For Thanksgiving, all I want is...the FLU???

Happy Thanksgiving!

WAIT - what did you just say? The FLU???

Yep, that's right. We Bennetts like to share and share alike...including icky, gross flu germs of the 24-hour throwing up kind. We went to Palm Springs to spend the holiday with my family (my mom, dad, brother Matt, his wife Valerie and their cute 5 month old baby Michael). Things started off great and we had a wonderful Thanksgiving dinner. A few hours later, I was sick - trying to convince myself it was food poisoning. Then, Sierra joined the party in the middle of the night, and Dusk was on board by the next morning. We were still holding out a glimmer of hope that it was food poisoning...until Matt came down sick Saturday morning, Val Saturday night and my mom Sunday night. Then came the crankies to our household with Bodie - oh.my.word he was cranky Monday night and yesterday morning, then completely inconsolable yesterday afternoon. Cried for probably 3 hours straight before passing out in our bed at 6:30 last night and sleeping straight through until almost 3 am (didn't even wake up for his meds - took them in his sleep), when he woke up for a feed and went right back to sleep. Luckily, that's all it took for him to kick it. And even more lucky, he didn't throw up - not sure how he missed that part of it, but we count ourselves lucky that he did (dehydration could have been a huge problem for the little guy)! (Who knows - maybe the flu fairy decided he wasn't enough of a challenge since the kid barfs practically nonstop anyway.)

Yeah, good times. Not exactly the best Thanksgiving ever. Dusk laughed at me as I tried to put a positive spin on it. My father has now nicknamed me "Typhoid Mary." What can I say? I think it was nice of us to provide everyone an easy way to take off the Thanksgiving weight. :-)

Anyway, it made for a memorable holiday, and we managed to get a lot of super cute pics (ahem, all taken before the barfing began!):

Bodie and mommy going swimming:

Sierra going with Popo for a ride in the golf cart:

Bodie's newest thing - scrunching up his nose and blowing raspberries as soon as he's decided he doesn't like what you're trying to feed him:
Val and I with the boys:
Tripoding cousins (both boys really got the hang of this over Thanksgiving - yes, I realize this is a milestone usually met by 5 or 6 months, but I prefer to think that Michael is just exceedingly advanced and Bodie is right on target!):
Snuggling cousins:

How cute is this? SO fun to watch the boys together!

Overwhelming gratitude

This past week, I have had a lump in my throat all week just thinking about Thanksgiving.

I have always loved Thanksgiving. I love getting together with family we haven't seen in a while. I love the smell of turkey throughout the house all day. I love mashed potatoes. There are so many things to love about this holiday. But most of all, I love what it represents - a moment of gratitude in a busy, busy world. A day to force your world to slow down just long enough to reflect on what you're grateful for. For us, this year, a moment to look at Bodie's condition for what it is. Thus, the lump in my throat. For to embrace the full gratitude of our situation, we are forced to look at the enormity of what our sweet boy faced. I am forced to take the veil off and face his mortality. Every ounce of my being has avoided doing this ever since I received his diagnosis. If I truly thought about what our sweet boy has been (and still is) up against, I wouldn't be able to get out of bed in the morning. I wouldn't be able to function, overwhelmed by "what ifs" and worst case scenarios. So, instead, I cling to my faith and my Lord's promise to take care of my family and my sweet boy, and a promise of a life after this one sweeter than we can possibly fathom. And every single day I wake up and intentionally focus on God's promises. And my sweet boy's face. And life is good.

But on today, the day of Thanksgiving and thanking God, I must come face to face with the enormity of what Bodie is facing, in order to receive the full gift of gratitude for how far he has come. You see, the good and bad go hand in hand. In order to fully appreciate the good, you must face how bad it was, and how much worse it could have been. It has been a rough year for the CHD community, to be sure. We have far too many new angels up in heaven watching over us, sweet babies taken far too soon. (I've blogged of some of them here, but many times it is just too overwhelming for me to write.) My heart has broken a hundred times over for the mothers and fathers who are grieving today, with empty arms. And my heart still breaks for the CHD warriors in the hospital today, fighting their own battles - Jilly, Aidden, Aurelia, Kennedy and Will to name just a few.

As you all know, Bodie had an exceptionally rough start. He has endured far more than any baby should have to. But we have so so so very much to be grateful for. Things could have been so much worse. Bodie is doing amazingly well. He is smiling, and laughing, and rolling, and tripoding (sitting by balancing on his hands, for those of you without kids!), and standing (with help, of course), and playing with his sister like any other baby, and just, well, being a BABY. ALL the things we prayed so ferverently for. If you didn't know what this sweet boy had been though, you would never guess unless I showed you his scars. He is pudgy (well, his cheeks are) and an unabashed flirt. We love him and could not be more grateful for him if our lives depended on it. The other night, Bodie and Sierra were in the bathtub playing together and he was just cracking up at her (she was pretending to take medicine through a syringe and he, for some reason, thought it was hilarious) and all I could think was that this is exactly what I had imagined and prayed for when I found out we were pregnant with a second child. Our lives are so good. God is so good.

