The journey from the beginning

Wow, starting from the beginning.  It seems like so much has happened already.  On July 4th, 2010, we found out we were pregnant.  We were so shocked, it felt surreal.  We watched as the lines on the pregnancy tests quickly became darker every day, and our blood test results were HIGH.  They were so high we actually thought they might be triplets!  The first 2 ultrasounds, the fertility dr. said he saw a second little sac but didn't expect this second baby to make it or grow.  However, she just kept growing!  


I was barely 4 weeks pregnant and at work with no CNA, so that meant lifting patients on my own.  I started bleeding and I didn't stop for 4 weeks.  It was worse at work than at home.  My new OB/Gyn didn't seem concerned and at my 8 week appointment, I met with the nurse practioner, not with him.  I felt like something was wrong or maybe Baby B wasn't there anymore but I wouldn't meet the dr until I was 3 months pregnant and my next ultrasound was scheduled for when I was 5 months pregnant.  I switched OBs.

Starting at week 9, I got terribly sick and exhausted.  I couldn't make it on my drive home without having to sleep or throw up.  I threw up 10 hours a day and felt like lying in a ball in a dark room somewhere for the rest of the day.  Cheryl came home and found me laying in a ball on the floor crying... I was miserable.  Then I got Zofran, which is a miracle drug! I still feel like crap but at least I'm not puking. Cheryl was so cute and got my medicine for me, and scrubbed the toilets extra well so I could lay all over it without being grossed out.  =)

I was working all weekend and exhausted.. I came down with a bad cold that just kept getting worse (especially the coughing).  On Monday, I woke up bleeding and with cramps.  My dr sent me to the ER.  I was diagnosed with a "threatened miscarriage" and "upper respiratory infection" and told not to work until I could see a high-risk specialist.  At the ER, they found both babies growing well with strong heartbeats and no active bleeding on my part, so we were very relieved. 

On Wednesday, we saw the high-risk specialist.  I was expecting to hear the reason for why I was bleeding so much but expected only good news.  Boy, was I wrong.  Totally not prepared for the words about to come out of his mouth.  First, the ultrasound technician spent a lot of time measuring and looking at the babies.  With Baby A, she was talkative and saying everything looked good.  When it came to Baby B, she got far more quiet.  She left the room and said she'd be back with the dr.  Not good, right? We still didn't suspect anything.  When the dr walked in, they did another ultrasound and when she was showing him Baby A, he abruptly said "Let's focus on Baby B".  We knew then something was wrong.  First, he told us the reason why I was bleeding.  I had a blood clot (or subchorionic bleed) between the outer membrane of the baby and the placenta, which increased chance of miscarriage and it was average size.  He also told us that Baby B has a very rare condition called heterotaxy. The baby's heart and stomach were located on the opposite side of where it should be.  He talked about 5 minutes on terminating the baby if we "didn't want to deal with it".  He also spent a lot of time avoiding looking at me since, by this time, I was sobbing.  He said if I was going to miscarry Baby B, Baby A would be miscarried also because of his lower position. Cheryl likes to call him Dr. Death now.  We thought it was a death sentence.  We pictured a baby hooked up to tubes and laying comatose on a table for it's whole life. 

THEN we did a lot of research and found that's not the case.  Granted, there ARE challenges and multiple surgeries involved for most cases, but there's a good chance this baby can lead a normal life. 

A few days ago, we had another ultrasound and dr appointment that lasted a good 2 hours.  So much information! Both babies are growing great with strong heartbeats.  The subchorionic bleed is completely gone!!  Also, Baby B might be a girl! The ultrasound technician did confirm the heart is on the right side but the stomach is on the correct left side, where it should be.  Maybe the stomach grew into the correct place??  We got our blood test results back (for Down's Syndrome, Trisomy 18 and other genetic defects) and all were negative for both babies.  We found out I'll be delivering at Scripps Memorial La Jolla, which was the hospital I wanted because of the reviews and a higher level NICU since we'll probably need it.  Dr said it's common to deliver 4 weeks early with twins, so to expect a Caesarean to be schedule late February, but we'll probably deliver mid-February.  I have been cleared to do light exercise again! And I love our new Ob... she seems so knowledgeable, compassionate, and on top of things.  Baby B has a pediatric cardiologist now and a high-risk specialist we'll be consulting with.  I think we're in good hands. 

The only things to dappen our day was that we found out Dr. Death told the OB Baby B has a "low prognosis for survival".  Why? We don't know.  Is he just making a generalization with the condition or is there something different about this baby that makes him think that? She also told us that he felt if the baby was going to die, it would best earlier than later, because then it will be putting Baby A at risk.  She said that the tricky period is week 20-28 because this is when babies with this condition usually die in utero, which is *not* early in pregnancy.  Therefore, I am out of work until after these babies are born and we'll have dr's appointments every week or every 2 weeks depending, just to check up and make sure the baby is still thriving in there.  The OB seems to feel bad we are hearing such terrible things right now and feels like such a horrible diagnosis shouldn't be certain at this early stage.  She wants us to try to relax as much as possible and be as stress-free as possible.  A lot of upcoming news to come.  We have an ultrasound on September 28th and might possibly find out the gender of our babies.  We have a full anatomy scan on October 7th which will tell us the severity of this problem.  And then we can go from there.  Thank you to those who have checked up on us and care about us.  We need all the support we can get.  =) 

Most people haven't heard of heterotaxy.  Heck, our own OB has never had a case like this.  We found this page on a simple definition on what it is if you're curious: 
http://heterotaxy.org/what_is_heterotaxy.aspx