Grace That Orders Our Trouble and Pain

I’m writing this update from beside our daughter’s hospital bed. Not Lilyan’s. Roslyn’s. Not at all what we had planned.

While I’m here with Roslyn, Scott is trying to get back home where Lilyan’s wound VAC alarm is going off, alerting us to a leak, which needs to be addressed asap. He is stuck in stand-still traffic on I-75.

Lilyan’s seemingly-never-ending spine saga continues. She still has fever every day. She still has backaches and headaches every day. She still has surgeries every week. She still has her wound VAC in place, and it still wakes us many nights alarming and requiring fairly involved dressing changes to keep it functioning. And we are all still living in as much a state of hide-from-germs quarantine as possible.

Healing is happening, but it’s still very slow and there is still no hint that the end of this is coming anytime soon.

Now, back to Roslyn. Both Roslyn (who has spina bifida) and Kathryn (who has cerebral palsy) developed UTI’s over the past couple of weeks. In fact, Kathryn has had three UTI’s during the almost-three-months we have been caring for Lilyan. After their terrible bladder challenges and huge bladder reconstruction surgeries back in 2016 and 2017, and then their recoveries, and finally since their return to health around the end of 2017 and beginning of 2018, both Roslyn and Kathryn have been doing great. Until now. We are still a little uncertain about what’s causing Kathryn’s infections to return, but we understand some of what’s causing Roslyn’s trouble.

If you’ve heard or read anything about the antibiotic resistance crisis, then you’ll understand why we are really worried to learn that Roslyn has developed a pretty significant resistance to antibiotics. We learned about this last week as they were trying to figure out how to treat her current UTI. We also scheduled an appointment with Lilyan’s Infectious Diseases doctor so that he could meet Roslyn, help us better understand what all of this means, and become involved in the future treatment of her infections. That appointment is scheduled for June 17. We hope to understand all of this better after that appointment.

Unfortunately, when Roslyn woke up yesterday (Sunday) morning, it became clear that her body wasn’t responding to the antibiotic they were trying, and within a few hours, it was also clear that the infection had moved to her kidneys. She was a very sick little girl and getting sicker before our eyes. So we brought her into the ER late yesterday afternoon. There, the Urology Department, Emergency Department, and the Infectious Diseases Department all worked really well together and got her started on an IV antibiotic that everyone thought she would do well with.

ER 6/9/19

SO Sick - ER 6/9/19 #1

We had a bad night here at the hospital as her fever really didn’t want to come down and as her Foley catheter continually clogged, keeping her bladder from draining.

But the good news is that she is definitely some better today (although her fever is climbing again as I type this), which seems to mean that we have found an antibiotic that will work for her this time. It may not work next time, but it seems to be working this time. There is an oral form of this same drug, so we are hoping we won’t be here very many days before they will let us go home and continue treatment there — if she keeps responding well.

Doing Better 6/10/19

Friends have rallied, again, and are feeding our kids back home, and we have a plan in place that will allow us to be with Lilyan for her surgery on Wednesday if Roslyn is still in the hospital as we expect her to be. Friends and family are SUCH gifts!

In the middle of all of this craziness, our 21-year-old son, Colin, was also diagnosed with a pretty serious seizure disorder. Colin was born in Bolivia at only twenty-six weeks, and miraculously survived, but lost his vision. His latest testing showed seizure activity in multiple portions of his brain. Our neurosurgeon felt that he has probably been having seizures for years, and that they are probably (although we’ll never know for sure) a result of his very premature birth. Unfortunately, we didn’t catch any outward signs of seizures in past years. I have moved through a whole range of emotions in processing this information, and I have wrestled with a lot of mom-guilt that we must’ve missed things we should’ve picked up on. Mom-guilt is a real thing. Whether it’s valid or invalid, it’s real. But we can’t go back. We can only move forward. I’m mostly at peace with this now.

While we were in ICU with Lilyan back in March, Colin had some very obvious seizures, and that’s what prompted this search for answers. He is on medication now and we began almost immediately seeing improvement. We are beginning to feel some excitement about how his life and ability to function will probably improve now that this has been discovered and is being treated.

Colin on Hike 6/2019

Colin on our most recent family hike in the woods, after starting on anti-seizure medications. He was more animated and interactive than we’ve seen him in quite awhile.

But all of this has been really hard, and there are a number of other challenges that I’m not even going to take time to go into here. We pray for rest and a break, and we wake up to new “trouble and pain” day after day.

Yesterday (Sunday) morning, as we were watching Roslyn and trying to determine if we needed to take her to the hospital, we went ahead with our planned family service. The topic was God’s sustaining grace, and it was just what we needed to hear to prepare us for a trip to the ER a couple of hours later, ending with another unexpected hospital admission.

I texted our older kids to let them know we were headed to the ER with Roslyn and said, “You reach a point where you just know you can’t take anymore and then something happens that you’re sure you can’t cope with. But you don’t have a choice, so you just do. How long will that work? We had our little family service this morning as we were watching Roslyn and trying to decide what to do. It was on sustaining grace. We are crying out for that right now and I know that’s the only thing keeping us going anyway.”

During that home service, Scott drew heavily from a post from John Piper’s Desiring God blog. I’d like to share a little of what Mr. Piper had to say:

I wrote a four-line poem called ‘What Is Sustaining Grace?’ Here’s its definition in four lines.

Not grace to bar what is not bliss,
   Nor flight from all distress,
But this, the grace that orders our trouble and pain,
   And then in the darkness is there to sustain.

