Healing a Hurting Marriage: Part 5. Getting Away from it all

(This is the last post in a series entitled Healing a Hurting Marriage. You can find the previous posts in this series at Part 1.The Backstory, Part 2. Her Story, Part 3. His Story and Part 4. Playing by the Rules.)

Dusk and I try to go on date nights. We really do. But we're not very good at it. I think we went on one date night the year after Sierra was born, and we came home after dinner (never even made it to the movie). I can't remember why we didn't make it to the movie, but I DO remember scaring the crap out of our babysitter, who came walking down the hallway after giving Sierra a bath to find us at the other end of the hallway (apparently, she hadn't heard us come in). We got a little better after that, but once Bodie was born, everything went out the window. I know we didn't go on any dates the first year of his life, and maybe did 2 or 3 the next year. The upside is, when you don't go on dates very often, it's easy to justify doing something expensive, like getting massages. :-) The downside is, it's hard to maintain the romance when you're getting away together so infrequently. We've really made an effort in the past 6 months or so to go on more date nights. 

When we were in Palm Springs with Dusk's brother and sister-in-law and their kids this past May, my sister-in-law Missy asked me if we had ever gotten away for the weekend. I think I just stared at her like a deer in the headlights. I honestly don't think the idea had ever occurred to us, particularly with a kid like Bodie. But she got me thinking - and really got our wheels turning. This was around the same time we had started counseling and talking about taking more time for ourselves and communicating more anyway. Missy offered to fly out and watch the kids for us, bless her heart. Ultimately, we ended up using one of our regular sitters, but we were SO grateful for her offer - and that she pushed us to do something we wouldn't have otherwise thought to do!

So, we did a little trial run in July - we left the kids alone with the grandparents and Dusk took me to the spa for my birthday. It was heavenly, to put it mildly. And the kids did great. So, a few days later, Grandma Jan came and picked up the kids in Tahoe and took them back to Reno with her - we got a whole date evening and night away from the kids, and met them the next morning. Again, they did great. So, we knew it was time!

Last weekend, we took our first official vacation alone together in over 5 years - to Solvang wine country. It was amazing. We did a wine tasting tour...where we did wine tasting...

and more wine tasting...

and I think some more, but to be honest, I can't recall much at that point! Haha!

We strolled the tiny streets of Solvang, ate traditional Danish pancakes and pastries, took naps, and relaxed in the pool at our hotel...

Then, we did more wine tasting. :-)

And we saw a super fun play in the outdoor amphitheatre under the stars (oh so amazing - anyone near Solvang, if you can catch a showing of Legally Blonde before it ends its run, DO SO! So awesome!). 

And then we ended our trip with a lunch stop at Cold Springs Tavern in the Cachuma Lake Canyon...

 (local Central Coast peeps, if you haven't made your way there yet, GO - think cold beer, awesome tri-tip sandwiches and onion rings, a beautiful rustic canyon, live music, dining on picnic tables and benches outside...and motorcycles as far as the eye can see! Super quirky, SUPER fun! A perfect end to an awesome vacation)

We were gone from the kiddos less than 60 hours. And of course we missed them (and the homecoming was pretty stellar, I have to say - I couldn't even get both feet over the threshold of our front door before Bodie had tackled me to the floor with hugs and kisses, followed closely behind by Sierra bear hugging me). But it was amazing to just be us. To be able to complete a conversation, heck, a sentence, without being interrupted. To have the time to have leisurely discussions about things, to not have anything to do but be with each other, to go into stores with nothing but breakable things...you get the picture. 

Marriage is hard work. Adding kids into the mix makes it even harder. But, the benefits are so worth it. So, to couples who find themselves in similar shoes to where Dusk and I found ourselves several months ago, I strongly encourage you to do what you need to to restore order to your marriage, to your family, to your lives. Seek counseling. Listen to one another. Understand how your love languages differ. Remind yourselves of that every day. 

If you are believers, seek counseling from a trusted Pastor - make sure the counseling is coming from a Biblical perspective. Put in the time to spend on your marriage. Pray over your marriage. Pray with your partner. 

I know that taking time away sounds impossible. But do it - I promise you, it is SO worth it, to reconnect with the one you married, who you promised to love in good times AND bad, in sickness AND in health. With a medically fragile child, you just hit the IN SICKNESS part a little sooner than you anticipated when you said those vows. I know it's not possible for all parents to get away, particularly if you still have a child in the hospital. Believe me, I get it. Bodie was in the hospital for almost 5 months straight (I realize that's less than a lot of kids, but it felt like an eternity); we never would have attempted to get away at that point in time. But hang in there. Things will settle down. And when they do, and you have time to reassess, think back to this post, and let me be a little nudge to go, to try and get away, just for a bit, and focus back on one another. It'll be worth it, I promise. :-)

Healing a Hurting Marriage: Part 4. Playing by the Rules

(If you missed last Sunday's post, Healing a Hurting Marriage: Part 1.The Backstory or the following posts Healing a Hurting Marriage: Part 2. Her Story and Healing a Hurting Marriage: Part 3. His Story, please read those entries first to get the context of this post.)

