Day at the park (Bodie's favorite!):
Put both kids down for their 1pm nap (they share a bedroom). When Bodie woke up 90min later and I went in to get him this is what I found. Now, I know I was pretty tired, but I'm almost 100% sure Bodie was the only thing in the crib when I put him down.
I'm guessing this is my little culprit:
Movie night at the Bennett's - Toy Story 3!:
Well, Toy Story 3 for Sierra...search for the snack bowl for Bodie (I did mention he likes to eat, right?):
Checking out windchimes with daddy:
...how the journey to mend our son's broken heart changed our family forever...
Thursday, December 30, 2010
Normal is as normal does (Part 2)
Day at the park (Bodie's favorite!):
Normal is as normal does (Part 1)
Bodie had a ROUGH start. A ridulously rough start. 3 open heart surgeries, 2 cardiac catheterizations and long hospital stays that actually had nothing to do with his cardiac condition - all before he turned 7 months old. But, once we got past that point (honestly, once got past his MRSA admission), life was been wonderfully, blissfully NORMAL. Am I hiding his medically fragile condition somehow, to try to give the appearance of normal? NO. Am I normal? I'm getting there - I'm starting to finally relax and not freak out quite so much about him. But Bodie? He's pretty dang normal. How so? Well, here's a peak into our lives and you can decide for yourselves...
He is army-crawling everywhere, but his favorite is our kitchen floor - so gross. No joke, tonight, he insisted on crawling around the kitchen floor while Dusk was making pizza - at one point, I looked down and noticed he had flour ALL OVER HIS SHIRT AND PANTS. Ah well, at least it's less for me to mop up later, right? His singular mission in life these days is to put anything and everything in his mouth - and even better if it's a choking hazard. Last week, in one afternoon, I fished out the foil from a reeses peanut butter cup wrapper, carpet fuzz and a piece of tinsel (mind you, we've never put tinsel on a tree in this house, so yeah, he's pretty hard core to find stuff like that). Full crawling is still a little ways away - he won't get up on all 4's by himself, but if you put him up on all 4's, he will start rocking like he's just raring to go. He can also sit unassisted for long periods of time, and loves to sit and play with his toys (as long as someone, preferably mommy or sissy, is sitting right next to him and playing with him - he's not so good at the whole independent play thing). His current favorite is taking the blocks out of his shape sorter and then crying until someone put them back in for him, only to start the whole process all over again. He claps, he waves, he gives slobbery kisses to mommy (just started that - it's so cute). He also loves to go for walks, especially to the park. He's babbling all the time - dada is his current favorite. Dusk is loving that one. :-) We're finally starting PT, twice a week, just to catch him up in his gross motor skills.
THE MEDICAL STUFF
The future? I don't know. The reality is that there is a very good chance Bodie will need a heart transplant someday. Maybe soon. Hopefully not. The fact that he has his genetic arythmias and some thickening of his right ventricle increases the odds of him needing a transplant, they think. The reality is that no one knows. Every hypoplast is different and his doctors have never seen a case like this. All of his extra quirks may not make any difference to his long-term prognosis. But we do know that the oldest survivors with HLHS are in their 20's and some are doing quite well without even having needed transplants. So, we have great HOPE for Bodie. This field of medicine is moving at lightning speed. 20 years ago they were just starting these surgeries and most patients who underwent them didn't survive. Now, many centers have survival rates upwards of 80 and 90% with these surgeries. The landscape of treating HLHS has changed dramatically in the last 20 years. So why would I worry about what might happen 10 or 20 years from now? I don't. We'll get there when we get there.
I don't say this to brag about how great Bodie is doing, because I know, as with all cardiac kids, things could change on a dime. And they have changed before for Bodie. But that's true even with heart healthy kids. We heart parents just have the luxury of understanding how quickly things could change, so we appreciate each day a bit more. But I say this to give HOPE. Although the beginning, almost without exception, sucks, it can get better. Kids with HLHS can and do lead "normal" lives. I know many others, like Bodie, who really are doing great. And, let me make it clear, I know those with feeding tubes or on oxygen or who have to have daily injections to avoid blood clots, or have even had strokes (kids are remarkably resilient) and they, too lead, normal lives. They are cute, sweet and vibrant children. No fancy schmancy language. It's that simple. So take that, Baby Center poster. :-)
Monday, December 27, 2010
How was your Christmas?