So today, we say THANK YOU for so much. For our sweet warrior boy and his cheeky personality. For our beautiful big girl whose heart has grown exponentially to accomodate the half that her little brother is missing. For our friends and family that have come alongside us this past year and fought for us, and loved us, and held us up when we simply didn't have the energy to keep walking. For the amazing heart community that I have had the privilege of being adopted into by virtue of my baby's broken heart. For my fellow heart moms who walk this path with me, with courage and with love. For every moment that has brought us here.

We wish you a beautiful Thanksgiving, full of love and thanks.

Love,
the Bennett family

Hats off to our hero (and his cardiologist!)

Bodie's cardiology appointment today was FANTASTIC!!! We really couldn't have asked for a better appointment! He did great during vitals. The nurse blows on a little shiny windmill to distract the kids - Bodie kept blowing raspberries at it - as best as we could tell, he was trying to copy the nurse and blow on it. Really funny to watch - we were both cracking up (actually, since he was cracking himself up, all 3 of us were laughing). Then, it took us a few tries to get a good ekg, since he decided it would work better without the stickers and was pulling them off as fast as the nurse could put them on. Poor lady. But he was much more cooperative during the echo. He was pretty squirmy, but didn't really cry too much, so the tech was able to get the pictures she needed and I don't think it took longer than maybe 15 minutes or so.

Dr. Kim said the echo looked great! His heart function is fantastic (for him, anyway) and his tricuspid valve regurgitation had gone down a lot (some triscuspid valve regurgitation/leakage is expected with HLHS, just because the right ventricle is working harder than a normal heart, but your best case scenario is that it's minimal and no intervention is required). She suspects the lowered heart function and increased regurg that we'd seen 2 echos ago had just been a result of surgery and now everything has settled back down. PRAISE GOD!!! So, we get to cut his Digoxin in half (that's the med he was put on to help with his heart function post-Glenn), and, as long as his next echo looks ok, we'll be able to come off of it entirely. GREAT news! (We always love appointments where we get to come down on meds.) Thank you so much for your prayers for a great appointment!

(In honor of our good news, Bodie decided to have a celebration of sorts this evening, by having the biggest blow-out diaper I have ever seen a child have (I had to call in reinforcements (aka Daddy) to help me handle the damage - the only time I've ever had to do that with 2 kids!) - turns out, for those of you who might need to file this away for future reference, antibiotics and prunes don't go so well together. ;-))

We came home from the appointment to a lovely surprise. My friend Amanda, who makes the cutest hats on the planet (she made the pink one Sierra's wearing in the picture on the right of the blog, and the blue one Bodie's wearing at the top), had made Bodie a new hat!!! (His noggin was outgrowing his old hat, so the timing was PERFECT!). Thank you Amanda! (Check out her blog Pardon my Chaos to see her amazing talents at work.)

Bodie modeled the hat (seriously - how cute is this thing???)...
for a second...

before deciding he's not quite as fond of it as Mommy...
Can you just see that look of pure victory? LOVE this kid...

Life on the normal track

Is everyone else as exhausted as we are in the Bennett household???

What a whirlwind weekend we have had! It's definitely that time of year - and we are so blessed to be healthy and past surgeries for the moment so we can really enjoy it!!! We started off the weekend with a very special mommy/Sierra date - a princess themed birthday party for one of her little friends at school, Riley. (Daddy stayed home with Bodie - no boys allowed!) The party was so fun - the little girls dressed in princess outfits and got manicures and pedicures, and then had crepes next door. Truly, nothing cuter than a gaggle of 3 and 4 year olds running around in princess costumes hopped up on sugar. :-)

Then, Saturday night, we had our annual Thanksgiving potluck at church - such a fun evening. Sierra had so much fun with all of her little friends and Bodie had a great time as well. We handed him a dinner roll as big as his hand early in the evening and he was content to munch on it most of the night. In fact, he even got into the festivities so much, he thought he'd try Dusk's mashed potatoes, a paper napkin (got really mad when I took that one away!) and my dessert. Oops. Apparently, the kid likes chocolate cake. (I'm guessing this one won't win me the mother of the year award). He stuck his hand right into my chocolate cake, to which I grabbed it out and completely cleaned it off. He looked right at me and shoved his hand right back in. Nice. My response the second time around? "Fine. Have at it." (Come on - like I was going to clean it off again 2 seconds after I had completely cleaned it? Even I have my limits.) He took the chunk in his little fist and chowed down on it. Not a gag in sight. It was actually a huge relief to me since, back when he was throwing up pretty much all finger foods, I was seriously worried that he might not get to have cake on his 1st birthday. Yes, nice to know that the completely-ridiculous-clearly-I-was-looking-for-something-new-to-worry-about fear can safely be laid to rest. :-)

