Welp, that went well…

J & G

Judah waiting with me for Liz and Gigi to pick us up // Back home, playing in the yard

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

Great News Should Be Shared!

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Judah on a walk with Grandma without the IV pole

Hey friends,

No news is good news but great news should be shared. Tonight, we have lots of great news!

1) This morning, Judah had an X-ray and it looks amazing! When we first came in, his lungs were full of fluid, but today, they look very clear!

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(Left) Judah’s lungs when we first came in, (Right) Judah’s lungs today (Black = air, grey = fluid)

2) He did great over the weekend with only a half dose of Milrinone, so today they took him off completely. As a result, they were able to disconnect him from his IV line which gives him much more freedom to move around. Our hope is that he’ll do well without the Milrinone over the next few days so that we’ll be done with it.

3) From when he was his sickest, the size of his heart has gone down and the valve that was leaking isn’t leaking as much. These are both very good things! If his heart continues to do well, we may be able to still have his trach removed in the coming months.

If he continues to do well, we will start trying to get him off the vent. Our hope is to start that on Wednesday. Hopefully, he’ll do well enough to go home without the vent at all.

Please be praying that his body and heart will be fine without Milrinone and that he will be able to come off the vent before we come home. Also, that God would give our doctors wisdom, and that Giana, Liz and I would stay healthy while we’re here in the hospital.

We serve a great God and we are so thankful for Judah’s quick turnaround! Thank you all for following our story!

Much love,
Nick & Liz

Feeling Good and Seeing Progress

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Drawing on the window (with a dry erase marker)

Hey everyone,

Judah has been doing great! (Remember, no news is good news!) He’s just about back to normal as far as his personality goes. We’re so happy to see our happy, goofy kid back! He is back to sleeping through the night as well, which is a great sign. He’s spending his days playing in bed, going for walks around the unit, and flirting with the nurses.

At this point, the immediate goal is to wean him off of a medication called Milrinone. It helps his heart pump better. The problem with it, is that it’s only given through an IV. This isn’t an option for us to do at home. As we wean him, we’ll have to balance the other meds that he’s on to keep everything working right. This process takes a week or so. We hope by Tuesday or Wednesday he’ll be off Milrinone completely, his other meds will be balanced, and he will tolerate all of it well. After that, we’ll look at getting him back off the vent. Hopefully, we will get him off completely. If not, maybe he would just need to be on it  at home at night, which would be manageable for us.

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Family walk around the unit

We’re happy to report that the fluid in his lungs has gone down significantly! This is one of the reasons he’s been feeling so good. Today, he had another echo to look at his heart function. We’re also glad to say that it looks better than it did last week. It’s only a slight change, but we’re grateful nonetheless!

We won’t know what the true condition of the heart is for at least a few weeks, maybe even months. If it goes back to how it was before he got sick, we would still be looking at the 3rd stage of his heart surgeries (the Fontan) around age 5. If the condition stays the same or gets worse, that surgery would probably not be an option. At this point, it could go so many directions, so we’re not going to get into that now.

Please be praying that we can wean him off Milrinone quickly and easily, that we can get him completely off the vent next week, and that God would bring healing to his heart and the rest of his body. Please also be praying for wisdom for his doctors and health to all of us while we’re here.

We are so grateful to God for Judah’s quick turnaround. He’s been so good to us! Thank you to all of you that have reached out, shared and liked our statuses, and sent thoughts and prayers our way. It all means a lot to us!

Much love,
Nick & Liz

Vacation!

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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.

Judah at 2 weeks old. Just after his first open heart surgery.

Judah at 2 weeks old. Just after his first open heart surgery.

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Judah at about a month old.

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
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His new favorite face to make…FB-Blog Vacation Pics-4089

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This is what happens when I try to take pictures of him while the TV is on.FB-Blog Vacation Pics-4178

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He loves to splash!FB-Blog Vacation Pics-4236

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Let’s get that trach out!

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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

BIG NEWS: No More Vent & Decannulation Scheduled

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Hey everyone!

We’re very happy to annouce that Judah no longer needs a ventilator to help him breathe!

Brief History
Since the day after Judah was born, he has needed to be on a ventilator. At first it was just to get him through surgery. But, after a few months and several attempts to let him breathe on his own, it was decided that he would need a tracheostomy tube and a vent 24 hours a day. We were told it would take anywhere from 9 months to 3 years for his lungs and airways to mature enough so that he wouldn’t need it. That changed everything for us. We would now need to learn how to care for him with a trach and have nurses caring for him in our house at least 10 hours a day. Of course, we were up for the challenge and were eventually able to bring him home.

