High Risk Appointment 4

Today I had another appointment with the high risk doctor.  The goals for today were to check my cervix to see how it's doing and to look at the baby's heart again because they couldn't get a good view at the 20 week ultrasound (her arm was in the way).

The ultrasound showed she was growing like she's supposed to.  She was active and my cervix looks great.  It hasn't opened at all and the stitch still looks good.  Then they focused on her heart.  They could see the right side last time, but not the left.  As the tech continued to look the doctor came in to be a part of the ultrasound as well.  After looking at it for several minutes he told us he's concerned she may have a heart defect.  He's not 100% sure because she was moving a lot and it was hard to get a good angle long enough but it's enough of a concern that he wants to send us to the pediatric cardiologist to get an echo and find out for sure.

The specific defect he thinks she may have is called Tetralogy of Fallot.  The link takes you to the Mayo Clinic's info page about it. Here is another from Cincinnati Children's Hospital.  With this defect there are four issues.  The first is the narrowing of the pulmonary valve which reduces blood flow to the lungs.  The second is a hole between the ventricles which causes blood to flow back and forth.  The concern here is that not enough oxygenated blood will be pumped throughout the body and the heart is overworked.  The third is that instead of the aorta coming off the left ventricle it is positioned above the hole and is therefore connected to both ventricles.  Again, the mixing of oxygenated blood and non oxygenated blood is the issue.  The fourth is hypertrophy of the right ventricle.  Basically it becomes enlarged because it has to work so much harder.

The good thing is that surgery can fix it.  If she does have this defect she would have surgery anywhere from right after birth up to around 6 months or a year.  It all depends on how she does once she's born.  Right now it's not an issue because she's getting everything from me.  It becomes an issue when she is breathing on her own.  If she is cyanotic within a few days of birth they'll do the surgery sooner.  If not, it's a monitor and see timeline (this is all based on research I've done on my own . . . we'll know more once we see the cardiologist).

Unfortunately this surgery isn't done in Lexington so we'll have to go somewhere else for delivery and the surgery if she does have it.  I'll deliver wherever the surgeon is in case she needs the surgery quickly.  We'll see where the cardiologist recommends if it is an issue.

It's been a whirlwind of a day.  Deep down I don't think we'll lose her because of this defect.  As long as she's inside me she's fine.  Once she's born, I know this surgery has been around for a while and it has a high success rate with a low mortality rate.  Afterwards lots of people go on to lead normal lives (with yearly visits to the cardiologist of course . . . that's another thing to think about).  What's getting me is more the shock.  And the idea of one more thing being added on.  I know there is no such thing as a "normal pregnancy, " but I'm really over having things pop up.  We'll deal with things as they come and there's nothing else we can do.  We'll be as prepared as we can be and as informed as we can be and keep moving forward.  Do I like the idea of my newborn having heart surgery?  Of course not.  But the surgery can fix the problem so it'll be worth the worry.

I have to keep reminding myself she may not even have this defect.  They're sending us to the pediatric cardiologist because they're concerned, but they're not 100% sure that it's there.  The cardiologist will have the equipment and expertise to know for sure.  If it turns out she does have it, there will be a plan. Just like we had a plan for this pregnancy.  And aside from this, everything has been going well and the plan is working.  So there is no reason to think another plan won't.  They're also not concerned about anything else.  The doctor said sometimes this heart defect is associated with chromosomal abnormalities, but he hasn't seen anything to make him concerned about that.

I'd be lying if I said I don't have anxiety about this or that I'm not worried.  Right after the appointment I had my time to let it all hit me and let out my frustrations (and I'm sure I'll have other times too).  But worrying is not going to change or help anything.  Right now I'm going to focus on the positives and come up with the questions I want to ask the cardiologist.  We'll be seeing her in a week.  So at least it isn't too long to be in limbo wondering.  So thankful for the wonderfully supportive people I have in my life to help me deal.