Then, Sunday, I had the opportunity to go to a baby sprinkle for Townes's mom, Sara.
Did I mention this is Baby #5? (And yes, she makes it look so easy - she is amazing.) Baby is coming this Wednesday - so exciting! (If you could say a few extra prayers this week for a safe delivery, I'd really appreciate it!) And while I was at the sprinkle, Dusk got to be on Daddy duty with both Sierra and Bodie for the very first time. He did great - everyone survived, much to my relief! The only little hiccup? Eating, of course. Bodie is SO finicky that he's decided he only wants to eat for me...and apparently, he'll starve if he has to while he's waiting. ;-) Turkey. During the 3 hours that I was gone (over lunchtime), Bodie would typically have eaten at least one 4oz jar of baby food and a 5oz bottle of milk. What did he eat? In Daddy's words, "um...a couple mouthfuls of yogurt, some puffs and a little bit of milk. The kid didn't want to eat!" Within 30 minutes of me being home (during a time of day that he ordinarily doesn't eat much), he ate an entire jar of baby food and a full bottle of milk. Have I mentioned that he's a turkey??? The kid definitely knows what he wants and will stop at nothing to get it! (But we're ok with it, because we know his tenacity and stubbornness is what's gotten him this far!)

In Bodie news, he is doing fantastic with eating! He's now able to eat most crackers and breads (and apparently, chocolate cake) without gagging at all! PRAISE GOD! As far as his bottles, he didn't respond super favorably to weaning the thickener down. When we cut it in half, he really did a lot of gagging and coughing and refusing the bottle. So, we went back up a bit and he was much happier. We started at 1 packet of thickener to 4oz of milk (that's considered "full strength") and when we initially started weaning, we cut it in half, so 1 packet to 8oz of milk. I think it was just too big a jump for him at once. So, we split the difference and went to 1 packet to 6oz and he did great. I just changed it Friday to 1 packet to 7oz and so far he's tolerating it well. I think tomorrow or Tuesday, I'll probably switch to 1 packet to 8oz and try that again. I think he'll probably do a lot better this time around, just because it's been more gradual.

Breastfeeding? Um...let's just say that's probably not in the cards. I haven't been able to aggressively try yet since he's not down to thin liquids yet. But let me tell you, the few times I have tried have not given me much optimism. I was prepared for him not to know what to do. I was prepared for him to not be super excited. What I was not at all prepared for was his, well, visceral reaction! I had to double check to make sure I wasn't shooting razor blades out of my breasts. He literally screamed and kicked and clawed like I was poisoning him! Only one time did I have a nicer reaction, where he laughed at me, tried to latch on, made a face of complete disgust and then started blowing raspberries at me. Ah well, at least I tried!

In other Bodie news, please keep him in your prayers tomorrow. He seems pretty well past whatever was ailing him earlier this week, but he has his routine cardiology visit with an echo and ekg tomorrow. Although he has always had good appointments (other than his sats being low - but it's never been a surprise, since we have a home pulse ox), I have met other parents along this journey who do get surprise bad news at these appointments post-Glenn, where they suddenly find out their child is in extreme heart failure and transplant discussions are not far behind. So, I always go into these appointments with trepidation. Please pray that the appointment goes well (that they can get a good echo - although he's always been cooperative with echos, I have heard a number of stories lately of formerly cooperative kids being terrible about their echos post-Glenn) and that his heart function looks good enough that we can start talking about weaning him off the Digoxin!

Thanks as always for your prayers for our little hero!!!

Evening the score

Yesterday marked a BIG day for little Bodie. Not only was it his 9 month birthday, but it marked the day he had officially spent more time at HOME than in the HOSPITAL! Yep, that's right. Of the 273 days he has spent outside of my womb, as of yesterday, he had spent 136 of them at the hospital and 137 of them at home!!! PRAISE GOD! Wow...what a testament to the ridiculously rough start our sweet boy had in this life, right? And what a testament to the amazing healing power of God that, other than the 5 days for his bi-directional Glenn surgery, he hasn't spent any time in the hospital since his discharge in July!

So why am I updating today, instead of yesterday? Oh, I'm so glad you asked. Apparently, I talked too much about how excited I was that Bodie had hit the mark of spending more time at home than in the hospital and Bodie got wind of it and decided he needed to make sure he liked home better, because he earned himself a trip to the ER last night. That's right - in honor of our big accomplishment, we went back to the hospital. :-(

He has had a cough for the past couple of weeks, but because he's been satting fine and otherwise acting fine (other than occassional bouts of fussiness or not wanting to eat), we'd just been watching it. Then, Monday night, he came down with a low-grade fever, started getting ridiculously fussy and his sats started going bonkers - truly, all over the place. Uh oh. Then, he woke up and whimpered for 2 hours straight Monday night. Double uh oh. Off to the pediatrician's office we went. She took one look at the poor kid, who by then looked miserable and was having labored breathing, and immediately ordered a chest x-ray and a breathing treatment. The x-ray looked hazy and the treatment didn't seem to have much effect on his chest retractions, so she sent us to the CHLA ER. Dusk, who happened to be in the area, swung by and picked Sierra up while I headed to the ER with Bodie.

