Monday, August 30, 2010

Big man in the big desert

After getting the all clear from Bodie's cardiologist on Friday, we were packing our bags for Palm Springs faster than you can say "are you crazy to travel with a hypoplast???" My parents have a place in Palm Springs (less than 2 hours from Bodie's hospital in case anyone was wondering!) and we have been anxious to get out there one more time before summer ended, so this weekend seemed like the best time to do it. We had a wonderful time! I do have to admit, it was our first time traveling as a family of 4 and let me tell you, it's a whole different ballgame than traveling with just one kid. Adding a second kid, who travels with a pulse ox, a scale, frozen breastmilk, formula, thickener and 6 different meds in 9 different syringes (not to mention the normal baby stuff) makes for a crazy trip. It will definitely take some getting used to, that's for sure! But it was a great weekend, with fun had by all, so we'll definitely take it!!!

Here's some pics of the fun...

All packed and ready to go

Aren't these eyes to die for??? (Have to click on the pic to see them up close)

Pretty big sissie with her dolly

Big sissie "modeling"

"Stick em up" (btw, this lovely overbite is his new look - it's what he does ALL THE TIME now -it's so funny)

The kid loved the pool

He was so proud of himself riding in the "boy big" stroller
So, I changed his diaper on the floor and left the room to throw the diaper out. This is how I came back to find him 10 seconds later. Too freaking cute.
All kinds of silliness
Yep, I'd say the weekend did him in!

Friday, August 27, 2010

Uh, let's hope that red pen was an erasermate

Yeah that's right, I just used a totally 80's reference. Gosh, do they even sell erasable pens anymore? I remember being beyond excited when those things came out. But I digress. This post is NOT about the amazingness that is the Erasermate.

Sadly, it's about Bodie's surgery date being changed. We got a call today that Dr. Starnes actually isn't available Sept 30th, so they're bumping us to Oct 7th. Eeek - that puts us a little too close to cold and flu season for my liking. We're going to ask them to put us on the waitlist for any cancellations before then. If there aren't any, then Oct 7th it is...
Sent from my Verizon Wireless BlackBerry

Thursday, August 26, 2010

Circle that date in red

They're going to do WHAT to me??? And you're happy about this WHY?

Well, we have a surgery date...(drumroll please)...SEPTEMBER 30. I know, I know, more than a month away. (sigh). His surgeon was actually shooting for mid September, but his schedule was full, so our choices were really next Thursday or September 30. He felt that Bodie really truly is doing SO well right now that he didn't want to rush him to surgery if he didn't have to. His shunt is big enough that his sats should hold just fine until then, so it buys us some time. And Bodie has really been thriving at home, so he'd like to let him do that for a little longer before doing surgery. His thought is that Bodie had SUCH a rough go of it, his little body is really over the hump now and he's finally in a good growing stage right now, so he'd like to leave him there a little longer.

So there you have it. 5 weeks to worry, obsess and think of little else. Or, 5 weeks to pray, hope, rest in God's promises to get us through this and love on our little guy as much as possible. Um, I think we'll take the latter. :-)

Our appointment in general went great today. Everyone who saw Bodie was totally amazed at how well he's done at home, what a great eater he is, how big his cheeks are, how much more hair he has, etc. The nurses were absolutely thrilled that he had gained an average of 28 grams a day since he's been home. Um, hello people - you told me to shoot for him gaining 30 grams a day, so come hell or high water, the kid is going to gain close to that. I didn't know there was an option to not get close to that. What can I say? Thanks to my dad being in the military, I have an unhealthy fear of authority and do what I'm told. ;-)

And Bodie was happy to be there - smiling at just about everyone, which is always fun. He has such an adorable personality. It makes my heart smile everytime a stranger stops to tell me how cute he is (doesn't exactly make my heart smile if they try to touch him, but compliments I'll take any day)!

I'll provide more info about donating blood and/or platelets once we get closer, but for now, please just put September 30 on your calendar and spend some time (or a lot, if you have it!) in prayer for our little guy between now and then. Thanks!

