Tuesday, May 31, 2011

Bye, Bye Bottle

Last night I gave Bodie his last bottle. We are officially only on sippy-cup now. (I should mention that, as many times as I told him last night that it was his final bottle, he might still have something to say about it this morning. Ha!) He's been almost entirely on sippy-cup for some time now, only taking a couple of ounces from his bottle first thing in the morning and before bedtime, so I think he'll be fine moving completely to sippy cup now.

Yes, he'll be fine. It's mama I'm not so sure about. Wow. Giving him his last bottle was actually very emotional. I was looking at the bottle and the Nuk nipple that he likes, remembering back to when I gave him his very first bottle and he coughed and gagged and there was so much concern about him aspirating. I remembered how scared I was to feed him initially, that I had to hold him in the perfect position and help support his chin so he wouldn't tire out, how I insisted on having a therapist or nurse next to me my first few feeds because I was so uncertain about what I was doing. I remember how he had such disdain for the standard hospital nipples and insisted on only the Nuk nipples - how everyone said he couldn't do thickened feeds through a Nuk nipple, that he would have to work way too hard and it would just be too inefficient. But you know Bodie - he had to show them he could do things HIS way, right from the start. I swear, he hears those kind of comments as a challenge.

I remembered how the weekend nurse didn't realize he was only supposed to be able to take an ounce or two from the bottle - and she let him get up to full feeds within 2 days - and how ticked off his therapist was when she came in on Monday to realize he was already up to full feeds (that decision could have turned out very badly for Bodie - but luckily for us, it was the absolute right thing for him and is probably the only reason he ended up not needing a g-tube). I remembered how all of his nurses said they'd never had a cardiac kid who liked to eat as much as Bodie did. But mostly, I just remembered all the sweet cuddle time I have had feeding him. I know we'll get all of that with his sippy cup, but it's a bittersweet milestone for sure. My boy's not such a baby anymore.

Oh, and, for the record, we also ditched his thickener a few weeks ago!!! (I meant to write a blog post about that, but time just keeps slipping away from me these days.) That was a huge milestone for us - he was on thickener for the first 15 months of his life, so it was a big step to get rid of that stuff!

As if you needed proof, here's a few pics of our family this weekend out in the desert - doesn't he look like such a BOY, now???

Mr. Independent
My sweet girl
Hanging out with Uncle Bob who came out to visit us (I promise, Bodie didn't cry the entire time) Me with my loves


Wednesday, May 25, 2011

Boys will be boys

A couple of months ago, I had the pleasure of having the kids photographed as part of a CHLA fundraiser (my fellow heart mom Jean, has a sister-in-law (the amazing Amy Payne) who is a professional photographer and did a fundraiser as a part of "Heart Month" where a percentage of proceeds she earned during that month went to CHLA). I met Jean when Bodie was in the hospital recovering from his Norwood. Jean's son, Liam, has Tetrology and Fallot and had his surgery on the same day as Bodie's Norwood (same surgeon). They were roommates for a few days in the CTICU and then Liam was quickly on to bigger and better things. :-)

Anyway, she wanted to get the boys together for a photoshoot on the one-year anniversary of their surgery. We didn't quite make the exact anniversary (kept rescheduling because one or the other was sick), but we were close. Here are a few of my favorite pictures of that day...

We also got a few sweet pics of Sierra...

And, because it's Bodie, we also got our fair share of pics of Bodie sobbing hysterically while Liam, sweet and happy, looked on in utter confusion. Welcome to our world, Liam.


Thursday, May 19, 2011


I had an incredible opportunity this past Tuesday - thanks to the unbelievable generosity of some of Dusk's relatives, I was able to steal away to spend an afternoon and night with some of the most lovely women. One of the things we did during our time spent together (which was a complete surprise to all of us - all we were told was when we were being picked up - nothing else!) was a Jesus Culture concert at the Nokia Theatre downtown. (If you're not familiar with Jesus Culture (I wasn't, before Tuesday night), they describe themselves as follows: "Jesus Culture exists to ignite revival in the nations of the earth. Our heart is to compel the Body of Christ to radically abandon itself to a lifestyle of worship, motivated by a passion to see God receive the glory that is due His name.") The concert was amazing and completely revitalizing. It was an awesome evening.

While the band had most of the people in attendance standing and dancing along, I stayed seated, since I really shouldn't be on my broken foot for that long (yes, still, that stinking broken foot in the way). So, I just sat there and let this amazing praise music just wash over me and seep into my body. Into my very, very, oh so tired body. And I realized, as I sat there, my eyes welling up with tears, that I.AM.EXHAUSTED. Mentally, physically, emotionally and spiritually EXHAUSTED.