I have been totally smitten by this new "Family Rules" craze...signs like this

and this

Amazing, right? So, when we started counseling and opening up lines of communication that had been fairly well rusted through, I knew immediately a set of Family Rules was one thing we had to do. We came up with some family rules I wanted to share, because they've already helped us. I would say that they are definitely a work in progress. We're still working on finalizing them (I want less rules, Dusk wants to add "We do not bite anyone" (I'll give you guess who that rule is for!) and "We eat all of our dinner without complaining"; I want them to be rules we can grow with, etc., etc.). Once we have them finalized, we're going to have them put into a plaque like the ones above, and put it up in our house. I CAN'T WAIT!!!

In the meantime, here are our family rules...

Bennett House Rules

1. We speak in love.

2. We do not shout.

3. We do not lie.

4. We choose happiness.

5. We forgive.

6. We do not go to bed angry.

7. We pick up after ourselves.

8. We ALL chip in.

9. We do not whine.

10.    We respect one another.

11.    We speak kindly of others.

12.    We play nice and we play fair

13.    We are not overscheduled.

14.    We seek God constantly.

15.    We accept responsibility.

All because of JESUS.

We go over the rules with the kids on a regular basis (and Bodie can list off the first 2 rules from memory if you ask him, the little smarty-pants).

If you have not yet established family rules, I strongly encourage you to do so. There are clearly some rules more targeted to some members of our family (ahem, I'm the shouter and chronic overscheduler, Dusk is the one who doesn't always choose happiness, the kiddos whine, refuse to pick up after themselves, don't play nice and definitely don't play fair!), but there are many we all need to be held accountable for and I love that. 

I love that, when making a family decision about committing ourselves to yet one more activity we don't have time for, Dusk can look at me and say "wait, what about our family rule? Wouldn't this overcommit us?" and it seriously plays a role in our decision making. It's an explicit acknowledgment that I have a tendency to overschedule, but I don't handle the effects well, and the whole family gets stressed. Not good for our family.

I love that my children can call me out on it when I'm stressed and I start yelling. Like last week, when I came home from a 5:30am Bikram yoga lesson (all peacefully blissed out), to find that Bodie had gone poop on his little potty and tried to dump it into the big potty, but kinda missed and smeared poop all over their bathroom floor, and Sierra had pulled the super duper heavy drawer out from under the kids bunkbed and taken all the neatly organized blankets out, thrown them on the floor and put her dollies in "to have a campout" and her brother (whose underwearless bottom had not yet been wiped) was sitting in the middle of the drawer. And no one thought to ask Daddy (who was sleeping in the next room) for help. Oh wait, maybe I would have appreciated a free pass at yelling on that day...haha...

Anyway, it's a learning curve for sure for us and we're not perfect. But establishing family rules is such a great way to bond a family together and really work toward becoming a more cohesive unit. And setting the rules with your spouse is a great way to make sure you're openly communicating and on the same page about things. Here's to more accountability in all of our families!

The Big Guy and The Little Guy

Thank you so much for all of your prayers for both Nick and Hayden! Nick, the big guy, is doing well. His surgery went very well and, 2 days post-op, he is already in the step-down unit, eating well and working on walking around and moving more. Please continue to pray for a smooth recovery for Nick! 

Now for the little guy...

Hayden, sweet Hayden...I am so sad to say that Hayden earned his angel wings yesterday morning. My heart is so heavy for his mom, Ady, and his dad, and his 3-year old brother. So hard to understand how one man's mistake during a routine procedure cost this sweet fighter his life. So much anger and sadness. Please lift this family up in your prayers - for peace, for comfort, for love to envelop them. That they would lean on their faith, on God, to sustain them during this dark time.

Hayden Jeter Dorsett 
3/12/12- 8/16/12

Fly high sweet Hayden. We will never forget you.

Comrades-in-arms

First of all, I have to say I am totally humbled by the sheer volume of responses I've gotten on the Marriage series (which wasn't actually supposed to be a series to begin with, but what can I say? Sometimes, blog entries really sit on my heart and I have to share - I guess this was one of them). I guess I always knew in my head that Dusk and I couldn't possibly be alone in what we were going through, but I didn't realize how very NOT alone we actually were. So, thank you, to everyone who has emailed, Facebooked or posted comments on the blog - we so appreciate the support and knowing there are others we can help support and pray for as well. I have two more entries in the series that I'll post later this week or next, but I wanted to take a break for some very timely prayer requests.

I'd like to ask for prayer for 2 very special heart warriors tonight: little guy Hayden and big guy Nick.

