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IN GOD’S HANDS A mother’s journey through her infant’s critical illness

Elissa D. Bjeletich

ANCIENT FAITH PUBLISHING Chesterton, Indiana

In God’s Hands A mother’s journey through her infant’s critical illness Copyright © 2013 by Elissa D. Bjeletich All Rights Reserved New Testament quotations are taken from the New King James Version, © 1979, 1980, 1982 by Thomas Nelson, Inc. Used by permission. Old Testament quotations are taken from the Orthodox Study Bible, © 2008 by St. Athanasius Academy of Orthodox Theology. Used by permission. Published by: Ancient Faith Publishing (formerly known as Conciliar Press) A Division of Ancient Faith Ministries P.O. Box 748 Chesterton, IN 46304 Printed in the United States of America ISBN 10: 1-936270-65-X ISBN 13: 978-1-936270-65-1

For You alone, O Lord, cause me to dwell in hope.

(Psalm 4:9) Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. (Phil. 4:6â€“7)

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CONTENTS

Acknowledgments • 7

Introduction • 9

What Happened? • 13

Mariana’s Story • 17

Postscript • 219

A Note on Organ Donation • 221

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Acknowledgments I would like to thank: Marko, my adorable husband and steadfast partner in every endeavor, and our five daughters—Andja, Vasi, Helena, Stefanja, and Mariana—and the family and friends who support and love us. Drs. John Goss, MD, FACS, and Christine O’Mahony, MD, who deftly transplanted our daughter’s liver and sewed her up tight. Dr. Douglas S. Fishman, MD, and Julie Economides, RN, BSN, and the excellent Liver Team and nurses and staff at Texas Children’s Hospital, who kept her alive for us and shepherded her back to good health. All of those who prayed for Mariana and for her family, may God bless you and grant you what you need.

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Introduction We have a large family, Marko and I. In truth, we have seven children, although a few of them await us in heaven. Our first two children, daughters, were both born healthy, their births uneventful. Our third, another little girl, came unexpectedly in the middle of the night, right in my own bedroom with no proper notice. She surprised us with her sudden arrival on the scene and with her cleft lip and palate, a facial defect we didn’t expect. We worried so much about that bright little girl, shepherding her carefully through her surgeries and learning to appreciate every surprise she brought into our home. We debated having a fourth child, concerned that we might see another cleft defect but wondering what kind of message we’d send our little girl if we let that stop us. We took a deep breath and risked it. We were rewarded with a beautiful, healthy son. Our Luka was a delight and rounded out our happy family. On his forty-fifth day I laid him down for his afternoon nap, and when I went to check on him, he was dead. Sudden Infant Death Syndrome. Marko and I were utterly torn to shreds. In the darkness and devastation that followed, we turned to one another and to our Holy Orthodox Church; we turned to God. That year was dark and terrible, but we prayed and we held on, and we parented our three daughters, and we survived. I cannot count how many times I sat in the darkness, empty and Sample pages only. Purchase the full book at http://store.ancientfaith.com/in-gods-hands/

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hollowed out and terribly, terribly sad. When the darkness simply became too much to bear, I would cry out to the Lord, and every time He lifted me up and put me back together. I often went down into that pit of which the psalmist sings, and each time, He called me back out into the sunlight like Lazarus. During that terrible year, I learned to clutch at His hand. I learned not to let go. Marko and I had always wanted a big family, and now we faced the question squarely. Could we bear to have another child? How many naps would we be forced to endure? There is no solid explanation for SIDS, no method to predict or prevent it. Could we possibly parent an infant after losing a child to SIDS without becoming neurotic messes? But on the other hand, how could we stop here? How could we let death intimidate us into saying no to new life? The Lord who resurrected us so often surely wanted us to embrace life. We tried again. Our fifth child was another sweet, healthy girl. I forced myself to insist that sleep was a beautiful and restorative respite, not an ominous invitation to death. Marko and I watched her sleep for that first year, searching for signs of life. And what a cooperative spirit God sent her! Every time we froze in fear that she’d stopped breathing, she’d let out a sweet coo or toss her leg to the side as if she knew we needed that reassurance. Surely her guardian angel (or mine) was poking her as she slept. I learned to transform my worries into prayers of gratitude: every time I feared she had died and saw she was alive, I would make the sign of the cross and thank God for this great blessing. I was praying my gratitude to the Lord all the time, and those prayers were transforming. Just a few years later, it was time to welcome another child. Marko and I were overjoyed to learn I was pregnant again, and on a visit to the extended family, we joyously announced another baby was on the Copyright © 2013 by Elissa D. Bjeletich. All Rights Reserved. Published by Ancient Faith Publishing.

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way. On our flight back home to Texas, however, I knew the pregnancy

had failed. I began to miscarry, and we understood that another of our children had joined Luka in heaven. This one we named Jo, for either Joseph or Josephine; we’ll just have to wait a while to meet this little spark of light that left us too soon. The very next month, I became pregnant with Mariana. The early days of this pregnancy were marked with worry and concern, the ugly legacy of miscarriage. But Mariana hung in there and the pregnancy proceeded well, and we began to make plans to welcome our fifth baby girl, our seventh child. As her due date neared, I began to realize this little girl might very well be born on our Luka’s birthday. I wrestled with this, concerned I’d worry even more about her because of the coincidence. Happily, she came the day before, healthy and sweet. In our beloved Orthodox Church, we baptize our babies after they’re at least forty days old, welcoming them as full members of the Body of Christ. When Luka was forty days old, we brought him to the church just as Christ had been presented at the temple on His fortieth day. We read beautiful prayers and blessed him, but we did not baptize him; we waited so we could arrange a big party with all our family and friends. He died soon after, and Marko and I vowed we’d never postpone a baptism again. Our Mariana, born so close to Luka’s birthdate, would be baptized as soon after her fortieth day as possible. As it happened, her baptism fell on the fifth anniversary of Luka’s death. That morning, as all our family joined us, we celebrated a Parastos (a memorial prayer service held on the anniversary of a death) for Luka, and then we baptized Mariana. Sample pages only. Purchase the full book at http://store.ancientfaith.com/in-gods-hands/

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In G od’s Ha n ds We had come full-circle somehow. We had survived five years

without Luka, and we had prevailed over death by bringing new life into our family not once, but twice. We stood in the church that had truly become our home, surrounded by family and friends, with five bright, energetic daughters and two children with the angels, looking on. On that day, I finally felt some closure. I felt healed (or at least, comfortable with the grief that had become a part of me) and complete and at peace. Mariana brought us peace on that day. All was well with the world, thanks be to God. This book is the story of Mariana’s first year. It is her story, but it is really my story as well, because being her mother transformed me. In their own ways, each of our children teaches us new things and causes us to grow in unique ways. Being Mariana’s mom carried me on a journey I didn’t expect and brought me joys I couldn’t have predicted. Along the way, I learned to invite others in and to share the wealth of the journey. Now I’m inviting you. During Mariana’s illness, I wrote a blog intended conveniently to update our concerned friends and family, but mostly to remind them to pray for her. Over time, I found writing helped me to cope and to stay connected to the community support I so needed. This book is a collection of the entries I posted on that blog. Perhaps they can keep you company in a difficult situation.

