We want to wish you all a Happy Thanksgiving! We hope you and your family have a great day!
Judah is doing well. They are still trying to “thin” him down by giving him Lasix. They said “His diapers weigh more than him!” – which means it’s working. We were told today that they may wait until Saturday to close him. They just want to make sure he’s totally ready for the procedure.
Please continue to pray for Judah to keep thinning and that he would remain stable so they can close his chest up.
We wanted to put all the information about us and Judah in the same, easy to find, place. Creating a blog made the most sense. I took all of the posts from Facebook since we found out about Judah and turned them into posts in the blog. You’ll notice that there is a date and time for each of the posts that the blog publishes and then I added the original post date from Facebook.
Starting today (as you’ll see below) all the updates will be posted here and I’ll only post a link on Facebook. If you look to the sidebar on the right, you’ll see a place where you can subscribe to these posts by entering your email address. I assure you, you’ll only get notifications that I’ve posted on this blog, and nothing else. I don’t expect any problems, but if there are, please let me know.
Over the next few days and weeks I’ll be tweaking and updating the blog. As a web and graphic designer, I can’t tell you how much it pains me to use a “stock” template, but I wanted to get this up and running as soon as I could.
Thank you all for caring so much about us and our little Judah!
Judah did well over night and they are “on the fence” about closing his chest this afternoon. The deciding factor is whether or not he is “thin” enough – meaning, has his puffiness gone down enough. If they don’t do it today, they’ll most likely do it on Friday.
Please pray for wisdom as they make this decision.
Evening Update (not on Facebook):
The doctors have decided to wait until Friday to close up Judah’s rib cage. They felt like he need a little more time to lose some of the fluids in his body. Things were very smooth today and he did really well. All of his levels are good and they are continuing to give him Lasix which will prevent his body from absorbing too much salt, allowing the salt to instead be passed in his urine. This will help with getting rid of the fluid that he needs to before they can close him up.
With leaving his chest open there is an increased risk of infection. Please pray that this will not be a problem and that there would be no complications from now until the procedure.
Thank you all so much for all your prayers and support, it truly means so much us. You’ve blessed us in ways you can’t imagine and we will be forever grateful!
Originally posted in the morning on 11/20/12 on Facebook.
Judah had a good night! They said he’s doing “remarkably well” and they are surprised at how “thin” (not puffy) he is considering how much fluid they gave him yesterday.
If you’ve been following along, you’ll remember this was a specific prayer request. So we thank and praise God for answering our prayers!
Originally posted in the evening on 11/20/12 on Facebook.
Thanks again for all your prayers! Today was a good day. It was low key, which the three of us needed! As I said earlier today, they said he’s doing “remarkably well” and they are surprised at how “thin” (not puffy) he is considering how much fluid they gave him yesterday. This is a direct answer to prayer! He stayed “thin” all day. In the morning they will talk about when they will attempt to close him up again. It could be as soon as tomorrow.
Let’s pray that God would give the team working on Judah wisdom as to when the right time is to close his rib cage. Also, that Judah would continue to get “thin”, that he would remain stable and that there would be no infection (this becomes more of a risk the longer his chest is open).
Liz and I are doing well, we were both able to get some rest today and feel like God is really supplying all our needs. He’s a good God and we love Him!
Judah’s chest closure operation will be at 10 AM. This seems more like a scheduling issue and not a health related decision. Please be praying.
Originally posted late-morning on 11/19/12.
All closed up! Dr. Alfieris: “It went better than I could have ever imagined. He’s doing great.” He also said “The fact that he was ready for this procedure 3 days after the surgery is extremely encouraging.” Praise God!
Originally posted mid-afternoon on 11/19/12.
We’ve had a set back. About 2 hours ago they told us they had to open him back up because there was a lot of drainage coming out of his chest tube. They couldn’t find the reason for the extra bleeding so they decided to leave his chest open and use the same type of Gore-Tex patch they did before. A few minuets ago the drainage hasn’t slowed enough for their comfort so they are opening him up again right now.