I think all mothers of young children can relate, but truly, the exhaustion when you have a medically fragile child is at an entirely different level. Lately, I have really been beating myself up for not being the "perfect" mom. When it was just Sierra, I felt like Supermom, like I had everything together and was so organized and on top of things. And then Bodie came along. And our whole world shifted - and it hasn't quite shifted back yet. And I feel like it should have. I felt like I was making excuses for my inadequacies, by blaming it on Bodie's medical condition. I mean, he's doing great now. Other than meds 3 times a day and cardiology appointments every 2 months, he's just like any other kid. So why can't I get my life together? Why can't I be like any other mom? Well, because I'm not like any other mom. And our family isn't like any other family. In addition to the normal hustle and bustle of young kids, our family has been dealing with some pretty heavy duty life and death stuff this last year, and I don't think you can overestimate how that impacts you...

I hadn't really thought about it until Tuesday night (because Lord knows, when do I have time to just sit and think, right?) But the past 15 months, well, heck, the last 20 months if we go all the way back to the prenatal diagnosis, have been tough. We powered on through it, doing what we had to do go get through it, but now we're sitting more or less on the other side, far enough away from it (and hopefully far enough away from our next bout with this) to start to reflect upon it. And it's freaking scary.

I just had all these thoughts running through my mind as I was sitting there. I thought of the times we almost lost Bodie, as I sat next to him and cried as the doctors hurried in and out with worry in their eyes. I thought of the sweet 8 year boy who was Bodie's roommate - the vivacious little boy who went into cardiac arrest outside of Chuck E. Cheese and had lost enough oxygen to his brain that he was essentially a vegetable. We never saw that vivacious boy, only his moaning body, and the haunted eyes of his parents. I thought of the little 4 year-old boy who coded and passed away in the room next to us after Bodie's Glenn surgery, how minutes before it happened, he was joking around with the nurses, wearing his cute Buzz Lightyear shirt. I can still hear his mother sobbing. I thought of my dear friend Nicole, who wrote last week of the rain, and how it reminded her of the night they lost Travis, how she watched the rain come down the windows, as they performed CPR for 2 hours and she prayed that God would not take her son. And I thought of my sweet Bodie. I thought of the fact that I will very likely outlive my son. I thought about the big question mark over his head. I let my mind go to a place I rarely let it go.

You see, Bodie is doing well. Not just well, but fantastic, now. But with a cardiac child, you can never truly rest. They are never "fixed" - every "fix" brings new concerns, new worries. The reality is that some of these kids are simply "living on borrowed time." The problem is that you don't know whether your child is one of those kids or not. But you can't live life thinking about that. You have to enjoy life and to really let yourself think of how dangerous your child's heart condition is would absolutely cripple you. So, you push it down. You trust in God to protect your child, you focus on enjoying every moment you have with your child, heck, with all of your children. And you just keep living.

But it takes a great deal of strength and energy to push away these thoughts, even if you are a person of great faith. I have a lot of faith in God and I KNOW (I don't just think, I know) that He is watching out for my son. When the time comes for Him to take my son home, I know any separation will only be temporary, because He promises us an eternity with Him if we'll only believe in Him. But I am only human. And the human side of me is absolutely paralyzed with the fear that I could lose my son at any moment. So, I have to daily wake up and make the decision to turn my fear over to the Lord. But if I only mostly turn it over, there's still a part of me that is focusing on it, and stressing about it. And that constant exercise of pushing those feelings down but not yet completely turning them over to God means that there is a constant current of stress running through our household. It means I am edgy. It means that I schedule out every minute of my day so that I don't let myself go there and think these thoughts. It also means I don't have "me" time. And it means I.AM.EXHAUSTED. It's mentally exhausting to essentially live in a state of denial, if that makes sense - it's not natural.

Oh man, I am rambling. I think what I'm trying to say is that Tuesday night was really important for me. The opportunity to sit down and just BE, something that I, as a mother of young kids, never let myself do, was very eye opening. I realized that I need to cut myself some slack for not being a perfect mom, for not having the perfectly clean house, for not exercising like I need to be, for just not being the together and with-it mom I was before Bodie came along. I've seen things no mother should ever imagine, let alone see and I need to remember that when I'm comparing myself to the supermoms out there (by the way, thank you to my awesome sister-in-law Missy for helping me come to this realization!). I am still the woman I was before, but a different version. I am bruised. I am battered. I am tired. And I need to give all of it over to God so that my body and mind can finally rest. Not just 99.99% of it. But all of it. And I think that is the start of healing. Of being the best mom I can be for these 2 sweet munchkins.

