Post Fontan Surgery

Hey friends, things have been going well since Judah’s surgery this past Thursday. I’ll catch up those of you that haven’t seen my Facebook posts. If you just want the latest news you can skip down to the break.

After about a 7 hour surgery, we talked to the surgeon, who had a great report–everything went as planned. That night, Judah was extubated (the breathing tube was removed that went through his mouth, needed during surgery) without any problems. His first words were, “I was so brave.” Then he tried to flex his muscles –– perfect! It was great to see a tiny bit of personality.

The first night Judah hardly slept. He didn’t seem to be in a lot of pain, he was just awake most of the night. Yesterday, Friday, was a pretty calm day. Medically, he’s doing well, but he’s uncomfortable and cranky most of the day (which is to be expected). They removed an IV line, so that made things a little easier.


Last night he slept well (which is great) and today he’s back on a normal wake/sleep schedule. It’s been a similar day today, and we’re still seeing medical progress. He’s been weaning off a few medicines and is able to eat and drink. They took out his arterial IV line from his wrist and we saw a HUGE change in Judah. He’s talking, asking questions, playing a little, and overall much more himself. We’re VERY happy about that. We miss our goofy little guy. He was also able to be helped out of bed and into a chair for a few minutes. It’s amazing what he’s able to do only 48 hours after major open-heart surgery.

Tomorrow, we hope to get him up walking around a bit and Monday we’ll continue getting more mobile.

Our biggest concern at this point is that he has some fluid in his lungs. He has a really hard time coughing due to the pain his chest and torso are in. It’s important that he is able to clear all the “junk” out so that it doesn’t settle in his lungs.

We SO appreciate the support from you all. Whether it’s thoughts, vibes, or prayers, it means so much to us! We always ask for prayer because it’s what we believe in. We’ve seen it and felt it in action. We’ve lived it. It’s a unique feeling when you can feel the prayers of others, actually holding you up in times like these. We’re grateful to God for His grace and strength over the past few days. He’s been so good to us and to Judah.

Looking forward to reporting more good news!

Much love,
Nick & Liz

Spring 2018 Heart Surgery – The Fontan

Selfie family photos always look great, right?

Hey friends! We’ve known this day would be coming since we first learned of Judah’s condition in November 2012. The Fontan is the third in the series of three heart surgeries required to “bridge” Judah to a transplant later in life. The first surgery was done 5 days after he was born and the second at one year.

This Thursday, we’ll bring Judah in for the surgery. It will last 6-8 hours and, if all goes well, he’ll be groggy but awake Thursday evening. In-hospital recovery time is 2-4 weeks and we’ll be staying at the Ronald McDonald house since we live about an hour away from Strong.

This is completely new territory for us since we haven’t had other kids with us during a major surgery or hospital stay. Now, our girls are 3 and 1, and Liz is 4 months pregnant with our second boy. We’re not sure how things will go and how we’ll balance everything yet. A lot of it will depend on how Judah is doing.

It’s going to be a difficult week, so please keep us in prayer. Specifically, for Judah and the doctors on Thursday (surgery at 9AM). For Liz and I during the surgery as it’s one of the hardest times as parents. For our girls as their lives will be flipped upside-down.

On one hand, we know it will help him and he’ll be able to do more, but it’s never easy to go through a surgery day and recovery time. We wish he didn’t need the surgery, but he does and it’s something we can’t go around—we have to go through. God has been so faithful to us with each step, we know He will continue to be who He is: A faithful and good God.

Thank you for standing with us during this time. I’ll be updating here and on Facebook. If you want updates sent via email, you can subscribe on the right side of this page.

Much love,
Nick & Liz

Here’s a page that describes Judah’s condition and has a few short (animated) videos of the three surgeries.


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.

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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

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

Today’s the Day!

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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…

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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

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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…”

Home!

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

Much love!

Ready To Go Home!

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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!

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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!

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(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

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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