The re-taping of her breathing tube went well!🎉🤩
The not so great news of the morning is that her pleural effusion has gotten worse, not better... so they will be inserting a chest tube to drain it. We continue to pray against any infection in her body, and ask the Lord for the outcome that once that extra fluid is gone... that it stays away. The chest tube will probably happen after 1pm Nebraska time (11am CA time) today.
I’ll let you know how it goes!
Update 2pm:
The chest tube went in successfully! I used the time that I couldn’t be in her room to finally set up the GoFundMe page for the people that have reached out to us to ask how they can send us financial help! We’re so grateful to be supported in so many ways by you, our extended community!❤️❤️❤️
Evening Update:
I’ve been sitting on this info for awhile today, letting it bounce around in my brain... thinking about how once I update everyone... that will mean it’s really happening! But it’s happening you guys! Annelise is getting her tracheostomy surgery TOMORROW!! The ENT surgeon came to find us today to say that the tracheostomy that he had scheduled for a different patient got postponed, so he has an opening and thinks Annelise is a good candidate for trach surgery tomorrow afternoon at 2:30! (12:30 in California!). We originally wanted the trach surgery to be done with the g-button surgery to get two surgeries done with just one time under anesthesia... but due to her shunt surgery being so new, the neurosurgeon wants to wait some weeks before anything else is done to her abdomen, because that’s where the shunt is draining. We decided to go ahead with the trach surgery tomorrow anyway, because it gets rid of the breathing tube and the risk of becoming accidentally extubated! I really don’t want the trach for her. My prayer and fear the whole time I was pregnant was that it would come to this, and I wouldn’t be able to handle it. Well it has come to this... my fears have come true, except I recognize that I’m different now than I was even just a few months ago, how can anyone not be different after all this? My perspective shifted somewhere between the good days with cuddles and rest, and the millionth prayer through tears when things changed on a dime. I can see that I can handle it, we can both handle what’s in front of us, because God has already gone before us, He knows what’s coming, and He will be there to carry us when we need it, challenge us when we need it, and we will have a deeper faith and see God do greater things because of it.
This next week will be rough. We won’t be able to move her after the surgery, so she might have to be paralyzed to keep herself safe. Thats just one more thing that we don’t want to go through, but it is the way to get to our baby breathing well, so we just will.
She’s also recovering from the chest tube draining fluid that turned out to be too fatty, meaning that after surgery, her body isn’t processing fat correctly. They will skim my breastmilk to give to her for awhile, and hopefully that clears up quickly! For a minute, that issue (called Chylothorax for our medically inclined... or Google inclined friends) was the big issue of the day... but it quickly got overshadowed by the trach surgery planning. Multiple specialists are okay with her having this chest tube going in to surgery, so onward we go!
The bonus is that we’ll see her whole face. 😍😍😍 Praying and trusting that this timing is God’s plan, and praying for a flawless procedure, good rest and a nice, energizing lunch for our surgeon, a comfy, well-placed trach for our baby... and nooooo infection!
That’s all that happened today!😳
The photo below is Annelise after a long rest induced by the pain meds that helped her through the chest tube procedure. She came back “bright-eyed and bushy tailed” according to her beloved night nurse.
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