Our Story
Alex is a premature twin born at 24 weeks gestation during the pandemic of 2020. His twin brother, John, passed away early in their fight. Alex went on an epic 297 day fight for life at several leading children’s hospitals before being cleared for home. As a micro-preemie, Alex was diagnosed with Chronic Lung Disease, Grade 4 Brain Hemorrhage, Leg Amputation to bone infection, Retinopathy of Prematurity, Pulmonary Hypertension, and more.
Pregnancy
Even though we had planned to start IVF treatment that January, a trip to Anguilla for Christmas in 2019 resulted in a spontaneous and natural twin pregnancy. Ahhh the magic of vacation!
In March 2020 the Coronavirus pandemic hit and hospitals went into emergency protocols. During this time the twins were detected as growing small on sonograms, but no cause was ever identified. Genetic testing and amniocentesis did not detect any abnormalities. Looking back, it was a very difficult time to have a medical issue – and we felt those impacts, including never seeing our doctor in person (only on video), and only one parent allowed inside during serious procedures – like amniocentesis of twins.
Between 22 and 24 weeks two fetal echocardiograms detected reversed diastolic flow within the placenta for our Baby A, a sign of imminent trouble. We were told we had a few days to decide to end the pregnancy, or to wait it out before admitting to the hospital for bed rest at 26 weeks.
Pre-Term Birth
The stress of the pandemic and “wait it out” for a failing twin pregnancy was a lot to bear. We decided to get away from it all, and drive to the beach. This was the most relaxing, away from work, away from screens place we could think of – and try to keep those babies at peace. Unfortunately, it was too late. That same night and two days after receiving the news I started to lose the children, or go into labor. It’s not really clear what to call it at 24 weeks. UCSD La Jolla Hospital was 5 minutes away (by design), and we went right away. They put the contraction machine on and listened to the babies heartbeats. Heartbeats ok, no contractions. But a visual inspection found that Baby A’s leg had fallen through the cervix.
Within a few frantic seconds a decision was made to deliver via emergency c-section. No epidural, no time for COVID prepped OR room. There was just no time, as the doctors were doing everything they could to save our two sons.
The babies were successfully delivered, and most importantly – intubated with the smallest breathing tubes the hospital had. Baby A weighed 12 ounces, and Baby B weighed 15 ounces. Two days after naming both the children, Baby B, named John, passed away in the NICU. His brother, our Alex, was right next door, laying in his isolette.
24-40 Weeks
There was barely time to grieve our deceased baby John, because Alex’s fight was just beginning. Within one week of life we had our first medical conference with all of his doctors. We learned that Alex would lose his leg due to his birth injury, and the Grade 4 brain bleed he suffered from being born so early could result in Cerebral Palsy, Developmental Delay, and Epilepsy later in life. Alex survived his first month (24-28 weeks) due to the care and dedication of the team at UCSD La Jolla. They forever have a place in our hearts for not giving up on him.
At 28 weeks Alex was transferred to Rady Children’s Hospital for a through-knee amputation. His leg had started to show signs of bone infection, so it was time to operate. He weighed just 1.3 pounds. After his surgery he improved dramatically, and spent the next four weeks growing and healing at Rady.
At 32 weeks we began discussing with the doctors on how to get Alex closer to home by transferring to a hospital in the Bay Area. The doctors told us he had a long fight ahead, and that being close to home would be better for our mental and physical health. We had been living in short-term vacation rentals throughout San Diego at the peak of both the pandemic lockdown and beach season, and were having to find a new one and move each week. We decided to fly Alex from Rady Children’s Hospital to Stanford Children’s Hospital. The cost was denied by insurance because both have Level 4 NICUs, and after several failed attempts to get them to reconsider, we ultimately paid a significant expense out of pocket for a medical plane. Alex was admitted to Stanford at 34 weeks, while still on a ventilator, and we were home!
From 34 to 40 weeks there were more troubling developments in Alex’s health. We didn’t yet know that some of his biggest fights were to come.
Alex was diagnosed with a very severe form of eye disease (Retinopathy of Prematurity), due to the high levels of oxygen he was getting. The doctors warned us he may go blind.
Alex was also diagnosed with Pulmonary Hypertension and Chronic Lung Disease – as his lungs were truly premature due to his early birth.
One positive was that Alex was successfully extubated from a ventilator, and moved to a CPAP breathing machine.
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40 Weeks to Home
Alex continued on the Cpap breathing machine for three months – September, October, and November. He started Pulmonary Hypertension medicines and things were going OK for a while. Not really getting better, but not getting worse. But then he got two illnesses in the hospital, almost back to back. He became gravely ill, and was put back on a ventilator. Paralytic drugs were used to keep him still, preserving his oxygen for only one thing – which was to survive. There were a few nights where it was unclear if he would make it through the night. His eye disease had also reactivated due to all the oxygen he needed to survive, and putting him at risk for blindness again. We spent Thanksgiving not knowing if there was a future with our son on this Earth.
And somehow he pulled through.
At this point we knew the time had come for Alex to receive a tracheostomy, and start preparing the long line of surgeries he needed to have before he could ever go home.
In his first surgery, he had a Pulmonary Hypertension crisis while under sedation, and it became a life-saving mission to revive him. He did not get his trach. Two weeks of recovery later he went back to surgery for his tracheostomy. Alex spent the month of January getting used to trach life, which was not fun, and included turning blue due to lack of oxygen several times a day and heavy sedation.
Then in February 2021 it was like the sun came out, as Alex just started to get better. He had several more surgeries, each one spaced out by two weeks. A closure of a hole in his heart (PDA), laser eye surgery for his vision, and a G-tube for feeding. Six total surgeries during this hospital stay.
His last big hospital hurdle was to transfer to a ventilator he could use at home. And Mom and Dad prepared the realities of taking a child on life support home.
At Home (1 to 3 Yrs)
On April 1st (no joke!) Alex came home at 10 months old via his ambulance chauffeur, weighing only 11 pounds and with lots of equipment in tow . Alex had two ventilators, oxygen systems, suction machines, nebulizers, a pulse oximeter and backups for anything that could go wrong – including a generator. After just one week at home Alex had an issue that caused his parents to be concerned (crying and turning red), resulting in a panicked ambulance ride back to the hospital. He stayed overnight for monitoring, but thankfully nothing was wrong. Mom and Dad were still adjusting to running a mini-hospital at home and still lots to learn!
But then the sun came out again. Within one month of being home, Alex was able to wean off methadone, ativan, and clonidine – drugs he had been unable to shed in the hospital. He also started to sleep well at night and began to gain weight! He was blossoming and thriving in ways we could not have imagined. However, the seriousness of the fight ahead was not forgotten as caring for a child on life support at your home is a constant challenge.
By the Fall of 2021 Alex was doing well, gaining about a pound of weight per month, and was well cared for by his home nurses and parents. It was now time to start weaning the ventilator!! The weaning process took a long time, but by March 2022 at the age of 21 months, Alex was fully off the ventilator during the day. As soon as the ventilator was disconnected Alex began to sit independently and explore his surroundings.
He also started to get physical and feeding therapies from state services, going once per week. Feeding was a very slow process, as eating was not encouraged while having his trach, for fear of aspiration.
As he became stronger we also started to take Alex on more and more camping trips – he quickly was becoming a little adventurer and loved being outside! We created many wonderful memories as medical campers, using an RV camper van with its own power source that allowed us to bring and plug in all his medical equipment.
