Michael James Sheehan Irwin

2012-02-08T22:29:00.001-05:00

2012-02-07T22:52:00.001-05:00

Well, all is going well. Grandpa had minor surgery, but is doing well - thanks to doses of laughter and love from Michael, Molly, and Tommy. Tommy celebrated his 1st birthday; he is the most wonderful, cheerful one-year old around. Sending lots of love!

2011-12-20T13:16:00.001-05:00

Sending lots of love and wishing everyone a healthy and happy holiday season!

2011-12-04T14:14:00.001-05:00

2011-11-25T17:01:00.001-05:00

We'll have more updates but wanted to let everyone know that baby Tommy's procedure went well. He is back to playing with his sister and brother already.

2011-11-06T16:10:00.001-05:00

2011-11-02T09:31:00.001-04:00

Sunday update: Michael, Molly, and Tommy visited the firehouse to visit their favorite firefighters. Then Michael and his best buddy Dana went to the Met. What a great day!

2011-11-01T16:19:00.001-04:00

Here are the cuties on Halloween. Molly has refused to take off her costume!

2011-10-29T14:41:00.001-04:00

2011-10-27T16:20:00.001-04:00

2011-10-26T08:09:00.001-04:00

Michael's appointment went well and the team is happy with his progress. They noted that they just want to continue to monitor for blood clots. With Michael insisting on running everywhere, he's doing his part to to make sure there are none.

Thanks for all the love, thoughts, and prayers. We're so lucky to have such great people looking over such an amazing little boy.

2011-10-24T10:39:00.001-04:00

Well, the kids are doing great. Michael has a big appointment today. It's the six week following surgery check up. They will do a work up - taking blood, checking his lungs, and doing an EKG. They will be able to get a full sense of how Michael is doing and to see how the Fontan is affecting him.

The appointment and tests will take a few hours so we'll keep you posted.

Much love.

Here are some pictures from their trip to the zoo this weekend. The Irish Tiger saw the Tiger. And Michael insisting on pushing Molly in her carriage.

2011-10-16T19:27:00.001-04:00

2011-10-08T09:11:00.001-04:00

Molly and Michael playing in the hallway, Molly offering to lift the box, Molly playing with her wonderful friend Dana, and Michael doing a great job coloring with new friends while he waited more than an hour for an echo.
Lots of love!

2011-10-05T14:58:00.001-04:00

Molly reading stories to a very attentive Tommy. So adorable.

2011-10-02T18:15:00.001-04:00

Michael hanging out with friends and helping out in the lobby, Molly shopping and at lunch with Mom, and baby Tommy being adorable.
Michael, Molly, and Tommy put a show on at the Met. Michael yelled to all within earshot, "Ladies and gentleman, come see the show.". Meanwhile, Michael and Molly are able to - by just playing or goofing around - make Tommy burst into belly laughs that cause his whole body to shake. Adorable!

2011-09-27T14:27:00.001-04:00

Michael had his first day of school today! He'll be going two days a week and he loves his teacher, Chelsea. He brought his special rolling backpack and was ready to go! Check out the very cool classroom.

2011-09-22T15:45:00.002-04:00

Michael went for his echocardiogram and Dr. Kleinman said everything looks great! They are very pleased with Michael's progress and Michael, as always, did a great job and was very patient. He said he saw all of his friends and had everyone in stitches as he crossed his legs, imitating Dr. Kleinman.

Here he is talking to one of his friends in the office.

2011-09-22T10:43:00.001-04:00

Michael and Molly - best buds - and walking around town with Nana.

2011-09-20T19:14:00.001-04:00

Baby Tommy tried eating baby food tonight but the only person he would eat for was Michael!

Michael was great and spooned Tommy mouthfuls of pears while telling him to "open up and say aaaahhhh."

So very precious.

Here's hoping Tommy starts eating for others or Michael is going to be very busy.

And Molly feeding herself.

2011-09-20T10:11:00.001-04:00

Molly goes to Starbuck's, Michael and Molly root for the Giants, and Molly gives Michael a haircut.

2011-09-19T10:13:00.001-04:00

Michael, Molly, and Tommy just loved each other's company. They went to church (see Baby Tommy's cute outfit), watched football (Michael loves his new Giants shirt and helmet), and ran around (Molly in the lobby saying cheese and sporting her first ponytail).

Meg and Tom are just so glad to have everyone home. What a wonderful weekend!

Welcome Home, Michael!

2011-09-17T12:39:00.001-04:00

Michael arrived home last night to Molly yelling, "Michael! Michael!" and him responding, "I'm back, Moll! I'm back!" See the first-hug picture, with Molly's super-grip embrace.

Here are some more pictures from today's German Parade and everyone enjoying some fall day fresh air.

Lots of love and welcome home Michael!

Michael is going home!

2011-09-16T15:49:00.001-04:00

Way to go Michael! We're so happy for you.

Here he is taking his nap before getting his flu shot and heading home.

Getting his new superman heart checked out!

Michael is doing great!

2011-09-16T08:08:00.001-04:00

Michael has been doing so well, that they hope he will go home tomorrow. They took out the last of his tubes yesterday and feel confident that he is almost ready to head home (it helps that Michael is also VERY ready to go home, too). They will let us know today if he'll head home tomorrow.

Thank you to you all for the love, support, and prayers. Michael is doing great.

