Category Archives: thankfulness

Thankfulness pt. 3: My Heart Warrior

This is part 3 in a series about thankfulness.

My Dear Nolan,

This Thanksgiving, and as we approach your 2nd birthday, I can’t help but reflect constantly on how far you’ve come.  This year you’ve crawled for the first time, you walked for the first time, climbed for the first time, ate multiple feeds by mouth for the first time.  You are an amazing little boy!  I remember the fear that gripped me when we found out about your special heart and the even stronger fear when we left you in pre-op for your first heart surgery.  I worry about the struggle to get you off your g-tube, it saddens me that you can’t eat the snacks the other kids eat at church daycare, and it used to pain me to hear your screams and cries when we’d practice physical therapy just to get you walking.  I wish your life could be toys and games, not appointments and therapies.

I wish I could understand what it feels like to have a single ventricle…does it feel funny/weird?  Is it exhausting?  There have been many times that I thought – if I could – I’d give my right arm, I’d walk backwards everyday, I’d give up every Yankee game in existence, heck I’d even eat sauerkraut daily if it meant you could have a whole heart.

But you know what?  You wake up daily with a smile and joy that dwarfs those of us with complete hearts.  You survived two serious heart surgeries and everything involved with them.  You went from a kid who couldn’t even sit up to a little ball of energy who walks around the house and throws tupperware around.  Every day you wake up you beat the odds and show me what toughness and bravery really mean.  You teach me to look on the bright side, to find the important things…and to be joyful.  You’ve taught me not to say “Woe is me, this is too hard,” and instead say, “Look how far you’ve come!”  You have one heart surgery left, and I have no idea how I’m supposed to explain it to you, how I’m supposed to explain that it will hurt but will help you live a great life.  But you know what?  We’re gonna get there and get through it together…as a family.  There will be lots of questions that I may not be able to answer, but I promise I will work hard to find those answers.  You’re not at a disadvantage, rather you’ve been given the chance to be extraordinary!  I want you to grow up and just love people, and care just as much for those who are going through tough times.  Show them how you’ve kicked CHD’s butt and be an example for never giving up.

So now, instead, I think I’d give my right arm, I’d walk backwards everyday, I’d give up every Yankee game in existence, heck I’d even eat sauerkraut daily if it means you’re going to have the best life possible, in spite of your special heart.  I love being your dad…it’s an honor to be your dad.  It’s hard work, but your smiles, your laughs, and your gibberish make it all worth it!  Your mom and I will continue to fight to get you the best life, the best care, and all the love a little boy – CHD or not – could possibly get.

So this Thanksgiving season, I want to thank you – Nolan – for teaching your old man how to be brave, for teaching me how to fight for you, for teaching me never ever to give up.  Thank you for giving me real perspective on life.  Thank you for the opportunity to meet and help families just like ours.  Thank you for being – pound for pound – the toughest human being on earth.  I can’t wait to see the places you’re going to go!

Love,

Dad

UggaMugga

Ugga mugga!

Advertisements

Thankfulness pt. 2: My Family

This is the second entry in a series about thankfulness.

What would I do without my family?  We’re like a basketball team…but with only one tall player.  And I love them all.  Today’s post is a big thank-you to the rest of my family:

Hudson

CoolDude

Oh this kid.  My oldest and most hilarious.  I can’t believe how big he’s getting!  He’s figuring out this whole big brother thing, but he’s showing glimpses of absolutely adoring his brothers, even though he gets annoyed when they steal his stuff.  Such will be our life for MANY years to come.  I really enjoy watching him grow and all the things he’s learning.  And I just believe how hilarious he is, whether it’s his insanely imaginative imagination or him replacing “It’s Time to Dance” from Yo Gabba Gabba with “It’s Time to Fart.”  Hudson is also a wealth of safety advice like “Don’t stand next to a volcano.”  He’s so loving and smart and he taught me how to be a dad, and I just love him so much.

