When I was a young girl, I remember having a couple that lived a few houses down from me. I would watch them walk their daughter in her wheelchair and often wondered what happened to her. I was told by a friend of my mother’s, “she has water on the brain”, whatever the heck that meant. Although she could not speak, I would go outside to see her and talk to her. She had a large, irregular-shaped head and made sounds that scared me a bit as an ignorant child. Who had thought those same sounds would bring me so much happiness as an adult and that hydrocephalus would be a familiar diagnosis to me today?
Back then, I had a sense of sadness that I felt from her parents and when I heard the news she had passed away, I was horribly saddened and confused. She was too young to die, why her? I wanted to know if she was sick and if she was, why couldn’t the doctors fix her? My mother never discussed it with me. I think she just felt uncomfortable. I was different. I wanted to know more. I wanted answers, but those never came.
As I got older and began to think about marriage and family, I had this unsettled feeling (or intuition) that I would have a special needs child and the anxiety that it caused me was enough for me to make the decision to not have children. I feared that I would not be a “good-enough” mom. My friends knew this about me, and my soon-to-be husband; Mark, also knew. He was fine with it and did not seem to have a concern one way or another.
Well, life takes over and so do hormones. After a couple years of marriage, we both agreed that something was missing and that something was a baby. We started the process of getting pregnant, tried all the tricks and positions. We timed it right, but every month for fifteen months, we were disappointed. We decided to visit a Fertility Doctor and see what the holdup was. I had my tubes cleared, Mark got his swimmers tested and all was normal. I started taking medicine to help me ovulate and nothing worked. Our final attempt involved a hot lunch date with a turkey baster, for lack of better terms. Winner! We got pregnant! I was excited and scared at the same time. Would I get sick? Would I get fat? Would I have a safe delivery? All the first pregnancy thoughts popped in my head, but way too fast and way too soon. My anxiety obviously played a huge role in my life back then and still does, sad to say.
About a month or two in, I got sick and could barely breathe while walking. I went to my Ob/Gyn and he decided to run some labs. When the labs came back, he called me and said, “Your hormones are really high.” I thought that was a bad thing and asked him if he could lower them. He laughed and said, “It isn’t a bad thing, but could mean you are having multiples.” I almost crapped my pants and passed out. He said the extra blood volume can also affect my breathing and iron and so many other things that I cannot remember due to the shock was in.
While Mark was at work, I went to get an ultrasound with my mother. I remember that day like it was yesterday. I can still hear the tech, “Here’s Baby A, and here’s Baby B.” “NO!”, I yelled. “I only wanted one!” I was in a panic and cried. I was not crying tears of joy; they were tears of sheer terror. How are we going to afford two babies? How am I going to work? How am I going to survive this pregnancy? There goes my anxiety again.
Mark met me at my mother’s house that night and I broke the news. I was part excited to tell him and part pissed off that he came over with a bit of a buzz. Why was he drinking and why was he so happy? I was stressed out and he was happy, walking in circles in disbelief and acting like a nut. We had a lot to talk about and a lot to figure out. Where do we start? I knew we had a long way to go and had no idea what to expect.
My pregnancy was not an easy one. The first few months were tough. I was sick and had complications that often come with multiple gestation. I sound smart, do not get your hopes up. I was a few months along and went in for an ultrasound to check the development of the babies. I remember the doctor telling me, not just with words, but with his facial expressions, “The babies have an abnormality with their brains, and we need to do an amniocentesis for testing.” A what?! This cannot be happening!! Not my babies!!
I remember Mark and I just holding each other and crying. We were so scared and had no idea what to expect. We went for the test. It was painful and I had to have it done twice, once for each baby. There were risks involved and we knew that, but also wanted answers about the twins. After the test, I started having contractions, but they stopped. We waited weeks for the amnio results and rescreening ultrasound. It felt like forever. We finally got the results back. All was normal! The brains were just in a developmental phase and the structures were very visible. They were going to be fine. At least for now…
You just do not know what to expect with any pregnancy.
My next few months were full of surprises and at 22 weeks I started to show signs of labor. Labor!! Not now! It’s too soon! What is my body doing? Why is this happening? Am I going to lose them? I was so scared!! My doctor put me on a special medicine that was administered through a needle stuck in my leg and ran off a pump. I had to wear a monitor around my waist, and it was horrible. I would feel the contractions start and as soon as the phone rang, I knew it was the nurse calling me to tell me I needed a dose of the medicine. Every time I had a contraction that lasted too long, I got a dose. It was horrible. It made my heart race as if I had drunk a pot of coffee. I ended up having chest pain from it one night and had to turn it off and take Benadryl to calm my body down. It was a horrible experience. I was on bed rest now, for a month. I lost most of my muscle mass in my legs and got so depressed. My mother came over to bathe me and rub my back a few times. Thank God for her! I watched the Labor and Delivery shows all day and John Edward, the psychic medium. That was the longest four weeks of my life.
At 26 weeks, I went in for a checkup and ultrasound. My doctor looked at me during the exam and said, “You’re in labor, you’re dilated and not going home!” I’m in labor? How? Why? Stop it! "What do we do now?”, I asked. I was then rushed to Labor and Delivery to attempt to stop the labor and save the babies. I was with my mom and Mark was notified. He rushed to the hospital and arrived just as they were putting me on a magnesium sulfate drip. This was a muscle relaxer like no other. Within minutes, I could not sit up, lift my arms, barely speak and got a glimpse of what a quadriplegic felt like. It was scary! I felt helpless. I remember Mark walking in just after the medicine had taken affect. His face was filled with horror and he was crying. I was crying. My mother was crying. We were all so scared, not knowing what to expect.
