The greatest 1 week birthday gift...

...is a long awaited home coming!!!!!

Welcome home, baby Jack! And happy 1 week birthday buddy! Jeremy and I are so happy to have our whole family under 1 roof. We know it's going to be a long road ahead, but this is a big milestone for us. We thought we wouldn't have him home for another 2 or 3 weeks! His strength is amazing. It's amazed the doctors, nurses and our whole family. We know he will continue to amaze us.. every day!

He has a cardiologist appointment in 2 weeks at Children's and I am working on making an appointment with his pediatrician here in Peabody for either tomorrow or Friday. Other than that, we will be hanging here at home... together. <3

In the car, heading home! (thanks Auntie Angie for the moose car seat cover!)

A very happy Daddy

A very happy Daddy and Mama!

Shall getting really acquainted with her brother.

Shall doing what she does best.. invading personal space!!!

Snuggle bug

He's pretty excited for the super bowl (Thank you, MaryBeth for the football hat and booties!)

Sibling love

Hi baby Jack!

Sneaking a peek.

Taking a really close look.

"I wanna hold it?"

All the babies <3

A very happy Grandrea!

Already hugging and loving his Grandrea <3 I love this one.

Greetings, from Aruba!

...just kidding. Jack and I are snowed in at Children's. We did however get to take a stroll and venture out off of the 8th floor. We went down to the lobby and got a coffee, checked out the fish tank, Seacrest Studios and the gift shop windows (it was closed).  After making lots of friends and getting lots of comments about how handsome he is, we came back up to nurse and settle back in.

We facetimed with Daddy and he was WIDE awake. I think he loved it, because he was just staring at Jeremy the whole time-- it was easily my favorite part of the day!

Today we spent the day eating and pumping and getting weighed. He needs to show he can gain weight before we leave. Which is a little confusing.. because the way they determine if the lasiks is working and getting rid of fluid is by him losing weight. They just want him to be above his birth weight, and he is at the moment. So hopefully he continues to be a champion eater. His nurse told me that the fact he is can suck and swallow and go between the breast and bottle so easily is amazing-- there are cardiac kids that go months not being able to do what he does. So tonite, his fantastic night nurse Lauren (he just adores her and she him) is going to give him bottles to make sure he is taking in enough so we can keep up his super star feeding status.

Please keep your fingers, toes and eyes crossed that tomorrow's the day we get to go home!!! We are SO ready. And we need to get ready for our big super bowl party!!!!! :) :) He is ready to get dressed up in his patriots gear and watch Tom & company bring us home that Lombardi trophy!!!!!

xo Marissa

and now.... some pics for your viewing pleasure

Big Rich

Despite my Dad not physically being here to support us and to meet Jack, he certainly knows how to make his presence felt.

After my mom and Jeremy left with Evie and after a visit from cardiology and hearing the word Thursday casually snuck into our conversation, i was feeling particularly alone... and quite frankly a little depressed. Here I am, just gave birth not even a week ago, fighting the baby blues, alone in a hospital for what feels like forever with a very sick newborn.. and another night is possibly being attached to our sentence here? After a couple nights it starts to feel like a prison. I was really upset. Tears just streaming down my face, I begin to text Jeremy.. and i asked him to just text once in a while and send picture so I feel less alone. As I hit send, Elvis' Cant Help Falling in Love comes on Pandoras Lullaby station. I could almost hear my dad singing along.. off key. It made me laugh.. and i knew he was with me in the moment i really needed someone i love to comfort me.

I had an episode of the Long Island Medium on in the background yesterday while here with Jack.. and she did a reading for a woman who lost her husband and her daughter had just had a son. Theresa said the grandfather held the baby before he was born. I know many people don't believe in mediums and the afterlife and thats ok... but that small thought, that image of my father holding his grandsons soul in heaven before he arrived here on earth just fills me with faith and comfort. I'm thankful to have the faith in my heart that I do. It gives me peace in the most unsettling times.

Papa holding Evie on her first Christmas Eve

Proudest Papa and Evie at Salem Willows

One of my all time favorites

And the verdict is...

...Jack goes home Wednesday (possibly Thursday depending on the safety on the roads).

