Ruby Hope McKee Starling

We went for our routine BPP this morning.  As usual Ruby looks good.  My blood work checking my liver enzymes came back normal.  So, I am officially one of the unlucky few who have severe morning sickness the WHOLE 9 months.  Nothing exciting to report.  No sign of eminent labor, either.  

We did have a nice weekend.  I'm unable to do as much as we have been in the past.  Being 9 plus months pregnant makes walking for 8 hours hard.  We explored the Chestnut Hill area of town and had a couple social engagements.  We can't thank our friends enough for introducing us to thier friends and family in the area.  Friday night we went to a party.  Then on Sunday we enjoyed a home cooked brunch.  We even got to Quinn, who we haven't seen in four years.  The out pouring of love support has been wonderful.

Sorry that this post isn't more exciting, but for now boring is good.  In 10 days things are going to go from boring to pretty crazy in a matter of hours.  We're enjoying the calm before the storm as best we can.

37 Weeks!!!

Just incase you were wondering what Chris looks like at 37 weeks.

Ruby is now officially full term!  It's a huge milestone that from the very beginning we were worried about getting to.  We had another BPP  this morning and as usual Ruby passed.  I even had to stay on the monitor because she was so active and we needed a baseline reading. This isn't the first time this has happened.  We're really starting to worried about what it'll be like once she starts walking.  We also got to meet with Dr. M this morning, which was a pleasant surprise.  She was the one we met back in January during our consultation appointment.  She checked everything out and then discussed our plan for the next couple weeks.  Ruby is still measuring small.  Her weight is estimated at 5lbs 2 oz.  In reality she weights more than that mostly becasue of the way weight is calculated.  The diameter of her abdomen is used in the calculation, and given that her abdomen is missing her stomach and intestines, it measures a little small.  She is getting bigger at each appointment and that's what matters.  Her actual weight is probably closer to 6.5 lbs.  I'm measuring at 34-35 weeks, but again I'm getting bigger too.  I did have some blood work done to check my liver.  Nausea is a  symptom of a couple liver complications that can happen during the third trimester.  Since I'm still dealing with nausea, she wanted to rule out any liver problems.  Most likely I'm just one of the unlucky few who is sick the whole time.  i do appreciate that she is checking though.   From what Dr. Google tells me, I don't have any of the other symptoms of pregnancy related liver problems.  My blood pressure is really good and I'm not swelling or itching.  I will however wait until the lady with MD after her name sees my lab results, before I declare myself OK.

We are going to continue bi-weekly BPP's until I go into labor or 39 weeks.  The only reason I'd be induced sooner is if Ruby was showing signs of distress during one of the BPP's.  I've been having more frequent and stronger contractions,  but  no other signs of labor.  The midwife did say that since I am having contractions already I might not have to be induced.  Other than trying to eat a bit more, she said to keep doing what I've been doing.  I've been walking 45 min. a day 4-5 times week.  Throughout the pregnancy  exercise has been one thing that actually helps with the nausea.  It's just hard to do it when I feel sick, but I always feel good enough to eat when I'm done.  It was nice to hear from Dr. M that we are doing everything right.   

A couple weeks ago I had a dream about a chocolate heart shaped cake with blue flowers.  I apparently woke Chris up to tell him I needed this cake. The cake in my dream wasn't just any cake.   It had really rich chocolate ganache and vibrant blue flowers.  It was a fancy cake.   So, this evening Chris did his best to find a heart shaped cake with blue flowers.   He searched all over for a chocolate heart shaped cake with blue flowers and wasn't able to find one.  Instead he made the following cake for dessert tonight to celebrate making it to 37 weeks.  It's not the cake of my dreams, but it was even better.  I never knew Chris was so talented when it came to spraying a can of spray frosting on a grocery store cake that has been butchered with a knife.

We promise to post something as soon as we can if labor starts.  We both plan on bringing our cell phones and lap tops to the hospital with us.  We've even purchased a "Ruby Cam" so I can see live pictures of her while I'm recovering.  While we doubt the hospital will let us make it live on the net, we will at least have lots of video recored from it.   When it's time for Ruby's arrival Chris will handle the updates.  We're not sure how soon we'll be able to update once things get going.

We got a picture yesterday!  We didn't even have to ask for it.  Our favorite sonographer just printed us one.  Ruby was a well behaved baby as usual.  She passed with flying colors!  If you are interested in what exactly they look at during a  BPP you can read about it here.   The sonographer also took the time to give us a good look at her right lung.  It looked huge to our untrained eyes.  Her intestines actually look like intestines now, before it was hard to distinguish them from her small left lung.  The sonographer also confirmed that her liver is down, which we have known since December but it's nice to get confirmation once again. 

