Ruby Hope McKee Starling

I have some great pictures of Ruby from our weekend.  I'll save them for tomorrow.  Today the world is missing another sweet baby.

Last night we were very sad to hear Ireland Rose lost her fight with CDH.  Her parents followed Ruby's story from the beginning.  They left us many comments and words of encouragement.   Ireland didn't survive coming off of ECMO.  Please keep her family in your thoughts.

It was finally cool enough to take Ruby out on the patio last night.  We got to grill and eat dinner outside.  It has been so hot for so long here.  Ruby gets heat rash pretty quickly so we haven't been taking her outside much.  Last night Chris and Ruby had fun rolling in the grass.  Notice how green the grass is, it actually rained twice in the past couple days!

We noticed last night that Ruby has found her knees, belly button, and feet.  It's so funny to watch her see her feet and get excited about them.  She still can't roll from her tummy to her back on her own.  Developmentally she is doing really well considering every thing she went through.  Some days it's so frustrating because they  don't adjust her age for being on ECMO like they do for preemies.  Even though she is treated "like a preemie a baby" in many ways. She's doing most of the appropriate things for a 4.5 month old.  She has trouble with things involving her head and neck, due to ECMO.  We start PT next week.  I'm curious to hear what her therapist has to say.  Meanwhile we're doing her neck stretches with every diaper change and making sure she gets tummy and bumpo time.

We are hoping for more "cooler"  weather, maybe highs in the upper 90's in the coming days.  We've got some outdoor social engagements  that Ruby's presence has been requested at.

One year ago today we heard Ruby's heart beat for the first time.  I distinctly remember our doctor saying "Wow, we've never made it this far before!"  Ruby's heart beat was 121 bpm, which was just barely in the normal range for 7 weeks gestation.  I had no idea that would be the first of many sleepless nights worrying about her heart rate.  Chris  and I were dealt many many blows on our path to creating our family.  The ultrasound that we heard the heart beat wasn't even our first, we have pictures of Ruby at 6 weeks gestation, too. 

Once she was diagnosed with CDH 13 weeks later, everyone started questioning her heart.  Each and every time Chris and I would remember the appointment that we heard it for the first time.  Our wonderful doctor even turned up the sound and let us listen for a few minutes.  We didn't know then just how much of a fight Ruby had left.  At that point we were happy she beat the odds and made that far.  We had a 40% chance of even getting to the point we were at.

This blog is about Ruby's journey.  We don't talk much about the road it took to get Ruby.  It was long and hard and totally worth it.

Here is Ruby one year ago today:

That tiny blob turned into this:

We've had a really good week.  Ruby's reflux seems to be under control, with the max dose of prilosec, but under control.  Some of her 3 month size clothes are getting too small.  I'm guessing she's over 12 lbs.  We don't have another scheduled wieght check until the 3rd.  Anyone wanna place a bet on how big she will be?

Well....

The white poop has gone away for the time being at least.  Maybe it was a short lived virus? I'm just glad it's gone.  Lets all hope it doesn't return.

Ruby has been really happy the last few days.  She's even started laughing, full on laughing.  She had been giggling for a few weeks now.  Then this weekend Chris was tickling her and she laughed.  She's been jabbering more, too.  It's really cute even at 5:30 in the morning when she's supposed to be sleeping.

Her bottle feeding is getting slowly better. The bottle feeding is one the hardest things Chris and I have had to deal with.  It's so hard when she refuses to eat.  We want to help her, but we can't.  I can now see why  we were told this could be a long frustrating road.  She is consistently taking 10-30ml from each bottle during the day.  We have successfully eliminated the 3am feeding.  Which has done wonders for Chris and I.  She never woke-up for it and she doesn't seem to miss it.  She still gets her midnight and 6am feeds while she's asleep.  As long as she continues to gain weight this shouldn't be a problem.  To make-up for the 3am feed we give her 90-95ml 7 times a day instead of 80ml 8 times a day.  She is also on the maximum dose of prilosec for her weight.  We upped it last week and it seems to be helping with the reflux.   We have our 5 month check-up next week.  I think I'm going to ask about introducing solids.  When have other CDH parents done this? 

Chris and I will be getting our flu shots at her next check-up.  She can't get them until she is 6 months old.  Now is another time where I have to be mean.  You will not come into contact with Ruby this winter unless you've had your flu shots.  Yep shots H1N1 (Swine Flu) and the regular one.  We can't take any chances.  We don't have much in the way of protection.  We need to embrace what we can get.   That means vaccinations and hand washing. We've been warned that the H1N1 will be especially bad this year.  Not that we think any of our friends and family would get Ruby sick.  We just have to be careful.

Here's a picture of all the medicine Ruby takes everyday.  Chris draws them up every night before bed.

Here's Ruby at 5:30 this morning, keeping Mommy from going for her run.

Here's a happy jabbering Ruby after her morning nap.

Nothing new to report this morning.  We don't have any scheduled check-ups until September 3rd.  We do have speech and physical therapy next week. 

Chris these pictures last night.   As you can see her head control is getting really good.  This will go a long way towards keeping her out of a helmet.  We try put her in the bumpo for 15 minutes 2-3 times a day.  Some days she likes it better than others.  Apparently letting her surf the net makes it more fun.

We'd like to report that Ruby has had "normal" poop for the past 24 hours.  Hopefully this will continue.  Other than a bit of reflux Ruby has had a good day. 

We've had a nice day celebrating my birthday.  Chris and Ruby  planned a very nice day for me.  As an added gift she only pulled out her NG tube once.  Here are some pictures from my birthday celebration. 

