Category: Testimonies

Hey friends, things have been going well since Judah’s surgery this past Thursday. I’ll catch up those of you that haven’t seen my Facebook posts. If you just want the latest news you can skip down to the break.

After about a 7 hour surgery, we talked to the surgeon, who had a great report–everything went as planned. That night, Judah was extubated (the breathing tube was removed that went through his mouth, needed during surgery) without any problems. His first words were, “I was so brave.” Then he tried to flex his muscles –– perfect! It was great to see a tiny bit of personality.

The first night Judah hardly slept. He didn’t seem to be in a lot of pain, he was just awake most of the night. Yesterday, Friday, was a pretty calm day. Medically, he’s doing well, but he’s uncomfortable and cranky most of the day (which is to be expected). They removed an IV line, so that made things a little easier.

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Last night he slept well (which is great) and today he’s back on a normal wake/sleep schedule. It’s been a similar day today, and we’re still seeing medical progress. He’s been weaning off a few medicines and is able to eat and drink. They took out his arterial IV line from his wrist and we saw a HUGE change in Judah. He’s talking, asking questions, playing a little, and overall much more himself. We’re VERY happy about that. We miss our goofy little guy. He was also able to be helped out of bed and into a chair for a few minutes. It’s amazing what he’s able to do only 48 hours after major open-heart surgery.

Tomorrow, we hope to get him up walking around a bit and Monday we’ll continue getting more mobile.

Our biggest concern at this point is that he has some fluid in his lungs. He has a really hard time coughing due to the pain his chest and torso are in. It’s important that he is able to clear all the “junk” out so that it doesn’t settle in his lungs.

We SO appreciate the support from you all. Whether it’s thoughts, vibes, or prayers, it means so much to us! We always ask for prayer because it’s what we believe in. We’ve seen it and felt it in action. We’ve lived it. It’s a unique feeling when you can feel the prayers of others, actually holding you up in times like these. We’re grateful to God for His grace and strength over the past few days. He’s been so good to us and to Judah.

Looking forward to reporting more good news!

Much love,
Nick & Liz

Hey everyone! In case you missed on Facebook, Judah does not need the surgery and we are back home after just an overnight stay!

After looking at Judah’s airways, the doctors saw that his airway is much more open than they thought or expected. They concluded that his airway is only 10% smaller than the average kid his age! In our mind, this is a miracle! They decided to use a laser to cut away some “webbed” scarring in a few spots, and also used a balloon to stretch it out as well. They kept him overnight, just for observation.

In a few weeks, we’ll go in for a sleep study where they’ll monitor Judah as he sleeps with his trach “capped” (plugged, forcing him to move all the air around (instead of through) his trach in his airway). If all goes well, we’ll go back into the hospital soon after that, and they’ll take out his trach (takes one second, we switch it out every two weeks), put a bandage over the stoma (hole where the trach was) and we’ll stay overnight for observation. It is the doctor’s expectation that this will all be done before the end of this summer!

This result is far better than we expected! We’re grateful to serve a God that exceeds our expectations! A few days ago, we felt we needed to stretch our faith to believe for more…and God went even further than that!

Thank you all for your prayers! If we could thank you all personally, we would. We’ll let you know how things progress from here!

Much love,
Nick & Liz

Hey friends, we’re home and doing great! Full blog post tomorrow.

Much love!

Well, we originally planned this vacation as a celebration for Judah getting his trach out, but when that didn’t happen, we decided we were going away. And we’re so glad we did, we had the best time!

Just to remind you of why this was so  special for us, here are a few pictures of where we’ve come from.

We’re so glad he’s been doing so well. He decided to start walking while in Florida! He’s a little wobbley, but that’s to be expected. Thank you Lord for never leaving us on this incredible journey. That’s all for now, enjoy the pics!

The plane ride down
Buckle up!

Very focused

His new favorite face to make…

Oreos

This is what happens when I try to take pictures of him while the TV is on.

He loves to splash!

Hello?

The beach!

Loving the waves!

As many of you know, Judah has been doing very well since having his second heart surgery in October. He’s been growing, babbling a lot, learning to walk, and most importantly, he hasn’t needed a ventilator in 4 weeks! We are constantly in awe of how blessed we are to have Judah. It’s amazing how much joy he brings us and those around him. God has been so good to us!

