I choose peace...

One week from today, we will be handing our baby boy over for his 4th open-heart surgery. God willing, at this time next week, we will be breathing a sigh of relief, moving from anticipation into recovery. 

For some reason, crossing the one week out mark changes things. It feels so much more real now, so much closer to crunch time.

It would be so easy...

So easy to choose fear.

So easy to allow the anxiety to creep in, to take over. As I told Dusk today, I'm pretty sure my anxiety is so far off the charts it's found its way to someone else's chart!

So easy to fixate on everything that can go wrong, and that list, as any heart mom will tell you, is a mighty long one, my friends.

So easy to forget how far our miracle boy has come.

Just...so easy to dwell on the sadness and the fears...

But this week, instead, I will choose better...

I choose PEACE, the peace that surpasses all understanding.

I choose FAITH that my God, who knows the number of beautiful blonde hairs on my son's head and provides for the tiniest of sparrows, will meet my son's every need in that OR.

I choose TO STAND FIRM in the promises of my God, that He will sit beside Dusk and I in that waiting room, and will calm our anxious hearts.

I choose to CAST MY CARES at His feet and ask him to take my worries from me.

I choose JOY, to follow my son's lead and enjoy every minute we have together, living life to the fullest, praising God and thanking Him for his provision for our son for the past 4 years.

This week, I choose better. 

It's been a long time since we've had to do this, this trusting in God for the absolutely unthinkable (it's been almost 3 years since Bodie's last surgery). We're a little out of practice. Please be in prayer for our family this week, that Dusk and I can stay in the space of choosing peace and not fear.

Avoidance

Ahhhh....we are working hard at not thinking about Bodie's upcoming surgery. Between 3 (yes, 3!) of our good buddies Fontanning this week and 2 other heart friends getting transplants this week, avoidance has been tough. But we've been trying our hardest. I've been taking the kids out to my parents place in Palm Springs as much as I can, both to get some quality time in with them and to keep Bodie in isolation from germy places. 

We have been swimming nonstop. Sierra has turned into a total fish - I am LOVING watching the improvement in her swimming skills this summer! We've been working on learning to dive and improving her strokes.

And Bodie has definitely jumped in on the action:

(it's too bad these kids don't have a good quality of life, right?)

Bodie has been showing off his fashion sense

(for the record, he has on backwards underwear, under plaid cargo shorts, under backwards overalls)

 And we got a pre-surgery haircut (knowing he won't get a bath for awhile in the hospital, we didn't want to have to deal with the extra mop!)

 And the kids have been riding their bikes SO SO much! I am loving the quintessential summer pics...

And we've been loving on Gigi and Popo!

Please keep praying for us - some specific things to pray for now that we're 10 days out are...

1. Scheduling. 

CHLA is FULL right now. I mean, full. As in, kiddos are getting rescheduled left and right. Ok, maybe not left and right, but let me put it this way - we know of 3 kids this week alone who have had their surgeries postponed until later this summer. Something about a perfect storm of some unexpected babies needing surgery and other kids not getting of the CTICU as quickly as planned. Since Bodie is doing well and stable, we're getting pretty nervous that we could be next on the list to get bumped. Of course, we're grateful that Bodie is so stable, but having to reschedule at the last minute is not high on our list of things we'd like to do. My best friend is flying in from South Carolina and Grandma Jan and Popo Alan are driving out from Reno to help us out; rescheduling would obviously not be ideal. And, of course, this whole process is so emotional and it would be fantastic to not have to go through it more than once.

2. Rhythm issues. 

Bodie is in EAT pretty much all day every day. The poor kid is out of breath and winded all.the.time. It's so hard to watch. Most nights, he comes out of it, but not all. And many nights, his heartrate is totally erratic, alternating between fast and slow. It's been scaring the crap out of me, to be honest. His cardiologist thinks it's possibly just the result of his heart attempting to come out of EAT, but no one knows for sure. We've decided not to restart the Amiodarone (we'd love to avoid going back on it if possible). Instead, we'll just try to hold on until surgery and they'll attempt another ablation during the Fontan itself. It sure would be fantastic if he could just come out of the EAT and it could be a nonissue. Please be in prayer specifically for his EAT. 

