Medical Expenses for Meadow Maxine

Our sweet Meadow lost her battle with her  congenital diaphragmatic hernia (CDH) on Sunday, on April 16th, days short of her 2nd birthday, which was on April 19th, 2023 shared with her twin brother Forrest. 

The purpose of this fundraiser is to help the family alleviate the debt incurred in the last two years giving everything they had to save their daughter’s life and to help assist them financially in relocating back to San Francisco Bay Area so dad can provide for family without having to travel back/forth from San Diego and go back to his career as a successful realtor and mom can care for her boys aged 2 (Forrest is special needs) and River (4 years) after losing most everything over the past two years. 

They moved to Florida when mom (a fraternal twin herself) was 34 weeks pregnant to be in the care of world renown Dr Kays, at John Hopkins All Children’s Hospital in St. Petersburg.  

The family originally was located in Oakland, Ca and moved to their hometown San Diego, Ca upon discovering the twin pregnancy to be close to family because doctors new early on at the 9 scan that there was something concerning. At the time, the world was  still in the midst of a global pandemic so everyone was working remotely so it would not affect business production. 

Around 20 weeks when they discovered the hernia, the family was told that it was a minor anatomical condition and could be solved with a simple surgery at birth with a month tops of recovery. 

They did not find out until the 32 week MRI that this was no simple hernia. And if she stayed at Kaiser hospital in San Diego they’d have 5% chance of survival. They initially were referred to Radys Childrens and Childrens Hospital Los Angeles. However both hospitals gave a grim prognosis. They did some research and that’s when they discovered there is one doctor in the world that saves 90-95% of the babies born under his care. 

The family Immediately bought insurance, hopped on a plane and moved to Florida so Dr Kay’s could save her life. The family spent 6 months in St Petes while one parent would stay bedside with meadow and the other with the boys (infant Forrest and 2 year old River), due to COVID rules the majority of the time only one care giver was allowed bedside.

When Meadow was discharged, decided to move to back San Diego instead of to the Bay Area to get help with the twins, even though Real Estate restrictions had started opening up. The idea was that Noah could commute and Leahnora could get help with the twins from family while he was away 

At that time they did not have a clue that Meadow would spend half the time hospitalized or that Forrest would have infantile spasms. So not only were medical bills piling up, but Noah’s business was taking big cuts as he had to refer out business or miss time working due to hospital stays. 

One of the parents always had to be with the boys because of forest seizures. No one was comfortable staying alone with them at the house more than a few hours.

 (story continued below pictures):

 Meadow Maxine, born April 19, 2021, lost her battle with congenital lung disease on Sunday, April 16, 2023, just three days shy of her 2nd birthday. leaving behind a fraternal twin brother Forrest, older brother river, her dad , grandparents, community, and Her Mom, a Fraternal twin herself, (and still best friends with her twin brother to this day, 39 years later).

Sweet Meadow was diagnosed with Congenital Diaphragmatic Hernia (CDH) at her mothers 32-week prenatal MRI and given only 5% chance of survival. This condition causes the stomach, spleen, intestines and liver to migrate into the chest cavity, causing the lungs to grow to about only 30% of their expected size. It was at this time they also discovered her twin brother had some brain abnormalities and prognosis was uncertain. After the devastating news, only 6 weeks before their due date, the family sought help from the very best CDH lung doctor in the world - Dr. David Kays at John Hopkins Hospital in St Petersburg Florida. The medical staff was also highly educated in dealing with critical conditions such as dandy Walker Syndrome, which at the time was the expected cause of Forrests ultra sound abnormalities. 

The family was informed that he may be mentally impaired and/or unable to walk (that’s a whole other story but obviously his needs had an impact on the family ecosystem). After one single phone call, without an exam or history review, Dr Kay’s told the family he could increase Meadow's survival rate from 5% to 95%. 

Without hesitation, at 34 weeks pregnant, the family packed up and moved from California to Florida and two weeks later at 36 weeks, on April 19th, 2021 the twins were born and the crazy journey began. From mom: Dr. Kays, Dr. Smithers, Dr Stone and his brilliant and masterful team of nurses respiratory therapist, psychologist, social workers, immunologist, neurosurgeons, geneticist, his right hand main nurse/assistant Joy performed 5 different surgeries and with hyper vigilance monitored Meadow for six months with a precision and meticulousness they’d previously only seen in the movies. She was intubated for the first 6 weeks of her life and mom held her for the first time when she was 7 weeks old. The family credits him with performing a miracle and giving them the almost two years that they had with Meadow. 

The family spent long days in the hospital with Forrest spending hours in a stroller or baby carrier and mom by bedside. Parents alternating their time between their AirBnB with their at the time 2 year old and the twins with no community or family nearby to help. It was grueling and exhausting and nearly impossible to manage logistically, especially with COVID restrictions. 

They lived in Airbnbs, various Hotels, Ronald McDonald when there was room. Patience grew thin and Money thinner as the months crawled past and the discharge date continued to be pushed out. Because of the uncertainty of her health, It was hard to stick with affordable accommodations. At one point they were able to spend two weeks for free at the Ronald McDonald house but after they found out River was in preschool (they eventually enrolled him bc dad needed to work and mom needed to be with twins), they were no longer eligible to stay there because of super rigid COVID restrictions.