That’s what I mean by sustaining grace. If I were to define grace for you as that which bars what is not bliss, that which is flight from all distress, or that which can’t possibly order your trouble and pain, I would be a liar. I would be unbiblical, and I would be out of sync with real life and real experience. It’s just unbiblical to think about mighty, sovereign grace in that way.

[About] Paul in 2 Corinthians 12. Remember the thorn in the flesh? We don’t know what it was, but it was thorny. It was painful, and so he cried out, ‘God, take it away! God, take it away! God, take it away!’ Three times he cries out, and three times the answer comes back, ‘No, no, no.’ Then Paul gets it, because of the reason that Jesus gives him: ‘My grace, my sustaining grace, is sufficient for you, for my power is made perfect in weakness’ (2 Corinthians 12:9). Paul relents, and he says, ‘Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong’ (2 Corinthians 12:9–10).

It is not grace to bar what is not bliss nor flight from all distress. It’s the grace that orders our thorns in the flesh. . .  It’s the grace in the darkness that’s there to sustain.

There’s no question in our minds that we are in a dark place right now. There are so many puddles of sunshine that pop up here and there, but overall, it’s a dark time. And the reminder that we have this promise of “grace in the darkness that’s there to sustain,” was what we needed to get us through these next unpleasant surprises waiting for us.

We are holding onto that.

 

When My Spirit Faints Within Me

I haven’t slept well the past two nights. I have felt so much unsettling turmoil in my soul, that resting peacefully is hard. And this turmoil invades my dreams even when I do doze off.

I don’t even know exactly why. I have examined this and tried to figure it out.

My best guess is that it’s just the cumulative emotional ups and downs; concern for Lilyan’s and all of the other children’s welfare; constant necessary alertness and planning; continual required changes in our daily plans; and the fatigue that comes from all of these things — all with no let-up for well over two months now.

I feel like I reach deep down inside myself every morning and pull out any remaining scraps of anything that will enable me to get through each day and care for my family. And there are just so few scraps left now.

When I woke up this morning, I just stayed on my pillow, staring out through my window. I watched the trees blowing in the wind heralding an approaching storm, and as the thunder started to rumble in the distance and the sky gradually darkened, I felt all of my inner being do the same thing. That darkness just spread over me and through me, and it pressed so suffocatingly on my heart that I didn’t see how I could possibly get up and start my day.

Even before I did finally get up, I was fully aware of the need to stop reaching inside of myself (I already know how utterly futile this is!) and to look up to the Source of my strength instead. I prayed passionately as I stared out of the window.

“God, I don’t know how much longer all of this is going to drag on. I don’t know how to keep going. But I know that you know all, and that every second is somehow part of your good and perfect plan for Lilyan; for me; for Scott’s and my marriage; for each of our other children; even for Greg (our son-in-law and The Shepherd’s Crook Orphan Ministry’s Executive Assistant) who is keeping TSC going for us as we just try to survive day after day and guiltily leave him handling everything with the ministry. Please give me what I need to get up and do this day. Please fill me with the energy I need and JOY that I should be feeling for the honor of being the mother in this family and for walking a holy path laid out by you before the beginning of time.”

I’d like to say that I was suddenly infused with joy and strength and passion for this coming day’s work. But I wasn’t. I felt nothing.

But I did get up. And that was something.

I took a few minutes to do a little quiet time, and these words from Charles Spurgeon, and these verses from David’s heart in the Psalms did calm the turmoil just a bit:

“The Lord will perfect that which concerneth me.” Psalm 138:8

“If we indulge in any confidence which is not grounded on the Rock of ages, our confidence is worse than a dream, it will fall upon us, and cover us with its ruins, to our sorrow and confusion. The Psalmist was wise; he rested upon nothing short of the Lord’s work.”
~
Charles Spurgeon

When my spirit faints within me,
you know my way! Attend to my cry,
    for I am brought very low!
Psalm 142:3, 6

I stretch out my hands to you;
    my soul thirsts for you like a parched land.
Let me hear in the morning of your steadfast love,
for in you I trust.
Make me know the way I should go,
    for to you I lift up my soul.”
Psalm 143: 6, 8

Lilyan had her weekly surgery yesterday. The report was the same as every week. The wound does appear to be healing; still very far to go; still puzzled by her daily fevers, etc., etc., etc.

Again I say, we are very thankful that healing is taking place, and that the infection is improving, but we tire of seeing our girl struggle through these fevers daily. We are weary of weekly surgeries. It breaks our hearts to see her losing muscle mass and strength (she is losing about a pound a week still, and we think much of that is muscle mass). Here is a picture of her trying to get through school earlier this week in spite of a 102.4º temperature. She was determined to finish her school work. She is amazing and strong and just presses on every single day.

Doing School With High Fever May 20, 2019

Lilyan’s neurologist joined the multiple teams navigating her journey this week, and we do feel like he has shed some light on the possible cause for her fevers. He showed us X-rays of Lilyan’s Chiari malformation (part of her spina bifida). He said that the areas of her brain being stretched by her Chiari could definitely affect her body’s ability to regulate temperature under times of stress. Everyone involved believes this sounds plausible, and it also explains why she has always run fever under times of emotional stress or during times of fear. This just happens to some kids who have neurological issues like hers.

The good news is that this means, if everyone is correct (and in our guts, we feel they are), her infection truly is responding, and there is nothing big to worry about. The bad news is that this could stretch out for many months before the body gets itself back to a place of healthy, stable temperatures, and we can’t do anything except stay the course day after day, treating her fevers and modifying our days as needed to get her through each one. And keeping her away from any potential illnesses, which means continuing to stay mostly cut off from the world. We are all very tired of this part.