We met another one of the CNM's yesterday and as usual we really liked her.  We have one more to meet.  It would be nice to meet all of them before delivery, but we are running out of time.  All of them have been great and very supportive.  We do have our favorites though.  We discussed exactly what I should do if I think I'm in labor.  Unlike mothers having healthy babies, I'm to call as soon as my contractions are regular and strong.  She said to call if I'm having more than 2-3 an hour.  Given Ruby's condition,  no one wants to take any chances.  She said they would bring me in and start monitoring us.  This makes me feel less anxious about the whole situation.  We don't want to worry about making it to the hospital in time.  We also got to have a quick conversation with Dr. B one of the MFM's.  He always takes the time to talk to me even if  I'm just there just for a BPP and not an OB check-up.  Each time an MFM signs off on the BPP, we just don't always get to talk at length with the Doctor. 

For now Ruby seems to be happy right where she is.  I'm having some Braxton Hick's contractions and have been since about 28 weeks.  They are getting stronger, but not regular or painful.  We do know that it could happen at anytime.  Our bags are packed and in the car.  We've timed the drive to the Hopsital at several different times during the day.  I carry my golden ticket  with me every where I go. We're ready when ever she is.  I'm sure the moment we get more than 20 minutes away from CHOP it will happen.  Chris temped fate and went to Deleware last night to take advantage of the lack of sales tax.  While DE is only 12 miles away, I was sure I would go into labor while he was in a different state. 

While we are excited to meet Ruby, it's bittersweet.  Rightnow I'm breathing for her.  Once she is out the struggle really begins. I'm sure over protective mothers everywhere have tried for years to figure out how keep their babies safe for a long time now.  For us,  though the fear is well justified.  I'm probably going to be one of "those mothers" for the first few months or years.  I just hope it wears off by the time she goes to college.

We've received a few more handmade gifts and I hope get pictures of them up soon.  We also had a very nice visit with Malissa this weekend.  I've got some pictures of our tour of Philadeliphia to post, too. 

Yesterday I got  to spend the day with Bonnie at Longwood Gardens.   It was a nice day for walking around and looking at all the orchids.  The tulips were just starting to come up.  I'm guessing that in a couple weeks all the outdoor gardens will be in full bloom.  When we get home and I manage to channel my inner Martha Stewart I've got some new ideas to try in our garden at home.

I took plenty of pictures in hope of getting one or two good ones.  I'm not sure I'll ever have enough patience to learn how to take decent photographs.  

Here's one of me (and Ruby) in one of the many greenhouses.  It only took 36 weeks but I'm finally starting to look like a pregnant lady.  I spent so many weeks looking like I had just eaten to much over the holidays.  I'm glad I never had to get that T-shirt that says "I'm not  fat I'm pregnant" that I had contemplated so many times.

Orchids were every where!  It was such an impressive display.  I can't imagine how much upkeep all those orchids take.  I kept imagining hundreds of  little elves running around all night making sure all the orchids were fed and blooming.  I have to orchids at home and seeing all these makes feel guilty for the sorry state mine are in.

It tooke me a couple minutes to realize this was a wall of Orchids.

I can't wait to take Ruby here.  There was a really cool children's area with plenty of water fountains to play in!  We have agreed to let  Ruby take part in a study at CHOP.  Her surgeon is studying the long term effects of children born with conditions that cause pulmonary hypoplasia.  While this study won't help Ruby, it will help children born with CDH in years to come.  To participate in the study we will need to come back to CHOP for check-ups at least once a year until she is 18.  We also think it's a good idea for her surgeon here at CHOP to still be envolved in her care after we leave.  Over the years we will have plenty of chances to explore the Northeast on our trips back to CHOP. Longwood gardens will be definately be on our list.

Malissa, Chris's cousin,  is coming from New York for a visit today. Hopefully we'll get to explore some parts of Philadelphia that we haven't seen yet.  Chris is on call this weekend.  This will be the last time until after Ruby has her surgery.  He's going to have to work most of the night tonight.  So, tomorrow will be a very low key day.  The good thing  about Chris's job is that one of us will already be used to being up at all hours.  I might start looking forward to weekends that he's on call once Ruby comes home.  It'll mean that he can take the night shift since he'll be up anyway.

I'm going to try to request some pictures of Ruby at one of our appointments this week.  We've been having bi-weekly ultrasounds.  They just don't give us pictures like the Docs in Austin did.  I know we will have real pictures in a couple weeks, it'd be nice to have a couple more before then.

I wanted to post an update about our appointments this week.  Everything looks good.  Ruby passed her Biophysical Profiles with flying colors.  She's still on the small side, but she is growing and that's what matters.  We're to the point were if I go into labor they will do nothing to stop it.  We have one week until we are considered full term.  It's hard to believe that she could be here in few days, or weeks.  I'll be evaluated at 38 weeks and the Doctors will make a decision about when or if I need to be induced. I'm still dealing with the nausea, but it's nothing new.  I didn't loose any weight this week, but I didn't gain any either.  As long as Ruby is still growing, we have nothing to worry about.

