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

Friday, April 13, 2012

Against all Odds ~ Ruby and Megan's Story


           It was decided quite soon after having my son, now 2, that I wanted a 4th child.  I hated the odd number it seemed my daughter was always pushed out.  So when in the summer of 2010 I found I was pregnant again I was over the moon.

At around what I thought was 6wks I was sent for a scan as I kept spotting.  When we arrived we were sat in a room full of bumps as I was looking at a display I noticed a poster about multiples and I pointed and said to Danny, “can you imagine if they found this!” His reply was, “don't joke Sarah, 4 is going to be a handful.”
Ten minutes later we found ourselves being asked if I would mind an internal scan.  It was very quiet in there and the sonographer didn't say too much and I agreed for the internal.  After a few minutes she said “could you excuse me for a minute” and came back with a doctor.  We were then told they had found on the internal scan 2 little pulses!.

We were then told we would be left for a week then sent for another scan to see a little more.
We went for another scan at 9wks and this is when we were told they thought they were mo/di but they could see where a membrane started but couldn't see where it finished; it just seemed to disappear.  We were told very minimal at this point as it was still so early.

I was told I'd be sent for a more in depth scan at 16-18wks.  Only I didn't get that far.  I was picking up my son from school a few days later and he was running ahead.   I was 2 streets from home and I suddenly doubled over in pain and then the gush! Blood everywhere! I started crying and my son, love him, managed to call my mum. My mum came to collect me (she works in our maternity department) she told me she'd take me home because there was nothing the hospital could do so early.
We went home and she called the hospital again they told us they couldn't do anything other than let nature take its course.

I went to the hospital the following morning again for a scan only as soon as the scan started saw one heart beat.  I started crying and saw the other! Wow what a relief!  They went on scanning and again a doctor came in and this is when I was told I had a ruptured subchorionic hematoma.  The sonographer said it was a miracle they had survived the stress!  The doctor now thought he should talk to us about TTTS! and we were also told that the membrane was floating around so my babies had become mo/mo.  This is when selective abortion was discussed to give the stronger twin a better chance.

We didn’t even need to talk about it as they had come through so much already!
At around 12 weeks we were told there was quite a size difference and TTTS was high risk as one of the twins (smaller) was showing a large nuchal translucency but this also occurs in Downs!  So much to take in! We were also told that something called the Ductus venosus was reverse flow on the smaller twin when you would expect them to both be positive flow!

At 14.6wks I was referred for a cardiac scan and another ultra sound with a consultant.
At this point I was really worried still about reverse flow and that large nuchal.  Nothing looked in our favour  and I was told to go back again at approx 16wks.  At 1 day short of 17weeks I had another scan and everything had seemed to stay the same, happy nothing had got worse and we waited to see the consultant. We were taken into a side room again and the selective abortion was again discussed by him! and if we wouldn't consider that then at least consider an amnio (no no no) leave them be!
We were told these type of twins were a freak of nature and not fully understood! and that 1 in 4 of these pregnancies will end badly!

We left with his words hanging in our minds, “you have until 24wks to go ahead with selective abortion.”  From then on for 48hours before an appointment I felt so sick and nervous!  I was at the hospital fortnightly and my community midwife the weeks in between! At 24 wks we were back again with the consultant and was told they could see a totally disconnected membrane floating around and the cord was very tangled;  he told us it looked like a pretzel.

We were still told at this point the smaller twin was showing lack of life and had only 25% chance of survival and by not having the selective termination we were putting both at risk! No, we'd made the decision we were giving our babies both a fair chance!  At 26wks at the next scan I had gone in extremely upset after what had been said at the previous scan. We saw a lady consultant this time and we were told by the consultant that our previous consultant we had didn't mince his words and wasn't very compassionate!  We nick named him Dr doom!  Anyway I told this consultant that I was worried about her growth and she told me she was looking to be improving.  She then asked if I would like to see them;  I must have looked confused as she said its ok, we can have look with a more advanced scan.   I was so excited and wanted to see this twin more than the other. 

