oh my, oh my, oh DINOSAURS

Jordan is in love with dinosaurs, again. At first, it was just the Oh My, Oh My, Oh Dinosaurs book and it was a favorite for a long time. Slowly it faded into just another book and she couldn't care less about dinosaurs. Then. Then, she heard We Are the Dinosaurs by the Laurie Berkner Band. It's all about dinosaurs now. It's all very cute, too.

Norah is holding the course. We go to the nephrologist tomorrow and I'd be lying if I said I wasn't nervous. I have no idea what the appointment is going to be like. I asked today, and no one seemed to know either. What I do know is she won't be having an ultrasound tomorrow b/c it hasn't been scheduled and all the techs are booked.
Of course, I fear this means she'll have one, be squeezed in between appointments and I will be in Worcester for a million hours.

I don't mind taking her to the doctor appointments.
I don't even mind that it takes an hour to get there and another hour to get back.
I just hate that it takes all day for an appointment.
I hate that it takes no less than 10 minutes to check in. EVERY TIME. They have her information, I should be able to hand them her blue card, my co-pay and have a seat, but nope, 10 minutes at least with the receptionist. Oh yes, that's with the receptionist and not including time spent waiting in line. There is almost always a line and receptionists complaining about the line... hmmm, maybe b/c it takes 10 minutes to check in!
I hate parking. Parking in the garage, if you can find a spot, has taken us up to 40 minutes in the past. Yeah. 40 minutes of driving around a parking garage hoping for a spot. You have to find a spot once you get in b/c the only way to get out is with a paid or validated ticket. The only way to get that is to go to the cashier or the pay machines in the lobby of the parking garage. That means parking your car, or hoping the roaming cop doesn't ticket you if you run it and leave your car running. There's always valet, which is a viable option, except it takes at least 20 minutes for your car to be brought back to you. Not such a huge deal, and it is only $5, but those 20 minutes can be (and have been) the difference between getting Norah home calmly or her having a meltdown b/c she's tired of being in her carseat or hungry, or wet, or over being all by herself in the backseat.

The snow is finally almost gone in the yard, thanks to the recent rain. I cannot wait for it to be dry enough to play outside. I'm sure the girls will love it.

That's all for now, I guess. I'm sure I'll be updating with what happens at the nephrologist within the next few days. Hopefully that's an extremely short post :)

reflux is the devil

true story.

We had another flux-y morning, only instead of it starting around 5, it started before 2...and lasted until after 7.

Oh, and the big one is really sensitive to the little ones crying so she was up about 10 times from 2-7 as well.

Bug's reflux really hadn't been bothering her, but this past week, every morning, she'd have a flare up. She started on zantac last night, so hopefully in a few days we'll have some relief.
Zantac is weight based.
Do you know where I'm going with this? I thought you might.
10 pounds 13 ounces.
That's less than 12th %tile. She was up to the 20th on February 1st. I can't even cry about this anymore. I'm so upset that she can't keep weight on. She NEEDS to put weight on. She's hitting all of her other milestones and doing well otherwise, but she needs to put some weight on.

I'm really hoping zantac is a miracle drug and she feels good so she wants to eat more.

here's to hoping.

Nephrology.

Life is not fair.
I know this. I think most people know this. I've made a few posts about this, and knowing this and still not liking it.

Anyway.

Norah has an appointment with the nephrologist on the 9th. We're going to poke around her kidneys to see if that's what's causing her hypertension. I don't want Norah to have another specialist.

Waaaaaaaaay back when, I said a heart condition didn't seem as big as the cystic hygroma. It didn't, then. I don't think I realized the gravity of all the other problems that could be lingering from the CH and I regret that now. I stopped researching other lymphatic malformations and focused solely on her heart. I'm glad I know as much as I do, but I wish I knew more. I wish I knew to expect more. There was no reason (ok, other than heterotaxy) to think she'd have other problems.

I don't like that my baby isn't perfect in the typical sense. She IS perfect, even if only to me, she is perfect.
She looks happy and healthy. Her heart is making improvements, as slight as they might be, on it's own. I hate that people look at her and see happy, healthy baby and then assume that what's "wrong" with her is no longer wrong. She isn't sick, but she isn't completely healthy either. I no that makes little sense and it's just so difficult to explain. I don't want people to treat her like she's sick or fragile, but she is. We do need to keep a closer eye on her health and limit some of her activity. We do need to go to the doctor more frequently.
I know she doesn't know that there's something different about her, and I don't want her to grow up thinking she's different, and I'm learning as best as I can to make sure that doesn't happen. I don't want her to think that she needs to be ashamed of her conditions either. Or for other people to be afraid that she's contagious.

ugh. this turned more into a pity party post than I intended.

so... pictures :)

they keep me on my toes!

everything was wonderful until 2am

We had a great night.