If it wasn't for the snow storm, they would've had no problem sending him home today. Since he is here, safe and has no threat of losing power or heat, the cardiology team decided that discharging him Wednesday would be the safest option. Jeremy said it's really a blessing, because we were anticipation a much lengthier stay.. so Wednesday (god willing, wednesday) is really earlier than we thought to begin with.

So Jeremy, Evie and I drove in to drop me back to Jack and pick up Grandma.. which Evie was VERY happy about. Jack had a fantastic night and morning with his Grandrea! <3 She was up every 2 hours snuggling and feeding him.. he passed his carseat test and had his chest Xray. And she was there for him for everything. What an unimaginable comfort it was for me knowing he had a loving heart and eyes watching him and warm arms to snuggle him after his testing. I don't know how many times I can say it-- I really don't know what we would do without her. Mom, you are amazing. Your selflessness truly knows no bounds and I am so happy my babies will get to experience the same love we do everyday.

So I'm all unpacked and Jack and I are bunkering down and settling in for snowmaggedon 2015.

Cardiologists said they are going to start him on a medication tonite. They think some of his weight gain is due to fluid starting to collect in his lungs. The medication will make him pee it out and it's something we will continue to give him twice a day at home.

That's it for now. Thinking I may have to venture out for real food tonite, god knows what I will be able to get tomorrow. I think this room just got a little bit smaller.... :( Thanks a lot, Juno.

This is how Jack feels about still being here...

...and here's Evie admiring herself in Jack's window. :)

xo Marissa

A little update.. visitors.. one very happy Grandma. And pictures. :)

Hi All--

I am writing this blog FROM HOME! Right from our couch. Jack is still at Children's. Our beloved Grandrea is on Jack duty tonight and is staying with him so I could come home and spend time with Evie. It's so nice to be home and out of the hospital setting.. but I miss my baby boy. I know he is in very loving, wonderful and capable hands with my mom-- which is the ONLY reason I would ever agree to this. My mom even had homemade chicken soup waiting here for me to enjoy! This woman's love knows no bounds... and Jack is a lucky little guy to have her all night long! I hope he's ready for lots of snuggles and kisses!! Thank you Mom.. for everything you do for us. You are just incredible.

So the doctors continue to marvel at Jack's strength and resilience. His oxygen level and heart rate have been in the ranges they need to be in. He is nursing like a champ, gaining weight and pooping like his daddy. If his rates stay the same and he continues to show them he can eat and that he can poop all that milk out, he will get sprung from Children's THIS WEEK :) :) Thanks to the snow storm approaching, it may snow us in at the hospital until Wednesday, unless by some miracle they discharge him tomorrow-- one of the cardiologist fellows, and quite frankly our favorite out of the 9383943 team members, told us she wasn't sure she was comfortable releasing him before a big snow storm. God forbid he decided to pull a fast one on us and start acting up, we'd be stuck in Peabody. The risk may not be worth it if he is already safe and sound at the hospital now. What's another extra couple nights. Which I understand. As much as I just want to take him home, I can appreciate her concern and would be fine hanging at 8 East until Wednesday.

Today was a big visitor day! Auntie Carole, Uncle Jimi and GG were the first to arrive! Then Jeremy, Grandrea and big sister Evie arrived. Last but not least, Uncle Derek came by.  It was so nice to see everyone and to show off the handsome devil that is Jack Mousseau! :)

While rocking Evie to sleep tonite, she requested multiple times to have pictures of baby Jack for her crib.. which just melted my heart. She loves her brother... and is going to be a pretty amazing big sister.

Tonite, Jack will have his carseat test. He will just spend an hour or 2 in his car seat to make sure he can stand it. Tomorrow, he has a spleen test, hearing test and belly ruben test.. and I believe another chest X-ray (that makes 3 total.. he isn't even a week old.)

It's really difficult to have to watch your baby go through all this. So many tests, needles, people poking and prodding him... I've watched him get pricked by needles in his feet to test his blood and listen to his little baby scream. I've watched a nurse and X-ray technician forcefully have to hold his arms and legs down as he screams and tried to lift his legs back up to his belly and pull his arms back down to where he was comfortable. The nurse and tech looked at me and commented on his strength and how incredible it was for someone his size..

