Monday, August 25, 2008

Beating the odds

I am known as "sweater" in my online life.

My husband Jason and I knew we wanted children from the moment we were engaged. Shortly after marriage, I got pregnant around Christmas time 2007. I had a fairly easy first trimester without the classic morning sickness that many women experience. I only had one doctor appointment and everything was great. My doctor recommended that I didn't come in for my 2nd appointment to try and hear the heartbeat via doppler until I was closer to 14 weeks pregnant rather than 12 weeks due to my tipped uterus. She felt we'd have a better chance at hearing the heartbeat if we waited a little longer. 

Jason and I were really excited to hear proof that a baby really was there! I had a dream the night before this appointment that Jason and I were sitting at our kitchen table with two brown curly haired babies in their high chairs eating dinner. I told Jason about the dream when I woke up and we laughed that my dream must’ve fast forward a few years since there were two children. This dream came to give me strength and hope much later in the pregnancy.

A nurse practitioner was performing the appointment that day. I explained to her that I was experiencing some intense pains once in awhile and she looked concerned. She said that the pains I was describing are pains that I shouldn't be feeling yet so soon in the pregnancy. She then went on to tell us to not be upset if we don't hear a heartbeat and she feared that I had an ectopic pregnancy. As she put the doppler down on my belly a loud strong heartbeat was heard immediately. We were all smiles in the room. The doppler was then moved to the other side of my belly and the heartbeat was picked up again. It was a beautiful sound...that suddenly sounded like a horse gallop. I took my eyes off my husband and looked up and said, "Is that.." and my sentenced was finished by the nurse practitioner with the word "TWO".

She then said that they've never picked up on twins with a doppler before and that it was HIGHLY possible to just be an echo. Although she did not look convinced that it was an echo. She said she was getting readings of 140 and 160 bpm and that it was too far apart. So we were sent to the hospital the next day for an ultrasound to just "check it out". Of course Jason and I were convinced that it must be "just an echo".

We went to the hospital the next day excited at the chance to peek in on our baby early since we were only going to get one ultrasound at 20 weeks. During the ultrasound we definitely saw TWO little gummy bears on the screen. We were shocked and beside ourselves with every emotion possible.

My doctor called me the next day and asked that Jason and I come in that afternoon to discuss the big news since this would certainly change my prenatal care. During this doctor's visit we were told that the ultrasound tech did not see a membrane separating the twins. All the different types of twins were explained to us with a chart. We were told that our babies shared a placenta and gestational sac and POSSIBLY an amnio sac as well. Apparently if identical twins split too late, an amnio sac has already formed around the egg since the body thought it was going to be one baby. This is called mono amniotic-mono chrionic. If it were to split any later the babies would then be conjoined.

Since mono amniotic twins are sharing an amnio sac, it means they are actually touching each other. This is extremely dangerous since their cords can wrap around each other and create many knots.

My doctor sent us back to the hospital the next day to be seen by a Perinatologist to look for this very important membrane separating the twins with a level II ultrasound. We were told that they were highly unlikely to be mono amniotic twins since it’s so rare. I believe the doctor said “you have statistics on your side”. The doctor also told us she’d never had a patient with this condition either. 

Jason and I left that appointment feeling confident about our next appointment with the specialist. I did of course go online and search the web for everything I could find related to this mono amniotic thing I was going to go see a doctor about.

The information I found was devastating. I found myself printing off countless sheets and highlighting startling facts and information. I suddenly became TERRIFIED and just had a feeling. We all know that feeling. This was the night that I introduced myself to the ladies of the MULTIPLES board on The Nest. I had been a member of The Nest boards while trying to conceive and I was also no stranger to the 1st and 2nd trimester boards. I was scared out of my mind and turned to complete strangers for support.

The ladies of this board wrote me encouraging words and their own personal experiences with possible diagnosis of this condition. Even though I was assured that no other member of the board had this rare condition, that it was still something that could be overcome if I did.

I’ll never forget that appointment the next day with the specialist for the rest of my life. We could see the babies were boys immediately and just watched in amazement at the clarity of this level II ultrasound compared to the first ultrasound we saw just days before this. When the doctor confirmed to us that the babies were in fact mono amniotic I can only describe the moment as if I were just told that the world was coming to an end. I asked the doctor if the statistics I found online were true or up-to-date and he shook his head sadly confirming the grim news.