Big Guy Nick

 Nick's dad, Mike, went to college with Dusk. We love Mike and Jeannette (Nick's mom / Mike's wife). We went to their wedding. They went to ours. So you could say our families go way back. But when we were BBQ'ing all those years ago, we would never have anticipated just how much our families would share. Their son, Nick, was born 10 years ago with Critical Aortic Stenosis and had 3 open heart surgeries by the time he was 22 months old. All of his surgeries have been done at CHLA, like Bodie. All of his surgeries have been done by Vaughn Starnes, just like Bodie. They were such a source of support and love for us as we battled through Bodie's diagnosis and surgeries (Jeannette even sat at the hospital with Bodie in my stead when I could not be there). Tonight, Nick is gearing up for his 4th open heart surgery tomorrow, a valve replacement surgery. Please pray for the surgeon, for the entire medical team who will be working with Nick, for strength for Nick and for peace for Mike and Jeannette and Nick's younger sister, Sabrinna. Tomorrow's a big day, but we know God is bigger. So please ask for his hand of protection over Nick for a smooth surgery and recovery. We love you Nick!!! You can follow Nick's journey here.

Little Guy Hayden

Hayden is 5 months old. He has HLHS like Bodie. He is post-Glenn, like Bodie. He had his Glenn 2 weeks ago and sailed through it. He was discharged home. He was readmitted 2 days ago, as planned, for a G-tube placement (a fairly minor surgery; barring complications he should have been discharged shortly thereafter). Sometime after the g-tube surgery, they realized he had fluid buildup in his lungs and placed a chest tube. During the chest tube placement, his left ventricle was punctured, leading to a cascade of complications, including needing an hour of CPR and being placed on ECMO (life support). Hayden needs your prayers very very badly. The latest scans have shown little brain function and his brain is truly in need of a miracle. I would ask you to please, stop what you are doing, and hit your knees to pray for this sweet boy and his family. Pray for tomorrow's MRI to reveal a drastic improvement. Yes, he needs a miracle. Luckily, we worship a God of miracles. Let's ask for one. You can follow Hayden's journey here.

Thank you, as always, our amazing prayer warriors!

Healing a Hurting Marriage: Part 3. His Story

(If you missed Sunday's post, Healing a Hurting Marriage: Part 1.The Backstory or yesterday's post Healing a Hurting Marriage: Part 2. Her Story, please read those entries first to get the context of this post - Dusk's celebratory post.)

After two years of “Bodie,” I am asked, what do I need to give my family credit for? This could be the hardest writing task ever assigned to me. Not that I have not had blessings heaped on me (and us) during this time, because we have, but so many blessings become obscured by so much heartache and turbulence. Through the fog I can think of a few things though.

I can give credit to Bodie who in his incompleteness has made our family whole. With his defects he brought strength and tenacity, a will to overcome adversity, even at our expense. In his stubbornness he has stared death in the face and said, “Bring it” while relying on us to be behind him completely and utterly dependent on God to back his words up.

I give credit to Sierra, my little baby girl who in this time has had to learn a very difficult role of being a big sister to Bodie. Bodie without a doubt happens to be one of the most difficult human beings I have ever had to contend with so Sierra, no doubt, has had to suffer Bodie as we all have. Sierra has had to live through so much anger, frustration, and chaos. She barely had time to get used to existing before being thrust into a maelstrom. Now she is a 5-year-old girl with the qualities of a leader in training.

I give credit to my wife, for having to agonize over manually pumping milk for Bodie for a year and then agonize more over trying to get him to actually drink it. I give credit to her for carrying the load of this family when I was at work trying to provide in the only way I knew how.  She earns heaps of pride for sitting by Bodie’s bedside when it appeared that it was over for him. She earns so much more for her efforts to be a wife and a mother to the rest of us even when it was clear her attention had to be divided, and she still managed to get a hot dinner in front of us every day of the week.

I give myself credit because while all this was unfolding I was able to build a studio and a storage shed in the backyard, paint the inside and outside of our home by hand, re-landscape and keep up the yard, polish the flooring twice, repair an infinite amount of house failures due to substandard non-American made product, and still work a full and part time job all while this chaos was unfolding.

Most importantly I credit our family because it is still together. Many families have walked the HLHS road before us and have seen their families end up broken or in divorce. It takes two very strong people to suffer the Lord’s testing to this extent. We bind together because we have no one else to bind ourselves to.

This time has proven to be a tempest because we have watched friends and families that once would have given us anything abandon us and those we never expected to provide support have become our rock. We remain strong because it is our will to be strong, even when faced with difficulty and spiritual warfare. We earn credit before ourselves only because any credit due was part of the Lord’s plan and the result of strength He provided to us to get to where we are today.

Healing a Hurting Marriage: Part 2. Her Story

(If you missed yesterday's post, Healing a Hurting Marriage: Part 1.The Backstory, please read that first to get the context of this post - Amy's celebratory post.)

My life has changed so much in the past 3 years. Well, since we lost the baby before Bodie, actually. But I’m so proud of our family for making it through.

