One day Ruby is going to look at this website and be really embarrassed.   Mostly becasue of this post.  She doesn't have a baby book, becasue I know myself well enough to know that I would NEVER update it.  A website though, I'm pretty good at.

 You can say many things about Ruby's digestive system, but one definite thing is this girl  is regular.  Like clockwork at 4:30 every morning we are waken by the sound of her grunting.  One of us goes in to find her grabbing her ankles red faced and grunting.  Even at 4:30 in the morning it's hard not to laugh.  All we have to do it change her diaper  and give her a kiss and she falls right back asleep.  I take a picture but we don't turn on the light for fear of her not going back to sleep.  Trust me when I say it's cute.

Nothing like talking about your daughter's poop on the internet at 4:30 in the morning.

Well....  I'm not as tough as I thought was.  I gave in.  After she only took 3 ounces total this morning I broke.  I gave her a full feed through the tube at 10am.  In my defense she has PT at 11:30 and it was going to be horrible session.  Ruby was hungry and she knew she was hungry.  She was signing for milk like crazy.  I'd give her some, and she'd drink for 5-10 minutes and then fall asleep for 20 minutes, rinse repeat.  At least she was making the association of being hungry and wanting milk.  That's huge, as she wasn't doing that a month ago.

Also I'm never sure how much milk to heat up.  You can't reheat a bottle after an hour the milk has to be  wasted. I HATE wasting milk.  It really is liquid gold.  We are fortunate enough to have two wonderful women donating to Ruby.  I hate the thought of their hard work going down the drain literally.

 I don't feel like this experiment was a complete failure.  We learned that she really does know how to sign for milk.  We also know that she knows she's hungry.  Hopefully next will go even better.

As for Mom and Dad it's hard to not sit down with each meal and hope "This is the meal."  This will be "the one" where she starts eating.  So far it never is.  We'll get through this.  I can't wait for the day that she's eating us out of house and home. At least she's not on ECMO :)

Well, Ruby pulled out her tube yesterday during her afternoon nap.  We haven't put it back in yet.  We're supposed to let her get hungry and only feed her what she takes by mouth once a week.  I know it's Doctors orders, but I have been lax about doing it.  I always seem to find a reason why today should not be the day I starve my child.  It was time for some tough love on my part yesterday.  So when she pulled it out, I left it out.  I'll put it back in before her afternoon nap today.

So far she's taken 2 ounces of fortified milk, one ice cube of avocado, and one ice cube of butternut squash since yesterday 1pm.  I'm going to give her her Nexium as soon as she wakes up and we'll see how the day progresses.

I'm going to ask that unless you yourself had a child with severe oral aversion and was on a feeding tube for an extended time, please don't give advice.  While I'm sure it is well intended, I personally can't take it.  This is hard.  Very hard.  My child won't eat.  So unless you've dealt with this please just lend support.  Understand that we are trying EVERYTHING.  We have the best Doctors in Austin and Philadelphia helping us.  This is a long frustrating road.

That being said, we are in much better place than we were 7 months ago today.

Happy 7 Month Birthday Day!

Just though everyone might need something to brighten up their Monday.

Ruby and Ella seem to feel the same way about the situation.

Ruby was so excited she wouldn't stop moving.  That's why the picture is so blurry.  You get the point though.  Ruby obviously LOVES Bobby! 

Ruby LOVES the cats.  I'm afraid the cats don't understand how much their lives are going to change once she mobile.    If she sees one of them all she does is try to get them and talk to them.  Right now they rank right up there with ceiling fans and trees with leaves. 

Ruby's favorite new toy is the end of her NG tube.  She loves to grab the tube and twirl it around. What she loves even more is to suck on the end of it.  We've tried to explain to her that she's creating a "closed circuit"  that isn't going to do her any good.  The tube is taped shut.  I just wish she was old enough to understand the irony of it.  The only thing she will suck on is the tube that leads to her stomach.  She's had a few "bad" eating days.  We know there will be ups and downs and we have definitely been on a down the last couple days.  If this continues we'll start  looking for a problem.  I'm hoping it's just another dip and nothing is wrong.  Other than Ruby not really eating we've had a great weekend.

I ran 16 miles on Saturday morning so Chris and Ruby had some quality time together.  Chris was trying to finish putting up new gutters before the rain started today (he didn't get it done).  He got creative with feeding Ruby in the back yard.

Maddie's Mom gave Ruby a shaker egg for Halloween.  Ruby LOVES it.  She plays with it all the time.

Saturday afternoon we managed to fit in some family hammock time.  Ruby loves to lay in the hammock and look at the tree leaves.

