February 26th, No, you don't get a stick of gum with that.

Kathryn continues to do well, and had two appointments this week. The first was physical therapy which, for an infant, is pretty uneventful. The second appointment was Katie's fist time with her pediatrician, which was also supposed to be uneventful. We didn't expect to have any news until we meet with the neurologist in about a month. But we'll get to that.


First, I'll give you Katie Beth's rookie trading card stats. Trade them with your friends and collect the whole set. KB continues to climb the ranks in size, moving from the third percentile in weight to the fourth, which means 96% of the other kids are bigger than she is. So much for my dream of siring a heavy weight boxing champion. She's still eating strongly though, and the way she can chug a bottle you'd think she was preparing for college. Her length puts her in the 13th percentile (long and skinny; sound familiar?), but her noggin' is in 20th percentile, thanks to the ventriculomegaly forcing her skull out a ways in the back. She logged first casualties by pooping yesterday too. I only mention it because so many of you keep asking me if we've been pooped on yet. She got both of us during the newborn photo shoot with Dana Todd, so now you can stop asking me that one. Trading card pictures have been uploaded to this site, but a lot more are available on facebook.


Meanwhile, back at the pediatrician's office…


Dr. Bartos was going down this list of stats, reviewing her muscle tone (weak, but not terrible), her circulatory system ("so-so, don't be surprised when her hands and feet turn blue if she's cold, but don't worry about it when they do"), her very long chain fatty acids (normal), weight (small, "but [Robyn and I] aren't Samoan"), length (small, but fine), head size (good, but a little large compared to her length).


So, did you get that? If you haven't been earning your medical degree from university of wikipedia along with Robyn and I, you might have missed it. Her very long chain fatty acids (VLCFAs) are NORMAL! For the last week or so the only operating theory has been that Kathryn has some kind of storage syndrome. The neonatologist, neurologists, and myriad other specialists have been pretty sure this was the problem. They haven't been testing for anything else, haven't talked about anything else with Robyn and I, and were confident enough that they started talking with us about what that would mean (6mo to 2yrs to live) which we have passed along to you through these updates. Here's why her VLCFAs are important. Typically peroxisomes catabolize VLCFAs to release energy into your system so you can run and jump and play or grow and develop, but syndromes like Zellweger's show an "impared peroxisome function" which results in VLCFAs being accumulated in their blood. But that isn't happening to Kathryn—her VLCFAs are normal, as in not elevated. I asked Dr. Bartos if normal VLCFAs meant what I thought it did and he would only tell me that we won't know anything for sure until we hear back from the Mayo Clinic, but "it's a strong indicator." If her problem isn't a storage syndrome she probably won't have the shortened life expectancy we were previously told to expect, although she may still suffer from "severe mental handicap" or "be perfectly normal." According to the Children's Memorial Hospital, "The long-term outlook for a child born with mild or borderline [10cm – 15cm] ventriculomegaly is excellent if it is an isolated finding. Approximately 90 to 100 percent have a normal outcome, giving the child an outstanding quality of life and a normal life expectancy." Kathryn's is 16cm which is only 1cm on the "severe" side of the line, but it's a full 6cm from "normal." It's beginning to look more and more like an isolated finding though, which gives her a fighting chance I think.


Perhaps the doctors were wrong in their preliminary diagnosis. We won't hear definitively on the genetic testing for another couple of weeks, after all. Maybe she belongs to the minority of cases that don't exhibit these defects. Maybe 100 other things explain this and you can call it whatever you want, but as for me and my house we'll call it a miracle. We've seen too many things that were supposed to happen, or not supposed to happen and can't be explained. When we get confirmation in a few weeks, we'll send another update. In the mean time, keep praying with us.




Originally posted to http://www.carepages.com/carepages/KathrynElizabethSchlichter

February 19thB, Home Sweet Home

Kathryn was discharged today, and looking better than ever. The normal birthing bruising is almost gone, her sores are going away, and everybody I give a dollar to tells me how beautiful she is. She has a dozen doctor appointments scheduled for the next week, but most of it is just routine stuff that everyone has to do with newborns. We had a great visit with some family from SoCal this morning, and an extremely upset ride home. Ten seconds in the car and she was screaming so loud she couldn't breathe. It's nice to be home now and hear her crying upstairs while I drink Mt. Dew and watch TV. She's quieter when she's so far away. I'm sure it's Robyn's turn to change the diaper anyway, but I think I miss the NICU already. There's no stopping for the Schlichters though; we have 20 minutes to rest, our next visitor will be here, and then we'll swing by the bank for more dollar bills and we'll be off to bible study.