I had a 50% chance of the babies surviving and the statistics fell lower and lower after that of them being “normal”. I was told that IF I make it to viable age (24 weeks of gestation) that I have to live out the rest of my pregnancy in the hospital to give the babies a better chance of making it. I would have to be monitored every week by the specialist leading up to this hospitalization as well. The babies would HAVE to be delivered via c-section by 32 weeks IF I were even able to make it that long. We were told that it was very common to see one or both babies gone at any of these monitors due to the harsh knots in the cords that can occur.We were of course given options of selective reduction to give at least one baby a better chance.

We started this long road of countless specialist appointments along with my regular OB appointments. Every appointment with the specialists left me in tears because of all the other possible complications we were watching that happens with most women carrying identical twins (TTTS, IUGR etc...).

I finally decided that enough was enough and I could not continue the pregnancy with the thought that my boys would not make it. I decided to plan for their arrival and to just do whatever was asked of me. We attended every appointment asked of us, and I prepared our home and my life for the boys to come.

I left the life I knew and checked into the hospital on May 21 and made many friends along the way with hospital staff and all my best girlfriends online on the MULTIPLES board on The Nest. I’ve counseled many other women on that online community who feared the same diagnosis. 

I had lived every moment of that stay knowing that at any time they would have to take the boys if one of them distressed on the monitors. We were watching my little baby (Baby A – Jaxon) very closely since he had much less blood flow in his cord due to tight knots in his cord. His weight was significantly less than the other baby so I was constantly worried about him.

I had been in the hospital for over 7 weeks and had my c-section planned for July 17. Three nights before this anticipated date, I was conducting business as usual and had gotten ready for bed along with my 10pm nightly monitoring. Jason kissed me and left the room to go home for the night right as my nurse was entering to hook me up to the monitors. Within moments of being hooked up, Jaxon’s heart rate plummeted and my room was filled with doctors and nurses. I've never experienced the feeling I felt when I knew the baby was about to be gone.

They said I had to be put under immediately as they started to rush my bed into the operating room. I didn’t even know if they had contacted my husband as they were running my bed down the hall, trying to put in an IV and just pulling up my pajamas to perform the surgery. I was hysterical since I wasn’t able to see since they pulled my glasses off my face and I didn’t know if the doctor on call knew if they boys were mono amniotic. I had a beautiful day planned for my surgery with my favorite nurses and the specialists there to perform it, and of course my husband at my side. None of this happened. I thought the doctors were cutting me before I was put under and then I was out.

I woke up as they were pulling the tubes out of my throat in the recovery room. My husband was standing next to me and came close to my face so I could see him. He looked exhausted and I suddenly realized where I was and felt paralyzed by fear. He suddenly held up a micro-preemie diaper and told me that we had a baby boy in each one of those diapers. I sighed the biggest sigh of relief I’ve ever had my whole life. He also whispered that they cut my from the belly button down to get the boys out. This was definitely not the birth I had hoped for or planned. I will always morn the loss of the “moment of birth” that I so looked forward to all those long days in the hospital. But I can’t really complain since my boys are here.


Baby B – Brady weighed 3lbs, 5 oz.

Baby A - Jaxon weighed 2lbs, 7oz.

Brady came home from the NICU just after 4 weeks, and Jaxon after 3 months with some complications that have led to further hospitalizations. Jaxon hasn't known a life yet without feeding tubes or oxygen due to a severe case of infant reflux. 

This has been the most emotionally challenging road that we have ever been on. I think my husband and I have been through more together in our first year of marriage than some people have in 50 years of marriage. There have been many other things along this ride that have happened as well that has just added bumps along the way. Those common sayings of “When one door closes, another opens” and “You’re not given more than you can handle” have new meanings to me. I never thought in my whole life that I’d be at a hospital every day for 5 months straight without an end in sight.

Through all this I still feel like the luckiest person in the whole world. We still have a long road ahead of us – everyday is still certainly heartache and a challenge, but each day is also filled with the love of my miracles. I have TWO beautiful babies, and the ladies remind me of this everyday in my online world. I look to them everyday for support, guidance, laughs and sometimes to just talk about girl things. They have become my rocks. They got me through countless hours, days and weeks when I was in the hospital. We share in each other's happiness, joy and sorrow on a daily basis. Our hearts break for each other and we celebrate each other.

They have shown me and reminded me that random acts of kindness really do exist. And because of them I will certainly pay it forward to as many as possible that follow me.

We beat the odds….we really did…and I'd love to beat a few more.

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