Tuesday, October 26, 2010

Meeting with our new Perinatologist

So we met him, our new high-risk OB (periniatologist).  All we can say is "eh".  It sounds like he will be the one mostly just checking to make sure I'm not going into preterm labor and that both babies have a heartbeat so we don't need to love, love him. 

The babies heads are both in the front where my belly button is and their bodies are extending to my back.  Maybe this is why my back pain started kicking in.  I've been doing really light exercise but still get these Braxton Hicks (fake) contractions so I asked him about exercise.  He told me that is "inviting trouble" and recommended swimming.  I am so sad.  It will be so hard for me to give up but I know my days are numbered.  Whatever I need to do tho! We have a pool here.  I just hope it's warm in the winter!

I got my flu shot.  Now all of you have to help me convince Cheryl she needs to get hers.=)

We found out we will be delivering at UCSD.  However, if baby Aliya needs surgery (and she will most certainly will), Aliya will be transferred to Rady's Children's Hospital while me and Shae will be stuck at UCSD.  There is no freakin' way I am staying behind while my child is having open heart surgery.  I either will have to recover immediately or they will need to ship us all out to Rady's.  I'm feeling pretty nervous about all of this.  Not to mention that Cheryl would be torn between being with me and Shae, and being with Aliya.  If I'm forced to stay, Cheryl would go to Rady's to be with Aliya and I would stay with Shae.  It would really suck to be separated like that but I just want everything to have a happy ending and that's the most important thing.
Good news is that the Dr said Aliya has a relatively stable condition during pregnancy so I should have a pretty normal twin pregnancy. 

It's pretty cool... I am 5 months pregnant this week.  I'm grateful for every day that I'm still pregnant and both of these babies have a heartbeat inside of me. Now if something goes wrong, I will be going to Labor & Delivery, not the ER, so I'm progressing to a "viable" pregnancy.  My nausea is getting so much better and I'm only taking anti-nausea meds maybe once every 3 days! Now I'm just starting to feel uncomfortable.

Upcoming is a growth scan next week, appt with Dr on 11/09, and info meeting with nurse practioner on 11/16.   Cheryl's thyroid surgery is also on 11/10 and she'll be spending the night.  That's all for now!

Monday, October 18, 2010

Another day, another diagnosis...

We spent the last week and a half researching what our previous dr. thought was wrong with our baby girl. Hypoplastic right heart syndrome, a very rare and commonly fatal heart disease.  The information we found on the internet was not promising and the more and more we read, the more and more depressed we got.

Today was our first appointment with Dr. Levy, our pediatric cardiologist.  As usual we were both a little reluctant to meet a new dr. out of fear of hearing more bad news.  We arrived at UCSD Hillcrest for our echocardiogram.  They got us in quick and got right down to business!  Nicole and I stared at the black and grey screen as Dr. Levy and the ultrasound tech zoomed in and out of what was our babies heart.  They discussed amongst each other, took notes and took pictures as we patiently awaited any new information.
Once the echo was completed, Dr. Levy sat down with us and a piece of paper and drew a picture of a normal heart.  Next he drew our babies heart.  There are 4 chambers in a heart, our babies' bottom 2 chambers are reversed and are angled to the right instead of the left.  Normally this would cause the blood to not mix and flow to the lungs correctly.  In our case though, her blood will mix normally even though the chambers are reversed.  The problem is they think the arteries that pump the blood to the lungs are abnormally small.  In this case she will need heart surgery right after birth and 2 other surgeries within the first few years of being born.  They can't fix her heart completely but they can make it functional so that she can lead a relatively normal life.  She also has a hole in heart but the Dr. says they're not worried about that and its actually a good thing in this case.

