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!

Change of address

WE ARE GOING HOME!!! 

On some meds which I will explain in a later post but we got discharged and are heading HOME! 

Post again in a bit.. For now, relishing the joy and happiness!!!

Xo Marissa 

Presence

I'm pretty big on signs and believing that just because someone has past away doesn't mean they still make their presence known and felt.

One night before Jack's surgery, my mom was putting Evie to bed. Evie is always going a mile a minute, even seconds before her head hits her pillow, so she was chatting my moms ear off as they rocked. Evie started talking about Papa (my father). This is nothing out of the ordinary, she talks about him all the time despite the fact that he has been gone for over a year now. My mom asked Evie if Papa was there with them and wanted to know if he had anything to say. Evie said "Papa said Evie's a good girl". My mom agreed and asked if Papa wanted to say anything to Grandma. Evie replied, "Papa loves Grandma". Talk about true love.. Even in death, my father finds a way to be there to comfort my mother at such a stressful time. I get goosebumps every time I think of this exchange and I am so happy she got to feel his presence at such a critical and sensitive time.

During our pre op appointments on Wednesday, we found ourselves hanging in a waiting room between meetings with surgeons and doctors and what not. Jeremy was fiddling with his phone and all of a sudden let out this gasp. I looked at his face-- his expression was a mix of shock and disbelief. I asked him what was wrong and he said that he had just been going through his text messages and his phone just started calling my dad's cell phone.

Chills? Yep. All over. He wanted us to know he was there with us at that very moment.. amidst the uncertainty and fear. He was there.

I know my dad would've been by our sides.. doing everything and anything he could've to support us. To guide us. To love us and to be there for his grandson. So many moments I find myself thinking "What would Daddy do?" or "Big Rich would've had something funny to say right about now." and most often "I wish my dad was here." I miss him. But I know he was here with us and that he has been since the beginning. So thanks Dad... for, like always, going above and beyond the call of fatherly duty.

xo Rissa

The Amazing Jack

Another great day for our man, Jack.

He had a chest X-ray this morning and it came back clear.. so out came the chest tube and his pacing wire! The only wires on him now are his monitors! He is eating, peeing and pooping like a champ. He has flirted with every nurse that has stepped into this room and is getting back to being his old self again! My heart could burst-- I'm amazed and so proud of my baby boy!

We had quite a few visitors today. My mom, Evie and I came back in around 12. Jeremy's Aunt Jeanne and her friend Earl drove all the way down from NH to come see Jack! Auntie Lynne, Uncle Ben and cousin Gabby came by before they headed out for vacation this week. Finally, Auntie Carole and cousin Amy came by for a nice visit! Thank you everyone, for taking the time to come and see us. It may not seem like a big deal to you, but to us it's everything.

We are so close to being home, we can almost taste it!! Those prayers, well wishes and good vibes are working overtime-- in a big way! Keep them up!!

xo Marissa

A boy and his Grandrea.. Love!

Selfies with mama

The dream team plus 2 midgets

Aww a baby Evie..

Ugh 4 months AND he is smiling in his sleep? Too much cuteness for 1 picture 

..he wasn't thrilled having my phone in his face at this particular moment

Jack's turn for selfies with mama!

Love at first snuggle

Hahahaha his face

Bye bye, CICU!!!!

At Friday night and most of Saturday were pretty rough for our little guy. He was in a lot of pain.. Lots of crying, no eating and lots of medicine to try and keep him comfortable. I'm not even going to go into detail because I don't think either of us want to remember any of it.

Today however has been the best day! His swelling has gone way down and his color looks amazing. Jack finally ate. Breastmilk, formula.. He was chugging anything we put in a bottle! That was the first sign that he was starting to feel like himself. I also finally got to hold my baby again.. For the first time since Thursday morning. It was magical. It felt like when you come home from vacation and you just lay on your own bed with your head on your own pillow. I felt like I was in heaven! 

