In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey. Like the little purple pansy, he is tiny, but strong and brightens his corner of the world. If you'd like to see more pictures and his story from April 2010 to March 2011, go to Http://www.carepages.com/carepages/GiftfromHeaven
As I sit here on a Sunday morning, helicopter blades echo their "whomp-whomp" against the mountains. The house is sealed up as much as we can, and there is a sign on the front door asking visitors to please go around to the back.
These two pictures were taken at the same time: top one from my front lawn, bottom from my back yard.
Not opening the front door.
See, the mountain is burning. Yes, our mountain. Yes, again. Halfway between where it burned five years ago and three weeks ago. While we hope it won't be quite as bad as the first one, it's definitely more than the second. When I went into the garage this morning, I could smell the smoke in there, and outside it's more like when you're standing near the campfire, and the wind is blowing towards you. Yeah, not so good for already sick lungs.
We're not in California, we're in Utah, so while the fire is pretty close, (last night's nurse could see the glow of flames through the blinds) we're not in danger from the flames. But emergency asthma protocols are being implemented and this kid isn't leaving the house unless he has to. Sigh...
Playing with Dad at the reunion.
July has been a bit challenging so far. It's been good with family reunions and all, but we've also had a really nasty stomach bug rolling through the house, and Aaron has never been one to want to be left out of the fun. Fortunately, a stomach bug with a g-tube and nissen and diapers is much easier to deal with than it is with a typical child. It's just the rest of us have had it, too. No bueno.
Parades without scary noises are much more fun.
He did get to go out to the big parade on the 4th, and Daddy figured out how to stave off those awful noises that cause him so much trauma: noise cancelling headphones. And he kept them on! Score!!
He's also been to the water park and pretty much just had a great time wherever he's been. We head up to the hospital on Thursday evening for a slumber party (aka sleep study) to make sure his ventilator settings are where they should be.
Playing in his tent at the water park.
And that med we tried to stop? Yeah, "tried" would be the important word. It didn't work so well. I figured we'd know better by the weekend, and oh boy, did we. I ended up having to bag him a few times that Saturday and Sunday in addition to putting him on 12-15 liters more than once. So he's now back on it. We may try to change it out for another one, we may try one more time to take him off even slower than before. But for now, until he's had both his sleep study and his heart cath in a few weeks, we're leaving things just as they are. I need him to be status quo so that whatever the studies show, it's with him at his baseline, not with other systems messed up and playing with the numbers.
Fun times, huh? At least this kid keeps smiling, and reminds me to keep smiling, too. After all, isn't the joy what really matters?
“Very little is needed to make a happy life;
it is all within yourself, in your way of thinking.”
Yesterday marked seven years since Aaron came home from the NICU. Seven years. Had I been able to look forward to today, I don't think I would have believed it. But I remember how overwhelmingly grateful I was that he was able to come home, that we could bring him here, love him, make memories, feel his sweet spirit.
Trying to "help" the tech.
He had his "all you can eat" appointment the day after his birthday. Overall, the doctors are pleased with what is happening. We discussed some different strategies regarding his asthma, maybe using an antibiotic that has an anti-inflammatory component instead of a steroid the next time he has a flare-up in conjunction with a cold.
They've discontinued his acid reflux med. That one has me a bit concerned, but only a little bit. The thought is that since he's doing so much better on his blended diet, and he's bigger, maybe he won't need it. The med does a great job at reducing stomach acid, but not just in the stomach. It reduces the acidity of the whole body, including the lungs. Oh, yeah, those lungs. One of his two biggest challenges (the other being his heart). And a more acidic environment helps to deter those nasty bugs that love to live, grow and thrive, and make him sick.
Pool party at school!
This weekend should really show us if it will work. We cut his dose in half for two weeks and then stopped it on Wednesday. It usually takes three to four days after stopping for symptoms to really rev up. So far, so good. I'm not seeing anything different. So yea for better lung health, and yea for one less medication!!
He has his cancer screenings, which came back completely negative. We expected that, but still, when the radiologist came in to do a few of the pictures himself after seeing the initial ones, I was nervous. Aaron thought the slimey stuff was ticklish, and really wanted to help.
Stretching in the sun.