..and his strength is amazing in so many ways. For a little guy who has already been through the ringer in the short time he has had here on earth... and he always comes back to me at peace. He sleeps soundly and happily no matter what they do to him. He is pretty amazing. People always comment on my strength, but really... his strength is what's really awe inspiring.

and now... some pictures! :)

Look at that blonde hair

 My family

What are you thinking about?

Adoring her baby brother!

Thanks for reading!! Will update again tomorrow. 

xo Marissa

Just call me moo-rissa

Today was all about pumping, nursing and pooping. 

He needs to show everyone he can eat and get plump without any breathing issues... So far so good. He gets a little better at nursing with every feed.. So I am feeling pretty confident he can show them he is a lean mean eating machine. 

They also think he looks yellow. I however feel like he looks like he has evies coloring when she was born. So the poor little guy had to get an IV put back in.. Which he was not happy about. His numbers came back normal so no lights for him! His nurse said that's just one more thing to check off the list and we are one step closer to bringing this little love home. 

After his IV, he gave us 2 good looking poops! 

So all in all. A successful day.. With lots of snuggle time!! 

Xo Marissa

A circumcision does nothing for the appetite..

It's been a long, emotion day here... Here are the highlights:

- I was discharged from BWH around 10 am

- jack had his circumcision done. He didn't make a peep and slept through the entire procedure.

- our plan was to snuggle and work on nursing today however the circumcision made him tired and not hungry. They inserted an NG tube down his nose to feed him.. So no nursing all day.. Just pumping which broke my heart into a million pieces

-Jeremy went home to be with my mom and Evie which is both wonderful and not so much so because my teammate is home and I'm here alone... Not alone because I have jack, but alone because he has been my rock.. And I don't feel as strong when he isn't around.

- jack was moved out of the NICU and onto the cardiology floor on 8 east... Which is again wonderful and not so much because it's a step closer to coming home but now I have to leave all the nurses I know and love to meet a whole bunch of new nurses that don't know jack.

-cardiologist came by and were not happy that the tube was put in and gave me the green light to nurse him. It took a few tears and about an hour but he latched like a pro and has had 2 feedings so far.

I'm going to get some sleep before he wakes up hungry.. For the boob and some snuggles ❤️

Keep the prayers and good vibes coming. Your continued support is much needed and appreciated!

Xo Marissa

When it rains, it pours...

....and it's especially good when it's all good news!

Jack had SUCH an amazing day!! As far as testing goes, he had upper GI scan to make sure everything is hooked up the right way and is where it needs to be. He drank a chalky liquid which they trace to throughout his system to make sure it travels without getting stuck or caught anywhere. He also had an ultrasound of his abdomen.

Both tests went very well.. how well? Well we originally thought that he had no spleen.. turns out.. he has a NORMAL size spleen!! The fact that it's a normal size is an amazing sign, however his cardiologist is ordering some tests to see if it's functioning properly. So fingers crossed his spleen is up and running!

Another win for our little man today-- he got to nurse! :) THREE TIMES. My milk hasn't come in yet, so he nurses for 15 minutes then takes some formula. He was literally born yesterday, though it feels like much longer... so we are just being patient until my boobs decide to join the party :)

I am being discharged tomorrow morning. Jeremy will be going home to Evie and Grandma and I will be staying at Children's with Jack so we can bond and work on nursing. The sooner he starts eating, the sooner we will get to bring that sweet boy home.

Thank you to everyone who visited today! Auntie Nikki, Auntie Lynne, Uncle Ben, Gabby, Grandma and of course-- BIG SISTER EVIE! She was so excited to meet her new baby brother. She wanted to hug and kiss and hold him. So we let her do all 3.

Before she left, she sang him her favorite song.. and trust me.. it was THE sweetest thing <3

Keep those prayers and good thoughts coming!!!!! 

xo Marissa

Happy Birthday, Jack!

Jack Richard Mousseau

January 21st, 2015, 3:51 AM

6 lbs 13 ounces, 19 inches long

What do you get when you wake up at 4:30 AM, have a long day at the hospital, and a quick 10 minute active labor? A Jack Richard Mousseau!

I got to hold him for a minute before they cleaned, measured, weighed and tested him. He came out alert, strong and looking like a champ! I held him for an extra minute before they whisked him off to the NICU with Jeremy. He was only there for 10 minutes and went right up to a bed at the CICU.

