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.

So Much Has Happened...

I stopped writing because I couldn't make friends with what happened next with words.  I wasn't ready to put out in the world for judgment or ridicule or gasping and pointing fingers.  It was too much.

Wednesday, August 26, 2015, 11am.  Taylor had a brain bleed.

When we first heard this news it was presented to us as not such a big deal, "We will just keep an eye on it".  She was not my regular surgeon.  I still left uneasy that day.  Hollie had accompanied me to that particular appointment, which was 2 weeks after the surgery, and helped me calm down with some retail therapy.  I bought matching outfits because I believed in my girls and I knew the fight that God had put in them because He put it in me too.

But, Taylor had a brain bleed.

Dr. Google.  Not helpful.

Friday August 28, 2015, 6pm.  Surgeon calls me.

"Hey Chastity this is Dr. S.  I want to talk to you about Baby B's bleed and let you know what this might mean for her and what your options are.  So, babies who experience this in utero typically end up with cerebral palsy which has different severities.  She may never talk, walk, eat or be independent at all.  I had only had this happen once before and it did not end well. "  At this point I'm crying all over my phone. "Your only 19 weeks and the state of North Carolina allows selective reduction (that's what it's called when you terminate just one of your twins or multiples) up to 20 weeks.  We will have to know by Monday what you choose to do." ---WHAT?!

I have the weekend to decide if I keep my baby or let her go?!

I always thought I knew where I stand on this issue.  I thought I could never even think of or ever imagine killing my baby.  But here we were with two days to decide.  We were beside ourselves with emotion.  We told a very select few people because this is not something you want to openly talk about.  I called in my preacher, my neighbor, my friend who has faced so much loss (to no fault of her own) for guidance.  We knew that no matter what none of our options were easy or wrong or right.  It was the epitome of being between a rock and a hard place.  Oh God, what do we do!

We thought we had made a decision.

God stepped in for us twice.  Once through my husband and another through the doctor who first told us about the bleed.

My husband requested that we have another ultrasound first thing Monday morning to see all of this for ourselves.  We wanted to view this "thing" that was taking over our daughter's brain.  We wanted the doctors to explain it all to us whether they thought we could understand it or not.  This was God on the move #1.

I contact my surgeon and she makes it happen and we were scheduled for the first sonogram that Monday morning.  We see the bleed and we hear the words.  They measure her, they measure the bleed, the measure her brain.  They go over it all.  Husband asks the doctor who was the first one who told us of the bleed what her experience has been with this happening and she had none.  At that point we weren't willing to reduce the pregnancy based on very little experience the doctors had had.  Dr. P had God moment #2.  She then said "How about we see if we can get a neonatologist up here to look at her scans and give his thoughts on it.  Preemies get bleeds and he/she sees them everyday and he/she may can give you better information than what we have".  BEST THING we had heard all day so far.

We were ushered into a private family waiting area while they get in touch with someone.  It took less than an hour and we met the head haunch-o of neonatology at Levine's, Dr. H.   He sat and talked with us about what he saw.  "If I were looking at this as a scan of an already born infant I would grade that as a grade 2 bleed.  I don't see that the blood has reached any brain matter, your still early in the pregnancy and she her brain is constantly growing and changing and I can't guarantee she won't be affected but I would give her about a 80% chance things will be just fine."  He might as well have came in the room riding a unicorn with butterflies and rainbows coming out of his mouth as that's how beautiful those words sounded.  There was no way we were letting her go.

She had the fight God gave her and her Mama's blood running through her veins.  She was going to be just fine.

Dr. H left us with these words, "I would like to not see you again, so keep those babies cooking". Little did we know what was still to come.

But you see I'm now almost a year out from having to have made this decision and I still wrestle with that thought that I was so close to letting her go.  We had looked at it from all the angles.  We knew at some point her Dad and I would be gone and it would be up to her sisters to care for her, and was that fair for that burden to be on them.  We had seen through our own experience growing up that handicapped children are not treated well by their peers or society, is that something we could deal with?  We knew that she may have felt like God didn't love her as much as her sisters and that's why she was given this burden, how do you keep people from feeling like that?  Even though we kept on with both babies I still feel guilt every single day.  I don't think I could have lived with myself if we would have went the other way.

Let's Save Some Babies

I slept surprisingly well the night before the surgery because I am a planner and there was a plan in place to save my babies.  We had to arrive at the hospital around 10am and surgery was scheduled for 12:30pm.  Pre-op took longer than anything but of course it's very necessary.  I was able to see my husband for about 5 minutes before being wheeled back to the OR.  I cried some anxious tears going down the hall and managed to gain my composure before reaching the doors.  I am an avid watcher of Grey's Anatomy and that has been my only reference of what an OR actually looks like prior to this and it just wasn't quite the same.  The operating table is small and it's freezing in there (to most people, felt pretty good to me) and there are nurses, doctors and techs everywhere.  The anesthesiologist came in and gave me an epidural and spinal block, which literally was the most painful part of the entire day, and it worked almost immediately.  They laid me down on the table and introduced me to more people and strapped me down.  It was time to start.