Honestly, I knew he was likely going to be admitted and was having a really hard time holding myself together. I knew intellectually it was the best thing for him - to get him checked out and treated, particularly if it was pneumonia. But emotionally, it was all I could do not to run back home with Bodie and Sierra and pretend nothing was wrong. I couldn't handle the thought of iv's and blood draws yet again for our sweet boy. You'd think each hospital visit would get easier, that you'd get jaded, but surprisingly, it doesn't get any easier. Sure the actual hospital stay does, once the reality sinks in and you're back there. But the shock of finding out we have to go back there hits me like a ton of bricks every time. Talk about some serious PTSD. For mama. Bodie? Did fine, like always. Was all smiles by the time we got to CHLA. Charmed the pants off everyone there. Had several docs tell me more than once that he was the cutest kid they'd ever seen (something about his great big goofy smile, I think). Actually literally squealed at the x-ray tech when we got in the room for the chest x-ray (yes, mama didn't bother to bring the chest x-ray from his pediatrician, so poor guy got 2 chest x-rays done within hours - oops). Not sure why he made the abrupt turnaround - we're thinking it was either the threat of a hospitalization or the breathing treatment. My money's on the breathing treatment.

In any case, his chest x-ray was indeed hazy, but apparently his baseline is hazy due to his pulmonary hypertension, so it was essentially unchanged from his x-ray post-op from his Glenn, so they weren't concerned. They also ran a vbg (blood gas) and everything came back perfect. Praise God! He was satting great the entire time we were there and showed no signs of labored breathing. I think the ER docs were probably inclined to keep him for observation (it's my experience that even the most experienced docs get a little concerned about a single ventricle kid with pulmonary hypertension, particularly if said kid is suffering from a respiratory infection of some sort). But they left the decision up to our cardiologist. I know we've mentioned before how much we LOVE Bodie's cardiologist, Dr. Nancy Kim. Well, we love her even more now (didn't even know it was possible to love her more than we already did!). The ER doc called her and since he wasn't showing any clinical symptoms of pneumonia, and she knew we would monitor him closely at home, she was fine sending us home! So, miracle of miracles, we got discharged from the ER last night!!! (Seriously, we were shocked - we had prepared for a stay. In fact, Dusk had gone home, packed me a bag and walked into the ER to deliver my bag literally as the doctor was telling us we could go home. Poor guy got stuck driving all the way up to CHLA for nothing - ah well, we'll take the good news!)

So, to make a long story, well, long (sorry!), we all ended up back under the same roof last night, with a good dose of antibiotics. We also added an inhaler to the mix this morning. And some combination of antibiotics and breathing treatments seem to be working for him, because he's now satting back in his baseline low to mid 80's and is happier than I've seen him in days. PRAISE GOD!!! I know we had A LOT of you praying and we know that's the only reason last night turned out the way it did. So THANK YOU!

(Oh, and in other good news, Bodie continues to climb the growth charts. At nine months, he's now 17lb6oz and 28in, for 7% weight and 49% length. Go Bodie!!!)

I guess Bodie decided home was better than the hospital after all. I could've told him that. Turkey. So, for today, we continue to have evened the score, with home now eeking out ahead by 2 days. Hoping and praying home wins by a landslide. :-)

Our hero

(Not sure if you can read the shirt - it says "Little Hero".)

We love you little man. Now that you're 8 weeks post-op, we can actually lift you up under the armpits (no longer a risk of injuring the sternum). And that means you want to stand All. The. Time. And you are SO proud of yourself for doing it. Really stinking cute - and so fun to watch your strength increase by the day. You are SUCH a joy and we could not possibly love you more!

The thickening wean starts tomorrow (we've been out of town at my parents since last Thursday, so didn't want to change his feeds until we got back - didn't want to risk an adverse reaction far from home). Please be praying for Bodie, that he tolerates coming off the thickener.

Dawn of a new day

I seriously cannot believe I'm typing this, but BODIE PASSED HIS SWALLOW STUDY!!!

Say what?

Yes, for real - he passed it! What an unbelievable answer to prayer! I am still in total shock! THANK GOD!

So what exactly is a "swallow study" and what's the big deal with passing one? Oh, I'm so glad you asked. :-) I found a great description of a swallow study from the Children's Hospital of Boston's website:
A videofluoroscopic swallow study (also commonly referred to as modified barium swallow study) is an objective assessment of swallow function.
How is the test performed?
The child is seen in radiology in conjunction with both a pediatric radiologist and speech language pathologist with specialized training in pediatric dysphagia. The parent remains with the child in the radiology suite.
What happens during the study?
The child is positioned in a typical feeding position consistent with their age and development. They are given a variety of food consistencies (thin liquid, thick liquid, puree, soft solid, hard solid) injected with barium. The study assesses all 3 phases of the swallow from the oral preparatory phase, oral initiation phase and the pharyngeal phase.
Why is the study conducted?
The purpose of this test is to assess for aspiration (food/liquid entering the trachea) from above with oral feeding.
What happens after the study is complete?
Results of the test are given to the family immediately upon completion of the test. The family is given specific instructions on what diet level and textures are safest for their child, what diet consistencies to avoid and when supplemental (NG-tube/ g-tube) feedings may be necessary.

