Lukas' Story: December 16-26, 2002  |  Lukas' Fund Home Page

November 15 - November 30, 2002
December 1 - 15, 2002
December 16 - 26, 2002

12/16/2

When we arrived this morning, we ran into the resident Dr. Schaeffer in the hall. She said that Lukas had had a rough night. We had noticed yesterday that he was less interactive, especially in the afternoon. Antibiotics had been stopped about 24 hours before, and it looks like that lassitude was the beginning of sepsis (severe infection and the body's response to it). His little tummy was very red, and the stoma site was breaking down, with skin separating from the bowel mucosa where it joined the skin. The ostomy nurse spent quite a bit of time dressing the wound, and he is now on three antibiotics again (vancomycin, amikacin, and clindamycin).

The new surgeon, Dr. Parker (they change weekly) felt that the protein loss and other problems could primarily be caused by the liver, and that as his liver improves, these other problems and the wound healing will as well. Lukas' stoma output has decreased, which is encouraging, so he isn't losing as much protein, and his bilirubin is down to 3.7 total, 1.3 direct (best ever). His tummy even looks a little better in terms of its size. However, he is requiring higher ventilator settings (33% oxygen, rate of 60, up from 40). Lukas is acidotic from the sepsis, and the body gets rid of extra acid by turning it into carbon dioxide and breathing it out.

His little face and hands and arms are puffier. In a way, this makes him look more "normal", like a chubby cheeked little baby. Kids with IUGR typically have little baby fat, and look like wizened old men. The edema has filled him out, and we can get a better idea of what our son will look like when he gets older and fills out. We both agree he will be incredibly handsome! We had a really nice 30 minutes, with him holding our fingers and smiling and eyeing us. Yes, smiling, if you can believe that. What an incredibly brave little guy.

Lesson #3: Is is what it is, and we'll ride over it. Laura and I were riding our bikes on Vancouver Island, and staying at the wonderful Yellowpoint Lodge. The primary exercise at the lodge was walking from our adirondack chair on the water to and from meals. While sitting there, looking across the water toward Saltspring Island, I mentally traced our next day's route. Looking at the map, and the island, I saw that we had a huge hill to climb. I began to worry that we wouldn't make it to Victoria, our destination the next day, because it was about 90 miles, and with hills like that, well, it would be a long day. However, worrying about it wasn't going to make the hill any smaller, and we were good riders with good equipment who had ridden further in a day and ridden up higher hills. After a while, we both agreed: it is what it is, and we'll ride over it. That has become a mantra for us whenever faced with a tough situation, and we have said it from the first day. We think Lukas will be a great biker some day, and have long dreamed of taking him with us when we are touring in Germany or the Netherlands or northern Michigan. We think he knows that he's strong, he has great medical care, and parents that love him: it is what it is, and he'll ride over it.

12/17/2
Lukas had a somewhat better day today. His white blood count and platelets were up a bit (this is good - they had been low, which happens with sepsis in preemies), his belly and scrotum are no bigger (maybe even a bit smaller), and ventilator settings are improved. They were able to reduce the tidal volume, which is the amount of air going into his lungs, from 5 ml to 4.5 ml, and the rate from 60 to 55. Best of all, he just plain looked better. Better color, and some good interactions when the morphine was wearing off and he woke up. It was otherwise a quiet day, with no further testing, and we hope that Lukas took advantage of the rest to get stronger, and continue to fight the infection.

Lukas got a new tube that goes from the ventilator into his lungs. It is a bit larger - the old one was too small, and some of the air being pumped in was leaking out. Take a soda straw, purse your lips around it, pinch your nose, and try to breathe through it. That's what Lukas is doing, so he appreciates the bigger tube.