Today while I was attached to the monitor, I had a lactation consultation.  We learned how to operate the pump and all the procedures we'll need to follow regarding the NICU.  They really encourage pumping and feeding the babies breast milk.  The lactation consultant made sure Chris knows how  to clean the pump parts and put it all together.  She even informed him that it would be his job to do all this.  I still think he's still  going to be getting off pretty easy :)  We got all our questions answered and everything we'll need to use the pumps.  Another perk we learned about it that as long Ruby is in the NICU and I am pumping I get meal vouchers for ALL my meals.  That will make things easier the first few weeks when neither of us are going to be up for cooking much less going back to the apartment just  to eat.  Chris won't get the meal vouchers, but he will get a discount.

Last weekend we ventured out to the Art Museum and walked up and down  Benjamin  Franklin Parkway.  Chris took a couple a good pictures:

Tomorrow I get to spend the day with my good friend's brother's mother in law.  I really hope that made sense.  I'm looking forward to a day out.  We are grateful that our wonderful network of friends has made sure we feel welcome so far from home.  On Saturday Chris's cousin Malissa might come visit from New York.  So, it looks like we have another fun weekend coming up.  I just hope I'll be able to keep up.

There are many different people rooting for us and reading Ruby's blog, which has been so very encouraging for us.  We've been able to inform some people about the details of our situation better than others.  Since we can't call or talk to everyone we know, that's why we started this webpage.  So we wanted to go over some of the things that the doctors have told us to expect, so that everyone can expect those things too.  We don't want anything to be a surprise to any of our friends and family, so nothing here is sugar-coated.  In our past 3 years of going through infertility, our friends and family have always been there for us with support, but what to say or do is rarely ever clear.  It's rarely ever clear for us either.  We've found that the best thing is for us to just keep people informed in a direct and frank manner.  Often, there is nothing that can be said or done, but just us knowing that other people are aware of our stress, fear, grief, or even joy and excitement is enough to keep us going.  Also, we would never want anyone to regret saying something unintentionally because we didn't fully inform them of our situation. 
 
As a brief review for those just tuning in, the condition she has is called Congenital Diaphragmatic Hernia (CDH).  It basically means that there's a hole in her diaphragm muscle and that her stomach and bowels have moved up into her chest cavity and are crowding out her lungs, preventing development (pulmonary hypoplasia).  This occurs in about 1 out of every 2,500 live births and the cause is not known.  Across the board, the survival rate is about 50%, but this varies greatly with each individual baby, depending on their amount of lung development at birth, timing and type of treatment given, presence of any other complications, and many other things. 
 
These are things that the doctors have told us to expect during delivery and the first few days after birth:
 
She is going to be born in CRITICAL condition.  Without medical intervention she likely wouldn't live more than 20-30 minutes.

During labor, at the first sign of distress they will do whatever it takes to get her out FAST, even if that means putting me under general anesthesia and having an emergency c-section.  We are putting Ruby's safety first.

We will not be able to hold her until she is stable. This very well could be weeks.

The same goes for baths, diaper changes, and even touching.

They will try to let me (Holly)  see her before she is intubated. Depending on her condition, I might not even get to see her.
 
She will be intubated and on a ventilator within 10 minutes of birth.  She will have tubes put through her mouth and/or nose into her lungs and stomach to drain fluid, feed her, and assist in breathing.
 
Once she is stable enough to be moved, Chris will accompany her to the NICU while I (Holly) recover from delivery. 
 
Because she will have many tubes and wires connected to her, she will need to be sedated.  She will likely be sedated the most of the time she is in the NICU.
 
CDH babies need as little stimulation as possible. Sometimes just changing their diapers can cause them to crash. She could very well be in an isolation room.
She will only have a diaper on. Her high-tech bed will monitor her temperature and keep her warm. This is because her Doctors don't want anything in the way if they need to do a procedure quickly.
 
Once she is stable (could be weeks) we can put booties and hats on her.
 
The surgery to move her bowels and stomach back into her abdomen will hopefully happen with in 5 days of birth.  However, they will not perform the surgery until she is stable enough to survive it.
 
Our main concern is Pulmonary Hypoplasia, not the fact that her stomach and bowels are in her chest. It's her lungs that we are REALLY worried about. She effectively has only 1.5 lungs and most likely the lung tissue she has is not the best.  We wont know until she is born.  There are no prenatal tests for quality of lung tissue.
 
Before the surgery she will only be fed through an IV because they want her stomach to remain as small as possible. 
 
After the surgery, she will be fed my breast milk through a feeding tube as soon as she is able to eat.
 
