• November 15 - November 30
• December 1 - 15
• December 16 - 26

Please join us in welcoming Lukas Willem Bierema Ebell to our family.That's right - he couldn't wait to join us! A non-stress test showed a flat heart tracing, with little variability. That led to an ultrasound on Friday afternoon, which showed that Lukas had no fluidaround him, and had actually stopped growing a few weeks ago. There wasn't any choice - he had to come out, and only had hours or days to live in utero. After an urgent C-section, he was born kicking and screaming at 4:52 pm, with Apgars of 9 and 9, but only weighing 659 grams (1 pound, 7.2 ounces). Although very small, about the size of a 25 week old, he has the maturity and reflexes of a 31 week old. (For you medicos on the list, he had severe oligohydramnios and intrauterine growth retardation). As you can imagine, this is a very difficult time for us, and there will be many ups and downs in the coming weeks and months. We're going to do our best to keep this site up-to-date so you can follow Lukas' progress with us. We look forward to your thoughts, love, and support.

All things considered, Lukas is doing great. He has never required a ventilator, and at 12 hours was breathing room air. He is now (25 hours of age) getting a little oxygen again so he doesn't have to work quite so hard. His initial chest x-rays, heart echocardiogram, and brain ultrasound today were all normal, and he remains vigorous. He is beginning to suck on his tiny little pacifier, grasps at our finger, and responds to our touch. He is truly precious, and we love him very much. Although tired and sore, Laura is doing well. She was up in a wheelchair within a few hours of surgery to visit Lukas in the neonatal intensive care unit (NICU), and the next morning was already walking 20 yards down the hall to the NICU. She is a trooper, but needs her rest over the next couple of days. Both sets of grandparents are arriving from Michigan (Bieremas) and Florida (Ebells) tomorrow afternoon, and we look forward to seeing them.

Lukas had to go back on his oxygen today, and received one blood transfusion and two platelet transfusions. His umbilical artery catheter had to come out, and he is getting an arterial line as I write this (10 pm). Otherwise, he is doing fine. There is a small patent ductus arteriosus, which means that there is a connection between the arteries that supply the lungs and the rest of the body. This makes it a bit harder for him to oxygenate, and if it doesn't close on its own by tomorrow, he may have to have a procedure to close it via catheter. It can sometimes be done with medication only, but his platelet count is low, and his neonatologist hesitates to use the medicine (indomethacin) for that reason. We'll see tomorrow. As you can see from the photos, Laura got to hold Lukas for the first time today. He melted our hearts - it was important for all of us to have a chance for some real contact. We hope this becomes more frequent as he gets stronger. Speaking of the neonatologist, she is terrific. Dr. Faase is Dutch, and grew up about 20 miles from where my mother's family lives in Aachen.  She learned her trade in Munich, so we think she is the perfect person to take care of young Lukas Willem. We all deal with things differently - I tend to intellectualize. Because I am afraid of flying, I know every detail of every plane out there, including how often they crash, the best and worst airlines, where to sit, etc. With Lukas, I deal with my fears in the same way. I went home and consulted the Cochrane Library, which contains the Oxford Perinatal Database, and is part of our InfoRetriever software. I printed an "evidence report" on preterm birth and several other related topics, then read each of about 150 summaries. I identified about 10 key things that I thought the neonatologist should and shouldn't be doing. She was ten for ten, and knew her studies and evidence cold. Needless to say, I sleep better now.

Lukas had a better day today. He came off the dopamine overnight, which was being used to keep his blood pressure up. The ventilator settings were reduced somewhat during the day as he needed less help, but then had to be upped a bit later in the day. Overall, better than yesterday... We had great news in that his cranial ultrasound was read (preliminarily) as normal. We had been concerned about a bleed, so learning it was normal was probably the best news I've ever heard in my life. I hope that there is more good news in the future.

Laura finally felt better today - her spinal headache went away in the afternoon, although the lack of pain in her head means she was more aware of the pain elsewhere. Overall, better, though. She went home this afternoon, and we had a nice dinner with our parents. It's good to be home, although we wish Lukas could have joined us tonight.

The staff have been terrific - every nurse in the NICU has taken lots of time to patiently explain how Lukas is doing, and they are incredibly attentive. It's hard to imagine a more difficult job, and they do it with wonderful grace.

Lukas had trouble maintaining oxygen levels on the ventilator, and is being transferred to Grady Memorial. It is a big, scary place in downtown Atlanta, 10 stories tall, but has one of the top NICUs in the state. Affiliated with Emory University, they have the equipment and sub-subspecialists that Lukas needs right now. On arrival, we first sat for an hour in the waiting room before they realized we were there. Dr. Dudell is very nice, and has a great reputation around the unit. There are students and residents around - it is a teaching hospital - which is different from ARMC. 

