Update

Part of me wants to delete the last post, but I know I shouldn't. We all have moments of weakness, and if nothing else I hope this blog is at least real.

The girls saw the rheumatologist again on Friday and there was good news and bad news. Mostly bad news. The good news is that sarcoidosis is off the table - it's just Crohn's. The bad news is that both Harper and Nora have arthritis and it's getting progressively worse. We will start them on maloxicam this week (anti-inflammatory) and see how things go. They both see the rheumatologist again in a month, and if things haven't gotten significantly better they will need to do a dose of prednisone and start on methotrexate. The good thing about methotrexate is that in addition to treating arthritis, it is also used for Crohn's and colitis. The bad things are that it is a weekly injection that I have to do (Harper is terrified of needles), and it's chemo. Yeah, I realize it is a tiny, minuscule fraction of the dose that they would use for cancer, but it's still chemo. But if it will do double duty and take the tummy and joint pain away from both of my girls, I will love it. As made obvious in my last post, I am tired of them constantly being in pain.

As for the Crohn's part of the Crohn's (as opposed to the arthritis part of the Crohn's), the girls' GI doc spoke with their rheumatologist on Friday and he will get back to me this week about where we go from here. We had previously decided to re-scope both girls at their one year mark, and that has come for both of them. With the disease obviously progressing, I'm sure we will have to go ahead with that plan.

The great news is that both girls' CBC is still normal - neither have been anemic for a few months now! Yay!

Selfishness

This post is going to seem really selfish. I'm just warning you in advance. Sometimes you just have to get it off your chest and then move on.

First off, no matter what I have to deal with while taking care of my two kids with Crohn's, it's no where near as bad as having Crohn's. I get that. But can I just say that I am so tired of it? There are lots of things I'm really grateful for - good doctors, decent insurance, medicine that (sometimes) takes my babies' pain away, etc. But today I'm going to vent about the crap because it's building up and I gotta dump it somewhere.

It's been a little over a year since Nora was diagnosed and in that time I have racked up thousands upon thousands of dollars in medical bills. Pediatric colonoscopies are really expensive. Even if Nora let me sleep through the night I'm pretty sure I wouldn't be able to as I'd be too busy thinking of all the money that is going to the damn anaesthesiologist instead of a down payment for a house that will actually fit all my kids. I am tired of getting sent to collections for bills that I've already paid, I'm tired of spending my free time hauling my kids to the hospital for blood draws instead of taking them to the park. I'm tired of being so tired that I actually considered buying Depends so I don't have to get up to go to the bathroom. But most of all, I'm tired of watching my kids go through the crap they have to go to. I'm tired of hearing them scream in pain and I'm tired of not being able to do anything about it.

Ok, thanks for letting me vent - back to being a mom.

Magical Uterus and a Crohn's Update.

As I mentioned in my "Sisters" post in May, I am one of three sisters, the oldest born Oct. 3, the next (me) born Feb. 13, and the youngest born Sept. 26. My oldest daughter was born Sept. 26, my next born Feb. 13, and just 4 weeks ago my youngest little girl was born on my oldest sister's birthday, Oct. 3. To be honest I really didn't think it would happen - it's just too crazy! But apparently I have a magical uterus.

In late July at 30 weeks pregnant I went into early labor. I started dilating and I was on medication to stop the contractions. By 36 weeks I had made 3 trips to the hospital, gotten 3 shots of tributiline and had dilated to 5cm and it was only the beginning of September. There was just no way I was going to make it 4 more weeks! But somehow, miraculously (and thankfully), I made it to just one day before my due date and Rosalynd Eliza was born healthy and happy. Granted the 10 weeks of labor and bed rest were anything but fun, but it was so worth it for her to stay in there and grow as much as she could.

Harper and Nora absolutely adore their little sister and it is the best thing in the world to see them kiss and cuddle her. They are both very fascinated with me nursing Rosie and Harper keeps asking me if there are hands and spoons inside

me that make the milk.

