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Tara’s Story: Cheers to Living in the Present

April 30th, 2022  | HIElights of Hope

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Name: Tara Grossman

Location: Massachusetts, United States

Child’s Birth Year: 2011

Keywords: Pregnancy after HIE, Different Outlooks Between Spouses

“Never worry about the past, it brings tears. Don’t think too much about the future, it brings fears. Live in the present moment with a smile, it brings cheers!”

-Ravi V. Melwani

Tara and Matt have four children, Lyla, Wyatt, Joy, and Myles. Lyla, their eldest, is their HIE daughter. Before Lyla was born in 2011, and even for the first few years of her life, Tara had no plans to be at home full-time. But, after Wyatt was also born with a congenital heart defect, which required an open heart surgery to be corrected, all that changed. Life with a family of six is somewhat chaotic, but Tara continues to find excitement and joy in the chaos.

A day before her due date with Lyla, Tara excitedly went to the hospital after she felt her water break. A few hours into labor, one of the nurses suspected the cord might be wrapped around Lyla’s neck, so she called a more experienced nurse to confirm. The experienced nurse, however, brushed off the concern, telling Tara it was just her cervix. At that point, Tara was moved to another room, since she was not yet near active labor. A nurse reassured Tara that, although they were turning the heart monitor off so she could get some rest, someone was tracking the monitor at the nurse’s station. Finally, after what felt like just sitting and waiting for hours, Tara felt the urge to push.

As Tara pushed, a nurse gasped at the fetal monitoring report. It showed that, at some point, Lyla’s heart rate had dropped below sixty beats per minute. The entire time, Tara assumed a nurse at the nurse’s station was continuously monitoring Lyla’s heart rate like they said they would, but this wasn’t the case. To complicate matters further, as Tara neared the four-hour mark of pushing, the OB noticed that the cord was, in fact, wrapped around Lyla’s neck. The OB tried to do an episiotomy and snip the cord, since it was wrapped so tightly, but the forceps didn’t work. He also attempted a vacuum extraction to expedite the delivery, but the vacuum suction kept popping off Lyla’s head.

When Lyla finally came out, she was floppy and blue. Instead of that magical mother-daughter bonding moment Tara had always dreamed of, Lyla was rushed to an incubator at the back of the room. Tara will never forget hearing the doctors counting and performing CPR on her baby girl: “1, 2, 3. 1, 2, 3. Okay, baby, come back, come back to us.” Tara remembers thinking, “Come back from where? Is my baby gone? Please don’t let my baby be gone.”

Eventually, Lyla was resuscitated and transferred to a higher-level hospital in Boston. Tara is grateful that a nurse advocated on Tara’s behalf, to get her a private room at the new hospital. It would have been too emotionally triggering to be in a room with another mom and her newborn baby.

By the time Tara arrived at the hospital in the city, Lyla had begun the cooling process, hooked up to oxygen and IVs. This was a stark difference from when Tara first laid eyes on her daughter at the previous hospital, before Lyla was covered in a sea of wires—before Lyla looked so unbelievably helpless. During the seventy-two-hour cooling process, Lyla had a brain bleed and experienced seizures, both of which, fortunately, were able to be controlled. Lyla spent a total of seventeen days in the NICU.

However, after only a week at home, she landed back in the hospital due to subcutaneous fat necrosis and hypercalcemia, rare complications from hypothermic cooling. She spent a week as an inpatient and was then discharged again, this time on low-calcium formula.

The experience in the NICU was far from easy, but remaining grounded in the present, and holding onto those inchstones of progress, helped Tara push through. Tara’s brain doesn’t tend to jump to the “what-ifs” or the “what’s-gonna-happens” of the future, a quality that helped her cope through the first weeks, months, and even years of Lyla’s life. Instead, she draws positivity from every little thing and focuses on what is right in front of her.

