Thursday

Monoamniotic factoids

*Monoamniotic twins are always identical
*Monoamniotic twins are the result of a late splitting egg; one that split around 8-12 days after fertilization
*Monoamniotic twins only occur in 1% of twins
*Monoamniotic twins share a placenta and amniotic sac which means they have skin to skin contact
*Monoamniotic twins are considered extremely high risk because of the risk of cord compression leading to fetal death as a result of umbilical cord entanglement
*Monoamniotic twins are always delivered by C-Section
*Monoamniotic twins are usually delivered between 32-34 weeks gestation because the risks of staying in utero are greater than the risks associated with a premature birth
*75% of monoamniotic twins are girls
*inpatient monitoring at viability yeilds the greatest success rates

Jacob and John

My monoamniotic adventure began when I was 17 weeks pregnant. I went to see a perinatalogist to make sure that my baby (I had an ultrasound at 9 weeks that showed ONE baby with a healthy heartbeat) had a normal umbilical cord since my previous baby had a 2 vessel cord. I was very excited to find out if we were having a boy or a girl. Right when the tech put the wand on my stomach I looked at the screen and saw what I thought was a deformed baby. The head and the stomach didn’t seem to be connected. The technician looked at the chart, back and the screen, at me and my husband and said, “I thought you were here about a 2 vessel cord”. I said, “We are”, and she said, it doesn’t say anything here about twins. So, that’s why the head and stomach weren’t connected….it was two heads! My husband and I were elated. It was shocking news, but exciting. I started crying. The perinatalogist came in and starting doing the scan, but after a while said she was concerned because she couldn’t find a dividing membrane. I knew that that meant the babies must be identical, but I had no idea what this truely meant. She said the babies looked great, and to walk around and get them moving so she could take another look to try to find a membrane. I walked around and went back in, very upset at this point because she said the babies only had a 50% chance of survival, that it was a high risk pregnancy, and if something happened between now and viability, there was nothing we could do. When she looked again, I saw the sweetest thing. My baby boys were holding hands. I knew then that we were not going to find a membrane. It was a very bittersweet moment. She looked at the cords and they didn’t appear entangled. We made an appt for a month later, and at that appointment a different perinatalogist looked for a membrane for a long time, couldn’t find one, and then looked closely at the cords. She pronounced them severely intertwined. At this point, 21 weeks, we knew we needed to decide what type of treatment plan we wanted to implement, and when we would start. Outpatient (5 times week NST) or inpatient monitoring (24/7), viability at 24 or 26 weeks. We met with a neonatalogist and decided that I would enter the hospital at 24 weeks. In the end, I just didn’t think I could live with myself if I didn’t do everything I could for these babies and something happened to them. So, at 24 weeks, I entered the hospital, and cried for 24 hours straight. Leaving my husband and 3 small children was the hardest thing I had ever done. My treatment plan consisted of 24/7 monitoring. I was allowed bathroom privileges and a 15 minute shower each day. If the strips were good, I could also have a 15 minute walk. My OB stopped in on rounds everyday. She followed the perinatalogists orders. At 25 ½ weeks we had a big scare. I went for a walk with my kids and husband, and when I returned, Baby B’s heart rate was in the 80’s and 90’s. They thought they were picking up my pulse, but it turned out they weren’t. They brought in the triage nurse who looked at the baby’s heart on ultrasound and she very matter of factly said, “The babies heart rate is very slow….look, it’s almost stopping”. It was terrible. So, we spent the next 10 minutes prepping me for an emergency C-Section and stimulating the baby so that he would move in hopes that his heart rate would return to normal. I will never forget hearing the nurse tell my husband over the phone that the neonatal unit had been alerted and that my OB and peri were ready to deliver if he didn’t recover. I remember praying and praying, “Please don’t let my babies be born this early”. Baby B did recover, and although he tended to keep us on our feet the whole hospital stay, he behaved enough that I was able to go to my scheduled date at 33 weeks 3 days. I was given one round of steroids at 24 weeks, and I had ultrasounds with the perinatalogists every 2 weeks while I was in the hospital. I was so scared about the C-Section and how my boys would do. Ultrasound had shown that Baby B had stopped growing appropriately in the last 2 weeks, so I was very worried about how he would do. The boys were born on a Wednesday, and that Monday they had said that if the C-Section was not scheduled, they would have taken them anyway because it looked like they weren’t growing well anymore. Jacob was born first and weighed 4lbs. 5 oz. John weighed in at 4lbs. 4oz. The doctor said there were 8 knots in the cords and additionally, John had the cord around his neck twice. She said she had to do quite a bit of untangling to get them out. Jacob started of on CPAP but had to be ventilated for a day and a half, but John stayed on room air. John was supposed to go home after 15 days, but I think he didn’t want his brother to be left behind, so he would get lazy and not nipple all his feedings. The boys came home together after 19 days and have just thrived. They are our little miracles, and we wouldn’t change anything if we could.



