No More Speech Therapy!

 We had some exciting news this morning - no more speech therapy for Jude! His therapist was so pleased with his progress that she decided to complete his reassessment a few months early.  Jude met all his goals and is now actually ahead of his age group, speech-wise.  I'm glad to not have to drive twice a week to lessons now, but super thankful to Monkey Mouths for helping Jude these last 9 months. Here's a photo of Jude with his therapist, Ms. Lupe.  He loved spending time with her and really enjoyed his therapy sessions.

One Year Post-Op Visit

 We are headed home from Houston for the first time in a year (it’s a huge relief to be able to say that). Jude had his one year post-op visit today to check on his heart and make sure it’s working like it should. Overall, it seems like his heart is doing well. The only possible cause for concern is he does have some collaterals that have grown. This is his body’s way of responding to the lower amount of oxygen he receives. So it grows collaterals to try to get more oxygen to the lungs. The problem is this can cause the blood from the collaterals not to get fully oxygenated and causes his oxygen saturations to go below the target level. For now it’s just something to monitor by checking his oxygen levels regularly, which we already do at home. Also, the collaterals will have to be corrected by adding coils via a cath procedure before his next open heart surgery.

We were also told to prepare for his next open heart surgery to be next spring. He will be 3 years old and that is typically the beginning window for when the Fontan surgery takes place. It was earlier than we were initially expecting, so are a bit bummed about him going through a major surgery again so soon. But we definitely want to do whatever will give him the best long term results. 

We will return to Houston again in 6 months to check in with his cardiologist and get started on the steps to be taken before his next surgery.

Positives from today: Jude’s stranger anxiety is soooo much better. Although he still didn’t love getting an echo, I didn’t have to hold him down for 45 minutes like we used to have to do. He just asked “All done?” about 25 times. 😂 He is growing well and sooo thankful we don’t have to worry about counting all the calories and fight to make sure he’s getting enough. Jesse and I always say that any day we get to leave the hospital is a good day, so…it’s a good day!

Jude does NOT like stickers - these were for his EKG

Jude does love keys!! These were a hug help in getting through his appointment.

Celebrating Jude's 2nd Birthday

 Two years ago right around this time in the evening, we were getting ready to welcome Jude Killian to the world.  It had been one of the longest days of our lives. Waiting all day for surgery to begin, not knowing what lay ahead, but knowing that our lives were never going to be the same. 

Fast forward two years and we have a little boy who loves to play outside, make messes, and is adamantly independent when it comes to feeding himself. He's survived bacterial meningitis, blood clots, 2 heart caths, and an open heart surgery.  Jude's life will always follow a little different path than a child with a healthy heart, but we are so thankful for each day that he is healthy and all that he is able to do.

Life for Jude has been really good since his surgery.  We don't have to go to the doctors nearly as much, he's growing and he only has to take aspirin daily.  He does have some speech delays, so he's been doing speech therapy since November, which he loves and it's helping him tremendously.

For his 2nd birthday, we chose to celebrate in Broken Bow, Oklahoma. We rented a big cabin so the whole family could join us and had a "Oh Twoodles" party.  It was a beautiful weekend to spend outside and everyone had a great time together!

Jude's echos in Dallas have been rescheduled twice due to staffing shortages and COVID at the hospital. Our next step plan for now is to go back to Houston for a one year post-surgery check up in April.

Let the Adventures Begin!

We've been quiet on the blog for the last few months, but that's a good thing! It means for us life has been happening with no bad surprises and Jude is healing from his surgery.  It's been 3 months and 2 days since his Glenn surgery and he has come so far! Some positive milestones over the last 3 months include:

• Visiting the capital of Texas - Austin
• Jude eating at his first outdoor restaurant (we still haven't done indoors with him yet)
• Visiting the home of Blue Bell Ice Cream in Brenham, TX
• Jude had his first zoo visit at the Houston Zoo
• Josiah finished Kindergarten and Alex finished 5th Grade - yay for the summer!
• Jesse and I got to have our first date night since Jude was born
• Blackberry picking at a local farm
• Taking a trip to the beach at Galveston Island - family portraits, sandcastle lessons, exploring the tall ship Elissa
• Celebrated our 15th wedding anniversary
• Our first family visit here in Texas that didn't revolve around a doctor appointment or surgery, so we just got to hang out and enjoy each other's company
• Alex took Volleyball lessons
• Toured the Texas Sculpture Park in Frisco, TX
• Josiah lost his 2nd tooth
• Jude is walking!
• Jude made it to the 20th percentile in his weight and is gaining and growing like he should since his heart isn't having to work as hard
• Meeting friends for a walk at the park (Jude's first playdate!)

