Big Things Are Coming

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Hey everyone! It’s been a loooong time since we’ve posted anything, but it’s been for good reason–everything has been great! The doctors, Liz, and I were moderately concerned about Judah’s ability to make it through the winter without getting very sick and needing another hospital stay. Thankfully, his health was great all winter. He had a few colds but was able to bounce back in a normal time frame, just like any other kid!

Short Version
Judah is scheduled for LTR (Laryngotracheal Reconstruction) Surgery on June 2nd. There’s now a possibility that Judah’s airway is close enough to the size it should be for his size and age. If that is the case, they will use a balloon and try to stretch his airway to the right size. We would then go home (the same day) with the trach, and be able to take some small steps later on to remove the trach without surgery. If they determine his airway is still too narrow, we will proceed with the reconstruction. This would include taking cartilage from one of his ribs and grafting it into his airway to make it wider, and removing the trach tube. He would remain sedated for about a week to allow for healing. The total hospital stay would be about 2-3 weeks. Scroll down to see prayer requests.

More Details

His Heart
In March of 2015, Judah was very sick and ended up being hospitalized for a few weeks. During that time, the doctors noticed his heart wasn’t pumping as strong as it should. He was put on some medications to help that. They weren’t sure if his heart wasn’t pumping well because it was getting weaker on it’s own, or if it was a result of him being so sick. In the fall of 2015, they found that his heart was pumping about 50% better, but it has not improved since then. We’re very grateful that his heart is in better shape than a year ago, we weren’t sure that it would improve at all. Now that it’s stable, he’s ready for his trach tube to come out.

LTR (Laryngotracheal Reconstruction) Surgery

Trach Tube

Where Judah’s airway is narrowed

Judah has had two major problems, his heart and his lungs. While his heart is in moderate condition, his lungs are doing great. He still has a trach (tracheotomy) tube because there is scar tissue from when he was intubated (breathing tube through mouth to lungs) for the first few months of his life. Having the trach requires frequent care and maintenance from us, and is also restricting on parts of his life–mainly, his ability to speak with more endurance, full strength and volume. Now, I’ll be honest, having a 3-year-old that’s about 40% quieter than he should be hasn’t been the worst thing in the world. ;) But we want him to be 100%! The LTR surgery will do just that.

We’ve been waiting for this surgery for over two years. Since April of 2014, it’s been delayed for one reason or another on four occasions. At times, it’s been very difficult for us. I’m happy to say, we are less than two weeks away from this big step!

LTR surgery is a pretty major one. They will remove the trach tube, take a piece of cartilage from his ribs, shape it, and graft it into his trachea, to widen and strengthen it. After the surgery, he’ll be sedated for about a week while it heals. which might be the hardest part for us. Not having our crazy 3-year-old around won’t be easy, but it will be worth it. Hopefully, after a few weeks, we’ll be on our way home with a brand new (and much louder) kid, without a trach! There is also the possibility that the graft won’t “take” and we’ll have to wait until next year to do the whole thing over again.

So, we’ll go in next Thursday not knowing if he’ll have major surgery and be sedated for a week, or if we’ll be bringing him back home. Either way, we are moving towards removing the trach tube!

Prayer Requests
Please be praying that:
– Judah will remain healthy and that nothing will deter the surgery
– His airway will be large enough that he won’t need the surgery
– If he does need the surgery, that it would go perfectly and the graft would “take”

Thank you all so much for your thoughts and prayers over the years and through this next phase! We’re continually blessed by your heart for Judah and for us. I’ll leave you all with some photos and videos from the past year or so.

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Fall photo session

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Judah’s favorite toy

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Judah with Giana (Gigi), now 16 months

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After I told him it was time to come in #meltdown

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In a wedding

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Judah singing the theme song to his favorite show…Paw Patrol
“Paw Patrol, Paw Patrol, we’ll be there on the double…”

BIG NEWS: No More Vent & Decannulation Scheduled

Snow Swinging

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

August Update

I know it’s been forever since I last updated you on Judah, but things have been going really well and there hasn’t been much to report.

He has been doing so good! He is now up to 18 lbs and 29 inches long. He has 5 teeth in and 4 more on the way. He’s been sitting up by himself for over 3 months now and can even support his weight while standing (with a little help). Judah loves throwing his toys around. His facial expressions seem to multiply as he gets older. Liz and I keep asking each other, “Where did that face come from?”. We are now allowed to have him off the ventilator completely for one hour and forty minutes twice a day. We’ve been adding on ten minutes each week for a couple months now. He’s doing so good with it! He is consistently making noises. It’s taken him a long time to learn how to get air around his trach. Overall it’s really been a great summer. No problems at all.

