Monday, September 30, 2013

Rethinking the day that changed everything...Four years later

On October 1, 2009, we first heard the words "your baby has a severe congenital heart defect." Like so many parents, the news was received at our structural ultrasound, when I was 17 weeks pregnant. The experience was traumatic, to say the least, not the least of which was because, save for our incredible cardiologist (who by the grace of God happened to be in the office that day, doing prenatal consultations), the response from the medical team was largely negative, with most surprised that we were not choosing to terminate. Although they were compassionate, the overall feeling that we were given was that our child was in grave danger and would likely not make it to term - and, if the baby did, would not have a good prognosis. It often felt as though we were fighting our medical team to stay positive. The frustrating thing to me is that I now know that there is a great deal of HOPE with these kids, and none of that hope was conveyed to me by the medical team (again, save for the cardiologist).

Every year, on October 1, I send our perinatalogist a letter, just wanting to show him that kids with HLHS can do well and thrive. You can find my 1-year letter here, my 2-year letter here and my 3-year letter here. This year, on the 4-year anniversary, I am once again taking the opportunity to reflect and share Bodie's story with him. Here is my letter...

October 1, 2013 

Dr. Rotmensch,

It seems hardly possible that 4 years have passed since I met you. Since you walked into that exam room with 2 other doctors, echoed my unborn baby’s heart for what seemed like hours, pushed your glasses down the bridge of your nose, looked at me and said in a soft voice, “I am so sorry.” And, just like that, my life was never the same. The weeks and months that followed would be a blur of fear, worry and the unknown. 

I wasn’t sure whether I was going to write you a letter on the anniversary of our diagnosis this year. Honestly, we’ve been living life and I wasn’t sure I’d find the time. 

But then, as life with a medically fragile child tends to be, things got unpredictable. And we found ourselves back in the hospital. And I realized that this year, perhaps more than ever, under these circumstances, you needed to hear from me. You needed to know, even with my son lying in a hospital bed, with talks of a picc line and iv antibiotics and infection, I don’t regret it. Not for one minute.

I don’t regret giving my son life. I don’t regret fighting for him. I don’t always love this new world our family has found ourselves in, fraught with fear and worry and the unknown. But we don’t ever regret our choice to continue the pregnancy.

In this world, in the fear, we have found strength and resilience we never knew we had. And we have gotten to know and love the bravest boy we’ve ever known. 
2013 has been a bit tougher for Bodie, with another open-heart surgery followed by an open-chest surgery (although, I suppose, when you’re talking cracking through my son’s sternum in either case, the fact that his heart itself was not cut open in the latter seems somewhat like splitting hairs) 4 days later, a cardiac catheterization, 2 cardiac ablations and now a hospital stay for a pacemaker site infection. But, even so, all told, we have only spent 12 nights in the hospital this year. And the rest of the year? We’ve been LIVING LIFE.

I won’t lie. This year has brought plenty of tough moments. Realizing that my son’s ablation wasn’t successful and that we had cauterized parts of his heart for nothing was one of them. Hearing that a possible infection prevented them from replacing his pacemaker during his planned open-heart surgery and that his chest would have to be re-opened in less than a week to insert the pacemaker was another. Helping medical personnel hold my child down through 3 attempted iv placements was another. 
But that’s not what I will remember this year for.  Not even close.

I will remember 2013 as the year that he started preschool. 
I will remember that, when evaluated by LAUSD to determine whether he needed any services, we discovered that he tested at or above age level across the board. (In cognitive abilities and receptive communication, in fact, our amazing 3-year old boy tested mostly in the 4-5 year old range.) And I will remember the woman who stopped us in the Bed, Bath & Beyond checkout line to ask how old Bodie was, her surprise that he was only 3, that she thought he was much older based on our conversation and his reasoning abilities. 

I will remember this was the year I realized what a magnetic personality he has, how strangers are drawn to him and want to talk to him, how they are amazed when they learn everything he has been through.

I will remember that he learned to memorize Bible Verses, and is obsessed with AWANA and starting the Cubbies program this year.

I will remember how much he loves his sister, and how much fun they had together at Tahoe this last summer.

So, Dr. Rotmensch, when you ask me whether I regret giving my son a chance, whether parenting this fragile child is worth it or I wish we could somehow start over with a “healthy” child, I will tell you that I don’t regret it, and that I wish EVERY parent facing a new HLHS diagnosis could see how incredible these kids are, how fantastically "normal" their lives can be, and that for so so so many of these kids, the seemingly insurmountable medical challenges early on are just stumbling blocks in the every day typical lives they lead.

So yes, tell expecting HLHS parents that this is a battle that will never be over, that their child won’t be perfect, that they’ll have to adjust their expectations for what their future was going to look like. But then, tell them that it, all of it, is 100% worth it, for the chance to parent such incredible kids. Tell them they will learn more about themselves, about hope and about love than they can even begin to imagine. Tell them their 3-year old may someday be running circles around them, and telling them incredible stories, and making everyone laugh with their infectious laugh. Tell them that ½ a heart does NOT mean ½ a life. 