Aaron is going to summer school twice a week. For those who think that cuts to services really don't matter, can I just say, they do! Two years ago, in preschool, he got a six-week extended school year, three times a week. Last year it was twice a week for five weeks. This year it is only twice a week for four weeks. Eight days of summer school. ALL of Aaron's therapies, you know, the ones that strengthen his body, teach him how to sit up, roll over, etc, are provided through the school. So from the end of May until almost September, he'll get a grand total of SIX hours of ONE therapy (45 minute session, once a week), instead of 45 minutes two to three times a week, plus his other ones. We do what we can at home, but I'm kinda shooting in the dark. I don't have the skills and knowledge that his therapists do.
He also got a haircut. We're working really hard on helping him hear better, which means wearing his hearing aid. It's really cool! But if anything, including hair, is touching it, there's feedback noise. My poor silly monkey. He's really not too sure about those clippers. But true to his nature, he bounces back pretty quick. After a bath, he was "all better" and ready to play.
This next week will bring cousins, aunts and uncles, and grandmas and grandpa. Lots of family, lots of fun. Summer time: easy schedules, lazy days, late nights. Lots of memories.
Summer is like childhood. It is full of warm memories and gone too soon.
Tomorrow is Aaron's birthday. Tomorrow he is seven. Today he is six, tomorrow seven. It's kinda mind boggling. Yeah, I know that's what happens. We've done it eight times before with our kids. But this kid, this child, wasn't supposed to see seven. Heck, he wasn't supposed to see one!
And he's going to be seven. I waffled about doing a party for him. Birthday parties around here have usually been fairly low-key affairs. From about age four to the middle school years, we have a family gathering and a friends party. Most of them haven't wanted to do the friends party after that, so it kinda dies down.
Aaron, on the other hand, had the biggest party I think I've ever seen his first two years. As time has gone on, it's gotten smaller, but still... And then there's this year. I had just about decided that we'd just do a family one on Sunday, like we do for the other kids, and be done with it. But then, in the back of my mind was the niggling thought. "What if it's the last one?" "What if we don't get to celebrate eight with him here with us?" And I just couldn't do it.
So tomorrow, his birthday, the day he entered this earth life, we'll have another party. In comparison to his first few, it will be very low key. But I'll get him a cake, and we'd love to have people stop by. Come wish our miracle boy a happy birthday. It's a blessing that so many children don't get to experience, and we're grateful that we do.
He's still here, he's still growing, he's still facing challenges. We had a hearing appointment on Friday, a vision one today, and a comprehensive, all you can eat, multi-specialist one on Wednesday. There's so much to talk about at that one. We'll touch on his hearing results (moderately severe to severe without his hearing aid, none to mild with it), go over the eye results we get today. We'll talk about his nutrition, his breathing, oxygen use, frequent steroid use, and of course, the seizures I've seen. They'll weigh and measure my big boy, and we'll go over his many meds and get refills. We'll talk about repeating his annual cancer screenings, and I'll have a rock in my stomach until we get them done. It will be a long day. But that's okay, 'cause he's still here.
I put a g-tube and trach in one of his stuffed animals for his birthday present. He's not quite sure, but has fun poking his finger in the trach. Which is much better than putting his finger in his own trach!
His birthday is always a little bittersweet for me. I remember how blue he was when he was born. They told me to "look quick, Mom" as they held him over the drape that separated me from the c-section. And I recognized that he wasn't breathing, there was no sound coming from him, he was the wrong color. All I could do was smile through tears and wave at them to take him, help him, save him. They did, although it seemed like forever before someone said he was breathing. My children were all there, in the hospital. We didn't know if we got minutes, a few hours, or longer, and I didn't want them to miss out on seeing their little brother. I also remember a sweet friend whose own baby girl passed the day before Aaron's first birthday. And there's another little boy, not quite a year older than Aaron, who has moved on this weekend as well.
I love my son, I love all my kids. Sometimes I miss the me who took for granted that babies came home from the hospital with mom, and eight year old birthdays always followed seven year old birthdays. But I think with that new knowledge comes a desire to hold them just a bit closer, to cherish the memories, to try to capture the everyday moments that are so perfect in their imperfection.
