Dinner at Prego & Opera at the University of Houston

Yesterday, Jesse and I found inexpensive tickets to see an opera at the University of Houston, so we chose to make a date night out of it.  For dinner, we chose an Italian Restaurant called Prego.  

You can find the website here: https://www.prego-houston.com/

It was so good and we will definitely be putting it on our repeat list.  The service was excellent and the food was delicious.  It reminded us of being in Italy again.  I tried to take photos of all of our food, but completely forgot about dessert - sorry!  It was chocolate souffle - yummy!

Complimentary Bread Service with Olive Oil

Averna Manhattan Knob Creek BourbonAverna Amaro/Angostura Bitters/Citrus Twist 

Calamari Fritto - Fried calamari with roasted tomato sauce

Zucca Risotto - Carmelized butternut squash, jumbo gulf shrimp, housemade pancetta, scallions

After dinner, it was time for the opera.  We saw The Marriage of Figaro and had great seats on the 2nd row.  All of the performers were college students and they did an excellent job with the performance.  If you are ever in Houston and looking for low-cost entertainment, I would highly recommend checking to see if there are any shows playing.  Photos weren't allowed during the show, but I was able to get a few photos before it started.

Here is the website for Moores Opera Center:  https://uh.edu/kgmca/music/opera/seasons/2019-2020/index

Mural in the lobby

Another angle of the mural

Updates on Boys & Houston Car Show

Alex started at his new school in Louisiana on Tuesday.  He was nervous, but seems to be doing okay from our conversations with him.  We've been talking via FaceTime nightly to the boys. It's so good to hear their voices and see their faces.  We are missing them for sure!

Alex ready for his 1st day

Playing dodgeball at PE

Eating lunch - he's so excited to have his photo taken :)

Alex's with his teachers at his new school

Also on Tuesday, Jesse and I met with the neonatologist to learn more about what to expect on the day of Jude's birth.  We also took a tour of the CVICU to see what his room will look like.  It made it all seem so much more real.


Yesterday, Jesse took a day trip to Dallas to accept an award as Physician of the Year of his entire ER group!  We are so proud of him!

When I picked him up at Hobby Airport yesterday afternoon, they had a display set up to advertise for the upcoming Houston Livestock Show and Rodeo that I thought looked pretty neat.

Today, Jesse and I went to the Houston Auto Show just to look at all the new cars.  They had over 800 cars there!  Here were a few of our faves:

Ford GT

Ford Expedition

Yukon

Jaguar - so cute and comfy, but not gonna hold our family of 5 :)

Buick Enclave Avenir

Lincoln Navigator

Chrysler Pacifica

Lamborghini with a custom paint job

Lamborghini

We thought of Alex and how much he would have loved the sports cars.

Tomorrow we have another doctor appointment.  Hoping for good reports to make it one more week toward seeing Jude!

Houston, We Have Arrived

Yesterday was moving day, and we have made it here safely.  Thank you to everyone for the kind words, thoughts, prayers and help along the way so far.

After packing for two days and hoping we had everything we might need, here's what our house looked like:

Our poor car was so loaded down 😊

Also, we took a few photos in Jude's room before we left.  We put the finishing touches on it just a few days ago, so now it's ready for him to come home and enjoy.

And here's our two big boys ready for their adventure to Louisiana:

They were packed in pretty tightly 😅We met my dad and stepmom about halfway to Houston, where we gave them the boys and their things to go to Louisiana.  Saying goodbye to them was hard.  We know they will be taken good care of while we are away, but it still is so sad to have to leave them for what is an unknown period of time.  We are definitely looking forward to their first visit!

A few photos of the boys after we left them:

Josiah got donuts on the way home, so he was happy :)

Jesse and I continued our journey down to Houston to check into what will be our home for the next few weeks.  We rented a VRBO apartment not too far from the hospital, and it's absolutely perfect for what we need.

Living area with a fold out sofa for when the boys come to visit

 

Our bedroom

Kitchen 

View from our patio - including a very peaceful fountain

Patio

After checking in and getting settled, we decided to have a "we made it to Houston without going into labor early" dinner at The Original Ninfa's on Navigation.