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Wednesday

Sydney and Hailey

September 24th 2004 we brought our precious babies home from the NICU to join our family for real! After months of agony and worry we finally felt relief!
Here is where my journey began...

At my first OB appointment at 8 weeks during a routine ultrasound my OB discovered twins. I was in shock. He mentioned in passing he did not see a membrane and when I inquired if this was cause for concern he tried to ease my mind telling it was but he had never had it happen to a patient ever in his practice. Those odds should have eased my fears but somehow they did not. I went home and read about MOMO twins and stayed up all night with worry. I called my OB is desperation the next day and was given no relief and no assurance. Weeks and days dragged till I could get another check. At 12 weeks I was full of worry they would not even see two babies alive. After confirming they were still there they still could not find a membrane and he mentioned he could not rule out conjoined twins. My ob still told me it was too early to tell anything definitive and I again waited for more days and weeks of agony. Not yet even knowing if my babies were conjoined! At my 17 week scan the ultrasound tech confirmed to me she did not think there was a membrane at all but that she knew they were not conjoined. She was a bit shocked I had not seen a peri and called from her cell phone to get me in to friend the next day. I was so relieved since my OB seemed to be putting me off all the time, like I was worrying over nothing.

At my Peri appointment the nurses seemed confident that they would find the membrane (it was so rare). The world fell from under us when they all confirmed what I felt I already knew, the girls were MOMO. My doctor was full of compassion but his diagnosis was grim and I was horrified. I thought I was prepared for this, hearing the cords were already very tangled, that the babies could be born as early as 25 weeks, that we would we be lucky to get them here at all was truly unbearable!

After consulting this monoamniotic.org I was able to gain some strength and knowledge and with that and my faith in God I could make it each day. I was monitored outpatient once a day from week 24-32 with the understanding I would go inpatient at any sign of trouble. I received dopplers weekly and two separate rounds of steriods (one at 25 weeks one before delivery) Every day seemed ok and the babies were fine, yet it was still agony. Every single day was filled with stress and fear as I never knew if I would find my babies alive at my next appointment! At 32 weeks we all became increasingly nervous with the odds and the gravity of the loss was very real and we delivered. Everyone at my delvery was shocked at the cords and we were told by our peri/MFM that he felt it was a miracle we delivered that day! Hailey and Sydney both came out crying and were wonderful. They both were on a vent for several hours but quickly were off and put on nasal canula. They spent 29 days in the NICU learning to eat and get bigger. Not the easiest time.
They came home without monitors and off oxygen and almost normal, just tiny. They were small. We did RSV shots, and I was able to sucessful nurse for 13 months. The girls have added more joy than I could ever have imagine to our family. Daily I thank God I have them. I appreciate life and their sweet presence so much after going through that horrible pregnancy. They are healthy and chubby and completely normal.

Looking back and knowing how much these babies mean to us and because more current research has been released (The Heyborne study) I am a big advocate of inpatient monitoring. I would demand it. When I delivered my twins it just was not being done routinely. Now with the newest information its being done all the time. My peri (with whom I still keep in touch with) now follows the new protocol. He admits patients between 24-26 and they are monitored 3x a day up to 24 hrs a day till delivery.

All of you recently diagnosed please realize you can survive this and get two miracles. It is full of challenges and trials but you can do it. There is a lot of hope and research out there to help you. I had great success! Please email me or comment. I am happy to help in any way. Reach out to Monoamniotic.org as well. I help (along with Angie) with that site and would be happy to offer support and information. You can also visit my personal blog at http://our-munchkins.blogspot.com/.


Tuesday

Ada and Ashlynn



My husband, Kevin and I were very excited to learn that we were expecting again in April 2014. Weston, our first son would be two in July and we were happy to be adding another addition to our family. I felt pretty nauseous the first several weeks and I also felt like I was showing earlier than I did with Weston. A couple of times I joked with Kevin about there being 2 or 3 in there but in honesty I just chalked it up to showing more with your second pregnancy. At our 8 week ultrasound we got quite the surprise. The tech doing the ultrasound said “And here is the first heart beat…”. I instantly thought, “Oh no, it has two hearts.” Ha. Then we looked up and said “Twins???”. “Yes, Twins!”. We were excited and scared and overjoyed all at the same time. After the ultrasound we met briefly with my doctor. She said that there was a chance the twins were sharing a placenta and that they needed to send us to a specialist to be sure. Our doctor explained the different types of twins and said that they are pretty sure the twins were sharing a placenta only and were in separate amniotic sacs. She told us that sharing a sac was very dangerous and while there are risks with sharing the placenta, they were not as high as sharing the same sac. We made the appointment with the high risk maternal fetal specialists for 10 weeks and went home and told our families the big news.

