Wednesday, June 29, 2011

Getting our groove back

Today has been a GREAT day. No wait, make that FANTASTIC. My birthday last year was a rough day. Actually, it was just one of many dark days last spring and early summer. Bodie had been in the hospital for almost 4 months straight at that point in time, was still dependent on Milrinone, had a remaining hospital stay of at least another 3 weeks ahead of him, had his next open-heart surgery just around the corner (but no one knew how far around the corner or even which corner we were talking about for that matter) and was just really fragile. Sierra had just been suspended from her preschool under threat of explusion for biting her best friend multiple times. I had just been let go from my job because I had exhausted my maternity leave and simply could not return with Bodie still in the hospital. I was taking Sierra with me to the hospital every day, trying to juggle taking care of a fragile newborn and a confused toddler who really just needed to be near mommy. On top of all of that, I was pumping all the time. Yep, it sucked. I don't remember much from my birthday, but I do remember a few key points - (1) crying as soon as I got to the hospital because the gravity of how sucky my situation was really set in. Bodie's amazing nutritionist, Emily (oh my, how we LOVE Emily!) walked in right at that moment. She just gave me a big hug. It was so needed. (2) my mom took me out to Acapulco's for lunch - it was super crowded (something about the Friday lunch buffet) and Sierra misbehaved the entire time. I remember thinking "geez, why can't she just cut me some slack on my birthday??" (3) when we got back from lunch, Emily had called dietary and had them deliver a birthday cake for me and a little cookie for Sierra (like I said, we LOVE Emily). and (4) Dusk and I had take-out Thai for dinner, but we didn't get around to eating until really late after Sierra was in bed, so we just ordered wontons. Then, I had to pump and call the hospital to check on Bodie. Yep, like I said, it sucked.

But, this year, today was SO MUCH better. I got to start the day by working out (a testament to how much more well-balanced our lives have become), I got beautiful flowers from my parents (ok, from my mom - you all know my dad is reading this saying "what? Oh, we got her flowers. How nice" Ha!), I got to eat breakfast with my kiddos and lunch with some wonderful friends (thank you again Amy and Susan for the awesome lunch - I'm so blessed to have you ladies in my life!). Dusk got me a surprise massage on Sunday - and I get to celebrate my birthday tonight with a yummy cake, surrounded by my loves, all together in my home. I am so blessed.

The best birthday gift by far was the realization that our family has really, finally, found our groove. We have settled in and life is good. Bodie has settled down SO MUCH in the past month. He's such a happy kid now. We can leave him with a babysitter finally! His separation anxiety has finally ebbed, considerably. (I know I've talked about his separation anxiety in the past, but seriously, I don't know that I ever really let in just how BAD it is - it was very rough, mostly on me.) Now that he's on a sippy cup, he doesn't need me around to drink his milk (he seriously, even at 14 months, would only take a bottle from me). That means I can go to the gym in the morning and get ready afterwards before the kids wake up and if they happen to wake up before I get back home (7:30 or so), they can hang out with Daddy for a bit - and everyone is happy when I walk in the door. (Trust me, this was a huge step for us.) He'll even play for a bit with his therapists without me needing to be close enough to grab. The joke around here is that the last month has been my reward for putting up with Bodie for the first 15. I jest. Sort of.

Bodie is walking SO MUCH now. When he falls down, he's pushing himself back up to standing instead of just dropping down to a crawl. I have a feeling we won't see any more crawling after the next few weeks. He's definitely choosing to be upright now. He's talking ALL THE TIME now. He says a lot that we can't understand, but what we can understand is "mama, dada, hi, bye bye, ni-night, hep (help), uh (up), dow (down), my (mine), yeah, nono, momo, more, "ah da" (all done), car, cracker, ball, wawoo (water), love you and thank-you (you really have to know what he's saying on the last 2, but he definitely says them)." And he says "MAMADADA" when he wants anything. He used to just say "MAMA" - I guess he's learned that if he screams at us both to get it for him, his odds increase of someone actually responding. The whole language thing is pretty amazing to me, since Sierra only had 3 words at 18 months! We were worried she'd never talk. Given that we literally can't get an word in edgewise at the dinner table these days, I'd say we don't need to worry about that anymore. :-)

