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!
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