Here is a photo of our new office - note the attractive view of the hospital parking lot, the expansive workspace, comfortable seating, and excellent lighting. It actually isn't bad, and we both get a fair bit of work done between chances to look at Lukas. Note the laptop on the little 1 x 3 foot table, and colored folders with Laura's student's papers. The incubator is usually completely covered to give him a dark, quiet environment in which to rest.
Lesson 4: Keep your mouth shut. When biking in the countryside, you often ride alongside ponds, ditches, streams, and rivers. These are great breeding places for bugs, and those bugs have a way of finding their way into your mouth when you ride. Considering that my mouth isn't that big (maybe 1-2 square inches in casual openness) it's amazing that you can get 20 or 30 bugs a minute in there during a bad stretch! Therefore, on stretches like that, on days when the air is buggy, we learned to keep our mouths shut. As a physician with a critically ill child, I've also had to learn to keep my mouth shut, with varying degrees of success. While Laura says I'm doing really well, I suspect that she's being kind. Most days there are at least a few times where I make "helpful suggestions" to the nurses and physicians. The attending on call over the weekend sat me down and gave me some "friendly advice" to not talk to anyone except the attending, and then only once a day. He had asked if I had any questions during rounds, and when I actually did, and also made some suggestions, I think he was a bit taken aback. While his advice was well intentioned, and may have worked for him when he had an ill child, I don't have such an easy time turning my brain or mouth (which are closely connected...sometimes too closely) off. So, I will continue to make the occasional suggestion, will try to limit most of my interactions to a chat with the attending, and will make sure that I am respectful and thankful for the terrific care that Lukas is getting from his healthcare team.
12/18/2

Another relatively stable day. Lukas had a bigger belly this morning, but his color was good, and surgical sites and stoma looked good to the surgeon. He was wondering out loud if maybe all of the fluid leaking into the ostomy bag was perhaps leaking from the belly around the stoma, rather than coming from the gut out of the stoma. They will be doing an ultrasound to look at the liver - perhaps some venous obstruction in the liver is causing the fluid collection in the peritoneum. We'll see the results tomorrow. Lukas' labs and ventilator settings were stable today, and we had a really nice interaction in the evening. He seems most comfortable and interactive in the early evening, when things quiet down in the NICU. His facial expressions make it very clear when he is in pain - play with an IV or poke him, and you get a big frown and wrinkled brow. When Laura and I talk to him quietly, he looks around, and crinkles a little smile for us.

I had a meeting today with a colleague from out of town who had a similar experience with some very premature twins. It was good to think about something else for a while, and he had good advice for us as an experienced "NICU parent". His big message was to be good to ourselves while we do our best to be attentive to Lukas.

Lesson 5: Pack light. On all of our bike tours, we have been totally self-contained. No sag-wagons to carry our gear, no previously determined routes, no other cyclists. Just me, Laura, two bikes, panniers, and a bunch of maps. We spent 6 weeks in Europe back in 1995 living this way - truly a transformative experience. Of course, other things found their way into our pack: trashy novels (Mark), really erudite intellectural novels (Laura), and the occasional bottle of single malt scotch for emergencies. Since this gear has to be carried up every hill, crag, and mountain on our tour, sometimes covering up to 100 miles in a day, every ounce counts. That means polypropylene underwear, no blue jeans, and only 4 or 5 shirts, 2 pairs of shorts, and 1 set of long pants for 42 days. Our stay in the NICU has shown us that while we love our life in Athens, it is amazing how much of it we could quickly leave behind for the past month. One suitcase full of clothes, one bag of books, and a computer each for the past month, spread out over about 120 square feet of hotel room. A 1 x 3 foot desk for Mark, and none for Laura. Yet, it has been more than sufficient, and we have quickly adapted to this new rhythm. Nevertheless, we look forward to returning to our normal life someday. This weekend we plan to begin "commuting", living in Athens, with one (or sometimes both) of us driving in each day.

Some people have asked if they can share this site's address with friends. We certainly have no objections - we know that putting information on the Web means anyone in the world could potentially see it . That's OK. Laura is keeping a separate journal with more personal thoughts about our stay in the hospital with Lukas.
12/19/2

Lukas had a restful night, with no changes in fluid output or ventilator requirements. His color looked good to us, as he rested on his tummy again. Lukas likes that position for breathing, and they had avoided it for a few days after he had some blood in his stoma, but are trying it again. The liver ultrasound is scheduled for later today - they do that at the bedside. Remember from yesterday that there was some question of where the fluid in his ostomy bag is coming from - is it coming from the stoma (i.e. intestines) or is it leaking around the stoma, where it is stitched to the skin, and actually coming from the ascites in which the intestines are swimming? To resolve that question, Dr. Gauthier will have the nurses put some food color into the feeding tube that rests in his stomach. If the dye shows up in the ostomy bag, then we can assume that the fluid comes from the small bowel rather than the ascites. If not, it probably comes from the ascites and is leaking around the stoma. Lukas also got a new arterial line in the posterial tibial artery on his left foot. The posterial tibial is a small artery just behind the "bump" on the inside of your ankle.