Evie and grandma came for a visit today. Evie was so happy to see her brother.. She pointed out Jack's booboo and leaned over to give him a big kiss all on her own. Jack was watching his little TV (Mickey mouse clubhouse of course) when grandma walked in and as soon as he heard her voice, his little eyes searched for her familiar face! Once Jack was asleep, we went out to enjoy some lunch and sun.. And as soon as we got back, more good news-- Jack was heading to the floor!! So Jack is out of the CICU and on 8 East. He is actually in the same exact room we were in for our last stay at childrens. What are the odds?

Jeremy and Jack are having a boys night at the hospital and I got to come home for a night.. Which is SO nice! A normal shower, clean clothes and my own bed. Just a little recharging before finishing out Jack's hospital stay. So thank you Jeremy for hanging with the babe for me.. He must be happy to have some 1 on 1 time with daddy!

We are one step closer to bringing the little guy home! Keep those prayers coming!!! We are in the home stretch now! 

Xo Marissa

His not so good day :(

Finally some peace this morning. 

Finally! A smile!!! Xoxooxo

... I'm batman. (Thanks uncle Ricky!)

Best feeling ever? Probably! 

Happy campers right here.

Daddy's turn!

Evie, daddy and Abby cadabby on our way to lunch.

On the floor!

Bffls.

To Hold.

Today I felt true and utter helplessness.. not once but several times.

My sweet, precious boy. He's woken up numerous times today. Hurting and hungry. All I can do is stand by, stroke his head, hold his tiny hand and talk to him. The ache of not being able to scoop him up and hold him is all too heartbreaking. It's an ache that just seeps down to the very core of my motherly being.

To hold. An innate right that no mother should ever be stripped of. I sat by his window in the CICU and looked out into the sky and pictured Jack and I just floating away. He was in my arms, smiling and we just drifted off, and I didn't look down or back. I held him close.. and we just floated. No weight, nothing pulling us in any direction. It was the one brief moment of peace I had in this room today. It was quickly interrupted by the all too familiar sound of his alarms reminding us why we are here.

I stepped out to get my laptop and wash up and while I was gone he woke up. His nurse Kerri filled me in.. she said he woke up very, very upset. He was thrashing and coughing and she thought his chest tube was bothering him. She gave him a smidge of morphine in hopes it takes the edge off and that he will get a little sleep. He still hasn't eaten, so we are hoping to feed him tonite. I'm sleeping in his room tonite because I want to be able to feed him his first bottle.

It's been a long, emotional day for my sweet boy.. for now, we rest.

xo Marissa

Look at that! He is actually taking a binky!!!

Nap time for Jack Jack and Bunny. All tucked in.

Some special touches ❤️

Can't wait to get out of here.. No offense, CICU nurses!

Jeremy and Jack

He heard us and wanted to say hello! 

Another friend came to hang and keep Jack company.. Coincidentally, he is an old gift from Grandrea! He is very comforted by his little glow worm.

Extubation Is Not My Favorite

I am fortunate enough to have a sleep space here at Children's while Jack is in the CICU. It's in a different building, but I can get to Jack in less than 5 minutes if I ever had to.. and for the most part he is sedated and sleeping. I feel like I actually slept and got rest after all the stress from yesterday. So I woke up this morning, showered, renewed my sleep space key and went up to hang with Jack.

I met his nurse, Deb, and she said he slept all night and that they'd be taking his breathing tube out in the morning. While I was talking to Deb, the attending came in and said it was time to take the tube out. While they did their thing and started fussing with his meds and tubes, Jack's face began to contort. He furrowed his brow, opened his mouth to cry but no sound came out. He started to squirm and reach his arms out. It started out with the attending, a respiratory nurse and Deb.. and as the seconds passed, more alarms went off and more and more people began to flood the room. Next thing I know, the tube is out and he let out a raspy, gurgle cry. He started thrashing his arms and legs and 2 or 3 nurses were holding down limbs in an attempt to get him to calm down. His sats went down and stayed down.. all of a sudden, in a room full of people, I felt alone. I was standing at the end of his bed, but it felt like he was a football field away. Then out of the corner of my eye, I saw Dr. Ronai. She came over and rubbed my back and I felt the tears well up. She assured me he was OK and that it was normal for them to wake up angry. They gave him some more medicine to keep him comfortable and sleepy and he drifted back to sleep with some sugar water and a binky.

