In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
Last January our cardio surprised me with the idea that Aaron might possibly be a candidate for fixing his heart. Obviously it was not without risk, huge risk, but still, worth considering.
On Tuesday, hopes were pretty much dashed. Echos, or ultrasounds of the heart, are used to estimate pulmonary pressures. You know, the pressure between the heart and lungs. Aaron's single biggest challenge. While not exact, his echo looked pretty much like all his recent (meaning last few years) echos.
So then we looked back at his last heart cath from two years ago. That gives exact numbers. And those weren't great. In fact, as far as surgery options, they were downright bad. There are some numbers called "wedge" numbers. If they were to do a heart cath on most of us, ours would be about a 2. For surgery, they like them to be 5 or less. Aaron's were between 9.2 and 9.75. Yeah, not quite within range.
We will do another heart cath in July or August, but they don't expect the numbers to be optimal. At this point, I think I'll be happy if they're not worse.
Whadda ya mean, I can't "help"?
I don't know that we would have opted for surgery. You know, that whole "huge risk" and everything. Could he survive the first surgery? Could he handle the lower oxygen sats that it would cause? Could his lungs relax further so he could have the second? Could he survive that? You can see where this is going.
But on the other hand, fixing his VSD would allow him to someday possibly (probably) get rid of his oxygen tanks, and his ventilator. The freedom that would bring would be incredible! No longer would we have to measure outings by battery life and tank limits. I wouldn't have to carry an extra 25 pounds or so of equipment. He wouldn't have to be tethered to tubes (although he doesn't seem to mind them).
Having fun at brother's play, "Peter Pan."
Our own little "lost boy" who will
"never grow up."
In reality, not much has changed. We've been told for almost 7 years that surgery wasn't an option. I sometimes wonder if in the beginning it wasn't his heart as much as it was his T18 diagnosis. I think there was a time when it might have been a possibility. I know that in his lifetime, doctors at our hospital have argued for and won the case for surgery for others in similar situations. He's taught some wonderful medical professionals about the possibilities for joy and life and created some powerful advocates.
But the truth is, he won't be able to benefit himself.
Years ago, my father flew rescue aircraft with the Air Force in Alaska. Their squadron motto was "That others may live." I guess in a way, it might be Aaron's as well.
“I suppose it's like the ticking crocodile, isn't it?
Lately, it's become a "thing" to put up a Facebook post saying "What's the one thing you wish people knew about you?" It's not a bad idea, but as I actually pondered this one, I figured no one really wanted my to hijack their post, and they probably weren't looking for the things I was thinking.
Warning, this is one of those "therapy" type posts, and it's likely to be rough, maybe even a bit ugly. And no, I don't need an intervention. But sometimes, I think people look at our lives either as a jail sentence, or as if we're up on some kind of superhero pedestal. Frankly, neither is true. Mostly, special needs moms are just moms like any other mom. We do what we have to, learn what we need to, and fight like dragons to keep our children alive.
When we got Aaron's diagnosis, I had no clue how to do this special needs life. None at all. I was scared that he would die, and scared that he would live. The only "special needs" I'd done up to that point was more along the lines of honors and AP classes. I had no idea where to turn, what resources were out there.
And sometimes, I still feel like that unsure, timid mom. No, I don't wonder where to turn. I've figured that out. But it's more the things that come up. When he's alarming over and over, I worry that I've missed something, and even more, that I haven't missed something, and there's nothing that can be done.
People tell me I'm so confident, organized, energetic, "got it together." But a lot of the times, that's just not true. I worry, second guess myself. I worry about everything, seriously, EVERYTHING.
A look in my cupboards and closets will tell you that "organized" might cause laughter among those who live in my home.
And "got it together"? More like "fly by the seat of my pants."
I miss a lot of things. Lack of energy, lack of time, sometimes lack of motivation. Sometimes it's lonely. Really lonely. Other people really don't "get it," what it's like parenting a child like Aaron, and parenting typical children and their needs along side of an Aaron.
But then there are the really great parts, too, and the funny ones. Like when your kid can keep his cool and force air into his brother's lungs for 30 minutes, and can't figure out why anyone thinks it's something out of the ordinary. Or another one looks at the pulse/ox monitor and figures since he's feeling pretty good, the 86 must be his oxygen saturations. Had to break it to him that if his sats had been 86, no way the ER would have let him go home. That was his heart rate. His sats were 94.
So where is this all going? I guess it's just this. I'm a mom, just a mom. But a mom who's had to learn a whole lot more than she ever thought she would.