Grant

GrantPantsHead

Nolan’s twin brother and technically the youngest of the 3 boys (by 2 minutes!).  He is a funny little ball of craziness, who loves to dance and wear other people’s shoes around the house.  Since he’s been in preschool this year we’ve discovered that he really likes art…loves to paint and color…so maybe we have a little artist in the house?  I love to hear his “Hi Dada” when I get home from work and I laugh when he wants to roughhouse in the living room.  His laugh is just the best.  The one thing I absolutely love about Grant is that while a lot of the time he wants to steal Nolan’s toys or be a brute, he will always want to share with his twin brother.  If we give grant a cookie, for example, he will immediately go take it to Nolan then come back for one for himself.  If only the world were so giving.

My Wife

Married

This is the real MVP of our family and the love of my life.  She works hard wrangling three kids during the day, doing school pick up and drop-off, taking Nolan to appointments and therapies, and then works nights 4 nights a week.  She is the one who gets Nolan through all his therapies and encourages to do better, she’s the one who fights for Nolan to eat by mouth, she’s the one who keeps our household running smoothly.  Without her drive, Nolan would not have accomplished have the things he’s done so far in his life.  Plus she puts up with a household of crazy males!  I can’t imagine living this life without my amazing teammate, and I love every moment with her.  Thanks for being awesome, babe!

Man, I love my family…my little traveling circus…my band of crazies…I just love them all.  I love that they make me laugh and smile and keep me sane.  I’m so thankful for every one of them and for the joy they bring me every day!

Thankfulness pt. 1: Levine Children’s Hospital

We’re coming up on Thanksgiving and I like to use this time to reflect on the things I’m thankful for.  I’m trying really hard not to re-write the last Thanksgiving post I did.  So what I’ve decided to do is break up the things I’m thankful for into a series of posts (as of this writing, I haven’t decided how many).

Today I want to express for an important place in our lives: Levine Children’s Hospital.

LCH

I often joke with people that LCH is our home away from home, at least it was during Nolan’s first year of life, between 2 surgeries and the occasional admission.  Lately I’ve been reflecting a lot on LCH and how much it’s meant to us.  If you ever go there, it’s actually a pretty cool place: it’s bright, cheery and colorful with chairs in the lobby that look like bacon and lots of fun art throughout the building.  The staff is friendly and there’s even a radio station in the lobby where lots of well-known recording artists come to visit.  It’s a cool place, even though no one really wants to be there as a patient/family member.

We had so many staff members there who treated us and Nolan was so much dignity and kindness.  I will never forget nurses going above and beyond to ensure Nolan was so well cared-for: not just medically, but as a human being.  They would give us meal tickets daily to make sure we could get something to eat, they would stamp our parking passes so we didn’t have to pay for parking, the doctors would include us in daily rounds.  They answered my phone calls and my questions, whenever they were asked.  They held conversations when appropriate, and turned down the lights and let me sit quietly with Nolan on those evenings when I was just plain exhausted.  It is a special place and I can’t speak more highly about Levine Children’s Hospital.

I’m lucky now that I can work next door to LCH, so I’m in an out of there whenever I can, and I help them with whichever program I can.  I do that because I’m proud to be affiliated in any capacity with Levine Children’s Hospital, but I do it moreso because of all they did for us and for Nolan.  It’s my way to give back.  In fact, this Halloween I had the opportunity to participate in a Halloween Carnival at LCH where the patients and their families can come trick or treat right there in the hospital.  I was so on that, because I know what it’s like to be in the hospital during holidays (Christmas and New Years, in our case) and I know how surreal it makes things.  And I really appreciate how hard the LCH staff works to bring some normalcy to kids’ lives.  But I needed a costume because, I mean come on, it’s a kids hospital…you HAVE to dress up.  Then it occurred to me: I am going to dress up as Dr. Peeler, Nolan’s heart surgeon!  I got a picture, made a mask, got some surgical scrubs, and even had some help from a Nurse Practitioner in borrowing Dr. Peeler’s actual lab coat:

Peeler Costume

Yeah it was funny and a lot of the LCH staff were really tripped out by the Peeler look-alike.  It was fun, and I participated in the event for the kids and their families.  The costume was a silly way for me to thank Dr. Peeler for everything he does for heart kids and our Nolan in particular.  We are so dependent on his skills.  Again, thank you Dr. Peeler!

