Ruby Hope McKee Starling

I love it when Ruby first wakes up in the morning.  She usually wakes around 7 or 8 am.  She plays quietly in her crib until we realize she's awake.  It so much fun to sneake in.  When she gets her first look at Chris or I she's smiles and kicks her legs.  It's a wonderful way to start the day.

I know it's kinda blurry, but I didn't want to turn on the overhead light.  Ruby HATES bright lights.

I wanted to give an update on some of our CDH buddies.  Jamie has had his second repair surgery.  He isn't having the best time post-op. He's turned that awful blue color and coded a couple times.    He's such a little fighter and we hope he has a good day today.

Baby Andrew is having trouble coming off of ECMO.  We were in the same place 6 short months ago.  Please keep him your thoughts.

Check back tomorrow for Halloween Photos!

First off I'd like to mention that we haven't gotten our H1N1 vaccines yet.  I keep calling her pediatrician's office everyday and asking them if they have it yet.  She is high risk and I could call the State Health Department, but I don't want to bring her to a public clinic to get it. We don't go out much so I'm not too worried.  I will feel better once we all are vaccinated.  I know it's kinda controversial, but we've decided the benefits outweigh the risks. 

We had a good day yesterday.  We got to meet our new Occupational Therapist.  I have to admit I am loving the home based therapies.  The convienience factor is huge, but also Ruby is in her element.  The feeding session went really well yesterday.   It's interesting to talk to an OT who does feeding issues.  She seemed to focus more on stimulation than our Speech Therapist.  Our ST seemed to focus  more on tongue placement and the workings of her mouth.  We'll see how the new therapist goes.  We can always switch back to going to Dell every week. 

The OT did say that Ruby was extremely bright.  I find it funny that people tell us that.  A couple of her doctors at CHOP would tell us how smart she is.  My first thought when someone says this is "She's 6 months old."  How can they tell?  To me she's just Ruby.  After everything we've been through I don't need her to be smart.  We just want her to be healthy and happy.  It is nice to hear that we might have a budding genius or something.  Then again don't all parents think they have the smartest child in the world?

Now the best news of the week.  Ruby ate ALL of her sweet potatoes and avocado for dinner last night!  It was half an ice cube of sweet potatoes and half an ice cube of avocado.  She LOVES the homemade baby food.  She's been consistently eating more of the stuff I make at home.  I personally think it tastes better.  Here's the proof that she ate it ALL!

Here's Ruby letting me know how much she LOVES her dinner.

Here's Ruby letting me know she's "All Done".  I asked her if she wanted more while doing the sign for more.

One last picture.  This is what happens when you turn on the ceiling fan.  I wonder what she'll do when she realizes we can control speed and direction of the fans.

I just wanted to give everyone a quick update about our visit to the Crano-facial Surgeon yesterday.  Actually we have never met the Surgeon.  We just see the Nurse Practitioner at the Plagiocephaly Clinic.  I'm fine with that.  It's kinda nice to not need the most expert opinion in town for something. 

Ruby has made great progress as far as the flat spot on her head.  It's starting to round out.  So, we are going to continue with PT for another month and see how much more improvement happens.  If in four weeks she is still showing improvement we just might avoid a helmet.  Not to toot our own horn, but I'm happy that all of the hard work Chris and I have been doing with Ruby might pay off.  We have worked very hard with her on her exercises and stretches to keep her out of a helmet.  It's so nice to be able to help her avoid something.  So much of this we've just had to sit and her hold her hand.

Ruby finally got to swing at the park yesterday!  A new family moved in down the street with a little girl who is 4 months older than Ruby.  Her mom invited Ruby and I for a walk to the park.  Ruby loves to see other babies, and it's nice to be able to let her socialize with out the risk of getting sick.  I forgot the camera so I had use my phone for the picture.

Ruby watched Maddie intently the whole time!  It was so cute.  Ruby  handled the swing for 5 minutes and then decided she was tired of it.  She did like touching the rocks with her feet.  We've been working on tactile stimulation of her feet.  She hates having her feet touched and putting pressure on them.  She LOVED the feel of the rocks on her feet.  It was kinda weird actually.  She even cried when I picked her up to put her back into the stroller.  She didn't want to stop playing with the rocks. 

She also cried when we went inside after our walk.  She was really fussy until I took her back outside.  I ended up letting her play on a blanket in the yard while I hung up the Halloween decorations.  She is really starting to try to communicate what she wants.  I'll take crying any day over dropping oxygen saturation and a high heart rate as a form of communication.

