Ruby Hope McKee Starling

For those of you not Facebook here is a video of Ruby.

We aren't going to mention Ruby's lack of symptoms or how we might have dodged a bullet.  Don't even say it or think it.  For now we are going about life as usual.

We saw Dr. Z the GI Doctor yesterday.  He went on and on about how Ruby is a miracle baby and how good she looks.  It was a good visit and he gave some guidance on weening her off the NG tube.  We are going to leave it out until she absolutely needs it.  He said not to worry about her loosing a bit of weight.  The plus side of her being sick the past couple weeks is that she is now over 16 lbs.  Which is a nice way to go into a more aggressive ween schedule.  He also said once she off the tube we can start to ween the Nexium.  Nexium does have some side effects in adults. It isn't really good for bones to take for a long time.  That's in adults, we don't really know the effect it has on children.  The scientist in me wants to research it like crazy.  The Mom in me is just going to go with the flow.  Ruby needs it and getting all worried about the possible side effects it's not going to change the fact that she needs it.  If causes problems later on we'll deal with it. 

Anyway, I pulled the tube as soon as we got home yesterday afternoon.  Ruby didn't take much from the bottle yesterday after the tube was out, but she did eat a lot.  She ate half a small dosa with coconut chutney (I got some frozen ones from the Indian Grocery down the street) for lunch.  Dosas are like crepes filled with potatoes and vegetables.  It wasn't spicy.  Ruby really loves strong complex flavors so mild Indian and Thai foods are really popular with her (and Mom and Dad for that matter).  Then during OT after her nap she ate 4-5 veggies straws and a couple tablespoons of hummus.  Veggie straws are really one step away from potato chips, but she likes them and they are made with vegetables.  I'm not thrilled to be feeding her junk food even if it is organic.  She loves to dip them in hummus.  I made the hummus with half as much garlic as normal and it seems to have worked perfectly.  She was smacking her lips and smiling.  She even let Alyson (her OT) feed her hummus with the NUK brush.  It was such a good session.  She was laughing and interacting the whole time.  She has no trouble telling us when she's "all done".  Her signing has really picked up in the past couple days.  She has also mastered drinking from a straw.  She drank a lot of water all her meals yesterday.  I also offer her whole milk in a straw cup at each meal.  She will drink a bit but not much, really she prefers water.  We don't put the formula in the straw cups, because we don't want her associate the straw with formula.

Before bed last night she drank a full 6 ounces from the bottle!  So the day ended on an even better note.

Here's Ruby love'n her hummus

I'm procrastinating about going for my run this morning.  I missed my group this morning as they started at 6am and I didn't wake-up until 5:50am.  I'll post a few more pictures and then I'll go.

She loves my watch.  Which is just gross.  I will come in from a twenty mile run and all she wants is for me to pick her up so she can suck on my watch.  Yuk.

Really the letters RSV are some the scariest things a CDH parents could hear.  RSV is up there with ECMO and blood gas numbers in my opinion.  We found out that Ruby inadvertantly was exposed to RSV on Monday afternoon.  It takes 4-6 days for symptoms to occur if she is infected. We have been really good about keeping her isolated, but these things happen.  This is why she gets the synagis shots.

We are officially on RSV watch at our house.  Plus we've buckled down even more on the isolation stuff.   We've been  told that there is an out brake of RSV in Austin right now.   We are really hoping she doesn't get it.  maybe just maybe we'll get lucky.  If not it had to happen sometime and we'll deal with it.

It seems that Ruby might finally be feeling better.  She has significantly less sinus drainage today.  She also just seems happier.  Hopefully that is the end of the cold and ear infection!

We've had a nice weekend at our house.  Chris has been working very long hours and finally we had a weekend that did not involve him working.  We were able to catch up on some much needed family time. 

Ruby is getting more and more mobile.  She still lacks the strength to stay in quadruped long enough to crawl.  Hillary her PT is working with her on it.  Ruby has figured out how to get around without actually crawling. 

We have a check-up with the GI doc this week.  We're feeling apprehensive about this visit.  She's come along way, but the cold has set us way back feeding wise.  We'll see what Dr.Z has to say about the situation.  Hopefully Ruby's eating will pick-up this week.  We did have a scare tonight at dinner.  Ruby choked on a small piece of green bean.  Luckily Chris and I were able to act quickly and dislodge the culprit.  It didn't even phase Ruby she coughed it up and then started smiling.  Chris and I on the other hand are still recovering.

Here's some pictures from the week.

You can't tell they are related at all can you?

Here's our silly silly girl.

You can't fool me.  I knew this cold wasn't clearing up like it should.  Ruby has been coughing more the past couple days.  She's been throwing up more due to the coughing.  Coughing and reflux make for a big mess.  It seems like she just has a lot sinus drainage that makes her gag and cough.  Then today she would not nap unless I was holding her.  Even then she only slept from 2:30 to 3:15 this afternoon.  She is very good napper.  Other than coughing and not sleeping she is really happy.  Pretty much normal sick Ruby  behavior. 

I kept thinking of our docs at CHOP saying they look at the whole baby.  Ruby wasn't acting to terribly sick, but she wasn't acting normal for her.  She also seems to get out of breath faster than normal,too.  Long story short I called her pediatrician and got her in this afternoon.  I am always torn about which specialist to call.  In the end we decided the pediatrician could listen to her lungs and let us know if we should all the pulmonolgist.  Plus the pulmonologist has some pretty tough receptionists.  I've had a couple issues getting through to the doctor a couple times.  It has always worked out, but I've had to be a little more persistent than I would like.

