100 days or Cake Day!

Today marks Rose’s 100th day in NICU. The NICU throws us a party, with cake!! I’d been looking forward to cake day and planned to take Rose out for a walk in her pram with the boys. But…. I had a dodgy tummy last night so I’ve removed myself from NICU again until I know if I’m okay or not. No further developments on the virus front so we are keeping hopeful.

With my time away from NICU, I finally looked again and found a Cervical Teratoma community! Baby’s born with a cervical teratoma. It was sitting there as a private group on Facebook and I never thought to look! It’s been pretty useful so far as I can ask about my issues and a lot of the parents in the group can tell me if their child had a similar issue and how (if) it was resolved. It’s difficult to read all the stories and challenges but it does help me to think about how best to help Rose and gives me a lot more questions to ask the Neonatologists. There are almost 50 members of the Facebook group (representing 12 kids)… doesn’t make Rose’s teratoma seem so rare, somehow, though I guess 1 in 40,000 is pretty rare..

I spoke to one of the Endocrine team the other day and he explained, interestingly and informatively (and perhaps unnecessarily), that if Rose had been born before Thyroid meds were around (say in 1940s) that she would have developed something called Cretinism, severe brain damage, horrific. I know torturing myself with what might have been indicates an unhealthy mind at this point but when coupled with the fact that I can’t find anyone who has had a prenatally undiagnosed cervical teratoma of her size and lived*, it’s made me realise how impossible a child she is … the impossible child (very drwhoish). So.. 100 days… pretty incredible…

Mum has subbed in for me this morning. Though of course my biggest concern is pausing the breastfeeding but as Rose has a feeding tube they can use and didn’t vomit much overnight I’m hopeful the interruption won’t cause too much of a problem.

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Gran & Rose – 100 day celebration with NICU staff
for the record: that’s not our onesie and I did not dress her!

Mum said that the pediatrician from RPA who first intubated Rose, enabling her to live, was there at the celebration and that she cried.  It must be a relief for her to see Rose so strong.  When you bring a baby back when it seems unlikely they will survive long (as I was told when I woke up from my GA),  it must weigh on your mind.

100 day old PARTY!!

100 day old PARTY!!

The nurses and doctors wrote some messages in Rose’s card.  They made me cry.  Not really because of what they said but because each of those people have been so so invested in Rose’s journey to wellness, thinking about her in the shower, when they should be sleeping, anticipating her needs and using their every skill, their knowledge and wisdom born of countless experiences to keep her safe and comfortable and alive.  Each signature reminded me that it’s taken such a huge amount of human resources, yours, theirs, HERS, ours for her to stay alive and (as far as we know) cognitively healthy.

 

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About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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6 Responses to 100 days or Cake Day!

  1. I’m glad you’ve found a support group, there’s nothing like talking to people who have first hand experience. What a shame you’re missing the 100 Day Party, but I’m sure you’ll be able to celebrate your impossible, incredible daughter in your own way. We’ll raise a glass to her this evening, too. Jxx

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  2. ursula garratt says:

    You are one amazing woman Jane. No wonder your Rose is so plucky, and determined – that drwhoish little one. My day starts and ends with your story! Not enough words in the dictionary to say what I think!! Much love. Ursula

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  3. Kylie says:

    Hip Hip Hooray on this special day! Xxxx

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  4. Caroline Parsons says:

    Congratulations sweetheart! An amazing milestone!

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  5. Steph says:

    Hi Jane there are only 12 kids in the Cervical Teratoma group even though there are just on 50 members. 2 New Zealand kids one Canadian and the rest are American. I think that is how it goes. Reading through your earlier posts there are so many similarities in Rose’s journey as there was with my own son Blake’s. Blake didn’t have reflux but he had major feeding and weight issues and was tube fed for 9 1/2 months on a mixture of EBM and additives to try and increase his weight and when we finally got onto a specialised bottle thickeners to help him be able to process the fluid.
    It sounds like you have a great support network so you must make sure you look after yourself. As hard as it is live each day as it comes. When you feel yourself stressing or agonising over something say to yourself Is this something can control if the answer is yes then do something about it if the answer is no then try to move on and don’t stress about it. If you can’t change it then try not to worry about it. Our facebook group is there to help so please ask any questions at all

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  6. Kate says:

    Congratulations Rose and Jane. All my love and hugs to you and your boys (Andrew included).

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