Another night of no sleep last night. BUT . . . Look who got her hair washed today, had all tubes removed from her face, lost all of her IV’s except one, started drinking by mouth  and even ate a few bites of food . . .  AND left the ICU unit tonight!!!

We are thrilled to be back on our familiar floor in the A building. So, so thankful for the incredible nursing care we got in the ICU and for the way the doctors there treated all of us with respect and genuine concern. And we will never, ever stop being thankful for those who were part of saving our baby’s life a week ago right about now.

Goodnight from A3 North!

The positive changes and forward motion of yesterday have continued today.

Not much sleep last night for any of us because Lilyan doesn’t sleep well with the CPAP mask (we were initially told she would be getting BiPAP, but we learned today that someone either misspoke when they told us BiPAP, or someone changed their mind). Anyway, she has been on CPAP and not BiPAP, and she had a lot of trouble sleeping with the mask on. It didn’t help at all that her tiny little Asian nose made it almost impossible for even the most experienced respiratory therapists to get it sealed well, which caused the machine to alarm (loudly!) over and over and over and over again all night. She is also having a lot of trouble with chest secretions pooling in her lower throat where her very sensitive gag reflex is kind of working overtime. She is coughing more (a good thing, as it helps clear out her chest), and breathing treatments are keeping things loose and broken up, but her crowded little trunk is having a little trouble negotiating all of this, and that’s even worse when she is on CPAP. So, because of all of this drama last night, we all started the day tired. But Lilyan rallied and pushed herself to keep taking new steps forward all day.

She has gone most of the day with no CPAP, and she spent two fairly long periods out of the bed, playing. She isn’t smiling much, yet, but became more and more alert as the day passed, and began talking more as the last of her lingering sedation gradually left her brain. She has also not run any fever today and cultures all remain clear. The procalcitonin test (the one that indicated possible sepsis) dropped from a 4 to a 1.5, so that is no longer a concern.

Our oldest daughter came for a short visit again and brought us some clean laundry and spent a little time playing with Lilyan.  And Lilyan got some fun gifts from a couple of dear friends — a little stuffed, praying bear, and new outfits for her doll Kate. She also finally managed to stay awake enough to watch a movie all the way through today, and that was actually a really big step forward.

They want her to try sleeping with CPAP tonight just to make sure we are doing all we need to do in order to prevent any lung collapses and setbacks. So we may face the same challenges we faced last night, but we are encouraged by the fact that we are now clearly moving forward, overall. Tomorrow we will spend the day much like today, increasing body strength and endurance, and strengthening those lungs. If all goes well, tomorrow might be out last night in the ICU.

Here are a few pictures from our day:

Magnetic blocks – waking up those fingers

Playing with her oldest sister

Dressing Kate in one of her new outfits

Watching “A Dolphin Tale” with Kate

Doing a little art work

With her very soft, new, praying bear

6:00 pm – Monday, March 25, 2019:

So, our morning started early and without much sleep, as I said in my update earlier today. And it turned out to be a critical day in Lilyan’s spine surgery journey.

We believe it’s safe to say that we have officially turned the corner unless this mysterious and capricious fever eventually turns out to be something surprising. Neither set of cultures has grown any bacteria at all, yet, so we may never know what’s causing these  high temps to keep popping up and then disappearing again.

Anyway, I’ll let the pictures do much of the talking today:

At 10:15 this morning, the team suddenly made the decision to pull Lilyan’s breathing tube and see if her body would be able to handle all of the fluid in her chest better. They decided to ease her down by moving to a BiPAP for awhile first. She was so completely exhausted from all of the coughing and choking and suctioning all morning. So, while she wasn’t crazy about this mask over her face, at least it wasn’t down her throat, and she fell into a deep and naturally peaceful sleep.

After she woke up from her nap, she was feeling a little bit fiesty and kept trying to ask a question. So her nurses took her mask off for a moment, and we heard her very hoarse, but beautiful little voice for the first time since before the surgery. Because of the risk that she might reach up and pull her breathing tube out accidentally in her drugged fog, she had to spend most of the time since surgery on Wednesday with her arms restrained at the side rails of the bed. Her first wish was to have her arm restraints removed so she could stretch. She started with her left arm, and this one, seemingly tiny thing made her deliriously happy. They had to add some padding to her face to protect her skin from the very tight mask.