My doctor came in to see me and told me we just needed to make it to 28 weeks and their survival rate would be much higher. I had less than two weeks to go, I could do it. I was determined to save them, no matter what! During those two weeks, I was tortured with shots to stop contractions, shots to speed lung development, blood draws, poking and probing. I knew it was all necessary, but torture nonetheless. I could not feed myself for the first few days until I built up a tolerance to the medicine. It was a traumatic experience and one I will never forget. I wish I could.
I remember meeting another mother that was pregnant with twins and had been there most of her pregnancy. She walked the halls like a resident and no big deal. We became good friends. I do not remember her name, Elizabeth maybe. She did not keep in touch with me, but I remember her story. She made it to 38 weeks and delivered her babies. They were considered full-term, healthy and beautiful, twin boys…with Down Syndrome. She had no clue and was very distraught. She came into my room a couple days later, crying. She told me about the news and that she was considering giving them up for adoption. She was afraid that she could not handle it or be a “good-enough” mother. This sounded so familiar. I sat her down and told her how amazing she was and had fought so hard to keep them safe and now that they are here, it is no different. I gave her hope and confidence. I was so relieved when she told me later that she was keeping the twins and was already setting up support for them. She was a Rock Star! I knew her superpowers would kick in and she would be fine. I later found out that she moved her family to England for better medical benefits. I wish I could find her and share my story with her. Maybe this book will make it to her one day. I can still see her long brown curly hair that was always a hot mess, but I loved it.
It was now my turn I suppose. During one night that following week, I had this horrible pressure in my rectum, like I needed to have a large bowel movement. Gross…I know, but no other way to describe the feeling. When my doctor came in and examined me, he looked at me very calmly and said, “We need to take the babies, it’s time”. I did not understand why, and he explained that he could see a foot pushing against the membrane and the risk of waiting any longer was higher than delivering at that time since I was 28 weeks. I have to say, looking back, I do not agree with his decision. I think we should have waited, and I will explain why later. We called my husband and told him to come quick, I was being rushed to emergency C-Section.
I was prepped for surgery and given a spinal to numb me from the chest down. I remember the doctor asking me if I could feel the blade touching my skin and I could on one side. He had to roll me to the side to get the medicine to work evenly. I was numb after that. Some people say that they did not feel anything when they had their C-Section, well…let me tell you, I felt everything. I did not feel sharp pain, just horrible pressure, like someone was ripping my insides out. I could tell exactly where they were and what they were doing. It was difficult for me to breathe. You do not realize how dangerous these procedures are until you have had one. I remember waiting patiently for that little noise that all mothers want to hear. I heard nothing. Were they alive? Were they healthy? Would they survive? The next 12 hours were the longest of my life.
We had not seen the babies yet, not up close anyway. Mark got a glimpse as they took them from my body to the NICU, but I had not seen them at all. They rolled me down to the NICU to see them once they were stable enough for company. I was shocked at how tiny they were. Jenna was Twin A and a whopping 3 lbs., 11 oz and Jade was smaller and only weighed 3 lbs., 6 oz. They were skin and bones, not much fat at all and very long. They looked like baby spider monkeys. They still had the body hair that babies have, lanugo I think it is called. They looked odd to me, but they were mine and they were alive. Mission accomplished! I remember seeing babies smaller than mine and that was something I will never forget. Babies that small are not what you expect. They look like aliens or rodents, not babies.
We spent the next few months in the hospital with the twins. We traveled back and forth every day, without missing any in the beginning, then it got exhausting and we allowed ourselves a break occasionally. This was the longest 3-4 months ever! We watched them breathe by machine for the first few weeks. Then, they eventually made it to room air. It was so stressful. They were given numerous medications to speed up the development of their lungs. They had jaundice many times and had more blood transfusions than I can count. It was a roller coaster like no other, with no end in sight it seemed.
Then the day came when Jenna got to go home, but alone. It was bittersweet. She went home on an apnea monitor to record her oxygen and heart and with full-time nursing care. We quickly noticed she was struggling to swallow her milk and had to get a swallow study to find out what was wrong. She was aspirating and immediately taken off feedings by mouth, readmitted to the hospital and scheduled for a gastrostomy tube placement surgery for nutrition supplementation feedings. Jade ended up having the same issue. Now, both babies were in the hospital and having the same procedure. I was so upset. I just wanted my girls home to start a normal life with them. I wanted to have the experience of breastfeeding, just one normal experience as a Mom. That day never came. I acquired the nickname “Elsie”, like the cow. I pumped all the time and had so much milk that I had to buy a deep freezer to store it. Eventually, they caught up and I couldn’t provide enough milk for them, so we switched to formula. That was very difficult for me, since it was the one thing I could do for them that no one else could.
They went home at four months. We had full time nurses around the clock. The monitors went off all through the night, so sleep was not an option. Their heart rate and oxygen levels were very unstable. They required continual feedings via a pump that often came loose and leaked all in their beds. Although I was grateful for the help, it was so unsettling to have people in the house day and night. It was a lifestyle adjustment that would take some time to get used to. It was one we were willing to make, not that we had a choice. The next year was full of hospital visits and doctor’s appointments. We started off going almost weekly for checkups, then eventually monthly. Respiratory infections were our biggest challenge. The girls lost their full-time nursing after the first year. We were cut back to eighteen hours per day and eventually, only twelve. I never understood why our insurance agency took away their care. It was very scary taking care of the girls alone at night. I had no idea their decision to cut our hours would one day change our lives forever.