It is also looking more and more unlikely that Lilyan’s wound will heal in time for her to do any swimming in her Make-a-Wish pool this summer, and this just breaks my heart. We have bought her a special deck umbrella that she can use to at least spend time out there with us in the shade when it isn’t too hot and humid, but this is certainly not the kind of summer we would’ve chosen.

I do feel a little better prepared for the day, and the hard days ahead. But I also feel very fragile. Like a wisp of wind would knock me back down. I will have to lean heavily on these words throughout the day, I’m sure.

We have much to be thankful for and God’s promises to carry us through anything ahead. My head knows this, and I will trust the Holy Spirit to, in His good time, bury this deep in my heart as well.

The Fight Continues

Written Monday, May 13, 2019:

I’m so sorry it’s been so long since we updated everyone. Lilyan continues to fight, and not much has changed. But we have been forced to add addressing our other kids’ medical needs back into the mix now. We knew we couldn’t leave them hanging forever, and we have fallen pretty far behind with some of their routine follow-up visits with specialists. We have also had a few new issues arise for a couple of them, and we are trying to take care of getting to the bottom of those things. This has made it much harder to find time to get updates written (or to do much of anything else, either).

No matter how hard I try, I have not managed to get back on top of regular meal prep and other aspects of normal life, and each time I think I have a day to try a little harder at this, Lilyan will experience some kind of set-back that requires us to scrap our plans for the day and move back into survival mode. And we’re reminded, once again, that life is very much not normal right now.

Each time this happens, I find myself wrestling with feelings of defeat. I have had to accept the fact that I need to set much smaller goals for myself and the family each day, and we have tried to all settle more into a mindset of very long-term uncertainty. This is a season, just like many of the seasons that comprise our lives. Some seasons are good; some are bad. Many are hard; some are harder than others. We’ve had hard seasons before, and even though I don’t think this is necessarily the hardest we’ve ever been through, it feels really, really hard. I think some of that is due to the feeling that there is no end in sight and still so many answered questions.

Lilyan’s most recent surgery was on Thursday of last week (May 9). Both her plastic surgeon and her orthopedic surgeon were in the OR this time. They both talked to us afterward and felt encouraged with the healing they see taking place. They stressed, again, that we still have a long way to go (our next four surgeries are already scheduled), but that they do see healing taking place. The big concern is still the fact that she is running these daily fevers in spite of the healing that seems to be taking place. They ordered a CT scan of her head, to check on her shunt again, and more blood cultures. Everyone just wants to continue making sure nothing is being overlooked. Neither of these showed any abnormalities, which is good, but still leaves us in the dark.

Blog Post for May 13, 2019 #2

Lilyan, still feeling the affects of anesthesia, but so happy to be heading home after her surgery on Thursday

Starting on Saturday, her daily fever pattern began to change in a way that is causing even more concern. She woke up with a fever of 102º that morning, and that, all by itself, was atypical. She usually runs her daily fever in the afternoon, and on the occasional day when it hits in the morning, it’s always later in the morning, after breakfast. It was also more resistant in responding to Motrin and Tylenol. But it did eventually come down and stay down all day, so we didn’t worry too much.

Then yesterday, Sunday (May 12), she once again had a fever when she woke up, but this one was more concerning as it was 103.4º. It’s been a long time since she ran one that high, and, again, it was a little harder to bring down. For weeks, we had been planning a day of partying for yesterday as we celebrated Mother’s Day, Kathryn’s fifteenth birthday, which was on May 9, and Robyn’s twenty-first birthday, which slipped by practically unnoticed while we were in the hospital back in April. We were all a little worried that we might have to cancel these plans, but the fever did eventually come down again. We decided to continue with our plans and reach out to Infectious Diseases the next morning.

It really was such a special day, and we are so thankful that we were able to pull it off. Here are a few pictures.

Blog Post for May 13, 2019 #4

Kathryn and I always celebrate her birthday and Mother’s Day together, and we always get a new picture with each other on that day. It was good to do something so normal.

Blog Post for May 13, 2019 #4

Robyn’s table (Lilyan’s sweet face)

Blog Post for May 13, 2019 #7

Kathryn’s table (she was so excited!)

This morning, she once again woke up with a fever. It never got as high as yesterday’s, but it was even more stubborn about coming down. We communicated with one of the Infectious Diseases doctors, and he remains concerned. He is wondering about the possibility of a “deep ‘loculated’ infection, meaning a collection of fluid; like an abscess.” He ordered an ultrasound of her back, and that is scheduled for tomorrow afternoon, but he explained that imaging will be a challenge because seeing things accurately will be really hard due to the hardware in her back. So the saga continues.

We all recognized that we were beginning to feel sudden and pretty intense discouragement today, and Scott and I decided we needed to do something to try to help reverse this. So we loaded the kids up and took them to Sharon Woods for a walk in the woods. We knew that there shouldn’t really be anyone there on a cloudy day like today and during a school/work day, so we felt pretty safe from germs.

We were right. The park was empty, and the fresh air and connection with nature were good for all souls. Even those with four legs.

Blog Post for May 13, 2019 #8

Once again, it felt so wonderful to do something that felt so close to normal

Blog Post for May 13, 2019 #9

Scott with granddaughter Jhannel

Blog Post for May 13, 2019 #10

Kathryn loved this

Blog Post for May 13, 2019 #11

Lilyan watching the water flow under the bridge

Blog Post for May 13, 2019 #12

Roslyn and Nolan

Blog Post for May 13, 2019 #13

Our dogs were so happy about this outing

I’ll try to update if we get any new information from Lilyan’s ultrasound tomorrow. As always, thank you so much for all prayers.

