Wednesday, May 31, 2006

Down and down the platelets go, where they'll stop no one knows

Round three at the blood clinic was yesterday and yes, Eden enjoyed it as much as all the others. It seems inevitable that every time Eden seems to have finally gotten over the previous hospital visit (no more nightmares, touchy feet, fear of scrubs [okay, so I made that one up]) we have to take her back in again. Wait, it is inevitable; she has weekly appointments. No wonder it seems like this stuff is never done.

So after all the screaming, the bleeding, the farting (usually accidental as a result of all the screaming, unless it was me--those are usually planned well in advance), and the crying, what was the score from the judges?


177,000 (or, as the phlebotomists say in their crazy lingo, the one-seven-seven) is still in the normal range, but only just--normal is 150,000 to 400,000 (the one-five-oh to the four-oh-oh yeah!). Yeah, I know the lab tech who gave us the score said it was a great score and perfectly normal, but she's not the fretting parent of a baby with blood issues, is she? Well, she could be for all I know, but the point is that Eden's been knocking off about 300,000 platelets a week for the last couple of weeks, and you've got to wonder where it's going to STOP.

We're holding our breath for 176,000.

And since we still don't have any photos of the screaming banshee post-needle prick, here's a couple of her showing off how dorky and consumerist her parents are. You'd think we'd be embarassed to post these, but no. We have no shame.

Friday, May 26, 2006

Picture Perfect

So Sarah roped our good friend and world-class photographer, Angela, into taking some photos of Eden for her 3-month birthday--and they turned out not too shabby, not too shabby indeed. The following are but three of several dozen that Angela took; she's still putting the final spit and polish on the others while these serve as a little appetizer, to mix metaphors.

Thursday, May 25, 2006

Drumroll for the roll, please

Saturday was the day we've all been waiting for: the first roll. Not the first fat roll (she's had several of those for quite some time now), but the first roll, from stomach to back. We were actually lucky enough to catch it with a string of pics:

Okay, so that was totally staged.

She really did roll over, though, and not just once but three times in a matter of five minutes or so. And then the fun was over--she hasn't done the flip-flop since. It's like she was saying, look, I could do it if I chose to do so. I just choose not to most of the time. But to satisfy your parental yearnings, here--here's three of 'em. Ya happy now?

Now, back to my regularly scheduled naptime...

Tuesday, May 23, 2006

Eden shorts (news updates, not clothes)

I realize it's been a week (over a week, now) since the last post, but in our defense we are very lazy. We have no excuses; it's not like nothing happened over the last week.

Wait, nothing happened over the last week; scratch the previous sentence.

Alright, that's not quite true--something must have happened, but it's late and I'm tired and I don't really want to go digging in my short-term memory right now, so I'm making this a short post.

Relatively short.

Actually, I can probably stretch it out a bit and make it look like I wrote more if I make every sentence a paragraph.

So, in short: Eden had her second blood clinic visit yesterday and scored a 430 (,000), which is still above the normal range, which makes us very happy.

She also decided to celebrate her previous high score by...developing separation anxiety?

Eden had apparently decided that life was not worth living if Momma was not holding her every moment of every day. If I held her, she screamed (shoot, there goes my one-sentence-per-paragraph structure). If Molly held her, she screamed, though not as much as with me--it must be something to do with breasts. It's frankly worn poor Sarah down, and although Eden is slowly calming down and getting back to normal she still has her moments. And they're not pretty moments.

I wish we had some pictures of her scream face; it's a sight to behold, much like her pooping face, although not for the same reasons.

And that's the news in short. More news, pics, and whatnot to come later, I promise.

Oh, and for those of you (the two of you) that leave comments on the posts, you may have noticed our blog has received its first spam; I'd feel honored if I wasn't so mad. Anonymous, you sneaky devil, I'll track you down someday. In light of our best frend Anonymous' insightful postings, watch for comment moderation to return if he swings back through (which I seriously doubt--spambots rarely cross the same stretch of Interweb twice). And watch for possible site updates when I get my lazy self around to it.

Monday, May 15, 2006

Healthy Bumbo Baby!