Lesson 6: Keep lines of communication open. When riding, Laura and I always ride single file. We are usually quite close, often within 5 feet, so we can draft. Just like Nascar, cyclists draft to reduce the work for the person(s) riding in the shadow of the lead cyclist. Because we ride so close, we have a series of signals designed to help keep us safe. They include: We're not kidding about the last one - it actually happened several times while biking on a narrow lane in the Dingle Peninsula in Ireland, with a maniacal German tour bus driver bearing down on us. I swear we saw him laugh as we dove into the bushes. Keeping lines of communication open has been important for us during the past 5 weeks. In particular, talking about the things we want to do with Lukas when he comes home (like a bike tour!) helps keep us optimistic about his future. We also make sure we communicate with each of his nurses by being there for part of every nursing shift, and try to spend a few minutes talking to the neonatologist and surgeon at least once a day.

12/20/2

Dr. Gauthier was home sick today; it would have been her last day on the service. Dr. Piazza took over this morning, and will be caring for Lukas during the next 8 days. He took at least 30 minutes at Lukas' bedside to hear the resident's report, examine Lukas, and ask questions, and another hour or two wading through our son's thick chart. (As an aside, doctors will tell you that you never want to be a patient with a thick chart, but our little guy didn't have much choice in the matter.) Dr. Romero, the pediatric liver specialist, also spent at least 2 hours reviewing Lukas' chart and medical history, and also explained his findings to us in considerable detail. We really appreciate the obvious care that both physicians took in getting up to speed with a very complicated little boy, and in spending time answering all of our questions.

Basically, we still cannot be sure what has happened to Lukas. Two key things are going on now: his liver does not appear to be functioning normally, causing fluid in the belly (ascites) and he keeps "using up" his platelets (thrombocytopenia). A viral infection is still a fairly strong possibility, since it can cause both decreased platelets and liver problems. Another possibility is that Lukas has a lysosomal storage disease - examples include Gaucher's disease and infantile sialidosis. Tests are being sent to Philadelphia, where they have the nation's premier children's hospital (CHOP - Children's Hospital of Philadelphia), but they will take two weeks. We hope it isn't one of these conditions, because they are not treatable. The liver looked normal on the ultrasound yesterday, and there was no evidence of blood clot in the liver, but that doesn't help us distinguish between these possibilities. A number of further tests to evaluate his liver function, such as its ability to get rid of ammonia and its ability to make blood clotting factors, are pending.

Below are two of Lukas' nighttime companions - Kelly (left) and Letitia (right). They provide wonderful care for our son when we can't be there, and help us sleep comfortably knowing that he is in good hands. You can see from the photo that Lukas is getting bigger - compare his head with the photos taken while Laura holds him on the first couple days of his life.




Lesson 7: There will be good days and bad days. Some days on a bike tour couldn't be better. The sun is shining, the scenery is beautiful, your legs and lungs feel strong, and at the end of the day you feel like you've accomplished something. It even feels like the entire route runs downhill. Or, to paraphrase the Irish, the road rises to meet your wheels. Other days, it is raining and windy, the route is an endless series of hills, and your butt hurts. Then, you get a flat tire. And a second flat tire. And even (yes, this has happened to me) a third. The only thing that keeps you going is the knowledge that there are more good days than bad, and that if you weren't out there slogging through a bad day, you'd never have the opportunity to experience a good one. As you can tell if you have been reading this journal, the NICU is full of both good days and bad days. Today was harder than most - the news about Lukas' possible lysosomal storage disease was hard to hear. We don't know how likely it is, but have to realize that it is a possibility. We hope that this bad day will be followed by many good ones, and that eventually this time will be but a distant memory.