Bodie's feeding has finally started to improve as well! I daresay that he has finally transitioned to table food - he hasn't had jarred babyfood in almost 2 weeks now! Praise God! And, for the kid who threw up once a day for the better part of his first 14 months or so, it appears that we have finally moved past that. (We don't know for sure, but we think it was all related to his vocal cord - given how much louder he's gotten recently, we think the throwing up probably stopped because his vocal cord has been healing.) Speaking of getting louder, we were at our home school academy last week and as the kids were doing their presentations, Bodie was talking through all of them. He's the background track on all of the videos now. Nice. My kid, the one with only one working vocal cord, is interrupting everyone's presentations. Go figure.

Bodie and Sierra are playing together so much these days. Mostly, he just goes around behind her, messing up whatever she has just cleaned up. She gets sooooo frustrated. I can't help but laugh - I can't imagine what that's like - working so hard to clean something up only to have someone come behind you moments later and mess it up again! Ha! But it is wonderful to see them playing together, loving each other. I love that they can play together after dinner now - I send them outside to play in the sandbox and with the outside toys while I get the kitchen cleaned up. It's a win-win for everyone!

Sierra is doing wonderfully as well. We just got a letter home from school this week letting us know that she'll be transitioning to the pre-K class on July 1st. While we're of course thrilled that she's developmentally ready for the transition, it's hard for me emotionally to know that she'll now be in the oldest class at her preschool (she's been there since she was a 4 month old in the nursery!). And she's such a good big sister. She's always giving Bodie hugs and kisses and getting toys and food for him. Unfortunately, she's often on the receiving end of his pinching, hitting and hair pulling (he's a bit of brute these days). We're trying to teach him to be gentle. He just laughs, says "gentle" and then pulls him arm back and smacks us really hard. Not sure how effective that is. Ha.

So yes, life has gotten really good. Finally, we're in a good groove and enjoying life. Only took us 16 months to get here. And with cardiac kids, things could change at any moment. But we'll take it. At least we're finally here. We'll enjoy it for as long as we get to be in this stage. We're gearing up for Tahoe in a couple of weeks, so would appreciate your prayers that we all stay healthy and well and that Bodie tolerates the higher elevation. We're really excited.

I'll leave you with a couple of pics of our life these days.
Sierra in the bouncer at cousin Michael's 1st birthday party last weekend - SO fun! Can you see how red her little cheeks were? It was so hot out and she was running around like a crazy woman.
Bodie and Michael having a stand-off. Bodie kept opening up the hood of the car and then Michael would slam it shut. Then they'd stare at each other and start the process all over again. It was SO funny.
The whole family at Michael's party - Dusk and I with the kids, my brother Matt, his wife Val and Michael, and then my parents, Bill and Nancy.
Our little girl is growing up. :-( Her first day as a Froggie...and her last day as a Froggie. (And yes, she wore that crown to school today (along with black shoes and red and black tights to accompany her pink skirt). That's just how we roll around here.) Dusk is going to kill me for including this pic, but thought I'd include it just as proof of how very much we have found our groove. Our life is so together these days that I have time to do things like, I don't know, break out Sierra's hair supplies just to see if we could do piggies in Bodie's hair. Turns out we can. Turns out, he is not a fan. Could be because he kinda looks like a teletubbie. Rest assured, we will not be trying it again. But we had to do it once, right? Right?


Saturday, June 25, 2011

All that glitters...