We’ve been really blessed to have seen Nolan making some really wonderful strides during the 2nd half of this year: walking, eating more by mouth, being more vocal, even starting preschool one day a week.  These are some major steps he’s taken to becoming all Nolan can be. When I lay Nolan down to sleep at night, I always try to take a moment to just watch him and take a moment to admire how far he’s come.  I just want to use this post to say thank you to the staff of Levine Children’s Hospital…keep on being the best.  Because every night I get to lay Nolan down for bed means one more day I got to spend with my wonderful son.  And we get that time with Nolan because of your work.  I know sometimes you get really tired and stressed and it can be emotionally taxing…but from the bottom of my heart I appreciate your work to give my son his life and to give us an opportunity to see him thrive.  That means so much to me and if I could I would walk the whole building to personally thank everyone who has worked with us for their smiles, empathy, professionalism…heck, even for the chocolate milk in the nourishment rooms (SO good).  Every moment we make with our son is because of the hard work the LCH staff put into him.

So this Thanksgiving…each and every day…whenever I lay this sweet boy to bed, I want to thank you…

WP_20140929_015

More Than a Song

Anyone who really knows me knows that I’m a music nut: I love all types of music and have really enjoyed discovering new stuff over the last couple years.  In fact, when I transferred to my current job, my commute became much longer…which meant more music in the car!  Score!  So I’m going to take this entry in a little different direction today…

You ever have that song or band that just speaks to you?  I love music from the likes of Santana, Stevie Wonder, and even some Metallica from time to time, but over the last several years one band has really stood out to become one of my absolute favorites: a band from South Carolina called Needtobreathe.  Way back in the day (2007) when I got my first job out of high school, I used to put on the Yahoo Music player as background noise in my cubicle while I worked.  Often I would get a song called “Shine On” by some band I never heard of named Needtobreathe, and I liked it.  Then Christian radio started playing the song that really turned people on to the band: “Washed by the Water.”

I remember going to LifeWay Christian Bookstore one day because they were running some sale where if you pre-ordered a Third Day CD, you’d get a $5 gift card to spend.  Since I’m impatient I wanted to spend it immediately, but couldn’t find just the right thing to by.  Then I saw it by the register: Needtobreathe’s album “The Heat”…for $7 on sale…which meant I got it for $2!  So even if it was wack, it would be no big loss lol.  This album was different from what I was used to, but I loved several songs on it and over time it grew on me.

Needtobreathe’s music began to become very important to me when I lost my job in 2010.  We were down to one income, our first son was only 5 months old, and it seemed impossible to find a new job.  Some days I would wake up hopeful, and other days I’d be in an absolute rut.  What I would do daily, though, was plug my mp3 player into the tv and jam out to some music with Hudson, who loved to dance.  I had this subscription where I could download unlimited music, so I loaded up Needtobreathe’s follow-up album called “The Outsiders”:

theoutsiders

This album…man, this album was perfect for me.  The songs were incredible, catchy, inspiring, and honest.  The one I held to the most during this period in my life was one called “These Hard Times.”  The lyrics simply say:

Give me something brighter
Give me something I can see
Give me something vicious
Give me something I can be
Give me all the love and peace
To end these wars
Give me something sacred
Something worth fighting for

It’s clear enough to me
The ugliness I see
Is evidence of who I need

Give me an answer
Give me a way out
Give me the faith
To believe in these hard times

It was such a clear reminded of how I needed God when things were good, but especially when things were rough: when the rent was due, when I was frustrated, when it was day 9 in a row of not finding a single job to apply to.  I listened to this album – and this song – over and over and over.  Eventually I got the CD and played the mess out of it in my car.  To this day it remains my favorite Needtobreathe album and one of my all-time fav albums.

