Hand Hygiene

With winter rapidly approaching here and the cold and flu season already started it's important to refresh ourselves and our children on the importance of good hand hygiene.  Research shows there is a significant reduction in the transfer of 'germs' when good hand hygiene is implemented.  Having a child who has compromised respiratory function (Possum) makes it doubly important to our family.

Here is an article on the importance of hand washing and a guideline on when to wash.

Here is the poster that we have in our bathroom to remind everyone of the correct way to wash your hands.

We also have antibacterial hand lotion available on the kitchen counter at all times.  Whilst we use it regularly it is no substitute for hand washing.  If your hands are soiled they must be washed and dried properly to thoroughly remove germs.

I hope this has prompted you to remind your own children about the importance of good hand hygiene.

Possum ~ 100 days in NICU

Heartfelt

After reading Kat's most recent blog post at  Noah's Ark about their experience with Heartfelt it reminded me that i had been meaning to post about their services for quite some time.  I can honestly say "I wish I had known" about their services when Possum was born.

Heartfelt is a volunteer organisation of professional photographers from all over Australia dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature and ill infants and children in the Neonatal Intensive Care Units of their local hospitals, as well as children with serious and terminal illnesses.   
Heartfelt is dedicated to providing this gift to families in a caring, compassionate manner.
All services are provided free of charge.

Gavin Blue and his team of Heartfelt photographers offer an amazing service!  Unless you have been in this situation yourself you can not possibly imagine how precious these photographs are for families.  Nor can you possibly imagine how special the photographers taking the pictures must be, to willingly walk into such an emotionally charged environment.

To raise awareness and support for their services i encourage everyone to 'Like' their Facebook page.  Can we help them reach 10,000 Likes?  Arm your friends and family with this information now.  Hopefully they will never need to use this service but i would rather that you know, than hear you say "I wish I had known".

Have your tissues handy.
Amber

Heartfelt : giving the gift of photographic memories from Gavin Blue on Vimeo.

Amazing Babies

I have the pleasure of knowing these families personally.  Have your tissues ready.



Baby Blake was one of Possum's neighbours in NICU.




Tracey was the guest speaker at this years HeartKids Heart to Heart Ball.  Unfortunately i was not able to attend and see the speech in person but as soon as it was available i watched online.

I have the pleasure of working with both Bronwyn (Baby Blake's Mum) and Tracey through Miracle Babies Foundation.  They are truly amazing, inspirational women!

2 Big Days for Possum

DAY 1 - Possum's First Haircut

Possum had his very first haircut today and went from this .....

OK, this one was taken a few weeks ago but you get the idea.

to this :-)

Sorry for the grubby face.  The tape leaves a 

nasty residue which seems to last for days :(

He was very brave, no tears at all and he didn't seem to mind the noise of the clippers.  We did Bugsy's hair first so we could gauge if he was going to meltdown with the noise but he was fine.  It was easiest not to try and hold him still but to let him down standing at the edge of the bath.  It's one of his favorite places to be!  He was well rewarded with a bath afterward to get rid of all the little bits of hair stuck to him.

My boys sporting new haircuts.

DAY 2 - Oxygen Therapy to be Ceased Immediately

That is what the respiratory pediatrician said to me today at Possum's review.  Wow!!  Way to go Possum!  He's been so busy growing and getting stronger since his heart surgery which happened to be 1 year ago today.

In February we had a sleep study and the results said that Possum maintained a mean oxygen saturation of 97% overnight with the lowest recording being 91%.  This is amazing considering during his first study his mean was 91%.  He had 50 episodes of central apnoea but the longest episode was only 8.6 seconds so they are not of any concern, and very normal in children who were born as early as Possum was.

It's very exciting.  Hopefully Possum will adjust well and begin to sleep better at night not having the cannular to deal with and oxygen blowing up his nose.

The Dr was quick to point out that this year will be very testing on Possum's overall health.  He will not receive the RSV jabs this winter, nor will he have the respite of oxygen at night.  We will need to remain vigilant about only socializing with healthy people and avoiding crowds over the winter months.  A small price to pay to keep my little boy healthy.  I'm so glad that we homeschool and don't have to deal with all the classroom bugs!

Possum's Sleep Study

Possum had yet another sleep study at the children's hospital in the city to check on his night time oxygen saturations.  Once his over night levels are high enough he will be able to come off oxygen at home.  We have our fingers crossed that this study will show that he is coping well enough to come off.

The studies are tough on the little ones.  They are hooked up to all manner of things and they just don't understand.  Possum was quite upset whilst they were sticking everything on him :(  However he soon calmed down once offered a breast feed and went off to sleep.

