It’s official, we are headed home on Tuesday! Our nursing is lined up and Judah is ready! Today, Judah got his first visit to our new home. We were able to take him home for the day while we got some last minute things set up for him. He did well the whole day which helps us feel better about taking him home for good.
We are really excited about starting a new chapter in this story and are so grateful for God’s goodness to us and to Judah these past four and a half months. He has brought us peace in the most fearsome times and hope in the darkest of hours. Without Him, we truly would not be standing today. He is good and He is real.
Thank you for joining your hearts with ours since the very beginning. Your thoughts and prayers mean the world to us!
Judah has been doing really well! We just got through his first two teeth coming through! He wasn’t very happy about it, but he doesn’t really have a lot of say in the matter. :)
We mentioned that we were aiming to go home on April 1st, and that looks like it might actually happen! If not then, definitely the following week. We’re happy to say that we finally have all our nursing in place! All that’s left is some training for the nurses and that should happen this week. It’s exciting and scary at the same time. We will have been here for almost 5 months. It’s crazy to think about. When we left for the hospital with Liz in labor, we expected to be home in a few days. And here we are so many months later. We’re so glad that Judah has been doing so well and we can’t wait to get him home with us!
We would ask that you pray for Judah’s belly. He has always had a hard time keeping food down. Most of the time it’s because of mucus. When he coughs, he sometimes ends up gagging so hard that he throws up his formula. Please pray that his body allows him to keep his food down so he can grow!
Thank you all so much!
Nick & Liz
Here is a photo of me and Judah without him being connected to the ventilator. We’ve found that he can do just fine for a few minutes at a time. So grateful for that!
Judah has been doing very well. We have our normal ups and downs, especially since he is teething, but overall everything is good. The best guess as to what was happening with his respiratory issues last week was that he was getting a virus but got over it fairly quickly. We haven’t had any significant breathing issues in over a week now. Thank God for that!
It’s been a very busy few weeks for us. We’ve been going home on the weekends to pack up our things, paint the new house, and, this past weekend, get everything moved into the new place. We came back to Rochester on Sunday to be with Judah. Monday evening we headed back to Warsaw and spend the day on Tuesday cleaning out our old apartment and fixing up the new place. Today we started our “24-hour stay” – which is a requirement before you can go home with a patient that has as many needs as Judah does. They suggested we stay longer than that to get a “true feel” for what it will be like with Judah at home. Basically, this just means that the nurses stay out of the room (except in the case of an emergency) and we take care of all of Judah’s needs. For us, the 24-hour stay is really more of a formality. This won’t be much different for us, as we do everything while we’re here during the day. The only difference is sleeping at the hospital and waking up every three hours to start his feeds. Judah has been sleeping through the night for quite some time now. So Liz and I will be with Judah until Friday and then we’ll head back to Warsaw for the weekend to unpack.
Nursing is coming along very well. We just need to fill one more overnight slot and we’ll be able to bring Judah home! Once the nurses positions and schedules are confirmed, it will still take some time to get all of the paper work in order and for the nurses to go through some orientation. Right now, our expected discharge date is April 1st.
It’s been a long four months but God has been so faithful to us. Without question, I don’t know how we would have gotten through this time without Him. The peace He gives in the midst of the storm truly goes beyond our understanding. In times where you feel helpless, what can you do but trust God?
We’re grateful for Him and we’re grateful for you. Thanks for following our story and praying for our Judah!
Judah had an okay day. Early this morning around 5AM, he had another “episode” where he had trouble breathing. Thankfully, they didn’t have to go through all they did last night with bagging and changing the trach. They just turned up his oxygen and he eventually recovered. By 9AM he was full of smiles and being his happy self. Throughout the day he did pretty well although he didn’t quite seem himself. After the incident last night, they gave him fluids through an IV instead of feeding him until about noon today. He did good most of the day but tonight he threw up most of his 9 o’clock feeds. We’re not really sure why he didn’t keep his food down, hopefully it doesn’t become a trend.
At this point no one is really sure why he is having some respiratory issues. They did put a PICC line in him today. This allows quick access for IV fluids (if and when needed) and also an easy place to draw blood for testing.
Please be praying that his respiratory issues are diagnosed and resolved quickly without any harm to him. We are believing God for a quick end to these issues. Also, please pray we’re able to find the right combination of calories and volume of formula so that he gets what he needs, but also doesn’t throw it up.