And then, give them a Sisters by Heart brochure. We can take it from there.

Dusk, Amy, Sierra & Bodie Bennett.


Saturday, September 28, 2013

Better days ahead...

We don't know how far off they are, or what exactly they'll look like, but of this we are certain - we have better days ahead.

Last night, after having 5 different iv's attempted and being hit with enough meds to knock out a horse, our sweet boy sat up abruptly from a sound sleep in recovery, gave us a huge smile, tore the 02 off his face, mumbled something incoherently, threw himself back down on his bed and passed out again.
The next time he woke up, he gave me a huge smile, and said "I want to buy something." When I asked what he wanted to buy, he responded "Angry Birds!" Our son had never played Angry Birds prior to the picc line placement yesterday, when the Child Life specialist let him play it on her iPad to distract him. That was the LAST thing I expected to come out of his mouth. I love this kid's comedic timing. Always when I need it the most. 

By this morning, he was 100% back to normal and ready to play.
We spent the better part of the morning in the play room, where the volunteers marveled at what Dusk and I have already figured out. 
This kid is amazing. He has a true gift of finding joy in all circumstances (except for, as any of my faithful blog readers know, trying to put his underwear on correctly, which continues to be akin to asking him to dismantle an atomic bomb, apparently). But I digress. Seriously, it is incredible to watch this kid have this contagious zest for life, despite going through some pretty horrendous stuff. We could all use a lesson from him about how to find joy in all circumstances. 

The official word is that the infection cultured staph (NOT MRSA). Praise God! The recommendation of Infectious Diseases is 14 days of IV Antibiotics (starting today), followed by oral antibiotics. We were switched from the Vancomycin / Zosyn (which required approximately 120 minutes every 6 hours to administer) to Ancef (which requires less than 10 minutes every 8 hours). Can I get a Hallelujah?!? What portion of the IV drugs will have to be done inpatient, vs. what they will allow us to do at home with the picc line is up to the CT team. We should know more on Monday.

It has not escaped my attention that what we are now jumping for joy over (2 weeks of iv antibiotics) was devastating to us the day they admitted us. Absolutely puts things in perspective, and reminds me, like our son, that Dusk and I could work on finding joy in all circumstances. 

We had a little help in that arena today, both with visits yesterday from our sweet heart friend, Lucy, who came armed with love and presents for the kiddos, including a sweet doll that Sierra LOVES...
And lunch today with fellow heart mama Julia and her sweet daughter, Grace, who Sierra adores.
(Bodie may have been a teensy bit excited to leave the floor and go downstairs to eat lunch with the girlies.)

Thank you, Julia and Grace, for taking time out of your busy schedule to bring our girl up here. And Carrie and your sweet family, thank you for coming all the way up here to bring her home for us! We are so blessed to have so many people who love Sierra!

 Tonight, Please pray:
1. That Bodie continues to stay symptom free.
2. That he has no adverse reactions to the new antibiotics.
3. That CT Surgery decides to send us home to finish his course of antibiotics there; and that he doesn't catch any of the other nasty stuff going around the hospital on the cusp of cold and flu season.
4. That we can all remain patient while not knowing the specifics of an indefinite hospital stay.

Friday, September 27, 2013

Today was not my favorite day.

Actually, today was a completely craptastic day. Bodie was able to get his picc line, but not until 4pm, after having been npo since 8am since "it's going to happen soon!" (the poor kid spent the better part of the day crying about how hungry and thirsty he was - ah, the joys of hospital life), and after blowing 1 iv and having 2 more unsuccessful stick with finally a successful one following. I was in bed with him, helping to hold him, while 4 or 6 medical professionals held down all 4 of his extremities in an attempt to place an iv solely to get sedation meds in for purposes of his picc line placement.


Far worse even than having to hold him while he was put under for surgery. That at least was overwith quickly. This was probably at least 15 minutes of him screaming and thrashing while I helped the doctors hold him down. He was sobbing. I was sobbing. It was something I don't EVER want to repeat. 

After they got the iv in, I snuggled him into me, saying "it's ok, Bodie. Mommy is here. Mommy is here." as if that somehow could comfort him. How on earth could that comfort him? Hadn't I just been there, unable to protect him, while doctors were assaulting his precious little body? Hadn't I participated in the assault? I know it was a necessary evil, but even so, my mama's heart is a little lot broken right now.

As a mom, all you want to do is to protect your children, to shield them from the pain in the world. And CHD robs me of my ability to do that. Sure, no parent can truly protect their child from pain. But there are not many parents of 3-year olds who have to be a party to what we've been asked to be a party to over and over.

