Jenny Cruger Photography
Claire was born 5 weeks early due to complications with nutrition reaching her through the umbilical chord. Although only 5 weeks early, she only weighed 3 lbs., 14 oz. We had already learned a lot about Claire while I was pregnant. At 20 weeks we found out that along with Down Syndrome, she has a major heart defect called an aventricular septal defect (also known as an AVSD). Because of her heart defect, Claire began to show symptoms of congestive heart failure at less than 2 weeks old. This meant she spent her first 6 weeks of life in Vanderbilt Children’s Hospital in the NICU before finally coming home.
Just 6 weeks after coming home, Claire returned to Vanderbilt for her heart repair. It was earlier than the doctors had hoped, wanting her to have grown larger for a safer procedure, but unfortunately her defect was too severe to wait any longer. Her heart failure had rapidly increased and it was no longer an option to wait. So, at just 3 months old, she underwent open heart surgery to patch 3 major holes in her heart and to repair valves. Luckily the surgery was extremely successful and her heart is now functioning very well.
The recovery from surgery was long and difficult, but around 6-8 weeks after she was a whole new baby! It was wonderful! In fact, her very first smile ever was just 1 week to the day after her heart surgery!
Around 6 months of age we had all started to breathe a little easier knowing that her heart was fixed and healing well. I took her to a regular checkup with her pediatrician and mentioned some small red dots I noticed sporadically appearing on her body. He recommended getting a blood count so we did that day. Later that day he called to say that all 3 of her blood counts were low (platelets, white blood cells, and hemoglobin). We were told that Vanderbilt oncology wanted to see her right away. Within 2 days and a million needle pricks later, Claire had a bone marrow biopsy that just days later revealed that Claire had acute myeloid leukemia, a blood cancer.
We as a family were devastated and couldn’t believe the news. Luckily, because we caught it in the early stages, we had some time to wait before starting treatment. For 6 months we went to weekly visits with her oncologist and got weekly blood draws to follow the progression. The doctors chose to wait on treatment because they wanted her to get as big and strong as she could to prepare for chemotherapy, since she was still just 12 lbs at 6 months old. After another two bone marrow biopsies in those months, it was determined just 2 weeks before her 1st birthday that it was time to begin chemo. We had her birthday on a Saturday and checked into Vanderbilt the following Monday to begin her first round.
Because of the aggressive nature of acute myeloid leukemia it has to be treated with the most intensive type of chemotherapy. Therefore, Claire spent anywhere between 4 and 7 straight days receiving multiple rounds of chemo 24 hours a day each round. Then, because it depleted her blood counts and immunity to infection she was required to stay for several weeks in the hospital for her recovery of all 6 rounds. We averaged 3-4 weeks inpatient with a 7 day break at home before returning for another round.
Luckily, we recently learned that Claire is officially in remission from leukemia!!!!! The strength my daughter has shown through this process is astounding. While receiving the same treatment adults suffer through, she kept her sweet and beautiful smile! Even on the bad days, and there were many, she would still smile and push through. Even when she was too weak to stand she tried and tried and then would resort to sitting with her toys. She would play for a short time before wearing out but always found a way to not only smile, but bring so much joy to the staff on the oncology floor at Vanderbilt.
Jenny Cruger lives and works just outside of Nashville, Tennessee in historic downtown Franklin, with a natural light studio and field location for her clients. With a focus on organic portraiture and motherhood, Jenny photographs maternity, newborn, baby/child, and family sessions focusing on connection, simplicity, and organic posing. Soft pastel tones fill her studio and client wardrobe, offering clothing and accessories for mamas and children. Jenny also holds in-person workshops, as well as online mentoring for other photographers.