3. Peace. 

We're 10 days out and trying really hard to just power through and not think about this. We know Bodie needs this. It will give him so much more energy to do the things he wants to do. The Fontan isn't a great solution, but frankly, it's our best solution right now, so we'll take it. But there are just so many things that can go wrong with open-heart surgery and the recovery is so tough on many of these kids. Lots to think about, ruminate on, freak the heck out over. So please just lift up our family in prayer. Pray for peace for Dusk and I, that we can get through this next week without too much anxiety.

I would ask for prayers for peace for Bodie and Sierra as well; but, to be frank, they apparently aren't having any problems finding peace these days.

How can I help?

So...I've been putting off writing this blogpost, because that would mean we're getting down to crunch time, that would mean this surgery is really happening in 17 days (but you know, who's counting?). But, I'm realizing we're getting close and people are wanting to help, so I wanted to let you know how you can best help us.

Pray, pray, pray.

Seriously. This is the #1 thing you can do for us. If you haven't talked to God in a while (or heck, ever), this is a GREAT time to start. And if you've been praying your whole life, why not take it up a step and pray with a group, add Bodie to a prayer list (or 2 or 10???), or fast so that you can focus on praying for Bodie?

Specific things we'll need prayer for include: 

(1) Bodie to remain healthy until the Fontan. 

(2) Bodie's EAT to get a little more under control so that it doesn't present any problems with the Fontan (he has been in EAT pretty much all day every day since we left for Tahoe - since his rates are low, no one is particularly worried or thinks it presents much of a risk from a surgical perspective, but as his mother, it makes me nervous - it would be super if it would go away on its own). 

(4) No unforeseen scheduling situations arise causing us to be bumped (one of our heart friends was on deck for his Fontan next week and just got rescheduled for late August due to critical babies needing the ICU space, so it can definitely happen). 

(5) That Bodie will have no major complications. 

(6) That Bodie will come back extubated and we'll be able to manage his post-op pain effectively. 

(7) That his body will adjust to the new circulation quickly, so that our hospital stay isn't too long. 

(8) That being in the hospital for an extended amount of time won't crush Bodie's silly and wonderful spirit. From what we've seen with our many other friends who've Fontanned lately, it's VERY common for kids to become withdrawn during the Fontan stay and pretty much "check out" emotionally. It breaks my heart to think of that happening to Bodie, but I know it's very likely. Please pray that he bounces back and we start seeing his smiles and silly personality return quickly. 

(9) For peace for Sierra, who is too young to really understand how critical this surgery is, and loves her brother SO SO much.

and 

(10) For peace, patience and strength for Dusk and I, as we sit bedside and try to support Bodie as best as we can. 

So yes, LOTS to pray for. We Covet prayer right now.

Give Blood.

Bodie will likely need blood product during or after surgery. We would love for that to come from directed donors (people we know personally). Because Bodie is A+, he is compatible with the four most common blood types (A+, A-, O+, O-). YOU CAN DONATE BLOOD IF YOU ARE EITHER A OR O. 

Platelets will also be an important part of Bodie's surgery. Platelets will help control the loss of blood which will ensure the surgery will go smoothly. The difference between giving blood and giving blood along with platelets is time. The whole process should take 1-2 hours. ANY BLOOD TYPE CAN DONATE PLATELETS.

Blood donations must be done at CHLA on July 24th, 25th or 26th. Donors must weigh more than 110lbs, not have left the country in the past year and not have gotten any tattoos or body piercings in the past year.  Some medications could disqualify a donor as well. Donors can not take pain relievers 48 hours before giving blood. No antibiotics 72 hours before giving blood. For platelets it is important to avoid any kind of aspirin.

To donate blood at CHLA (or to find out whether you are an eligible donor), call the blood center at 323-361-2370, and let them know you'd like to donate for Bodie's surgery on July 29th.

Even if you don't live locally (or can't make it to CHLA on the days specified, PLEASE give at your local Red Cross or Children's Hospital - there is always a shortage of blood and donors are desperately needed). 

Help us fill Bodie's Treasure Box

We will be creating a "Treasure Box" for Bodie with all sorts of little goodies for him to open whenever he has any sort of procedure (blood draw, gross meds, chest tube removal, dressing changes, etc. - all the non-fun stuff). We'd love to have some of Bodie's fans help us fill this box! I'm hoping to fill it with lots of Bodie's favorite things - small Veggie Tales items, matchbox cars, little puzzles, tiny balls, little trains, small paint sets, coloring books, etc. I'm also looking for anything that will make Bodie work on inflating his lungs (Fontan recovery is all about the body managing fluid and new circulation - so we'd appreciate anything good for getting those lungs moving to get that yucky fluid moving around and out of his body post-Fontan) - whistles, bubbles, musical instruments, etc. He also LOVES singing cards, so any kind of singing card would be AWESOME (and yes, I know they all seem to be Happy Birthday cards - that's totally cool, he won't know the difference)! 