I speak medical fairly fluently, but I also speak heartache and joy. I employ more filters than I used to, maybe because I've been around those who haven't, and I've learned it hurts when people don't think before they speak.
Before Aaron was discharged from the NICU, we had to do a newborn CPR class, and I nearly lost it. I just couldn't imagine breathing for my child when he couldn't. Yeah, that was the part that broke me. But now, I do, his siblings and dad do, and my nurses all learn as well. And other than wondering how far it's going to go, how long we're going to have to do it, it doesn't bother me (much).
I've faced down and gone through thought processes I NEVER imagined I could. And I've come out broken, but stronger, for them. I was talking with someone about funerals etc today and they asked me how I knew so much about the ins and outs. I reminded him we'd been looking at one for seven years now. Doesn't mean it's easy, just means I've had time to become educated.
So I guess what I wish people knew was that I'm just me, sometimes overwhelmed, insecure and short-tempered. Sometimes all put together and relaxed. Not a superhero, not someone to be pitied. Just someone trying her best (most of the time) and hoping to leave the world a little better than she found it.
And if this has been too long (yeah, I tend to ramble, I know), just watch this brief video. But go all the way through. I can connect with so many of these scenes, somehow especially the one in the parking garage. But I also know the strength of wiping the tears, believing, and moving forward. Because as long as there's life, there's hope. And that may be the strongest medicine of all.
This week's been a rough one. Between the hospital (kid apparently had to get his Primary's fix) and working full time (since subs don't get paid time off) I've been run ragged. All the plans for the days leading up to Easter didn't get thrown out the window. They weren't even remembered to be able to be thrown out until it was too late. Yeah, the Easter bunny came, and we went to Easter Services this morning, but with all the hoopla and lead-up to Christmas, I feel like Easter needs a bit more focus. A bit more of Jesus, a bit more of reverence, a bit more of me. And it just didn't happen.
It seemed like all I could do just to keep moving forward, to keep suctioning, turning up (and down) the oxygen, keep on top (sorta) of kids doing their homework and other activities. It was hard, really hard. I felt I didn't measure up. I couldn't not only do it all, I could barely do any of it. And it hurt. I was just so, so tired and overwhelmed and exhausted (did I say that already?).
Anyway, so yesterday while we were putting together the Easter baskets and filling plastic eggs with jelly beans, we found some papers. Last year (or maybe the year before) we had taken some time during Easter week to write down our thoughts about Jesus and His sacrifice, and what He means to us.
I was reminded, it's okay. Perfection is not needed or even expected. My younger (and sometimes wiser) self wrote,
"He is my Savior and Lord, but even more, He is my friend. And I know that He wants me to be happy and be with him, so I will trust Him and follow Him and try to be like Him.
The scripture that I chose was Isaiah 61:3
"To appoint unto them that mourn in Zion, to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness; that they might be called the trees of righteousness, the planting of the Lord, that He might be glorified."
I don't have to do everything, be everything.
Does that mean everything was all of a sudden wonderful? Nope, I'm still very much human, and so are all the humans who inhabit my house, and the ones who come back. But I felt fed, given beauty, and exchanged my garment of heaviness for one of praise.
Aaron's doing well, as well as can be expected when he's still finishing a cold. But usually we spent 7-10 days in the hospital, at least. And from my calculations, we're just approaching the end. His oxygen fluctuates and the steroid side effects have been a bit rough. But he's back in school. He was part of a (quite funny) Easter egg hunt yesterday. And Daddy made him his very own Easter egg with his favorite color (red) and "I love Aaron" on it.
So grateful for Easter, for this season, for the empty tomb and all it represents. And grateful for my own renewal.
Thou hast turned for me my mourning into dancing: thou hast put off my sackcloth, and girded me with gladness; to the end that my glory may sing praise to thee, and not be silent. O Lord my God, I will give thanks unto thee for ever.
I know, imaginative title. Sorry. But writing on the phone is a lot harder than using a computer. Plus, I'm still working full time which kinda cuts into spare time.
Anyway, Aaron ended up in the PICU Sunday night. He got, can you guess? Yep, rhino, a cold. The question really isn't how did he catch it, but how did he manage to go so long without catching one.
The good news is that whether it's because it was more mild than usual, or because he's bigger and stronger, whatever the reason, he's handling it much better than usual.
He was on the hospital vent from Sunday night until this morning, so only about 36 hours, and we're probably heading out tomorrow morning.
Which will be awesome, because he's still a party animal at night, but I'm having to leave by 6 am to get to work each morning. This is what he was doing when I left this morning.