 

Did We Make the Wrong Choice?

Written Saturday, April 27, 2019:

Short update and some perspective and healthy reminders.

Lilyan continues to run fever each day, but mostly feels good in between those fevers. They stay between 101º and 102º and continue to come down with Motrin and Tylenol, so we aren’t overly concerned — just watchful. As I said in my last update, we feel like these constant fevers are an indication of how hard her body is fighting to beat this infection. She is very tired all the time, but mornings are typically better for her. Each day at about 2:00 pm, we see her really start to fade, and by bedtime, she can barely even hold her head up.

It’s hard to watch her go through this and twice over the past five weeks, both during some of our scariest moments with her, Scott and I questioned our decision to put her through this surgery. We knew that not doing it would’ve meant a short life for her, but we started to wonder if it might’ve been better to have given her a shorter life without all of this pain and all of these surgeries and hospital stays and really hard separations from her siblings. Without all of these powerful medications that carry, along with the hope of healing, the risks of life-changing side-effects and complications. Without all of this disruption to her normal life and regular routine, and the uncertainty that each day brings.

But as we talked through these things, Scott realized, and pointed out to me, that it wouldn’t just have been a shorter life for her. It would’ve been a shorter life that included exactly what she’s going through now — wound infections, in and out of the hospital, separations from her beloved siblings, pain, fear, surgeries, and medications over and over again. But instead of moving toward the hope of healing, we would all knowingly be moving toward the end of her life and watching her suffer from continually declining lung function and quality of life. That put things into perspective for sure.

So while Lilyan was outside in the sunshine today, waiting for her Motrin to start bringing her fever down as her doting sisters walked her around the neighborhood in her hospital-issued wheelchair (her old one no longer fits her re-formed trunk), I spent a little time going back through photos taken of Lilyan since her homecoming in June, 2014.

I wish so much that we had thought to deliberately get before and after pictures, but even these that I found are pretty shocking to us and remind us that, once we get through this hard season, it’s going to be so worth it for our girl! Her chest no longer rests on the floor when she sits, and this is one of the major changes that will save her life now.

Front views before surgery:

Lilyan Sitting - Before Surgery #10

Lilyan Sitting - Before Surgery #12

Front views after surgery:

Lilyan Sitting - After Surgery #3

Lilyan Sitting - After Surgery #2

Side views before surgery:

Lilyan Sitting Before Surgery #5

Lilyan Sitting - Before Surgery #11

Side view after surgery:

Lilyan Sitting After Surgery #1

So, no matter how much harder it might get from here, we once again feel confident that we did not make the wrong choice for our girl. And we are so thankful to be so close to a hospital with such gifted doctors who still feel it’s worth the hard stuff, and even the risks, to give our daughter this chance at a better life. There are other hospitals around the country that have decided it’s too risky to continue attempting these surgeries for children like Lilyan.

Here are a couple of fun shots of the kids playing outside together in between the rainy days we seem to have so many of right now. We are continually saying aloud to each other just how thankful we are to be at home at this moment even though the battle for health and healing rages on.

Playing Outside 4/27/19 #1

Terrible lighting, but these two were so excited to go outside together

Playing Outside 4/27/19 #2

Blowing bubbles

Playing Outside 4/27/19 #3

Bubbles . . .

Playing Outside 4/27/19 #4

. . . bubbles (Jaden) . . .

Playing Outside 4/27/19 #5

. . . and more bubbles (Owen)

Playing Outside 4/27/19 #6

Look closely. I almost can’t stand how cute this picture is! (Oh, and Caelyn is pretty cute, too.)

 

Our Weary Heads Upon His Bosom

Written Thursday, April 25, 2019:

“We do not expect to travel through this wilderness exempt from its thorns and briers; but it is well when we feel Jesus is with us, and we can lean upon His arm, and often repose our weary heads upon His loving bosom, while He speaks to us and says, ‘Take courage! It is I. Don’t be afraid.'” ~ Mary Winslow (1774-1854)

So sorry I left everyone hanging again. Today turned out to be unexpectedly packed. We have quite a bit of good news but also some hard news from today’s surgery.

The good news first: Lilyan’s back continues to heal, and they let us come home after surgery this morning! Oh man! That was wonderful! In fact, they are planning to try doing surgical wound cleanings about twice a week now, but as an outpatient each time. As long as things continue to go well. Her surgeon commented that her tissue is gradually healing – at a pretty great rate, in fact – and, again, we are thankful for the good nutrition she has been getting through her Juice Plus capsules and the Juice Plus protein shakes. Protein has been proven to speed up the healing process, and these shakes make it easy for us to keep that going in healthy quantities, even though we aren’t able to put healthy meals together very often right now.

The bad news: There is still lots and lots of healing to go, and we’re still facing such challenges as we try to stay on top of the infection. Some of the bone at the site of the graft didn’t look great, so our surgeon took a piece of that for culturing, and it still showed quite a bit of yeast. It’s so, so hard to stay ahead of that yeast, and apparently, the E. coli is very aggressive, too. She said we are looking at “weeks,” of surgeries, and possibly even “months.” We can’t let ourselves go there, yet. We are being forced to live very much in the moment every minute of every day.

We have also realized in talking with our doctors that we have to continue in our long-term state of being mostly in quarantine. This has been very hard to accept after so many months of this. Lilyan’s body is just fighting so, so hard and is so compromised by all that’s going on inside of it, that we can’t risk exposing her to anything else that would require it to work any harder. She continues to run a fever about once a day, which shows us how hard her body is fighting. She has to be kept as healthy as possible for all of these surgeries and the required anesthesia, so we will be confined mostly to home except for appointments that we absolutely have to keep. Some of kids are pretty far overdue for some of their routine follow-ups with specialists, and we can’t postpone those any longer.

