Hey everyone! I know it’s been a really long time (over a year!) since we last posted but that’s because Judah has been doing great!

Life Update
In case you didn’t know, we’ve been a family of 5 for about 5 months now. We welcomed Ava Jane on May 1st. She’s the perfect addition to our family. Both Judah and Giana love her immensely and they (usually) love being Momma’s helpers. Judah sings a song he made up for her that goes, “Lit-tle, tiny Ava, lit-tle tiny Ava”. It’s cute and reminds us of his sweetness.

Judah was chosen as one of this year’s “Miracle Kids” for Golisano Children’s Hospital in Rochester. This included a news interview (to air this fall) that Judah “hammed” it up for. :) My photography business continues to grow and expand, for which we’re grateful for. Liz now leads our local MOPS (Mothers of Preschoolers) group at our church and I couldn’t be more proud of her.

Trach Tube
In July 2016, they removed Judah’s trach tube – something we’d been waiting years for. Since then, he has done really well. The place where the tube was still remains partially open. We hoped it would have closed on it’s own by now but it still has a bit to go. Since it’s very low maintenance and it doesn’t seem to bother Judah, we’ve agreed with the doctors to continue to let it close on it’s own.

His Heart
The reason this page exists is because of Judah’s heart condition. He was born with HLHS, a serious heart defect. (You can go back to November 2012 if you’d like to read our story from the beginning.) There is currently no “fix” for his condition, only a series of three surgeries to bridge him to a heart transplant. Judah has had two of those surgeries so far, the Norwood at 5 days old, and the Glenn at 1 year. Next would be the Fontan around age 5. Since he will be 5 in November we’ve begun to talk about the Fontan.

Before I get to where we are now, I want to go back to March of 2015 when Judah was hospitalized with pneumonia. It was a scary time. He’d been fighting a cold for months and it finally landed us in the hospital for a few weeks. The sickness did a bit of damage to his already weak heart. Whether his heart already beginning to fail allowed him to get sick or the sickness did the damage, no one was sure. I’ll never forget when one of the cardiologists told me he did not believe Judah’s heart would recover, and that Judah would probably not be a candidate for the next surgery (the Fontan), and that he may need a transplant much sooner than originally thought. It was hard to hear. We would just have to wait and see.

After 3 weeks in the hospital, Judah was healthy enough to go home but his heart still wasn’t working the way the doctors hoped. As the months went by, Judah continued to grow and do well. Truthfully, if you didn’t know who he was, you wouldn’t know he was functioning with only half of a heart and stood at the doorstep of death more than once. It’s amazing.

About every six months Judah would have an echocardiogram (sonogram of the heart) and after each one the report was the same: his heart function is improving. Each time, it was incredible news! Last month, Judah had another echo, blood work, and a cardiac catheterization (an in-depth look at the heart function). All of the tests showed that he has improved dramatically and some (blood) levels and numbers are that of a “normal” kid. He’s doing so well, that, after the tests, the doctors talked together and all agreed that he is healthy enough for the next surgery! We consider this a miracle!

Judah will be scheduled to have the Fontan next Spring. Although surgeries and hospital stays are always difficult, we are grateful to God for bringing Judah so far. He is good and faithful!

Thank you all so much for your faithful prayers over the years. In the darkest of days, we felt not only God’s presence but the prayers of many holding us up. When we were too weak to stand, you stood for us. For that, we will be forever grateful.

Please be praying for Judah’s health from now until the surgery in the Spring and that the opening that the trach tube left would close completely. From the beginning we have been praying and believing God for complete healing in Judah’s body. Please believe with us!

Thank you for following our story over the years, it means the world to us!

Much love,
Nick & Liz

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

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.

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

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

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

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