Notice how he's sideways? When we can't keep him upright, we know he's doing a lot better.
Here's what I came back to. Made me both smile and laugh.
Yep, looks pretty good. Love my bug. The greatest wealth is health.
UPDATE: I gave up and we're at Primary's being evaluated. We'll see what happens.
The title kinda says it.
Had we not escaped on Wednesday night, we'd still be there. In fact, the jury is out on whether or not he has to go back.
Thursday was rough. He probably spent more time on the bag, or being bagged, than he did on the ventilator. Friday was a little better. Yesterday was bad again, and today, well, let's just say it's not looking like a banner day.
I'm not sure what's going on. I've pulled out everything I can, vest treatments, albuterol every 2-3 hours, everything. His lungs sound better after a treatment than before, but somehow, he just can't keep his sats up. His heart rate and respiratory rate are high as well. But no fever, so that's good. I just can't figure it out.
Anyway, I sorta promised a look back at the pictures I put up for Trisomy month. And frankly, I don't think you really want to deal with the dark thoughts that I've been working through. No, he's not in danger, it's just the kinds of things that go through my mind whenever I cut his hair or put his monthly supplies away. And really, I don't want to dwell on those thoughts either. So here goes:
March 6When the doc wants to stick a camera down your throat and the techs poke you three times to get blood, you bring big brothers along as backup. March 7 I took a trip up to Shriners today to have my wheelchair looked at and came away with a nifty new sunshade. Also saw some friends up there having work done on their own chairs! Fun times!
March 8 Off to school. Another day of 1st grade. March 9 Spring is coming and with it comes outside recess and lots of sun. But Aaron's eyes are really light sensitive so he borrowed mama's hat today and can actually open his eyes outside.
March 10 Since I'm away all day, I'm sharing a video from his Valentine's dance this year. The ladies just love him.
March 11 Siblings, yeah, they're kinda crazy. But they keep each other grounded and rather than getting caught up in the "Trisomy" he's just their little brother. Plus, he never gets into their stuff.
March 12 Trisomy awareness. Could his smile be any sweeter?
March 13 It's March 13, Trisomy 13 day. T13 is also thought to be "incompatible with life." That cutie in the middle will tell you otherwise.
March 14 Aaron never figured out how to protect his airway when he eats, so he gets his food through a g-tube. This is what he gets in a day, essentially a smoothie where I can vary his protein, fruits and veggies, you know, like we do.
March 15 Poor baby had a really rough time yesterday afternoon. Asthma? Getting sick? Lower GI issues? Not sure, but I've got my phone on at work today.
March 16 Aaron has night nurses that care for him while we sleep. Staying awake can be a real challenge. One crochets to stay alert and one morning I found Yoda in Aaron's bed. He loves it! March 17 Symbolism. Green for the Irish, blue for Trisomy 18, and the butterfly for all the children called Home too soon. Who will wear blue with me tomorrow for Trisomy 18 Day tomorrow?
March 18, two pictures for Trisomy 18 day!
Wearing blue and rockin' that extra chromosome!
It's hard to see, but the Lone Peak Ultimate team is wearing light blue armbands for Trisomy 18. Plus a blue A on the disc!
March 19 You've got good days and bad days. Sometimes you're pulling out all the stops just to keep them here. Today is one of those. But it's so worth it.
March 20 He's home sick today, but had lots of fun last week at school. He even helped make the snacks! Yeah, the ones he won't let anywhere near his mouth. Silly boy.
March 21 Aaron thinks Primary Children's is an awesome place to vacation. Fortunately, it's been a while since he's taken "time off."
March 22 One of my favorites. There's something up his sleeve, but he's not saying what.
March 23 Trisomy awareness. Aaron gets his food though a button that goes directly into his stomach. Besides the medical advantages (no food in the lungs is kinda important) there are some other great benefits. He gets to sleep in longer and we don't have any two hour long I-won't-eat-a-bite-it's-yucky" meals. I may or may not have occasionally threatened my other kids with one...
March 24 Aaron had a great time last night at big brother's band concert. He loves music!
March 25 Hanging out in his stander, trying to decide if he should put his feet down or just let his big kids push him all around and not do any work. March 26 A few weeks ago Aaron used his communication book to say twice that he wanted to "play with Michael." Michael was sick at the time and staying away so Aaron wouldn't get sick. He missed his brother. This kid knows what's going on. We just have to find the way to unlock the communication.