Wednesday, August 25, 2010

Owner of some chubby thighs

HOLY COW! Did you hear what I've been up to lately???
Little man finally decided his teeth weren't bothering him anymore (at least for the time being), so has been doing a whole LOT of this lately:
As a result, we have lots to show for it:
Lots of hair growth:
And a serious double chin:

And even a little chunk on his thighs:
The kicker is that most of this new chunkiness has come in the last week, when he has been on breastmilk only (other than his cereal and solids - which he continues to love, by the way) (we usually fortify his breastmilk bottles to 27cal using formula to help him gain weight, but we had run out and I made the mistake of ordering from a company that took a week to get it to us - so we've been without it). Since he's been on breastmilk only, he's really upped his intake and has gained the same if not better than when we were adding formula. Go figure. If he keeps it up, guess I'll be talking to his cardiologist about backing off on the formula a bit (no sense in giving him the formula at such a high rate if he can grow on a lower amount). At any rate, the growth has been really exciting for us to see - it seems his face is getting chunkier literally by the day! Go Bodie!!!

Our pre-Glenn consult with the surgeon is tomorrow, so I'm sure I'll have an update tomorrow night. It's a funny place to be in. Bodie, even though he seems so robust and healthy, is really hemodynamically unstable and could go downhill very very very quickly, so we are so anxious to get him past the Glenn when he'll be SO much more stable. The mortality rates are also highest at the stage we're in right now. And most kids do really well with the Glenn - they call it the "drive-through surgery" since kids are usually out of the hospital in a fraction of the time they spent in the hospital after the Norwood. So, on the one hand, we would be thrilled for the surgeon to say "hey, guess what - we have an opening for next Monday. Let's put Bodie in there." But on the other hand, it is still open heart surgery and not all kids do well. I am daily thinking of sweet Wyatt, who never came home after his Glenn. We have no guarantee that Bodie will be one of the lucky ones who does really well and comes home. So, another part of us is hoping the surgeon will say "let's not rush it and give him a little more time to grow." The really tough reality of what we're going through is that it is always a possibility that the time we have with Bodie now may be the only time we ever get with him. And if we pushed him toward the surgery that might change all that, it would be very hard to live with. (Sorry if I'm rambling - a lot going through my mind right now.) So, what we'd really like prayer for tomorrow is:

1. The surgeon: please pray for wisdom, that he is able to determine the best time for Bodie to have his Glenn.

2. For Bodie's body: to continue to thrive until the time comes for his Glenn.

3. For Dusk and I: for patience to rely on God's plan and know that HE has Bodie (and our family) in the palm of His hand and the outcome of tomorrow's meeting will be exactly as He has ordained.



Tuesday, August 24, 2010

The Half a Heart that Changed our Family Forever (Bodie's Journey)

Every Heart Has a Story
A fellow heart mom created a special event for all of us - the "Every Heart Has a Story" event. It is a wonderful forum for heart moms to share our stories with each other and meet those with similar challenges, hopes and fears. For more details, click here.

I know many of you have heard our heart story already, but for those of you who haven’t, I wanted to share it…

On October 1, 2009, our world changed forever - the day we heard "your unborn baby has a congenital heart defect." Although we knew it was serious, it would take weeks and several more ultrasounds and fetal echoes before we would have a final diagnosis of Hypoplastic Left Heart Syndrome. Our sweet baby was to be born with half a heart.

We spent the next 4 months crying, pleading with God and praying for a miracle. We thought He would answer by healing our baby's heart before birth. But as God often does, he answered our prayer in another, much better, way. He gave us a little boy who would have more fight in him than we could ever imagine. A baby boy that would have not only half a heart, but odd genetic arrhythmias and a ridiculously slow resting heart rate to go along with it, but who would fight on and astonish everyone. A baby who would be a daily testimony to the amazing power of our Lord.

Our sweet boy, Bodie Isaac Bennett, was born on February 16, 2010 at a hefty 7lb13oz and 20.5in.

He had his first open heart surgery, the Norwood, on February 22, 2010.

He had a fairly rough recovery, spending 3 weeks in the CTICU and an additional 2 weeks on the step-down floor, before finally coming home at 5 weeks old. He had a paralyzed vocal cord but managed to take all of his feeds by mouth (they were thickened), to the utter astonishment of all of his doctors and nurses. He also had an unexplained dependence on oxygen and was sent home on 1L of oxygen. Our life settled into a new "normal" between round the clock meds and oxygen.

3 weeks later, he became slightly lethargic during his feeds, so I took him to the ER just to get him checked out. Within an hour of being there, his oxygen sats had dropped so low they needed to “bag” him and send him directly to the CTICU. By the next day, he was satting in the 60's and they didn't know why, so they sent him for a cardiac catheterization. He coded on the table, and again once he got back to his room. We almost lost him that night, until an angel of a doctor stepped in and decided to put Bodie on an external pacemaker. Within an hour, he turned around. A week later, he had his second surgery, to install a permanent pacemaker and take down his sano shunt and give him a BT shunt. He came out of surgery in great shape and flew through recovery, coming home just 2 weeks later!

