Reeling

So much has transpired since the last post that I’m going to bypass the dramatic arc of the genetic testing to bring things up to date.  To get caught up:

  • The full amnio results came back clear.  Thrilled.
  • Due to confusion about whether a CF carrier test had been done (confusion was mine), the test was done later in the process than normal.  The same day we learned of the amnio results, we learned that I was a carrier for CF.  The amnio did not test for this, because at the time the test was done, it wasn’t known that this could be an issue.
  • It took a little over a week to find out if LG was a carrier.  During that time, we had the most gut wrenching fight in our marriage to date as we grappled both with the emotions of everything we had been through as well as our completely opposite view of what to do in the event the baby had CF.
  • On Friday of last week, we learned that LG was not a carrier.  We took the first collective deep breath in months.  I looked forward to our 20 week ultrasound scheduled for yesterday.  Given all the testing that we’d already had done, I believed with every fiber that we’d be given a clean bill of health and could begin to take steps to enjoy this pregnancy.  I secretly made reservations at the restaurant where we held our rehearsal dinner to celebrate this turning point.

Then, yesterday.  We went in for the ultrasound at yet another specialist.  (My OB works with a network of specialists for all the non-routine procedures – genetic testing, amnio testing, L2 ultrasounds, etc.  It makes you feel like you’re in great hands but it also means you’re always meeting new doctors.)  This being my first 20 week ultrasound, I didn’t really know what to expect other than that they would look at all the organs and take measurements and that it would take about 45 minutes to an hour.   The facility is beautiful – big plasma screen on the wall for both of us to watch the proceedings.  At first the technician was quite chipper and pointed out structures as as she went along.  As time went by, she got increasingly quiet and seemed to be spending considerable time on the heart.  Again, I thought perhaps that was normal but my spidey senses were starting to tingle.  Finally, she finished up but told me not to get dressed in case the “doctor wanted a few more pictures.”  I’ve heard that line before…right before the ovarian tumor that later became early stage ovarian cancer was first identified.

Then, a second technician came in and had me roll around a bit in an effort to get the Nugget to move.  (The baby was stubbornly reclining on its belly and wouldn’t flip over despite all our best efforts.)  She too zeroed right in on the heart.  Finally I asked her – fully expecting that she couldn’t and wouldn’t say anything  – if this was because something was wrong or if they just weren’t getting the pictures they needed because of the baby’s position.  She looked at me, paused, and told me that she really wasn’t allowed to say anything, but that there might be a problem.   My eyes filled with tears.  LG’s grip on me tightened and his eyes took on that faraway look I’ve seen so often the last several months.  The tech was incredibly compassionate with both of us.  I am grateful for her candor and very much hope it didn’t get her into trouble.

Finally, the doctor came in.  He showed us the picture that caused them concern and began to scan himself to see if he could recreate it.  At first he couldn’t reproduce the picture, and I started to think it was just a fluke, but then he did…and we all saw it at the same time.  Nugget has a growth on his* heart.  We then went straight to our OB who further explained the situation.

It appears the baby has something called a Rhab.domyoma.  As long as Nugget is in utero, he should be fine, because I am keeping him oxygenated.  There is a chance that the mass will stop growing and then it won’t be as much of an issue, but if it continues to grow disproportionately to the chamber and blocks blood flow to the atrium, then the baby will be in serious jeopardy when he is born.

On Tuesday, we go for a second opinion and to have a fetal echo performed.  We’ll also meet with a pediatric cardiologist and a MFM doctor.  Depending on what they determine, we may need to meet with a pediatric surgeon as it’s possible the baby will need heart surgery shortly after birth.  Our OB also said she’d be arranging a meeting with the NICU staff, since it is highly likely the baby will need to go immediately to special care.  That – more than anything – drove things home for me.

The only bright spot in all of this is that for the first time LG and I have come together over this kind of news instead of retiring to our separate corners.  For that I am grateful.  Things are quiet around our house, though.  We’re both operating in suspended animation until we learn more next week.

*We don’t know the baby’s sex, but I’ll use male pronouns going forward, because I don’t like calling the baby “it.”

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6 Responses

  1. Wow…that is so very much to take in. I am so sorry. Sending you lots of peaceful thoughts and prayers for your little one.

    Lots.

    (((hugs)))

  2. Oh wow, I’m so sorry there is something major to worry about. My heart just dropped as I read this. 😦 Many thoughts for you and the little one.

  3. Just catching up on your story…I am just so sorry that you aren’t enjoying the smooth sailing you so deserve at this point. I am thinking of you and hoping and praying that this proves not to be serious. If it helps at all, a friend of mine had a similar heart scare but it ultimately resolved on its own and she delivered a perfectly healthy baby. Sending lots of good thoughts your way.

  4. Oh Callie, you’ve been through so much already, and now this. I’m so sorry that you and LG have something new to worry about and that Nugget might have a difficult road ahead. Holding out hope that the mass stops growing and everything turns out fine.

    Take care.

  5. Oh the whole thing sounds just horrible! I am so sorry to hear you’ve been going through all this – and still have so far to travel.
    I too am hoping the baby’s heart resolves itself and comes into this world a-ok. Please keep us posted. Sending warm thoughts.
    Melanie

  6. Oh how scary! I am so glad that you and LG are in this together. I know the feeling of being on opposite sides and it sucks!

    Sending you SO much love and prayers.
    *HUGS*

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