So, the next time you happen to run into a mom of a medically fragile child, or a child dealing with some not-so-ordinary issues, say an extra prayer for her, give her an extra hug, offer to watch her kids for a bit so she can get away for some "me" time to refill her reserves...because you never know what's going on inside her tired mind. :-)


Monday, May 16, 2011

Bodie vs. The Altitude: Round 1.

Well, we did it! We tried Bodie out at elevation this last weekend and he did ok!!! The short story is that he tolerated it ok, his sats dropped, but he otherwise seemed fine. The not-so-short story is that we realized on the way up that he was already heading into a pulmonary hypertension episode (that was even before we had any elevation change), he didn't sleep well (ok, that's an understatement - he was pretty much moaning and tossing/turning all night long), the next morning, he had a runny nose (caught daddy's cold) and spent the entire weekend grabbing his gums and screaming in pain (yup, more teeth - the good news is that once these last 2 are in, we are done other than the last 2 sets of molars, which shouldn't be for a while...we hope).

His sats did drop (to the high 60's and low 70's from his usual low 80's), but honestly, his sats can drop that low from a pulmonary hypertension episode alone - or from an episode triggered by a cold or teething...so, it's hard for us to know whether he was truly responding to the altitude or the cold...or the pulmonary hypertension attack...or the teething. But in any case, other than the night of restless sleep (probably due to a sore throat from the cold, we're guessing - either that, or the fact that mommy forgot the sheets for the pack 'n' play so the poor kid was sleeping on a rubber mattress basically - oops), he was acting fine. I would never have known we were at a higher elevation than home, let alone 5,000ft! He was his usual crazy adventurous self - climbing on everything, crawling and cruising like a madman. His color was great and he was happy, well, except when he wasn't grabbing his gums in pain. So, our big takeaway from all of this is that if, even with a PH episode, and teething, and a cold, he tolerated altitude ok, he's probably ok for us to try a bigger trip. So (drumroll please), his cardiologist has given us the go-ahead to try for a Tahoe trip this summer!!! (yes, of course, subject to the fine print that always comes with planning anything with this kid - things could change at any moment, but based on what we know at this exact moment in time, it looks like we can plan our trip!)

We ended up spending one night in Idyllwild and then headed down to Palm Springs for the rest of the weekend. We took a short detour through the living desert, a little zoo in the desert that Sierra always loves. It was a great weekend, as you can see:

The cabin we stayed in had a little playground onsite and the kids loved it. I couldn't believe they didn't advertise it on their website - it was the biggest selling point for the kids!
The cabins right next to us had a beautiful coy pond and a path down to the creek. Sierra had so much fun feeding the coy! Can you believe how many fish there are (and how fat they are? Clearly my kids aren't the only ones into feeding them!)

Dusk went in the creek with the kids. Sierra loved it. Wish I had a pic of Bodie smiling with his feet in as well...but sadly, every pic we have of Bodie in the water is of him crying. He was NOT a fan.
The Desert of the Zoo has a really cool petting zoo. Sierra always loves it. Bodie had a lot of fun this year. He was really into petting the animals. But they weren't quite so into him. One of the little goats got tired of his not-so-gentle petting and got up and walked away. Bodie's response? To look up at me, stick out his lower lip and start crying. It was so stinking cute.
Both of the kids were pretty enthralled with the leopards. Absolutely beautiful.
The kids were totally into the rocks at my parents' place, just digging through them and holding them up proudly. Amazing what excites kids.
And lastly, we discovered that there is a mini-golf course in my parents' division (their place in Palm Springs is on a golf course). The kids had a lot of fun, mostly watching daddy hit balls and me try - and lose them. As many of you know, Bodie will not be permitted to play hard contact sports (like football and rugby) and may have other limitations as well - all dependent on him. So, we've decided he can either be a world championship bowler...or a golfer. I'm gonna go with golfing being cooler (sorry to any competitive bowlers who read the blog). So, he got to try his hand at the golf club. We got some really cute shots...

Who knew...even the little guys get pissed off playing golf?
It's all about lining the shot up perfectly...
All in all, it was another fun weekend, colds and teething aside. It also held a lot of emotions for me. On Saturday night, we took a little ride in the golf cart after dark. As Sierra was snuggled between Dusk and I and Bodie was comfortably settled against me in the Ergo, I couldn't help but remember the last time we took an after-dinner ride in the golf cart. It was 4th of July weekend last year and Bodie was in the cticu, recovering from his pre-Glenn cath. He had been in the hospital almost 5 months straight at that point and it was the one and only weekend we left town. I was so nervous to do so, but he had an amazing nurse who watched him all weekend. I remember just hoping and praying that one day Bodie would get to make it out to Palm Springs with us. Boy did God answer that prayer!

