Introduction
For our most recent podcast episode, I sat down with Jessica Wolff, a mother who has endured loss and gone through 2 very different NICU journeys. For part one of our podcast, Jessica openly shared details about the complications throughout her twin pregnancy, how they were unsure if either of the girls would make it to viability, when they learned that Autumn no longer had a heartbeat and the difficult decisions they made after learning about her passing, as well as Lily’s delivery and the details from her prolonged and complicated NICU journey. If you have not already listened, I strongly encourage you to go back and listen to Episode 37, The Wolff Family’s Journey Through Loss, a Prolonged NICU Stay, and What They Have Learned Along the Way.
For Part II, Jessica shares what their life was like once they brought Lily home. She explains how they adjusted to caring for Lily with her tracheostomy and the necessary life-saving equipment and how all of that completely changed once COVID hit.
We discussed how the plan for Lily’s decannulation went completely sideways, how they coped with it, and how they learned that Lily actually needed a full laryngotracheal reconstructive surgery. Jessica proudly shares how Lily is doing today, medically, developmentally and emotionally and how they are navigating everything as a family, especially in preparation for sweet Lily to head to Preschool! We conclude the episode speaking about Nolan, Jessica and Pat’s son who they welcomed earlier this year who also spent some time in the NICU.
Jessica shares some great information and advice pertinent to other families who are either currently in the NICU and weighing the heavy decision of a tracheostomy for their child, or for the families who have a child at home with a tracheostomy, as well as families who have suffered or may suffer a loss. Listeners will be surprised to hear some of the unexpected emotions the Lily and the Wolff family has had to work through once Lily had her trach removed. And again, you will be amazed by how strong and resilient Lily and the entire Wolff family is! I hope you enjoy the episode!
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Episode 38
Meet Our Guest
Jessica Wolff
Jessica Wolff is a mother of 3 children, twins Lily and Autumn, Lily is now 4 and Autumn was stillborn, and Nolan, who is currently 7 months old. Jessica and her husband Pat live in central Illinois, 2.5 hours south of Chicago. Jessica’s role is currently in a time of transition. She has been Lily’s caregiver and “medical Mom” for the past 4 years, but as you will learn, their family is about to embark on a new and exciting chapter.
Bringing Lily Home!
Jessica and Pat were thrilled to have Lily at home, but in doing so, it brought on a whole new element of stress for them. Along with Jessica and Pat, Jessica’s parents were both trach-trained in the hospital. So they would come down to their house a week at a time to help with night shift coverage for Lily.
Jessica and Pat also recruited 9 of the NICU nurses that cared for Lily while she was in the hospital to help care for her at home. They would each pick up 1 or 2 shifts to help out which helped to put Jessica and Pat at ease. Most importantly, it allowed them to sleep because they knew the nurses that were caring for Lily. They trusted them, they all had amazing nursing skills, and most importantly, trach-specific nursing skills. Additionally, these were nurses who had known and cared for Lily since her birth.
How the COVID Pandemic changed it all
The Wolff family began to get into a comfortable groove early in 2020 due to the help they had from the nurses. Jessica reflected back on a beautifully organized, color-coded schedule she developed. She admitted that even she and Pat had come to a place of being comfortable caring for Lily at home. And then it all ended.
Once the COVID pandemic hit, Jessica and Pat had to make the very difficult decision to no longer let the nurses come in and care for Lily due to the risk. But they quickly realized with that decision, that the full responsibility was now all on them. Quickly Jessica found that she was not only a medical mom, but also the physical therapist, the occupational therapist, the speech-language pathologist, the developmental therapist, and Lily’s nurse. Although she had help from the therapists via telehealth, the responsibility to catch Lily up developmentally all fell on her.
Over the next year, as they were able to begin weaning Lily’s oxygen down to 21% or room air, and her ventilator settings were low enough that she could spend some time off of the ventilator, they begin to feel more comfortable. Pat and Jessica felt more confident in caring for her and in their ability to manage an illness from home since she was not on such high pressures and they had more back-up options. In the Spring of 2021, Lily also started “sprinting” or spending intermittent time off of the ventilator.
Preparation for Decannulation
Once Lily started “sprinting” and spending more time off of the ventilator, it took her 4 months before she was able to fully come off of the ventilator during the day, followed by an additional month to fully come off the ventilator at night. She went for a sleep study that showed obstructive apnea. Pat and Jessica as well as Lily’s specialists all assumed it was due to trach interference and/or from large tonsils or adenoids that needed to be removed.