So join us tomorrow if you can. Help us eat the cake so I don't try to do it all on my own. And hold your kids a little tighter.
The miracle of life is enough for me to believe in miracles.
Aaron made it home on Thursday. Between steroids, restarting his diuretic (don't get me started on that one), and simple Tincture of Time, he decided that breathing was an okay activity again. And because the one thing we know we don't know is how much time we get with this little man, we needed to make some more memories.
So on Friday, we loaded up the big van and took everyone who was available to the zoo for Dream Nights. We've been every year since Aaron was born and as always, it's a lot of fun. For one night, the zoo hosts families whose children are chronically ill or have special needs.
There's dinner, face painting, characters, animals (duh) and lots of other families who fight the same battles day in and day out.
Aaron had a great time! He was a giraffe this year. Andrew dubbed him "Jeff, the Jaff," and claimed "Puff, the Wuff" (he was a wolf) for himself. So he's been an orange tiger (twice), a dragon, a bear, a white tiger (I think) and then the giraffe. His first year I opted out of doing the face paint. Still too skittish.
Waving to the lions.
It was quite the feat getting ready to go though. This is an "off" month, meaning we don't have to do two of his inhaled meds, so that part was easier. He ate while we ate, and I gave him his meds, except the one I managed to forget in spite of all my planning. Then while we waited in line for face painting, we did his inhaled medications. All in all, I took up 12 different medications, 3 inhalers and 8 syringes pre-filled. Yep, and that's a simple three-hour trip. Gah...
That handsome Sousa player is mine.
Saturday morning brought a challenge. Joseph marches with the high school and had a parade. Who doesn't like a good hometown parade? Local businesses, schools, candy, fun times!
Except while I managed to keep him "with me" during the sirens, there was also a military vehicle that was shooting blanks in addition to it's siren. That was too much. Last year the noise scared him and he cried.
Waiting for the parade to start.
This year he seized. Seven minutes is a very, very, VERY long time to try to help your child. I knew that EMS was right around the corner, but while his heart rate shot up and his sats went down, they were still within manageable limits. And frankly, they would have transported him to the hospital, he would have been given some meds if he hadn't stopped by then, and they would have told us to follow up with his doctor. We've already got an appointment with Comprehensive Care in another ten days, so really, 911 wouldn't have made much difference at that point. (Although past ten minutes I would have enlisted help. He just squeaked by.)
My cute tree hugger.
Saturday evening we had another picnic just a few miles down the road. Michael thought the huge trees were incredible, and when we got home, Andrew decided to have some fun.
Aaron's big kids are just awesome! I tell people Aaron has big brothers because they run with the wheelchair. Mom doesn't even run without it. He thought the spinning was the best thing ever!
And I'll put this out there in part because I use this blog to document and keep track of things. Sunday night, Michael noticed that Aaron's pupils were uneven. When he drew my attention to it, yeah, it was pretty obvious. The right one was very small and non-reactive. The thought is that it was residual from the seizure, or he had another one that we missed. I'm afraid we're going to have to start chasing these things and try to figure them out. I really, really don't want to deal with seizure meds. There's not one out there that doesn't have ugly side effects. But seizures in and of themselves are awful. Just not something I want to think about.
And me? Well, I've been trying to play catch-up on everything I was going to get done before he landed in the hospital. I finally started making some onesies for Aaron. He's about a size 7 and those things start at about $18 each for that size! CRAZY! I made him the floppy hat he wore at the parade. The boys are creating their cowboy hats for trek coming up. We got some vegetables and flowers planted, and are hoping the deer are willing to share the harvest with us. I'm trying to get some kind of summer schedule put together for the kids here at home, and today I get to make an ice cream cake for Andrew, since he was supposed to have a birthday party last week, but yep, we were in the hospital. At least it's only a week late, right?
So we're living life, sometimes sprinting, sometimes stumbling, as best we can. A sweet friend put it so well when we were talking at the zoo. She's lost two children, and a third is on hospice and not doing great, but he was there. "If this is the last memory we get to make, at least it's a good one." And we'll keep on making memories as long as we can.
Memories are the treasures that we keep locked deep within the storehouse of our souls, to keep our hearts warm when we are lonely.
A couple weeks ago I got together with a bunch of other heart moms for dinner. And a painting activity. Talk about outside my comfort zone.