Somehow Meadow made it and was discharged six months later and the family moved back to California in September 2021. Not long after, Meadow was admitted to a local children’s hospital for pneumonia and had to be re-intubated and put in isolation due to COVID positive. At one point, Only one parent was allowed in the room and was not permitted to leave the 10x10 room for 12 days. 

Unfortunately, this wasn't the last time that Meadow was hospitalized despite the local case team’s vigilant monitoring, continuous oxygen, gtube and numerous medical interventions. She would go on to have a total of 10 hospitalize stays each lasting 2-6 weeks long. Her mom became her full time nurse at home while caring for the two boys often for weeks alone at a time while dad was working back in Oakland. 

Not only was the family dealing with Meadow's lung issues, but her twin brother Forrest began experiencing seizures. Forrest had to complete multiple rounds of expensive and invasive treatment, for a period of time he even needed injections of Acthar gel into his legs; which towards the end of treatment were covered in bruises. This was when they learned that out pocket maxs aren’t black and white. Lots of Forrest and meadows care wasn’t “covered” and did not count towards out of pocket max so unknowingly took on more debt. 

Both twins were on platinum insurance which ran $3500 a month for the Florida plan. They chose this plan bc they knew she’d meet the max early on. 

Also, even though out of pocket max was met for meadow while they were in Florida, due to our moving out of state to California, unfortunately lots of treatments weren’t approved and excluded from maximums due to “travel clause”. 

 The family also had to keep the Florida insurance while in California so they could Continue to receive important medical care from afar and have certain supplies sent monthly across the country. Also, Meadow would need to have another surgery to switch the gtube type because they use different styles in Florida than California. At the time Meadow was too fragile to go through another surgery. 

Things got so complex and unmanageable that some bills went unpaid and often they went months without car insurance to insure at least the health bills were covered. At the time, the family was just doing what they could to keep the kids alive and healthy. Rising costs of living plus all the medical costs and time off work due to hospital stays, the family depleted over 100k in savings and eventually took out loans. 

During this time they rarely left the house unless it was for doctors Appts or necessary life activities. If meadow caught a common cold that could mean another month in the PICU. Before the twins were born, dad was a successful realtor and mom a relationship coach; both independent contractors that need to work to have money. The family was comfortably making six figures and lived a happy , healthy lifestyle, going on summer vacations, picnics at the park, hiking, concerts, etc. 

Since the twins were born, we watched mom and dads health slowly deteriorate as the twins endured over 12 hospitalizations (each 2-6 weeks long on average, the longest was 6 months). Things got so bad towards the end that the family was their groceries from food banks in order to save every penny to pay the monthly health insurance premium, housing, phone, and preschool , diapers, gas, co pays for meds, formula, etc etc and applied for public assistance 3 times (originally denied because reported income level, however all expenses exceeded income at some point. 

Yet, they kept fighting, determined to make sure Meadow and Forrests health came first. All in all, they owe around $200k in bills (not including housing or anything with equity). The family has been able to set up some payment plans for taxes and loans and some other expenses such as gas/electric. 

Starting January 2023 going forward meadow finally got accepted into an program That would cover whatever insurance wouldn’t cover so that was a blessing, and in February  got approved to get a monthly stipend to be an in home care provider (as long as she’s not in the hospital. No stipend during hospitalizations which meant no stipend for all of January and half of February). (Obviously the stipend is no longer available.) Dad moved up to Oakland to start Working after Meadows Discharge in March and signed with a new agency and things were stabilizing. Family felt they had turned a corner. 

TRIGGER WARNING

 

And then, every parents worst nightmare came true… (From mom):

“ I was home alone with the boys because dad was working in Oakland. He had rented a place up there temporarily so he could get the real estate business going again with no distractions. I assured him that I was good on the home front and worst case he could hop on a short flight. Saturday night before bed I cuddled her, which is unusual. Usually she fusses after “care” time (changing her dressings, cleaning stoma, retape oxygen, wiping down her body with a wet cloth (she could get real musty and sweaty) and brushed her teeth and fixed her hair, administer meds, set up new food bag prime Pump, fresh sheet, blah blah the endless care …etc etc I came in and checked on her at 5am to turn off her feeding pump as I do every morning.

 She was asleep, peacefully, her oxygen plugged in as usual. I came back at 7:45am to wake her. I was surprised bc she is usually squawking like a parrot…but when I walked in she wasn’t stirring per usual, and she lying face down, head down too (not turned to side like it is when she sleeps prone). I immediately called 911 and started CPR and asked my son to call grandma to come over to fire department arrived minutes I have been compressing her chest so hard that her gbutton popped out. 

What hurts me? Thinking about this I had woken up her first instead of the boys. Maybe she would still be here. Also, no that she was a sick baby and was probably ready to go. There were no signs of infection. She was just tired. As hard as it is, I trust in Gods will. And thy will be done. Sweet girl always be mine angel.”

This family has done the miraculous by helping their kids receive care amongst all odds, and never asked for financial help or assistance until now.