Day 253

Well I think the meeting went very well this morning.

The current plans for Ellie are:

  • The sleep team will review Ellie’s saturations each Tuesday night (we will get results for this each Wednesday).
  • She is to be weighed each Monday and measured (the real factor in improving her lungs) once a month.
  • Another impedence study will be conducted concurrently with the sleep study in two weeks time to see if the de-saturations are being impacted by Ellie’s reflux. Plus as a another look as part of the determination on a fundoplication or not.
  • As of tomorrow Ellie will have one hour off feeds (she is currently fed 24 hours a day), during this time off she will be allowed to start trying solids – this will begin with a smear of puree on her lips.
  • Her breathing support will be adjusted according to the sleep teams reports each Wednesday. My hope is that she will still come home on low flow while she is awake and CPAP while she sleeps/at night, as a maximum.
  • In the new year she will get her hernias repaired, this will be done in conjunction with a gastrostomy (a feeding tube that goes directly into her stomach). This is not being done until next year so that they can trial her on NG (directly into her stomach) feeds first and have those established before they decide were they put the gastrostomy (stomach or duodenum). Unfortunately a gastrostomy means she will need a general anaesthetic. However awaiting til the new year will hopefully mean been she is much bigger and he will be better equipped to recover quickly.

Thanks for all your support. We are excited about possibly meeting the Wiggles this Christmas, Emma might be able to teach us some Auslan!


The girls have a Christmas present request, if you are able xx

Please share this with anyone and everyone – if they can’t donate they may know someone who can. It took so many amazing people donating to save Ellie’s life. Red25 group Hannah Rose and Ellie Grace.

Thank you so much to all those that have contributed to the girls 143 donations so far, plus the 5 people I know of who donated today!


4 thoughts on “Day 253

  1. That is such a big plan for such a little girl, but it is no doubt good to have a clear sense of what comes next. Hopefully you are all starting to see the light at the end of the tunnel. Denise is right about the Supergirl suit – it was swimming on E in the last photos. Love the photo of laughing Mummy with her beautiful daughters. Hope Ellie enjoys her first smear of solids today – yummo! x


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