This weekend, we purchased quite possibly the most important piece of jewelry our son will ever wear. We had been intending to do it for quite some time, but just hadn't gotten around to it. I'm not sure why, but if I'm being honest, it probably has a little to do with some deep seated feelings of not wanting to see my sweet boy with a MedicAlert bracelet on, a constant reminder of how fragile he is. I'd rather just forget about how fragile he is. But the reality is, this kid really needs a MedicAlert bracelet, both for his underlying heart condition and his pacemaker. Although he's with me most of the time, if something were to happen when I wasn't there, or if I was somehow incapacitated, it would be absolutely crucial for medical personnel to have the necessary information on Bodie's condition.(For the record, the tag reads "Pacemaker dependent. Hypoplastic Left Heart Syndrome." with the number for MedicAlert)

So, we did a little research and settled on MedicAlert. We really liked the new-fangled programs that actually give you a zip-drive to attach to a key chain with all of your child's medical records on it, but honestly just couldn't justify the expense (it's quite a bit more expensive than the traditional MedicAlert). Plus, we liked that the bracelets are universally recognized by both medical and lay personnel. So, good old fashioned MedicAlert it is.

We put it on Bodie tonight. How did he react? Well, let's just say that he was less excited than mommy and daddy...

It's a little big on him, which might have something to do with why he doesn't love it. I'll call the company next week to see if we need to size it down. But my guess would be he'll grow into it so it's fine. Here's hoping he gets used to it...


Friday, June 24, 2011

Under Our UmbrELLA

I grew up on the Central Coast of California and my parents still live there, so I know I have a lot of blog readers in San Luis Obispo county. This blog entry's for you. :-)

I recently met a newly expectant mom, Melissa, whose special HLHS baby Ella, is due in September. She's going to have her surgeries at CHLA with Dr. Starnes (Bodie's surgeon and hospital). What makes this story so special is that she's from Arroyo Grande!!! What a small world - to meet another parent of a child with Bodie's extremely rare heart defect in my hometown of less than 20,000 people! I'd say this is a case of God putting us in one another's paths, for sure.

Melissa and her husband, Brady, are holding a benefit called "Under Our Umbrella: A benefit for Baby Ella Beckstead" to raise funds for the enormous hospital bills and relocation costs they have in front of them. The benefit is Friday July 8 at the Pismo Vets Hall. Tickets are only $30 and it sounds like it is going to be an incredible evening of fun performances and entertainment! Please consider taking some time out of your busy weekend to support another amazing little heart hero. If you've been following our blog for any length of time, you know the uphill battle so many of these special children and their families face - won't you help another family out as they prepare for this battle???

You can find out all about the event at Benefit for Baby Ella and you can see an interview with her sweet parents (shown on KSBY today!) here:


Sunday, June 19, 2011

At the point of death

When another heart mom mentioned yesterday the exact number of minutes her heart child had been on cardiac bypass, it reminded me again that I really needed to get a copy of Bodie's medical records. The request for records at CHLA requires the patient's medical ID number. As I rifled through Bodie's medical files in search of that number, I came across one of the discharge reports I'd been given. It was actually an interdepartmental report, typically not given to parents, used when transferring patients from one department to another (say, from the cticu to the step-down unit, or vice versa). In any case, I had somehow landed a copy of the report for whatever reason. I've scanned it many times, but this morning, when I read it again, something caught my eye that had not before. In describing Bodie's condition when he was rushed from the step-down unit back to the cticu from what we later discovered was c-diff, the term "near extremis" was used multiple times in the report. I didn't know what the term met, so I looked it up. Turns out "in extremis" is a latin phrase meaning "at the point of death."

Gulp. I know how serious Bodie's condition is, I know how bad he looked at that exact point in time (I was sitting in the room 3 feet away from him as the medical team was rushing around, trying to decide if he could wait until he got down to the cticu or if they needed to intubate right then and there) and I know how much of a miracle it is that he's still here with us. I often casually mention the three times "we almost lost him." But, I don't know, it's just different to read in black and white a medical professional's opinion that Bodie was almost at the point of death. It quite literally took my breath away.

What a contrast that dark time a year ago is to the amazingly full of life son I have now - the one who was all ready for our picnic at the park yesterday, where he crawled through the grass with a huge grin of wonder and chased birds...

