Our Journey: Finally put down on paper!

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!