Now, Bodie is passed out in a bed in the CTICU, on 2 liters of supplemental oxygen and in EAT, from what I can tell. We're waiting for him to wake up to wean down his 02 and send him back to his room in CV Acute. They hit him with a fair amount of heavy sedation meds, so it'll probably be awhile before he wakes up.  The nurse just removed the iv in his foot and he didn't even flinch, so I think we'll be here awhile.

As far as the infection itself, the culture has grown a type of staph, either MSSA or MRSA. Our hope is for the former, but, even so, we're looking at a significant course of iv antibiotics. What type of antibiotic, and what duration of the course will be done inpatient vs. at home remains to be seen. We should know more in the next few days, as the culture is finalized and we see how soon the wound itself heals. It's looking better and less inflamed, but even so, there's still a ways to go to it healing completely. 

So, today was not my favorite day. Probably not even one of my favorite 100 or 1,000 days. Praying for better days ahead - and a better update once he's back in his room.

Please keep praying for our miracle boy.


Thursday, September 26, 2013

In a Holding Pattern

I don't do well with holding patterns, with just waiting. You can't be proactive about waiting, can't feel like you're working toward a goal. God is clearly working on my patience with this hospital stay. 

We don't really know anything more than we knew yesterday...except that, unfortunately, we will definitely be here longer than we were anticipating. They lanced the infection and sent it off to culture. Infectious Diseases stopped by today and recommended a picc line be placed. In their opinion, without even knowing what the culture is showing, our best case scenario is 12-14 days of IV antibiotics. If it cultures something more serious, like MRSA, we're looking at a much longer course of treatment. We are hopeful that it is a less serious strain of strep or staph, but given Bodie's history of MRSA as an infant, there is a very real likelihood that we could be dealing with MRSA again. We should know for sure within the next 24-48 hours. 

On the upside, we got to leave the floor! That's actually never happened before for us, since Bodie's pretty much always required continuous monitoring. But I asked whether we could leave the floor and just check back in for vitals, antibiotics, etc. To my surprise, they agreed. Huge, huge bonus for us. Bodie LOVED getting outside.

 And our stellar nurse today, Kat, knew Bodie is fascinated by the vaccuum tube system at CHLA, so she let him send his pumpkin and a letter from one nurse's station to another. He pretty much thought it was the coolest.thing.ever. 

And, our good heart buddy, Jeni Busta, one of the oldest HLHS survivors at 28, came to visit us! Bodie loves Jeni and I so enjoyed having her visit.

Finally, Dusk brought Sierra up tonight, and we got to hang with her a bit, and then she went to a Sibling Event downstairs - a magic show just for siblings of chronically ill children in the hospital. It was amazing. She saw a magic show, and then got to learn a magic trick, and then perform a show for the parents. She loved it - and we loved seeing her get all the attention! Hospital stays are so all about the sick child, so to have something at the hospital JUST for siblings is just amazing and so touching.
Overall, Bodie is doing well. No fever, his energy is great and he doesn't seem to mind too much being here. But lot of up in the air stuff, which has the potential to make all of our lives very difficult, which makes me VERY nervous and VERY impatient. 

So, we need prayers, big time, tonight. 

1. Most importantly, please pray for Bodie's culture to show nothing serious requiring a prolonged course of iv antibiotics or any other more aggressive treatment.

2. The incision site looked better this morning, but by this evening it was looking red and inflamed again. Please pray that the incision shows a major improvement in appearance tomorrow.

3. They are trying to add him onto the picc schedule. Since they don't know when he'll actually get on the schedule, we may be npo (not allowed to eat or drink) in anticipation of sedation for quite a while. Please pray that they can get Bodie on the picc line schedule, the picc line placement goes off without a hitch and that he doesn't have to be npo any longer than absolutely necessary.

4. Finally, please pray for our family to figure out how we're going to handle all of this. Dusk and I are kind of in a tailspin trying to manage an unplanned, indefinite hospital stay while he's working, really in too much pain from his collapsed hip to be driving to the hospital on a regular basis, and Sierra needs to be in school. It's a lot to juggle and we're kind of panicked trying to figure it all out. Not to mention there's a whole lot of emotions involved in this, particularly for me. Definitely another blogpost for another day about that. Quite frankly, I'm too emotionally spent to blog about it right now. But for now, we know that a lot of you have offered to help, and we so appreciate that. Unlike Bodie's last surgery, we will absolutely be taking up every offer of help we can. Right now, we need help. Please be looking for specific ways we'll need help in the near future. 

Thank you as always for your prayers for our miracle boy!


Wednesday, September 25, 2013

Pacemakers are great...until they're not.