4 days after that, he was readmitted to the hospital with blood in his stool. During the week it took them to determine than it was c-diff (a nasty hospital-borne infection), he contracted parainfluenza from a roommate. We almost lost him a second time as he was rushed down to the cticu and intubated. Once they got him on the right antibiotics, he was able to be extubated and recovered nicely. He was moved to the step down floor and spent 30 hours there before being rushed back to the cticu again in critical condition. He was again intubated and given medical support as they determined that he had an infection in his blood which turned out to be MRSA. He then spent 6 weeks in the hospital on iv antibiotics (5 of those weeks were spent in the cticu as he needed a heart medicine, milrinone, due to the beating his heart took from all of the infections). The day he finished his antibiotics, he was discharged (July 21st)!

Bodie has been home since then and is thriving. He is gaining weight, growing teeth (and hair!) and LOVING life. He will have his next open heart surgery, the bi-directional Glenn, sometime in the next month to 2 months. After that, we hope to get a reprieve from hospital stays until the Fontan (sometime between 2 and 3 years old), the "final" surgery in the 3-stage palliative surgeries used to treat HLHS.
Our sweet fighter has had a rough road to be sure, but God has answered the prayers of so many faithful people who have been praying without ceasing for Bodie and our entire family. We could not be more blessed to have him in our life. He has taught us so much about strength and determination and willingness to live. And about taking life one day at a time and enjoying the small moments. He loves life. He has no idea life dealt him a bad hand. He was born with half a heart, yes. But twice the spirit. Twice the determination. Twice the love.

We love our little man and would walk this journey again in a heartbeat!

Big sister did great!

Sierra's surgery went great. Turns out she had a big ole cavity (and a couple smaller ones starting) not because of bad dental hygiene, but because for some reason her enamel didn't form correctly on her molars. The outside enamel was fine, but underneath the outer layer, it was just super soft, allowing a cavity to set in and grow super quickly. (huge sigh of relief for me that it wasn't MY fault!) Bad news is that the big one required a "baby root canal." So, she ended up with a root canal, a couple of small fillings and the rest of her molars were sealed.

The told me to expect her to sleep for a few hours and not want to eat for the rest of the day. Sierra? Not so much. She was pretty incoherent when we left the office, but once the sedation wore off, she immediately started complaining that she was hungry and thirsty. So I called and they said we could feed her. Now that she's eaten, it's like nothing has happened. Kids are crazy resilient. :-)

Thanks so much for the prayers - please pray that the rest of her pain is minimal as her body continues to recover!

Prayers for Big Sister

As much as Bodie would like to think he's the only game in town, we do sometimes need to ask for prayers for big sister, too. :-) This is one of those times. We found out a little over a month ago that Sierra had at least one deep cavity, possibly more (she's pretty skiddish about letting the dentist get a really good look at her mouth, so they don't know for sure). With kids like Sierra (little and not a particularly big fan of the dentist), they can't just numb the gum and fill the cavity. They actually have to put them under. So, in an hour and a half or so, they'll be putting her under, filling any cavities she has and sealing her molars. I know this is minor compared to what Bodie has been through, but it's still nervewracking and there's always risks associated with sedation. So please pray that all goes well this morning and she doesn't have any issues recovering later today. Please also pray that she's not in too much pain afterwards. Thanks!

Friday, August 20, 2010

Have you hugged your cardiologist today?

Bodie has. We're a fan of cardiologists lately, on account of them being in the business of saving Bodie's life on a fairly regular basis. But our favorite by far is Dr. Nancy Kim, Bodie's regular cardiologist. We LOVE Dr. Kim.

The day we found out Bodie had a heart defect, (I was about 17 weeks or so pregnant), the tech left the room and the perinatalogist came in with 2 other fellows. They were very solemn and spent a lot of time looking at the heart. That's when I knew something was wrong. Then the perinatologist spent a lot of time talking about the grim diagnosis, poor quality of life, in uterine demise and possibility of termination. It was all a blur, and honestly all I can truly remember thinking is that I was going to lose 2 babies in one year (for those of you who don't know, we lost a baby with down syndrome and a cystic hygroma when I was 3 1/2 months pregnant in March of 2009, 3 months before we got pregnant with Bodie).