Thank you all so much for following our story and praying for our Judah!
The last 24 hours have been more up and down than we’ve had in a while. Last night, Liz and I spent most of the night with Judah because he was having a lot of thick mucus-y spit ups. As the night went on, his spit ups lessened to the point where we felt comfortable leaving around 6AM. We got some sleep and checked in on him around noon and he had been doing well since we left. Once we got back to the hospital, we played with him, gave him a bath and dressed him. Around 6:30 this evening I was holding him and he was pretty inconsolable – this isn’t too uncommon for him. Many times he has gas or the trach is sitting funny or he’s teething. We noticed that his lips were looking blue-ish and he wasn’t just upset. He was visibly having a hard time breathing. The first thing we did was look at his numbers on the monitor, mainly his blood oxygen level. That was good so it was strange that he was having such a hard time. We asked a nurse to come in a take a look and she also thought it was strange. After examining him for a few minutes she felt it was time to call for another nurse’s opinion. She came in and took one look at him and called for help. She wasn’t “buying” the numbers, they just didn’t match how he looked. Within 20 seconds we had about 10 people in the room ranging from attending doctors to respiratory therapists to nurses and a few resident doctors.
Their first thought was that the trach was plugged again. After this was ruled out they tried changing the trach and bagging him. (See yesterday’s post for a little more clarity on plugged trachs and bagging.) We could see that none of these things were really working. They gave him some Fentanyl which is used as a pain reliever and anesthetic. This, along with some fluids, seemed to have helped him calm down. Eventually, Judah settled down and has been doing good since then.
At this point, there is no obvious reason for what happened. They are currently running tests and cultures on everything. We won’t get results back for another 24-48 hours. The answer could be as simple as he was in pain and worked himself in a hyperventilating mess or it could be he has a virus or something else “brewing”.
Please be praying that Judah doesn’t have any more “episodes” and that what happened today (1) isn’t anything serious and (2) doesn’t happen again. Pray that if there is anything behind this, that it’s found and dealt with quickly.
We have found that one of the keys to getting through a situation like ours is finding the positives in everything. Today we learned that we do know when he’s alright and when he’s not. And although we hope we never have to deal with a situation like this while we’re home, we’re glad we got to see how it should be handled while we’re still in the safety of the hospital.
We are still in the middle of packing/painting/moving into our new home, interviewing nurses and working with many different people on insurance details and home care supplies. All this on top of taking care of Judah’s needs. Please keep us in prayer as this is all a lot to be doing at the same time. Honestly, we’re doing well. God has given us the peace and grace to be able to handle all of these things. He is still good!
We continue to believe for complete healing for Judah. We believe God is able! Thanks for praying and believing with us!
I planned on giving you a detailed update from the past week but instead I’m just going to ask you to pray for Judah tonight. He’s had a rough few days. Over the weekend he had a lot of trouble keeping his food down. This could be because of a few reasons. The most likely reason is because we changed his formula a bit last week. This afternoon and tonight he seemed to do better with Pregestimil, which is very easy for babies to digest. Also this afternoon, Judah had a very thick plug (of mucus) in his trach which caused his blood oxygen levels to drop and the nurse had to “bag” him. (This allows the nurse to manually give him breaths. This gives the nurse the ability to actually feel if there is any resistance when she squeezes the bag. For more info on “bagging”, click here: Ambu Bag.) Thankfully, his airways were clear and the nurse was able to put him back on the ventilator. At this point, (now that his airways are clear), his oxygen saturation levels should have come back up right away. They did not. Because they didn’t, they had to put an IV line in and put heart monitor leads on his chest. After about 30 mins his sats come back up and have been good since then. They would like for him to bounce back right away after a plug like that so we’re hoping the next time is better.
Although he has been able to keep his food down, he has had tons of extremely think mucus. So thick that he can’t cough it up so he ends up gagging and throwing it up. It’s possible that he’s starting to get a cold and that’s the source of the extra mucus. They did take an x-ray this afternoon and, thankfully, that looked clear.
On top of all of this, he’s starting to teethe.
Please pray that Judah is able to continue to keep his food down and that the mucus thins out and is able to be dealt with normally. Also, please pray that he does not have a cold or any other sickness. Something as simple as a cold can be very dangerous for Judah. Let’s believe for a good night and no sickness for him!
We thank God for his grace and peace through this season. He has truely kept us during this time. We continue to put our trust in Him and hope that you do as well.