Bodie had his first swallow study done at about a month old, during which he took thickened liquids just fine, but immediately aspirated the thin breastmilk. At the time, they recommended a repeat swallow study no sooner than 3-6 months. We finally had the repeat study done this morning.

Because Bodie is still coughing a fair amount from time to time (and throws up sometimes), we didn't expect to see much improvement from the swallow study (particularly because his scope 2 weeks ago still showed very minimal left vocal cord movement - the vocal cords are what prevent aspiration). But, lo and behold, not only did Bodie do great on the solids and the thickened breastmilk, but he also did just fine on the thin breastmilk!!! Seriously, I did not expect such great news. PRAISE GOD!!!!!

So what does this mean??? Most importantly, it means Bodie will no longer have to have thickened feeds!!! Presently, we thicken all of his bottles (we add one packet of nectar thickener to every 4oz of breastmilk) and meds (we more or less eyeball this one). But the OT today thought he would do absolutely fine if we stopped thickening! I think we will probably do 1/2 thickened for a week or so (1/2 a packet to every 4oz of breastmilk) and then stop the thickening entirely. It's really more for our peace of mind than anything - the OT thought he'd probably be fine stopping cold turkey. But we'd like to let him adjust - and given that he's been on thickened feeds for almost his entire life now, there's no hurry to rush him off if we can make it a bit easier to adjust. The OT told us to expect him to cough a lot as he adjusts (think of it like you've been drinking thick milkshakes your whole life and someone hands you thin milk without telling you that's what it is - it's going to take a while to adjust how hard you suck to drink it).

This will be SO MUCH better for Bodie. Most days, he drinks between 24 and 28 ounces of thickened breastmilk (with 10-15 ounces of solids on top of that) and a fair amount of that is thickener. It's not bad for him per se, but it's taking up empty space with no nutritional function essentially. It will be nice for him to get more bang for his buck with his bottles and hopefully gain weight even a little easier.

It also means that I could try to breastfeed him. I know, it sounds crazy, right? I mean, who seriously tries to breastfeed an 8 month old whose been bottlefed his whole life? Well, me. I absolutely intend to try. You never know - it's pretty much unheard of for a baby that old to take to breastfeeding, but that doesn't mean we won't try. One of my big sadnesses has been not being able to breastfeed Bodie. And you guys know me - when have I ever been afraid of a challenge? If you wouldn't mind being in prayer about that, I'd really appreciate it!

Thank you SO MUCH for all of your prayers for Bodie's vocal cords. Clearly, they have worked !Please, please keep them coming as we wean him off the thickener and pray that all goes well. We could not be prouder of our little guy. And if you need reason to be proud along with us, take a look at this pic, taken right around the time of his first swallow study. He has come so very, very far. :-)

Thanks!

Amy

Big day for the Bennetts

Bodie had a BIG day yesterday. In addition to celebrating his first Halloween, he took a huge step forward in his eating. Although Bodie has been doing great with his thickened bottles and all types and consistencies of baby food, we had really been struggling with the "finger food." He loves to eat and always wants to put whatever we're eating into his mouth. I've tried on several occassions to give him really small bites of bread or cereal and each time, he puts it in his mouth with a huge grin and "chews" it (mostly just gums it and pushes it around). But when it comes time to swallow, he gags and throws up every single time. Yes, it's gross, but honestly, he's just a thrower upper, so that part doesn't bother me that much - we're just sorta used to it. But what bothered me was that we didn't know WHY he was doing that. I didn't think it was a sensory issue, since he didn't have any aversions to chewing the food or having it in his mouth in general. Another heart mom suggested that maybe it was an overactive gag reflex due to the number of times he's been intubated. I think that's probably a very good possible explanation.

Anyway, up until yesterday, the only thing I could get him to eat without throwing up was Puffs. But I keep trying anyway, figuring eventually we'll get there. Well, yesterday, I decided to bite the bullet and try again with Cheerios. I braced for the worst. BUT he did it!!! He ate 15 cheerios in a row without so much as a gag! I was thrilled!!! He did the same thing again today, so I know it wasn't just a fluke!

It's really a huge milestone for us because it gives us such hope that eventually we can get past whatever it is that's causing this and eventually he'll eat regular food. It's so true when they say that, with these heart kiddos, you really don't take anything for granted.

And in other big Bodie news, he started waving today!!! It's a very short wave, but it's definitely a wave and it's so cute!

