Sometimes it’s hard to explain what we’re going through to anyone who doesn’t have a heart baby.  Everyone has been so kind and their words of encouragement, prayer, and positive energy have filled our home with hope.

But, living it day to day is extremely difficult.

I have been thinking about our life and future a lot lately – too much – often forgetting about today.  Here’s some things that have been weighing on my heart…I hope those of you that read this just see this as an outpouring of my soul..and let’s leave it at that.

1. “Messy paint job.” – A heart mom made the comment,”I knew it would be difficult…but I don’t think ‘they’ did a very good job painting a picture of how hard it would really be.” This is harder than I ever imagined. You know how hard it is to worry about your child dying…even from the moment they take their first breath?  There isn’t a day that goes by that I don’t rush to Evan’s bedside to see if he’s breathing.  I listen to his *broken* heart everyday – and when the stethoscope touches his chest – tears start to fall.  It’s not the soothing sounds of *LUB DUB LUB DUB* but swooshes here and there.  I can feel his heart beating when I place my hand on his scarred chest…and ache knowing how hard his heart must be working just to be here with us.  And I cry even harder than in the near future, his beautiful chest will be opened once again for his open heart surgery.

2. “Green with Envy” – I am jealous and really don’t want to be.  I would never wish this journey on anyone…it’s too difficult.  I feel my stomach turn into knots when I read about a baby being born healthy and his/her mom gets to hold them right way.  I feel sick with jealousy when I see babies taking bottles.  I was at church this past weekend and there was a baby dedication.  I started to cry as I watched the families at the front of the congregation showing off their kids and everyone praying for them.  I peeked in on Evan – sitting in his stroller – covered with a blanket to shield him from sneezes and coughs – and thought…”Those kids are healthy…everyone needs to be praying for my son. My son that is so sick…”  Here’s the worst….I get jealous of Heart Babies with “less severe” heart defects.  Now that’s ridiculous and I know it.  Any baby that has to have open heart surgery is obviously very sick.  Of course, there are some defects that are much more severe – like my Evan’s – but even the “simple” ones (which there really aren’t…) affect each family the same….we all worry about our children surviving.

3.  “No easy fix” – Please don’t tell a heart mom, “Well…they’ll be able to fix it.”  You know how hard that is for us to hear? I know that sometimes that ‘s all people can say….it’s their way of offering encouragement.  But, when we hear those words…its makes if feel like someone can just put a bandaide over their sick hearts and call it a day.  When we know that our babies – our babies – have to have open heart surgery, deal with recovery,and then have a life filled with close monitoring by a cardiologist.  And the future for our heart babies – God willing they have a successful surgery – is either a) a heart that is functionally normal with no more intervention b) some part needs replacing…which means another surgery c) the heart that was once ok…no longer works…and a transplant is the only option

4.  “Not heart related but still hard to hear” – When people meet Evan, I feel like I have to give a long explanation.  Talk about his heart and about his cleft.  Explain his “nose noodle” aka feeding tube.  I can’t just show them my boy and call it a day.  I know I’m bias, but Evan is perfect to me.  He has the biggest, most contagious smile.  So, when someone meets him and says, “He’ll be SO cute AFTER his surgery to fix his cleft.”  it’s like they just slapped me in the face. Really?  Because, I think he’s pretty darn cute now.  My boy has taught me to see others through the eyes of Christ – no judgement.  I am able to see others – all of our differences – as beautiful, unique masterpieces.  So, please…learn to see my boy the same way…because he’s perfect NOW.

5. “Be there” – Please stand by us friends and family.  Be here for us – in prayer and in person.  Are our lives too hard for you to deal with – even for just a brief moment?  Suck it up.  Because in the darkest moments is when those who love you  shine the brightest.  I don’t know how I would have made it through Evan’s heart surgery without the friends – that I can count on on my hands – showed up.  Showed up with phone calls, text messages, hugs, prayers.  They cried with me.  They made me laugh.  They showed up and held me up when I had nothing left in me.  There are no words to explain my gratitude to them and no words to explain the pain I (and Craig) feel for those that weren’t there for us in the darkest moment of our life.

6.  “Let’s laugh” – As serious and stressful as our lives are – I appreciate more than anything – the gift of laughter.  I think laughing just reminds me that someday things will be ok.  Someday…no matter what happens…laughter will just be a part of my day and not something I long for.