I’m proud of myself. I have PTSD, a lot of it, actually. One of my fellow heart moms says it’s not “Post Traumatic Stress Disorder” with us, but rather “Persistent Traumatic Stress Disorder.” She’s totally right. I mean, you don’t witness your child almost die in front of your eyes 3 separate times and actually see another child in the room next to you die without it affecting your psyche, not to mention the scores of children I’ve seen lose this battle who I only knew tangentially. But it doesn’t show up like you’d expect. I don’t wake from my sleep in nightmares or have flashbacks. But it shows up with mad OCD. As in, every square inch of the kitchen counter must be clean every night before I go to bed…even if the cleaner is coming the next morning (yes, I’m serious). And I once laid into my mom for folding the laundry incorrectly (I actually unfolded and refolded every single piece of it when she was done - true story). I know why I did it – obviously, there is so little in this journey that I HAVE had control over that I have to take it where I can.  And I’m an emotional eater big time. So I guess I’m most proud that I’m not 800 pounds and huddled in a corner somewhere, with my PTSD taking over. Because I totally could be. But instead, I’m still clinging to my faith, and getting my kids fed and the house more or less clean on a regular basis, and laundry done and kids to school and various programs.  I guess I’m most proud of the normalcy I’ve been able to bring to my life in the face of everything we’ve been through. Oh, and the whole joining with my fellow heart moms to start a nonprofit to give back to newly diagnosed HLHS families. Talk about making lemons from lemonade.

I’m proud of Dusk. This journey has been especially hard on him because (I may have mentioned this) I am a control freak. I like things done MY.WAY. Oh, and I’m not very good at asking for help. I would prefer that he read my mind and step in and do it exactly the way I would have. And if he doesn’t somehow read my mind or, God forbid, does it the wrong way, I like to play the martyr role. I play it well. So I have not been an easy person to be on this journey with. I have pulled myself into this taking care of a sick child role 100,000% and only let him come along for some of the ride.  Oh, and he’s not always the most, shall we say, observant, when it comes to realizing that I need help. Are you sensing why this dynamic doesn’t always work? It’s a VERY challenging dynamic that can lead to a lot of resentment on both sides when you’re talking about a child in the hospital for 5 months straight. But you know what? He keeps trying. He’s STILL here, alongside me, trying to offer help the best way he can. I suppose some might call him a glutton for punishment – I just call him my amazing, God-loving husband. He loves his family and his commitment to us is breathtaking. Since he’s not a hospital guy, while I was at the hospital, he picked up the single-parent role with Sierra. I mean, I got to come home and eat dinner with her most days, but he did the nitty-gritty day to day trying to keep her together stuff. It wasn’t easy, but he did it, with an immense amount of love and compassion for her and how hard the experience was for her.  I truly believe a large part of why she made it through this as well as she has is because of how he parented her.

Which brings me to Sierra. Oh, our sweet Sierra. I am SO proud of her. Her entire world got turned upside down and she just powered through. Sure we had our temper tantrums, but I don’t know how much of that would have been there anyway simply as standard toddler stuff. But she has come through on the other side, a super compassionate and empathetic girl.  Anytime Bodie has a medical issue, she wants to know what’s going on and provide her input into how she thinks we can fix it (ok, this trait gets more than a little annoying, but it’s really sweet and comes from such a place of love and concern). She is well-adjusted, thriving, loves Jesus and loves her friends and family. She has such a zest for life and her excitement is contagious. It is stunning that she is so well-adjusted considering everything she went through the first year of Bodie’s life.

I am proud of our entire family unit. 2 and ½ years after a devastating diagnosis, the birth of a medically fragile child, 5 months of being split up between hospital and home, 3 open-heart surgeries, 2 pacemaker placements, 2 cardiac catheterizations, leaving our church home of over 8 years and church shopping for another year, and a whole lot of other crazy stuff later, and we’re still here.  We’re slowly getting plugged into a new church, we’re working through the aftermath of the crazy stuff, we’re developing family rules, we’re still all in one piece (more or less) and WE STILL LOVE JESUS AND EACH OTHER.  How’s that for a celebration?

Editor's Note: Anyone who has read "The Five Love Languages" or a similar book will get a kick out of the vast difference between HER perspective and what SHE celebrates vs. HIS perspective and what HE celebrates (coming tomorrow!). Just doing this exercise was a total eye opener for us and really started some great discussions for us!

Healing a Hurting Marriage: Part 1. The Backstory

Having a medically fragile child, particularly with a diagnosis like Hypoplastic Left Heart Syndrome, involving multiple open heart surgeries, can put an unbelievable amount of stress on a marriage. Before your diagnosis, it’s like your life is a nice tiny little ball of neatness (for the most part). Then, you get your diagnosis and the ball gets thrown in the air and completely explodes. Then, until your baby is born and for the first 6 months to a year of your child’s life (sometimes longer, depending on your child’s complications), you’re trying like mad to keep the pieces in the air as much as you can. You’re trying to keep things from hitting the ground. And you’re so busy trying to keep the important pieces (you know, keeping your kid alive) up in the air, you’re pretty much ignoring the unimportant ones. You’re making spur of the moment decisions on what’s unimportant enough to hit the ground.