On the the topic of communication. We've been working on sign language with Ruby.  Just a few signs milk, more, all done, hungry, eat, and play.  Most of the signs have to do with meal time.  We're hoping that giving her the tools to communicate earlier as far as feeding goes will help her feel more in control.  Just recently she's started mimicking me when I sign and ask her if she wants some milk.    She is at the age that she could start signing.  

Tha's it for the mid-week Ruby news.

Our roof is done!  The roofers worked really fast and finished by 4pm on Friday.  They did however forget to put a planter back where it belonged.  I pulled into the driveway and didn't see it.  It was in just the right place to be out of my view, plus I'm not used to things BLOCKING the garage door.  So, we'll be getting a new bumper.

Not the best way to start off the weekend.

Ruby did decide that she can hold the bottle on her own.  She still doesn't take that much, but she insists on holding it. Our girl knows what she wants, that's for sure.

We had a busy weekend and naps were not Ruby's priority.  She got thrown off by all the noise on Friday and we never really got back on schedule.  I'm hoping today things will get back to "normal".  I don't even want normal, I'd just like to take at least one nap longer than 30 minutes.  On Saturday she took one 30 minute nap.  I also have a feeling she's starting to teeth.  The amount of drooling and chewing has increased.  One good thing is her diaper rash has cleared up.  We put lotrimin on it, and that did the trick.

The weather has been great here lately.  We took advantage of it on Saturday and went to a birthday party for a friend.  Since it was nice out and we knew we could hang out outside. We felt comfortable bringing her.  It was nice for Mom and Dad to get to socialize a bit, too.  Then yesterday Tim and Rhonda came over for dinner.  Ruby got watch her first Cowboy's game with Tim.  Tim was our house sitter while we were Philadelphia.  So, even though Chris and I aren't football fans we let Tim choose which team Ruby should root for.  We dressed her up in her Cowboy's onesie and socks so she could properly cheer.  We also had the added bonus of celebrating Time and Rhonda's engagement!

 Ruby seems to benefit from seeing other babies.  On Friday we had play date with my friend's twins who are one.  Every time Ruby visits Alice and Steven she wants to sit up.  I'm thinking seeing other babies up and moving gets her motivated.  Just yesterday when she started trying to stand when you try to set her down.  More than once she stuck her feet out and wanted to stand and bounce.  I wish we could expose her more babies her age, but her lung status prevents that.  We do let her see other babies who don't go to day care and haven't been sick.  Even then we don 't do that much. 

We've got a busy week this week.  We go to the Plagiocephaly Clinic tomorrow morning.  Hopefully they'll tell us Ruby doesn't need helmet.  We see the GI Doc on Friday.  Grandpa and Grandma Starling are coming to visit this weekend, too.  We've also got to prepare for Halloween.  I've already got her costume and the candy has been bought.  I just need to get some decorations up and carve our pumpkins.  Halloween is one of my favorite holidays.  I'm really looking forward to celebrating it with Ruby. 

I'll leave you with some more cuteness.

It's very early.  I woke up at 4 am with intention of getting my run before Ruby woke-up.  The thunder and lightening has prevented that.  I've proof read this entry 4 times now and keep finding more mistakes. Please pardon any run on sentences and grammar mistakes.  My alarm went off at 4am.  I'm going to leave it as is and try to nap before Ruby gets up.  Ruby will be joining me for my 7 miles later today.  I hate to make her sit in the stroller for much more than 4 miles.  Hopefully she'll take a nice mid-morning nap and I'll get my mileage in.

This is Ruby's "I'm only smiling so you'll take the picture and leave me alone" smile.  We've had a good week at our house.  Ruby's eating has picked up a bit as long as it's avocado, oatmeal, peas, or sweet potatoes. Anything else including the bottle is a battle.   I'm amazed at how much she loves avocado.  She bounces in her chair and licks her lips when I give it to her.  I've been making most of her baby food this week.  The food processor is working over time!  I've got plenty of pears and avocado ready to go in the freezer.  She seems to like the homemade pears better than the jarred ones.

I have a feeling today is going to be a long and loud day.  While we were in Philadelphia awaiting Ruby's arrival, two really bad hail storms hit our house.  I guess no one told the weatherman that we weren't home and that our daughter was going to be born really sick.  As a result we need a new roof.  With the recent rain we've even had some leaks.  Not fun.  The roofers showed up at 7:15 this morning and got started right away.  Ruby is amazed by the sounds and has been staring at the roof all morning.  I have a feeling naps might not happen today.  I see a long walk in our future.  We do have a play date this afternoon, so that will get us out for a bit.  I even got up early and baked two dozen muffins for the roofers.  I figured warm muffins might put me on their good side.  It can't hurt right?  I did let Chris have 3 or  4 of the muffins.  The cats on the other hand are not too pleased with the roofers.