She was perfect so how on earth could we terminate her!  I managed to get to 27wks and I was little uncomfortable most of the day and was advised to go to the hospital if anything got any worse. By early evening I had what I would describe as intense contractions so to the hospital we went! Here we go!,  I was so scared, they put me on steroids and after a week of being in I was discharged and told to come back if anything, no matter how small, happened!  When I got home I got the 3rd degree about taking it easy feet up etc from Dan and my mum.

My mum knew more than she would tell me or Dan, although she’s told me since that on many occasions she said to my dad that if something was going to happen to these babies, let it happen sooner rather than later! My dad maintained to my mum all the way along they'd make it, they had their mother’s blood running through them.

I started research online and actually got quite scared that my consultant actually didn't seem at all worried!  When we saw him again I put this to him and he said it’s not proven that inpatient or increased monitoring increase the survival rate. He believes it depended on life style and how you could harbour these babies.   So we carried on and made it to 33.1wks.  I had been booked for a section at 34wks after being told the cords would start getting real tight because of the size!

Although this would depend on the state of SCBU and space.  At 33.1wks I had really bad back pain at the bottom of my spine and I'm thinking “woozers these buggers are breaking my back.”
I had just settled down for an evening in front of the TV and Dan was getting ready for work when Eastenders started. We watched it and just as it finished I stood up and got a shooting pain around my lower tummy!  I shot to the toilet and as I sat a sudden rush blood everywhere!

It really looked as if someone had been attacked there. Dan rang my mum and she got there in less than a min (she lived a street over), straight in the car, no belongings nothing, and I was in hospital in 4 minutes. Thank goodness we lived behind the hospital!  Dan rang my dad to come over just in case he had to get to the hospital.  When I got there they hooked me up to a monitor; only the smaller twin had serious decels and they tried to examine me and it was too messy.

They decided section now, Danny had to be there in 7 minutes which he managed.  All that went through my head was he told me the chances were slim they'd both survive if either.  I remember having the spinal and he hit a nerve, which resulted me in kicking my midwife.  Apart from that I just remember bodies buzzing around and Dan coming in.  The next thing I remember was someone saying 11.51 .  I looked at Dan and he said twin one out (smaller).  Didn't see her,  just heard a door.  7minutes later I remember them saying twin 2 out and I saw her beautiful little cheeks and nose the rest of her was covered.  Ruby was  4lb 6oz and Megan was  4lb 11oz.

As I was being stitched my mum had followed my girls and had managed to get a message back to me to tell me the girls looked to be doing well. I was stitched back up and moved to recovery! Wow when everything started wearing off I felt sick and itchy it was the most weird thing in my life and the shivers. Wow not an experience I would ever want again!  I got wheeled along about 6hours after to see them but the warmth from the room hit me and I felt I was going pass out so they wheeled me back to recovery.  It was 14hours before I saw them.

I couldn't see Ruby (smaller twin), she was quite high up, but saw Megan and she looked amazing! I was shocked she looked so well as I was used to term babies!  The 1st week and 4days were quite eventful back and forth between rooms as Ruby needed more than Megs to begin with, only for Ruby to progress quicker Megan in the end.  At 2wks and 2days I finally had my babies together and feeding well and at 3wks 2days, a day I never thought would come, we brought our babies home!!!

Thursday, April 12, 2012

31 Ultrasounds Later...

    I have always loved babies, and so I was thrilled when, after 6 years together, my husband agreed we were ready to have one of our own!
    After a fairly uneventful pregnancy, and a fast but fantastic water birth, we were blessed with a beautiful boy – Hudson.  A delicious, fun-loving, bright, adventurous child - and thus a good advertisement to sell hubby on the idea of having more! I promptly started to hint that another child would complete our family.

   As we also had a 13 year old daughter from my previous relationship, a new baby would make 3, so it would be a bit of an adjustment…but we wanted Hudson to grow up with a sibling close to his age…and hopefully a daughter so Adam would have a son and daughter of his own.

    Not one to leave things to chance, I followed my cycle with a vengeance. I ate all the stuff to “make a girl”, we took all our zinc and folate and everything else that was recommended…..then New Years Eve…a few drinks and a fun night out and…Success! A positive test 8 days after ovulation! We could hardly believe it.

