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

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!

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His new favorite face to make…FB-Blog Vacation Pics-4089

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