Our Kids are Driving us Crazy

So, Eva and Eli woke up at 5, after several night wake-ups. (Emily didn't take well to them waking up so early, but we'll just leave it at that.) I took them around 5:30, got them to nap briefly, handed them off at 8:30, slept to 10:20 myself, went to church. Then I took a huge nap with Sam (I slept like two hours, but Sam slept four hours--so not at all tired.) Then Emily took a nap while I was with Sam. Now we three bigger ones are up and the twins are down. Pure craziness. A while ago I saw a review of a popular children't book out now called "Go the F__ to Sleep." The hip reviews I have all seen scold the passive aggressiveness of the book, the anti-child tendencies, etc., etc., but what they forget is that not sleeping will make you crazy. It will make you crazy. There's a reason bad people use it against prisoners, why it's included in military training, etc., etc. It will make you crazy. This is one of the great mysteries of parenting, that you can love someone so much and want nothing so much as to be able to help them, but they have their own wants and needs.

OK, that's out of my system now.

The day was otherwise okay. Skipping the sleep drama, we were a picture of nuclear family bliss. We enjoyed church. We had a trip to the park. The evening has included viewings of Underdog and Chicken Little. A coworker and his wife and daughter stopped over in the afternoon. Sam's wearing his moped helmet and dancing around pantsless (last night he even slept without a diaper with no problems). A bath is in the future. From the happier perspective of evening (after naps and dinner), it was a fine day, solid parenting, etc.

Onto Eva. The little stinker is 6.6 again. What are you doing to us Eva?! The flip side is that she is very cute, alert, responsive, friendly. She was melting hearts at church today. She smiled her way through several sets of arms and made many new friends. Tuesday we go to the hospital to draw blood and find out what we can find out. Still not sure of an exact date on the genetic report, but the more I read the happier I am that we will soon (eventually?) get real certainty on this.

And now some recent pictures (blogger was acting up the last time I posted).

Blocks, walking, and more

A busy few days here. Eli's pulling up really well and clearly wants to walk. They're nine months today, and both show great advances in the last few weeks. Eva's articulating more and has said "da da" some the last few days.

Emily's just put shoes on each of them--it's a lot of fun and I'll post pictures soon.

Sam and I have been doing blocks. We have some of the big plastic ones. The more we play with them the more we can do. Recently we built a tower as tall as me and we've experimented with steps and different features.

Eva's driving us nuts with the weight, however. Today she is again in the 6.6/6.7 range, which means she's essentially where she was three months ago :( Tomorrow she'll have been out of the hospital two weeks. On Tuesday we go for the two week check up. We'd really like results soon. I kind of wish they hand't given us the initial diagnosis, but I'm glad they can do the testing. Today I read it's nearly impossible to get this testing in the States.

On the train...

Today was my first day doing a one-day trip to center city for a committee meeting. On the one hand these meetings are good experience--a mix of two languages, lots of terminology I don't know, a chance to get to know people from different parts of the island, etc. On the other hand, I always struggle with the business vocab (words like "awning," "utilities," etc.) and I'm not able to contribute a lot to the questions at hand. Stilll, I'm almost back home and door-to-door it'll have been about eight hours. I like the high speed train.

Other good news... Eva's up to 6.6 kg! Yes, this makes us very happy. I don't know what's doing it. I keep hoping this was all just teething. She's already got two in and I think the next two will be in soon. She's eating tons of food and we're trying lots of potassium rich things, just in case. I'm getting slightly better at giving medicine, but, wow, it would be really nice if we don't have to inject medicines two a day (or more) for the foreseeable future.

I'm also trying to figure out how timing will affect all of this. In theory, when they're doing the testing they should be starting with the likeliest syndrome and then moving on to the others, something like 3, 1, 2, 4, 5 and then G's. If it takes a few weeks it may mean they're not finding anything. I think Emily and I were both ready to believe she had this the last few days, but now, to borrow the words of my cousin Mary, maybe she was just faking it.

We still feel like we're a little bit rocky at this whole parenting thing. Emily texted me today because she had trouble getting Sam to go to school. We spent a fair amount of time together yesterday, but it is hard to get one on one with each kid, have a house that isn't a total pit, and do some work. And we're feelilng a bit distracted with daily life right now.

I think we could use a vacation. Maybe one weekend we could hop the high speed train out of town and get a couple of days somewhere nice. I'm not quite sure how this would look, but I'm thinking it would be good for our state of mind.

Saturday at home

It was a good Saturday. Sam: took a walk, played with play-dough, played with trains (you can see the track above), played with cars, played with blocks, took a long nap, watched "Cars," pasta for dinner, went swimming with mom. Not a bad day at all. The house even looks okay. Everyone ate well today. Tomorrow's church, which should be fun, followed by a quick trip to the local market and Emily wants to check out a nearby baby store.