    I was soon tired and nauseous, but we were thrilled and excited. After a nasty bout of the flu at 10 weeks, I dropped in to see my Ob before my first scheduled appointment – just to check all was ok.
    “Let’s just listen to the heartbeat and check there is only one” he joked. I laughed absently.
   As I lay on the bed looking at the blob on the screen, I couldn’t understand why the Dr was giving me the peace sign with his fingers.
   “There’s 2.” he repeated.
    “What?” I was confused.
    “2 babies.”

    Well that moment changed our lives forever!
   10 week scan
      As I lay there gob-smacked and freaking out, the Dr went on to tell me that the babies were Monoamniotic/Monochorionic identical twins, due to the egg splitting 8-13 days after fertilization. So I had known I was pregnant before they even became twins! Splitting just one day later could have meant conjoined/siamese twins. He continued explaining they have no dividing membrane – they share the same amniotic fluid – and are given a 50-70% chance of surviving the cord entanglement they create by twisting and turning around one another. Only 1% of all identical twins are MoMo. As they grow, it gets more and more dangerous, as the larger the baby the less room there is, and thus they can actually compress each others cords and cut off the vital supply of blood and nutrients from the umbilical cord. They also have a much higher rate of defects and anomalies. Thus we would have all the risks of a normal twin pregnancy… and much much more.

     The Ob declared I should probably not tell anyone I was pregnant and wait for nature to take its course - a likely miscarriage. Needless to say I decided he was not the right Dr for me. 

    On shaky legs I left the clinic and phoned my husband – his first day at a new job. A memorable day for sure! We weren’t sure if we should rejoice or cry. We did a bit of both.

    We started seeing a maternal fetal specialist, with fortnightly ultrasounds. There were so many decisions to make - how much monitoring, when to deliver, when to start steroids for their lungs etc.. There is so little research on these twins - they are so rare, making studies hard to conduct. Through the one support group in the world (
www.monoamniotic.org) we learnt of the most successful treatment plan – and we fought for it every step of the way. Our new specialist agreed to allow us to be part of the decision-making process. She was wonderful, compassionate and positive; a pioneer in her field and world-renowned. In a tragic twist of events, she took her own life when I was 19 weeks pregnant. We were saddened and bewildered. 

    Assigned a new specialist, we fought all the battles again, and a plan was roughly laid out: weekly scans from 24 weeks, then by 28 weeks to be inpatient at the hospital to be monitored daily. Then if all went well we would deliver by c-section at 32 weeks (a vaginal delivery was out of the question due to the danger created by the cord entanglement, as well as the risk of cord prolapse). We were given the option of termination due to the stressful nature of the pregnancy, and the uncertain outcome and risks…but we had already fallen in love with our little blobs!

    When MoMo’s survive they are known to be the closest twins of all as they have been in physical contact since conception, they have been seen holding hands and sleeping forehead to forehead in the womb…. and then similarly once born. Some of the ultrasound pics are amazing. 2 little bodies wrapped around one another in a tight cuddle……2 faces looking eye to eye at one another…..we couldn’t wait to see our girls share this bond. Through our 31 ultrasounds we were indeed witness to much cuddling and spooning - and some kicking and poking! 

    The weeks slowly passes – my concerns allayed with frequent MFM appointments, and a home hand- held Doppler for reassurance.

    At 28 weeks I became a resident on the maternity wing. I cried for days – missing my children, my husband and my home. Frightened for my babies and daunted at what lay ahead. My poor husband had the task of running the household, cooking, cleaning, working full-time, taking kids to school and day care etc etc .…as well as making sure he visited me every day without fail! He was a true hero – my rock. My wonderful mother brought Hudson in twice a week to spend time with me, and my daughter Xani often came after school and sat on my bed and kept me company.

Hudson admires Mummy’s baby belly
    We were told not to set up a nursery as it would make it too hard if we lost one or both the twins, so I spent time pouring over catalogues wondering what if anything I might need. We discussed what car to buy to accommodate our large family…and we discussed whether we would get the same car if only one baby survived. We discussed whether we would want to try for another baby if they both died. We could hardly believe the things we were discussing…..

   I had CTG’s 3 times a day to check their heartbeats, an ultrasound every 2nd day to monitor the cord entanglement (which was evident from 12 weeks), and steroid injections weekly to prepare their tiny lungs for their early arrival. 