Yesterday we embarked on what we be our longest traveling adventure so far...a road trip to Cape Cod!

We'll be posting all about here when we return, but if you want to follow along you can join us at Instagram at #ourheartadventures or on Facebook @ourheartadventures.

Post-Op Day 5: All Good Reports So Far

 

Today was a good day! Jude had an echo and X-ray this morning that all came back as expected. No issues or fluid build up, which is great! The doctors wanted to monitor him for one more day, then as long as no new issues and X-ray tomorrow looks good, hopefully he will be discharged tomorrow. After our experience last time, we’ve told ourselves not to get excited until we have discharge papers in hand. 

Also, being in the hospital and around people has helped a lot with stranger anxiety. He still doesn’t love them, but at least he doesn’t scream every time someone walks in the room. 

He’s moving around really well, climbing on everything and crawling everywhere. The most important thing for us to remember is we can’t pick him up under the arms for the next six weeks. Think scoop like a newborn. Otherwise he is self-restricting, so whatever he is comfortable with doing. Here’s a little video from his walk in the hall today. 

Post-Op Day 4: No more lines!

 

We had another good day today - yay! After bloodwork and x-ray it was decided Jude's chest tube could be removed.  They gave him so extra pain medicine to help (the removal is painful, but quick).  After that he was able to take off the continuous telemetry, so all those wires went away as well.  His IV infiltrated when they flushed it, so it was removed.  His hand was a little puffy for a while, but is all better now.  He had physical therapy, and they gave him walker to use up and down the hall.  He was able to move around much better without the chest tube and he crawled around, getting into everything.  He had another x-ray and an EKG this afternoon.

Jesse is spending the night with him tonight, and hopefully they will both rest well.  Jude is normally a good sleeper at night and usually still takes two naps during the day.  At the hospital daytime naps get blown out of the water and he wakes up at night with all the meds, IVs, and vital checks.  Hence the dark circles under his eyes.  Also, he's nosy, so since we are in the room with him, he wants to constantly check and see where we are. 😏

The plan for tomorrow is Bloodwork (again, ugh - he has to get poked every morning 😢thankfully, they've been able to draw pretty easily, but he hates being held down), X-ray, Echo.  Hopefully only a few more days in the hospital as long as everything continues to look good. Then we will stay in Houston until our surgical follow-up which should be a week after discharge.

We brought a Roku stick with us so we can get Disney+ and he loves to watch Mickey Mouse Clubhouse :) Oh, also his cardiologist stopped by just to say hello and see how he was doing.  The floor has a rotating cardiologist, so this was just a courtesy visit for Jude.  She is so wonderful, and we are so thankful that our Dallas cardiologist recommended us to her. 

Thank you everyone for your kind words.  I don't get a chance to reply to everyone, but please know we appreciate everyone's words and kindness!

Post-Op Day 3: Moved to Step-Down

 We had a good day here at the hospital. Jude got to move to the step-down floor! He still has his chest tube, so getting it removed is his next big hurdle. He'll continue to have vitals taken every 4 hours, he has IV Lasix every 12 hours to help with fluid retention, and pain meds every 6 hours (the chest tube is painful, but hopefully once that gets pulled his pain will ease). Every morning at 4 am (yay! not) his has a chest X-ray, then blood draw after that.  So with all of those things going on, rest is not something he has gotten a whole lot of.  

He is eating solids foods again! He loves bananas so he has had lots of those and then some veggies tonight.  He's eating like a champ. Also, he had his bandages removed this morning, but his wound is healing nicely.

