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.
Aaron has turned around 180 degrees from where he was last Sunday night. He's back to his happy, playful, silly self.
In fact, I had to take him out of church today because he was singing soooo loud! Not a problem, except he started as the Sacrament hymn ended and then continued to serenade us all through the Sacrament. In fact, he might have been the loudest kid in there.
I don't think anyone else minded, and we were trying not to giggle. But I figured that if you're paying attention to the cute kid making noise, it's hard to focus on the Savior and renewing the covenants you've made with Him.
Today we also got to celebrate David.
He came home on Tuesday from his mission to Portland Oregon for The Church of Jesus Christ of Latter-day Saints (Mormons).
He spoke in church, and once again, I was overwhelmed with the depth and spirit that this wonderful young man has. I wonder when that happened, when the little boy who used to run around playing with Legos and Matchbox cars disappeared. But he has matured so well, sometimes in spite of me.
Aaron goes in tomorrow for his heart echo. It's the one he was supposed to have about ten days ago, but then he got sick. He's actually doing so much better than he was before.
I'm hoping and praying that the C.diff doesn't come back. In a lot of cases it does relapse. But for now, I'm living in the moment and enjoying some normalcy (whatever that is).
I'm tired tonight, but it's a good tired. We've worked hard around here and he's had friends who came to see him. Aaron is doing well, Mary is home, too. And tonight, all but one of my children will be under my roof.
Yes, I'm content, and that's a good way to be.
I don't think of all the misery but of the beauty that still remains. ~Anne Frank
It's been an interesting process inside my brain the last few days. (Okay, "interesting" may be the wrong word. Weird, preoccupied, totally obsessed might be better.)
I mentioned last week that Aaron wasn't feeling good. In fact, the poor boy has been downright miserable. He'd been on some antibiotics for his ear infection, but then diarrhea set in. And it wasn't quite what we expected from the meds, more like he was actually sick. But since there were others in the house that were also sick, we figured that's just the way things were.
Measures were taken to make sure he didn't get dehydrated, and we hunkered down to wait it out. Except, it was taking longer than I thought it should. And he became more and more miserable. I figured that was just what we had to deal with.
Then I was talking with Deborah Sunday afternoon and together we realized that hydration wasn't the only concern. He could also be losing too much bicarbonate, making his body too acidic. In other words, our bodies like a pH of 7.4, and a slide of much to either side is not a good thing. In fact, it's very, very bad.
I took the boys to church (Dad was also sick, but with a cough) and she stayed with Aaron. As I sat there, the topic was on personal revelation. I have to admit, I really didn't hear much. But as the speakers spoke about personal revelation, it's importance in our lives, I found myself more and more anxious about Aaron. In fact, at one point, I left the meeting to page our pediatrician, to see if I could run some things past him.
I wasn't able to reach our ped (my phone was acting up), but I did reach a hospitalist at Primary's.
See, here's what was bothering me. Aaron was sleeping almost all the time. As in, he'd wake up for a few minutes, and then go right back to sleep. No playing, and no smiles. In fact, he was becoming less and less responsive in any manner.
So I put him in the car and hauled him north. But then his labs came back not only good, but beautiful!! And he perked up a tiny bit. Not much, nothing like his normal (even sick) self. Even the RT remarked how this was totally out of his norm. So since we were there, they decided we should test for a lovely thing called "C.diff." (If you don't know what it is, and want to, you can click the link. But trust me, it's not fun.)
But the problem was, you have to have at least 5 ml of stool to test, which should have been a problem. Except it was. We waited over two hours for him to "go" but nope, not happening. So we brought the collection container home, and he obliged 20 minutes later.
I was pretty sure he was okay. In fact, by the time we got home, I was really wondering why I took him in. And if he'd acted Sunday like he did on Monday, I never would have taken him. No, he's not "all better," but he was more playful, more awake, and smiling, at least some of the time.
And I really began to wonder why I'd been so anxious. I don't think there's been a time that I was that anxious that there wasn't a problem. I mean, was I missing something? Had I just managed to work myself up over nothing? It sure looked like it.
I dutifully called the ped last night to see if the results were back, and they weren't. And then again this morning. Nothing, and so I began doubting myself even more.