7. “Talk to me” – Talk to ME.  Not just the me that’s a heart mom.  I think that this applies to moms with heart healthy kids, too. This heart journey and my role as a heart mom is a part of who I am not the definition of who I am.  So, let’s not exhaust our conversation with talks of Evan.  If it’s ok, let me lead the conversation.  If I need to talk about Evan, please let me.  Ask me about the things that we used to talk about pre-heart baby – like sports, movies, reality T.V., recipes.  Talk about you…I still want to hear about your day, your life, your problems, your struggles.  Just please don’t compare your child getting diagnosed with eczema with my child getting diagnosed with a heart defect.  I know it may still be hard for you…but it really isn’t the same.  But, I remember – pre-heart baby – how it feels to lead a normal, healthy kid life – and the struggles that came with that – tantrums, colds, etc – and I want you to feel comfortable talking about you with me…because I need to be the friend to you that you have been to me.

8. ” If I want to have a pity party – ask what you can bring – don’t ignore the invitation.” – Sometimes I need to cry.  Ok – a lot of times I need to cry.  Sometimes I want to feel sorry for Evan, for Iz, for Craig, for me  There will be times I think about the worst case scenarios.  So, let me have my pity party – I promise it won’t last long.

9.  “Sometimes I need a little more slack.”  – I’ve sucked as a friend lately.  I know.  I’ve missed funerals, birthday parties, showers, weddings..and I’ll miss those things as long as I have to for Evan.  A good friend of mine said to me at the beginning of this journey “You need to be selfish right now.”  And I have been. Completely wrapped up in my world.  I really do think I’m getting better, though.  I feel more confident in my ability to juggle real life and heart life.  But, just because I’ve sucked as friend and our lives may not intersect right now…please continue to be our friend.  Invite us to parties, to get togethers….and be ok if we decline.  Know that we want to be there…but for now…we have to say no.  If I don’t return a call, a text, an email, a FB message – don’t take offense.  Sometimes – I just don’t know what to reply.  Sometimes I’m just tired.  Sometimes I don’t want to be reminded of my struggles.  And yes…I want you to still be there for me even if I haven’t been the best friend to you. I know – it’s a double standard. But know, if you ever go through something like I’m going through – I’ll be the first person knocking at your door with a casserole, a box of Kleenex, and a hug. But also know, if you don’t ever go through something similar to what I’m going through…it doesn’t matter to me…I will still be there for you because I know how hard it is to look around and wonder where your “friends” are.

10. “I’ll never stop asking for prayers because the Heaven’s will never tire of hearing them.” – So, if you get irritated or annoyed with my requests to pray for Evan, I’m sorry.  Delete me as a friend on Facebook or in life.  Stop reading my blog.  Because, prayer and faith is what we’re clinging to to get through the day.  Prayer works.  I know it.

 

Whew…

 

 

 

 

Today at the grocery store, I ran into a friend I hadn’t seen in a while.  She’s been following Evan’s story and praying for us every step of the way.

We made small talk and then she asked the question, “How are things going?”

I’ll be honest…I loathe and fear this question.  It’s so broad…and I’m not quite sure how to answer it.  There are so many “things” going on.

Evan…

Iz…

Craig…

Me…

Me and Craig..

Etc..

Since she’s a good friend…I answered honestly…

“Everything’s going well…relatively speaking.  When Evan is doing well…things are good. Just taking it day to day.”

And you know what…I didn’t cry.

It’s not unusual for me to cry when talking about my life.  It’s a mixture of tears of joy, tears of fear, tears of frustration, tears of _______ (you fill in the blank…I’ve cried about it).

I’m making progress.

I’m making progress in a lot of places in my life.

1. Evan – As much as I think about the “what ifs” and the worst case scenarios for Evan, I really am enjoying him.  He is such a ridiculous joy.  He is so much happier than Iz ever was – Iz was a diva early on….  His spirit is contagious – his wide smile melts my heart every.single.day.  He makes Craig light up unlike I’ve ever seen him.  Every time Evan smiles at Iz…she exclaims, “Momma – look – he likes me!”  Even with the open heart surgery looming, the medications, the feeding pump, the spit ups, the doctor appointments, the therapy…I am incredibly thankful that God gave me Evan…broken heart and all.

2. Iz – she’s almost three.  When did that happen?  My little girl is an explosion of silliness.  She has an imagination unlike any other.  There isn’t a day that goes by that we aren’t searching for snakes, having a tea party, giving dolphins a bath…She is learning to push us to the land of  “Seriously, Kid?”  She is uber independent…but still loves her Mommy and Daddy.  She is a fantastic big sister.  Iz is everything I prayed for…compassionate, kind, tough..she’s my super star.

