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In this episode, we discuss NICU stays, navigating complex medical systems, and NICU PSTD. Tanisha Burke-Wormley had a very long and complex experience with the NICU system. At 20 weeks pregnant, she found out that her son had urinary tract blockages and chronic kidney disease, and she had minimal amniotic fluid. She was told that if her son survived (which they weren’t sure that he would), he would need a long NICU stay. They traveled to Ohio to get prenatal care for her son. They did fetal care intervention, meaning they placed artificial amniotic fluid inside her. She also needed fetal care surgery to get a shunt in her son’s kidney to drain his kidney and alleviate the pressure. She also needed steroid shots twice. Before her son was born, she needed to be in the hospital for several months. Her son was born at almost 37 weeks. Once he was born, he was taken immediately to the NICU because he needed respiratory intervention and treatment for his lungs and kidneys. The NICU stay was very overwhelming for Tanisha and her husband. She felt she was missing out on the baby milestones and experiences and felt that the NICU nurses were being more of a mom to her son than she was.
Being at the Ronald McDonald house helped her feel a sense of community and feel that she wasn’t alone. The Ronald McDonald house provided games, videos, board games, live entertainment, meals, tickets for activities around the area, and gifts, as well as a place to stay. Tanisha stayed with her son in the NICU over the holidays and Ronald McDonald house had Christmas trees, Santa, and Christmas carols. They also provide toys and activities for the children who are staying there. Child Life also helped her to cope. They provided activities to help celebrate the child’s NICU milestones, posted pictures of her child, personalized his space, provided toys, provided music therapy, helped Tanisha find ways to bond with her child, made collages of her child from his stay, craft days for parents to get together and make crafts for their children. Social media helped her slightly to cope, but was a bit overwhelming, as some people were providing too much sad news. She was also able to talk to her husband and really bond with him. Care conferences with all of his specialty doctors were also very helpful, since her doctors were captive and she could get all the information she needed from them all at one time. Her son required 10 surgeries prior to returning home. Tanisha felt that she experienced what she terms “NICU PTSD” from seeing her son so sick and having had so many surgeries, and experieincing trauma during his NICU stay. He was sent home from the NICU twice and was rushed right back to the ER for severe medical problems. She started being better able to cope with the PTSD once her son was getting healthier and was home for a full year. To help her coach, she used the NICU pictures and wrote down her emotions from the time when she was in the NICU. Networking on social media helped, as did attending the NICU birthday party and seeing the other moms with whom she traveled her NICU journey.
To manage the complex medical community, it was helpful for her to use the binder from Kangaroo Kids Pouch CLT to navigate all of the information she had. Tubie Friends was also helpful, because she was provided a build-a-bear type stuffed animal which had the same tubes as the children have. Card For Kids was also helpful to uplift her and her son. She decided to do home dialysis, which would be easier on her son’s body and minimize additional appointments outside of the home. Having time to speak with the NICU residents was helpful, as they were great resources. Her home health nurse helps to cut down on extra appointments, as they can do labs and bloodwork in their home. She found the right doctors by watching the doctors in the NICU to see which doctors she liked the most. Jaleel, her son, was also able to obtain some in-home therapies. She recommends that if you have a long commute to the different doctors, to be open about that and ask if they can have multiple appointments on the same day. Working with a social worker to find financial resources and networking with other moms can be really helpful to help manage complex medical conditions.
Tanisha Burke-Wormley Facebook Page
Medical Moms of NICU Facebook Group
Ronald McDonald House
Child Life On Call
Kangaroo Kids Pouch CLT
Cards For Kids
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Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple