Cautiously Optomistic...

Yesterday we met with Arianna's nutritionist and received many accolades on our work with her - she's doing great. We didn't weigh her at her first visit 2 weeks ago but did weigh her today using the weight from the GI office from 3 weeks ago. She's lost 12 ounces. Hmm... I know different scales can have different weights but 12 ounces seems like a lot. I won't worry until the next appointment and just be happy she eats everything now.

Shawn has 4 interviews this week and next. First one was this morning. We've got our fingers crossed that at least one pans out!

Our cruise is 7 weeks away. Hopefully Shawn has a new job by then so we can actually enjoy it...

I hope either way I can enjoy it. I'm feeling like I got hit by a car, had my stomach ripped out and put back in, my head slammed into a vice for hours a day, my nose stuffed with cotton and my tongue scrapped with a brillo pad - all at once. I feel so ill I just want to sleep the next 7 weeks away... I can't concentrate at work cause I feel like such crap. I forgot how much this part of pregnancy sucks. Oh well...

Remember?

Remember my cute video of my hubby's reaction to the news?

Remember what he said?

He had good reason to be worried I guess... today we found out his contract will not be renewed.

Super yucky timing... Ok, I'll say it. Super shitty timing...

Does premature birth run in your family?

Premature birth runs in my family - My grandmother had many problems
carrying to term resulting in several deaths, I was born at 30 weeks,
my brother at 34 weeks and my daughter at 28 weeks.

There is a study at Washington University School of Medicine that is
recruiting people that have a familial history of preterm birth.

If you have a familial history PLEASE sign up for the study. It
involves 2 parts - a questionnaire and a DNA sample (via saliva).

http://fetalstudy.wustl.edu/fetal/fetalp.nsf/

I hope you can all agree that it would give all preemie moms great joy
to know they helped further the study of why preterm birth occurs and
possibly find an answer!

We're on a roll!

This morning Arianna asked for breakfast.

Yes, she tugged on Shawn's pant leg while he was making her a scrambled egg saying "uh yum yum, uh yum yum!".

She's never done that!

We're on a roll!!! WOo HoO!

She's getting so big now... it's making me cry!

a question for moms...

Moms of 2 or more...

can you sneak over to my pregnancy blog and answer a question I posed in my latest post? I need some reassurance so I can sleep tonight...

Season of change

The last few days have been surreal here. I really feel like I'm living an out of body experience.

Yesterday Arianna ate pineapple at lunch and refried beans and hamburger at dinner. This morning she had blueberries with her cherrios and baked fish at dinner. Then she proceeded to grab my hand, wave at Dad while saying "bye bye! nigh nigh dada!" and pull me back to her bedroom so I could lift her up into her crib for bed. She wouldn't even let me read her bed time story.

What kid tells you when they want to go to bed and goes from eating NOTHING to eating everything in just a few days? I really am living in a surreal world here.

To top it off... she hasn't had Prevacid in 3 days (mostly due to us forgetting with all the food changes) and hasn't complained.

To add to the mass confusion here my mother dropped a bomb on us. When Ari was super sick in daycare last year my parents graciously took her in for 7 weeks while we got her through the winter and gaining weight again.

When it was time to send her back to daycare my mom requested one day a week - she wanted to watch her granddaughter one day. Ok... sounds good to us.

Then we took her out of daycare and hired a nanny - Mom still wants to watch her so we found a nanny that only worked 4 days a week and we LOVE Sarah! Well... last week my Mom said she wasn't going to watch her anymore - totally out of the blue. No "I'll watch her until you can find other arrangements", no "I just need a few weeks off" just that she couldn't watch her anymore.

I know I should be thankful for all time she has watched her but I'm very resentful of this sudden change in plans... so I've been calling around trying to find some place to take her for 1 day. I'd actually like her to get interaction with other kids and Monday would be a good day of the week for that - long time to recover from illness' she's bound to get.

But every place has a 2 day minimum!

I put an add on craigslist and a lady with a licensed home based daycare replied. She has a little boy that's just a little older than Arianna and on Monday's she also watched another little boy just a few weeks younger than Arianna - so she'd get to play with two kids - how fun!

We're going to interview her on Saturday and hope for the best!

I need some antacids... I can't take all this change anymore.

So... she drinks too much

We met with Arianna's new nutritionist last night. I asked her nanny to plan on staying late so that the two of us could present our experiences with Arianna and eating.

The conclusion - she drinks too much and it's filling her up.

Um.. ok, I feel stupid.

When we started transitioning Arianna to solid food she was drinking the bare minimum of breast milk: 18 - 20 ounces a day via bottle. I was very concerned of starting solid food because she already didn't drink enough. I never though I would hear the day that she drinks too much milk. I did alot of research and everything I read, at the time said that food was simply in ADDITION to the milk she was already taking in. So our solution was to let her drink everything she wanted, through out the day. Currently she is drinking 30+ ounces a day of milk/eggnog/apple juice/PediaSure. We let her drink all she wants. As a matter of fact the only 'food' she will ask for is her 'baba' (sippy cup). We will usually leave a full 12 oz. sippy cup of apple juice in her crib at night and it will be gone in the morning.

So... the nutritionist is having us do some big changes.

1. No eating in front of the TV
2. Set a time limit to the meal
3. Make her eat what we eat but offer one food we know she will eat
4. No sippy cups in the crib
5. No sippy cups outside of meal time
6. She always eats at the table with at least one other person
7. No distractions and include her in conversation
8. When she starts fussing or playing with her food - she's done.
   

We will continue to fortify her meals with extra fat/calories and meet with her again in 2 weeks. She anticipates that it will take a 'few days' for her to catch on that the only time she can eat/drink is meal time but when she does we will see a drastic improvement in her eating and self-feeding ability.

I hope it works. This morning we got her out of the crib, she immediately started with "elmo, baba, baba" because she's used to eating breakfast while watching elmo. Shawn made toast while I got her changed and we sat her in the high chair with 1/4 of a piece of toast (one toddler serving out of the 4 per day she should get, btw) while we all sat at the table. She also got a container of Le Creme yogurt and a small sippy cup of milk. She drank the milk, played with the toast and had 3 spoonfuls of yogurt...

I'm optimistic and hopeful. I also feel a bit like a failure because this is common sense stuff and we've been doing the exact opposite for over a year...

I wish kids came with a manual, seriously.

UPDATE:

Talked to the nanny...

...SHE'S EATING!! SHE ATE A SNACK AT 9:30 AND PART OF HER LUNCH AT 11:30!!!

I feel like crying... doesn't take much these days, of course.

She's not hungry...

Yesterday was a bad eating day. In her defense she got a flu shot and had an appointment with Audiology, both of which had her crying uncontrollably.

We realized something the last few days. She not hungry. EVER. Even as an infant (as seen in this picture ->)

Arianna has never told us when she wants to eat. Once she starts eating she'll say 'more'... but she has never initiated the eating process. She eats wonderfully when we put her in front of the TV - but that's because she doesn't notice us shoving full fat foods into her mouth.

I would think that, by age 2, a child would be a pretty self sufficient 'self feeder'. They will take food and put it into their mouth, or will use a spoon and eat with it - right?

Arianna does neither of these things - we have to sit with her and hand feed her every meal. If I give her the spoon or leave finger foods with her she'll throw them. Her nanny and I are convinced that she'd go all day without eating...

The craziest part is that she put on 3 lbs. since her GI appiontment in October. I know this is due to the eggnog we were stuffing her with - but you can't get eggnog in the store anymore.

She really has me frustrated. I'm also tired lately so I know that has alot to do with my patience concerning her eating but I would think it would get EASIER and not harder.

At least she would hold and drink her own bottle as an infant...

What do you do to get your child to eat? I'm open to all ideas because I'm at my wits end...

Can I ask for some prayers?

I just found out my baby brother fell off a roof he was working on today. He's going into surgery soon to repair he crushed tib/fib but they're also doing an MRI to check for damage to his spine...

I don't know much else - I'm waiting on his fiance to call me back, but please keep him in your prayers tonight!

Thanks!


UPDATE:

I'm going to personally wring his neck...

