William's Day of Procedures............

To those of you who read this regularly you may notice a different writing style and that is due to the fact that Emilie is not writing this post, it is her wonderful husband doing so……….

Today was William’s day of procedures as he had a scope done of his trachea, esophagus, and GI tract. He also had his esophagus dilated due to the narrowing or “stricture” at the sight his esophagus was originally repaired. The procedure started around 8:30 am and he was brought up to NICU around 10:30 am as he was beginning to wake up from the anesthesia and was complaining quietly as he was wheeled in.

After they got him more or less settled in he began to wake up more and get back to his old self as he managed to remove his own IV causing quite a mess as well as kicking out of his pulse-ox band all while making countless friends on the floor. I have to give him credit that given everything he has gone through already he has to be one of the happiest babies out there and he knows how to use his smile already to win everyone over.

As a result of the procedures it became clear that William will more than likely need to have the aortopexy surgery to help open up his trachea as it was collapsing on itself even while he was calm. He is also going to need to have at least 2 – 3 more dilatations of his esophagus in order to help him as he begins to eat more solid foods. Fortunately these procedures can be done back home while the chance still exists for another return trip out to Boston further down the line.

While William and Emilie were at the hospital, the girls and I went for their first taxi ride to the hospital which was a thrill for them, although it lost out to the ferry and subway ride (we will post about that later with pictures) from yesterday. The girls have been great given the complete state of chaos this trip has essentially been as we have been gone since last Friday and they just keep up just as if this is normal for our family.

We are hopeful that William will be released from the hospital tomorrow, although he did have another blue spell earlier today and they mentioned that may cause them to want to keep him another night as a precaution but we will have to see what ends up happening with that. Ideally we will be packed up and back on the road on Friday but that remains to be seen.

I did want to say too that we have been truly blessed with the support we have received from both our family and friends throughout everything. Those thoughts and well wishes, along with the endless prayers have gotten us through a lot and made what could be a very trying and stressful situation easier to go through.

Until the next post, PEACE OUT…………………………………………………….

Finally in Boston

We made it to Boston! We had a really good trip here; the first night we stayed in Columbus, OH with one of my brothers, and the second night we stayed in NY. Even though we encountered our first Nor'easter; we lucked out because the area the snow hit was farther east than we were at the time and by the time we got there, the roads were perfectly clear. A lot of people in NY and CT are without power though - roughly 3.1 M - so a lot of people are at the same hotel we are...which is nice because there are a lot of kids!

The kids did great on the drive - we stopped about every 2 hours - and thankfully, William loves traveling and slept a lot. Norah and Bella did great - thank goodness for portable DVD players!!

Today was a long day at the hospital. We started at 9 with all inpatient admitting - we saw nurses, an anesthesiologist, and general check in people. That lasted about 2 hours. Then, William had a chest x-ray and a swallow study. He was not a fan of the barium liquid he had to swallow and had to be given it through a syringe to finish the test. The team got to see what they needed to see though, so it was only done once. Then we met with Dr. Jennings (the surgeon and head of the EA/TEF team), Dr. Klein (respiratory doctor), Dr. Manfretti (GI doctor), and a few nurses.

On Wednesday, William will be admitted to the hospital and will go under anesthesia for a bronchoscopy (a scope of his trachea, larynx, and bronchi), a endoscopy (a scope of his esophagus), and a duodenoscopy(a scope of his GI tract).

William has a stricture where the initial repair was operated on, which is scar tissue. They will do a dilation on Wednesday while William is under anesthesia. Over the next few weeks, he will get 2-3 more dilations (In STL) so the area doesn't close up immediately.

There was one other area where the doctor's saw a narrowing - the sphincter between his stomach and his esophagus. This is typically slightly narrow, but his looked unusually narrow so they are going to take a closer look. They said it could be because of his anatomy or because of his reflux problems.

William will stay overnight in the ICU after surgery as a general precaution (thankfully, I get to stay in his room). Barring any complications, William will be released on Thursday.

Thank you for all the continued prayers, we appreciate them. We'll let everyone know how Wednesday goes.

Love, Emilie

(I will upload Halloween pics later!)

Boston Bound

Tomorrow we leave for Boston so tonight is a rush to get everything washed and packed. We are nervous and excited to meet the doctors and for William to have the studies completed. I am praying for answers to some of the problems he still has and hope there are safe solutions for him!


We have appointments set up for Monday and Wednesday - on Monday he has a swallow study and we'll meet with the team of doctors. On Wednesday he will be anaesthetised and have the bronchoscopy.


We're going to try to make the trip a small vacation for the girls too - so they are excited rather than nervous now...which has helped a lot!


Thank you for all the prayers, like everything else medically with William we're anticipating what we know is possible but preparing ourselves for the unknown.