Shrimp Diablo

Sopapillas - the best I've ever had

I had a small cheat from my diet by eating a sopapilla, but it was soooo good.

All in all, we had a good day and made it safely.  Hopefully, for the next couple of weeks we can rest, enjoy each other's company, go to our doctor appointments, and see a few sights in Houston.

We did get some cute photos of the boys to close out the evening letting us know they made it to Louisiana.  They got to have a late Christmas with Grampie and Nana Tish, so they were excited about that!

35 Week Update

Just a quick update today.  We just returned from MFM physician here in Plano where I had an ultrasound to get an update on Jude's growth.  He seems to be doing well (non-heart wise) and growing as he should.  Right now his estimated weight is 5lb, 11 oz, with his head measuring larger and legs measuring smaller than average.  Here are a couple of photos:

He's smirking a little :) The umbilical cord was in front of his face.

We are a little biased, but we think he's cute and look forward to meeting him next month.  For now, we are packing up and preparing for our transition to Houston next week.  Thank you everyone for the prayers, thoughts, and kind words!

How to "fix" Jude

So far on our blog journey we have discussed our diagnosis, where we plan to deliver, and how we came to Texas Children's, but we haven't said much about how doctors plan to treat Jude's defect.  In today's post, I'd like to discuss what might be in Jude's future as far as treatment is concerned. 

First, let's talk about the two broad categories of "fixes" for congenital heart disease.  I place the word fix in quotes because some of the surgeries done on children with congenital heart disease don't actually fix the defect but rather make it such that children can live with the defect.  In fact, in congenital heart disease treatment there are two broad categories of treatment -- anatomic repair and palliative treatment.

Anatomic repair means surgery truly fixes the defect.  The surgery corrects the problem and after surgery you are left with a heart that essentially looks and works like a normal heart.  These children generally live normal and healthy lives with little to no effect on their daily activities.

Palliative treatment means surgery can NOT be performed to make the heart normal.  In a palliative approach, the goal is to make changes to the heart and blood circulation such that the child can live as normal a life as possible.

If you had the choice between anatomic repair and palliative repair you would generally always prefer anatomic repair because it leads to better life quality, less complications, and less treatment down the road.

At our first cardiology appointment in Dallas we were told Jude would not be candidate for a anatomic repair given the complexity of his diagnosis.  In fact, this is one of the reasons we were referred to Texas Children's in Houston because our cardiologist in Dallas was hopeful the surgeons in Houston might be able to offer a treatment that was not available in Dallas. 

At our first visit in Houston the cardiologist confirmed she did not believe Jude would be a candidate for anatomic repair.  Despite Jude having a 4 chamber heart, both centers recommended we treat Jude with the Fontan Pathway/Single Ventricle Pathway.

Babies treated on the Fontan Pathway classically have been born with hypoplastic left heart syndrome -- Jude does not have this.  However, over the years the Fontan pathway has been used to treat children with other diagnosis that are too complicated for anatomic repair. 

The traditional Fontan Pathway involves 3 surgeries:
1. Norwood Operation
2. Bidirectional Glenn Shunt
3. Fontan Operation

Jude WILL NOT require a Norwood Operation because he has a 4 chamber heart with an aorta and pulmonary artery -- Norwood is required for babies with hypoplastic left heart syndrome.   

Therefore, on the Fontan pathway Jude will need the Glenn Shunt and the Fontan Operation.  Generally the Glenn Shunt is performed around 6 months of age and the Fontan Operation is performed anytime from 2-6 years of age.  Both are open heart surgeries.  I don't plan to discuss how the surgeries are done here -- there is a large amount of information and graphics on the internet for both if you'd like to learn more about them.

The big unknown for Jude will be how much blood flow he has to his lungs after birth due to his pulmonary stenosis.  Complicating this will be his large VSD.  Therefore, the real question after Jude is born is how low will his oxygen saturation be?  If we can keep his oxygen level above 75% (normal would be greater than 90%) he may not require any procedure after birth.  However, the doctors in Houston are worried he may not get enough blood flow to his lungs and as such would require a procedure to increase blood flow shortly after birth. 