He was also able to wear clothes today! 💙

Physical Therapy stopped by today with a mat for him to sit and move around on.  The sooner he is able to get around the more it helps with clearing his congestion.

After we moved to his new room, we put the mat next to the couch so he would have something to pull up on and he enjoyed that.  He was moving around pretty well, but it tires him out easily right now. His energy will get better with time and definitely when the chest tube is gone and not in the way any more.

Yay for progress and good days! We were able to do in 3 days what it took him 3 weeks to get to in his first stay, so we are all excited about that. He loves talking to his brothers on FaceTime, and Josiah was so excited to tell us he rode his bike without training wheels for the first time! 😀We all miss being with Alex and Josiah and look forward to seeing them again, hopefully soon.  

Post-Op Day 2: ICU Continues

 Quick update for the evening: Jude continues to do well! He had the following removed today:

• Central line 
• Pacer wires
• Monitor for brain oxygen levels
• Oxygen

All great things and he's ready to move from the ICU to the regular floor, but due to timing and availability they chose to keep him on the ICU floor for one more night. He was having some pain this morning, but he was able to get some meds that helped him.  He was eating well today.  He still has his chest tube in and is getting diuretics to help with fluid retention.  That will be one of the last things to be removed, but it is still producing more fluid than they would like before it can come out.

This afternoon he was sitting up on his own, talking to us, and still watching the Zoo channel. We FaceTimed his brothers several times today and he was telling them a few things too. 😜

Jesse is spending the night with him tonight, so hopefully they will both get some sleep and be ready to continue good things tomorrow!

Post-op Day 1

 Good morning! Just wanted to do a quick update on Jude. He is doing really well meeting all the goals the so far.  Since surgery he has had the following removed:

• Breathing tube
• Central line in neck
• Catheter
• Temperature probes
• Arterial Line
• Weaned off his heart medicine

Every time something else gets taken off we have a small celebration in our room :) The hope is that he will be able to move to step down in the next day or two.  He most likely will go to step down with his chest tube in since he is still having some drainage, but that is normal.  As far as pain, they have done a great job of keeping his meds going.  We did have one time last night where he started to be in pain, but they gave him some extra, and it did the trick.  He loves the Zoo channel they have here and it seems to calm him down.  

I got to hold him last night and we both enjoyed snuggling.

I spent the night with him last night, but Jesse just arrived and is getting his snuggles in now. (Apparently they both like the Zoo channel)

Yesterday went much better than I anticipated.  Our nurse yesterday was the same one we had during the worst day of Jude's stay last time (not her fault, he was just really sick during that time).  So we were so thankful that instead of adding lots of things, she got to take lots of things off. We even all had a good laugh about it. The OT and PT services came by and had him sit up which was a lot of effort at first, but he is doing better with it by himself already.  

Thank you so much to everyone for their kind words, prayers, food gift cards and love.  We truly appreciate you all!

Pre-Op Day

We just returned to the apartment across the street from the hospital after a morning of tests and meetings.  So far all results have turned out well!  

This is Jude before we went to the room.  He knows when we've entered the hospital and was already letting me know he didn't want to be there.

Here's a rundown of what Jude had to do in pre-op:

• Vitals taken (weight, height, blood pressure, oxygen saturations, temp, respiratory rate)
• Covid Test (he loved that 😏)
• MRSA Swab
• Urine sample via a bag he had to wear in his diaper
• X-rays
• Bloodwork (we had a great phlebotomist who got it on the first try!)
• Met with anesthesia to clear for tomorrow
• Met with social worker
• Met with child life specialist
• Met with his surgeon for tomorrow (Jude was on a talking streak at this point and had several things he was telling him 😆)
• His cardiologist came by just to say hi (This is the one who broke her arm badly last year and we haven't seen her in a while, so it was so great to see her again. She loves her patients so much and is so wonderful.)
• Met with research to sign agreements for Jude to participate in some possible research 
• Signed our consents for surgery tomorrow

In total it took about 5 hours for everything with lots of waiting in between.  Starting out, Jude was really upset about all the poking, people, etc. but he had chilled a lot by the end, so hopefully that will help him for tomorrow morning when we go in.

