Life at Home

Lauren here! 

We have officially been home for a week and a half and man, life has been such a whirlwind. To be honest, coming home was scary. Judah had barely been post-op five days and they wanted us to...leave? [I mean, we had been living in hospitals for two weeks, but it still felt a little soon.] Regardless, the nurses and doctors answered all of our questions on how to care for Judah at home and we moved out of the hospital (not kidding, it really did look like we were living there). 

Judah has recovered better than we could have ever expected. The first few days at home were a little rocky, but for the most part everything has been great. Justin and I feel like we were born to be nurses [okay - that's a lie. But we do enjoy using the little medicine syringes to give Judah his medications] His incision area has healed SO WELL. I swear it looks like he had surgery two months ago instead of two weeks. He is finally eating like normal and chunking up every day. He will remain on some heart medications for the next month or so to help with his blood pressure, heart function and fluid retention.

We had a full day of doctors appointments early this past week and his doctor is very please with how he is healing. He truly is our little miracle baby! We even got to stop by to see our PICU family on our way out of the hospital to see some of our favorite nurses and doctor [they were an absolute God send our first week at KU]. 

In an attempt to bring back some normalcy into our lives, we are trying to enjoy the rest of our summer (see adorable pool pics above) and catch up on some much needed sleep. 

We are incredibly thankful for the support we have been shown the past few weeks. It brings tears to my eyes to see how well loved and cared for our little family is. God is so good! This will probably be the last update on this blog, but I will be starting my own within the next few weeks if you would like to keep following along with our family's journey!

A [Good] Surprise!

This morning Judah slowly began retaining his food, and the staff gave him some antacid for his stomach to help with digestion. They also gave him a new med to help control his high blood pressure. 

And then around noon, as the team began looking over all of his tests, they decided he was good to be RELEASED TODAY! 

This was sooner than anyone was expecting, and a testament to his recovery. By 4 o'clock little Judah was DISCHARGED and the whole family headed home! 

Obviously this is end of the beginning for him, and he still has a lot of recovery ahead, but his first heart surgery and hospital stay is complete. 

As of right now, Lauren and Justin would appreciate some time to recoup and rest, as well as appreciate your understanding that Judah cannot be around a lot of people yet at this point in his recovery. Again, they are ever so grateful for your faithfulness in prayer during the past two weeks, and they will let everyone know when they are up for any visitors, and appreciate you looking out for and caring for them yet again in this way. 

Lamentations 3:22-24

"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, 'The Lord is my portion; therefore I will wait for him.'"

New Room

Today Judah was able to move out of the Pediatric Intensive Care Unit and into the Transitional Care Unit! 

He is, however, struggling to keep food down. If he continues to empty his stomach they may have to place a feeding tube in the morning. Please pray for this specifically, because if he can start retaining food they won't have to endure the envasiveness of a feeding tube. 

 

Overall he's been a trooper, but he is starting to feel the pain of the incision more as his pain meds are being tapered off.  Lauren and Justin continue to feel your prayers and support and thank you all for the ways you've helped this during this time.

In their arms

Today was a good day:

They were able to take out Judah's pacing wires, chest tubes, and central IV lines today so that Lauren and Justin could finally hold him. Judah also ate an ounce of breastmilk today-- the first time he's eaten since Thursday pre-surgery. 

He is still sore, and a little "out of it", due to some heavy pain meds that he must remain on for a little bit. They are also trying some new blood pressure medicine because they can't get it to stay at a comfortable level without it going to high. However, everything seems to be moving in the right direction as far as recovery is concerned. 

They would like to transition him out of the PICU and into TCU [transition care unit] sometime tomorrow. While this is a good move for Judah, the rooms are smaller and only Lauren or Justin will be able to stay with him at night, so they are trying to figure out what that will look like. 

If you are interested in helping them with food for the duration of their day, I [Kelsey] have figured out a way that we can do this for them from wherever you are located! They said they will plan on still eating a meal in the cafeteria, but that another meal would be a blessing to them not only as it saves them some expenses, but also because it won't be hospital cafeteria food :). If you would like to help out with this, please email me at kelsey.irwin @ gmail.com and I will give you instructions! Thank you in advance for being willing to participate in yet another way to help support Lauren, Justin, and Judah during this time.

Breathing Tube Out!

Starting this morning, they slowly took Judah off of sedation and then were able to remove the breathing tube. While under sedation, they had to be very quiet and calm around him, with limited touch. And so today, after he was extubated, Lauren and Justin were able to hold his little hand for the first time post-surgery! A huge blessing in that little grasp. 

It is still crucial that no infection develops as he steadily recovers. 

Hopefully by tomorrow sometime we will have set up a way for us to provide meals for them occasionally during their stay so they can have some other options besides hospital food. Stay tuned if that is something you would like to help out with.

Post-Surgery Day

Overall, Judah is doing well post-recovery. He is still intubated and on oxygen, and therefore they have kept him sedated.  Right now they are monitoring his temperature very closely, has too much fluctuation could be a sign of infection. He's at high risk for infection because of all of his openings.  So right now they are working on pain control and temperature. Once they feel like this is being managed well, they hope to take the breathing tube out. This could possibly happen this evening, but if not tonight, then by tomorrow morning. 