The one major thing we’re still dealing with on a regular basis is him not keeping food down. This happens 8-12 times day. Sometimes it’s because he’s got a lot of mucus in his throat and he’s learned that throwing up solves that problem. Once the trach is out, that side of the issue should pretty much resolve itself. (Because the trach is a “foreign” object in his throat, his body actually creates more secretions.) The other part of it is that it seems like his body doesn’t like the feeling of food in his belly. This is actually fairly common among kids with HLHS. Sometimes the problem originates in a part of the brain that is underdeveloped. Other times it’s because the heart can’t supply enough red blood cells to the stomach. The stomach then can’t do it’s job, so the body rejects the food. We’re not sure exactly what the problem is with Judah. We’ll have to wait and see how things play out. We have also noticed that he will make himself throw up. Whether it’s by putting his finger down his throat or dry heaving until something comes up. We’ve been working hard to teach him not to (which has been pretty successful) but it definitely seems like there is actual desire behind it.

The next big thing is Judah’s heart catheter and bronchial scope on September 24th. This will be an overnight stay at Strong. They’ll have to put him under anesthesia, and then keep him over night to make sure he comes out of it alright. They will be taking an in-depth look at his heart function to see when he’ll be ready for the next heart surgery. Typically, the second heart surgery for HLHS kids, called the “Glenn” is done around 6 months old. Judah is almost 10 months but because his blood oxygen levels have remained normal, (for him) he hasn’t needed it yet. We are anticipating the surgery will be in October or early November.

They will also be taking a look at his lungs to see how they have developed since he was trached back in January. Our hope is that Judah’s lungs will have developed enough that we can start to look at getting the trach out. If his lungs have improved completely, they will most likely still wait until after he recovers from his heart surgery to take the next big step.

Our prayer requests remain pretty much the same:

1. That Judah would keep his food down. That whatever is causing him to throw up would no longer be an issue.
2. That his bronchial tubes would grow strong and large so he would have no need for the trach and vent.
3. Complete healing in his heart.

Thank you all so much for praying and believing with us! Below are a few recent photos of Judah.

Much love,
Nick & Liz

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Big Boy!

Judah is 7 months!

Hey friends,

Things have been going really well overall. Judah is learning to play and move and is even learning how to make sounds around his trach! We love getting to see him figure things out and interact with us more and more each day. His little voice is the greatest! As I mentioned yesterday on Facebook, Judah has been having a lot of trouble keeping his food down. (Just a reminder, he is still getting a soy based formula through his g-tube.) Since he was born, it has always taken a while for his body to adjust to changes in the feeds. About 3 weeks ago we increased the amount we were giving him (per doctor’s orders). Since then, he’s been throwing up during or after almost every daytime feed. Typically what happens is, he will cough on mucus, then gag, and throw up. Although this isn’t really that new, it seems now that it has become a learned behavior. Meaning, we believe he is doing it purposely because he knows it makes him feel better. Obviously, this isn’t good for him or us. Despite this, he has still been gaining weight and is now up to 15.6 lbs! He is finally gaining weight at the rate he should be!

Yesterday we took Judah to two (scheduled) doctor appointments. First was his G.I. (gastrointestinal) appointment. They were very pleased with his weight gain and how he looked. We talked about his issues with keeping food down and we decieded to try to give him continuous feeds overnight and make his daytime feeds smaller. The reasoning for this is that he rarely throws up overnight (because he’s sleeping). So we agreed to try and give him more at night and less during the day, so that when he is throwing up, it won’t be as much. This way, he will be still getting the same total amount each day. We’ve only done it for one day so we’ll wait a least a few days before we decide if it’s working.

Next was his appointment with his cardiologist. This also went really well. Judah especially loved when the nurse and I did a joint beatbox session for him. (He LOVES the beatbox!) Based on Judah’s oxygen saturation levels (78-82), his doctor believes the next several months will look like this: July – regular appointment; August – overnight visit where they will run tests to see if he’s ready for the next surgery; September – surgery (the Glenn). We actually thought his would happen a lot sooner but that’s most likely not the case.

We found out that during the overnight stay for testing, they will also look at his bronchial tubes with a scope to see how his airways are doing. If they look significantly better, they may look to start to get him off the trach and vent after he recovers from the Glenn. We would really like to see it be 100% better by that point and remove the trach before the surgery.