Before and after photos

All in all, it went much smoother than I was anticipating.  It looks like we are set up and ready to go for tomorrow. Poor little guy, he was tuckered out after everything and finally took a nap right before we were released. 

Welcome to Holland

 

I first came across this essay last year in a book titled Maybe You Should Talk to Someone by Lori Gottlieb.  It resonated so much with what I was feeling at the time (and still feel) that I have pondered over the words many times.  Emily Kingsley wrote this in 1987 about her experience as a mom of a child with down syndrome, but it can apply in so many cases (in the book a woman who had terminal cancer identified with the passage).  For me, it caused a complete mind-shift.  I could either sit and bemoan the fact I was no longer going to Italy or I could embrace our new life in Holland.  Yesterday's visit to Texas Tulips was a tangible reminder that our family now resides in Holland, and while it's not Italy, it is beautiful in its own right. I'm sharing it here because maybe it will help someone else like it's helped me.

Welcome to Holland

by Emily Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." 

But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. 

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. 

c1987 by Emily Perl Kingsley. All rights reserved.

Cardiology Check-Up in Houston

 We returned from Houston yesterday for Jude's check-up with his cardiologist.  Since his regular cardiologist is still out on medical leave, we were assigned a new, temporary one.  After a series of procedures including an echo, x-ray, EKG, and all his vital checks - all of which he loves (please note the sarcasm here), we had the fastest doctor meeting we have had yet (it lasted 5 minutes tops). The doctor said everything looked stable (which is good), except for maybe a new rhythm on Jude's EKG (possibly not good).  Which meant Jude would need to be hooked up to a 24 hour EKG (called a Holter) and we have to return in a few weeks (the week before his scheduled surgery date) to have a repeat EKG and make sure there isn't a rhythm issue.  

This photo was taken mid-appointment - Jude knows how to turn on and off the waterworks 😏

Thankfully, the Holter is something we could do at home and mail back, so we didn't have to spend another night in Houston (yay!).  Also, we were pleased to be able to go home and no needs to move his surgery up due to emergent issues. Anytime we get to leave an appointment and go home is a celebratory day. 

This photo was taken this morning right before we took off his Holter.  Surprisingly, it didn't seem to bother him as much as I thought it would.  We kept his onesie and pants on all through the day and night and he never messed with the wires.  You can't see it below his leg, but there's a little box at the bottom that keeps up with all the inputs.  We just tucked that part in his pants, so it looked like Jude had a little extra junk in his trunk for the last 24 hours 😂. This procedure is something Jude will have to do many times throughout his life.  Because of his heart's anatomy, it is important to monitor his heart rhythms and head-off any issues.  Hopefully, the anomaly that popped up yesterday on the EKG was just a fluke and not a sign of something more serious.  

In the meantime, we are looking forward to spending Easter together as a family and celebrating Josiah's 6th birthday here at home next month.

We Have a Surgery Date!

 Good morning!  I know it's been a while since we updated last, but thankfully our lives have been relatively uneventful the last few months.  Lots of quarantining at home, going to doctor appointments, and hibernating from the ice storm last week.  

Back in November, when we saw the cardiologist in Houston, the plan was to get Jude presented in conference so his open heart surgery could be scheduled.  We gave them a couple of months, so the team would have time to present, make a plan and account for the holidays.  After not hearing from them by the beginning of the new year, I reached out just to check in.  Unfortunately, his cardiologist broke her arm badly the afternoon of the day we saw her.  She had to have surgery and had been out since that day.  Which means his notes never got finished, he hadn't been presented yet, and his cardiologist wasn't scheduled to be back in the office until May.  After lots of follow-up calls, pleading, and requests we finally got a consult scheduled with his surgeon at the end of January.  However, the day before we were supposed to meet, the surgeon had a last-minute emergency surgery and we had to reschedule.  That happens a lot at Texas Children's since they do lots of transplants and severe cases.  Nothing to be mad about - I said lots of prayers for the family who had to take his spot, because if it's emergent that's never a good thing.  We were able to schedule a tele-visit for the following week, which went well.  We were able to talk to the surgeon, ask all our questions and be briefed on the surgery options for Jude.  