(PS - if you read this earlier, it said Michael was going home today. Sorry for the irresponsible, yet optimistic, journalism. It could be tomorrow, instead.)

Michael cooking...

Michael the artist (staving off boredom by painting everything)!

Michael making a break for it with Nana chasing after him. He made it as far as the sidewalk.

Michael decorating his car with tape (and a very clear sign that they were running out of activities to do in the hospital).

2011-09-14T11:40:00.001-04:00

Michael STILL enjoying his Choo Choo movie.

and loving the playroom. He's cooking up quite a meal.

2011-09-13T16:22:00.001-04:00

Michael got one of his chest tubes removed! They did an echocardiogram and were very happy with the results. The technician told Michael that he was the best patient, to which Michael responded, "Thanks. Thanks."

His right lung is still collapsed and he mistakenly went longer than he should have without pain medication, but otherwise, he is doing great.

What a trooper!

Here are some pictures from his art and crafts and playtime:

2011-09-13T09:47:00.000-04:00

Michael did so great last night. They took of his nasal oxygen tube and he hadoxygen levels in the high 80’s and low 90’s. During the night, they added a blow-by tube that just blows oxygen nearhis nose and mouth. They will continueto monitor his oxygen levels, which will hopefully increase as his chestcongestion decreases.

This was a big step. Way to go Michael!

Meg and Tom are doing a great job of keeping him occupiedand having fun, especially since he keeps asking about going home. Hang in there Michael.

2011-09-12T12:18:00.000-04:00

Everyone had a better night's sleep last night. Michael was moved to a slightly larger room. He continues to have the congestion but is doinga great job coughing. When I called, hewas just about to watch the train movie (again) and was enjoying his time withMom. He’s doing a better job eating(although his fat-free diet is less than appealing).

He just got back from arts & crafts where he and Mom created lots of cool heart items. Here's Michael resting with his favorite new blankets.

Here are some pictures from earlier:
Michael meeting one of the Backyardigans during a special visit. Michael insisted on giving him a "fist bump."

Michael resting while his Nannie looks over him.

Michael after visiting his Dad at work.

Michael at his favorite restaurant, Sunny's, where they let him take the orders.

Michael and Molly climbing a tree. Sure to happen again soon.

Sending lots of good thoughts your way,Michael.

2011-09-11T20:43:00.001-04:00

Well, poor little Michael had a rough night and morning. There was a clog in his chest tube causing nearly a gallon of fluid to back up into his lungs. Thankfully, his mom and dad were persistent with the hospital staff, insisting that something was wrong. They finally did a chest x-ray this morning and discovered the problem - which had it not been discovered would have led to either an emergency chest tube or the risk of another collapsed lung. Thanks goodness for his fiercest advocates.

Meg and Tom have been extraordinary in providing laughter, calm, and protection to Michael throughout this stay. They continue to amaze us all with their indefatigable spirit and ability to do all they can do for him. They are the yin and yang who make Michael the remarkable boy he is and who provide him with the balance he needs. They are undoubtedly his superheroes.

After the surgeon rushed in to drain Michael's chest, Michael looked at him and said, "Thank you, sir." Still so sweet. Michael was instructed to rest a couple hours and was then back to his old self. He received a visit from Father Don, and then from the hospital visiting dogs (see the video of Michael feeding one of them). He also sported his conductor hat while watching his new train movie he got from Auntie Sarah.

Well, here's hoping everyone gets a good night's sleep and there are no more complications. Thanks for the continued prayers and good wishes. There can never be too many.

2011-09-11T10:21:00.000-04:00

The very cool thing about Michael's new room is that there is a playroom on his floor. Yesterday he took Nannie and Auntie Sarah there so that they could do arts and crafts. Michael painted a turtle and wooden scissors holder.

Later in the night he walked Nana and Grandpa all the way to the playroom to show them. It was a long walk and Michael waved and said hi to his neighbors the whole way. Nana and Papa got him a sound machine. Here's a video of Michael playing the trumpet sound, bowing his head, and demanding some clapping. Bravo, indeed.

Michael's fever seems to be staying lower but there's still a great deal of congestion. Michael's doing a great job coughing and will hopefully have higher oxygen levels once the congestion breaks up.

Molly and baby Tommy went to the street fair yesterday. They walked around the closed off Third Avenue and had a great time. Molly loved picking out new dresses with Nana. When she saw the balloons, she said, "Michael's balloons." Hopefully, they will be back together soon.

2011-09-10T10:40:00.000-04:00

Michael was moved out of the ICU last night (at 1:00 AM). While he, Mom, and Dad are all a little sleepy, this is good news because it means that they are confident Michael doesn't need to be on the PICU any longer. His right lung is still collapsed but there are signs of improvement. Michael's fever has gone down and will hopefully stay down. If all continues to go well, they hope to remove the chest tube in two to three days.

Michael is doing amazing. He is back to his friendly self, impressing everyone.

When Nana and Papa arrived yesterday, they brought Michael a silly toy. He looked up at them and asked, "You bought this for Michael?" After confirmation, he smiled and said, "Thanks guys. Thanks guys."

Later, the cardiologist arrived to say that he is happy with Michael's progress but they are still watching him closely. When he went to leave, Michael called out to him, "Are you going to shake Michael's hand?" Dr. Stew came back, shook his hand, and then Michael asked, "Are you going to shake Daddy's hand?" Mayor Mick is back!

Later, he walked all the way to the end of the hallway with Daddy. He got to the window and looked out over the city.

