Judah Wears Blue 4 Ben

Blue4Ben w Logo

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

Happy New Year!

Hey everyone,

Happy New Year! We feel so blessed to be able to celebrate this year at home with Judah, and are so grateful that he has remained healthy! We thought that with a new year starting, it would be a great time to update you all on what’s been going on with Judah.

He has been doing great! Aside from the few weeks following his heart surgery, Judah has been off the vent for 12-14 hours during the day since late summer. When he goes to bed, we reconnect his trach to the vent for the night. At a follow up cardiology appointment in December, we expressed our desire to be as aggressive as the doctors feel comfortable to get the trach out. His doctors said that at the first of the new year, they would consider him officially recovered from his surgery, and would feel comfortable with us beginning the process of removing the trach! So, next week, we’ll be taking him to his pulmonologist (lung doctor) to take the first step in taking the trach out. That first step is decreasing his vent settings so that he will be doing more work at night. If all goes well, the trach will come out and we’ll come home without the trach or vent! We anticipate this to happen sometime in early March.

It has been an unbelievable year for us. Like all of you, we’ve had our ups and downs and are looking to 2014 to be an awesome and exciting year. God has sustained us in the darkest of hours and it’s our prayer that all of you would find the same goodness and love that we found when we looked to Him. God is good.

Thank you all so much for your prayers and support over all this time. It really is amazing to us! Please keep Judah in your prayers as we begin “go after” getting the trach out. We believe he’s ready and can’t wait to start moving forward.

We’ll leave you with a few pictures from the last year.

Much love,
Nick & Liz

First few hours. 11/11/12
First few hours. 11/11/12
36 hours after birth. Shortly after diagnosis.
36 hours after birth. Shortly after diagnosis.
Judah looking unimpressed with his new friend. 12/3/12
Judah looking unimpressed with his new friend. 12/3/12
Tape free face! A few days after his trach was put in. 1/19/13
Tape free face! A few days after his trach was put in. 1/19/13
Tongue out! 2/19/13
Tongue out! 2/19/13
The hood picture. 3/13/12
The hoodie picture. 3/13/12
Home! 4/17/13
Home! 4/17/13
Judah and his cousin Levi. 5/5/13
Judah and his cousin Levi. 5/5/13
Judah in his swing! 8/28/13
Judah in his swing! 8/21/13
Happy baby! 8/28/13
Happy baby! 8/28/13
Overnight prep for heart surgery. 9/23/13
Overnight prep for heart surgery. 9/23/13
Getting ready for the big day! 10/29/13
Getting ready for the big day! 10/28/13
Recovering. 11/7/13
Recovering. 11/7/13
Birthday presents! 11/11/13
Birthday presents! 11/11/13
Judah playing in the snow!  12/18/13
Judah playing in the snow! 12/18/13

Discharged & Home (completed)

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Goodbye Strong!

[Sorry, I accidentally published the post before I finished it. Here’s the completed post.]

Hey everyone,

I posted on Facebook yesterday that we had been discharged mid-afternoon. I apologize if some of you that only read the blog didn’t know until now.

We made it home and have been enjoying being here so much! As soon as we walked through the door, Judah seemed to realize he was home and perked up a bit. Here’s a photo taken last night in his own jumper.

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Thank you to everyone that has been following us and praying for us! It really means so much to us!

We will continue to update you as news arises.

Much love,
Nick & Liz

Judah Turned One!

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From one of Judah’s favorite nurses

Hey friends,

Well, it’s been a very up and down couple of days for us. His fever would come and go without any explanation as to what was causing it. He had been on antibiotics since Friday and getting regular doses of Tylenol and Motrin, and the fever would still spike through. Because all of his tests and cultures kept coming back negative, everyone has been at a loss. Today, we decieded to stop the antibiotics and the fever has been gone since late morning. Whether it’s a coincidence or a direct result, no one’s sure yet. We just hope it doesn’t return.