What Happened? Mariana Markova Bjeletich was born in April of 2010 and seemed by all accounts to be very healthy. By her fourth month, however, her slight newborn jaundice was worsening into a foreboding yellow tone. Blood tests revealed the jaundice was serious, and as we pursued further tests and inquired with specialists, she grew sicker and sicker by the day. There was something wrong with our little girl. For two very long weeks, we watched her blood tests and consulted with doctors; we admitted her to the local children’s hospital and prayed for a diagnosis. Whatever was wrong with her liver was progressing rapidly, and we were losing time. Without a diagnosis, we seemed on track to spiral toward a liver transplant. Marko and I fought the idea of a transplant with all our strength. Accept liver failure? Remove her liver and replace it with another? We didn’t want to face either the uncertainty of being on a transplant waiting list or the fragility of a life post-transplant. We couldn’t bear the idea of losing another child, nor could we wish upon her a future where the dark cloud of organ rejection threatened her at every turn. We were heartsick; we stumbled through those dark days in prayer and fear. One afternoon, one of Mariana’s doctors called with a welcome diagnosis—a good one, which would explain her symptoms and offer an easy fix. Her liver was simply constructing its bile incorrectly, Sample pages only. Purchase the full book at http://store.ancientfaith.com/in-gods-hands/

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creating a toxic bile that was damaging the delicate tissues of the liver. There would be no need for a liver transplant, unless we were unlucky enough to have caught this too late. Basking in the warm hope of a healthy future for Mariana, we hurried to begin cholic acid therapy, which would help her body produce normal bile and allow her liver to recover. Our relief was dampened after just a few days when Mariana developed a fever. Her doctor hurriedly readmitted her to the hospital. The fever could either be a symptom of an infection, which would be difficult to fight in her weakened condition, or it could indicate that her liver had already failed, that the cholic acid had come too late. This time, no one was taking any chances. We were transferred by ambulance to the big city of Houston, where the excellent doctors at Texas Children’s Hospital would know how to help her. They could prepare her for a transplant should that worst-case scenario become our reality. I carried Mariana into the windowless ambulance in the afternoon and emerged hours later into darkness, tired and disoriented, in a strange city late at night. As I rode up the elevator with Mariana’s ambulance crew, we marveled at the hugeness of the twenty-one-story hospital and the crazy hustle and bustle of the big-city doctors at night. The paramedics left us there. Suddenly Austin and my family were a million miles away, tiny and rural and podunk in comparison. Mariana and I had arrived in a totally different world, where unfamiliar faces would be tasked with saving my sweet daughter’s life. I fell asleep on the small bed beside her crib, praying God to stay beside me as I journeyed through strange lands. Even as the Houston doctors evaluated Mariana for transplant and made plans to replace her faulty liver, I held steadfast to the hope that Copyright © 2013 by Elissa D. Bjeletich. All Rights Reserved. Published by Ancient Faith Publishing.

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the cholic acid treatment, the easy fix we’d been promised in Austin,

would come through. I stubbornly waited for it to work, personally administering her doses with a hopeful heart. In the hospital, I grew accustomed to being awakened early by nurses drawing blood and taking vitals, and by residents popping in to ask how the night had gone. About a week into our stay, a resident woke me with a reference to Mariana’s liver failure. I jarred awake, having not yet recognized or accepted that her liver had, in fact, already failed. I asked him about it, inviting the bad news into my heart right there in the cold early morning. From that moment of recognition, there was no turning back. Cholic acid therapy would not work, and there would be no easy fix. Transplant was unavoidable. Throughout the course of that day, I mourned that truth and digested it. Everything turned around for me: Rather than endeavoring to spare my daughter a terrible transplant, I was now eagerly trying to get her on the list, to get her the liver she needed. The dreaded worstcase scenario was here, and I learned quickly to cling to the hope that a new liver would come to my Mariana just in the nick of time. The blog I wrote from Houston tells the story of a mother sitting beside her child’s bedside, trying to help and to hold it all together in a situation where every parent is essentially helpless. The following is my testimony of how God held us in His hands through every moment of it. Amen.

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Marianaâ€™s Story â€˘

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Love One Another. . . • SATURDAY, SEPTEMBER 4, 2010 My daughter is very sick, and a medical review board has convened and determined that her liver simply cannot sustain life. She needs a liver transplant. That means that somewhere a family faced with the unthinkable death of their own child will be asked to generously and mercifully donate their child’s organs. I’ve lost a child (although Luka’s organs were not eligible for donation). I know how that feels, and I cannot tell you how much it moves me to think of their predicament, and how much it astonishes me that parents can make the choice to give life to other children at the very moment when their own child dies. What a moment to ask them for this gift—to ask them for anything! These parents step outside of themselves and show love to people they’ve never met, to parents sitting vigil in quiet rooms, praying for miracles. Today, we sit patiently and wait to receive the greatest gift—literally, the gift of life—from someone we’ve never met. We are totally dependent on the kindness of strangers. And we’re seeing the kindness of all sorts of people these days. This hospital teems with kind nurses and doctors, friendly janitors and volunteers. I am making all sorts of new friends. We have visitors who bring lunch and goodies and friendly conversation. Marko is home

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with our girls, and the ladies from church are loading him up with dinners and treats. Friends have taken the kids for an afternoon or an evening so that Marko can get some work done or some time to himself. And most importantly, so many people are offering prayers for Mariana’s health and for comfort and strength for her family. When Mariana was placed on the waiting list for a liver transplant, I knew I’d be learning patience, but as I sit here, I am coming to understand the real lesson God is offering me: It is time to stop trying to do everything myself, time to rely on the kindness of strangers. • • •

Good Days • S U N D AY, S E P T E M B E R 5 , 2 0 1 0

It’s wonderful how quickly our perspective changes, how we adjust to a new normal overnight. What constitutes a Good Day right now would probably have looked fairly bleak to me a month ago, but today I’m grateful for these Good Days. One of the hallmarks of liver disease is a distended belly—Mariana’s abdomen is huge, partially because her liver and other organs are oversized, but mostly because water is leeching out of her organs and veins. (Albumen, the protein that should be keeping this from happening, is in short supply because that liver of hers is pretty lazy.) Last weekend, this full abdomen pushed and pushed on her little stomach, and she was vomiting all the time. This week, she had a PICC line Copyright © 2013 by Elissa D. Bjeletich. All Rights Reserved. Published by Ancient Faith Publishing.

