Showing posts with label Palate repair. Show all posts
Showing posts with label Palate repair. Show all posts

27 June 2010

Debrief

Monday saw our little one's palate repair. She was on morphine afterward so everything was a bit of an effort. Pesky things like breathing and staying awake were all too hard to bother with. 

She had a moderate amount of bleeding too, but nothing too bad. 

All but one of the registrars changed over since her last procedure. One of the new ones is fantastic and from a parent's perspective I see a good future for him. He cuddled H a couple of times and engaged with her. He also did all the right things with me like introducing himself and answering questions thoroughly. The new woman however has a little further to go..

The NUM was fantastic and very available with his office door, which is in the main corridor usually open. As usual the nurses were wonderful. They really are angels. 

Another thing I appreciated about the visit was that the anaesthetist recognised that H was unsettled before her op so asked me to accompany her into theatre. This is not something they routinely do with babies under the age of 1. It was good to see for myself that within seconds of getting into theatre she was asleep and ready to go and the volunteer explained to me that having me there, H took deeper breaths than she would have if she were even more unsettled.

Things were pretty heavy on the ward. Last time she was in there were lots of misadventure by otherwise healthy kids leading to a night's stay and tonsillectomies. This time there were quite a few regulars and new babies with a long road ahead.


Feeding has been an absolute bitch. Usually H feeds herself and takes her own bottle. Maybe once a day I can give her a cuddle while she drinks her milk. As you can imagine, going from being able to feed yourself to wearing arm splints and not being able to suck or eat is no fun.  I had a big teary one day after she vomited a whole feed when I gave her panadol. I got the head tilt and "would you like a break" from the nurse.  I chose to grab a blanket and cuddle up for a nap with my sweety which was a much better choice for us.

The speech therapist from the hospital and our CleftPALS contact have both given me many, many suggestions. Something that works for one feed often does not follow on to the next. Our biggest success has been mashed potato and pumpkin with her milk poured down the side. Each mouthful is mainly milk and a bit of mash. So 2.5ml at a time we are slowly, messily getting the food in.


She has found a new passion this week, drawing. Big sisters use whiteboard markers on the fridge and she has a go at every chance she can get.


So now we are on to the school holidays. All three girls have colds so we are keeping close to home while they get well. Stopping and appreciating simple things like a cubby in the backyard is probably just what they need right now. A nice way to finish a big week.



One last thing on an already long (for me) post, where were we when we heard about our first woman PM? Awaiting discharge from the hospy sitting at her bed. Everyone else in the room had their TV on and another family had to tell me what was going on. That explained why I could not find ABC kids earlier while flipping through the channels.

17 June 2010

Sign baby



H's Speech Therapist suggested introducing some signs to help her on the way to speaking. I think even after palate repair it will be good while she works out what to do with all the new sounds she will (hopefully!!) be able to make. I have been making the sign for milk with her over the last couple of weeks as well as singing songs with gestures like Twinkle Twinkle and Open Shut Them.

I found little gem at the ABC shop yesterday and have already mentioned it to a couple of Mums who have children with delayed speech or hearing issues so I thought I might as well post about it here. Gorgeous Sofya from Play School teaches AUSLAN with interviews from parents and great tips to help making signing with babies / toddlers a success. On top of that, there are some nursery rhymes to sign and sing along to.

Just a few days till her op now. Last time around it consumed almost all my thoughts, but this time it is not quite as intense. I have dropped trying to get her to practice with her post op teats as it was just leading to tears- hers as well as mine!! We WILL get there.

Rated: E (exempt from classification)
Released: 2009 

ISBN / Catalogue Number: 0760680

11 June 2010

Nine months


Nine months ago the sweet girl beside me was a tiny little baby less than 24 hours old. She was drinking mls of colostrum through a syringe while sucking on a finger. Now she wants to hold her very own bottle. (still my
milk- Hooray!!)

Less than two weeks until her palate repair and I am feeling those same things again. Some of the unknown has been removed and I know full well that her recovery will be horrible and sad and overwhelming for both her and me. She is still refusing to use appropriate teats for post op and I fear that things are going to be even worse in the feeding department than after her lip repair.

For now though, here's to a my sweet, tenacious, funny, joyous 9 month old.