    Finally my 5 week stay in hospital was coming to an end - we had reached 32 weeks with few scares, only to be told the NICU was full and we would have to wait another day. After a sleepless night, we awoke to again be told all of Brisbane was full, and we would be flown elsewhere – to just await the announcement.

    As we ate breakfast suddenly midwives arrived with a gown and the news 2 beds were now free and we were to deliver our babies immediately.

    I was terrified, so the lack of time to ponder what was about to happen was probably just what I needed; as well as some expert hand-holding and brow-stroking from Adam. I had previously had 2 natural drug-free, full term births – so this preemie, high-risk c-section was daunting to say the least!

    In no time at all our 2 tiny girls were born within minutes of each other – the girls screamed as they entered the world, and continued to breathe on their own! Harper 1.9kg and Cleo 1.5kg – tiny but perfect. They got an 8 and a 9 on their apgar scores. They never needed oxygen, or any meds at all. They were even brought straight to us (after a quick once over) for a cuddle….I cried and cried as I never expected to see their little faces before they were covered in tubes, and put in humidicribs. I really had never let myself believe they would make it…. It was an incredible moment!
Cuddles a few minutes old – what an emotional moment!
    As the cords were examined a shocked silence fell over the room. The girls had survived horrific entanglement, with a true knot at one point. We delivered them just in time…..they were truly our miracle MoMo’s.

 The cords.....true knots at the top – twisted and tangled all the way – breathtaking..

    They were in NICU overnight, then much to everyone’s amazement moved straight to Special Care. They had gastro tubes for feeding…but breastfed from 33 weeks once a day…by 34 weeks it was twice a day…  I pumped hourly to increase my milk supply….day and night. Let-down was so hard to achieve without my babies…often I wondered if I had even had babies as I rarely held them, there was no nursery for them  and I hardly fed them. But we were lucky - we saw many other families facing much harder journeys in the nursery.  Still, the Special Care experience can hardly be described…it is an exhausting rollercoaster ride, of guilt and worry. But for us it was a strange relief to see them in the crib with their monitors and tubes! This to us was the best possible outcome of a treacherous pregnancy.

First twin kangaroo cuddle – lucky Daddy!      

    After only 30 days in hospital, Cleo and Harper came home and have never looked back.

    After 2 previous singleton, natural, yoga-filled, water-birthed pregnancies and babies, this fully monitored, medically overdosed, terrifyingly uncertain pregnancy with a caesarean and long term hospital stay, plus NICU and SCN for our premmie babies….sure was a test on our marriage, our strength , our positivity, our emotions, and our ability to look beyond and into the future.

We made it and will be forever grateful we were lucky enough to be blessed with our miracle twins.                                                     

 They even shared a pram as they were small enough to lie in it together...
    Today: our “Twirlies” as they are affectionately known, are now nearly 5. They are like chalk and cheese and yet they are alike in so many ways. They giggle and play all day long...and we struggle to get them to stop chattering in bed each night. The early years were so hard – with 3 under 3, and a teen as well, and all the feeding and sleepless nights exhausting! But now having 2 is even easier than one as they do everything together and are the best of friends!

   Growing up so fast.....

Wednesday, April 11, 2012

Miracles in the UK

There I lay with a 6 month beautiful bundle of joy and my husband said "I would like another" I smile and say, "in another 5 years", he looks back "I think I will be too old in 5 years. I want to see my children grow up. Look how close Riley and Tia are." (Grandchildren of a friend that are 15 months between each other) I look at him and say "yes, that would be lovely, they would be so close they would be like twins." (Famous last words)

Only the month after I take a pregnancy test which was positive, we were excited. 6 weeks into the pregnancy I started experiencing severe cramping, the doctors sent me for scan as they thought the pregnancy may be eptopic. We went into the scan and they were looking and my husband says "I bet its twins". I hit him and say "don't be so silly", the sonographer laughed and said "do twins run in your....oh!" Both me and my hubby looked scared at her "what's wrong?" we asked. She looks up, "I need a second opinion. I think I can see two fetal poles". "TWINS?!?!" I gasped and we were sent outside for 45 minutes. I remember thinking "I'm only 20, how am I going to cope with twins and a daughter under 2?"