The perinatologist said that a pediatric cardiologist with a specialist in fetal echocardiography was in the office on Thursdays (my ultrasound was on a Thursday) and he wanted her to take a look just to make sure. Enter Dr. Kim - the FIRST person to give us any hope that our baby might be ok. She didn't downplay the severity of Bodie's heart condition, but she told me that there was HOPE, that it was a rough road, but that she had children in her practice with HLHS who were thriving. She just said we would get through it together if that's what we wanted to do. And a beautiful relationship was born.

I continued to see her throughout my pregnancy and at every ultrasound when I would ask her if she happened to find a left ventricle yet, she would just laugh and say no, but that I should keep hoping. :-) She was always so upbeat that she made a really trying and scary experience as fun as possible. And she is now Bodie's cardiologist. We're so excited Bodie has been out of the hospital long enough to finally get to know Dr. Kim. He sees Dr. Kim on a weekly basis, and has ekg's and echocardiograms done every other week.

Today, he had an ekg and echo and both looked great - unchanged, which is exactly what we wanted (barring the miracle of finding a fully functioning left ventricle, of course!). He is a beefy 13lb8oz now and grew another 1/2in, so is 26in long (that's our long skinny guy)! Since his eating has been so sporadic due to the teething, I was thrilled that he'd gained weight. And he was all smiles, as you can see.

Next Thursday is our pre-Glenn consult with Bodie's surgeon. Please pray that all goes well. Also, Dusk has caught a cold - please pray that he recovers quickly and doesn't transfer it to any of the rest of us, least of all Bodie!

Wednesday, August 18, 2010

Our "other" hero

We always call Bodie our hero, but truthfully, we have several other heroes in the heart community as well, and this little guy is one of our biggest. His name is Townsend Hale, he's almost 21 months old and he has the same heart condition Bodie does. He's had his first 2 surgeries done and, because he's such a little chunker, his final surgery (the Fontan) is scheduled for September 13 (so who knows? we could end up being at CHLA at the same time). He's had his surgeries done at CHLA by the same surgeon who has operated on Bodie, Dr. Starnes. He is our INSPIRATION. As you can see, he's doing great and thriving (you would never know this adorable, chunky, picture-of-health kid has half a heart, right?). And, he's also really blonde, so our goal is for Bodie to look exactly like him in 15 months or so.

One of the best things about Townes is that his awesome family lives in El Segundo, less than 10 minutes away from us! I met his incredible mom, Sara, through the California Heart Connection, when I was still pregnant with Bodie. She is like the sister I never had. She and her entire family (her husband Aaron and their kids Owen (7), Max (5), Evelyn (3), Townes (21 months) and baby on the way!) just opened their arms and hearts to us. A HUGE props to the entire Hale family for doing more for our family in the past 6 months than we can even begin to thank them for. They brought us countless dinners and snacks, brought gifts for Sierra, visited us in the hospital (Sara even sat with Bodie so I could run home for a bit), and perhaps most of all, took Sierra for us when she could no longer go to her school. I honestly keep expecting to find out that Sara is an angel sent to help our family in a dire time of need. But until that time, we'll just keep enjoying the wonderfulness that is the Hale family.

And a few pics of our Heroes at the park today (we are lucky enough to see the Hale family on just about a weekly basis now that Bodie is home):
Townes with big brother Max, big sister Evelyn (who is 2 months older than Sierra and so much like her - the girls get along SO well - it truly is such a blessing) and mom Sara:

Monday, August 16, 2010

Happy 6 months our little hero

You are 6 months old today our sweet little fighter! Oh Bodie, we are so proud of you. 10 months ago, our world was forever changed when we heard the words "your child has a severe congenital heart defect." We spent 4 months crying, worrying, pleading with God to give us a miracle. And 6 months ago, he did. He gave us you. Our little warrior. 6 months ago, he brought you into the world, blue, quiet and pretty unhappy to be out of your mommy. Not that we can blame you. It's as if you knew what you were up against and didn't want any part of it. Again, not that we can blame you.

You have taught us so much about strength, determination and the gift that life is during the past 6 months. 6 months ago, we could never have guessed that our path would be this tumultuous, this difficult, this frightening, this fraught with heart stopping moments. BUT, we also could never have guessed it would bring such joy, such beauty, such gratefulness and love. You are a WARRIOR. You are such a STRONG little man. And most amazing of all, amidst everything, and against all odds, you are FULL OF JOY. You remind us every day of God's blessings...of the miracle of life. We could not be prouder of you, of your sweet radiant disposition and your lion's strength and will to fight. Today, we celebrate you, sweet boy.

