May The Force Be With Us

Hi Friends! Sorry I've been quiet for a while, though Mom wouldn't say I've been so quiet. Aunt Jen was off sailing around some islands, then starting a new job and unable to transcribe for me for a bit. Oh, I have so much to tell you.

First, I continue to be most excited about mealtime, and Dad keeps comparing me to weeds. I think he must really like weeds because he sure seems to like me. He even let me try on his favorite hat the other day!

My First Week Home!

As I was saying...

Hi Friends! As Mimi has shared with you, it's been a busy time lately. Who am I kidding? It's been busy since the moment I took my first breath. Well, I was right about making it home from Boston without any problems. It was kind of fun too. People kept making a fuss over me, and taking care to be sure I was comfortable and safe. People are so nice.

We got home without any trouble, in spite of all the snow that tried to keep us from leaving Boston (Mom said it was so much snow that it got its own name: a blizzard). But I guess that lots of people travel while they are sick and Dad says that on the airplane you don't get fresh air, only the same air everyone is breathing the whole time. So somewhere along the way I picked up an infection.

Quick Update

Matthew's home!! He has been at his house in Daphne, along with his mom and dad for over 24 hours--first time ever!!! This evening he met his big brother, Samson (a wonderful, affectionate, sensitive German Shepherd) and the family was whole again.

I apologize that I don't have any updated photos of Matthew but we are giving mom and dad the time they need to relish being in their home with their family. I will post updated photos of that cutie as soon as I have them.

As Matthew's Mimi, I have been overwhelmed by the outpouring of love from so many people. As a family, we all appreciate each of you for your support and encouragement.

Until CHD entered our lives, we had no idea that there are so many families in our immediate area alone who are living with various congenital heart defects. Thanks so much to each of you for reaching out to us. We promise to be here for you as well.

Dottie (Matthew's Mimi)

When Is My Family Coming Home?

Our family feels like we are on Mr. Toad's Wild Ride at Disney! First of all, I'd like to say 'thank you' to all of our family and friends who are sending their love, support and prayers. A special thank-you to all of our "heart family" who have been so supportive.

Matthew is scheduled to come home from Sacred Heart Hospital in Pensacola tomorrow. His blood work indicated that he had an infection (airplanes--closed in places that harbor germs!! The up-side is that they do get us from point A to point B!). After treatment with antibiotics, our little guy seems to be 'on the mend' and is ready to come home and meet his big brother Samson!

Home... Briefly

Quick update from Aunt Jen: as you can see Matthew arrived home last night in great shape. He traveled well and everyone was thrilled to be home. William and Nikki had the first night together in their own bed since early December. This morning however, Matthew developed some problems. He stopped breathing, turned blue and scared the hell out of his Mom and Dad.

He checked in at Thomas Hospital in Fairhope, where they did an initial check, then transferred him to Sacred Heart Hospital in Pensacola (where he was born) for further evaluation. He will likely spend tonight in the ICU, and beyond that... well we're all waiting to see.

Please remember him and William and Nikki and we'll keep you updated as we know more.

A Bump In Our Road To Complete Recovery

Matthew & mom Nikki left Thomas Hospital ER at 6:15 pm in an ambulance to Sacred Heart Hospital/Pensacola. Daddy Will was close behind. Matthew had a couple of episodes this afternoon of low oxygen saturation. Sacred Heart pediatric cardiologists are going to monitor him overnight. He was strong and complaining loudly about the intrusion into his "private time with mom and dad" when he left TH ER. Please pray for this tough little guy.

Our local pediatrician Dr. Paula Drummond assured us that "there will be several 'scares' like this in the next few months but we should expect that Matthew will be just fine over the long term." That's our plan, Dr. Drummond, we thank you for the reminder.

As Matthew's family, it is terribly frightening, we appreciate knowing that this is part of the journey. We thank you all, our friends, for your love, prayers, and concern.

Dottie, "Matthew's Mimi"

2 seconds ago · · · Comment

Home at Last!!

