Ups and Downs: the Latest in the Surprise Saga

I'm seeing a pattern here.  Every two(ish) weeks we get new, surprising, and sometimes difficult news.  Here's how it's all gone down:

5 weeks ago on Monday, March 8 (8 weeks along)

Found out I was pregnant.  With an IUD.  After experiencing what I thought was a miscarriage.  Oh yeah, twins.  Double shock of a lifetime.  Doctor didn't want to overwhelm me so she didn't give me much information.  She wanted to give me time to process the pregnancy before talking specifics.  Craig was not with me.

4 weeks ago on Monday, March 15 (9 weeks along)

Back to my OB...this time with Craig.  We were slowly but surely accepting the pregnancy.  At this appointment, we talked a lot about the risks of pregnancy at 38, pregnancy with an IUD, pregnancy wiht a subchorionic hematoma, and pregnancy with twins.  My doctor joined us for the ultrasound and Craig got the chance to ask several questions...something we didn't know would be possible with all the Covid restrictions.  We left that appointment still overwhelmed and nervous for this new life, but also (mostly) positive and hopeful.

3 weeks ago on Monday, March 22 (10 weeks along)

Another OB appointment.  This one was low key.  Babies hearts were still beating via a quick check on ultrasound.  Bleeding returned a day later.  We were a little nervous to head to our Broken Bow, OK vacation but decided some time away would be good for the whole family.  (The vacation is also when we told our kids about the babies.)

2 weeks ago on Monday, March 29 (11 weeks along)

My first appointment at Advent Health (formerly known as Shawnee Mission Hospital) to get to know the team of maternal fetal specialists and start looking more in depth at the babies.  The main concern moving forward is Twin to Twin Transfusion Syndrome, which is basically when two babies who share a placenta get unequal distribution of nutrients...bad for both babies, but especially bad for the "donor" baby.  At this appointment, babies looked great, except for a possible concern of gastroschisis for Baby A.  Gastroschisis happens when the intestines don't migrate back into the stomach like they should around 10-11 weeks and would require post-birth surgery to put the intestines in place.  The doctor wasn't 100% confident and asked me to come back in two weeks for confirmation of the diagnosis.  Not the news we wanted and certainly nothing on our radar.  (But also, after a little bit of research, not a huge, lifelong concern.)

1 week ago on Tuesday, April 6 (12 weeks along)

Another OB appointment.  My doc was on vacation, so I met with another OB at my clinic.  She was so sweet and caring.  When I mentioned the possible diagnosis of gastrochisis, she basically replied, "Oh gosh, Baby will be fine!"  In her own, more professional words, of course, but that was my take-away.  She gave me every reason to believe that if something is "wrong," then perhaps this was one of the better care scenarios.  She also reminded me that technology detects way more than it did 20 years ago, and oftentimes causes way more concern than it ever should.  I left that appointment feeling very optimistic about Baby A's future.

Yesterday on Monday, April 12 (13 weeks along)

Two-week follow up at Advent Health to look once again at the possible gastroschisis in Baby A.  The doctor said she wasn't seeing what she saw two weeks prior (even though looking at the prior images would once again lead her to the same conclusion).  She said something didn't look right to her; although she couldn't pinpoint what it was and wanted another specialist to look more in depth.  Keep in mind, she is already a maternal fetal specialist...but wanted us to go higher.  (She mentioned a possible conjoined umbilical cord.)  

We were referred to Children's Mercy for follow-up the same day (talk about scary).  Two hours later, we were walking the halls of the children's hospital...the same walk we had taken nine years to the month prior.  It really is the cutest hospital with the nicest employees, but it's hard seeing so many sick kids in the halls, in the pictures on the wall, etc.  

We started with some questions about my prior pregnancies and deliveries (standard questions, I'm sure, but it always puts Craig on edge).  Then we moved into the ultrasound.  The sonographer was wonderful and talked us through most of it.  Of course, she can't say much as she is not a doctor, but she did confirm that based on the positions of the babies (they were almost cuddling) it was hard to get some of the measurements.  After the 1+ hour sonogram, we were left to wait.  And wait and wait and wait.  We waited over an hour for the doctor, which was pure misery.  

We were finally greeted (around 4:45? we had been there since 2pm) by the sweetest doctor, Dr. Vlastos, an older man who kind of reminded me of the doctor on This is Us.  Softer spoken, full of life advice, and very smart but great at explaining things in layman's terms.  He was funny when appropriate, loved that I was a high school math teacher (told me one of his math teachers was the one to set him straight and busted his butt in gear), and even laughed when I told him I had calculated the mathematical probability of getting pregnant with identical twins while on an IUD.  

Anyway, Dr. Vlastos said the conjoined umbilical cord was a non-issue; it was not, in fact, conjoined.  He also confirmed that the membrane between the babies spanned the entire way across the placenta (something else they couldn't determine at Advent).  But then he gave us the other news: both babies have what are called urachal cysts between the bladder and umbilical cord.  If the cysts grow, they could interfere with the fluid (urine) excretion in the babies (and maybe fluid intake, too? we aren't sure).  Worst case scenario: it could lead to death in one or both babies.  Best case scenario: the babies are born, in which case, it will likely no longer be an issue because the cysts are in the umbilical cords, which get cut at birth.  (I think I explained that correctly...this was my interpretation of what we learned. I can't promise it's 100% medically accurate.)

Moving forward, I will be continue to be monitored via level 2 ultrasounds every two weeks (back at Advent Health).  They will watch to see if the cysts are growing.  Another scenario: the cysts could remain the same size, which probably wouldn't be much of an issue, and/or the problem could resolve itself.  We are definitely witness to that third scenario, as Brantley was diagnosed with hydrocephalus at 27 weeks that resolved on its own by 35 weeks. 

There is no way to predict the outcome or know what will happen with the cysts or the babies.  There is currently no way of removing the cysts.  There are a few doctors in Europe who have tried unsuccessfully (ended up harming the baby).  

The doctor we saw said he has seen this 12 times in his 25 years of practice.  Needless to say, another rarity.  IUD pregnancy + identical twins + urachal cysts in both babies (likely because they are formed from identical DNA). 

I don't know that the gastroschisis was ruled out completely...he might have seen a small part of intestines in the umbilical cord, but it wasn't his focus and definitely not the main concern.

We left Children's Mercy (after 3.5 hours!) feeling more relieved than when we went in and more relieved than I was upon leaving Advent.  Ideal?  No.  But I think it was helpful to know that, assuming the babies make it to birth, we're not looking at any longterm issues.  It would be devastating to lose one or both babies, but at the same time I've said all along, if something happens, we're back where we started with our three healthy boys.

So there's the latest in this surprise sage.  Of course, life is never easy.  Five hours in hospitals was not how I thought my Monday would go, and we could certainly use some prayers, good news, and "normal" appointments moving forward.  These babies apparently want to make a larger than life appearance into this world and are already checking the box for dramatic.  Heaven help us.

No comments:

Post a Comment