And speaking of Harper and Nora, they are doing pretty well. Their GI is still having doubts about the Crohn's diagnosis and had them see a rheumatologist at Children's to test for Blau Syndrome (familial sarcoidosis). So far it doesn't look like that's what they have, although the doc did confirm that Harper has arthritis in her knees and ankles (which does happen with Crohn's). She will be starting on a non-steroidal anti-inflammatory in addition to the anti-inflammatory that she takes for her GI tract. Nora has also started complaining about pain in her knees so we'll see what happens with that. The really great news is that both girls are no longer anemic, both inflammatory markers are normal and both are gaining weight (though Nora STILL isn't on the growth chart). They follow up with the rheumatologist and GI next month, and they see an opthamologist (you can get granulomas in your eyes with sarcoidosis) in a few weeks. Over all I think things look pretty good. We are just hoping and praying that Rosie won't have to go through what these girls have. Even if she does end up having Crohn's, hopefully we will catch it quickly knowing what we now know. She was extremely fussy for about a week and her pediatrician prescribed her some meds for acid reflux - I had a horrible flashback to Nora's one month check up when the doc prescribed the same stuff (and was having the same symptoms), but Rosie is eating fine and gaining weight - both things Nora did NOT do. I just have to keep reminding myself that every time she cries it doesn't necessarily mean she has Crohn's....she also gets poopy diapers and other normal baby stuff. I'm just massively paranoid.

Things You Forget

For some reason that I can only imagine has something to do with sustaining our human race, you forget about how much pregnancy really sucks. Yes you remember getting huge, you remember a vague sense of uncomfortableness, some sleepless nights, etc., but you do NOT remember the specifics, all of the many, many little "joys" of pre-natal-hood.

For example, how to put on shoes. For many, a simple task. For those past their 5th month (especially on the 3rd pregnancy), not so much. This morning I went to put my shoes on and I apparently grew quite significantly overnight because it was rather difficult. I had to sit there for a minute and try to remember how I did it (only 15 months ago, mind you) with my other pregnancies. I suppose that is the one good thing about being preggers during the summer - flip flops are easy to put on no matter how enormous I get. Not that the weather has been anywhere near dry or warm enough for flip flops here in the Seattle area, but I'm assuming that at some point during the next 4 months it will be. Anyway, you kind of have to bend your legs like you're sitting cross-legged and shove your shoes on that way. I also recall making Tom zip up my boots when I was pregnant with Nora - although how I actually got them on in order for him to zip them is another matter, and one that I have completely blocked out.

There are also the Braxton Hicks contractions. Apparently these suckers start earlier and earlier with each pregnancy because I've been going strong with these bad boys since week 13. Yes I remember having them with Harper and Nora, but I do not remember them being so freaking uncomfortable. I feel like I need to have a little sit-down with my uterus: "Excuse me - I appreciate the fact that you are carrying my baby and that you are preparing for an intense day of labor some 4 odd months down the road, but really - I have better things to do then practice labor. Also, you've done this twice before, you know the routine. Give me a break."

The arm fat. I ask you, is it really necessary to gain 5lbs in each arm to deliver a baby?? At least when I was pregnant with Nora I could hide them under long-sleeved shirts and sweaters since it was winter, but unless I want to drown in my own sweat and/or die of heat stroke, that isn't going to happen this summer. I will have to show off the lovely arm jiggle every time I try to wave my kids over, or fix my hair, or you know...move...at all.

The stronger-than-any-other-force-known-to-man-cravings. It's certainly not something I am proud to admit, but when I was pregnant with Harper I couldn't drive by a McDonald's without getting a quarter pounder with cheese, and I had the thighs to prove it. This time I think I'm doing slightly better since I'm craving more fruit and veggies, but holy crap, I feel like I will actually die if I don't eat it right now. I was craving a good taco salad at work one day, but the closest good one is over in Westlake and I had a ton of work to do. I knew it wasn't going to be possible to get away and I actually started crying right there in my office. Then I felt like such an idiot for crying about food that I started crying even harder.

Which brings me to my next point - the completely out of control emotions. Not only have I cried about taco salad, but there was also the dead squirrel at the train station, the time I couldn't put my regular pants on, the House season finale (and, ok, every other House episode). And of course the things that would make a normal non-hormonal person emotional that pretty much turned me into a total lunatic - the death of a friend's husband, my sister's wedding, my friends' sick baby boy, my own daughters' fight with Crohn's. Really it just seems like crying is the response to pretty much anything. Sad? Cry. Happy? Cry. Angry? Cry while punching pillow.

And lastly, because I am being reminded this very second as I type, the weird positions the baby gets into while in utero. I'm remembering that Nora used to like one side more then the other, and it seems as though this baby is also starting that trend. Right now she is squeezed into my right side, so there is a huge, hard lump sticking out on the right side of my tummy, and just mush on the left side. It looks as insane as it sounds, and it is not comfortable in the least, but it is kind of funny to imagine the baby trying to get comfortable. "If I just curl my legs up like this....and then put my head over here....yeah...that's good...that'll do for the next month or so."

