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 :)

Puréed Squash with a Side of Drugs

Since surgery, Jack has been on a blood pressure medicine called Captopril. Because he is so young and so small, we have to get the prescription as a compound. The pharmacists crush up pills, mix it with water and we'd use a syringe to give it to Jack. 

He started with a small enough dose that we could mix it with tylonol or a little formula. Once he got a little bigger, his dosage went up and mixing was no longer an option. Eventually, administering his Captopril felt more like water boarding my poor son. He would scream, cry and choke. I would have to wait until he was screaming just to shoot it to the back of his mouth... He would gasp, take a giant gulp and you could hear the air travel all the way down to his tummy. It got so bad, and my son is so smart, that he would see the syringe coming and literally STIFF LIP ME! I couldn't get him to open his mouth!!!

Finally, after numerous calls and pleas, he has been switched over to a different medicine called Analopril. It's essentially the same thing but the dosage is lower and we can crush the pills up ourselves and hide it in baby food. It's been a cake walk ever since!!

I must admit, I feel a little bit like Walter White from Breaking Bad when I'm crushing up his pill to a fine powder.. Or maybe more like Jesse Pinkman. Either way, it's an amusing thought to have while doing a not so amusing task. I never thought in a million years I would have to be giving a 6 month old blood pressure medicine! 

Today, it was squash for dinner. With a sprinkle of Analopril. 

And just for good measure here are a couple cute ones I can't resist sharing...