Thursday, January 19, 2012

Why YES, twins DO run in our family!!!

April 2009
My son was 15 months old and we decided to start trying for another baby....well... I had my IUD removed in March because we were talking about getting pregnant again... I didn't realize that I would get pregnant so soon.  I found out I was pregnant in the middle of April.  My first appointment with my doctor was just a sit down appointment where she asked me questions about my medical history, etc.  During the appointment she asked about history of twins and I don't know if that is what got me thinking about twins or what, because my sisters are fraternal twins.  I kept thinking "I'm probably having twins" but then thought "that's stupid, you're not having twins" right after.  Well, at my next appointment, the doctor did an ultrasound.  I was only about 9 weeks pregnant, so she did the trans vaginal ultrasound.  The first thing she said was "Guess how many are in there..."  I couldn't believe that my suspicions were correct.  I thought, "no way, I AM having twins!"  Thinking they would be fraternal, like my sisters, b/c that is what runs in families....  The next thing the doctor said was that she didn't see a membrane so she would be sending me to an ultrasound technician to have a complete ultrasound done.  She said, "this may be a type of twin pregnancy called 'monoamniotic monochorionic' which is high risk."  I asked what that meant.  She said "we will cross that bridge IF we come to it.... don't go look it up on the Internet when you get home"  WHY DO THEY ALWAYS SAY THAT?!  OF COURSE I looked it up and thought for sure my babies were going to die they minute I saw 50% chance of survival....
May 2009
At my complete ultrasound, the ultrasound technician wouldn't give me details but he did say he saw two yolk sacs... but he also said he couldn't find a dividing membrane.  When I read more stuff on the Internet, I think on the monoamniotic.org site, it said something about if there are two yolk sacs, there will also be two amniotic sacs... so I felt relieved, I thought, for sure there must be a dividing membrane, they just aren't seeing it.  Well, no, the ultrasound tech was either wrong or it just didn't work out like that for us, because there was only one amniotic sac. The doctor told us that the ultrasound did not show a membrane and that they would need to be monitored closely and that I would go inpatient at 24-26 weeks to be monitored. 
June-September 2009
In the middle of all of this, my husband decided to go back to his old job.  That meant changing insurance companies.  I got back to my insurance through my work and had to change doctors.  I knew what doctor I wanted to go to, he was a perinatologist who was highly recommended.  Of course the people at his office didn't know what momo twins were b/c they are so rare.  I called to make an appointment and explained the situation to the office workers.  They said "twins, no big deal"  basically.  When I finally had my appointment with him, the nurse practitioner came in instead of the doctor.  She did my appointment and when I brought up the plan about going inpatient and weekly ultrasounds and everything, she looked like she had no idea what I was talking about.  She said "no, we don't need to do all that... it's just twins...."  I said "No, it is monoamniotic twins, they are in the same sac and they can get asphyxiated by their cords." She then decided to go ask the doctor, probably thinking I was some over worrying pregnant mom.  But when she came back, she must have realized that she didn't know everything.  She said "Oh, yes, I spoke with the doctor and you are right."  Finally, I met the doctor.  He was great, he had just delivered another set of monoamniotic twins a few months before (apparently they were not actually his patient, but he was on call when she delivered)  He actually knew what monoamniotic twins were and that they were very rare and needed monitoring and early delivery.  I went inpatient on September 19, 2009, thinking I would be inpatient for up to 6 weeks, not knowing I would deliver my babies in just 8 days. 
September 27, 2009
My mom and my sisters were taking my nieces and nephews to Disneyland to celebrate their birthdays (my mom's bday and nephew's bday)  The night before I thought "these twins are going to want to come tomorrow..." just b/c everyone was actually doing something and I wouldn't have visitors to the hospital that day.  And, of course, during my morning NST, baby A started to have decelerations.  She would recover but then her heart rate would go back down again.  My nurse said "your doctor just called... he said don't eat breakfast, he's going to come in..." I burst into tears, I knew it was time, and I knew it was still too early.  The girls were 28 weeks and 1 day gestation.  I called my mom and my husband.  They were planning on meeting my mom and sisters at Disneyland.  My sister-in-law had already left to take my son to Disneyland, so my husband was able to come to the hospital without him.  Everyone came to meet me at the hospital and that is when my doctor showed up too.  He had been watching my NST from his computer at home.  He saw the decelerations and called the nurse, that is how cool my doctor was!  So I was prepped for C-section and my babies were born at 12:00 noon (both of them had the same time on their birth certificates, they were seconds apart).  Their cords were knotted together twice and were wrapped around Baby A's neck twice.  Both of my daughters were intubated after birth b/c they were having apnea.  
NICU experience
28 weeks is a pretty good time, the chances of survival go up to about 80%.  I felt pretty helpless though, all I could do for my babies at this point was pump my milk!  Baby A was the one having decelerations.  On the first day, I was more worried about her.  Day 1 was the honeymoon phase...  On day 2, Baby B started to have problems.  She first developed a pneumothorax.  They had to put in a chest tube.  Then a few hours later, her other lung also developed a pneumothorax and she needed another chest tube.  Her oxygen saturations continued to drop and she needed to be put on the oscillator ventilator and nitric oxide.  She developed pulmonary hypertension and pulmonary interstitial emphysema.  The doctor said her lungs looked really bad for a two day old preemie.  After the nitric oxide was started, she did start to improve.  After a few days she was switched back to the conventional ventilator and then extubated to room air!  But then she had to have a PDA ligation because her kidney function was not good enough to give her indocin for her PDA (like her sister got).  (Even since then, there have been studies that Indocin and neoprofin for PDA closures are causing Necrotizing enterocolitis so that is not always the treatment of choice today).  Both of the girls were off and on Bubble CPAP for weeks.  Then it was just working on feeds.  There were a few scares that they weren't tolerating their feeds, they got worked up for sepsis a couple times.  The NICU experience is kind of a blur now....even though I am now a NICU nurse, I forget a lot of their experience until something similar happens in my job.  
December 2009
After 11 weeks in the NICU, my daughters came home about a week before their actual due date.  We were very lucky that there were no major issues (aside from Baby B's first few days of life)  Baby B has some lung issues and paralyzed left vocal cord from the PDA ligation.  She sounds raspy and can make a good "wookie" sound when she is whining.    They are crazy, wild 2 1/4 year olds now! 