So fast-forward a couple years: I would play some Needtobreathe for the babies while my wife was pregnant…it always made Nolan kick.  Smart boy!  Now fast-forward a little more to Nolan post-Norwood surgery.  One night in my routine of visiting Nolan after work, I decided to bring in some Needtobreathe CDs to play in the room’s DVD player, which would hopefully remind him of being in the womb.  Mind you, he still had an open chest and was on a ventilator.  The nurse he had that night was a lady I hadn’t seen before…in fact I don’t remember her name, but I asked if it was ok if I played some music for Nolan.  She said yes and asked what the music was…when I told her, she said she loved Needtobreathe, and we talked about their music for awhile.  But mostly I’d let the music do the work.  This time, the song that meant so much was “Something Beautiful,” which is what I often played for him in the womb and the song I’d put on repeat in his hospital room:

The part that always stuck with me says:

And the water is rising quick
And for years I was scared of it
We can’t be sure when it will subside
So I won’t leave your side, no I can’t leave your side

I never wanted to leave that little boy’s side…never ever…and I know, I just know that in spite of his half heart and the surgeries and the g-tube, and the physical therapy, and the speech therapy…that he is going to be special.  That this is going to become something beautiful.  God, I love that song.  The next day as I was entering the hospital, I saw that same nurse leaving her shift.  I said hello and I think she could tell I had a ton on my mind.  She stopped me and said, “I have to tell you: children are God’s work of art…but a masterpiece always takes more time.  He’s going to do great.  And I played him more music today, thanks for bringing it in.”  And that was the last time I ever saw that nurse…

So this year for Father’s Day my wife surprised me with a wonderful gift…tickets to see Needtobreathe in concert!!!  Man I was STOKED!  On August 22nd we had a rare night out without the kids so we can see one of my favorite bands in the world:

NeedtobreatheLive

They were INCREDIBLE!  Easily one of the best shows I’ve ever seen.  The highlight for me, of course, was when they announced “This is an older song and I hope you’ll sing along,” and dove right into “Something Beautiful.”  Being there, listening to the band perform this wonderful song, hearing the other fans sing it, and it just brought me back to those times sitting in a hospital room holding Nolan’s little hand, eyes glued to a monitor, praying hard.  It changed my life…and as I watch Nolan grow and progress, he’s clearly something beautiful.

Do you have that song or that band that means so much to you during the tough times?  If so I’m curious to know your story: please share in the comments!

Y’all Better Recognize

You guys know I can’t say enough about how awesome Nolan’s care was at Levine Children’s Hospital.  They are a first-class hospital bursting at the seams with amazing staff.  Well I am really excited to share some great news with you:

LCH US NEWS

Yes, LCH was ranked as one of the best Children’s Hospitals by US News & World Report in 5 specialities, which includes Cardiology!  Yeeeeeaaaaah buddy! 

Last week we were invited to the announcement of the rankings at Levine Children’s Hospital, which is always an honor when they choose to think of us and include us in celebrations like this.  It was great to see heart families we know, and even to meet new heart families. 

I know that no one wants to have their child in a Children’s Hospital…it’s a really tough thing to go through…but Levine Children’s Hospital is the cream of the crop and we’re fortunate that they’re right in our back yard.  There was a point during my lengthy unemployment where we briefly entertained the idea of moving if we found good job prospects, but it never happened and we stayed put.  If we were to move away and THEN found out we’d have a child with HLHS, I’d dread to think that options would be available wherever we moved.  There are lots of great Children’s Hospitals throughout the US, and thank God for that, but I’m glad we have an excellent one right here.  They treat us like family and it’s a special feeling to know you’re not just a number.  And – my goodness – their lobby has chairs shaped like bacon.  LIKE…BACON.  Win!

I’m proud to say my child received awesome care at Levine Children’s Hospital, and I’m confident telling people that it’s an awesome place to be should your child need care.  So keep up the good work, LCH!  We’re proud of you!

Read more about LCH and their recognition here: http://www.carolinashealthcare.org/usnews-lch

NolanLCH

Being a Fan of the Best Team Ever

1927Yankees

For those of you who don’t know, I’m a HUGE fan of the New York Yankees.  I like to joke that “We only cheer for one team in our house.”  The photo above is of the 1927 New York Yankees, often noted as the greatest team ever in the history of baseball.  Why?  They had a lineup delightfully called “Murderer’s Row”…they were an offensive juggernaut, headlined by a #3 hitter you may have heard of named Babe Ruth.  Oh, and if you wanted to simply walk the Babe, the next hitter was Lou Gehrig.  Yeah, you were pretty much screwed if you were an opposing pitcher.  In my era, the 1998 Yankees were an absolute beast.  They were a lot different than the ’27 team, though.  They didn’t have a similar offensive force…they wore you down as a team full of patient hitters and great pitching.  They won 116 games and pretty much dismantled everyone during the season, playoffs included. 

