The beautiful sunshine and spring weather pours in through
the window in Bay 9, it means we are approaching the time of Lily’s intended arrival
and heading into week 37.
It’s been a little while, but our little treasure Lily has
been keeping us busy lately. In the last two weeks she had made lots of great
progress. I am so, so proud of our little pocket rocket. She now weighs 2.5 kg.
When you hold her she is no longer fits neatly under your chin and above your
chest, nor is her skin thin and fragile. She sprawls out all over you, arms in
your face, legs near you belly button and grunts and grizzles when she’s
unhappy. Her skin is soft and healthy and she nuzzles into you and turns her
head so she can have a look at the grown-ups holding her. The warm air she
breathes on your neck and the rise and fall of her chest on yours, (sometimes
slow and sometimes fast) is hers, her own breathing, so different to the
mechanical breaths she relied on previously. It reminds you at that warm cuddly
moment, that you have a little daughter, who is in fact a teeny tiny little life.
Still working on her breathing and airways, but feeling like
her lungs are getting stronger. The doctors are making her work hard on her
breathing and very slowly weaning her off high levels of support, trying her out
on less invasive respiratory help. She is on bubble CPAP and has two lots of
two hours a day on high flow, which is just two little prongs that sit inside
her nose, rather than the big snorkel mask she has been wearing. They will
build this up to 4hours and 2 hours over the next week or two. At the moment
she is coping so well with all her new challenges, and just keeps getting
stronger and stronger.
I don’t like to get my hopes up, but hopefully we are
not too far away from leaving Bay 9 in the next month or so, putting us closer
to the door home. As your baby gets healthier, the bays with lower numbers
imply your baby needs less support. So, bay 7,8 & 9 are NICU- intensive
care, 3-6 are also a bit graded, but more like just a special care nursery, and
bay 1 & 2 are like a fat farm, plumping them up before they send them home
happy and healthy.
Lily has been madly sucking away in her cot the last couple
of weeks, so yesterday while she was on her high flow she had a go at a suck
feed. She has a cleft palate, in the soft palate at the back of her mouth. This
just means that she has a very good sucking action, but doesn’t have the
strength to create a good seal in her mouth. She had a really good go yesterday,
using a special teat on a bottle, she managed to have 5mls on her own.
As Lily approaches her original due date we are meeting more
specialists who are responsible for tracking her development and other allied
health services that will work with us. These people balance out the medical
intervention she receives to keep her alive with the impact these things have/had
on her physical/emotional development. She is watched by a physio, and has
regular eye checks. Today we met a music therapist to talk about how we can
support Lily in her noisy room with some soothing music we can leave playing
for her, and how we can create positive interactions with her using simple
rhymes and songs. Apparently she is already very musical, entertaining the
nurses with her regular bottom burps…not sure where she got that from…he he…
She’s such a cute little kid, her cuddles are the best and
she has started to look at our faces as we peer into her cot. She attempts to
follow your eyes and I swear there was nearly a half smile looking thing today…Every
day she amazes and inspires me with her tough little attitude and super strength.