Ruby has an ear infection.  Her lungs are clear!  She does not have a fever, but her right ear looks " a little red".  Dr. Dan gave us a script for amoxicillin and told me to give it to her if she's not better tomorrow.  Then he said he wouldn't argue with me if I wanted to give it to her today.  We've opted to go ahead and give it to her tonight.  It seems funny to have a discussion on whether or not to give her amoxicillin when she was on all the big gun antibiotics for so long.

As usual Ruby smiled and blew raspberries at Dr. Dan.  She waved to the office staff and nurses.  I had keep telling them, "no really something isn't right."  Thankfully they always believe me.

Hopefully Ruby will get some good rest tonight.

With all drama of Ruby having a cold we forgot to mention that she is officially 9 months old.  Woo-Hoo!!!!! 

Now for the numbers:

26 inches

15 lbs 8.5 ounces

They checked her Iron levels and gave her, her third Hep B shot.

As for other mile stones....

Ruby loves to give high fives and turn the pages of her books.  She is blowing raspberries (click link to see a video) and jabbering.  She can say Ma, Da, Ella, and Ba (for Bobbie).  She will sign for milk and all done.  She loves to be sung to.  She will now sit on her own and play for long periods of time.  She likes to stand and bounce, too.  She's not quite crawling yet, but we are getting really close.

As for her cold she's feeling much better.  She still has a cough and some congestion.  Hopefully she will continue to to beat this.

Here she is giving me a High Five.  She also did her own hair using a special mixture of cheerios and yogurt.

Ruby was doing so much better today.  She's still not eating much, but her personality is back.  She's still taking longer than normal naps and gets tired faster.  Hopefully this cold has almost run it's course. 

To celebrate everyone starting to feel better we had Breakfast for Dinner (BFD).  Ruby got her first taste of blackberry pancakes.

Ruby's new thing is blowing raspberries.  Yesterday while in the car all she did for 20 minutes was blow raspberries at other cars.  She also did it to anyone who look at her while we were picking up our CSA box.  It's insanely cute.  I've tried to no avail to get it on video.  I'm gonna have to be stealthy to get her on camera doing it.

After the last couple weeks, Chris and I are beat.  We are looking forward to an evening on the couch tonight.  Ruby's breathing is finally almost back to her normal.  It'll be the first time in almost two weeks that we can both relax for a bit.  Then tomorrow night Becky is going to watch Ruby so we can have a date. 

I think we have climbed the mountain and are working our way down the other side.  Ruby is doing much better.  She'll still pretty snotty, but she is obviously feeling better.  She's not eating.  Hopefully that will come back in the next couple days.

I'll put up a better post with pictures in couple days.  I feel the need to wash EVERYTHING is really hot water.  I'm also hoping that i don't get sick, too.  So far so good in that department.

Well...

It's official Ruby is sick.  We saw the pulmonolgist this morning.  Thankfully Ruby is satting fine (98%) and it's not in her lungs.  The Dr. did say he could hear some congestion, but he said her  lungs sounded "OK for now".  I would prefer the normal "GREAT!" we usually get from him.  He said to watch her in the next couple days and if it gets worse he'll admit her.  Ruby has been 100% tube fed the past 3 days.  She refuses the bottle completely and isn't eating much on the solids front.  It just goes to show how "just a cold" is setting us back weeks.

Let's all hope she fights this off and we are through the worst of it.   I know it had to happen sometime but we were hoping for it to be in a few months when she is a bit stronger.   As we've learned it doesn't take much to send her fragile little lungs into a tail spin.

Plus it's just really scary as a parent.  With a CDH baby we have lists of things to look for and call about.  Some days it's easier than others to check those things off.  We don't really ever get to let our guard down.  Chris and I are her first line of defense against things.  We've got a few long days and nights of listening to her lungs, counting breaths, and checking for retracting ahead of us.

We are happy that our Docs here are taking this seriously.  This is just a reminder of how far we've come and just far we left to go.

Demeanor wise she is a little less happy than normal.  She still plays with her toys and the cats.  She's been taking longer naps and gets upset relatively easy.  She even gave the Doc. a big grin this morning when he asked her is she was sick.  We're taking this as a good sign.

I'll post an update tomorrow FROM HOME.  That's a little positive thinking thrown in for good measure.

It's really cold in Austin.  Not Texas cold, but cold.  This Midwestern girl is even cold, seriously.  We've had lows in the teens and highs in the 30's.  Crazy.  I do think it's funny to sit back watch all the Southerners freak out about the "arctic blast".

Chris and Ruby are both sick.  With you guessed it a cold.  Thankfully Chris  is a little worse for the wear than Ruby.  Ruby is just snotty and cranky.  I'm hoping that all the problems we had last week were leading to this cold and not reherniation.  I'm not happy she has a cold but I'll take it over surgery.  She's really really snotty.  For those CDH parents who miss the suction capabilities of the NICU we found something almost as good for clearing out Ruby's nose.  Don't laugh, but really and truly works!  The Nosefrida has been life saver at our house the past 24 hours.  They have them at Whole Foods and Amazon. 

Ruby kept waking up in the middle of night last night gagging on all the drainage.  So I made the decision to let her sleep in our bed mostly so I could roll over and suction her nose out when it got bad.  It made for a more restful night for all of us.  So far her lungs sound clear and the drainage is colorless.  I hope it stays this way.  I'm giving her baby mucinex every 12 hours to help with the drainage.

We head to the pulmonolgist tomorrow for her synagis shots.  Yep shots Ruby's a big girl now and needs one in each leg.  They always put her on the pulse ox for a few minutes even if we aren't seeing Dr. S.  If she's not sating well we'll go from there.  I also plan on taking her in to the Pediatrician, too.  We want to stay on top of this and make sure we catch it  if she makes the slightest turn for the worse.

I'm off to enjoy the arctic weather and go for a run.  Chris and Ruby are both napping soundly.