Thursday, July 24, 2014

Bare Neck

Tonight I saw Jeff doing something that I find myself doing quite often. He and Norah were playing on the floor, when he casually lifted her hair up off of her neck. "Are you admiring her bare neck," I asked him. He sure was. We both do it. We look at her in awe. No trach ties. No trach. No ventilator. No ointments, no skin breakdown, no trach smell. No secretions, no suction catheter, no drain sponges, no CPT. No more hoarding ten different types of wound care products. No more hoarding medical supplies at all in fear that we will run out (which you better believe happened and was AWFUL). I could go on and on.

Truthfully though, while we had it, the trach wasn't so bad. Neither was the vent. I'd go as far as to say that I loved them both. Without them, Norah wouldn't be alive today. Yet we sure love admiring how far we've come. The girl who was stuck in the hospital for 23 months on an ICU-only ventilator took less than a year to shake her life support. Life is good, and we're sure to notice those little things that make it so great.

Wednesday, July 9, 2014

Preschool Plans

Sometimes I can be pretty cavalier about things. The truth is that I'm not always so confident. Of course I knew that Norah would some day get off of the vent and decannulate. There was never a doubt in my mind. I don't really have a whole lot of doubts when it comes to Norah and what she can and will do. I guess my doubt is sometimes in my own ability to facilitate some of those triumphs. I also have doubts in my ability to cope with everything with a smile. Sometimes I'm not sure if my smile is genuine. I absolutely love my life. It is beautiful and wonderful, and I wouldn't trade it for any other life. I have found fulfillment in ways I never could have imagined. But sometimes when I look ahead, it all seems so daunting. Yes, we've gotten this far - and what a challenging journey it has been. Again, I don't ever doubt that we'll meet our goals. I suppose, like most people, I just get a little tired.

Though she is a very smart girl (sometimes too smart for her own good), Norah is pretty behind developmentally. She turns three in a few weeks but she has yet to walk, stand, or even get to a sitting position on her own (though she's close). She is improving, but her expressive communication is lacking too. We recently made the decision to enroll Norah into preschool at the Jean Massieu School of the Deaf in Salt Lake City. Norah is hard of hearing. Though we have a Deaf Mentor (one of the most awesome people) who comes weekly to teach us American Sign Language, Norah will need even more exposure to ASL if we hope for her to be fluent. As for us, we're working on our fluency too. I truly believe that at JMS, Norah will be a "normal kid". I picture her at a typical school. She tires quickly, so would be lying down a lot. She would have minimal communication with the other kids. They would treat her like a baby, running figurative (and possibly literal) circles around her. She is not a baby, and I remind people of that often. At JMS, she'll be just any other kid there. Those kids are so accustomed to "different" that different = normal. She'll be ready to join Harper at our local elementary school someday, but that isn't just yet. Next month we have another appointment at Shriners to see how her scoliosis and c-spine (neck) stability are coming along. Cross your fingers for us, because her safety at school will be directly related to her neck stability.

Norah's formal list of goals on file is a long one. Will it be hard? Yes. Will we get there? Yes. Heck, I'm just thankful that we are facing these educational decisions and goals. It wasn't too long ago that we were facing different sorts of decisions - those that were necessary for her very survival. It's a welcome change of pace to be thinking about education and development instead of breathing and surviving.

Friday, June 27, 2014

Trach-free

I had this long, intense post written... when I accidentally deleted it. Yep, me - the person people turn to for computer help... I deleted the post and it auto-saved. Nice, huh? I just can't bring myself to re-write it. Perhaps you should be thankful that my other post was deleted... it was pretty long-winded (as I tend to be). But I wanted to break my blogging silence, at least for this one post. So where have I been? Enjoying life, of course. We've been living in the moment, and enjoying every bit of it.

The rumors are true that Norah was decannulated on June 4th. To say she's doing great would be an understatement. We're all adjusting to this new life. It's amazing what can happen in a year to such a strong-willed girl. She is strong, healthy, and enjoying her new trach-free life. We're all enjoying our new trach-free life. Norah is now in HD. She is more vibrant, active, vocal, mobile and just as sassy as ever.

The trach/vent mom in me will always be in there somewhere. But someday I'll forget the size and style of her trach. I'll forget her old vent settings. I'll forget the weight and juggle of equipment in my arms. I'm sure the first time I forget the oxygen tank (that is rarely, if ever used), Jeff, always the worrier, will be right behind me with it. And as we wean off of our private duty (night) nursing, I'm sure the trach/vent mom will be stirring within me, at the ready for any respiratory emergency.

Her medical journey is not over, but her rocky start is. She can finally breathe on her own. I can't even begin to express how thankful I am to all of you, to all of her caregivers, to technology, and to the love that has lifted her up and surrounded her since the moment she was born. Thank you for sharing in her journey... It isn't over yet.


Wednesday, January 15, 2014

Hibernating

I had been hoping it wouldn't come to this, but it looks like it has become necessary, if not critical. This flu season is becoming progressively aggressive, so we're going to have to make sure that everyone that comes in close contact with Norah, or even in our house, is up to date on their flu vaccine.