Will, Nikki, and baby Matthew arrived safely at the Pensacola airport tonight at 11:30 p.m. They are now safely in their home in Daphne. They are exhausted but SOOOOOO happy to be home! Matthew was great on the flights home and seemed quite happy to be in 'Alabama the Beautiful!'

I'm (Almost) Home

Feels like home to me

Hi Friends, we are still hanging out in Boston (man you should SEE all the snow outside our window!). I know we aren't at our real home, but as you can see, this is all the home I need.

As Mom and Dad said, our flight today didn't happen either. I have no idea how they knew so much snow was going to fall today and it would cancel our flight home. They are so super smart.

I hear we are all set to get on a plane tomorrow though, and Mom and Dad both seem really hopeful that this time the trip will happen. For now, I'm catching up on my beauty rest here in New England, so I'll be bright-eyed and ready to meet all my wonderful friends and family when we get home tomorrow night.

Here's hoping...

XOXOXO
Matthew

On Second Thought...

My first night in a regular bed!! I LOVE being swaddled.

...maybe we'll just stay here in Boston for a while! Hi Friends, Mom and Dad are super busy right now so I have some time to send a quick update. I left Boston Children's Hospital yesterday for the first time since the day I was born! It is REALLY cold outside too! We all slept at the Yawkey Center last night, where Mom and Dad have been staying the last several weeks. It was kind of hard for me to sleep without people coming in the room every hour fussing over me. It was so quiet I could hardly rest at all.

Matthew is Cleared for Takeoff!

Got some great news last night from Nikki. Matthew is cleared for discharge! The three of them have a flight home Tuesday at 4:00 p.m. The final test was to see how Matthew did in his car seat and if his oxygen levels were affected. He passed with flying colors! Doesn't he look cute practicing for his flight?

Looks like all of the love and prayers are working. I know the challenges are far from over but it amazes me that Matthew is doing so well and that he will soon get to see his beautiful nursery meet the rest of his family for the first time.

Please think of Nikki, Will and Matthew tomorrow as they travel!

Perspective

Hi Friends, many people have been worried about and praying for me for a long time. I know that what's wrong with my heart is very serious but I was thinking last night while looking out my window on the snowy Boston skyline. I'm just learning that, by comparison, maybe this is not so bad. Monday is the 3rd birthday of another little guy who is here from Spanish Fort, AL, next to my home town. He is here in a special room where they are giving him medicines and keeping his heart going until he can find a new heart. I hear he's first on the list so I think he has a really good shot.

Family Week!

Aunt Jen, teaching me how to blog

Hi Friends, thanks for all who have been asking about me. Sorry for not writing sooner, but I've been so busy this week with all my family who have been here to visit and entertain me! My goodness it's been such a fun and exciting week. I'll try to catch you up before I fall asleep again.

First, I'm starting to feel like a prince - there always seems to be someone in line to hold me, feed me, even change my diapers. The other day my Aunt Jen, Aunt Addie and Uncle Jamie all teamed up to change the mess of a diaper I had made just for them, right after Mom and Dad left the room. You should have seen the whole thing. I was laughing so hard at the three of them. Let me tell you, I decided to challenge them. As soon as that diaper came off I stuck both my feet into the mess down below. While Aunt Jen was cleaning my feet off, I decided to potty again, just to see how they'd react. Oh, it was a hoot watching the three of them in action!

All Smiles

Hi, again! Sorry we've been so quiet the past few days. Matthew is still doing well but won't go home this week like we thought he might. This week the doctors have been running different tests on Matthew's heart and lungs to see how they look post surgery.

With all of his family keeping close watch, Matthew shows us more and more of his personality each day. He is a good, happy baby who sleeps a lot and only cries in short bursts if he needs his diaper changed. He has started waking up and getting restless before feeding times and is regularly taking his full bottle. He's now up to 6.1 lbs and growing!

It Takes a Village

Matthew has a lot of company these days! He's being spoiled rotten by one grandmother, aunt and uncle, with another grandmother and aunt arriving tomorrow. He is absolutely adorable and we fight constantly over who gets to hold him. Uncle Jamie even changed a diaper today! It was the first time in his life (for Jamie, not Matthew) but luckily he had some help from the pros.