And then the ped called back. He is positive for C.diff. Which brings another whole host of challenges. But I also knew why I was so anxious to get him up there. We think the whole thing actually started going bad on Saturday night. And if I hadn't gone on Sunday, I'd still be thinking we needed to just work through this.
And C.diff is not something to play around with. But now he's being treated, and hopefully, within a few days, we'll have our happy, playful, HEALTHY (please??) bug back.
And my testimony of personal revelation has been strengthened again. I may not have known why he needed to be seen, but Someone else did. And He was watching out for us.
“Experiences of prompting and prayer are not uncommon in the Church. They are part of the revelation our Heavenly Father has provided for us.”
Well, we think we know what it is. And even better, we're handling things at home!
It looks like the culprit is a tummy bug. The good news is that while others who've had it were kneeling at the porcelain throne, Aaron's is coming out the other end. (TMI? Sorry.)
His fever has broken and he's tolerating his feedings just fine. And our chunky monkey has some calories to spare (kinda like Mom) so he's in good shape there. We're just very grateful for an abundance of diapers, chux, and a fabulous washing machine right now.
We've started running Pedialyte between his feedings to help make up for the fluids he's losing, but he's holding his own. His oxygen has even remained stable through the whole thing, 4 1/2 liters, which is on the high side but totally doable!
He's still pretty lethargic, sleeping most of the time, and not moving much when he's awake. But that's okay. His little body needs the rest. Which he can get, 'cause he's at home, with no IV, no round the clock vitals, and no poking and prodding before he really wants to be awake. Well, not much anyway.
Funny the things you learn to be grateful for, huh?
All that we behold is full of blessings. ~William Wordsworth
P.S. Thanks to some very generous off-line donations, our GoFundMe account is half-way there. If you've got a little extra to spare to help us along the way, we'd be so grateful. Really looking forward to this summer!
Today didn't turn out exactly like I thought it would.
Aaron has been showing some signs of not being as stable as we'd like him to be. He's got an appointment with cardio at the end of May, but I put in a call on Monday to run things past them. Dr M. called on Tuesday and agreed that we should do some tests. He called in orders for labs and an echo.
We scheduled them for today, Thursday, and I arranged to take off of work.
Apparently, Aaron didn't want a field trip north after all. When I got up this morning, his nurse said his heart rate had been higher all night than it usually is. Not crazy, what's going on, high, but higher than we usually see when sleeping. I decided that with that, plus his antibiotic nasty diapers, plus leaving school early for his tests, he'd just skip school today.
Two of his brothers had orthodontic appointments, so I left him with his nurse and went on the way. She called shortly after we left and yep, he had a fever. Poor baby was just not happy. In fact, he really didn't move at all, just slept. He's woke a few times, played for a minute or two, and then gone back to sleep.
And we're waiting to see what he's got in store for us. No other symptoms yet, and his fever is still pretty low, just under 101.
So what do you do when your kid is on a bubble? You try to get as much done for the coming days as possible.
David comes home on Tuesday after serving an LDS mission for two years. We'll have a celebration with him on Tuesday, and then have friends over on Sunday after church. So I made cakes that we'll put in the freezer. (Still have no idea what else I'm serving.) I called the office and arranged to only have work that I can do at the hospital, in case we end up there. I made sure the laundry was not only washed but folded, bonus!
And I took his temperature and checked on him every 15 minutes or so.
See, it used to be that when my kids got sick, I'd try to figure out if they really need the pain meds, or if it just made them feel better enough to be cranky and not want to nap. We'd put on movies to lull their brains into hibernation. And we'd just hunker down.
Now, I try to find things to occupy my mind, when all the while its racing, reviewing the past few days, symptoms, where things started, what things meant in the past, and how long we can hold out. I make sure the hospital bag truly is packed (always is), and put plans in place in case we're leaving. And I watch, I watch carefully, 'cause while sometimes we weather things at home, more often than not, he needs more than my own little hospital room can deliver. And he can turn pretty fast.
Right now, he's hanging in there. We're only on 4 1/2 liters of oxygen, totally manageable at home. Fever hasn't come back and his respirations are okay. But that high heart rate and his lack of energy, even for smiling, that tells me he's not anywhere close to done, and probably hasn't even hit the peak yet.