Then she stretched out both arms and positively glowed. She just lay there like that, all stretched out on the bed like someone basking in the sun on a beach, and she was just the cutest thing, ever! After about 20 minutes without the mask, she started having trouble breathing, so they started to put the mask back on. At one point, she very politely told her nurse, “That mask is too tight on my nose,” in a voice that clearly communicated, “so I won’t be using that anymore, thank you.” She didn’t win that one, and as soon as it was back in place, she once again, fell into a deep sleep.

After a really good nap, an occupational and a physical therapist came to start working on getting her back to full health. She was excited about getting out of bed.

Her therapists brought her a wheelchair with a reclining back and she sat here for an hour, blowing bubbles and watching a movie, before she started to struggle a bit with her breathing again. So she got back into the bed, got the mask back on, and took another long nap for about two hours.

After that nap, she was finally completely alert enough to meet her new baby hippo and the new dog that Daddy insisted she should have for National Puppy Day, even though Lilyan wasn’t, yet, really conscious on that day.

Now she is playing on the iPad again while her new animal friends and Roslyn’s Maggie and Murphy look on.

Incredibly, there have been no coughing episodes or any problems with fluid in her chest now that the breathing tube is out. And they feel like they have now gotten enough of the fluids off to stop the Lasix tonight. These were some really huge steps forward today.

The plan is for her to sleep with the BiPAP mask on tonight, and tomorrow they hope to continue lengthening the windows of time she is able to go without the mask on. She tires very easily and requires multiple naps a day, but we think her progress today is just amazing, and we are so thankful.

It’s about 8:30am Monday, March 25. The night last night wasn’t great, but not our worst. They started cutting Lilyan’s ventilator settings back a bit and continued those slow changes through the night to encourage her lungs to try to work on their own. Once again, fighting against that fluid, is a constant challenge for her. Because of her trunk deformity, her chest cavity is far from normal anyway, so her lung capacity is diminished even on a good day. So that also makes this really challenging for her body.

But she did pretty well overnight. Scott and I slept a bit in turns, and while we didn’t get much, we think we got enough to get us through the day.

At about 5am, they decided to switch her ventilator over to CPAP settings, which will require a lot of work from her to breath on her own, and see how she will do. So far, she is doing fairly well with that and certainly better than yesterday. They are reducing her sedation in prep for possible extubation later and planning to step down to BiPAP first to kind of ease her into  full breathing on her own. There are some challenges with BiPAP (mask with significant pressure on her face, which will tend to make her feel, again, that she is suffocating), so we really don’t know what to expect.

Her routine chest X-ray was done at about 5:30 this morning, and that is still looking about the same. Fluid is there, but there is also air in her lungs, so the aggressive  attempts to rid her body of this fluid continue. And she really is getting rid of so much, but there’s still just a long way to go. If we get her breathing on her own and off her sedation, she will be able to to assist better with clearing her lungs through some healthy coughing, etc. As I’ve been typing this, she has had several pretty bad choking/coughing/suction episodes because of the fluid.

Good morning, X-ray techs.

One of the other big concerns now is this fever. It was up to 103 again this morning. We are still waiting on the newest culture results, but one test done yesterday (procalcitonin or PCT) indicated that sepsis is a possibility, so we are of course a bit worried about that. They did treat her yesterday, even while waiting for culture results, and we’ll just have to take this one step at a time.

Very early this morning, before the fluid in her lungs began pushing her to places of panic, again, she felt good enough to sit up and play a simple game on the iPad for just a little while. She quickly became exhausted, but this was another good thing to see.

We will let you know how extubation attempts go today. Please pray for our kids at home. Nolan’s anxiety is beginning to mount a bit for him as he misses us and is very worried about Lilyan, and Kathryn is showing signs of a UTI. I have talked to our urology nurse and she is working with our oldest daughter, Kristie, to tackle that for us.