Super Matthew

Super Matthew!

Hi Friends! I haven't written to you in a few days because the days have been so busy. A couple days after the nurses took that breathing tube out of my nose they took lots of other tubes and that drain out as well. I'm practically a free man now.

Around the same time they moved me out of that super high tech room and into a room with one other baby (he's kind of noisy - he burps a lot and he makes, well, other noises too). Of course I keep getting the hiccups so maybe he's writing on his blog about that other baby with hiccups sharing the room with him.

However, the most important part, and the reason I haven't written, is that Mom and Dad have been holding me all the time. I can't really explain it but as soon as they touch me my whole body feels better. It's like some kind of magic healing touch they have. They also started giving me yummy milk through my mouth, rather than putting everything right into my belly. My taste buds are oh-so-happy!

Finally Holding Matthew!

Proud, Happy Mama

After more than a week of being unable to hold their newborn close, these two pictures reveal the joy through the exhaustion, don't they?

Proud, Happy, Papa

Quick Morning Update

Boston, After the Blizzard

I have a quick update to share with you from William this morning. Matthew is being discharged from CICU today. Last night they pulled his arterial line. This morning they plan to pull his last common atrial line, as well as his pacer wires and Blake drain. After that he will only have peripheral IV's remaining

Very soon William and Nikki will be able to pick up and hold Matthew whenever they want. William says "not to mention change all of his dirty diapers." And they couldn't be more excited about the prospect.

Merry Christmas Surprise!

Me and my main man, Santa Claus!

Merry Christmas Friends! Can you believe Santa came to see me in the hospital!! I guess that jolly man really is magic. Not only is this my first Christmas day, but as of about 5 minutes ago it is also my first day without a tube breathing for me since my surgery. Oh it feels so good to have that tube out of my nose and chest. My lungs feel really strong and healthy, and I can feel my heart getting stronger every day.

Mom was so happy when that tube came out that she cried. Dad was all smiles too, and I'm just so happy to see them both look a bit less worried every day. They came back last night telling me stories about their new friends Darren and Maureen and how nice these folks were to take good care of them and help make them feel a little bit of normal Christmas for a few hours. I can't wait until I can go all these fun places with Mom and Dad.

I don't know if Dad's work with the sick women and children and Mom's with the new babies at Thomas Hospital has helped get them ready for me and my heart trouble, but I know they are really strong. I think they are starting to get sad being around all the other babies and their mommies and daddies though. I heard Dad telling Aunt Jen that there is a little one here from Spanish Fort, AL, not far from our home in Daphne. They are here hoping and praying for a new heart for their 3 year old.

A Star On Christmas Eve

Hi Friends! To say my first full week of life outside Mom's belly has been eventful is certainly the understatement of the year. Of course I've been telling you guys about all the activity from the first moment I squeezed out of my cozy aquatic home and onto dry land, into the hands of the nice lady doctor there waiting for me!

I told you guys about the awesome plane ride from Pensacola to Boston, seeing Lady Liberty from the sky, all the super nice doctors and nurses in Boston who did some plumbing work on my heart, and all the other cool things in between.

It's been so fun hearing from some of you out there and knowing that so many people are interested in our story, and care about me and Mom and Dad so much. Well it turns out a lady named Debbie who works for a big news station in Mobile, AL (near where our home is in Daphne) has been reading about me too!

Praying for Pee

Before Matthew was born, and all throughout the pregnancy, one thing I never thought I would hope for is dirty diapers. Nikki will be the first one to tell anyone that up until Matthew was born I had a baby-phobia!

So I find myself in a rather unique position currently in so much as I'm sitting on the edge of my seat, eagerly awaiting every golden drop of baby pee. You see much the same as adults, Matthew's surgery has caused him to retain fluid. Now unlike grown-ups whose kidneys have been dealing with this sort of thing for years, it takes babies a little longer to deal with all of the fluid accumulation.