A String of Bad Luck

After the diagnosis both girls had just gotten you would think there would be some breathing room coming our way, right?

Nope.

Week 21-23

PART 1

The appointment following Charlotte's diagnosis I was feeling large and in charge and pretty miserable.  I didn't think much of it beyond the fact that the girls were growing and so was I.  The began our weekly ultrasound - check heads, check hearts, check cords, check fluid levels. 

Ahhhh there was the real problem, their fluid levels were unbalanced again. 

You see in a MoDi pregnancy there is a safe zone for fluid levels, anything less than 2cm or greater than 8cm is danger zone!  Charlotte's levels were hanging in around the 3cm mark but Taylor's was at 12cm!!!  There was the idea that maybe some vessels were missed during the surgery and TTTS had returned.

We had to come up with a plan and we had to make a decision quickly (again).  We could try the surgery again but it couldn't be done until the next day and with both of the twins just being recently diagnosed with issues it would be extremely dangerous.  Our other option was to have an amnio-reduction and it could be done right then.  We chose the amnio-reduction.

The surgery was crazy enough to witness and this was just as intense.  I of course was awake for this whole procedure and was slightly numbed at the injection site.  There was a HUGE needle involved and it was going right into my abdomen.  My husband and Dr. S start making small talk (we'll say it was to help ease my nerves but I don't think that was the true intention) about how he uses those same size needles on the farm.  They continue to talk about cows and our farm life and meanwhile I'm watching my babies on the sonogram screen, one with a needle in her cozy little home, one wrong move could spell absolute disaster. 

We all survived and I had a large size jar of fluid removed and could breathe better already. 

Back on bed rest I go for another week.

  PART 2

I finally come off of rest again and the very next day I find myself craving both hot wings from KFC and chicken nuggets from Cook Out!  I get my wings and make my way over to Cook Out and as I'm pulling out and turning left onto the busiest highway in our town I get hit and my car gets totaled.

I just knew for sure it was all over.  I just knew my babies were gone.  I remember two thoughts running through my head as I saw that car come towards me.  One - Mommy loves you babies please don't ever forget that!  Two - do not tense up or you will pay dearly for it later. 

Because of the already complicated state of the pregnancy EMS felt more comfortable with transporting me via ambulance to be checked on.  I sent Dr. S (who is an hour and half away) a text letting her know what has happened and she is on stand by.  I get checked into the ER and await an ultrasounds and Glory be to God both babies were alive and well!!  Their little heartbeats sounded just as good and just as strong as the first time I heard them.  I was so thankful and over the moon that we were all ok!

PART 3

A few days after my accident I wake up and am in horrible pain.  I knew it wasn't labor but I also knew I had never felt a pain quite like this before in my life.  I had had some trouble using the bathroom (can be normal in pregnancy) so I thought maybe that was the issue.  I spent the night in the bathroom rotating between the commode and the bath tub and shower but the feeling would not subside.  By the time my husband woke up to get his day started I could not take the pain any longer and had him take me to the ER.  Luckily I have a good friend and at this situation, a guardian angel, who works in our local ER and she was prepared for me.  

When we arrived he had me wheeled in and the registration desk wanted my name but I couldn't form words through the pain anymore but luckily my friend came and rescued me.  

First thing they wanted was a urine sample so I walked so very slowly into the restroom to work on that and when I cleaned myself up there was the jagged like monster that was making me so miserable, a nice little kidney stone.

There was still same pain after it had passed so there were able to give me some baby safe medicine and hope that I passed whatever was left without issue and I think I did but I felt so calm on those meds I really have no clue.

Smooth(er) Sailing

Weeks 20-22

We continued to watch Taylor's progress (Baby B) and prayers were heard, the bleeding stopped!  We felt a peace in our decision and Taylor continued to stay on a path to better health.

Now, Charlotte (Baby A) could not be out done by her sister and continue to sit in the back of the worry your parents to death train.  She now had an issue herself, a term we would need to come to research and plan for, amniotic band syndrome.

Amniotic Band Syndrome occurs when the unborn baby (fetus) becomes entangled in fibrous string-like amniotic bands in the womb, restricting blood flow and affecting the baby’s development.  Amniotic Band Syndrome can cause a number of different birth defects depending on which body part(s) is affected. If a band wraps tightly around a limb, the limb can actually be completely amputated. The baby may be born missing fingers, toes, part of an arm or leg. If the band is across the baby’s face it can cause cleft lip and palate. In a large number of cases the baby is also born with clubfeet. ABS is also the cause of numerous miscarriages, such as when a band becomes wrapped around the umbilical cord.  ABS occurs randomly. It’s not genetic, nor is it caused by anything a pregnant Mom did or didn’t do during pregnancy. To date, no prenatal factors have been associated with ABS. It is extremely unlikely that ABS will affect a future pregnancy. (https://amnioticbandsyndrome.com/) 

When the doctor presented this information to us we were told that where her bands were should not be life threatening but we would keep an eye on blood flow.  There was no way of knowing how deep these bands were on her skin until birth and all there was to do was wait.

As if our ticket to deliver an hour and a half away from home wasn't already punched it was double punched with this new development.  It was highly likely that Baby A would lose fingers before birth and would possibly need part of her left lower arm amputated.  We would need highly skilled surgeons to assess the situation and be prepared for what she might need to have done.

I started researching and joining support groups for this syndrome and trying to get an idea of what life might look like with one child who may or may not be delayed and another who may or may not have part of her arm.  Would I still be able to work between therapies and doctor appointments and surgeries and recoveries?  Would the house (still a work in progress) be conducive to their needs and abilities?  There were still more questions than answers but we knew God had this and we just had to put our ship on cruise control and hope that the waters were starting to calm down.