle it while living a state away. I had no idea what we were in for. I received updates from his sister Emily, who I loved immediately upon meeting a couple months prior. Emily, this is what I wrote about you back then, when we hardly knew each other: "Today Emily and I cried on the phone together. She said that her mom was so strong, but that she's a big baby. I told her that we'd be big babies together."

The surgery took pretty much all day, and she was great about giving me updates. I wrote in the journal to Jeff on his birthday, "I had a rough time today. It was so hard not being there for you, and I wish that I had planned ahead." It was too difficult to be away from him. He was taken to the ICU post-op, and was there for a few days. He called me, but his voice was so scratchy from being intubated. It was too much to bear, so I booked a flight for February 8th. It was a good thing too, because in the wee hours of that morning, after he had been moved to the floor, he coded from a pulmonary embolism (a blood clot dislodged in his lungs). After being stabilized, he was returned to the ICU. While on the longest flight of my life, I wrote, "When you didn't answer this morning, I had a feeling that something was wrong. You just have to wait a little while longer, and I'll be there by your side to help you feel better... please don't leave me."

Jeff has a big family of ten. I should have been nervous to meet most of them, but things were so crazy that I wasn't nervous at all; I didn't have the capacity for it. I will always remember meeting his mom, Carol, for the first time. I stepped into Jeff's ICU room, where her deft hands were busying themselves with a crochet project. She looked up, and without a single word passing between us, we hugged. It wasn't a regular sort of hug, either. It was a clinging-to-hope-and-each-other sort of hug. It was perfect. We cried while holding one another, which woke my sleeping prince. On that day, a miracle happened, and Jeff smiled at me through his huge hockey mask. I remember being so grateful to the machines keeping him alive.

I went on throughout the journal, writing to him about why he needed to live. We had our life ahead in Seattle. We still needed to have our perfect wedding on the beach. We were going to have babies together. A doctor told us that we were lucky. They saw about a 50% mortality rate from pulmonary embolisms, and there was no obvious factor that showed who lived and who died.

My/our boss let me work out of the SLC office for a week. I would go to work, stay the night in a horrid green recliner at the hospital, then repeat. I was given gracious offers to stay with various people, but I didn't travel all that way to be with them. I was there to be with my sweetheart.

Jeff was in the hospital for a month. It was a long month. We were all surprised that he had to be there so long. Little did we know how much time we would spend just next door, at Primary Children's PICU. And little did I know how intimate I would become with medical equipment, similar to that wich kept Jeff alive. Equipment just like that which keeps Norah alive.


We are so thankful for everything we have. Jeff and Norah are the strongest people I know. I always say, that Jeff has more reason to complain than anyone, yet he never does. We can now add Norah to that statement, too. I love our sweet family. I wouldn't have wanted to have babies with anyone but Jeff. Our fifth anniversary is right around the corner, and as uniquely difficult as our life may be, it is filled with such love and joy that I never could have imagined.


September 22, 2007: Our perfect day at the beach.

Monday, September 10, 2012

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!




Friday, September 7, 2012

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?

video

Related Posts with Thumbnails