28 MarHope for sweet Jonah
Jonah is fragile but so beautiful – we all fell in love instantly when he arrived two weeks ago. He was born prematurely, and has hydrocephalus – excessive fluid in and around his brain. It is also likely that he has some areas of brain tissue missing. Depending on the size and location of the affected areas of brain , this can mean a shortened lifespan – but if this proves true, he deserves to live those days in a peaceful, love-filled environment. And we’ve definitely learnt not to give up hope on any child!
Jonah preferred foetal position when he arrived – as if he knew he should still have been inside his Mama’s warm womb. When Katie gently put him into a warm bath, he relaxed and seemed so much happier. Being immersed in water clearly feels natural to him.
Despite being teeny tiny, he was hungry. For his first feed with us, he drank 30mLs of formula without pausing. Pretty good for such a little boy! He now has a nasogastric tube, so we can keep his calorie intake up even when he gets tired. After a week or so to settle in and establish a care routine, Katie, Criselle and Jonah took the train to Shanghai to see the doctors at Baobei.
The specialist neurosurgeons examined him and suggested a shunt to improve his comfort, and increase his chance of living a longer, healthier life. But there is a catch – Jonah needs to grow a little first. A bit of belly fat is needed to support the shunt, and Jonah doesn’t have much of that yet. So he will be staying on in Shanghai, and hopefully having that shunt inserted and some follow up scans in about a fortnight. We’re hoping that he gains that weight rapidly, and can come home as soon as possible.
So our plan for this treasured boy is to keep loving him and keep hoping. The surgeons have offered no guarantees, but they believe the shunt will be beneficial and may offer hope for a brighter future than we first imagined. We’re encouraged by their hope and adding it to our own. There is something so sweet about this boy – we long to see him growing, learning, smiling and communicating. Can’t you just imagine a big giggle coming from that dear little mouth? We can hear it in our minds, but we’re pretty sure the real thing will be even sweeter.