Then, Sunday was Dusk's birthday and as I was watching Bodie in awe (and exhaustion) at lunch (the stinking kid has figured out how to wriggle out of restaurant style high chairs and he just immediately stands up in the high chair the first chance he gets), I was reminded that last year, he was readmitted to the hospital on Dusk's birthday. I remember it was a Saturday and I was hurriedly frosting Dusk's cake, knowing Bodie and I were headed to the ER in a few hours (he had blood in his stool, so we knew we had to take him in, but it wasn't urgent, so I was getting stuff done before we left) and knowing there was a chance we wouldn't be home that evening. Little did I know that day would be the start of a hospital stay that would last over 2 months and include 2 stays in the icu, 2 separate intubations, 3 nasty infections, a full immunology workup and a cardiac catheterization. I am so glad I had no idea that was coming while I was sitting there innocently frosting Dusk's birthday cake. ;-) So this year, when we celebrated Dusk's birthday, we celebrated the end of a year that started out way too rough and hopefully the start of a much calmer year. :-)

Thanks as always for your prayers and support!

Sunday, May 8, 2011

Happy Mother's Day!

Happy Mother's Day!

What a joy to have both of my children at home with me this year for Mother's Day (Mother's Day was one of 7 holidays that Bodie spent in the hospital last year). And to add to the joy of the celebration, I got to have my amazing mother in town for Mother's Day as well! I love you mom!

I received 2 very special Mother's Day treats on Saturday night, although neither was actually intended to be a Mother's Day gift. First, I had the privilege of tagging along with my dear heart mom friend Dana to the CHLA Gala to celebrate the opening of the new hospital building. Wow, what a night! In addition to celebrating CHLA and some incredible fundraising done (over $1B raised!), I had an opportunity to reconnect with some of the surgeons, critical care doctors and nurses who had taken such unbelievable care of Bodie. It really was incredible to get to see them completely out of the hospital setting. And it was quite amazing to hear how many of them had seen our Sisters by Heart video and were so touched by it and interested in what we are doing. Dana I just kept remarking on how far we had come since last year, as both of our very special heart babies were lying in the cticu so very, very sick. Now, they are both doing incredibly well. What an amazing blessing! It was such a wonderful night - thank you Dana for thinking to invite me - and thank you Mark for letting me steal your amazing wife - and your seat! :-)

When I got home from the event, I checked the California Secretary of State website. We filed our Articles of Incorporation for Sisters by Heart on February 14, but the great state of California has a 2 month + backlog right now, so we have been waiting...and waiting...and waiting to hear that our articles had been accepted. Well, lo and behold, on Saturday night, the site listed Sisters by Heart as a California nonprofit corporation! Our next step is to obtain our 501(c)(3) status so that all of your much-appreciated contributions will be tax deductible! It was such a wonderful step for us!

Today, we celebrated Mother's Day by going to church in the morning, then out to lunch with my parents and my brother Matt, his wife Val and their angel of a child, 10 month old Michael (seriously, he is such an angel - he slept peacefully all during lunch and then woke up all happy and smiling and was just as content as could be to sit on Val's lap, cooing at everyone and happily playing. Meanwhile, Bodie was alternating between laughing and breaking down into crocodile tears at the word "no," hurling silverware onto the floor, stealing food off my plate, demanding to get out of the highchair and cruise around, and crawling under the table to try to pick food up off the floor to shove in his mouth. Seriously. You see why I call Michael the angel child? LOL). But it was a wonderful lunch. And in addition to a sweet handmade card that Dusk helped Sierra and Bodie make for me for Mother's Day, Sierra made me a sweet, sweet "portrait" of me for Mother's Day, along with a quote her teacher had taped to it that read "I love my mom because she plays games with me. She plays Babies and dress up. She takes me to the store and she hugs me. She kisses me on my cheeks. She likes salad and she likes dogs. She does't have any dresses she likes pants." Seriously, is that the sweetest gift ever? One I will cherish forever. (Oh, and a special thank-you to her teacher for probably editing out the not so flattering stuff Sierra told her about me!)

