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 :)

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...

EI, EI.. Oh?

Both Jacks cardiologist and his pediatrician suggested that I call and have Jack assessed by EI. 

What is EI? Early intervention. My initial reaction was absolutely not. My son is perfect and there's nothing wrong with him.. Other than the obvious. I didn't want strangers coming into my house and judging my son.. Picking his every move or facial expression apart. No thanks. 

That's not really what it's like at all.. And I know it's only what's best for Jack. He still isn't rolling over. He gets to his side and gets stuck. I'm afraid it may be my fault. He's spent most of his 6 months not on this earth but in my arms. He would sigh and would jump and scoop him up. His doctors said they always suggest EI to any kid with CHD.. So I finally made the call today and they are coming August 18th. 

Hopefully they come and say he isn't eligible for services.. Only because he's already needed so much.. It would just be nice to hear he doesn't need any extra help. I just want him to thrive.. But if it takes services to help him thrive, we will do whatever it takes. 

Feeding himself 

Sitting up with a little help from the boppy

Close your eyes, mama.

Loves playing with his toes.

I See Her

From the very beginning of all that is Jack, Evie has always been a priority and constant concern for me. Where was she going to stay when I was delivering Jack? Who would watch her? Was she going to be ok? Would she be excited to be a sister? My biggest concern should have been how she would handle having a brother that got so much attention. Believe it or not, I never really gave it much thought. I knew she'd be jealous.. Because what child who has had their mom, dad and grandma to herself for so long wouldn't be jealous? 

It's much more complicated than that. She has been experiencing these big and complex emotions and is unable to express her jealousy/anger/sadness/frustration in a healthy way. She not only lacks the maturity but the language to even tell us why she feels the way she does.  

So she acts out. Countless tantrums. Glass shattering screaming fits. I would be lying if I said she didn't try to hit/kick/pinch/squish Jack from time to time. I know she loves him.. And he loves her right back. It's been almost 2 full months since Jack's surgery and she is still having a hard time with this. I know she just wants my undivided attention, but if I can't give that to her, then what can I give? 

I haven't mastered this situation. It's far from perfect and I don't know if I'm even approaching it the right way.. But I'm doing my best. She needs my love, my patience and my understanding. She needs my time.. And these are all things I can give her. When she is being aggressive towards Jack, I know it's because she wants the attention-- positive or negative. I remove her from the immediate vicinity and have her cool off in a time out.. The. I talk to her. She sits on my lap and snuggles on my lap and I ask her what she is feeling. I try to help her label the emotion she is feeling. I try to help her better understand it and suggest other ways to deal with it. She needs that closeness-- to know that I don't think she is bad. To know that I see her, and I care for her like no one else ever will. 

It's a struggle everyday. Some days I feel good when it's time to put her down to sleep.. Other days I replay the day in my head and shudder at the lack of patience I'd had for her. Me snapping at her, and her bringing her tiny hands up to cover her face as she cried. Some days, I just wish I could hit the do over button. 

This motherhood business is tough. But anything worth doing wouldn't be easy. 

It's been a while..

It's been a while since I've posted... A little too long! I can't believe it's been 6 weeks since Jack's big surgery!!! 

I have been meaning to post an update, but it's been so difficult to find the time. It's been busy, but it's been the most wonderful kind of busy. I feel like I've been repeating myself over and over.. When people ask me how it feels to have this part of Jack's journey behind us, my response is always the same. It literally feels like we got to start over again as a family. It feels like we got the biggest do over you could ask for. As of now, there are no restrictions for Jack. We can finally pick him up from underneath his arms!!! Can you imagine? For the past 6 weeks, we've had to scoop him in some very creative ways, as to not pull at he incision site. He can do tummy time and work on rolling over. He can eat solids! We aren't stuck being held up inside.. We can go to the park and enjoy the sunshine. I can take him into a mall without being terrified of him catching a cold. For the first time, we feel like a normal family. And normal has never felt so good.

Jack is currently on 2 doses a day of blood pressure medicine or as Evie calls it, his yucky medicine. He hates it and has learned to stiff lip me as soon as he sees the syringe. He is also on a low dose aspirin regimen once a day. 

We had our final appointment with Dr. Ronai a couple weeks ago (I think I hugged her for 10 minutes and cried).. She told us he looks absolutely amazing.. And to enjoy our summer! We don't have to go back to childrens until October! We also met with a geneticist, Dr. Roberts at this visit.. She fell in love with Jack and also said he looked great and was developing right on track. We see her again in January.. Just to check in and make sure he is still on track. 

Jack is just the sweetest, happiest most lovable baby boy-- the scar is the only giveaway that he is sick. Other than that, Jack looks and acts like any almost 6 month old baby. 

Is there a bigger word for "grateful"? If so, that's what I am. 

LOVES this thing

Almost as much as he loves EATING!

At his last childrens appointment 

Chicks dig scars

Chilling with Sofie in the Bumbo!

Love this face

Yea, you need a few more teeth before you can dive into calzone buddy.

..but I'll "shave" it for later.

First trip to NH!

Dipping his feet at Ossippee lake

Photo cred to auntie Kerri and uncle Eric on this one! 

My son and I <3

It's Been [Sur]real

The past few days have been so surreal. I cannot believe Jack came home from the hospital less than a week after his surgery. It's been like we've had this big, dark scary rain cloud hanging over our heads, threatening to open up and drown us-- and all of a sudden the sky is clear. For the last 4 months (not counting while I was pregnant) we worried about Jack's surgery. Now it's over. It was successful.. and we are home. I can breathe.

How has he been? Great! Teething.. which isn't so great. That's actually pretty terrible. But since surgery, he has been eating more in one sitting. He is also sleeping much better. He is no longer on the oxygen! He has been chatting away more and more... he is smiling and laughing. He is perfect.

Jack has to take a blood pressure medication 3 times a day. He is back on Lasix (but already weening off). He can take motrin and tylonol as needed for pain. He also takes half a baby aspirin once a day.. which he will continue to do until his next suregery when he is 3.

Jack had a follow up appointment in Boston Friday and it went great. Dr. Ronai looked at us at one point and said "This couldn't have gone any better." And no one could have said anything any better to us-- what a wonderful, gratifying feeling after all the tears and fear. We go back in 3 weeks to meet with genetics and with Dr. Ronai one last time.. her fellowship is up and she accepted a job in Portland, Oregon. :( :( :(

Thank God for my mother.. I know I say it all the time, but I don't think I can say it enough. She was there for us the day of surgery and everyday since. She moved into my house to help us with Evie.. she has cooked, cleaned, played, sang, rocked, food shopped, soothed, hugged, loved and every other which way you would think someone could be helpful in this situation. I swear she could move mountains. I love you, mom.

That's it for now..

xo Marissa

Jack and Dr Ronai right before discharge

Field trip to Grandmas 

The sweetest boy.. He loves that blanket

Looking cute

He was playing shy guy.. So sweet!