Children with CDH frequently have oral aversions, due having to so many tubes in their mouths and having food direct pumped into their stomachs.  Because of this, it is possible that she will come home with a feeding tube.
 
The doctors have told us to prepare for a 2-3 month NICU stay. That's 8-12 weeks IN THE HOSPITAL. That's June or July.
 
Her Lung volume to Head circumference Ratio (LHR) is 1.6.  Anything below 1.0 is considered severe.  Based on her LHR and prenatal tests, the doctors have put her in the best category -- 90% chance of survival. 
 
We've been told she has 20-25% chance of needing ECMO (heart lung machine for babies). We are really hoping she won't. ECMO is a last resort to give her heart and lungs a rest. It has ALOT of really scary side effects.
 
We have a long road ahead of us and we just don't know what will happen.  Having even a 1 in 10 chance of your baby dying is still very terrifying.  But we believe we have taken her to the best hospital in the world for her situation, and the doctors at CHOP continue to be very optimistic.  We are doing everything we can to give her the best chance she can get and we thank all of our friends and family for supporting us in this effort.  You are all very wonderful.

The drudgery of Chris working from home and me not working at all kinda set in this week.  We've been making a point to get out of the apartment at least once a day to keep from going stir crazy.  With my nausea rearing it's ugly head more than what had been normal it's been hard to get out this week.  On Wednesday though we got a PACKAGE! 

Our dear friends Becky and Jason sent us a really nice and thoughtful gift.  Becky makes wonderful quilts and I'm very happy to have given her a reason to make us one! I can envision many family movie nights and story times snuggled under this quilt.

I love the theme!   Please keep in mind I am not the best photographer.  These pictures don't really do the quilt justice, but we wanted to show it off.

Now all Ruby needs is a pair Ruby Slippers.

We had a nother Biophysical exam this morning.  As usual Ruby passed with flying colors.  The nurse doing her ultrasound commented on how Ruby is the best baby and always makes her job easy.  Lets hope Ruby makes the Surgeons job just as easy in few weeks.

The nausea is getting steadily  worse again as my due date nears.  I ended up getting sick twice while we were at the Hospital today.  It sucks but there isn't much more we can do for the nausea than we already are.  I've tried eveything, ginger, sea bands,  even acupuncture.   I'm stil taking the zofran and it does help, but sometimes even it doesn't work.  As long as it's not as bad as the first trimester, Ruby and I should be OK.  I just need to make sure I stay hydrated.  Of course 9 solid months of nausea is nothing compaired to what Ruby is going to have endure once she gets here.

I had another Biophysical Profile yesterday morning, and everything looks good.  Nothing exciting happening around here, and for once that's a good thing.  I'm feeling pretty good.  I had some problems with nausea on Friday, but other than that I feel as good as I can for being 34.5 weeks pregnant.

Chris and I took advantage of the good weather this weekend and did some sight seeing.  We walked all over Center City.  From Reading Terminal Market to the Liberty Bell to Rittenhouse Square and back.  It was great to finally get out and see parts pf Philadelphia.  We're finally getting "settled" in.  As settled as you can be living 2000 miles from home.   Here are some pictures from our weekend.

The Liberty Bell.  While you can just drive by and see it, it was nice to take tour and get a close-up look.

City Hall.

Chinese Friendship Gate.

Rittenhouse Square.

We made it to 34 weeks!  Ruby now qualifies for ECMO if she were to need it.  Her doctors have given her 25% chance of needing ECMO.  Even if she doesn't need it, today was milestone that Chris and I are glad to have reached.  Now we just need to get her to at least 37 weeks.

She's still measuring kinda small and so am I.  I've been eating as much as I physically can.  My weight gain is right where it should be.  Her weight measurements are just estimations so she could be a bit bigger than they are expecting.  The Doctors don't really seem to concerned.  She passed her biophysical profile and non-stress test with flying colors this morning.  During the NST she decided to take a nap. I had to eat some oreos and drink some orange juice to get her going. Which wasn't really hardship, as I don't really allow myself oreos very often.

We also got to meet with  an anesthesiologist and discuss my options for birth.  I had given up on having a lot of choices for birth and just want to do what is best for Ruby.  I was surprised to hear that as long as Ruby is handling things OK, I get choose what happens.  At the first sign of trouble that will all change as it should.

We're getting settled in Philedelphia.  Thanks to our wonderful network of friends we have a couple social engagments coming up.  We've been invited to dinner this weekend and a couple other things in the coming weeks.  It'll be nice to get out  of the apartment and make some new friends on our temporary new home.  Our apartment is actually quiet nice, you can see the living in the picture above.  After living in Texas for 10 years, the lack of central air is a little scary.  Hopefully it won't get to hot here until after we leave sometime in July.