Every milestone is a gift.
Anthony a few months old.
Our experience: The pregnancy was full term with no complications but when Anthony was born, he just did not want to breathe or move. Those frantic minutes after his birth blurred into hours and days of little sleep with lots of worry. We just did not know if he would survive. Anthony was born at another hospital and then transferred to University of Iowa. I recall how small he looked on the ambulance gurney during the transfer. Over the next three weeks, Anthony received intensive care at the NICU. Through all of this, we were most fortunate to have skilled, informed and compassionate health care providers.
To allow one parent to be at the NICU, we coordinated work schedules and care for our children at home. To say the least, this was a daunting task coupled with my recovery from a C-section. The nurses, in addition to providing the constant medical care that Anthony required also added personal touches. Simple things such as a Valentine heart made from construction paper with Anthony’s picture helped create a mini-home away from home. They were always ready with encouraging words and were very warm and friendly.
There were a flurry of tests to rule out muscle disorders, heart defects, and digestive disorders. We had many questions and used a white board in Anthony’s room to jot down our concerns. When the team came around for rounds, one doctor in particular would look to that board and take the time to go over all the inquiries. If we were not around, answers would be discussed the next time we did overlap or relayed through the nurse.
The staff do all that they can to inform parents of resources both at the hospital as well as after discharge. We were referred to resources at the CDD (Center for Disabilities and Development) as well as linked to the Grant Wood AEA for development and physical therapy. They helped us adapt our home environment to fit his abilities. Anthony responded to music from the very earliest days. The NICU had CD players in the room and a selection of music to pick from and it worked to soothe him. He liked most styles, except opera. We tried to incorporate music into helping him communicate, we lobbied for music therapy in his special education class and made sure speech therapists knew of his love of music. Anthony is also fascinated by fans and things that flutter so we decorated his room with kites and windsocks. He often gazes out our front window at our flag. Since he enjoyed swinging, we purchased a swing designed for special needs that can be installed at home.
It was clear that Anthony was not going to move, talk, and behave like our other children and for his first few months, he was on oxygen. People were cautious if not afraid to approach us but if they did have questions, we found the best approach was to be straight forward. Most are just curious and will walk away better informed.
That time in our life was draining and all together stressful and we are grateful for the NICU staff in helping us navigate all the uncertainty. Anthony’s condition is of “unknown etiology” and we continue with follow up care at the specialty clinics. It has been five years and Anthony has grown strong enough to eat and walk on his own. He reaches new milestones at his own pace and has a special place in the hearts of everyone he meets.
Tips for new parents at the NICU based on our experience:
- Special needs children have lifetime issues and finding appropriate services is not that easy. So take advantage of the different resources when you are at the NICU to ease the transition when you return home.
- Parents should not hesitate to ask questions! Even if you do not know what the correct medical term may be, ask the nurses and doctors. There were books in the room that were also very informative. Since you will most likely be sleep deprived, do not rely on memory- write down your concerns.
- Take things in stride and take care of yourself. Your child is in good hands at the NICU, so if there are constraints on your time not allowing you to be there all the time, do what you can. It can be stressful, so get out for a walk or some other soothing activity. Friends and family stepped up to help us with dinners, shuttling the other children to events and so on. Don’t be afraid to ask for help, people and organizations are more than willing to pitch in.