The Choice to Choose

In the world of CHD, there is little choice in what and how and when things happen.

Jack had a cardiology appointment today. It was business as usual.. check in at 8:30 and getting weighed and measured. Everything was going smooth.. until it was time for "the stickers". He usually tolerates his EKG pretty well but he was not having it today. He didn't want the stickers put on and he REALLY didn't want them taken off-- they were super sticky! A millions stickers and a few tears later we were done and back in the waiting room.

We finally get called back for the echo and as we were walking to the room I hear Jack's little voice squeak out, "Can we go home now?"  They are never easy but today was probably his toughest to date. He just melted to a puddle, thrashed around and begged to be done. He didn't want kitty videos, Sia, Bruno mars or the quiet song.. nothing seemed to soothe him.

After a long, tough morning and seeing his lowests o2 sats I've seen in a while, I braced myself for our chat with the cardiologist. Dr. Tworetzky walked in and was his calm, cool self. He checked in with us and asked if there were any concerns or changes. He listened to jacks heart and quizzed him on the animal on his tshirt. He jumped right in and talked about scheduling Jack's Fontan procedure. Here's the best part-- we get to decide if we want to schedule it for November/December or wait until the spring to avoid the winter weather. For half of my pregnancy and for Jack's entire life, I feel like we have constantly been told what we had to do and when we had to do it. And now we have the power to choose.. it sounds small because really it's just about scheduling, but it feels big to me. There's power in the ability to choose.

The Fontan is done around age 3 and Jack's 3rd birthday is January 21st. If I could, I would have it done tomorrow-- I want it done and over with so we can move forward to a new normal without this giant THING hanging over us. Jeremy wants to wait. So we have a lot of talking to do.. but I have to say it feels pretty amazing to be able to talk about this.

Now and Forever

[ A little bit of a back story... Last month we walked the 7th annual Keep the Beat Walk for It's My Heart New England. Our team, Team Unstoppable Jack raised over $4,000 and I can't tell you how proud and humbled I am by that figure. It was a beautiful day spent with family and friends that I will remember forever.. and I can't wait to do it all again next year. ]

So now that that's out of the way... 

When you have a child with a congenital heart disease, or I assume any type of serious medical condition, you're sort of thrown into this community of families with children like yours. Our CHD community feels pretty big, however there is one woman who sticks with me. I don't know her well. We've attended a few of the same heart family events. We've bumped into each other at the heart clinic at BCH a couple of time. She is also the first mother to reach out to me (thanks to IMHNE) and selflessly shared her sons story and offered me support. 

Her son passed away in April after a long and hard fought battle with CHD. 

Not even 3 months after his passing, she attended the Keep the Beat walk.. a walk they attended every year with him and an army of a walking team. I spoke to her briefly and told her how much I admired her strength.. how I couldn't believe she was there. She told me he loved the walk and how he looked forward to it every year.. how he just loved seeing everyone wearing his team shirt. She said it just felt wrong not to be there. 

I stood there in awe. Jack on my hip, I felt a wave of guilt come over me. And there she stood.. even if she didn't feel like a power house of confidence and strength, that's all I could see. I don't need to see the movie, I have met super woman in the flesh.

Her words struck something deep inside of me and will stick with me forever. A mother's love is amazing.. it transcends time, space and the physical world. Even in death, a mother will still consider her child.. and set aside her own pain, fears and discomfort for them. Everything we do is for them.. now and forever.

Team Unstoppable Jack!

So proud of his medal!

Jumping those Flaming Hoops

When you have a baby and you bring them to their pediatrician, they get a lot of vaccines. Sometimes several in one visit. You don't think twice about it, because they are standard and your insurance will cover them.

You yourself go to the doctors and ask for a flu shot. You don't have the flu.. but you could get it. You're taking care of yourself and taking the right precautions to keep yourself healthy. You don't think anything of it, your insurance is going to cover.

Your son has an incredibly rare congenital heart defect amongst other heart abnormalities. RSV could potentially kill him and at the very least land him at Children's for an extended stay. You do worry about it. Because you have an insanely high deductible with one of the worst health insurance companies and they want the money upfront before they will have their pharmacy send the pediatrician the shot. One dose is $5,800. One. Dose. Let's do a little math, shall we?

One dose a month during the cold and flu season. November, December, January, February, March.. that's five months. Five doses.