Waiting, waiting

Lately I've been singing this song to myself. It's a Taize song they sing in chapel here. It probably makes the most sense during Advent, but in a sense we're living in Advent right now.

Good things: it's a beautiful sunny day to day, we're getting over our colds, I did some reading yesterday and Emily went to class, took a walk with Sam and Eli this morning, Emily's going to swim with Sam later, found a good online group that knows about what B's looks like for people with it.

However, Eva's gone from 6.8 to 6.5kg which is making us a little nervous. If she goes down to 6.3 we probably should take her in for an IV. Not the end of the world, but obviously would be nice if we didn't have to go in that direction. We're trying a wider range of potassium rich foods: carrots, prunes, grape juice, etc. All are supposed to be good.

I'm off to do play-dough with Sam. More later!

Recovering

It's been a rough summer for the family! I heard today my brother went into the hospital with chest pains. Results all came back fine, but another scare on top of several this summer. And not just scary in the past-tense, but in the ongoing, progressive sense.

The upside is that Eva is eating like a champ. I tried a prune-banana-formula gruel yesterday that she ate two bowls of! Sam had a good day also. He played trains tonight, was doing some sort of story with his alligator and monkey.

The last two nights Sam's also offered some interesting thoughts on his pooping. Yesterday he said "not a cockroach... a poop!" Tonight it was "nice to see you!" when Emily flushed it. It's pretty fun watching the wheels churn in that hard little head. I told Barb and Randy that the other day there was thunder outside and I told him it was thunder, but then a few minutes later he came over and explained he wasn't scared because it was "Underdog!" (a move he's been watching lately). Oh, such an interesting world.

I went to language class today. It was good to be back in it again and it was nice to have some time to practice medical terms and also to be immersed in non-medical things for a while. I really like the people here a lot. I think they really understand basic human struggle. One of my teachers lost a brother to a kidney disease and a sister to a stomach illness. This all happened many years ago, but I could tell it was still close to her. She talked about how she and her siblings and their children were all tested for the kidney disease and four of the five had it.

We're still in the middle of things here but the pace has slowed a bit and we're having a little more time to put things back together. People have been very nice to us and we're grateful for the community we have. We'll check in again soon. Jonathan

Check-up

Today was Eva's check-up. They decided not to do another blood test, just because she had several last week. I'd prepared questions, but then the doctor did a fairly good job of anticipating them. He showed us Eva's blood results from Saturday, when she'd been in the hospital on IV's for almost the whole week. Her sodium and potassium were in the lower end of the normal range, she had slightly low magnesium (which can be a symptom), and she had very high aldosterone levels. I can see why B's is their main guess/diagnosis. The doctor said it should take a week or two to test the blood. I think they basically test each type of B's syndrome, looking at the associated mutations. But then there are probably strains that haven't been identified and there are also people who have the same symptoms (and follow the same basic therapy) but don't show up in the genetic screening. And no doubt there are also many, many people who have just been misdiagnosed (here's hoping).

I'm wanting to blow off language study for the rest of the summer. I'm going to try to stick with it in July, but Emily and I may eventually want to evaluate how much more stress our summer can contain.

Thank you all for following along. We're doing okay. I'm still just tired. When I deal with situations like this, it can really keep me up. I think I've now emailed those who don't read this blog or facebook to let them know what we're working on. I'm grateful for the communities here. I am discovering how patients came to be patients, even if I am feeling a bit impatient with it all.

Two More Weeks

So... I misunderstood when we'd get lab results back. Tomorrow is just a check-up and it may be two weeks before we know for sure about the diagnosis. I'm trying to remain relaxed and calm about this, but of course it is driving me nuts and I'd really, really like to know immediately.

That said, patience is a virtue and hopefully this will give us a little time to think, reassemble ourselves, and return to some sort of normal. I keep trying to remind myself that this is not an end of the world diagnosis and that the main thing is just that our beloved daughter is back to her normal, smiling self, none the worse for the wear.

I apologize to those of you who also thought you'd have a twenty-four hour wait. We'll try to mellow out a bit on our end but to share information as soon as we receive it.

We're out!

I actually wrote this post this morning, but somehow deleted it and apparently there's no way to "undo" on the app I was using.

Funny anecdote: Emily was searching for images of the syndrome and several pictures of Eva came up in Google from my last post, which I think shows just how rare this is. I quickly removed the word from the post, so hopefully they will disappear.

Getting out of the hospital was relatively smooth, aided by Sophia, a colleague's daughter. She helped us finagle the hospital-->car-->lunch-->home transition. The twins went to bed early but Sam took a big nap, so we could be up for a while. I think tomorrow it will just be and Sam and/or Eli at church. Emily and Eva get the day to rest.