You should have seen her painting, the one we were supposed to recreate, more or less.
As we started painting, (and it was just the background) there were a lot of depreciating comments, and I recognized the mutterings around me echoed what I was feeling too.
No way I could make something like that. Even the background wasn't turning out like she had it, and we hadn't gotten to the "real" painting.
But I was feeling a bit dark myself, and rebellious, and maybe not in the best place for feeling down on myself, or letting my friends put themselves down either. So I said, "yeah, well, that's why she gets paid for this, and we don't. But I bet she doesn't know how to hear a heart murmur, or tell if a kid needs more oxygen, or what to do when they do."
And you know what? That's okay. It's good that she can do what she does, and it's okay that we don't. But our kids rely on us to do what we've been taught, and this was supposed to be a night of relaxation, or maybe discovery.
Her painting was a lot lighter than mine, but I wasn't feeling "light" at the time. I made the sky dark,almost foreboding. I was feeling it. But then my words came back to me. It wasn't all that way, and it wouldn't stay that way either, so I added in some lighter tones, just up in the corner, a bit of hope peeking through. And you know, as I painted it, I was already thinking, "If I did this again, I would do it this way instead of that." "I would make this line different, put that in a little bit of a different place." And maybe we do the same thing in our own lives. "I would say that different, I would go there instead, or maybe not go anywhere." And that's okay, too.
There wasn't a single painting that looked exactly like hers, or like any other one. But I can also say, I loved all of them. They were all somewhat similar, a tree on a foreground with hearts, tones of reds, blacks and whites. Kinda like all of us. All of us in the room were bound together by hearts, hearts that weren't "perfect." For some, it was our own heart, for many others, our kids. We're on a journey we couldn't have known about before, but we embrace it, the fears, the joys, the triumphs and the sorrows all the same.
In the end, although I saw things I might change, I was pleased with my efforts. And on the way home, I turned up my song loud, and sang it at the top of my lungs.
It's a work in progress, and so are we.
And Aaron, he's progressing, too. The only thing we can come up with is that the cold he caught just over a week ago exacerbated both his asthma and his pulmonary hypertension to the point we couldn't help him enough at home. We think we've turned the corner and are watching today. It's been concerning for both me and the staff here that he has stayed quite high on his oxygen around the clock, whether awake or asleep, and he's slept a lot. He's consistently needed 11-12, and sometimes a little more, liters of oxygen. But early this morning we were able to wean him down to four liters, something very doable at home. He bumped a little higher when he woke up, but he's still looking pretty good. So we're hopeful that the end of this stay might be in sight.
Unless I accept my faults I will most certainly doubt my virtues.
It's been a busy two weeks. Soccer games, last day of school, start of summer, you know, the good stuff. We've also dealt with asthma (a LOT!) and a cold. I've started in on some of the things that were put off while working, and maybe I'll get around to posting about them some time, or maybe not. Sorry, that's just kinda how life is going right now. I get these awesome (in my own mind) thoughts about posting and then it just doesn't quite make it out of the brain and into reality.
Cutest elephant in the jungle.
Anyway, here we are. And "here" is back in the Hotel on the Hill. NOT in my plans for this weekend, at all. I mentioned he'd caught a cold. We started seeing signs of it on Monday, but really, he weathered things pretty well. Thursday afternoon was rough, really rough, but again, we managed to make it through with lots of suctioning and albuterol, and a few bagging episodes. Thursday night was okay, and Friday was much better. So I figured we'd take a few extra precautions and heading out on Saturday would work.
Saying goodby to a beloved teacher who is retiring.
Initially, it did. William's mom had asked him to take flowers to various family member's graves in three different cemeteries. We started in mid-Salt Lake and then moved to the Salt Lake Cemetery with plans to continue on to Logan where his Dad's family plot is. He needed a little more oxygen after an hour or so, but nothing too out of the ordinary, so I didn't even give it a thought except to revise how soon we'd need to switch O2 tanks. I had plenty with us, so no problem.
But then we stopped for hot dogs before leaving Salt Lake. And Aaron must have looked out and realized how close we were to one of his favorite places. All of a sudden, he was in the 70's instead of high 80's. I did some interventions, and nothing. Did a few more with the same results. I switched him back to his ventilator in hopes of opening him up a bit. Um, yeah, try 60's instead of 70's. (Someone wasn't reading his script.)