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installed, which is a more stable IV running through her arm to veins nearer her heart, so she now receives intravenous nutrition—we don’t have to pump her full of formula, so now the vomiting has subsided.

After a few peaceful days of celebrating that Good News, we had some days (and long nights) where the fluid in her belly was building up fast and crowding her lungs. She’d have difficulty breathing until we were able to relieve the pressure by giving her a fast-acting diuretic through IV infusion. We spent a few Bad Days trying to achieve the delicate balance—enough of this medication, not too much of that one—and now we are basking in the relative calm of a few days where the balance is pretty good. She’s mostly calm and comfortable, her belly growing ever so slowly until we give the next dose and bring it back down. In this “new normal” that is a very Good Day! I’m grateful that I can still hold her. She is attached to plenty of tubes and cables (although I almost don’t want to say that, because I’m quite sure this is a light load compared to what we’ll see in coming weeks), but as long as her belly isn’t so distended that it’s making her uncomfortable, she and I both enjoy it when we drag her IV tree over to the couch and snuggle for a while. She still takes a bottle here and there (though her appetite is very low). She’s still a normal little sweet baby, underneath all that tape and all this apparatus connected to her, and she still smiles and plays. In the past few days, the big game is peek-a-boo. She takes any textile she can get her hands on and holds it over her face—she loves her new ability to hide from us and misses no opportunity to do it. Developmentally, I think her cognitive skills are still on track. After the transplant (God willing!), we’ll deal with some delays in gross motor skills (there will be no sitting or crawling in the coming Sample pages only. Purchase the full book at http://store.ancientfaith.com/in-gods-hands/

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months), but I think all of it will be resolved by the time she’s two or so. Marko and the girls came to visit us last night. I took the girls to dinner. I drove them in the car to a restaurant and went out in the world like a normal person! That’s an amazing experience for me now. My family is far away, and I have no car here. I am always in this room, watching over Mariana. It had been a long time since I’d been among normal people doing normal things, and of course, it lasted less than an hour. It is so good to spend time with my girls. Marko is doing a fantastic job of keeping them on track with school and their various activities, but I’m so removed from all of that now (quite literally). Marko makes their trips to Houston feel like adventures; he always makes sure they stay in a hotel with a pool and take plenty of time to enjoy it. I hope that in years to come, they’ll remember this as merely an interesting time. I am amazed to hear of all the prayer lists Mariana has joined, all of the people we’ve never met who are lifting her up in prayer. It is breathtaking to be part of this beautiful community, Christ’s Church. It is beautiful how, when bad things happen, people come together. With one little sick baby inspiring so much prayer and kindness, we can easily see how God turns sad circumstances into stunning victories. All of these people praying for her, often unaware of one another, are praying together for a common cause. They are united in Christ, whether they know it or not. How nice to be part of God’s Kingdom, right here on earth. • • •

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Our Personal Pascha •

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M O N D AY, S E P T E M B E R 6 , 2 0 1 0

It has been such a nice, long weekend. Mariana is fairly stable, so I could relax a little bit. I had visitors this weekend: my family and some friends from home who were in town (or passing through it) for the holiday. It was really a nice break. Now Marko and the girls are headed back to Austin, and the hospital is very quiet. The long holiday weekend should make me think of picnics and parties, but tonight it’s making me think of boating accidents and car crashes. I don’t like to think like that. I don’t pray for a liver. I pray for patience, and I pray that Mariana has a long and healthy life, but I don’t pray about livers. I sometimes say that I pray for God to send families faced with that decision a spirit of love and generosity, but the truth is that I’m not even comfortable doing that. I am staying out of it, I guess. I am just sitting quietly, waiting in the stillness. I find it amazing that transplants work. It is amazing that you can cut out a bad liver and plug in a good liver, and it will work! Wow. The human body is wondrously made. It is amazing that people are so generous that they routinely donate good organs. Wow. People are good. I have to remind myself that waiting for a liver is not just about waiting for someone’s child to die. The truth is that there are several children waiting to die, including mine, and perhaps, if we are lucky, someone who has already irrevocably lost their child will make the choice to save one of those other lives. I keep thinking about a hymn we sing on Great and Holy Friday:

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we say that Christ “tricks the trickster.” I always love explaining it to my Sunday school students. Ever since the devil tricked Adam and Eve in the Garden, he’s been collecting human souls at the end of their mortal lives, locking them in Hades. On this day, he sees God’s own Son hanging on a cross and believes that he is about to imprison God Himself. And so Christ is wrapped and placed in a tomb, locked into Hades with all the others. The devil is delighted that God was fool enough to take on a human body and to allow Himself to be locked away. And then—Christ rises and breaks open the gates of Hades, liberating all those locked away inside. The devil remains there, empty-handed, as Christ triumphs over him and sets us free. That image of Christ’s triumph over death is in my head all the time as we wait for a transplant. There are children dying, their organs are giving out, and death is ready for them. He expects all of them soon—but wait! One child, as he dies, leaves behind organs for the others, and death is helpless to stop it. It’s like we’re tricking death. A few people have asked me where the Church stands on transplants, and here it is: The Orthodox Church encourages the faithful to donate organs, extending the life of a fellow human being. The Church stipulates that organs should be donated only for therapeutic purposes, to persons requiring healing, and should not be used for scientific experimentation. Naturally, organs should not be sold, nor should they be taken from an unwilling donor or taken early, so that the donor’s life is cut short. As long as respect for life, for the donor, and for the organs is always maintained, the Church approves of organ donation. Funnily enough, I didn’t need that to know where the Church Copyright © 2013 by Elissa D. Bjeletich. All Rights Reserved. Published by Ancient Faith Publishing..

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stood on the gift of life. We celebrate when love overcomes death! Every year at Pascha (Easter), in our Orthodox churches, our priests deliver again the sermon first given by St. John Chrysostom back in the fourth century, celebrating Christ’s triumphant Resurrection: Let no one bewail his poverty, for the universal Kingdom has been revealed. Let no one weep for his iniquities, for pardon has shone forth from the grave. Let no one fear death, for the Savior’s death has set us free. He that was held prisoner of it has annihilated it. By descending into Hell, He made Hell captive. He embittered it when it tasted of His flesh. And Isaiah, foretelling this, did cry: Hell, said he, was embittered when it encountered Thee in the lower regions.

It was embittered, for it was abolished. It was embittered,

for it was mocked. It was embittered, for it was slain. It was embittered, for it was overthrown. It was embittered, for it was fettered in chains. It took a body and met God face to face. It took earth and encountered Heaven. It took that which was seen and fell upon the unseen.