Of the 181 days we've been blessed to have you here on earth with us, you have spent 95 of them in an Intensive Care Unit, 36 of them in a step-down unit and 50 of them here at home with us. You've cost our insurance company upwards of 3/4 of a million dollars (not to mention the other half a million that the hospital absorbed). You've had 2 open-heart surgeries, 2 cardiac catheterizations and more pokes, prods, lines placed and needle sticks than we can even count. We've almost lost you 4 times and each of those 4 times will haunt my memories forever.

But you? You don't care. Somehow, you don't even realize that life has dealt you a bad hand. To look at you, you'd never know all that you have been through. You are just like any other 6 month old. Silly, sweet and so stinking smiley. You hear your mommy or daddy's voice and turn and immediately start smiling. You seek out your sister from across the room and your entire face lights up. You are beyond ticklish and LOVE it when mommy tickles your tummy. You blow raspberries with wild abandon. You eat us out of house and home just trying to put fat rolls on your cute little thighs (and you're almost there). You are amazing. You are our miracle. And we couldn't possibly be prouder of you and more grateful to God for the last 6 months. We are so privileged to call you our son.

Fight on our sweet little hero.

We love you,
Mommy and Daddy

Wednesday, August 11, 2010

Surgery, surgery, and more surgery

Well, surgery is the subject today for sure. In good news, BOTH of Bodie's heart buddies who had their Glenn's last Thursday are already home! (Seriously - Olivia was discharged Monday and Jacob was discharged this morning - less than a week after open heart surgery! How amazing is that??? Gives us such hope for Bodie's Glenn as well.) They're both dealing with the dreaded Glenn headaches, but other than that, really doing amazingly well. Praise God!

As far as Bodie's Glenn, we have our pre-Glenn surgical consult scheduled for August 26th!!! What does that mean? Honestly, nothing really, other than that at least they're thinking about when they'll do his Glenn. And that puts us one step closer, so we're happy about that. Won't know until then when his surgery will be, but my guess would be sometime in September. My hope is early September only because that gets us a little further away from cold and flu season than late September or October will. But, if Bodie's still doing well, they might push it off a bit further. (The bigger they are going into the Glenn, the better they tend to do.) We'll see.

Bodie is doing well, but the teething is really bad. He hasn't really wanted to eat much at all the past couple of days and it has had me unbelievably worried, really at my breaking point. He'll take maybe 1/3 of an ounce (if that) and then pull off the bottle, grab his gums and scream in absolute agony. We've tried everything (teething rings (he won't touch anything frozen, so that hasn't gone over too well), Baby Orajel, teething tablets, Motrin, Tylenol, even Hydrocodone - nothing has really touched it) - you'd think maybe it's not teething if nothing is working, but his symptoms are clearly, clearly teething. Yesterday morning, he got so upset he turned purple and screamed for 15 minutes straight. By the end of the episode, I was also sobbing for my mommy (if I'm being honest :-)). We're always in a state of worry about him, but when he doesn't eat or shows other worrisome signs, it ups my stress level to a really unhealthy level. (Clearly I need to work on giving that one over to God - but I'm only human, so that's taking some time. Could definitely use some prayer on this one!)

I took him yesterday to the pediatrician just to make sure nothing else was going on and she ruled out any ENT or other obvious infection. Of course, once we got to the office, Bodie was grinning and flirting at everyone in sight and downed 3.5oz without so much as a whimper. Then he did the same thing at CHLA when we went for his pacemaker check later in the afternoon. Turkey.

Today was a bit better - by this afternoon, he definitely started eating better, so we're hoping some of the pain is easing a bit. I suspect that more than one tooth must be brewing right under his left gumline for him to be in such unbelievable pain (either that or he's just a whiner, which is also a possibility ;-)). Please pray that he gets a serious reprieve from this teething and starts eating better - so that all of our stress levels go down!!!
The really good news is that, when he's not hungry or I'm not forcing a bottle down him, he's really pretty happy. He's been super smiley. I got my new camera and have been super picture happy so have some great new pics for you all:

Mr. Smileypants

Sister love

Showing off his new teeth

He is at SUCH a grabby phase. Has to grab EVERYTHING in sight (usually my hair!)

LOVING his exersaucer Our little California boy - on the swings again Lying on the blanket at Farmer's Market

Sunday, August 8, 2010

Made it through another weekend at home (but just barely)

Weekends are the hardest for me in terms of not completely freaking out and thinking we have to rush Bodie back to the ER. I'm sure it's because both times Bodie has been readmitted to the hospital, it's happened on the weekend - so I just get in a state of panic when Friday approaches and am on high alert all weekend long. Not an ideal way to live, but well, it's our new normal. I'm working on calming down more, but it will take time.