3.  Craig – he’s my rock. He’s the yin to my yang (does that sound dirty or what!!).  We have had our arguments – hey – it’s a stressful time.  But, he is so much more than I could have ever asked for in a husband.  I have learned to let him cope with things how he needs to and not interfere.  He makes me live in the moment, forces me to be thankful for today, reminds me that we don’t know what the future holds for anyone, and prays with me for another tomorrow.

4.  Me – I’m not a complete basket case 24/7…for now.  With Evan growing well and looking like the handsome boy he is, I find it a tad bit easier to take a breath.  I still worry over every little thing…don’t get me wrong.  I just really try and live in the moment.  There isn’t a day that goes by that I don’t greet Iz, Evan and Craig like I haven’t seen them in months.  I cover my family with kisses, hugs and prayers every day.  I find joy in the smallest things – Evan sitting in his Bumbo, Iz saying her prayers before every meal, Craig letting me watch my reality shows without making fun of me…  I greet everyday like it’s Christmas morning – with excitement, gratitude, and humility.  I’m learning to let go of the anger and sadness I feel towards people in my life that have faded away since Evan has come into our lives.  I’m learning to stop blaming myself for their absence -  especially during our hospital stays, Evan’s surgery, and the darkest moment…when we almost lost Evan during recovery – trying  not to point the finger at myself for them not showing up when they said they would.  I’m thanking God for those that have stood vigil by our side during those moments, rejoicing with us now as we find normalcy at home, and welcoming our new normal into their lives as if nothing has changed…when really…everything has.

Progress..

I promised you pictures of Evan….and I promise to keep that promise.  My trusty laptop decided to have a breakdown of it’s own..so now we’re in the recovery process of getting all my precious pictures, documents, recipes…all of it…back.

If you are reading my blog for my weight loss journey, I plan on writing about it under the “Food” heading.  So, if you don’t care about reading about my Evan (shame on you ) but just want to join me on that journey…you can find it there starting today.

 

 

 

On Saturday, I helped host a baby shower for my cousin.

It would be the first outing that didn’t involve a hospital trip.

It would also be the first outing where I would be around people that know Evan’s story.

Not people – like my closest friends – who I can cry to at the drop of a hat – but random people that are friends of friends and friends of family.

But, nonetheless, they know me.  They know about Evan.  And they’ve been praying for us – for him.

I was mentally preparing myself for the encounters.  I wasn’t sure how ready I was to discuss Evan.  Wasn’t quite ready then…and not sure when I’ll be.

I’m really good at the “I”m fine” bit.  I say it all the time, put on my happy face, and move forward.  I don’t really think people want to hear my sob story.

Evan’s story is hard enough for me to live on a daily basis.  The fear I have for him, the love I have for him, the hopes I have for him…all wrapped up in my day to day.  I do, sometimes, forget he has a heart condition that hasn’t been repaired.  Or maybe I’m in denial that he has to have open heart surgery and all the serious stuff that comes with it.

I’m quickly reminded how sick he is when I draw up his medications – all 8 of them – 4 times a day.  Or when I pick him up and he’s sweaty…you know…a symptom of “heart failure”…oh so common in heart babies.  Or when I check his oxygen and hold my breath waiting for the numbers to pop up – praying they are within his normal range.  Or when once again, he throws up a feed, and I place yet another call to his on call nurse. I’m reminded all day long how sick my boy is.

So, I was hosting this shower with my sisters and it was a special day for my cousin…who’s like my sister.  She’s been trying for a baby for over 5 years…and God answered her prayers with a baby boy…Evan’s soon to be buddy.

But, I braced myself to encounter family friends who haven’t had a chance to see me since Evan’s birth.  Not quite sure I was ready…but knew the shower was important.

Isabelle was with me – she never turns down a good party with cupcakes.  So, she was a good buffer.

But poor girl…she just wanted to play…not be dragged around all afternoon with me.

So, she left me.

Ungrateful…

And then it started…

The same question phrased in a few different ways…

“How ARE you?’

“Is everything, ok?”

“So….how’s it going?”

All with the same hand on my shoulder, their head cocked to the side, brow furrowed…

And then my response.

“I’m fine.  Evan’s great.  Excuse me…”  With my dazzling smile.

Then, I’d rush off to refill a plate of food or “check” on Iz.

I can’t tell you how many times I locked myself in the office to just breathe.  Compose myself.  Count to 10 to settle my emotions before the tears started to fall.

