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.