45 minutes later we were called in and they said after looking over the pictures determined there were two fetal poles. My husband says "so we are having twins?" The sonographer looked back and said, "yes, Mr. Reynolds you are having twins. You need to come back in two weeks to be monitored". We agreed and left. Two weeks later in the same spot feeling just as nervous as before we were called in, they looked over and stopped. They told us there was a possibility that the twins were coinjoined and that I would have to come back in 2 weeks for a definite answer.

I left feeling numb I didn't know what quite to say or think. I dodged the subject with my husband till the next scan at 10 weeks. Again same position than before watching the clock tick over more anxious than either of the times before, again we were called in and at the end of the scan she said "Good news, they are definitely not conjoined but I want you to go for a scan in two weeks with a specialist as I can't seem to find a membrane". We sighed with relief but without realising what she had just said was bad.

I got home and curiosity got the better of me and I googled it, after reading all the horror stories. I sat there and cried. My husband sat beside me and asked what was wrong. I showed him and he said there may still be a membrane and not to worry. Having a daughter of 7 months gave me something else to concentrate on between being sick with morning sickness and feeling so tired of course. 12 weeks I sat in the same spot completely overwhelmed again she scanned them over and she looked at me again. "Urm, I'm going to clean you off and I think you should come and sit down." She cleaned my stomach, I rearranged my clothing and she looked at me and said, "I can confirm you are carrying Monochorionic Monoamniotic twins, they are extremly rare and in the UK have less than 50% survival rate. They are in the same amniotic sac and can easily tangle in each others cords which will result in fetal death, they can cut each others blood supply which will result in fetal death and also TTTS which can be handled but isn't 100% that it works. The negatives out weigh the positives and I suggest you get a termination."

On the way home we drove in silence as we parked outside our home in Broadfield, West Sussex (UK) my partner held my hand and said "I will support whatever decision you make." I sarcasticly smiled and got out the car. That night I tried to speak to a few close friends about it, neither knew what to say and told me to do what I thought was best. It was not much help at all. I then, I don't know why, searched in the tool bar MoMo twins and found the facebook group called MoMo Twins: Pregnancy, Birth and More. I spent 2 1/2 hours reading everybodies stories and it gave me a glimmer of hope. I turned to my husband and said, "Who am I to play God with two people's lives? I am not God and don't wish to be so. I am going to let nature take its course... If we come out with two, awesome, with one, so be it, and none, at least we would had tried. I can't give up on them." The next day I received my first consultants appointment at the local hospital where the consultant suggested that I go to 36 weeks and have them naturally and only have a section if there's trouble." I left feeling confused as she said the opposite of the specialist I saw, that night I lay in bed thinking about things. The next morning I decided to call East Surrey hospital (45 mins away) where I saw the specialist and asked for all my appointments there and with a more experienced specialist.

We continued our two weekly scans and all was going well until 18 weeks when I collapsed during a routine scan. I was rushed to accident and emergency and they did all sorts of tests and came back with that they thought was a blood clot on the lung. Over night they gave me blood thinning injections in hope it would flush the clot and the next day I was taken down to radiology where an Indian doctor sat me down and said, "You need to be aware that you are having radiology with gamma rays, we think your babies may have developed all its features BUT there's a chance they may have not and doing this may cause mutation." I asked, "what if I don't do this?'" He responded, "It's likely you won't be able to carry on with your pregnancy." I asked for a few minutes and thought of my options, I came to the conclusion that I would rather risk them being mutated than terminating them as I had I already felt them. I called back the Dr. and said "I will go ahead with procedure" I sat and hugged a huge machine while its took pictures of my lungs. I went back to the ward and anxiously waited the results. 5 hours later a Dr. came to me and said "they couldn't see any clot and they thought it may had flushed out."