I'm sure I will be reminded of many more wonders as the months progress!

Sisters

I have two sisters, one 19 months younger then me, and one 4.5 years older then me. Growing up, 4.5 years was a pretty big age difference, but we still played together quite a bit. Granted it was mostly a slave game that Heather made up to get Erica and I to clean her room and bring her food (she sat in bed, speaking into a hollow toy tree to make her voice echo, calling us J8 and E6, our first initials and our age), but I think we still all had fun. And you have to admit, Heather was pretty creative.

Some of my most fun memories are of a summer that Heather and Ammon (at the time her boyfriend, now her husband) came home and lived with us while on break from BYU. We had a Super Nintendo that our dad had hidden because it had caused too many fights, but we easily found it and snuck it out every night to play it together. We had devised a complicated plan of action in case we heard anyone coming. Everyone had a job. Heather: grab all the controllers and run them to the console, hand console off to Erica. Erica: run console to the bedroom off the family and hand it off to Jennette. Jennette: hide console in cupboard in bedroom. Ammon: scream.

One night that summer we dressed in jammer-jams (button down PJ's), Ammon's complete with a necktie, and went to the drive-in theater. I have pictures of this night somewhere in my huge bin of old pictures, and someday I will find them and post them. This night is one of my favorite nights of my life, and probably the hardest I've ever laughed. I honestly don't even remember what was so funny (beyond Ammon's necktie), although I do know someone sprayed orange juice out of their nose and all over my mom's van. Someone tried to get out of cleaning it up, but E15 and J17 were not having it.

Now that we are all adults we still have wonderful times together. The three of us got to spend a week together in Costa Rica this past January, a week I will always treasure. Erica and I are so much alike in so many ways, it is almost creepy. So many times we say the same obscure thing at the same time with the same inflection and then laugh the same exact laugh. Heather is so caring and so protective of her little sisters. Kind of hard to believe now, but Tom and I actually had a hard time conceiving before we had Harper. I remember taking negative pregnancy test after negative pregnancy test, it was so depressing. One early Saturday morning I thought for sure I would see a little pink plus sign, but it wasn't so, and I called Heather crying. She cried with me, then told me to go hug my husband, the best advice I could get. I feel so connected to both my sisters, sometimes I sit at home and I swear I know what they are feeling.

Today I found out I am having my third little girl. Harper, born on Erica's birthday, Nora, born on my birthday, and our new baby, due on Heather's birthday. After having Nora I had a hard time dealing with the fact that I would never be able to give 100% of my time to each child now that I had more then one, but someone reminded me that I was giving them a gift they could never have on their own - a sister. So thank you mom, for giving me my two wonderful sisters (and, of course, my brother, whom I love equally but who isn't included in this post - but will be on my next pregnancy when I find out I'm having a boy due on his bday), and thank you to my sisters for being you.

Crappy Mother's Day To You, Too

It seems my Mother's Days are destined to be filled with crap. Not the metaphorical crap, as in "I had a crappy day," kind of way, but the literal, "There is crap all over me and my house and I have to clean it up and possibly go puke" kind of way.



Last year there was the Harper diarrhea, the dog eating the diarrhea diapers and spreading them throughout the house, then the dog throwing up the diarrhea diapers, again spreading it throughout the house (AFTER I had cleaned, sanitized and, when possible, bleached everything in my house). It seemed like there was a lot of poo the first time around when it actually came out of Harper, but it exponentially multiplied by the third time around.



This year, the day before Mother's Day, I cleaned up every type of bodily fluid imaginable. Over, and over, and over again. And each time I naively thought to myself (and once even said out loud, to no on in particular), "This HAS to be the last time for today...."



It started out as a really great day. Friday night Harper had her first sleepover at her cuzzies' house, so Nora and I had a leisurely morning, a yummy breakfast, and a fun Target shopping trip. When I went to my brother's to pick up Harper, Nora immediately went for what my mother calls the "Bubble Car." It's one of those plastic cars with the big bubbly looking top that you use your feet to make go, Fred Flinstone style. It was impossible to get her out of that thing, so when she had a dirty diaper I had to drag her out and forcefully hold her down while I took it off and wiped. In the 4 seconds it took me to let go of her and reach into my diaper bag for a clean diaper, she was back in the bubble car, sans diaper. I walked over, picked her up, laid her on the floor to put her new diaper on, and wondered what all that brown stuff all over the carpet was. It kind of looked like poop. Oh. It was poop. Nora has pooped in the bubble car, walked in it, got it all over me, and all over the carpet. I felt terrible, but of course Heather was a sweetheart and ran over to help me clean up.



