Post Scope

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Judah disregarding the “no heavy lifting” request by the doctors

Hey everyone,

Thank you so much for your prayers today! Overall, Judah is doing very well. He’s already back to the mischievous ways his 20 months of age would suggest.

Judah was in the operating room for about 2 1/2 hours this morning. First, he had the circumcision, which went great. Second, he had a bronchoscopy. We were hoping they would find that Judah’s airways were open, but, unfortunately, that’s not what they found. Back in April, they dilated (or stretched) the area that was narrowed by scar tissue. Today, they found that area to, again, be narrowed. Bottom line, the stretched part didn’t stay stretched. That means that the trach stays in until he has surgery to remove the scar tissue.

The surgery is called an LTR (Laryngotracheal Reconstruction). They take a piece of cartilage from the ribs and place it in the airway to make it wider and stronger. We knew this was a good possibility. However, what we weren’t prepared for was that the area around his trach (below where the narrowing is) has begun to soften. Our doctor said this was because of the trach being in for so long. The surgery was planned for September, but now they want to wait until the spring. The main reason for this is that (after today’s discovery) the area that would need to be strengthened is now bigger and would require more cartilage. So we’re not sure if his ribs would be mature enough by the fall to harvest the necessary cartilage.

Needless to say, it was disappointing and frustrating. We’re feeling a lot of emotions right now and have lots of questions for the doctors that we’ll be following up with.

Although we’re frustrated we still choose God. It’s hard, but we know He is good and we choose to trust Him through this. Judah is His and we will rest in the fact that He holds Judah in the palm of His hand.

We ask for your prayers for us and Judah during this recovery time. Thank you so much for caring for us over these past 20 months!

Much love,
Nick & Liz

The Summer So Far

Like a boss

Eating like a boss

Hey everyone, I know it’s been a long time since we’ve posted anything but life has been great since getting back from vacation. Judah has been doing so well! He has been eating – which is a HUGE step for him. Right now, he takes in about half of the calories he needs by mouth. He’s also been taking all of his medication orally as well. He’s been growing and gaining weight at a great pace. He has also completely stopped throwing up – another HUGE thing! With the trach (tracheostomy tube), it’s difficult for him to make a lot of sounds but he’s been signing and slowly learning more words. All in all, we’re so happy and blessed that Judah is doing so well!

One of the biggest and hardest things we’ve had to deal with since bringing Judah home has been having people in and out of our home. Thankfully, we’ve been blessed to have some really great nurses and therapists help us care for him since we left the hospital 15 months ago. Since the spring, Judah has become much easier to care for. When we went on vacation in April, we realized how much we loved just being able to be together as a family. So, after many conversations, we decided to let go of all overnight nursing, leaving us with a few hours during the week. Although it’s been a big change, we absolutely love it. We are so grateful that Judah has come so far and we can be in the place that we are.

As many of you know, a few months ago Judah had a scope done. They wanted to see if there were any obstructions in his upper airways. They found some scar tissue that would inhibit his breathing if the trach were not there. While they did the scope, they also stretched the area where there was scar tissue. On Monday, we will go back to Strong and they will do another scope to see if the area has remained stretched or not. If it has, they will most likely remove the trach and we would stay a few days for observation. If it hasn’t remained stretched, Judah will have surgery in September to remove the scar tissue and then the trach would come out. Obviously, our hope and prayer is that we will bring him home next week, trach free.

Since they will be putting him under anesthesia for the scope, they will also circumsize him right after the scope. This would have been done at birth but since there were so many issues right away, this wasn’t important.

We ask you all to stand with us and believe for the scar tissue to not be an issue and we will be able to bring Judah home without a trach.  And more than that, we are believing God for a new heart. He is able. Please also pray that everything will go smoothly and there wouldn’t be any complications.

Thank you all so much for following our story and standing with us over the past year and a half. It means the world 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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The Trach Remains

Hey everyone,

Thank you so much for all the prayers, comments and shares. Judah is in recovery and doing well, but things have taken a pretty sharp turn from what we were expecting to happen today.

During the bronchoscopy they did find scar tissue in his upper airways. It was our understanding that if that was the case, they would take him directly into surgery and remove the scar tissue today. This was not the case. We’re not sure if we misunderstood or if we were given wrong information, but Judah wouldn’t even be able to undergo that procedure until the fall or even a year from now. We try hard to ask a lot of questions and make sure we have a good understanding of everything that’s going on, so we’re not sure where the breakdown in communication happened. This procedure is a “bigger deal” and will require some planning as well as him being a little older.