So just before you start rolling your eyes thinking this is all about the Yankees, it’s not…I want to talk about another epic  team that is like none other: my son’s heart team.

SangerTeam

The Pediatric Heart Care team through Sanger Heart & Vascular and Levine Children’s Hospital is the BEST.  Period.  These folks work really hard to make sure that your child has the best care and that you feel informed and valued as a parent, and that’s pretty special.  When you come in for appointments, you’re always welcomed warmly.  When you have to see a cardiologist, any of them will be patient and informative.  When your child is hospitalized, they go out of their way to be helpful and look out for the best interests of your child.  Yes, I do wanna brag…Nolan’s team is the best around. 

Want proof?  Here’s your proof: take some time to read through the Congenital Heart Services and Outcomes book http://www.carolinashealthcare.org/documents/lch/LCH-Congenital-Heart-Center.pdf

Want numbers?  In 2011, they performed 302 surgeries with a mortality rate of 2.4%, better than the national average of 3.2%.  Better recognize.

They’re a great team and they work so well together, and it’s all for the benefit of the little ones who are under their care.  I trust them and wouldn’t want any other team. 

I could put a post daily on this blog thanking this team for all they’ve done for Nolan, and it would be enough, and it wouldn’t even come close to being enough to showing how awesome they are.  So I want to thank you, Heart Team, for being who you are, for valuing our voice as parents, and for sharing in our excitement when our kids do well.  Trust me, it means a lot to see you all involved in different events, because it shows that your care extends far beyond the hospital or doctor’s office.  Having a CHD baby is like being in a club that no one necessarily wants to be in, but I’m thankful to have you all on our side.  I’m proud to cheer you on as you cheer on my son.  I don’t know where we’d be without you.

And finally I’ll leave you with a quote from the great philosopher Babe Ruth: “The way a team plays as a whole determines its success.  You may have the greatest bunch of individual stars in the world, but if they don’t play together, the club won’t be worth a dime.”

Count Your Blessings

I remember once meeting someone who – when I asked how they were doing – loudly answered, “Oh I am blessed and HIGHLY favored!”  I thought that was interesting and it made me think.  While I’m not questioning this lady’s heart nor will I go into any kind of theological debate, I will say that some people recognize the blessings in their lives while some say these things with an expectation of some DOPE stuff that God owes them.  Honestly, if God wanted to give us all a huge bag of gold and a Bentley, the promise of Heaven wouldn’t hold much weight, would it?  Anyhow, I digress…back to blessings.  I think sometimes our society as a whole has the idea of “being blessed” altogether wrong.  And I’m included in that number a lot of the time.  We think blessings mean no bills, money in the bank, a 5-star meal, and a nice car.  And yes, those things are blessings.  But what I’ve learned lately is that if you woke up this morning, God’s blessed you.  Simple as that.  So go make the best of it.

Sometimes it’s really easy for us to get caught up in life that we forget to be thankful for those blessings that we have everyday.  A home, food, family, friends, oxygen, health, all fit into those category.  For me this is the best reminder of my blessings:

NolanHeartHat

Look at that kid.  How cute.  The mere FACT that he is here with us is a major blessing.  A major blessing.  This morning I held Nolan on my lap and was making him laugh and it reminded me of those two months where he had a breathing tube in him…he couldn’t cry, he couldn’t laugh…he couldn’t make a sound.  And there were moments where I was honestly scared that I would never see my son again.  But here he is.  BLESSING.