The plan was to hear back from them in the next week or so to schedule his surgery.  However, Mother Nature had other ideas in mind and sent the polar vortex.  Texas was hit hard and the electrical grid was pushed to its limits, which means the hospital had to cancel surgeries and not much was done last week.  But this morning, I finally got the called we had been waiting for since November - Jude is scheduled for surgery on April 22! 

We are nervous/excited.  Having this surgery will help improve his oxygen sats so he can breathe better, grow more, and live an all-around better life.  But open-heart surgery is nerve-wracking. On top of that, we aren't 100% sure of the exact type of surgery they will be doing.  And we won't know until they actually start the surgery. There is a very small chance that Jude will be able to have a bi-ventricular repair, which would entail the doctor fixing his heart to be rewired as it should be. In essence, Jude could live a completely normal life if that is the surgery they are able to do.  However, the odds are very, very small that this type of repair will be possible.  Most likely he will need a 2-step heart surgery called the Glenn and Fontan.  The Glenn would be done in April and then another open heart surgery would be required to do the Fontan when he is 4-6 years old.  This is not a fix, but rather a circumventing of the heart.  Jude would still live a mostly normal life, but there would be limitations on what he can do throughout his life and health issues in the future. The bi-ventricular repair would be the optimal surgery, but we will be thankful for any help that he can get.  One of the main reasons we have continued our care in Houston is to provide him this opportunity to have a bi-ventricular repair.  There are only a couple of programs in the country that offer that as an option for his particular heart condition, and we want to give him the best opportunities we can.  

Future plans include a cardiologist appointment in Houston in March just as a check-up.  Since his cardiologist is still out (she had to have another surgery on her arm), it will be with a new, temporary doctor.  It's super important that we keep him healthy leading up to his surgery (no fevers, runny nose, etc.) or he will have to rescheduled.  For the winter season, he has been getting monthly vaccines to help prevent RSV and those go through April.  For his surgery, we have to go down a couple of days before to Houston for pre-op appointments including COVID testing, blood work, X-rays, meeting the surgeon in person, etc. The average time in the hospital for the Glenn procedure is 7 days, followed by a week in Houston and follow-up appointments with the surgeon and cardiologist to make sure Jude is handling everything well before we return to Dallas. We are all hoping (his hospital team included) that this experience will be much smoother than his stay at birth. 

In other news, Jude turned 1 year old on January 31!  He now has 6 teeth (he decided to cut them all at once) and loves to grind them together (the noise that makes me literally want to climb the wall!!). He had a Developmental Outcomes appointment in January and is still in a good range developmentally.  We will meet with them again in Houston when he is 18 months old. The dietitian has been helpful in making sure Jude is getting enough calories as we transitioned over to whole milk.  He gets to drink Pediaure now, in addition to milk, which he likes.  He has finally made it back to the 10% in his weight and is still barely on the chart for his height.  He's gonna be a little short. 😊

Alex and Josiah are still attending school virtually and enjoying it the best they can.  Our hope is that they will be able to go in-person next year, but it will depend on the number of cases and vaccine opportunities for them.  (Jude will still have lower oxygen sats if he has the Glenn, which means it will be important to keep him healthy leading up to his next open heart surgery.)  Alex will be starting middle school and is excited to be able to pick out his classes for next year.  Josiah just keeps asking me how many days until his next birthday. 🤦🏻‍♀️

This post was a little longer that I originally intended, but wanted to update everyone.  We so appreciate the kind words and prayers from everyone.  Thank you for the love you have shown our family!

Drive-through Christmas Lights in Houston

 So I'm a couple of weeks late, but I wanted to share with everyone about the drive-through Christmas lights we went to while in Houston.  During the day Jude and I had spent the afternoon at the hospital doing all his tests and seeing the doctor, so we wanted to have a celebratory family outing! After looking at a couple of different options for things to do that evening that were 1) socially-distant and 2) would keep Jude entertained, the vote went to Rudolph's Light Show.  Houston has several different drive-through Christmas lights, but this was the original according to the Internet, so we decided to go with it.