The Dr. seemed hopeful and at no time did he mention terminating the pregnancy unlike our previous Dr.'s.  They're still hoping that the arteries to the lungs develop more alleviating the need for surgeries.  Hearing that your child has a very rare and complex heart defect is never good news but we walked out of there feeling hopeful again.  As soon as we got home we started researching the various medical terms they gave us and this condition has a much better prognosis than the one they previously diagnosed her with.
We have an appointment with the new OB/Perinatologist next Tuesday and will schedule our next meeting with the Fetal Cardiologist for another ECHO cardiogram in 4-6 weeks.

Both babies are growing according to schedule!  In fact, baby b who has been behind this whole time is bigger than her sister now!  Nicole finally looks pregnant enough for random strangers to ask how far along she is.  She's incredibly beautiful and has the most perfect pregnant body ever!  She can feel the babies moving around now.  From todays scan they seem pretty active, rolling around and kicking each other!  We finally decided on both names, Aliya Cherene and Shae Azlyn.  I don't foresee us changing them again but you never know!

We scooped a new poodle from the Humane Society this week.  We saw her there.  She is 2-3 years old with sad shelter-puppy eyes.  We took a chance bringing her home not knowing her temperament or background, or even get along with our cats.   It turns out she's a hella good dog.  She doesn't bother the cats at all, totally potty trained, gives high-fives, and is already a part of our family.  We named her Snoop D-O double gizzle.  Fo shizzle.

I had my pre-op appointment today.  My surgery is scheduled for November 10th.  I'm less than excited about letting anyone in the Navy do surgery on me.  They'll take out half or my whole thyroid depending on whether or not its cancer.  I was considering not showing up for it at all but now my mom is threatening to post embarrassing pictures of me on facebook if i don't.  Blackmail at its best!!

Thursday, October 7, 2010

The Anatomy Scan

The last couple of weeks have been kind of uneventful, in a good way.  I feel like I'm growing bigger, getting a little more uncomfortable, and the babies have seemed to be ok every time we go into the doctor's office.  I still like to projectile vomit; sometimes the anti-nausea medicine is what makes me do it... but once I get it down, I feel good.  We decided easily on the name Aliya Cherene for Baby B.  Jordan and Cheryl won the vote for Baby's A name- Savannah Shae.  A couple of days ago, I was telling Cheryl how relaxed and happy I felt... we wondered if we were in denial and trying not to think about what's going on. 

The last day I have just felt this heavy weight and ominous, dreading our anatomy scan today and not feeling good about it at all.  I thought this 4 weeks in anticipation of it would be hard.  But it turned out, those 4 weeks were the best I had in this whole pregnancy and I didn't want it to be ruined.  These appointments with these high-risk specialists are so stressful and hard to get through.  I always try really hard to remain calm until I can get to the car and start crying but that never happens.  We were both quiet all day and didn't even speak the whole car-ride to the appointment.  Cheryl came picked me up to take me to the appointment after her work.

First, we had a genetic appointment and that was easy.  My family and medical history wasn't really significant and the donor's wasn't either.  We got out early and got a bite to eat. 

Then was the anatomy scan for Baby A, Savannah.  Her heart rate was 157, which is great.  She weighs 6 oz.  Everything about her is completely normal.  Both babies seem pretty low down in my uterus (especially Savannah), and the u/s technician asked if I had been having contractions yet (which I do when I'm on my feet too long or exercise at all), and this worried us a little.  But the dr later tells us later that the positioning of the babies are just fine.

Like last time, the ultrasound technician suddenly grew more quiet when it came to Baby B, Aliya.  Her heart rate was 145, which is still normal.  She confirmed that both babies are girls.  The stomach is now in the correct place on the left.  However, the heart is still on the right side.  She has 2 kidneys and weighs 5 oz.  Her growth measures about 3 days behind Aliya's, which has been the case since the beginning.

