Tuesday, May 15, 2012

Aeden and Noah's Story

     I found out that I was pregnant New Year's Day.  We were surprised and excited and anxious.  Of course, we had to wait several weeks before we actually got to see a doctor, so 28 days later we made our way to the doctor excited to hear our baby's heartbeat for the first time.

      At our first appointment we went in for the sonogram and it was very exciting until the technician said, ,"Oh...wait a minute..."  It got very scary for a few seconds until she identified a second heartbeat.  We were having twins.  Next the technician checked for several other things and was worried that she could not find a septum (the line between the babies indicating that they were in two separate amniotic sacs).  However, she and our doctor assured us that they would probably be able to see it at our next appointment  and scheduled a follow up for one month later.

     At our next appointment, one month later (13 weeks gestation) they were only really concerned with finding the septum.  I was amazed at how my little beans had turned into little people and looked like they were boxing each other.  When the technician excused herself to get the doctor we got worried.  It was kind of like one of those moments in movies when the doctor gets a concerned look on their face and give the parents terrible news.  The doctor came back to the room with the technician and started giving her instructions.  After a few minutes the news came..."We can not find a septum between your babies.  Let's go over to the exam room so we can talk about what this means."

      The details were scary.  Mono-amniotic/Mono-chorionic twins happen in only one in 10,000 twin pregnancies.  There was a 50-60% chance that one or both babies would be still born.  In addition, because they were split from one egg, there was a high chance that one of the babies would be born with some sort of defect ranging from heart, lung, spinal, renal, or brain defect.  It was a lot of scary stuff to hear, but there was still a chance that there was a septum and the ultrasound equipment was just not advanced enough to locate the divide.  We were referred to a perinatal specialist in Shreveport, LA (which was two hours from our home) first in hopes that their advanced equipment would find the septum, and second to give us a physician would could properly care for our very high risk pregnancy if they did not find the septum.

      The following week we made the trek to Shreveport to find out for sure what we were dealing with.  They did not find a septum.  The doctor also gave the ultrasound technician a series of directives, "check the hips, check the stomach, check the back, check the chest, etc." and then finally informed us that he was worried that they were conjoined based on the photos he had been sent.  What?!?  We had no idea that was even a concern.  Immediately following the ultrasound we met with the doctor where he gave us all the gruesome details again.  He also offered a selective termination in which they could terminate one of the babies in order to give the other a better chance of survival.  No Way!  I responded by simply saying, "no...that's actually isn't an option."  He warned us of the tough road ahead.  I would see him in Shreveport monthly, unless something more serious arose, I would see my doctor at home every two weeks.  I would go on bed rest at home at 20 weeks and begin seeing my home doctor every week.  At 24 weeks I would be admitted into the hospital for continuous monitoring and would remain there until the babies were born.

      Then the fun began.  We continued living our lives knowing that one way or the other our lives were going to change.  We both still had the stress of our jobs, preparing and taking bands to contest, in addition to the stress of the pregnancy.  Everything went along without a hitch until our appointment at 20 weeks in Shreveport when they began to check out organs.  The organs looked fine, but they did discover a single umbilical artery in twin a which could be a sign of defects that could not be detected on the ultrasound.  We would just have to wait until they were born to find out.  (This is probably the reason for Aaden's hemi-vertebrae and horseshoe kidney)

      I also began bed rest at home at 20 weeks and so instead of my days being filled with the stress of my job it was filled with the what ifs of my pregnancy.  The only thing that kept me sane was feeling them move and the security of having weekly appointments to be sure they were both okay.

      At 24 weeks I was admitted into the hospital where they monitored the boys twice a day for a few hours.  At first they were still small enough to move around quite a bit so it was very difficult to monitor them effectively so many times the monitoring sessions took quite a long time.  Things went along nicely for two weeks, then one night, right at 26 weeks, the boys began having issues.  Twin A's heart rate was dropping pretty low and staying down for too long so they began to prep me for surgery and gave me the steroid shots to speed along the boys' lung development.  For about a week I stayed hooked up to an IV while they continued to monitor the boys 24 hours a day.  I also began having contractions during this time so they gave me all sorts of drugs to try to keep them at bay.  When I was finally taken off continuous monitoring and allowed restroom privileges again (and allowed to take a real shower!) things seemed better.  I was at 27 weeks and had only 5 weeks left until they would take the boys.  Things seemed fine.  My parents came to visit and my mom was going to stay with me for a couple of weeks.  She just had to make one trip back home for a doctor's appointment and then she would be back for the long haul. Josh was busy doing drama camp in Henderson during this time so the plan was that mom would keep me entertained so that Josh wouldn't have to travel back and forth so much.  Mom left on a Sunday for her appointment (Father's day actually).  The next day I was feeling down so I called Josh to ask if he would come for the night.  He agreed without any argument and I immediately felt better.  He brought me food (it's difficult to live on hospital food) and I enjoyed that before I began an unusually late monitoring (there had been a ton of births that day so I didn't start my first monitoring until late, moving my second monitoring back later).  This turned out to be a blessing in disguise.  About 8pm Twin A went into distress and stayed that way for too long.  The next hour was one of the craziest hours of my life.  People were in and out of my room, nurses, doctors, anesthesiologists, all the while all I can think about is my baby being in distress.  I was finally wheeled (ran really) down to the operating room and within 15 minutes my babies were born and I entered the most stressful time of my life.

