Thursday, December 30, 2010

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!

Monday, December 27, 2010

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.

Saturday, December 25, 2010

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.

Friday, December 24, 2010

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!

Thursday, December 23, 2010

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.

A Lot Can Happen in a Week

What a difference a week makes! Matthew is celebrating his first week birthday today. It's amazing that in the span of a week this little guy has done things that many of us won't do in a lifetime.

Let's recap what Matthew has accomplished in only 7 days:
  • Been born (this took some help, but he was definitely an active participant)
  • Taken a jet ride
  • Had his first bath (ok, hopefully this isn't new to any of us)
  • Visited two different states
  • Learned to use a pacifier
  • Undergone a complicated heart surgery
  • Stayed strong during recovery
  • Made countless friends, including many through this blog and Facebook!
Matthew continues to progress well and we can credit the amazing medical staff along with the army of people praying for him and our family. It has been especially nice of all of the heart parents and kids to share their stories and support -- Matthew is lucky to have a an extended "family" watching out for him.

Wednesday, December 22, 2010

I Will Survive!

Check out Dad here!
Hi Friends, first I have to say thank you to the many, many of you who have been sending lots of love, energy and prayers for me and Mom and Dad the last few days. Your support has been so important and helpful for us during this time.

Wow, where to start! Well, two nights ago I knew something must be going on. Mom and Dad looked a little more concerned than normal. I thought maybe it was just because Dad was still worried about Mom. She got sick that morning and had to go to another hospital to get help. She still looked a little rough when she got here but I was just so happy to see her and Dad. She looks way better today, by the way.

Anyway, it turns out their concern wasn't about Mom but about me, which I realized when people in masks and colorful gowns came and wheeled me away from Mom and Dad. I was really scared at first, but then I saw them putting stuff in those plastic tubes and suddenly I was floating on clouds, seeing gumdrops and lollipops and didn't even realize I wasn't with Mom and Dad anymore.

Tuesday, December 21, 2010

Matthew's First Surgery

Matthew's aortic valve dilation was delayed until last night, and everything went well there. The delay was a blessing of sorts, since Nikki ended up in the hospital herself yesterday morning. She was released with meds and seems to be doing well now.

The dilation procedure is not one that produces immediately visible results, but is an important step to complete before the surgery. Matthew is scheduled to head into the OR sometime this morning for his Norwood procedure. Dr. Baird at Boston Children's is doing this surgery and we've heard many wonderful things about him.

This is very important, and also very major surgery (the link above explains this procedure). They will access Matthew's heart through a vertical incision in and separation of his sternum. He remains intubated from last night's procedure. The surgery should take 6 - 8 hours. Please remember William, Nikki and Matthew today.

Monday, December 20, 2010

All Is Well

I just spoke to Gary (Nikki's dad). Matthew is resting, having done well with his procedure tonight. Will and Nikki have been sent "to get a good night's rest" in anticipation of tomorrow's surgery. The surgery is scheduled for 7:30 a.m. est and will take about 6-8 hours. Please continue to pray for them.

Update on Nikki

The doctors think Nikki has a spinal headache from the epidural. She is in triage now getting pain medicine and should be able to leave soon and be back with Matthew and Will!

Prayers for Nikki and William

All, I don't have any details but please remember Nikki this morning. She is in the hospital (as of about an hour ago) and is being assessed now. Please remember William too, as Nikki is in one hospital and their newborn is in another having a heart procedure this morning.

I'll update you when we know more.

They're Putting A Balloon Inside Me!

Hi Friends, it's a busy morning here at Boston Children's. Yes I tried to stay awake like I said last night, but Mom popped this Christmas hat on me and then when she held me I couldn't help it... next thing I know I was waking up as she was putting me back in my bed.

At 9:00 (Eastern) this morning I'm going into the "cath" lab. (Man, that's really hard to say without any teeth. I did have one when I was born but somebody pulled it out!)

Dad explained to me that they are going to put a balloon in my body (I wonder if it's one of those silver ones with writing like I have in my room). He says the doctors will go through my leg and run this balloon up to my heart.  Good thing I'm still short; it won't have to travel so far!

Sunday, December 19, 2010

I'm Staying Awake Forever!!

Mom finally arrived and I swear I am never taking my eyes off this woman again. Even it that means I never go back to sleep! Mom looks kind of tired and really worn out, but her eyes still lit up just like the first time we saw each other. Even exhausted she's just beautiful. Dad was really happy to see her too. I think he's a little relieved as well (but don't tell him I told you that).

