It’s week 11 and Judah’s good days are becoming more consistent than they’ve ever been! Today we removed his heart leads that he’s had on since he was 2 days old. His rhythms have good for almost this entire time. It’s funny how we came in for heart surgery but have barely talked about his heart since those first few weeks. It’s been a crazy ride.
Liz and I are doing just about everything for Judah while we’re at the hospital. Drawing up meds, giving them through the G-tube, trach care, changing the trach collar, G-tube care, bath time, clothes changes, suctioning. We’re even turning off alarms when they sound because we know what they mean and whether or not it’s something to worry about (which it almost never is). We’ve also been trying to get him used to more “normal” things like laying on the floor and in his bobby pillow. It’s a lot of work but it feels great to be able to take care of him.
Please continue to pray for the right nurses to be available for Judah’s home care needs. We are also praying about a different place to live as our apartment isn’t very big. When you consider having nurses, all the extra things he’ll need, plus the work it will take to get him in and out of our building with all his “gear,” making our apartment work is starting to look a little challenging. We trust that God will provide a new place or the grace to make the one we have work.
We continue to pray and believe for healing in Judah’s body. For his heart, his nerve damage, and his airways. Please believe with us!
Thank you all so much for your prayers, your thoughts and your words. They really make a big difference!
Judah has had a pretty good few days. The beginning of the week was pretty rough as he was throwing up quite a bit. At first it was related to extremely thick mucus that he couldn’t swallow and was too thick to suction out. Then, that seemed to resolve and his throwing up appeared to be food related. Because of all these issues they decided to see if he was ready to tolerate un-skimmed milk. If you’ve been following for a while, you’ll remember back in late November (click here to read that post) we learned that Judah had a “leak” somewhere and wasn’t able to absorb fats well. So we started skimming the breast milk and adding different types of formulas to supplement. Anyway…we’ve been giving him “whole” milk the last few days and I’m happy to report that his “leak” has healed up! Thank God!
Liz and I have been doing a lot of training and teaching this week. It’s been great to learn how to care for his minor but necessary needs. So often we would need to go out and ask a nurse to come help with something but now we can do most everything ourselves. It’s a really great feeling! We haven’t heard anything yet about the home care nurses or anything from the state but we knew it would take a little while.
Once Judah is steadily keeping his feeds down, we will start getting him into more of a routine that will suit our home life. Please pray he continues to digest his food and keep it all down. They’ll be increasing the amount he gets over the next few days and that has sometimes been hard for him.
God has been so good to us over these past 10 weeks. Not many newborns can endure five surgeries in the timeframe Judah has. God has given us peace and the grace to walk through this incredibly difficult time. We are so grateful for our baby Judah and can’t wait to start our home life as a family for the first time.
Thank you all so much for keeping us in your thoughts and prayers. It means so very much to us!
Judah had a pretty good day. It was nice to see some smiles and have some interaction with him! Also, Liz got to hold him without a pillow for the first time in over a month. This should be a trend that continues. We’re are continuing our training for how to be able to care for all of Judah’s needs and thankfully, it’s going well.
Judah has been having a hard time with some very thick mucus. It seems to be too thick for the regular suction to get out, so it pools in the back of his throat until he spits/vomits it out. There’s not much they can do but try to catch it before it happens and use a larger “wand” type suction to get it out through his mouth. Aside from that he is doing pretty good. They came to change his trach out for the first time today and everything looked good. This will be something Liz and I will learn to do regularly for him. It seems easy enough. : )
No update on anything from the state or nurses yet. This will take time.
Please pray that Judah’s body doesn’t create such thick mucus and that his trach incision will continue to heal well. Also, please pray that the training will continue to go well and that things with the state and finding nurses will go quickly.
Thank you all again for caring for us and keeping us in prayer. We appreciate it so much!!
Judah has been doing good since his fever broke two nights ago. Nothing has come back positive regarding any infection, so that’s good news! He had a big day today, it was the first time he’s been out of his bed since they put the trach in on Monday. He was in his swing for a little while and Liz got to hold him for part of the day! He’s seems to be getting back to himself and we’re really happy about that.
Yesterday we had a big meeting with our social worker, respiratory therapist, cardiac nurse practitioner, a representative from the pulmonology department, and the discharge coordinator. We’ve also been meeting with the Clinical Nurse Specialist – all to discuss what it will take to get home. The good news is that Judah will be ready to go home by the middle of next week, it will be everything else that keeps us all here longer.
As of right now, the goal is for us to be home by March. We’re told it will take that long for things to get through the State, line up at home nurses and for us to be fully trained in how to care for all of Judah’s needs — mainly learning all the ins and outs of the ventilator he will be hooked up to. This will include a 24-hour period where we will take care of 100% of his needs (the nurses will only help if there’s an emergency) and also a day trip out of the hospital. As we said before, the thing that will most likely keep us here the longest is finding at-home nurses.
Please pray that we are able to find the nurses we need and are able to pick up the training easily and quickly.
Thank you all so much for following our story and praying for our Judah. It’s been a long 10 weeks but we’re really happy to be talking about going home!