Lily was scheduled for her decannulation one year before it actually occurred. Due to COVID and an increase in case numbers, hospitals were not performing elective surgeries so her surgery was postponed. Additionally, they do not decannulate during cold and flu season, so it was put off even longer.
By March of 2022, Lily was admitted for a bronchoscopy that was to be followed by a sleep study. The ENT took out her trach to evaluate the area and her entire stoma collapsed into her trachea. Jessica and Pat had no idea that this was happening and were completely unprepared by the news they received. With all of Lily’s previous bronchoscopies, there were never any signs of her having a floppy airway or any structural issues. They soon realized that her trach was actually holding her trachea open.
Pat and Jessica were completely blindsided when they received the news that she would require a full reconstructive surgery before they could even attempt to remove her trach. Sadly, what they learned was that the longer she had her trach in place, the floppier her airway had become. And perhaps had she been decannulated a year prior, it may not have been an issue at all.
Lily’s Laryngotracheal Reconstructive Surgery
After several studies to ensure that she was not refluxing as well as multiple pulmonary tests, Lily had her laryngotracheal reconstructive surgery in July of 2022. By taking a graft from her rib, they were able to close her stoma. They also placed stents into her trachea that gradually absorb and help to strengthen it. Lily officially became trach free!
How is Lily today?
Jessica shared that Lily is doing incredibly well from a medical standpoint and is very healthy. Developmentally, Lily graduated from Early Intervention before her 3rd birthday. She has caught up physically and cognitively and although her speech has always been quiet, her use of vocabulary and language is outstanding.
Developmentally, she has surprised a lot of people. Jessica said with the amount of clonus and poor tone she had in the NICU, they were led to believe that Lily would have lifelong developmental delays. But instead, she is a happy and active little girl who can often be found running around and singing.
Lily remains 100% G-tube fed and they are currently working on feedings.
Emotionally, Jessica shared that Lily is beginning to have more of a difficult journey. She is hyper-aware of all of the medical care they continue to do. Anytime they walk through the hospital doors for an appointment, they all brace themselves for what they may hear or feel due to all of their previous experiences and PTSD.
How did they prepare Lily for her surgery?
As the family prepared for Lily’s decannulation, they had to walk a fine line with how they prepared her. Her trach was what she had known for her entire life. Additionally, in explaining that soon her piece of silicone and ties, or what they referred to as her necklace, was going to be gone, they also had to tread very carefully since they were not 100% certain it would happen. Sadly, they had prepared her previously and it didn’t happen which led to additional confusion coupled with unnecessary anxiety and worry.
With any planned overnight stay or hospitalization, Pat and Jessica were always open and direct with Lily. But they also learned that there was a delicate balance in how they prepared Lily for upcoming procedures and surgeries. If they prepared her too far in advance it often led to prolonged worry and sleep problems. Jessica expresses that Lily is living with some significant trauma and PTSD, which is uncommon for most four year olds.
Adjusting to Life Without Her Trach
After Lily’s surgery, she was sedated for a week. But when she woke up, it took her a couple of days to realize that her trach was gone. Lily has subsequently told Pat and Jessica that she misses her trach. Jessica said it was a really hard to explain to her that she didn’t need it anymore and it was a great thing! But, it was such a part of her for her entire life that she mourned the loss of it. Jessica and Pat were not expecting this reaction from her.
Jessica shared that when Lily had her trach in place and she would sneeze, she used to cover her trach cap or else it would often fly off. A month after surgery, out of habit, she still covers it. Jessica said sometimes she laughs when she does this, and sadly, other times she cries. It has been an interesting adjustment for all of them. Jessica shared that they have leaned on some other trach families who have older children with trachs, but every child handles it differently and there is not a handbook to guide families.
Navigating How to Best Support Lily Through Her Trauma and PTSD
Jessica said that they have worked closely with child life during Lily’s time in the hospital, but child life specialists do not come home with them, so it makes it more difficult to navigate. She shared that Lily is going to start play therapy with a therapist who has experience working with children who have medically complex needs. They are hopeful that they can work with her to come up with some other ideas to help Lily through everything.
Jessica said that for so long they have been living in survival mode. Everything they did was to keep Lily alive. They focused on concrete outcomes ensuring that she could walk, eat, and breathe. But now, those outcomes are no longer at the forefront of their collective focus. She admits that they are in completely uncharted territory. Looking back, she said that they never could have imaged or predicted that their family would be where it is today with Lily.
