Monthly Archives: May 2014

Let’s Try Something Different

So as you know, Nolan is still on a feeding tube and that has been an immense challenge for us (and him).  After Nolan turned 1, he was moved from formula to PediaSure.  At first it was pretty convenient: they came pre-mixed in little bottles: just open, pour, and start the feed pump.  Otherwise, though, it wasn’t too great.  Nolan spit up a ton while getting PediaSure…and the stuff smells disgusting, especially the strawberry one…BLECH.  So after awhile doing this, Bekah came up with the idea of seeing if we could give him a blended diet.  After all, Grant was eating regular food…why can’t Nolan?  Not to mention that PediaSure has a bunch of sugar and other questionable ingredients…we wanted to know just what we  were putting into him.

The G.I. team eventually went along with the idea, which required changing out his g-tube to a little larger size.  We got a Blendtec blender, which is supposed to be one of the best, and we armed ourselves with some recipes.


His feeds began to look like blends of chicken, spinach, quinoa, and olive oil, for example.  It was bright green and weird-smelling, but at least we had control over what went into his body.  The biggest challenge is that we can no longer use the feed pump for blends: instead we have to push it through with large syringes…so no more “set it and forget it,” we need to take our time doing it.  While we acclimated to the new routine, we still used PediaSure for some feeds, but focused mostly on the blends.  The Blendtec worked GREAT, just as advertised.  It blends everything completely (and is even featured in some pretty hilarious “Will it Blend?” videos online).  Nolan started to put on some weight and it seems like so far, so good.

We know this is a lot more work than the PediaSure, but again we want him to – in some way – experience what it’s like to have the same food we’re eating.  It’s a lot of work but we’re hoping it will pay off.

So those heart parents with kids on g-tubes: how many of you have tried a blended diet with them?  Is it working well for you?  Do you have any good recipes to share?


I Can Has Empathy?


Ok heart parents: did you struggle with empathy after your heart baby was born?  Or is it just me and I’m a total nut?  I remember having to go back to work after Nolan’s first surgery and I was like a total beast.  I didn’t want nothin’ to do with nobody.  I felt like everyone was in my face and even worse I didn’t want to hear about anyone else’s “stuff.”  I remember the first co-worker that would yawn and say, “Oh man, I’m tired,” and I’d be like “YOU DON’T KNOW WHAT TIRED IS! BLARRRGH!!!”  Yeah it was a little bit outta control.

BUT…once I started getting a little more understanding of this heart parent thing, I started to learn to change up my thought process.  It’s hard to go through the initial stages of this experience and NOT think solely about your situation, because it’s just so stinkin’ huge.  After awhile, though, I started to be even more aware of the difficulties people could be going through.  More importantly, everything’s relative.  No, not everyone has been through what I’ve been through…but just because it’s different doesn’t mean it isn’t something difficult.  I used to think I was pretty thoughtful, but I think being a heart parent has really made me more thoughtful.  More importantly, as you focus on others, you start to be more thankful for the things you have and the problems that you perceive as so huge, just might not be so huge after all.

In Social Intelligence: the New Science of Human Relationships, Daniel Goleman writes, “Self-absorption in all its forms kills empathy, let alone compassion. When we focus on ourselves, our world contracts as our problems and preoccupations loom large. But when we focus on others, our world expands. Our own problems drift to the periphery of the mind and so seem smaller, and we increase our capacity for connection – or compassionate action.”

It’s true…you should give it a try.  While I think it’s important for others to walk in a heart parent’s shoes, I think it’s VERY important that we – as heart parents – walk in others’ shoes and not forget that our issues aren’t the ONLY ones that exist.  Let the struggles you’ve been through make you a better, more compassionate person.  You’ll learn to value people and have a heart for what they’re going through.

Ok one more quote:

The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” ~Elisabeth Kubler-Ross

Practice some empathy today!

Empathy Meme



Silos.  The bane of healthcare.  What do I mean?  I’m pretty sure I’ve discussed it here on this blog before, but the term silos refers to different groups/providers/doctors/hospitals/etc operating within their own little kingdom…or silo.  And when there’s silos, no one wants to step on the other’s toes or even make an attempt to cross their own border to benefit their patients.  For example: if your heart baby has feeding issues, or physical issues, or development issues, the heart program feels it doesn’t need – or want – to be involved in that.  Hearts and hearts only.  You’re on your own to deal with the other stuff so good luck.  Or a GI Team won’t communicate well with a heart team.  Yeah, it’s a big problem and I’m sure it’s one you’ve run into as a heart parent.  If you haven’t, consider yourself lucky.

