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 this podcast, she shares personal details on her very complicated twin pregnancy and the difficult choices they had to make along the way. She reflects back on regrets both she and her husband, Pat have experienced as well as what helped them cope through their daughter, Lily’s 256-day NICU stay.
Jessica explains what helped them make the decision whether or not Lily should have a tracheostomy placed and she speaks candidly about what their expectations were after Lily’s tracheostomy placement, versus their reality. She offers frank advice for NICU families, especially those with similar situations who have children with feeding issues, ostomies, bronchopulmonary dysplasia or BPD, pain medication withdrawal, tracheostomies, and what going home looked like for their family with a ventilator-dependent child.
You will be amazed by what this family has been through, but even more so by their strength and resiliency. Sweet Lily has touched so many lives in her short 4 years, and this is just the beginning of her story, I know she’ll pull on your heart strings as well. So sit back and listen to part one of this family’s story with Jessica Wolff.
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Episode 37
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.
Jessica’s Pregnancy with Lily and Autumn
Jessica and Pat underwent fertility treatments after it had taken awhile for them to conceive. Once they found out they were pregnant, they were very excited, but became quickly overwhelmed as they learned they were expecting twins. But, they joyfully embraced the news and were ready to do life with two little girls.
Jessica’s pregnancy was very difficult throughout. She was very sick in the first trimester and she had a significant amount of bleeding. She spent a lot of time between her obstetrician’s office, in the Maternal Fetal Medicine (MFM) department, and in the Emergency Department. At each visit, they were reassured by the professionals, because both girls had strong heartbeats, and although they were both measuring small, it didn’t raise any additional concern early on.
But, that all changed when Jess had her 20 week anatomy scan. At that time, the estimated fetal weight for both girls was less than the 1st percentile and their cord blood flow was inadequate for them to grow. She was monitored more closely and she was being followed by MFM. Two weeks later, they learned that both of the girl’s growth had slowed considerably and the cord flow had deteriorated to absent-end diastolic flow. Absent-end diastolic flow indicates placental insufficiency, therefore, both girls were not receiving adequate blood flow for growth or survival. Jessica and Pat were informed at that point that there was a strong possibility that neither of the girls would make it to viability. The expectant parents were utterly shocked. Jessica explained that it all happened so fast, in a matter of a few weeks, they went from preparing for twins to bracing themselves at each visit in preparation to hear that neither of their babies were still alive.
Jessica was admitted at 23 weeks’ gestation for elevated blood pressures and was diagnosed with preeclampsia. They were able to manage it with medications, but her blood pressures remained rather high. It was then that they began to presume the girls’ Intrauterine Growth Restriction (IUGR) diagnoses and the absent end diastolic flow were both due to Jessica’s preeclampsia.
At 24 weeks’ gestation, Jessica went in for a heartbeat check and stress test, that was when they learned that Autumn had passed away at some point in the previous 2 days. They were also informed at that point that Lily’s umbilical flow had now deteriorated even more so to reverse diastolic flow, so they admitted Jessica.
Lily’s estimated fetal weight was in the uppers 400s. Jessica and Pat met with several neonatologists and the plan was to try and get Lily intubated in the delivery room, but they were not 100% sure they would be able to save her.
At 24 3/7 weeks’ gestation, Lily was having some decelerations and Jessica’s health continued to decline, so they felt it was best to deliver her. She underwent an emergency cesarean section.
Jessica and Pat had previously decided and were adamant that if either of the girls did not make it, they did not want to see them. They just couldn’t do it. So Autumn was delivered and quietly taken away by one of the nurses. Then Lily was delivered and weighed 504 grams. Lily did fairly well in the delivery room and initially Jess did not want to see her either. But her husband Pat, and the entire team in the operating room, including myself as I was the NNP at the delivery, told Jessica how beautiful she was and with some encouragement, Jessica looked at sweet Lily before she was taken to the NICU. Jessica describes that moment as one of the greatest and most heartbreaking moments of her life. It is the one thing she remembers before she went into preeclamptic shock. Due to Jessica’s condition and being on seizure precautions, she was not able to see Lily for another 24 hours.
Autumn
Honoring Autumn
Pat and Jessica did not see Autumn before she was taken to the crematorium. They also chose to not have her ashes given to them, so they were buried. Around Autumn and Lily’s 1st birthday, Pat and Jessica both felt like they had made a gigantic mistake with the decisions they had made in those initial, trauma-filled moments of Autumn’s death and Lily’s birth.
They contacted the hospital and were relieved to hear that one of the nurses had taken several pictures of Autumn. So Pat and Jessica now have an amazing album full of beautiful pictures of their angel. They keep it in a box along with a teddy bear she was photographed with and some additional momentos. Jessica said it is one of their greatest treasures.
We discussed how impossible it is to make such difficult, life-changing decisions while being in a state of trauma-filled grief. Jessica and I both admitted that we regret decisions we made regarding our personal losses. It is the main reason that Jessica has spoken with and encouraged the crematorium to give parents a longer grace period before they are required to make decisions. She and Pat had to decide within 48 hours from when they received Autumn’s body to sign papers regarding the plan for Autumn’s remains. At that point, they were enduring an immense amount of stress regarding Jessica’s health and trying to keep Lily alive. Jessica said that the ability to have more time to make those decisions would be huge for families.
In retrospect, Pat and Jessica deeply regret their choice to not see Autumn or to keep her remains. They actually called to see if they could exume her ashes. They were unable to, but they made a beautiful headstone for Autumn. Pat and Jessica take their children to visit her and they are also very grateful for the momentos created by the bereavement team at the hospital.
