“There is many a thing which the world calls disappointment, but there is no such a word in the dictionary of faith. What to others are disappointments are to believers intimations of the way of God.” ~ John Newton

We are experiencing a bit of a valley of disappointment after our exciting high yesterday. It’s so important to continue reminding ourselves of truth. And Mr. Newton’s choice of wording above is beautiful. The things that seem to us to be so sad and bad are hints — whispers from God — that His way of writing a story isn’t often going to be the same way we would write it. It won’t always be easy. Or happy. But it will always, always be good.

And our inability to hold onto truth doesn’t change the fact that it is still truth.

I realized that, because we are posting so often it’s probably getting confusing about which day or night we are describing, so I will start trying to remember to put in day/date info with each post.

I am typing this post at 11:30am on Sunday morning, March 24.

We all had an amazing night last night. I, especially, slept soundly and was almost completely unaware of everything for a full six or seven hours. I feel much more rested and clear-headed today.

Lilyan’s first X-ray this morning was described by the staff with words like, “pristine,” and “beautiful.” So immediate plans were made to start preparing her for extubation (removal of the breathing tube); her feeds were stopped; the settings on her ventilator were changed so that she would start taking on the responsibility of mostly breathing on her own; and they began making a plan for stopping her sedation — all with the goal of having her extubated around noon or 1pm today.

Then everything headed downhill.

Very soon after the settings were changed, Lilyan began struggling to breathe, and very soon after that, that look of terrified suffocation was back in her eyes. I actually tear up again just trying to type this. I really, really hate seeing my baby in that state.

She also spiked another, even higher, fever temporarily this morning, and they brought the ice packs back in again. (*Update at 2:30 pm. Fever has continued. They are going to take samples to start new cultures. Lilyan is noticeably sad this afternoon; she nodded her head that she is “big sad” as opposed to “little bit sad.” I wish so much that I could make everything okay for her. God is still in the middle of this and we will continue to trust Him as we follow His plan.)

The ICU team rounded and we all discussed the new plan. Of course, we had to return her to full dependence on the ventilator, and a new chest X-ray was ordered. Any plans for tube removal were tabled.

When we explained this to her, even in her sedated and panic-fogged brain, she understood and expressed much sadness. Those quiet tears are, once again, close to the surface.

We just got the results of her X-ray, and it shows that her lungs still have fluid in/around them, which explains everything we’ve been seeing.

I’m going to take a minute to explain more about what’s behind everything we’ve been fighting since her surgery on Wednesday night.

Back before her surgery, during one of our pre-surgery consultation visits with her primary surgeon (orthopedic), he was really intent on making sure we were prepared for both the hugeness of the surgery, and the high risks that we might face in the OR, and/or immediately post-op. I’ve shared this in an earlier post before, but in trying to put this into a terms we could relate to, he told us that just the surgery itself would have such a profound impact on her body and her systems that it would be the equivalent to being hit by a bus and then being run back over again.

Then on top of that, were risks that could result in other things that would make the whole ordeal even harder.

Sadly, she is now actually experiencing the majority of these risks. We learned yesterday that during her brush with death in the OR, she actually lost 2 L of blood, which is full blood volume for a child her age/size. All of this had to be replaced. Then her body really held on to everything and stopped putting anything out resulting in the massive swelling of her whole body. We understand that this isn’t really uncommon, but she really, really retained a lot. At one point after we got to ICU, she actually had 5.5 L of extra fluid in her body! Over the past 24 hours, she has unloaded 2 L, but she still needs the diuretics to keep it moving, and she still has a lot more she needs get rid of. All of this fluid is at the root of the problems she is having.

So, reviewing all of this information and the things we were told to be prepared for puts all of this into perspective again. We are clearly seeing what that scenario given to us in a word picture, looks like played out in actuality. And for now, we are once again in a holding pattern and praying for the patience and strength to just keep taking this one day at a time. And every day, we are repeatedly thankful that our little girl survived the surgery and is still here with us.

We’ll keep you posted. Thank you so much for continued prayers. We’re beginning to worry a little about the kids at home, but the older ones assure us that they are all still doing well. We have meals coming in for them up through Tuesday night, but it’s beginning to look like we may need more because it’s very unlikely that we will be home by then. If anyone is interested in helping in that way, please let us know.