Cardigan : Breastmates T-Shirt : My fave AS Colour Custom Mali Pocket Tee Jeans : Levis Demi Curve Watch : Marc by Marc Jacobs Belt : Old Navy Shoes : Sperry Bahama Sparkle Suede Earrings & Necklace : Gifts from Dave’s India Trip Next …
………………and we’re not at Starship, and Nix is not having his op today. Remember in my last post about poop {sorry about all the poop posts, it pretty much rules our lives at the moment!} I mentioned 2-5 massive bouts of diarrhea per day? Well, …
We were in our GP’s office today, and as he turned his monitor around to show me some test results I saw the words in bold, accented in fluorescent yellow; HIRSCHSPRUNGS CONFIRMED.
I already knew this of course. We ‘knew’ a month ago when the surgeon called and said “Nixon has Hirschsprungs Disease”. We knew last Monday after baby’s second round of biopsies failed to show ganglionic cells where they should be in his lower bowel. But I hadn’t seen it in black and white and hence, I don’t really think I had felt it.
So. Nixon has Hirschsprungs Disease.
Basically, Hirschsprungs is a congenital disease (meaning it was present prior to birth) resulting in a lack of nerve cells in some or all of the large intestine. Nerves are essential in causing muscles to relax and contract, so an absence of ganglionic cells results in a large intestine that can’t move waste down the line.
The only fix; surgery.
Many of you have followed my pregnancy and our lives over this past year, you may remember that Nix had a pretty traumatic birth, that even at 10 lb 2 oz / 4.52 kg he was hospitalized with Failure to thrive, he struggled to feed and had a hugely distended belly. But, he did pass meconium after birth. I had never given any thought as to why every medical professional asks the question of every baby, “did they pass meconium?”. I now know that failure to do so is an early indicator of Hirschsprungs.
So Nix flew under the radar for about 4 months until we started experimenting with solids. This became the season of month long stretches between bowel motions. He was never in pain or seemed bothered, but all of the usual remedies failed to help him. The only thing that would get him to poo was a suppository.
Fast forward to today, and my poor baby has chronic diarrhea multiple times each day, between 3 and 5 huge blowouts. I’m about at the end of my rope with exhaustion and worry and his pull-through surgery is scheduled for Monday. This is where they will remove the diseased portion of his large intestine and reconnect the plumbing, hopefully without the need for a colostomy.
Holy shit.
There has definitely been a theme to the shopping I have done so far for Nixon’s first birthday, everything purchased to date has been wooden! Yah, go me, slayer of trees. I find that much like his big bro, plastic ‘baby’ toys don’t really hold …
So we are waiting to be discharged after our third day here at Starship. Yes, it is taking an age, but one of the lovely cleaners figured out that a breastfeeding mummy really needs an armchair in her room and she made it happen. Right …
When I was a little girl our local library had this amazing window set into a concrete pipe that you could curl up in with a book and wile away the time while Mum and Dad took forever picking out their books. I would love to be able to still fit in that window, I would bring a quilt from home and read this book from front to back. Margaret Mahy’s Tale of a Tail {supplied for review by Kiwi Mummy Blogs} is kid-perfection. What else would you expect really from the undisputed Grandmother of children’s fiction?
Published posthumously, Tale of a Tail is a glorious wee novel. One of those magical bedtime tales that you will LOVE reading to your kids, “one more page” requests are guaranteed. Independent readers will also be easily entangled in the whimsy of this short novella, quite Roald Dahl-ish with it’s collection of neighbourhood characters, a splash of magic and wonder and undeniable humour. Be prepared.
Mahy’s fabulous writing brings to life the special powers of a dog with a very strange name, awakening the imagination of Tom who begins to see that “ordinary, everyday things could be just so astonishing if you really thought about them for just a second or two”.
Ethan (9.5yrs, advanced reader) found this book a fun, funny read with very endearing, mysterious characters – especially Mr Mirabilis! Kids 7+ will love listening to this beautiful tale, it rolls off the tongue and into their imaginations with ease. Five stars.
Was going to curl my hair then I thought, why be an overachiever? You have taken a shower today after all.
Nixon’s arrival last year heralded a rather large sea-change in our family, albeit a wonderful one! Things like sleep can no longer be taken for granted so we decided to make what little of it we can get, into good, cozy slumber. That meant upgrading our …
Ahhhh, absence makes the blog stats sadder……..or are your hearts growing fonder? Either way, I’m just about through a jar of Reese’s Pieces {thanks Simone!} and a Canadian Club {thanks Duty Free!} so let’s have a catch up;
Enjoy your day off tomorrow, happy Queens Birthday!
I took Nix to his first party today, his best girl Ayla turned one so baby boy dressed to impress! Country Road Tiny Gingham Shirt Country Road Grey Marle Trackies – Not online Metallic Charcoal MOX Moccasins