Fall 2017 Update

Judah 2-up

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

Judah & Giana
Judah’s ”Miracle Kid” Article
At the ”Miracle Kid” Luncheon
Judah and I after his cardiac cath a few weeks ago
The whole fam
Little Tiny Ava

Today’s the Day!


A few weeks ago, Judah had an overnight sleep study done that went well. This morning, we’re taking Judah up to Strong Memorial Hospital. They’ll do a scope to look at his airways and as long as nothing has changed, they’ll take out his trach. The removal itself is nothing more than just pulling it out. They will bandage it up and we will stay the night for observation. The hole should close on its own over the next few weeks and months.

Please be praying that all goes well and we are able to bring home a trach-free kid!

Welp, that went well…

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

Hey everyone! In case you missed on Facebook, Judah does not need the surgery and we are back home after just an overnight stay!

After looking at Judah’s airways, the doctors saw that his airway is much more open than they thought or expected. They concluded that his airway is only 10% smaller than the average kid his age! In our mind, this is a miracle! They decided to use a laser to cut away some “webbed” scarring in a few spots, and also used a balloon to stretch it out as well. They kept him overnight, just for observation.

In a few weeks, we’ll go in for a sleep study where they’ll monitor Judah as he sleeps with his trach “capped” (plugged, forcing him to move all the air around (instead of through) his trach in his airway). If all goes well, we’ll go back into the hospital soon after that, and they’ll take out his trach (takes one second, we switch it out every two weeks), put a bandage over the stoma (hole where the trach was) and we’ll stay overnight for observation. It is the doctor’s expectation that this will all be done before the end of this summer!

This result is far better than we expected! We’re grateful to serve a God that exceeds our expectations! A few days ago, we felt we needed to stretch our faith to believe for more…and God went even further than that!

Thank you all for your prayers! If we could thank you all personally, we would. We’ll let you know how things progress from here!

Much love,
Nick & Liz

Big Things Are Coming

Dantonio Family Photos_Fall 2015-65

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.

Dantonio Family Photos_Fall 2015-76
Fall photo session
Dantonio Family Photos_Fall 2015-22
Judah’s favorite toy
Dantonio Family Photos_Fall 2015-184
Judah with Giana (Gigi), now 16 months
Dantonio Family Photos_Fall 2015-229
After I told him it was time to come in #meltdown
In a wedding

Dantonio Family Photos_Fall 2015-29 Dantonio Family Photos_Fall 2015-210 Dantonio Family Photos_Fall 2015-217 Dantonio Family Photos_Fall 2015-218-Edit Dressed up IMG_2569-2 IMG_2904-2 IMG_3111-2 ILKL5046-2 IMG_3223-2 IMG_3178-2 IMG_3407-2 IMG_3484-2 IMG_3536-2 Judah Fall 2105-25-2-2

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


Hey friends, we’re home and doing great! Full blog post tomorrow.

Much love!

Ready To Go Home!


Hey everyone,

Judah has continued to do very well. So much so that (as long as everything stays the same overnight) they will discharge Judah tomorrow!

Overall, he’s been doing incredibly well. His lungs are in great shape and his body has adjusted to being off Milrinone. They did another echo today and his heart looks about the same as it did last week. Although it’s better than when he first came in, it’s not back to his normal. It’s possible that it could still go back but it’s also possible that it won’t. It’s hard to say at this point what will happen. Even if it doesn’t get better, he could go for years in the condition he’s in. Our cardiologist has said, “You don’t treat the echo, you treat the patient.” So, as long as he’s in good shape and happy, nothing really needs to be done. At this point, having the LTR surgery and getting the trach out is still on the table. We’re scheduled for mid-May but that may need to be pushed out to sometime this summer.

He’s been doing great off the vent during the day (about 12-14 hours) and only goes back on at night. This is how we’ll go home. Thankfully, it’s only for a few weeks while he continues to recover. Since he’s been sleeping so well during the night, Liz and I will be able to handle it without having overnight nurses again.

We are so happy to be going home! We give God glory for Judah’s quick and smooth recovery! Thank you all so much for all your thoughts and prayers. It really means so much to us!

Much love,
Nick & Liz

Great News Should Be Shared!

Judah on a walk with Grandma without the IV pole

Hey friends,

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

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

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

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

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

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

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

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

Much love,
Nick & Liz

Feeling Good and Seeing Progress

FullSizeRender (1)
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.

FullSizeRender (2)
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

Fam Pic at Stronguntitled

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.
Giana Newborn-0336-2
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.


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.


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)

5D3_0168-Blog_© NDP 2014
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