Ruby Hope McKee Starling

We had our last check-up with Ruby's surgeon yesterday.  She said she looks really good.  Her incision is still rehealing.  She has developed granuloma, which from what I understand is a bubble of scar tissue.  The doctor "burned" it off just like you would with a wort.  She also said that we will start weaning Ruby off of some of her meds.  Basically they won't weight adjust them anymore and she will eventually out grow them.  Unless of course she needs them.  She's taking Diarel, KCL, Prilosec, and vitamins.  The Diarel and KCl are to help keep her lungs dry.  If she starts loosing ground on the PO feeds and breathing harder consistently we will know she needs more of both.  Prilosec is for the acid reflux.  I think the Prilosec needs to be weight adjusted.  The past couple days she has been spitting up more.  We have an appointment with her Pediatrician on Friday to discuss these things. 

It was very hard to say goodbye to everyone at CHOP yesterday.  All of the Doctors, Nurses, Respiratory Therapists, Clerks, and Environmental Services Workers all played a major roll in Ruby's success.   The OB's, MFM's, and midwives of the SDU deserve our thanks also. Words can't express just how thankful we are.  With out them we wouldn't be bringing Ruby home.  Her surgeon gave us hugs and told us to call her anytime we had concerns.  She said "Ruby is a very special little girl."  She even called our pediatrician in Austin just to tell him "How special Ruby is." 

After we made the rounds at CHOP we took Ruby for a walk on Penn's campus.  There is a Turtle pond that Chris and I would visit sometimes to get out of the hospital.  Each time we went we talk about how nice it would be when  we got to bring Ruby to see the turtles.  Even on days when Ruby wasn't doing so good and it was hard to have hope, we talked about bringing her to see the Turtles.  We would even tell her about all the turtles.  Finally yesterday we got to show Ruby the turtles.  She slept through most of the visit.  It made Chris and I very happy to be share the place with her even if she didn't realize she was there.

We also got her picture next one very famous American.

We fly back to Austin tomorrow afternoon.  It's hard to believe we're actually taking our little girl home.  Five months ago Chris and I left home with the  intention to do everything we could to save our daughter's life.  We were scared and nervous about our decision to leave home in search of the best medical care in the world.  We didn't want to have any regrets.  Thanks to our friends at CHOP, we don't have any.

Stay tuned for Ruby's Texas debut!

We had a nice weekend.  In between getting ready to go home we managed a couple really fun outings. The most important of which was the Jersey Shore!  Ben and Nicole's parents very generously let us crash their vacation for the day. 

The day was filled with fun, sand, and good food.  After dinner we all went for a walk and got ice cream.  The other kids were totally enamored with Ruby.  It was almost like a parade with Ruby in lead.  Once the ice cream was dispersed Ruby got to have her picture taken in front the flowers.

Ruby had blood work drawn this morning and handled it like a pro.  She was more upset about being held down than actually getting stuck.  We see her surgeon for last check-up tomorrow.  Her incision doesn't look as good as I'd like so we'll just have to see what the Dr. says. 

Right now a certain little girl is fighting a nap.  It's time to go see if I can't her settled down.

Ruby has been out in the real world for over a week now.  She's doing great.  She's able told her head up more.  She's even tolerating tummy time a bit better.  She's also treated her parents to several blow-out diapers, spitting up, and the ever popular pulling out of the NG tube, which she did three times yesterday.  Here she is all proud of herself for pulling it out:

 You can see how far down into her tummy it actually goes!  (The blunt end goes into her tummy, the end with the bright yellow cap is where we inject the milk).

The NG tube is a necessary thing.  It's the reason she is gaining weight.  We are working on PO (by mouth) feeding her.  We try at all the feeds except midnight, 3am, and 6am.  Mostly because she is asleep for those feeds.  She sleeps from 10pm to 8 am all on her own.  Please don't tell her how wonderful this is, she might decide to stop.  With each feed she takes any where from 15-35ml by mouth.  We then have to give her the rest of the 80ml through the tube.  We can't get rid of the tube until she is taking ALL of her feeds by mouth.  Right now that seems almost impossible.  She is getting better though.  It used to be that we had to stop a PO feed becasue she was breathing too hard.  Now she just seems to get bored with it.  She will even fall asleep and then miraculously wake up giggling 5 minutes later when the milk is going through the tube.  She's a smart one.   She is doing great for a baby who was intubated and on ECMO for as long as she was.  In fact, she's ahead of the curve in that respect.  As a family we'll keep working on the PO feeds.  At least this is a problem that Chris and I can directly help with.