...the one who ate 4 or 5 helpings of mama's dinner last night, all the while shoveling it in and saying "more, more" with this goofy grin...
Today, reflecting upon that report, I am reminded again how very blessed we are. Praise God for the miracles he has given to our son. We pray for many, many more. Thank you all for your part in praying for these miracles.

Friday, June 17, 2011

A few hiccups

Bodie had a cardiology appointment today. An unplanned cardiology appointment. In the world of cardiac kids, any reference to an "unplanned" medical event is never good, and I think an unplanned cardiology appointment is darn near the top of things you don't want to have to experience.

But, well, Bodie is Bodie and likes to throw curve balls. For about the past week and a half or so, he has been getting a little sweaty after being really active. Not super sweaty, more sticky, I guess you would say. Some heart kids are by nature a little (or a lot) sweatier - it's often a symptom of the underlying heart condition. Bodie is not one of those kids. He's normally not diaphoretic at all. And sweating can be a major indicator of heart failure. His eating hasn't been as good lately and his sleep has been a little disrupted. All things that could be teething, a residual response to his MMR vaccine (he's now 16 days out, but the MMR has a longer window to show symptoms), normal toddler fussiness...or, you know, congestive heart failure.

So, you could say it struck some serious fear into mama and a call was put into his amazing cardiologist. He wasn't scheduled to go in until next month, but she squeezed us in. He, like usual, was thrilled...until the pulse ox machine came out. We were able to distract him with bubbles to get a good pulse ox, but holy moly did he lose his marbles with the blood pressure. I mean, the kid would NOT stop screaming. The nurse (who is supposed to get a reading on all 4 limbs) finally gave up after only 1 arm - and that was nothing short of a miracle. Then, she tried for an ekg and he was a hot mess. As fast as she could get the stickers on, he was ripping them off and hurling the leads at her, all the while thrashing, kicking and screaming. She finally gave up. He wasn't much better with Dr. Kim, although he was friendly enough until she and her nice resident tried to listen to his heart. He kept pushing their hands away and saying "bye-bye."

We finally got him to calm down long enough for an echo and got the ekg when he was still relatively calm after the echo. The good news is that his heart function has never looked better!!! Praise God! His triscupid valve leakage is still trace, which is fantastic. His aortic valve, however, is leaking a bit more than it has in the past (it was trace and now it's mild). She wasn't super concerned, but wants to go back up on his Enalapril to see if that helps. She said we'll just watch it and if it does end up needing to be repaired at some point, they might just do it during the Fontan (which is still a couple of years out, hopefully).

So there you have it - whatever was causing the little bit of sweating doesn't appear to be heart function related, which is GREAT news. Bodie decided to celebrate by going on a "Seek and destroy" mission in the cardiologist's office. What kind of terrible parent would let their child do this, you ask? The kind of parent who is utterly exhausted and so grateful that her child is not screaming at the top of his lungs, that's who. Oh, and it wouldn't kill them to babyproof these cabinets, right?
Surveying his hard work...
Thanks so much for all of your prayers for Bodie, as always - we covet them and we know they make a difference in how well our little warrior is doing!

Sunday, June 12, 2011

Meet Momo

THIS is Momo... If you know our family, you know Sierra has Tigger. Well, Bodie has officially decided on a lovey and it's "Momo" (short for monkey - mama wanted something Bodie could actually say, so he could easily ask for it). I'll be honest, we've been encouraging a lovey for awhile (it truly was out of self-preservation for mama, because, well, let's face it, I was his lovey for pretty much the first 15 months of his life; mama needed a pinch hitter). And in the last month, he has definitively picked one, and loves on this thing so much these days. It's so stinking cute. And, sentimentally , I am so glad he picked the one he did, because Momo has a lot of history with our little man...

Post-Op Norwood
(his nurses thought his monkey was so cute, they'd always arrange him in cute positions around Bodie)...