O Death, where is thy sting? O Hell, where is thy victory?

Christ is risen, and thou art overthrown! Christ is risen, and the demons are fallen! Christ is risen, and the angels rejoice! Christ is risen, and life reigns! Christ is risen, and not one dead remains in the grave.

For Christ, being risen from the dead, is become the first-

fruits of those who have fallen asleep.

To Him be glory and dominion unto ages of ages.

Amen.

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In G od’s Ha n ds Truly, if Mariana receives a new liver, that will be our personal

Pascha. However all of this turns out, we are in His hands, and I know that there is no better place to be. Christ is risen! • • •

Weight • M O N D AY, S E P T E M B E R 6 , 2 0 1 0

For several weeks, Mariana’s weight was 5.9 kg. She didn’t gain, she didn’t lose. She just stayed there. The ideal minimum weight for a transplant patient is 7 kg. (That’s about 15 lbs.) They’ve done plenty of transplants for patients who weighed less, but somehow the numbers show that they just do better if they weigh 7 kg or more. In the past week or so, we’ve been pumping Mariana full of calories and nutrients, and now her weight is hovering at 6.5 kg. We’re getting there! Of course, there’s no telling how much of that is water weight, but at least most of it seems to be actual growth. Hallelujah!

•

I met Dr. John Goss, the surgeon who performs all the liver transplants around here. He’s a legend, having performed over two thousand liver transplants. That’s what you want: a surgeon who has done this so many times and seen so many livers, a doctor who knows what he’s doing. He’s a friendly guy, and very honest. I asked about Mariana’s odds

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of survival, and while he avoided saying anything too depressing, he refused to say anything that wasn’t true. He’s done transplants in babies before, but she’s very small and very sick. I asked about the survival rates for the tiniest ones, and he said he hadn’t lost a baby in a

long time—but then he reflected on it for a moment and clarified that he may be due to lose one soon, and he couldn’t promise me that it wouldn’t be mine. I’m grateful for his honesty. Naturally, it would be nice to hear that no one ever dies from liver failure, but it’s better to hear the truth and to know that we’re rising to the occasion and looking at the situation squarely. We are doing everything we can do, and we are praying that it is enough. Everything is in God’s hands—it always is, but we don’t always see it. At a time like this, we can finally see the truth: God is in charge, and we must wait and know that He’ll take care of us, come what may. • • •

Still Here • T U E S D AY, S E P T E M B E R 7 , 2 0 1 0

I am surprised to say that we’re still here, still in our quiet room on the twelfth floor. Last night, Mariana had a Very Bad Night, and I started packing up—I thought for sure we’d be moved to the seventh floor (Progressive Care, which is like a junior Intensive Care Unit). Yesterday evening, in an effort to fatten this baby up, I fed her some applesauce. She didn’t want any, so I stopped after about two

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tablespoons. Fifteen minutes later, she started vomiting up bloodtinged applesauce, and I went into high gear, calling the nurses and getting help. At the time, the resident on call and I decided that it wasn’t blood after all. But two hours later, when she did it again, it looked bad again, and we sent a sample to the lab. Blood. Ever since Mariana was diagnosed, doctors have been telling us to watch for difficulty breathing and blood in vomit, as they signaled life-threatening trouble. So now we’re here, at this next stage of liver failure. We announced this new development to the doctors, and I expected some big activity, but everyone just nodded. It’s not so much an emergency as a milestone. Now we know. We’ve reached this part of the liver failure, and now we’ll live with additional concerns and dangers. That’s all. Around 2:00 am, her breathing began to worsen and eventually became so bad that the residents on call pulled an alert—they weren’t sure what to do with her, so they called in the Rapid Response Team. Within moments our room was filled with maybe fifteen ICU doctors and nurses, evaluating her for ICU. Every surface in our once-peaceful room was covered with tubing and tape and paperwork; the icons were cleared to open up the oxygen cabinets I hoped we’d never need; and Mariana was strapped up to every monitor they could find, with an oxygen tube pumping oxygen into her tiny lungs. It was lousy. But here we are this morning, still on the twelfth floor, our room almost back to normal. Mariana is off the oxygen and doing fine, and no one really knows what the heck happened last night. We’ve resuscitated the fear that she has an infection. You may remember that we first came to this hospital on antibiotics, searching

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fruitlessly for an infection. We’re back to that now. I’m thrilled that

she’s back on antibiotics. Not only does she just tend to do better on them (anti-inflammatory benefits, perhaps?), but if a liver comes available to her, they’ll test her to check for infection, and if she has an infection, she can’t have the liver. She’d have to wait for the next one. So now, if there’s something growing in her, hopefully they’ll kill it or keep it at bay so that it can’t surprise us and interrupt a liver transplant, should we find ourselves in that enviable position. So, this morning, I am grateful to find the same baby I saw yesterday morning, in the same bed in our peaceful room. Thanks be to God. • • •

Peace • T U E S D AY, S E P T E M B E R 7 , 2 0 1 0

Happily, today passed without any of the fanfare of last night. Mariana slept peacefully for most of the day, until late in the afternoon when she actually smiled and played with me. Her breathing is more rapid than it used to be. What the doctors are calling “baseline,” or normal, today was cause for alarm just a few days ago. They have reminded me a few times today that this will get worse before it gets better. They don’t put you on a transplant list if they think you’re going to improve. It is one thing to accept that reality intellectually and entirely another to watch it happening. Today was a peaceful day for Mariana, but a harder day for me.

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Those days when I am adjusting to a new normal are the hard ones. I did receive a gift today. A friend sent me a Bible verse that I really needed: Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. (Phil. 4:6–7) Throughout this ordeal with Mariana, there have been times when someone will comment that I seem “strong” (clearly on good days only!) to them, and I have clumsily tried to express that somehow God has provided this “strength.” But here in this verse from Philippians, St. Paul expresses exactly what this is: it is the peace of God, which surpasses all understanding, guarding my heart and mind through Christ Jesus. That is exactly what it is. How wonderful to finally have the words to say it! Thanks be to God (for the words and for His peace)! • • •

So Far, So Good • W E D N E S D AY, S E P T E M B E R 8 , 2 0 1 0

Today has been a quiet day for Mariana. She actually smiled and played for quite a while, and ate two meals of bananas and rice cereal. Lately, she doesn’t eat much and she rarely keeps her food down, so this is one

