A year after the girls were born I tried to write my pregnancy story and I just couldn't do it. Several months ago I was able to sit down and get what I wanted to remember and recorded for the girls down on paper. Many people have asked me for it and I couldn't do it until recently! Here it is..hope this brings hope to all those who are on a TTTS journey.
Our Journey
After dating for
almost two years and being married 9 months, my husband and I decided we wanted
to start our family. We had talked about this so very often while dating and
knew we both wanted to be parents! I stopped taking the pill and a month and a
half later we found out we were pregnant! We went to our first prenatal
appointment and left with shock and tears. I would have never ever ever
imagined. We were pregnant with triplets! I was more scared and shocked than I
have ever been in my life. All I could think about was how in the stinkin’
world are we gonna handle this? I felt so guilty for feeling scared because I
had so many friends who were dealing with infertility and would be over the
moon excited to have THREE babies! I am a worrier! I was worried about the
financial side as well as all the things that could go wrong!
On a Friday night, around 12 weeks, I became very sick to my
stomach. I was ALWAYS sick to my stomach but this was different. I began
running fever and having an unusual amount of vomiting. I never passed anything weird and woke up
Saturday and felt much better. I had my first high risk appointment on the
following Monday. They began doing the
ultrasound and I heard some hum’s and huh’s while they were doing it. I haven’t
seen too many ultrasounds but I knew what I saw. They then told me what I was realizing, we
had miscarried one child. I was so overwhelmed by the thought of three children
but had come to realize it was a huge blessing and finally accepted it and
fallen in love with all three of them. So many emotions came up that I would have
never imagined I would feel. I was heartbroken. I saw those amazing three
heartbeats and now there were two. This also made me so fearful of something
happening to the two precious children I was now carrying. This journey was
already exhausting and what little I knew what that it hadn’t even gotten
started yet.
Several weeks had
passed and it was time for our “big ultrasound.” We were so very excited! My husband and I had
felt for several weeks that we were having girls! They had already told us that our babies were
in one sac and shared one placenta (Mono/Di). So, we knew they were identical;
we just needed our suspicions confirmed. After the sonographer measuring each
little precious body part we found out, as we suspected, we were having
identical twin GIRLS! We were so very excited! Then our perinatologist started
looking around my belly himself. I will
never forget his next words. “I need to show you something.” He went on to
explain something called “twin to twin transfusion syndrome” which I had
already goggled and educated myself on. This is a possibility in all mono/di
twins, twins that share one placenta. I thought things were going ok because
the girls weighed very close to the same according to the ultrasound they had
just done. He then went on and showed us the amniotic fluid discrepancy. Sydney
had a significant amount of fluid and Lexie looked as though she was trapped
with saran wrap. With mono/di twins they are separated by a thin membrane that
moves based on the fluid on either side. Due to Lexie not having much fluid at
all, she appeared trapped. He then told me not to get on the internet. He said
not to read anything. Really? I knew he was doing his job by trying to protect
us from the possibilities but telling an educated person especially a Registered
Nurse not to inform themselves on TTTS was unrealistic. TTTS can be deadly for both children. The donor (who "gives" all the fluids/nurishment to the other twin) can go into renal failure and multi system organ failure because they have no amniotic fluid to keep those kidneys functioning. The recipient (who has all the fluid) can go into congestive heart failure due to the workload of the heart to pump ALL that extra fluid. It is very scary and life threatening for both twins. After crying the entire
way home, I had to know possibilities. I broke down. The thoughts and possibilities
were so much to absorb. I then emailed Mary from the TTTS foundation and spoke
with Shannon Barringer, a genetics specialist, at UAMS. I just needed answers.
Answers that no one could give me right then. I was sent down to my knees in prayer.
As a Christian, I knew that none of this was a surprise to God. He knew this
was my journey and He was going to be there every step of the way. I was given
such a peace about our girls. I still had some days that were trying after
that, but I never felt him leave my side. I always had a “peace that passes all
understanding” about my babies. Now I needed a plan. Where do I go from here?
What do I do? Is there anything I can do? This journey wasn’t getting easier,
but I needed to know what this fight was going to entail.