My nurse was amazing-- she brought me over to children's before the shift change so I could see him and hold him for a few minutes. He is just amazing. And handsome!! I can't believe he's mine.

His glucose was low so they put him on an IV of sugar water. He is at his first EKG right now and he will go through some other testing to determine if he will have surgery now or in a few weeks.

He is such a trooper-- and a good little boy! Jeremy said he has been quiet and content and everyone keeps commenting on how strong he is. I should know-- he's been kicking the stuffing out of me for the last 9 months! :)

Hopefully we will talk to the cardiologist today and have a better idea of what the next few weeks will look like. 

Big thanks to my dream team-- Jeremy and my mom, Andrea! Don't know how I would've done it without you! It's always nice when the nurses fight over us. We are just THAT much fun!! More thanks go out to Angie and Derek for taking our baby girl Evie the past 2 nights-- you don't know how comforting it was for us knowing that Evie was with people that love her as much as we do. Final thanks go out to my sister Lynne, Brother Ricky & Auntie Carole for hanging out with Evie today and keeping her company until Grandma gets home tonite. Evie is going to be so happy to see you all-- and i hope you're ready to play play-doh.. for 2 hours straight. ;)

Finally, thank you to everyone for all of the wonderful messages, well wishes, prayers and words of encouragement over the past week (and especially yesterday). It was a very long day, but all the love made it a lot more bearable! :) 

That's it for now... hopefully we will have an update later on.

xo Marissa

Not much to report but...

Just a quick update from the morning..

We got to BWH at 6. They gave me a pill around 9:30 in hopes of getting my cervix with the program.. I've been having contractions, but nothing earth shattering. Jack is looking great.. and he is doing everything you want to see in a typical labor.

Around 11, as you may already know, there was a shooting in the Shapiro building of BWH. 

http://www.necn.com/news/new-england/Report-Shots-Fired-at-Brigham--Womens-Hospital-289168721.html

We are fine. We actually didn't even know it was going on until people started texting us. It's a sad, scary world when someone can walk into a place like a hospital and try to take the life of a man that spends his time saving others lives. As a cardiac surgeon, he is someone that could have potentially performed surgery on Jack one day. I will be thinking of this man and his family-- and praying for his speedy recovery.

That's all I've got for now... will post again if Jack decides to make this a little more exciting. 

xo Marissa

Getting to 8 South CICU-- the much simpler way!

I got a very kind, informative and thoughtful message from my sister's friend Lewis about getting to the CICU. He says:

"I wanted to let you know there is an easier way to get to 8 South CICU.
If you enter the BCH main entrance (300 Longwood), go RIGHT after entering the main glass doors - follow maroon-color signs with the 'crescent moon' symbol to get to the 'Main/Berthiaume Family Building.' It's only 50-100 yards from main entrance to get to a set of elevators. Take those up to the 8th floor - turn LEFT out elevator and you will see signs for CICU entrance directly in front of you. This is the easiest way to get there and does not involve changing elevators (note the entrance level is called 'B/Basement' for returning to front entrance after a visit - not floor '1')"

He also sent me this link to a map of BCH that may be helpful:
http://www.childrenshospital.org/~/media/bch/locations/bchcampusmap062013.ashx?la=en

Big thank you to you, Lewis, for your very kind message and all the info you included! We really appreciate you reaching out to us.

I want to thank EVERYONE for all of the amazing, loving, kind messages. I am reading them all and will slowly but surely chip away at responding to you all. Jeremy and I appreciate ALL of the love, prayers and support we have received from so many people already.. and Jack isn't even here yet!!!

I will post a quick update tomorrow once we are all checked in @ BWH.

Till then, keep those prayers, happy thoughts and good vibes coming!!

xo Marissa

The Game Plan: Gearing up for Tuesday

Tuesday is fast approaching! We can't wait to see this guys little face.

We have to be at BWH at 6 AM Tuesday. Once He is born, he will spend a little time in NICU at BWH until he is stable. Once he is stable, he will be moved over to the CICU (cardiac intensive care unit) at Children's. Jeremy will be with Jack when he is transferred both the NICU and CICU and my mom will be with me. Once I am given the green light, I will head over to the CICU to visit Jack. The wonderful thing about these 2 hospitals is that they are connected by a tunnel. I can hop in a wheelchair and roll on over to Children's without having to be discharged.. and Jack doesn't have to go out in the cold when he is transferred. A little detail, but a very comforting one to this mama.

