Saturday, January 29, 2011

A Stand-Up Man

So I know my last few posts have been really heavy, so I was planning on doing a post tonight called "Levity" with funny stories about what the kids have been up to lately. One of the funny things that's been going on is Bodie's ridiculous desire to try to pull into a stand. on. everything. But he can't quite do it yet (still needs just a little push up from mama) and it's really funny because he tries so hard. Guess the joke's on me, because this is what he did tonight:

SO proud of himself. I thought it might be a fluke (and I could hold off dropping the crib mattress until tomorrow)...until he did it again 2 minutes later. So, instead of getting the kids to bed early tonight and relaxing, I got to tear the crib apart and drop the crib mattress. Of course, Dusk was working late (would I expect any less of Bodie, but to pull to a stand in his crib on a night Dusk is working late?), and any parent whose ever had to drop a crib mattress before will tell you that it is NOT a one-man job (especially with a crying infant crawling on top of you), so I called in reinforcements in the form of the amazing Lucy Rodgers to help me out. Thank you Lucy!!! We got the job done and Bodie was sleeping soundly in his newly lowered crib shortly thereafter. Exciting times, I tell you!

In all seriousness, I was really surprised and excited to see how fast Bodie figured out how to pull up on stuff. He just started trying last Sunday, so in less than a week, he completely figured it out and can now do it all on his own! He also started cruising this week! His therapists keep commenting on how smart he is and how quickly he catches on to things (their games, different positions, etc.) and we're definitely seeing that. One of the concerns that always sits at the back of my mind is whether Bodie will suffer developmentally from everything that has happened (cognitive issues are not uncommon with heart kids, due to the reduced oxygenation and time spent on bypass), so it was hugely comforting to hear them say things like that! Couldn't possibly be prouder of our little guy.

Now, for the levity part...

We've been laughing around here a lot lately, partly because of Bodie's silly antics, but also from Sierra. She is such a character, full of energy and love. Today, she came down the hall dressed in this, saying "bye mama. Bye Bodie. We're going to the park"

(By "we," I assume she meant her and dolly. Not sure if you can clearly see her get-up here, but included zebra pants, high heeled princess dress up shoes and her backpack - so funny)

Shortly thereafter, I told her to go to her room and get dressed. I went back to find her in her room, in her bathing suit, princess tiara and princess dress up shoes, posing in front of the mirror and saying "Hello there Miss Fabulous" What the what? I seriously could not stop laughing. As an aside, she probably doesn't have a half bad idea of how to start the day. Maybe my days would go a bit better if I started them with such self-affirmation. :-)

As for Bodie, this kid is crazy. He does everything to the max - laughing, crying, eating (or not eating, depending on the day), pulling things, throwing things, you name it. He's started self-feeding and is having SO MUCH fun. Turns out, he loves avocado (I'm pretty sure he thinks guac is a food group!)...

He has discovered my tupperware drawers, and loves to sit there and just pull everything out and hurl it across the kitchen. Case in point, tonight, he got into the cabinet with Sierra's plates and threw them everywhere. He was so proud of himself:

And, of course, he just had to pull up on the (completely unstable) shelf in the cabinet

So, we're laughing a lot around here these days and trying like mad to keep up with 2 crazy kids. :-)

Friday, January 28, 2011

Hope comes in all sizes

The night Wyatt died, Dusk and I prayed, like so many nights before, for Jillian and Lucas. But our prayer was for peace, and for comfort. After prayer time, Sierra asked "daddy, where is Wyatt? Did he go to jail?" (we had been discussing jail earlier in the evening, so I'm guessing that's why it was on her mind.) Dusk replied "no sweetie, he went to be with Jesus in Heaven." There was the briefest of pauses while Sierra processed it and then said, so full of innocent sweetness and concern "but then his mama can't see him anymore."

