Came in early as can’t seem to stay away. Although, I must say, less sleep is beginning to take its toll. Not good at less sleep! Not grumpy particularly but just keep falling asleep inappropriately and I’m forgetful and stupid. Like new motherhood x20.

Rose coughed up her tube again. They tried to put it back and gave up after 3 attempts and put in an oral gastric tube. Oral gastric puts a stop to breast feeding for today though she’s definitely trying to bring her tube up again now as I sit here texting this so fingers crossed…


They missed her weigh in yesterday. I won’t know how much she weighs until tomorrow but I think she’s starting to look like a real baby. The giant 5kg+ baby in the bed next to her doesn’t make her look like a doll so she must be growing well 😉

At rounds they said I could try to BF with the tube. She wasn’t too keen on this. The tube lies over her tongue pushing it back into her mouth so we were unsuccessful. Kei, the neonatologist, assured me some babies do feed successfully with an oral tube in play.

She had an xray to determine position of her feeding tube and ironically her oral gastric tube is in her pyloris 😉

She had her last eye test today. Thank goodness that’s over!! If only we’d known her eyes were fine, she could have been spared!! I WAS tempted to gamble on that one but stakes were too high in the end. Immunisation put off until tomorrow due to eye test today.

I’m summoning up the energy for a bit of a battle.. removing neon lighting from above babies beds. Shouldn’t be allowed surely? Wouldn’t it be immeasurably better if they could have their own bright lamps for procedures and low and/or natural light in day and minimal at night?? I would worry about being one of those annoying parents but I think maybe all NICU parents are so I won’t stand out!

Update: Rose did remove her oral tube. Nurse (Jenny) replaced it with a gastric nasal tube. Yay for tomorrow (hopefully). Background concern.. too many X-rays!! Actually one is too many and daily is horrifying!!

About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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3 Responses to Gutted

  1. ursula garratt says:

    Hang in there Jane darling. You will win over everything just by the force of your mothering instinct and your strength of will. But take time for yourself and the others in your world. You need to build up some reserves while that will-to-live child is in a safe environment.
    Much love. Ursula and Granddad

  2. Lucy Lum says:

    Rose looks so peaceful in this photo. Love and prayers as I am sure you will overcome this hurdle together – you are a “Powerful Pair”! I may not be able to contact for a week or so as we will be travelling in China, but will have internet hopefully when we get to Becky in Tokyo. You will all be in my thoughts and prayers.

  3. Vera champion says:

    Hi jane… just stalking your blog, tearing up as you do!! gosh the memories. in so many ways. breastfeeding. what can i Say? Oh yes I agree about the lighting in nicu!! A more natural day and night would be soooo much better. Love your library idea, lots of mums will appreciate that. I kept to myself so much in hospital, didnt share much , didnt really engage with the other parents. Maybe it was a self protective thing, but when we finally started to do so, it helped immeasurably.

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