All in all, it was a wonderful Mother's day and such a reminder to me of how much I have to be grateful for. A big part of my heart was heavy today, thinking of my sweet fellow heart moms who don't have chubby cheeks to kiss and hands to hold today, who had to say goodbye to their angels far too soon. My mind never wandered far from Nicole (missing Travis), Laura (missing Gwen), Jen (missing Mia), Jillian (missing Wyatt), Jill (missing Joshua), Miranda (missing Wyatt), Lauren (missing Caleb), Heather (missing Parker), Katie (missing Olivia), Courteney (missing EJ) and Cindy (missing Isaac) and far too many others. And fellow mom Sharon, always Sharon (missing sweet Ali). I know for these moms, Mother's Day will never be the same. Sending you all love and hugs today. xoxo

I wanted to close with a really special poem that I came across. It was written by Stephanie Husted, a mother to a son with HLHS. Stephanie has such an amazing gift and her words touch my heart so deeply. Thank you Stephanie for sharing your poems with all of us.

A Mother's Day Poem
This is for the Mothers...
(Each mother that I've known)
Whose greatest hope was someday,
To have children of her own.

For the ones who proudly rocked their dolls,
And kissed them each goodnight,
This is for the Mothers...
Who were told..."Something's not right".

This is for the mother...
Who when faced with such a trial,
Sits beside her child's bed,
Just praying all the while,

For moms who learned of patience,
In a way that no one should,
For the mothers who know sometimes,
Life is anything but good.

When dreams of all the "oohs" and "ahhs",
As doting friends arrive,
Become instead...a battle,
To help their child thrive.

This is for the mothers...
Who refuse to face defeat,
Who become their child's advocate,
Who teach their child to eat.

Appointments fill their busy lives,
It's time to go again,
With feeding pumps, and specialists,
A tank of oxygen.

As people stop...to take a look,
Just wondering...what's wrong?
I've seen that look, a hundred times,
"You must be very strong".

The oohs and ahhs...don't matter,
Now life seems much more clear,
I'm lucky I'm his mother,
I'm blessed that he's still here.

This is for the mother....
Whose shaking hands release,
The child that she loves so much,
(And then she prays for peace)

"We will take good care of him"
The nurse says carefully,
This mother's thoughts are simple,
"Lord bring him back to me.

His life no longer in her hands,
She wonders what's in store,
This is for the mother....
Who has walked this road before.

This is for the mother....
Whose worst fear comes to light,
"Were still not certain what went wrong...."
"We'll watch her through the night."

For mothers who sit powerless,
Praying...please let her survive,
For mothers who must go on somehow,
When their miracle doesn't arrive.

As some wake up on Mothers day...
To kisses, cards and laughs,
Others have just memories,
and well worn photographs.

This is for the Mothers....
Who knows that it's a treasure,
To have a child...love a child,
There is no greater pleasure.

For runny eggs and blackened toast,
Arranged upon a tray,
With a bunch of wilted dandelions,
"Mom does it taste okay"?

For every busy restauraunt,
And every crowded mall,
The words...."I love you mama" are...
The greatest gift of all.

~Stephanie Husted
Heart Mom to Braeden


Thursday, May 5, 2011

Stand by Your Man

Big Bodie news! In the past week, he started standing all by himself! He is SO proud of himself. It's really cute! Before this week, the only way we could get him to stand would be to trick him into it (providing him really minimal support and letting go when he wasn't paying attention) and he would only hold it for a couple of seconds before falling over. OR, he would wet noodle the second we even tried. But last weekend, we were up at my parents and he was cruising around a chest. I asked him if he wanted to let go and he looked at me and totally let go! He's been doing it more and more ever since and did it for 20 seconds today! And he just grins from ear to ear and squeals while doing it. It is so cute. :-)

And, in other big Bodie news, he's adding teeth. In true Bodie fashion, he's going bigtime and cutting a lot at once. Last week, he cut tooth #11 and 12 and this week, he's cutting #13 and #14 right now. AND, he's been grabbing the other side of his mouth and crying all day, so I'm guessing #15 and #16 are right around the corner as well. Hmmm...last time it was 6 teeth in 6 weeks. Wonder if this time around it will be 6 teeth in 3 weeks? Crazy stuff. Please pray he cuts these teeth quickly!

And in mommy news, I finally lost this hideous boot this week! (ain't it a beaut?)

YAY!!! Now, I'm in a post-op shoe for hopefully just a couple more weeks. (Today, at Target, I ran into a woman wearing a boot similar to what I had been in - she had fallen trying to get into a cab. You should have seen her face when I mentioned I had been in a similar boot, she asked how long and I said "3 months." I thought she was going to start crying (she's only been in the boot 2 weeks). Oops.)

I have been TERRIBLE about taking pics of the kids lately - just a lot going on. But here is one I snapped with my cell this morning at Target.

I thought it was cute because you can see how much Bodie has grown just in the past 3 months, when this pic was taken (also at Target, of course - the surburban mom's crack). He's looking so much more like a little boy and less like a baby these days!