View from Salt Lake City Cemetery
So I pulled out the bag and started bagging him. It still took about 15 minutes to get him back into the mid-80's. I told William he needed to drop us off at the hospital and continue without us. Andrew took over bagging while we drove, kinda like he did just over a year ago. He's a pretty awesome big brother.
Hanging in the ER.
Once we got here, they called a "red patient admit" again. Hate hearing that, and knowing that means they're rallying the forces 'cause he's in trouble. Glad they're all there, don't get me wrong, hate that they're needed urgently. It still took a while (probably only 15-20 minutes, but still) to get him stabilized. Did x-rays, ran labs, it looks like the rhino is still the culprit, although he's really not too symptomatic.
For a while last night, it looked like he might end up on the higher hospital vent with a percentage of oxygen flowing instead of the rate of oxygen that we use, but he did manage to avoid it. He had a pretty good night. In fact, the team is pretty certain it's time to send him to the floor. I'm very leary of that plan, and I've weighed in. They still want to move forward. I guess we'll see what happens, right?
Life keeps throwing me curve balls and I don't even own a bat.
One week apart, and yeah, the first one was earlier.
I've had so many thoughts about Mother's Day this past week, where to take this post, what to say.
My sweet husband orchestrated a very thoughtful lead-up to Mother's Day. Every day for the past 9 days (yep, nine kids, count 'em) I was given an envelope with a personal note from a child. Even my missionary in Canada sent one, and somehow I missed it coming through the door. Probably something to do with the craziness of my life lately that I missed the return address on a personal letter addressed to his dad.
I felt the love, and the reality. I even teased my 13 year old about his. He wrote a delightful poem in which he told me twice I was "the bomb." Now, I know that's used as a wonderful endorsement, but I did ask if that was because I was always "blowing up" lately. He grinned.
Anyway, back to life. I'm going to be real here. There's been some work going on in between my ears lately, hard work. And so much more to be done. It's been a rough week. Okay, a rough few months. Aaron is as happy as ever, but his body isn't quite as cooperative. I've been sick, a lot. I've missed out on so many things, sometimes because he's not stable, sometimes because I can't take the chance of passing along whatever the latest goo is that I've had. And it's hard. I miss being with people, I miss my friends. It's hard to tell my kids that yep, once again, something's not going to happen because we just can't take those chances with Aaron.
And then there's today. I got up and my nurse (fabulous nurse!) gave me report. He said we'd call it a "win" because we were still at home, and not in the hospital. Aaron slept all night last night, but he was still battling oxygen sats. When he's asleep is when we gain ground. Not last night. Nine to ten liters all night.
On Facebook, I found a sweet girl who lives down the road was LifeFlighted last night. Now, the paramedics in our area are all Advanced Life Saving certified, and they're all familiar with trachs and vents and such. They don't LifeFlight on a whim.
A woman at church who is battling her own set of challenges stopped me and laughed and talked about how God uses our situations to teach us patience. I think in my case, He knew he needed a 2x4 to hit me over the head with.
This thing we call life is HARD! Really hard!! And sometimes it hurts. Sometimes we feel left out, alone, abandoned, like no one else quite gets it. And frankly, they don't. But that's okay. And that's my new mantra, my new song, literally.
Piano Guys has a song, "It's Gonna Be Okay" that puts it all together. They don't paint a picture of roses and sunsets. It's real, it's raw. Yeah, "doubt is a broken record that plays inside my head," "So many times now I was supposed to tap out, all the walls would fall down around me." Reality.
BUT it's going to be okay, really. "No matter what [I've] been through, here [I] am ... no matter if [I] think [I'm] falling apart, It's gonna be okay." Yep, it is. Love the saying, "My track record for getting through bad days (weeks, months, years?) so far is 100%, and that's pretty good."
So I'll keep on working on those thought processes, work on remembering who I am, what I stand for, who I'm in this fight for. It's gonna be okay. And if you need help, too, listen to the song, turn the volume up high, and dance like no one is watching. (And if they are, maybe they'll dance, too.)
