I’ve copied and pasted this from my CaringBridge site. I wrote this entry after my twins were home from the NICU.
So, I’ve been wanting to tell the story of my pregnancy for some time now. Not only is it hard to find time, but anytime I do have, I try to grab a nap. Raising 3 kids under 3 is hard! Plus, I don’t know that I’m ready to relive all the emotions of my pregnancy. It was really one of the hardest things I’ve had to go through in my life. While the 3 months in the NICU were extremely difficult, I had wonderful nurses and doctors to help in the twins’ care. When I was pregnant, I felt like I was the only one responsible for them. I know the doctors were monitoring me and my family helped me make decisions, but ultimately, the babies were in my body and it felt like every decision I made could have been life or death for one or both of the babies. It was a really heavy emotional time for me.
So, I am going to tell a shorter version of my pregnancy, and not go week by week, as I hope to eventually do. Some day I will have the strength to share everything, but for now, here are the basics.
In the fall of 2011, I was having some health issues having to do with my bladder and kidneys. The issues have since resolved themselves, but at the time it was very stressful going through a bunch of tests and constantly taking antibiotics. I saw countless doctors and specialist and no one could figure out exactly why I kept getting infections. Then, at the beginning of December, I found out I was pregnant. I got extreme morning (rather all day) sickness, and had to leave my job. I didn’t tell anyone I was pregnant because I am very superstitious about not telling anyone until after the first trimester is over.
We planned to tell everyone after our 12 week ultrasound, but we got bad news. The nuchal fold on one of the babies (yes I said one of the babies….we found out it was twins…that was awesome news!) was enlarged. Since the babies shared a placenta, this made them identical. This enlargement could have indicated a chromosomal abnormality in both babies. We were rushed to another hospital for a CVS (where they take a needle and get a sample from the placenta) to find out what we were dealing with. After almost 2 weeks, we got the call that everything was ok and breathed a huge sigh of relief. Unfortunately, this was only the beginning.
At the next ultrasound, it was discovered the babies were over 20% discordant in size. When twins share a placenta, this is indicative of either unequal placental share or TTTS (twin to twin transfusion syndrome) Both are very dangerous, and the survival rates of both babies are not very encouraging. Basically, when it’s unequal placental share, one baby will eventually run out of placenta, and thus nutrients, and have to be delivered because there is no treatment. Babies are only considered viable at 24 weeks, and a full term pregnancy is 40 weeks. In TTTS, because of the shared connections in the placenta, one baby takes the nutrients from the other, and therefore the blood. One baby’s heart will then have to work very hard to pump all the extra blood and the other will start losing functions of it’s organs, starting with its bladder. There is a laser surgery that can be performed for TTTS, but you must meet certain criteria, such as a large enough amount of amniotic fluid, and it is still very dangerous to the babies. The goal of the surgery is to separate the connection between the babies because if one should pass, the other one would get a sudden rush of blood, which can result in brain damage or death.
After this appointment, I frantically searched online for any and everything having to do with TTTS and SIUGR (Selective Intrauterine Growth Restriction.) Luckily, I came across the Website for the Twin to Twin Transfusion Syndrome Foundation. I called the number and left a message, thinking I would get a representative to call me back. Instead, the founder, Mary called me personally. She was an amazing comfort and wealth of knowledge. She also introduced me to another woman who had been in a similar situation. That woman has since become a very close friend…in fact, one of my twins is named for her. I don’t know how I could have got through my pregnancy without either of these women.
So, throughout my entire pregnancy, I was monitored for either/both of these conditions. I had weekly, sometimes bi-weekly ultrasounds. I also changed my care from the original Maternal Fetal Specialist to a to a specialist Mary, as well as other previous patients, recommended. Dr. Julian De Lia was the pioneer of TTTS laser surgery, and we are lucky enough to have him in Milwaukee. He is truly an amazing man, coming to every single ultrasound, even though he was technically on sabbatical. Not only did I make the decision to be in his care because of his expertise, but because the other doctor told me I should consider cord ligation. Cord ligation is basically clamping the cord of the smaller baby in order to save the bigger baby. I couldn’t bring myself to pick to save one baby over the other, so I had to find a doctor that would support my decision. Dr. De Lia was that doctor.
Every week, from week 16 of my pregnancy, I would head to St. Joe’s for an ultrasound. This was the only place I would go, as I was on bed rest. I also had to force myself to drink three high protein Ensure shakes a day, plus try to get as much protein from other foods as possible. I was still nauseous, and food had absolutely no appeal, but I ate for my babies. It was one of the only things I could do. Bed rest was sheer torture. I would lay on the couch at my Mom’s house unable to take care of my other child, Bex. I was completely dependent on my parents and my husband. I felt like such a burden. I also was emotionally drained. Since I couldn’t really do anything but watch TV or go on the computer, I sat all day worrying about my babies and how this was effecting everyone in my life. It was taking an emotional toll on everyone I loved. It’s really hard to be responsible for the pain you see in your loved one’s faces.
My blood pressure was so high at the beginning of each visit from my stress level, that they would have to retake it after the scan. The ultrasounds looked to see what the fluid difference was between the babies, the weight difference, and they also looked at how the blood was flowing from the placenta. They needed to make sure both babies were growing and that there was some good blood flow. The smaller baby had a bad cord insertion, so he did not receive as many nutrients and therefore grew at a much slower rate. They also guessed that since my fluids were in the normal range, that they had a very unequal share of the placenta.
By week 21, I could start to feel them moving around. In some ways it was good, in some ways it was terrifying. I was always afraid I could only feel one baby moving, and that we would show up at the next ultrasound to only one heartbeat.
By some miracle, I made it to 24 weeks. At that appointment, I asked the doctor if I should stay in the hospital for constant monitoring. He hesitated, but then agreed. Even though I had been on bed rest at home, the hospital was a whole new level of torture. I missed my 2 year old terribly and also felt so guilty for everyone else having to take care of him. I had never been away from my son for even a night before this experience. In addition to that, the more pressing concern was for the babies. They would hook up monitors to find the heartbeats three times a day at the beginning. Because the babies were so small, it was hard to find them, and even once they did, they rarely stayed still. One night a nurse sat pressing the monitors on my belly for over three hours. Eventually, they went to constant monitoring,which was so uncomfortable, but I wanted to do what ever I could to save both my babies.
Wow. So, I’ve managed to write quite a bit for an abbreviated version. The rest of my pregnancy and delivery is in the “My Delivery Story” section.