Tuesday and Wednesday were both really great days. Judah was very comfortable, happy, and smiley. Today, however, has been not such a great day. He threw up a few times (which he hasn’t done in a long time) and has been running a fever most of the day. They took some samples to run cultures and other tests to look for any infection. It’s possible he has something simple like a stomach bug or something more serious like the flu that’s been going around. Please pray that Judah doesn’t have any infection or any serious illness. Also, that he would be able to sleep well without any more throw-ups.
Tomorrow we will be meeting with 5 or 6 different people from all different departments to talk about what needs to happen before we can go home. At this point (believing that Judah will be better tomorrow) they believe Judah will be ready to go home in about a week! Sadly, it will take longer than that (possibly weeks) for us to be trained in Judah’s medical care and to find in-home nurses for him.
I’ll update you with those details tomorrow or the next day.
Thank you all so, so much for your prayers through this trying season. Liz and I have truly felt them!
Judah came back up around 5PM with the tracheostomy tube in. When they looked again they found the same problem in one of his bronchial tubes. He is now resting comfortably. We are thankful that the procedure went well and glad we can see his whole face!
For the next week they will keep a close eye on the incision area and the trach tube. He will stay somewhat sedated so he doesn’t try to grab at anything. After that, we’ll start talking about the discharge timeframe. As we said in Thursday’s post, we’ll need to work with our social worker and doctors to line up at-home care for Judah. That could be the thing that keeps us here the longest.
As far as today goes, we of course really wanted them to find no problem at all in Judah’s airways, but that isn’t what happened. We will continue to trust God and, even though we don’t know why He didn’t heal Judah today, we still know He is a good God. We know He has an amazing plan for Judah’s life and can’t wait to see it unfold!
Thank you for believing with us! We ask that you keep believing for God’s hand on Judah’s life as we begin to look towards getting him home. Please pray for a quick and smooth recovery and that God would provide the right nurses for when that time comes.
Judah is on his way down to the OR. As we have stated in previous posts, they’ll be looking at all of his airways to confirm that he does indeed have a part that is weak. It’s our hope that they will find nothing wrong and he won’t need the trach tube!
Judah has had a very good few days and they are still planning on taking him to have his bronchial tubes and airways checked out tomorrow, sometime in the late afternoon. If everything is the same as last week, (as detailed in Wednesday’s post) then Judah will have a tracheostomy tube put in. It has been our hope and prayer that his airways will not look the same as they did last Wednesday and that the trach tube won’t be necessary. We know what we’re hoping for is the impossible, but we also know that, with God, all things are possible. I came across this verse this morning:
“Have faith in God,” Jesus answered. “Truly I tell you, if anyone says to this mountain, ‘Go, throw yourself into the sea,’ and does not doubt in their heart but believes that what they say will happen, it will be done for them.Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. Mark 11:22-24
Our prayer has changed from “Lord, let it be” to “Thank You that it is done”. We have chosen to stand in faith for our baby Judah. All throughout the Bible, God responds to our faith. We ask that you would join your heart with ours and “have faith in God” and believe for the impossible.
Nick and Liz
P.S. We’re very sorry to announce that we can no longer have visitors at the hospital. The flu is the worst the hospital has seen in 10 years, and they of course want to protect patients. This is understandable of course, but a little disappointing, too! Everyone will have to wait for his homecoming to visit Judah!
Judah a good, non-eventful day day. He is tentatively scheduled to have the tracheostomy late-afternoon on Monday. Before they actually put the tracheostomy tube in, they’ll do an exhaustive search into all of his airways and lungs so they are fully aware of what’s happening inside him. It’s our hope and prayer that they will find that a miracle has happened in Judah’s body and there will be no need for the tube. We know that might sound crazy to some of you, but the Bible is filled with incredible miracles, and we believe God is the same today as He was then.
We ask you to join your hearts and prayers with ours as we ask God to miraculously touch Judah’s body.
“Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.” Ephesians 3:20-21
Today the surgeons and cardiologists from Strong, Buffalo, and Syracuse discussed Judah’s case and we now have a plan. They want to wait and do Judah’s second heart surgery when he actually needs it (usually between 4 and 9 months of age) and do the Tracheotomy surgery as soon as next Tuesday the 15th. Liz and I are comfortable with this plan. Again, we’ll have to wait to have the right hospital personnel lined up, so we may not be able to get onto the schedule until Tuesday the 22nd. The recovery time is typically 2-3 weeks and then, finally, we might be able to go home!
Unfortunately taking Judah home won’t be as simple as we were originally hoping. We will need to have at-home nurses to help us care for him as long as he has the tracheotomy tube in. We’re not yet sure what the time requirements will be, possibly up to 16 hours per day. We should know more in the next few days. We’ve been told that finding enough nurses could be the thing that keeps us here the longest, it can sometimes take months. Part of this could be because we don’t live close to the city. Hopefully, we’ll be able to get that worked out quickly.
Liz and I had a much better day today. Yesterday was definitely a tough blow, but God’s grace has been absolutely amazing. We didn’t realize how much better we felt until one of our regular doctors mentioned it. God has taken such great care of us. All we’ve done is looked to Him and asked, and He’s met our needs. He’s such a good God!
At this point, we ask that you would continue to pray for complete healing in Judah’s body. We are preparing ourselves for the next year or so but our hope and prayer is that God would touch Judah and he wouldn’t have need for all the procedures and doctors.
“Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” Matthew 19:26