Ruby Hope McKee Starling

tomorrow we heard the words Congenital Diaphragmatic Hernia for the first time.   We knew something wasn't right, mostly becasue the ultrasound was taking a VERY long time.  When the technician finally told us we were having a girl she followed it with "I'm having trouble visualizing the stomach.  I need to go get the doctor."  Then the doctor walked in and said what no parent wants to hear, "The baby has problems."  That started our CDH journey.

I'm posting this a day early, becasue I have busy week ahead of me.  I'm determined to have Ruby on 5 preschool waiting lists by Christmas.  Although we don't want her to go until she's three, it's necessary to start the process now.  Crazy if you ask me.  The fees to just get on lists are more than I paid for college applications.  Crazy.  We are very happy to be in a place where we are looking at preschools.  A year ago we had just been told that we had a 30-50% of Ruby surviving.

Here are of few pictures from the Holiday Weekend. 

OK internets here is when I come clean.  I HATE making the bed. When I was a kid I always swore that when I was an adult I would NEVER make my bed.  Now I only do it when company is coming.  I would have preferred that Chris make it before he took such cute pictures of Ruby on the bed.  Here's Ruby in her pink sparkly tutu on our unmade bed.

I don't normally buy things that aren't on sale.  The tutu though was full price and in my opinion completely necessary.  No wardrobe is complete without a pink sparkly tutu.  I haven't found her the perfect tiara or cowboy boots yet.  When I find those her stylish baby wardrobe will  truly be complete.

Our good friend Sean used his  photography skills to help us out with our holiday cards this year.  Here's a picture that I didn't use on our card. I don't want to spoil our cards.

It was fun to walk around Congress and pose for pictures.  Ruby loves being out and about.  She loves to smile at everyone who happens to glance at her.  She pulled out her tube as we were getting out of the car. 

Ruby seems to be going through her first bought of separation anxiety.  I will admit I worried she never would.  I wasn't sure how much the fact that we couldn't even hold her much less touch her for the first few weeks of her life would affect her bonding abilities.  So, while it is kinda frustrating that she wants to be with me all the time.  It's reassuring, too.  Chris and I both have moments when she's crying that we stop and stare at her.  Sometimes I just marvel at how loud her cries are getting.  It's a sure sign that her lungs are getting stronger.  We usually snap out of it and realize that she's crying for a reason, not just to show us how loud she can be.

I called and talked to Ruby's pediatrician to get some guidance on the tube weaning.  We will now pull the tube out on Friday night and leave it out until Saturday night or Sunday morning depending on how much she eats.  We are to go weigh her at his office every Monday at lunch time.  This seems to be the best option.  Renting a scale is expensive, 25 dollars a week.  The nurse and I feel that lunch time would be OK and not expose Ruby to much.  I hate bringing her in just for weight checks, but we'll manage.  Her OT will weigh her on Thursdays when she's here.  We will then compare the Thursday to Monday weights to make sure Ruby isn't loosing to much over the weekends.  It will also better track her weight gain during this time.

I also reserved her second and last H1N1 shot for December 9th.  She'll get it at the same time as her synagis at the pulmanologists office.  I will feel so much more at ease once she has this.  I know it's not a guarantee.  It does mean that I don't have to hound all of her Doctors on a daily basis about their supply.  I might even be able to listen to the NPR stories about H1N1 once she gets it.  For now I turn off the radio when one comes on.  No reason to cause ourselves to worry about something that we can't control.

We are planning on hanging out at home most of the weekend.  Chris is replacing some rotted wood on our workshop. Oh, the joys of home ownership.  We're going to a neighbor's 1st birthday party (as long as everyone is healthy) on Saturday.  Other than that we're just going to enjoy our time together as a family.

We hope everyone had a Happy Thanksgiving. 

We are so thankful to be able spend our day with this wiggly bundle of joy.

By looking at that cute face you'd never guess that she pulled out her tube twice this morning. 

If anyone wants to start taking bets on when she starts crawling it's time to start.  The cats better watch out.  Several times in the past couple days Ruby has lunged at the cats while on all fours.  Ella and Bobbi's lives are about to change FOREVER.

Things have been busy around here the past few days.  Chris has been on call and I had one of my longest runs of marathon training.  Couple that with the up coming holiday and it makes for a busy house.

We did another Ruby unplugged day this past weekend.  She pulled out the tube on Friday morning and we just left it out.  Friday wasn't too bad.  She didn't eat much, but that's to be expected.  Saturday she started the day out great.  As the day wore on the more hungry and tired she got the more frustrated she would get.  Finally after dinner we decided to put the tube back in.  We're not supposed to withhold feeds for more than 36 hours and where we were at that point.  She took 13 ounces of milk by mouth on Saturday!  That's exactly 50% of her needed intake.  She took another 4.5 ounces of solids, but those don't count toward her daily caloric intake.  All in all we feel it was another successful weekend.  Ruby worked so hard and we are very proud of her.