Then, once things settle down,  and you’re far enough past the Glenn that the surgical experience starts to fade and the Fontan seems light years away, you finally have some time to look around and examine all of the pieces of your formerly tidy little ball of a life. Some pieces are bent, some are broken, some are just flat out missing. Where’d they go? God only knows – you were too busy juggling the other pieces to notice. And you try to scoop everything up into that tidy little ball again, desperate for order amidst the chaos.  This is what I lovingly refer to as “post-Glenn Fallout” period.

You have to spend time getting to know this new life, this new “normal.” Maybe you allow yourself to process the grief – maybe you don’t. After all, your child is thriving, so what right do you have to feel any sense of grief? In so many ways, this life is SO MUCH better than the life you had expected. But it’s still different. And you can’t ignore the ways it’s different. And, as tempting as it is, you can’t ignore its effect on your marriage or relationship.

When we were first diagnosed, we met another family whose little boy was gearing up for his Fontan. They were such a loving family – the mom and dad were both so supportive of their sweet little boy. But my mom told me later that the dad pulled her aside and said his biggest advice was NOT to ignore our marriage during that first year of our baby’s life, that it could have devastating consequences, that that was his one big regret. His son survived the Fontan with flying colors. Their marriage did not. And they are just one story. So many, many families have similar stories to tell.

So, when we realized that we were allowing ourselves to drift complacently through this “Post-Glenn Fallout” period, and we were pulling apart instead of together, remembering that family, and so many others like them, we sought out a pastoral counselor, a trusted and loving confidant who knew us, and our family.  Someone who could help us navigate through this next stage in life, and pull back together into a cohesive unit.

It has been amazing. One of the best decisions we’ve made. We’re already making such good progress – toward one another, for the first time in years, instead of away. What a wonderful relief.

One of the first “assignments” from him was to write Bodie’s story. We looked at one another and said “sure, we have his medical history already written up.” He stopped us and said “No, I don’t want BODIE’S story. I want to hear how Bodie’s story has affected AMY. And how Bodie’s story has affected DUSK.” Interesting. He also asked us to write about what we’ve learned and about our celebrations and accomplishments. We talked a lot about celebrating milestones. And I realized that although we have been very good at celebrating how far BODIE has come in this journey, we have NOT been very good at celebrating how far the REST OF US have come – Dusk, me, Sierra, our marriage, and our family.

We protested a bit – it feels weird to celebrate how far we’ve come when we still have so far to go. Wouldn’t we be somehow jinxing things?  But he gently reminded me that, much like soldiers at war, just because we know we have another tour of duty coming up does NOT mean we don’t celebrate each homecoming from a tour. So, in the next few blogposts, I will be sharing both Dusk and my writings of celebration, and our trip this last weekend, our first weekend away together since before Sierra was born!

Livin the summer life

I have been meaning to update on Dusk's hip condition, but honestly, time has completely gotten away from me. We have been SO busy in the past few weeks...

Fostering a rescue puppy...

(more on this later, I promise - but yes, we are only fostering - she is SUCH a good puppy, but she's a puppy - and we (especially Bodie, who can't seem to learn to play gently no matter how hard he tries) just aren't quite ready for a puppy right now)

Organizing our house (more on this one later as well - we now have working chore charts and a "command central" in our kitchen - and I am LOVING being more organized!) and getting more answers on Dusk's hip issue (more on this one as well, as he has his surgical consult tomorrow) and just enjoying the summer.

Today, I took the kids to the fair (by myself - a pretty scary endeavor with a kiddo like Bodie! haha). Oh.My.Goodness. I am SO SO SO SO glad we went - the kids had SO MUCH fun! So much, in fact, that we're planning on going back next Thursday! Here's a few pics of our awesome day!

All set to enjoy the day! 

 (And yes, I intentionally dress my kids in the same colors for events like this, so I can easily spot them when they run away from me!)

Enjoying what else, but awesome fair food!!!

Seeing animals, and getting into the petting zoo! For the first time, Sierra was totally into it, which was really fun to see (usually, she's more timid around animals)...

 And of course, Bodie got in on the action...

 

Is this not the sweetest expression ever?!?

 (This was taken about 30 seconds before I looked down to see him silently screaming. It took me a few minutes to get out of him that the goat he had been feeding bit his finger. Poor kiddo. When I told the fair employee about it (it wasn't a big deal, but I needed to know where to get a bandaid), her response was that the goat couldn't have bit him since goats don't have top teeth. I looked at her and said "well, I don't know what to tell you, but one minute, he was feeding a goat, and the next, he's screaming and his finger is bleeding." Go figure. ;-) Happy to say that he recovered quickly once I put a bandaid on it - but really, only Bodie would get bit in a petting zoo. Haha!)

We "rode" the piggy...

 And we stopped for ice cream...(I mean seriously, does this pic scream summer or what???)

Boy, we've come a long way since their time at the fair last summer, right?!? 

Happy rest of the summer from the Bennetts! :-)

And in an instant...everything changes

Dusk's mom died in a car accident when he was 9 years old. My mother has faced cancer 3 different times. We've had 5 miscarriages and a Down Syndrome Diagnosis. And then there was Bodie.