Please pray they find the problem and are able to stop the bleeding/drainage.
Originally posted in the evening on 11/19/12.
I posted earlier today that Judah’s chest closing procedure went extremely well, and it did. However, later this afternoon, we had a few set backs. Let me say here that he is okay and stable. After a few hours of doing very well, they noticed a lot of drainage coming out of his chest tube and his color was bad so they decided to open him back up. Once they did they found there had been a significant amount of bleeding and a large clot. It was something that was happening very slow so it was missed earlier today and that’s why he seemed fine for a few hours. They were able to clean him out, but they had to leave his chest open with the same type of Gore-Tex patch he had before. About an hour after they patched him, they noticed his chest seemed very full and decided to take the patch off. Once they had him open they still couldn’t find a place where any significant amount of bleeding was coming from. They did cauterize a few spots that were leaking and cleaned him out again. After watching for a few minutes he seemed to stay fairly dry so they decided to patch him back up with the Gore-Tex. The good news is the problem wasn’t his heart, it wasn’t his lungs or even that his body couldn’t take the procedure, it was just that he was bleeding.
Since everything calmed down he has been improving steadily. His chest fluid has been much lighter in color and thinner and has been draining well. His blood pressure and heart rate are at good places. The doctors said that he is pretty much back to where he was yesterday – almost like today never happened. They said he’s not any worse off than he was yesterday, which is really great news.
They closed his rib cage with wires around 11am – extremely successful.
Around 3pm they had open him back up and keep him opened with the Gore-Tex patch.
Around 5:15 his chest was visibly full with fluid so they took off the patch to investigate.
After cauterizing they re-applied the patch and he has been stable since.
The plan is now to wait a few days and try to close his rib cage up again. This is not something that is unusual for a newborn that’s been through what he has. They told us in the beginning that this would be a roller coaster and that it will constantly be three steps forward, two steps back.
As you can imagine, today has been emotionally exhausting. We’re doing pretty good now that he’s stable but it’s been a long, taxing day. Please keep Liz and I in your prayers.
As far as Judah goes, we need to pray that he remains stable and the fluid from his chest decreases and stays light and thin. Also, because of some of the meds they are giving him, they expect him to get very puffy over the next day or so. They won’t be able to close his chest until most of it drains, so let’s believe for the puffiness not to be an issue.
We still declare that God is good and we are so grateful that Judah is doing well. We will continue to believe and contend for healing.
Thank you all again for your prayers and support, it means the world to us.
This was originally posted on 11/18/12 on Facebook.
Today was another good day here at Strong Hospital. One week ago God blessed us with our first child and has continued to bless us each day by His grace. The head heart surgeon (Dr. Alfieris) came to see Judah and was “thrilled” with how he was doing. His body has continued to react well to the surgery and his fluids have remained low. All his numbers and levels are also where they need to be which means he is tentatively scheduled to have his rib cage closed tomorrow. There is a much lower risk with this procedure but still some risk. They will most likely perform the closure right in the PICU (Pediatric Intensive Care Unit), where he’s been since we got to Strong. If they do, they will clear part of the wing of visitors and parents and turn it into an operating area. My understanding is that this will take about an hour or so to do.