At 10 weeks Kevin and I went to see the high risk specialists at TN Maternal Fetal Medicine. We were hopeful that the preliminary ultrasound was wrong and both babies had separate placentas and separate amniotic sacs. The ultrasound tech spent a long time looking around in the ultrasound and wouldn’t tell us anything until we met with the doctor. It was the longest ultrasound ever. All we knew was that there were still two heartbeats. After the ultrasound we met with the doctor and our worst fears came true. Both babies were not only sharing a placenta but they also could not find a membrane separating the babies. It looked like the babies were monochorionic monoamniotic (or mono-mono twins). Mono-mono twins are very rare, resulting in about 1% of twin pregnancies. They are also very risky. The doctors gave us odds anywhere from 50-70% of making it to 24 weeks (viability). The main risk for mono-mono twins is cord compression due to cord entanglement since the babies are in the same sac. There were other risks as well. We had hard conversations with our doctors on devastating scenarios that we could face: twin to twin transfusion, where one twin gets more blood and one doesn’t get enough, severe heart and kidney birth defects, defects where one twin would likely die and we could possibly sacrifice one to save the other, situations where one twin dies in utero and it harms the other. I could go on and on with the devastating scenarios we braced ourselves for. Kevin and I made the choice to give our babies and fighting chance and continue the pregnancy. This meant ultrasounds every two weeks and inpatient hospital admission at 25 weeks. I have never been more scared in my life.
The pregnancy was an emotional roller coaster. Every two weeks we went back to the specialist’s office for ultrasounds. At 16 weeks we found out that the twins were girls. I was excited but made myself emotionally unattached to the pregnancy. Before I knew the twin prognosis, I found all of these cute ideas on Pinterest for announcing your pregnancy and gender reveal, etc. Once we knew our situation I didn’t do any of them. I didn’t buy one thing once we found out we were having girls and we didn’t dare put up a nursery. The thought of having to take down a twin nursery or return piles of pink clothes was too much for me to handle. I tried to focus my time on Weston and staying positive. I stayed off Google and read stories from this website on monoamniotic twin stories with happy endings. I read the happy stories and day dreamed we’d be one some day. At the same time I had nightmares that we’d lost the babies and I picked out songs I liked for their memorial/funeral. It was a tormented way to live for months but I did it. There was no choice in my mind. I was going to give these girls a fighting chance and do everything in my power to get them here. I had 33 ultrasounds to check on these girls and I prayed and held my breath that each one would be ok. And by the grace of God, they were ok. The twins were healthy and growing. Kevin and I did pick out names: Ada Vaughan and Ashlynn Vanessa. Whatever happened, we wanted our girls to have names and know how much they were loved.

At 25 weeks I was admitted to the hospital for inpatient monitoring. I remember being so relieved to have made it to 25 weeks but still cautious in knowing that we could lose one or both girls at any time. At one point before my inpatient admission, they gave me an 80% chance of coming home with one healthy baby if we made it to 25 weeks. It was hard being away from my husband and son but I lived on the antepartum ward for 44 days. I had fetal heart rate monitoring 3 times a day and ultrasounds 3 times per week. The nurses, ultrasound technicians, and doctors were fabulous. I was lucky to have great care. I was also able to work my job remotely from the hospital which was a huge blessing. Not only did it make the time pass quickly, it allowed me to not have to burn up all my leave before the girls were even born. Week after week, Ada and Ashlynn continued to grow, have good fetal heart rates and good blood flow between their cords.
My doctors and I made the decision to deliver the girls at 32 weeks gestation. Technically, it was 31 weeks and 6 days because 32 weeks fell on a Saturday. I remember asking one of my doctors if we should plan for Friday or Monday and she said “We take them early on Friday. We don’t go past 32 weeks.” I had heard a story of a patient that tried to wait longer and lost one of her twins. I was scared to be delivering premature babies, but hopeful that the risks of prematurity would be less than the risks they faced in the womb.
On October 17, 2014 via planned C-section, Ada and Ashlynn made their debut. Ada Vaughan was born at 9:20 am and weighed 3 lbs., 14 oz. She measured 16 inches long. One minute later they pulled Ashlynn Vanessa (Baby B) out at 3 lbs., 8 oz, measuring 16 1/2 inches long. I could hear both girls crying when they came out which was so cool and a huge relief. After the respiratory therapists and nurses and doctors checked them out, I got to see both girls before they took them to the NICU. Kevin got a ton of great photos during the delivery and was able to follow the girls to the NICU. After my doctor finished sewing me up, he showed me the placenta with the umbilical cords attached. Both cord inserts were on far ends of the placenta and the cords themselves were entangled but ”loosely braided” as the doctor said. If the cords had been more entangled or had several tight knots, we likely wouldn’t have been so fortunate to make it to almost 32 weeks with these girls. It was a miracle.

Ada and Ashlynn spent 4 weeks in the NICU. They had minor respiratory issues and needed a nasal cannula for a brief time. They also had jaundice and were on a feeding tube and had to learn to eat as they got older. Thankfully, today the girls have no known issues. They are healthy 4 month olds weighing in at 9 lbs. I thank God for them every day and am so thankful our story had a happy ending. I pray for all those out there dealing with a mono mono diagnosis and hope that our story can give you hope that sometimes miracles come in pairs.