We have a check-up with the Cranio-facial Surgeon on Tuesday morning.   We are really hoping they will tell us Ruby doesn't need a helmet.  Chris and I have been working really hard with her on tummy time and stretching.  She's had so many things taped to her in her short life.  I hate to make endure one more thing uncomfortable thing.  I think her looks much better and hopefully the Doctor will too.

We've been battling a really bad case of diaper rash the past couple weeks.  It started when we tried to change her formula and she got diarrhea. Finally yesterday I resorted to disposable diapers, triple paste, and middle of the night diaper changes. We can only use water based creams with the cloth diapers. None of our usual tricks have been working.  Usually if her bottom looks a little red we just have some naked baby time and it clears it up.  This time that didn't work.  We even tried the NICU trick of using the 3M barrier stuff we use to protect her face from the duoderm and that didn't work.  It got to the point that she would cry as soon as her diaper was dirty.  Ruby doesn't cry, so when she does we know it's bad.  It's looking better this morning, but not great.  I'm afriad she might have some yeast growing, too.  I've been holding off calling the pediatrician.  Mostly becasue I hate to bring her in just for diaper rash and expose her to other sick kids.  Maybe he can perscribe something over the phone.  I'm still not used to dealing with normal baby things.  Sometimes Chris and I have a hard time thinking things like diaper rash are a big deal.  Then it gets to the point that Ruby's uncomfortable and we realize that diaper rash should be a big deal.  It's kinda funny how we still haven't switched gears.  I'm beginning to wonder if we ever will.

We've got a busy weekend full of birthday parties, running, and friends ahead of us this weekend.  I promise lots of pictures!

The hunger experiment failed.  In fact she seemed happier.  I'm guessing that is due to the lack of reflux since she had nothing her stomach.  She did eat a tiny bit more solids, but her intake yesterday was 6 ounces.  She needs 24 ounces per day.  She took the same amount yesterday by mouth as she does normally.  Making her hungry didn't seem to matter.  She woke up at 3am last night and took half an ounce, but really that was the only different thing.  She didn't even act hungry.  We'll give it a try again in a couple days. We need to let her catch up a bit from only getting quarter of her calories yesterday.  I'm guessing the only thing  we learned from this little experiment is that we are no where near ready to come off the tube.  Which is a hard fact for Mom and Dad to deal with.  It's not like signing permission to put her on ECMO, but it's still a hard thing to deal with.

We have our first home PT session today.  Our names finally came up on the waiting list.  I am so happy about this.  I LOVE our therapists at Dell, but I hate taking Ruby to the Children's  Hospital once a week.  Hopefully we'll love the new therapists just as much.

To answer some questions.  We switched from Prilosec to Prevacid, becasue we didn't want to pay the compounding fees anymore.  Our insurance doesn't pay for compounding.  Prilosec has to be compounded every two weeks and was costing us about 100 dollars a month.  Add in co-pays to see all the doctors every month and we were spending over 400 dollars a month on co-pays and compounding fees.  She's off the diuril and potassium chloride, so we don't have to those compounded anymore.  We were just looking for ways to save some money AND keep her healthy.  The Nexium seems to be the best of both worlds.  It's not clogging the tube and we don't have to pay to have it compounded.  Chris and I have been lucky in that we have good health insurance.  We haven't had to make any decisions based on money so far and we want to continue to do that.  We do want to be able for me to continue to stay home with Ruby.  I love being a chemist, but I love being a stay at home Mom more. 

Here's Ruby saying more peas please.  It seems she likes food more than the bottle, but she doesn't eat enough for it to matter.  it's just less of a fight for her to take it.  She also hates being fed.  She only wants to feed herself.  She's never been shy about "telling us what she needs" I don't see why this would be any different.

This one is from this weekend.  Ruby had so much fun watching all the runners at " The Rock".

It is FINALLY fall here.  We've had highs in the 70's all weekend.  Friday was even in the 60's!  We've done our best to take advantage of the weather. 