In other good news, Judah turned one yesterday! It’s been an unbelievable year for the three of us. One year ago today they gave us the news of Judah’s heart defect. Needless to say, it completely wrecked us. We’re so grateful that he has made it through so many hardships. Just the fact that he was able to sit on our laps tonight and watch a movie with us fills our hearts with joy.

More good news

  • His drainage was low enough over the weekend that they removed the chest tube yesterday morning. He’s happy about that!
  • He passed his swallow test (pharyngogram) with flying colors! He’s also started drinking (a very small amount of) water from a sippy cup and baby food from a spoon! This is a HUGE step that we didn’t expect to happen until winter-spring. He’s not taking a lot yet but the fact that he wants it is amazing!
  • The amount of times he throws up during the day has dramatically dropped since surgery and since switching formulas.

Even though we’re still here we have a lot to be grateful for. Please continue to pray that the fever does not return and Judah has a good night. If that happens, we start to talk about going home.

Thank you all so much for sticking with us through this past year. Your words, prayers and gifts have blessed us beyond what our words can say. We’re so grateful for what God has brought us through and that He has never left our side.

Thank you!

Much, much love,

Nick & Liz

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“Reading” a birthday card
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From Aunt Alicia and Alex
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Sweeeeeet potatoes!
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More?
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A drum to beat on (or eat) from Grandma
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Cookie cake!
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Mmmm, frosting!
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Bouncing in is jumper with his trademark lips

Return of the Fever

Hey everyone,

On Tuesday Judah wasn’t feeling great and had a fever. They ran tons of tests and cultures, but none of them came back with anything to speak of. He was put on two broad spectrum antibiotics and he turned around pretty quick. He was doing well so they took him off the meds. This morning Judah had a fever again and he’s been pretty cranky all day. Despite getting Motrin and Tylenol, his fever hasn’t broken all day. They’re currently running more tests and cultures but we won’t know much until tomorrow. His white blood cell count is normal, which is strange, because if he had an infection that number would be high. Right now, no one is really sure what the issue is so we are putting him back on the broad spectrum antibiotics.

We were looking at the very real possibility of going home on Monday, (which happens to be Judah’s 1st birthday) but now that’s in jeopardy. Above all, we want him to be well but we would also like to bring him back home.

Please be praying that his temperature would drop and that whatever is causing the fever would be healed.

Thanks so much!

Much love,
Nick & Liz

Photo Blog!

Hey everyone,

Judah is doing very well! It looks like he’s over whatever he had and his rash is mostly gone! The drainage is still dropping so everything is looking great right now.

Please continue to pray that there would be no other complications and we would be able to bring him home soon.

I’ve put together a bunch of pictures from our time here. They’re in chronological order. Enjoy!

Much love,
Nick, Liz, and Judah

Here are a few from the day before his surgery.Judah_Glenn_1-6112 Judah_Glenn_1-6116 Judah_Glenn_1-6122 Judah_Glenn_1-6138 Judah_Glenn_1-6153

Getting ready for surgeryphoto (23)

Post-op. Very puffy!Judah_Glenn_1-6180

Grandma!Judah_Glenn_1-6188

Playing with mommy!Judah_Glenn_1-6192 Judah_Glenn_1-6195 Judah_Glenn_1-6245 Judah_Glenn_1-6264

Big boy!Judah_Glenn_1-6276

Watching TV with momma!Judah_Glenn_1-6325 Judah_Glenn_1-6329 Judah_Glenn_1-6332 Judah_Glenn_2-6377 Judah_Glenn_2-6382 Judah_Glenn_2-6440

Aunt Mary!Judah_Glenn_2-6455 Judah_Glenn_2-6473 Judah_Glenn_2- Judah_Glenn_2-6506 Judah_Glenn_2-6513 Judah_Glenn_2-6607 Judah_Glenn_2-6615 3 pics Judah_Glenn_2-6654 Judah_Glenn_2-6674

Possible Infection

Hey everyone,

Just a brief update. Judah was pretty crabby throughout the day and it now looks like he may have an infection. This comes as no surprise because of the close proximity of the trach and the incision site on his chest. Antibiotics were started this evening and they have taken all kinds of blood work and samples. We should know more details over the next few days. At this point they fully expect him to respond quickly to the antibiotics and be back to normal by Thursday. He’s also been very itchy. He had a bad rash at the end of last week that has largely cleared up but he’s been itching around his drainage tube site and trach area a lot. We’re not really sure why but we would love it if it wasn’t an issue.

