Introduction
Bringing a baby home from the NICU is an unforgettable and exciting day for any parent. But, despite all of the coaching and empowerment provided by the NICU, the time at home with a NICU graduate may be more challenging than parents ever anticipated. For many NICU babies, their medical journey does not close once they walk out of the NICU doors. Unfortunately, there really is not an adequate way to fully prepare NICU parents for the days, months, and sometimes years that follow their discharge from the NICU, especially for children with complex medical needs.
For this podcast episode, I sat down with a former NICU Mama who shares her family’s trials and triumphs as they have navigated through their post NICU days. She shares what she has learned along the way and she wants to emphasize to parents, that it’s okay to not be okay.
Alissa MacDonald is a friend and co-worker of mine in the NICU. In this podcast, she shares their personal story of how their son, Tegan, a former 24-weeker became part of their family. Despite both Alissa, and her husband Matt being medically trained and prepared for a foster child with medical needs, they were not aware of the monumental impact Tegan would have on their lives as they previously knew it. Alissa speaks frankly on the challenges they have faced and how important mental health, support from family and friends, and making their marriage a priority has been. She reflects on how even as a NICU nurse, their days at home with Tegan were very different from what she had envisioned. She was not prepared for the mental and physical toll it would have on her and their entire family.
We discuss how it is not unusual for former NICU parents to feel overwhelmed, unprepared, angry, and alone in their post-NICU journey. Alissa touches on how important it is to find the right community and support system so parents do not feel alone in their journey. Alissa also points out tangible ways friends and family can help support parents while they are in the NICU, PICU, or at home to ease their journey.
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Episode 23
Meet Our Guest
Alissa MacDonald
Alissa MacDonald is currently a NICU nurse who just finished her Neonatal Nurse Practitioner degree from Baylor University. She and her husband Matt have three boys, two of whom they adopted out of foster care this year. Her professional and personal lives collided in 2019 when she and her husband received a phone call for foster care placement of a former 24-weeker who was in the NICU where she was currently working. Tegan came home with the MacDonald family in July of 2019 and their lives forever changed. Almost 3 now, Tegan is happy and thriving at home despite many complex medical needs and disabilities. Alissa is a proud preemie mama, a fierce advocate, and a mother who is devoted to helping other families navigate the complex post-NICU world.
Tegan’s NICU course and how he became part of the MacDonald family
Tegan was delivered emergently via a cesarean section at 24 2/7 weeks. He experienced a fairly typical course for a 24 weeker. He spent time on the high frequency jet ventilator, had a bout of sepsis, chronic lung disease, and had his PDA coiled. He has endured long-term complications related to his airway trauma, chronic lung disease, complications from his PDA coil, feedings problems, and aspiration. The majority of his complications arose when he was 40 plus weeks corrected gestational age and was unable to be weaned off of oxygen and could not bottle feed. He spend 6 months in the NICU. Alissa shared that Tegan has since been diagnosed with cerebral palsy (CP) and autism and has global delays.
Alissa and Matt MacDonald started the foster care process in January of 2019. Alissa had actually taken care of Tegan in the NICU where we both work. They were in the final stages of finishing up their paperwork to become licensed foster parents and they received an unexpected phone call while camping. They were informed that they had a child for them in the NICU and quickly learned that it was Tegan.
Initially, Alissa was unsure if they were ready as a family for Tegan and his potential long-term complications. He was still oxygen-dependent and Alissa knew he was likely to have complex medical issues. But, Matt wanted to meet him. He held him one time and fell in love! Alissa and Matt officially adopted Tegan in June of 2021, 2 years after they brought him home.
Comparing what they had envisioned to their new reality
Tegan’s care at home versus the NICU
Alissa said if there was one word to describe her feelings shortly after they brought Tegan home it would be …Shock! She now admits that she 100% underestimated what their life at home would be like compared to what she had envisioned. Not only is Alissa a NICU nurse who at that time was training to become an NNP, but Matt is a critical care paramedic. As a couple, they were well-equipped with all of their medical training, but now in hindsight, she realizes that they were not at all prepared for what was to come. With Alissa and Matt’s work schedules needing to alternate so one of them was always home with Tegan, they quickly became aware that he required care 24 hours a day, 7 days a week.
She spoke about the vast difference for parents while their baby is in the NICU versus being home alone with an unstable child. In the NICU, there are always adequate resources and equipment, but at home, she often found herself alone when Tegan started to lose his airway, desaturate, and aspirate. She said it was entirely different than his care in the NICU.
To add to the complex medical care they were providing in their home, they also had to manage a large number of appointments, therapies, insurance denials, and phone calls. With a child that has special needs, there are several agencies involved as well as several therapists and nurses going in and out of the home. Alissa pointed out that many of the appointments were also very stressful and emotionally draining as Tegan would often get a new diagnosis or comorbidity added to his problem list. The post NICU experience places a large amount of stress on the parents and the family unit as a whole.
Getting out the door for appointments
We discussed how difficult it can be to just get out the door for appointments with children who have complex medical needs. I personally remember making sure we had enough oxygen tanks, all of William’s equipment, and the time it took to get in and out of the car each time was insane.