Monday, January 16, 2012

Rosie and Gabriella's story

Feb 2009, I was feeling really sick, morning sickness, night sickness and really bad sinus colds, bad headaches. I was like, what is going on I cannot be pregnant. My best friend said...ahhhh...I think your pregnant. I was scared to think because I had a little baby at home. I was breastfeeding constantly. So I went to the doctor, took a test and my doctor said, congratulations!! I was happy but I had a 8 month at home. So I went to my first ultrasound by myself. The tech was taking a long time, I was getting worried he wasnt saying anything and it only showed one baby. So he goes..oh wait I think something is wrong with my machine, ok so waiting.....he goes let me check top view of the head and then he goes ahh so do you see what I see, I looked I see two heads side by side in the same position....I was like, hmmmm whats that, he goes you are having twins but I dont see a memebrane but didnt say anything else. I was sooo shocked I was speechless. I didnt know much about twins and how many different types their are. So I went to pick up my son, told my mother in law, starting bawling and shacking. I was so scared and happy. She couldnt believe it. Now I have to say before I did my ultrasound my husband goes to me,wouldnt be funny if we had twins. I said ya right. So when I called my husband, first he didnt believe me but he was so happy.

I had my first Ob appt she looks at the ultrasound and goes this not right this is rare for it not to have a membrane. You have to go do two more ultrasound to make sure at a highrisk clinic. So she goes if there is no membrane they are monoamniotic. She said very high risk and that was that. I was so scared I remembered what she said I cried and called my husband. I went home right away on computer, totally freaked out and cried again. I went to the second ultrasound, she told me they are girls and no membrane. They have to make sure three different times to give you that diagnoses. She said sometimes its very hard to see it. Went back to my Ob, she transfers me a high risk doctor, downtown Toronto. I was happy about its one of the best hospitals. 

I went to my first appt, did an ultrasound it took forever. This time I had my husband. Finished the ultrasound then waited for the doctor to come in to tell us. I will never never forget that day. She comes in, sits down and goes their is no membrane which means they are sharing the same sac and placenta, skin to skin contact. There is 50% chance that one or neither will survive. We both cried. The best scenario is be inpatient from 24 or when you choose to be and be monitored how much you like with ultrasounds and non-stress tests. She said go home and think about and we will see you in a couple of weeks for another ultrasound. I cried so much that day and I had to take care of another child at home. We decided to go in patient at 25 weeks, meanwhile went to my appointments. Went to my appointments everything was going well, but then they did see the cords entangled with one knot the blood flow was good. I went home. 