That night, before bedtime, he decided he wanted to take another walk with Mommy, Daddy, Nannie, and Auntie Sarah. He was a superstar.

Meg went home for a quick hour last night to feed baby Tommy and see Molly. They were both so ecstatic to see their Mommy. Molly just starting jumping up and down yelling, "Mommy, Mommy, Mommy!" Baby Tommy just smiled ear to ear and gurgled. It was beautiful. UBS sent a special - and welcomed surprise last night - dinner for everyone! There was so much food, we were actually able to bring some in for the nurses, who really appreciated it.

Lots of love to all and keep up the great work Michael!

When Michael wants to go to sleep, he just squeezes his eyes shut. So cute.

Michael getting a "bath" and revealing his new scar.

2011-09-09T16:45:00.002-04:00

Michael is making some great steps today (literally)! While his lung is still collapsed and he's still running a fever, he managed to walk on his own today. He started out with a few steps with Mom and Dad and then took a walk to get water with Nana and Papa - about thirty steps! Here's a video of the superstar walking:

Here too are some pictures of Michael resting and having music time with Kate, the hospital music teacher, yesterday.

2011-09-09T12:42:00.001-04:00

Michael is doing well. His right lung is still collapsed and he still has a slight fever, but these are all things that are not surprising after this type of surgery. They are taking out the line in his groin so that he can hopefully be walking around in a little bit.

He is amazing. Michael is being poked and prodded and still remains as sweet as ever. He is so very brave.

2011-09-08T13:22:00.003-04:00

Here are some pictures of Michael's progress in the PICU. He's working so hard!

2011-09-08T09:17:00.000-04:00

The doctor's just completed their round with Michael. After reviewing Michael's chest x-ray they realized that his right lung has collapsed. While scary, this is not an uncommon side effect of open heart surgery. They will continue to and more frequently give Michael chest PT (basically banging on his back to loosen up the congestion) and suctioning (putting a suction tube down his nose to pull out the congestion - not his favorite activity). They will monitor this closely.

Dr. Q and Rozelle Corda, of the surgical team, came by and said that they were happy with Michael's progress. They are hoping that Michael will be walking around (with an IV pole in tow) before the end of the day.

Last night Meg talked to Molly, who sang her a song (a hybrid of Barney's "Mister Sun" and Molly's "I-miss-my-mommy-song"). Not to be outdone, baby Tommy decided that he wanted to - over the phone - say "Mama" for the first time, causing Meg to burst into a well-needed cry. He'll be able to say it in person in no time.

Much love.

2011-09-08T08:35:00.003-04:00

Michael is doing well. His night was in and out of sleep, but he continues to amaze us. He has a great deal of congestion in his lungs, which is affecting - but only slightly - his saturation levels.

Michael's body is still adjusting to his "new" heart and this may take a little more time while they closely monitor him. He was given Lasiks to reduce his swelling and platelets to help his blood clot. He's thrown up a few times now, so they will be looking to see if this is still a side effect of the anesthesia or if there could be stomach irritation.

They've taken off the restraints that were holding him to the bed and are hoping that this new freedom will not lead to any attempts at tearing out tubes. He still has his catheter, chest tubes, IV lines, and monitoring devices attached. But they were able to remove the oxygen nose tubes and instead he has oxygen blowing on his nose and mouth (a blow by system).

When his wonderful and attentive overnight nurse Corrine left this morning, Michael said, "Thanks Corrine." Sweet as ever.

The doctors are making their rounds now so we'll have an update following that. For now, the focus seems to be on clearing up his lungs so that he can breathe congestion-free and addressing any blood clotting issues.

Michael is amazing. In his sleep, he murmured, "Michael and Molly," so we know that whatever telepathic connection these two have is working and Michael, Molly, and Tommy are anxious to get their rock band back together again.

Thanks for the continued support and love. Carry on with the good work, little Michael.

2011-09-07T18:58:00.000-04:00

Michael continues to do great. He came back from surgery with only minimal swelling and started stirring shortly after arriving to his hospital room. The team monitored his breathing and because he was doing so well on his own, they decided to extubate him. From the hallway, we could hear Michael's amazing nurse say, "You are a superstar!" Not only was he breathing on his own, within minutes he said, "I want water," followed by "I want to go home." His speech and spirit were already progressing.

It is going to be a rough night, with Michael expected to stir, be confused, and want to be rid of his tubes and IVs. He has chest tubes in both lungs, draining out fluid and blood and he has lines to provide medicine. When asked how he was doing, his nurse said Michael is doing great and is a "textbook Fontan case." Just what we wanted to hear.

Tom and Meg are holding his hands, singing to him, and reassuring him that Santa is leaving a gift for when he wakes up. While he's still groggy, he has been opening his eyes for a few seconds at a time and then drifting off back to sleep. As the anesthesia wears off, he'll be weaned off pain medication and will likely be taking just Tylenol by the morning.

Michael's progress will be measured by healthy lungs and no infections but for now, everyone is just so grateful for a successful surgery, a skilled medical team, and a true Irish Tiger Rockstar of a little boy.

2011-09-07T14:26:00.000-04:00

Dr. Q, Michael's surgeon, just came up to talk to Meg and Thomas. He said that everything went well. Because there was so much scar tissue from the previous surgeries, the procedure took longer than anticipated. Michael has an extra special, special heart (that sprouts extra blood vessels) so they had to do an intracardiac total cavopulmonary connection (lateral tunnel). This is one of the options for the Fontan so it was not a surprise.

Michael will come up to the PICU intubated and the next 24-hours will be important. The team will work to make sure that Michael's lungs stay clear and that he does not get any infections and they will plan on taking out his breathing tube as soon as possible.

Knowing how complicated the Fontan surgery is, we are incredibly grateful to have such a skilled team of surgeons, doctors, and nurses who are committed to providing the best care. And we are so proud of Michael, who once again inspires us with his bravery and strength.

Lots of love and way to go Michael!

2011-09-07T14:01:00.000-04:00

Meg and Tom just got word that Michael is off of the bypass machine and the surgeon is closing him up now. He's expected to be on the Intensive Care Unit by 3:00 PM, at which time Meg and Tom will get to talk with the surgeon.

Thanks for the continued love and prayers.

A note from Meg

2011-09-07T13:25:00.001-04:00

I know it's been a long time since I have posted. With three little angels and an injured pelvis, life hasn’t allowed much free time. But the time has come for me to turn to all of Michael’s followers and ask you to pray for our Miracle Michael.

Michael is entering the fifth hour of surgery and is still on bypass. Please pray for him to be strong and brave and to come out of this successfully. Please pray for the surgeons and nurses; that their skills and care carry Michael.

There is nothing more difficult than sending your son into an operating room. But we knew this was part of the deal when we found out he had HLHS. This will make him stronger. I feel calm and strong and very blessed. This is a process that will take time. We appreciate the prayers and well wishes that help, and continue to help, us get through.

Michael has given me so many gifts – and most importantly has shown me a new perspective on life. Going through this, Tommy and I know we can get through anything. There is no problem that cannot be solved and no problem that we cannot handle. And there is nothing more important than family.

Every night I sing Michael to sleep with the song, “Everybody Loves Michael.” It is his favorite song for two reasons: we list all of his family and friends who love him, and because of that, it extends his bedtime by twenty minutes. He knows he is loved and feels the love. He is so blessed to have so much love in his life. It is nice to know that he will never walk alone. And now he knows it is time for his heart to get help so it doesn’t have to work as hard.

One of my favorite stories is of Caitlin taking Michael for a walk around our block. They couldn’t make it twenty steps without someone stopping to say hi to Michael: the Mail Carrier, Starbucks, H&H Bagel, Lester’s, Rite Aid. He is Mayor Mick.

We have tried to raise Michael to not be afraid and not let his special heart make him feel different. We want him to embrace life and enjoy every minute because we know his life is special. And we appreciate being able to wait an additional year to enjoy with Michael – with one of the highlights being the party on Sunday.

It has been such a gift to see him as a big brother to his adoring sister Molly and brother Tommy, who are anxiously awaiting his return home. With Molly and Tommy, Michael has shined and been able to share the special bond of siblinghood.

We are so grateful for the support from friends and family, and strangers and friends of friends. As we face the fifth hour of his surgery, please pray that he comes out ready to fight like the Irish Tiger he is. The next 24 hours will be critical.

He has taught all of us so much about life. He is my hero and greatest teacher.

Please just continue to pray.

Much love,
Meg

(aka Proud Mama)

2011-09-07T10:40:00.000-04:00

While we wait, here are some great videos of Michael rocking out.

To see more videos, visit Sean's YouTube page by clicking here.

2011-09-07T08:42:00.000-04:00

Michael arrived to the hospital and loved playing in the toy room. He, mom, and dad all were wearing his special walk shirts (which he was hesitant to trade in for tiger pajamas). Michael got a little medicine that prepared him for the anesthesia before Meg and Tom took him into the operating room (or, as the anesthesiologist called it, the spaceship). They said it could be as late as 2:00 PM before he's out.

Meg has already started decorating Michael's room with pictures and a giant card that everyone signed at his party. His stuffed animals, books, guitar, and new turtle are all here to make Michael's room a comforting place.

Thanks for the prayers and love.

The world is rooting for you.

2011-09-06T22:41:00.000-04:00

As they prepared for tomorrow's surgery, Michael, Molly, and Baby Tommy had a dance party and put on a rock concert, with a new turtle nightlight providing stars on the ceiling.

Michael will be the first case tomorrow morning, checking in at 6:30 AM. He has been reading all of the Sesame Street and Mister Roger's hospital books and knows that after he arrives, he'll get his new pajamas and, as he's so accustom to, have his temperature and blood pressure taken. He already did a tour of the hospital last week when he got to see the rooms and try out the cherry anesthesia mask. Meg and Tom will be able to be with him as the anesthesia works and then the surgery will last about five hours. This procedure, which will increase the amount of oxygenated blood, will give Michael even more energy to rock!

In the past three and a half years, Meg and Tom have been buoyed and encouraged by the people around them - sending love and prayers to their little Mick. Michael, in his bravery, energy, and amazing spirit of kindness, has reminded us all of how precious life is. We thank you for all of the continued support as Michael goes in to get his new "Superman" heart.

We will keep you updated here on the site. Please feel free to post comments. During the surgery and time in the hospital, they raise spirits and remind Meg and Tom of the amazing network that surrounds them.

Rock on, sweet Michael. The world is rooting for you.

2011-09-05T11:34:00.009-04:00

We had a wonderful celebration! Thanks to all of the love, thoughts and prayers before Michael's surgery on Wednesday morning.

