North Providence, Rhode Island, USA
So Much to Be Thankful For…
After a few years of enjoying our freedom as newlyweds, my husband, Taylor, and I knew that we were more than ready to start our family. We took one last vacation to California in January of 2008 and decided that we would throw caution to the wind and see where it took us. I got pregnant the very next month only to lose the baby to an early miscarriage at five weeks. Needless to say, I was devastated. However, we decided to try again, and I got pregnant for a second time the very next month. The pregnancy was going along rather smoothly until my 18-week ultrasound at the end of July, when we found out that our son had a craniopharyngioma (a fatal brain tumor) and was given only a five percent chance of survival if he made it to term. After much soul-searching and many, many tears, we made the grueling decision to interrupt my pregnancy to let our son rest in peace. Losing my son changed me in so many ways. I spent many months in a state of shock, depression and denial. It took all that I had in me to get up each day and live my life as normally as possible. I questioned why something this terrible could happen to us – why did we have to lose another child?
We were given the green light to begin trying for another baby two months after our son passed. It was hard for me to fathom the fact that, although I was still mentally healing, my body had healed itself. As painful as his death was, I knew that I needed to move on with trying for the family that I so desperately wanted. Part of the grieving process, for me, was doing everything that I could to get myself back to a state of normalcy and this meant trying to conceive another child. Six months went by and just when I didn’t think I could stand to see another negative pregnancy test, I finally got pregnant. Looking back, I am glad that it took us six months to conceive again, as this time allowed me to begin healing myself from the inside out. In the beginning, I had been so fixated on getting pregnant again, that I didn’t take the time to deal with the abundance of emotions I was feeling following my son’s death. During the six months between his death and the conception of our third baby, I learned to accept that his death wasn’t intended as a punishment for my husband and I, but a chance for us to grow stronger as a couple.
Hoping that the third time was the charm, I cherished each day of my pregnancy and did everything that I could to stay as mentally and physically fit as possible. I am a healthy eater and routine exerciser by nature and continued this routine throughout my pregnancy. I sailed through test after test and ultrasound after ultrasound. With the exception of the absence of any weight gain for about three weeks in the middle of my pregnancy and measuring a bit behind at the end, everything was right on track. I was due to have my baby girl on Thanksgiving Day (my favorite holiday) and found it extremely ironic that after all Taylor and I had been through, our child was due to arrive on a day set aside specifically for giving thanks.
The day before Thanksgiving, November 25, 2009, I woke up earlier than normal with what I thought was an upset stomach. I was scheduled to have my 40-week appointment that morning, soI decided to just get ready and head out. I had a feeling that I was in labor and determined that the doctor’s office was the best place for me to go. The stomach ache got progressively worse as I drove myself to the appointment. By the time I was called into the examining room, I knew that my upset stomach was really labor pains. Two and a half hours later, at 12:30, my water broke. By then, I was safely at the hospital and ready to meet my little girl. The labor pains really kicked up after my water broke, so I decided to get an epidural. I remember looking up at the clock as the anesthesiologist inserted the needle; it read 1:00 p.m. After two hours of pain-free labor, the nurse informed me that it was time to push. With emotions running higher than I have ever known, I pushed for 20 minutes and welcomed my little girl (all 6 pounds, 4.5 ounces and 19 inches of her) into the world with open arms at 3:05 p.m. From start to finish, my labor was about eight hours. Although I didn’t know it at the time, it was a blessing that Clara came out so easily, as the use of forceps or a vacuum could have been disastrous.
Clara passed all of her tests with flying colors and scored an 8 and 9 on her APGARs. After spending another hour or so in labor and delivery, it was time to head to our room. I remember how proud I felt as they pushed me through the corridors and into the elevator. I was a mother to the perfect little girl cradled snuggly in my arms. Time flew pretty quickly as Clara and I welcomed excited grandparents and aunts into our room. In between the many visits that evening, I noticed that Clara was developing a rash. Upon further inspection, I also found a couple of bruises on her back. Thinking that the bruises were a result of the delivery and the rash just a bunch of freckles, I continued to enjoy the rush of visitors.
Later that night, I decided to send Clara to the nursery so that I could get some rest. She was also throwing up quite a bit of mucus, which I was told was a result of the birth, so I felt most comfortable sending her to a place where she could get the attention she needed. The nurse told me that she would come back around two a.m. and Clara and I could practice nursing again. I remember that I had a lot of trouble sleeping that night. I was just so overjoyed with the thought of mothering such a sweet little girl and couldn’t wait to see her again. At two a.m. on the dot, a woman entered my room, but my baby was not with her. She introduced herself as one of the Neonatal residents and explained to me that my daughter was still in the nursery, as she was under observation because her “rash” had gotten worse. In fact, it wasn’t a rash at all, but something called petechiae, which prompted them to draw her blood for a Complete Blood Sample. The CBC showed that Clara’s platelet count was 14. At the time, I had no idea how critical this number was; all that I knew was something was wrong with my baby. The doctor told me that they would perform another CBC and would get back to me with the results in a few hours. Two hours later, Clara’s platelet count had dropped from 14 to four. At six o’clock on Thanksgiving morning, just a mere 15 hours after she was born, Clara was admitted to the NICU.