That's our news. We're both still trying to make sense of this very weird week. We're looking forward to some sort of resolution on Tuesday and are thankful for supportive family and friends.

Day 5

Eva's really looking a lot better now. She's neither too thin nor puffed up. I'm with her now and Emily and Sam will come by later. This morning they took blood for the additional genetic tests and put another IV in. Her electrolytes look good.

They've given us an initial diagnosis of B______'s syndrome. I'm still a little skeptical. As nearly as I can understand, it's a set of several related conditions where the kidneys expel too much of some vitamins (potassium) or salt. The type she'd have is type three, or classical B's, which is the least severe and essentially requires some drugs. If we keep a close eye on it, it shouldn't harm her development at all and by adulthood she'd be fine. This is my take on it, but I still am reading and, honestly, the writing on B's all reads like a chemistry textbook. It's rare enough that I don't think they even know how common it is. One in a million? A hundred thousand?

To be honest, I'm also still thinking it is probably something else. With something so rare, I think it's as likely this is a combination of the common (dehrydration and teething) and the slightly less common (urinary tract infection?) or somewhat rare (perhaps something environmental) rather than the truly rare. It's also possible something turned up as a false positive. Anyways, we're getting used to the idea of this. It helps to have nice doctors and a good environment and support community. We're trying to communicate with everyone as much as possible. We won't know on any of this definitively until Tuesday. If it is B's, I know there are online community groups and some other resources, and we'd try to find a specialist on it here or in the States just to get a sense of what's involved.

That's the main news. We're doing all right but are a bit tired. I have a tought time getting Sam to bed and doing Eli's feedings. We're very grateful for our awesome nanny, because we would be toast without her. Sam seems basically happy. He asked for Emily a couple of times. He and Eli still see Emily everyday, but splitting things up is definitely a hassel. We're glad we have a hospital that is very close and not too crowded. Being off the main line means we haven't been overwhelmed by visitors. I'll follow up with more later.

Day 4

We're in the hospital now and Eva is looking a LOT better. She was smiling when I came in. She sits up for long periods of time. She is back to her weight from a month ago, although she's still a little puffy. For the last three days we've been in a shared room (although empty the first night) but today we moved to a single room. It's a lot nicer, and I napped with Eva this afternoon. The last two nights our roommate has been a kid with a nebulizer who's in a fair amount of pain, so not super restful. At the same time, Eva's been sleeping lots and lots.

When I came in a doctor was talking to Emily. One of our goals is to try to explain as much as we can as often as we can so that everyone gets the picture. We think this was just slow weight loss because of teething pains. I think Emily and Linda did a good job of keeping her fed and drinking, so there was no crisis, just this continuous loss of weight. We were tricked by several other aspects also. Sam had a period where he leaned up. Eva never had a fever, never threw up, never cried a lot. She was always a little more serious than Eli, so it's not as if she went from continuous smile to the pursed mouth. Anyway, she seems much better now. I think here hospitals are also faster to take people in. Emily was in the hospital for less than three days when she gave birth to Sam, but Eva will get at least five days for dehrydation. It also means that probably we need to be a little less panicked by the thought of a hospital stay here. It's a more common thing and not always a sign of extreme illness.

This morning we also did an MRI. Eva was close to sleep anyways, and they gave her some medicine, and she did fine through the MRI. The info we get back from that should be reassuring in terms of making sure she's still hitting her marks for development. But I am feeling a lot more reassured and she seems fairly sturdy today. Initially we were to leave tomorrow, but they want to do the test for the two rare syndromes just to be sure, but we're thinking that the symptoms are not a close match.

One of our language teachers came by for an hour today also. It was fun to see her. She held Eva and fed her some (picture below). It made us happy to have her around. She's probably one of the most interesting people we know. Her life hasn't been easy, and she can be a little critical, but she also has a totally different way of looking at life.

Emily's saying that Eva Helen reminds her a little of her grandma, who would get her teeth adjusted and then have trouble eating for a while. It was a funny observation.

What a strange few days these have been! The truth is the twins were pretty healthy up until now, which may have also been a piece of why this seemed to surprise us so much. This parenthood thing is really a lot more responsibility than we realized! I know this probably but won't be our last hospital visit, but I wouldn't mind another relatively calm spell for a while. And it may help us to appreciate that as much work as these three are, things could really be a lot more challenging.

(The pictures are a little blotchy because I shot this off my little tablet computer)

Day 3

This has been a bit of a funny day. Now that Emily isn’t feeding Eva every two hours, I’m trying to get Eli back on his regular feeding schedule (late evening and then early morning). Today was Sam’s performance at the nursery school. I went to that and then spent the afternoon with Eva.