Here's hoping we get to avoid the Hotel on the Hill. Which, by the way, is the most expensive hotel you'll ever check into. $65,000 for our last 8 day stay, yikes! And trust me, the amenities were a little less than you'd expect from a 5 star establishment.
Never a dull moment, although I wouldn't mind one from time to time.
Last week was Spring Break, and a welcome break it was. It's our last gasp before the race to the school year finish line. William (Dad) took the three older boys who are still at home on a scout service trip to the Hopi Reservation in Arizona, leaving me, Michael and Aaron at home.
I have to admit, it was kinda weird. We went from a house with eight (which already seemed a bit small) to a house of four. (And Deborah wasn't around much either. Totally stressed out with school and a ballroom concert. She did amazing!)
Anyway, for the most part, Spring Break was pretty quiet. I'd hoped to get together with a friend, but then her little girl got sick. We'd planned to go to Salt Lake to Temple Square on Monday, but Aaron was being pretty crazy with his oxygen (and playing with his pulse/ox, too, silly kid).
I put in a call to Primary's but they weren't too concerned, plus he had a visit coming up on Wednesday anyway. So on Tuesday, I decided to give it a try and get us out of the house.
I figured that if we went up to Temple Square and Aaron decided to be funky, we were almost all the way to Primary's anyway. We put extra oxygen tanks in the car, and away we went.
I'm so glad we did! It was a wonderful day, the flowers were so beautiful!! We finally saw Meet the Mormons. If you haven't seen it, I highly recommend it. Wonderful film and not at all "preachy." Although I have to admit, I didn't expect the Missionary Mom segment to hit me as hard as it did. I think it was the combination of her losing her second child and then years later sending her oldest off on a mission.
Michael wanted to do some indexing in the Family Search Center. (what eight-year-old wants to do that? He's pretty neat.)
I love this statue of a mother and her son. I am so grateful for the sons I've been blessed with. They are true inspirations to me, all of them. What lessons they've taught me.
We were able to spend about five hours up there before heading back home to try to beat rush hour. And Michael, who wasn't all that thrilled with the idea of going in the first place, didn't want to leave.
Wednesday, we had our "all-you-can-eat" appointment at Primary's where Aaron sees several specialists. Overall, the ones we saw were happy with where he is. But pulmo, ENT, and respiratory all wanted to know when we were seeing cardio again. He's had some stranger symptoms, or maybe not strange, but ones we haven't seen for a while.
I feel like I'm having to chose between his heart being happy, or his lungs. I mean, seriously, they're right next to each other, neighbors. Can't they get along??
Playing while waiting for his doctors.
So I've got a call into cardio now, and the nurse agreed that maybe he needs to be seen before our appointment the end of May.
See, he's been kinda weird on his oxygen. It's just very unstable. Sometimes he's awesome, down to 2-4 liters. But just as often he's sitting on 6-8. I've had to bag him a couple of times in the past few weeks. and he's not sick. He's also been sweating more, and more tired.
BUT through it all his heart rate has been amazing. So it's not like his heart itself is working harder. I'm stumped.
I also finally bit the bullet and called a number I've had for a year now. It was Intermountain Donor Services. I needed to find out if when Aaron does go Home, he could be a donor. That was a hard phone call to make. See, it wasn't hard to help our other kids sign up when they got their driver's licenses. It's honestly not a decision I ever truly expect to have to face. But we will with Aaron.
It turns out that Trisomy is not a reason to reject an organ or tissue, as long as it meets other criteria. So depending on how he decides to leave us, his kidneys will probably be able to be a gift, and maybe his liver. His lungs and heart are out, they're just too tattered already. But his heart valves can probably be used. That one really got me as I know so many women whose little ones struggle with exactly that.
NO, I didn't make the call because I think his time is coming. But I felt like that was information we needed to have well before the decision is made. But it did make me face reality for a little bit. And now, I'm putting it away, and not going to think about it again until I have to.
We had a couple more fun activities. Michael, Mary, and I went to see Deborah dance at BYU in the Ballroom Concert. So much fun! We also got to see the movie Home with HopeKids on Saturday. It was cute, fun message, but pretty weird, too. Michael liked it though.