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of those small victories that make the days brighter. She is sleeping well right now. Her breathing is speeding up again, so there’s probably a diuretic treatment in her near future. Today fits nicely into our familiar patterns, so that must mean it’s a Good Day. I have been asking around about the seventh floor and ICU. If Mariana gets worse, we’ll move to the seventh floor, which is the Progressive Care Unit, with a ratio of two patients to one nurse (up here

on the twelfth floor, we are 4:1). Apparently, most beds on the seventh floor are in rooms like this one, with ample space for mom. In the Intensive Care Unit, however, parents can’t stay with their kids. Apparently, the fourth floor is the Ronald McDonald floor, with beds and lockers for parents sitting vigil over their kiddos. I hate the idea of not being able to stay right with her, so I’d really prefer that a liver come in before she gets that sick, please. • • •

A Good Morning! • T H U R S D AY, S E P T E M B E R 9 , 2 0 1 0

We had a good morning today! Mariana is increasingly chipper, smiling and interacting with doctors and nurses (even when they poke her belly). It is so nice to see her happy! We’ll be trying out a new baby formula today. This one is rumored to taste really bad, so we’re going to put it directly into her tube (she has an NG tube—that’s Naso-Gastric, running through her nose directly to

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her stomach). It’s really a handy tube to have. If something tastes bad, we put it in the tube and bypass all taste buds! If she’s gassy, you can (within limits) pull out some gas. Today, she was about to vomit, so I pulled out a little of the stuff in there and she was fine. (Don’t worry—I put it back later.) As I reread this, it dawns on me that this must sound very strange indeed. Well, like I said, it’s all about the New Normal. Mariana’s weight is up a little bit today, and I can see some new pudge in her cheeks and hands. Her weight moves up and down daily, but in general we can say that she used to hover at 5.9, then she moved up and spent a week or so hovering around 6.4, and today she’s 6.6— so maybe we’re moving up toward hovering at something like 6.8? Wouldn’t that be nice! Time will tell, and perhaps this new formula will help. I’ve decided not to worry about what it’s like on the seventh floor or in the ICU. I always tell my girls that they need not worry about the next grade level, because they won’t get there until they’re ready for it. So the next step in Mariana’s care may sound overwhelming to me now, but by the time she needs it, it will feel right because it will be right, and there’s no point in worrying about it today. Meanwhile, I’m making all kinds of “friends” here. The nurses and nursing assistants are mostly great people, and the janitors and the meal ladies—they’re all sort of quirky and fun and they keep me entertained. For instance, the lady who comes through to clean this room every morning has twelve kids, six boys and six girls. I often think I have enough kids now, and then I hear something like that and think, Hey, that could be fun! I was thinking about a song my girls love to sing in the morning—it’s part of a psalm: “This is the day that the Lord has made, I will Copyright © 2013 by Elissa D. Bjeletich. All Rights Reserved. Published by Ancient Faith Publishing.

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rejoice and be glad in it!” It made me look up Psalm 117, and I thought I’d share some of its verses. Give thanks to the Lord, for He is good; for His mercy endures forever. (v. 1) I was shoved and disheartened, that I might fall, But the Lord took hold of me. The Lord is my strength and my song, And He became my salvation. (vv. 13–14) I will give thanks to You, for You heard me, And You became my salvation. The stone the builders rejected, The same became the head of the corner; And this came about from the Lord, And it is wonderful in our eyes. This is the day that the Lord made; Let us greatly rejoice, and be glad therein. (vv. 21–24)

It’s a beautiful psalm, and I love how in the midst of rejoicing about the gift of this day, it speaks of suffering and how God turns it into joy. It’s gratitude not for a day without pain, but rather for the way the pain has been transformed. The stone the builder rejects becomes the cornerstone—this experience right here with Mariana is certainly lousy and sad, but through our Lord, it becomes a blessing. This, right here, is the day that the Lord has made—how wonderful to rejoice in it exactly as it is! We won’t wait for a better day to come along; we won’t postpone our joy. We’ll find joy right here and now, in Christ our Lord. • • • Sample pages only. Purchase the full book at http://store.ancientfaith.com/in-gods-hands/

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Smiling All Day! • T H U R S D AY, S E P T E M B E R 9 , 2 0 1 0

It’s getting into evening, the sun is down—and this little baby is still smiling! [In black-and-white, you cannot tell how yellow she is. She truly was profoundly yellow in person!]

• • •

Looking Forward to the Weekend • F R I D AY, S E P T E M B E R 1 0 , 2 0 1 0

Happy Friday! Life is continuing along in its peaceful rhythm here in Mariana’s hospital room, thank God! Today, she’s cheerful and still gaining a little weight. Copyright © 2013 by Elissa D. Bjeletich. All Rights Reserved. Published by Ancient Faith Publishing.

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We’re tired today, as Mariana kept waking both of us every hour or so last night. She’s adjusting to having milk in her little stomach—and her overcrowded belly makes that fairly uncomfortable. Of course, she can easily make up for lost sleep as she snoozes all morning! I, on the other hand, am up—for better or worse! I am looking forward to seeing our very beloved cousin Mary

today. She is flying out from Los Angeles for a visit. (Believe it or not, this is her second trip to Houston already!) Mary is wonderful company, and she is fantastic with Mariana. I may even take her up on her generous offer to stay overnight here with my little one while I head for a hotel room and sleep. While I’ve adjusted to life here in the hospital, I really love the idea of normal sleep. In addition to the frequent visitors who pop in throughout the night here, it never actually gets dark in this room. Mariana’s monitors glow brightly, and the light pours in from the hall, which is a sort of twenty-four-hour fluorescent brightness zone. The strangest part of being here, though, is the lack of privacy. This room is “private” in that we don’t share it with other patients, but it’s also the workplace of several people. When I duck into the shower, I never know who will be standing over the crib when I come out. Don’t get me wrong—I am so grateful to be here, where all of these people are focused on Mariana’s well-being. We have excellent insurance, which is covering all of this 100% without fuss or complaint. I am so grateful that our little girl has such excellent care and that I can be right by her side throughout all of this. We could not be more blessed! But one night at the Marriott doesn’t sound so bad either. • • •

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This Is How It Feels! • S U N D AY, S E P T E M B E R 1 2 , 2 0 1 0

The liver transplant coordinator called, and they think they have a liver for Mariana! There is a surgeon on her way to check on the liver—she needs to see it to confirm that it is in good condition and of a good size for Mariana. If the surgeon approves the liver, then we’re a go! Meanwhile, Mariana’s nurse and the GI resident on call are on the phone scheduling all sorts of X-rays and tests, all of which are required to make sure that Mariana is in good shape to receive this liver. Mary and I are just sitting here, smiling and cheerful, enjoying this hopeful, festive feeling. Mary had the most wonderful advice for me today. Rather than worry about whether this liver will really be Mariana’s, whether it will be the right size and healthy enough, without damage or lacerations—rather than move our minds to predict the worries of the next problems to surface, we are going to sit right here and enjoy this moment. No matter what comes next, at this precise moment, we are experiencing the first moments of relief when a liver is found. Perhaps this will fail, and we’ll get back in line and do this all over again next time a liver is found. Who knows? But right now, what we know for certain is this: this is how the first step feels! We don’t know if this will go on to the next step, if it really will mean a liver transplant for our girl today, but this is definitely what it feels like to get to the first step. I’m praying for the family that allowed their child to become an organ donor today. Whether this liver is meant for Mariana or not, there is a family somewhere in Texas who made that difficult decision Copyright © 2013 by Elissa D. Bjeletich. All Rights Reserved. Published by Ancient Faith Publishing.