She is also rolling and scooting around a lot.  We can put her in her crib in one position and wake-up to find her on the other side on her tummy.  She has also started rolling and reaching for her pacifier when she wants it.  She can even grab it.  She doesn't always get the right part in her mouth, but she tries.  She has found her thumb, too.  In fact, she loves to suck on her hands VERY loudly.  It's one way to tell she's awake in the morning.  She is also talking a lot more.  Chris and I set her in her bouncy seat while we eat dinner.  She will babble and smile with us while we eat. 

We've got a busy weekend planned!  We're going to "The Shore"  as the locals call it.  It will also hopefully be our last weekend in Philadelphia.

It's time for   the post that I have been dreading writing.  It's a post in which I have to be mean, but for a VERY good reason.

Ruby is out of the hospital.  She is stable and and pretty darn close to healthy.  As close to healthy as baby who spent 26 days on ECMO can be. That being said we have to be careful about Ruby getting sick.  We have to VERY careful.  A simple cold could put her right back in the hospital.  She does not have two full lungs and the lung tissue she has isn't as healthy as regular baby. 

We want everyone to meet her.  Just be prepared to not be able to touch her with out me squirting hand sanitizer all over you.  That's if you are healthy, if you have been sick all bets are off.  I might let you with in 50 feet of her.  As for other children, it's a strict look but don't touch rule especially children who go to school or day care.   I will ask if your child has been sick before we accept an invitation.  This winter during cold and flu season Ruby won't be able to make too many public appearances.  We've been told outside open air gathering and no touching.  These are doctors orders.

We love our friends and family but we all want Ruby to grow up happy and healthy.  This all might seem like we are being over protective or unreasonable.  We don't want to be this way.  We have to be this way.

We will hopefully be back in Austin late next week.  We have a round of blood work and another check-up before we leave.  We can't wait to see everyone.  It's going to be so much fun showing Ruby off with out getting her sick.

I don't ever want to be told "Your baby is the sickest baby in the hospital" ever again.  We need everyone's help and understanding in order to make that happen.

Ruby's appointment  was at 9am this morning.  It went well, her surgeon doesn't seem worried about her incision.  In fact she wasn't even phased by it.  I of course will continue to worry, becasue that's what I do. 

After Ruby's appointment we went and visited everyone in the SDU.  Then we headed down to the NICU.  We finally got out of the hospital by 12:30.  it's amazing how many people we know at CHOP.  We even got to see of the environmantal services workers who cleaned Ruby's room.  it's going to be hard to say goodbye next week.

Now for the best news of the day.  Ruby weighs 9lbs 15oz!  When we left the NICU last week she was just over 9lbs. Apparently laying around our apartment doing nothing but giggling and eating has been good for her.  Take a look at that double chin!

As for her NG tube she has pulled it out twice today.  Maybe her frustrations with it will transfer over to better PO feeds. She has figured out how good her hands taste.

We've had a nice relaxing weekend just getting settled as a family.  It's been a weekend full of naps and visiting friends.

Ben and Nicole would come and visit us with their parents at CHOP.  Due to NICU rules they couldn't come back and actually get to see Ruby.  On Thursday they got to meet Ruby for the first time.  It was our pleasure to let two of her biggest supporters finally meet her.

Nicole and Ben also got a lesson how to check Ruby's residual and pH.

Then Chris and Ruby shared a nap on Saturday afternoon.

Then we got all dressed up to see Rachel, Quinn, Cindy, and David.

During our visit Ruby got to meet her first dog, Willa.

Tomorrow Ruby has a check-up with her surgeon.  I'm anxious for the Dr. to see her incision.  It's still a little red and draining fluid.  It doesn't seem to bother Ruby at all.  She  doesn't have a fever and you can poke at the area and she giggles.   We've been taking pictures of it everyday and it is slowly looking better. I'm afraid this might be another one of those "only time will tell" things.  If this experience has taught me one thing it's that I hate the words "if there is a problem it will present itself" or "Ruby will tell us what she needs".  Some days it's hard to sit back and wait for the problems to present themselves.  I'm all  for taking preventative measures.  Medicine isn't an exact science and that's hard to accept at times.

To end, here's a picture of Ruby letting us know how happy she is to have to have pulled out her NG tube.  Hopefully one day soon we'll be rid of the NG tube.  She's is slowly but surely getting better at taking the bottle.