You'd think we'd be used to it by now. Used to a stranger, walking in and uttering a sentence that alters the course of your life. You'd think we'd never get too settled by this point, knowing our seemingly even-keeled existence could change at any point. But, no. It catches you off guard every.single.time. The world shifts ever so slightly, and the way you thought things were...just isn't.

Dusk has been battling hip pain for months now, ever since his pacemaker/ICD implant in February. Some thought it might be related to the ICD, that his chest cavity (which also still hurts) was too tight and pulling his hip out of joint. So his doctor did an x-ray 3 months ago (all looked fine) and referred him to an Orthopedist. It took us 2 months to see him. He decided that we should start with Physical Therapy and referred us out. Dusk saw a Physical Therapist for a month, doing all of the stretches they recommended...and the pain got worse. It has become excruciating. There are days it hurts just getting out of bed. He called his Orthopedist and (only after threatening to leave the medical group) were they able to move schedules around to get him in before 2013 (I only exaggerate slightly). He had scans done last Friday and met with his doctor Monday morning.

Left Hip Necrosis. Recommended total hip transplant.

At 39 years old.

Yes, we're reeling. Not what we expected to hear. Of course we're grateful for a diagnosis and not to just keep getting passed between doctors. And we're grateful it's something that can be "fixed". But we're worried. We're worried because his hip looked fine 3 months ago and now has massive necrosis. Even the doctor was surprised at the rapid change. We're worried because his other hip has started hurting in the same way. Monday, the right hip looked fine. But so did his left hip 3 months ago. We're worried because his medical team at UCLA doesn't communicate with one another, and he gets passed from doctor to doctor without any real cohesiveness or a holistic approach to his health. We're worried about what a hip replacement entails, the surgery, the recovery. More than that, we're worried that something else far more serious is going on, and the doctors are going to let it progress while they "sit and wait."

So that is the plan. We sit and wait and watch it for the next 3 weeks and then just "see what happens". Sometimes, very very rarely, it can get better. But it's unlikely. Necrosis like this is typically seen from either excessive alcohol use or significant steroid use, or occasionally by a fracture that doesn't heal properly. Now, for those of you who know Dusk, he does brew his own (mighty fine, by all accounts) beer and drinks his fair share. But he was very open with his doctor about exactly how much he drinks and his doctor was equally open that his alcohol use is nowhere near the levels required to produce this kind of result, that "excessive" alcohol use is typically referring to the levels seen in an alcoholic, which Dusk most certainly is not.

His doctor is assuming his necrosis is cause by steroid use. Last October, Dusk was diagnosed with Meniere's Disease, a rare inner ear imbalance that can be treated either by steroids or dieuretics. The ENT he was seeing at UCLA wanted to try steroids first, believing Dusk would be more responsive to it. He was responsive, but after 2 weeks of Prednisone, they had to stop it because it caused such massive hip pain. The general consensus was that there was no way it could cause hip necrosis that quickly, but that clearly he was very sensitive to it, so it wasn't a good idea. He obtained a second opinion from the House Ear Clinic, they recommended diuretics, which he started. Within weeks, the disease was under control and has been since. In any case, it seems to be his opinion that the steroids are currently the most likely suspect for what we're now seeing with Dusk's hip.

The final theory, a fracture that didn't heal properly, might also be coming into play. Apparently, there was a fracture in the hip. Although Dusk doesn't remember fracturing his hip, he does recall a particularly painful day golfing that might have been when it occurred. As an aside, anyone who has watched Dusk golf would totally believe he needs a hip replacement because of his golf swing!

The orthopedist (who was not his regular doc - he was on vacation) was very short and to the point - next step is hip replacement. We're not entirely comfortable with this as it happened very quickly, and there are other options which he didn't even discuss with Dusk. So we are in the process of obtaining a second consult from within the UCLA Medical Group (which Dusk is a part of) as well as a second opinion from outside the medical group. Additionally, due to how quickly this progressed and all of the open questions and concerns, he'll be seeing his regular Orthopedist, who is now back from vacation, Monday morning.

So, as we face yet another challenge, we're asking for prayers for our family. Prayers for Dusk's body, that it would miraculously heal. Prayers that a second opinion would guide us to a doctor that might have a better solution. Prayers for a more holistic approach to Dusk's care, that we might find that at UCLA (or, that somehow another medical group might take him - UCLA will release him, but Cedars (where we hoped to go) won't take him mid-course of treatment; we'll have to wait until the next plan year, which begins in January). Prayers that he would stop being pulled from one doctor to another, waiting months between appointments. Prayers for significantly diminished pain for him. Prayers that this is not simply a sign of something much more serious underneath. Please blanket our family in prayers.

And, if you have a recommendation for an Orthopedist within the UCLA group that you like, who is open to more holistic treatments, please send their information our way. Also anyone outside of UCLA who you might recommend for a second opinion. Thank you so much!

Freedom!

