100 Days
A big milestone today. Lily has been with us for 100 days. Due
to the amazing care, love and support from her NICU nurses, she is progressing
well and now weighs 3.04kg. The wonderful people in the NICU have been so kind
and supportive of Mr T and I, and always ask to see how you are, and nothing
you ask of them is ever too much.
I read the other day it costs about $1000-$1500 per day to
have a baby in the ICU. At 100 days Lily has become a $100,000 baby. With access
to life saving equipment and expertise of care which has got to where she is
now. If this little kid ever considers smoking or other silly things…I will be
livid! I’ll be reminding her about the fragile, infected, collapsed lungs she
started with…
The NICU celebrate 100 days in the nursery with a special
handmade quilt that Lily gets to keep and a certificate. Lily’s friends in the NICU,
Ruby and Parker made her special cards as well and gave Mummy and Daddy T a
little celebration in the Ronal McDonald room at lunch time.
Lily is working her way to full time on her high flow,
currently 2 sessions of 6 hours per day. In a couple of weeks they might try
her on low flow, which is one step away from completely unassisted breathing.
Mr T and I met with the genetics team today to further
discuss Lily’s recent diagnosis. We are now well equipped with knowledge and
facts about the condition so that we can help Lily to the best of our ability
as she overcomes whatever hurdles she is presented with. She will be followed
very closely by her pediatrician (which she would visit as a premmie anyhow)
and as things arise, she will be referred to relevant specialists. Surrounded
by a loving family and support network, half Lily’s battle is already won. We know
how important parents can be as a determining factor for the future successes
of their children…so we think our Lily might just be ok!
Our music therapist has left us with a guitar for Mr T to
tinker with in Lily’s bay. We had a lovely evening the other night playing and
singing with Lily and she napped. It felt like real family time, amongst the
noises, clicks and alarms of the NICU. Lily also has an ipod and speakers next
to her that play 7 tracks selected by Mr T to help her soothe and settle when
she is grumpy or upset.
Another milestone at the end of this week, with Lily’s official
due date this Saturday 17th October. She will be referred to as a
term baby from then on, and have a corrected age as opposed to her gestational
one.
Cheers Lily! You are our little super star, keep growing,
keep trying, keep strong.
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