Once they remove the Gore-Tex patch, (which I hope someday he thinks is super-cool) they will clean out his chest of any extra fluids and make sure everything is doing what it should be. Next, they’ll tie his rib cage together and then apply a “VAC Dress” (Vacuum Assisted Closure). The VAC Dress is a piece of black foam that covers the wound and is sealed with an adhesive drape. This will improve local circulation, remove any debris and help the tissue and skin to heal more naturally, from the bottom layer up. It could take up to 3 weeks for his incision to fully heal.Please pray that he will continue to react well to the surgery and his fluids stay low. As far as closing his chest goes, please pray that there will be no complications, that his body will handle this next procedure, and that God would be with the surgeons as well. We are still believing for a miracle to happen in Judah’s heart. The diagnosis was clear: the doctors can ONLY help his heart, they can never fix it. He will always be a cardiac patient, he will most likely need a pacemaker and possibly even a heart transplant. But we believe that God can do anything, we believe God has a plan and purpose for Judah’s life, we believe for complete healing. We will not back down from that cry. His healing may not come until his 40’s but we will believe until there is no longer a reason to believe. He has given us so much grace and so much peace, I truly do not know what we would have done with Him. He has become our savior in a totally new way.Once again, I can not express how much we love you all and how you have encouraged us this past week. We owe you each a debt of gratitude that we can never repay. Thank you. You have made us feel loved and supported in the darkest of hours.
Nick & Liz
Also, I would like to thank my wife for the great job she does editing all of my grammatical errors and incomplete/run-on sentences before I publish these posts. We make a great team! :)
We had another good day! Baby Judah is progressing well. All of his numbers are where they should be and there is very little swelling after the surgery. They took him off the drug that keeps him from moving and he did great!
He’s able to move around little, his eyes are able to open and even his little hand can hold on to our finger. What a blessing to make eye contact! With the very thin Gore-Tex patch over his chest you can actually see the heart pumping. The nurse let me put my finger on the heart (which was still under the patch) and actually feel his heart beating. Pretty amazing! The goal right now is for him to be well enough for them to close his chest back up on Monday. Typically, the time period for this is 3-7 days after surgery so him being on the front end of that is great. In order for them to do this, a couple things need to happen. First, his body needs to continue to react well to the heart surgery (which really means we want nothing to happen). Second, because of the operation, there are a lot of extra fluids around his heart, so we’ll need those to drain out. If he is still stable and the fluids are very low then we should be in good shape.
Liz and I are doing well. We’re still recovering from the past week but we’re getting there. We’ve got a long, bumpy road ahead of us so please continue to pray for grace and strength for us.Thank you all so much for your prayers and comments. It truly helps strengthen us during this trying time. God has been so good to us and continues to carry us. Maybe in time we’ll be able to thank you all in person; until then, know that we are grateful.
Originally posted mid-afternoon on 11/16/12 on Facebook.
SUCCESS!! We just heard from the OR that Judah’s surgery went very well! His heart is responding the way he should! We will be able to see him shortly! I’ll update you with more details a little later.
Originally posted in the evening on 11/16/12 on Facebook.
Today was a good day! It was stressful and scary but God answered our prayers for a good surgery! Everything went as planned and he is recovering very well. They described him as “perfect”, “outstanding” and “a rock star” – all to say that everything in his body is doing what it should be doing and maybe even a little better than normal. It’s hard to believe that contractions starte
d only seven days ago. It feels like it’s been weeks since then! God has been so good to us. We are so incredibly grateful for how all of you have cared for us and our little one! I can’t put into words what it was like watching our newborn baby boy turn the corner on his way to surgery, not certain if we’d see him again. What a relief when the good news came. Today was the probably the biggest hurdle but we have many more to come. I will be updating you all in more detail in the days to come when I have more strength. For now, we need pray that his heart and body respond well to the surgery and that his stats continue to improve, particularly in oxygen levels. They left his rib cage open (it’s covered with a medical gortex type material) so that his heart and surrounding organs have extra room while the swelling dies down. The goal right now is for him to be healthy enough for them to wire his rib cage back together on Monday.I’m working on getting a blog up so that all the info can be in one place, so look for that soon.Thank you for carrying us these past few days, it means the world to us. We praise God for His goodness and grace over our lives and for bringing baby Judah through safely.
Things are going well! Liz and I were able to meet with the head surgeon this morning before the operation. His name is Dr. Alfieris and he is one of the best if not THE best in the country for this type of surgery. We’re a little over half way through and the word from the OR is things are going very well. Please continue to pray for Judah. Even after the surgery it will be a long road.