Possum all wired up and asleep.

He woke several times over night, nursed and went straight back to sleep.  Much better than the last study!  Last time he cried on and off from 7pm until after midnight when he finally fell asleep properly and then slept in 40 min cycles until 6am when it was time to go home.

He woke up for good at 5am so we got up and started our day.  I was hoping that he'd last until 6am because we had a 10am appointment with cardiology so although i know they kick you out by 6.30am i wasn't really keen to get an early jump on the day.

We headed off on a big walk and then stopped at Miss Maud's for breakfast once they opened.

Possum enjoying some green potato rosti and corn puffs for breakfast.

We walked on to a local park hoping that i could let Possum loose to burn off some energy.  Sadly the playground was closed for maintenance and the grassed areas had just been watered.  Doesn't pay to get such an early start.  We did spy some birds though.

Two rainbow lorikeets squabbling over a branch.

These birds whilst beautiful to look at are an introduced species.

We walked on further and found a nice grassed area outside an office block and the grass was dry.  It was right by a busy road.  I wonder what the commuters thought of Possum and I playing on the grass so early in the morning.

Such a cutie with no tape on his face!

We got back to the hospital for our 10am appointment with cardiology and they surprised me with an echo.  Possum had a sedated echo in December and i thought that was it for a while.  But no they decided they had better double check if possible incase the sedative had given some incorrect readings on the pulmonary pressures.  Possum was a star!  I breastfed him whilst the tech did the ultrasound and he went off to sleep whilst having the echo.  Couldn't have asked for better.  I think the early start and so much fresh air had worn him out!  The cardiologist was VERY pleased with the results which showed that everything was fine and they don't want to see us for 6 months, woohoo!

Possum sleeping in the buggy after the echo.

After a big couple of days we hit the road for home.  Now we just have to wait to hear from the respiratory paediatrician to find out if Possum did well enough to come off nocturnal oxygen.  I'm cautiously optimistic :)

Warm wishes

Amber

1 Year Ago Possum Came Home

One year ago today I walked out of the big children's hospital with my baby boy.  He was still a tiny baby, just 2.7kg.

This isn't his homecoming pic.  It was taken 2 days before discharge when he was 

transferred between hospitals but shows how tiny he was in the baby capsule.

His 100 day NICU roller coaster was over.  He had made it!  It was a VERY emotional time.  On the drive home I stopped several time and what is a 2 hour trip turned into an almost 4 hour journey.  I didn't have the radio on, i was listening for every little noise he made to reassure me he was OK.

My little Possum had already come such along way.  Born at 25 weeks weighing just 875g with legs skinnier than my index finger and paper thin skin, no one could predict if he would ever make it home.

 This isn't great quality, it's a picture of a picture.  The original was given to me by the nursing staff, taken just 4 hours after Possum was born.  It was the first time i had seen all of him, he was whisked away so quickly after he was born, and i was unable to visit NICU during those first post op hours.  I remember thinking how perfect he was despite all of the wires, probes, tubes etc.  It was a lovely gesture and a picture i have treasured.

What an amazing year we have had with Possum home.  It hasn't been without drama, his heart surgery was another scary time!  Fortunately we escaped the flu season with only one hospital admission, so only two admissions for the year.  Our friends and family have been wonderful in this regard, understanding just how fragile Possum's health is and making sure we cancel gatherings if anyone is unwell.  I believe this has made a significant impact on Possum's ongoing health and strength.

Look at him now!  Who would think such a strong little one had had such a rough start to life.  I am continuously amazed by his strength, determination and courage.

At 15.5m actual, 12m corrected Possum -
has 4 teeth, 2 up, 2 down
can roll, crawl and pull up to stand
can walk holding his trolley (follow the link for a You Tube clip)
babbles LOTS
is still on nocturnal oxygen which will hopefully cease in February
has been cleared of pulmonary hypertension
has no ongoing heart concerns
happily feeds himself finger foods
has just learnt to drink from a sippy cup
still breastfeeds about 6 times in 24 hours
is approx 9kg (will be weighed on the 13th)
loves to splash in the bath

Today, we celebrate!  Where there is life there is hope.

Amber xxx

Precious Beads for Miracle Baby Mums

I stumbled across Peek-a-boo ICU on Facebook recently.  I'm not even sure how i came across them but i'm glad i did.  After i liked the page one of the first things to pop into my news feed from them was a beautiful bead, you know, like the Pandora ones, but it what a Micro Prem Bead!  I followed the link a little confused and what did i find...

an entire range of beads and bracelets/necklaces dedicated to babies who have been through NICU!  They are just beautiful, each bead representing something different and unique to those who have been there.