Love, Emilie

6 Months Already!

Our sweet William turned 6 months old on October 18 - he's getting so big! He's cooing and trying to talk - even more so than his sisters did at this age :) I think he might speak before they did just to keep up with them. He has rolled over multiple times - from his belly to his back - but that is a big accomplishment for him since he doesn't get a lot of tummy time. (Because of his severe reflux, it bothers him to be on his back and tummy for a long time) Ellen, his OT, says he is doing really well though - he's meeting all milestones for his age! This is also really great because he isn't expected to catch-up until he is 1 year old - yea William!!




When we met with William's surgeon, he let us know that since William hasn't used his g-button in almost a month; he can remove it! He wants to leave it in just in case William has surgery because that is how he will eat, but once he is completely orally fed for 1 month - it will come out :)

Sleeping is something William struggles with, so hopefully after we meet with the doctor's in Boston, we'll have a better plan of action...or we'll continue to drink a lot of coffee! We are so blessed with our children and love seeing God shine through in them. He has given us 3 amazing gifts and our lives will never be the same.

Pumpkin Patch 2011

We went to the Pumpkin Patch we've been going to since Norah was a baby this month. It's so much fun and they have a lot of great kids things to do. Norah and Bella had a lot of fun picking out pumpkins and stickers to decorate them :)

Me with our "little monster"

Scarecrow Bella

Scarecrow Norah
Of course - scarecrow William :)
It's very hard to get three little ones to smile when there is so much to look at!

Isabella turns 3!!

I can't believe our Isabella is 3 already! Time has flown too fast and she is growing up so quickly. I love seeing her grow up but it makes me sad at the same time because I love her so much!! (I do feel the same way about Norah and William!)

We celebrated Isabella's birthday in our family style - twice :) She had a birthday party with the WHOLE family at the beginning of October outside at Bee Tree Park, which was fantastic! We couldn't have asked for better weather and she had so much fun. Her cousins came and she had aunts, uncles, and grandparents there. We made caramel apples and played on the playground....everything a 3 year old loves!

We celebrated just the 5 of us on her birthday...to quote Bella : "We're going to my birthday party at Red Robin!" which is her favorite restaurant (because of the balloons!). She was so funny - she looked so forward to the waiters singing to her and bringing her ice cream. After they sang and left, she looked at me with those huge brown eyes and said " They didn't sing Happy Birthday to me...will you sing to me?" I said they did sing and you're eating ice cream :) She let me know they didn't sing "Happy Birthday to You, Happy Birthday to You..." so we sang to her - Mommy, Daddy, and Norah (William cooed) and she lit up! She makes my heart swell with happiness!!

Here are a few pictures of our sweet Bella.

Isabella Rose - on her birthday three years ago

Bella opening her favorite birthday present from us - new shoes!!

Sweet smiling birthday girl!

Norah helping Bella open presents
Eating her birthday lunch!

Postponed...

Well, our trip to Boston has been postponed until October 31. The reason his appointment was rescheduled is that originally the surgeons in Boston were going to do surgery immediately following the bronchoscopy. We wanted to have an evaluation done instead which would include the bronchoscopy but not have surgery immediately following. Since there is a backlog of surgeries, they needed to give William's surgical spot to someone who needed surgery and we'll have an evaluation on November 1 instead.

We are trying to do as much research and have as much information at hand before our trip. We were able to find, through a long series of doctors and surgeons, a cardiothorasic surgeon at STL Children's who can do the aortopexy. The aortopexy is a surgery that will take the aorta and pull it towards the sternum and attach it there. This will relieve some of the symptoms of tracheomalacia William has. Tracheomalacia will not be corrected with this surgery, the only way it corrects is over time and hopefully by the time William is 5 or 6, his trachea will have hardened and be able to stay open by itself. The aortopexy won't be reversed and should not cause any problems as he grows.

The other surgeries the surgeons in Boston have told us about are if there is a recurrent fistula (the connection between the esophagus and trachea) and if he has a laryngeal cleft. We met with the pediatric surgeon who did both of William's surgeries at St. Johns and he is able to correct the recurrent fistula (it's unlikely William has one as he has no symptoms of this) and his ENT can do the laryngeal cleft surgery if needed.

We're eager to meet the surgeons in Boston so the tests can be completed and we can make a decision for William. We would prefer not to have him go through another surgery, but if it's the best thing for him and will relieve his blue spells and breathing problems, we'll do whatever is necessary. We're praying for God's guidance that he will help us make the right decision as to if William should have surgery and if so, who should do surgery.

Thank you to our families and friends for all their support and endless conversations to help us make a decision! We are so incredibly blessed to have such an extensive support system.

We'll keep everyone updated. (As a side note - I have some more "fun" blogs to put up and will try to do that this weekend!)

Love, Emilie