Back home all was okay and carried on normally till 28 weeks. I was sat in my living room watching TV while my partner was in the bath  and I started to feel my stomach contracting; having a singleton before I knew what was happening. I left it a hour before I called down my hubby to take me to the hospital. We got there and they monitored me and said "if we can't stop this we need to organise an air ambulance to take you to St. Georges in London as we don't have the facilities here for two 28 week old fetuses". They gave me some medication which calmed them down and 2 hours later stopped. They told me not to go out by myself and do minimal walking and things around the house to avoid preterm labour. At the next consultants appointment she sent me for steroids straight away and said I needed a iron transfusion as my iron levels were dangerously low. The next Thursday I went in at 7am they started pumping the iron into me and at 8pm I was still there. A nurse came in and I asked "excuse me, do you know how much longer it will be as I've been 12 hours". She turned and sternly said "girls like you take up room in the delivery suite because you cannot be left in a chair. It will take as long as it takes". She walked out came back 10 minutes later, "so are you going to breast feed your twins?" I replied "I don't think its good idea to be up all night breastfeeding twins and be up early with a 14 month old."  She stared at me and said "Well, do you know you are going to kill those babies because formula will not digest in the system properly? I had a meeting with my team and we decided when and if you should have a section and we haven't agreed to it."  I looked at her and said "my consultant booked it months ago". I sat there holding back the tears and she then said "when that is finished I will take you to the NICU so you can see how they will be!".

Fifteen minutes later she left me at the door of the NICU and I went in and saw all these babies connected to machines and broke down and left the hospital and went home. The next day I called my consultant to say what had happened and she assured me the next day that the section had been confirmed and nothing to worry about. 1st of December came, delivery day, I was super excited when I looked out the window to see a blanket of snow outside.  We called a taxi who were hesitant to come and told us they would charge us double which my husband said "I don't care, we're having babies."

I got dressed in the gown, was sitting waiting patiently when I saw a smartly dressed man with a brief case who looked out of place on the ward. He was walking towards me he said "Miss Plant?" I looked at him vaguely "yes?!?". He said "I'm sorry to inform you we are unable to do your elective section today due to no space in the NICU at this current time." I got really upset I said "Do you not know how important this is? Do you not understand the consequences?" He looked down and replied, "I'm afraid I have done all I can." I asked "at least you will give me a scan right to monitor the blood flow?" He stated, "No, Miss Plant, we are unable to scan you today please make your way here tomorrow and we will try and fit you in". I went home rather angry but tried to sleep as much as I could.

The next morning I wake and look out the window and we had 2 feet of snow, we call the taxi who again is reluctant to come and said this time they would charge double and a half! Again we responded "We don't care, we are having babies." We drove to a family friend's to drop our daughter off as we went to turn around we were faced with a hill. The taxi did not want to go up but luckily there were 2 strong men trying to dig out their cars that James begged to help. We finally got up the hill with help from two local men and James when we get stuck again up a smaller hill, poor James had to push the taxi up by himself and faceplanted in the snow but like a good sport got back up without a word. It took us a hour and a half but we got to the hospital again. We got dressed for the section when I saw the smartly dressed man again. I looked at James and I said "I can't believe it, he better not be coming here." He stood at my bedside and I looked up, "Miss Plant, we are unable to do your section today due to lack of staff due to the snow. I have considered getting you to another hospital as we realise the importance but we cannot get any ambulances safely here. Please stay and we will see what we can do in the morning." James hugged me tight and said stay here and I will come back tomorrow. I was left 7 am till 7 pm with no monitoring, food or water, then the staff changed and a head midwife came and monitored me and gave me a sandwich and again before bed and showed me to a private room.

At 5am I woke to a knocking at the door and she said I've come to monitor you...I remember thinking all I want is to sleep. As she started to monitor she said "That's not good. Okay stay here I need to go get someone". 10 minutes later a group of people ran in with a scanning machine my little miracles heart rates were 200. They said "We need to get you up to delivery suite now, these babies are coming". I cried "please call my husband, I can't do this alone". They took me up to the delivery suite and the heart rates calmed down but the consultant said they need to come today. They were wheeling me out the room to theatre when James arrived as we went to exit the room I heard "there's not enough staff in the NICU". I shouted 'Noooooo!' And the anesthesiologist smiled and said don't worry "they will be here soon". After a hour I went down to theatre and Maddison Sophia was born at 10:30 on the 3rd of December, weighing 3.15lbs, and Mia Sienna 2 minutes later at 10:32 weighing exactly the same. Their cords were looped and tangled and the cord was wrapped round Mia's neck. Thankfully there was no deformities due to the gamma rays. After a 22 day stay in the NICU Maddison and Mia came home on Christmas day 2010 :)