On Christmas Eve...our sweet little model
The whole family at our church's Christmas Eve service Mommy and her sweet little guy Little man becoming obsessed with the guitar - and making his daddy oh so proud
Christmas morning (sorry - no pics of Mr. Grumpypants - he opened a few presents and then spent the better part of the morning crying because I wouldn't let him eat candy, play with scissors or eat wrapping paper)... Sierra modeling her new glasses and Christmas jammiesSuch a fashionista... After Christmas...a trip down to Dusk's grandma's house, so she could meet Bodie!
Kisses from Great Grandma Vickery...
Attempt #1 at a picture of Great Grandma with both kids...
Attempt #2, with daddy included, went a little better... After visiting Great Grandma, we headed to meet a fellow braveheart, Travis. Travis also has HLHS and a pacemaker, just like Bodie! He's 14 months old and his mom Nicole and I have gotten to know one another through online HLHS support groups, but this was the first time we had met in person. It is SO inspiring to meet a fellow heart warrior who is doing so well! Travis has got to be one of the cutest little guys I've met (and he just became a big brother last month to cute little Addison!)
One last pic of Bodie smiling with mama...
Thursday, December 23, 2010
Friday, December 17, 2010
Anyway, Bodie has been a crankster and not really wanting to eat for about a week now. (He still eats his solids and noshes on crackers like they're the last ones on earth, but hasn't been interested in his bottles.) We initially chalked it up to teething, since it looked like he has a few about to pop through. Then, on Wednesday, he really stepped up the crankiness and a runny nose started. Still teething? Possibly. But seriously, if that's what it is this kid has a ridiculously low tolerance for pain - he was so cranky on Wednesday and Thursday you would have thought someone was tearing him apart limb from limb. Soooooo frustrating. And he's really producing a lot of mucous, so we're thinking it's probably a cold.
Then, this morning, even though he started perking up (i.e. he let me set him down for more than 5 seconds), his sats took a pretty big dive. Although that tends to be his pattern (he'll be symptomatic but with good sats for a few days, and then he'll be over the hump symptom-wise and his sats will drop), we were concerned enough to call his cardiologist. We were scheduled for his monthly appointment Monday anyway, so she just bumped us up to today.
So Bodie got his full cardiac workup today - length and weight check, ekg and echo. Great news all the way around!!! As far as his current symptoms, although he was wheezing in the office, his sats were fine and he sounded clear. She just told us to keep up with the breathing treatments (yep, Bodie was thrilled with that one - again, this kid is soooooo overly dramatic when he doesn't like something). His length (28.5in) and weight (18lb10oz) were both great - he had jumped to 10% on the growth chart!!! (And, if he hadn't been refusing his bottle for the past week, he would have been at 19 pounds (which is what he weighed last Monday) and would have been at 25% on the growth chart! I'm so proud of our little guy for moving UP the growth chart - at this stage in the game, that's a huge deal!)
His EKG looked great and, in the words of his cardiologist, "his function looks even better than last time!" FANTASTIC!!! So, the best news of all (besides the fact that we didn't get sent to the ER, of course) is that we're going down on meds (always music to a heart mama's ears)!!! Since his function is great, we're dropping the Digoxin. And since he's on a baby dose of Propanalol and we're not convinced he needs that, we're dropping that as well! So, he's now down to only 3 meds - Aspirin (1/2 baby aspirin once a day), Enalapril (2x/day) and Sildenafil (3x/day)! And because I combine the Enalapril and Sildenafil into the same syringe (and throw Aspirin in as well), he only has 3 syringes a day now!!! That is sooooooooooo far from where we were post-Norwood, when I want to say he was on maybe 15 syringes a day. Crazy times, I tell ya!
