Big Day!

Hey friends,

We had a pretty big (and great) day! Judah had a good night. When we came in this morning they were very optimistic about take his breathing tube out, and that’s exactly what they did! Within seconds of removing the tube Judah even appeared to be smiling (see above photo). He was immediately doing well and visibly better than the last time they tried extubating him. Throughout the day he has remained steady and has been breathing well. Last time, his BPM (breaths per minute) were in the 40-60 range and you could see him working hard to breathe. Now he looks very comfortable and his BPM are in the low 30’s, which is exactly where we want him. It is always a possibility that they will have to re-intubate him again, but we hope and pray that won’t happen. We feel like this is the first time we’ve been able to interact with him. It’s been a really great afternoon!

In addition to getting his breathing tube out, they also removed the chest (drainage) tube that has been in since the heart surgery 19 days ago. The output had dropped to almost nothing so they felt comfortable taking it out. His will still have the other chest tube in on his left side (that was put in yesterday during his diaphragm surgery). This will hopefully be removed by the end of the week.

Since his surgery yesterday he has been on IV fluids but tomorrow the doctors will try to figure out what the best method is to give him nutrients. They aren’t sure if they will go back to some type of formula or breast milk. As I mentioned in this post, Judah’s body had a hard time handling the fat that’s naturally in breast milk. The problem is he needs the calories from the fat in order to grow, so we aren’t sure what they will decide to do. Our hope is that he’ll be able to take whatever he needs through his mouth and not have to keep the feeding tube that’s going in through his nose, or even worse, need to have a G-Tube put into his stomach.

Here are our prayer requests:
– that he would continue to breathe on his own with no complications
– that God would give the doctors wisdom in deciding how to feed him
– that Judah would be able to take food (liquids) by mouth and his body would be able to handle fats and grow

Thanks everyone for your constant prayer and support. You’re all the best!

Much love,
Nick & Liz

Tuesday Evening Post-Op

Hey Friends,

Nothing has really changed since this afternoon. Judah is pretty stable and still has a breathing tube in. They decided not to extubate him because he still seemed kind of “out of it” since his surgery. This is pretty common. They will begin weaning him off the breathing tube tonight and see how he is doing tomorrow. Other than that he is a little uncomfortable but that’s to be expected after surgery.

Please be praying that Judah will continue to be stable through the night, he will tolerate being weaned off the ventilator, and that he would be able to breathe normally on his own.

“Surgery day” is always exhausting for us but we have felt God’s grace through it all. “Some trust in chariots and some in horses, but we trust in the name of the Lord our God.” –Psalm 20:7

Thanks so much!

Much love,
Nick & Liz

Like A Boss

Judah’s diaphragm surgery went great! No problems whatsoever! We praise God for bringing him through!

The surgeon was very happy with how Judah handled everything. He even gave him a “tune up,” meaning he cleaned out his chest dressing, removed some of the stitches and tidied a few other things. We’re back in the bay area, where we’ve been since we got to Strong, and he’s responding well to his post-op check up. There’s even talk of extubating (taking out his breathing tube) him this afternoon. The reasons being, (1) the area they did the surgery will be numb for about 18 hours so it won’t hurt to breathe and he won’t need a lot of meds that would make him drowsy and (2) his breathing “mechanics” were great beforehand, so he should do well this time around, too. That may not happen, but the fact that they are talking about it is encouraging.

I’ll post more later tonight. Until then, lets pray he would continue to recover well, that the doctors would have wisdom regarding when to extubate him, and if they do, that he would do well breathing on his own.

Thank you all again for carrying us in this time! Your thoughts, prayers and messages mean so very much to us!

Much love,
Nick & Liz

Diaphragm Surgery Tomorrow

Judah looking unimpressed with his new friend

Tomorrow morning around 7:30AM they will take Judah to have surgery on his diaphragm. In case you missed it, you can read this blog entry to find out why he needs this procedure. Technically, it’s called “Left Thoracotomy with Left Hemidiaphragm Plication”. (Good luck google-ing that.) He’ll undergo general anesthesia and then they will open his left side to do the operation. The procedure itself will take about an hour and a half and he’ll be gone from his bay for about three hours. Hopefully, by 11AM we should be able to see him again. There is significantly less risk with this operation, but risk nonetheless.