I had a distraction, I was planning my sons first birthday, it was June 6 2009.  I was happy I got to celebrate his birthday I was worried that I was going to miss it. I was packing my bags, buying books and pj and some other stuff. I remember that day, June 30, 2009. I took my bags, dropped off my son, very hard to do. My husband and I went to the appointment, they did another check, and noticed that on top of it all I had a short cervix and now it causes me to have preterm labour,great!  I was so scared and I cried again. So I was admitted I got a semi-private room...I cried and cried. My husband went to get dinner and the nurse gave me my first round of steroids for the babies lungs. I had a neighbour and she was having triplets and she was 34 weeks, the next day she delivered. I  moved to her spot which was better. I had the window with alot more room and never moved from that spot. I had different people come and go. The next day I got my second round of steroid.They asked me what how many checks I would like so after discussing it with my Doctor we came up with 4x daily heart rate checks with once a day nst tests with weekly ultrasounds and If I felt that something is not right to call asap or if I wanted another heartrate check I was to call. My first of many Doctor, and med students doing there rounds checking how things were going, they said we hope to see you here for a long time and uneventful. I said ME TOO!! I cried. I think I cried every single day. I also missed my son so much, it was very hard. I never left my son ever. I hated that I was missing the things he was doing. I had a great system for him and what we did everyday. My mother in law stayed two days with him and my mom two days and then my husband took every Friday off to care of him. 

They told me I could walk around, so I go to my first ultrasound in the hospital. She said everything looks good, she did an enternal check and she said you have a short cervix(which I already knew) you have to be on bed rest only to the washroom no walking around. Oh great. I was wheeled back to my room. I was wheeled everywhere. When my husband came to visit he would wheel me around the floor. When he brought my son that made my day.My husband brought me shopping bags of groceries, he would take my order, he would take my clothes and wash them and bring back the clean ones. The doctors and nurses would laugh to see how much food and snacks I had. I had it all over the window seal, in my nightstands. I had 4x daily heartrate checks. I was always nervous doing those, sometimes we couldn't find one heart rate, she (Rosie) was moving around like crazy. That made me scared all the time but the nurse would always reassure me that this would happen because they move around alot but then we found it and had a good check. I could of done it myself.  My friend gave me her laptop to go on the internet and watch movies, well I couldn't get on certain sites the hospital blocked them. I was bored at times because I couldn't get up and walk around. I had friends come to visit, my mom would come and she would bring my son as well.  All I did was eat, order food and eat hospital food. In the hospital if you stay longer than two weeks they give you a menu so you get to pick what you would like for the day and snacks as well.I had books that I read so fast and wordsearches. The best visit I had was cousins that I haven't seen in a long time who brought my grandmother who was visiting from Italy, who I haven't seen since I was 12, I was 27 at that time. What  a visit! I was bumed that I missed a few weddings, especially my brothers and I was supposed to be the matron of honour. That was a tough phone call. I was also suppose to be a bridemaid in one of my good friends wedding. So sad. But I was happy that she came and visited and showed me her pictures and honeymoon. Sometimes you have to miss important things but I was happy that I did the hospital stay. I learned alot and opened to a whole new world. I would have not done it any other way.

I had my weekly ultrasound, everything was good. My goal was a good size for the babies. I knew I could have a big baby size, my son was born 8.1lbs, so I was hoping for a good size.  I was happy and so were the doctors with the progress. I had the best nurses as well.  Mount Sinai Hospital in Toronto, Canada was awesome. It was August 10/09, my Ob walks in and was so happy to see me and  my progress and how well the girls were doing. She tells me ok its time, I booked the c-section for August 13 so don't eat the night before. I was happy this part is going to come to end and was going to meet our girls. August 13 comes, my Ob comes tells me you better eat I cant deliver you today, the  NICU is full. I can not let you wait long, I want to deliver you. She goes and tells me all the other hospitals the NICU were closed as well, we might have to transfer you to Buffalo, or Chicago. I said no way! I am not waiting any longer, I was getting really nervous my husband was so mad. My Ob pulled through, she called up her friend who knows about my situation and pulled strings the only thing was I had to discharge myself and get myself over to the hospital across from where I was. She said he will deliver you next day. My husband got a wheelchair and discharged me and took me over to the other hospital.  I get into my room, this time I was in a ward. Fine. So we meet with the Doctor we talk with him and we say what time tomorrow, he tells us I cant deliver you tomorrow I am booked with c-sections. Boy,let me tell you my husband was mad and so was I.  I was getting nervous each day that passed. He told the doctor this is the reason why we came here, my wife is worried and scared its not safe to wait! she needs to be delivered. Ok lets see what day I can do it. He comes back August 17 I will let you know what time.