Thank you for the prayers, everyone. It'll be 10 – 21 days before we hear any results from the chromosome tests which will, hopefully, definitively identify which syndrome she has. In the mean time I expect things to be pretty quiet around here, except for that very angry scream in the background.


Where did that remote sneak off to…?




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February 19th, Are you sick yet?

When I walked in at the end of this morning's feeding the nurse handed me discharge papers and said "I'm going to give you these to look over in case Kathryn goes home today."


Huh?


She says Kathryn is a strong feeder and gained a lot of weight last night—almost half a pound—and is now weighing in above her birth weight. Doctor Anderson has been saying that he wants to see her feeding well and consistently before she gets discharged, so we'll see if one good night after three days of level to slight loss counts as "consistent." At any rate, we hope to be going home soon. She didn't say anything about Kathryn still being a good sleeper though, and I also noticed a little purple container of what amounts to sugar water. The description on the foil lid says "to help soothe screaming and distressed infants." Hmm. Maybe that's the real reason she wants to send us home.


So what happened to patient 0?


Kathryn tested okay for herpesvirus-5 last night, the contagious part of HCMV. We haven't spoken with the doctor this morning, so what follows is all inferred. Since they haven't put her into quarantine yet and haven't done the lumbar puncture, I'm guessing they're not going to. Perhaps it's possible that she caught HCMV after birth and that's why her brain doesn't look like it should if she had been infected in utero. If that's the case, my guess is that it makes a storage syndrome the only other active theory right now. Again, I'm not sure about any of this, so we'll have to wait and see what Kathryn's doctor says today.


And just like that the roller coaster rockets back up. Is your stomach a little queasy?




-----------------------
A lot of people have asked how they can help. Mostly what Kathryn needs is big screen TVs, vacation homes, and really fast cars. She's registered at Ferrari of Los Gatos. Just kidding. What she really needs is prayer for healing. Robyn has the more tangible needs, visitors and food, so I'm adding the care calendar link here. I know, ANOTHER website to follow. It's a pain, but it's a big help to us in organizing visitors and meals.


To volunteer for a meal or to schedule a visit click on
http://www.carecalendar.org/logon/103494 and enter
the following information in the appropriate spaces:
CALENDAR ID : 103494
SECURITY CODE : 3662




Originally posted to http://www.carepages.com/carepages/KathrynElizabethSchlichter

February 18th, Is it better to have loved and lost?

Shortly after typing up the last update we were told our little Katie Kat had tested positive for human cytomegalovirus (HCMV) in her urine. Side effects include deafness, blindness, an inability to control her muscle movements, and a buildup of salt in her brain (calcification) which "decreases IQ levels dramatically" according to wikipedia.org and Katie's doctor. She would be moved to a quarantined area which would mean gowns, masks, no touching, and absolutely no pregnant visitors. Treatment is administered centrally which means a lumbar puncture would be done and side effects range from seizures, blood clots and fatal pulmonary embolisms to headaches and vomiting. It's also a carcinogen and mutagen. So that's a bummer, but God continues to work in mysterious ways. HCMV is also highly infectious and although it presents as a common cold in most people, in unborn children it results in, well, Kathryn. So, Cia, it's a really good thing you didn't come to visit on Thursday. Short of almost going into labor, what else would have stopped you from coming? Robyn and I continue to pray for you, and hope you stay pregnant all the way to term. Katie's doctor tells us that HCMV could possibly explain all of her conditions, but it's probably not the only cause. The MRI of her brain shows a very symmetrical enlargement and the calcification in an infected brain isn't usually evenly distributed. Like salt buildup anywhere else, it tends to be clumpy or concentrated in one area. Katie Beth passed the retinal exam yesterday, which means if we decide to treat for HCMV she probably won't suffer blindness, and she looks at me when I talk so, though they haven't done the hearing tests on her yet, I'm sure she's not totally deaf. As for muscle control, what newborn has discernible muscle control at five days? So we'll have to wait and see on that one. Her neck, arm, and core muscles are still "severely underdeveloped," but today she was able to turn her head a little bit on her own, which I think is a good sign.


That lead to a more informational discussion of what her syndrome might be and what it might mean. I had asked her doctor about an article I read last summer about amyotrophic lateral sclerosis (ALS) which affects the white matter in the brain in a similar way to what Katie Beth's MRI showed, and the neurons which originate in the brain and reach into the trunk of the body. ALS took my mom when I was 12, and I've been wondering all week if it might be related. He assured me it's not and that, although they present some similar symptoms, ALS and what KB have are caused by unrelated things. The syndromes they're testing for are storage conditions, similar to tay-sachs which is most common in Ashkenazi Jews. All of the syndromes in this family are fatal, and the leading candidate for Kathryn right now is zellweger syndrome. That gives her about six months (common) to a year (best case) to live. There is also another possible candidate, which would give her a life expectancy of about two years. That's not as much time as we had hoped to have with our daughter, but we're thankful for the time we have.




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February 17th, An Ominous Feeling

Things were uneventful yesterday, which is a nice change in pace. We spoke briefly with the neonatologist, but there wasn't much to say and that's great news. Kathryn's biliruben levels seem to have plateaued, and it looks like she won't have to spend any time under the bili lights for jaundice. If the biliruben counts get too high they can affect her brain development, so we're happy to hear they've leveled off. That's pretty normal newborn stuff though, and we're happy to have something like a normal experience for a day.


He also said that the only thing she needs to do before she can leave is prove that she can eat well. He doesn't want to see her in NICU again after she goes home, and I told him that the feeling was mutual. :) He wants to see her taking about 2oz of milk at each feeding though, which is a very high benchmark for her. The nurses and other doctors think he's a little crazy. Right now she's taking around 30ml; half of what she needs to do. Feedings have gotten a lot easier though, and she's getting into more of a rhythm today. We both have hope that in a week or so she'll be eating strong and ready to go home. Dr. Anderson also told us that the geneticist wanted to take more blood to run some additional tests. He was concerned because they want to take about 12% of her total blood volume. I asked him if there was an urgency to it; if they identify the syndrome, is it something they could treat? His response was that, if she has a storage syndrome like they think, it's not something they can do anything about. This morning we were told that they took the blood to run the tests, which is fine but a little strange.


Robyn commented that she felt like the doctors were dancing around something. "Do you get the feeling that, when the nurses and Dr. Anderson talk to us, they know something we don't and they don't want to tell us?" I do get that feeling. There's a heaviness in the air, even when all the news is good like today. Maybe I'm just a pessimist though.


I staged a prison break this morning for Robyn and took her to my dad's house to shower and get out in the sun. We only had about 45min, but it was wonderful and I could see a marked improvement in her spirits. Her hair was washed for the first time in almost a week, and when she came out of the bathroom she exclaimed "I forgot that I'd had a haircut last Friday!" That was a nice treat for her, like a mini-makeover and the time under the sun, even though it was in the car, did a lot for her mental state.


On the way home we talked about how happy we were to be doing this together. There isn't anybody else I'd rather be doing this with and, as we looked back, we realized it all started with a bathroom break. About five years ago Robyn saw a flier in the women's bathroom at our church for a young married's game night. The afternoon of that social event we had been looking at houses in Livermore, and found what was eventually to become our house. It was close to the church, with plenty of space for hosting gatherings with access to a park for kids and even huge parties. At the game night we found a group of people that were fun to be with, were genuinely interested in us, and who cared for each other. You could see it in how they interacted with each other. We knew right away that it was a group of people we wanted to be with and we started attending their bible study regularly soon after. At the time it was about seven couples, but over the next year grew to about 35, and eventually to around 50 couples every Wednesday. That's 100 married people getting together on a Wednesday night, learning how to improve their marriages, swapping tips, bond, and build a community. I've seen people make cuts in their budgets and sell things they own to put food on another family's table. I've seen couples who were living separately and working with the lawyers to divorce turn around, save their marriage, and how have another kid. Serving this community for so many years taught Robyn and I a lot about how to worship God with everything we do and keep our relationship with each other strong. As we talked in the car on our way back from her shower, we thought of couples we've seen pass through our community that might not be able to handle this type of stress in their life. But we've been in training for five years now, and, at least so far, our spirits are strong and we're as in love as ever. God works in mysterious ways I guess.


So, Barnetts, Butlins, Dos, Joneses, Petersons, Sprayberrys, Stockhauses: THANK YOU FOR OPENING UP YOUR GROUP AND HOSTING THAT FIRST GAME NIGHT. I'm sure it hasn't always been easy for you, but you can't know how many lives have been changed by the community God built through your service. Kathryn's is just the most recent in a very long list.