As such, Jude's treatment plan looks like this:
1. BT Shunt or Ductus Arteriosus Stent (possible) [Birth-2 Weeks]
2. Bidirectional Glenn Shunt [6 months]
3. Fontan Operation   [2 years - 6 years]

We are all hoping we don't need surgery at birth.  Babies who need surgery at birth generally spend much longer in the hospital and have much higher rates of complications.  The Glenn and Fontan surgeries are much lower risk surgeries that generally only require several week hospital stays.

Finally, we should mention there is a small sliver of hope that Jude could get an anatomic repair.  At our cardiology appointment on December 23 our cardiologist informed us Jude's case had been presented in cardiology conference.  The chief of cardiothoracic surgery told everyone he would not totally exclude an anatomic repair but that he would be unable to know if Jude would qualify without "taking a look inside."  So, more wait and see.  For now, we are planning on Fontan and hoping for more options.

For those who want to know more about Fontan treatment and outcomes following Fontan there is a ton of information on the internet.  Keep in mind Fontan was developed in the 1970s and the technique has changed and results have gotten much better with time.  I'm not going to spend the time to go through all the steps and outcomes of Fontan here because there are already great resources on the internet that cover this.  I've listed several sites below that are good resources -- keep in mind all these sites are going to show hearts with hypoplastic left ventricles and hearts that have had Norwood surgery but Jude has neither so the pictures are not perfect.

BT Shunt:
https://www.aboutkidshealth.ca/article?contentid=1657&language=english

Glenn Surgery:
https://kidshealth.org/en/parents/glenn.html

Fontan Surgery:
https://kidshealth.org/en/parents/fontan.html
https://www.cincinnatichildrens.org/health/s/sv

So long until next time!

Hermann Park Train and Houston Zoo Lights

One of the goals of this blog is to also help others that may be in a similar situation as us (not from the Houston area, but looking at potentially temporarily relocated for their heart baby).  So in addition to updates on Baby Jude and his health, we also want to include real-life events and things we experience on our journeys to Houston.

At our last visit on December 23, we chose to spend an extra night in Houston, hoping to have time after our appointments to take the boys to do something fun.  The last two times we had gone for appointments it was a quick turnaround there and back, which isn't much fun for our 10 and 4 year olds.

One activity they had been asking to do was to take the train around Hermann Park.  You can use this link for the official train information.  We were able to find a parking spot on the outskirts of Hermann Park, but then had some confusion about where to go to buy tickets for the train.  We could see the tracks, but didn't know the origin point.  After following the Reflecting Pool and walking around McGovern Lake, we found the Conservancy Gift Shop.  In the map below, it's the two black dots on the right side of McGovern Lake.

Here's a photo of what the train looks like during the day.  However, we were riding right at dusk, so it was a little harder to see.  They did have the train decorated with lights for Christmas though.

Photo borrowed from Hermann Park website

We had to wait around 15 minutes for the train to make it back to the station, then it was our turn to ride.  The ride around the park takes around 20 minutes and the kids really enjoyed it.

Our next stop, which just happened to be next door, was the Houston Zoo to see the Christmas Lights.  The zoo had opened while we were waiting in line for the train and there were a LOT of people going in.  Crowds are not something we really love to deal with, so we told the boys we would see what it looked like when we got off the train.  The line had gone away by the time we got off, so we headed over to the zoo.

Admission is a little pricey at $35 per person for anyone over the age of 2, but the quality of the lighting displays was superb.

Also, one little tip.  In the restroom area they had several portable toilets lined up.  Not realizing that wasn't the actual bathroom, that's where I stopped.  Jas told me after there are real bathrooms further down the line (but as usual, the ladies had a long line, hence the portable toilets).  So, if you need to go and you want a real bathroom, just keep walking past the portable toilets.

Holiday Grove

 This area had music playing and my two love to dance.  I managed to get a short video when they didn't know I was looking. ☺

I didn't take any photos of dinner, but we did stop to eat at the Cypress Circle Cafe.  The food was surprisingly pretty good for food served at the zoo.  They really strive to be green and it was easy for me to find items that fit into my diet for my gestational diabetes.  There were also several food carts open selling drinks (including St. Arnold's beer) and snacks.  The boys picked up some cotton candy (while I internally drooled - I have a serious sweet tooth and it is hard to abstain!).

Ice Dragon

An animatronic dragon that was really beautiful and neat to see.  Josiah was a little scared, so he kept his distance.

Coca Cola Plaza

Alex was a little nervous in this section.  For whatever reason he was convinced the polar bear was going to move when he stood next to it.  😂

Enchanted Forest - my favorite!

They really outdid themselves with the Enchanted Forest section.  This photo truly does not do it justice.  The lights were everywhere and completely immersive and it felt like we were transported to another world.  Almost like visiting Willy Wonka with the large plants and all the colors. Beautiful!

At the end, we stopped at the gift shop to pick up an ornament (it's our family souvenir that we buy anytime we visit somewhere).  It took us around 1.5 hours to see the lights and eat a quick dinner.  I was getting pretty tired from the walking at this point, too.  We all really enjoyed seeing the lights and it put us in the holiday spirit.  The boys were disappointed that they didn't get to see any of the animals, but the Houston Zoo during the day is on their wish list now.

Why We Chose Texas Children's Houston

We have had many people ask why are you going to Houston? Why not just deliver here in Dallas? Here's a little background:

On October 9, after an initial diagnosis from our OB in McKinney and the Maternal Fetal Medicine physician in Plano, we were referred to the cardiologist at Children's in downtown Dallas.  They performed an echo (ultrasound of the heart) on Jude that took about an hour to complete.  At this point we knew there was something wrong with Jude's heart, but no one could tell us what that was.  After the echo, the cardiologist sat us down and began to describe his rare condition of criss-cross heart.  You can read more about Jude's diagnosis here:  Jude's Diagnosis

After giving us the basics, she told us she recommended a second opinion at Texas Children's in Houston and gave us the name of the cardiologist she wanted us to see.  She was very honest and forthright in that criss-cross heart is something she had never seen in utero before, but had seen in babies after they were born.  She also suggested we go home and research the statistics between the different hospitals as far as cases seen and successes.

A few weeks later, on October 31, we had another echo and meeting with the cardiologist at Texas Children's in Houston.  She confirmed the diagnosis given to us by Children's in Dallas (and gave props to the Dallas cardiologist for making the correct diagnosis since it's so rare).  Again, she was very honest and forthright, letting us know that either hospital was well-rated and would be good for Jude.  It was up to us to decide where we wanted him to be born.  Our nurse coordinator was able to give us a tour of the Neonatal Cardiac ICU (CVICU) and able to answer all of our questions.  In the end, we had to base our decision on facts, but also where we felt the most peace.  Here were some items we took into consideration when making our decision:

1. Not gonna lie, this was a big one.  Texas Children's in Houston is ranked as the #1 Cardiac Hospital in the country for kids.  They see about double the cases that are here in Dallas.  Their surgery outcomes are some of the best in the nation.  And in the words of our cardiologist, "We are a factory, and what you want right now is a factory."  Meaning, they see so much of so many things, with Jude he won't be an anomaly or unique.  They are performing all sorts of innovative and cutting-edge surgeries and procedures here.  The number of surgeries performed at Texas Children's were double what Children's in Dallas is doing.  And their outcomes were slightly better than the ones in Dallas, causing us to lean toward them from a factual standpoint.

2.  At Texas Children's, Jude and I will be able to be at the same hospital.  He will be born at one tower, then whisked over to the CVICU after birth in the other tower.  Jas will be able to go with Jude immediately and later that day (once I'm awake from surgery and can physically make it over), I'll be able to visit him.  In Dallas, we would have to be at two separate hospitals and it would be the next day or later before I would get to be with him.  Also, making it hard on Jas to be with both myself and Jude at the same time.

3.  Texas Children's is in the middle of the Texas Medical Center in Houston.  It's a collection of over 20 hospitals with thousands of employees, the largest medical complex in the world.  We felt comforted knowing that if Jude is born and has other issues we aren't aware of, that someone nearby would be able to offer him the support and resources needed.

4. Finally, we just felt a peace about delivering in Houston.  It's definitely not the easier solution, but we want the best care for Jude and felt like this is where we needed to be to get that.