The truth is, I didn't get my first flu shot until I was pregnant with Norah. After her diagnosis, my doctors stressed that she could have respiratory issues (ha!), so we needed to make sure our family was protected. I have received the shot every year since, and so have Harper, Jeff, and Norah.

In our lives we are always weighing risk and benefit. Some people have allergies or sensitivities that result in a choice against the flu vaccine. (You can get a preservative-free version, though there are other allergens too.) Others may not fully understand what can happen if they get ill. I truly hope that everyone does research on both sides of the topic to make a fully educated decision on whether or not vaccination is right for them. A good place to start is the CDC's website. We understand that our family lives in this unique world where we are apt to hear more scary details about what the flu can do to otherwise healthy, youthful people (hospitalization, heart and lung ventilation, even death).

I just know that for my family, we need to increase our "herd immunity". Jeff and I have decided that, for our family, we cannot afford risks. I will not tell anyone that they should or shouldn't get the vaccine. I may tell them to consider it, but I will not tell anyone that they have to. However, our company will be contingent on it. Our family has had to live in separate places for far too long to have to take any unnecessary risk of having to live that way again. For those that do not vaccinate, we still hope to keep in touch via other means, and look forward to coming out of hibernation in April!

Tuesday, January 7, 2014

Two Hundred and Three Days

Norah has been home for 203 days. That's just shy of seven months. I have been distracted from blogging by our new life at home. I spend every day grateful for our life together as a family, at home. We have our routines, and that helps us manage the level of crazy. We were not quite so organized at first. Of course, we are still a work-in-progress, but what family isn't?

Most days, I still have moments when I am caught off guard by my emotions. I look around me, and see what I've been longing for. Just about every morning, Harper wakes his sister with his enduring volume of a 5-year old boy. I hush him, but secretly love the normalcy of it. Norah and I have quiet time together while Harper is at school for a few hours. Today, it made me sob. It is difficult to describe; my tears aren't quite tears of joy or sadness. As I type, I gaze down at my daughter. She's lying on the carpet while gravity feeds her through her gastric tube. She fidgets with her toes, enamored with the Princess and the Frog (one of her favorite movies). She has no voice with the trach, but her fingers dance with babble like so many other kids her age with a hearing loss tend to do. She's learned so much sign language in the last few months. I look at her in awe. In awe that she is really here. In awe that I don't have to miss her anymore.

I think of what we would all be doing this time last year. Norah would probably be getting her bath at the hospital, a mess after being fed by her speech therapist. Harper and I would be getting dressed, with me counting down the hours until it was time to go visit our girl. I think of my aching heart. I think of Harper hiding from the hospital employees. I think of cuddling and holding my girl tightly, trying to squeeze in every bit of affection I could in our time there each day. I think of Jeff's extra long days: commute, work, then time at the hospital. By the time we got home, it would be quite late. We'd be scrambling for dinner and to get Harper in bed at a decent hour.

In so many ways, our life now is more difficult. I don't get out much. Something as trivial as picking up Harper from school is a huge production with medical equipment. I have learned to juggle a ton in my arms and strapped to my shoulders. I have learned to trip over cords, tubes, and wires without falling down or pulling on Norah. I manage her equipment and supplies. I manage all sorts of mail such as people saying we owe them money to medical records and appointments. Yes it is hard. That is just the tip of the iceberg. All this is done while standing in Norah's doctor, nurse, CNA, medical transport, respiratory therapist, physical therapist, occupational therapist, and speech therapist. And of course all of these daily things are made much more manageable with the help and support of Jeff and some select friends and family members. You know who you are. :)

But the single thing that truly makes all of these things doable is the love and gratitude we have for finally being together under the same roof. This love makes it almost easy. I look back down at my girl, playing with the fabric on the couch with her feet now. She dances to the movie's music. She is so happy at home, and has come so far.

This post is a scrambled mess of thoughts, but I felt like I had to get it out while I had a spare moment. By the way... Our first round of holidays together at home was PERFECT. 

Thursday, November 21, 2013

Happy Miracle Birthday, Norah!

I interrupt this blogging hiatus to share my thoughts on the second anniversary of a very significant day.


My dearest Norah,

It has been exactly two years since that awful day. Your daddy describes it as both the worst and best day. He's right. We all stood together, teetering on the edge of life.

That day lives in my mind so clearly. Maybe it always will... Or perhaps it will fade a bit over time. But right now, I choose to recall it with clarity. It reminds me of where we came from, and all that we have. It reminds me that our love can do amazing things. The four of us are in this together, and we lend strength to one another without hesitation or sacrifice. 

These last two years have been amazing with you. I am so thankful that things happened the way that they did. If I had it to do all over again, I wouldn't change a thing. This is our story, and I love it. Thank you for being the bravest person I know, and certainly the strongest. You continue to amaze and inspire me. 

I love you.
Mama
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