We will keep you posted, but for now enjoy the pictures of a celebration that included a puppeteer, New York firefighters, hula dancers, Stacey's face painting and balloon animals, Santa Claus, and Michael's favorite jam partner, Aaron Short.

2011-08-13T17:19:00.003-04:00

Here are some more pictures from our celebration of Nana's birthday!

2011-08-12T10:20:00.003-04:00

Hi Everyone,

After visits with Michael's cardiologist and surgeon, they've determined Michael's next surgery, the Fontan, will be on September 7th (with his pre-op appointment will be on September 1).

Michael is doing well and you would never guess someone with his dance moves, ability to chase his sister, and sense of humor would have any health issues! But this third surgery, which is part of the Norwood treatment, will help to make sure that Michael's heart is stronger.

In the Fontan procedure, the remaining blood vessels carrying blood from the body are connected to the blood vessels carrying blood to the lungs. This surgery allows the rest of the blood coming back from the body to go to the lungs. The blood with oxygen and the blood without oxygen no longer mix in the heart and with more oxygen-rich blood going to the body, Michael will have even MORE energy to dance!

As always, the love, support, thoughts, and prayers of everyone are appreciated!

Much love.

Summer!

2011-08-11T14:20:00.008-04:00

Hello everyone. Sorry for the very delayed posting. Michael, Molly, and Tommy have had a very busy summer, indeed! Here are some pictures of their time in Cape Cod and Cohasset. We'll work to get you more pictures from their wonderful trip to Buffalo, as well as more of their summer fun. They've spent lots of time with Nana and Papa since Meg is still recovering from her pelvic fracture. She's chugging along with her recovery and still going to PT - but slowly getting better.

Sending lots of love!

Vacation at Nana and Grandpa's

2011-06-07T10:46:00.006-04:00

Michael, Molly, and Baby Tommy had a wonderful vacation at Nana and Papa's house. They loved being with family and friends, exploring the pond, and running around.

We took a train in to Boston and Michael and Molly both got to wear the conductor's hat. A real treat for their first train ride!

We visited Uncle Sean at work in the Massachusetts State House. It was great to meet his coworkers and see the beautiful building and city.

But our favorite moment was when we got to celebrate Nana's retirement at a party filled with beautiful and hilarious tributes. All of Nana's friends from Hingham and Foster School celebrated her love and the contributions that she has made over the past 33 years. They have been amazing friends and such a supportive and thoughtful community and will clearly miss her presence. Congratulations to Nana. We're excited to have you full-time!

Aunt Joanne and Caroline came to visit, surprising not only Nana, but also Michael, Molly, and Thomas.

We visited the farm and saw all of the animals including hens, roosters, goats, chickens, dogs, and of course horses. Michael and Molly both got to feed the horses treats and loved exploring.

2011-05-15T23:05:00.012-04:00

We had a wonderful celebration for Michael's 3rd Birthday! It started off with a rooftop party with Michael's friends, continued in Long Island for the Children's Heart Foundation's Congenital Heart Walk, returned to New York for an evening celebration, and capped off with Baby Tommy's christening. What a wonderful weekend for friends and family to celebrate Michael and his amazing sister and brother.

TEAM MICK Heads to Long Island

A special thank you to everyone who made a donation for the Children's Heart Foundation's Congenital Heart Walk. Team Mick raised more than $2700 and more than $35,000 was brought in just from the Long Island Walk.

Team Mick was ready to go. Unfortunately, Meg's pelvis is still recovering so she walked in spirit. But Team Mick represented well, walking and running through Beth Page Park.

We had a delicious cake from Merritt Bakery and the 150 walkers all sang Happy Birthday to Michael. Quite a special moment.

These fantastic shirts were made by MCO Promotion, Inc. They were so touched by Michael's story, they donated the shirts to Team Mick.

Michael's Birthday Party (part 3)

The celebration continued back in New York, where we danced the night away!

We all sang Happy Birthday (again). Michael loved his cannoli cake!

We had wonderful music accompanying our Long Island and Manhattan celebrations thanks to Aaron Short. Michael loved having his very own concert.

Baby Tommy's Christening

We had an beautiful ceremony and celebration for Baby Thomas' baptism. Thomas was, as always, an angel. He is such a loving, easy-going, and peaceful baby - adored by his siblings.

Disney Vacation

2011-04-24T21:35:00.013-04:00

We had the most wonderful time in Orlando, enjoying dinner with the Disney characters, a day at Universal's Suessland, and lots of wonderful family, friends, and pool time!

2011-04-06T09:50:00.007-04:00

Michael had a successful follow up trip yesterday with Dr. Kleinman, his cardiologist. Michael's inflammation markers have reduced significantly. While they are not back to zero they are within normal range, which is exciting news. Because there has never been a child who has had both Hypoplastic Left Heart Syndrome and Kawasaki's disease, the entire cardiac team will be discussing Michael's case during next week's grand rounds. They will work to determine the best approach and whether to perform a catheterization, and if they plan for Michael's next surgery in July, September, or if they hold off for a whole year.

