Day 137

Sorry if you felt ripped off by last nights blog, it felt very long to me typing one handed on my phone while holding Ellie. I didn’t realise how short it was til I saw it on a computer, oops.

Anyway this is the Ellie story (my version and ideas anyway). 16 days ago Ellie had just gone from CPAP to high flow and enjoyed her first bottle. 9 days later she was on low flow, minimal oxygen and no pressure, she was also drinking 4-5 out of 8 bottles a day. Then two days after going on to high flow she had her immunisations and the next day an hour long scan, then another quicker one in the afternoon. Needless to say as the week went on Ellie was working harder at her breathing and not drinking as many bottles, this was put down to her immunisations. My theory now is that she is flat out exhausted. It was only on the 11th June that we were called in because she was so sick. She has shown us what she is capable of, but needs to doing it all a little slower.

Ellie has severe chronic lung, it is going to take 2-5 years for lungs to become larger and stronger. All her tests are clear for infections and viruses. She is purely exhausted. Even though Hannah looks well she also has chronic lung. There are times at home when she has to work at her breathing simply because something has made her tired. I am going to use this as a reminder that my beautiful daughters can get very sick very quickly and easily. A mild virus to one baby will almost guarantee Hannah will be back in hospital and could put Ellie on a ventilator. Please don’t touch the girls hands or faces or any part of them. I’m finding it very hard because it feels mean to tell people to back off. But I have seen my girls so very sick, so if I seem rude I apologise, but please don’t touch my babies.

They tried Ellie on high flow for about 5 hours early this morning but her effort with her breathing increased again and she is once again on CPAP and looking comfortable. We will confirm with the consultant tomorrow that her hernia surgery will be postponed. She needs this week to rest and recover.

One thing I forgot to mention yesterday is the spot in level 3 that she has moved too. The only bed available was the bed in the isolation room, which means Ellie is getting one on one care (because of her positioning and the other baby near her), she has a heap of space around her bed and it is nice and calm and quite (very different to level 2). She can also listen to her music without annoying anyone. She has been getting a lot of visits from her nurse and doctor friends (she is now just metres from the doctors desk). So although she has had a setback, it is nice to see her looking well (normally a setback means she looks terrible because she is so sick) and she is enjoying the luxury of her private ‘suite’.

*Deb

PS so far she has gone through 3 feeding tubes and two cannulas in 36 hours, thankfully they have given up on cannulas now.

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Back to CPAP and hugs with Mummy

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A short stint on high flow, giving her nose and head a break.

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7 thoughts on “Day 137

  1. All of that activity certainly was exhausting on top of her chronic lung condition. Our little boy certainly had breathing set backs associated with immunisations and other big events. And don’t make any apologies for asking people not to touch the girls or to wash/sanitise their hands. We had everyone “do their hands” for months when our boy got home… It was only when he got crawling and into everything that I realised it was time to switch to washing his hands instead of everyone else’s!! We still steer clear of anyone with a bug tho and touch wood he’s avoided a lot since discharge. Sending you all lots of best wishes!

    Liked by 1 person

  2. Debs never ever feel rude when protecting your girls, yourself and Matt have every right to tell people not to touch them, it’s every parents right and in your situation even more so! Glad to hear Ellie is comfortable and enjoying her own room. Xx

    Liked by 1 person

  3. Deb, sounds like you have grown enormously in your confidence to innately know what your children need, even with all the complex medical situations/processes in play. Jen calls it Mumma Lion – I’ve always talked about my Mama Bear instinct – wanting to protect my children (and now grandchildren as well) from all that may harm them.
    Ellie, enjoy your private digs, lack of annoying cannulas, soothing music and all your Mummy and Daddy cuddles xo

    Liked by 1 person

  4. No need to feel mean or apologise for wanting to protect your precious, beautiful little girls 💕👭 Loving thoughts and prayers still coming your way xxx 💖💖

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  5. I pray continually from your beautiful little girls, and will continue to do so, but tonight will include a special pray for you Deb and Matt. We focus so much on Ellie and Hannah, that we take for granted the health and wellbeing of both of you. The strength you need to just get through a day astounds me.
    Still you find the time to share this amazing journey with us, on a daily basis. God Bless you both,
    Faith, Hope and Love xx

    Liked by 1 person

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