Ruby Hope McKee Starling

Here's a video of Ruby on the move.  Ignore Oprah in the back ground. 

Today was the first day of Ruby's life that she was not required to wear any medical equipment.  It took 10.5 months, but she finally did it.  The only thing she has left is the gortex patch in her diaphragm.  That better stay put forever, as far as we are concerned.

The picture is from yesterday.  All the pictures I took today are blurry, because  Ruby is officially on the move.  She's crawling.  We've had a few tears from face plants and head bumps.  She is used to having her head protected.  She's smart and by this evening was already to starting to figure out that she should lay down using her arms.  With the helmet on she could just flop backwards without hurting her head.

As for eating Ruby took 24 ounces today!  She'd been averaging 20 the past few days.  We need her to be consistently taking 22-24 ounces and gaining weight.   Hopefully this will start to happen.  She also took that 24 ounces in only 3 bottles!

I'll try to get a video of her crawling tomorrow. 

It doesn't happen often in Austin, TX.  It is really and truly snowing!

Good thing I found some pink furry boots on sale last week.  Right after this picture was take Ruby learned that Prickly Pears really are prickly, even if they are covered with snow.

We're going to snuggle up in front of the fire and enjoy this very rare weather. 

We've been waiting to make it official, not wanting to jinx ourselves, but after two weeks of holding our breath, I think we can call it:  Ruby is officially off the NG tube!

It's still pretty tentative and any little setback, like her getting sick, could put her back on the feeding tube.  I was begging Holly to let me make this post after the first week, but she wanted to make sure we wouldn't regress.  Ruby has been eating all her food on her own for 14 days now and she is gaining weight, which is huge.  She isn't gaining as fast as when we were stuffing her belly full through her nose, but we had been expecting her to lose weight so even a tiny gain is awesome.  She is taking about 90-95% of the volume she needs, usually around 22oz per day from the bottle (24oz is the goal).  But she more than makes up the rest of the calories with yummy foods she's discovering.  Her current favorite is avocado smoothies, made with homemade yogurt, avocado and whole milk.  We usually give her bites of whatever we're eating (if it's safe for a baby to eat) and she seems willing to try anything.

The weather was finally beautiful today, and we ventured out to Central Market for lunch.  I strategically picked a table away other families and germy kids.  Ruby and I shared the sweet potato fries that came with my burger while Holly had some sort of salad.  A band was playing swing/jitterbug music and Ruby boogied in her high chair .  Afterward, we strolled around outside a bit and Ruby got to bounce on the limbs of a giant old Live Oak tree:

Ruby has apparently already partied too hard today.  She is obviously very tired.

Ruby is 10 months old today.  We are so proud of her for making it to 10 months.  She's doing so well.  It's hard to believe that in two short months she will be 1.  Crazy!  It seems like yesterday I was going to CHOP for monitoring appointments twice a week.  Stay tuned for Birthday News.  A Blood Drive/Party is in the works.  Hopefully we'll be able to post details soon.

As for other milestones, Ruby got one of her top front teeth.  That's a total of 3 teeth now.  We have also been off the ng tube since Sunday.  She is taking a solid 18-20 ounces of 27 calorie formula, 3 meals, and a couple snacks a day.  She stills loves hummus and we've added avocado smoothies to the mix.  We even gave her Migas for breakfast yesterday. Which further proves she is a native Austinite becasue she loved them.  Really though who doesn't love tortilla chips, eggs, salsa, and cheese?  She also had her first experience with Chili Mac (or for those of you in Cincinnati, Cincinnati Style Chili).  We are members of a dinner coop and that was our contribution this week.  Ruby loved the oyster crackers, cheese, and red beans.  She didn't care to much for the Chili, but we'll keep working on it.  Here's Ruby enjoying her Chili Mac 3-way.  She's also showing off one of her new faces.  We can't  quiet decide of she's happy or mad when she does this.

Ruby is successfully getting into  quadraped on her own.  She can go from laying on back to her tummy, to sitting up all on her own, too.  Crawling is only days away.  Her Physical Therapist thinks her torticollis is pretty gone and that we should be able to go bi-monthly appointments soon.  How cool is that?  We love our PT, but it'll be nice to be rid of one treatment session a week.

Here's Ruby after she FINALLY feel asleep for her nap yesterday afternoon.  I to resort to giving her some motrin to get her to settle down.   Notice the lack of a right sock.  She always pulls off her right sock.

It's cold and sleeting outside today.  We've had a pretty cold winter for Texas this year.  I know it's nothing compared to what our friends in the Northeast are experiencing right now.  I'm hoping once Philadelphia dig themselves out we can finalize our travel plans for Ruby's one year check-up.  We are excited at the thought of  seeing all of our friends at CHOP.

Ruby has learned to say more book.  It sounds like "mo bo", she says it as she lunges toward her bookshelf.  She also gets upset if only read one book at bedtime.  She loves to turn the pages.  Her Grandparents were here this weekend and got to witness her love of books.

We pulled out her feeding tube this morning.  We're going to leave it out until we absolutely have to put it back in.  Hopefully the next couple days go well in the eating department.

We hope every had a good weekend.

While we are very grateful that Ruby is doing so well.  We are very grateful that we had the means and ability to go to CHOP and have her.  We have had the most horrible luck since we got home when comes to our house and cars.  Since we got home we've needed a new roof and a repair of rotted wood on our workshop.  Then appliances started breaking.  So far the oven, microwave, dishwasher, and dryer.  Some were under warranty and the rest we've had to replace or fix.  Then this morning the check engine light on one of our cars came on.  It's going into the shop this week to be fixed.  Not exactly the best luck around here as far house stuff goes.

Now for a feeding update.  I pulled the tube Friday before lunch.  On Saturday, Sunday, and Monday Ruby took 16-18 ounces of formula and ate well, too.  Then today as of 6pm she had only taken 6 ounces of formula.  Without tube she has to take her reflux meds by mouth.  Sometimes she swallows them  no problem.  Other times she will spit it right back out.  She wouldn't nap today and I know her reflux was hurting her.  The Nexium doesn't keep her from refluxing, it just neutralizes the acid so it doesn't hurt.  She would cry and cry every time I laid her down, even if she was already asleep.  So, this evening I put the NG tube back in.  While we feel she did really well, we knew we would have to put it back in.  We'll give her a couple days to recover and then try again.

Lost is on and I haven't downloaded the most recent pictures.  I'll post some pictures tomorrow.  For now it's time sit back and relax.