I never heard the words "scalpel please" only "We're going to get started now", and they proceeded and walked me through the various steps.

1) The cut (which was an obvious first step)
2) Inserting the tube in which the camera and the laser would be run through
3) "We're getting some great pictures of Baby B!
4) We're mapping out the shared vessels
5) We're going to start the laser now and cauterize these vessels
6) We're all done.

Total time a little over an hour.

I managed to sneak a peek on the video screen of them taking pictures of one of my sweet girls and it was amazing but I couldn't keep my head turned as I would feel nauseous.  I kept my eyes on the ceiling and in my head I talked to God, to my Mom and to my Grandpa who had passed just six days before.  It made the time go by faster and kept me from hyperventilating and kept the claustrophobic feelings at bay. 

They closed my incision and turned the lights on.  They started removing my epidural line and getting me prepped for recovery.  The last words from my surgeon were simple requests "Try not to cough or vomit" I agreed.  I had no feeling from the chest down so I had to be moved to the transport gurney and we were on our way to a room where I would start my monitoring for contractions and could finally eat!  Believe me when I say this hospital is not small.  The OR is on either the 4th or 5th floor I can't remember which which meant that after turning corners and going over bumps I had to ride in an elevator.  We make it to the room and they have to maneuver my gurney into the room so I can move to an actual bed.  They wanted me to try and do it but there was still no feeling in my legs. I told them "I can see my legs and I know that they move and my mind is telling them to but it's not happening" so here comes the body board - roll this way, roll that way - and go.  I make it to the bed and the room gets hot and I don't feel so well.  I couldn't fulfill the surgeons request and got sick.  But luckily did no harm.  

We stayed in the small labor and delivery room for about 3-4 hours and they moved us to an antepartum room  which was a lot bigger and more private.  I was monitored for a total of 24 hours for contractions and had only a few.  We were released to go home around 6pm the next day and I was on modified bed rest for a week and a half,  The recovery was easy and surveying the damage I have a scar thats about ____ that big.  One tiny little scar could save my babies lives.

Coming to Terms...

Identical twins aka Monozygotic twins.  

     What does that mean?  

1. Monochorionic-diamniotic twins are identical twins who share a placenta but not an amniotic sac. 

2. How does this happen?

3. To form identical or monozygotic twins, one fertilized egg (ovum) splits and develops into two babies with exactly the same genetic information. 
4. To create our type of twin the fertilized egg must split between days 4-8 after fertilization (it's like they were fighting already!) and then they embedded themselves in my cozy little uterine wall and began to grow together but separately.  They are aware of each other and can hit and kick each other just as siblings love to do, they're just getting an earlier start than most.
5. I forgot to mention in my original post that from the first ultrasound they measured a week behind so my due date was moved to January 21.  Not that it really matters because it's identical twins and identical twins don't go to 40 weeks they go 37 max.  
6. At 12 weeks we feel comfortable enough to tell the world and we had a big sister who was bursting at the seams with the news!  She had known about the twins from the first night that we knew about the twins and she had kept it somewhat secret.  We made the cute little announcement at the beach to post to Facebook and of course it got a ton of likes and comments because babies are exciting but TWO new babies gets everyone all tickled.  The "world" was on cloud nine with us.  
7. August 5 at 16 weeks we went in for our bi-weekly sonogram and they measured tummies, heads, hearts, blood flow in cords, fluid levels and told us the sex.  Now remember we were really rooting for some more testosterone for our household.  Cue favorite dog getting run over right before our eyes kind of sadness - two more girls coming our way.  I was secretly okay with it because I know what to do with girls but would be taking a huge learning curve with dirt and bugs and whatever other weird things little boys come up with.  Back to the largest section in department stores dedicated to pink and purple lacy, sparkly, floral, unicorn and kitten things.  In the world of sugar and spice and everything nice for another eighteen years.  Plus, you feel a little less guilty for wanting to match your girls in almost every outfit.  Yep, just like nine years ago I was okay with it.  Daddy on the other hand couldn't help but feel some natural disappointment.  I'm brought out of my pink haze by the sound of the fire alarm going off in the MFM's building.  The doctor quickly says "We're concerned about fluid levels in Baby A.  We would like you to come next week.  Do you have any questions?"  Well the FIRE ALARM is blaring so no questions could be formulated in my brain.  They call the next day to set the appointment for August 12 at noon.
8. There are some things you should never do alone.  One is when someone who is a high risk baby doctor says she is concerned about one of your babies is to go see her alone.  But I didn't have the dread feeling so I went by myself.  It was horrible.  Baby B was having a party in her swimming pool like she always does and Baby A, well, she didn't move.  She had turned facing my back and never even flinched.  The only thing I can equate that to is a dead goldfish in a bowl only back up instead of belly up.  My baby, the twin I never knew I wanted, wasn't moving but luckily she had a heartbeat.  A good strong heartbeat.  But time was not something to be played around with.  Dr. Connor's looks at me, who is putting on the bravest strongest face that I only pull out when I am feeling defeated, and says the words I have been dreading since we went MoDi, "We believe your babies have developed twin to twin transfusion.  We are sending you to Charlotte to Dr. Stephenson who is a fetal surgeon and she will do another scan and talk to you about your options".  I stumble out an "Okay.  Yes I understand.  Yes I've done some research".  I keep that face on until I get to my car and I call my husband and my cousin and I let the tears fall.  The MFM office beeps in and says "Dr. Stephenson wants you in her office at 7 am tomorrow morning."  I say "I will be there".  Obviously 7 am is early which means they're concerned which has me even more concerned.  
9. August 13 my husband and I make the hour and half drive to Charlotte and settle in for what is a long sonogram.  More measuring of two heads, two hearts, two bellys, two cords, two this and two that.  Little to no words are being said by anyone in the room.  Baby A is still facing my back and still not moving but hanging in there with a heartbeat.  You see, when a babies fluid environment gets to a certain low point they start using their energy wisely.  She was using her energy just to literally survive.  We then consult with Dr. Stephenson and she explains twin to twin transfusion.  