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February 15th, Test results

We got results for the MRI, EEG, and some more blood work late last night. Everything came back clean and negative, which means we learned nothing—and that's a good thing. All we could have learned from those tests is that something is wrong so, as we've done since late January, we focus on the fact that despite what the doctors tell us, all indications are positive. You really wouldn't know anything was wrong if there wasn't a doctor to tell you so. With all of these results back, it will probably be a few weeks before we actually learn anything. Until then, all that we know is positive, and that makes it easier to stay positive ourselves.

The neonatologist stopped by on his way home last night and commented again how surprised he is at the amount of improvement in her skull shape. This is really great news because as the shape of her head begins to approach normal we start to think that the pressure on her brain might not be as bad as we were originally told. That would be a great sign for her future development. The nurses also commented this morning that her ears seem to be mysteriously creeping their way back up her head into an almost normal position as well, and Robyn and I have noticed that her lower jaw is moving into a more normal position too. None of these things were supposed to happen, and we're thankful for every piece of good news.

Kathryn herself seems to be doing well. She's cuter than ever, and getting better at eating. The shape of her palate makes feeding difficult, but one of the many benefits of being in the NICU is constant access to the lactation consultants (or, as I've taken to calling them, "boobie instructors"). These ladies have helped Robyn learn how to use hers really well, and Kathryn seems to be doing a lot better. Yesterday she was put on formula to supplement the breast milk, but today she doesn't seem to want it anymore and gets almost everything she needs from Robyn. She even started urinating a little today which made me happier than I ever thought I could feel about baby pee. This is all normal newborn stuff, but for us it's one more sign that she's developing normally, and it means she's one step closer to leaving NICU and coming home! There is still some uncertainty about exactly which requirements need to be met before she can leave, but this is definitely one of them. We're hoping we'll learn more tonight and she'll be released soon, since Robyn is now on "boarder" status and not a patient. That means she's welcome to use a room for free so she can be close to Kathryn and the NICU as long as they don't need it for a new patient. If a bunch of you ladies come in and give birth, Robyn goes home—so keep your legs crossed for a few more days (especially you, Cia)! Kathryn's bilirubin levels are staying surprisingly low, and she hasn't needed to be under the bill light yet. That will probably change, but for now jaundice remains in the "concern" category, and hasn't moved to the "problem" category, and as far as problems go, jaundice isn't a big one. This too means she's one step closer to leaving NICU.

Being in NICU has some good benefits, like putting Kathryn on a SOLID three hour cycle, but it adds a lot of stress to our lives as well. The constant feedings are normal baby stuff, but that hour between feedings that we would normally use to sleep and eat is more like 15 minutes after nurses, Kathryn's specialists, Robyn's doctors, visitors, and flower delivery people are through stepping in for "just a quick second." It's starting to weigh on Robyn today, and she really wants to sleep for more than a few minutes at a time. I made a trip to the house this afternoon to do laundry and pick up a few things, and being out in the sunlight for the first time in days did wonders for me. Tonight we're going to sneak out of the hospital and sit down to eat a real meal between feedings. Wish us luck!

Today has been a good day, but that's easy when all the news is good—or, at least not bad. Once we learn more fully what her condition is we'll have a different reality to face. For now, spirits are high and we're enjoying our time with Kathryn.




Originally posted to http://www.carepages.com/carepages/KathrynElizabethSchlichter

February 14th, No news

Kathryn is looking much better today, and we expect to be sending out pictures soon. We've held off in hopes that her appearance would improve, and today that was indeed the case. She's still severely bruised, but her head is less malformed than it was previously. Even the neonatologist was very surprised when he saw her this morning. That's great news coming from a specialist who sees things like this every day. He knows what normal molding looks like, and knew right away her head wasn't right. Keep up the prayers, they're certainly working!


We also learned from the neonatologist that Kathryn's ultrasound on February third also showed excess fluid around her heart. Robyn and I don't remember hearing anything about this before today, and it was the beginning of a long down-swing this afternoon.


We had hoped to learn the results of the MRI today as well, but it's looking less likely as the day moves on. We learned from the neurologist this afternoon that the MRI returned at least one new finding however. They weren't looking for this, but the MRI showed something wrong with the white matter in her brain, and they think specifically it might interfere with the development of her myelin. The short story is that she's very likely to have problems getting messages from the grey matter (thinking part) of her brain to the rest of her body. After consulting with colleagues she was only able to come up with two possible causes for her specific condition, which she mentioned are extremely rare, but didn't want to share them with me until she could narrow it down to one. "Google is not your friend" is what she told us. This is also what we've heard from the Randolphs who, as many of you know, are aware of this first hand. She said they're going to run chromosomal tests specifically for these two conditions and get back to us. In addition, she ordered an EEG which was conducted at 2:30 this afternoon.


