Sisters by Heart: New Moms Start Here

Sisters by Heart: New Moms Start Here: Welcome to the heart community! Your baby has a severe heart defect . We know you’ve recently heard those words. We know you’re scared,...

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. 

Back In Boston

Here is the most handsome grandson anyone could have!! Well, he has a couple of cousins who are pretty cute too! ;-)

He is also so very precious!! His smile lights up the entire room!

In the pre-dawn hours yesterday, Matthew, along with his mom and dad, boarded a plane and flew to Boston. According to Will, he was a huge flirt on the airplane, no doubt winning the hearts of total strangers!!

Quick Update

Early this morning, Will and Nikki took this picture of our sweetheart, wearing his Bee Happy outfit (on the 'back side', it says "Life Is Good!').

Will just called to tell us that the sedated MRI is complete and Matthew did just fine. A cath is not necessary because the doctors were able to see what they need to see on the MRI. Dr. Breitbart, Matthew's cardiologist at Children's Hospital in Boston, is very optimistic that he will have a very successful Glenn procedure.

All of this is very good news!!

Our Journey Continues-

This is Dottie, Matthew's Mimi. We promised to keep you up to date on news about Matthew as it became available. That's the reason for this post. I also want to share some recent photos!!

Will and Nikki spoke to the folks at Children's Hospital in Boston and now have the schedule for the next trip...

Fat and Happy at Mardi Gras!

Mimi pimped my crib for Mardi Gras

Hi Friends! I'm writing less often because... well who wants to keep hearing about how blissfully happy I am these days! I keep getting fatter and happier.

I was starting to worry about my weight and, since I know Mom would never tell me the truth about it (she thinks I'm perfect), I asked Mimi when I stayed with her last week. I asked her if she thought I should go on a diet. Mimi said this is the only time in my life when chubbiness will be "adorable" and I should really embrace it while I can.

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.