Wednesday, April 4, 2012

My Momo Miracles

I had never thought I was going to be a mother.  I'd been diagnosed with polycystic kidney disease when I was twenty-one.  Due to the kidney disease I had high blood pressure, and I also have chronic migraines.  I had been told by every doctor for ten years that I should not have children.  Not that I couldn't have children but that I shouldn't have them.  I told myself that I didn't want children so as to not have to confront the idea of not being able to have them.  Then, about six months after getting married,  I found myself pregnant and everything changed.

After embracing the idea of being a mother, I was then devastated when I had a miscarriage at the beginning of my second trimester.  We tried again right away but were unsuccessful.  Due to my health issues (and the increased chance of multiples) we decided against fertility treatment and just left it up to Mother Nature.  After four years waiting, I finally found myself pregnant in September 2010.

While waiting for our first real ultrasound (around nine or ten weeks,) my husband and I were amused by the couple who come out into the waiting room very excited that they were having twins.  My husband jokingly said, "What if we are having twins?" Not amused, I said, "Don't even say that.  That is NOT going to happen."  

Ten minutes later I found myself lying on the table, stomach covered in ooze when the tech exclaimed, “Oh wow, its twins!”  Thinking (or hoping) she had made a mistake I asked if she somehow got the other lady’s ultrasound mixed up with mine!  But no, there was no mistake.  I was carrying twins.

The doctor could see right away that the separating membrane was missing and he referred us to the best--and, I think the only--perinatologist in the state.  My biggest fear was that the twins would be conjoined and I spent every minute of the next couple weeks worrying about it.

Upon meeting my perinatologist, I knew I liked him.  He had such a peaceful, quiet, reassuring way about him that I felt very comfortable.  He soon confirmed that the membrane was missing and diagnosed it as a momo pregnancy, NOT conjoined.  My relief was tempered when the doctor began explaining exactly what a momo pregnancy entailed.  Hearing that my babies only had a 50% of even being born, I had flashbacks to the pain of my miscarriage.  How could I go through that again?  The doctor explained that there were options but I had already decided that, no matter what, I wasn't giving up on the baby (now babies) that I had waited four years for.  Regardless of the odds stacked against us, I just felt that these babies were meant to be.

The first half of my pregnancy was miserable yet uneventful.  I literally spent most of my time trying to keep food down and being unsuccessful.  It was the middle of winter and my perinatologist was 100 miles away so I went into my high-risk ObGyn for check-ups, along with many long drives to see the specialist.  Each appointment, I had to hold my breath until I heard the two heart-beats and saw them on the monitor.  While I felt that the babies were doing well and would be fine if I just stayed positive, I had a difficult time bonding with the babies growing inside of me.  I needed to build a wall to protect myself in case things didn't work out.
At 22 weeks, my blood pressure spiked and I was hospitalized in an attempt to prevent pre-eclampsia.  We all knew that 22 weeks was far too early to deliver but it was a possibility.  After several days in the hospital and some serious manipulation of my blood pressure medication, we did get things under control.  I was discharged to home on modified bed rest until I was scheduled to go inpatient at twenty-eight weeks.  However, at my twenty-six week appointment with the specialist the blood flow in the cords looked dangerously constricted so I was quickly admitted and began my inpatient stay.  

The first few days in 'Mommy Jail' were stressful.  I was immediately given steroid injections to stimulate the babies' lung development.  The pressure in the cords was rather high, indicating  something (a knot) was restricting the blood flow.  At one point, Baby A dropped off the monitor and the doctor nearly delivered them at twenty-six weeks four days.  Fortunately, upon hearing that, the boys decided to settle down and from that point on, their numbers got better every day. 