For instance, when Lyla was first born, her kidneys weren’t functioning at all. After trying a variety of different cocktail combinations, Lyla finally had urine output when she was a few days old. Even though, to an outside observer, this may have not seemed like a huge deal, Tara celebrated this as a sign that incremental progress was being made. When Lyla received different tests in the NICU, Tara didn’t fall down the rabbit hole of viewing the results as the be-all and end-all. Rather, she held the mindset that the tests were not an assessment of who Lyla was as an individual, nor did they unequivocally define what Lyla would or would not be able to do down the road. Instead, the tests were simply snapshots in time and a way for the healthcare workers to figure out the best treatment plan for Lyla.

For Matt, the NICU experience was definitely more emotionally draining, as he is very much someone who likes facts, numbers, and percentages. He so badly wanted definitive answers about the future, but, with HIE, there really is too much uncertainty to provide an exact prognosis in the early stages. Tara wishes someone in the NICU had offered Matt the chance to see a therapist, because, even if he had not been open to going down that avenue, it would have been nice to have the option. As parents, they felt tossed into this vastly overwhelming world. So, while having great resources to help manage Lyla’s care upon discharge was great, they wished they’d been given more resources to help them take care of their unique mental health needs as well.

Once Lyla was finally home after the NICU discharge and subsequent hospitalization, she immediately qualified for early intervention through the state. For the first year of Lyla’s life, each day was booked solid. There were four different people coming in and out of the house multiple times a day—the occupational therapist, physical therapist, speech specialist, and developmental specialist. On top of that, Lyla constantly had follow-up appointments with specialists, such as the neurologist and nephrologist.

Tara felt like she was living in a fog-like state, trying desperately to focus on the positive and take it one day at a time. While it’s, of course, great to focus on the present, in many ways Tara thinks it clouded her ability to anticipate what Lyla might need down the line. For instance, Lyla ended up getting fitted for an ankle foot orthosis (AFO) much later than many other children Tara has seen in the Hope for HIE group. Tara didn’t find the Hope for HIE group until Lyla was five years old, since she wasn’t actively seeking out parent support resources. Looking back upon her journey, Tara wishes she’d found the group earlier on, since, for so long, she was in the dark about many different things. Tara would tell other HIE parents to find the middle ground between looking ahead at the future and enjoying the present—a middle ground between her approach and Matt’s.

When Lyla was one, she woke up more, and became more alert. On the day of her second birthday, she started walking. As time went on, Tara and Matt found themselves able to relax a little bit more as Lyla continued to become more independent. Now, on top of OT, PT, and speech, Lyla also does hippotherapy, which involves the use of horses. Not only does hippotherapy help with Lyla’s core and muscles, but it’s been very therapeutic for Lyla to form strong bonds with the horses. It’s been a joy for Tara and Matt to witness Lyla growing into her own person, learning about her own body, and adapting to life based on her own abilities. Overall, Lyla is a super happy, headstrong, and confident girl, and she is certainly not afraid to voice her opinions. She loves spending time with her younger siblings, doing arts and crafts, playing outside, going on her bike, and horseback riding.

At school, she spends time in both an integrated classroom and a sub-separate classroom for children with disabilities. One of Lyla’s most special characteristics is just how empathetic and attuned to other people’s emotions she is. For instance, if Tara feels down or stressed out about something, Lyla will be the first in the family to ask if she needs a hug.

Every day, seeing Lyla and knowing she is here, brings Tara so much hope. Especially since Lyla developed epilepsy when she was three, hope has come to have a different meaning. There was always a faint voice in the back of Tara’s mind, worried that Lyla would have a breakthrough seizure. Because of this fear, Tara and Matt were afraid to let Lyla do certain things. For instance, sometimes the three youngest would stay up late, but Tara made Lyla go to bed early so she would get enough rest. Soon, though, Tara realized that what hope meant for her, first and foremost, was making sure Lyla lived her best life possible. She realized that allowing her own worries to hold her daughter back from trying out certain things was preventing this hope from actualizing into reality. Now, Tara tries to instill in Lyla the notion that, while she may encounter obstacles in life due to her disabilities, that’s okay. What is not okay is letting the fear of those obstacles stop her from exploring the world around her and trying out activities she’s genuinely interested in.

