The smallest of things
One family's journey through the impossible, and where they are now
By Miriam Orr
"Hey, now you've got sticky sucker juice all over in my hair, kiddo," Rachel Vetsch smiles brightly and can't contain her giggle, while her soon-to-be-four-year-old son, Eli, is busy watching television over her shoulder, managing to simultaneously give her a hug.
A lollipop has stained Eli Vetsch's mouth green, as he runs around in pajamas, while a quiet episode of "P.J. Mask" plays on the living room television.
Eli is excited about his upcoming birthday, where he will turn four, because "Now I'm this many and will be this many more!" He attempts to hold up three, and then four, sticky fingers.
However colorful Eli's mouth may be from his sucker, he makes sure he's quiet as he enters the living room with his mother, because in the corner beneath a picture window, his baby sister sleeps quietly.
That little girl is one Avalynn "Ava" Vetsch, and her story is almost as colorful as her big brother.
Meet the family
The Vetsch family makes their home a few miles out of Buffalo, on a beautiful hill overlooking pastures and trees. It is quiet, and has a perfect view of the sky, with tons of room for three kids to run around, grow, and explore smalltown Minnesota country life.
So is the dream of Andrew and Rachel Vetsch, who spent three years looking for this "dream home" on the outskirts of Buffalo. The couple left Brooklyn Park after spending seven years in the metro area, where their two oldest children, Lilliana, who's five, and Eli, who's almost four, were born. Their youngest daughter, Ava, was born while they were living in Buffalo, just over a year ago.
Rachel is a full-time, stay-at-home mom, while Andrew just recently left the restaurant industry in Delano to stay home and be closer to his family. Most days, the couple welcome grandparents to stay over the day as well. Their house is a busy one, to be certain.
It's busy in a way they never imagined – a miraculous busy, you could say.
Ava Vetsch just turned one in February, where her birthday was celebrated by not only her family, but also hospital staff in Buffalo, where nurses, doctors, and paramedics gathered to meet her and her loved ones. Rachel and Andrew, Ava's loving and devoted parents, shook hands with the very men and women who had a large part of bringing Ava into this world.
The idea of a birthday party with hospital staff is one you wouldn't typically imagine for a one-year-old. But, for Ava, it is very fitting and also very special for her parents.
The day Ava was born was one that they wouldn't soon forget.
"I was scheduled for a C-section Feb. 21st," Rachel recalls of her third pregnancy. "It was the night of Feb. 20th. We'd just brought food home for the kids, and I had gone to the bathroom and had some chest pain."
However, when Rachel exited the restroom, she didn't feel well at all. Andrew asked her what was wrong, and she didn't respond to his inquiry.
"I knew something was wrong when she bypassed all the food we'd just brought home," Andrew said. "She sat down on the couch, and I asked her again. She didn't respond."
Moments later would set the course for the rest of the couple's life. Rachel went into a sudden cardiac arrest, where she was totally unresponsive, and collapsed on the floor.
Luckily, however, Maple Lake and Buffalo paramedics had gathered together for a meeting at the ambulance bay in town, and responded to Andrew's call faster than normal.
"It was a miracle they arrived so quickly," Rachel recalled. "Had they not been together for a meeting, it would've taken like seven minutes longer than usual. Those seven minutes would've cost me and Ava's life."
Rachel stopped breathing right as paramedics arrived at the family's home, where they performed CPR to resuscitate her and keep her unborn child alive. She was immediately transported to the hospital, and eventually ended up at HCMC in Minneapolis.
"They performed an emergency C-section to make sure they stabilized Ava, since she'd gone without oxygen already," Rachel said. "Even then, though, the doctor told Andrew that it didn't look good for either one of us. They were positive that I would have severe brain damage or die altogether. No one expected either of us to live."
It would be four days before Rachel would meet her third baby, who was routed to Children's Hospital while she remained at HCMC. Doctors had told Andrew that his wife was either going to die, or end up severely handicapped – only to be proven completely wrong.
Rachel woke up four days later, entirely fine. At first there was temporary amnesia and a slight lack of depth perception in the weeks to follow her recovery, but she was entirely fine out of a medically-induced coma. That in and of itself was a miracle.
"They told us, after I woke up, that Ava had extensive brain damage from the lack of oxygen," Rachel explained, "to the point where they didn't think she would even breathe on her own."
"We were literally arranging her last rites and a baptism and a funeral service," Andrew said.
But then, Ava woke up.
"It was so hard not knowing what was going to happen," Rachel mused. "We had no idea when we were ever going to leave the hospital."
Ava spent almost 25 full days in the Neonatal Intensive Care Unit at Children's Hospital, where her big brother and sister saw her once. Rachel and Andrew stayed in the Ronald McDonald house for awhile, as their daughter recovered from her entrance into the world – coming home only to shower, change clothes, and go back again.
Ava was diagnosed immediately with Hypoxic Ischemic Encephalopathy (HIE), or brain damage that occurs when an infant's brain is deprived of oxygen and blood. Though Ava was diagnosed, doctors were unsure of how long she was compromised in the womb during Rachel's cardiac arrest, and thus could not have determined the severity, other than it was "extensive." She was also diagnosed with cerebral palsy, which is "more a classification than a medical diagnoses," Andrew commented.