Lily
Lily spent 8 months or 265 days in the NICU. Lily’s biggest hurdle during her first month of life was not being able to stool. Contrast studies nor X-Rays gave them any inclination as to why she was not stooling. With each attempt to feed her, her abdomen would become distended, which would then push up on her lungs and make it difficult to adequately ventilate her. She spent time on the high frequency ventilator as well.
On her 28th day of life, the general surgeon decided to take her to the OR for an exploratory laparotomy. She prepared Pat and Jessica that Lily may not survive the surgery and if she did, that she may be left with lifelong co-morbidities. Lily had a difficult time in surgery, but they found a bowel perforation at the jejunum. The surgeon made a jejunostomy, which allowed Lily to be fed, grow, stool, and have a slightly more stable respiratory status.
Despite controlled and planned attempts to extubate Lily, they were always unsuccessful. Jessica said she had several bacterial infections, including MSSA. They felt like it was one thing after another, and with each set-back, her respiratory status would decline more significantly.
Around Lily’s due date, they began discussing her reanastomosis, or reconnecting her bowel and ostomy. But due to Lily being on such high ventilator settings, her parents knew the strong likelihood of Lily needing a tracheostomy.
The difficult decision to get a tracheostomy for Lily
Pat and Jessica were devastated by the thought of Lily needing a tracheostomy. They had previously heard from so many former parents and NICU clinicians that premature babies usually go home around their due date. Yet, here they were nearing Lily’s due date and she was not even close to coming home.
After their initial shock and frustration passed, and once they had spoken with several NICU clinicians who shared their own personal stories, they felt more confident with the decision to proceed with a tracheostomy for Lily. They had decided that they would do what they needed to do to get Lily home and thriving. They would make it work and that is exactly what they did.
Lily had her tracheostomy placed at 5 months of actual age, or 2 weeks corrected gestational age.
Expectations compared to reality
We discussed how Pat and Jessica had felt that once Lily had her trach placed that she would recover quickly and they would get her home. But, that was not the case. Jessica admits that she had not considered the amount of pain and sedation medications that Lily had been on all of the months prior to her surgery that she would need to weaned from. She also had not considered that despite the tracheostomy being placed, Lily’s lungs were still the same. Despite the NICU team explaining the process to Pat and Jessica, she recognizes now that she was not able to internalize it. The realization that things were not magically resolved was very difficult for them to process.
Jessica remembers sitting in the NICU on day of life 150 and Lily was still on outrageously high ventilator settings while withdrawing from several medications and she thought to herself, “What did we do? Why did we consent to this? We are still sitting here stuck in the NICU.”
Connecting with other families
Jessica started to search online and connect with other families who were in similar situations. After speaking with other families that were on the back end of weaning off of medications, or who were adjusting to having their children at home, she realized that they were going to have to weather this horrible period before things would get better.
Jessica said this period of the NICU stay was probably the most difficult because they had come out of their fog from grief and trauma, and realized how far they actually were from going home.
What helped them throughout the NICU journey
Early on after everything they had been through and while Lily was in the Small Baby Unit (SBU), Pat and Jessica wanted to be left alone. Although they understood that their friends and family meant well and wanted updates, they just could not handle it. So Jessica’s Mom was their point person for communication with everyone. Pat and Jessica could focus on Lily and themselves and it was very helpful for them.
Jessica also reflected on all of the friends and family that supported them throughout their NICU journey. She said they had friends who cooked meals for them, sent gift cards, take their dog out for them, plus much more! She knows that with her trauma brain, she would not have been able to articulate what they needed so they truly appreciated everyone who just did kind gestures without even asking. We both agreed that if you want to help any family going through a hardship, do not ask what you can do, just do something to be helpful!
Preparing to take Lily home
As Pat and Jessica prepared to take Lily home, she said it was very overwhelming. The medical knowledge they had accumulated during all of the months they spent in the NICU was helpful to a point. They were comfortable with suctioning, trach tie changes, even trach changes, but they did not feel prepared for emergencies in the way they felt they needed to be.
The nurses ran through bedside simulations with them, but they did not have any experience “bagging” Lily or giving positive pressure ventilation or performing an emergency trach change.
Jessica has since spoken with many families who have children with tracheostomies who are home on ventilators and she has learned subsequently that there are hospitals with very comprehensive programs for parents. Within theses programs, they ensure that parents have mastered all of the necessary skills prior to taking their baby home with a tracheostomy. Parents are required to have completed a certain number of trach tie changes by themselves, they practice bagging their own infant, and undergo thorough education and preparation prior to discharge.
Jessica encourages families who have children with tracheostomies that are preparing for discharge home to seek out additional information at places like Seattle Children’s Hospital or Children’s Hospital of Philadelphia (CHOP) if they feel that they need more guidance and education. Jessica points out that the bigger children’s hospitals where they discharge infants home with trachs everyday have resources on their websites that are very valuable for families.
To be continued…
Closing
We want to thank Jessica so much for speaking so candidly about her family’s very personal story. I know that by her willingness to share details about Autumn’s passing and what they would have done differently will not only impact parents, but hopefully those that work with bereaved families as well. And Lily’s very difficult and long NICU journey is inspiring and I know it will help other NICU families.
On our next episode, Jessica shares what it was like for the Wolff family once they brought Lily home, how they survived through COVID with a ventilator-dependent child, how Lily is adjusting today after her laryngotracheal reconstruction surgery, and more about their new addition to the family, sweet Nolan. You will not want to miss it!
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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