12/21/2

Just a quick update today. Laura and I drove in from Athens this morning, spent a few hours with Lukas, did some Christmas shopping, and then spent another couple of hours at the end of the day. It is good to sleep in our own bed, see our dogs, and enjoy the company of Laura's parents. Lukas had a quiet day. His vent tube had slipped out a bit, probably because he has been pulling on it a bit. Preemies often keep their hands near their face when they are comfortable, and it is clear from pushing on his tummy that he isn't experiencing much discomfort, which is reassuring. They pushed the tube back in, checked some x-rays, and his oxygen saturation improved considerably. We also had some good news - his ammonia is 114. While this would be high for an adult, it is typical for a preemie, and suggests that at least his liver damage at this point isn't severe or necessarily permanent. A very high ammonia would have been a very ominous finding. We are still waiting for some clotting factor studies, which should be back tomorrow, to give us an idea of how is current liver function is. These factors (5, 7 and 8) break down quickly, so if the level is OK, it means his liver is making them now. Nevertheless, Lukas remains quite ill, though, and it is hard to predict when and if his liver will recover its full function.

12/22/2
Lukas was a good boy last night, and didn't give his nurse Kelly (12/20 photo) any trouble. The big news is that he is now getting a tiny bit of Laura's breast milk through a thin feeding tube placed into his stomach. They are giving 0.6 ml/hour; over 8 hours, that will give him about a teaspoon. While a very small amount, if he tolerates it, they will gradually increase the amount. This is a reflection of his gut (intestines) beginning to work more normally after the surgery. Unfortunately, it does not mean that his liver is any healthier. However, getting nutrition through the gut instead of through an IV (hyperalimentation) is good for the liver, so we hope that this will eventually help his liver as well.

Otherwise, Lukas' heart, lungs, and other systems appear stable. It is hard for his lungs and breathing to improve much given the size of his belly. It is pushing on his diaphragm, so it is as if he were breathing with a big fat guy sitting on his tummy. It increases the work needed, and makes it harder to expand his lungs to an adequate volume. Obviously, if the liver problem resolves, the fluid goes away, and his breathing should improve relatively quickly.

Our friends Allison and Gene were here when I arrived this morning. Lukas gave Allison a finger hug, and his eyes were dancing as he looked up at them. It was very nice of them to take the time to stop by and visit during this busy time. I had a nice visit with Lukas as well, placing my hands on his back and head. He even survived a very scary thing - nursery rhymes. Sung by me. In (gasp!) German. I could only remember one, my favorite, and will have to ask my parents to sing me a few more so I can remember them and pass them on to Lukas. The one I remember is (apologies for misquoting and misspelling to my parents, who taught me German before I learned English):
Fuchs du hast die Gans gestohlen,
    Gib sie wieder herr!
    Gib sie wieder herr!
Sonst werd dich der Jaeger finden mit dem Schiessgewehr,
Sonst werd dich der  Jaeger finden mit dem Schiessgewehr.

(Fox, you stole the goose
    Give it back!
    Give it back!
Otherwise the hunter will find you with his gun
Otherwise the hunter will find you with his gun)
OK, not exactly a politically correct nursery rhyme. Trust me, it sounds much cuter in German! Laura will no doubt find some good vegetarian rhymes for me to sing.

At right is another picture of Lukas, taken today. You can see how his tummy is large in comparison with the rest of his body, because of the ascites. However, his color is good, and he is "filling out" a bit. The yellow tube is the feeding tube that goes into his nose and down into his stomach. The picture is a bit blurry so we can show you Lukas' eyes. It is amazing to me how much emotion and feeling and love can be conveyed by his eyes, even though they are only about a square centimeter in surface area. He dances with his eyes, and we dance with him.

12/23/2

Laura and her father Ken visited Lukas in Atlanta today. His ammonia level, a measure of liver function was down today, which is encouraging. However, the lack of protein (albumin 2.8 today, protein 3.4) and blood clotting problems (his clotting factors are decreased) suggest that he definitely has some liver failure. It is not severe, and we hope that he recovers the function. The great thing about the liver is that it has a terrific capacity for recovery, much better than most organs. Lukas' left lung was somewhat collapsed today, and he is requiring increased support on the ventilator. Hopefully they can get it inflated with increased pressures and changes in position, so he can come back down on his settings. A number of other medications were started today to help him, including steroids for his lungs. He received more platelets and red blood cells today. Our son has had probably 20 or more transfusions during his short life, and has almost certainly had the equivalent of his entire blood volume replaced a couple of times. Most people never have even one transfusion during their lives. There is no sign of infection, and a whole slew of tests for rare, awful conditions were sent out today.