August 17/09, I had fast all day, i was starving. I was told it was going to be in the afternoon, there was an emergency c-section that had to be done, I wasn't considered an emergency. They finally take me in,  this was the first time I was in a operating room, I was scared,cold and shaking didn't know what to expect. Got the spinal block, my husband came in and I was feeling sick but trying to relax. 730pm Rosie comes out then Gabriella. My husband tells me they look like me. When I knew they were out that felt awesome and relieved. My husband told me he would never forget the expression on my face when they were born. They had four Knots. Rosie weighing 3.16lbs and Gabriella 4.6lbs. I was happy with their weight. The nurse tells me they will be in here for a week and then transferred to a hospital near my house. I was happy to hear that. They had cpap and were intubated for a day, Rosie needed the lights, a little jaunduce but was fine after one session. Two or three days later(cant remember) I was discharged. I was happy that I get to leave the hospital after all that but soo sad leaving them there, very hard. I went everyday and pumped every three hours, taking care of my 14 month old son as well. If I wasn't there I called to check on them. Then we get the call they will be transferred to the hospital near your home for feed and grow they will be there at night. We were so happy to go and see them. They had there own little room and I gave them breast milk everytime I would go. The whole time they were in there, they had breastmilk. I tried to breastfeed but they didn't get the latch part, but as long as they took the bottle for a whole day and pass the car seat test they would come home but after I stay there for a night and take care of them and if I needed help I had the nurses there. Everything went well and we took them home after 7 weeks total in the hospital. They both came home together which I liked. They came home two weeks before their actual due date.
 
 

Now they are happy and healthly little girls, were a little behind but caught up and are typical 2 1/2 year olds, talking away making us laugh everyday with what they do. Now I must say a year and half ago Gabriella was diagnosed with Cerebral Palsy in her legs, she crawls, and gets around. She does walk with assistance but she is always smiling and being silly she is one happy little girl.This is not who is she, it will not define her. I love my kids and looking forward watching them grow. Everything happens for a reason. I look at them and see where they are now and what we went through to get here, amazes  me every single day.
 
 
 

Our long journey to meeting Janie & Sophie




At 3 weeks and 2 days I knew I was pregnant. I took a test and quickly popped up a positive. I called my doctor as 5 months before I had had a miscarriage. I went in and had the pregnancy confirmed.
 
I had my 1st drs appt on March 30th, I was 7 wks and 6 days.
I swear I am already showing at this point. First we do the Ultrasound and the technician wants to try to do one on my belly at first. She starts it up and gets it all going, looks around for a couple of minutes and says that things are still a little small. So she sends me to the bathroom & tells me to take off my clothes. She leaves. I come back to the room and get on the chair/bed thing. and we wait for about 5 or 10 minutes. I am convinced at this point that I have had another miscarriage, though I do not mention it to my husband. She comes back and she asks if this is our last or if we are gonna try to round it off? (While she is getting everything ready to do a vaginal ultrasound) I say we are definately done, no more for me. And she says, I ask because I see 2 of them in here.. We are slightly shocked.. But very happy. I had an inckling that I might have twins & Stephen had apparently joked at work that my pregnancy test was positive so quickly & early it must be twins.. She did say that they would be identical, they were in the same sac, sharing everything. We would either have 2 girls or 2 boys. We are only the 2nd case of this particular twin to come into the office, it is very rare. There are many different types of twins our particular case is Monochoriotic Monoamniotic Twins. I ask for her to write down the whole name. She did, but asked me if I was the type to go home & google?? And yes, I am, lol. So she asked that I not go on there and read all the bad stuff, that isn't totally correct alot of the times… Well, I headed straight home, did all kinds of googling and eventually found my saving grace:
www.monoamniotic.org

At my next appt on April 29th, my dr was out on maternity leave, so I saw another dr in the practice. The dr was not able to tell me anything that I didn't already know. Said to lay out a plan is a good idea.If the babies were born early & Sparks couldn't handle their care they would be going to Children's Hospital in Little Rock. Depending on the situation, I could give birth there as well. Just depends how it all goes.. I honestly left that appt feeling like I knew less, then before I went in there. At this point I knew I only had God to rely on and I held onto that as tightly as I could!!

 
At the next couple of appts, basically the dr is promising me whatever I want. She had no expectations of the babies surviving, as the other case that came thru this office hadn’t survived. I was so very tired. And I was so nauseated, all the time. I had the worst smell adversions, I could hardly cook anything… My mom and dad hired a babysitter to come in and care for my 2 older children. 

 
17 week & 6 day appt - June 9th
I had been having feeling at night of needing to go pee, very very badly, but when I would go I would push like I was having a bm to go pee & I would barely get any out. (I am getting up 2 - 3 other times a night to go potty with no difficulty) The dr said I was having contractions. And for me to be ready at any time for her to tell me to stop doing stuff, because at one of my appt she will tell me that. I see a perinatologist at my appt on the 15th, I am to call her after that appt to tell her how it went. I start going to see them every other week from here on out. I asked her when we would start the fetal monitoring & she said around the 24th week or so, I will probaby go in every day in the week.
#7 We talked about the hopitalization again, I told her how open I was too that - whatever I have to do I will do with NO hesitation. She said she was glad to know how serious I was and she now knows I understand how serious this pregnancy is. That was a relief to her & she won't hesitate at all when telling me what's best for me to do. We found out we are having girls!!