March 27 Aaron provided the inspiration for Michael's science fair project- How weather patterns affect our breathing. They do! And now we're at the state level.
March 28 Late afternoon nap after working hard in school. Pictures of that tomorrow.
March 29 Aaron LOVES school. Learning to write his name, being with friends, reading books. What could be better? March 30 Learning about the weather and the sounds different letters make. You know, first grade. March 31 Fun at school! The worth of souls is great... Doctrine and Covenants 18:10
It was a bit questionable there for a little while.
In the past, Aaron has come out of surgery and just woke up. Oh, he opens his eyes, looks around, and decides that his naptime isn't quite over. But mostly, we can coax him out of it.
Yesterday, he wasn't playing. He just kept on snoozing, and at a fairly high rate of oxygen. When he eventually did (sorta) wake up, he still wanted a lot of oxygen, much more than I was capable of transporting him on. So we waited, and we talked, and threw around options.
Finally, almost four hours after he came out, I gave up and said we needed to start talking to the team on the floor about admission and called William to let him know we wouldn't make it home. He must have heard me and rethought his game plan, and he started doing a little better. Not much, but enough to have us guessing again.
We did finally get him down to where I could bring him home, and I gave him 15 minutes and ran for it. He did bounce a bit up and down, and I used the whole tank getting him home, but we did it! We slept in our own beds for what was left of the night. (Got here just before 1 a.m)
This morning he's still a bit wonky. I'm trying to decide if the goop I'm pulling out of his nose is surgery related as he heals, or the nasties his brothers have had. I'm leaning towards the surgery. When he had his adenoids out, we suctioned and suction for about a week as his body tried to heal.
So we'll hunker down, be grateful it's Spring Break so we don't have to go anywhere, and just relax. At least relax in between all his treatments, cares and meds. But that's okay. We're home.
Nothing reduces the odds against you like ignoring them. ~Robert Brault
They got Aaron in on a last case surgery for today. It should be easy peasy. It should be no big deal. I should be able to handle this. After all, I've certainly done it enough.
Yeah, and maybe that's the problem. I've done it enough. Oh, there are no more surprises in the pre-op area or waiting room. I know the drill, I know the rooms, the people, the set-up. I know that they're going to take him away, and I'll wait and wait. And time becomes really fluid. If I can focus on something else, it speeds up. And then I watch the clock and it crawls almost to a stop.
If I can't see you, you can't see me. Like his shirt? #Wasn'tMe
I know the speech: Heart kids, pulmonary hypertensive kids, they have more risks, it's harder, but they generally do well. We'll watch him close. His is pretty high, huh? Yep, pretty high. That's a good way to describe it. Pretty high.
So tired, thought he'd take a nap before surgery. Silly kid, he's going to get to sleep even more.
We're supposed to go home tonight. Surgery is supposed to be about an hour. There will be about ten stitches around his stoma in his neck, but they're dissolvable, and unlike the original surgery, if the trach comes out, or we have to change it in the next day or so, that's okay. But better to wait a week or two. Yeah, nothing too extreme, earth shattering. But still, it kinda feels like it.
Most of the time, honest, this trach life is no big deal. Really, we don't even really think about it. Even when there's a plug, we deal with it and go on. But this week, well, this week trach life has been really rough, at least in the space between my ears.
And he's off.
I've come to realize that there are things I couldn't imagine ever doing, that I know I WOULD do if I had to. I'll spare you the details, but if the trach came out, I would get one back in, no question, regardless of what had to happen. He would have an airway. He's my son, and I would do it. Not being sure that someone else would meant that I couldn't leave him, or let him leave, with a nurse.
But now that he's in, the trach, the airway, will be just fine. We'll have a secure airway again. Now it's his heart. Can his heart handle this? I'm actually fairly confident that it will, eventually. But will that awful pulmonary hypertension rear its ugly head? Will we end up with an extended stay? It's been a long time since we've been allowed to go home the same day of a surgery because of that ugly beast, but today we're hoping.
Yesterday with his brother at the Museum of Art.
So I'm sitting here, waiting, praying. There are others in here waiting, too. And we all hope, pray and wait together. Praying for surgeons, praying for our children, praying that it all works the way it's supposed to.
UPDATE:
The tech just came out to get his wheelchair with vent. It looks like they're done, although he's not awake yet. I'll be heading back to see him soon. That really was fast, which hopefully is a good sign. Less time than they expected, 40 minutes instead of an hour. A couple years ago it was an hour 20 instead of 15 minutes. I think I like this one better
"You never know how strong you are until being strong is the only choice you have."
