Mia had been attached to oxygen all her time in hospital so I could
never really go far with her. It was nice when all her bandages and
dressings came off. This happened all on one day. The Doctors came
in and said off with the dressings and out with the canula in her head
and also the NGT.
This was great as I could finally give her a proper
bath and it was promising for her feeds. We only had 2 tubes left to
get off her, and then I could see what my little girl really looked like!!
I remember many days where her oxygen would be turned off one day
and then when I came out to her the next morning it would be back
on. I felt very disappointed each time this happened. This also
happened with her NGT. Mia's heart rate used drop at times when she
would feed via the bottle or the tube which was very scary, due to this
the oxygen and continuous feeds were always hooked back.
I knew she could beat this problem as she had overcome so much
already. Every challenge the Doctors put to her she proved them
wrong. Many times they doubted her ability to do things and so
ordered tests, scans etc but each time the tests came back showing
she could do it. This happened with her swallowing and breathing
which we were told she would never do, even when she was
swallowing it was doubted that she REALLY was!!
Coming off the oxygen was hard for Mia. It seemed she was addicted
to it. We weaned her off it but she wouldn't give up that last 0.05! In
other words just a whiff, hardly anything. She ended up having the
Respiratory team come to look at her and they said that as Mia was
born 5 weeks early her lungs were very small, normally developed just
tiny. We had to be very careful of any respiratory illnesses as babies
with small lungs pick up 'bugs' easier than babies with normal sized
lungs. This was another reason we had to be near a major hospital. He
said they would grow fine in the future. To find out what was going on
with Mia's love of 0.05 oxygen, he booked her in to have a sleep study
done. They attached probes all over Mia's body and head and
observed her overnight. This tested how much oxygen and CO she
needed. When the results came back it showed that Mia had episodes
of apnoea throughout the night. Due to studies into the amount of
oxygen a baby needs during the first year of life to help intelligence, it
was decided that for 6 months Mia would be on .25 oxygen, day and
night. We had a small 7kg oxygen bottle for travelling and at night she
was hooked up to a machine.
Mia had issues with feeding from birth. She was a petite feeder
and as I write this now we are in hospital trying to get her to feed
on solids. Throughout her short life so far we have tried about 5
different formulas, adding calories, adding thickener, etc. She used
to have very bad reflux, which she has now got under control.
There has been alot of talk for months about putting a PEG
(feeding tube) in her tummy. After a lot of research and talking to
mums of kids who have one, my husband and I don't want this for
Mia. She looks healthy and is very happy- which is the main thing
to us. There is no point following the 'normal' growth and
development chart as obviously kids with Spina Bifida, Arnold Chiari
11 grow differently.
As every other challenge put in front of her- she will overcome not
liking solids.
We have been seeing a Speech Pathologist and have now started
to play games with her food. I get her sisters to help here as I
have issues with mess, and getting my hands covered with jelly
and custard etc. However, I must say that even after just a week
Mia is more interested in her food.
I am also taking her to Adelaide in a week to dicuss the PEG with
the Gastroenterology team. I am still determined she is not having
it! Whilst there we will catch up with her other specialists and have
a CT and ultrasound done.
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