Dr. Piazza spent a lot of time coordinating Lukas' care today, working with the pediatric hematologist (newly consulted), pediatric hepatologist, laboratory, nurses, ostomy nurse, and pediatric surgeons. Lukas was a busy boy today, and seemed to be tired and a bit out of it. Hopefully he'll have a better and quieter day tomorrow. Perhaps the best news is that he tolerated his feeding with breast milk well today, and they will hopefully be able to tweak the rate up a bit tomorrow.

My parents Herbert and Hildegard drove up from Florida for the Holidays, and will be staying here till Thursday. It's great to see them, and we had a wonderful dinner with both sets of parents at DePalma's, our favorite Italian restaurant in downtown Athens. It was the first place Laura and I ever went to dinner in Athens and remains our favorite.

12/25/2

Sorry for the lack of an entry yesterday - the MSU server was acting up a bit, and I needed a day off anyway. My parents joined me in visiting Lukas on Christmas Eve, which was nice. He even squeezed my mother's finger, a memory I'm sure she'll carry back with her to Florida. Today, Laura and I visited Lukas and spent the afternoon with him. We had some nice interactions, as you can see below. He had another visitor this morning - Santa stopped by! We'll scan the picture in at Laura's office when we get a chance, it is just too cute.

You can see from Lukas' picture that Santa left behind a little replica to keep him company. You can also see that Lukas looks puffier - he now has a truly Churchillian double-chin. His belly looks a bit smaller to us, though, although it is hard to be certain. His blood protein levels are creeping upwards a bit, which is good. His albumin is now 3.7, up from 2.8 the last time it was measured. His urine output is also good, at 4.7 ml/kg/hr, which is quite a bit. We hope that the albumin is drawing excess fluid into the bloodstream, and then the Lasix (a diuretic) is helping him excrete it. His ventilator settings have been fairly stable for the past 24 hours. We had some scary moments yesterday when he was requiring 100% oxygen and still not getting enough, particularly when he got excited. While he could go back on the oscillator if he had to, we'd obviously like to avoid it.

We both agree that we are an odd place mentally. Laura and I have spent our entire lives planning ahead, making lists, and being very goal oriented. Probably to a fault - it is almost impossible for either of us to just sit around and do nothing. That is why golf has been such a wonderful release for me - it is a chance to be outside, with friends, doing something I enjoy, with no possibility to work. With Lukas, we are forced into a day by day existence. Part of that is that his condition fluctuates so much from moment-to-moment, but part is that we don't want to allow ourselves to look too far ahead. We don't want to dwell on the worst, but we also don't feel like we can allow ourselves to get our hopes up too high, lest we crash down at some time in the future.  Thus, day to day is best for now.

Special thanks to his nurses (Monica, Kathryn, Jody, and Kelly), respiratory therapist (Lester), and physicians (Drs Mohommed, Dr. Piazza, and Dr. Sexton) who took care of Lukas on a day when I'm sure they would all have rather been with their families. We appreciate your sacrifice very much.

One of the presents we got is a tape recorder and tapes for Lukas' bed. We hope to record our voices, talking to him, reading books, and even (here's the scary part) singing. Hopefully Lukas will be well enough in the next week or two that we can begin to do that for him.
12/26/2