So, here's the thing about pacemakers. They're wonderful, amazing, (in Bodie's case) life sustaining devices. But, they're exactly that - devices. They're a foreign object put into a human body. And, when infection sets in on a pacemaker, it can wreak havoc on the body, potentially creating a life threatening situation. Because the pacemaker is a foreign object, if bacteria settles into it, the body can't fight it off - the body's own immune system can't attack it. Infections can get seriously out of hand. So, when there is even a threat of infection, the medical response has to be really aggressive.

This morning, I noticed a white spot and red inflamed skin around Bodie's pacemaker incision site. I toyed (for maybe a second) with calling the pediatrician to have him seen, and then thought better of it and called CT surgery. Once I sent them a picture, they wanted to see him right away. So, we found ourselves in the cardiology clinic this afternoon. After 2 NP's looked at it (and again reiterated the seriousness of pacemaker infections), they had the surgeon weigh in as well.

The consensus? Although it looks like it is likely superficial, we don't know for sure - and you cannot be too careful with infections near the pacemaker. So, they admitted us for iv antibiotics. Although it seems to be spreading and getting worse as we sit here, we are hopeful that we caught this very early (this literally popped up overnight - it looked FINE yesterday). They put in a peripheral iv tonight (luckily, they got it in the first try), but will be replacing it with a picc line likely sometime tomorrow. They are hitting Bodie with some heavy duty meds (Vancomycin and Zosyn) which are known to blow piv's left and right. In the interest of not having to repeatedly replace iv's, we're ok with the picc line. 

Our best case scenario is that Bodie's body responds very quickly within the next 24-48 hours and we see the redness and puss diminish. If that happens, then we'll be looking at 5-7 days of IV antibiotics and then, hopefully go home on oral antibiotics. If his body doesn't respond, then they'll likely open his incision up, drain the pus, culture it and go from there. 

We have a lot of worst case scenarios in play, and all of them involve more trips to the OR. One of the worst would be that the infection has been brewing for some time and runs not only to the pacemaker (in his abdomen) but also to the wires (attached to his heart). If that happens, they would have to remove both the pacemaker and the wires (yes, this would requiring opening his chest again), clean everything out, let it heal - and then put in a new pacemaker and wires. Yes, this would be repeating his last surgery. And yes, during the time it is "healing," Bodie, because he is pacemaker dependent, would be inpatient using temporary pacing wires attached to a box. We all remember how well that went when he was post-Fontan.

I know, I know - I'm getting ahead of myself. It is more likely a superficial infection and iv antibiotics alone will kick it in the butt. But the truth is that we don't know. And we want you to understand just how serious this has the potential to be, and why we are so scared and unsettled about it all. Because we ARE scared. Yes, we know that God is in control and we're praying like crazy. BUT WE'RE STILL SCARED.

Bodie is doing fine with the admission. 

Other than some tears upon finding out (and lots of questions about why he had to stay and when we can go home), he is faring quite well. Mommy had a little breakdown when they told us their fears of how serious this could be and that they were admitting us. To say that being readmitted was a letdown, is putting it mildly. It stinks. Big time. Daddy and Sierra are hanging in there - Daddy got to hang with Bodie this evening while mommy ran home to pack our bags. Sierra got to come up for a few minutes tonight to see Bodie and he was SO SO excited. The nurse said his excitement made her week. :-)

Tonight, please pray that Bodie's body responds to the IV antibiotics. Oh, and he also has an ear infection - pray we can get some drops and get that gone as well. What can I say? Around here, when it rains, it pours. 

And, a quick shout out to my dear heart mom friend, Melissa, who let me literally sob into the phone with her right after we found out we were being admitted. I so needed a friend in that moment, and I am forever grateful that she was that friend. 

And a quick shout out to the awesome Spelbrig family, who picked Sierra up from school, did homework with her and took her out to dinner with them! She had so much fun, I think she'd have stayed there all night if she could have! THANK YOU for taking care of one of our babies so we could focus on the other!

Sunday, September 22, 2013

Borrowed time

When Bodie was recovering from his shunt recovery and pacemaker placement at 2 months old, one of his roommates was an older boy, around 8 or so. The boy was non-communicative, and lay in his bed all day. 

I assumed he had always been that way. At a hospital like CHLA, you see so much, so many kids with enormous disabilities, debilitating conditions. I assumed he was in that category, had always had a debilitating condition rendering him unable to communicate, save for low guttural screams out of nowhere, often throughout the night. I can still hear his screams if I try hard.

His parents were such nice people. His mom had pictures up near his bed; a picture of a little boy with a huge smile sitting with schoolmates, and another of that same little boy with a much younger boy, goofing off. One day I asked her about the pictures, and she told me that sweet boy, the one with the huge smile and the curly brown hair, was her son. A funny little guy, who loved school and his little brother more than anything. A little boy who had heart surgery and a pacemaker placed as an infant, and had been thriving and living a totally typical life since. A little boy who, a month earlier, had been at Chuck E. Cheese with his younger brother and his aunt, and had collapsed in the parking lot outside. His aunt did CPR, but the massive adrenaline rush he suffered had rendered his heart unable to pump blood to his body. He had suffered a massive stroke. He couldn't walk, couldn't even sit up, couldn't communicate at all. He was now this shell of a boy in the bed next to Bodie's. The term tragic doesn't even do it justice. 