Chris and I are finally starting to get back into the groove of being home.  We've been able to have more and more friends over for dinner.  Since we can't really take Ruby out much our friends are kind enough to bring the party to us most of the time.  We had our good friends April and Sean over for a wine and cheese tasting.  April and I were college roommates and she actually introduced Chris and I.  It's funny how they now live just down the street.  Ruby didn't get  to taste any of the cheese or wine.  She did however get homemade chicken, brown rice, and butternut squash.  My food processor has been working overtime lately making Ruby's food.

Ruby woke-up extra early this morning.  I don't think she's used to the time change yet as she has been waking up at odd times all week.  She fell asleep while eating her oatmeal.

It's a rainy day today.  We were going to go to the park and swing, but the weather hasn't allowed it.  Instead we have stayed home and relaxed.  We've watched movies and napped.  It's been nice to just let the chores go and take advantage of the snugly weather.

Ruby starts making the rounds for her 7 month check-ups this week.  Chris's Birthday is Wednesday so it's gonna be a fun and busy week.  I am really looking forward to her Doctors seeing her.  I feel like we have made some good progress on many fronts this month.  If only the eating would pick up things would be perfect. 

We hope everyone has had as good a weekend as we have. 

We've had perfect weather this week.  It's in the 70's during the day everyday.  Ruby is having so much fun playing outside.

We've just had PT and OT this week, no check-ups.  She has been a little cranky from the H1N1 shot and teething.  Yesterday and Tuesday we the worst.  This morning she woke-up her normal happy self.  Thankfully!

We also tried to get her to only 5 feeds a day.  He little tummy couldn't handle the volume.  So we backed back down to 6 feeds.  We'll try increasing the volumes again in a couple days.  She was really close.  She could handle 135ml per feed, but once we gave her 140ml in one feed she couldn't.   She was just to full.  She's been eating wonderfully.  She loves all the homemade purees.  Today we're going to try chicken and rice for the first time. 

We are also getting into a nice routine of her taking her morning nap in the running stroller.  She seems to really like it.

We've had a busy few days.  Finally yesterday we got to just hang out and relax. 

Ruby saw the GI doctor on Friday.  He said she looked great.  We got the go ahead to reduce her to 5 feeds a day if she can handle it.  That means we can finally take advantage of the fact that she sleeps through the night!  To get to 5 feeds she needs to be able to take 140ml every 3-4 hours during the day.  So far she is handling as much 135 ml during her feeds.  So, we are almost there!  We also don't have to go back to the GI Doc until the end of January!  Woo-Hoo!!!!  It's nice not to need a monthly check-up with him.  He did say that he's not willing to say she won't ever need a fundo, but we can worry about that later.  She is steadily eating more solids and he was happy with her improvements in eating.  Her weight gain dropped off but she still gained.  She was 13lbs 13 ounces.  We have been skipping feeds in the attempt to make her hungry.  He wasn't worried.   She looks well nourished and is happy.  Ruby was so happy at the appointment.  She was jabbering and smiling at EVERYONE.  All in all it was a good appointment.

Ruby also got her first dose of H1N1 vaccine.  She will get another in a month.  I know there is controversy about how many vaccines are needed.  For now the US Health Department is still recommending two doses for children under two.  Ruby's doctors are, too.  We got it at the Pulmonologist's office.  Her pediatrician didn't have any yet.  We did have to get one with the preservative.  Everyone involved in our decision making process agreed that the benefits out weigh the risks.  We were able to get one of the first shots because Ruby is so high risk.  I'm not sure if the fact that I called everyday had anything to do with it, too. 

Another nice development on the sleep front is that Ruby is able to ride in a running stroller now!  That means a couple days a week I can sleep in and take Ruby  on my run later in the morning.  She can only handle 3-6 miles in the stroller.  I can't take her on my Saturday,Monday, and Wednesday runs, but Tuesday and Thursdays are perfect distances.  She seems to really like it. 

We now have a standing swinging date with Maddie and Ben on Mondays and Wednesdays.  Ruby really likes to swing!

When Ruby had her fill of swinging, we sat down in the rocks and played.  She loved the feel of the rocks on her feet.  Hopefully the weather will continue to be nice and we can play outside all winter.

I have filled up the hard drive on lap top with pictures of Ruby.  We have over 5,000 pictures.  Chris's big computer is borken due to a power surge.  For those of you who have seen our house you'll know how weird it is that Chris's big computer isn't working or that we have no more hard drive space at the moment.   Hopefully Chris can get it fixed soon and we can backup the pictures.  I can't download to many more photos.  I have some cute ones, but they'll have to stay on the camera for now.

HAPPY HALLOWEEN!!!