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today and whose child is lost to them. May God bless them and send them comfort and peace! • • •

Still Looks Good • S U N D AY, S E P T E M B E R 1 2 , 2 0 1 0

We don’t expect to have any official word on this liver until at least midnight tonight. At this point, however, it does look like this liver will be very good for Mariana. We are expecting that the transplant surgery will take place tomorrow morning at 5:00 or 6:00 am, God willing. Mary is still here with me in Houston, and Cousin Malena is en route to Austin from California. The girls will be with our friends, Christina and Nancy, until Malena arrives. Meanwhile, Marko will head down here, arriving in plenty of time for the surgery. That’s the plan for now, but as all plans are, it is subject to change without notice. • • •

The Operating Room Is Booked • S U N D AY, S E P T E M B E R 1 2 , 2 0 1 0

The surgeon has booked an operating room for 7:00 tomorrow morning. Until they have their hands on the liver late tonight, we won’t know Sample pages only. Purchase the full book at http://store.ancientfaith.com/in-gods-hands/

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for sure, but so far everything looks favorable for transplant tomorrow. We thank God for all of these developments—all good things come from God. I can’t imagine how I’ll sleep tonight. It’s really a good thing that I am well rested! I am feeling very good for Mariana, but I cannot help but be so sorrowful for her donor. From what I understand, her liver is coming from a child between 12 and 14 months old who was the victim of child abuse. I thank God that this child’s parents made this generous choice, but I am also so very sorry that this child led such a tragic life with such a brutal ending. I know that God will now be giving this child the rest and peace and love that he or she should have always had. This world is such a difficult place. Fr. Dejan just came by and said some prayers for Mariana and anointed her. We are ready for tomorrow, whatever it will bring. This is my prayer tonight and in the morning: O Lord Jesus Christ our God, Who patiently endured the scourging and wounding of Your most-holy Body, so that You might save the souls and bodies of Your people: Look graciously, we beseech You, upon the suffering body of this Your servant, Mariana, and strengthen her to endure patiently whatever You should see fit to lay upon her. Bless the means employed for the working-out of her cure, granting that she may so endure her sufferings in the flesh, that the wounding of her body may serve for the correcting and salvation of her soul. For Yours it is to show mercy and to save, O Christ our

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Father and Your most-holy, good and Life-creating Spirit, now and ever and unto ages of ages. Amen. —“Prayer Before an Operation,” from The Book of Needs I love how, as we face surgery, the Church reminds us that Christ “patiently endured the scourging and wounding” of His body in order to deliver us; surely these wounds will likewise, with God’s blessing, be for the healing of soul and body. Today was the Sunday of the Holy Cross—the ultimate example of how an instrument of humiliation and death is transformed through God’s life-giving power into the instrument of Christ’s victory over death for all time. As with all things, may He transform the sufferings of this child who has died, and the sufferings of our Mariana, into joy and beauty. Through His grace, I am sure He will. I’ve been hearing the most remarkable stories from home. Today at church, during the beautiful procession of the Holy Cross, Fr. Vasileios asked everyone to pray for Mariana as they knelt before the Cross. There are children who swear he had a special glimmer in his eye as he asked it, so they knew this was the time to pray most fervently. Just a short while later, my phone rang with news that a liver had been granted to Mariana. I wonder what was happening while my beloved friends knelt before the Lord? Were the donor’s parents making the final choice of whether to donate their baby’s organs? Was the UNOS board making its selection, determining which sick child would be saved? I cannot help but think that the Lord inspired our priest and

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allowed that phone call to come just after those prayers because He wished to send us a message: Your prayers matter. I hear your prayers, and I love you. Holy Lord, have mercy on us, and have mercy on my sweet child. • • •

Pre-op Photo M O N D AY, S E P T E M B E R 1 3 , 2 0 1 0

Marko took this just before they wheeled Mariana into surgery. [In the color picture she looks extremely yellow.] I am hopeful that in the next few days she will look much less yellow! Mariana is in surgery now. We did receive confirmation that her central line was put in at 8:00 and that the liver transplant itself began

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(first incision) at 8:45. That means they’re on schedule and that as of 8:45, everything was going well.

After the surgery, she’ll be in the Pediatric Intensive Care Unit (PICU) for a few days. We will not be able to receive visitors until she leaves for the twelfth floor again. The transplant coordinator is telling me to brace myself for an infection and a three-week stay. I think she knows it’s best to brace ourselves for the worst, so that we’ll be happy with whatever we get. That’s good advice. I wish I could unlearn the fact that two weeks ago, two babies came in for transplants on Monday and Tuesday and were home by Sunday. She did mention they weren’t quite as sick as our Mariana—her liver condition is a lot nastier than most. That’s why she only waited two weeks on the list—it usually takes much longer. I should call it “the liver condition she used to have.” By now I think they’ve removed that old defective liver and sent it off to the research labs. I am braced for the worst, but I am hoping for the best. This morning, Mariana’s liver failure is finished. She was dying of liver failure, and now she is not. Glory be to God in the highest! Lord, have mercy on us. • • •

Surgery Is Finished • M O N D AY, S E P T E M B E R 1 3 , 2 0 1 0

The surgeon came out and let us know that the surgery went well. Her liver didn’t look like they expected—she did not have a gall bladder or

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bile duct. So now her diagnosis is in question, but we’ll wait and see what the pathology crowd says about the liver. Either way, transplant is the preferred cure, so we thank God that she has a new liver! She’ll be moved to the PICU soon, where we expect her to be connected to many tubes and wires. Our older girls have undergone surgeries before, and invariably, those days were approached with trepidation and concern. Our friends, knowing what we were facing, would offer us their sympathy whenever we were heading in for surgery with one of the girls. This transplant, however, was different: it was preceded by constant congratulations and rejoicing. Throughout the halls of this huge hospital, nurses and medical students and doctors burst into smiles and expressed their delight that Mariana’s turn had come. Emails and phone calls poured in from home, everyone full of energetic rejoicing. I have to admit, it’s surreal. This is not how people usually greet us when our child is going under the knife. Everyone is so grateful that she is finally able to have this surgery, that her liver arrived before she ran out of time. Thanks be to God. We should always be this grateful, this aware that we are lucky to receive medical interventions, that our place in history and in geography blesses us enough to find a reprieve from a death sentence. Not everyone is lucky like this; we should appreciate it. • • •