Oh my heart has been heavy this week and that statement just encapsulates it. My heart is beyond heavy for Jillian and Lucas. My heart is heavy for the 6 other parents who lost babies to HLHS this past week (yes, you read that right, 6 - and those are just the ones I know about on Facebook - it has been a rough week indeed for the HLHS community). My heart is heavy for sweet 3 year old siblings (of whom I know 5 personally), who have had to grow up too soon and ask questions about why babies go to Heaven. Yes, my heart has been heavy.

But, like every other dark time in my life, God has nudged me and reminded me that HE alone can give me HOPE. Ah, blessed hope. Nothing more beautiful and powerful than HOPE.

God gives us HOPE of a life beyond this one far sweeter than we can possibly fathom. He sent His son to die for us, and if we will only believe in Jesus, we will be saved, and are promised an eternity. What sweet HOPE that is - no matter how hard things get on this earth, it is only temporary. No matter how excrutiating it is to lose loved ones on this earth, thankfully we have the promise that our separation is only temporary and a fraction of the time we will spend together in Heaven. How do I get through weeks like this week? By remembering that. By knowing that, even though Bodie is fragile, and his time with us may very well be limited like the 7 sweet babies who passed this week, we will spend forever with him in God's kingdom.

I am only human, and my heart breaks here on earth, for the babies lost, for their parents with empty arms, for my sweet boy and what each loss means for his future, for his sister, who has to ask questions no 3 year old should even have to think about. But I know in my heart and in my mind that God's promises are greater than all this. And so I carry on, buoyed by that promise and our great HOPE for the life after this one.

As for the here and now, God also brought me hope in a very tangible way this week. He brought Kenny Castano into our lives. I had met Kenny through Facebook (the Facebook CHD community is very tight), but actually had the opportunity to meet him in person. Kenny is a 22 year old HLHS survivor (yes, you read that right - he is one of the oldest living HLHS survivors!) who is doing incredible. He has undergone the 3-stage palliative surgeries and a pacemaker (5 years ago), and is doing great. He's on minimal meds, has not needed a transplant and is just, well, normal. Blessed normal. (Unless you're a heart parent, you don't understand how beautiful that word is.) He is going to be working as a CNA shortly and is active, energetic and loving life. He happened to be in Southern California and stopped by for a visit with his incredibly nice dad and his brother. Thank you so much Kenny!!! We had the opportunity to have Townes (Bodie's HLHS buddy) and his family over at the same time and snapped some great pictures. Here are some pics of our HOPE for today and tomorrow:

Absolute miracles: Townes (2), Kenny (22), Bodie (11 months) - 3 ventricles among them! :-)

From one miracle to another...
Our little half-hearted wonder boys:
Sara and I with our broken-hearted miracles:

I needed HOPE this week and God brought it to me in spades. He quietly reminded me of the HOPE He alone can provide, for an incredible life after this one. He brought Kenny to us, to give me HOPE for 20 years down the road, the thought that kids with this diagnosis DO succeed and live happy, healthy lives. And He reminded me that he brought Townes into our lives, to give us HOPE for 2 weeks, 2 months, 2 years down the road, hope for our immediate future with Bodie. We're so grateful for this HOPE and for all of the blessings He has put in our lives. :-)

Monday, January 24, 2011

Fly High Sweet Wyatt

Wyatt Greeno
July 13, 2010 - January 24, 2011
Hypoplastic Left Heart Syndrome

You fought so hard sweet boy; rest in peace tonight and dance among the angels tomorrow. We will all miss you so much.

Please pray for his parents Jillian and Lucas as they process this tremendous loss. Thank you so much for your continued prayers for the Greeno family.

A miracle for Wyatt

Please, please continue to pray for Wyatt. He was placed on ECMO last night, which is essentially a heart/lung bypass machine that takes blood out of the body, oxygenates it and then puts it back in. It gives the body a HUGE break, which is really helpful when someone has been through a lot like Wyatt has - but it is not without some pretty serious risks, including brain bleeds. This morning, Wyatt's parents were given an extremely grim prognosis and thought that Wyatt wouldn't make it. It appears there is now a glimmer of hope. Please pray that Jillian and Lucas can hold on to that glimmer of hope and that God would pull sweet Wyatt through this scary time of life.


