Where do I even begin…
Well, for months now I’ve been telling myself I would begin to put pen to paper to document and share the roller coaster that this pregnancy has been. However, each day I managed to find an excuse to put this off, to get something else more “important” done around the house to prepare for our unknown journey ahead. I was determined again while on bed rest at the hospital earlier this month (being admitted on my 32nd birthday, happy birthday to me indeed) to continue putting together bits and pieces of this story that I’ve started writing dozens of times. Once again, my best intentions to write and blog about our experience were foiled by our little munchkins making their early debut a week into my stay at Mount Sinai Hospital on February 9, 2018 at 4:34pm. Just like every other time I’ve tried to write our story, the ending changed before I could even catch up!
So, while Sean and I are more than thrilled to announce the arrival of our daughters, Olivia Marie (born 1lb 10oz) and Evelyn Jane (born 3lb 10oz), we also want to share a little bit of what has been happening over the past few months.
We found out at the end of October that our babes had developed Twin to Twin Transfusion Syndrome. The girls are identical twins, shared a placenta, but each had their own amniotic sacs (also known as monochorionic/diamniotic twins, or mo-di twins). Twin pregnancies are considered higher risk, but sharing a placenta increases the risk for complications such as twin to twin transfusion syndrome. So- what is twin to twin transfusion syndrome? I’ll tell you, because I certainly did not know until I needed to know- essentially, one twin (Olivia) was giving away all her blood and nutrition to Evelyn through shared blood vessels in the placenta. It is a blood flow/flow direction problem. We were immediately referred to a specialized team at Mount Sinai (people fly in from all over the country to see the doctors here for twin to twin transfusion, so we feel SO thankful to live so close to a medical team world renowned for their work in this area) and we had a pretty surreal but relatively non-invasive inutero laser ablation surgery to cauterize the shared blood vessels responsible for the syndrome. Without the surgery, both girls would have passed away. With these connections abolished, Olivia would no longer send away all the nutrition she needed to grow. Even despite the stressful and unhappy events, it was really amazing to get to watch the surgery and see our little babies right from my uterus on a big TV screen. We saw their little faces, and little feet and hands wave by the camera. These are moments I won’t ever forget. The surgery went as successfully as we could expect, however we also found (even prior to surgery) that there was also placental share issue between the twins. The doctor gave us a pizza analogy, and Evelyn had a larger share of that pizza than Olivia. And although the surgery could essentially separate their blood supply from the placenta, they could not do anything about how this “pizza” was naturally divided. There was no way to give Olivia more of the pizza pie, but we could at least stop her from giving away the blood and nutrients that the placenta was able to give to her from her small share. Since our surgery on November 2, it had been “wait and see” for our Baby B (Olivia). Baby A (Evelyn) had been doing remarkably since the surgery, but unfortunately Olivia was diagnosed with pretty significant intrauterine growth restriction (or IUGR). There was nothing I did to cause this, but also nothing I could do to prevent it. There had been mixed opinions on her prognosis at various follow up appointments, and at best she was given a 30% chance of making it to a gestational age and weight that was viable. Once, during an appointment where we had a new doctor filling in for that visit, we were told to pretty much prepare for her passing in the next couple weeks to come and possibly before our next ultrasound. We wrapped our heads around the fact that we were going to lose one of our babies, prepared for the worst, but then as the weeks continued to pass we continued to see her little heart beating away at our biweekly ultrasounds. She was always still healthy, still feisty, but growing very, very slowly. Each visit we were told she was beneath the first percentile for growth, the 0.1th percentile to be exact. Right up until a week or two before our delivery, we were always reminded that there was a very real possibility that the placenta would fail her before she was big and strong enough to survive out of the uterus, and we just did our best to take things one day at a time.
I was admitted on my birthday (31 weeks and 1 day) and received ultrasounds scans each day to closely monitor the girls and to look for signs that Olivia may be in distress. We waited for signs that she would be better “out than in” you could say. Our doctors wanted us to make it until 32 weeks to be sure that Olivia had grown big and strong enough, and to ensure the risks to delivering Evelyn were also decreased. I just passed that milestone and at 32 weeks and 1 day, my morning scan showed something new. They saw fluid over Livvy’s abdomen, were unsure of what it meant but this new finding was enough for the docs to decide we would have the girls later that afternoon.
We awaited my c-section and hoped for the best outcome for both girls. It was terrifying. I heard both girls cry before they were whisked away to the resuscitation room, and I cried tears of relief. Daddy got to follow them and take pictures while I waited to be sewn up.
The girls were only together for 48 hours at Mount Sinai sharing a room (instead of a uterus) when it was discovered that Olivia had perforated her bowel (she had very fragile bowels from her restricted growth in the womb, as it turns out- a fetus will prioritize organs when it’s nutrition is restricted. Giving the brain and heart the best opportunity to grow, but at the expense of things like the intestines..) and she was rushed to SickKids for emergency surgery. I can honestly say this was the worst few hours of my life, the surgeon emphasizing that death was a very real possible outcome of the surgery for a child so small and frail. But Olivia beat the odds again, showing how badly she wants to be in this world, surviving surgery and absolutely kicking butt post-operatively. The girls remain separated, but Livvy is getting the absolute best care she needs and Evelyn is just a NICU rockstar at Mount Sinai (thankfully only across the street from SickKids) and we anticipate she will be discharged within a couple weeks after some feeding and growing.
This is only the short version of what happened, and I hope to launch a blog soon. I feel like blogging and sharing not my only personal, but professional journey and passions, is a place I have been yearning to go for some time. But I’ve needed a push. What initially started as a dream to share my knowledge on child development, self-regulation, sensory processing, attachment, connection, and building relationship with your child through my pediatric occupational therapist lens has been evolving also into a desire to be vulnerable and share my day to day life as a fellow parent on this roller coaster voyage through life. The events that have been unfolding since October, and the expectation of the journey to come make me all the more motivated to put myself out there. I want to be able to grow from this experience, and feel confident in sharing it with you so that you may get something from this too.
So, here is my blog: Day 2 Day Development. Which will eventually highlight more of my professional knowledge and background but for now will focus on more of the details of my extremely high-risk twin pregnancy, the NICU journey to follow, and then the craziness that will result as we adjust to life as a family of 5 (toddler and twins, three under three!) when we all god-willing return healthy and happy home from the hospital.
And of course, THANK YOU to our amazing family and friends (especially our parents) who have made managing such a trying time as easy as it can be. We love you and appreciate EVERYTHING you have done for us.