A number of other big things have been going on here that not many people know about.

Our son Colin, who was born at 26 weeks gestation (lost his vision due to retinopathy of prematurity) and adopted from Bolivia in 2000, seems to be having some fairly significant seizure activity. I would’ve said, before all of this, that he has never had seizures, but we are now thinking that it’s possible these have been going on for quite awhile as we look back and put some pieces in place. But during these many weeks of Lilyan’s hospitalization, things seem to have gotten worse and he has had some pretty concerning episodes here at the house, witnessed by the kids. He has no memory of any of them. The longest lasted about five minutes and happened right in the middle of a conversation he was having with a couple of his siblings. Once the episode ended, he picked up the conversation where he had left off, as if nothing had ever happened and had no memory of anything except the conversation. We have contacted our neurologist, but can’t get Colin in until May 16, and even scheduling anything right now is really hard because of Lilyan’s unpredictable surgery schedule. He seems stable for now and we are watching him very closely, but please pray that he will remain stable until we can get some answers.

Kathryn has been so healthy since her very serious problems all through late 2016 and most of 2017. But she had a pretty serious urinary tract infection while we were in ICU with Lilyan. With our daughter Kristie’s help, we were able to get that confirmed and treated, but she is having some problems again. We were able to get home from Lilyan’s surgery today early enough to get confirmation that Kathryn does not have another infection, but it seems that the Botox they injected into her bladder back in 2017 has worn off and will have to be repeated. This is a procedure that can be done as an outpatient, but does require a trip to the OR under anesthesia. We have testing and a clinic appointment scheduled over the next couple of weeks to start getting pieces in place for that as soon as possible.

We have had some regression with some challenging behaviors with one daughter in particular who is still working through the hard stuff that our kids come home with. This isn’t a surprise. In fact, the surprise is that she managed to hold things together as well as she has in the midst of these really, really hard past five weeks. Please pray for her heart. She is trying. Pray for us. We need wisdom and patience — both hard to find when we are so very tired and “used up.”

Lastly, our beloved dog Godfrey has caused us some worry. He is an older dog who is at least eleven or twelve years old, and he seemed to be showing some signs of possible congestive heart failure. These symptoms kind of came and went, and we couldn’t do anything about them because we were trapped at the hospital. Again, because we got home so early today, we were able to contact our vet and get him in for a check-up. We were very relieved to hear that his heart and lungs sound good. He did some blood work to test a few other things that might explain the symptoms we are seeing. But he also felt that it’s possible this is just Godfrey’s way of reacting to the anxiety caused by our coming and going. He is very attached to the two of us, but especially to me, and he hates it if I’m gone for any length of time. We knew he was an old dog when he came into our lives two-and-a-half years ago, and we knew that we might not have him for a long time. But in this place of such fatigue and heightened emotions, I just felt like I couldn’t bear losing this dog-love of mine right now. We are thankful that things seem to be stable for now. God cares even about these kinds of heart-pains.

We clearly know that we have so, so much to be thankful for. Most obvious is the fact that we didn’t have to plan a funeral for our little princess, Lilyan. Tears still come easily as we remember how close we came to losing her. We also know that she could be much sicker than she is, and we are so grateful to see her slowly healing and to be spending more time at home now. But honestly, parts of these past few weeks (months, actually) have been very, very hard. We really are so very tired.

But we truly have felt God’s presence by our sides through so much of the hard stuff. And we have experienced that rest that can only come from leaning upon His arm, and reposing our weary heads upon His loving bosom, hearing Him say to our hearts, “Take courage!” This is something that is impossible to explain, but it has kept us going when we thought we couldn’t take another step.

We have also been so blessed through so many of you. I’m so sorry I have not managed to answer your comments on my blog posts and Facebook posts, as I have longed to do. I haven’t even thanked most of you who have sent money to help offset some of the expenses for Scott’s and my food at the hospital, gift cards, meals, and money for feeding the kids at home, and cards and gifts that made Lilyan feel special. We are so very grateful.

The only picture I have tonight is of home.

I love this home of ours, and as we drove away this morning to take Lilyan back to the hospital, I looked back at it through the car windows, streaked with the dreary rain, and it just looked like such a beautiful haven to me. So this isn’t a good picture, but I love this house. I’m so glad to be here tonight where I spent the evening surrounded by my kids and dogs, and where I’m about to climb into my own bed.

Goodnight all! From our home to yours.

Back to the Hospital 4/25/19

 

It’s Today

Written Tuesday, April 23, 2019:

Winnie the Pooh: Christopher Robin, what day is it?
Christopher Robin: It’s today.
Winnie the Pooh: Oh, my favorite day. Yesterday, when it was tomorrow, it was too much day for me.

So although it didn’t go exactly like we had hoped, we did get home for part of Easter weekend. The very beginning was super bumpy, and we were way, way too tired to cope with it well. It went like this:

We didn’t manage to finally arrive home Friday until about 6:30 that evening, and within about fifteen minutes, Lilyan was running fever again. We came through the door, kissed the tops of all our little ones’ heads, said quick hellos to the older ones, tried to assess Lilyan’s condition,  and then our home nurse was at the door for our final PICC line refresher course.

The fever continued to climb a bit, and at that point, our fatigue was so great that we just couldn’t bear the thought of having to take her back in to the hospital again immediately.

The good news was that we had a nurse in the house so they allowed her to just assess things there and determine that Lilyan’s back wound and her PICC line were both fine.

