Sunday, July 25, 2021

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.

Tuesday, April 27, 2021

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. 

Monday, April 26, 2021

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!

Sunday, April 25, 2021

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! πŸ’™

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! πŸ˜€We all miss being with Alex and Josiah and look forward to seeing them again, hopefully soon.  

Saturday, April 24, 2021

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!

Wednesday, April 21, 2021

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 πŸ˜†)
  • 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. 

Thursday, March 18, 2021

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.

Wednesday, March 17, 2021

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 πŸ˜‚. 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.

Tuesday, February 23, 2021

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!