First of all let me apoligize to you all for my writing skills, I know this blog entry won't be near as enjoyable to read as Mike's, but hopefully it'll get the point across and Eden's pictures will make up for the rest.

Eden had to have more blood drawn today to monitor her platlet levels. We are very proud of her, as she didn't scream with fear when we walked into the hospital. This test was very quick, a prick of the finger and a few squeezes (and screams) and it was over. We then had to wait for an hour or so to get the results... 760,000 (up from 80,000 last Thursday)! We are all very excited. They also said that her white cell count is in the normal range at last. We'll hang in there for another week when we check the levels again.

Eden also had her weight checked, and we are happy to report that the hospital stay didn't slow her down- she's up to 16 lbs 7 oz. She demonstrated her weight gain to us when we bought her a new chair (the Bumbo) and found that we have to push her legs in to make them fit; she makes us proud!

Saturday, May 13, 2006

The Great ITP Adventure, Part Deux

...So where was I? Right, the bone marrow biopsy on Tuesday. Luckily, the doctor and nurses allowed us to be in the room when Eden had the biopsy done. Lucky in a way--it was ten times easier to watch a nurse punch a monstrously large needle into Eden's hip than it was to try to comfort her as she lay screaming before the sedatives kicked in. Her eyes were two power drills of parental guilt; you could see the Why? written in big bold letters in her eyes before she crashed out. Oh, did I mention why she was crying so much, apart from the obvious? Because she had to go for SEVEN HOURS without any sustenance prior to the biopsy. I can't even go that long between meals, and I'm not on the two hour normal feeding schedule Eden has been on since birth (although I'm close, which probably explains a lot of the not-so-svelte figure I cut these days).

The biopsy came back negative for cancer.

The results were almost an afterthought. Sarah and I were so focused on getting Eden through the seven milk-free hours and, once it finally rolled around, getting through the biopsy
that we almost forgot the whole reason for the agony in the first place--to try to find the answer to Eden's blood problems. The lack of an answer from the biopsy was an answer itself; no cancer narrowed the possibilities to basically three options: ITP, a more simple viral infection, or internal hemangiomas.

To try to figure out which it was, Eden had to get a transfusion of platelets. The doctors would then test her blood shortly after the transfusion and again the next morning (Wednesday), and compare the two. If her platelets the next morning were as high or higher than they were right after the transfusion, chances are she had just had a virus at some point that made her bone marrow goofy enough to stop making blood properly for a bit, and her body just needed some help to catch up with itself. If her platelets were down or not as high as they should be, however, then something was actively eating the platelets.

So she got the transfusion and her platelet count jumped up a bit, but a couple hours later we noticed blood in her diaper. We called in the nurse, who called in the nighttime attending doctor, who decided Eden needed another round of platelets. After the second transfusion her platelets should have been up around a million (which is bad if you're grown up but is apparently okay if you're a baby--yet another benefit we lose when we get old), so we had high hopes for Wednesday morning's blood test.

Her platelets the next morning were at 43, 000. Which isn't very close to a million, for those of you who struggle with math. This meant Something Bad was eating her platelets like candy. This also ruled out the basic viral infection, and left two options: ITP and internal hemangiomas.

Hemangiomas are something you're just going to have to google for yourself, because I can't really explain them and trying to would take too long, be full of errors, and sound generally ugly. You might actually come out stupider after my explanation; suffice to say you wouldn't want to decorate your house with them. The treatment for internal hemangiomas is apparently the same as for ITP, except that in extreme cases chemotherapy has to poke its nose in. We were holding our collective breath for ITP.

The doctor scheduled a set of ultrasounds for Wednesday to search Eden's torso and head for any hemangiomas, which gave me a funny feeling; eight months ago we were using ultrasound to look at her outsides and now we were using it to see her insides as well. And, in case the milkless Tuesday morning wasn't fun enough, we had to deprive Eden of nourishment for four hours prior to the ultrasounds, to be able to get clear pictures of her internal organs. Eden got through those four hours like she got through the seven hungry hours the previous day--by sleeping almost non-stop. I'm convinced it was a conscious act of will on her part, because there was really no other explanation for it; she can't make it at home past 2.5 hours without screaming.

