The Fetal Echo

And we are back!!  Hopefully I can finally finish Aubrey’s journey and start blogging about HER!  This summer was crazy for us and it’s so hard to blog with all 3 kids home all the time!  Now that 2 out of 3 are back to school I am finding a bit more time to myself 🙂  So without further adou, here’s the story of the fetal echo we had of our perfectly imperfect baby’s heart prenatally…(I started this post over 3 months ago and this post is almost a year after the actual fetal echo!!)

This title, the fetal echo, is just a fancy way of saying an ultrasound of the baby’s heart.  Echo is short for echocardiogram.  This is an in depth ultrasound of the baby’s heart.  It looks really closely at how the heart pumps blood through all arteries and veins and through the valves and so forth.  Anyways, the appointment was made for Wednesday October 7th at 2pm at the Kaiser Maternal Fetal Health center where I received my amnio and also where they confirmed the cleft.  These were now my new docs for the remainder of the pregnancy.  I had my dad come over to watch the older two kids and decided that it would be fine to go by myself to this appointment because I was convinced that there was nothing wrong with her heart.  This is a standard procedure for cleft kids since, as I mentioned before, it’s considered a midline defect.  The heart is also midline so they need to do extensive checks on the heart as lots of cleft babies also have heart issues.  I just knew that my baby’s cleft was isolated but also knew I needed to go to this appointment just to “make sure”.  I even emailed the doc. the night before the appointment explaining that I thought it was completely unnecessary that I show up to this appointment.  She talked me back into coming anyways.

I showed up without Chad figuring we’d just be looking at the heart and I’d be sent on my merry way.  The ultrasound tech came in and did her thing.  This was a great appointment because it coincided with my test on the heart in my A&P course.  The ultrasound tech couldn’t tell me what or if the baby had anything wrong with her heart but she could tell me exactly what she was looking at.  So with that we reviewed the heart in depth.  I think she is partly to thank for how well I did on my practical exam.  Anyways, it wasn’t a completely relaxing appointment because when we started the appointment and were just looking at the structures of the heart the ultrasound tech was super cheery and helpful.  Then we got into the more detailed structures and there were lots of pauses and her facial expressions started to change.  I knew something was wrong or not totally normal based on how her demeanor changed.  I just wanted the appointment to be over.  After what felt like hours, the doctor came in and sat down and picked up the ultrasound wand.  She placed it on my stomach and began.

They don’t really sugar coat much here at this place.  She began with “well the baby is looking good and growing fine but…”, and there it was.  My heart absolutely sank.  She explained that my baby had what looked to be a narrowed aorta.  The aorta is the large artery that pumps blood out of the heart.  This is kind of a critical artery because without we would die.  She didn’t go into detail because she didn’t want to scare me.  She explained that the baby’s aorta is about the size of a piece of spaghetti at this point and she wasn’t even sure my baby had this narrowing or if it was something we should even be concerned about because she wasn’t a cardiologist nor was she in fetal medicine.  Everyone at this clinic basically just specialized in maternal/fetal health and diagnosed the issues.  So she recommended that I get a better, more in depth look at our Children’s hospital and have another fetal echo. done there to either confirm or deny their findings.  She also told me that if the baby had to have a defect, this is the one we would want her to have because it’s very treatable and in the grand scheme of heart surgeries, “pretty easy” to do.  OH great!  So basically I was told that my baby may or may not have a heart problem and that I would need to wait even longer to get this confirmed for me.  And of course because I had already been given this information I was left not knowing whether or not to worry.  I decided not to worry about this heart thing because at this point I was still convinced that she didn’t have a heart problem and the doctor even helped confirm that with her vague diagnosis.