As always, please ignore mistakes. Typing quickly and with about a quarter of a brain. More later.

“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.

The title of this post is a great description of this so-sunny day as compared to our very dark night last night. We are feeling ridiculously hopeful. We might be getting ahead of ourselves, but things really are looking shockingly good for now, and we’re going to enjoy that, whatever comes later.

After implementing the changes planned by the ICU team this morning, Lilyan has, as was expected remained more sedated, but way more restful all day. She is so very peaceful and has been sleeping what appears to be a good deep sleep most of the day.

Her oldest sister, Kristie came for a visit today, and while Scott, Kristie, and I chatted and relaxed, Lilyan slept like a little angel. We coaxed her to open her eyes just long enough to say hello and pose for this picture.

Here are some other beautifully encouraging changes we’ve seen throughout the day:

• Almost NO coughing episodes, and the few she has had have been very mild.
• Her fever suddenly went away and has not come back. She looks and sounds so good that they have decided to stop ALL antibiotics!
• She is starting to take breaths on her own, along with the ventilator’s help!
• Her wheezing is gone! In fact her last exam just now, done by the respiratory therapist, resulted in the words, “She sounds perfect!” (There is still fluid all through her body, including a bit around her lungs, that needs to be eliminated, but her lungs are sounding so, so, so much better.)
• And finally, we think the reason all of these things have changed so drastically is that they got so aggressive with fluid removal today. At her last check a couple of hours ago, her body had put out 1000 ml MORE than she had taken in. That’s how severe her retention has been. She still has a lot more to get rid of, but it’s happening for sure now. The swelling in her face had come down so much by late this afternoon that I was finally able to read her lips as she tried talking around the breathing tube. Three times. This made her so happy! She said, “I want water,” to which we had to tell her not yet, but we could wipe her with those almost useless wet swabs. Then after the pitiful swabbing of her mouth she said,  “With a bathroom cup,” asking again for an actual drink. We told her that we felt pretty sure it wouldn’t be much longer now. Lastly, she said, “iPad.” We tried to help her get set up to play a bit, but her hands are still too swollen to control her touch enough to play yet, and she fell back to sleep soon after that. But when we look into her beautiful face now, we are seeing our cherished Lilyan Moriah. Welcome back, baby.

Thank you, thank you, thank you for the hundreds of prayers. For now, she is doing phenomenally. My gut feels like she has finally turned a corner today, but no one else has said that to us, yet, so I may just be getting too excited. But it feels so great to see positive things happening so rapidly, one after the other, that we’re just going to let this excitement carry us along for right now.

After our day of both up’s and down’s yesterday, we had a night of nothing but down’s last night.

I never went to bed at all last night because Lilyan barely slept and needed to hold my hand constantly. Scott only slept a little bit. The fluid is such an issue and causing Lilyan to feel like she is drowning or suffocating much of the time.

They added a second diuretic during the night and that worked beautifully alongside the Lasix, but she is still completely unable to rid her body of fluid without that help, and it never seems to be enough to resolve her issues anyway. We just met with the ICU team, and they are going to continue both of these meds for now with the hope that we will see great improvement with her fluid output today.

She is also running a pretty high fever now, even with Tylenol. They have ice packs around her body to help bring that down, and have added another antibiotic to her very long list of medication. They took samples of blood, urine, and lung secretions to start cultures on all of those to see if they can find the source of infection. There is still a chance that there is no infection, but that this is another way that her body is reacting to all of this fluid she is holding onto. If that’s the case, then hopefully, ridding her body of the fluid will also take care of the fever.

They have also played with her ventilator settings again, and have actually taken steps backward in that area for now. But at the moment, keeping her comfortable while we address the fever and keep trying to rid her body of these fluids is the most important thing. So some steps back seem like the right direction to us for the moment.

For that same reason, they have also increased her sedation again to try to keep her calm during these more intense periods. Sometimes, when she is in her most acute phases of these “suffocating periods,” they can suction fluid from her lungs. Other times, they can’t get anything out, but you can hear the fluid in there and feel it with each breath if you lay your hand on her chest. She is also wheezing now, so they’ve added Albuterol to her meds list.

She is tired. She is fighting so hard and is so sweetly doing all she possibly can to respond when we stroke her hands and face and urge her to relax and calm down during her moments of panic. I honestly know that I couldn’t do that as well as she is if I felt like I was drowning. But she is clearly getting tired. Taking these steps back will allow her to give her body the rest it needs and let the rest of us fight these battles for her for awhile.

Please keep praying for our brave and strong little girl. Please pray that we can keep our thought processes, ability to communicate, and emotional responses where they need to be in the midst of pretty intense fatigue ourselves. Just walking through each day requires a lot of mental energy.

Today has been a little up and down. In situations like this, perspective shifts a bit. Teensy steps forward can feel like huge victories, and teensy steps back can feel like huge blows. And the rest of the world fades way into the background somewhere.

After her first dose of Lasix this morning, Lilyan’s body dumped 300 ml of fluid by the one-hour mark, which made us want to have a party.  The ICU team rounded soon after that. They were still concerned that she can’t do any breathing on her own and the ventilator is having to do all of the work. They also seemed to think it was necessary to remind us that we haven’t turned a corner yet. That’s okay, though, because we really want an honest, accurate picture of what’s going on at all times. Worries about her blood pressure were still in place. They pulled her drainage nasogastric tube and replaced it with one for feeds so they could start nutrition today through that.

She continued to release fluids, although at a slower pace, as she got further out from the Lasix dose. The team decided to continue that Lasix every six hours, and she always dumps a lot right after each dose and then tapers off as time for the next dose nears, but overall, her elimination is looking good for now.

They watched all of her key numbers more closely for awhile and then decided to try stopping the med keeping her blood pressure up to see how she would do. And she has stayed at a stable and acceptable blood pressure reading all day, even with the Lasix going every six hours. That was another huge victory.

But her first attempt for feeds around noon didn’t go well. After just a little while of her feeds running at a slow rate, she began to retch and choke and gag. This was absolutely terrifying for her with the breathing tube in place. She hasn’t really been the same since then. She has seemed emotionally depressed and more withdrawn. This could be because of the sedation, or because she is more aware of what’s going on and feeling the heaviness of it all. Or something else that we haven’t identified yet.

She is trying more and more to communicate with us, but she can’t talk because of the breathing tube in her throat. Watching her becoming seemingly more depressed, watching her try to talk, watching silent tears flow down her cheeks as they changed out her nasogastric tube, and then watching her struggle with the feeds were all so hard and left me feeling pretty weepy during the early part of the day. I think I’m just beginning to fully comprehend how sick she is. I’ve just been trying to focus on her and haven’t really processed it. She is still in such a fragile place in many ways.

That said, there have some positives today as her lungs sound like they are moving more air after they changed some things in her ventilator settings. Also, her second feed is running now, and that seems to be going much better this time.

And the biggest boost for us was a visit from someone very special. You may have read my posts on Facebook lately about the benefit concert being held for The Shepherd’s Crook Orphan Ministry tonight. Jason Gray traveled to Cincinnati to do this concert for us, and all of our other still-at-home kids are there right now, having a wonderful time. Before surgery, Lilyan was so upset that she would have to miss this concert. Jason offered to come see her here this afternoon before the concert, and he drove straight to the hospital as soon as he got to town.

Scott and I were blessed more than we can ever say by our time talking with Jason, and we could’ve talked with him all night. Here are some very special pictures and one short and very, very special video clip of him singing one of Lilyan’s favorite songs to her. She was able to wake up enough to choose the song she wanted him to sing, even though she drifted back off soon after he started singing. We may share the whole video later if we get permission from Jason to do that. Later in the afternoon, she asked to watch the video on my computer. She tried twice to watch it through, but dozed off almost immediately both times, poor thing.