Since late summer, Judah has been able to take more and more time off the vent. It started with just 10 minutes off per day, and by yesterday, he was up to only 4 hours ON the vent, every other day.

The News
When we took him to his pulmonary appointment yesterday, Liz was able to carry him into the hospital on her hip and carry just a diaper bag and suction machine. This was AMAZING for us! We used to have to bring a large stroller, a heavy vent with hard-to-manage circuit tubing hanging off, a suction machine and diaper bag.

They took some blood for a veinous blood gas lab. The results were excellent! After that, the decision was made that he no longer needs to use the vent – at all! This is the news we’ve been waiting for since last January. It feels great to finally be here.

Since he no longer needs the vent, we have a bronchoscopy scheduled for April 7th. During this procedure, they will examine his airways to make sure everything looks good. If everything goes well, 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 for observation in the hospital, we’ll be able to go home with no trach!

Possible Complication
Back in October of last year, Judah had his second open heart surgery. During the prep for the procedure, they took out his trach and tried to put a breathing tube through his mouth and into his lungs. As they were attempting to put the tube in, they had some trouble getting it past his upper airways. They were able to put the breathing tube through his trach stoma (hole) instead. The concern is that there is scar tissue in his upper airways from the few months he had the breathing tube down his throat. This wouldn’t have been noticed before because whenever they did a broncoscopy, they either put the camera through the breathing tube or through the trach, so they only looked at his lower airways. If that turns out to be the case, they would have to surgically remove the scar tissue and it would extend our hospital stay from a couple days to about a week. It’s also possible that the difficulty they had intubating him was a fluke and that there’s nothing wrong. This is what our pulmonologist believes and what we hope for. We didn’t say anything at the time because there was so much going on with the surgery, and we felt it would have been an information overload for our readers.

Prayer Requests
Please pray…

  • that Judah is able to remain off the vent completely over the next few weeks.
  • that there is no scar tissue in his upper airways and the trach will come out without any complications
  • that we’ll be able to bring Judah home after a couple days and the stoma (hole) will close quickly
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Me and Judah at Blue4Ben

As we celebrate this milestone, we also remember the Sauers and young Ben. We were able to go to the Blue4Ben benefit on Sunday that we had mentioned in our last blog post. It was unbelievable how many people were there! Western New York has really taken Ben to heart and it’s been amazing to see how far his story has reached and the lives it has touched. The Sauers are truly an incredible family. The way they have stood in the midst of this heart wrenching time is a testament to their relationship with God. Please continue to pray for a miracle for Ben. It’s his only chance and God is able! You can read their blog here: blue4ben.com.

Thank you for standing with us all these months! It means so much to us!

Much love,
Nick & Liz

Happy New Year!

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

First few hours. 11/11/12

First few hours. 11/11/12

36 hours after birth. Shortly after diagnosis.

36 hours after birth. Shortly after diagnosis.

Judah looking unimpressed with his new friend. 12/3/12

Judah looking unimpressed with his new friend. 12/3/12

Tape free face! A few days after his trach was put in. 1/19/13

Tape free face! A few days after his trach was put in. 1/19/13

Tongue out! 2/19/13

Tongue out! 2/19/13

The hood picture. 3/13/12

The hoodie picture. 3/13/12

Home! 4/17/13

Home! 4/17/13

Judah and his cousin Levi. 5/5/13

Judah and his cousin Levi. 5/5/13

Judah in his swing! 8/28/13

Judah in his swing! 8/21/13

Happy baby! 8/28/13

Happy baby! 8/28/13

Overnight prep for heart surgery. 9/23/13

Overnight prep for heart surgery. 9/23/13

Getting ready for the big day! 10/29/13

Getting ready for the big day! 10/28/13

Recovering. 11/7/13

Recovering. 11/7/13

Birthday presents! 11/11/13

Birthday presents! 11/11/13

Judah playing in the snow!  12/18/13

Judah playing in the snow! 12/18/13

Judah Turned One!

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From one of Judah’s favorite nurses

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

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“Reading” a birthday card

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From Aunt Alicia and Alex

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Sweeeeeet potatoes!

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More?

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A drum to beat on (or eat) from Grandma

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Cookie cake!

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Mmmm, frosting!

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Bouncing in is jumper with his trademark lips