Two weeks after we were discharged from that hospital stay, he suffered another stroke and died shortly thereafter. 

Our introduction to the brutality of heart defects was early and swift.

It would be months before I would have the courage to ask a nurse about that family, why it had happened, why his pacemaker hadn't prevented it from happening. Her answer would rock me to the core, and years later, would still haunt me. Her kind eyes, the words that he, and his family, had been one of her favorites, that it shouldn't have happened given his cardiac defects. And then, she would say  "you know, some of these cardiac kids are just on borrowed time."

Borrowed? From what? From whom? For how long? It's such an easy term for a nurse to throw out, for anyone to throw out who doesn't truly have to think about what it means. But so terrifying for a parent to comprehend.

I don't think my son is on borrowed time any more than any other child. Certainly not more than the 5-year old killed suddenly in a car accident, or the 10 year diagnosed with terminal cancer. The difference is that, unlike their parents, whose lives are changed unexpectedly in an instant, like being hit by lightning on a crystal clear day, I live every day walking amongst the storms, watching the lightning and hearing the thunder. I measure my steps carefully, listen for the thunder and watch for lightning, and take cover when I can. I think I am doing everything right to avoid the lightening. But still, it might happen - and others will think to themselves "it was so tragic, but we always knew it might happen."

To say that our children are borrowed implies that they are not ours, that they never were, that we have them for just a short time before returning them. It seems unfathomable to me that there is more than this moment, more than the sweet kisses and hugs, more than the sweet laughs, the wispy blonde hair across my chest as he sleeps in my arms. More than the mispronounced words, more than the silliness of a 3 1/2 year old who has been through way too much in his short time here on Earth. 

And yet, we know these are just fleeting moments. We know it from parents who have walked in our shoes before, who look wistfully at us and say "enjoy these moments. They fly. Before you know it, they will be in college..." We know it from grandparents, who grab our children and hug on them until their arms are tired, who understand how fast this time is, how they are only "ours" for such a short time, before they become their own, independent people.

And we know it, more profoundly than anywhere else, in the promises of our Lord. We know that our children, all of them, sick or healthy, half-hearted or whole, are His, that we are borrowing them, that He has entrusted them to us for now. That our role as parents is to raise them to know Him, to trust Him, to follow Him with their lives. 

He promises us that this, all of this that seems so terribly important right now, is just temporal, soon to pass. He promises us a Heaven so far beyond our wildest dreams, beyond anything that our human minds can even grasp. When that day comes, our time here on earth will be exactly that - borrowed. Heaven will be so glorious by comparison that we'll be grateful our time on earth was so short! 

Bodie is sick tonight. Just a cold, but even so, he's not even 6 weeks out from major open-heart surgery and I am worried. I worry about what might send us back to the hospital. I worry about whether his body is as robust as it was 7 weeks ago. I...just...worry. It is times like this, when my heart hurts at the thought of just how borrowed my time is with my sweet son, that I am especially grateful for the promises of my Savior. I honestly don't know how I'd get through this scary, scary journey without knowing how it will all end. Praise God for his promises of beauty and forever in the midst of the borrowed time we live in.

Saturday, September 14, 2013


I'm not one to aspire for average anything. In my household growing up, C's may as well have been F's. Well, if I'm being completely honest, B's may as well have been F's. Average was never an option. 

But the further I get into parenting, the more I am convinced it is one giant exercise in learning you will never be excellent at anything. Ever. Again. Suddenly, average doesn't seem so bad.

I know moms who are giants in this whole mothering thing. Moms who make it look easy, who make being a mother and a wife look they were born to do it. 

I think of Joy, who lovingly raised 4 kids of her own, and then adopted 3 more. Whose house is meticulously decorated and always looks spotless. And who is always cool, calm and collected - oh, and have I mentioned she looks like a model? Or Erika, who has 5 kids and the oldest is 7. And she homeschools them all. And they're the smartest, most well-rounded kids you'll meet. Erika always has a love for Jesus in all she does, and radiates love and life through the managed chaos that is her life. Oh, and she sews - and has an incredible vegetable garden, right in the urban jungle of Los Angeles. She's a flipping modern day Laura Ingalls Wilder. 