Pat and Jessica had no idea back then if Lily would ever have the cognitive ability to understand what was happening to her. Lily received the DART protocol or steroids while she was in the NICU, which have been linked to negative neurodevelopmental outcomes, but they are often necessary to help wean infants from the ventilator. But Jessica admits that back then when they agreed to another round of steroids, they were not thinking of Lily being in 1st grade or college, they were just trying to keep her alive.
Parenting Lily Through the Second Phase of her Medical Life
As the Wolff family enters into the 2nd phase of Lily’s medical life, they are apprehensive. Lily has never been around other kids and her social skills are very different than a typical child her age. She has only ever been around adults and medical professionals her entire life. Additionally, as Lily starts preschool, she will be doing so with a scar on her neck that stretches from ear to ear. She has physical representations of everything she has been through.
Although Jessica admits that Lily is one tough broad who has always been able to stand up for herself, but as a mother, she cannot help but be protective of her. Jessica said that Lily has had a will to live from day one which has now translated into this spunkiness she exibits. Despite Lily’s spunkiness, Jessica is concerned that someone is going to break her heart which leaves Jessica feeling unprepared to parent in the traditional sense.
Welcoming Nolan
Pat and Jessica found out that they were unexpectedly pregnant. Jessica learned after the girl’s delivery that she had a series of 3 different clotting disorders which were ultimately responsible for their preterm delivery and Autumn’s stillbirth. Luckily, it was treatable with prophylactic Lovenox that she took throughout the pregnancy. She also had gestational diabetes.
Nolan was born in January after Jessica went into preterm labor at 36 weeks’ gestation. He was small and had some respiratory distress so he spent some time with the Wolff’s NICU family for few weeks.
A New Perspective
During Nolan’s time in the NICU, Jessica gained a new perspective and appreciation for other NICU families. She admits that when Lily was in the NICU, she had a prejudgement of families who were there with term or late preterm infants. She felt that they had no comprehension for how difficult their personal NICU journey was. After Nolan’s time in the NICU, Jessica now admits that when you do not anticipate a NICU admission and it occurs unexpectedly, it is also very traumatic.
Jessica said Nolan is a delightful human being. He is allowing them to experience parenthood in a way that is more typical, but completely new for them. Nolan has started to crawl and has two teeth. They are experiencing so much joy and he has made their family complete.
Advice for other families
For families in the NICU weighing the decision for a trach for their infant
Jessica said that as a parent, weighing the decision of a tracheostomy for your child may sound like the most horrible decision you’ll ever have to make. But in reality, she feels that it is the best decision you can make for your child. Because Lily had her trach, they were able to bring her home and watch her accomplish things that would have never been possible in the hospital.
Although people in the public would express sympathy for their situation if they were ever out, Jessica and Pat know that Lily’s trach is what gave her life and what led to this spunky, thriving little kid. Jessica said that she would not have changed the decision for anything because it made her who she is today. Jessica has spoken to several other trach families who feel exactly the same way. The decision that you have to make in the moment sounds life ending, but in reality, it is just the beginning and they are living proof of that.
For families who have children at home with a trach
Jessica wants you to know that you are not alone. Although you may be sitting there at three in the morning silencing a pulse oximeter, there is someone across the country doing the same thing. Whether it is through your hospital, or a social worker in the hospital, or someone online like her, just know that there is a community of people to lean on for support. Many families have learned ways to make their life easier and are willing to share those ideas and support other families through it.
For families who may experience a loss
There is no preparation for parents to hear the words “there is no heartbeat.” Jessica encourages families to ask questions. Ask to speak with a social worker or a bereavement coordinator, or someone who has some experience while you’re in the hospital so you know what all of your options are. Jessica said that when they had to make decisions, they did not have the ability to do so for themselves so they put it off which they now regret.
Lily’s Update
Lily started preschool after we recorded the episode. Jessica said she loves school and is learning how to interact with other children in a group setting! After four years of medical isolation, she is enjoying exploring the world and experiencing new things.
Closing
A big thank you to Jessica for taking the time amongst her family’s very busy lives to sit down with me and share so many intimate details about their journey. It is so fantastic to hear how well Lily is doing now and I pray that she continues to thrive and to heal emotionally after everything she has been through in her 4 short years!
I hope other families were able to gain some value from hearing the Wolff family’s story. As we all know, every baby is different, but it is always nice to be reminded that you are never alone in your journey. As Jessica mentioned, please lean on other similar families, the social worker, or even a therapist for yourself or your child.
To get in touch with Jessica or to learn more about their life, and to see examples on how they did their home, stroller, and car ventilator set-up, as well as examples from other families, find her @lilyslittlelungs on Instagram.
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