March 2015 – Judah's Heart

March 30, 2015

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

March 26, 2015

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

March 20, 2015March 20, 2015

Latest News & Hospitalization

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.

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.

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