Or Stacey, who not only works full time, but has two sweet little girls, one of whom has 1/2 a heart like Bodie (so much for using Bodie's heart as my excuse for my averageness!). And she travels cross country tirelessly advocating for all of our CHD kids. And is the single most reliable person I think I have ever met. Or Valerie, who moved her family cross country to be near better medical care for her husband, and near family to help them in their time of need. Who works her butt off all day and then drops down to the floor to play with her daughter all evening, and always makes sure her daughter eats her veggies. Who ALWAYS gives 110% attention to her daughter, who never utters the phrase "I'm too tired to play with you honey...go entertain yourself for a bit." Who remembers what it's like to be a child and embraces how fleeting childhood is.

To these moms, the A+ superstar moms, I beg you, PLEASE DON'T STOP BEING AWESOME. Truly. Because you give the rest of us something to aspire to. Honestly, you're my real life Pinterest Boards. I can see what you do, and creatively think of ways to do it easier, cheaper and more quickly. I call it "the Amy touch." Which I suppose could just as easily be called the "the half-assed approach." Whatev.  It gets the job done.

But to the rest of us, muddling through the class of C-level motherhood together, for the love of all things holy and beautiful, can we PUHLEASE stop beating one another up, falling all over one another trying to reach the A+ level? Can't we just accept that we're all doing the best we can, it's ok to be average, and maybe being "average" looks a little different for each of us?

I try. I really do. And I do a lot of things ok. I sort of sew, well enough for my daughter to be so impressed by my homemade book covers that she offered to have me make them for her entire class...but not so well enough I can get them done in less than 45 minutes apiece, making her offer pretty problematic...My house is sort of clean, if my super clean kitchen countertops (the only thing I CAN manage to keep clean) balance out the clothes that seem to find themselves all over my bedroom floor...You get the picture. I'm an ok mom. I try to be an A+ mom, but I've sort of realized it's not happening. Some days I do better than others. But, at the end of the day, I have a lot of irons in the fire and they can't all be tended to every day. So I have to pick and choose. Some days I make better choices than others. On the whole, my kids are relatively healthy and happy, and know and love Jesus. As far as I'm concerned, the rest is just icing on the cake. I was feeling ok with this.

But then a couple of weeks ago I saw a post on one of my message boards about a mom that didn't have any fruit and vegetables in her house, who only fed her kids processed foods and how sad it was. I immediately wondered whether I could somehow hack into my babysitter's email account, to see if she was saying something similar about me. We're usually somewhat healthy eaters, but with everything going on this summer, healthy eating just hasn't been on the top of our agenda. Maybe I once picked Sierra up from school with a "snack" of a slurpee and a bag of pretzels. And maybe I let Bodie eat Cheeze-Its for breakfast. And maybe both of those things happened last week. I'm not a bad mom who needs anyone to feel sorry for me - it's just where we're at right now.  I guess my point is that maybe we don't need to beat the mom up who only serves her kids processed food, because today, that happens to be the best she can do. Maybe she's not intentionally trying to inject her kids with chemicals. Maybe she's just decided that other things right now are more important. And that's ok. 

Wouldn't it be awesome if we, as moms, instead of looking for the ways we're different to belittle the choices other moms have made, could focus on what we have in common - that we're all just trying to do the best we can? Every day, we as moms have to make choices. Choices that often feel like the difference between our child living on the streets or in the White House someday. Processed food vs. raw food. Overscheduling our kids vs. risking that they'll be totally undersocialized because we don't have them in enough activities. Skipping bath to read one more book and remaining so stinky no one will want to sit near them at school, thereby ruining their social life forever vs. skipping that book, stunting their ability to learn to read, thereby dumbing them down for life. Lots of decisions. Lots of guilt.

How about we, as moms, support one another, build one another up, instead of adding to the guilt? How about we assume we're all starting from the same place - trying to make the best decisions with the limited time and resources we have? Maybe that means only organic food and homemade meals for one mom, maybe it means all processed food, but the chance to have more family time together because she's not cooking to another. Maybe it means getting a workout in every day for her sanity to one mom, maybe it means consistently getting a full night sleep to another. Maybe it means a beautifully clean house and the calm it brings to one mom, and maybe it means a messy home and the joy it represents to another. I'm not saying they have to be mutually exclusive, only that none of us have truly walked a mile in another mom's shoes, so we don't know what goes into her decision making process. 

Maybe, just maybe, if we could learn to do this, our children could learn from us. They could learn that, just because others make different priorities than we do doesn't make them bad. Just different. How cool would that be if we, as moms, could reshape how the next generations of moms relate to each other?

In the meantime, to my fellow average mamas, I lift my coffee mug to you in solidarity! 


Wednesday, September 11, 2013

We should have known better...

Yesterday, Bodie gave us quite a scare. You'd think we'd be used to it by now, used to this roller coaster ride he likes to remind us we're on. But nope.

To say that he had us "a bit worried" is like saying he looks "a bit blue" in this picture, taken last week.

In reality, I may or may not have been so freaked out I was sitting in my kitchen last night, sobbing into my glassbottle of wine. 

Let me back up.