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The New Normal: PICU •

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M O N D AY, S E P T E M B E R 1 3 , 2 0 1 0

Mariana is in the Pediatric Intensive Care Unit. There are no visitors allowed (save me and Marko), no cell phones, no beds. In order to get in, we sign in and don our special badges, then go through the special scrub room where we scrub up to our elbows. The nurses and doctors are everywhere, all of them very competent and focused and excruciatingly detail-oriented. This is the perfect place for a baby still coming out of anesthesia. The surgery went well, and we’re all very happy that Mariana has a new liver. That said, she is a very sick little girl who just had her internal organs removed and replaced. She has a huge gash all the way across her abdomen, and she still has a machine breathing for her and a central line and her PICC line and a regular IV line and an NG tube. . . . She hasn’t woken up yet, but that’s normal. Marko and I have snuck out to grab a quick nap before she wakes up. We may not be easy to reach for a few days now—no cell phones, no visitors. We are going to be in the PICU for at least a few days. We’re not waiting for a liver anymore, but we’re still waiting—for a good recovery. We’ll be able to breathe better when we see that little baby’s smile again. • • •

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22 Hours Post-Surgery • T U E S D AY, S E P T E M B E R 1 4 , 2 0 1 0

Mariana is still sleeping, still on a breathing tube. She is puffy and swollen, and looks about like a kid who had her belly opened up just yesterday morning. Her heartbeat implies that she is in some pain, so they’re giving her tiny doses of morphine. Her doctors say that this is what day two should look like. She is not amazing them with her awesome recovery, as I’m sure some babies do, but she is also not worrying them with dire signs. She’s okay. We have one very bright piece of news that is making us feel very good this morning: her combined bilirubin number is 5. Five! I should clarify: on the day we first tested her bilirubin back in late July, it was 9.9, and it climbed steadily, peaking at 38.8. We are accustomed to numbers in the thirties, so when the nurse expressed concern over “high” bilirubin, we braced ourselves—and then she said five! Glory be to God in the highest, this liver works! It will be a while perhaps before she is awake and smiling again, and there will be a few scares along the path, I’m sure. But this liver works, and God provides. Today is a Good Day. If this is our personal Pascha, then today must be Holy Saturday— the quiet day between Friday’s wounding and crucifixion and Sunday’s glorious resurrection. This is the part where it seemed that Christ lay peacefully in a tomb, but underneath all that stillness, a great change

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was being wrought, as He was gathering His beloved below to bring them to Life. Mariana appears quiet and sleeping, but within her that

liver, marked for death just hours ago, is coming to life and marshaling all of Mariana’s forces, gathering them for the coming Pascha. As usual, our job is to wait patiently. Isn’t the internet wonderful! I found these online, the hymns of Holy Saturday: Come, let us see our Life lying in the tomb, that He may give life to those that in their tombs lie dead. Come, let us look today on the Son of Judah as He sleeps, and with the prophet let us cry aloud to Him: Thou hast lain down, Thou hast slept as a lion; who shall awaken Thee, O King? But of Thine own free will do Thou rise up, who willingly dost give Thyself for us. O Lord, glory to Thee. Today a tomb holds Him who holds the creation in the hollow of His hand; a stone covers Him who covered the heavens with glory. Life sleeps and hell trembles, and Adam is set free from his bonds. Glory to Thy dispensation, whereby Thou hast accomplished all things, granting us an eternal Sabbath, Thy most holy Resurrection from the dead. Life sleeps and hell trembles. What amazing things we are witnessing, among the beeps and bustle of the PICU. We’ll let you know when our Pascha dawns. Glory be to God in the highest! • • •

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What a Difference a Day Makes! (Or “Wait until you see the whites of her eyes!”) • T U E S D AY, S E P T E M B E R 1 4 , 2 0 1 0

Now here’s the big reveal. The moment we’ve hoped for has arrived— our little yellow girl has received her liver transplant and is now dramatically less yellow!

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That is our beautiful daughter looking less and less like a liver patient. Glory be to God! Shout aloud to the Lord, all the earth; Serve the Lord with gladness; Come before Him with great joy. Know this: the Lord, He is God; He made us, and not we ourselves; We are His people and the sheep of His pasture. Enter into His gates with thanksgiving And into His courts with hymns; Give thanks to Him; praise His name; For the Lord is good; His mercy is everlasting, And His truth is from generation to generation. (Psalm 99) • • •

Slow and Steady . . . • W E D N E S D AY, S E P T E M B E R 1 5 , 2 0 1 0

Mariana is even less yellow this morning, and all of her liver enzyme tests look good. The new liver is functioning well, thank God! She’s still on a breathing tube, so we’ll be here in the PICU for a while. Because the anatomy of her original liver was unusual (the ducts and arteries and the like were either missing or in the wrong places), hooking up the new liver (with all of those things in the right places) took some ingenuity. Certain critical connections, in particular the hepatic artery, required some extra stretching and grafting. In order to Sample pages only. Purchase the full book at http://store.ancientfaith.com/in-gods-hands/

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give that some extra time to heal up, the doctors have pumped a lot of fluids into our little one and are allowing her to be “fluid positive” for longer than normal. She gained 2.5 lbs. in water weight yesterday. She is very, very puffy. The big problem with being so very fluid positive is that it makes the lungs “wet.” Her soggy little lungs are fighting an abdomen full of fluid, so breathing is hard work—so the breathing tube and the machine that breathes for her are critical. The big news this morning is that her liver team is now comfortable with reducing her fluid levels. They’ll begin dosing her with diuretics soon, so over the next day or two her fluid levels will decrease. God willing, this will mean that her breathing becomes easier, and soon enough she will begin to breathe on her own. When her own breathing is strong, they’ll remove the breathing tube. (She hates the tube, so until it’s gone she’ll be somewhat sedated. When they remove the tube, perhaps we’ll begin to see some normal baby action. Until then, she’s either asleep or angry.) Twenty-four hours after they remove the tube, we will become eligible to leave the PICU and head back upstairs. There aren’t any signs of any other problems brewing, so perhaps once this breathing tube issue is gone, her progress will be quicker. We will just have to wait and see what God has in store for us. It does feel good to be on this side of transplant. One of the doctors (the “liver fellow”) pointed out that time used to be our enemy, but now it’s our friend. He meant that before transplant, we were concerned about whether she could last until a liver became available and whether we could fatten her up quickly enough—would there be enough time? The big questions today are all about timing too, but there is an assumption that she will be healthier as more time passes. Now

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we ask, how long will we keep this tube, how long will we be downstairs, how long until we go home? These are much better questions.