Lukas is now on a high frequency oscillating ventillator. Picture your child vibrating at about 300 beats per minute while attached a blender that is pulsing air into his lungs. Sounds horrible, but is actually much easier on his lungs than the traditional ventilator. He was initially started on fairly high settings. The doctors were concerned about the amount of fluid that had accumulated in his belly, which could be caused by a variety of reasons. One concern was infection caused by a hole in the intestines, but that didn't appear to have happened (fluid drawn from the belly was clear and had no bacteria or white blood cells). The cardiac echo showed that the pesky ductus arteriorus was open (after apparently having closed) and could be contributing to his problems. If it doesn't close, he will require ligation of the ductus. This involves opening his little chest, all 6 square inches of it, finding the tiny 2 mm ductus, and tying it off, then closing him up. Although done in the ICU rather than the operating room, it is still a terrifying prospect for us.

The great news was that Lukas responded really well when they gave him some surfactant. He almost immediately required less oxygen and lower ventilator settings (i.e. it didn't have to do as much work for him). What is surfactant? It's stuff that your lungs make to keep the air sacs and airways flexible, and does other good things for the airway as well. The initial studies were done at UM while I was an intern. I remember they would put drapes around the incubator and play Beach Boys music (get it? Surfin' Safari?) to mask the rest of the folks in the nursery from whether the infant was getting surfactant (Exosurf) or placebo.The stuff works, and along with the high frequency oscillator has revolutionized care of these fragile young kids with breathing problems.

11/21/2

Good news this morning. His neonatologist was "very surprised" at how well Lukas did overnight, with much improved breathing, and requriing about half the support that he had needed when he came in. His liver and kidneys were working fine, and his blood counts were holding their own. More good news with the cardiac echo. His PDA was smaller now (from "moderate" to "small to moderate") and the pediatric cardiologist did not recommend surgery at this point. He will repeat the study on Monday, or sooner if Lukas has a turn for the worse. All the cultures came back and were negative, meaning that no bacteria grew from any of the specimens that they drew while Lukas was in Athens. The transfer note from the neonatologist in Athens referred to a small placental size, which could explain why Lukas stopped growing in the womb. The cause of the small placenta is uncertain, and we are trying to get the full report faxed over to us. We are slowly figuring our way out around here. It's a big place, but the people are friendly and the staff at the NICU has been terrific. They let us basically camp at his bedside, and we have been here for about 12 hours so far today (it is 9 pm), leaving only for dinner. The hotel is spartan but clean and safe and closeby, and we figured out where there are a few restaurants that don't feature a clown or chihuahua in their advertisements. It looks like we will probably be here well into next week, and at best won't return to Athens till Thanksgiving.

11/22/2

Lukas was doing OK again this morning. The plan today is for the geneticist to stop by and examine him, cardiology to repeat the echo to check on the patent ductus arteriosus (PDA), and continue to wean him from the high frequency oscillating ventilator. We ran to Athens to get clothes and books for a week's stay, which is what we are now looking at - minimum - in Atlanta.

The geneticist said that Lukas looks like what we think he is - a beautiful little boy, with the emphasis on little. No changes that suggest a chromosomal problem, although the final answer will be in the karyotype, and that will be at least another week. We tried the wean, but it didn't take. After about 45 minutes his pCO2 (carbon dioxide) was 85, much too high, and he had to go back on the vent. He did fine back on the "hi fi" vent, and rested well overnight.

11/23/2

Lukas had a fairly quiet day today, with one exception. He was placed on his stomach for a change of position, and drooled quite a bit (or as they say down here, a good little bit). This loosened the adhesive on the tape holding his breathing tube (connected to the ventilator) in place, and it slipped out a bit. In trying to fix it , it slipped even more, and had to be pulled out all the way and reinserted. Scary time - lots of running around, bagging him, and so on, but he tolerated it extremely well and was back to par within a few minutes. During the day he gradually came down a bit more on his settings, and rested quietly. They are doing some studies on his bowels now, running some barium through them to make sure they are working and intact. Should have that answer tomorrow or Monday. The PDA was a bit smaller today, which is encouraging, but may still require repair. The echo will be repeated Monday and I suspect that may be the final test before deciding to repair or not repair.

Laura's feeling better - we found a nice Thai restaurant in the Virginia Highland neighborhood (Surin of Thailand), and went there last night and tonight. Tomorrow, Italian. Our typical day here is:

• gourmet continental breakfast at the Comfort Inn
• get to the hospital around 9 am
• spend the day there - Mark delivers lunch from the hospital cafeteria, as it is too far of a hike for the still recovering Laura
• dinner out (our break for the day)
• a check-in visit after dinner with Lukas
• back to the hotel around 10:30 pm or so

It is wonderful that we have the flexibility and support from our families to allow us to be here. Thank you!

