A big week for Lily

Butter wouldn’t melt in this little mouth right? Wrong! 

Peaceful and snug as a bug in a rug, little miss Lily had big plans for herself this week…we were enjoying a quite Friday night bedside with our little girl after a big work week for Mr T; but Lily decided to give us one more little surprise for our Friday night. The self extubator did it again, only this time she did while we were there. I’m not sure there is a more stressful experience, and I’m not going to challenge Lily to find one, this one was more than enough! The horrible feeling in the pit of your stomach, when you know something is wrong, but you can’t fix it, and you’re not sure if everything is going to be ok….I’ll be charging Lily when she’s older for the hair appointments I need to cover up the grey.

Clearly annoyed with her ventilation tube, Lily decided to make matters into her own hands and dislodge it; the quickest way to get every nurse and doctor in the NICU to race in and see what’s happening. The sounds and noises are more serious than usual, as the oxygen saturation drops, followed by the heart rate and respirations.

A silver lining this time though…they trialed Lily without her tube, and a ventilation called CPAP, delivering oxygen just through her nose, rather than directly into her lungs…and so far the little rascal is still on it and going well. Still having desaturations in her oxygen and forgetting to breathe every now and then, but coping so well. Her new gear makes her look a bit rapper, a bit hip hop and bit spaceman like. She has a groovy little hat and a nose shaped cover with prongs that give her oxygen.

I think she must have just been ready to have a go on her own.

More exciting things over the weekend as Mr T had his first cuddle. The first cuddle is so special… Hopefully if she is able to stay off her tube ventilation, cuddles will be able to be more frequent and regular, so she can have more Mummy and Daddy skin time.

 I had a secret hunch that this week Lily was doing a little better, her growing size (1.4kg & 31 weeks yesterday) is helping her cope with life just that little bit easier.

We needed some good stuff this week, I had been starting to get a bit sooky again lately…earlier this week (after two strong weeks of no tears) I found myself balling in the car on the way to hospital listening to Taylor Swift- ‘shake it off’…that’s not even a sad song! I also met my first drug affected mother in the expressing room, and combined with the smoking one I see at the hospital entrance every day on my way in, was all getting a bit too much for my weepy heart, and it’s been feeling a bit heavy.

But our little gem has had a ripper weekend and left us feeling super positive about what she is capable of…no stopping her now!