Lennox

[image]lennox.jpg

2012 was the year our miracle son would enter this world and change our lives forever! Our world started to spiral quickly out of control at 27 weeks pregnant when a collapsed lung was revealed due to a pleural effusion! As we are from Tassie we were immediately sent to the Women's Hospital in Melbourne! As it was just meant to be a day visit we decided my husband would stay home with our 2 year old and my sister would accompany me to my appointment. This is how under prepared we were!

You have a very, very sick baby he said....

Your baby may not survive he said....

What?? Was I in a dream? But I can feel him!?! How can he be sick? Is he dying?

The agony of been given 3 choices, ultimately being asked to play God is gut wrenching!!! His future uncertain, i planned to see through what I signed up for when I chose to become a mother! I'm fighting for my baby, and so out journey began!

I would undergo 3 very painful amnioreduction & thoracocentesis procedures which is removing amniotic fluid from myself with an exceptionally large and painful needle and also going into my unborn baby’s chest cavity to remove fluid! It was thought he may have some bad genetic disorder but all tests kept coming back clear! So why was this happening, why was my unborn child gravely ill?

Finally on my second amnioreduction, after removing 2 litres of amniotic fluid and 150mls of fluid off my son’s chest the culprit was reveled! A large mass, a tumor, was it cancer? The longest 10mins of my life as we waited for results! If it was cancer there is nothing we can do they said! So we waited, silent tears rolling down my face! It wasn't cancer, in fact they had no idea what it was!

A day later after extensive research we had an answer, it was an extremely vascular haemangioma! It was the first case in Australia and 3rd in the world in this particular area! Which also meant it was inoperable due the vascularity of it, he'd bleed to death! So the aim was to keep him inside as long as possible but worsening polyhydraminos meant what should have been a drainage every 10 days narrowed quickly to just 3! Fluid was starting to go to his head and he was becoming distressed so at 32 weeks he needed to come out! I frantically rang my husband who had only just left Melbourne a few days before to be with our 2 year old son back home to get over here quick!

2:55 our son was born crying, incredible considering how sick he was and with a collapsed lung! I meet my poor husband in recovery at 3:15! Who I instantly sent to find our son who had been whisked away to be worked on by his own team of doctors! About 9pm that night the transport team with my husband, mother and sister bought my little boy to my room before they transferred him to the children's hospital! I would see him again in 3 days’ time! My husband constantly going between the 2 of us at separate hospitals!

We needed to give this fighter a name, a few were considered as I studied photos from my husband’s phone of our little boy! I needed something strong! We settled on Lennox Raphael which means:  strong, willing and healer of the sick!

I met my little boy properly for the first time 3 days after his arrival! There were so many machines and tubes and cords I didn't even see him and asked my husband where he was? This tiny little boy amongst things I'd never imagined seeing! He turned his head and opened his little eyes as he knew his mummy was finally by his side! And there I stayed for 3 long months in NICU!

He was treated initially with a drug called propranolol which was aimed at shrinking his tumor! He also had problems with a right sided chylothorax which he had 2 chest drains inserted and they remained in for about 2 months!

The propranolol wasn't working in fact at 14 days of age he went into cardiac failure! The nurse rubbed my arm and said we're doing all we can, as I watching doctors working on him as his heart rate plummeted and he turned grey! After about an hour he was stable again, I left went back to my little Ronald MacDonald House room collapsed at the foot of my bed and cried! Why was this happening? What did I do wrong!? I felt this was getting too tough and I couldn't see how my little man was going to overcome so many obstacles! I made the heartbreaking decision that night that I would go into his room in the morning and tell him, if this is too hard you don't have to fight! I don't want you to hang on if you can't!

That morning feeling sick to my stomach I entered his room but that little boy who we almost lost the night before was thrashing about that cot as if to say, I'm not giving up yet mum!!! I told him instead, as long as you’re fighting, I'm fighting!!!! And that was that!!!

It was decided to start a new treatment in the form of chemo! My baby wasn't even meant to be born yet and he'd be starting chemo at 34 weeks gestation!? All his hair, eye brows and eye lashes fell out! His little bowel stopped working from the chemo and he wouldn't poo for a month! His tummy blew up like a balloon, not to mention the constant bile pouring from his chest drains!!!

While you'd think dealing with this was enough, we also had to witness 3 babies grow there angel wings in the beds next to him! Sitting in a room listening to machines being switched off and a mothers cry as she held her angel for the last time, as YOU sit looking at YOUR sick child wondering if it was his turn next is just cruel, no mother should have to say goodbye! But we still had our little boy, we were lucky!

3 long months passed and it was finally time to bring our little boy home to Tassie! He had his very own medical plain transfer him to the Launceston hospital where he would stay for 2 weeks while I tried to teach him to breast feed, not bad for an almost 4 month old baby! He did and we finally were able to go home!

In and out of hospital for the first year mainly due to bronchiolitis, common after being intubated for months from birth! We finally had built our sons health up that he was now ready for the big one! Open heart surgery! It was always on the cards but I was always hoping his little heart would fix itself, it didn't, it got worse. So at 18 months of age, back to Melbourne we went! After already having his pulmonary valve ballooned at 12 months of age after further assessment more work needed to be done!

His surgery went well, we met him in intensive care and were relieved it was all over! Or so we thought! It was then revealed Lennox couldn't breathe, at all! His lips turned blue! He was on full oxygen support yet again! He had a pericardial effusion (fluid around his heart) and swelling from the surgery AND he had developed a nasty respiratory virus, RSV, which all together had closed off his airways and he was put into isolation. Time again would prove to be our savior! 2 months in fact! He ended up back in theatre a total of 3 times, to drain fluid and also remove sutures!

Our stay was also traumatising as Lennox's little roommate went into cardiac arrest and was too unstable to be moved so open heart surgery was performed in the room! Again all my fears as a mother were flashing right in front of me as I watched in horror!

This world of hospitals can do 2 things! Break you or make you stronger!

It's made me so appreciative of life! It made me realise how some people fight so damn hard to be in it.

Lennox is one incredibly lucky little boy but I feel totally blessed and lucky he's come into our lives because he has taught me things I would never have otherwise wanted to experience! You never know just how strong you are until you go through heart ache!

Lennox is now 21 months, at home and doing so very well! He's sleeping better, talking and trying his hardest to walk! How lucky we are! He amazes me every day! He always has a smile on his cheeky face!

We don't know what the future holds for our Lennox but one things for sure! We'll never give up, because I know he won't!

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