When Bodie first came home from the hospital, he came home on 6 different medications. By the time he came home from his unplanned pacemaker surgery 4 weeks later, the med count had increased to 8 (Aspirin, Digoxin, Enalapril, Hydrocodone, Lasix, Propranolol, Reglan and Sildenafil), given multiple times a day, for a total of 17 syringes. Because of his paralyzed vocal cord, every single one of those syringes had to be thickened. That means I had to draw up each dose, shoot it into a little medicine cup, mix it with a little bit of thickener and then draw the mixture back up into the syringe. It was one of the many reasons interstage was so overwhelming for me.

I'm going to let you in on a little secret - Bodie is just a touch impatient. As in "I am totally not willing to wait for you to heat that bottle up, so just give it to me cold" impatient. And "I'm going to scream so loudly and persistently that you won't be able to concentrate on a single other thing until you give me what I want" impatient. So, faced with a kiddo who was so demanding and medicines and bottles that had to be very precisely drawn up and calculated, I came up with a system very quickly.

Every night, once the kids were in bed and the house was quiet, I would pump and then prep the next 24 hours worth of bottles and meds. I would put pumped breastmilk, the requisite amount of formula (to fortify for extra calories) and the requisite amount of thickener (all determined by a pretty complex formula calculated by someone who understands this stuff waaaaay better than me!) into the blender and let it go. When it was fully mixed, I'd pour it into a large lidded jar in the fridge and then bottle off whatever I needed throughout the day. That way, when Bodie was hungry, it would literally take me 5 seconds to go to the fridge, pour a bottle and feed him. Saved me MUCH frustration and listening to him scream.

I took the same approach with his meds. I would take all 8 bottles of meds and 17 syringes, a medicine cup and a few packets of thickener. I'd sit at our little round table in front of the tv, catching up on my shows and mixing meds. Once they were prepped, the syringes were labeled and put in either a divider in the fridge or on the counter (depending on whether they were room temperature or fridge meds). The entire process took about 30 minutes a night. Then, the next day, when it was time to give meds, it was as simple as grabbing a prepped syringe and popping it in his mouth. It was super easy to look and see whether a particular med had been given (you'd be amazed how hard it is to remember anything at that stage in the game) and I wasn't having to worry about human error caused by prepping meds with 2 kids needing your attention at the same time.

Over the past 2 years, we've slowly worked our way down on those meds, both on the frequency and the dosages. It got a little easier as we slowly dropped meds off the schedule entirely. It got a lot easier once we were able to lose the thickener. By the time we got to this summer, we were down to meds only 3x a day -

Breakfast:

1/2 Baby Aspirin + 1 syringe (Enalapril/Sildenafil/Propranalol mixed together)

After nap: 

1 syringe (Sildenafil/Propranalol)

Late night:

 1 syringe (Enalapril/Sildenafil/Propranolol with a 1/2 a crushed Amiodarone tablet mixed in)  

Although the med count is much lower and I could probably prep and dispense meds on the fly, I never got out of the habit of prepping them at night. I still prep them once the kids are down - it takes me a few minutes now, but it's still an ingrained part of my evening routine. And then I always give Bodie his last syringe right before I go to bed. I give it as a "dream feed" - without even waking up, he sucks it right down. Most nights, I can also sneak a toothbrush in to try and get the sugary meds off of his teeth!

I'll be honest, this is still a hefty load of meds for your typical hypoplast - most that I know are only on Enalapril and aspirin at this stage in the game, and maybe a reflux med. But we all know Bodie likes to be challenging. :-)

So why I am I giving you this really detailed history? Because today was a BIG BIG day for us. And you can't understand how big until you see how far we've come.

As I mentioned earlier this week, we lost the Sildenafil (which he seems to have done great with, thankfully). Today, we took the next step - we switched him from Propranolol to Atenolol for his fast heart rate. This is big for 2 reasons - the first is that Propranolol was 3x a day, but Atenelol is only 2x a day. This means that all of his meds are now 2x a day or less. The second is that Atenelol isn't available in a liquid form, so we had to get it in tablet form. I had anticipated that I'd have to crush it and mix it with his Enalapril, his last remaining liquid med at this point.

But, no. I figured I'd let him try and take the tablets as-is. He tried and told me it tasted "yucky." I told him to drink his milk afterwards, that it would take the taste away. So he did. And did it again at dinner like he'd been doing it forever. Bodie, our little amazing 29 month old fighter, is now taking tablet meds no problem whatsoever. I am floored. These aren't even "chewable" - they're small, but they're adult tablets, designed to be swallowed. I haven't tried them, but c'mon, they can't taste good. But he took them! This kid is so amazing.

So, our med schedule now?

Breakfast: 

1/2 tablet baby aspirin + 1ml syringe (little tiny amount) of Enalapril + 1/2 tablet Atenelol.

Dinner:

 1ml syringe of Enalapril + 1/2 tablet Amiodarone + 1/2 tablet Atenelol.