The ultrasounds didn't show any hemangiomas (although they did turn up an enlarged right kidney--this is a bonus her body decided to throw in, as the doctor believes it is unrelated to her ITP. Probably a kidney infection, or possibly some-body-part-A not connecting properly with some-other-body-part-B, which could cause waste from her bladder to backflush into her kidney. Or something. The doctor didn't spend much time on the kidney ailment, other than mentioning that we can't do the normal test for this problem--which involves a catheter, a whole lot of dye, and an x-ray to see if any dye meanders from bladder to kidney--because her platelets and white cells are too low. So that'll be a fun game for later.), so the only option left was ITP.

ITP, in doctorspeak, stands for I don't know what The Problem is but I know bad things are happening. Just kidding! That's just what it means to me. It actually stands for Ideopathic Thrombocytopenic Purpura, and is usually caused by a virus or vaccination tricking the blood's white blood cells into thinking the platelets are the bad guys. The white cells give the platelets little dunce caps, and the spleen then throws all the dunces out as they filter through.

Hmm, let me think about this. It seems like Eden got her first batch of vaccines just a few weeks ago...

Anyway, the treatment for ITP is a transfusion of immunoglobulins, which various doctors and nurses called immunoglobulins, gamma-globulins, and IVIG. IVIG is easier to type and uses capital letters, so we'll call it that. Eden got the IVIG (so much fun to type--it looks like ancient Roman) Wednesday night into Thursday morning, and by that morning's blood test, she was up to 80,000 platelets, which was only half of the normal minimum but was still a weekly record for her. 80,000 platelets was good; 80,000 platelets meant the IVIG was working like it should. 80,000 platelets meant we could take her home, which we did later that afternoon, once we had talked to the doctor.

And now we're home. Eden's not quite out of the woods yet; we have to take her into the blood clinic every Monday for the next couple of months to check her blood levels. The IVIG only lasts four to six weeks, so we have to watch for her platelets to start declining again; if that happens, it's back to the hospital for another transfusion. And her white blood cells are still much lower than they should be and no one's really sure why. And she still has an enlarged kidney that had to take a number after the ITP but that we'll still have to handle at some point. All of that sounds worse than it is, though; we're home and Eden is on her way to being a normal healthy baby.

There are, of course, so many things that happened that I forgot to mention, like having to give Eden sugar water during the ultrasounds to keep her relatively still (thus starting the inevitable decline into sugar addiction that the rest of the family suffers from), or Molly and Chach coming up every day and taking care of us (and Molly staying all day every day, giving us the physical and emotional supprt we so desperately needed), or all the calls and thoughts and prayers we received from everyone over the week, or the million other little things we swore would be burned in our memories forever and have already started to forget. Maybe they'll be related down the road, as the situation arises or as they come to me.

All of that to say that it was a long week, but Eden came through it like a champ and will hopefully be all better in just a few more weeks. And there's nothing like a stint in the hospital to build up the over-protective-parent muscles.

And if I haven't said it yet, thank you. If you're reading this, then you offered up a prayer for Eden and, in the end, that's what got her (and us) through this and will ultimately get her better. So...thanks. And keep em coming.

Friday, May 12, 2006

I'll take one of the ITP, please.


It's been a busy, busy, stressful, hair-pulling, tear-shedding and ultimately joyful week. For those of you who have missed the email and MySpace updates Sarah and Molly have put out, let me explain:

No, there is too much. Let me sum up:

Monday morning, Sarah noticed a couple of purple-ish dots on Eden's face. During bath time a little later, Sarah saw that these little purple dots were scattered randomly all over her body, like someone had taken a fine-tip purple Sharpie to her. We were curious but not worried at this point--who worries about purple dots, really? But we were curious enough to look it up on the Internets, where we came across enough websites that mentioned these kind of dots in conjunction with call your pediatrician immediately that we decided to follow their advice.