So we learned that in addition to everything else, she may or may not have a heart condition and we continue to wait for the MRI, and now EEG, and more genetic tests.


Her feeding has gone pretty well, but because of the size and shape of her mouth, she isn't getting enough colostrum down, so we've added formula to the mix.


We've also had several visitors today, including a few of our caretakers here at Kaiser who are Christians and stopped in to pray with us and offer us encouragement.  One of Robyn's delivery doctors who prayed with us also said that since Kathryn is in NICU and might be released to us tomorrow, he can keep Robyn as a patient here for one more day so we can stay close and continue to breast feed.  What a blessing this is!  Whether or not Kathryn is actually released from the NICU will depend largely on whether or not she can reverse her weight loss.  The neurologist said that, because of her condition, she doesn't want to let Kathryn get too far until she's sure Kathryn is completely stable—more so than most otherwise healthy infants need to be.

Your prayers are working, and we've been blessed to see God working such miracles firsthand.



Originally posted to http://www.carepages.com/carepages/KathrynElizabethSchlichter

Kathryn is born

February 12th, 7:46PM
We're all checked in at Walnut Creek Kaiser and Robyn has been attached to the machine that goes "bing." A few people raised concern over the lack of concern of our doctors in our last e-mail. We've spoken with the delivery doctor, who spoke with the neonatologist about Kathryn's ventriculomegaly, and they've told us what their plans are for testing Kathryn after she's born. Google tells me it's all pretty standard and about as much as can be done.


The nurses seem to think we might be here for a few days, but most of it will be sitting around waiting for the machine that goes "drip" to make the machine that goes "bing" do so a little faster. At the moment we're trying to slow the bings down however, and so we're walking through the hallways which I can only describe as unnerving. The screams, cries, and curses send chills up my spine and I wonder if we might have stumbled into some kind of horror movie.




February 13th, 9:54AM
Kathryn *just* arrived. Problems with upper respirtory, and definitely some kind of syndrome. Off to NICU.




February 13th, 6:05PM
All,


Let us start by saying thank you to everyone that has been praying, calling, e-mailing, texting, and dropping by to offer love and support for the three of us today. it has been a little overwhelming, to be honest with you. Thanks especially to Cia who stayed up all night with us, handling a barrage of requests for updates and being point woman for us. I don't think you know what a blessing you've all been to us over the past 24 hours.


We just now sat down with a few minutes to relax, so we wanted to update everyone with what we know. Sadly, it isn't much. Her ventriculomegaly is worse than originally expected, causing her head to be swollen and misshapen. One of the neonatologists confirmed that this is a congenital disorder, and not the normal molding caused by passing through the birth canal. This is the biggest concern right now, since the pressure on her brain is likely to interfere with her mental capabilities. She also has a malformed upper respiratory system (misshapen mouth, palate, and nose) which he thought might prevent her from breathing on her own. This later turned out not to be the case, and she is able to breath more or less okay. It does cause her trouble while feeding, however, we've already had some success there. Her ears are also a little lower than normal and each malformed in its own way. There is an MRI scheduled for 8:00PM tonight to look at her brain in more detail and determine the cause of the ventriculomegaly (clot?), but it isn't likely that we'll learn anything from it until tomorrow or Wednesday. Pictures have also been sent to a geneticist who will stop by at some point tonight on his way home from Kaiser Oakland and try to determine which syndrome she might have. Once we know these things, it's possible that we'll have a better understanding of the long-term effects and what type of lifestyle Kathryn will be able to lead.


We've had many offers to bring whatever we might need, but since my dad is close by Kaiser Walnut Creek (and doesn't have a job to attend in the morning since he's retired) we'll probably be leaning on him for most of that stuff, and the Bauers are taking care of the dogs. The flood of communication from you all has been overwhelming, and we're sorry if we haven't been able to get back to you quickly. Know that we're well cared for by the staff here (who are wonderful), and mostly what we need right now is time. One of the nurses stopped by and said she couldn't imagine what we're going through. I replied, "neither can we" before I realized the truth of that statement. None of it seems real right now, but it's slowly sinking in.



Originally posted to http://www.carepages.com/carepages/KathrynElizabethSchlichter