I also got an idea of the timing of Bodie's Fontan. I asked his cardiologist when we would start thinking about it. (I blame my fellow heart moms, by the way, for making me go down that road - one asked her cardiologist recently and it got me thinking.) Anyway, apparently, there's a difference of opinion on timing for the Fontan. CHOP (really the leader in the area of hypoplasts) is doing a standard of 18-24 months. Stanford, on the other hand, prefers to wait until 4-6 years old. And CHLA falls somewhere in the middle, at 2-3 years. (Although CHOP is definitely #1, both Stanford and CHLA are top 10 centers as well.) So why the difference of opinion? (Keep in mind when reading this next section that I am NOT a medical expert - this is just what I took away from my conversation with Dr. Kim. This is an area of a lot of debate right now.) Dr. Kim said the phrase she's always heard to describe it is the difference between Blue Motorcyles and Pink Bicycles. Glenn kids are like Blue Motorcycles - they're not satting that high (hence, they're "blue"), but they have tons of energy and can generally keep up and do what they need to do. Fontan kids, on the other hand, are saturating near 100% (hence, they're "pink"), but they tend to have exercise limitations and generally move a bit slower. So, the biggest argument for an earlier Fontan is to get kids to optimal saturations as soon as possible - a lot of studies have shown that development delays may be caused by being at suboptimal saturation levels for so long. The argument on the other side is that another 2 or 3 years won't make that big of a difference and it's best to leave the kids with Glenn phsyiology as long as possible, provided their sats allow for this. Dr. Kim prefers to follow Stanford's guidelines, so, provided Bodie's sats allow for it, we'll probably be looking at a later Fontan, closer to 3 or 4 years old. But, things can always change and every hypoplast truly charts their own course, so you never know. But it's nice to know right now at least that another surgery should be further off in the future. Praise the Lord for that!
So, all in all, it's been an emotional week to say the least. The good news (besides today's fabulous cardiology appointment) is that Bodie seems to be doing better now and getting past whatever was bothering him - cold or teething. As you can see from the below picture, he's not the only one exhausted from the emotional turmoil each cardiology appointment brings upon us. After our appointment, he slept the entire way home, slept through me stopping the car, picking up Sierra and getting her back into the car, and getting home, getting Sierra out of the car, and taking pics of him sound asleep. I took him inside, he took a bottle and then went back to sleep for a bit. Silly boy...
Ok, so it's possible that I'm projecting and he's sleeping from exhaustion from having been miserable for a week and just having had an invasive doctor's appointment, but I'm going with he's emotionally exhausted. That way, I'm not the only one. :-)
Monday, December 13, 2010
Big boys don't cry
Can you believe how big this kid is getting? Dusk says he's growing like a weed. My response? "yeah, like a fat weed." He has gained a pound in the last 10 days - he's now 19 pounds! It's awesome! I'm blaming it on the Ritz crackers, which he has just discovered in the last week. They do a remarkable job of
shutting him up appeasing him when he's not so happy. ;-)
(He outgrew his carseat in length at the same time Sierra outgrew her carseat in weight, so he got her old carseat and she got a nice new(er) one. Such is the life of the 2nd born, I'm afraid. :-) )
Sunday, December 12, 2010
If you're happy and you know it, clap your hands
And, in other milestones, he's also SITTING UP all by himself! Just in time for his 10 month birthday on Thursday, he's not just tripoding, but really, really sitting! Up until this weekend, whenever we'd try to get him to sit up, he'd just topple over - but he's now sitting and will steady himself when he starts to fall. He still can't do it for very long, but we're so proud of him that he's now doing it! Go Bodie! Here's a pic of him sitting up at church this morning... And one of him attacking his cousin Michael in the nursery...
And, just for kicks, one after the fact...
Take this pump and shove it
10 months, many, many, many hours, ridiculous amounts of pump parts washed and santitized over and over again, and 7,242 ounces later...I am officially putting the pump away. Some women are lucky enough to have a love-hate relationship with their pump; mine was just 100% hate-hate. Honestly, this probably ranks up there with passing the CPA exam and running my first marathon as one of my proudest accomplishments. NEVER did I think I could stick it out this long. But I did, and I am so proud.
It is kind of with mixed emotions that I am done pumping. Don't get me wrong - I HATED pumping and couldn't be more excited to be done with it. But, this will be the first time in 4 1/2 years that I'm not pregnant, breastfeeding or pumping. And, if I include the time we were trying to get pregnant, it's been about 5 years since I wasn't trying to get pregnant, pregnant, breastfeeding or pumping. Kind of a big shift to be DONE with that and to have my body be only mine. A new phase in life, I suppose - and I tend to get nostalgic about new phases in life. Truly, I loved being able to provide for my children in such a natural way. I feel very lucky I was able to nurse Sierra as long as I did and pump for Bodie as long as I did.
I have almost 2 months of milk stored for Bodie in the deep freeze, but because he's recently developed a serious preference for formula (I know, he's a weird kid), I may be able to do 1/2 formula & 1/2 breastmilk and get it to last all the way through cold and flu season. I'd like to give Bodie a little extra immunity to get him through.
Sadly, I think Bodie will be the most disappointed about the pump being put away...
