Thursday, July 26, 2012

Mono-Mono Twins

We were about 8 weeks along when our doctor told us she believed the babies to be mono mono.  The most basic explanation of mono-mono twins is that both babies are sharing one gestational sack, one amniotic sack and one placenta.  It is a very rare way to carry twins, occurring in only about 1 in 60,000 twin pregnancies.

There are a lot of risks involved in a mono mono pregnancy.  The main risk is that with both babies moving around in the same space cord entanglements can happen causing one or both of the babies to lose their blood flow.  The fact we were given from our doctor was the babies survive until birth about 50% of the time.  She told us then that if the babies were mono mono, we would likely be hospitalized at 24 weeks so that the babies could be monitored 100% of the time and if they showed distress they could be immediately delivered.  We were told to consider all of our options before seeing the perinatologist the following Tuesday (the day after Memorial Day).

We came home and did as much "research" as we could.  Some tears were shed, we did a lot talking, considering and thinking.  It was a lot to take in.  One of the hardest parts was that there is not a lot of valid medical information out there about mono mono twins because it is so rare.  There were many stories, both good and bad, and we read many of them.  It was all very scary.  The babies are always delivered at about 32 weeks.  Many had health problems from premature birth, NICU stays and more.  Many also ended up being healthy and happy little ones.  There was so much to think about and it was a very long weekend.

Tuesday came and we had no idea what to expect.  I was afraid to even look at the screen at first.  After a little bit time we finally saw it...a membrane!  It was amazing.  From multiple angles there it was.  We both cried happy tears.  When we walked into the perinatologist office she pulled up the picture on her screen, pointed to the line between the babies, and said "That has to be a membrane.  There is nothing else it could be."  Giant sighs of relief.

A membrane meant that the babies were mono-di.  Same gestational sack, separate amniotic sacks.  That was a huge deal because it removed the risk of cord entanglements, however there would be some different concerns as we went along, but those involved things that were still very scary (like twin to twin transfusion syndrome) but they were also fixable and our doctors were committed to keeping us very closely monitored.

We walked out of that office so thankful, yet still very scared about the idea of adding two babies to our family.  Even so it was fantastic to not have to make a difficult decision and to hope that the pregnancy would go much more smoothly.  We spent a little time talking and even decided to book a vacation, to Disney World, because we weren't sure after the babies came when exactly we would be able to do something like that.

The euphoria was relatively short lived.  A couple weeks later, at our next appointment with the perinatologist, they began with the standard ultrasound.  It went on and on and on.  They couldn't find a membrane.  We had 3 different ultrasound techs, plus our specialist, scanning at one point or another.  They scanned internally, externally and every which way.  They couldn't find it.

They were unsure what that meant at that point.  They couldn't make any final decisions just then as to how we were carrying the twins.  There was a chance that they just weren't seeing it because it was may be too wispy and thin.  There was also the chance that it wasn't there.  I was frustrated because the previous appointment the doctor specifically said "there is nothing else it could be".  Suddenly, they said it could have been an echo, or shadow.  We left very frustrated, but hopeful that the next appointment might show the membrane again.
Twin A Heart Rate
Twin B Heart Rate
The Babies
Two weeks later, after an appt. in the middle with our regular OB that didn't show a change, we visited again with the perinatologist.  The ultrasound began and it was evident pretty quickly, definitely no membrane.  In fact, the little babes were kicking each other, something that could never happen in separate sacks.  We marveled at our babies but were definitely sad with the diagnosis.  This definitely meant a hospital stay, for up to two months, before delivering.  It was super hard on me to consider being away from my two kiddos for that long.  We talked about our options and what everything meant.

The first goal was to get to 24 weeks.  That meant that the babies could be "salvageable" as the doctor said.  At that point we would decide on hospitalization, 100% monitoring, and steroid treatments.  Our Dr. called 28 weeks Mount Everest.  If we could just make it there, the hope was far greater that the babies would survive and eventually be healthy.  I asked if they currently saw any cord entanglements. The answer was no, however they couldn't even find the cord that lead to baby B so it was hard to be sure.  We were also reminded that it can change in an instant.  Not seeing entanglements now was no guarantee for subsequent appoints.  We were reminded, again, that the babies make it to birth about 50% of the time.  All we could do at this point was wait, hope and pray that we would make it.

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