We went in that afternoon and, after the usual check-up and related health questions (are you, your friends, your family, your dog, your neighbor down the street, this guy in Brooklyn you may or may not know, sick at this time or have been sick in the last week, month, five years, entire lifetime, last century?) they drew a little bit of Eden's blood to test. Boy, was that fun. The test results came back with a bombshell: Eden's platelet count was down. Way down. The normal count is 150,000-400,000 platelets per whatever-they-measure, and hers was at 16,000. This was officially bad, because platelets that low meant it would be hard for her to stop bleeding once she got started. The pediatrician tried to play it off all cool by saying, "You can take minute to go home and pack your bags, but you need to be at Children's Hospital within the hour," but we knew he was worried, and that made us worried.

We got checked into Children's a bit later (by the way--Best. Hospital. Ever.) and it wasn't long until the nurses came to check her blood again, get her hooked into an IV, and all sorts of other things that made Eden scream and cry (which made us do a little of the same). The blood test that night came back the same as the pediatrician's, so we settled in for the night and waited for the next morning's blood test. If the morning's blood test came back low as well, the doctor was probably going to need to do a bone marrow biopsy to see if something else was going on, which wasn't exactly reassuring to us and made for a rather long, sleepless night.

Tuesday morning's test came back with not only Eden's platelet count down, but also her white and red blood cell counts down as well--her body was basically not making blood, which made the biopsy that much more urgent. Leukemia--everyone was afraid to say it out loud the night before, but now the word was starting to flap menacingly about the room, and we were getting pretty nervous. The hematologist laid it out like this: Eden probably has something called ITP, but the low platelet count could be caused by internal hemangiomas, and the low white and red cell counts meant that Leukemia or some sort of tumor are definitely on the table. Not exactly news to warm a parent's heart.

...More to follow with the next post. (I know that is a whopper of a cliff-hanger and I know his post is barely coherent and I know there are no photos of the action, but we promised to put something on the blog last night, so we're obviously already late. Besides, Mikey Mosher's getting married this evening and I get to do groomsman stuff in the wedding, so I'm off. More, I promise, once I get back.)

[UPDATE: Pictures added on 5.14.06, because everything's better with pictures.--ed.]

Friday, May 05, 2006

bbq like a rock star

Eden had a whole weekend-plus full of firsts, enough to put her in her first way-too-much-excitement-for-a-hipster-baby recovery period. She's been in crash mode ever since her Gran left--if she's not eating or sleeping, it's cranky-pants time. And nobody likes cranky-pants time.

At any rate, you may not have asked for it, but I promised it anyway: Eden's first barbeque pics. She had a blast watching everyone around scarf down sausages and dogs (well, only Ben Jones felt that italian sausages just wouldn't service his needs, so he brought the hot dogs for himself. Talk about hoity-toity.) out on Molly and Chach's back porch. I think she really was just waiting for our friend Lindsey to get off the Playstation 2 so she could get a turn at Katamari Damacy; I saw her little thumbs twitching to that crazy music.

Chillin' with Gran.

Friends and family. Or gangsters, maybe. I forget.

The infamous Mr. Benjamin Jones.

...and the party's over.

Monday, May 01, 2006

Too late for the zoo? Try the park instead.

We had a small review of Noah's Flood on Saturday with inch upon inch of rain over the course of the day. Our street turned into a nice little river; water flowed up to mid-calf at its highest point (which, of course, I chose to be the ideal time to cross from Molly and Chach's to our house) and our friends' yard at the bottom of the hill turned into the receiving reservoir. The upside to all the rain is that we're now only something like 23 feet behind on our annual preciptation (actually, I think we're just about caught up to where we're supposed to be for the first time in over a year). And, of course, the storm left all sorts of fallen branches, piles of leaves, and random bits of flotsam and jetsam around the pond in the park by our house, so what better time to take Eden to her first park visit?

Okay, that's not exactly how it happened. We had actually planned this to be Eden's First Trip To The Zoo, but, go-getters that we are, we didn't get out of the house until 4:00, only to arrive at the zoo and be greeted by a mass rush of people flooding out. Lions on the loose? No, just the zoo closing at it's (unknown to us) normal time of 4:30.

So we went to the park instead to walk around and look at all the blown-down branches and floating bits of trash. I make it sound bad, but it was actually a very beautiful day and very scenic at the park (apart from the trash), with lots of kids playing and men with beer bellies fishing. We had a great time.

One of these days, though, we really will leave early enough to show Eden the real-life versions of the monkeys that decorate her nursery.