A Tiny Heart, A Courageous Fight: Please Help Baby Arlow

About Our Brave Girl

Many of you know that Arlow was born to my daughter and son-in-law Grace Birdseye and Alex Saxe on October 22. She was born just a little bit early, but generally seemed okay, so she went home a couple of days later to meet her big sister Aurora, who is all of two years old.

Hospital Stay #1: A Tale of Three Cities

Over the next couple of weeks, though, Arlow's parents noticed that the jaundice wasn't clearing, she wasn't gaining weight, was struggling with feeding and breathing funny, so after multiple failed attempts to get the attention of nearby medical providers, Grace

went to Arlow's birth hospital/clinic an hour away and literally begged for help because she knew her baby was in trouble. After a doctor listened to her heart, Arlow was admitted and within six hours was being transported by ambulance another hour away to Children's NICU. Family mobilized to stay with Aurora so Alex could get to there in time to follow the ambulance to Children's, to support the parents at the hospital, and to provide for Aurora's care at home. After a week-long hospital stay, Arlow was able to return home.

Understanding Arlow's Heart

At the NICU, it was discovered that Arlow has not one, but two, fairly large holes (VSD and ASD) in her heart, and as a result, her heart was twice its normal size and her lungs were filled with fluid. Arlow's heart was working against her and she was literally wearing herself out after only a few minutes of eating.

An extensive feeding and medication protocol was established, which resulted in her mother needing to breastfeed, then pump, while dad bottle fed with fortified breast milk every three hours 24/7, leaving 60-90 minutes downtime between each feeding. We bought a mini fridge for the second floor after the first night home found Dad running down to the kitchen and back up the stairs in the dark several times a night, often while carrying an exhausted but wide-awake toddler.

At the cardiology follow-up a week later, the cardiologist met with the exhausted parents, noted that Arlow was not making gains despite the parents' herculean efforts, and recommended readmission to the NICU. Over the course of that next weekend, her parents coordinated with Children's Hospital staff to plan for readmission.

Hospital Stay #2: Holidays at the Hospital

On November 25, Arlow was admitted to the cardiac critical care unit at Children's for what was expected to be 2-3 days but has now stretched into weeks. Grace is staying at Children's with Arlow, while Alex is back home an hour away with Aurora. Arlow is still struggling with feeding and weight gain and doctors believe that she will need open heart surgery soon.

Alex's coworkers so very generously donated enough time to extend his two week paternity leave into six weeks, but that ends this week. Nana will take some time off work to care for Aurora during the day until Arlow is well enough to come home.

The Road Ahead

When Arlow is discharged from Children's, she will be sent home with an NG tube, which will require her parents to add a level of expertise and care to the already extensive feeding protocol. Doctors expect that Arlow's feeding issues will worsen as she grows larger and her lungs begin to expand. She will need to monitored at Children's every other week to make sure that her lungs continue to stay clear and her heart does not become enlarged again. This will require two hours of travel each trip.

Open heart surgery to correct the holes is anticipated in January, 2025, and Arlow will need to stay at the hospital for at least six days, with recovery expected to take six to eight weeks. After surgery, Arlow will continue to need monitoring and ongoing assessments to determine whether her genetic condition will affect her health in other ways.

It Takes a Village

Arlow's birth came at the perfect time, but the medical crisis came at the worst. After searching for two years, Grace and Alex bought their first house in August, in time to bring their new baby home. But their new home is across the state line in Minnesota, so their medical insurance plan changed, mid-pregnancy, just after they had met the high deductible on the first one. They have now met two high deductibles in 2024 while juggling larger housing expenses, with more medical bills and related expenses to come. Grace had been planning to start a part-time job as a parent educator in January, but with Arlow's high needs, it is quite possible that she won't be able to contribute to the family income for many months.

The kids won't ask for hand-outs and aren't asking now. Their focus is on their family and community. They volunteer, contribute, and donate, always in service to their community. Grace actually managed to donate blood this week while at Children's, something she ALWAYS does on her birthday and then as often in between as possible. They are intent on raising strong, resilient, community-focused children, and if little Aurora is any indication, both girls will grow up to be amazing people just like their parents. I am so proud of them.

SO many kind and generous people have reached out to offer help, and many have asked about a GoFundMe. Grace and Alex are terrible at asking for help, usually choosing the stoic go-it-on-your-own Midwestern strategy, but this is BIG. Bigger than two hard-working, conscientious and highly competent parents and their extended families can handle. Bigger than anyone could have planned for. This beautiful little family needs help and this Nana hopes that we can help smooth the way for them so that they can focus on loving and caring for their sweet little girls.