Back to reality…

Parag, one of the Neonatologists, verbalised a couple of facts I’ve been trying to avoid realising in the hope a miracle (or a few) would occur. I asked him not to say but he did anyway. That’s ok… I’ve been unable to push thoughts of what’s coming to the back of my mind without them popping back up in the forefront for a few days now. I guess there’s no good time to hear bad news…

So the future as Parag sees it looks like this:

  • Rose has a narrow oesophagus that will inhibit her ability to eat (up to about 5 years). Initially this will be a mechanical issue (as it is now) but it will develop into a behavioural issue requiring intensive therapy.
  • She will not be able to breastfeed effectively.
  • She will need a gastrostomy for years to ensure we can give her the nutrients she needs to grow (I wonder if they’d do a 3 for 1 deal – boys could benefit too – nope – too soon for jokes!).
  • Parag also said we will need help at home in the form of a nurse which is pretty confronting and it’s not something I want but I guess we will need to feel our way there.

Still waiting on results from sleep study being done on Monday and pH study that was performed last week. Results may mean additional procedures but will  cross that bridge when we come to it.

I’m putting my new theory about NICU crying into practice with a vengeance this morning. And potentially for the rest of the weekend!  I’ll focus on counting Rose’s many blessings another time..

About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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8 Responses to Back to reality…

  1. I’m a big believer in letting the tears flow – hugs & thoughts with you as always. Jxx

  2. Fi says:

    And I believe that Rose’s future shall still be bright, cos’ YOU are in it. Your strength has been nothing short of astonishing. Cry cry cry I say. Get it out!
    And never be too proud to draw all the support you need from your loving ‘network’ here.
    I feel completely useless from a practical sense, living so far away. But I’m here, and always will be, for anything I can do to help you & your precious family. Home in August for a little while. Hoping proper hugs can be arranged then, in lieu of cyber ones!
    All my love Xx

  3. Ness says:

    Hey huni, I wish so much I could be there to give you a hug. You are such an amazing mum, friend, daughter, sister and partner – never forget that. You are one in a million Jane and Rose is so lucky to have you as her mum. So let the tears flow….they are way overdue.
    If there is anything at all I can do, don’t forget that I am here.
    Big hugs and all our love xxxxx

  4. Hola wonderwoman
    one month at a time chica, Rose is a fighter I havent even met her but its so obvious through what she’s already achieved. Its not a reality check its information, but remember life surprises us all the time and my advice is one month at a time. I love Jane and your family. And cry as much as you fuking want I say, I do! xxxxx me

  5. San says:

    Gee, my love. That is a lot to take in. Howl as you need to then remember to breath deeply. Sounds like a worst case medical view and realistic as it might seem at the moment, Rose has already shown tremendous strength and will to overcome her obstacles. We will be with you each step of the way. Xx

  6. Lucy Lum says:

    You have a lot of crying to catch up on so just cry when you can and Im sure you will find it a release. What can I say except I weep with you too at times like this and just wish there was something I could do to help. Please keep me in mind for any kind of evening roster. I still work but have cut my evenings down to Uni 1 night per week, so I have plenty of free nights and even if its just washing up or ironing or something. Hugs to you all. xoxo

  7. Chantelle says:

    Let yourself express all the emotions building inside in any way you see fit! It’s your right and you’ll feel far better for doing so. You’re doing such an incredible job and you must always believe and hope for the best – even when presented with the worst.

    Try to see the idea of a Nurse as a highly specialised Nanny with lots of experience to help you. And look to your facebook group on tackling feeding issues when the time comes. I saw a fantastic documentary a while back on this topic and the way they taught young children to learn to eat food through play therapy/physio.

    Much Love to You All. Xx

  8. Louise says:

    One day at a time, one step at a time. Let it all out Jane, it needs to come out. Thinking of you and the family and sending you love. Lx

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