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

Latest News & Hospitalization

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Hey friends, I’ve been meaning to post something for a while now, but life has been pretty crazy.

Baby girl!
First things first, if we aren’t Facebook friends, you may not know that we had a baby girl! Giana Nicole was born on February 6th. She and Liz are both healthy and doing great! Judah loves his baby sister and always wants to hold her and give her kisses. We’re so grateful for this new life and can’t wait to watch her life unfold.
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Judah
Short version: Judah developed a virus/pneumonia about 6 weeks ago. As time went on, he stopped sleeping well, became increasingly irritable, his appetite took a nose dive, and his face got really puffy. Last week, an echo showed that his heart was enlarged, not pumping as well, and that he had a leaky valve. His doctor adjusted and added some meds, hoping things would get better. We brought him to Strong on Wednesday after he was having some trouble breathing. Since then, he’s been put back on the vent and given more meds to help the problem. Today, he’s doing much better. The hope is that the heart problem is a result of the virus and not a new problem in itself. Skip down for prayer requests.

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Detailed version: After Judah’s overnight stay at the hospital in early February, he did really well for about a week. Then he started showing signs of being sick again. He was moody and always wanted to be cuddled. Over the past 5 weeks, he has slowly, but steadily, gotten worse. About a week ago, his cardiologist did an echocardiogram (sonogram of the heart), and they found that his heart is a bit swollen, not pumping as good as it should, and one of the valves is leaky. They changed his meds and sent him home. The hope was that the virus (pneumonia or whatever it was) is what put the stress on his heart, and not that his heart was already starting to have trouble and the virus exposed it and made it worse. In addition to that, over the past two weeks, he hasn’t been sleeping well at night. He was up crying almost every hour. Since he was born, he’s always been a great sleeper. He usually slept through the night and always woke up happy, so this is a complete 180°.

 

On Wednesday, my wife and mom noticed that he was working hard to breathe. When I looked at him with “fresh eyes,” I saw it, too. With his heart not working right, him not getting much rest and now working harder to breathe, we decided it was time to bring him to the hospital. After being in the ED at Strong for a few hours, he was admitted to the Cardiac PICU. Knowing he needed help, this was best case scenario for us. We spent a total of 6 months in the PICU with Judah, so we’re comfortable here and know most of the staff well. Wednesday night was pretty rough. Judah was up almost every 30 minutes and always needed me (instead of the nurse) to be up with him.

 

Thursday morning I was able to talk with the doctors here and come up with a short term plan. We decided that it would be best for him to be put back on a ventilator (a machine that does the breathing for him). This was a hard thing for us because we spent so much time and effort getting him off the vent a year and a half ago. Liz and I talked about this option before we came, so when they suggested it, we knew it was the right call. It didn’t take long to see that we were right. As soon as the vent was connected, Judah’s heart rate came down, his blood oxygen level went up and his breathing eased. Taking away the work of breathing will help his heart immensely. He slept a bit better last night. We hope this trend will continue so his body gets the rest it desperately needs. We’ll see what the help of the vent and some cardiac and diuretic meds do for him over the weekend before reassessing.

 

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Since this morning, he’s really started getting back to being himself. It’s been so hard to see our always happy and goofball of a kid so upset and sad all the time. Seeing his smile and mischievous face does us so much good. We’ve been able to get into the Ronald McDonald House that’s about a mile from the hospital. I will take the nights with Giana at the house and Liz will stay over with Judah. Then I’ll take the daytime at the hospital while Liz stays back with the baby. Hopefully, we’ll be able to be together for most of the evenings. We want to be careful letting Giana being in a place with so many germs.

 

Specific Prayer Requests
-That the fluid in his lungs will clear out
-That his current heart problem would be the result of the virus and not a heart issue in itself
-That his heart function would return to it’s “normal”
-That he would sleep through the night and his body would get the rest it needs
-Complete healing in his whole body

 

We have always believed that God is good and that His grace is sufficient for all of life’s ups and downs. Our beliefs have not changed. We believe God has healed, can heal and will heal. We have chosen to lean into Him and His goodness through this tough time.

 

Thank you all for standing and believing with us!

 

Much love,
Nick & Liz

Discharged! (2/3/15)

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Judah playing this morning

We’ve been discharged! This is exactly what we hoped for!

Judah did very well overnight and this morning. The dose of Prednisone helped a lot. The thought is that he either recovered and then relapsed or he caught a different virus after he got better. Overall, Judah seems much better and is getting back to himself. He’s been put on a longer and stronger course of Prednisone. We’re hoping this will help him get 100% healthy. Now, we’re just hoping to get a good night of sleep before baby girl arrives!

I’ll also mention here that Liz and the baby are both doing great. We had some extra testing done and she is perfectly healthy! We can’t wait to meet her!

Thank you all for praying and supporting us. It means a lot!

Much love,
Nick & Liz

Pneumonia

Judah watching videos of himself in the ED

Judah watching videos of himself in the ED

Hi everyone, I know it’s been a looooong time since we’ve posted anything. Mostly, it’s because not too much has happened since the summer. The biggest news is that we’re expecting our second baby…on Thursday. Yep, Thursday. Baby girl Dantonio is fully grown and should be ready to make her appearance any day now.

Up until last week Judah has been doing great. He’s been growing, talking, playing – it’s been amazing! I think that’s one of the reasons there haven’t been any updates on the blog. We have really enjoyed just being “normal”.

About a week ago, Judah was diagnosed with pneumonia. He was put on Prednisone, Amoxicilin and Albuterol, and by Saturday, he was doing very well. Yesterday evening, he started to show signs of sickness again. This morning, we took him in to his doctor and she wanted him to be seen at Strong.

They compared his X-rays from last week to today and they actually look a little worse today. Thankfully, about half the time he seems fine and happy. But he’s also very whiney and easily upset. They were on the fence about sending us home, but to be safe, we all decided that he should stay, at least over night. Also, since Liz is due on Thursday, we didn’t want to take the chance of Judah getting worse and for Liz to go into labor at the same time.

He’s been put back on a steroid and a stronger antibiotic. Hopefully, tomorrow we’ll all feel good about him going home and we’ll be discharged.

We knew staying a day (or more) was a good possibility, so we came with a bag with what we needed for a few days. We are also making arrangements for Liz to have the baby here if that should happen. Our hope is that we will be sent home soon and Judah will get well before the baby comes.

We ask for your prayers and your faith. We have always believed that God is bigger than the problems we face. This isn’t a surprise to Him. We know He hears our every cry and prayer. We know His grace will see us through!

Thanks for believing with us!

Much love,
Nick & Liz

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

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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