Yes, the bills sometimes seem astronomical and the bank account seems small, yes things break and annoy you at home, yes sometimes you feel so tired from your week that you beat yourself up over not spending enough time with your family…but that doesn’t mean the blessings are gone.  You just need to open your eyes.  Every time that kid smiles, every time that kid laughs, I’m reminded of just how much I am blessed.  I realize not all heart parents are so fortunate.  I can’t imagine how difficult that is.  Sometimes it’s easy to be frustrated that Nolan doesn’t eat by mouth or that he doesn’t walk or crawl yet.  But he’s here.  When you look at it that way, things aren’t so bad.  So I encourage you, take a step back and see your real blessings.  You’ll be blown away.  Sometimes those challenges in your life are put there to change your perspective on blessings.  You don’t have to go claiming them in order for them to just magically appear…they just might already be there and you just aren’t looking.

SUCCESS!

Pretty much since his first surgery, Nolan has always been on a medication of some type.  In a previous post I wrote that Nolan’s cardiologist instructed us to take him off aspirin, so the only meds he was on was for reflux and bowel motility.  Nolan’s reflux was bad…oh so bad.  I mean this kid was Niagara Falls, he’d spit up everyone and it would sometimes soak through his car seat.  Nasty.  I think we did laundry daily and 99% of it was spit rags and towels and blankets.  Heck, we couldn’t go anywhere without Nolan spitting up after being in the car for about 3 minutes.  This didn’t help at all with his weight gain either.  It seemed like he was growing very slowly.  In fact, it seemed like he was at 16 pounds forever. 

I have no idea what happened, though, but one day Nolan decided he was done with spitting up.  We kept giving him the meds, but one day I was like “Hey…when was the last time he spit up?”  Days turned into a week…so we tried to back off the reflux meds.  Still no spitting up.  What?!  A week turned into a month.  Still no spit ups.  You read that?  NO MORE SPIT UPS!

  hallelujer

I still have no idea what brought on this lack of reflux, but thank GOD!  Next up was keeping an eye on the next med.  Nolan was pooping just fine. In fact, his farts could kill a gorilla.  That kid is NASTY.  So we backed off the other med…and he was fine. 

Say WHAAAT?

Yes!  So recently my wife took Nolan to a G.I. appointment and mentioned it to the G.I. Doctor and he said it was fine with him, especially if Nolan’s bowel motility is fine. 

So in January 2014…NOLAN WAS OFFICIALLY OFF MEDS COMPLETELY!!!

ballin

DumpingMeds

Nolan Makes the Big Time

In a much earlier post, when Nolan was first moved up to Progressive Care after his Norwood Procedure, I mentioned a group called the Cuddle Crew.  These were volunteers who would come and hold babies when their parents were unavailable, or they would hold the baby to give the parents a bit of a break.  It was a wonderful program and those volunteers gave me such a peace of mind, because I knew someone would be there with him…and they would hold him for HOURS.  They loved that kid.

Well one day we were contacted by one of the Nurse Practitioners on Nolan’s heart team.  She said the media was interested in doing a story about the Cuddle Crew and they also wanted to highlight some families.  She told me that when she asked the volunteers who they wanted in the story, they overwhelmingly said Nolan.  WOW.  Look who’s Mr. Popular.  I remember the nurses telling me that the Cuddle Crew would fight over who would get to hold Nolan…and I thought she was joking.  Apparently, she wasn’t!  So we definitely agreed to the interview and brought both twins to Levine Children’s Hospital. 

There, I got to meet some of these cuddle crew volunteers – Earl and Pam – for the first time ever.  I couldn’t thank them enough…and I told them how much their volunteering meant to me.  After a few minutes I realized Earl & Pam looked reeeeeally familiar.  As we got to talking, I figured it out: I met Earl & Pam just the week before at a Chamber of Commerce event that I was participating in for work.  SMALL WORLD. 

Anyhow, the reporter asked me some questions about the program and what it meant to me and then interviewed Earl and Pam while they wrestled with our crazy twins, who were about as squirmy as could be.  I appreciated the opportunity to thank those volunteers.  The Cuddle Crew began just before Nolan was moved up to Progressive Care, and it was started by that Nurse Practitioner and a Cardiologist, because they realized  that heart babies need more care than the typical child on that floor.  We are so thankful for that!  And it would also prove to be a great opportunity to promote CHD awareness in the community. 