Holding back tears and putting on a brave face is something I’ve become a pro at.  So much of my false bravery is due to the fact that I don’t want the other person to feel my pain or have to even experience a fraction of what I go through on a day to day basis.  So, instead of unloading on the poor soul – with tears, unapologetic venting of my so called hard life, stress – I just give everyone the simple, “It’s fine!”

I escaped the shower with a bit of drama.  Craig called me in a panic – Evan had pulled out his feeding tube.

And he hadn’t put the it in by himself.

That’s what she said…

Sorry…It’s just too easy…

So, I rushed home.  Worried about my boys.

And then, I walked in.  The tube had found it’s way back in Evan’s gut and Craig checked placement and everything.

Everything WAS fine.

And it really is.

We’re home.  I’m home with my Iz – her imagination running on overdrive, her sass, her attitude, her tantrums…

I’m home with the hubs – my partner in life and this journey – laughing, bickering, kisses and all…oh baby

I’m home with my Evan – who’s growing, who’s smiling, who’s cooing, who’s such a joy despite of the challenges that lay ahead.

There are still days filled with tears and fear.  But, for now…I’m home and enjoying every second of it.

My Evan has shown me that none of us – healthy or not – are promised a tomorrow.

That’s why it’s so important to live for today.

And that’s what we’re doing.

So, today, if you ask me…it’s better than fine…it’s pretty dang great.

 

 

 

 

We are still a few months away from the big “O.”

Open heart surgery.

I can’t believe that with all we have been through during this second hospitalization – heavy oxygen support, a heart catheter, Evan’s first heart surgery, and an emergency heart catheter…along with the x-rays, the lines of I.V.s, the tests…the tears, the fear, the roller coaster ride…

…that we’re not even close to being “done” with surgeries.

It pains my heart as I look at my boy and realize he’ll never be “fixed.”  God willing, his heart will be repaired and will give him many years to live a full life.  God willing – Evan will only need one more BIG surgery versus multiple surgeries to help mend his heart.

It pains my heart even more that he has surgeries for his cleft lip and palate repair.  And those repairs will start after his heart is mended…and extend throughout his teen years.

I can’t believe my boy has to go through so much.

I can’t believe that no matter how much he’s already been through, he still finds it in him it smile.

He’s joyful.

He’s taught me about faith, about courage, about love.

Through this journey, Craig has been my constant support.  He’s only needed to lean on me once….and all the other days…I’ve leaned on him.

The doctors at Children’s Medical Center have been amazing.  Truly.  Intelligent.  Empathetic. Caring.

Dr. Nugent, Dr. Ramiciotti, Dr. Wolovitz, Dr. Lemler….just to name a few.

And Dr. Forbess…the cardiothoracic surgeon who placed his hands in Evan’s chest, saw his beating heart and gave my Evan more months with us.  He’ll be the one to search his mind for a plan, guide his hands as he cuts open Evan’s heart, and stitches together my son’s heart that isn’t quite right.  Many more months down the line…I will ask Dr. Forbess to perform a miracle on my son.

The amazing nurse practitioners in the CVICU -  Kim and the other Kim , Molly…and especially Kasey and Kristi – the women who held my hand, comforted me, cared for my boy like he was their own…brilliant minds, caring hearts, supportive hugs and encouraging words.

The expert nurses in the ICU…..how do I even begin to thank Katie, Courtney, Leigh, the other Katie ,  Jessica…just to name a few

And my extended family – the nurses on the 8th floor..How do I thank MaryAnne for watching my boy when he was struggling before his surgery and then give this tired a Mama a break when we came back up to the 8th?  How do I thank Karen, Dee Dee, Frances, Stephanie, Allison, Jerry, Felicia, Angela, Lauren, Brittany, Valerie, Amy…just to name a few.

My gratitude doesn’t seem like enough.

The team at Children’s has not just taken great care of my Evan – they took care of me.  They took care of my family.  They loved – love – my son.  I know they do.  They are helping Craig and I extend our legacy.

So, through it all, the tears, the fear, the ups, the darkest hours, the smiles full of joy – we survived it.  Evan survived.  He battled…and he’ll do it again.

But today, we go home.  We go home once again.  We live our life as a family of four.  We’ll take walks.  We’ll battle with tantrums.  We’ll sing songs.  We’re going to live our lives to the fullest.

Because Evan isn’t fighting this hard for me to give him anything less.

Until next time…

Keep fighting, son.