Until It Happens to You

When Jack went in for his first surgery in May, a lot of people suggested setting up a fundraising website to raise money to help pay for the medical bills. Both Jeremy and I were against the idea. I've seen people post on Facebook about Gofundme pages trying to raise money for sick kids with cancer, funeral costs and everything in between and EVERYTIME I saw one I would think that will never be me. I will never be in a situation like that. So we politely declined and did it all on our own. The bills poured in, late notices, threats to be sent to collections.. The whole nine yards. It took us months to square it all away, get on payment plans and make the monthly payments. We JUST finished paying off all of last years bills.. Just in time for this years to start piling up. The stress of having to worry about Jack's health is more than we can handle.. Paying for his care just about put us over the edge. 

We are not ones to take handouts. We are a hard working family and have everything we do because we've worked for it all. Jack was born with a congenital heart defect. We didn't buy things we couldn't afford, we don't throw money around, we don't go on big trips.. We live a humble little life. With mounting medical bills, we essentially have to put life on hold.. So we don't have to compromise the quality of Jack's care. 

After this past year, I've come to a realization. Accepting help on Jack's behalf doesn't make my family a charity case. And accepting help from people who love Jack and are willing and wanting to help doesn't make us weak as parents and caregivers. By swallowing our pride, we are simply allowing amazing, generous people support Jack (and us) in the most amazing way. Jack will get the care he needs and deserves.. And we can worry about the important stuff. 

So we have accepted help and are amazed and overwhelmed by all of the support we've recieved. I want to thank my sister, Lynne, for offering to set up a fundraising site for us and putting all the love and work into making it amazing! And thank you to everyone who has already donated to Little Jack's Big Heart Fund! To say I'm amazed would be an understatement... I am moved to tears by the unbelievable generosity and kind words for each and everyone of you. How do you thank people like you? I hope someday I can find a way to really show you how much my family and I appreciate what you've done. 

https://www.youcaring.com/jack-mousseau-515830

I also want to thank my brother in law, Ben for nominating Jack to be honored at the Dally Cup tomorrow!! We are so excited to be a part of it and are so grateful to you and the Belmont Police Department and the Belmont Fire Department!! Can't wait for that puck drop!! 

https://www.facebook.com/events/1698068877072713/

I don't know how to explain how it feels being in this position. It isn't easy to accept help.. It feels really awkward, we just want to take care of our baby like any other hard working, honest parent would. But I guess until it happens to you, you just don't know. 

Jack didn't ask for any of this.. He deserves a happy, healthy life.

The 7th Annual Dally Cup

Thanks to being nominated by my brother in law, Sargent Ben Mailhot of the Belmont Police Department, Jack is being honored at the 7th Annual Dally Cup in Belmont! Next Sunday, the Belmont police department and the Belmont fire department will face off in a hockey game to benefit Jack. Jeremy, Evie, myself and of course our man Jack will be there cheering everyone on. Information for this event are as followed:

Sunday February 28th 2016 at 1PM

Skip Viglirolo Skating Rink

301 Concord Ave

Belmont, MA 02478

The following is a link to the Facebook event page:

https://www.facebook.com/events/1698068877072713/

We are so honored and humbled to be honored at this fantastic event. Thank you to Ben and all of his colleagues for making this happen.. We can't wait for next Sunday!! 

Can we go to the Dally Cup now mom??? 

"Human kindness..

..is overflowing. And I think it's gonna rain today."

Jack received a card in the mail today. No return address. No name. Just a simple message and a very generous gift. 

I'm sure whoever did this won't come forward so I can properly and personally thank them.

Whoever you are, thank you. Your generosity and kindness are appreciated more than you can imagine. CHD has given us so much to fear and unfathomable hardship this past year. Then I open a card like the one you sent to Jack and I'm reminded that there is hope.. and that good in the world still exists through people like you. Again, I thank you. And so does superman. 

Hoop Jumping and Some Good News (finally)

The Synagis saga continues.

Jack was suppose to go get this months round of Synagis today. Jermey got a phone call from the pediatrician saying they had to cancel because they hadn't received the dose from our health insurances specialty pharmacy. Care to venture a guess as to why? The insurance company will not send it out until it's paid.. In full. Let that sink in.

Jeremy has spent the better part of his days lately on the phone trying to sort this whole thing out. 

Our health care advocate told him to contact a company called my access 360 and explain Jack's situation. They instantly sent him a prepaid account with money in it to put towards the shot (which is great but tricky because our health insurance company wants it in full. )

The head nurse at our pediatricians office was so helpful. She contacted insurance company and asked why they didn't call to notify them about not sending the dose for the month and they informed her there was "a copayment issue" to which she asked again why they didn't contact her so she could've helped us find assistance or better yet why didn't they refer us to any programs.. They had no answer for her and told her in so many words that's not their job and they aren't at liberty to discuss it with her. 

The nurse told Jeremy to get in touch with the manufacturer, Astraseneca and explain to them what our situation was. So he did and after contacting the pediatrician and signing some paperwork, they are sending a "limited supply" so that he can get his shot on time.

Jeremy also signed a paper allowing the nurse to speak on our behalf with another assistance program for even more help. 

So my heroes of the day are the amazing head nurse at our pediatricians office and Jeremy, aka superdad! He has been working so hard and calling any and every one he can to make sure our son gets what he needs. And he detests calling anyone and being on the phone.. So I am so proud of him.