I could not help myself, my cart was loaded up quick smart and the order placed.  I must add that i loaded up my wish list too as a few of the beads that i wanted were out of stock.  I'm anxiously awaiting it's arrival, hopefully before i go on holidays at the end of next week so i can post a pic :)  I was too excited to wait until it arrived to share with you.  Mum's of miracle babies, make sure you check them out!

PS - i did have a small glitch checking out but once i e-mailed their customer service it was taken care of quick smart and my parcel posted the following morning.

Proud Mummy Moment

When your told your week old baby has had a brain heamorage you wonder what the outcome will be.  Despite doctors telling you they *think* everything will be ok, they never truly know and neither do you.  You wonder if moments like these will ever come.  I'm a very proud Mummy, my heart is bursting!  I had to share it with the world!

I can't work out how to embed the clip so please follow the link :)

http://www.youtube.com/watch?v=Jzwb7n7Tg-s

Christmas in NICU

Last year Possum spent his very first Christmas in NICU.  It was VERY hard for our family.  Owing to NICU policies Flossy, Bugsy and Chicky were yet to meet their new little brother.  On Christmas Eve we were notified that the children would be able to meet their brother on Christmas Day for the very first time.  Possum was almost 3 months old!  There were VERY strict conditions attached but we were so grateful!


Recently a friend posted this poem on FB.  She had found it somewhere on the net, I would love to be able to pass on the proper credit but i've been unable to locate the source.  It's very touching and sums things up perfectly.






Twas the night before Christmas, and in each isolette 
Little creatures were squirming and getting all set; 
Machinery sat by their bedsides with care, 
In hopes that good breathing skills soon would be there.

... Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...

When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.

Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.

More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"

Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.

As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;
A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.

He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side,
And running down his face was a tear he had cried.

And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."

Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"






Possum was very lucky and Santa did visit him in NICU leaving him a lovely reindeer bear, a treasured possession.  We are truly enjoying the magic of Christmas this year.  Please take a moment to think of the little ones fighting hard, hoping to spend their next Christmas at home with their loving families.

Sharing a Story

I had the pleasure of meeting Kat and Aaron through Possums journey in NICU. Their son Noah suffered Hypoxic Ischemic Encephalopathy at birth and his prognosis is not good. You can read his story and find out how you can help these amazing people by visiting their blog http://noahsarkperth.blogspot.com/ or by visiting their Facebook page Noah's Ark (community). They will be holding an auction shortly to help raise funds to care for their son.

6 months old

Possum is now 6 months old!

He weighs 5kg.

He has found his hands and likes to suck his fingers and thumbs.

He was rolling from tummy to back 3 weeks ago but hasn't since heart surgery.

He has had surgery to repair bilateral ingroinal hernias.

He has had surgery to ligate a PDA.

He is still wearing 0000 clothes.

He has moved from newborn nappies into infant size, just in the last week.

He smiles a lot.

He has started cooing.

He has been hospitalised once since the initial discharge.

He remains on iron for anaemia.

He is on monitoring for apnoeas.

He breastfeeds well, but still every 2-3 hours around the clock.

Mostly he settles himself to sleep.

He loves being in the Hug-a-Bub.

Possum has emergency heart surgery!

Just 2 weeks ago we went to a routine cardiac appointment only to be told that Possum had systemic pulmonary hypertension! He was immediately put on medication to reduce the pressures in his lungs and we were told that he would need surgery later in the year to fix his PDA.

Over the ensuing days Possum became breathless and wasn't feeding well. I took him to the emergency department and after consultation with numerous doctors it was found that the medication had worked too well and Possum had heart failure and pulmonary oedema.

We were transferred to the major children's hospital and after more discussion it was decided that Possum would have surgery to fix his PDA as soon as possible. The surgery was organised for the following day.

The operation went smoothly. Possum was cut under the arm about level with the shoulder blade. His lung was deflated and pushed aside and the PDA was ligated. He was ventilated for about 24 hours following the surgery and spent that time in PICU. During his time in PICU they weaned him off the sedation and morphine. The extubation was a little rocky for the first hour or so but after a couple of rounds of meds he was breathing on his own again, phew! He remained on supplementary oxygen for a further 24 hours. He resumed breastfeeding like a champ!

Possum in PICU

During our stay in the hospital it became evident that Possum has apnoeas when he is asleep. As a result we are now on apnoea monitoring when he is asleep and in his car seat. We have also now been told that he has a further heart condition, an ASD and we hope to find more out about that at our follow up cardio appointment in a couple of weeks time.