We've been working on drinking from a cup with her for the last couple weeks.  She is finally starting to get it!  We have small plastic cups for her to use.  At dinner the other night she was reaching for my water glass and successfully drank from it.  We are just doing water in the cup right now.  Mostly becasue not a lot ends up in her mouth she spills most of it down her front.  Also she associates milk/formula with reflux.  We want cup drinking to be pleasant.  I also wanted to mention that while we do think a messy Ruby during meals is cute, their is a reason we don't "scrape" her face with the spoon or clean her up during meals.  We want her to experience the texture and feel of the food.  We've been instructed to let her get messy and "feel" the food.  So, that's what we do. Plus a little avocado in her ears might do her some good.

We've also found a new way to clean up after meals.  She just loves to kick her feet in the water.

Ruby has learned to love her "command center" as we call it. 

We did go to the plagiocephaly clinic this morning.  We are kinda sad to report that the time has come to put her in a helmet.  We haven't fully decided yet, but it's looking like that is the best option.  We are asking that unless you have experienced everything we have to not tell us how much the helmet "isn't a big deal".  It's one more thing our little girl has to have on her head and quiet frankly we were hoping to avoid it. It is a big deal.  The main reason for getting the helmet is to help even out her ears.  We could continue on the path we are on and hopefully see more improvement.  Getting the helmet with ENSURE improvement.  It's a guarantee.  If we do decide to get the helmet she will get fitted in the next week or two.

We are going to lay low this Thanksgiving.  We had hoped to go to a friends house for dinner, but their little girl has been sick.  Rather than expose Ruby to something we are going to hang out at home.  We hope everyone has a good holiday.  I promise to post more over the holiday!

Chris pointed out I didn't really update on her appointments last week.  With the blood and everything I kinda forgot.  Basically she sounds good.  The pulmanologist doesn't want to see her until the spring or if she has any problems!  He said  she sounds great, for her.  I love that little caveat they put at the end of that statement. 

Ruby has pretty much refused the bottle after the weekend.  As soon as we put the tube in she stopped taking the bottle.  She is however still eating the solids.  infact she's decided that she wants to feed her self.  Rather fight her we just let her make an even bigger mess.  At her next appointment I'm going to ask if we can start finger foods.  Maybe just soft ones that she gum.  I know 9-10 months is usually the time for that.  She just really wants to feed herself.

Here are a couple pictures from our day today.  I did give RUby some tylenol.  She seems to be teething and very cranky about. 

Can we all remember way back in April when I kept saying I'd love to  have Ruby off of ECMO for Mother's day.  Then she came the day before?  Then I would jokingly say I wanted to be home for my birthday.   Ruby's team even discussed the possibility of this in rounds a couple times.  In the back of mind or in my wildest dreams I would think it would great to be off the NG tube by Christmas.  It seemed like an impossible goal.  The feeding thing has really been hard.  It's not as scary as being on ECMO, but it's frustrating.

We had a GREAT weekend!  Ruby pulled out her tube after breakfast yesterday morning (Saturday).  Chris made the decision to leave it out, I was on my long run.  When I got home we decided to go ahead and do another 24 hours of just PO feeds.  With it being the weekend, both of us were home and we could lend each other support.  It's harder than you think to not feed your baby.  In typical Ruby fashion she showed us!  She was a little cranky on Saturday afternoon.  We went to lunch at an Indian Buffet with our neighbors.  This should have been our first clue that Ruby was not messing around.  Our neighbor told us that their 11 month old loves Idli.  Idli is a steamed rice dumpling.  I figured why not, and let Ruby try some.  She ate 4-5 bites of Idli.  I also gave her several "tastes" of my Mango Lassi.  We then tried to give her a bottle and she promptly fell asleep.  We were happy she even ate a small of the idli.  The rest of Saturday went the same way.  She ate very little buy mouth and was cranky.  We did go to the park with TWO sets of twins.  Ruby was happy enough swinging.  She FINALLY got to meet Mason and Ethan!  Mason and Ethan's parents have been through a lot with us.   The day we found out about the CDH I texted their  Mom while I was waiting to have my amnio. 

To make a long story short.  Chris and I decided this morning to not put the tube in until she absolutely needed it.  Which was a really good call.  Ruby drank 130 ml or 4.5 ounces from the bottle this morning. That's the most EVER. She even sucked down her Nexium. The rest of the day was just as good!  We didn't have to put the tube in until this evening when we put her to bed.  For the first time in her entire life Ruby went more than 24 hours WITH NO TUBE helping her eat or breathe!  This is huge!  We are so proud of our little girl.  We know we still have long road to get her off the NG tube, but we are closer than we thought.  Ruby once again showed us that she is ROCK STAR.