 I was monitored for three one-hour blocks each day, which translated into lying flat on my back for the better part of every day and night as the nurses chased the babies around my stomach trying to get a good read.  I also had an ultra-sound every second day to monitor the blood flow in the cords.  My husband and I soon settled into a routine where he spent half the week with me in the hospital and half the week at home going to work.  Things were looking good until, around twenty-nine weeks, my blood pressure began to rise again.
After several days of trying to get my blood pressure under control, everyone could see it wasn't working.  I was officially 'pre-eclamptic', I had become swollen in places I didn't know could swell and had to spend nearly all my time in bed, lying on my left side.  The day I reached the thirty week mark, the doctor came in early and--to no one's surprise--said things were just getting too dangerous and it was time to deliver.  Within the hour, after a flurry of phone calls to family back home and a quick shower, I had an IV put in and was ready to be wheeled into the operating room.

At 12:14 p.m. February 27, 2010 Casey Li came into the world, weighing 2 lbs. 4 ozs with the umbilical cord wrapped around his neck twice.  At the same time Casey was brought out, Foster John's feet came out with his brother.  Seconds later, he too was welcomed into the world weighing 2 lbs 5 ozs.  The doctor had everyone in the room come look at the umbilical knot the boys had created, not quite believing the mess they had made of it.  Each baby had a four-member NICU team who, after letting me look at each baby for a second, quickly had them intubated and whisked them away to the NICU.  

 Umbilical cord knot

It was nearly 8:00 p.m. before I was able to crawl into a wheelchair to see my babies for the first time outside the two seconds I'd seen them in the OR.  Not even the drug-induced fog I was in could contain my joy and fear upon entering the NICU and seeing them for the first.  They were impossibly tiny, yet perfect in every way.  They were even breathing on their own with just room level oxygen!  

 Casey Li  4 days old.  First ‘kangaroo care’!!

I had always felt that my children were going to be fighters, but even I was surprised by how tough they turned out to be.  My doctor attributed it to being stressed in the womb, which forced them to develop quickly and be resilient.  After dropping to 1 lb 15 ozs, the boys soon began to gain weight steadily.  The only setback they suffered was, after about a week, both boys were desatting regularly so they were put on a nasal canulla for a couple weeks.  Other than that, they made great progress every day, while I used my NICU time to learn as much as I could from the best caregivers around--the NICU nurses.

  Foster John  10 days old

We were told to expect the boys to go home around their due date, which had been May 6th.  By the beginning of April, it was clear the boys wouldn't be in the NICU that long.  The doctors said they usually never discharged a baby weighing less than five pounds, but our boys were doing so well they didn't need to stay any longer.  As one doctor put it, "They are the valedictorians of the NICU." 
On April 15, 2010, after an eight week stay, our boys were finally discharged.  At the time, both boys were 3 lb 13 oz and were too small to fit into a car seat so we were one of the few people ever to use the special 'car beds' the NICU had.  The boys actually had to ride in those for more than a month before finally getting large enough for a regular infant car seat!!

The first few months at home with the boys were a bit of a roller coaster.  While we were lucky and the boys were exceptionally healthy for preemies, they were still preemies and still faced preemie problems.  We were under strict orders not to take the boys anywhere or allow many people in and out of our home for at least six months so I became rather stir-crazy.  Neither boy slept well, grunting and fussing even when they did sleep, and we struggled with terrifying spit-up/choking episodes for months.  Our days were filled with visits from the county nurse, many visits to the pediatrician, trips out-of-town to see specialists, visits from our Family Outreach counselor, and even physical therapy evaluations.  Still, somehow we managed to get through every day. 

My boys are now two and doing incredibly well.  We have graduated from the Family Outreach (Early Intervention) program and the boys are developing very well.  The only stumbling block we’ve had recently is with speech.  They are a bit behind in learning to speak English but have mastered their own language “Twinglish.”  We have started therapy and have been learning sing language, which is helping them communicate without getting frustrated.  They have now started making up their own sign language, which is a fun challenge to decipher. 

 I could not be prouder of my little men.  Every step of their journey to be with us was quite a challenge and they proved to be such fighters!  Their strength amazes me.  Late at night, I sneak into their room to watch them sleep and remember them as tiny 2 lb preemies who couldn’t even keep themselves warm and often find myself crying.  I am so very, very blessed.
 Foster John (left) & Casey Li (right) 2 years old!