Sophia's drawing of her family.
AIW NURSE SHARES HER ANGEL’S STORY
As I peeked into the swaddled blankets surrounding my newest “patient” on the Neonatal Intensive Care Unit of a major hospital, I fell in love almost immediately with the precious little, 4-pound infant girl who had been born with Gastroschisis just 2 weeks earlier at 34 weeks. Gastroschisis is a birth defect that causes the intestines to protrude from a hole in the abdomen. Gastroschisis is an extremely variant disease and affected infants can present with minimal to severe damage. Sophia’s case was very complicated, and she was hospitalized from birth to 11 months of age.
After my first shift of caring for Sophia, I signed up to serve as her “primary nurse.” The NICU where I worked strongly encouraged the role of primary RN because it provided vital continuity of care that was essential for critically ill babies. As a primary RN, you become so attuned with “your” baby that you recognize even the slightest fluctuation in their medical status and can quickly implement appropriate interventions. Far beyond her lengthy hospitalization, this adorable “lil peanut” would take me on a journey that not only challenged my nursing skills but stretched my heartstrings fully and completely.
For approximately 4-6 months of Sophia’s stay in the NICU, we were in an isolation room – just her and me. With no other patient to care for and no other nurse to talk to, Sophia received my undivided attention for 36-48 hours per week. Needless to say, a strong bond developed. I sang to her, read to her, held her and prayed over her. I bought her clothes and blankets. I took them home and washed them. I nursed her through multiple painful and difficult surgeries. I advocated for her in multiple ways, often leaving detailed instructions regarding her specific needs/cares for other nurses to follow on my days off.
However, due to the many post-surgical complications related to her intestines, we were still unable to feed Sophia via her stomach, so she remained on intravenous Total Parenteral Nutrition (TPN). Long-term TPN can cause permanent liver damage. She had a gastrostomy (G-tube) that leaked excessively and wasn’t useful for feeding directly into her stomach. A jejunum (J-tube) was also placed in the hope that bypassing the stomach and feeding directly to the small intestine would allow a decrease in TPN administration. The skin on her abdomen easily became excoriated from gastric acid leakage and required frequent wound/skin care.
When Sophia was approximately 9 months of age, I began training her mother for discharge home. At a little over 10 months of age, the medical team decided to transfer Sophia from the NICU to the Pediatrics Step-Down Unit, where they could better manage her care and facilitate discharge planning. Exactly a month later, I carried Sophia in my arms outside to a waiting car. I watched the captivated expression on her little face as she felt the soft whisper of a gentle breeze for the very first time. I watched her drive away and my heart was hopeful that she would thrive in her mother’s care.
Sadly, in the ensuing four months, Sophia was re-hospitalized many, many times. I learned her mother was not compliant with medical directives. Sophia was suffering as a result. When Sophia was 15 months old, Child Protective Services removed her from her mother’s custody. She was subsequently placed into a pediatric sub-acute facility. I visited Sophia often while she was in the facility and quickly recognized that she was not receiving the level of medical/nursing care she needed. I watched the “light” go out of her eyes. I knew she simply could not thrive there. I came home after one visit in particular and told my husband that I feared for Sophia’s life. I asked him if he would consider opening our “empty nest” to this precious little girl so we could provide not only the appropriate nursing care, but also the love, stability and security she so richly deserved. He agreed and we began the foster parent process.
With the help of Angels in Waiting, we were finally approved as a nurse foster provider. Sophia was 21 months old when she arrived at our home. She still had severe leaking issues with her G-tube and J-tube, her abdominal skin was painfully compromised as a result. She had frequent stool and vomiting and was unable to eat food due to extreme oral aversion; she was not yet walking and she received TPN through the Central Venous Line in her chest for 22 hours a day, 7 days a week. She basically required 24/7 round-the-clock nursing. I subsequently took a leave of absence from my job on the NICU. I was totally confident that Sophia would thrive in our care. And she did.
Progress was achieved incrementally. One-by-one obstacles were overcome as I worked closely with her medical team. The gastrostomy was surgically closed. After trial and error, a formula was found that could be administered through the J-tube without diarrhea or vomiting. Leaking remained an issue, but creative ways to address the leakage and protect the skin were employed frequently. Consistent and sterile line care eliminated her prior frequent hospitalizations for line infections. In fact, Sophia did not have one line infection from the time she arrived in my home until it was surgically removed two years later. Increased administration of formula via the J-tube allowed the infusion of intravenous TPN to be decreased as well. I began to seek out occupational therapy to help Sophia overcome the oral aversion. For a year and a half, I drove her to 4 hours round trip to Children’s Hospital of Orange County two times a week so she could participate in one of the best occupational therapy programs on the West Coast. Slowly, she learned to tolerate a variety of textures and tastes of food, albeit in very small amounts. The ability to eat by mouth – combined with the rate/amount of formula now tolerated through the J-tube – allowed us to stop the TPN altogether.
Today, Sophia is 6-1/2 years old. She has been with us for 5 years. It is truly miraculous to witness the joy of this beautiful, precocious, and intelligent little girl who has overcome so much to run and play and laugh. She loves us (her Nana and Papa) and our home. She is a blessing to everyone she meets. The last hurdle to overcome is the removal of her J-tube. For now, she gets supplemental formula feedings during the night in order maintain her weight. She eats food just like any other kid; however, she doesn’t absorb the nutrients as effectively due to her shortened bowel. Nonetheless, we remain optimistic. Three years ago, we were granted legal guardianship of Sophia. One year ago, we filed to adopt her. The ending has yet to be written. But one thing is certain. Sophia is a gift from Heaven. We will always be thankful for her in our lives.