The bad news is that all of this took hours, and this very kind and patient nurse didn’t leave our house until close to 9:30. So we never really even got to talk to our kids at all that night, and we were up until close to 1:00 am getting Lilyan all settled and completing her final antibiotic dose, which had to be done through her PICC line.

In the middle of the disappointment that we had completely lost our first evening as a family, and the mental and emotional fog resulting from our fatigue, the world felt very black and the future looked really hopeless. I remember my weary, cloudy brain processing on some level that I shouldn’t pay too much attention to those feelings under the circumstances, but when we finally fell into bed and drifted off to sleep, I didn’t see how I could muster the energy to do one more day. And especially not with an upbeat attitude for our watching weary and needy kids.

But that was Friday. Lilyan’s fever went down that night and stayed down all through Saturday.

And Saturday was a wonderful day filled with healing and laughing and hugs and connection and fun.

I’ll wait and let the pictures below tell that story more fully in a minute, but we ended that night with pizza and a movie – “Christopher Robin,” starring Ewan McGregor. At one point near the end of the movie, Winnie the Pooh and Christopher Robin have a little conversation. That’s where my opening quote is from. And it struck me, during those lines of the movie, that this was exactly how I had felt on Friday — before Saturday had become today. It was just too much for me, but I had no idea what a wonderful day was waiting for us once Saturday became today.

And then I thought about Jesus’s disciples as they moved through that sad weekend after their dear friend — their Lord — had been so brutally killed. The future was just too much to even think about because they didn’t understand how the whole world was about to change when Sunday came. And it all seemed, somehow, so poignant to me in that moment. In front of our TV. Surrounded by my precious, precious family. Listening to Winnie the Pooh speak words of wisdom.

Sunday was also a wonderful day. Well . . . initially anyway.

There was no way for me to pull together our typical Easter dinner this year, so, after a warm and intimate Easter worship service in our family room, we chose to use a generous and unexpected gift from dear friends to order Chinese to be delivered to our door.  It’s probably not an Easter dinner we’ll ever forget.

Sadly, as we were eating our dinner, Lilyan complained of a headache and just generally not feeling well. We checked her temperature, which was 103º, quickly repacked our only-partially-unpacked bags, and headed to the Emergency Department at Children’s. We were still very, very tired, and definitely disappointed that our time together had been cut short. But we were also feeling refreshed in spite of still being tired, and the main thing we all kept feeling was thankful. We were all so grateful that we had been able to have those very special times together before having to head back to what is beginning to feel like a home away from home.

After sitting in an exam room in the ER for four and a half hours, they finally admitted us, and there were some familiar faces waiting to greet us on A-3 North.

Once again, Lilyan’s fever came down with Motrin and Tylenol, and stayed down all night. She had surgery the next morning (Monday, April 22). Although everyone expected, after Sunday’s high fever, for things to look a bit yucky inside her back again, it looked surprisingly good. Not good enough to close the wound, but also not bad enough to explain the high fever.

There have been a couple more fevers since then, lots and lots (and LOTS!) of back and forth discussions between the teams caring for her, but the bottom line is this

  • All players involved in her care are completely perplexed about these random bouts of fever, but they have checked and re-checked everything they know to check for now.
  • Everyone is a bit nervous about the fevers because of how critical it is to protect the hardware in her back, but agree that she is healthy and normal in between the bouts of fever and that her back looks relatively good at this point.
  • She is scheduled for another wound clean-out in the OR on Thursday.
  • Because they know that we will watch her closely, that the Liberty Children’s campus is only ten minutes from our house in case of an emergency, and that we will get her in immediately if she should ever have a fever that doesn’t come down with the combination of Tylenol and Motrin, they have agreed to let us go back home and monitor things from there. We should be leaving sometime this afternoon.
  • We will come back on Thursday for surgery, more bloodwork, and close reassessment of everything.

We will try to post an update after surgery on Thursday. For now, though, the (many) pictures and captions below paint a much better picture of how great our day-and-a-half was at home for Easter weekend.

Lilyan Home for Easter Weekend #1

An exhausted and feverish Lilyan patiently waiting while our kind home nurse cared for her PICC line Friday night when what we all really wanted was to just spend time together.

Lilyan Home for Easter Weekend #2

Saturday morning dawned with new hope and energy, and we all enjoyed some egg decorating, using a whole new method that involves Cool Whip and food coloring.

Lilyan Home for Easter Weekend #3

Kathryn was so, so happy to have the whole family together again for awhile

Lilyan Home for Easter Weekend #4

Granddaughter Jhannel thought this new way of doing eggs was so great because it’s also tasty

Lilyan Home for Easter Weekend #5

Lots of cute pictures of all of the kids, but I’ll limit it to these few. I thought this one of Nolan was super cute

Lilyan Home for Easter Weekend #6

Success!

Lilyan Home for Easter Weekend #7

Our Saturday evening viewing of “Christopher Robin.”

Lilyan Home for Easter Weekend #8

After the younger ones were in bed Saturday night, the older ones helped fill the eggs for hiding the next day, and . . .

Lilyan Home for Easter Weekend #9

. . . helped us fill baskets for morning

Lilyan Home for Easter Weekend #10

Once ALL of the kids were in bed, Scott and I got the table ready for morning. This included boxes of very special chocolate for our awesome older kids, along with the baskets for the eight youngest

Lilyan Home for Easter Weekend #11

Sunday morning, and here they come!

Lilyan Home for Easter Weekend #12

Lilyan was so, so happy to be home for this!

Lilyan Home for Easter Weekend #14

After our home worship service, Lilyan got a good hair-washing, followed by some sister-love from sisters who have missed her so much.