First, here's the website for anyone interested:  https://www.rudolphslightshow.com/ 

It's located at 19623 Bauer Road, Hockley, TX, which is about an hour from the Medical Center.  It was rush hour, so traffic had some spots that were slowed down, but it really wasn't too bad.  You can tell that a lot of people are still working from home based on how much lighter the traffic is during rush hour.  The lights open at 6:30 p.m. and we arrived not long after that.  Since it was a weeknight and the beginning of the holiday season, they weren't very busy. But based on their car lanes and organization, I imagine it gets pretty packed on the weekends.  There were signs at the beginning to tell you which radio station to turn to for the music.  We purchased our tickets online (you pay by car), so received a little bit of a discount that way.  We just showed them my phone and they scanned the barcode and let us in.  

The speed limit was 6 mph, so we were able to unbuckle and the kids took turns sticking their head out the top to see the lights.

They had several of these tunnels that were so pretty to go through!

For Jude, we rolled down the back window and let him look out.  He was a little unsure with all the sights/sounds at first, but he warmed up to it after a few minutes.

Josiah thought it was fun to stand on the console and stick his head out the top, but only for a minute.

This tree was my favorite part.  The lights would move/dance with the music and it was very impressive!

Same tree, different design

After we went through, they were offering a free 2nd look, so we said sure!  We had to exit, go down the highway a bit, and re-enter, but it didn't take more than a couple of minutes.  Back again!

It took us about 15-20 minutes to drive through each time, but I imagine when they are busier it would take longer.  We have done drive-through lights before, both when Alex was a baby and Josiah was a toddler and they turned into disaster outings (i.e. screaming children for 45 minutes). But this time it was a really fun outing!  I would recommend going during the week right when they open to help with the crowds if you have littles that don't like to wait. Also, there wasn't a whole lot nearby to pick up to eat, but we ordered pick-up from Cyclone Anayas closer to our hotel.  It's one of my favorite Mexican restaurants in Houston (LOVE their crab nachos).  

After the day of virtual schooling, Jude's doctor appointments and this outing we were tired, but so thankful for the family memories we got to make together.  And thankful that we would get to go home the next day!

Jude's 9 Month Update

 It seems unbelievable that it's been over 9 months since Jude was born.  And what an eventful 9 months it has been, for us and the rest of the world.  Jude's checkup with his cardiologist in Houston was last week.  There are still restrictions and only one parent is allowed to go into the hospital with him.  Even though I suggested we flip a coin, Jesse vetoed that idea and nominated me.  😫 

His appointments are a many-houred affair that start with a Covid screening and temperature check.  (Let me insert right here that Jude has EXTREME stranger anxiety right now.  This is mostly due to the fact that we don't leave the house to go places unless it involves a doctor's office, so he usually is getting a shot, or tests, or something of that sort.  Basically, baby torture.  So, whenever anyone who isn't me, Jesse, or his brothers comes close he immediately screams.) Since Jude can't wear a mask, I use one of the plastic rain covers to put over his stroller to help keep at least some of the germs away. Temperature Check=Meltdown #1

Next it was on to the 21st floor to check in for our appointment.  Texas Children's has always done a really great job of getting us back to the room fairly quickly.  I was still working to put on his patient band when we were called back. It does around his ankle and is fairly tight. Patient band=Meltdown #2

Upon going back, the first thing to be done is vitals.  Which means SERIOUS meltdown #3 while they do height, blood pressure, oxygen sats, and weight (naked).  No surprises for those, thankfully, and he actually is back on the growth chart for his weight! We've continued adding butter to his food and now are fortifying his formula (no more breastfeeding), and it seems to be working.

Next, it was time for his echocardiogram.  This usually takes around 45 minutes-1 hour while they do an ultrasound on his chest to check his stent and make sure flow is good, etc.  Although he did slightly better than in September, it was still 45 minutes of screaming.  aka Meltdown #4. No amount of consoling, youtube, toys or snacks could get him to calm down (and believe me, I tried so hard).  But as soon as everyone left the room, he looked like this: 

I apologized profusely to the ultrasound tech, and she assured me that is pretty much the norm for kiddos his age. Taking those lead stickers off after we were finished led to Meltdown #5.  