We’ll be here in the PICU for a while—certainly longer than your average liver transplant patient—but this is the right place for this girl right now, and we have nothing but time on our hands. We have plenty of time, thank God! We can sit right here and wait. Time is in no particular danger of running out, and we have been learning patience, and we can do this. Glory be to God! • • •

Still Holy Saturday • T H U R S D AY, S E P T E M B E R 1 6 , 2 0 1 0

Not much has changed for Mariana. She is still on the ventilator, still puffy. Her new liver is still functioning well. Most of the changes are slight—she’s on a slightly higher dose of painkillers and sedatives, she’s slightly less puffy, she’s slightly less yellow. I think both she and I are significantly more tired of all this today. Whenever she awakens, she writhes and fights and blocks the ventilator from working. It’s terrible and dramatic to watch, but I’ll spare you the details. Let it suffice to say that this baby is sick and tired of the ventilator, and she isn’t shy about making her aggravations known. So today is a good day for resting up and for practicing patience. On my personal Pascha calendar, we remain in the stillness of Holy Saturday, not yet past the wounding of Friday and not yet glorying in the Resurrection. We have become experts at waiting—although today

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might have challenged us a bit extra. Perhaps, God willing, there will be just a few more days like this. We’ll see. • • •

Giving Thanks • T H U R S D AY, S E P T E M B E R 1 6 , 2 0 1 0

I opened up my book of Psalms tonight, and Psalm 9 was there, waiting for me: I will give thanks to You, O Lord, with my whole heart; I will tell of all Your wondrous things; I will be glad and rejoice in You; I will sing praise to Your Name, O Most High. (Psalm 9:2–3) We’re tired today, and waiting for the second half of the miracle that is Mariana’s liver transplant. This is a good reminder—I don’t want to forget to be grateful that we have come this far, that God has provided for us and continues to provide. On a day like today, it is very easy to get caught up in the problems of the day and to forget that we have come so far. But that’s always the way it is. God provides and provides, and we are grateful in that moment—and then the next day dawns, and yesterday’s blessings are forgotten. I pray that we are able to hold that gratitude and amazement in our hearts, on bad days and good days. It is an effort to be grateful—not only for this big miracle, but for the little

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ones too. We can scarcely count the blessings we receive every day, and I pray that we’ll remember to thank God for at least some of them. • • •

Body Slam • F R I D AY, S E P T E M B E R 1 7 , 2 0 1 0

Today we are absorbing the news that it may take up to a month for Mariana to clear out these fluids and come off the ventilator. We were aware that sometimes the PICU stay is long and drawn out. We were repeatedly cautioned that this could take a while. Even so, somehow I was pretty sure that our Mariana was in good enough shape to require only a few days in the PICU. Now it is becoming clear that we will be here at least a few more weeks. Everyone seems to agree that there will come a day when she can breathe on her own, and all of these tubes and wires will fall away to reveal a waking, smiling child. They also agree that today is not that day, and that it’s not coming any time soon. All in God’s time, which is slower than my time. “My ways are not your ways, and My thoughts are not your thoughts.” He told Isaiah that so long ago, but it’s still hard to accept sometimes. Along this journey I have lived through a few days like today when bad news slams into me, knocking the wind out of me. I remember a day back in Austin when I couldn’t put words together—literally could not speak sentences—because I was slammed with the realization that Mariana’s life was in terrible danger. I remember the morning when I

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awakened to a doctor standing over my bed, declaring that her liver had already failed, that no experimental treatment would spare us a liver transplant. On each of these occasions, even as the bad news sank into my heart, I knew that I had been told this a few times before but had somehow managed to avoid knowing it until just now. So today is the day we are finally absorbing the latest blow—the wait for Mariana’s belly to shrink down is going to be much, much longer than we had hoped. It will be measured in long, quiet weeks rather than days. I had been waiting to post photos until I had some happy, smiling images for you. As it turns out, those will take a while. Our Pascha is delayed. So here are some photos of Mariana today—not one of which has been digitally altered. Mariana’s belly is so full of liquid that her belly button has popped out (like a pregnant lady’s), and her skin is stretched so taut that it shines. Look!

I promise you, we are not polishing that belly up or waxing it or anything. That’s just its own amazing shininess. My poor girl looks like she’s about ready to explode. I pray that the diuretics they’re pumping into her work quickly. That can’t be comfortable. Copyright © 2013 by Elissa D. Bjeletich. All Rights Reserved. Published by Ancient Faith Publishing.

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We’d all like to see a smiling photo of the newly pink Mariana, but she sleeps all the time. They keep her sedated, because when she wakes up she is outraged at the ventilator and all the other tubes and lines. It is difficult to watch her so desperate and angry, so we are grateful for

the sedation. She will remain sedated until they are able to remove the ventilator—that is, probably for the next few weeks. This is Mariana in her bed in the PICU:

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In G od’s Ha n ds You may notice a bow in her hair. Last night, Mariana’s very sweet

nurse actually made that for her out of sterile gauze. They’re very aware that this sleeping patient of theirs is a real person, a sweet little girl who is not usually covered with medical apparatus. We have met so many good people here, and I am continually amazed at how emotionally invested they are in their patients. What a difficult road that must be, as it doesn’t always finish with a healthy, happy ending. I pray that they are rewarded for their love and service.

This is Mariana at rest. She is so pink and sweet here. This photo makes me feel so grateful for the liver that is working away inside of her. This donor and the family that authorized this donation have literally saved her life. The liver that Dr. Goss pulled out of her body was hard and green and awful, and she could never have survived without a new one. Copyright © 2013 by Elissa D. Bjeletich. All Rights Reserved. Published by Ancient Faith Publishing.

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I have to remind myself that the troubles we have today, the stakes

we face here in the PICU, are nothing like what we faced last week. We are simply waiting for her to awaken. I need to move back into my patient waiting mode, and quick. “Be still before the Lord, and wait patiently for Him.” I am going to have to repeat that to myself all afternoon to retrain myself. • • •

A Prayer for the Donor & Family • F R I D AY, S E P T E M B E R 1 7 , 2 0 1 0

Lord of my salvation, You are a merciful and loving God, who has invited this little child into your Kingdom. Be good to this child, who is sinless and beautiful and ready to partake in Your heavenly Glory. I believe, O Lord, that You have prepared a special place for all Your little ones whom You invite to join You soon after their birth, for You Yourself have said, “Let the little children come to Me, for such is the Kingdom of heaven.” In that place of peace, O loving God, establish this soul. Help this family, who have generously shared life through the donation of organs, to accept their loss and to carry their burden, which is heavy. Walk with them, O Lord, for You are the source of strength and comfort, and unto You are due all glory, honor, and worship, with the Father and the Holy Spirit, now and ever, and unto the ages of ages. Amen. • • •

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