Dr. Kleinman has been caring for Michael since before he was born. His diligence, expertise, genuine compassion and ability to care for his patients, and their families, with respect and fervor has been invaluable throughout this journey. He has been a champion for Michael, marveled at Meg and Tom, and always provided thoughtful insight and acuity. We are forever grateful for his dedication to providing the best, most knowledgeable care. But a picture says a thousand words:

Meg has started physical therapy for her pelvis fracture. With Michael's good news, she is now going to focus on her recovery! Molly is doing wonderfully. She dances around the apartment, plays with her animals, and is constantly wanting to "Go, go, go!" Both she and Michael are loving the "baby." They run up and give him kisses and always want to hold him. In return, Baby Tommy follows them around the room with his eyes, looking like he's ready to join in the fun. And although he's a little young, the sight of his mom brings a big smile to his face (or he's just coincidentally gassy).

Thanks for all of the love and support!

2011-04-05T08:58:00.001-04:00

Michael is on his way to the hospital for his follow up appointments with his cardiologist and rhuemetologist. They will do some blood work and an EKG. We'll keep you posted and thanks for the thoughts and prayers!

2011-03-21T21:48:00.005-04:00

2011-03-21T10:40:00.004-04:00

Dear Family and Friends,

As you probably know, Michael turns 3 years old on May 14th. To celebrate the three years of joy, laughs, love, and kindness Michael has given all of us, we will be walking in the Congenital Heart Walk on Long Island – which just happens to fall on Michael’s birthday.

The walk benefits the Children’s Heart Foundation – an incredible organization dedicated to improving congenital heart defect (CHD) research. Through 2010, the Children's Heart Foundation has contributed an astounding $4.1 million toward 41 revolutionary CHD research studies. As the country's leading organization solely committed to CHD research funding, CHF dedicates itself to bringing health, hope and happiness to children and families impacted by a CHD.

Here are just some of the facts about CHD:

Nearly two million children and adults are living with a congenital heart defect (CHD) in the United States.
Each year approximately 40,000 babies are born with a CHD, making it the country’s #1 birth defect.
Thanks to increases in survival rates, the number of adults living with a CHD rises by 5% a year and adults with CHDs are living longer, fuller lives than ever before. Your support will continue the progress.

As we take to the streets of Bethpage State Park in Farmingdale, New York, we ask you to consider making a tax-deductible donation (any amount helps and is appreciated) or, if you can, join us in walking! Follow this link to visit the TEAM MICK web page and help in our efforts to support Congenital Heart research.

We appreciate all of the support you have given over the years and look forward to celebrating “Miracle Mick” - and all of the love he has given back.

Much love,
Team Mick

2011-03-18T14:01:00.003-04:00

Michael went to the pediatrician yesterday because Meg was concerned that Michael still hasn't fully regained his energy or weight and that he's still a little pale looking. The pediatrician recommended Michael see the cardiologists, who recommended an electrocardiogram (ECG). The results from today's ECG came back and they feel confident that there are no aneurysms and that Michael is recovering nicely. There is a chance that these are the signs of the start of a viral infection, but they are hopeful that its just still part of the recovery process. In the car ride back from the hospital, Michael was in the backseat singing and counting the taxis. So very, very precious.

Meanwhile, Molly and baby Thomas are doing great. Molly is talking and dancing up a storm and has definitely gotten her mom's rhythm. Thomas is so sweet and just loves to be held. Both Michael and Molly adore him, running over to give him kisses or wave while saying "Hi,Baby."

2011-03-11T09:45:00.002-05:00

Michael's follow up appointment went well. The echocardiogram showed no change, but Dr. Keinman, Michael's cardiologist, feels confident Michael will come out of this without any permanent damage. Michael will have a follow up echocardiogram within next month and after that, they will decide when to do the next surgery.

The dilation of the arteries is mild – only slightly above the norm for HLHS kids - but they will not operate with any type of dilation so they will keep a close eye.

Meanwhile, Michael, Molly, and baby Tommy loved the company of Julie, Bryan, and Uncle Jay. They held band jam sessions, played barn, and just loved the attention.

The amazing Mick (and team) does it again!

2011-03-10T12:30:00.003-05:00

Michael is heading to the hospital for his check up. They will run some tests and follow up to make sure that the Kawasaki treatments worked and to gauge how his heart and health are holding up. He has been doing wonderfully - loving being home.

We'll keep you posted on how today's appointment goes.

2011-03-04T18:34:00.008-05:00

Michael arrived home Thursday, running through the front door yelling, "I'm back! Molly, Baby, I'm back!" Molly ran up to Michael, they hugged, and then they both started laughing at nothing specific or at least apparent to adult eyes. In sync, they ran over to say hi to the baby and "tickle, tickle, tickle" him. It was such a happy moment that Meg's eyes welled up.

Meg and Thomas are monitoring him closely but Michael is glad to be back to the comforts of home and siblinghood.

2011-03-03T12:38:00.003-05:00

Great news! Michael is making his way home. His left coronary artery is still dilated but his medical team will monitor this closely. Columbia Presbyterian has never had a an HLHS patient who contracted Kawasaki disease before having the Fontan procedure (the third surgery in the Norwood series). Because of this, they will push off Michael's next surgery for as long as possible, allowing time for his arteries to repair. They are all grateful that his left coronary artery was not severely damaged.

Because of the Kawasaki treatment, Michael will be unable to get immunizations for the next year. He's had all of his regular ones to date, so we'll just need to be extra careful of exposure to the flu.

The little guy is eager to get home to see Molly and baby Tommy. Here's to a quick recovery. Thanks to all for the love and support.