Alissa explained how difficult it was to even get to appointments due to Tegan’s reactive airway. Especially in the summer months when it was humid, he was very unstable due to the risk of his airway collapsing which made their 2.5 hour trips 2-3 times a week to St. Louis even more difficult to navigate.
Perfect storm for mental strain and unwellness
Alissa and Matt look back on the first year of having Tegan home and realize now that they were in complete survival mode for a long time. It was a time of complete physical, mental, and emotional exhaustion. Alissa also felt additional pressure due to her professional experience as a NICU nurse. Tegan’s physicians relied a lot on Alissa’s expertise and daily assessments of Tegan which compounded her anxiety. The MacDonalds experienced the typical initial excitement and triumph of bringing a baby home from the NICU. They felt as though they were done with his intensive medical needs and it was actually quite the opposite. Tegan was quite critical and he had a total of 6 admissions to the PICU during his first year home, the initial one just 10 days from his NICU discharge. Alissa said it was around the third PICU admission, that she and Matt realized that this was their new reality. Looking back on it now, she now realizes how traumatic those experiences were for her.
How the experience has impacted her professionally
Although we try our best in the NICU, do we fully prepare parents for some of the challenges they may encounter once their baby has been discharged from the NICU? Alissa has now gained a new perspective as a NICU nurse and future NNP after bringing Tegan home. She realizes, especially now just how important it is for those of us that work in the NICU to try and adequately prepare parents for how difficult it may be for them post discharge. She sits down with parents and has more realistic conversations with them to let them know that their first year home may be very difficult. She ensures that they know that it is okay to not be okay and she paints a more realistic picture for them so they are adequately prepared for just how stressful, traumatic, tumultuous, and hard it may be for them.
Alissa believes parents should be prepared for all of the upcoming appointments and for their life to completely change once they bring a child home with complex medical needs. She feels that if we can prepare parents for the potential long-term strains, that we are doing them more of a service. Without proper preparation, parents often feel that their situation is abnormal. They begin to feel that something is wrong, when in actuality, it is common for NICU babies to encounter future complications and extra medical needs.
The impact on their family unit as a whole
Siblings
Alissa spoke openly about the impact of Tegan’s medical needs on their family. She said there have been some very positive aspects, but other times it has been very difficult for their family. When they brought Tegan home, their son Jace was 2.5 years old and their eldest son Jacob came into their life one year after Tegan had been home. Matt and Alissa are very intentional in ensuring that all of their children get the time they need. She admitted that it is a balancing act and difficult to juggle the time appropriately, but they know it needs to be a priority. She notes how important it is that the other children in the family do not feel as though their whole world revolves around their sick sibling.
Alissa said their son Jace has proudly stepped into the role as the big brother and he is very protective of Tegan. With Tegan in their lives, she feels that is has brought out more compassion and empathy in Jace.
Marriage
With Matt and Alissa working on opposite days so one of them can be home with Tegan, it has strained their relationship. She said prioritizing time with your spouse or significant other is essential. Although their time alone may not look like it did previously, they have adapted and found ways to connect with each other with something as simple as a meal delivered to their home.
Extended Family
Alissa acknowledges that although she would have loved for all of their extended family to step in and learn how to care for Tegan, that it is not a realistic expectation parents can have. She said parents of medically complex children need to be cognizant and prepared that not everyone is equipped to care for children who require additional care. Alissa pointed out that is does not mean that they do not love the child, but it may just be too difficult or stressful for them.
Support of family and friends
We also discussed some tangible ways that friends and family can step in to help the family as a whole. She pointed out how her family has stepped up and taken care of Jace and Jacob while she and Matt are at appointments with Tegan. Not only do they take care of them, but they ensure that they feel special, are happy, and enjoying themselves which means the world to her. Alissa said it has meant so much when her friends or family drop food off at the hospital or at home without any strings attached. Or how great her friends have been who are willing to just sit there with her, listen, and support her especially in the difficult moments.
We discussed how gas cards, food gift cards, or meal deliveries are amazing, but also consistent, intentional check-ins or prayers mean so much. If you have someone who either has a sick child, family member, or is just going through a rough, stressful time, do not ask what they need, just do something. It is difficult when you are enduring such stress and turmoil, to be able to pinpoint what your needs are, so any act of kindness or generosity will be appreciated.
Closing
Thank you so much to Alissa for sharing her family’s story with us. I think it is so important for us to not only share the feel good topics, but to also address some of the difficult conversations because it does affect so many NICU parents. We want all of the parents out there to know that you are not alone, you are doing an amazing job, and it’s okay to not be okay.
We hope that by spotlighting some of the common struggles and difficulties that NICU parents endure after their baby’s discharge, that it will help parents to know that they are not alone in their journey.
Please join us next time as Alissa and I continue our discussion. We focus on the importance of making mental health a priority for parents, especially if you have an ill child or one with complex medical needs. She discusses how as a mother of a child with complex medical needs as well as cerebral palsy and autism, she has had to work through grief. She recognizes that although she has an immense amount of gratitude that he is alive, she has had to work through the grief of what Tegan’s life would look like without his disabilities.
We hope you can join us next time! As always, please share this podcast episode with someone who would gain some value from it!
Contact Alissa MacDonald
Remember, once empowered with knowledge, you have the ability to change the course.
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