Sunday, January 23, 2011

Update on Wyatt

Please continue to be deep in prayer for Wyatt. Sweet little man has had a rough couple of days including several trips to the cath lab and finally having his chest reopened. They put a stent in, which re-established blood flow to his left lung and looked like it was helping, but his sats and pressures are still dropping. He's now on Nitric Oxide to help his lungs. I know firsthand how scary it is to watch your child continue to decompensate and to wonder if they will get it fixed in time. Please keep those prayers coming!!! If you would like to offer support to Wyatt and his family, his caring bridge site is

Thank you everyone!

Friday, January 21, 2011

Prayers for Wyatt

I am writing tonight with an urgent prayer request for this little guy: one of Bodie's heart buddies, Wyatt. Wyatt is an adorable 6 month old little guy with HLHS. He had his comprehensive Glenn Wednesday (essentially his Norwood and Glenn in one surgery). Initially, his recovery was astounding - surpassing all expectations. But he started having breathing problems yesterday and it has escalated to full scale complications in the form of a serious blood clot. He has been to the cath lab twice today and they're trying to figure out how to get rid of this stinking clot. They have a lot of factors to weigh, mostly the need for him to clot well at 2 days post-op open heart surgery (cannot risk him bleeding out) against the need to avoid him clotting when he already has a clotting disorder. It's very treacherous ground they're walking right now and the doctors need all the wisdom they can get in how to properly treat sweet Wyatt. Please, please, stop and pray for sweet Wyatt, his doctors and his mom and dad tonight. We know firsthand how scary this stuff is. And blood clots are very scary stuff (can absolutely be fatal), so we really need the docs to figure this out quickly.
Thanks so much.

Thursday, January 20, 2011

For the love of a mother...

(old pic of my mom with the kiddos - need to get a new one soon!)

I just wanted to send a huge shout out to my mom for coming down to help us out the last few days!

Sadly, she had to head back home today, but not before basically being our indentured servant for the last few days. In her usual fashion, she drove down here, popped in and started helping immediately. She is amazing. She sees a need and fills it without even asking. In just the past 4 days, she has washed and folded laundry, unloaded and reloaded the dishwasher, taken the kids to the park, driven all over LA (believe me, that's no big feat - LA traffic bites, to put it mildly) - you name it, she's done it. And all with a smile on her face!

Most of all, she's tried to help out with Bodie and always taken him without question. Here's why that's a big deal. Bodie is a PAIN right now. Because he's teething he literally won't go to ANYONE but me (or occasionally, if he's feeling charitable, Dusk). He will smile and coo and laugh at others, but the second I go to hand him over, the waterworks start. He screams. He gasps. He cries. He struggles. Big, huge, alligator tears streak down his face. Honestly, it is so ridiculous. You would think my mom is pinching him as hard as she possibly can from the way he screams when she holds her. Then, you hand him back to me and he looks at her, looks away and then starts laughing, grinning and coo'ing again. If it didn't make it impossible for me to get anything done, it would be really funny. So, the fact that she kept willingly subjecting herself to his abuse just speaks volumes to how wonderful my mom is.

So THANK YOU mom!!! There are not enough words to express our gratitude for all of the help you have given us this past year. We love you so much and can't wait to see you again! Drive safe!

(Oh, and in related news, we finally got into the orthopedist today and he confirmed I fractured my fifth metatarsal (the long bone that runs along the outside of my foot). I was very lucky that it broke where it did - had it broken a fraction of an inch higher, they'd have casted it and put me on crutches. Are you kidding me? HOW would I have done crutches with 2 little ones? Craziness, I tell you. As it is, I have to ice it daily, limit activity and wear my lovely post-op shoe for approx 8-10 weeks. So much for finally getting back to the gym! At the rate I'm going, this baby weight won't come off until Bodie's about 10 years old! I technically am not supposed to drive, but he kind of left it up to me as to what I can do without too much pain. Luckily, most anywhere I need to go these days is pretty close! Please pray for quick healing and for the pain to go away!)