So this weekend, Bodie decided to add to my anxiety by actually getting himself worked up enough to warrant a trip to the ER. After a nice few days of reprieve from the teething, it has returned with a VENGEANCE. This morning was particularly rough, with Bodie pulling off the bottle and screaming as loud as he possibly could and grabbing his mouth after about 5cc's at a time of each feed. I was lucky to get in an entire ounce before he would just refuse it. He was in tears, I was in tears, Dusk was hiding from the both of us, Sierra was, actually I don't know where she was since I was too busy shoving the bottle into Bodie's mouth to pay attention to anything else - you get the picture. :-) If Bodie was a normal (heart healthy) kid, other than being really frustrating, it wouldn't be that big a deal - you'd just work through it as best you could until his appetite returned. But you can't do that with a single ventricle kid - they just don't have the reserves to deal with deydration or electrolyte imbalances caused by not feeding. So, if they're missing feedings, you have to intervene on some level. All I could think was that we were going to have to take him back to the hospital and they would of course admit him based on his history. And we'd be stuck back in the hospital for teething? Are you kidding me??? Now you see why I was crying right alongside Bodie. (I'm sure it was comical on some level to hear me threatening him saying "Bodie, I get that you're in pain. But you have to suck it up and eat anyway, because if you don't, we're going back to the hospital and what they'll do will be much more painful!!!" but it sure didn't seem comical to me at the time.)

After an extremely frustrating morning, alternating between Motrin and Tylenol (along with teething tablets) all day and adding in a few naps, we finally got things under control and he was feeding fine by the end of the day. We ended up getting his feeding goal in for the day (praise God for that one - I'm still not sure how it happened - oh wait, I do know - it was from me sitting on the couch with him for the better part of the day, shoving the bottle in his mouth against his will at every available opportunity...but I digress (such is the life of a heart mom)).

I'm not sure what tomorrow will bring - hopefully a reprieve again from the teething. If it doesn't, I'm going to call his cardiologist and see if we can give him some Tylenol with Codeine (we have some left over from his second surgery). Hoping she gives us the ok to do so if necessary. I don't want any more mornings like this one.

So, yes, we made it through another weekend at home...but just barely!

Oh, and just to assure you that the entire weekend wasn't spent in tears and panic, here's a few pics of Bodie enjoying Tigger along with Sierra (Tigger has been Sierra's lovey from the time she was about 8 months old and we bought a second one the exact same as the first so that we'd have it in case she ever lost the first. Of course, she wanted nothing to do with the second one - now Bodie has taken quite an interest in it. Go figure.). Sorry for the grainy quality of the pics lately - I dropped my camera and just bought a new one, but don't have it yet. So, cell phone will have to do for the time being!

Saturday, August 7, 2010

Fly High Sweet Baby Wyatt

Baby Wyatt earned his angel wings today. Fly high sweet Baby Wyatt. You fought such an amazing fight. We will all miss you and you will never be forgotten. I take solace is knowing that Wyatt is now with Jesus and Bodie has an amazing little guardian angel watching over him. Many, many, many prayers to Miranda and Ryan today.

Friday, August 6, 2010

A million thank-you's

Just wanted to share with all of you a letter I sent to the CTICU last week. Wanted to really acknowledge how hard they worked to help get Bodie better - and why we consider them famly. :-)

To the amazing doctors and nurses of the CHLA CTICU:

We just wanted to drop you a quick note (with pictures, of course!) to update you on Bodie. He is LOVING life on the outside! And we are loving having him home. Since he’s been home, he’s been gaining well, satting well in the 80’s, has stopped sweating and been impressing us all with how well he’s adjusted. (He’s now over 5.7 kilos, which was a huge step considering how hard you all worked with us to get him over 4.7!) He’s teething like nobody’s business and is fairly miserable because of that (had 2 teeth pop through just in the week we got home from the hospital) – but you all know how Bodie is. If there’s an easy way to do something, he’s not interested. He wants to do it the hardest way possible, so if that means having ALL of his teeth come through at once, so be it! (but if the worst thing we’re dealing with right now is teething, we’ll take it)

We wanted to let you know how special you all were to us during Bodie’s extended stays at CHLA. We know we will be back there soon for his Glenn (if not sooner) (don’t have a date yet, but we know Bodie will let us know when that time comes) and we are hoping this next stay is shorter than the last. But we’re really loving our time away for the moment. As we’ve had time away to reflect, we wanted to give a few special thank-you’s. I know it may seem weird to be doing this now, since we’ll be back again so soon, but we feel it’s never too soon to express our gratefulness to others in our life.