June 23rd, 20 weeks we were told to stop having relations.
At the next few appts the dr is wishy washy. She isn’t wanting to do what we had agreed on. She is trying to treat it as a regular twin pregnancy and I am pushing for more. She’s even telling me we will try for a natural birth. She is supposed to contact the local children’s hospital and get their recommendations. Took a good month for her to finally do that. At this point, I read another blog, written my momo parents and lived by this quote until the end of the pregnancy! "I have NOTHING to complain about. I HAVE TWINS! I've always wanted twins. God is growing me up. God is strengthening our marriage. This is an adventure. Complaints would just be a waste of time. Worry would just be an insult to God. I am living life in the here and now, and excited about where God is taking me."
July 24th, 24 weeks we find out I am being transferred to the children’s hospital, that is 3 hours from home.
At 25 weeks and 3 days I have a level 2 ultrasound. They estimate the babies are 2 lbs a piece and rave about how the girls are beating expectations. They said this was the best momo pregnancy they had ever seen. Man, I was feeling good that day J
August 4th - 26 weeks we have the 1st appt @ the children’s hospital. This was the best appt I had had up to this point. Because these drs had looked over my charts, did their research and knew what they were talking about!! I saw the head specialist and a plan was laid out. I was to go home this week, come back week 27 they’d check us out- send me home and then week 28 they'll put me in the hospital. I'll stay in the hospital for a whole week, with monitoring to figure out the girls schedules & such. Then the hospital has a plan in place with a hotel down the road, they call it Camp. So they shuttle you between a hotel and the hospital, they’re about 5 min apart. They give you food vouchers to eat with. I am ecstatic as this is close enough to the plan I was wanting. We leave happy.

I went to Little Rock for my week 27 appt, I had some contractions, they check me & I am dialated to 1. They monitor the girls, things seemed fine (once they found them) They decide to keep me in Little Rock that week, August 12th. I had a small bag, just in case, but I hadn't thought to take my phone charger or much else, other than a change of clothes & tooth brush. I spent about a week in the hospital. 2 days into the hospital stay, my dad passes away, I get to go home for the weekend and I come back on Monday. I stay a few more days in the hospital. They monitor me & the girls every 3 hours. There were times that the girls were extremely hard to find, it would take forever for the nurses to find the 2 girls' heartbeats. There were times that a nurse would give in & hold the "monitor" in place. In these instances, most of the time, I had to be monitored between 30 min to an hour, there were times I was even monitored for 2 hours
At 28 weeks they sent me to "camp" . I would eat breakfast at the hotel, lunch & dinner would be sent from a deli nearby. The hotel shuttle would take me to my appt every other day. (Monday, Wednesday & Friday) I monitored myself at the hotel, every 3 hours & once a day I had a nurse call me & check in, answer questions, take notes, ect. There were times I couldn't find their heartbeats & I would have the shuttle take me to labor & delivery (happened mostly around midnight for some reason) and I would be monitored for about 3 hours. These monitorings were the worst. At that time of night the nurses weren't the best, they couldn't find the 2 heartbeats, couldn't keep them on the machine, we would end up doing ultrasounds just about every time I went. And I was just exhausted & mostly I could monitor better than the nurses, so it was hard for me to sit back & let them do their job, lol. It didn’t help at this point that I was only getting to see my family on the weekends, such trying times. At each of these appts there was a certain dr that I always ended up seeing. He felt the need to constantly remind me that they girls could pass away at any moment. Just because we were doing all these monitoring did not mean that the next time I came in they would be alive.. What a great way to end each drs appt.

At 31 weeks and 2 days, they think they see a knot, a loose knot, but a knot just the same. They monitor, the heartbeats are slightly irregular, it is decided to try to make it to 32 weeks, if we do, then we’ll be having a c-section the following Monday. We make it to week 32. I made a few midnight labor & delivery visits, but nothing major. 1 month after my dad passed away the girls were born. There were at least 25 people with us in the delivery room. Not many momo’s had made it to the point we had, here. So we were a big deal and they had quite a few student drs in the room with us. They were born with NO knots in their cords!! 


 
Janie Antoinette was born @ 12:43 - 4 lbs 4 ozs 16 1/8 inches long
She was born with club foot. She was breach with her legs crossed, explaining why she had club foot, it wasn't hereditary. Also explaining why I didn't feel her move much.
No other health issues, she was the healthier of the two. She had a feeding tube for a little while, She was on oxygen for 2 days. Janie had a lot of issue’s with juandice, we did the billy light on & off for all 3 weeks for hospitalization.


 
Sophie Rose was born @ 12:44 - 4 lbs 13 ozs 17 inches long
She was born with 2 heart murmers. 1 was one that should grow up on it's own and the other 1 she'll have her whole life, but a large part of the population has and never knows it. It is no big deal. She as well was on a feeding tube for a little while. She was on oxygen as soon as she was born, as she sucked in some amniotic fluid during the csection. She did that for about 1 week.