The Happiest Place on Earth

I have been meaning to post this entry for days, but between hobbling around on a broken foot, playing multiple games of Candyland with Sierra and trying to soothe "Mr. Velcro" who cannot stand to be more than arm's distance away anywhere outside of my arms while trying to cut tooth #9, 10 and 11 all at once (I am convinced he's trying to complete his entire set of teeth in time for his 1st birthday), I haven't found the time. So, I'm afraid this is an overdue post. But better late than never, right? :-)

Dusk's family came to town a few weeks ago - his dad Alan and wife Jan (or, as they're known in these parts, "Popo Alan and Grandma Jan"), and his brother Paul and wife Missy and their 2 sweet girls, Hannah (almost 8) and Amelia (3 weeks younger than Sierra). We had SO MUCH fun!!! Everyone came out to Palm Springs (my parents have a beautiful place in Palm Springs that we love to just go and veg out at) and then we went to Disneyland!!! It was a really wonderful time. Although Jan and Alan had met Bodie twice before, once was when he was still a newborn in the hospital and the 2nd time was the day he came home from the hospital after his Glenn surgery. Neither were exactly opportunities to see Bodie relaxed and happy. So that was really fun. And Paul, Missy and the girls had never met Bodie (and hadn't seen Sierra in 2 years), so it was really wonderful to watch all of them connect! Here are some pics from the fun...

Mr. Chubbers, ready for a swim with cousin Hannah and Popo Alan
Laughing at Popo Alan and Grandma Jan
Popo Alan and Grandma Jan with the grandkids
How cute are these girls???

All of us in our aprons handmade by Grandma Jan - isn't she talented???

The obligatory Grandparents / crying grandkids pic
Sweet cousins...
Mommy snuggling with sweet Bodie...
Seriously. Up. to. no. good.
SO excited for Disneyland!!! (um...didn't realize the strap on her dress broke until we were already there. I suppose a good mom would have hunted down a safety pin to fix it. Me? Well, if it didn't bother her, why should I let it bother me?)
2 little princesses, Sierra and ready for Disneyland!
Outside the castle...
Just like last time, Sierra LOVED the carousel
Bodie was also a BIG fan of the carousel - especially from the comfort of the Ergo!

From the second we walked in, all Sierra could talk about was "where are the princesses? want to see the princesses!!!" Of course, one we got to where the princesses were, she was wouldn't get near them. Cinderella was kind enough to really try to get Sierra to warm up. It was really sweet.

Although she was too scared to talk to the princesses, she was OBSESSED with these Native American statue things. Climbed and hugged on every one she saw. Whatever works, I suppose.
Family pic at the end of the night - everyone was a bit tired from all of the excitement...
About 2 minutes after taking our family picture...this is what I looked down to see. Just doesn't get any sweeter than this...

All in all, it was a wonderful trip. We were so blessed to have our extended family out here and to be able to enjoy the health of of both of our kiddos and their sweet cousins at the Happiest place on earth. :-)

Monday, January 17, 2011

What a day

Yesterday was Bodie's 11 month birthday. Sadly, he (and I) didn't think it would be memorable enough as it was, so we decided to throw in a trip to Urgent Care. :-(

Yesterday morning, Dusk, Sierra, Bodie and I were crossing the street to head into church. Dusk had just gotten Sierra out of the car and I was carrying Bodie, my coffee, the diaper bag and a Christmas present for friends at church (I know, you can see where this is going, right? I must confess that I'm a chronic multi-tasker. But I was very well balanced, I promise!) Well, I tripped over a crack in the asphalt and fell down HARD. Bodie flew out of my arms and smacked his head on the concrete. Landed about a foot or so away from me. Unbelievably scary. We've been through A LOT with this kid, as you know, and this was by far one of the scariest moments. He started crying immediately, which, as far as head injuries go, is actually a really good sign. To be honest, we've gone over the incident a million times in our heads and we still can't quite figure out exactly how it happened. As best as we can tell, I fell to my right (I hold Bodie on my left hip) and he stayed in my arms until I hit the ground and then bounced out.