The past couple days have been great having Ruby in our apartment with us.  It's hard given some of her special medical needs, but worth it.  We've just about got our routine down.  Ruby has managed to keep us on our toes.  Yesterday during her 6am feed she decided to pull out her ng tube.  Chris and I had fumble around to clamp off the tube so milk wouldn't get into her lungs.  Since she pulled out the tube, we  had to one back in.  It was quite a way to start the day.  All in all Ruby is a pretty easy going baby.  She lets her opinion be known, but for the most part she's content to play with her hands.

Now for an update on the one thing that keep us here Philadelphia. Ruby's repair incision was looking slightly better yesterday morning, but it was draining fluid.  I decided to go ahead and call her surgeon's clinic and try to talk to a nurse.  I didn't want to go into the weekend without having someone look at it.  I hate having to call the after hours services.  I figured I'd be able to push things more on Friday afternoon then at 10pm on a Saturday night.  Our surgeon was out of the office yesterday, but the Nurse Practitioner spoke to her.  The NP had me bring Ruby so she could take a look at what was going on.  Good news is that the NP thinks it's just some stitches working their way out.   Which is what the surgeon and neonatologist said on Monday before we were discharged. On Monday the site wasn't draining fluid, so I was getting concerned. The NP gave Ruby a script for Septra.   I wouldn't be so concerned if Ruby didn't have a gortex patch in her diaphram. While we waited for the script to be filled we stopped by the NICU for a visit.  Although we just left Monday, I though it would be nice to see some her nurses and ECMO specialists.  Plus it was hard to be at CHOP and not say hi to all the people who helped Ruby.

The only true headache of bringing Ruby home has been dealing with the medical supply company.  They didn't send half of what we needed, and what they did send was ment for adults.  The feed bags we got hold 1liter of fluid, Ruby gets 80ml.  Luckily her nurses sent us home with more than enough supplies.  I'm hoping that once we get to Texas I can switch supply companies.

Here's a picture of a very happy Ruby.

I made it three days before I called the Nurse Practitioners at the NICU.  All in all Ruby is doing great.  Her repair incision is not looking so good at one end.  It's the same thing that set off the last infection scare, that her beloved surgeon kept reassureing me that we were over treating.  This morning it started draining some  clear fluid.  I called and  the NP said to just put basitracin and a bandaid on it and if it gets redder to call again in the morning.  That's what we did.  I did resist the urge ask the NP to move in with us.  Ruby is showing no other signs of infection.  No fever.  She's awake and happy for the appropriate amount of time.  We'll just have to see how things look in the morning and go from there.

We've been slowly figuring out more things that Ruby likes and how accommodate her NGfeeds.  As you can see in the picture below I might have found a way to be mobile while she is eating.

Ruby and I decided to stay in PJ's all day today.  Since we didn't really get to lounge around the house the first couple days after she was born, we're doing it now.  We've had fun day of naps and play time. 

We are going to dinner at some freind's  house tonight.  We're looking forward to our first outing as a family.  I'm betting it takes us at least 2 hours to get out the door  :)

The first day went really well.  Ruby hardly seemed phased by it.  Her PO feeds were not as great, but other than that she did wonderfully.  We were told to expect her to take a couple days to adjust to not being in the NICU.  Chris and I seem to have worked out a schedule of who does what and when.  The middle of the night feeds are a necessary evil.  Lucky for us Ruby sleeps through the night.  The 3am feeding is really easy simply becasue we don't have to wake her up for it.  Once she is twice her birth weight we'll be able to eliminate the 3am feeding.  Until then I'll be getting up  during the week, on the weekends I'll hand the pleasure over to Chris.  I can take a nap during the day, so it's only fair that I wake up in the middle of the night.

After our nap we had some tummy time.

We took Ruby for a walk last night at The John Heinz Wildlife Refuge.  She seemed to enjoy herself so much that she fell asleep on the walk back to the apartment.

After our walk it was bath and bed time.

We have our nurse visit this morning and after that our day will be filled with eating and diaper changes.  Just as it should be.

Three months ago today Ruby was put on ECMO.  Today she was dicharged from the NICU.

Ruby's Medical File.

Ruby with no wires or leads!

Ready to leave the NICU.

Walking out of the unti!

SUNLIGHT for the very first time!

Riding in the car.

Today was the day we have been waiting for, for a very very long time.  Chris and I are beyond thrilled.  It was hard to say goodbye to all of Ruby's Doctors, Nurses, and ECMO Specialists.  Each and everyone of them helped make today possible.

So far Ruby is getting settling in while Chris and I are in process of drawing straws for the 3am feeding.