They took turns having ups and downs. They were in the hospital in Little Rock for 2 weeks and they transfered her to a hospital in the town we live in, she was there for 1 week. So October 10th was their 1st night @ home. :) 5 weeks before their official due date. 


Friday, January 13, 2012

Nothing Lasts Forever


My dreams came true. In June of 2010, my husband and I found out we were pregnant! Due to my rapidly growing waistline, we went in for a 9 week ultrasound and discovered two beating hearts! We were having TWINS and they looked great on the ultrasound. People always asked if we were scared, but we were beyond thrilled. Immediately we began buying things in two’s and white, always wondering what we were having, two boys, two girls, one of each? Just thinking back on the excitement brings tears to my eyes and starts the fluttering in my stomach all over again. There I was, 25, married to the man of my dreams, living in the house I’d always dreamt of, with a golden retriever rolling in the grass, and pregnant with TWINS! Life couldn’t be better. They say “nothing lasts forever”.

When you have a multiple pregnancy, you receive more frequent ultrasounds, so at 12 weeks I returned for an ultrasound where they told me once again that everything looked fine. As I met with my OB two days later, she casually told me that she believed we were having mono-mono twins. As I understood her, they would be identical and that was all. She informed me that at 20 weeks I would begin seeing a specialist at a different hospital because the hospital she was associated with didn’t have great capabilities for pre-term babies. She told me to plan for a 36-38 week delivery. On the drive home from the appointment I called all of my friends and family to announce that we’d be having identical twins! I was high off of pure joy and love for my babies. Later that day, I hopped online to discover all there was to know about my twins. What I didn’t anticipate was discovering that my twins had a 50/50 shot of surviving.

As I clicked on the first sight that came up when I typed in mono-mono twins, my eyes quivered at the words EXTREMELY HIGH RISK OF FETAL MORTALITY. All I could think was this cannot be happening to me! This is my first pregnancy, how can I have a complicated one? I’m going to lose my babies. I continued reading with tears streaming down my cheeks and my mind racing as I read 50/50 CHANCE OF SURVIVAL. My heart was thumping so loud that I could hear it and feel it in my ears. My hands were shaking. Perhaps, I thought, I’ll check another website. As I read through one after the other after the other, reality hit me like a ton of bricks. Fear and anger pumped through my veins. Why hadn’t my OB told me this? There I sat, alone, on my bed bawling. I called my husband hysterically and explained to him what I had just read.  He pleaded with me to stay off the internet and call my OB. My dreams and hopes for our little babies were shattering as I sat there crying, staring at the computer screen. They say “nothing lasts forever”.

There I was, at my lowest low, or so I thought, wondering what’s next. That night, I called my sister and told her what I found. Like the amazing sister she is, she found a study done on mono-mono pregnancies and told me to look it up. As I typed in “Heyborne Study” a site came up called MONOAMNIOTIC.ORG. I began reading story after story about successful “momo” births and the aggressive medical care that was needed. Sadly, along with those stories were devastating ones from mothers who had lost one or both of their babies. I soon realized I had to be proactive. I called my OB and demanded to see a perinatologist, a specialist in maternal fetal medicine. As if the fear and stress wasn’t enough, I had an emergency trip to the ER later that night due to abdominal cramping. All was fine regarding the cramping, but there we learned, at twelve and a half weeks along, we had two little boys growing inside. I think that was the point I really fell apart. The thought of losing my two little boys was more than anyone should ever have to handle.

As the sonographer moved her magic wand over my gelled up belly, I stared at the screen and saw my baby boys hearts beating away. Excitement was overshadowed by fear. At thirteen weeks along, my husband and I sat in a small, plain meeting room, waiting for my new doctor to come in with the results of my ultrasound. I don’t know if it was my sweaty palms or fear, but that room was absolutely freezing. I remember my legs and hands trembling as the doctor entered. He first asked me what I knew about mono-mono twins. My voice was so fearful as I told him what I had read about a 50/50 chance for survival. His explanation and plan gave me something to grab hold of and never let go:

Mono-mono twins share an amniotic sac, which allows for the two umbilical cords to become entangled and compressed, thus, cutting off the blood flow to one or both of the twins. These twins are very rare and 1% of twin pregnancies. In “normal” identical twins the egg splits between days 4 and 8 and then the amniotic sac forms around each blastocyst. In mono-mono twins, the egg splits between day 8 and 13, and the amniotic sac has already formed around the blastocyst prior to splitting. Any split after day 13 results in conjoined twins. 