We went into church, debating about whether to take him into Children's or not. He didn't seem dazed, but was definitely agitated (I think I would be too if I had just gone from the safety of my mom's arms to my head smacking into the pavement.). We decided to watch him for just a bit before taking him in. (For those of you without kids, particularly cardiac kids, the decision to take them to the ER is never a light one - you always balance the absolute need to go with the possibility that they will catch something highly disgusting and contagious while there.) In any case, within about 20 minutes he had more or less calmed down and was smiling and interactive. Definitely his normal self. I, on the other hand, had a goosegg on the side of my right foot and really didn't have much mobility in it. I actually wish I had taken a picture because it was pretty creepy looking. I looked down at my foot, which looked like someone had literally stuck a gumball under the skin (it was unbelievably swollen in one very specific spot), and thought to myself "ok, I know this is all about Bodie right now, but I'm pretty sure my foot isn't supposed to look like that." So, off to urgent care we went.

Had Bodie checked out, because it's much better to be safe than sorry. He charmed the pants off of everyone there (always a GREAT opportunity to educate about CHD's - the attending doc actually said "wow, hypoplastic left? you really don't see too many of those" and he kept commenting on how great Bodie looked). PRAISE GOD Bodie was ok.

Me? Broken foot. Ugh. Such a clutz. Ah well. Came home with a lovely post-op shoe and instructions to see an orthopedist as soon as possible. Want to guess how much luck I had with that today, on MLK Day? Thank goodness my mom was planning on coming to town anyway - she's already been SUCH a huge help to me, since I'm supposed to be off my feet if possible (yeah, right, with 2 young kids - but I should get brownie points for sort of trying, right?).

So yes, all's well that end's well. If one of us had to end yesterday requiring medical follow-up, I'm sure glad it was me and not Bodie. Pretty sure we had some divine intervention yesterday. Nothing new for this little guy. :-) Sadly, someday when someone jokingly asks Bodie "what is wrong with you? were you dropped on your head as a kid or something" he will be able to respond "well, actually...yes." Sorry kiddo.

Oh, and just in case you don't believe me about how well he's doing, these pics were taken yesterday afternoon (yes, the middle of January - gotta love Southern California!):

(I'm pretty sure this was Bodie's assessment of the whole incident.)

A Picture Perfect Cardiology Appointment

Bodie had his monthly cardiology appointment today and it couldn't have gone better! He's still steadily gaining - he weighed in at 19lb5oz (a little over 10%) and measured 29.5in (over 50%)! Would have liked him to have gained a bit more, but honestly since he's been teething and basically refusing the bottle since Thanksgiving, I'm thrilled he's even still on his growth curve!

His echo looked fantastic as well - praise God! And (drumroll, please), for the first time ever, he had a completely normal EKG! (He wasn't using his pacer AT ALL (likely because we stopped his Propanalol which had reduced his underlying heart rate) - we were thrilled about this, because the less he uses it, the longer his battery will last, which means hopefully it will last until his Fontan and they can just replace the battery when they're in there anyway.) Overall, it was a great appointment! And, since my mom was in town, I took the opportunity to get some pictures of Bodie at his appointment (usually I'm too busy holding him to take pics):

On the table waiting for his echo...
Mommy, are we REALLY doing this again?
Oh, are we done yet (as the tech goes to put Elmo into the DVD player to distract Bodie)? This is how most diaper changes go,too - Bodie flipping over onto his belly mid-"procedure."
EKG time! (you can tell how excited he is, right?)
Bodie checking out Dr. Kim listening to his sweet imperfect little heart.
"Here, let me show you how to do it"
We love Dr. Kim!!!
Bodie doing, well, what Bodie does. Crying. Yup, can you tell someone is ready for the appointment to be over? :-) By the way, not sure if you can see Dr. Kim's hand in this last pic, but she's sporting some new bling! Just got engaged! Congrats Dr. Kim (although Bodie is sad, since he thought you were saving yourself for him - in fact, I like to think that's what prompted his meltdown! ;-))!