After everything was clean I decided it was probably time to go, so I packed everyone up and headed over to my parents for an uneventful (read: no poop) afternoon, then headed home for dinner. This is when the real fun started. Harper fell asleep on the way home, and when we got home and I picked her up out of her car seat she peed all over me (still asleep). She's been in panties for over a month, but I guess the urge was too strong while she was sleeping. It woke her up, or maybe my screaming did, I got her in the house, washed up and clean, dry clothes on.

About 20 minutes after we got home I heard this weird noise coming from the hallway, so I went to investigate. For those of you who don't know our dog Scout, he is a little different. We love him, but high maintenance and high energy doesn't even begin to describe this dog. Like most Viszlas he has a touchy stomach, so Tom taught him to puke in the toilet when he was only a few months old. He does it on a regular basis, but he does not know how to lift the lid, and since I have been keeping the lid closed so Nora doesn't drown herself (yes, she would), or put any more of Harper's Barbies or clothes down the toilet (yes, she has), he has puked on the bathroom floor next to the toilet a few times. Not a big deal, but he is a big dog so it takes quite a few towels to clean it.

But I digress. I'm in the hall investigating the noise when I see Scout come out of the bathroom and puke on the carpet in the hall. The noise was him retching the first time on the bathroom floor. The smell is so overwhelming I run back into the living room to avoid puking on his puke, but I know it will be impossible to keep Nora away from it for more then 30 seconds, and the smell is starting to make its way throughout the rest of our house, so I take a few deep breaths, a drawer-full of towels, and head back into the hall. As soon as I get there I change my mind again and run back into the living room. Seriously, it is bad. Nora is fighting me like crazy trying to get back there, so I find some Febreeze and start spraying like mad and holding my breath while I head back again (Nora on my heels). When I get down on my knees to start the cleaning process, I realize he has thrown up POOP. Yes, you read that right. It's poop puke. He had just played outside for a while before I brought the girls in from the car, so I'm assuming it's some random dog's poop that he found, ate, then ate what looked to be about 2 lbs of grass to get it back up. Apparently the poop alone wasn't enough to make him puke.

I am really trying hard not to puke, but I am pregnant and quite sensitive to smells, so by the time I got to the portion of the puke on the carpet, I threw up on the throw up, which then made me throw up some more. So now I am sitting in my hallway, crying, surrounded by puke and trying to keep Nora away with my foot, and I hear in the living room, "Mommy, I peed." So I tell her to not move, get the poop puke cleaned up, then head out to get Harper cleaned up for the second time in the last hour.

About a half hour later we are eating dinner and I think to myself "Only an hour and a half until the girls go to bed, at least I won't be cleaning up anymore poop, pee or puke," when Harper gets a somewhat shocked look on her face and says, "Mommy, I peed." Again. At least this time Nora is strapped into her booster seat so I'm not trying to keep her away from a pile of puke or a puddle of pee, so I run Harper to the shower, rinse her off again, think there is NO WAY she will pee again in the next hour so I put her in another pair of panties, PJ's, and back to finish dinner. We read stories before bed and head into the bathroom to brush teeth. Harper likes to stand on the toilet seat and lean over the counter, and while standing on the toilet, she peed her pants again. Couldn't she have at least just lifted up the seat???

After the girls were both clean, dry and in bed I decided to organize my closet, so Tom came home to his wife sitting in the closet, surrounded by a huge pile of shopping bags (I save them for a few months then purge), shoes and sweaters everywhere, crying and trying not to think of the poop puke lest I throw up again.

Being a mom is so hard. Not just because you have to constantly clean up every type of bodily fluid imaginable, although that does really suck. It is mentally and physically exhausting and there is never any down time. Even if the kids are asleep or at preschool, you are always "on-call", poised and ready to do whatever is necessary to take care of your children. And yes, I would do anything.

The next day at church, Harper ran up to sing Mother's Day songs with the other Primary children, and louder then any of the other kids I could hear Harper, looking right at me, sing (yell) "MOTHER, I LUB YOU! MOTHER, I DO!", while I'm holding Nora who is laughing, pointing at her sister and waving. I'd clean up poop puke again a million times over, just for that moment.

Updates and News

Nora - continuing to do great and up to 17lbs. She is a wonderful eater, eating (or at least trying) pretty much anything we give her. Hopefully someday she will be able to sit in a forward facing car seat, haha. She had her first birthday on Feb. 13th, we went to the Children's Museum in Factoria and she absolutely loved it. She is a little copy cat, watching other kids to see what they do, then copying as best she can. She says a few words, mostly "kitty" and "dog", but she also just started saying "all done".

Harper - her colonoscopy in January showed ulcers and inflammation throughout her colon, but so far it doesn't look like it's affecting her small intestine. In other circumstances they would have diagnosed her with colitis, but because of Nora's diagnosis they compared the two girls' tissue slides and the inflammation is almost identical. Both girls now have a diagnosis of Crohn's, although it is so rare and shocking that their doctor (and the doc down in San Francisco) is still somewhat questioning it. But all other blood work and tests seem to point in the same direction. Harper hasn't responded as well to the medication, but I've seen some improvement just this last week, so I'm hopeful.

Last month I got a much needed break and spent a week in Costa Rica with my two sisters. It was beautiful and relaxing and so much fun! The day after I got home I got the shock of my life when I found out I was pregnant! I was shocked and terrified and worried all at the same time. It took a few days, but soon I couldn't help but be excited.

I've had a couple ultra sounds and all looks well. I'm about 10 weeks along and due Oct. 4th - although if I continue with my current pattern, he/she will be born on my sister's birthday, Oct. 3rd. Because I thought I was a little farther along then what I'm actually measuring, it seems like it's going by super slow, which really sucks. The "morning" sickness is really getting old, but I'm hoping it will end at 14 weeks like it did with the last two. I had been working out a lot before I got pregnant, so I've been trying to keep it up (in between the puke), but last night as I was doing sit ups I could feel where my ab muscles are separating (to let my uterus expand) and it was really sick. I got really freaked out and had to stop, haha. Which is weird because it hasn't bothered me with the last two pregnancies, in fact I used to trick Tom into feeling it to freak him out, hahaha.

It's early yet, but I'm predicting it's a boy. With my other two I craved meat, especially cheeseburgers. With Harper I couldn't drive by a McDonald's without getting a quarter pounder and with Nora I was really lucky to be in CA twice and get several In N Out's. With both of them I thought it was a boy because I figured I was eating like a boy. With this one the very thought of a burger literally makes me gag* (except for In N Out, which I will always love no matter what). In fact, any kind of meat makes me sick, I just want veggies. So since I'm eating like a girl, I guess that means it's a boy? Nine more weeks to know for sure.

And along with my exciting news my sister has some of her own. She is getting married! We had planned on going down in May for her grad school graduation, so instead we are now going down for a wedding. She is so happy and in love, I'm ecstatic for her. The best part is that his name is Eric - Eric & Erica, hahaha.

*Seriously, just typing this paragraph was a huge risk. There was lots of dry heaving involved.

Well it seems I am only updating on Crohn's disease as of late, and unfortunately this post isn't gonna be any different.

Good News:
Nora is doing great!! She has gained 2 lbs and now weighs over 15lbs. Still not on the charts, but getting closer. She has started walking a tiny bit, taking a few steps here and there and seems to love her new skill. Dr. Heiman down in San Francisco confirmed the Crohn's diagnosis, and we learned last month that Nora is the only baby in Washington with the disease. There is one other in CA (the other one that Dr. Pickens helped diagnose), but that's all that we know of on the west coast. I wasn't kidding when I said it was rare.

Not So Good News:
Harper went in for her preliminary blood work and it looks worse then Nora's did. She is anemic and her inflammatory markers are very high. She goes in on Wednesday for a colonoscopy and endoscopy - I know it seems a little extreme to do just based on some iffy blood work, but after what we went through with Nora we aren't messing around. If Harper has Crohn's we need to know now so we can start on treatment right away.

I was able to connect with a woman who used to be in the Orting ward who has a young son (13 now, 7 at diagnosis) with Crohn's, and it was so great to talk to her. She was reassuring, encouraging, non-judgmental (yes, I have been judged for putting my daughter on steroids - people are stupid), and all around awesome. She has always been someone I've looked up to and it was so great to reconnect with her and get some advice.

I promise I will get a non-Crohn's post in here soon. Christmas pics and more are forthcoming.