What to think and how to feel?

I’ve spent the last week or so trying to keep up with Rose’s progress and how I feel about it and what it means and trying to keep on top of my hope reflex.

It is strange going from 6 months of people avoiding the H word to it being uttered in every sentence. There has been a constant stream of specialists and administrators past Rose’s bed today preparing us for the likelihood of going home this week.

Home sounds like the fulfillment of a dream if you don’t listen too hard to the background noise… the end of Rose’s journey… a chance to be normal… but it isn’t really any of those things. It means that she’s safer than she’s ever been, bigger, able to be fed outside hospital. All these things are GOOD but there was a time not so long ago that I believed home would mean a well baby and my mind still goes there occasionally… it’s not a place my body will ever arrive though!

Home also means rushed trips to emergency, shoving tubes into her gastrostomy hole if it pops out, endless specialist appointments, endless medical EXPENSES, stress while I try to juggle the needs of the boys with Rose’s medical requirements, discomfort when we come up against strangers expectations of how a baby should be, anxiety about whether I’m doing the right things, whether she’s safe, will stop breathing and of course a whole raft of things we won’t know are in ahead of us until we encounter them.

Home means we’ll see most of you a whole lot more and that Rose will have a chance to be a part of her family and her community!

Home means for a while at least we have a break from people telling us what to do, from having to ask for permission to do the most basic things, from walking away from Rose’s bed and coming back to see someone prodding her awake for some necessary test or other. I’ll no longer be woken up (as I was last night) at 12, 1 and 3 for a new admission to our room or a crying baby who makes me just want to scoop them up and cuddle them to sleep.

I think the thing I’m looking forward to most is being in the same country as Andrew and the comfort all our children will have in seeing both their parents together in the same place. Of course this could be short-lived when they realise how much less they’ll get away with!

I’m not scared to take Rose home exactly… I’m scared to hope that home means a bit more than this I guess… that it means the worst is over and not that the worst is yet to come… I guess no one can ever know THAT about anything.

One thing that HAS become obvious being in the Children’s Hospital with our fellow weary travelers and something that we remind ourselves often is that you really must enjoy each and every moment, every smile, every milestone reached, every time you smell your baby’s head, kiss their cheeks, hear them laugh, every time they look at you like you’re their person. All babies make their parents’ souls sing with happiness, sick babies no more or less than well babies but for us we need to cling to that feeling otherwise this place is IMPOSSIBLE to make any sense of… this suffering that we’re doing, witnessing and surviving would just not be worth it if we weren’t LOVING 100s of little moments of every day after all who knows what tomorrow will bring?

The hospital seems to be planning for us to go home this Thursday or Friday all going well. Rose’s gastrostomy is looking good, we’re moving from 8 to 7 feeds per day so that Rose has a 6 hour stretch between 12am and 6am that she’s not fed. Her home C-PAP machine is all hired and we’ve applied for her own. She’s having all sorts of tests for home and we’re being given lots of training (CPR, Equipment maintenance, emergency P.E.G. replacement) and lots of follow up appointments.

A huge issue that’s preoccupying me at the moment is food… she now eats almost twice as much as I manage to express each day which is great for her but I’m finding it difficult to contemplate formula… because I’m me and accepting would just be too easy I guess ;-)… so I’ve been stalking the Human Milk for Human Babies facebook group and building up the courage to use donor milk… there are associated risks but it still feels better. My generous sister (I’ve a draft post pending on Rose’s new cousin), Kate is also trying to express for Rose which would be such an incredible gift and really is the ideal though the freight costs from Perth may be a little extreme!

Another possibility is that Rose could start breastfeeding again. She has started allowing milk and nipples in her mouth but not latching yet. It’s a huge step and I’m practicing extreme patience. The first time she did it I can not describe the sense of relief and wonder that flooded my body.



So. Looks like all going well in next few days I’ll be coming home and going about my life generally with

my arms full

and that will be, without a shadow of a doubt, something to celebrate!


About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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10 Responses to What to think and how to feel?

  1. Jill says:

    What a wonder if you can all be back in the one house together and even more amazing if Rose could learn to feed.
    Sending you love and hugs.
    Jill xxxx

  2. Maira Widholzer says:

    You are amazing! Keep positive, home is on the horizon so that is promised land for sure! ox m

  3. Louise Walker says:

    Jane I’m so delighted that you and Rose are coming home. I keep thinking of the book you gave me when Isla was born ‘what mothers do’, surely there is no contribution in that book that comes close to ‘what you do’. Seeing Rose tucked up in the huggabug made my heart sing. I know that it’ll have it’s own challenges, but being able to step out the door with Rose to get a coffee (please tell me you haven’t given that up) will be more than enough for a while I suspect. Lx

  4. Fi says:

    Oh homeward bound! How deliciously wonderful yet positively overwhelming too. Just remember you guys have an army of support to lean on when you need it. Yay little one! Lots of love from us for what is sure to be a big week xX

  5. Lucy Lum says:

    I have read this blog over and over and am joining you in your feelings of absolute joy at bringing Rose home and also the initial fear of no backup medicos handy! Just remember Jane you are Rose’s amazing mother and understand her better than anyone else. While you concentrate on your beautiful family all in one place at the same time, please ask for help with mundane stuff that lots of us can do and are happy to help with. xxx

  6. Helen says:

    Hi Jane, I can’t begin to contemplate what it must feel like to be facing the thought of taking Rose home at this point, but I really really hope the stresses will be far outweighed by the pleasures of having her in your home environment with the rest of the family all under one roof. Thinking of you and sending lots of love from down here xxx p.s. re the breastfeeding, it’s great you are still trying but if it doesn’t work out then don’t beat yourself up – I came back to work fairly quickly after having the kids and tried to keep expressing but my milk dried up – I’m sure it’s better to have formula than you tire yourself out xx

  7. Chantelle says:

    So excited to hear that it’s time to head home! You can finally begin to enjoy and relish in the joys of being home together. I bet the boys are so excited! Re breastfeeding – Only advice I have which I’m sure you’ve already researched is to try Pinky Mc Kay’s Boobie Bickies. All organic natural ingredients and available online through her website. The key ingredient is brewers yeast and have worked somewhat for me and some of my friends in increasing milk supply. You can also get a script for Motillium from your GP which I took for 3 months. I went through a tough time when I couldn’t fully breastfeed too. Call me if you want to chat about any of it. Sending you all lots of love, xx

  8. Kylie says:

    How exciting and frightening at the same time… But Rose’s smile in the outside sun…she wants that bikini on and to be playing outside with her big bros this summer! Always thinking of you guys xxxx

  9. Amy-Kate says:

    Jane!! I came back to see you today and you had already gone! How wonderful! I’m so happy for you! All the best back in Balmain. Rose is now right where she needs to be! She’s going to love having the boys around and both parents at once. She is a star and you have done such a beautiful job with her recovery and development. All of that strength she has is because of you!

    I’m so excited. I’m thinking of you on your first night all together. You guys will be great. All the best 🙂

  10. Simone says:

    Wow I hope you are at school tomorrow or on a Friday soon, I am looking forward to seeing you both

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