2011-03-02T20:56:00.002-05:00

Michael's tests came back and they believe that the treatments have worked! They will continue to monitor the inflammation but expect that it should continue to go down over the next couple of months. Michael is at the hospital with his dad so that he can be watched for any fever but everyone is hopeful that this is under control. He is in amazing spirits and managed to say hi to everyone. Meg and Tom have made the experience as much akin to sleepover camp as possible and despite missing his sister and brother, Michael thinks the children's wing is a little getaway.

2011-03-02T13:03:00.002-05:00

Well, the good news is that Michael is in great spirits. He and his mom were heading outside for a quick dose of fresh air and Michael was excited, singing "Go, go, go!"

They are now just waiting for the CRP test results which will reveal whether the IV Kawasaki treatment has worked and the inflammation has gone down. As long as it was successful, they will monitor Michael overnight to make sure his fever does not return and then release him tomorrow.

He is such a trooper and Megan and Thomas have been, once again, remarkable in their ability to comfort, care, and advocate for their precious little guy. They appreciate all of the thoughts and prayers, support and love.

We'll keep you posted on the test results...and on Michael's first outdoor venture in quite a few days.

2011-03-01T10:52:00.002-05:00

Well it has been a whirlwind of a month. We welcomed the adorable baby Tommy into the world but unfortunately, Meg fractured her pelvis, requiring her to be on bedrest. Nana and Grandpa saved the day by taking Michael and Molly so that Megan would actually stay in bed.

Meg then went to Boston for a couple of weeks and she and the kids had a wonderful time seeing relatives and friends. Unfortunately, Michael spent much of his time fighting off a fever that wouldn't go away. Doctor's repeatedly thought Michael had a viral infection but his mom knew better. Thanks to her persistence, Children's Hospital in Boston determined that Michael had Kawasaki disease - a condition that causes inflammation of the arteries. They treated Michael over the weekend and released him on Sunday. He was so good - allowing the team to take blood, insert IV's, and proving to be his friendly self, all while battling this. No one could believe that someone in such good spirits could be as sick as he was.

Michael, his mom and dad, and Molly and Tommy all headed back to New York. Sunday night, Michael got sick again and was rushed to Columbia Presbyterian. They believe that the first treatment did not work and so have given him another. If this doesn't work, they will consider using steroids to fight the disease.

The good news is that while the test results from Children's said this was a severe case of the disease, Columbia Hospital ran additional tests and does not think this is a severe case. While Michael's left coronary artery is inflamed, it is hopeful that the treatment will reverse this. They will be performing another echocardiogram to confirm all of this, but we are grateful for this turn.

Michael is amazing. He is friendly with all of the doctors and nurses and meets new friends around every corner. He keeps telling everyone that they need to meet his new baby brother and sister. Meg and Tom are keeping him occupied and entertained at the hospital, where he'll be through Thursday at least. They are so grateful that Nana and Grandpa are here to hold up the fort.

Thanks for all of your prayers and thoughts. While this is still a serious condition, Michael once again manages to fight back with the will of a tiger and the sweet smile of a little boy defying odds.

2011-02-13T21:12:00.003-05:00

Welcome home baby Tommy! Here are some pictures of the little guy (and some additional Christmas ones).

2011-02-03T16:03:00.003-05:00

Baby Tommy is doing great! He's 21.5 inches long, eating well, and sleeping soundly. His brother and sister are anxious for him to join them at home but are loving their time with Nana!

It's a Boy!

2011-02-02T21:54:00.004-05:00

Welcome to the world little Thomas! Weighing in at 9 pounds, baby Tommy joined the world at 11:53 PM. He made a few small cries, stretched out his big feet, and showed off his full head of hair. He's already opened his blue eyes and is now resting with his Mom and Dad.

2011-02-02T19:10:00.003-05:00

Meg's received an epidural and baby Tommy's heartbeat is strong. At 4 centimeter's dilated, this bambino is starting to show signs of being ready to join us.

Meanwhile, Michael and Molly made some cookies with Nana to welcome their baby brother to the world. They are such good mixers.

We're taking bets on arrival time ("Price Is Right" rules).
So far, we've got:
Meg: 10:30 PM
Thomas: 11:15 PM
Caitlin: 12:04 AM

Ante up, folks!

2011-02-02T10:47:00.002-05:00

Well, today should be the day Michael and Molly welcome their new baby brother into the world. Because little baby Tommy loves the womb so much, they will be inducing Meg. We'll keep you posted throughout the day and are looking forward to meeting the new little guy!

Wishing Everyone Happy Holidays!

2010-12-22T23:28:00.005-05:00

Michael and Molly send lots of love to you all! Wishing you a happy, healthy, and peaceful Christmas, Season, and New Year!

2010-12-19T18:14:00.002-05:00

Wishing Everyone a Happy Holiday Season!

2010-12-06T12:47:00.002-05:00

The kids had a wonderful time during their Vermont Thanksgiving, surrounded by their big cousins and great aunts and uncles.

Happy Birthday Molly!

2010-11-11T21:47:00.004-05:00

Well, you can tell that the blogging crew has been a little lax these days. We're happy to resume with some updates on Molly's 1 year birthday. It's hard to imagine that one year ago today this little bundle of joy joined us. Molly continues to amaze us with her first steps, talking up a storm, and bubbly, adventurous personality. She and Michael have a remarkable connection and they continue to crack each other up.

Grandpa's knee surgery went well and he is working on his recovery - a slow but improving process.

We'll try to get more pictures up of the kids' fun trip to Buffalo, Halloween pictures, and all of their latest adventures.

