During your child’s hospital stay, asking questions and advocating for your child is critical.
Jennifer Jones, a young, healthy attorney, had no reason to suspect she would have anything other than a perfectly normal pregnancy. It was her first, however, and she did not realize that her weight gain and swollen ankles were much more than the typical byproduct of carrying a child. In her twenty-fourth week, she went to her doctor who noted that her blood pressure was soaring. He diagnosed her with preeclampsia, a dangerous condition that can result in maternal and infant death if left untreated, and admitted her to the Medical College of Virginia. Her physician then determined that the baby should be delivered immediately.
Baby boy Ben entered the world weighing almost a pound and a half. He had multiple complications: lung, thyroid, heart, eyes, and gastric problems. Jennifer was still sick herself, trying to recover from both the effects of preeclampsia and the baby’s birth. She, and her husband Mike who live two hours away from MCV in Farmville, took turns visiting the baby. When she got a ride to MCV, Jennifer would stay all day or several days in a row, sleeping at the Hospitality House near the hospital.
The baby was attached to numerous tubes and monitors in the Neonatal Intensive Care Unit (NICU). It would be more than three weeks before Jennifer could even hold him in her arms. “He had tubes in his mouth and could not cry and tears would roll down his face. That really hurt me.” With cardiac complications that would require surgery as soon as possible, his condition was both serious and complicated.
Having a child in the hospital is frightening.
Baby Ben wound up staying in the hospital for six months and was on a ventilator for 81 days.
Becoming a Patient Advocate
During that time, new mother Jennifer also had to assume the role of patient advocate. She learned a lot.
“I had no medical background, no understanding of these things. So, I asked a thousand questions. I didn’t care about looking stupid. It is important that the doctors know you want more information,” says Jennifer. Her advice if your child is hospitalized? “Do not be intimidated. Keep asking questions until you understand.”
She adds, “I tried to be as pleasant and cooperative as I could. They all did a fantastic job. I developed a strong relationship with the nurses. I understood how hard they worked and appreciated it. They knew how far away I lived, and they said, ‘Call anytime day or night,’ and I did,” recalls the new mom.
Jennifer’s positive relationships with medical providers helped her get information and reassurance when she needed it. “Many nights I simply could not sleep and called them to see how Ben was doing.”
But, Jennifer says, if something seems wrong, do not be afraid to question what is happening. “Once when Ben was in an incubator in the NICU, something fell on the floor. One of the nurses picked it up and was going to put it back in his incubator. I said, ‘Wait, do you really want to do that? I’ll take it home and wash it…’”
One of the biggest dangers in the hospital is that of contracting a hospital-based infection. Ben had a heart valve problem typical of preemies and needed surgery. Days before the surgery, when Ben seemed warm to the touch and fussy, Jennifer sensed something was wrong and brought it to the attention of her son’s doctor. The doctor ordered blood tests, which revealed he had picked up an infection. The baby went on antibiotics, and his surgery had to be put off again.
He was placed on a ventilator.
When Ben had his surgery, Jennifer remembers being very scared. “My husband and I prayed. In the waiting room I read a book on pediatric medical conditions, which was really scary, but again, having that base of knowledge is so important. You do have to be careful though, because reading about every possible complication can make you crazy.”
New Parents: Making Time for Yourself
Becoming a parent is life-changing enough for couples, but Jennifer and Mike were facing even more intense challenges. She had anticipated working full-time until the baby was born, but Ben’s emergency delivery altered the couple’s work and play schedule dramatically. “My husband and I took turns being with Ben,” Jennifer says. The couple had planned a vacation and the medical staff urged them to go, saying it was important to make time for themselves. “We went and the break was very healthy for us,” says Jennifer.
Jennifer remarked that while she and her husband took breaks when they felt they could, she believes strongly that nothing compares to a parent’s love.” Only you [parents] can provide your child with the love and attention he needs. The nurses were great about giving him attention but they have a lot to do. I talked to Ben and read him stories so he would know my voice and know he was loved.”
Baby Ben is home now with his parents. He still has a feeding tube in his Stomach. His care takes up almost all of Jennifer’s time, and six different specialists help with his medical care: a pediatrician, cardiac specialist, endocrinologist, gastrointestinal specialist, pediatric surgeon, and a pulmonary specialist. Jennifer and Mike have to watch for swallowing problems, vomiting, breathing distress, and signs of lung infections such as pneumonia.
But Jennifer says, “It was all worth it. Once we were able to take him off of the tubes and monitors he was a different child; he is learning things, exploring the world around him. It is wonderful to watch and he is the sweetest little boy! My advice is to ask questions, then go with your own instincts and comfort level.”