#6 // Back to square one

Our StoryJoanna ZuidemaComment

Even though we were prepared for our first appointment at MNPP thanks to Nurse S, actually going to the appointment was still very nerve-wracking. 

The appointment started with an hour-long, highly detailed ultrasound. Norah definitely made the sonographer work for it. (This happens EVERY. TIME. Norah will let you see what she wants you to see, when she wants you to see it.)

After reviewing every inch of her, the ultrasound was sent to the perinatologist for review.

So we waited. Let me tell you — minutes crawl by like slugs on a sidewalk on a hot August-in-Alabama Sunday when you're waiting for someone to come in with news about your baby.

After an extended review of the ultrasound, we met our new perinatologist - Dr. S. 

His findings? Dr. S found everything the initial ultrasound tech found, but not only that, he found more.

Skidding back PAST square one...

Here's what he found:

  • An abnormal heart – we would need to meet with a pediatric cardiologist ASAP to determine exactly what was going on.
  • Spina bifida was still present and her head still measured quite small – Dr. S called it microcephaly (which literally just means a head measuring more than three standard deviations below the normal range – don't believe Google images.).
  • An umbilical hernia/omphalocele (The terms are interchangeable depending on who you talk to. This means that some of her intestines protrude into her umbilical cord. Evidently, at a  certain point during our fetal development, our intestines go out into the umbilical cord the retreat back to the body a little later. Hers just didn't fully retreat. This can be repaired with surgery – similar to a typical hernia)
  • Abnormal brain development
  • Small eyes

Each of these concerns individually are managebale. What concerned Dr. S the most was that they are all presenting together. This is a likely sign of a chromosomal abnormality. It could even be Trisomy 13 as the blood test we did isn't 100% accurate.

Dr. S offered us the chance to do an amniocintesis – a diagnostic test where a needle inserted into the amniotic sac to draw fluid from around baby. He informed us of the risks and benefits as well as our options, sharing that many parents choose to wait and that’s perfectly fine – they could gather the same genetic information after birth through a simple blood draw.

I don’t know why, but I had a strong mama bear gut feeling that we needed to say no. Yes, there is less than a 1% chance of something going wrong, (the risks associated with amniocentesis include infection, premature labor, or even miscarriage) but there was also a less than 1% chance of Norah showing all the abnormalities that she has. Statistics are in no way reassuring to me. 

Dr. S reiterated that we could absolutely choose to decline the amnio, with no impact or impairment to Norah's care before or at birth in any way. Testing would only give the medical team a slightly better idea of what to expect. So we declined the amnio.

As for everything else, he couldn't give us any sort of prognosis. The tagline for this pregnancy should be Wait and See.

All we can do is take it one step at a time.

Next step – cardiology appointment.

Continue the story > #7 // Olympic Medals