our time in PICU

Mia went through many challenges during her 2 weeks in PICU

but every challenge the doctors put to her she came out

fighting and won every round. I was so proud of her.

I spent a lot of time with Mia in PICU. I wasn't able to walk yet

comfortably, so Josh always wheeled me around in the

wheelchair. It was very sad being with her, but I was just so

happy each time I went in to see she was still alive. I was so

worried that each time I saw her it would be my last.

It was decided that on day 4 of her life she was to have surgery

to close the myelomeningocele. The neurosurgeons were

fantastic. I must say they were very serious to start with -

however, by our 7th week at the hospital, we were joking

together. It was explained that Mia might have to have a skin

graft if they couldn't close the skin in her back. I was a wreck

when it was time for her to go to theatre. Our anaesthetist was

very caring and understanding, however, I will never forget his

words as she was ready to go," say your goodbyes" which of course

made me cry even more as I leant over to tell her to hang

in there and fight and give her a kiss. I know he didn't mean it

how I interpreted it- to me it was as if I would lose her in

surgery. He saw how upset and worried I was, so he updated

Mia's nurse on a few occasions, who immediately informed us of

how she was going. Everything went extremely well and no skin

graft was needed. I was so appreciative for the updates over

the 4-5 hours she was gone.

I remember times when one specialist would be happy with her

progress and Josh and I would be feeling positive but then another

one would come in with a distinctly different tone and say 'but we

don't know if she can swallow she needs to clear her secretions no

one has heard her cough we don't think she can gag etc" Of course

this was devastating news for all I could think about was- what

does this mean for her?

I was a mess again. The doctors didn't' sound too positive about

Mia being able to do any of these things. They did not know the

determination and strength of my little Mia- she fought to come into

this world and has fought ever since, so needless to say she proved

them wrong on each account!

It's the simple things parents need to hear to keep them going just

to hear a doctor or a nurse say your baby looks good today

did a lot for me . It put that smile on my face, and made me feel

positive about the situation. That she would eventually get out of

PICU and one day home. I needed those days - and those

comments, instead of the negative ones all the time from Drs

telling me she can't do this she won't do that etc.

Babies with Spina Bifida have problems with their body

temperature- and Mia was no different. She was rugged up

in a heated cot; with a thick grow suit, 3 blankets and either

1 or 2 beanies on! We used to say to the nurses that she was

just simply not used to the cold Adelaide weather- she was a

Territory baby after all, she was used to the 40 degree heat!

These problems caused more stress for me when it came to

feeding. When we got Mia out for bottle feeds sometimes

her temperature would drop and she would experience

Bradicardic episodes, this is where the heart rate drops too

low. Most times Mia bought herself out from this and the

heart rate returned to normal, however, on one occasion she

didn't and the nurse had to stimulate her. This was a

nightmare for me - saying goodnight to her each night not

knowing what I'd be facing the following morning when I'd

arrive at PICU. Due to these episodes Mia went back onto

some Nasal Gastric tube feeding so she wasn't' coming out of

her warm cot so much.

When Mia was first born the Doctors thought she had a seizure so was

put on medication (phenobarb) to stop them. The amount of

medication was worrying to us as Mia seemed very dopey all day. After

a couple of weeks the Doctors discussed this issue and tested the

levels in her system. They found the levels were too high and so

decided to take her off it. After a week she was put back on a lower

dose- even though she hadn't had a seizure. Then Mia decided she

was going to sleep all day and be awake for the nurses at night

"partying with her fellow Bay 7 babes". I found out that she was given

her medication in the morning, so as this makes patients drowsy I

asked her doctor if it could be given at night so she was awake

through the day. Mia used to twitch a lot in her sleep as did my other

girls so whether Mia actually ever had a seizure or not will never be

known, but her rehab doctor who eventually took over her care

doubted that she was having them and so finally she was weaned off

the phenobarb over 5 days. This was great news for me as I felt she

would be more alert and wouldn't have a drug in her system that

wasn't necessary.

me and my mother in law beckie

The day finally came where Josh, Beckie and the girls had to go

home. This was very hard for me to say goodbye to them - not

knowing when I would see them again. We had no idea how long

Mia would be in hospital for, we expected to be there for a few

months. I was also concerned that I would be there all alone if

something went wrong and also making major decisions. Would I

cope alone?

Josh went back to Tennant and tried to arrange for job transfers to

Alice Springs. We needed to be closer to a major hospital and

airport. We definitely were not going back to Tassie. We hadn't

achieved what we came to the Territory for- that was to help and

teach our Indigenous peoples. Of course we had Mia to think of, and

we did. Josh and I both thought we could do it all, and to this day

we are. We also didn't want Mia wrapped in cotton wool, she is

going to live her life just as any other kid, and that's how we treat

her.

I moved into the ward with Mia and basically spent my days and

nights sitting with her, feeding, bathing etc. I didn't like leaving her

side. Occasionally I would walk into Rundle Mall and get her some

new clothes, toys- but not often.

our new bed on the ward

I had my first mothers' day with Mia in hospital. I woke up to a choccie

muffin and a beautiful message on her cot from her. (One of the night

nurses was busy throughout the night organising all this) Josh had left a

present for me which I opened with Mia- it was a gold mother and daughter

necklace which Mia will get half of when she is older. I got to spend the

whole day cuddling Mia and watching her sleep. What a perfect way to

spend the day.