When I last updated, Bodie's EAT had set back in and we were gameplanning how to treat it. Well, after that, he spent the next 4 days in EAT. All day, every day, with a break to ride his pacer at night. His body doesn't like EAT in general. And it likes prolonged EAT even less. By the end of the week, his sats were low and he was fairly blue and winded. Mama wasn't happy. 
Get a load of them purple lips!

So we changed up his meds on Sunday and the EAT went away...For 57 blissful hours...During those 57 hours, his sats didn't go up that much, but enough - and his entire disposition improved. You could tell he felt SO MUCH better. His coloring was fantastic, and he was literally eating us out of house and home. 

And then, yesterday afternoon, all proverbial Hell broke loose in his little body and, for some reason (we have no idea what triggered it), all of the sudden his lips turned dark purple and I knew something was up. I hooked him up to pulse ox and he was satting 65 with his heartrate in the 160s. And the poor kid sat in the 60s with his heart racing for 4 or 5 good hours before the Atenelol kicked in and his heartrate dropped and his sats came up a bit. That was about when I found myself in the kitchen with my wine glassbottle. All I could think was "are you flipping kidding me? We sent a blue and winded kid into surgery with the assumption that we would get a pink and nonwinded kid out. So WHY are we still dealing with this, a month post-Fontan???" Demoralizing was the best way to describe it.

It took us talking to Bodie's cardiologist yesterday and her squeezing Bodie in today for a full cardiology workup to piece together what happened. The good news is that Bodie's echo today looked fantastic - he had no fluid buildup whatsover, no tricuspid valve regurgitation and his function looked beautiful. So, our best guess is that, for whatever reason, yesterday's EAT episode caused him to have a pulmonary hypertension attack. I should have expected it, but for whatever reason, I didn't. Had I been expecting it, I think I would have freaked out a little less last night.

Bodie has a history of pulmonary hypertension, where his lung beds clamp down and won't allow the necessary blood through. There's a lot of theories on why kids develop this; in Bodie's case, it's likely due to extra connective tissue lying over his Atrial Septal Defect in utero, causing an effective restricted ASD and increasing his pulmonary vascular resistance. That last sentence was for my heart mom friends and those in the medical field. For everyone else, just know that the way his heart developed in utero was hard on his lungs and because of that, they don't like to get messed with. Open-heart surgery definitely "messes" with them. When they get messed with, they tend to fight back, by getting really tight and not allowing adequate blood flow through.

For about 8 months after Bodie's Glenn, he struggled with 2-3 pulmonary hypertension episodes a month, where his sats would drop to the 60s for a couple of days, and then bounce back up. Since he's always been a lower satter and came back up on his own, his cardiologist was ok with us monitoring at home. So we maxed him out on Sildenafil and prayed that he would outgrow it. And he totally did. The last episode he had was summer 2011. And we weaned his dose down to next to nothing. So, we shouldn't be surprised that we find ourselves in pulmonary hypertension land again post-Fontan. We're learning that this is just how Bodie's lungs respond to surgery.

So, today's cardiology appointment was helpful for a number of reasons:

Pulmonary Hypertension
We definitely are seeing PH attacks. He's already on a hefty dose of Sildenafil. So we're going to continue it and, ifwhen he has another attack, we'll give him an additional 1/2 dose of Sildenafil to help him through.

We don't know why the EAT caused the PH attack yesterday, or heck, even if it was related. For all we know, it could have been purely coincidental. What we do know is that the all day every day EAT isn't doing him any good. As far as I can tell, it's preventing his body from recovering from the Fontan the way it needs to. So, for now, we need to be aggressive in getting it under control. So, we restarted the Amiodarone tonight. Not our first choice, but for now, our best choice. Once we get his PH under control, then we can talk about weaning the Amio again and see where we're at. But, at 3 weeks post-op and dealing with twitchy lungs, we don't need to be taxing his body by asking it to deal with one more thing.

The Fontan
From what we can tell, his heart and body really like the Fontan physiology. We took him off the lowfat diet over the weekend and he's now back on a regular diet. He's eating great, and, when he's not in EAT, his energy levels are fantastic. Overall, his color is better. His liver (the area typically affected by the Fontan) is happy so far, sitting right where it should be. And his body had no issues with the first diuretic wean. Since no fluid has build up in the 2 weeks since that wean, we dropped the Aldactone today (another diuretic) and cut his Lasix (his last remaining diuretic) in half. To be perfectly honest, between the hospital stay, the low-fat diet and the diuretics, the poor guy is so scrawny. In the past month, he grew an inch and lost 2 pounds. He is SO skinny. Today, we had lunch with our dear HLHS friends Lucas and Michelle, and Lucas (2 years old) kept saying "Boney" instead of "Bodie." Michelle kept correcting him, but really, he was just saying what we all were thinking. ;-) So I'd love to see him gain some weight back. Hopefully, coming off the diuretics will help with that.