Ruby also got to go for a run with Henry this morning.  My friend Natalie  and I used to run together before we had to push little ones in strollers.  We hadn't had a chance to run together since I got back from Philly.  It was so nice to catch up and get my workout in at the same time.  Ruby also got some one on one time with Henry.  It's never to early to start planning a wedding.

Actually both Ruby and Henry were finished with running and had no problem telling us about it.  The last mile Natalie managed to push the stroller, run, and sing them both a song.  "The Wheels on the Stroller" kept everyone calm until we made it back to the car.

This weekend wasn't completely centered around eating.  We also got to take a couple really well deserved naps.

Learning how to eat rocks was another really fun activity. Or least teaching Mom and Dad how fast you can get them into your mouth was a fun activity.

We also pulled out an old key board for Ruby to play with.

This is Ruby saying "I'm trying my hardest to rid of the NG tube!"  It's not my best angle, the whole foot, arm, tongue thins is so darn cute.

We hope everyone had as good a weekend as we did. 

We've had no reappearance of the blood.  Ruby's pediatrician called yesterday morning to check-up on her.  I didn't realize how concerned he had been when we were in his office.  I guess I was just to focused on Ruby.  Plus doctors are pretty good at hiding how alarmed they are sometimes.  That's my experience anyway.  It wouldn't be CDH if didn't get thrown a curve ball every once in a while.

For some updates.  The pulmonolgist doesn't need to see us until the spring!  Woo-Hoo!  That means next month we only have to see the pediatrician and the plastic surgeon.  I'm so happy about this.  The pulmonoligist was really happy about her breath sounds on the left.  He was really pleased with her in general.

I did call CHOP to ask what if anything should be done between now and 1 year.  We've had her hearing tested and a chest x-ray.  Her doctors here suggested we talk to CHOP as they don't much expereince with ECMO babies.  I put a call in to her sugreon but haven't heard back.  I'll give her until Monday and then call again.  What did other CDH/ECMO babies have tested during this time?  Not being near a hospital that routinely deals with ECMO makes me nervous that we could miss something. 

Ruby is getting increasingly hard to photograph as she is ALWAYS moving now.  She's started to lunge at things while on her tummy.  I think we are really close to crawling.  Yesterday at the park she even tried to put rocks in her MOUTH.  She was quick and sneaky about it.  If only she would do that with food.  We even did tummy time on the pea gravel.  That's when she tried to crawl after one of the other babies on the play ground.  I did have to be kinda mean to a little boy yesterday.  He was about 5 and he REALLY wanted to be Ruby's friend.  I felt bad as the little boy was so sweet.  He wanted to help push her on the swing.  We do have to be careful. I  always  ways keep her out of sneezing range while at the park.  Plus she LOVES to see other kids.  Even older kids. She love to watch our neighbor kids play and run around.

Here is a not so good pictures of Ruby and Chris on his birthday.  I couldn't get them to both smile at the same time.  Plus I had to fight with the ceiling fan for attention.

We've had no more blood since yesterday morning.  The prevailing thought is that her tube irritated her throat.  In typical Ruby fashion she laughed and smiled at her Doctors yesterday while I tried to explain that something might be horribly wrong.   It's hard to convince people she spit up blood when she giggles when having her stomach touched.  So, for now we'll just keep an eye on her.

Yesterday was Chris's Birthday.  We got a sitter (Becky you are awesome!) and went to dinner with friends.  Chris really wanted to try Franks, a new hot dog place downtown.  It was a fun and a much needed night out with our friends. Having Becky babysit was so nice.  I figured if Ruby spit up again a Nurse would know what to do better than I.

I'm hoping for a nice calm day today.  After yesterday, I think we all deserve it.  In all the craziness yesterday I forgot to take pictures.  Here is one from this weekend.  I will also give a full update on all her check-ups later today, too.

I am great need of a nap.  i wanted do a quick post. 

Ruby spitup some blood this morning.  It was as were leaving for her Pulmonolgist appointment.  Long story short as I've been up since 4:00am and have 8 miles on my tired legs.  It's not resiparatory.  The GI doctor said he wouldn't worry unless it happened again.  He pediatrician was inclined to side with the other two specialists.  So we will wait and see.  Ruby is happy.  She giggled at her pulmonologist  less than a half an hour after the blood tinged spit-up.

We've been here before.  Wait and see.  Have mentioned before how much I hate waiting?

On a good note Ruby weighs 14lbs 2 oz and is 24.5 inches long.  She looks good.  Her lungs sound good.