And that's it! 4 meds. 2 syringes. 4 little half tablets. That's it. Seriously, people. This is HUGE. He takes it all (including his syringe meds) by himself. I don't have to prep meds anymore!!! (I think I can handle drawing up 1ml of Enalapril with him stealing my attention - and it sounds like we'll be switching him to tablet form of that before too long as well.) Seriously - no med preparation at 10pm at night! And no remembering to give him his meds before I go to bed at night! Can you say FREEDOM?!? Seriously. First time in almost 2 1/2 years that I'm not prepping meds - or administering them before I go to bed. Whatever will I do with my time now?!? Maybe I'll actually let this little guy sleep at night now. :-)

So proud of him...and of us...for making it to this point. (Yep, we know this will all change come-Fontan, so for now, we're going to enjoy this little bit of normalcy!)

The Breakup

Yesterday, Bodie ended a long (2 year +) and tumultuous (on again, off again, back on again and desperately needed) relationship with his beloved Sildenafil, the pulmonary hypertension drug better known as Viagra. 

Bodie giving himself his last dose.

Mommy is thrilled (no more battles with the insurance company - you'd be amazed at how hard it is to get something approved for your 2-year old son to be able to breathe properly, considering most of the male population over the age of 60 has no issues obtaining it).

The cardiologist is happy (no sense in keeping him on a med he doesn't need anymore).

Let's hope Bodie's body is as happy as the rest of us.

Big day for our little man. 

There is HOPE...part 2

If my last post was directed at parents finding themselves trying to vacation for the first time with multiple kiddos, this post is directed at parents finding themselves facing a new diagnosis of HLHS. When we received our diagnosis almost 2 years ago (wow, can't believe it's been that long), Dusk and I grieved for the loss of the life we had envisioned for ourselves, for our children. It's just kind of what every parent goes through as you face a diagnosis of a special needs or medically fragile child. I think every parent has something they hold onto, that kind of represents their "before" life, the life they lived before they received the diagnosis. For Dusk and I, we held onto Tahoe, the place where Dusk had vacationed as a child and we had taken Sierra as a toddler. When we received our diagnosis, we figured our dreams of family vacationing in Tahoe were just a part of our "before" life. Like everything else, we would adjust. But that didn't mean we weren't sad about it. We knew the likelihood of taking a child with a half a working heart to a high elevation was probably pretty slim. But we still held hope - an outside hope that maybe our unborn child would fight this HLHS thing with all he or she had, and that maybe, just maybe, we would make it up to Tahoe someday.

So, when we made it up to Tahoe last year, with oxygen tanks, a pulse ox machine, and nerves all in tow, it was amazing and incredible, a true dream coming true. We tried to take advantage of every moment (even the trying ones - which, as it turned out, were most of them), knowing that there was a good chance we wouldn't make it back up this summer, being that we'd either be too close before Bodie's Fontan that his sats wouldn't be high enough, or we'd be too close post-op to push him at elevation. So what an absolutely mindblowing experience it was for us to be back up at Tahoe again this summer, having even more fun than we did last summer. What a ride it was. And perhaps made even more amazing just in knowing what a miracle it was to have gotten there at all, and in knowing each year we spend there might be our last. So we make every moment count.

So, to newly diagnosed parents, I offer you HOPE. Every child's journey is different and the fact that we've made it to Tahoe 2 years in a row doesn't mean every child will. But hold onto whatever dream you have for your child and your family. Because you just never know what God has in store for these special kids we're privileged to parent. No matter how long we get to parent them for, they're special and they're incredible gifts.

What I can say unequivocally is that, the day we received our initial diagnosis, or the better part of 5 months we spent by Bodie's bedside in the hospital, worrying whether he would make it another day, we never in our wildest dreams imagined we'd be up at Lake Tahoe 2 years later.

And yet, there we were, seeing a lot of dreams come true...

We played in a park at 6,000ft

We went on a hike at 8,500ft (this was SUCH a dream of ours, I can't even tell you)

...and apparently, my kids interpreted "Say cheese" as "strike the most ridiculous pose you can"

We took the kids to Circus Circus, where apparently they weren't as bothered as we were by the fact that the "acrobats" were a couple of way-too-old-to-be-in-spandex jugglers...

We got to spend SO MUCH time with grandparents who live 8+ hours away. The first 2 times they met Bodie, he was inpatient, literally fighting for his life. The third time, he was recovering from his 3rd major open-heart surgery. Being able to spend time with them outside of any hospital setting is NOT something we take lightly. 

We got so dirty we got to take a bath in a bucket in Popo's garage.

We got to go out with Gram Jan and Popo Alan to eat at my favorite - a casino buffet (hey, we all have things weren't not proud of - my love affair with casino buffets happens to be one of mine...)

(yep, Bodie definitely was blue at times during this trip - but in all fairness, he had just eaten ice cream)...

And finally, we got to take pic of each of their kids with their namesakes...

(Ok, we didn't really name Sierra after the road the Circus Circus was built on, but it was a cool pic)...

But we did really name Bodie after the town...

And I LOVE how they're both pointing at the sign...

So, to families facing a new HLHS diagnosis, what I can say to you is yes, grieve you must, because your life will be very different than you imagined. But, when you're done grieving, take heart, and have HOPE. Dream big. Because our amazing kids deserve nothing less than our greatest dreams for them.