Before I go into the weekend I'd like to announce that we have been off the Diuril and Potassium Chloride since Monday and Ruby is doing great.  This is so nice.  It means respiratory wise her lungs can handle it.  It also means we can play around with her feeding schedule and allow her to get hungry.  Tomorrow is going to be a big day in that respect.  Both her peadiiatrician and GI docotor have suggested we let her get REALLY hungry.  So tomorrow we are only going to feed her what she will eat by mouth and see how it goes.  I reserve the right to cancel this little experiment if things get out of hand.  It will be nice to see how much she eats when she is hungry.

Now for the busy weekend.

Friday morning since it was so nice I decided to take Ruby for a walk. We headed over to our neighborhood park with hopes of swinging on the swings (I had clorox wipes to wipe them down.) The swinging got put on hold when Ruby fell asleep during the 5 minute walk to the park.  I did however take pictures our little adventure.

After the nap and walk we had some play time.

Friday was a rough day reflux wise.  After Friday we decided to switch Ruby from Prevacid to Nexium.  Prevacid came in a pill that we would dissolve in water then give it through the NG tube.  The actual medicine part of the pill are little orange balls. We were having trouble with the these balls clogging up her tube.  The Nexium is a powder and completely dissolves in water.  It's much to easier to give through her NG tube. Ruby's reflux is getting better, but we still have good and bad days.  We're all getting used to it.  Chris and I are both getting really good at catching all the vomit in a burp cloth.  We will go days without any problems and we'll have a bad one for no reason.  We've been told this normal.

Ruby required 3-4 wardrobe changes on Friday, due to reflex. Which is kinda nice since she has so many cute clothes.  I did strip her down to her diaper for lunch.  There is only a short time in ones life that it's socially acceptable to eat lunch in your underwear while pooping.  We've also started giving Ruby teething bisuits and she really likes to chew on them.  She doesn't have any teeth yet, but she starting to show signs of teething.

After lunch we had another nap.  This time in her Dad's favorite onesie.

After her mid-afternoon bottle we needed yet another outfit.  Are you keeping track?  This is outfit number 3 for Friday.

Friday night Chris and I got to go to movie.  Our awesome babysitter Becky watched Ruby so Chris and I could get out for a bit.  I forgot to get a picture of Ruby and Becky.

Saturday Ruby had a nice a day with Chris.  Saturday mornings I run my long run of the week and am gone most of the morning.  We did make some time for playing ball in the afternoon.  Ruby is going to be the next Mia Ham.

Then today we took Ruby down to The Lady Bird Lake Hike and Bike Trail.  I did my recovery run while Chris and Ruby took a walk.

We followed that up with lunch on Whole Food's patio.  Ruby seemed really happy to be out and about.  She loves to people watch.  Luckily we have a mild enough winter that we should be able to take to outside things all winter.  I can't imagine how hard the cold and flu season would be if we couldn't even go outside.

We hope everyone had a nice weekend. 

Little Jaime Trost, one of Ruby's CDH friend's, is having surgery tomorrow.  He re-herniated.  Please keep him in your thoughts tomorrow.

October 15th is Pregnancy and Infant loss Remembrance Day.  Chris and I will be lighting a candle this evening in remembrance to the three little ones we lost.  We are very thankful that we can light the candle this evening with Ruby. 

If you have a chance this evening, light a candle.  Little babies who don't make it are only here for a short while.  Often the only people who meet them are their parents, nurses and doctors.  Those children did exist.  Their parents miss them dearly.  Maybe instead of just lighting a candle call a loved one who has lost someone. Ask them about their child.  Let them talk about their baby or pregnancy.  Help them keep their baby's memory alive.

Here is our 6 month old CDH ROCK STAR!

Tomorrow is day of life 188.  That means we will have been home the same number of days Ruby spent in the hospital!  94 days ago we walked out of the NICU doors.

Sorry I haven't updated.  We had a busy weekend.  Grandpa and Grandma Starling came to visit.  They stayed with Ruby while Chris and I went to a wedding.  Then yesterday morning I woke-up with a horrible sinus infection.  I got some antibiotics and will hopefully be feeling better soon. Caring for a baby when you feel like your head is going to explode is no simple task.  Chris's allergies have been horrible, also.  Never a dull moment around here.