Judah has also been on Enfaport now since Friday, which is pretty harsh on the stomach and also makes for some major diaper rash. He has an extremely raw bottom from all the diaper changes. He has also been spitting up and throwing up his formula, so they reduced how much he’s getting. They have done an Upper GI study that showed everything was okay so we’re not sure if the problem is as simple as the formula being too harsh or if there is even a problem at all.

Today we talked with the surgeon about the possibility of putting in a G-Tube in tomorrow (as I mentioned in yesterday’s post). The surgeon said, “Not a chance.” It’s not that he doesn’t think he might need one, but that he doesn’t think it’s a good idea to do both surgeries at the same time. So that was easy.

Please continue to pray for our Judah. Here are some specific requests:
– that he would be able to keep all his formula down tonight and that all stomach/digestion issues would cease
– that he handles the general anesthesia with no problems
– that God would be with the surgeons as they operate and it would be a textbook-perfect procedure with zero complications
– that he would recover quickly and be able to get the breathing tube out by the end of the week without complications

We are ultimately believing for complete healing in Judah’s body, but while we wait, we pray for the specifics.

We love you all so much! Thank you for praying and believing with us!

I will give a short update shortly after we hear back post-operation tomorrow.

Much love,
Nick & Liz

Worship. Always.

Photo by: Drew Koszulinski

Hi friends,

It’s been a busy few days so we’re pretty tired out, but everything has remained pretty steady with Judah. Yesterday I was gone from 9AM to 1AM to shoot a wedding in Buffalo and Liz’s mom spent the day with her. Today, we decided to go to The Fathers House for church and we met some friends from home for dinner this evening. Our home church is in Warsaw but we didn’t want to be away for so long two days in a row. We are very grateful to have such a good church so close to us. We felt encouraged and blessed to join them in worship.

I’ve learned a lot of valuable things throughout life but none was more important than the lesson I learned from my mom when I was 14. My dad had just passed away. We decided we wanted to have worship songs at the funeral. My mom normally sang on the worship team, but for this day, she stood with my sister and I in the front row. Half way through, my mom walked on stage, picked up a mic, and began to worship God with the rest of the team. It was a statement. It was something she had to do. She was going to worship God and declare that He, in the midst of tremendous and devastating loss, was still worthy to be praised. I carried this lesson from that day to this day. I learned that no matter what, you worship. Always.

Today we had a chance to worship with other believers. We did. We sang, “Through the storm, He is Lord, Lord of all.” This does something inside of you. It changes everything. When the evil of sickness and disease and tragedy comes at you like a tidal wave, and you stand in the face of it and declare that our God is worthy, everything shifts. Something inside you stirs and faith rises up. Liz and I hoped from the first day we heard the news of Judah’s heart, that even in all of this, God would use us to encourage others and point to Jesus. So today, even with our hearts still so tender and fragile, and while in the midst of this storm, we declare that God is worthy and that we will worship Him. Always.

Judah news:

There hasn’t been much change or news over the past few days. Like we’ve said, no news is good news. He has been pretty stable and we are still on track to have his surgery on Tuesday.

Tomorrow we will talk to the doctors about possibly putting in a “G-Tube” (gastrostomy tube) at the same time they operate on his diaphragm. This was brought up last week and had been something we had decided against, but now some of the doctors think it might be a good idea. So, we will talk it through tomorrow. It was our hope that he would not need one at all, but right now it looks like this might be the best option. If we decide to do it, I will fill you all in on the pros and cons tomorrow.

Please pray that Judah continues to hold down the new formula (Enfaport) as it can be harsh on the stomach the first few days. Also, that God would give us and the doctors wisdom for the decisions that need to be made tomorrow about the G-Tube. We still pray and ask God to heal Judah from all of these things. We believe He is able!

Thank you all for you constant support and prayers. It means so much to us!

Much love,
Nick and Liz