Please keep Bodie in your prayers on Wednesday, as he's having a repeat swallow study. They scoped him at his ENT appointment a week ago Friday, and it showed "minimal" left vocal cord movement. Bummer. :-( We don't know if there has actually been any improvement, since "minimal" is pretty subjective and depends on who is scoping him. His first scope was done by a different team at CHLA - oh, and we can't actually get our hands on that original scope, so we don't know what it said. So, the ENT decided just to order another swallow study to see what we'd find out. There's a big part of me that's scared to death that he's silently aspirating and we just don't know it. I know logically that's not happening since he's been eating for 8 months now with no signs of aspiration (if he was aspirating, it would be 100% clear by low sats corresponding to feeds, which he just doesn't have), but I think I was just so traumatized by his first swallow study) that this week's study has me pretty spooked. Please pray for good results on Wednesday's swallow study. Thanks! :-)

Oh, and because it wouldn't be a Bodie update without a picture, here's one of Bodie last night. We went trick or treating with Sierra's BFF Sofia and her mom Val and dad Rik. Bodie didn't last too long before he was annoyed and wanted OUT of the sling. So, Dusk took him home and they handed out candy to trick or treaters while we finished up. When I got home, this is what I found - bunny rabbit in an exersaucer by the front door. Too freaking cute.

Happy Halloween!

Happy Halloween from the Bennetts!

To celebrate, Sierra had a fun party at her preschool and we took both kids to the Harvest Party at the Calvary Chapel in South Bay. Sierra had a blast (especially since we went with her BFF Sofia and Sofia's awesome mommy Val) and Bodie, well, since we brought along his carrots, he was pretty ok with it, too.

Sierra, the cutest little bumblebee ever:

Sierra and her BFF Sofia:

Bodie, the cutest little bunny rabbit ever:
(This was actually Sierra's first Halloween costume - almost can't tell them apart - this was Sierra in 2007):

Tonight, we'll take the kids trick or treating for just a little bit and then stay home to hand out candy to the neighborhood cuties! Happy Halloween everyone!!!

October traditions

October is such a month of fun family traditions at the Bennetts. After months of skipping holidays (Dusk and my birthday to name a few) and spending so many of them in the hospital (Mother's Day, Father's Day, Memorial Day, 4th of July), it's blissfully exciting for Bodie to be in such a stable place that we can get back to some of our favorite traditions. Praise God for that!!!

One of our favorite October traditions is going up to my parents' house (Gigi and Popo) on the Central Coast to pick out pumpkins and go to a Cal Poly football game. This year, we took both kids to Avila Valley Farms to feed animals and pick pumpkins, but opted to let Sierra do a date night with Gigi and Popo at the football game and keep Bodie home. (We just didn't like the idea of having Bodie in such a large crowd just yet, especially since it was Poly's Homecoming.) Then we went to my parents church on Sunday before leaving town - it was so neat to be able to show Bodie off to all of his prayer warriors and especially to thank them for their continued prayers. The weekend was wonderful - SO MUCH FUN! Lots of pictures to share...

Popo goofing off with Sierra and Bodie:

Gigi and Bodie:
Sierra getting some Gigi time:
The whole fam at the pumpkin patch:
Sierra with Popo (2 of my all time favorite Sierra and Popo pics):
Sierra on her date with Gigi and Popo (the Cal Poly football game) complete with pom poms and kettle corn:
How did Bodie like his "Date Night" with mommy and daddy? We'll let you decide that one...
Bodie decked out in his church duds for Gigi and Popo's church, sporting the sweater vest of course:

Dusk, Sierra and Bodie on a pit stop on the way home from Gigi and Popo's (don't know who was more excited to be out of the car, Daddy, Sierra or Bodie!):

Halloween pics to come, but I figured this was enough pictures for one entry! :-) Hope you're enjoying October as much as our family is!

Absolute Inspiration

Watch. Smile. Cry a little. Hope along with us that this will be Bodie someday. So much hope for CHD children these days. PRAISE GOD for this hope!

The space between us

As I mentioned in yesterday's post, Bodie, Dusk and I had a wonderful opportunity to meet up with one of my heart sisters, Cindy, this past weekend. What I didn't mention was how bittersweet that meeting was. So sweet, so very, very sweet, to see Cindy again, to feel that instant bond with her, the love that flows freely between our hearts. But so, bitter, so very, very, painfully bitter to feel the space between us. The space that should have been filled with 2 boys fighting to get off their mama's laps, 2 boys trying to open Puff's containers with their mouths and giving everyone around silly, goofy grins. The space that instead was only shared by my sweet boy and the memory of the one who left before him. The space that will never be filled.

Oh, the aching sadness to think of how things should have been. Bodie and Isaac are such brothers, not just brothers in Christ, but heart brothers as well. They were from the start, well, actually, from before the start. A few weeks before Bodie was born, my mom heard about a fundraiser being held in Santa Maria for a baby boy named Isaac, who would be having multiple heart surgeries down at Children's Hospital Los Angeles. Like my mom does, bless her heart, she held on to the story and wouldn't stop talking about how neat it would be if I met Isaac's mom and dad. To be honest, I had a lot of other things on my mind and couldn't really have cared less who I did or didn't meet once my baby was born. God had other ideas. He knew I would need Cindy.