Belle used the potty and I'm so proud of her! She really has no interest in it, so saying she had to go and agreeing to use it when asked was huge. Not gonna lie, I cried I was so excited.

Buglet took 4 full ounces for the first time since we upped the calories in her bottles. Then, 2 hours later took another 3.

2am.

Norah starts getting fidgety and I know it'll be bottle time soon. She made it until just after 2:30 when she woke, ate and was back in her basket by 5 of 3.

4:30am she starts getting fussy. And wakes Jordan. Nothing is calming her, b/c her reflux is acting up. I can see and hear her retching and I know that isn't comfortable. Downstairs we go in hopes of the swing helping her out and, 40 minutes later, she's resting. Jordan is still randomly waking, crying and yelling "it's ok, Nori"

AND.

It snowed again.
And is currently snowing again.

Today needs a time out until it can act appropriately.

the birds are back!

I know, I'm probably the only person who knows this was the original blog background, and probably the only person who missed it, but it is my blog, so THE BIRDS ARE BACK! I'm very excited about it :)

In other news...
I fell yesterday. hard. straight on my ass. while carrying the Buglet in her carseat.

I was really shaken up by it, but my mother (who was walking 2 steps behind me) was quick to point out that Norah was fine and it was as though I just put her carseat onto the ground and I was the only thing that went down.

stupid ice.

I cannot wait for it to melt so the girls can play outside. I cannot wait to get the swing set that we bought last year up - I know Jordan will love it and I'm sure Norah will like swinging.

that's that. I'm just super excited about the birds and had to announce it :) it's the little things that make me happy!

I'm back! with a cardi update too :)

Finally, really back!! Thanks to Nick's friend Dave, our computer & internet are working as they're supposed to again. I love Dave. He's just the best tech support around!

Norah had another cardi appointment today. It was 98% good.
She's not gaining weight as well as the dr would like (but she is up to 10lbs10oz), so we're going to up her calories by adding some extra powder to her bottles.
She has high blood pressure. 12 week old infants should not have high blood pressure. And, it.is.high. Not borderline or kinda high, just high. Today it was 111/74, babies under 6 months old should be around 85/45. Told you it was high. High bp in infants/kids is typically caused by kidneys.
Speaking of kidneys, I finally got the results of her kidney ultrasound from way back in December, and learned that the hydronephrosis in her left kidney had resolved, but her right was still grade 1. So, basically, her hydronephrosis is to minor to cause hbp. We'll continue to monitor it at her appointments and decide in April if she should see another specialist.

Yes, I said April.

Since things look so good, she goes back in 2 months instead of 1. I told y'all it was a mostly good appointment. The tissue forming near her ASD is still forming and starting to be were it's supposed to be. Her pulmonary stenosis is unchanged, her pulmonary hypertension has finally resolved (typically resolves between 10 & 14 days of life in healthy babies), and her blood flow is all left to right. And, AND there's some tissue off her tricuspid! I KNOW!!!
Yeah, I realize you're reading this like 'wtf does that mean' and so I'll tell you wtf it means. It means, there's tissue forming between her ventricles. It starts by forming off the tricuspid valve and then takes hold onto the ventricular septum. I cannot even tell you how much we were hoping to see that. Now, instead of calling the specialists up at Children's in for her next appointment, we can continue to wait and see.

It's so amazing that her heart is starting to heal itself a little.
I can't even describe how wonderful it is to hear that her body is doing it, or how cool it is to see it on the ultrasounds, or how neat it is that I can see and am starting to be able to identify it on the ultrasounds. Of course, that last part could just mean I spend way to much time checking out her heart on ultrasound machines o_O


Jordan is doing great. She continues to amaze me everyday with all the things she's learning and doing. Jordan is a little Mommy through and through and loves her dolls and her sister like there's no tomorrow. I find myself just sitting back and watching her be such a little girl. I hate how fast she's growing up, but I love watching her grow and learn.

and now it's bath time, so off I go!

still alive

I can't even sign in to blogger lately on this computer. Tech support will check it out soon, I hope.

girls are good.
J is funny and knows it. N is desperate to stand so we broke out the excersaucer.

that's it for now. I will catch up when I have both hands free, but right now my buglet is sleeping on me making it a little difficult.