Not only does Tara teach Lyla these important messages, but Lyla and this HIE journey have taught Tara much in return. Lyla has reinforced the idea that children are resilient, amazing, and beautiful in any way that they are. Lyla has also opened Tara’s eyes to just how incredible current medical technology is and how incredible healthcare professionals, who tirelessly work to help children and families thrive, are. And the entire journey has shown Tara that it’s okay at times to get frustrated, cry, or be stressed out about what the future might hold. But it has also shown her that she has the ability to push herself to let the hope and joy in the daily struggle resonate more than the fear of the unknown.

The quote Tara reminds herself of during this lifelong journey is, “Never worry about the past, it brings tears. Don’t think too much about the future, it brings fears. Live in the present moment with a smile, it brings cheers!” In her experience, she has found this to be so true. When she revisits all that happened with Lyla’s birth, and spirals with thoughts of what she could have done better, it only brings her sadness and guilt. When she and Matt hyper-fixate on what problems will arise in the future, it often conjures fear of all the unknowns. But when she truly immerses herself in loving Lyla for where she is at this given instant of time, she feels the joy of motherhood spread over her.

The NICU neurologist, in response to Matt’s questions about when, specifically, Lyla would accomplish certain milestones, told them: “All I can say is, I don’t have a crystal ball. All I will tell you is to just go home, enjoy your baby, and be happy.” That’s the biggest piece of advice Tara would give to other HIE parents too—do your best to enjoy your child as much as you can, even though it may be difficult to look beyond all the complications. For instance, when Tara used to watch over Lyla as she laid on a mat, she pushed aside those questions of, “When will Lyla roll over? Will she ever even be able to roll over? Will she be okay?” Instead, she looked at Lyla and appreciated her daughter for all the little things that made her so wonderful. Tara explicitly told herself, “Look how cute Lyla’s tiny toes are” or “She has the sweetest cheeks and most beautiful head of hair.” She found that, the more she practiced replacing her worries with her sentiments of gratitude, the more natural it became for her to focus on the joys that were right in front of her eyes.

Of course, it’s still healthy to worry about the future at times, and it’s completely fine if you don’t express gratitude every single moment of every single day. But even setting a goal to replace a fearful thought with a thought of gratitude at least once a week is a great place to start. Soon enough, you just may find that appreciating the little moments is no longer a “goal” that you need to intentionally set, but a mindset you live by.

Through all of this, Tara is proud that, even though she and Matt had far different modes of coping, they were able to become even stronger as a couple by working as a team and checking in on one another regularly. She’s also proud of how, even in stressful situations, she was able to remain levelheaded and work through problems one step at a time. She used to think of herself as someone who got frazzled easily, but this experience showed her that she can handle unexpected situations with composure and grace.

As Lyla grows older, Tara hopes people will see her for the multidimensional person she is. Although Lyla is mobile, her gait is visibly atypical, so people feel the tendency to shelter Lyla from engaging in activities, such as walking around the children’s museum. While it may be more difficult for Lyla to do these things, that doesn’t mean she still shouldn’t have the opportunity to experience and enjoy life as much as everybody else—it just might mean adaptations need to be made.

Tara has certainly faced many bumps in the road during her journey of motherhood—first with the traumatic birth of Lyla, then with two subsequent miscarriages, and, after that, with Wyatt having a congenital heart defect. Yet, she has shown herself, time and time again, that her inner strength burns brighter than she could have ever imagined. Some of this inner strength comes from her family, friends, and the fellow HIE parents she has been able to connect with. And some of it comes from finding appreciation and gratitude in the daily trials and tribulations…for living in the present moment, with a smile, has brought Tara so many “cheers.”