Lilyan Home for Easter Weekend #15

Then it was time for an indoor egg hunt since it was so muddy outside. We learned, from a friend, of this great idea for children in wheelchairs. Helium balloons tied to eggs make it possible for kids in wheelchairs to grab the balloon strings and get their own eggs. Owen and Jaden opted to crawl through the house looking for harder-to-find eggs, but this was great for Kathryn and Lilyan.

Lilyan Home for Easter Weekend #16

Pure chaos reined for awhile as they all hunted for eggs, some of which had been hidden in some pretty creative places by our older kids.

 

Those sneaky sibs even used tape sometimes!

Lilyan Home for Easter Weekend #16

More “hidden” eggs with balloons

Lilyan Home for Easter Weekend #17

Jhannel had so much fun

Lilyan Home for Easter Weekend #18

Kathryn was so proud of herself when she grabbed her first balloon/egg.

Lilyan Home for Easter Weekend #21

Those guys even hid one inside a balloon!

Lilyan Home for Easter Weekend #22

Nolan found one behind a photo

Lilyan Home for Easter Weekend #23

Carlin helped Lilyan find her last two

Lilyan Home for Easter Weekend #24

All of the balloons gathered on the ceiling after the hunt was done

Lilyan Home for Easter Weekend #25

Our non-traditional Easter dinner, served on disposable plates

Lilyan Home for Easter Weekend #26

Oh no! Fever! Back to the hospital.

Lilyan Home for Easter Weekend #27

Four-and-a-half-hour wait in the ER before finally getting a bed on her normal floor

 

 

 

Amazing Surprise Gift

Sometimes God sends us little unexpected gifts out of nowhere. He did that this afternoon.

All of our doctors talked together and decided that we can take Lilyan home for a little break this weekend! Even though she ran her typical 36-48 hour post-op pop-up fever at midnight last night. It’s a big deal to make this all happen because of her PICC line and her wound VAC, but everyone here knocked themselves out getting home supplies lined up insurance approval for everything. They really wanted Lilyan’s family all together for Easter. So sweet!

There are some stipulations:

  • We have to back in on Monday for another surgery.
  • We had to agree to get her straight to the ER for blood cultures if she runs any fever at all over the weekend because.
  • Each team took turns stopping by to tell us, over and over again, just how precarious her whole situation is, how things could turn dangerous very quickly, and stressing all of the things we need to watch for.

But we feel like we have developed a much better understanding of what we are dealing with now as we’ve walked through these last two weeks.

So after we get our PICC line refresher course late this afternoon (it’s been  few years since we went home with a PICC line in place), we will head home and meet another PICC nurse at our house so we can prove to her that we know what we’re doing.

It’s not much time together, but Lilyan will be able to dye eggs with her siblings tomorrow, do another little party tomorrow night (because having a party is always a good idea!) and we can all spend Easter together. We are indescribably grateful for this little break in the middle of this ongoing drama.

We don’t know anything past surgery on Monday. We’ll have to wait until we hear what they see during surgery that day before we know where plans go from there. We will return with packed bags, prepared for another stay here, and keep taking things one step at a time.

The kids have a meal coming to them Monday night, and some of you have asked if we need more. We will let you know as soon as we hear the plan after surgery that day. Thank you, thank you for even asking! Our hearts are full.

One new item for prayer. Scott has pulled a muscle in his back during all of the lifting of Lilyan over the past month. We need Dad in top-notch condition because this isn’t over yet, so please pray that some TLC at home this weekend, where we have older kids to help out, will provide healing time for his back.

Happy Easter to you all! It’s a beautiful weekend for the surprise of being able to celebrate together the most beautiful gift ever given to the children of God.

“No scene in sacred history ever gladdens the soul like Calvary’s tragedy. Light springs from the midday-midnight of Golgotha, and every herb of the field blooms sweetly beneath the shadow of the once accursed tree. In that place of thirst, grace hath dug a fountain which ever gusheth with waters pure as crystal, each drop capable of alleviating the woes of mankind. Thus Calvary yields us comfort rare and rich.

We never should have known Christ’s love in all its heights and depths if He had not died; nor could we guess the Father’s deep affection if He had not given His Son to die. The common mercies we enjoy all sing of love, just as the sea-shell, when we put it to our ears, whispers of the deep sea whence it came; but if we desire to hear the ocean itself, we must not look at every-day blessings, but at the transactions of the crucifixion.

He who would know love, let him retire to Calvary and see the Man of sorrows die.
~
Charles Spurgeon

“And when they had come to the place called Calvary, there they crucified Him.” Luke 23:33

All Done - Let's Go Home for a Break 4/19/19

Just finished her little sewing project, so let’s take a short break and go home!

 

Fifth Surgery is Behind Us

Written Wednesday, April 17, 2019:

Lilyan started running fever again just a couple of hours after my last post. Just like with her fever on Saturday night, it didn’t really knock her down like her previous fevers had done, and we were inclined to think that maybe they were just her body’s response to surgeries — Saturday night’s fever to her Friday surgery, and Monday evening’s fever to her Sunday surgery. Most of the doctors agreed with us that this was probable, so no one was overly worried about them. But things changed a bit yesterday.

We had just started to hear some whispers about possibly sending us home on Thursday if all went well in her surgery today (Wed). But very suddenly around 6:00 pm yesterday, her heart rate began to climb, and then her fever started going up. She ended up with a headache again and curled up in bed, feeling miserable. It was like we had backed up about five days, and it was so very disheartening. And worrisome.