That's what we are doing.  All of Ruby's meds are now purple, which Chris and I knew.  We are hoping that's what is causing the purple, we just wanted a medical opinion on it.  Her doctor said he's never seen purple poop. The white could be something or it could be nothing.  If it continues we will test her liver.  If we are still getting white poop tomorrow I'm taking her in for a test, her doctor doesn't know this yet, but he will.  I'll give it another 24 hours, but that's all I'm willing to do.  Her liver isn't swollen.  She's growing like a weed.  So, her pediatrician isn't too concerned.  As like everything else we are keeping an eye on her and watching for any changes.  It was hard to convince the doctor that she was cranky when she was all smiles as soon as he walked in the room.

At least he didn't say "Ruby will tell us what she needs" or "If there is a problem it will present itself."  I love our doctors at CHOP, but I wouldn't mind it if those two phrases were banned from the English language.

She weighed 11 lbs 7.5 ounces!!!  Usually if a baby is having liver problems they don't gain weight. 

 Basically Chris and I will be over analyzing every poopy diaper until this all blows over or  a "problem presents itself." 

We've had a busy week.  With a few appointments and normal everyday stuff.  We've had a few concerns,too.

On Monday Ruby was cranky and just not herself.  Late in the afternoon she had couple stools that were white/grey.  I looked it up and determined it could be either liver problems or a virus.  She had been cranky and she didn't look jaundiced.  We decided to call the doctor in the morning (Tuesday) if she had any more white poop.  On Tuesday she woke-up happy and jabbering.  I figured it must have been a short lived virus.  Things were good until yesterday afternoon.  She got really cranky around 2pm and fell asleep an hour early for her nap.  Instead of waking her for her 3pm feeding I just gave it to her through her NG tube.  When she woke up around 5 I changed her diaper, this time it looked like cottage cheese, with some purple mixed in.  The purple was purple, not grape jelly colored. Then around 6pm she had another one, with less purple, but still pretty white.  We decided to call the on-call pediatrician.  He basically said it wasn't an emergency unless she started vomiting more than normal, was unconsolable for over an hour, or if her belly was distended and hard. He also said to save the diapers and bring them to our pediatrician in the morning.  Ruby, was cranky last night and didn't go to sleep until after 10pm and then woke up crying again around midnight.  After that she has been resting peacefully.  From what Dr. Google tells us white poop happens when bile from the liver can't get to the intestine.  Ruby's liver was never in her chest, but her intestines were.  Since her intestines have been manipulated, all this is very concerning.  We'll be heading the pediatrician today and  hopefully not the hospital.

On a good note her bottle feeding has improved a slight bit.  She is consistently  taking 10-20 ml by mouth EVERY feeding.  Which her speech therapist hthink is great.  Before she take 30ml at one time and none the next.  The fact that she taking a little at every feeding is a good thing. 

Sorry no pictures today. We've more important things to worry about.  We'll update as soon as we know anything more.  Tomorrow is my birthday, and I'd love to have a happy healthy daughter to celebrate it with.

We had our appointment with the Plagiocephaly Clinic this morning at a very early 8:15am.  Ruby seems to be taking after her father as far as mornings go.  She normally doesn't even wake-up until 8am.  The good news she doesn't need helmet, just yet.  We are going to to continue with PT and OT for her torticollis and plagiocephaly  for two more months.  If at that time she still has problems we'll get her a helmet.  I just hate to make her wear one if we can avoid it.  She has had something taped to her face her whole life.  She's been on so many different medical devices.  I just want her to be comfortable.  If she gets a helmet it has to be worn 23 hours a day for 2-4 months.  With a little work on our part she might be able to avoid it.  We are going to have be more diligent about repositioning her.  Now that she can hold her head up it should be easier to keep her off the flat spot.  We were also given the go ahead to put her in bumbo for 15-20 minutes a day.  I had been holding off using it, because I was worried her neck wasn't strong enough. 

Notice in the picture that she has pulled out her NG tube.

We've also managed to get a night time routine down.  Chris usually handles getting her fed, bathed, and to bed.  It gives me a break after a long day of caring for her.  Chris has found a way make bath time really fun. All I know is that it somehow involves EVERY towel in the house.  Ruby just might be a little swimmer.  She loves to splash and kick during her baths.

So, far this morning Ruby has pooped all over her changing table and pulled out her tube once.  She also pulled the feed bag connector out of the tube so her 6am feed went all over her bed.  Then she proceded to sleep in it for another hour, neither of us noticed it.  She didn't even wake up until I had her on the changing table.  Silly girl.   Add in spilled bottle warming water that shorted out the toaster.  Which in turn made the coffee pot and microwave sockets not work. Then  two really vocal hungry cats and you've got a less than pleasant morning.  Luckily we prioritized and got the coffee pot working really quickly.

Her heat rash is looking much better.  We've resorted to just keeping her inside in the AC. Hopefully we'll get some cooler temperatures soon.  By cooler I mean highs below 100.  Each day she is less congested. She's also back to her really happy and jabbering self. 

We've had a few questions about some of the things Ruby is pictured with.  The sling I've been using came from Ruby Toots.  Ruby also loves her wubbanubs.  Mom and Dad love them too.  It enables her to hold her own pacifier, which at 5am is a wonderful thing.  We've also been using Fuzzibuns cloth diapers, and love them.  We aren't getting paid to endorse these products.  I've just gotten a couple emails asking me about them.

Here's Ruby after second breakfast, enjoying her sun flowers.  Ella is ready to protect Ruby from the mean parents who have put a tube down her nose a couple times a day. 

We hope everyone has a nice and relaxing Sunday.  After this morning we think we deserve one, too.