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. 

The Monster Lurks.

The monster lurks. It hides in the far back corner of my mind.. It waits. Sometimes it's quiet and docile.. showing no sign of imminent terror. 

Then I read posts on some of the heterotaxy groups I am a part of...

Then we have another cardiology appointment..

Then we have another echocardiogram.

It looms. Like the blade in a guillioutine.. And with bated breath, we wait for it to drop.

It's been a while since Jack's last cardiology appointment. We had the entire summer to feel normal. There were so many days I didn't even think about his CHD. He has an Ecco and an appointment with his cardiologist this Friday.. And just like that, the monster in that far back corner begins to rear it's ugly, terrifying head.. I can hear the throaty growls begin to echo in the darkness. I sleep a little less, my heart begins to weigh a little more. Anxiety begins to take hold. 

Hopefully Friday goes smoothly with good news, a healthy Jack and a very distant follow up appointment... And the monster can settle back down in that deep, dark corner... Until next time. 

The missing piece

One year ago today, Jeremy, my mom and I spent a long, exhausting day at Boston Children's Hospital. After numerous scans, tests and meeting multiple doctors and nurses we had a definitive diagnosis for our baby.

I can close my eyes and I can picture us in that small, dull conference room with the tissue box sitting in the middle of the table. They must go through a lot of tissue boxes. I can feel the wave of emotions all over again.. A numbness that grows from the back of my neck and just seeps down my spine. There were tears. There were hugs. The shock and severity of the situation was too much to handle. I remember telling my mom it was just too much.. I had already lost my dad and now I might lose my son? We sat in stunned, tearful silence as they drew a diagram of my baby's heart on a big, white dry erase board. With every screech of the smelly blue marker, they tore at the very fabric of what my family was suppose to be, and tore it to shreds.

I am so grateful that we live here. I'm beyond grateful that we met Dr. Ronai that day and that she was able to guide us through this first year of Jack's journey. That day was awful, but a blessing in disguise. It put us on the path we needed to be on to ensure Jack would get the absolute best cardiac care in the world. 

A year ago it felt like the final piece to my family puzzle would be forever missing. I thought I would never get to see the whole picture. Thanks to Dr. Ronai, Dr. Tworetzky and Jack's surgeon Dr. Quinonez, I have all the pieces. And as all you blog readers know, it's one beautiful picture.

EI is A-OK

Jack's assessment was 1 week ago. 3 girls from Northeast Arc came to the house and used the Battelle Developmental Inventory to evaluate Jack. They loved him from the second they walked in the door. He was his very happy go lucky self and was ready to dazzle them with his skills.

He was assessed on 5 different domains-- Adaptive, Personal-Social, Communication, Motor and Cognitive. An average score in any of the domains would fall between 85 and 115 and anything below a 77 automatically qualifies a child for services. Jack scored pretty high in Adaptive (ability to complete daily routines such as eating) and Motor. They were actually really impressed with his motor skills.. he is "raking" with his hands and fingers to obtain small objects. He is also already starting to work on transferring objects from one hand to other.

Jack scored 77 in communication and so he qualified to receive those services. They said it could take 3 to 4 weeks to hear back from them to set up a time for them to come back. They want him to start saying more consonant sounds.. however right after they left, he obviously started trying to say "dada"! They also want him to start calming down at the sound of a familiar voice.. rather than having to have to be picked up, held and rocked. Considering we couldn't let him cry for too long for the first few months of his life, this wasn't a surprising area he needed work on.

Dr. Ronai had told us to take whatever services they were willing to offer us.. why not? We want to give him every chance and every opportunity to grow, learn and be the best Jack he can be!

An Open Letter to [an Older] Jack

My Sweet Jack--

You, my boy, were mine from the second I knew you existed. Your Dad and I knew we wanted you and that you'd make our little family complete. The day we found out that you were a boy, it was one of the most exciting, happiest days of our lives. It was also a sad and scary day.. we found out your heart was in a sense broken and we weren't sure if there was a way to fix it.

The doctors told us we could give up. Give up on you and move on like you never existed. We just couldn't-- you had already laid roots deep in our hearts that couldn't be ripped out, no matter what anyone said.

So if you ever wonder why.. why your Dad and I decided to keep you and continue this journey..

Why you have to wear this scar on your chest..

Why you may not be as fast as the other kids..

Why you have to take these medications..

Why we worry about you..

My sweet, sweet boy. I'd heard the amazing sound of your heart beat. I'd felt your unbelievably strong kicks in my belly. I saw that flicker of a heart pumping-- though the image was grainy, the strength of that warrior heart was clear as day. So if you ever wonder why you are here, this is it..

We loved you so deeply that an entire life without you would be far worse than a life with you for any brief amount of time. We have done and will continue to do whatever it takes to keep you happy and healthy.

The answer is so simple. And it's the answer to many things in this life-- Love.

MRI @ 18 weeks pregnant 

Post Bilatteral Glenn Surgery 

The zipper
 

And now :)