Sending lots of love to all.

2010-09-27T10:47:00.002-04:00

Good luck today Grandpa! We love you!

2010-09-26T12:42:00.004-04:00

Good luck to Grandpa for his knee surgery tomorrow! We love you and can't wait until you have two good knees to run around after us with.

2010-09-08T15:28:00.002-04:00

2010-08-13T19:38:00.001-04:00

2010-08-11T20:44:00.005-04:00

hahaha I am 9 Months TODAY !!!!!! Michael is so silly he always steals my passies. We love hanging out in my crib .

Michael Reads me stories every morning while mom gets ready for work. He is the BEST big brother!

Hi Everyone! My Finger is doing much better! It was a long four week recovery but all better now.

Auntie Sarah came a few weekends ago, we had a wonderful time ! Auntie Sarah is so much FUN we LOVE when she comes and Visits !

2010-07-29T20:13:00.001-04:00

2010-07-22T08:03:00.001-04:00

2010-07-21T21:11:00.003-04:00

2010-07-21T08:58:00.000-04:00

2010-07-19T20:19:00.003-04:00

2010-07-18T21:39:00.002-04:00

Cape Cod Vacation

2010-07-18T17:15:00.007-04:00

Great News!

2010-06-16T20:36:00.002-04:00

Well, great news from Michael's appointment with his cardiologist Dr. Kleinman, who has carefully watched over Michael since he was in the womb. During yesterday's appointment, Dr. Kleinman said that Michael is doing so well he can hold off until next May to have his next major surgery! Meg and Thomas are ecstatic since this means he'll have another whole year to grow strong.

Congratulations to the little tiger and his wonderful Mom, Dad, and magnificent sister!

Thanks for all of the love, prayer, and good thoughts.

YESSSSSSSSSS, I have my Brother BACK !!!

2010-06-12T13:05:00.009-04:00

He took my passie but I don't care. I am so happy to have him back in my Crib to Play :)

WOOOOOoooooHooooOOOO Michael is BACK !

AWWwwwww Mick I Love Ya !

Don't worry Molly every time I have to go away I will come back to you. I LOVE you Too!

2010-06-08T21:57:00.002-04:00

Welcome Home Michael!

2010-06-08T17:53:00.003-04:00

This afternoon, Michael was greeted home by a life-sized Elmo balloon and an ecstatic sister. His echocardiogram went well and he has been his usual hilarious and sweet self. After Michael's cardiologist reviews all of the results Meg and Thomas will have a better idea when the next surgery will be scheduled. Way to go Michael!

2010-06-07T22:29:00.005-04:00

After the surprise procedure, Michael was with his Mom and Dad, who comforted him as he started to wake up. Within a few hours, his kind and friendly personality was shining through his slightly swollen body. The doctors and nurses all received a welcoming "hi" and were blown kisses as they left the hospital room. When he could walk through the halls, I.V. in tow, he encouraged all the kids to come with him on his walk and to sit and read his books together. Megan and Thomas are remarkable in every way and, with the help of chocolate and stickers, are turning this surprise sleep over into a slumber party.

Meanwhile, Molly's stomach is doing much better and she finally made her way from pedialyte to formula tonight. But with every turn of the knob and running footstep in the hallway, she jerks her head to see if her big brother is back; no one else is quite as entertaining.

Michael should be home tomorrow, but we'll keep you posted. As always, sending lots of love.

Here are a few pictures of the Mighty Mickster.

2010-06-07T12:00:00.003-04:00

Michael's catheterization is done and he's now recovering with his mom and dad. During the procedure, the surgeon saw that tie that was put on the left vena cava during the last surgery had become undone. They were able to plug it permanently and felt very fortunate since it would have complicated Michael's next surgery were it not discovered now. Because of this procedure they will keep Michael overnight to monitor him and make sure there are no complications.

Meg and Thomas are with the little tiger as he's waking up and trying to process all that's going on. They appreciate all the love and prayers that surround them and look forward to Michael's return home tomorrow.

From last week, here's a shot of Michael and his Mom.

2010-06-07T08:41:00.002-04:00

Michael woke up this morning all smiles. Just by saying "hi" he manage to make little Molly, whose had a little stomach bug, laugh and smile.

Michael and his mom and dad headed up to the hospital for his catherterization. Michael was great and just headed in now. It should be a couple of hours before he's out but we'll keep you posted. As always, he is a trooper.

Please keep our little miracle Mick in your thoughts and Prayers

2010-06-06T22:38:00.004-04:00

So tomorrow is the first step in preparing for Mick's next open heart. He will be getting a heart Cath. at Columbia Children hospital. He will be the first case tomorrow. He is scheduled to be at the hospital at 7am and will start shortly there after. Michael is doing Wonderfully ! This is just part of the deal and he has to get the Cath done. It will be a two - four hr procedure and a 4 - 8 hr recovery. We will be home latter on tomorrow night. We expect Mick to do GREAT but of course appreciate all your thoughts and prayers.

He is the BEST two year old and BIG Brother. Molly is a dream baby and adores her big brother. She has been sick with a stomach bug and I have been forced to separate them. Molly cries when she sees her brother but can't play with him. We are incredibly blessed with the two most amazing children and to have them truly love one another.

I will have Caitlin update tomorrow as soon as we know anything.

Thank you

Love to all

2010-06-06T21:58:00.008-04:00