Either way, how do we fix the problem of silos?  How do healthcare providers stop their fear of stepping on other people’s toes and get into a mode where they work together for the benefit of a patient?  If you ask me there’s two methods: 1) Parents making a big ol’ stink about it and not letting up and 2) Make it about the money.

1) Parents: I like to tell people that heart parents are like an army.  We band together and we stand up so the best is done on behalf of our children.  We just have to keep it up and keep pushing.  Don’t accept the silo method!  Heart teams should be helping advocate for things like feeds, development, education, etc.  No more of the “We only do the heart” stuff…

2) Money: this is one where we have no say.  But believe it or not, this is the biggest shakeup for healthcare.  I once had a professor that often said “It’s not about the money, it’s about the money.”  And – come on – you know that’s true for A LOT of organizations, not just healthcare.  The good news for us is that healthcare reform has forced a move from volume-based healthcare to value-based healthcare.  So medicare/medicaid won’t pay merely because a service is being given: now the government wants healthcare providers to provide a highly-recommended experience for their patients…or else you’re in trouble.  How?  Money.  Medicare is now withholding 1% of reimbursements from hospitals – which could mean tens of millions of dollars – and it can be earned back through…patient satisfaction.  A-HA!

So if I were a betting man, I’d bet that the silo method is going bye-bye thanks to our friendly neighborhood big government.  Don’t get me wrong, this patient satisfaction movement isn’t ANYWHERE near perfect or practical, but I think some good can come from it.  It has to.  But we as heart parents can’t sit back and let the government do all the work: we need to keep pushing.

So tell me, heart parents: have you had any experience wrestling with the silos?  What has worked for you?

Team Nolan T-Shirt Fundraiser!

Hey friends,

This is a totally shameless plug, but I wanted to let you know of a fundraiser that will be running until June 5th.  We are selling some awesome Team Nolan shirts via Bonfire Funds.


There are unisex adult t-shirts, children’s t-shirts, long-sleeve shirts, and hoodies available.  Shipping for shirts is only $5, no matter how many you buy.

Being a heart parent is expensive; there are always bills, costs, and needs.  Everything we raise with this fundraiser will help us continue to provide awesome care for Nolan and to help with family costs.  If you could find it in your heart to support us by purchasing a shirt, we would be VERY thankful…and I know I will be excited to know a supporter somewhere around the country is rockin’ some Team Nolan gear!

You can get your shirts here:

Thank you, readers…you guys are awesome!

Back at it: a Nolan Update

Hey friends!  Don’t worry, I didn’t forget about you!  It’s been a busy little while for us, so I wanted to give you a quick update on everything that’s been going on.

First, I got a new job!  It was a transfer to the hospital and it’s been a great opportunity to be able to work with our patients.  I think my experience with Nolan is going to be a great asset there.

Nolan has been doing REALLY well: his weight has been creeping up ever so slowly (he’s over 19 pounds now) and a lot of the physical therapy that he hates so much has been paying off.  In March he finally began crawling!  At first he would do a ton of crying and whining whenever he would craw, but then he would crawl a little further and further each day.  Then I think it occurred to him that that “annoying” crawling was getting him places.  Then he was OFF.  The kid is all over the place!

The next step was pulling up and standing to coast along furniture.  He actually took to this rather quickly and is a pro:


As long as he’s holding onto something, he’s a walking fool.  If you want to see a video of him using his little walker, go to Nolan’s Facebook page.  So now that he can coast, the next step is balancing and walking on his own.  He’s actually doing well with that too: physical therapy is now working on helping him stand on his own, then holding the back of his shirt, to show him he can stand and walk without anyone holding his hands.  So far, so good…I imagine he’ll be walking real soon!

Feeding is going well with him too, especially lately.  In a usual week, we’d be lucky to get Nolan to have a couple spoonfuls by mouth…in the whole week.  And a lot of it would be through trickery.  Lately, though, he’s been much more interested in eating.  He’ll sit at dinner and eat 5 or more spoonfuls of food in one sitting.  And he’s been doing this practically every day.  I know 5 bites of food isn’t a lot, and he still has a long way to go, but compared to 2 bites a week (or sometimes a month), this is a major win.  I’m hoping he keeps it up: it would mean he’s closer and closer to getting rid of that G-Tube.

Finally, after like a billion ear infections, Nolan finally had some ear tubes put in.  I think it’s made a huge difference: he’s been less fussy, less sick…all is good!

Still a lot of work to do on our little guy: he’s still going to physical therapy 2 times a week and speech therapy 2 times a week and will soon start occupational therapy…but things are paying off, and I think the rest of this year is going to be a great one for him!