For those of you who know Sierra, we'd love to include a few things for her as well, so that she doesn't get lost in the shuffle of Bodie having such critical surgery. Her favorite things are anything Disney princess or Fancy Nancy (especially books, coloring books, stamps, crafty things, etc.) - even just a card would mean so much to her!

If you'd like to contribute to Bodie's treasure box (or Sierra's items) and do not have our address, you can email me here at the blog and I'll give you an address to send items to. 

Bring us Meals

My best friend Val and Grandma Jan and Popo Alan will all be here the week of surgery to help us out and to help with Sierra, but after that, I can pretty much guarantee we'll have a meal sign-up. If you'd like to be included, please let me know and we'll make sure the email goes out to you! Life will be a little tough when Bodie comes home from the hospital, since he'll likely be fairly weak and needing extra attention, not to mention that we'll have to keep him away from large crowds for a couple of weeks - it won't be quite so easy for me to run out to go to the grocery store to get stuff for meals. And, if his admission ends up being prolonged, we'll need meals even more. So we'd LOVE the help, trust me! (And even if you don't cook, that's ok - we love takeout. ;-))

Visit Us

We've had a number of people ask me whether we'd like visitors in the hospital and the answer is absolutely YES. I don't plan on leaving Bodie's side (at least for the first week), so I'm sure I especially will welcome visitors - and, assuming Bodie is up for visitors (i.e. stable and not sedated), I'm sure visitors would do him wonders as well. So, if you'd like to visit us while we're inpatient and you haven't already told me, please make sure to let me know and I'll let you know when we're ready for visitors!

So, there you have it - PRAY, give blood, send goodies, buy us food and visit us! Or, you know, just PRAY. Either way, we'll be super grateful! 

Tahoe 2013...the one where we made lemonade from lemons

As I mentioned yesterday, our Tahoe trip was full of scary moments. But, like we always do, we tried to focus on the good and were able to have some pretty incredible family moments in between the scary ones! 

We spent lots of time snuggling and goofing off with Grandma Jan and Popo Alan

We ate ice cream at our favorite place in Tahoe - 3 times!

We balanced it out with some fruit - a proud mama moment for sure, when I ordered fruit with my breakfast and the kids were climbing all over me to get to it!

We celebrated the 4th of July and saw fireworks.

We played at the beach...a lot.

We were just SO darn cute!

We went to the Children's Museum. 

(and, for the record, whoever thought having a children's hospital room with medical supplies was a good idea, it's not. It's just not. Bodie was smart enough to steer clear of the room, but Sierra was in it most of the time - I had to overcome my urge to vomit everytime I walked in there to play with her!)

We played at the park.

Sierra had a special date with Daddy and Popo!

We capped off our vacation with a final bbq on the beach...

and by losing our 2nd tooth!!!

Whew! What a vacation! Although Dusk and I will pretty much remember it as a ridiculously scary and stressful vacation, we're super hopeful that these 2 littles will just remember it as another super fun family vacation!

One final pic on our way out of town, at the sign for the town Bodie was named after. My favorite part of the pic? Bodie is holding a postcard for the town of Bodie in his hand as well. :-)

Tahoe 2013...the one where Bodie pushed back

Our approach to parenting Bodie has always been "we push him until he pushes back." Last week, for the first time ever, Bodie pushed back. And it scared the crap out of us.

Tomorrow, we'll be making the long trek home from our annual family vacation to Tahoe. All is well. But it wasn't quite the super relaxing trip we had envisioned. 

I'm a big fan of spinning things in a positive light, but I have to say, although there were a lot of GREAT things about our Tahoe trip (which I'll post about in my next post), I'm also a big fan of getting the bad news out of the way first - so here it goes.

Tahoe was TOUGH this year. 

