Monday, November 23, 2020

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!

1 comment:

  1. Yes, enjoy this week, then next week, and worry about the surgery when it gets here. God has a plan in all of this, we just don't know what it is yet.