So, our overall picture? Things have been stressful the last week. More stressful than we'd like. He's doing well. We're so grateful for how well he's doing. But we definitely needed to make some changes to make this new phsyiology work for him. We're feeling better tonight and hoping and praying for things to continue improving from here on out.

And in related news (as in, related to the topic of how Bodie's CHD has completely ruled our home this summer), this was Sierra's picture in response to "What I did this summer."
We went to Tahoe, spent time with both sets of grandparents and spent loads to time in Palm Springs this summer...and what she remembers is "I went to the hospital and I held Bodie." Sigh.

Please pray
1. The combination of Atenelol, Propranolol and Amiodarone keeps the EAT at bay.
2. The pulmonary hypertension episodes become less and less frequent.
3. His sats come up to a more comfortable range.
4. He responds well to the diuretic wean.

Thank you, as always, for praying for our sweet warrior.


Tuesday, September 3, 2013

Same problem, different day.

Bodie's EAT (fast heartrate) is back again. 

You know, the thing we burned the crap out of his heart to get rid of? Yeah, that's back.

Since we've been weaning his diuretics, I've been spot checking his oxygen saturations to make sure he's tolerating it ok (lowered sats can be a sign of fluid re-accumulation). Saturday morning, I put him on the pulse ox to see his heartrate show up at 180 beats per minute (more than twice his usual resting rate of around 80). I honestly thought the machine was wrong because he was not symptomatic at all. But I pulled out the stethoscope and counted it myself, and actually got closer to 200. 


He spent the better part of the weekend with his little heart racing. We've been able to bring it down to a more manageable range (below 130 most of the time) with beta blockers, which is better, but it's still not his normal sinus rhythm. And, after 2 days of it, his sats are crappy and he's now symptomatic (blue and winded again). To say we're disheartened is putting it mildly. 

Between the two ablations, we've burned a fair amount of Bodie's heart tissue. Why does that matter? Because he is dependent upon his pacemaker. And his pacemaker leads have to be attached to tissue in the heart that isn't burned or scarred. And he only has half a heart to begin with. Which means he doesn't have a lot of real estate where leads can affectively be placed to begin with. And some of that real estate just got the crap burned out of it. In fact, when they went in to place his leads 2 weeks ago, they had a hard time finding a spot where the leads could be attached and conduct well. They eventually did find good spots, but it definitely left us feeling uneasy about future lead replacements. We do know Bodie will need lead replacements throughout his life; our hope is that they will last as long as the pacemaker batteries themselves (possibly as long as 10-15 years); but the fact that he already broke one lead in the first 18 months of having his pacemaker is not a fantastic sign. And we won't go into our other options should they be unable to find a suitable spot for pacemaker lead placement (but I'll give you a hint - there's approximately one option. It starts with 't' and ends with 'ransplant'). 

So, that said, learning that we willingly put more scar tissue on our sons heart, likely compromising future lead replacements, for what amounted to nothing was a hard pill to swallow. Do we regret doing the ablations? NO, absolutely not. We had to try. We made the best decision with all of the information we had at hand. But we're frustrated to be back in the same position we were before the ablations.

Where do we go from here? We put Bodie back on his beta blockers and hope and pray they do the trick. Being on beta blockers regularly isn't a huge deal; neither Propranolol nor Atelenolol have a very big risk profile. No huge long-term risks, other than possibly reducing the efficacy of inhaled steroids for asthma. Since Bodie's asthma is presently managed without the use of inhaled steroids, we're hopeful that won't be a problem.

If the beta blockers don't work, we may be looking at restarting Amiodarone. Amidarone, unlike beta blockers, has a very high risk profile. And it's in all the areas we don't to have to worry about; Bodie's sort of the poster child for the kid you don't want on Amiodarone. We were lucky that he has not had any of the major side-effects yet, but they are associated with longer term usage. If we have to go back on it, we'll do what we have to do. But we're sure love to avoid it. So please pray that we can avoid going back on the Amiodarone. 

Besides dealing with the same old problem we've been dealing with for years now, Bodie's doing awesome. I mean, really truly fantastic. He's responding to the diuretic wean well, and his activity is great (he was up at 11:30 last night, following me around and begging for a snack!) I look at him and honestly, kinda forget he had two heart surgeries just a little over 2 weeks ago. This kid is so.freaking.resilient.

We're now out and about. YAY!!! We went to the Natural History Museum yesterday.
And Art Zone today, a fantastic place where kids can paint, dress up and have a blast. 
(Adorable costume...not so adorable purple lips on the tiger.)

So...if we could just close our eyes and ignore the whole "my-heart-is-trying-to-run-a-marathon-without-me" bit, we'd be jumping for joy at how well Bodie is recovering. Let's all pray together that we can get this EAT under control so that we can truly relax into Fontan recovery and start looking forward. Thank you!