BUT of course we couldn’t just leave it at that.  There was something else “of mention” in the ultrasound that couldn’t be ignored.  The doctor started like this, “We also see a small amount of blood in the baby’s feces.  There is a 99% chance that this is due to the fetus ingesting some blood through the amniotic fluid after your amnio and that she’s still trying to get rid of it BUT it could also mean that your baby has cystic fibrosis or CMV, an infection that could cause severe developmental defects in the fetus.”  WTF!?  First of all I had never even heard of CMV and second of all why was this the first time they had seen blood in her bowels!?  All I could think was that this HAD to be because of the amnio!  I asked the doctor what we had to do now.  She said that if it were her receiving this news, she would want to rule out the CF or CMV possibilities and advised for me to get a blood test to see if I was a carrier for CF or if the fetus has CMV.  I obliged because what’s one more test at this point?  I was sent with orders for a blood test to rule out these other debilitating problems that again, could forever change the course of our lives. I went straight from that appointment to the lab to get my tests done asap.  It would be another week or so before I would receive the results.

I went home that night and did more crying and researching on what cystic fibrosis actually is and the prognosis isn’t good.  I know more about cystic fibrosis now than I ever thought possible.  I also now know that CMV is one of the scariest things out there and that if you’re pregnant it’s EXTRA scary.  Ok actually it’s not at all scary for you if you’re not pregnant but want to know who the most susceptible people are to get it and spread it?  Toddlers ages 1-3.  Guess what I had TWO TODDLERS AGES 1 AND 3!  It’s not at all deadly for them either and you’d just chalk it up to a nasty cold and move on with your life then they become immune to it and that’s that.  But if you are pregnant and have never been exposed to it then your fetus is at a huge risk.  I was tested to see if I had been exposed to CMV and if I had antibodies already in my system to fight it off or if I’d never had it before or if I had had it any time during my pregnancy.  The CF test is an easy blood test that just tests your genes to see if you’re a carrier or not.

So that’s how my fetal echo went.  More on the results from my blood tests (ok obviously I’m not a CF carrier which I found out before the results were even in in some other paperwork from a previous doctor for my previous pregnancies (I had already been tested and tested negative) and the CMV test showed I had never had the infection.  I was terrified knowing that I had never had the infection before and still had so much longer to go with my pregnancy but my doctor told me that after 20 weeks gestation the infection is far far less likely to harm the fetus.  Amen.


One Year

I started this post almost 2 weeks ago but wanted to document how important time can be for people waiting on news.  Expecting the worst.  Hoping for the best.  Never expecting the unexpected.  One year ago…

Today, August 31, my husband’s birthday of all days, marks the one year anniversary of our 18 week anatomy scan of Aubrey.  Little did we know that 24 hours later we’d receive a phone call that rocked our universe.  Little did we know that a few days later we’d opt for a level II ultrasound and that a cleft lip would be confirmed.  We knew nothing one year ago about clefts or hearts or had any clue that we’d be lumped into the category of having a “special needs” baby.

Would I change anything?  Of course I would.  I would never ever ever want my baby to go through what she had to in her first 5 months of life nor would I have ever wanted to go through the emotional struggles and anxiety that my pregnancy brought both me and my family.  But I can’t change anything.  I can only move forward, expect the worst and hope for the absolute best.  You know what?  The power of positive thinking is so freaking important.  I learned through this baby and these experiences to be a more positive and upbeat person.  This baby has completely changed my mindset on everything.  I mean EVERYthing.  I know I have expressed my gratitude for this baby in previous posts but my heart is just so much bigger than I could have ever imagined now.  I’m so grateful for what we have gone through with this child. These experiences have not only shown me that I’m so much stronger than I ever thought possible but they’ve also opened up my mind and my heart to those families who are going through so much worse than what we have had to go through.  It’s shown me that the smallest person can have so much strength.  If ever I run into a challenge that I can’t see myself overcoming I think of my newborn baby having open heart surgery and while she didn’t have any say in whether or not she was going to have this surgery she has shown me so much strength.  I always think of her when I hit a wall and know that if she can do what she did and come out more than ok then I can over come my shitty day or hard workout or conflict with a friend.  This baby has made me so much more compassionate towards other’s situations and has also opened up entire worlds to me that I never even knew existed.

We have survived one year and hope to survive many more.  My sweet Aubrey bear, what would I do without you?  Thank you for choosing us a million times over.  I needed you so badly and you have saved me in more ways than you will ever know.  I love you my sweet baby girl.