Early Monday morning, we will take Judah into Strong Memorial Hospital for a bronchoscopy. This is where they will look down his throat with a camera to make sure his upper airways are wide enough to support him breathing without the trach. (For full details about why, read our last post here.)

If his airways are clear, they will remove the trach (decannulation) right then, cover the stoma (hole where the trach was) and let it close naturally. (When the stoma is allowed to close naturally, it can take anywhere from a couple weeks to several months.) After a couple days of observation in the hospital, we’ll be able to go home with no trach!

If they find that his upper airways are narrow, it will most likely be due to acquired scar tissue (from having a breathing tube in for his first couple months). If this is the case, they would have to remove the scar tissue. This would extend our stay in the hospital to about a week. 

We ask that you stand with us in prayer, that they will find his airways 100% open, that the trach will be removed without any complication, and that we’ll be back home soon.

Whatever the outcome, we are so excited to be able to close this chapter of our lives. I still remember the first time we heard the word “trach” and how hard it hit us. To be here, now, is an amazing feeling. We truly praise God for how far Judah has come.

We are so thankful for your thoughts and prayers. Please keep them coming!

Much love,
Nick & Liz

Hey everyone,

Happy New Year! We feel so blessed to be able to celebrate this year at home with Judah, and are so grateful that he has remained healthy! We thought that with a new year starting, it would be a great time to update you all on what’s been going on with Judah.

He has been doing great! Aside from the few weeks following his heart surgery, Judah has been off the vent for 12-14 hours during the day since late summer. When he goes to bed, we reconnect his trach to the vent for the night. At a follow up cardiology appointment in December, we expressed our desire to be as aggressive as the doctors feel comfortable to get the trach out. His doctors said that at the first of the new year, they would consider him officially recovered from his surgery, and would feel comfortable with us beginning the process of removing the trach! So, next week, we’ll be taking him to his pulmonologist (lung doctor) to take the first step in taking the trach out. That first step is decreasing his vent settings so that he will be doing more work at night. If all goes well, the trach will come out and we’ll come home without the trach or vent! We anticipate this to happen sometime in early March.

It has been an unbelievable year for us. Like all of you, we’ve had our ups and downs and are looking to 2014 to be an awesome and exciting year. God has sustained us in the darkest of hours and it’s our prayer that all of you would find the same goodness and love that we found when we looked to Him. God is good.

Thank you all so much for your prayers and support over all this time. It really is amazing to us! Please keep Judah in your prayers as we begin “go after” getting the trach out. We believe he’s ready and can’t wait to start moving forward.

We’ll leave you with a few pictures from the last year.

Much love,
Nick & Liz

Hey friends,

Well, it’s been a very up and down couple of days for us. His fever would come and go without any explanation as to what was causing it. He had been on antibiotics since Friday and getting regular doses of Tylenol and Motrin, and the fever would still spike through. Because all of his tests and cultures kept coming back negative, everyone has been at a loss. Today, we decieded to stop the antibiotics and the fever has been gone since late morning. Whether it’s a coincidence or a direct result, no one’s sure yet. We just hope it doesn’t return.

In other good news, Judah turned one yesterday! It’s been an unbelievable year for the three of us. One year ago today they gave us the news of Judah’s heart defect. Needless to say, it completely wrecked us. We’re so grateful that he has made it through so many hardships. Just the fact that he was able to sit on our laps tonight and watch a movie with us fills our hearts with joy.

More good news

• His drainage was low enough over the weekend that they removed the chest tube yesterday morning. He’s happy about that!
• He passed his swallow test (pharyngogram) with flying colors! He’s also started drinking (a very small amount of) water from a sippy cup and baby food from a spoon! This is a HUGE step that we didn’t expect to happen until winter-spring. He’s not taking a lot yet but the fact that he wants it is amazing!
• The amount of times he throws up during the day has dramatically dropped since surgery and since switching formulas.

Even though we’re still here we have a lot to be grateful for. Please continue to pray that the fever does not return and Judah has a good night. If that happens, we start to talk about going home.

Thank you all so much for sticking with us through this past year. Your words, prayers and gifts have blessed us beyond what our words can say. We’re so grateful for what God has brought us through and that He has never left our side.

Thank you!

Much, much love,

Nick & Liz