Thursday Night Update – Still Good!

Hey Everyone,

Judah is doing well. Yesterday they took his art (arterial) line out and today they took the internal jugular line out that was in his neck. That just leaves his chest drainage tube and an IV line that’s in his arm.

He is progressing very well. Each day the swelling (which is normal) goes down and he seems to be (slowly) returning to himself. Today we had him out of bed and playing on a mat on the floor. He didn’t like it very much but it’s good for him. :)

We started feeding him through his g-tube as well today. Not very much to start but we will continue to work up to full feeds over the next few days.

The only issue we’re having is he seems to be having an allergic reaction to something. He has a pretty angry rash around the areas where they’ve either cleaned with a medical solution (like Betadine) or used some sort of tape or adhesive. We all agree it’s not something from a medication. Right now he’s getting Benadryl regularly but it doesn’t seem to be getting rid of it. We will talk with the team in the morning and hopefully figure something out.

I would say we’re actually ahead of schedule in terms of when we’re going home. We know nothing is guaranteed here but we’re very grateful to God for where we are.

Prayer requests:

  • That Judah would continue to progress and be able to handle the increase in food
  • That his allergic reaction would subside
  • That the doctors would have wisdom in what to do at every step with Judah
  • That there would be no complications and we would be able to bring Judah home soon

Thank you all so much for your thoughts and prayers. They mean so much to us!

Much love,
Nick & Liz

Tuesday Update: Doing Well

Hey everyone,

Judah is doing very well! He’s been mostly sleeping (thanks to some meds) since he came up from surgery yesterday. He opened his eyes a few times this afternoon but not for long. Everything is going well. We removed the breathing tube and put him back on his regular trach. Other than that there isn’t much to report. Things are progressing normally for what he’s been through.

Please continue to pray for a quick recovery, no complications, no infections and wisdom for our doctors and nurses.

Liz and I are doing great. Since he’s been asleep since yesterday, we have been able to catch up on sleep ourselves and we’re feeling good. Thanks for your prayers!

Much love,
Nick & Liz

Here’s a photo from yesterday morning that I thought I’d share:

Judah in Gown for Post

Judah getting ready for surgery!

 

Out of Surgery

Hey everyone, Judah is out of surgery and things went very well! Not a lot of details right now but we will be able to be with him soon. If I can, I’ll update more tonight. We’re pretty exhausted so it might not be until tomorrow.

Thanks for all the prayers!

Much love,
Nick & Liz

“Glenn” Heart Surgery Tomorrow

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Hey friends,

Early tomorrow morning will be heading to Strong Memorial Hospital for Judah’s second open heart surgery called the “Glenn“. This is the second of three heart surgeries he needs by the age of five. We will bring him in at 6:30AM and by 7:30AM they will have begun the procedure. They expect it to take up to 5 hours with the heart surgery itself only taking 30 minutes.

At this point the biggest concern is infection. As most of you know, he has a trach and has been on a vent since he was born. The issue is that the hole for the trach is only an inch above where his chest incision will be. It’s very important that drainage from one area doesn’t get to the other. There is also some concern with some extra veins that have grown, but we are hoping that will correct itself after surgery. (Read this post for more info about that.) That’s all on top of recovering from major heart surgery. Because of all these reasons, they expect our stay to be about three weeks. This is about a week longer than most kids with this surgery.

Even though Judah is now off the vent for 12-14 hours a day, they have no intention of removing the trach while we’re in the hospital. They would like to see him fully recover with the help of the vent and then discuss removing the trach. Full recovery is about 4-6 weeks.

This last year has been crazy for us. One year ago we were expecting a completely health baby boy. The biggest thing that has gotten us through is our faith in God. His grace and peace has touched us in the realest way imaginable. If you’re willing, we ask you to keep us and Judah in your prayers tomorrow and in the coming days and weeks.

Here are a few requests:

  • We believe God is still able to do miracles. We will never stop hoping and believing for a miracle in Judah’s body.
  • A complete success in surgery.
  • A quick recovery without complications or infections.
  • Grace, peace and strength for Liz and I.

Thank you all for praying, believing and standing with us this past year! We are so grateful for you all!

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Below are more details on what HLHS is and what they will be doing tomorrow.

Much love,
Nick & Liz

 

What is HLHS?

 

Judah’s first surgery last November called the “Norwood”

 

What they will do tomorrow (the “Glenn”)

Surgery Scheduled; Rescheduled

Judah swinging with his cousins today

Judah swinging with his cousins today

Hey friends, Judah’s next surgery had been planned for this week Thursday, October 17th but has been rescheduled for Monday, October 28th. The reason is simply because the hospital doesn’t have a bed available for Judah until then. We have mixed emotions about the delay. Part of us really just wanted to get it over with, but we’re a bit relieved as well. With a couple extra weeks before the surgery, I’ll be able to wrap up all the wedding photography editing from this season, and hopefully “winterize” the house so that when we come home we will be able to focus on Judah. Judah has really grown a lot since we’ve been home. When we left the hospital he was not quite 13lbs. Last week he weighed in at 20lbs! We’re pretty sure it’s mostly in the cheeks ;). You can take a look at his growth chart here: Growth Chart We don’t have a lot of other news to report but I just wanted to clarify the findings of the testing done a few weeks ago.

  • Back in January they found that some of his airways would collapse when he took a breath. This lead to the trach and vent. We were told that his airways would grow and be strong enough to where he wouldn’t need either. That could take anywhere from 6 months to 4 years. We are (VERY) happy to report that his airways are 100% normal! He is now able to be off the vent for 12 hours a day! He does great with it, and this makes life exponentially easier for us, so this is obviously great news.
  • They want to leave him on the vent until he is fully recovered from surgery. The vent can be frustrating to deal with, but it keeps him very stable and that’s key for recovery. By the time Judah has fully recovered from surgery, it will be the middle of both winter and flu season, so it’s likely they will wait until spring to take him off the vent and remove the trach permanently.
  • Although his airways are 100%, they discovered a blood flow problem that I talked about in my last post. These are two completely different and unrelated issues. The hope is that his body will correct this problem after the surgery.
  • He is very stable right now but his heart is ready for the next surgery. He will need one more surgery after this, which is the last in the three stage process. That surgery will be around the age of 5.

We are believing to see miracles in Judah’s body. Our God is able. We ask you to stand in faith with us.

Thanks everyone, we really appreciate you all standing with us!

Much love,
Nick & Liz