After the echo, it was time for his chest x-ray.  This is absolute torture for him because of the way he has to be positioned (arms over his head while being held down by two adults), but at least it only takes a few moments.  Meltdown #6

All procedures were finished, so we spent the next 30 minutes waiting to see the doctor.  Jude was calm and played with his toys while we waited.  

This was our view from the room.  Seeing all the hospitals in this area and knowing how extremely hard healthcare workers are working right now gave me a moment for pause.  There are literally thousands of patients seen every day at the 21 hospitals that make up the Medical Center.  The amount of lives that are changed here on a daily basis, either for good or bad, is astounding to me.  I am truly grateful for people that choose to dedicate their lives to learning about the plethora of diseases, finding new ways to fight those diseases and helping to heal others every day. I am also thankful we live in a place to have the healthcare available to us and the insurance we have to pay for it.  There are lots of families that travel pretty far to bring their kiddos to Texas Children's, and we are fortunate to only be a few hours away.  

Jude was Dr. Ayres's last patient of the day, so we had a nice visit with her as she covered any updates/changes.  She felt it is time to move to the next step of Jude's journey, which is open heart surgery.  It's the moment I've been dreading since we left the hospital in March, but I knew it was coming eventually.  Jude will be presented at their cardiac conferences in the next week or two.  After the appropriate plan has been determined and surgeon chosen, we will get a call to set up a surgical consult.  Right now, we don't have any firm dates, but she guessed his surgery would probably be in the next month or two.  Hopefully this will be a shorter hospital stay and since he is on the older age range for this particular surgery, the hope is he will recover quickly.  

Oh, and Jude doesn't like the stethoscope, so meltdown #7 ensued when she brought that out.  I don't know which of us was more glad to be finished with the visit Jude or me. Ha!  Also, it's hard for Jesse because he can't be there and all the things that could be happening are running through his mind across the street at the hotel.  Every time we leave the hospital, it is cause for joy!

As a celebration for a good appointment, we chose to go see some drive-through Christmas lights that evening.  I'll do a post of those next since they were a great social-distanced activity that we all really enjoyed.

I can't explain the dread that fills my body when I think of my baby being cut open and his heart operated on.  I know he's strong, I know he is a fighter, but it doesn't take away the anxiety that floods in.  Right now, our family is focusing on being thankful for each day that we are all healthy and get to be home together. 

We are looking forward to a Thanksgiving at home and the boys are soooo excited about having this week off from school. Wishing everyone a Happy Thanksgiving!

Jude’s New Diet

 We had our virtual visit with the dietician today and Jude’s new diet is one we wish we could all have - add butter and oils to your food! We will add a little to each meal he eats and the hope is that will be enough to get him to the goal growth curve they want him to be on. Because his little body works so much harder than normal to his blood where it needs to go and his oxygen saturations are lower than the average person, he burns calories a lot faster than the average baby. This is something he will battle going forward, but hopefully these small changes will do the trick. 

His next appointment will be with the pediatrician next week for his 6 month checkup and shots.

Here Jude is eating his dinner with some added olive oil. He seems to approve so far. 😊

Happy Heart Check-up/Concerns about Growth Curve

 Jude had another checkup with his cardiologist in Dallas today.  His heart continues do to as it should with good oxygen saturations for Jude.  However, the doctor is concerned about Jude's rate of weight gain.  He is gaining weight, just not at the rate at which he should.  This is common for kids with CHD, so it's not something that is shocking to us.  It does mean more appointments and added steps in Jude's daily care, but we will take it in stride and do what needs to be done to help Jude.  The next step is a virtual visit with a dietician on Monday, to get her recommendations for what we can do to help him to gain weight. Then we will go back to the cardiologist in 2 weeks for a weight check.  Our next cardiologist appointment in Houston will be mid-September.

Our older boys have adapted to virtual learning for this semester and have been really great in helping with Jude as he grows. He loves his big brothers!