Dad and I had a lot of fun, just us guys hanging out, but the room just feels softer since Mom came in. Now I see why Dad decided to hold on to her! I'm so glad he did, too. Mom and Dad are talking about something they are going to do to me tomorrow.

They say I might go to a lab that has a lot of cats in it. I'm hope I'm not allergic. Oh, no Aunt Jen is transcribing and she explained it's a "cath" lab, for something called an Aortic Valve Dilation. I told her go ahead and explain what that means to you guys but I guess she's as clueless as I am about this one.

Looks like Mom and Dad are done talking about the serious stuff and headed back this way. I've gotta go! I hope they'll pick me up again... I'm awake, I'm awake!

Mom is Here!

Just got word from Gary (Nikki's dad) that he and Nikki made it to Boston and she is getting settled and spending time with Matthew. I know she's happy to finally be reunited!

Counting Down

Hi again, friends! Today is the day Mom comes to be with me and Dad. I'll tell ya, Dad is great and I'm super happy to have him, but there's just something about a Mommy that no one can replace (I mean seriously, just look at her here, will ya!). It will be so much fun for all three of us to be together again.

It's been a busy few days here at Boston Children's. They had told me they were going to try again to stick that needle in my belly button. Ouch the first time! But Dad said having it would make it so they don't have to keep sticking me other places. But then all the doctors and nurses got together to talk about my heart. They decided they would have surgery on me the very first day of my first winter, Tuesday (12/21).

Friday, December 17, 2010

My First Big Adventure

Dad tells me I have lots of great friends already. That is too cool, since I hear making friends can be challenging sometimes. As Aunt Jen told you, I showed up early. It's like this... I was doing my daily exercise to try to strengthen my heart. I found this jump rope in here that worked great to get some cardio workouts in each day. Well on Wednesday I was doing my normal routine and I ran into some trouble. The jump rope started getting all twisted around my neck, which was kind of annoying. I pulled and twisted and contorted (Dad taught me that word a little while ago) my body around to try to get free, but all I managed to do was to pull a knot in the cord (Dad says he's going to teach me knot-tying soon, so I don't have that problem again).

The Best Laid Plans...

Well, surprise, Matthew decided to make plans of his own! He's resting (or maybe undergoing more tests) at the moment so he asked me to write and update you all. Get ready for this.

Matthew decided to make his grand appearance yesterday morning, three days before William and Nikki were scheduled to fly to Boston to await his arrival, and alas, the child's agenda trumps all. He was born at Sacred Heart in Pensacola, FL and was emergency transported last night to Boston Children's.

Matthew was born with the umbilical cord wrapped around his neck not once, not twice, but three times, as well as a true knot in the cord. I guess it's a good thing he had a mind of his own, as well as a very skilled doctor to deliver him.

Sunday, December 12, 2010

My First Blog Post

Can you believe this? I'm not even born yet but I'm already blogging. Pretty cool, huh? I didn't know they made computers small enough to fit in Mom's belly with me! Okay, okay, I'm not really typing this, but I'm dictating and right now my Aunt Jen is transcribing for me.

You're probably wondering why I'm writing to you before I've even taken my first breath. That's understandable. You see, my heart isn't growing the same way other babies hearts grow. My Mom and Dad first learned I had a problem in a routine doctor visit a few months ago.

I was so sad to hear Mom crying, and I heard her say that when Dad went out of the room he cried a lot as well. I sure don't want to be the reason that they are sad so I've been down here working ever since. I've been talking to my heart and telling it to please try to catch up with the rest of my body, so that Mom will only cry tears of joy when she sees me. I don't think it's working though.

For the last week both my parents have been busy trying to find lots of warm clothes and get all the supplies they need. I hear we're going on a long trip and am I ever excited! I haven't been away from my home in Daphne, Alabama yet, but I hear it's really cold where we're going.

Mom was telling my Mimi that we have to go to Boston for me to be born. What an adventure this will surely be! There is a hospital there with specially trained doctors and nurses who will know what to do with my faltering heart when I have to leave this cozy home. We're leaving December 19th.

Even though she was whispering, I heard Mom say that I'll have my first major surgery when I am only 7 days old. I think they are really sad they will be away from all our family over Christmas and New Year's. I will be born by January 3rd at the latest, and I'm sure Aunt Jen is hoping I'll come the day before, on her birthday!

I hear we'll have to spend another 6 weeks or so in Boston. Mom is a nurse who takes care of other newborn babies and my Dad is a tech at the same hospital, and he's also in nursing school. I hate to be such a burden on them but I sure will love them with everything that I have. I waited a long time for them and I know we have lots of really great times in our future.

I can't wait to meet them!

Thanks and Blessings!
Baby Matthew