10. Twin-Twin Transfusion Syndrome (TTTS)

11. is a condition unique to monochorionic twins. This type of twin gestation has two fetuses that share one placenta. Since the fetuses share one placenta, they have vascular connections through the placenta. In TTTS, the fetuses are not sharing the placenta equally. Instead, one fetus receives more of the placental blood supply than the other.

1. Therefore, one fetus (the "recipient") receives too much blood and can become "volume overloaded". This increased volume results in increased fetal urination. While the other fetus (the "donor"), receives less of the placental blood volume and is "dehydrated" and does not urinate very much.

1. The differences in fetal urination are what result in different levels of amniotic fluid volume. If this condition is left untreated, there is an estimated 80 to 100 percent mortality

We listen and nod.  Listen and nod.  Then she talks about stages.

• Stage I is an early stage in TTTS that reveals only a discrepancy in the amniotic fluid between the fetuses. One fetus can have "polyhydramnios" or too much amniotic fluid, while the other has "oligohydramnios" or too little amniotic fluid
• Stage II is when the bladder can no longer be sonographically appreciated in the donor fetus. The bladder is present but is empty, so on ultrasound we cannot visualize this structure

• Stage III is when we note changes in blood flow through the arterial or venous systems of either fetus. The Fetal Care Center of Cincinnati has broken stage III into three groups depending on cardiac function of the recipient fetus based on mild (a), moderate (b) or severe (c) cardiac changes

• Stage IV is when the recipient fetus becomes so volume overloaded that there is ultrasound evidence of severe cardiac compromise such that the fetus is hydropic and swollen

• Stage V is when there is a demise of one fetus

Our girls are stage IIIb.  Something has to be done.  The weekend was coming and like I said before time was not our friend at this point.  She gives us a moment to talk it over.  We look at each in complete agreement that we will do whatever it takes to at least bring one baby into the world.  Surgery was scheduled for the next day at noon.

To Be Continued...

Surprise of a Lifetime!...

We have lived pretty contently as a family of three for the past almost nine years and before that a family of two for almost two years.  Our first child, a beautiful daughter with a free spirit and a knack for going from zero to diva faster than you can blink.  The day she was born was the greatest day in my memory and then we brought her home.  Within days I was ready to take her back and request a full refund!  She had colic, a milk allergy and reflux.  She cried and cried and cried and just when you thought she might be done she would cry some more.  And in those rare moments she wasn't crying it was only because she was taking the time to decorate me in spit-up.  She left me feeling helpless.  Her father and I were only twenty-two and while I had been around babies he was clueless!  Married single parent syndrome set in and yikes was that first year hard!  Needless to say we both agreed it would take some time to even think about having any more children.  She broke us.  She broke us bad.