In addition to cerebral palsy and HIE, Ava also suffers from Cortical Vision Impairment, (CVI), which is more of a psychological issue than a visionary one. Basically, Ava can see visually – her brain just has a difficult time processesing what her eyes see. To what extent she can actually see remains unknown, as she's only a one-year-old. What's more, Ava has microcephaly, where her head is significantly smaller than expected, since her brain is not developing like normal infants.
"We take things one day at a time." Rachel said. "We're happy about every little thing – since doctors have no idea what she's capable of or even how long she'll live, we rejoice in the smallest of things."
Ava struggles with movement and mobility, as her brain stem has damage. Since the brain stem controls the functions of life, Ava was never expected to do anything on her own at all. Breathing on her own is a miracle in and of itself. March 7 marked the end of a weeks-long battle in a hip-to-foot cast due to hip displacement from the cerebral palsy.
Feeding is a challenge, as Ava is currently fed through a feeding tube, though doctors believe that her eating habits stem more from psychological issues than they do physical ones.
As for her cognitive awareness, Ava knows who her family is, and absolutely loves certain toys that she plays with, even though she struggles with loud noises and cannot be moved around too quickly.
As for Eli and Lilliana, they are all too thrilled about having a baby sister. "Even though they don't quite understand, they do so great with her," Rachel said.
Motherhood after having two children has been quite different, Rachel hinted. "I've learned to live in the moment with Ava, and I'm thrilled about everything. In a way, I'm thankful that we almost died – it's made me so aware and thankful for life. I'm so blessed we made it, and we are here."
Rachel stated that she has less anxiety now, after the cardiac arrest. "Nothing is a huge deal anymore. We can get through everything. It's a really strange feeling; nothing really compares to what I've gone through, and I've learned to embrace everything."
Joy in the simplest things
"The biggest challenge for me is not knowing," Rachel commented. "I just don't know what's going to happen today, or tomorrow, or three years from now, or whatever. I just want Ava to be happy, and that's what I hope for everyday."
It was nine months before Ava could smile, and that was the greatest moment for Andrew and Rachel. "All along we've wanted her to be happy; that's what I want," said Andrew. "I want her life to be as good and happy and positive as possible."
Now that Ava can smile, it makes it all worth it. Rachel and Andrew were beaming when they explained that since Ava didn't smile for nine months after she was born, they were worried that she had never experienced happiness. Now that she smiles, they take solace in knowing that even the smallest things are the most rewarding.
"Any developments that are positive are huge and big and exciting," Andrew explained. "Our fear is that she'll never be happy, so we make everything a huge deal, and we're sure to be happy about whatever positive thing happens in the day."
"She was just pushing her leg a little the other day when she had the hip-to-foot cast removed," Rachel remembered. "I couldn't contain myself. I was so happy and giddy, because she hadn't moved in weeks, and that was such a promising sign."
Rachel then went on to explain that in January, she went in for surgery on her heart. After she was diagnosed with a heart murmur during her first pregnancy with Lilliana, her oldest, she hadn't really anticipated anything huge, until the cardiac arrest with Ava happened. She was diagnosed with Mitral valve prolapse, where the leaflets of the heart's mitral valve bulges into the heart's left upper chamber like a parachute during the heart's contraction, according to the Mayo Clinic.
"As soon as they closed me back up from surgery, and not even before we hit the ICU doors, I had two more massive cardiac arrests," Rachel recalled. "When they did my surgery, they rated my heart a five on a scale of one being the best to five being the worst."
Doctors ascertained that when they corrected the leaflets on Rachel's heart, the repair "threw off the accustomed rhythm" that her heart was "comfortable with," and that's what triggered the two cardiac arrests.
After surgery, and work on her valves, Rachel's heart went from a beyond five classification to a one. She spent five days in a medically-induced coma after her surgery in January, only to come out just as fine as she went in – only now, she doesn't anticipate any heart surgeries in the future.
Life in the moment
"We are so happy to be able to finally sit back and begin exploring options," Andrew said. He's been busy accumulating materials regarding Ava's conditions to begin studying and exploring options – whether those be experimental medications, operations, or other avenues of treatment, the family isn't entirely sure.
"For so long, we've been reacting to all sorts of things, that we can just now sit back and begin really looking at different options for treatment and where exactly we can go. That's what we've been waiting for; it's been so reactionary."
Recently, Ava was diagnosed with infantile spasms, which are like seizures, that by definition are a "catastrophic disorder." Now with that somewhat under control, the family has been enjoying time at home in the wake of Ava's first birthday.
Life continues for the Vetsch family, however. Lilliana is five and is in school, which is a big step for Rachel and Andrew, and Eli is enjoying his time "almost being four." Ava has almost eight appointments a week in Minneapolis, so Rachel has a jumping schedule that keeps her on her toes.
Thankfully, grandma is always nearby, should Eli have a hankering for green suckers or adventures outside.
For now, Andrew and Rachel state that they are working towards the challenges of mobility and eating at the moment; though they are sure that each day presents its own set of challenges and joys.
They remain optimistic though, and don't miss a beat. They are smiling and taking this journey together, even in the smallest of things.
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