Jeremy's cousins Rene and Jeanne drove up here from Connecticut just to visit Jack and I! It was so nice to have visitors and they get bonus points for brining me a giant coffee and treats. Just having familiar faces around and a couple a good laughs was so nice after all the chaos that happened moments before. So thank you ladies!!! You made our day!

He will get to eat in a couple hours. His nurse is going to call me when he is ready. For now, they want his room quiet so he can rest, so I am here in the sleep space. It's kind of like being back in college.. except I never had a single. :) And my door room never had a breast pump sitting outside it's door.

That's all for now. No new pictures. We were both a little traumatized after the breathing tube business. If I get to feed and hold him later, I will def have plenty of pictures to post. so stay tuned!

xo
Marissa

This is just an older video of Jack chatting and laughing

He's always a happy guy in the morning.

Happiness is a Successful Surgery

Long day. Very tired.. But couldn't go to bed (read nap before they call me down to the  CICU) without posting a little update.

Jack rocked his double Glenn surgery today!!! He won't need any more surgeries until he gets the fontan at age 3. All of his doctors said he did wonderful during surgery and didn't give them any trouble. He is resting in the CICU on lots of pain killers. He is very puffy looking, especially in his face and head because of all the new blood flow to his head. He has lots of tubes and wires, but he looks good. His nurse said the puffiness goes away  12 to 24 hours after surgery. 

I'm going to post a couple pictures of Jack post op. I think these pictures are important for 2 reasons. 1 being I want everyone to really understand  just how strong baby Jack is. The things he has to put up with and push through are incredible... But he is so resilient and strong and amazing and I am such a proud mama, I feel like I have to share his strength with you all. And 2, I want Jack to be able to look back at these pictures and see how far he's come (some day!)... If he ever doubts his strength, I will have photographic evidence that he was strong from day 1. 

Anyways, if you do not want to see them (they may be upsetting or unsettling to some) stop reading now! Otherwise, the following are a couple pictures from the day...

I will try to sit and update much more indepth tomorrow.. But the most important update is that the surgery was successful and that Jack is being such a trooper!!

Xo Marissa 

Cheers to Jack (and atavan) at lunch! 

Guess which one is Andrea's?? ;) thank you to tab for meeting us for lunch and some much needed comic relief! And thank you to the bar tender for buying us this round and wishing Jack well!

Post op in the CICU. Our big brave boy! 💙💙💙

Grandrea brought Jack Jack a little friend to watch over him and keep him company 💙

The Saddest Goodbye

We arrived at Children's around 6 this morning. The minister that married Jermey and I, Larry Russi, met us in the lobby so he could bless and pray for Jack. His words were kind and soothing and put my heart at ease. Thank you, Larry.

While in the waiting room, we met a sweet little girl named Isabella. She had no problem jumping up on mine and my mothers laps and she was very generous with her hugs. Isabella has down syndrome and was there to have tubes put in her ears. We sang and played for a few minutes while we waited for Jack's name to be called. Funny how life gives you these sweet distractions at just the right times.

Once we were called, we said goodbye to Isabella and headed back to get Jack checked in and have his vitals done. After meeting with the OR nurse and the team of anesthesiologists, it was time to say goodbye. These people taking care of Jack are pretty amazing. They are so kind, loving and gentle and reassured us 37043048 times that they would take very good care of him. Though I barely know these people, I believe them. This didn't make it any easier to let him go and hand him off. I hugged him tight, kissed his cheeks and smelled his hair.. which at 4 months still has a hint of that fresh new baby smell. My arms passed him off to the doctor, but my head and my heart are holding him closer than ever.