He continued to map out a very clear medical care plan for me and my babies:

Begin inpatient care at the hospital at 24 weeks (the magic week for viability for fetuses)
Be monitored 3 times a day for 20 minutes to look for decelerations in the babies heart rates, which could mean a compressed cord and emergency delivery
Get weekly ultrasounds up to and after inpatient care begins to monitor cord doppler (blood flow through the cords)
Deliver babies via c-section between 32 and 34 weeks

He explained that they had had good outcomes in the past when sticking to this care plan. I felt a semi-renewed sense of optimism after our meeting. But I remained absolutely terrified. I don’t know how I did it, but I made it through the meeting without crying. After reaching the car, the makeshift dam at the back of my eyes broke and tears flooded my face.  

Getting through the next few weeks before going inpatient was so difficult. I couldn’t feel the babies move until 20 weeks, so for 7 weeks, I had to just trust and pray that they were alright in there. At my 14 week ultrasound, their cords were entangled. The waterworks began and never really stopped. The only thing that really kept me going was my husband, family, those two beautiful babies, and God. I never knew how much I truly needed them until this. Everyone said, God won’t give you more than you can handle. I always wondered, and still do, why He trusts me to handle so much. 

During those weeks, I found myself visiting monoamniotic.org daily, sometimes even hourly. I met other women on there who were in my same boat and were experiencing the same emotions that I was. I met other moms who had two healthy babies and had so many encouraging words to share. A few of us soon branched off onto other networking sites and some amazing bonds began to form. I can’t explain what it felt like to have someone else know exactly what I was going through. These were women whom I had never met, yet I was comfortable enough to spill my feelings to. These moms became closer to me than some of my friends. It’s strange that all I was doing was looking for answers to get my boys here safe and I found so much more. I found true friendships. I found a renewed strength. I found encouraging words. I found hope.

As I prepared myself physically and mentally for an 8-10 week stay in the hospital, I became aware of so many emotions. On one hand, I was excited to go inpatient because it meant I was in good care and that much further in my pregnancy if something bad were to happen. On the other hand, I was terrified to leave my home and not be with my husband very much for 8-10 weeks. I had two baby showers prior to going inpatient. It was so hard to really celebrate and let my guard down. Everything had looked great with the babies cords, but I knew, as doctors warned me, that could change in an instant. I tried to be positive and burry my fears, but they were always in the front of my mind. Most soon-to-be-parents have a joyous time preparing the nursery and “nesting”. My experience was bittersweet. I was so scared that we would prepare our home and more importantly our lives for two little boys that may never come home. I spent countless hours crying in their nursery as I prayed for a miracle. 

At last, the day arrived to go inpatient. I cried most of the day prior to going in. I tried to stay positive as I checked in and got the first glimpse of my new four walls for the next two months. It was boring, but it was blue! At least it complimented my mood. The first day was a whirlwind. I saw a million different people and got a million different pokes. I felt confident after my first monitoring session. Hearing the boys heartbeats was wonderful. I soon found out that monitoring two babies who were only 24 weeks, would be tough, very tough. What was supposed to be a 20min session of recording their heart rates soon turned into an hour and sometimes longer. The little buggers were quit the movers, not to mention they had a lot of extra fluid to swim around in. As the nurses tried to assure me that movement was good, I knew that movement would also cause more cord entanglement. I always tried to be upbeat in front of them, but it was hard. The night time sessions always seemed to be the worse. For some reason we always had to get a bedside ultrasound to locate the boys. Waiting for that ultrasound to come was so difficult. Most nights, after my nurses left, I’d sit in the dark and just cry. I’d talk to my boys and tell them how much I loved them and how much I needed them. I told God too. 

Most days were uneventful in the hospital. It was pretty boring. I tried to start a journal of my days, but honestly I didn’t want to remember all the thoughts going through my head. I just wanted time to flash forward and to have my boys safe and sound. I didn’t want anyone to visit besides my family. I didn’t want to get sick and I didn’t want to put on a “happy” face. I talked to my momo moms the most as we tried to get through it together. My nurses became my new friends, as we spent countless hours chasing around the boys with the monitors. I had been inpatient for five weeks while three other momo moms delivered three sets of healthy twins at 32-34 weeks. This gave me so much hope and so much jealousy. The docs and I had decided on a 32 week delivery and we were counting down the days. On December 15, the day I hit 29 weeks, baby A, Austin, had a deceleration in his heart rate. He recovered from it and didn’t do it again, but to be safe, I did continuous monitoring on the labor and delivery floor for 12 hours through the night. Other than getting absolutely no sleep, all checked out and I returned to my home away from home in the morning. After that, I was at the end of my rope. I knew I needed to be in the hospital, but for lack of a better word, it sucked. I was angry. I was sad. I was scared. I felt like the days were getting longer and longer and I still had 3 weeks to go. They say “nothing lasts forever”.