After Bodie's Norwood surgery, he was moved into a 4 bed room and the baby diagonally across from him was named Isaac. I pointed out the sign to my mom, laughingly saying that must have been her Isaac. Of course my mom immediately ran over to the young mother sitting beside the baby's bed to see if it was the same Isaac she had heard about on the radio. Indeed it was. THANK GOD my mom is a crazy friendly person, because I honestly wouldn't have done that. Cindy came over to talk to me and a friendship was born. Day in and day out in that room, we would talk and swap stories.

Then, Bodie was moved to the 3 bed room next store, and sure enough, Isaac came over too. What fun! The boys used to give nurse Alex a run for his money - poor Alex was relatively new at the whole icu nursing thing and would always get the boys paired and I swear, Bodie would wait until Isaac was crying for a diaper change and would immediately pee or poop, too. Alex would just be exhausted from taking care of both boys all day!

Then, Bodie was moved to the step-down unit and low and behold, Isaac was moved just a few hours later - and they both came to the same room!!! Isaac and Bodie were across from each other for the remainder of Bodie's stays. It was so wonderful to have a partner in Cindy. Sometimes (ok, a lot of the time - it's the step down unit floor after all) the nurses would get so busy with the patients that they wouldn't have the time to call a parent if something happened and the parent was away from the bedside. So it was such a blessing for Cindy and I to have one another - I could text her if she happened to have headed over to the Ronald McDonald house to catch some sleep and let her know Isaac was having a rough night and she might want to come back. Or she could text me to let me know that all of the nurses were huddled around Bodie's bed because he was desatting and misbehaving again. It just made the being in the hospital thing so much easier.

A week or two after Bodie was discharged, Isaac got to go home, too! He had a slightly less tumultuous next few months, enjoying being at home with his amazing mother Cindy, dad Jeff and big brothers Michael, Evan and Caleb. Since Bodie was in the hospital so much of that time, I was able to see Cindy and Jeff when they would bring Isaac down for various appointments at CHLA. Cindy and I had such big dreams for playdates with the boys once they were finally out of the hospital at the same time.

That never happened. Bodie's and Isaac's stories were intertwined from before the beginning, and the end was no exception. The day Bodie was discharged from the hospital in July, as we were driving home from the hospital, I got a text from Cindy that Isaac had been called home to Jesus. His little body had fought a horrible virus and just couldn't fight any longer. Oh how very bittersweet. On the same day my little boy was finally going home, his heart brother Isaac was going HOME.

And there we sat Saturday afternoon, Dusk, Cindy, Bodie and I, with a space large enough between us to acommodate a football field of little boys. But it only needed to hold one. Sweet, sweet Isaac. We so wish it could have been different. We will miss you forever Isaac and you will never be forgotten. We cannot wait for the playdates in Heaven someday. Love you Isaac.

- Amy and Bodie

Sisters by Heart

This weekend, Bodie, Dusk and I had the privilege of seeing one of my most special fellow heart moms, Cindy, whose sweet angel Isaac was Bodie's roommate following his Norwood. Cindy and I became so close as our boys were roommates for pretty much Bodie's entire 5 week stay at Children's after his Norwood. Cindy gave me a beautiful Willow Tree angel called "Sisters by Heart" and the description is "Celebrating a treasured friendship of sharing and understanding." Wow. There is no better way to describe my relationships with my fellow heart moms. These brave women understand. They've been there. They've faced the same, unmentionable fears that I've faced. They've cried the same tears that I've cried, as they've watched their sweet babies in pain, with countless tubes and wires. They've pleaded with God to save their child. They've experienced the same incredible joy I've felt when their child has turned a corner and started really progressing...and the same frustration, disappointment and fear when the child turned right around and started regressing again. 2 steps forward...1...or 2...or 3 steps back is the heart mother's mantra. They've wondered, in their darkest hour whether they will outlive their child, whether they're allowed to have hopes and dreams for their child. No one can understand like these women can. So tonight, I salute these incredible women. I can only hope I can show the same encouragement, love and steadfastness for my heart warrior that they have shown for theirs.

The heart moms I've met in person and had the privilege to walk alongside. I've grown to love their children as much as my own...

Cindy and sweet angel Isaac (Trunctus Arteriosis)

Dana, beautiful mama to feisty Addie (ALCAPA - Anonymous Left Coronary Artery)

I remember the night Addie was admitted to the hospital. She was admitted to 6west (the general cardiac floor) into the telemetry room (4 beds). Poor Dana was beside herself (Addie had not been diagnosed prenatally and was suddenly diagnosed at around 6 months of age and hospitalized pending almost immediate surgery) and Addie ended up rooming with Isaac and Bodie. It was really late at night, and Cindy and I were pretty punchy to put it mildly. At that point, our boys had been roommates for almost a month at CHLA and we were just over the whole experience. We were just cracking ourselves up over stuff that really probably wasn't even remotely funny but, well, you do what you have to do to cope. I distinctly remember telling Dana that Addie wouldn't have to be there forever because "well, they have to send you home sometime right? Right, Cindy? Eventually they'll find an excuse to kick our boys out of here, right?" and telling her what a great roommate Bodie was because he couldn't make any noise due to his vocal cord paresis. I just remember Cindy and I laughing so hard over that. I'm sure Dana thought we were crazy, but we were coping the only way we could. About a month later, upon Bodie's readmission, I met Dana again in the CTICU and a true friendship was born. Dana and I continued to see one other over the next few months as Addie milked her time in the cticu with all she had and Bodie continued to float in and out of the CTICU like they were giving away free candy. Dana is incredibly strong and has such a sweet spirit. I feel SO lucky to have met her and am still looking forward to our first playdate outside of the hospital.

