OUR BELOVED
Tristan (Peanut)
Tristan was born September 1st 2021 weighing near 10 pounds a seemingly healthy baby despite the few complications during birth and an emergency c-section. Tristan was diagnosed a month later with a rare incurable type of severe epilepsy called Early infantile Epileptic Encephalopathy (Ohtahara syndrome).
CHUM postpartum
39 weeks pregnant with big peanut
Diagnosis took a long time, as parents we knew something wasn't quite right postpartum at the CHUM. Tristan was very sleepy and never woke up when hungry. He also had a strange spasm upon waking up. The CHUM kept us a prolonged amount of time to make sure he was drinking enough before releasing us. We went home after a 5-day stay at the CHUM and immediately decided to go back since he was extremely lethargic.
CHUM NICU
We were admitted to the neonatal intensive care unit. The paediatrician suspected meningitis given the infection mom had during birth. After a 3-day stay at the neonatal unit with a round of antibiotics, it was determined that Tristan was not suffering from meningitis. We expressed our concern with the paediatrician that something was still not quite right and given he knew parents' gut feeling is often right, he transferred us to Saint-Justine for Tristan to be evaluated by a neurologist.
After a 2-day stay at Saint-Justine, Tristan was diagnosed with neurological immaturity. His cerebral MRI was ok and his Electroencephalogram (EEG) led to the diagnosis at the time which was not worrisome. We were somewhat relieved and went back home where we spent quality time with Peanut.
Tristan back home in Montreal
After about 3 weeks, Tristan's spasms started to look like seizures so we called Ste-Justine where we were admitted at the Emergency Oct. 1st and thereafter transferred to the Observation unit. That is when we got the shocking news that Tristan's EEG revealed something severe and that he would not lead a "normal" life.
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Ste-Justine unité pédiatrique - thank you to the staff letting us leave the room to take walks around the hospital
Ste-Justine unité pédiatrique
Tristan stayed close to a month at Ste-Justine as the neurology and genetics teams tried to help him. Unfortunately the diagnosis was dire, Tristan's painful epileptic tonic convulsions were the result of an incurable disease and anti-epileptic medicine did not help reduce his seizures. Given most of Tristan's short life was spent at the hospital, we decided to go back home and administer Tristan's medicine ourselves.
Tristan's paternal grandparents opened their hearts and their home for Tristan to be taken care of fully. The prognostic of Tristan's disease is horrible so we made sure to give him the best baby life possible despite the mental and physical pain he suffers during his tonic seizures amounting to 200 a day.
Tristan back home once again but now in his new loving home in Brossard
Tristan loves being held by his loved ones all the time, walks & car rides (especially when it's a bumpy ride), bottle time (especially making us laugh with his tavern burps), sporting the cool PJs auntie gets him, sleeping with us & spa time! ​
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Yay biberon time!
sound ON
Yay spa time!
Yay rides! (boo winter wear)
Yay outfits!
Yay sleeping!
As mentioned, our time with Tristan is limited (a matter of weeks) so we are spending precious last moments with him. Saying goodbye to our beloved baby boy is the hardest thing a parent can do. We are filled with sadness but Peanut has brought us so much joy and has taught us so much during his short stay on Earth with us. We will continue to live in the present, live simply & enjoy the small things the day brings, spend quality time with loved ones, show compassion & empathy to others suffering and help them as much as we can. This painful journey has brought us closer together and led us to a more purposeful existence away from everyday distractions.
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Volunteers at Ste-Justine held Tristan at night when we had to go home to get a few hours of sleep and so many amazing people reached out to help us. We didn't ask and they didn't ask us what they can do, they just took action - we are immensely grateful.
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Update: Our beloved Tristan passed away Jan. 16 at 20:15 at Ste-Justine in his parents' loving arms. "Tu n'es plus là où tu étais, mais tu es partout là où je suis" - we love you always Peanut.