Dr. Starnes (Bodie's surgeon): thank you for operating on Bodie’s “bizarre” little heart more than once. We know Bodie is unique (we understand that’s the nice term) and we can never thank you enough for rising to the challenge each time in deciding how best to work with his little heart. You have given more to our family than you can even fathom.

Dr. Mormisato (Critical Care Attending and Head of CTICU): ah, Bodie has such a special relationship with you. You have had the unfortunate privilege of being there every time Bodie came in at his absolute worst, and you have always had the wisdom to treat him best so that his little body could bounce back at superhuman speed. We are so hopeful that Bodie’s days of coming to you at his worst are behind us.

Drs. Rivera (Critical Care Attending) and Bar-Cohen (Electropysiologist): you two will always hold a special place in our heart. You saved Bodie’s life, by piecing together a puzzle no one else had been able to: thinking to pace Bodie. And managing to keep me calm in the room when it happened. Enough said.

Dr. Wetzel (Cardiology Attending): thank you for pushing the envelope, and Bodie’s heart, to create a scenario I never thought possible. Because of your weaning the Milrinone when you did, and pushing Bodie, he’s now been home 2 weeks and really thriving. We don’t know how long we’ll have at home with him before the Glenn, but honestly, the little time we’ve already had has been more than worth it. This has been such a gift and we are so grateful.

Drs. Del Castillo, Epstein and Hastings (Critical Care Attendings): you three always took such wonderful care of Bodie and really involved us in his care and the decisions you were making for him. I always knew he was in good hands when any of you were on.

Dr. Badran (Cardiologist and Cath Lab Doctor): thank you for always taking such a personal interest in Bodie, and in keeping me involved in his treatment. I had always heard you were amazing in the cath lab, and after having you do Bodie’s cath, I understand why all of the parents rave about you. You really have a gift – not just to do caths extremely well, but to bring the parents in as well. You really educated me and I so appreciate that.

The incredible Nurse Practitioners (Carol, Caroline, Karen, Kirsty, Kristen and Lillian (hope I got you all!)): I think you all know how much we loved you (how could you not given that I was petitioning anyone who would listen to get Bodie on your service?). THANK YOU for always checking in on Bodie and making sure he was doing ok. He loves you all almost as much as we do. The continuity of care you provide to parents is unbelievable.

All of the nurses (I think Bodie had all of you at one point or another!!!), but especially Andrea (thank you for taking such amazing care of Bodie the weekend we went out of town – it was only because of your great updates that I was able to relax and enjoy time out of the CTICU), Sunita (I truly felt like Bodie could not have been in better hands at night – I think you felt like he wasn’t just our baby, but yours as well ), Rosie (oh boy, does Bodie love you – he would turn and start smiling at just the sound of your voice – that’s how we knew we had a great nurse!), and Thu, Sandra, Lucy and Amy (thank you not just for caring about Bodie, but our entire family (including big sister Sierra) as well).

I know there’s a million other people I’m leaving out (including all of the amazing fellows (especially Shek!) and cardiologists), but suffice it to say that the CTICU at CHLA is an incredible place. You’re in the business of making miracles happen, yes, but even more than that, you’re in the business of holding families together while they’re waiting on those miracles. Thank you for everything you have done for our family…and we’ll see you soon!

God’s Blessings and ours,
Amy, Dusk, Sierra & Bodie Bennett

Adventures in Solids

After enduring dirty looks during mealtime (at me) and big pleading eyes (at my food) for a few weeks now, I finally gave in and started Bodie on solids! As you can see, he was a-ok with that decision. He didn't quite know what to do with it (and was actually even more interested in eating his colorful bib), but he got the hang of it. For a first-timer, he did pretty well. And didn't cough once, which made mama feel really comfortable about her ability to decide what's thick enough for her guy.

Bodie also had a marathon appointment with his cardiologist today, which included an ekg and an echo. Everything looked stable and he had grown 4oz and 0.5in since last week's appointment! He's thisclose to 13 pounds now and hopefully within a couple of days he'll actually be there! (So yes, still small, but we're inching ever closer to the growth chart!) We have a pacemaker check with the electropysiologist next week and hopefully his pre-Glenn surgical consult within a week or two (just waiting for insurance authorization).