Ruby saw her pulmonologist yesterday morning.  He said her chest x-ray looked great.  Her diaphragm looks good and everything is where it should be.  We kinda new this already.  Ruby's Speech Therapist let me accidentally read the report over her shoulder when she looked up the results of the swallow study.  I understand why they have rules, but I also would never tell the Doctor what a nurse or therapist said.  I understand enough to know that the Doctor is the expert.  The pulmonologist just kept exclaiming "She looks so good!"  We also decided to try coming off the diuretic again.  Ruby weighs 4 more pounds than she did when we tried in August.  Plus not having medicine tied to feedings will hopefully help us get off the NG tube.  Ruby also received her first Synagis Shot.  This is a medicine that will help fight off RSV if she gets it.  It's not a vaccine.  It's only given to preemies or babies with congenital heart and lung problems.  I was reminded by the nurse and doctor that our goal this winter isn't so much to keep her from getting sick as it is to keep her out of the hospital.  I don't know about other CDH parents, but my goal is to definitely to keep her from getting sick.  

We now have 3 weeks before the 7 month check-ups start.  I'm really looking forward to just having Speech and Physical therapy for a couple weeks.   

On the food front.  Ruby's intake has stayed the same.  She's consistently taking 20-30 ml from each bottle.  it's hard to tell how much of the solids she's actually swallowing.  We also let her try some turkey and chicken.  So far she loves turkey and doesn't really care for chicken.  She also hates bananas almost as much as apples.  Sweet potatoes, pears, squash, and peas seem to be her favorites.  If she shows us signs of not liking something we don't offer it more than three times.  She's got such bad oral aversion and we need to keep eating a positive experience.

Our friend Kim and our neighbor's The Butler's had this onesie made for Ruby.  It took her 6 months to grow into it!

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Hopefully I'll be feeling enough to take some pictures tomorrow.  That's a lot more fun than folding the laundry that has piled up since Grandma left.

Yesterday morning started out kinda rough.  Ruby woke-up at 4am with a blow out diaper.  I run at 5:30 am and missed out on my last half hour of sleep.  Thankfully she went back to sleep in her swing next her sleeping Daddy.  In my early morning rush I didn't notice that she had poop in her hair.  Once I got back from my run Ruby got a bath and we to had rush out the door for her hearing  test.  During the craziness known as getting Ruby in the car my wallet fell out of my purse. To make a long story short the nice girl at Starbucks gave me a free Latte and Chris had to meet us at the ENT's office.   Never a dull moment.

Ruby had her 6 month hearing test yesterday.  She'll get it tested every 6 months until she is three.  ECMO and CDH babies have a higher risk of hearing loss.  No one really knows why, but they do.  It can be progressive, so we will continue to test and hopefully if she has any problems we can catch it early.  Our pediatrician sent us to an ENT to get her hearing test done.  So, we got to add yet another specialist to our list.  We saw the Nurse Practitioner at the ENT's office.  She was great.  She kept telling us how Ruby was the best looking ECMO baby she'd ever seen.  There isn't an ECMO in Austin and I'm not sure where the NP did her training even if she hasn't seen a lot of ECMO babies it was nice to hear.  Ruby passed the test with flying colors.  They did warn us that her age is really hard to test.  She's to young to wear head phones and she's to old for the tests they use in the NICU.  I wasn't in the testing booth, Chris was.  From what I understand they basically made sure she was turning her head to the direction her name was being called.  They did this at several different levels.  They tried to test her with beeps, but she pretty much ignores all beeping sounds.  I'm guessing this is from the NICU.  Something was always beeping or alarming the 1st three months of her life.

We have  found a NICU nurse willing to babysit Ruby once or twice a month so Chris and I can get out.  Our friends are more than willing to watch Ruby, but we can only be gone between feedings.  It's a lot to ask of our friends to learn how to drop the tube and deal with feeding her.  Becky, the babysitter, came over last night and met us.  Ruby took to her right away!  I see dinner and a movie in our future!  Realistically it'll be coffee and a walk, due to having to pay a NICU nurse to babysit.  Either way it's a much needed "Date Night."

Ruby has started "talking" a lot more.  We've been working on sign language with her also.  So far we are teaching her more, milk, all done, and play.  She hasn't started making the signs herself but I think she's starting to understand them.  When feeding her if I sign more and she wants more she smiles if she's done she fusses and turns her head.  She's also started saying "MAAAA" when she sees me.  This last thing could be a coincidence, but several times if Chris is putting in the NG tube and she sees me she says it.  She also did it yesterday when Chris walked out of the testing booth and she saw me.  Even if it doesn't mean anything, the fact that she's making sounds and trying to communicate is wonderful.

One last thing before some pictures.  My friend Debbie, just had twins one of which has CDH.  Her and her husband need all the support our CDH community can give right now.  You can see pictures of their beautiful girls on their blog.

Look at that head control!