Fast forward to a few months shy of our first born princess' ninth birthday and we start slightly discussing the possibility of expanding the family.  After all things are going pretty well.  I got hired on with our local government working with a wonderful and exceptionally supportive team.  My benefits, insurance and retirement are darn near dreamy.  We were getting close to the end stages of finally getting our dream home built.  Life is good.  And when you feel like you're finally doing something right that's when crazy things like "let's have a baby" start coming up.  So we had minimal discussions and I had some talks with the Lord about if it be His will than we will be blessed with another (hopefully more calm) baby - preferably a boy.

May 15, 2015 I realize that I'm late with no monthly symptoms and I have one test that has been gathering dust in the bathroom drawer I should pee on it for kicks and giggles, so I do.  Those lines showed up so fast it was almost magical.  I managed not to freak out like my twenty-one year old self did way back when I saw pink lines the first time.  I calmly walked myself into the bedroom where my handsome husband was half awake and told him the news.  He was as excited as a half awake person could be but he also managed not to freak out like the younger version of himself did - I felt so grown up.  I made an appointment with my family doctor that we've gone to for years now to confirm and sure enough she saw what I saw and due date should be around 1/15/16.  I was so excited!  We decided to keep it to ourselves because we knew this would be it for us and we wanted to keep it special for a little while.

The next morning  I called up the office where the OBGYN that delivered my first child now works because I mean we have history.  My first appointment is scheduled for June 5 at 9:30 in the morning which happened to also be my thirty-first birthday.  As the appointment day drew close my husband couldn't go with me.  You see he's a farmer and it had finally rained and he needed to be here planting.  It's our life I'm used to it.  So he tries to convince me to just go alone but I just knew something wasn't "right" about this pregnancy and I didn't want to hear any bad news alone.  So my best friend who had guessed I was pregnant a couple of weeks before because I had a horrible sinus infection and of course couldn't take anything worth taking to help, I asked her to go with me.  She of course said she would.  We head out to the big town of Albemarle and she had to witness yet again (she went to an appointment with me with my first and they surprised me with one) me getting a yearly exam and then we were getting a dating/heartbeat sonogram.  My how things had changed.  I didn't see my first baby until we were 18 weeks.  I walk into the ultrasound room so excited for my first birthday present and I confidently say to the tech "Tell me there's only one and there's a good heartbeat and I will be on my way".  She looks at me and I look at her and she says something along the lines of "I can't tell you that, there's definitely more than one".  I reply with a "Are you serious!?".  I mean what else would you possibly say in a moment like that?  It was then followed by a long string of "Oh My God!  Hollie did you hear that?  Oh My God.  This can't be real life." on repeat.  She proceeded to measure their  heartbeats and I continue to live in the land of "Oh my God".  Then she brings the OB back in and begins to explain to me that he believes from that sonogram that we are having what they call Monochorianic Monoamniotic (MoMo) twins.  The most dangerous type of twin to carry besides conjoined.  Mama bear automatically kicks in.  I ask him will they make it?  What are their chances?  What do we do?  They scheduled me to see a maternal fetal medicine specialist (MFM) and she will take a better look with a better machine and we can hope that she will discover a membrane separating these two little miracles.

I go home still not believing, even with photographic proof that we - the people who waited almost nine years to decide we were ready to have another baby - were having twins.  But it was like finding out we were having two blessings and being served their death sentence all in one day.  It was a lot to take in.  I take rest of the day off from work and jumped on Dr. Google.  I already knew there was going to be more doom and gloom than sunshine and roses.  I learned that the umbilical cords could tangle and stop flood blood flow for one baby or both and if one baby goes there was a slim chance of the other one making it.  I discovered that I would be expected to go inpatient at a hospital with a high rated NICU (which meant at least an hour or more from home) starting at 24 weeks and the absolute max I would be allowed to carry would be 32-34 weeks.  I was scared to move.  I felt like every movement I did make would cause them to tangle up and die.  It took awhile to sink in that there wasn't much I could do to stop my babies from moving.  I had to give it all up to God and pray for a miracle.  We also started sharing our news with close friends and family, after all we needed all the prayers we could get!

July 1 my first appointment with my MFM finally rolls around and my husband who is still under twin shock goes with me and BOOM!  there it is - "the miracle membrane".  My babies are officially separated in their own amniotic sacs.  They are now classified as Monochorionic Diamniotic twins.  Now a little twin lesson so this will be easier to understand.  All Monochoronic Monoamnitoic (MoMo) and all Monochoronic Diamniotic (MoDi) twins are "identical".  The term identical is a loose term because each child will have their own set of fingerprints and there will be subtle physical differences.  Each child is an individual with their own personality who just happens to have "identical" DNA.  We wrap up our sonogram with her with a "Congratulations and we will be seeing you every two weeks until delivery day" because MoDi twins come with a whole different set of concerns.  But from that point on we allow ourselves to feel some excitement again.

To Be Continued....