Our good friend George Seifert flew down from Michigan Friday, and spent last night and today with us. How wonderful - it was a comfort to have him here. He is a family physician in Marshall, Michigan, and I went to college, med school, and residency with George. We have traveled all over the world together (I've probably logged more miles with him and Jim Boyd than anyone but Laura!), and we both very much appreciate his visit. He'll spend tomorrow with us before flying back home. Thanks for Sheri, Britta, and Anna for doing without their Dad for the weekend, especially since little Anna was starring in "The King and I" and it premiered Friday!

11/24/2

Below are some photos taken today with our friend George (left) and Laura's parents Ken and Phyllis. We wanted to minimize the number of flash photos and disturbance of our little guy, so I'm stuck looking constipated instead of getting a chance at another photo. Oh well. Phyllis is holding her hand up to compare it with Lukas (yup, he's in there somewhere under all those tubes!). Today was pretty quiet - not much typically happens on Sundays, and today Lukas just spent the day gradually 'dialing down' the settings on his respirator. His labs remained fine, and the barium continued to work its way through his gut, making it unlikely that he has an obstruction of his bowel (a good thing). It was great seeing Ken, Phyllis, and George, and we very much appreciate their effort in coming to visit. Tomorrow promises to be a busy day, with another ultrasound, and possibly another attempt at weaning or even an attempt at correction of the ductus arteriosus. We're going to try to get a good night's rest.

Happy Thanksgiving everyone! We are certainly thankful for all of the love, support, and warm thoughts from our friends and family as we have all watched Lukas' progress over the past 13 days. We just had a great turkey dinner, prepared by Ken and Phyllis Bierema, with a fried turkey from Larry Hodge. Larry is a contractor in the Athens area who remodeled our house, and it was incredibly kind of him to bring us this very tasy turkey. It's also great for me and Laura to have a little time at home to do laundry, reload books and computer files, and see the dogs. Islay, our 10 week old golden retriever puppy, keeps getting bigger: go figure! Now Lukas just needs to do the same. Islay, in one of her rare calm moments, is shown at right. She is keeping Ken and Phyllis busy! Lukas had a good day, with some reduction in his need for support from the ventilator, an indicator that the atelectasis is probably improving. We met the neonatologist who is on for the weekend, Dr. Augusto Sola, and he spent quite a bit of time explaining how Lukas was doing and what the plan is for the weekend. He is very hopeful that we are able to reduce his need for ventilatory support, and perhaps get him onto the conventional ventilator soon. So are we! We checked in with his nurse this afternoon just before dinner, and all was going well. We will be returning to Atlanta shortly (around 6 pm) and checking into our new hotel, one which has a fitness center. We're looking at one more week minimum of our November vacation in midtown Atlanta. ;-)

When we returned from Thanksgiving yesterday afternoon, Lukas was requiring some dopamine to keep his blood pressure up. We spent some time talking to his nurse and the resident on call to try and figure out what had happened. As is often the case, there was probably more than one cause, and we may never know exactly what happened. Because his blood count was a bit low, we gave Lukas a small transfusion. It may also have been related to being started on phenobarbitol, a medicine being used to help him get rid of the bilirubin that has been building up, in combination with a slightly higher dose of morphine, the combination of which can cause blood pressure to drop. The good news is that during the morning today his blood pressure went up, and he is now off the dopamine completely. Dr. Sola spent a lot of time with us today, which was much appreciated. We went over Lukas' cranial ultrasounds, which show some minor abnormalities, but he feels it is likely that they will improve on their own over time. There is no sign of serious or major brain problems, which is a big relief to us. Lukas' abdomen is still swollen, but felt a little softer today to the pediatric surgeon. There is a small collection of air in the region near his heart (pneumomediastinum) which is of little importance, and another small collection of air in the left lung related to the surgery (pneumothorax) which is more problematic. Dr. Sola spent quite a while positioning Lukas and working with his chest tube to try to get rid of that extra air. Part of the problem was that the tube was lying posteriorly, while the air was anterior. He put Lukas on his tummy, so the air would rise to meet the tube. So far, so good...his oxygen levels in the blood look good at this writing. We hope to try to put him on the conventional ventilator soon.  This was a good day, and it is always easier to return to the hotel in the evening after one of those. Hopefully we can string together two or three in a row! Allison visited today - it was great to see her, as usual. She and her husband Gene just finished a 13.2 mile race yesterday that finished about a mile from Grady Hospital. Way to go! We're hoping that Lukas will run that race in about 20 years.  The picture at left shows Allison, Laura, and little Lukas lying on his tummy, showing us his better side. His head is in a stocking cap near Laura's left hand, and his bottom is in a white diaper.

December 1-15