Finally, the good news... After all this hoopla with the insurance company and trying to get Jack his shot, Jeremy found out that BCH and our insurance company managed to come to an agreement and Children's will remain IN our network! So we will be able to stay at Children's with the cardiology team we know and love! They have been taking care of Jack since before he was even born. The thought of having to move his care to a different hospital with a different team would've killed me. We are just overjoyed and are so relieved. 

So now we just have to continue to work on he synagis. I'll be sure to keep you posted about that circus.

Celebrating our little victory 

Shake Shake 

A Really Expensive Shot And A Letter

Jack, like many cardiac babies, has to get a shot called Synagis. It's suppose to prevent him from getting RSV and other upper respiratory illnesses that are floating around during cold and flu season. If Jack were to get RSV, he could end up being hospitalized as it could quite possibly kill him. 

Unfortunately for us and so many other heart families, insurance companies do not like to cover this potentially life saving shot.. Why you may ask? Because it's REALLY expensive. How expensive? We just received our bill for the first 2 rounds.. $4174.30 and we still have 1 or 2 more rounds to go. And I thought the most expensive shot I'd have to pay for was at a bar in Boston..

It's January and we are already more than half way to reaching our deductible.. Oh but wait. We received a letter in the mail from the good old insurance company informing us that Boston Children's Hospital will no longer be in our network. If we'd like to keep Jack there to continue to see the best cardiologists in the greatest children's hospital in the world, our deductible DOUBLES to a ridiculous amount of money that we can ill afford.

I've been walking around in a state of constant panic. I find myself with a never ending knot in my stomach connected to a lump in my throat.. Holding back tears from the overwhelming stress and uncertainty of what we are going to do and how we are going to keep our heads above water. It's difficult enough to have a sick child and having to worry about their health and well being... No parent should ever have to worry about being able to afford the care their child desperately needs. Jack deserves nothing but the best.. And we are determined to keep him at BCH, no matter what it takes. 

A Difference

One year ago, I remember sitting on my bed and writing my very first blog post. I wrote it, erased it, rewrote, edited it (poorly), cried, edited it some more. I hovered my thumb over the post button for a minute, unsure if I wanted to invite you all into his incredibly intense reality we were about to face.  

One year ago, I was pregnant. I was hopeful, but terrified. I was prepared for the worst. I was [sort of] prepared to roll with the punches. I was [sort of but not really] prepared to see a very sick infant enter the world. I was [sort of but in no way] prepared to welcome and say goodbye to my son in whatever time frame God had planned for us. 

One year ago, life was a little simpler. We were a family of 3.. A mother, father and 1 healthy little girl. Our worries were much simpler. Diaper rashes and runny noses.. Eating enough vegetables. We didn't worry about oxygen saturation levels or open heart surgeries. We never worried about insurance covering anything or astronomical hospital bills pouring in. We didn't have Jack.

One year ago, our family wasn't complete. 

Amazing-- what a difference a year can make. 

From our gender reveal party.. the day after we found out he was very sick. We decided he deserved to be celebrated regardless of what was going to happen. 

21 weeks pregnant

One of my favorite ultrasound pictures. Looks like he's blowing bubbles. October 1st 2014.

Ultrasound, December 10th, 2014. 

186 days...

...until Jacks next appointment at Children's! 

We loaded the kids in the car at 6:15 this morning to check into Children's at 7:30 this morning. Evie was such a champ. We talked about what we had to do all week.. 

Me: When do we have to wake up on Firday?

Evie: Very early!

Me: and where do we have to take Jack Jack?

Evie: to the hopspital (aka the hospital)

Me: and what do they have to check?

Evie: Jack Jacks heart. Because he has a big booboo. 

So off we went!

Evie buckled in, ready to go. 

Jack Jack buckled in, snuggled in.. Ready to rock.

We got all checked in and parked it in the waiting room. This is the first time we took Evie along with us for a cardiology appointment. When she comes to Jacks appointments at the pediatricians office, she experiences some serious anxiety and immediately wants to leave. She was a little on edge when we got to the waiting room, but I came prepared with books, crayons toys and fruit. She also enjoyed the cool encased train set in the middle of the waiting area.

Breakfast time!

Chop choo!

We got called in for his EKG first.. And he did a great job! He fussed a little, but you would too if they stuck a bunch of uncomfortable stickers all over your chest only to rip them off 2 seconds later!! 

Rocking the tiny Johnny.

Reading her new Paw Patrol book. 

After a brief return to the waiting room, we were called in for his echo. I was so afraid they were going to have to sedate him but he actually did incredibly well! Again, he got a little fussy after a while.. But for an 8 month old, I think he was very pleasant.. He loved the echo tech! But he loves all the pretty girls. Such a flirt..

Taking a little break during the echo 

Thank goodness for clip dress dolls!!

Trying to be serious..

It's just not his thing!! 

Puffies and Mickey Mouse clubhouse.. What could be better?

We met Dr. Ronai's replacement.. Dr. Sunil Ghelani. He is very nice and he loved Jack. He was very playful with him and very kind to us. He also commented on how Jack is probably the biggest (weight wise) cardiac kid he's seen. My big chubby boy!!! Dr. Tworetzky came in and said Jack looks great and that we don't have to go back for 6 months. It's amazing to think we went from going for appointments every week to 6 months! Amazing. Dr. T also talked to us about how after the Glenn is the honeymoon stage.. And as he begins to move more and walk and run we will start to see the blue lips and skin again, we will see his o2 says start to drop again.. And as those things happen, they will determine when the right time will be to do the next surgery, the Fontan. They don't typically do it before 2 and no later than 3. 

For now, we will enjoy the honeymoon phase. Every. Last. Second. 

The best big sister to her baby Jack Jack.