Lucy, light-filled mama to sweet Babs (valve repair/replacement)

Barbara Ann, better known as "Babs," was Bodie's roommate after his Norwood. Lucy and her husband Tommy were there all the time. It was always so comforting to see one or the other there at her bedside every time I walked in to the room. During one of our many conversations, we learned that not only did we share a cardiologist (the amazing Dr. Nancy Kim), but we also shared a gynecologist (Dr. Taz Varkey, who saw me through both the pregnancy of the baby we lost last year, but also the beginning of my pregnancy with Bodie). I loved Lucy right away - she shared our faith values, and just had such an amazing positive spirit.

Jean-Marie, bubbly mama to handsome little dude Liam (Tetralogy of Fallot)

Liam was Bodie's very first roommate. They both had their surgeries the same day as well as their chest closures. Let me tell you, Liam is one strong little dude, totally on the fast track. He was there it felt like 2 seconds, and then bam, was extubated, then eating, then upstairs and then home! Jean-Marie and I bonded almost immediately - I think it had something to do with trying to figure out pumping and walking and standing all while recovering from a c-section. I can remember going over to one another's beds to check on the progress of our kiddos. I distinctly remember one nurse telling me we weren't supposed to talk to other parents or "compare" progress of our kiddos. So maybe she probably was right - there was a teensy bit of jealousy on my part when Jean-Marie was holding Liam and giving him a bottle and Bodie was still completely intubated with no hope of extubation any time soon. ;-) But whatever - we totally ignored the rule and bonded anyway. Gotta love a fellow rulebreaker, especially one as sweet as Jean-Marie!

Sara, advocate mama to hero Townes (HLHS) (http://www.caringbridge.org/visit/townsendhale)

Oh I think you all know how I feel about Sara. She, and her entire family, have literally been our lifeline again and again throughout this whole process. She and I met through the California Heart Connection when I was 7 months pregnant with Bodie and a lifelong friendship was born. The Hale Family lives in El Segundo (less than 10 minutes away from us), Townes and Bodie have had all of their surgeries done by Dr. Starnes at CHLA and our little guys had their last surgeries on the same day (we actually carpooled up a few days when they were in the cticu together). We LOVE Sara. Enough said.

And thank God for the internet, for Facebook and the blogging community. Because of it, I've been able to meet so many other HLHS families and bond with heart moms whose kids are also on this same crazy and uncertain journey that our sweet Bodie is on. It seems crazy to say I love these women I've never actually met in person, but I do. I feel like I know them - we've rejoiced in our kids triumphs together and cried over their struggles together. I am forever indebted to these women:

Jenny, sweet mama to miracle Aly Jean (HLHS) (http://jennyandjeremylincoln.blogspot.com/)

Jessica, strong mama to miracle boy Paxton (HLHS)

Kathy, unbelievable CHD avocate mama to chubster Jake (HLHS) (http://jacobsspecialheart.blogspot.com/)

Nicole, inspiring mama to the amazing Travis (HLHS) (http://dicarlofamilyupdates.blogspot.com/)

Stacey, amazing-writer mama to beautiful princess Zoe (http://thelihns.blogspot.com/)

Sigh...there are SO many other heart moms I'd like to include, but (i) it's seriously getting late and I still have to pump and do meds and (ii) most of the other moms I looked up didn't have any pics of themselves with their heart kids on either their blog or Facebook page (seriously, heart moms - get out from behind the camera and show us your lovely faces!!!)

A special tribute to 2 heart mamas who I met recently whose journeys with their special heart babies had barely begun before God called their special boys home. Please say a special prayer for these beautiful heart mamas missing their angels tonight...

Lauren, mama to sweet Angel Caleb (http://calebsheartstory.blogspot.com/)

Jill, fighter mama to warrior angel Joshua (http://fierceandfiesty.blogspot.com/)
And finally, a special tribute to a sweet fighter who lost his battle with HLHS earlier this summer...

Miranda, warrior mama to incredible fighter Wyatt

I always felt a special bond with Miranda and Wyatt, I think because I followed Wyatt's journey from when Miranda and I were both pregnant together and our boys were only born a week apart. I am still at a loss over sweet Wyatt's passing and have to honestly tell you that I cried when I pulled his pictures up to find a picture of he and Miranda together.

Fly high sweet angels. Comfort your amazing mommies tonight.