On December 19, my nurse was late for my morning monitoring. It was Sunday, so my husband was there. We always went down to the cafeteria to get coffee and cookies, so I was super annoyed that my nurse hadn’t been in yet. I remember walking around my room telling Erik how annoyed and how ready I was to get out of there. I had showered and was hungry, but otherwise feeling great. My resident doc had seen me earlier and teased me about how much chocolate milk I was drinking. Finally, around 8:45, my nurse decided to hook me up to the monitors. We found baby A right away, but we couldn’t find baby B’s heartbeat. This had happened numerous times before and the nurses would try for about 30min before ordering an ultrasound. For reasons unknown to me, my nurse tried for about 5min and during that time baby A’s rate dipped into the 50’s. We thought, perhaps the machine was picking up my rate and that the baby had just moved. She grabbed my resident doc to do a bedside ultrasound. At this point I was a bit nervous, but it had happened so many times before that I was sure both boys were fine. By this late in the game, I had seen enough ultrasounds of the babies hearts to perform them myself. When we found baby b’s heart, it was beating away like crazy. It was when she moved to baby A that my heart stopped. I saw no movement. My doc was silent. I grabbed for Erik’s hand. A million thoughts raced through my brain. The scariest one was the thought that I had lost one of my babies. I didn’t even try to hold back the tears. They came and there was no stopping them. I remember saying, “Meredith, his heart isn’t beating is it?” She looked at me and said, “Very slowly. I’m getting Dr. Zuidema.” 

Within seconds, my room filled with nurses who unlocked my bed and squeezed me through the door as they shoved me into the emergency elevator. They were literally running down the halls. As soon as I reached a different room, it filled with more doctors and nurses. Dr. Zuidema did a quick ultrasound on me and looked at me. The words that came out of her mouth will be burned into my memory for eternity. “We’re having babies today”. 

I was paralyzed with fear. 

I was too scared to cry and my husband wasn’t in the OR with me yet. I reached out for a nurse. My mouth was so dry I could barely speak. Somehow I managed to tell her how terrified I was and I asked her to hold my hand. I actually thought I was losing my babies. 

As I began to go numb, I could feel the tugging of them cutting me open. My husband stepped over blood as he walked to me. A doctor yelled out, “Here’s baby A. He has hair. Does he have a name?” I remember saying, “Austin...if he’s the smaller one.” As I looked to my left I saw his tiny, hairy head. At that moment everything went numb. I couldn’t breathe. I couldn’t speak. I couldn’t motion my arms to let someone know that something was wrong. I could hear everything around me. I heard the doctor say, “Here’s baby B.” I then heard my husband tell the anesthesiologist that something was wrong. I recall thinking I was going to suffocate because I could not take a breath. I remember thinking that Erik would be a good daddy if he had to raise them on his own. I was literally biting my tongue as a breathing tube was shoved down my throat. Luckily, I didn’t feel the pain. I later found out that my spinal went up too high and basically paralyzed my lungs temporarily. 

The next memory I have was waking up in the recovery room. As I opened my eyes, Erik said, “You’re a mommy, look at your wrist.” As I lifted my right arm I saw two bracelets reading “baby A 9:33a” and “baby B 9:34a”.

Call it joy, call it pure insanity, but I began hugging every nurse who checked on me and telling them how much I loved them. When my resident doctor showed me their cords I realized how close we were to a nightmares coming true. The boys cords were tied in a true knot and then twisted together. Dylan had it wrapped around his neck twice.

We had made it. God had answered our prayers. After six weeks of inpatient care, we delivered our mono-mono twins at 29 weeks and 4days (that’s 10.5 weeks premature). Austin weighed 2lbs 8oz and Dylan weighed 2lb 14oz. They were the tiniest little miracles I’d ever laid eyes on. 

I was wrong when I’d thought my six weeks of inpatient care was the hardest part. Having our babies in the NICU was excruciating. Hours turned into days, days turned into weeks, weeks turned into months. Just as the nurses who took care of me became my friends, so did the nurses who looked after our boys. It was the wildest rollercoaster I’d ever ridden. So many highs and so many lows, then finally things leveled out. As we inched closer and closer to their original due date, the waiting got harder. It seemed like the boys would start preschool in there. But, as they say “nothing lasts forever”.

After 61 days in the NICU, Dylan came home. Four days later, Austin joined him.

I can never thank the nurses enough who took care of me and my boys. I can never thank the doctors who acted so fast and within 15 minutes delivered my boys when they were in trouble. I will never know why my nurse that morning was late, but I thank God she was and that she caught the problem before it turned fatal. The thought that had she been on time and the cords weren’t compressed, I wouldn’t have been monitored for another 6 hours, sends chills down my spine. I can only thank God for placing all of the cards in order and for giving me my two, precious, miracle baby boys.

To all expecting MOMO moms: You can do it and you will be strong. It’s alright to cry and we are here for you. Put all of your faith in God and His plan.

Ashley Prins
Proud mommy to my 29 weekers, Dylan and Austin