Lukas Willem Bierema Ebell, our son, our love, our prince, died today as we held him in our arms. The phone call we were dreading came at 5:30 in the morning from the neonatologist on call, Dr. Sexton. He said that Lukas was having more trouble breathing, with his belly increasing in size, his carbon dioxide level going above 100, and increasing difficulty maintaining an adequate level of oxygen in the blood. To take the pressure of his lungs and help Lukas breathe better, the neonatologists decided to place an IV catheter in his belly to draw some of the fluid off. Toward the end of the "tap", a small amount of blood was seen. Later in the evening, it was clear that he had been bleeding into his abdomen. Lukas was very pale, and his lower abdomen and scrotum were a bluish color from the blood. That is when we were called. By the time we arrived about 90 minutes later, the nurses and doctors were doing their best to keep Lukas alive. His blood pressure when we arrived was only 15/10. Normal for an adult is 120/80, and normal for him as been about 54/26. This very low blood pressure for two hours or more almost certainly damaged his brain. Unfortunately, there was nothing they could do to increase the blood pressure because he was bleeding so quickly. They tried to withdraw fluid again from his belly, but this time got only blood. Lukas' liver disease was so bad that his blood did not clot normally. He has received many transfusions of platelets, red blood cells, and fresh frozen plasma, and had several of each today, but to no avail. He would not stop bleeding. Despite this, our little Lukas looked around at us with his beautiful, blue eyes. He never looked more beautiful to us.
We had two heartfelt conversations with the health care team, who helped us understand that Lukas' situation was becoming more futile, and that the options for treatment were very limited. Then the two of us talked. Our goal for Lukas was always that he be able to come home with us and be able to interact with us and others in a meaningful way. Appreciate a sunset, smile at a puppy, and laugh at a joke. Because of the high likelihood of brain damage caused by his underlying illness, the near certainty of brain damage from the bleeding and low blood pressure today, and the very low likelihood of recovery in any way from his illness, we decided to withdraw care. The nurses turned off his IV fluids, disconnected as many lines and leads as possible, and dressed Lukas in a beautiful blue gown, cap, and booties. They gave him some morphine to calm him, and keep him from becoming short of breath. We both cradled Lukas in our arms, and while he still had his eyes open, by this time he seemed to be staring off into the distance. When we said we were ready, the nurse gave him some Versed, a medicine to calm him, and the doctor removed his ventilator tube. Lukas' strong heart gradually slowed, and his breathing stopped. He passed from us at 11:40 am.

Lukas has touched many lives, none more so than our own. We believe that Lukas taught every one of us important lessons. We believe that Lukas loved us, and that we loved him. We believe that he felt pain, but is no longer suffering. We believe he knew us and loved us as we loved him. We believe that we will carry his fierce desire to live with us till the day we die. We believe that every life is sacred and meaningful, no matter how short. We believe that our beautiful little boy is finally at peace.

If you would like to honor Lukas' memory, we have established a non-profit organization called "Lukas' Fund". To make a contribution, please go to the "How to Give" page on this site.

We plan to work with the nurses, therapists, and doctors who took care of Lukas to identify the needs of the neonatal intensive care units at Grady Hospital in Atlanta. They will tell us how to spend the money. Our focus will be on touch, not tech. Possible purchases include special gel pillows for baby's heads, preemie diapers, educational materials to help parents interact with their premature child, bedding materials to assist in positioning, and books or videotapes on parenting for the waiting room. Grady Hospital had none of these things for the preemies, and we know that Lukas would want to do anything he could to help his "roommates".

Thanks to all of the nurses, respiratory therapists, physical therapists, physicians and others who helped care for Lukas during the past  6 weeks: Kelly, Kathryn, Kathleen, Leticia, Jill, Melinda, Monica, Connie, Peter, Lester, Janice, Danali, Marie, Ted, and Drs. Faase, Goggin, Biddle, Dudell, Gauthier, Schaeffer, Sola, Sexton, Piazza, Romero, Pettit, Bullock, Mohammed, and Parker, and all of the others whose names we may have forgotten but whose love and care attention we have not.

12/30/2

We would like to thank all of you who have called, stopped by, written, or emailed us to express your condolences. We miss Lukas very much, especially when we imagine him as he would have been, taking part in our lives. We are trying to get back to those lives now, and look forward to seeing all of you and giving you a big hug in the near future.

Lukas' memorial service will take place at 4:00 pm on Wednesday, January 8th at the Day Chapel on the grounds of the State Botanical Gardens in Athens, Georgia. It will include thoughts and prayers from friends and family, photos of our son, and a brief reception afterwards. You can follow links to learn more about the Day Chapel and to get directions. We look forward to seeing you.


A Memorial Service was held on January 8, 2003 at the Day Chapel in the State Botanical Gardens of Georgia. You can view the comments of friends, family, and Mark and Laura below.