He had surgery this afternoon. They were going to place a rod in his leg but ended up doing several plates and a few screws.

Surgery took 1.5 hours more than expected because his oxygen saturations levels kept dipping to the 60s. His surgeon told his fiance that "we had several close calls". A normal healthy 27 year old wouldn't have this happen to them.

Except one with severe asthma who smokes a pack a day!

Like he hasn't listened to us tell him what a stupid idiot he is for smoking all these years... I hope this is his wake up call!

I'm going to personally wring his neck... and then give him huge hugs and kisses

When will it get better?

She's slipping again... and she's not sick. This is new territory for us and I don't know what to do.

Arianna has pretty much stopped eating. It's a struggle to get her to eat anyway but now its close to impossible. Last night for dinner she had 1/4 of an egg with cheese and force fed ice cream. This morning she was offered a cheese stick, didn't eat much and won't eat anything for my parents.

She's going on two in a few weeks - when does it get better? When will she eat a cookie like normal babies?

Thankfully she see's GI today but I don't expect much change. I put 9 month pants on her this weekend. They fit beautifully...

... but she's 22 months!

Breaking the news...

http://www.youtube.com/watch?v=9vbZsQy2nx4


And yes, he's happy about it...now

Genetics

I finally got in to see Genetics on Wednesday. Dr. Shur got pre-authorization from my insurance company to submit blood tests to the company that tests for 5 of the 7 genes associated with Long QT Syndrome.

She also found a lab at John Hopkins that we could submit to that would test for Long QT 7 (aka Andersen-Tawil syndrome).

She asked me which I wanted to be submitted for first. Depending on the results of the first we could then submit for the second. After much discussion/debate we submitted to John Hopkins first because she feels I better fit LQT7 based on my 'physical features' than the other LQT genes. I don't necessarily agree but figure we might as well cover all our bases and test for everything available.

Andersen-Tawil syndrome affects the heart, symptoms are a disruption in the rhythm of the heart's lower chambers (ventricular arrhythmia) in addition to the symptoms of long QT syndrome. There are also physical abnormalities associated with Andersen-Tawil syndrome, these typically affect the head, face, and limbs. These features often include an unusually small lower jaw (micrognathia), low-set ears, and an abnormal curvature of the fingers called clinodactyly.

I don't have well... any of that other than a ventricular arrhythmia. But she's the geneticist so who am I to argue?

I left her office and went down to the blood lab totally ready to get poked 95 times like I always am, but the phlebotomist was really good (and younger than me, I still have to get used to the fact that I'm not as young as I used to be) and got it on the first try!

Boy was I impressed!

Now we wait 4 to 6 weeks and if the results come back negative (which I'm fully expecting them to) then we draw again and its another 4 to 6 weeks (and $5000 my insurance company has to shell out) for the other test.

If they all come back negative we're left right where we are now - no answers. Just because they don't find a documented gene in me doesn't mean I don't have LQT Syndrome - it just means they haven't found it yet and we still have to guess if Arianna has it. Guessing with LQTS is bad... cause if you guess wrong you don't always get another chance to make it right, and as a parent, thats the scariest place to be.

5 years

Tomorrow makes 5 years that I've been married to my wonderful husband, Shawn.

He is, quite possibly, the ONLY person in the world that could put up with me. I'm a bitch... ask my family and friends! LOL Yet he manages to put up with me and all my faults and doesn't dwell on them.

Not only that but he's the most amazing father Arianna could ask for. I'm a great mom, but its only because he's a great father - he knows when I've had enough and steps up to the plate to take over, thus allowing me the time I need to decompress.

I don't think I could have asked to meet a nicer person in a chat room in 1999. Hard to believe he first moved in with me 8 years ago...

So to celebrate our 5 year anniversary I got him this present. I think I'll give it to him tonight.

Do you think he'll like it? I hope so!

Public access to NIH research!

Public access to NIH research


FINALLY!!!

I don't have to pay money for abstracts anymore - I can get access to NIH funded research when I want!

This is HUGE folks... really huge. I no longer have to wait years to find out what LQTS research has been going on. I no longer have to wait years to find out what new prematurity related research is done...

Huge, really huge!!!!