Jack will be staying in the CICU at Children's for a minimum of 2 to 4 weeks after he's born. Anyone wanting to visit is welcome to do so. All visitors must be over 18 and have their flu and Tdap vaccines. They allow only 2 people in at bedside at a time. So Jeremy or I will take visitors in one at a time. There is a pretty nice waiting room with vending machines, TV's etc.

The address for Children's is 300 Longwood Ave, Boston. This is the address we use in our GPS. The Children's parking garage is right across the street from the hospital. You check in as a guest at the front desk. They validate parking, so before you leave, stop back at the front desk and they will stamp your parking ticket. Validated parking is 10 dollars.

To get to the CICU, take the blue elevators (Fish to Fegan) up to the 2nd floor. Walk straight off the elevators down a small, ramped hallway and take your first right onto a large ramped corridor. Walk straight and you will find a set of elevators on your left. The CICU is located on the 8th floor. I am hoping I can get better directions to update this post later, but for now, Jeremy and I are going by our memories from our visit/tour a few weeks ago. If you get lost, just give one of us a call and we will get you where you need to be.

Jack will be an infant with no spleen and serious medical issues. Keeping that in mind, if you aren't feeling well, it's in the baby's best interest if you wait until you are 100% to come and see him. If you want to come visit, just give us a call!

I will post again once we are all checked in Tuesday morning... keep those prayers and well wishes coming!

xo
Marissa

Helpful link:
Children's Boston Location:
http://www.childrenshospital.org/about-us/locations/boston

BCH's CICU:
http://www.childrenshospital.org/centers-and-services/programs/a-_-e/cardiac-intensive-care-unit-icu-program/overview

PDF map of BCH:
http://www.childrenshospital.org/~/media/bch/locations/bchcampusmap062013.ashx?la=en
(thank you Lewis for this and all the other helpful info!!)

18 weeks, 9 out of 10, 50%

Where do I even begin?

The 2nd week of May, Jeremy and I were thrilled to find out we were pregnant with baby number 2. A much welcomed joy in the midst of the pain of losing my dad.

At 18 weeks during our first ultrasound, we were once again thrilled with more news- it was a son! While celebrating the good news, I was left a voicemail saying they couldn't get a great picture of his heart and that we'd need to see a specialist in Brookline the next day for another ultrasound. 9 out of 10 times, they do your scan, find nothing and send you on your way. Unfortunately, we were the 1 in 10. This specialist gave us an initial diagnosis of Congenital Diaphragmatic Hernia (CDH). She assured us it was nothing we did or did not do-- it was just one of those things that happen. Further testing would need to be done to determine the severity, however, if it was a chromosomal issue, his odds of survival and quality of life were not good. I did an amnio test (yea, that big scary needle right through the belly) and were sent home.

Monday morning, we headed into town with my mom to Children's Hospital where we met with cardiologists, had an ultrasound, an ECG and an MRI done. In the dreaded tiny room (that we still dread after many many meetings in this room) with the small table, white board and box of tissues, we were given the definitive diagnosis (tossing out the initial diagnosis of CDH) of heterotaxy dextocardia, asplenia. What does that all mean? His heart is on the wrong side of his chest and twisted around, one of his ventricles is substantially smaller than the other and he has no spleen. The cardiologist told us his odds of survival would be 50% and we were told we had the option of terminating the pregnancy. 

Fast forward to now.. I'm 38 weeks pregnant and getting ready to meet our son. We will give our son the best possible life and all the love his little heart can handle.. whether it's for 6 minutes or 60 years. We would have never made it this far without the constant love and support of our friends and our families. The endless appointments, the day long excursions into town for scans and ECG's.. without everyone's help with Evie, we would've been lost. 

We know it's going to be a tough road ahead. Extended hospital stays, multiple open heart surgeries and God knows what in between.. we know we will have the continued support we need to get through it together. 

I am being induced at Brigham and Women's in Boston on 1/20.. unless he decides to make an early entrance! Until then, keep us in your thoughts and prayers!! We'll be counting on them.

xo Marissa