Check out the story and video here: http://charlotte.twcnews.com/content/news/701327/levine-children-s-hospital-s–cuddle-crew–helping-take-care-of-infants

Onward

So post-Glenn Procedure, Nolan had a little bit of a hiccup with fluid on his lungs that landed him in the hospital for one week.  But now Nolan was home and we had nothing left to do but move onward: keep up with physical therapy, speech therapy, doctor’s appointments, medications, etc.  It’s still a colossal amount of stuff – especially for my wife – but at least there weren’t any surgeries in the near future and that’s a great, great thing.  Eventually Nolan came off the diuretics he was sent home with, he was no longer taking aspirin either.  In fact, he was on ZERO heart-related meds at all at this point.  He was only on one med for bowel motility and one med for his reflux. 

Nolan moved to physical therapy twice a week, and if my work schedule permitted I went to a couple therapy sessions with him.  I felt so bad for him because he would scream and scream and cry and cry…it broke my heart.  Eventually, though, he started to make some progress and before you know it, he was able to hold himself up for as long as he wanted:

NolanSittingUp

On the day I took this photo, he sat up for 7 minutes straight.  It was a definite cause for excitement!  Our little happy boy was improving!

Unfortunately he was still way behind in the mouth-feeding department, but we still worked on it. 

During this time, we managed to meet and befriend several heart families either in person or online, and it has become a great resource.  I definitely encourage you, as a heart parent, to find other heart parents to connect with: ask them questions, meet their kids, just hang out.  It makes a world of difference.  There are tons of groups on facebook you can connect with, and if you want to find someone local, ask your local heart team to connect you with someone.  That’s what happens with us: we get emails asking if we’d be willing to reach out to families who are about to have an HLHS baby.  We don’t pretend to know EVERYTHING, but we can definitely share our experiences and lend a helpful ear.  Through this we’ve met some really cool people and really nice family.  If we work together and lean on one another, our heart warriors become one heck of an army!

During this time we also realized that having a heart baby is pretty costly.  We got some of those “this is not a bill” statements from the hospital for Nolan’s FIRST hospital stay (the 2-month ordeal) and it was around $750,000.  Yes, you read that right…three-quarters of a million stinkin’ dollars.  It blew my mind and actually made me laugh: I mean, really?  Luckily I am blessed with having insurance through my employer as well as getting medicaid for Nolan.  Still, things aren’t the easiest: my wife couldn’t go back to work since no daycare is gonna take Nolan…nor would I feel comfortable with him in the hands of a daycare while he’s under tube feeds and all that.  And even if she did work, either one of our salaries would go completely to paying daycare for 3 kids.  What a world we live in, right?  And, of course, life happens through all this: things break down, bills pour in…heck, at one point in the summer our oldest broke his collarbone while he was at Vacation Bible School!  SHEESH.   So we realized that we needed to try to do some fundraising to help us out.  Here are my shout-outs to some incredible places:

Kisses from Katie: an absolutely wonderful group from my home state of Connecticut.  They reached out to us via a family friend and were so supportive.  They started this group in honor of their daughter, who was born with HLHS and is now a heart angel.  They want to support families with critically ill children.  They have helped us with bills and even bought us a new dryer when ours was on the fritz.  They are AMAZING and I can never thank them enough. http://www.kissesfromkatie.org/website/publish/home/homeList.php

Give Forward: this is a great website that allows you to develop a fundraising web page.  They handle it all and when your fundraiser is closed, they cut you the check.  Easy as that.  They were great to work with and always available to answer questions quickly via email.  http://www.giveforward.com

Bonfire Funds: this is an awesome company that will design a shirt for you to use as a fundraiser.  They have high-quality shirts and give your supporters the option of buying not just a t-shirt, but a child-size t-shirt, a long-sleeve t-shirt, and a hoodie.  They have lots of options and they ask you lots of questions about your cause so they can design you a really cool shirt.  I was amazed that they actually used a design I made and just added a few finishing touches.  In the end, the shirt looked awesome and we sold about 60 of them online! http://www.bonfirefunds.com

Team-Nolan_FIN