Then the u/s technician left to get the dr.  We were left sitting there for a very long time.  A new u/s technician came in (who is certified in cardiac) along with 2 other drs.   I got that same feeling of dread and knowing something was wrong.  The u/s technician took some more scans of the heart and the dr went ahead and continued to tell us... that the heart is abnormal.  He fired off some medical terms like hypoplastic right heart,  a possible double ventrical outlet, a small right side of the heart.  The left side of the heart is rotated over to the side and to the back.  The left ventricle is in the front instead of the back.  I asked if there was a chance that the baby could die before being born; he said "No, that's unlikely" but that I'm still at high risk for something going wrong at some point in the pregnancy - like the baby may stop growing, signs of non-reassuring signs from the fetus, or of Aliya compromising Savannah's wellbeing.  He went over again  options of terminating, which is not something we're considering unless something drastically changes.  He told us that our chance of having a baby with Down's Syndrome is more like 15-20%.  He recommended amniocentesis, which I dont' want to do because of the chance of miscarriage and if one baby miscarries, they both will.  We will not be delivering at Scripps La Jolla, like I was so wanting.  It will now be at UCSD because we need a tertiary level of care, with a high-level NICU and surgeons.  In fact, all of our care is being transferred from my OB that we love to a high-risk specialist for the remainder of this pregnancy.  We were told that this baby has a complex heart defect that will most likely require immediate surgery after the baby is born, and probably multiple surgeries (maybe even a heart transplant from what we see online).  We will not be able to take the baby home from the hospital for quite some time.   Next up is an ECHO cardiogram with our new pediatric cardiac specialist in 2-3 weeks.  We will find out more specifics and also a prognosis of survival.  We also have to consider an amniocentesis and see if that's something we will re-consider. 

A couple of weeks ago, Cheryl found out that her thyroid biopsy came back abnormal (her primary dr found a lump on her thyroid).  The dr is concerned and wants her to take out either half of her thyroid and her entire thyroid.  If she takes out her entire thyroid, she will have to be on hormone medications for the rest of her life.  If she takes out half of her thyroid, there is a chance it could function fine or it may burn out and she'll still have to take out medications.  She's opting to take out half of it and see from there.  The dr is suspicious that it is cancer but wants to do more tests on it once it's out.  Next week, she will get a pre-op appointment and then will probably be scheduled for surgery soon after. 

We've been having quite the health scares lately.  Send us hopes and wishes or whatever else you believe in.  =)
That's all for now!

Monday, October 4, 2010

They're girls!

Since our last posting lots has happened!  We took the babies to their first concert to see Tegan and Sarah and Paramore.  The following week we went to a Padres game.  I hope this doesn't mean that they will turn out to be Padres fans!  We finally graduated from sleeping on a mattress on the floor to a real bed!  Nicole was struggling to get up every morning so I figured it would be a good time for that! :)  We've been busy getting the house together and trying to plan what type of nursery furniture we want and how to decorate.   Baby's R Us had some sweet deals on car seats this past weekend so we scooped 2 that will look pretty sweet in the back of my car.

Our ultrasound was last Tuesday and everything is looking good so far.  They basically just wanted to show us the heart beats to ease any concerns we had.  Both heart beats were strong and they're both growing so fast!  The ultrasound tech was super cool and let me video the ultrasound with my phone and take some pics!  She also checked the genders of both and they appear to both be girls!  We met with our Dr. after the scan and she hooked up the Doppler so we could hear the babies' heart beats.  Baby A's was easy to find and Baby B decided to hide behind the placenta that day so we couldn't really hear.

We had the perfect boy and girl names picked out.  We were so sure that that's what we were having!  Man, were we thrown off!  We already know that Baby B will be named Aliya Cherene.  We're still deciding between Shae or Savannah for Baby A.

This Thursday will be a pretty thorough anatomy scan of each baby and we're both a little nervous and not knowing what to expect.  I'm hoping that Dr. Death has the day off and we get someone not so insensitive.  We should find out more about the status of Baby B's heart condition.  We're keeping a positive attitude throughout this whole process, thats whats best for both babies.

Will update more after Thursdays scan!