Please be praying for the infection to be healed and his itchiness to subside. Our God is able.

Much love,
Nick & Liz

Hello Enfaport II

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Hey everyone,

If you were following our blog last year, you might remember this blog post about Enfaport. The problem then is the same problem now: a chylothorax. Basically, until this heals (in about 6 weeks), his body can’t handle a diet that has fat in it. We know this is a problem because the drainage from his chest tube is cloudy instead of a yellowish-clear. Yesterday, we switched him to Enfaport, a nonfat formula, and we are already seeing an improvement. This really isn’t a big deal and it shouldn’t keep us here much longer than we already expected.

At this point, our largest obstacle in getting home is his chest tube. The color needs to pretty much be clear and the amount that comes out needs to be consistently very low. He has been decreasing pretty steadily so we are grateful for that! Our other big concern is infection. So far, it’s been good but the risk is high for someone that has a trach so close to the incision. We, along with our nurses, have been extremely vigilant about his chest dressing but it doesn’t take much to cause a problem.

Please be praying for a clearing up (in color) and a drastic decrease in the amount of drainage from his chest. Also that there would be no infection or any other complications.

Judah is very much back to his happy self. We’re so happy about this! We stopped his round-the-clock doses of tylenol and he has done great. We thought it would be weeks until he was back to himself but it’s only taken a week! We’re very grateful for such a happy baby.

Thank you all so much for your prayers! They mean the world to us!

Much love,
Nick & Liz

Thursday Night Update – Still Good!

Hey Everyone,

Judah is doing well. Yesterday they took his art (arterial) line out and today they took the internal jugular line out that was in his neck. That just leaves his chest drainage tube and an IV line that’s in his arm.

He is progressing very well. Each day the swelling (which is normal) goes down and he seems to be (slowly) returning to himself. Today we had him out of bed and playing on a mat on the floor. He didn’t like it very much but it’s good for him. :)

We started feeding him through his g-tube as well today. Not very much to start but we will continue to work up to full feeds over the next few days.

The only issue we’re having is he seems to be having an allergic reaction to something. He has a pretty angry rash around the areas where they’ve either cleaned with a medical solution (like Betadine) or used some sort of tape or adhesive. We all agree it’s not something from a medication. Right now he’s getting Benadryl regularly but it doesn’t seem to be getting rid of it. We will talk with the team in the morning and hopefully figure something out.

I would say we’re actually ahead of schedule in terms of when we’re going home. We know nothing is guaranteed here but we’re very grateful to God for where we are.

Prayer requests:

  • That Judah would continue to progress and be able to handle the increase in food
  • That his allergic reaction would subside
  • That the doctors would have wisdom in what to do at every step with Judah
  • That there would be no complications and we would be able to bring Judah home soon

Thank you all so much for your thoughts and prayers. They mean so much to us!

Much love,
Nick & Liz

Tuesday Update: Doing Well

Hey everyone,

Judah is doing very well! He’s been mostly sleeping (thanks to some meds) since he came up from surgery yesterday. He opened his eyes a few times this afternoon but not for long. Everything is going well. We removed the breathing tube and put him back on his regular trach. Other than that there isn’t much to report. Things are progressing normally for what he’s been through.

Please continue to pray for a quick recovery, no complications, no infections and wisdom for our doctors and nurses.

Liz and I are doing great. Since he’s been asleep since yesterday, we have been able to catch up on sleep ourselves and we’re feeling good. Thanks for your prayers!

Much love,
Nick & Liz

Here’s a photo from yesterday morning that I thought I’d share:

Judah in Gown for Post
Judah getting ready for surgery!