Friday, December 3, 2010
Finding my way to normal
You spend your child's first months of life literally holding your breath. Just waiting for that Glenn to get here. The time before the Norwood is, honestly, just a great big blur. You have a tiny newborn child you hardly know and you're pretty much 100% reliant on the doctors and nurses to tell you whether there is something wrong with your child and how to fix it. You're hoping and praying this child you've hardly bonded with (if you've even bonded at all - it's hard to explain if you haven't been there, but you're really torn between loving this child (of course you love them, they're yours) and wanting to distance yourself since you know there's a distinct possibility you will never bring this child home from the hospital) will make it.
Then, if you're lucky, you make it home from the Norwood and you're in the "interstage" as it's referred to, the time between the Norwood and the Glenn. The interstage is the riskiest time for a single ventricle child, the time with the highest mortality rates. I don't know about other hospitals, but I know at CHLA, your odds of making it home from the Norwood (90% survival to discharge) are actually better than your odds of making it from that point to the Glenn (85% survival from Norwood discharge to Glenn). That's a really sobering statistic. Kids during the interstage are just plain fragile. They're hospitalized for missing more than one feed at a time or because they have a runny nose, and they pass away from colds or the flu, things that a heart healthy kid wouldn't bat an eye at. During the interstage, you're VERY closely followed by a cardiologist, and you, as a parent, are monitoring absolutely everything you can. You're monitoring "ins and outs," checking sats regularly if you have a pulse ox (many docs will send you home with a prescription for one) (we had Bodie on continuous pulse ox overnight and during daytime naps), you're weighing daily and consulting your cardiologist if more than a couple of days go by without weight gain. You're likely administering a crazy amount of meds. You're watching your child like a hawk for the slightest change in feeding patterns, or change in color, or change in sleep patterns. All things that change on a daily basis for a heart healthy kid, but which can mean a shunt is clotting off or narrowing in a post-Norwood child. It's mind boggling the amount of precision and effort required to keep these children alive between the Norwood and the Glenn.
Then, if you're lucky and make it to the Glenn, the whole game changes. Post-Glenn, kids are generally incredibly stable. They don't go downhill quite so quickly, often giving warning signs for days, weeks or even months before things reach critical levels (as opposed to post-Norwood, where you can literally be talking hours). Instead of seeing the cardiologist weekly (with bi-weekly echos), you're seeing them monthly, bi-monthly and eventually even less frequently than that. Weight gain can often still be an issue for these kids (they're cardiac kids, after all), but you don't need to monitor food intake or weight as rigidly. A cold won't necessarily entail a hospital admission. Yes, single ventricle kids by definition are "medically fragile" and doctors will be cautious because of it (as we saw when Bodie was almost admitted for a possible pneumonia), but it's just different after the Glenn. They're, for the most part, "normal."
Emotionally, I'm there. I'm no longer expecting the other shoe to drop. I mean, I know it's always a possibility (there simply are no guarantees with cardiac kids), but I'm more successful at pushing that thought to the back of my mind rather than letting it permeate my outlook. I figure we'll deal with issues when they come up and can monitor him super closely again if that happens. In the meantime, we can let Bodie be a normal kid. We won't keep him on house arrest (we never have other than immediately post-op), but we can certainly be a little more lax now in terms of letting him have playdates and get out there and just enjoy being a baby). I am just trusting God for Bodie's future.
But practically speaking, I'm not sure how to get there. I am still putting Bodie on continuous pulse ox at night, even though he's consistently been satting in the low 80's for over a month now, with the exception of when he's sick. I am still weighing Bodie daily and panicking when he has a few days where he doesn't gain. And I am still printing out my excel chart and putting it up on the fridge every day to mark, down to the ounce, how much he eats, how many diapers he puts out, etc. So my question is how to get from crazy-hovering-have-to-monitor-every-little-thing to normalcy? I don't really know. Life was in such a crazy state for so long (remember that Bodie didn't have his Glenn until he was 7 months old, so we had a long time for that to become our regular routine). I realized last night as I was climbing into bed at 12:30am (and decided to wake Dusk up out of a sound sleep to discuss this, bless his heart) that it's a habit and one that I need to break for my own sanity as well as my family's well being.
I know a lot of fellow heart moms read my blog. Any advice for how to get from Point A to Point B? I'm getting there - today was the first day I didn't put the excel spreadsheet on the fridge. Baby steps. Would love some other recommendations! Other than that, please just pray for me and our whole family as we adjust into our new normal. :-)