 Noah at 28 weeks gestation

Aeden at 28 weeks gestation

      Aaden was born with an APGAR of 0 and had to be revived. His umbilical cord was completely white and the doctors had no idea how long he had not been receiving blood. His 5 minute APGAR was a 3.  Noah was born with an APGAR 3 and his 5 minute APGAR was an 8.  Noah was only on the vent for a few hours, Aaden for a few days.  It was so difficult to see my babies hooked up to so much equipment and not be able to hold or comfort them in any way.  The first week was pretty uneventful until Sunday.  We had just left the hospital for the night and decided to go to Henderson and stay with Josh's parents.  We got a phone call from the NICU before we got there telling us to come back immediately.  We got no other info except to come back.  I have never prayed or cried as hard as I did during the 45 minute drive back to the hospital.  We called once during the trip to get the same info, keep coming.  When we arrived we ran to the NICU and the doctor met us at the door.  Aaden had been in distress.  He had fluid on his lungs and he had almost died.  He was stable, but still considered critical.  I'm still unclear as to what happened, but it had to do with his pic line.  He was returned to the vent and that was how we experienced our first thrill on the roller coaster ride of the NICU.  I still get teary when I think about it.

      Noah had a similar scare later that week, but it did not escalate to the same level that Aaden did because the nurses were much more attentive because it had happened to Aaden.  The boys continued to slowly improve.  They had good days and bad days and our days directly correlated with theirs.  The were in the NICU for three months and came home one week before their due date.  They were still on heart monitors when they came home, but they were home.  Besides some developmental delays they have been great.  They are perfect.

      This is why I march for babies.  If I can help prevent even one family from experiencing the same scary things we went through then it is worth it.  Since the boys were born, just three years ago, they have upgraded the percentage from 50-60% chance of stillbirth to 70-80% chance of survival in mono mono twins with proper care and monitoring.  March of Dimes helped with that and so I will continue to march so that one day maybe mono mono twins will no longer be a high risk pregnancy.

     I never thought I would experience something like this, but it happened to me and it could happen to anyone.  I am thankful for all the people who donated and marched before me, and I will continue to pay it forward as long as I am able.

Wednesday, May 2, 2012

Our Babies Without Borders

 Our Babies Without Borders
Belladonna Marie and Blaize Andromeda
    On September 9th I was watching a rather gory movie "Parana" and all of a sudden began to crave a sugar cookie so badly I could smell it! I then remembered how sensitive and sore my breasts had been the past few days and all of a sudden it hit me.... I must be pregnant. The next morning in pajamas and all, I went to the store with my husband and got a test. I rushed home to take it and sure enough, the line was dark as could be, I was pregnant. It seemed a little early to me to be experiencing such strong symptoms, seeing as I could only be about 3 weeks along, but I didn't over think it. I scheduled a doctor's appointment and went in later that week. My mom had been joking about it being twins, considering I had 6 sets on my Father's side of the family and one set on my Mom's that had just been born that month.

      I was sure to ask the Doctor on the first appointment if there was one or two babies. He said it was too early to tell, but so far it only looked like one. The second appointment I made sure to ask again and same with the 3rd... Still one baby. When I was 12 weeks i had an appointment with another doctor to get the baby's neck measured to check for down syndrome. The ultrasound tech began the ultrasound and had the strangest look on her face. She kept looking at my file and back at the screen. She excused herself from the room, at which point my husband and I looked at each other, both worried something was wrong. When she came back in about 3 minutes later I finally asked her what was going on, and she asked me what we knew about the pregnancy, and I told her not much considering it was so early, just that THE BABY had a really strong heart beat at our last two apts, enough that the doctor had even commented on it being so strong... She said, "Well that's because there's 2 in there!!" She then continued to say that a specialist would be coming in to talk to us though, because she didn't see a membrane and he would have to look. At this point I was unfamiliar with what this meant or whether it was a good or bad thing. My husband and I sat staring at one another both overjoyed and overwhelmed. I didn't know what to think... or feel... excitement? nervousness? anxiety? fear? happiness? I was one big bundle of feelings that just couldn't settle! The doctor came in and did his own ultrasound. He continued to tell us congratulations; However... There was a however...