Post-Op Shunt Revision / Pacemaker MRSA Admission
One of his first car trips on "the outside"
Post-Op Glenn
First trip to Palm Springs (you can see Momo's eyes on the bottom right of the pic - and the aforementioned Tigger at the top)
Assuming his now usual position, snuggled in Bodie's arms, as Bodie's sleeps tonight...
The thing is, as often happens with belongings of any child after the first, we truly have no idea where Momo came from. We don't think he was a Sierra hand-me-down, but I suppose someone could have given him to us as a gender neutral gift before she was born (we didn't find out the sex of either kid until d-day). But we think someone gave it to us specifically for Bodie. So if you did, would you mind telling us? Because we'd sure love to give you a big THANK YOU. Bodie loves his Momo. And we love seeing him so happy.

Monday, June 6, 2011

Walk like an Egyptian

I suppose a more accurate description would be "Walk like a drunk frat boy," but I don't know, it somehow seemed inappropriate to compare my toddler to a drunk frat boy. (Though the comparison of having toddlers in the house has definitely been made to living in a frat - see this blog if you want a laugh.) But, well, see for yourself...

Although he's taken a step here and there over the past few weeks, he didn't really get it together to walk for real until tonight!!! Yep, you can say we're pretty darn proud right about now - our miracle boy is walking at 15 1/2 months - a little late, but well within the "normal" range! Yay normal!!!


Friday, June 3, 2011

Innocent Questions

Yesterday, we were playing with friends and I was sitting on the floor doing a puzzle with Bodie (who, as an aside, if you ever need a puzzle-piece taste tester, is quite good), Sierra and some of the little boys. One of the little boys looked over at Bodie, and then me, and asked "Mrs. Bennett? Does Bodie really have half a heart?" "Yes, he does" I replied. And, because he's 5, his follow up question was "why?" I explained that was how God made Bodie. And, again, because he's 5, his next question was "but why?" I explained that God makes each of us unique, and some of the things that make us unique can be easily seen from the outside, and some of them are hidden deep within us. We went back and forth for some time until I finally came up with an answer that satisfied his curiosity - or he just got tired, I'm not sure which. I think it was somewhere around the time I explained that God wanted to use Bodie as a living testimony to his grace, and that God had a special plan for Bodie and that's why he gave him a half a heart.

The conversation made me so sad. Not because this sweet boy was asking - I mean, he and his whole family have been praying for Bodie since before Bodie was born, so of course, he's going to be curious and want to understand why God made Bodie the way he did. But it made me sad because he was asking questions I don't have answers to. I don't know why God only gave Bodie half a heart. I wish every single day that things were different, that God had chosen to give him a whole heart, that my son would never have to face the limitations and life decisions that will always be governed by having a less-than-perfect heart. But God chose to use my son in a mighty way, and his half a heart is what is allowing God to do exactly that. The Christian side of me is excited, thrilled to be a witness to that, for my son to be a living, breathing testimony to the sanctity of life and God's greatness. But for the human side of me, the mother who realizes what makes her son special will likely be what takes him from her prematurely, and just wants to watch her son grow up big and strong and have a family of his own someday, it's a hard pill to swallow.

And the other reason the conversation made me sad is because, now, Bodie isn't old enough to understand what this sweet little boy was asking. But someday he will be. Someday, he'll be sitting there in full comprehension as other kids look at him with a quizzical look and ask why he has a half a heart. Someday, he'll be "the different one." And that's hard, because I know a time will come in his life when he will want to be anything but the different one. I can only hope and pray that, when that time comes, Dusk and I will have instilled in him such a strong sense that God made him for a special purpose that he'll be able to weather the questions and the uncertainty.

In the meantime, we just continue to love on our own little miracle and try to raise him as "normal" as possible. My dream is that, when he's bigger, and people ask about his heart, he'll just shrug his shoulders and say "yeah, I have a half a heart. So what? Let's go play..." :-)

Bodie says he's aok with this plan...