Here are some pictures from our visit:

Concerns this evening are:

• Breathing still isn’t where they would like to see it
• In spite of all of the fluids her body is now eliminating, her swelling is still very, very bad. It suddenly became alarmingly worse late this afternoon in some places, like her upper arms. They think it’s just taking time to get all of this extra fluid out, and that it’s shifting in her body making it look so much worse in some places.
• Lilyan is suddenly having chest pain. So far, each time she has complained, the nurses have suctioned out fair amounts of mucus from her lungs, and that eases the pain a bit but doesn’t eliminate it. No one is overly concerned about this right now because her lungs sound even better now than they did this morning, but they are watching it closely. It is making her pretty uncomfortable.
• Her overall “down” mood. We do think that things will get so much better for her if we can get her off the ventilator so she can talk. She was able, by answering with nods and shakes of her head, to tell us that she is feeling sad, frustrated, and scared. I asked if she wanted me to try to explain why all of this was happening and she said yes. I gave her a simple overview of what happened Wednesday night, but she had trouble staying awake to follow that, so I’m not sure how much she retained. A dear friend suggested that we come up with a system of photos for her to use to communicate her wants and needs, and our daughter suggested an iPad app that our grandson with autism uses for that. We’re still working on perfecting this for her, but it does seem to help a little bit at times.

Thanks, as always for all of the comments and prayers. I really do want to respond to all of those encouraging comments, and I still plan to try to do that. We are so grateful for the love we are feeling.

Thankfully, Scott and I both got some periods of deep sleep during the night last night in spite of the constant heavy traffic in Lilyan’s ICU room. (If you missed that update last night, that link is here.) Her nurses were, again, completely committed and beautifully attentive to her needs, even assuring her constantly, for us, that Mommy and Daddy were in the room with her and just sleeping in the parent bed beside her. It’s really important for her to know that we have stayed by her side constantly as we promised. She has continued responding appropriately through her fog of sedation, and has done well with the change in sedation med.

We have been awake now since 4am as some fairly intense consultations have been taking place about the fact that we still have no urine output. They have been able to get her blood pressure up a bit although still not as much as they would like. The concern about giving her Lasix is that it will drop her blood pressure even more again. After much talking over the past couple of hours, they decided we have to try. They gave her a dose of Lasix at 5:40 and have told us that it will probably be a half-hour to an hour before we see anything, positively or negatively, from that. They also increased her BP med (Norepinephrine) a bit as a little pre-Lasix boost to try to help head off any issues. So now everyone is watching her closely.

She opened her eyes very briefly a couple of times this morning and wanted to hold my hand, but she remains mostly peaceful and calm, which we are so, so thankful to see. Outward signs of distress from our babies during time like this always make it much harder on our hearts, so we can’t say enough how glad we are that she appears so peaceful and comfortable.

Our prayers now are, obviously, focused on where things go in the next hour. Everyone is really concerned about this lack of output. They are watching kidneys closely through repeated blood draws, and so far, things still look good on that front.

We had another jolt of reality last night about just how serious all of this has been when another of the anesthesia doctors stopped by to talk to us. He was with her through that long night of surgery and remembered our family because he has also taken care of some of our other kids in the past. He was really nice and just said he wanted to make sure we understood just how serious things were that night with her. He said things like, “She was really, really in a lot of trouble,” and, “We had all hands on deck and everybody trying to save her,” and, “She lost so much blood, and we had to give her lots and lots of blood transfusions.” We were super thankful for this info, but for some reason, I felt even more shaken by his report than I had been when it was happening in real time Wednesday night. He was clearly a very calm person and not a sensationalist, and his tone of voice and the genuine concern expressed through his demeanor painted an even more accurate picture of what actually happened. It is so clear that he and the other anesthesiologist who talked to us Wednesday night really thought they were going to lose her — that they didn’t think they were going to be able to get her back. Once again, we are so thankful to have our girl here with us and long to see her completely through this crisis.

Current status of other areas concerning her stability:

• Her heart rate now looks great and has for hours. It had been staying higher than everyone liked.
• Her oxygen saturation levels look good, as do other aspects of her respiration, but the ventilator is doing all of the work for her. She is not taking any breaths on her own, and this remains a bit concerning. Any attempts to stimulate her body to assist in taking breaths have failed so far.

Thanks so much for all of the prayers. We’ll keep everyone posted as we are able.