Eva still looks a little funny. Her eyes are puffy and she seems to have slept most of the morning through about two o’clock. For about an hour, she lay on my chest and we both rested. I know it’s been a trial for her, and I hope that she’s getting rested. We can now indeed feel the front bottom teeth and I think one has broken the surface. I’m still really hoping that this was the problem the whole time. She seems to be in good spirits. She’s laughing again and doesn’t object to tummy time, and is back to carefully examining everything she can get her hands on. Right now she’s playing by the bed looking at one of those crinkly kids’ books.

For Eva, this was a rest day in terms of exams. The MRI opens again tomorrow and they gave her a day off from blood exams. We’re really grateful for this actually, because I think she’s still recouping and it wouldn’t hurt to have some time to eat, sleep, and get a bit more intentional time. I think we do a good job caring for three kids, but I do feel bad that sometimes it’s harder to give the unlimited attention each probably needs from time to time.

The loving older brother visits
Gnawing on her crinkly book with her hard-won tooth
The patient
Sleepy but snuggly
Her gymnastics (or taekwondo) career is still promising

Sam's Class's Frog Performance

Sam’s performance this morning was very funny. His group did a little play—or whatever the word is for three year olds—about thirty-six frogs. The story told of mommy and daddy frog raising their tadpoles. Then the frogs have different adventures. They were taught a few lines. At one point Sam and others are holding a rope and each frog is supposed to say “what is this?” But Sam just said “snake!” Everyone laughed. Then the teachers explained the “rope” is really a snake. Funny stuff. Don’t give Sam any secrets to keep for a while. He seems to like his class and loves his teachers.

I think he’s doing okay with the hospital trip. Last night he asked for Emily a couple of times. I had him “help” feed Eli before bed, which seemed to help. He really loves his little siblings a lot, even if he can be a little too exuberant at times.

A fun time at school!
Sam's class
Sam lets out the news that this is a snake and not just a rope
Sam spots dad
Waiting to be introduced

Day 2

Nothing new to report today, but we're hoping we'll get results tomorrow from some of the tests that have been done: blood, urine, x-ray, and EKG. Eva refused to sleep for the MRI, so that's tomorrow. (The doctor unhelpfully suggested we discourage her from sleeping tonight so she can sleep for it. Um, no.) Anyway, she's gone from 5.2 kg at entrance to almost 6.2 kg today. So that is a big improvement.

We're still not sure what to make of this. Is the dehydration the cause or the symptom? Were her teeth bugging her and she stopped eating as well? This is what we're hoping for. A couple of genetic syndromes were suggested, but they're all super rare and have symptoms Eva doesn't have.

Eva herself looked a lot better today. She was cooing and smiling when I came in this morning. She slept a fair amount today, but did seem to have more pep.

That's what we know! We're both feeling pretty exhausted. I had trouble sleeping last night. I'm going to try to get Sam to bed at a more reasonable hour tonight. Eli's already down. They both seem enthusiastic about life. Hopefully we'll have more clarity in the next few days.

Lightweight

So, Eva has been losing weight slowly the last several weeks, but it now adds up to about 15-20% of her body-weight (7.1 kg a month ago; 5.6kg now). We did a well visit/shots a couple of weeks ago and the doctor said its just teeth (looked in her throat, did check up). Two weeks ago we tried another hospital, and this one said teeth also and gave an antihistamine, which we've since discovered is common here and is meant to increase appetite (we didn't use it then, but will probably start tomorrow). Early this week, Emily went to our pediatrician. She asked for a blood test. He said he doesn't like to poke babies unless it's necessary. He said her teeth are erupting, although we can't feel them coming in yet.

It probably is her teeth. She doesn't like to eat. She moves her mouth around. She makes a gagging noise a little easier. While Eli has had both bottom teeth for a while, hers still haven't come in. Anyway, today I called a friend on campus and she helped us find a local hospital with pediatric hours this morning. Emily and the friend on campus went to a third hospital. The doctor there said he was a bit more worried and they did a full consultation. They did ultrasound of head and stomach, to make sure there were no obstructions. They took blood. We don't know when we'll get the results. The doc said her fontanels have already closed up, which is definitely on the early side, but not uncommon. Friends have suggested it could be something like anemia or thyroid. Anyway, it's all a little scary. I'm hoping we'll get results on Monday or Tuesday. Our nanny also has a friend who took a kid to the main national hospital and has a name for their early birth/weight issues doctor, so we could go there on Wednesday if necessary.

Anyway... Just a bit perplexing. To clarify, Eva is still nursing and eats at least a little every day. Sam also lost weight as he grew, but we don't remember it being so dramatic. We're hoping that this is just the result of the contrast between the two babies, where Eli is in constant motion and can really throw his weight around. Eva does smile and make eye contact, but she seems less energetic. Hopefully we'll at least cross some things off soon and then can reevaluate.