In news of amazing HLHS heroes, both Olivia and Jake did AWESOME with their Glenn's this week. Olivia has had a lot of tubes and wires removed already, and Jake is already going to be moved to the step-down floor tomorrow (yes, that's 2 days after his surgery!). Jake, like Bodie, had a lot of complications after his Norwood, so he gives us such hope that Bodie will also sail through his Glenn. Please continue to pray for both Olivia and Jake to sail through recovery and be home SOON! Please also continue to pray for sweet Wyatt, who is still struggling through his Glenn recovery.

And, one more pic for your viewing pleasure: Sissy love...

Wednesday, August 4, 2010

Update time

Just wanted to take a couple of minutes tonight to update on my recent prayer requests (I have been meaning to do it for days, but Bodie and Sierra keep me pretty busy during the days and I'm totally wiped out by bedtime to do it - sorry!). Anyway, here goes:

Bodie: Bodie seems to have gotten a bit of a reprieve from the teething the past couple of days, thank God! He's eating much better and has gained a bit of weight. Please pray he continues to feel better, eat well and gain weight. Please also continue to pray for his vocal cord paresis. Twice in the past week he has choked so badly on something he almost couldn't clear it. The first time was when I tried to give him Motrin. I didn't thicken it (I thicken everything I give him, but it looked thick enough so I didn't bother) and it went down the wrong way. He coughed and gagged so badly Dusk and I thought we were going to have to rush him to the ER. He managed to clear it, but it scared the heck out of us. Then last night he did it again in the bathtub. The only thing I can think is that he put the washcloth in his mouth and sucked the water out of it and choked on it. Crazy, right? Who would think you'd have to worry about that? Kind of blows your mind. Anyway, although some of the nerve damage appears to have reversed itself (he's making a lot more noise now), he clearly has a ways to go. PLEASE pray that his vocal cord will heal itself so that we don't have to worry about this anymore!!!

My mom Nancy: She came through her mascectomy with flying colors and was released less from the hospital less than 24 hours after surgery! (I know, I know, my mom is incredible - she has the MOST resilient body of anyone I have ever met!) She's doing well now, making sure to take it easy. The next couple of weeks are really critical in terms of not having post-surgery complications, so it's really important that she's as inactive as possible. Please pray for her to stay down and rest her body - and pray that her body will continue to heal quickly.

Dusk: Had his MRI last Friday, but we haven't heard back yet from his doctor. We're hoping no news is good news. Please pray that we get good news soon on that one.

Baby Wyatt: Wyatt is still marching on. Since I last posted, he had another surgery, where they took down his Glenn and put a BT shunt in (the same type of shunt Bodie now has), reverting him back to his Norwood physiology. The thought is that it's just too much for his body right now- they'll give his body a couple months to rest and then do his Glenn. Although his heart seems to be tolerating the surgeries ok, he has had numerous other complications, especially with his kidneys. They're just not working as well as they should be, so they put him on dialysis today. It seems to be helping. PLEASE pray hard for Wyatt, that his sweet little body can catch a break and he can start truly recovering and get home!

Baby Jacob: Jacob is having his Glenn surgery tomorrow morning at Children's Hospital of Philadelphia. All of his pre-op tests came back great, including his pulmonary consult! Praise God! He has some issues with a leftover atrial septum (something you don't want with HLHS, since you need a good size hole in your septum for the necessary blood flow to happen) that they will try to fix during his Glenn tomorrow, making it a slightly higher risk than most Glenn's. Pray for a successful surgery and a quick recovery for Jake.

Baby Olivia: Not an update, but a new HLHS buddy. She is also having her Glenn surgery tomorrow in Chicago. Please pray for a successful surgery and quick recovery for her as well.

Monday, August 2, 2010

A baby dedicated

On Sunday, July 25, we had Bodie dedicated. Our church (actually, the entire Evangelical Free denomination, I think) does adult baptisms and infant dedications. The reasoning is that adults are capable of making the decision to accept Jesus Christ as their lord and savior, and are baptized as an outward symbol of that inward decision. Children, by contrast, are not mature enough to make that kind of decision and so are "dedicated" instead, during a ceremony where the parents commit to raising their children in the Christian faith and the congregation stands alongside the parents. It's pretty cool.

Anyway, we finally had Bodie home long enough to get it done, and it was awesome! It was wonderful to be able to stand up in front of our church and all of those people who had been praying so faithfully for Bodie and our entire family during this time. Bodie is such a testament to God's faithfulness and power and we cherished the opportunity to share that.

Here are some pics taken by the amazing Brian Hawkins (