Then on Sunday, Aaron got to go to church with us!! He's been grounded from church because of germs (and I have to say, there still seemed to be plenty there this week!) since last December. But after Easter, we try to take him back.
I went looking for some Sunday shoes for him, and couldn't find any that would fit him. Then I remembered, I've gotten rid of the Sunday shoes Michael outgrows. When you don't expect a child to live long enough to wear a size 5 shoe, there's no reason to keep them, and plenty of reasons to pass them on. So he got to wear his tennis shoes to church. This is a "problem" I'm so glad to have.
We're looking forward to his Kindergarten shots next month. Another milestone I never actually even considered. This little man blesses our lives so much. So grateful to have him here with us. And hoping for many, many more years...
When I was a little girl, my parents explained that in an effort to keep Easter more of a holy day, our Easter bunny would visit our home on Saturday, instead of Sunday. That way the Sabbath could be kept for the Savior.
As I grew up and had my own family, we continued this tradition, but somehow, I've felt a lack of focus on the true meaning of Easter.
I mean, if the reason we celebrate Christmas is because of Christ's birth, how much more important is his Atonement and Resurrection? Millions and millions have been born, but only one person lived a perfect life, paid for all our sins and pains, and then was resurrected.
And we do all kinds of activities during the Christmas season to remind us of Christ. It seemed a bit anticlimactic to only have one day for Easter.
Not to mention, I've become much more familiar with death and pain over the past five years than I expected to be. So many, many of my friends have empty arms. Just this weekend a young man with a combination of Trisomy 13 and 17 passed away. He was 22 years old. How much hope his family has given me. But they have a hope and a faith in Christ, and are clinging to that in their grief.
This year, I found a book called Celebrating a Christ-Centered Easter,and it was exactly what I was looking for. We spent this last week focusing on those in the Savior's life and their examples, and His example. And I felt the joy of Easter morning more than I think I ever have.
On Monday, we talked about Lazarus and the unexpected hope that comes even in the darkest moments of our lives. We planted wheat seeds and watered them, and waited for the green life to appear out of the darkness of the earth.
Tuesday, we made simple bracelets and talked about Simon, the Cyrenian, who helped the Savior by carrying the cross bar. He couldn't take away what was coming, but he helped make the burden lighter for a short time. The bracelet reminded us to look for a way to serve someone else, and to lighten their burdens.
On Wednesday, we talked about Joseph of Arimathea and Nicodemus, who had secretly been following Jesus, but at this time made their support public. They gave up much in the public eye for their testimonies. We wrote down our testimonies and scriptures about Jesus and placed them in eggs.
Thursday, we spoke of Mary Magdalene, Mary the Mother of Jesus, and Mary, the wife of Cleophus, her sister. Each of them had personal experiences with the Lord that helped create their testimonies. Mary stood by her Son, her sister supported her. Mary Magdalene was the first to see the resurrected Savior. We dyed eggs red to symbolize life (the egg) coming from death (the color red). I also like to place the egg on the temple as the temple covenants are what bind us together.
Friday, we discussed Thomas who reminded us that we need to cling to what we do know, and our belief in the Lord can carry us through our moments of doubt and bring comfort in this uncertain world. The lilies are sometimes called the "white robed apostle of hope." I think they look like the trumpet that will blow at the last day.
Saturday, we talked about the scriptures, and how when the Savior spoke of them when traveling with the disciples on the road to Emmaus, they recognized his teachings. And if we draw near to Him through the scriptures, we will know Him better and His Spirit will be with us.
This morning, Easter morning, we got up to view the sunrise. While waiting, we opened the eggs and read the testimonies inside. Because the miracle is, the tomb is empty. He lives. And because He lives, I will live again, too. He is my Savoir, my Defender, my Friend.
Easter Sunrise over our Mountains
In all of this, we did dye eggs for the Easter bunny to hide, and had a hunt. Aaron had a lot of fun with it. He's been battling an ear infection, so he's a little under the weather. But his smile is still so infectious. I'm so grateful for him, for all my children. What a blessing I have been given.
I'm tired tonight, but it's a good tired. We've worked hard around here and he's had friends who came to see him. Aaron is doing well, Mary is home, too. And tonight, all but one of my children will be under my roof. 