Thanksgiving that year was definitely not a happy one for us. Taylor and I spent the entire day being bounced from doctor to doctor. Because the hospital was running on a skeleton crew due to the holiday, it was nearly impossible for us to get any straight answers. As Clara lay in her little isolette, I sat by her side sobbing and feeling helpless. Due to her critically low platelet count, Clara was transfused that day with donor platelets. As her counts rose and fell, so did our hopes. What was wrong with our baby? Why couldn’t anyone give us a straight answer? At one time the word leukemia had been used as a possible explanation for Clara’s low white blood cell count. What was supposed to have been a day filled with joy, visitors and turkey was quickly turning into our worst nightmare. Being the wonderful and resourceful husband that he is, Taylor immediately grabbed my laptop and tried to figure out what was going on with Clara’s platelets. In his search, he stumbled upon a disease called NAIT. It seemed to fit Clara’s symptoms and explain why her platelets were rising and falling like the late autumn temperatures outside. Thursday passed quickly into Friday. Taylor and I stayed by Clara’s side and waited for some answers. The doctors recommended that Clara have an ultrasound of her brain to check for internal hemorrhaging. Thankfully, the ultrasound showed no signs of any bleeding. With the exception of some jaundice and an unexplained low platelet count, Clara was doing fairly well.
I was discharged on Friday, but my baby had to stay behind. I cried as I left the hospital without her. Going home to her empty room, knowing that she was being cared for by doctors and nurses instead of her father and I just broke my heart. But, I knew that I had to stay strong. Throughout the night, we called the hospital to check on her. Clara’s platelet count continued to decrease, so she was transfused with another round of donor platelets. Again, her numbers rose and fell. We spent all day Saturday at her bedside and began to accept our roles as NICU parents. It wasn’t until Sunday morning that we finally got some good news: Clara’s platelet count was holding steady at 60 — such a glorious number to hear after ones like 4, 14, and 29. We raced to the hospital to visit our daughter, who was now four days old.Late Sunday night, we dragged our weary selves home for another night without Clara. I think we were starting to get used to our routine of waking each morning, getting ready and heading out for another day in the NICU. Before leaving for the hospital, we learned that Clara’s count had risen to 85. We knew that she wasn’t out of the woods, but were happy to hear her numbers were steadily increasing. I remember walking into her NICU room that morning and seeing the message that had been scrawled on her whiteboard: Today is Monday, November 30, 2009. My platelet count is 85! After scrubbing in, we headed over to Clara’s isolette to take her temperature and change her diaper – two of our NICU responsibilities. As we finished changing her diaper, two of her nurses came in to inform us that because her platelet count had improved so greatly, we could take Clara home that morning. I was beside myself with joy. Finally, after five days of being a NICU baby, Clara could come home to her Mommy, Daddy and two kitties – Piccadilly and Twinkles. After signing the discharge papers, we packed Clara up and headed home. Before we left the hospital, we had our first family picture taken in front of one of the beautiful Christmas trees that was on display in the lobby. Sometime in the midst of all the chaos we had experienced, the hospital had put up its Christmas decorations. It was time to go home and celebrate the holidays with our little miracle.
Over the course of the next three weeks, Clara’s count continued to rise. A few days before Christmas, we received word that her last CBC showed a platelet count of 385. We could now rest easy knowing that the preliminary diagnosis given to us by the NICU staff – NAIT – was the most probable explanation for Clara’s condition. In June of 2010, it was confirmed via blood test that I am HPA 1b/1b and Taylor is HPA 1a/1a. The doctor apologized to me as she gave me the news. But, to tell you the truth, I was relieved that we finally had a concrete answer to explain Clara’s mysteriously low platelet count.Today, Clara is a healthy, active, inquisitive, lovable and joyful one-year-old. Each morning and night, I make it a point to tell her how much I love her and how special she is to me. One day in the not-so-distant future, I will sit Clara down and explain to her all we went through to have her and how she fought so hard to survive during the first few days of her life. As this narrative comes to a close, it is important to know that this is not the end of our story, but merely the beginning. This year, Taylor and I plan on adding to our family. We know that our next pregnancy will be even more mentally and physically challenging than anything we have experienced, but we feel that Clara deserves a living brother or sister. Because of our great love for her, we will endure any amount of pain. Only Clara knows the pain she suffered while she was hooked up to IVs and poked countless times for CBCs during the first month of her life. We are thankful for the doctors, nurses and donors that helped to save Clara’s life. We are thankful that modern medicine will enable us to have another baby. And we are thankful that someone was watching over our baby girl as she safely entered this world. I think I know who that angel was and to him I’d like to say, “Mommy and Daddy love you and miss you more than you’ll ever know…”