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. 

A Baptism and a Date

It was really important to us to have Jack baptized before his surgery. And thanks to my mom making a phone call, we were able to do that.. And it was more than we could've ever asked for.

Deacon Gaffney and his wife were kind enough to give us a private and personal baptism this past Sunday at Blessed Sacrament in Saugus. It was so beautiful. By far, the most touching moment was when Deacon Gaffney told us how he had traveled to Jeruselem 25 years ago and had taken home water from the Jordan River. He still had some left after all this time and had put some in the water the Jack was baptized in. How incredibly amazing and special is that? We are so thankful to the pastor of the church and to Deacon Gaffney for opening their doors and hearts to Jack. it really was an amazingly special day. 

Godmother Nicole and godfather Ricky and Deacon Gaffney.. and Jack of course.

Jack did so well.. Didn't make a peep.. Just enjoyed his little bath!

Thank you Grandrea for all your help in making this very special day happen.

Jack wore the very same outfit his papa (my father) wore when he was baptized. How incredibly cool and precious is that? Thank you GG! 

Ok here's the big update. Jeremy's phone rang around 9 and it was Children's. They wanted to schedule Jack's surgery. Have you ever felt a huge weight lifted and yet feel like you were being crushed at the same time? Is it possible to feel like you would breathe a giant sigh of relief if you could only catch your breath after a punch in the gut? All at once I am so relieved to finally have a date because with that date comes the fact that this will all be behind us soon and yet absolutely terrified.

Jack will have his surgery on May 21st. We will take him in early the day before and spend 6 to 8 hours for pre op stuff.. Then take him home for the night to hopefully get him some peaceful rest before the big day. 

Please keep our Jack in your thoughts and prayers!! He is a tough guy, he is going to do great.. But thoughts and prayers are always welcome :)

Xo Marissa