There were tears. Tears for having to be apart from him all day.. for having to say goodbye and relinquish my sons well being into someone else's hands.. for the fear he might feel when I'm not there.. for the pain he will endure.. for giving him this broken heart and putting him in this position. I know that God is holding Jack in his hands and in his heart and I know my dad is in that operating room telling Jack he's been there, done that.

The fear and anxiety of waiting while your 4 month old is in surgery is indescribable . I'm picturing my baby on a table with his chest wide open.. surrounded by unfamiliar people. I'm picturing the pain and confusion his little heart will feel when he comes to. I'm thinking the unthinkable.

The nurses just came by to tell us that the anesthesia went well, that he is asleep and that the surgeon has made the incision. Our next update will be when he is on the lung and heart machine.

Keep thinking of Jack.. I will keep the blog updated as much as possible. 

Xo Marissa

Resting up in the car

Cutest boy in the cutest little Johnny 

What baby smiles with an empty belly before heart surgery!? THIS BABY!

The longest day that went by too quickly

It felt like the longest day ever that went by just as fast. We were at childrens around 630 this morning and left around 1. Jack had chest X-rays, an ekg, an echo and blood work. We met with an anesthesiologist, the surgeon, the RN and the cardiologist.. And Jack is officially ready to roll for tomorrow. He is the first case of the day which means we have to be there at 6am. 

I just want tomorrow to be a blur that none of us will remember.. Especially my sweet, sweet baby boy. 

Wish him luck and keep him in your prayers tonite, tomorrow and always. 

Xo Marissa 

Sleepy boy this morning before we left...

Waiting for his first round of chest X-rays..

Hanging out waiting to meet the surgeon 

Because he is pretty super!

He slept right through his echo today.. Good boy! 

Belief

I'm about to get real for a minute. 

I'm the mother of a child that is going to have heart surgery next week. I don't think there is even a word that comes close to describing the anxiety and terror in my heart. 

This is where I'm at right now. I'm making an appointment to have family portraits done this Friday so we have pictures to hold onto just incase the unthinkable happens. When I see other moms with their sons, a lump in my throat swells and I can't help but wonder if I will get to see my son at 5 years old.. 11, 18, 30? Will I be able to handle what he will look like after surgery? What if he suffers a complication.. A stroke? A clot? Will I be able to be the mother he needs me to be for him while he recovers? 

With each passing day the cracks begin to spread.. My cracks. I'm constantly told how I'm admired for my strength. As surgery day fast approaches, my strength is quickly turning into anxiety and fear.. And fear is a strong and scary emotion. It's gripping me in a way I have never felt before in all my 31 years on this planet. 

So how do you conquer fear? For me, I look at my son, take a deep breath. I believe in his strength and will to survive. He has proven to us time and time again that he is strong and ready to defy any odds that have been stacked against him. I believe that my father is here, comforting me and watching over Jack. I believe that God has a plan for my son and that this plan is far from over. I believe there's more for Jack to accomplish and contribute to this world that is desperate for some good. 

So the trick to conquering fear is belief. Just believe. 

The Official Verdict Is....

..surgery will be May 21st as planned. 

We saw Dr. Ronai and Dr. T at Childrens today. They said he looks great and his sats are great. I have been supplementing 1 bottle a day but Dr. Ronai asked to bump it up to 2 or 3 a day because his weight gain slowed down a bit. If you can believe that. Kid likes to eat and it shows! 

So our next appointment will be the 20th for pre op. I for one am terrified. I wish I could fix him myself. I wish he didn't have to go through this surgery. We just have to trust and find comfort in the fact he is in the right place, in the right hands.