Urgent! Chest closure update

Thomas's chest was closed this afternoon. Initially he tolerated it well, but around 4pm his blood pressure dropped. He was given volume and all inotropic meds were increased, but ultimately they decided he wasn't tolerating it and he is now having his chest reopened as I type this. We knew ths was a risk, as the first 12-24h after closure can be touchy. I'm so disappointed.

Please pray that he will tolerate this well and his blood pressure and other values will normalize quickly.
Pray that he is stable enough to try closing again in a few days.

This is such a roller coaster! Please pray that things will settle down and he will be strong so we can make some forward progress.

"how can you say the LORD does not see your troubles?
....Have you never heard?
Have you never understood?
The LORD is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure the depths of his understanding. (Isaiah 40:27, 28 NLT)

Monday morning

Thomas was stable overnight, and we are grateful for that! He is still a little acidotic, but the surgeon is hopeful for chest closure this afternoon. He will see how Thomas does today and make the final decision then. If they do close his chest, the OR team will come to the ICU and the procedure will be done at his bedside.

The intensivist on rounds thinks that they should push for chest closure even if it does compromise things from a ventilatory standpoint. He said it is not unusual for kids to end up on the oscillator (different type of ventilator) for a few days. This made me freak out, of course, but I appreciate the heads up that it may be necessary. Apparently it is used more routinely in this environment than I am used to.

The bloody urine is still present, but improved. Kidney function is not good, but improved slightly.

Here are today's prayer requests:
- that they will close Thomas's chest when he is ready
- pray for wisdom and steady hands for the surgeons doing the procedure
- pray that he will tolerate the procedure well, won't have any complications, and won't need the oscillator
- pray for kidney function to improve
- pray that he won't develop a chylothorax and that he will remain free from infection

Thank you!!

"I, the LORD, made you,
and I will not forget you. (Isaiah 44:21 NLT)

Rough night

Thomas had a rough night, and we are not sure yet if chest closure will happen today or not. He seemed fussy and uncomfortable, his NIRS values were lower than usual, and he seemed like he was working harder to breathe over the ventilator. They made the decision to increase his sedation and give him medication to paralyze him. I'm still waiting on rounds so will know more after that.

This weekend has been an emotional one for me, and my hormones aren't helping! The busyness of the past two weeks has slowed down....thank goodness. Everything has kind of caught up with me....the magnitude of everything we have been through, how exhausted I am, etc. I am just so worried about Thomas and hate to leave his side. This is quite a roller coaster, and things can change so quickly. It's also hard to not know when the next steps forward will occur. This is definitely teaching me patience. Im also sad that TJ is heading back to savannah to go back to work. I'm going to miss him, but real life must go on outside the CICU.

Thank you to everyone who has been leaving sweet messages,comments, and texts. I'm still not up for phone calls or visitors, but I cherish every message! I just want to sit with Thomas, look at him, and pray for him. After all, this is my maternity leave. By the time we get home it will probably be time for me to return to work. I am just craving time alone with my precious baby.

Please keep praying for healing for Thomas!
I'll update more specific prayer requests after rounds so I can hear their take on what happened overnight.

“My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. (2 Corinthians 12:9 NLT)

Friday night

Today was a good, quiet day....just what we needed!
Thomas was resting and comfortable. He is continuing to make steady progress, and we are thankful!
It looks like they may close his chest in the morning, so I wanted to make sure and ask for prayers for that tonight! We have been warned that sometimes babies have a "slump" after chest closure, so hopefully we can ward that off :)

Here are our prayer requests.....as always, we can't thank you enough for praying for Thomas!!
-pray that chest closure will go smoothly, and that he will tolerate it well
-pray that his wound will stay free from infection
-please continue to pray for his kidney function and urine output so that swelling will continue to improve
-please continue to pray for his colon- that xrays will remain clear
-pray that he will not develop a chylothorax (thanks to our awesome nurse Amanda for giving me possible upcoming complications to start praying about!)
-pray for Jada- Thomas's neighbor in the ICU....she is a beautiful baby girl who had surgery on Monday as well (different diagnosis). She has the sweetest parents! Pray for healing for her, and that she will continue to make progress!

He comforts us in all our troubles so that we can comfort others.  When they are troubled, we will be able to give them the same comfort God has given us. (2 Cor 1:4 NLT)

Thank you to all of our "comforters" who have been praying for us and encouraging us!!!