Prayer Requests
1. That Judah would keep his food down. That whatever is causing him to throw up would no longer be an issue.
2. That he would continue to grow.
3. That his bronchial tubes would grow strong and large so he would have no need for the trach and vent.
4. Complete healing in his heart.

We believe our God does miracles. We believe he is a loving God who loves to heal his children. I know some may find that hard to believe but we have resolved to stand on the truth of the Word of God. We believe He is able. We ask that you would believe for our Judah along side of us.

We want to thank you all so much for all the support you’ve given us over these past seven months. We are continually amazed by all of you! We thank God for watching over and keeping Judah and we thank God for all of you.

Much love,
Nick & Liz

TUESDAY! TUESDAY! TUESDAY! (And Today)

Judah’s first nap in his own crib

Hey everyone,

It’s official, we are headed home on Tuesday! Our nursing is lined up and Judah is ready! Today, Judah got his first visit to our new home. We were able to take him home for the day while we got some last minute things set up for him. He did well the whole day which helps us feel better about taking him home for good.

We are really excited about starting a new chapter in this story and are so grateful for God’s goodness to us and to Judah these past four and a half months. He has brought us peace in the most fearsome times and hope in the darkest of hours. Without Him, we truly would not be standing today. He is good and He is real.

Thank you for joining your hearts with ours since the very beginning. Your thoughts and prayers mean the world to us!

Much love,
Nick & Liz

Doing Well. Going Home Soon!

Hey everyone!

Judah has been doing really well! We just got through his first two teeth coming through! He wasn’t very happy about it, but he doesn’t really have a lot of say in the matter. :)

We mentioned that we were aiming to go home on April 1st, and that looks like it might actually happen! If not then, definitely the following week. We’re happy to say that we finally have all our nursing in place! All that’s left is some training for the nurses and that should happen this week. It’s exciting and scary at the same time. We will have been here for almost 5 months. It’s crazy to think about. When we left for the hospital with Liz in labor, we expected to be home in a few days. And here we are so many months later. We’re so glad that Judah has been doing so well and we can’t wait to get him home with us!

We would ask that you pray for Judah’s belly. He has always had a hard time keeping food down. Most of the time it’s because of mucus. When he coughs, he sometimes ends up gagging so hard that he throws up his formula. Please pray that his body allows him to keep his food down so he can grow!

Thank you all so much!

Much love,
Nick & Liz

Here is a photo of me and Judah without him being connected to the ventilator. We’ve found that he can do just fine for a few minutes at a time. So grateful for that!

Discharge Date

Hey everyone,

Judah has been doing very well. We have our normal ups and downs, especially since he is teething, but overall everything is good. The best guess as to what was happening with his respiratory issues last week was that he was getting a virus but got over it fairly quickly. We haven’t had any significant breathing issues in over a week now. Thank God for that!

It’s been a very busy few weeks for us. We’ve been going home on the weekends to pack up our things, paint the new house, and, this past weekend, get everything moved into the new place. We came back to Rochester on Sunday to be with Judah. Monday evening we headed back to Warsaw and spend the day on Tuesday cleaning out our old apartment and fixing up the new place. Today we started our “24-hour stay” – which is a requirement before you can go home with a patient that has as many needs as Judah does. They suggested we stay longer than that to get a “true feel” for what it will be like with Judah at home. Basically, this just means that the nurses stay out of the room (except in the case of an emergency) and we take care of all of Judah’s needs. For us, the 24-hour stay is really more of a formality. This won’t be much different for us, as we do everything while we’re here during the day. The only difference is sleeping at the hospital and waking up every three hours to start his feeds. Judah has been sleeping through the night for quite some time now. So Liz and I will be with Judah until Friday and then we’ll head back to Warsaw for the weekend to unpack.

Nursing is coming along very well. We just need to fill one more overnight slot and we’ll be  able to bring Judah home! Once the nurses positions and schedules are confirmed, it will still take some time to get all of the paper work in order and for the nurses to go through some orientation. Right now, our expected discharge date is April 1st.

It’s been a long four months but God has been so faithful to us. Without question, I don’t know how we would have gotten through this time without Him. The peace He gives in the midst of the storm truly goes beyond our understanding. In times where you feel helpless, what can you do but trust God?

We’re grateful for Him and we’re grateful for you. Thanks for following our story and praying for our Judah!

Much love,
Nick & Liz

Better Day

Hey everyone,

Judah had a good day. No respiratory issues today. He also seemed a little more like himself. Thank God! He is still having some problems keeping food down.

Please pray we are able to find the right formula for Judah. Let’s keep believing for God to touch Judah’s body and breathe healing into every part of him!

Much love,
Nick & Liz