I was somewhat disappointed to find that there aren’t really any Glow/<a href="https://play.google.com/store/apps/details?id=com.glow.android.nurture">Nurture</a> groups for parents of medical kiddos. It’s tough at times, and terrifying, when you don’t get the healthy baby you hoped for. Maybe there is such a group and I am just not finding it?

My 2 month old has an extremely rare chromosome disorder (a large micro-deletion on chromosome 1p). Due to her missing a portion of her genetic code, she has quite a laundry list of congenital abnormalities. We spent the first 40 days of her life in a Children’s hospital and since discharge she sees a paediatrician weekly, and has many follow up appointments with her team of half a dozen specialists (cardiology, neurology, genetics, etc). She currently gets fed through a tube down her nose, but we are working on her bottle skills with 3 different speech-language pathologists.

My husband and I both learned how to put her NG tube in, and usually it gets changed every 2 weeks under the supervision of our home care nurses. However we are visiting my parents for the long weekend and yesterday morning it got yanked out somehow 😬 Fortunately we bring our supplies everywhere to put it back in, because otherwise she can’t be fed. Well it’s always gone smoothly with the nurses, but of course by ourselves it was a nightmare. My poor baby girl, it took me 4 attempts to get it placed properly (I’m pretty sure I even poked it into her lungs accidentally once) and she was so upset. I’m still traumatized today, even though she settled quickly after, and within 10 minutes was sleeping in her dads arms while being fed.

I don’t have many people to talk to about the struggles of caring for her. I do belong to a few FB groups for parents, but I don’t want to flood them with posts, so I think I might write on a blog instead and share it selectively (I used to write for income and I have some .com websites I’m paying for and not using so it will be easy to get started).

Anyway, if anyone here has a little one with medical challenges, I would love to hear your stories. I know we all like to talk about our kids, but sometimes it’s difficult when they are “different”. I don’t share a ton of details about baby Lagertha on FB because I don’t like all the questions people ask, or when people are in denial about her situation (like my parents firmly believe she will outgrow her vision/hearing issues 🙄 or that she will miraculously develop olfactory bulbs even though she doesn’t have any).

I just wanted to create a little safe space to discuss some of the challenges of having medically complex children. It can be a lonely road and there seems to be a lot of pressure to be ever-optimistic.

Baby L @ 2 months old, with her Beads of Courage

UPDATE

I figured out how to create a group. It’s called Parents of Medically Complex Children but friends and family of said children are more than welcome.