This afternoon he seems to finally be responding to the medicine to drain fluid from his body. It took awhile to find the right dosage and convince his body not to fight it, but this is good progress. 

Lauren and Justin just continue to ask for your prayers for Judah's recovery. They feel they are at the right place and are being well taken care of, but he has a lot ahead of him as far as monitoring goes. Pray also for Lauren and Justin. They are exhausted. They were finally able to get a little nap in today which was a small victory. Pray that they would be able to endure and be alert for all the information they are receiving and still be able to advocate for Judah in the best way possible. 

Also, they want everyone to be able to enter into this with them as asked that a picture of him be shared so others can see his reality right now: 

Pray on, warriors!

The End of Surgery Day

Lauren and Justin have been reunited with Judah! 

They were able to meet with the surgeon, and he was very reassuring and said that he was pleased with how everything went. They are praising God that Judah is healed, and now praying fervently for his full recovery. 

They have been amazed at the care Judah [and they!] are receiving at Cardinal Glennon. 

Judah's levels are currently stable and nurses and doctors are diligently monitoring him and trying to make sure his medications are at the right amount to keep him comfortable. 

He will remain on a breathing machine until at least tomorrow, and will remain sedated until they can take it out. 

Please pray that he can keep his blood pressure and heart rate steady over the next 24 hours, and for good rest for all after this very full day. 

Surgery Day: another update

Lauren and Justin received another update from the operating room: 

They were able to do the FULL repair. Judah is now OFF of the bypass machine and his heart is beating again on its own. 

After the repair they did another echo and, from what the doctors can see, everything is working correctly. They are currently finishing some "typical" surgical procedures and then they will stitch him up. 

After everything is finished in the OR, they will transition him into the PICU and let Lauren and Justin know when they can go see him. This will be a difficult thing, Lauren says possibly one of the tougher parts of the whole process. 

Please join them in praising our God for a successful repair and continue to pray for recovery to go in Judah's favor, and for Lauren and Justin as they reunite with their son.

Surgery Day: update

The OR has given Lauren and Justin a few updates: 

They took longer than normal to start because they needed to do one more echo to make sure of a few things. This set the schedule back just a little bit. At this point, the incision has been made, Judah is on a bypass machine, and they have started the actual repair. 

He will have a few hours of surgery before they close him up. 

In the meantime, Lauren and Justin were able to tour the PICU [Pediatric Intensive Care Unit] and the room that will be Judah's [theirs] after the surgery. They have met his nurse, and were very reassured by how wonderful she was, while also giving them realistic expectations. 

At this point they are still unsure if they will have access to the Ronald McDonald house. 

Surgery Day

Judah was moved back to surgery at 7 a.m. this morning. 

There will be about two hours of prep, then three or more hours for actual surgery. 

Lauren and Justin will get to then join him in recovery, which will not be until this afternoon sometime. 

Yesterday was a very long, hard day. Today will be as well. They truly feel your prayers, and the presence of God in the midst of this. 

Please continue to pray.

Arrival

Judah [and Lauren and Justin] have arrived at Cardinal Glennon in St. Louis. The rain slowed them down a bit, but Judah slept a lot of the way and did well. Pre-operation procedures have begun.

Thank you for your continued prayers.

Welcome to Baby Judah Updates!

Hello friends and family. 

As many of you know, Lauren and Justin have been at the hospital [KU Med Center] with Judah since last Friday morning when they brought him in for observation after he showed some more drastic signs of his heart condition [tetralogy of fallot]. On Saturday the medical team decided to start him on some medication to hold him off until they could schedule his surgery, and he would need to remain in their care until that time. 

Lauren and Justin have been overwhelmed by everyone's support and concerns via messages and calls and emails. After talking with them, we decided one central location where updates could be posted would be the best way to serve everyone at this time. 

Lauren and Justin deeply appreciate all the support and prayers, and it means the world to them that you are thinking of them and concerned about Judah during this time. They simply do not have the capacity to contact everyone right now, so please be patient with them and just check here for updates before contacting them if at all possible. 

As of Tuesday, June 27th, the consensus from Judah's heart doctor and the staff at KU Med is to transport him to St. Louis [SSM Health Cardinal Glennon Children's Hospital] Thursday morning, as Children's Mercy in KC could not get a surgery scheduled before the weekend. 

They will be expecting them at Cardinal Glennon and will begin all of the pre-operation details at the point of arrival, with the goal that surgery will take place on Friday [no specific time has been set]. 

Hopefully we can update again soon with more details. 

As of right now, please pray that Lauren and Justin would rest well and be refreshed by the Spirit in these days leading up to surgery, that the transport goes smoothly, that the hands that will be doing the surgery are steady and sure, and that little Judah will be on his way to recovery on Saturday. 

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Also, if you haven't checked out the awesome T-shirts Kyla has created as a fundraiser, please click the page at the top of this blog and follow the link there to check them out! [If you are on a mobile device and can't see the link, you may have to click "view web version" at the bottom. Once it refreshes it should be at the top]

If you are interested in helping financially or in other ways, please contact Kelsey at kelsey [dot] irwin [at] gmail [dot] com