5,800 x 5 = 29,000

Your husband tirelessly worked on finding some way to make this happen without financially drowning. With the help of the pediatrician's office, he found a program through the manufacturer that would send us the shot for free if you can prove you cannot afford it. After submitting paperwork and pay stubs and God knows what else, we are approved. Yay!

At Jack's last appointment, the nurse submitted the paperwork and request for his next dose which was due to happen today. Each dose has to happen within a certain time frame.

Jack and I got to the pediatrician's office and as always, he is hamming it up with all the ladies at the front desk. We get called back and then it starts... he is so adverse to nurses, doctors and doctor offices in general, it's honestly torture for the little guy. They took his sats, temp, weight and blood pressure. The practitioner comes in and checks his lungs, eyes, ears, mouth and belly.. all while Jack is screaming through his tears that he wants to go home. She assures me he looks and sounds well enough for his next dose and that the nurse will be in shortly.

As soon as I pull his shirt back on, the nurse pops back in and says, "I'm so sorry, but we don't have his synagis in the office. They never sent it, it looks like a problem with the insurance."

My heart drops. The tears start to well. Not again. Not this again.

I apologize for crying. The nurse apologizes profusely. I assure her it's not her fault. She tells me she will talk to the nurse in charge of booking these shots and that it will be figured out.

Jeremy called and talked to the nurse who got in touch with the program we have been going through. They received all of our paperwork the day of his last dose. Jack's pediatrician forgot to date next to his name, so they did not accept the request. They never reached out to the pediatrician's office to let them know. If they had, I have full confidence in the nursing staff that it would have been resolved and Jack would've had his dosage ready and waiting today.

A date. On a form. I can literally feel the heat in my face.. the anger and frustration just coming to a complete boil. My son's health, maybe even his life, being compromised over a missing date on a form. And I get it, a form wasn't filled out completely, but to just not inform anyone so that the problem could be rectified is inexcusable.. deplorable really. Because my son's health and well being means so little? How?

After all of this, the nurse resubmitted the paperwork and is expecting his dose to be in within 1 to 2 days. They will call us as soon as it comes in and we will take him right in.

My son's health depends on this shot. His little body and broken heart could not handle RSV. He needs this shot. Why does it have to be so impossible to just get him what he needs? There have been a couple times I've felt defeated..today was one of those days. Somedays the hoops are just hoops and they are easy to jump. Sometimes they are on fire; the flames are just too high to land on the other side unscathed.

This face. Those eyes. That little heart.

"Mama, go home?"

Rocking his scar.

Listen Ben...

He's at it again!

So Mr. Ben... is that your real name? WHO ARE YOU!? Why are you so amazing?? Whoever you are.. wherever you are... again, we say THANK YOU! <3 Thank you for your generosity but most importantly your undying support for Jack! Your cards always brighten our days.. Jack loves them!

The Force is Strong... with Jack Jack

Every holiday, birthday or milestone we meet with Jack is always incredibly special... and his 2nd birthday was no different. Every day is a victory.. and every birthday we see him celebrate is like winning a battle over CHD. Even at the young age of 2, I see him push himself everyday to walk a little further.. run a little harder. He tries new things.. he sings and laughs. He dances. He is so full of life and joy... I cannot tell you what a privilege it is to be his mom. Happy 2nd birthday, Jack Jack!

My big 2 yearold!

Little Vader

2 very special guests!

How happy were these 2 babes?

Our Soccer Star

I can't tell you how amazing it feels to be writing this post. Our little man is in a soccer program! After watching his sister from the sidelines last session, he now gets to get in on the action. From when I was 18 weeks pregnant with him, I've been living my life worried about what he'd be able to do.. or not do. Sports was a big one. Is it an intense training program? No. Are they grooming 2 year old soccer protégés? No. It's a fun laid back hour every Saturday morning where he can run around and chase a ball. He loves every second of it.. and my heart is so unbelievable full watching him on that field. I soak every second up.. and try to take mental snap shots of my boy just being a typical boy. I tuck  these beautiful moments deep in my mind  and in my heart. My sweet, baby boy.. the soccer star.

Parachute time!

Way to stick with it bud!

(not quite a) GOOOOAL

Climbing the mountain

His favorite part!

my soccer babies!

Jack was so happy to be like big sis!