Jesy Nelson has admitted she is “terrified” as her twin daughters prepare for an operation to replace their nasal feeding tubes.
Ocean Jade and Story Monroe, who have spinal muscular atrophy type 1, are due to have their nasogastric tubes removed today (Aug 7).
According to Jesy’s Instagram update, they will instead receive feeding tubes placed directly into their stomachs because the nasal tubes can cause severe trauma to their noses and throats when pulled out.
The girls’ feeding needs have shaped everyday family milestones, including their first feeds in specially designed high chairs.
Jesy Nelson shares fears over twins’ operation
Posting a picture of Ocean and Story lying beside one another under matching blankets, Jesy explained that she was anxious about the procedure but excited to see their faces without tubes and plasters.
She wrote: “Today is the last day of my baby girls having their ng tubes on their faces, as terrified as I am about them having their operation tomorrow I cannot wait to finally see their faces again and see their little dimples that are always hidden under these plasters.”
An NG tube is passed through the nose to provide nutrition, fluids and medication when a baby has difficulty swallowing.
Jesy also described how careful she has had to be while holding her daughters.
She continued: “I’ve honestly forgotten what it feels like to cuddle them and not worry about pulling their tube out of their nose or plasters off their faces. It really is the littlest things we take for granted as parents.”
Jesy shares Ocean and Story with her former partner Zion Foster. She has documented the twins’ health challenges and spoken publicly about their condition.
Alongside sharing updates about their care, Jesy has campaigned for nationwide SMA screening.
Jesy opens up about difficult treatment review
The operation follows a recent three-month review in which doctors found that some of the twins’ results had declined. Jesy said there was now a possibility that they could need further treatment.
She explained: “Unfortunately, some of the numbers have gone down. We had a long discussion and there’s a possibility they may have to go back on treatment, which is just heartbreaking.”
The singer also spoke about trying to balance hope for her daughters’ progress with the uncertainty surrounding their condition.
She added: “I don’t ever want them to feel any less than or feel like it defines them. I really want them to know how special they are.
“I want this to be their little superpower.”
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