While he was “under,” they used a balloon to dilate the area where he has scar tissue. At the moment, the area has been stretched to an “acceptable” diameter. Whether or not it will remain stretched, we’ll have to wait to find out.

In 6-8 weeks they will do another bronchoscopy to see if the area has remained stretched and open, or if the scar tissue in that area has narrowed his airway again. If his airway remains stretched, we will likely take steps to remove the trach while we’re in the hospital at that time. If his airway is narrowed again, we will begin planning the surgery to remove the scar tissue and reconstruct his airway. The reason we would have to wait until the fall or a year from now is because they would need a piece of cartilage from his ribs to help reinforce his airway, and that cartilage won’t be mature enough to “harvest” until around age 2. The doctors are confident that the scar tissue is from the breathing tube he had for his first few months, and not something congenital.

So, the trach will remain in and little will change for us in the near future. We’re a little disappointed, but so thankful to not be taking any steps backward! We will continue to trust in our God.

I apologize if my Facebook status was misleading. I was just trying to keep it simple and let you all know Judah was doing okay.

We are heading home now. We will update again tonight if there are any changes.

Thank you for all your prayers!

Much love,
Nick & Liz

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

Judah Wears Blue 4 Ben

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Hey everyone, we know it’s been a long time since we posted on our blog. Part of the problem was that we were having some issues with our website. All of that has been cleared up and we’re happy to be back.

I’m just going to give a very brief update on Judah because we really want this post to focus on someone else. Judah has been doing incredibly well! A few weeks ago we got the green light from his pulmonologist to begin aggressively taking steps back from the ventilator. Right now, he is only using the ventilator for 4 hours, every other night. Which means, he’s off the vent completely for 44 consecutive hours at a time. Next week we will have another appointment and at that point most likely have the vent taken away forever! Our hope is still that he will be able to have the trach taken out sometime in April.

The main thing we want to talk to you about today is a little boy named Ben. This story has been circulating Facebook and has found it’s way to so many different circles. It’s really amazing. I even saw a story about him on the news this morning. Ben is an adorable 4 year old, has an identical twin brother named Jack, and a 2 year old sister named Megan. Ben has also been diagnosed with a very aggressive form of brain cancer, Stage IV Glioblastoma. Just in the last 6 weeks or so, he has undergone brain surgery, countless tests, chemotherapy and radiation treatment. All of that has been unsuccessful in slowing the growth of his brain tumor. In fact, it has tripled in size in just a week. The doctors have said that they have never seen anything like this.  At this point there is nothing more the doctors can do to help. Mostly likely, Ben only has weeks left. We encourage you to read the whole story on a blog that Ben’s mom Mindy has started here: Blue4Ben.com.

First, we ask you to pray for a miracle for Ben. It is the only chance he has left. So many of you have spent time praying for us and for Judah and we ask you to now turn those prayers towards Ben and his family. We believe our God is able to do miracles. Please stand with the Sauer family during this incredibly difficult time.

Second, we want to let you know about a benefit event for Ben this Sunday March 9th at 500 CrossPoint Pkwy, Getzville, NY 14068, 4pm-8pm. You can see all of the details at Blue4Ben.com. Many of you gave to us financially while we were in the hospital with Judah. Not having to worry about money was such a blessing to us. It allowed us to focus on Judah and on each other. We would love to see the same happen for the Sauers.

Third, please share Ben’s story and information about the benefit. You can share our blog but it would be better to share it from Ben’s blog.

Thank you for you prayer and support for us! Please visit Ben’s website here: Blue4Ben.com

Much love,
Nick, Liz, & Judah

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

Discharged & Home (completed)

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Goodbye Strong!

[Sorry, I accidentally published the post before I finished it. Here's the completed post.]

Hey everyone,

I posted on Facebook yesterday that we had been discharged mid-afternoon. I apologize if some of you that only read the blog didn’t know until now.

We made it home and have been enjoying being here so much! As soon as we walked through the door, Judah seemed to realize he was home and perked up a bit. Here’s a photo taken last night in his own jumper.

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Thank you to everyone that has been following us and praying for us! It really means so much to us!

We will continue to update you as news arises.

Much love,
Nick & Liz

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