      He explained the difference between Mono/Mono and Mo/Di. That mine did not have a membrane to separate, and this could often be troublesome. He told us to tell the family but be aware and make others aware that there was a 50% chance we wouldn't be having these babies. My hopes weren't crushed quite yet though because he seemed confident, so I was too. He told me to schedule an appointment for tomorrow with my regular doctor and that he, being a high risk doctor would see me back in a week to discuss it further. When we went back to our normal doctor and told him what was going on, he moved us from the US room and into his office, closing the door. All I could think of was every movie where the doctor was giving a negative prognosis in his office, and wondering how many hearts had been crushed in this very room. he was very nonchalant and to the point. "There's a 50% chance your babies wont make it. I've delivered 2 sets of Mo/Mos and both ended badly with dead babies and the mother was almost to term. The cords were so jumbled it was a huge mess. I recommend termination, but hey, take 2 weeks to think about it and come back and let me know and we'll schedule a D&C." I couldn't even think of anything but how badly I didn't want to be anywhere near this jerk! On our way out he opened the door for us patted me on my back and said, "Don't worry, your obviously fertile, you can always try again." Smiling. I left shattered and in tears, going home and climbing into bed, wanting to escape this huge decision I was actually considering!!!! I hopped online and did even more googling... Negative Negative and more Negative stuff.... Finally a page, Monoamniotic.org BBS stream. A Chat? Okay. A support page. I immediately started and account and began talking to people. Everyone told me the same thing. Stop considering termination. Give them a chance. Yes its risky, yes its scary, but 50% is a chance. They didn't have to tell me twice! Looking at all the pictures of healthy, beautiful, happy twins, was all I needed to turn around my attitude and get positive. Yes, we had a long hard road ahead of us, yes, we would be traveling it. The next morning I went to my Doctors office to tell him I had made my decision to keep them and get my file to transfer over to the high risk group because I didn't want to see him anymore. He had me wait for 3 hours. I walked back, got my own file, and took it to my new group of Doctors.

     Day after day I woke up positive, but terrified. Would I feel them move today? Week after week we went to the doctor, Would they see two heart beats this week? Month after month was so bitter sweet. We had hit another milestone, and as the risk for strangulation went down the risk of compression went up. My doctors and I decided to do inpatient at 28 weeks. I was admitted and we planned to do the C-section at 34 weeks.

      Unlike many, my inpatient stay was uneventful. I had small contractions I never felt, no significant decels, no problems at all.

     On March 26th, 2012, I was 34 weeks pregnant. I went into the surgery room scared out of my mind at 7:45 AM, and at 8:17AM I saw my first beautiful baby girl Blaize Andromeda, and when they pulled her out my second baby girl's legs came with her... They unwrapped my second miracle baby Belladonna Marie from the cord that was loosely wrapped around her tiny self 3 times. Blaize was 4.6 and 16 inches long. She came out crying, eyes wide open. Bella was 4.1 and 16 inches long, but came out grunting. They suctioned the fluid from her lungs and let me kiss them both before they went to the NICU, my husband followed behind them.

Beautiful Bella!!

 Gorgeous Blaize!

     8 Hours later I met my sweet girls. Bella had been on Cpap for 3 hours but had already come off. Both were breathing fine on their own and Blaize had minor problems with her blood pressure but after a shot it had straightened itself out.

      They were both perfect, healthy, beautiful little girls!

     Over the next 3 days they moved rooms 3 times! Each room closer to home. The 3rd room was called the Fat Farm. Only for feeding and weight gain, and then they would be home. On Wednesday, April 5th, only 10 days after birth, Blaize came home! On Saturday Bella followed! :) Both back up to birth weight after dropping into the 3 lbs range. Our girls were home and our life could begin.

     My girls are now exactly 5 weeks old and doing wonderfully! Blaize is 6.3 and Bella is 6lbs! They are both 18 inches now! Neither one has health problems of any sort and they are so smart and strong!

     I am so thankful to all the people who supported me along the way from the MoMo Site and Facebook pages. I'm thankful to my husband, family and friends, and all their support and prayers along that rough journey. I'm thankful for my doctors, and nurses and for them doing all they could to make sure we were all safe, healthy, comfortable, and well taken care of. I'd like to give a big middle finger to my first doctor who had no faith in not only me and my babies, but in himself as a medical professional. Thanks for being an inconsiderate ass and chasing me into the care of the best doctors anyone could ask for! :)

     We are so fortunate and happy!

     So to Mommys struggling with the same or similar situation, just keep hope, keep faith. Everything will work out as it is supposed to.

     Don't be afraid to stand up for yourself, your care, your babies care, and your rights as a Mother and Patient.

     And don't be afraid to talk over your feelings with someone supportive that is in a similar situation. Its okay to be scared. Its okay to be stressed out. Its a scary situation. But stay positive for you, and for your babies. :)

-Dani DiCapua
and Blaize and Belladonna