As in, the least relaxing, most stressful and most frightening vacation either Dusk or I can remember having ever taken. Let me tell you, taking a hypoplast thisready for the Fontan to altitude so close after an interventional cath is NO JOKE. To be honest, we're not sure why exactly Bodie struggled as much as he did - but struggle he did. We have lots of theories - (i) he's just too close to needing his Fontan for his hemodynamics to shrug off the altitude like he has in years past, (ii) he was likely anemic coming off the cath and his body hadn't replenished his iron levels yet, (iii) his good old pulmonary hypertension kicked in, (iv) his asthma kicked in, (v) he was coming down with a cold, (vi) his body didn't like sitting at heartrates almost double what they usually are (his heartrate was sitting almost continously in the 130's-140's during the day (confirmed EAT via holter) - not a dangerous level for a kid his age by any means, but definitely not what his body was used to), (vii) some combination of the above, or you know, (viii) he's a kid with half a heart used to sitting at sea level and we were asking him to be comfortable at 6,000ft+.  Who knows.

All we know is that he was struggling, particularly during the first half of our trip.

Struggling in the form of a consistently high heartrate, low sats, very poor coloring and finally decreased energy levels. Really low sats, as in sitting in the 50's coming over the pass and hanging in the low 60's when we first got up to Tahoe (yes, heart moms, you read that correctly - for reference, he's usually in the high 70s to mid 80's). After a mapped out route to the closest ER and a frantic call to Bodie's cardiologist, since Bodie's activity level was still surprisingly GREAT, we were given the greenlight to stay up there, increasing both his beta blocker and his pulmonary hypertension meds (he was on pretty low doses of both). That helped - although he was still blue and winded, his sats came up, his energy continued to be great and we were able to stay up in Tahoe...for 2 days. Until he woke up on Monday morning, not acting like himself. Was still playing, but not quite as much - and not eating much at all. When he woke up from his nap with sats in the low 60's and really lethargic (TOTALLY unlike Bodie), we made the decision to come back down to Reno (1,500ft or so less in elevation). 

I have to say, making that unplanned decision to quickly pack up and head down the hill was one of the scariest moments of parenting Bodie. I was worried we were headed for an ER trip (at a hospital we weren't familiar with, no less). I felt like we were back in interstage again (pre-Glenn, where the highest mortality level is for hlhsers). Even though we've always known having to leave Tahoe early was a possibility, it was also one of the most defeating moments. We work SO hard to make Bodie's life as normal as possible, so to have to completely adjust our vacation plans like that really hit home how fragile he is despite how strong he seems.

But the drop in altitude did him wonders. Within hours of getting down to Reno, he was acting like himself again. I didn't even realize until he started talking everyone's ear off at dinner that he had hardly talked all Monday morning up in Tahoe. It was definitely the right call to bring him down to Reno.

After that, we split our time more evenly between Reno and Tahoe - spending a day or day and a half at a time up in Tahoe and then heading back down to Reno. That definitely worked better for Bodie's body - it gave his body time to adjust. And we were able to have a great vacation in spite of the slight change in plans. 

After this trip, I honestly understand why some cardiologists simply don't let their single ventricle kiddos go to altitude pre-Fontan. It was SCARY. We don't regret going (Bodie had an awesome time, as did Sierra) - only that the whole vacation aged Dusk and I a good 10 years. Not exactly what we needed heading into the Fontan! ;-)

But, in spite of how frightening the experience was, we were able to have some good family time (more on that tomorrow) and have some good takeaways from the experience:

1. We continue to be SO incredibly grateful for a medical team that cares so deeply for Bodie. A cardiologist who put up with numerous phone calls and texts from me last week, and who was willing to adjust Bodie's meds on the fly so that we could still enjoy our family vacation. And an electrophysiologist who was making phone calls and sending emails out about the best way to manage Bodie's care at 6pm on July 3rd. I cannot express in words how impressed I am by his medical team, who continue to go above and beyond in their care. We are SO SO grateful for them!

2. We are also super grateful for Grandma Jan and Popo Alan, who thought they were getting us for a few nights - and unexpectedly got us for the better part of a week! And never complained about the kids running through the house, eating all their fruit and making messes everywhere! THANK YOU - we never could have done this trip without your loving flexibility!!!!

3. After watching our son struggle to breathe and keep up like we've never seen him before, we are READY for the Fontan and the new lease on life it promises. To the Fontan, we say bring it. 

Stay tuned tomorrow for some awesome pics from our vacation!