After putting a
prayer request on the TTTS page, Mary sent me an email that night. She called and spoke to me that night. Mary works with Dr. Julian Delia. Dr. Delia
is a TTTS specialist and the first surgeon to ever perform intrauterine laser
surgery. They mailed me information and
helped calm so many of my fears. At 16 weeks I was put on left sided bed rest.
This is something that Dr Delia stated was crucial and my perinatologist was
onboard to do whatever it took to get our girls here healthy. I was also told to
drink 3 Boost drinks each day. Due to the unusual amount of amniotic fluid I
had because of TTTS, I was never hungry and ALWAYS nauseous. But, if drinking these drinks and lying on my
left side 24/7 was going to help, I was willing to do it!
Our fluid levels
stayed pretty consistent until 26 weeks when Sydney had a huge insurgence of
fluid. I was also contracting. They admitted me to UAMS. They were preparing me
mentally for a C-section. I knew this was not the day! These girls were not
ready and they needed the biggest shot for survival! They needed more time!
They started me on Magnesium, the drug from hell. After 6 hours my contractions
finally calmed down. They preformed an amnioreduction. They removed 2 liters
from Sydney’s side and I felt so much better! Little did I know that this fluid
would take no time to build back up. We were at TTTS stage 2/3 right now. After
26 weeks, they no longer would perform the laser surgery due to the high risk
of the surgery. From 26 weeks until I delivered, they removed 1-2 liters of
fluid every other day from Sydney’s side. This lowered the risk of her having
heart complications as well as lowering the risk I would contract and then go
into labor.
After being in
the hospital for 4 weeks, they finally let me go home! By this point I could
tell them if my levels were high and needed an amnioreduction. I could usually
guess how much Sydney was going to have by the way I felt! The following Monday morning, July 2, I had a
checkup. I was pretty sure that morning that I was going to have babies by that
afternoon. I couldn’t breathe, was vomiting severely and just felt like my
fluid levels had tripled. Sure enough, they had. They sent me to the labor and
delivery unit at the hospital after doing an intrauterine ECHO on Sydney and
noting that she had some thickening of walls of some of her heart valves. They had given me steroids a few days
prior for lung development in case I had to delivery early. I was ready.
Lexie and Sydney
were born on July 2, 2009 at 32 weeks 6 days. They were immediately intubated
and given surfactant and extubated. They were only on a nasal cannula for 3
days! We are so thankful to the March of Dimes and their grants for research
for this such as this surfactant! Both
girls were put on bili lights off and on for the next week. They were finally
able to get out of isolette’s at 14 days! They could now regulate their own
body temperature. Sydney was discharged from the NICU after 28 long days. Lexie
was not able to go home yet due to apnea and feeding difficulties. Lexie finally got to come home after 32
days. I will never forget our NICU stay.
It was by far the hardest part of this journey.
The night the
girls were born I got a very unusual headache and lost my vision. I was also
having bleeding along my c-section incision that would not resolve. When they
checked my blood pressure it was 246/128. I had so much edema which I had not
had the whole time I was pregnant. I started running a high fever and was
having rigors. They put me on blood pressure medication and antibiotics that
night. Due to the severity of my situation, I was unable to visit Lexie and
Sydney for several days. When I first saw them there were so many mixed
emotions. It was most definitely not the baby/momma connection you see on
television or always dreamed you would have.
It was strange and heartbreaking. That day I was unable to hold them due
to how weak I was. My body had been through so much. The next day I was able to hold both of my
precious girls at the same time. What true joy!
I had been waiting for this moment for so long!!
After both of my precious babies got home and in my arms I
was complete! This was a journey like one I would never imagine or expect. It
is such a blessing to know that none of this surprised my God. He KNEW this was
going to happen. He also KNEW the outcome. I look at Lexie and Sydney and
remind them daily how much God loves them. I can only imagine the plan He has
for them. I also know that raising these sweet girls will probably bring a
little tears and stress. But I also know
that just as my God was with my when this unfathomable journey started, he will
be there until the end.
Our NICU stay and this journey taught us so much. Life is
fragile and so very precious! It’s PEOPLE that matter most! Having these two
little precious people in our life is such an amazing gift and what keeps us
going!
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