She is still being treated with an antibiotic for the original organism found back on April 9. They identified two other organisms in her next surgery two days later, but one of these never grew anything in the culture and turned out not to be a big deal. The other is a pathogenic yeast (which means it can cause infection — and it has in her case), and it has turned out to be a much bigger concern. They are treating this with an anti-fungal medication. These organisms are fast-growing and really tough to fight.

Some of her doctors had already been to our room to talk to us earlier in the day, to help us gain a clearer picture of this new world we find ourselves in now. One of the things we are learning is that a wound infection is a big deal. A wound infection with metal hardware in your body at the site of the infection, is a whole different dimension. One of the biggest concerns about this is the possibility of the organism that is causing the infection attaching itself to the hardware. If this happens, it can form a film or a kind of barrier that allows it to seal itself off from any antibiotics or anti-fungals, making it almost impossible to fight the infection. This can become very serious very quickly, and if the infection can’t be gotten under control, it can become necessary to remove all of the hardware in order to clear up the infection and then try to start all over again with new hardware at a later date. And of course, the worst fear is that the infection will enter the bloodstream, which can result in death in 40-60% of cases.

So when she got so much sicker yesterday, there was immediate concern that this yeast might’ve started attaching to the hardware in Lilyan’s back. We were anxious for her surgery this morning so that we could, hopefully, get some answers.

There was good news and bad news. The good news was that there doesn’t seem to any thing attaching to her hardware at this time. Apparently, the surgeon should be able to  see a kind of sliminess to the hardware if this is beginning to happen, and she didn’t see anything like this.

But there also wasn’t as much healing as she had hoped to see, and quite a bit of dead tissue and just general “yuckiness” in the wound again. They did a more aggressive cleaning out this morning and took more samples, but they couldn’t close her up yet with things looking like they are. These samples showed quite a bit more yeast in spite of the treatment she is getting, and we feel like all of this explains her steps backward yesterday.

So where does this leave us? That’s the big question.

Everyone agrees that we can, at some point, go home even with the wound VAC in place.  They also placed her PICC line yesterday so that she can continue to get her IV  antibiotic treatments at home. Her antifungal is an oral med. They want her to start by taking both of these for about a month, but they have warned us that sometimes it takes, weeks, months, and even years of medications to get kids through an infection like this where there is hardware involved.

But these fevers are worrisome, and the Infectious Disease doctors are especially concerned about letting  her go home until they feel like they have them under better control. They will be back to talk to us again in the morning about where we should go from here. If she runs another fever this evening or tonight, they want to order blood cultures again.

Surgery is planned again for Monday, and this pattern is likely to continue about twice a week until things are healed enough to close her wound. So we will keep trying to take this one step at a time, while also continuing to pray that God will soon bring our family back together where we can all draw strength and comfort from each other as we face what we are beginning to understand is probably a very, very long road ahead of us.

A couple of pictures from today. Lilyan woke up this morning, not looking forward to surgery again, but she was excited to take her new Minnie Mouse with her this time. And she is definitely not as afraid as she used to be now that she has had so many of these shorter surgical procedures.

Surgery #5 4/17/19 #1

Early morning, pre-surgery bed-hair

And late this afternoon, a package from a Sunday School class at our church was delivered to our room. Lilyan was visibly touched by this sweet, sweet gift. We are continually aware of just how blessed we are by such a loving support system. Thank you all.

Surgery #5 4/17/19 #2

Post-surgery hair bun and package of love

 

Quiet and Blissfully Uneventful Day

Written Monday, April 15, 2019:

We are feeling more physically tired, but less emotionally spent than we did yesterday.

I spent the morning searching for some spring/Easter craft ideas, and reached out to my artsy friend again. She and Robyn have taken those ideas, communicated with each other, and managed to coordinate a couple more fun craft days with the kids at home. This has brought so much comfort to my mind and heart as I try to divide my attention between hospital and home. Now that I know they have these fun things to look forward to doing over the next few days, it has made it easier for me to just relax into hospital life and settle into a routine here with Lilyan as we move through what we pray will be our final days here.

Lilyan didn’t run fever again last night or today, and she seems healthier practically by the hour. This is so, so great to see and brings us such joy. Her next surgery is planned for Wednesday, but we don’t know what time, yet. We continue to pray that things will have healed enough for her doctor to close up her wound and remove the wound VAC, but they have assured us that, even if she can’t, they will be able to send us home with a wound VAC in place before much longer now that she is doing so well. It will mean more trips back here for other surgeries, but we can do that.

Lilyan’s final post-adoption report for China is due, and Scott spent the day working on that. As we filled out forms and went through old photos for this report, it suddenly occurred to us that this will be our last post-adoption report for anyone — forever. This is the official closing of a really major and precious chapter of our lives, and as much as I hate doing post-adoption reports, this brought a lump to my throat and a few tears. What an amazingly beautiful and agonizingly tough two decades this journey of adoption has been for us. I am amazed as I look back at those years, and it makes me anxious to finish our next book and share “the rest of the story” that follows our first book. Maybe soon. God truly does write the most incredible stories!

Lilyan spent the day learning to sew some simple stitches. She loved this little kit we got from the gift shop downstairs, and it was so fun to just have the time to enjoy doing this with her. What a blessing. I’ll end with a few pictures of her experience and, unless something unexpected happens tomorrow, I probably won’t update again until after her surgery on Wednesday.

Blessings to all!

Learning to Sew 4/15/19 #1

Getting started

Learning to Sew 4/15/19 #2

She took to this pretty naturally

The Faces of Concentration Collage 4/15/19

Her facial expressions as she worked and thought so hard were so fun to watch – “The Faces of Concentration”