Coming Home Again!

Check it out! I have a foot!
This is the greatest day of my life!

First, apologies for the delay on recent updates. Both Mimi and Aunt Jen are in Gulf Shores this week for Hangout Music Festival. While we are keeping close tabs on baby Matthew, we have not made the time to sit and update the blog.

Next, and more importantly, I bring you great news... Matthew is being discharged this morning from Boston Children's Hospital. He has made a fantastic recovery from his Bidirectional Glenn Procedure (we expected no less, of course!). Just like in December during his Norwood Procedure (first open heart surgery) the one struggle he had was coming off of the O2, but again, he made a phenomenal recovery this week.

We are working on finding new flights for the three of them, to get them back home to Daphne tomorrow.

Post-Surgery Update

M post-surgery,
on "blow by" O2

Matthew is doing well since his surgery ended Friday night. He was extubated yesterday afternoon and spent most of a day on "blow by" oxygen. This means there is a tube blowing oxygen into his face, rather than the nasal tube of direct oxygen.

However, he did end up needing to have the nasal tube, which you can see in the picture here of the first time Mom got to hold Matthew since before surgery. By all accounts he's doing really well and some staff have remarked "he could be out of here in a week!"

Finally holding Matthew!

Of course we know from his first surgery that hiccups do happen, so just like with all CHD babies, everyone is taking it one day at a time, always hoping for the best but trying to be ready for whatever may come.

Mimi will head home on Tuesday. Grandpa Hall returns Monday.

Surgery Updates

Will & Matthew, pre-op

Hi All,

Aunt Jen here. Mimi is in Boston with Will, Nikki and Matthew, so I will plan to update this post as I receive news. All times EDT:

Friday, May 13
2:30: Matthew is in pre-op. Will and Nikki are still with him at this time
4:30: Matthew's surgery begins
5:45: Matthew is on bypass
8:00: Surgery went well. Surgeons are wrapping up (closing, etc.), then Matthew will be moved out of OR and will have chest x-ray and other tests necessary after the procedure. Probably will be another hour or so before Will and Nikki can visit with him.
11:00: According to Dr. Baird, Matthew's left ventricle was better developed than they anticipated. They proceeded with the Glenn operation, but said there is hope for a future biventricular repair, which is outstanding news.

Matthew is recovering.

Saturday, May 14
9:00am: Matthew is doing pretty well. He is still intubated this morning, but has started breathing over the vent. The weaning process has begun and hopefully he will be extubated by this evening.
6:00pm: Matthew has been extubated and is doing well. He woke up this afternoon for the first time since surgery and he apparently protested rather loudly. The team gave him some meds to calm him and he's resting comfortably now. Now that he's waking up I have a feeling he'll have an update for himself soon... :)

Matthew's Update From Boston

Hi Friends!

I don't think I've had a chance to talk to you all directly for a couple of months, but I've been spending a lot of time with Mimi and she told me she's been updating everyone. As you know, I'm back in Boston with Mom and Dad, getting ready for my second heart surgery, the first step of the Fontan Procedure. Below is an overview of the issue and the operation, for you really smart folks that like the details. I had the Norwood procedure back in December and now I'm going to have the Bidirectional Glenn procedure this time.

Do I have a story for you!

I was scheduled to have surgery on Monday, but after they made me go to sleep so they could keep me still and get a clear picture of my heart earlier this week, I woke up and have wanted to keep the oxygen ever since. For this reason Doctors Baird and Brietbart decided to move my surgery up to tomorrow.

I heard Dad saying something about Friday the 13th and Mom said that must mean really good luck for me! Plus Aunt Jen told me she and Uncle Ryan intentionally got married on Friday the 13th because they thought it was such a lucky day, so I think this is a great sign.

Dr. Baird told Dad today that I'm in really good shape for this next surgery and they are really excited for a good outcome. Dad told me it's because I've been doing my arm and leg aerobics so much and getting my heart ready!

My Grandpa Hall was planning to be here with us, but Mom's grandma passed away yesterday so he has to be back home with the family. I just found out Mimi has decided to hop on a plane and join us up here for all the festivities. She'll be here tonight and she's going to stay at the hospital with me. It will be just like back home when I get to spend the night with Mimi on the nights Mom and Dad are both working at the hospital!

I think I've told you guys most of the important stuff. You can read more about what the doctors are doing to my heart and why in the information below. Thanks for all your love, thoughts and prayers. I know Aunt Jen and Mimi will keep you updated and I'll write again as soon as I can! XOXOXO!!

Matthew

Children with hypoplastic left heart syndrome have a single effective ventricle supplying blood to the lungs and the body (either from birth or after an initial surgery e.g. Norwood procedure). They are delicately balanced between inadequate blood supply to the lungs (causing cyanosis) and oversupply to the lungs (causing heart failure). In addition, the single ventricle is doing nearly twice the expected amount of work (because it has to pump blood for both lungs and body).

The Fontan is usually done as a two staged repair.
The first stage, also called a Bidirectional Glenn procedure or Hemi-Fontan (see also Kawashima procedure), involves redirecting oxygen-poor blood from the top of the body to the lungs. That is, the pulmonary arteries are disconnected from their existing blood supply (e.g. a shunt created during a Norwood procedure, a patent ductus arteriosus, etc). The superior vena cava (SVC), which carries blood returning from the upper body, is disconnected from the heart and instead redirected into the pulmonary arteries. The inferior vena cava (IVC), which carries blood returning from the lower body, continues to connect to the heart.
At this point, patients are no longer in that delicate balance, and the single ventricle is doing much less work. They usually can grow adequately, and are less fragile. However, they still have marked hypoxia (because of the IVC blood that is not fed into the lungs to be oxygenated). Therefore most patients are referred for another surgery.
The second stage, also called Fontan completion, involves redirecting the blood from the IVC to the lungs as well. At this point, the oxygen-poor blood from upper and lower body flows through the lungs without being pumped (driven only by the pressure that builds up in the veins). This corrects the hypoxia, and leaves the single ventricle responsible only for supplying blood to the body. 

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.

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.

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!

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.

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.

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!