Wow Maz - I am truly amazing at what a journey you have been thru with your little man.
You & Jed are wonderful people, and I guess at the time, you felt so lost, but, when i read your story, I am amazed at what courage, strength and determination shines through. I dont know if I could have handled the situation as well as what you have.
Maz, you have a remarkable way of telling your story, you have taken us all with you, and shown your true and raw emotions. It must be a difficult thing for you to relive, and to open up to us all, Thank you so much for doing so.
I am deeply in awe of you, and have always been admired your 'say it as it is' personality, and these trials have made you who you are today.
xx
Thank you so much for taking the time to share this. Your strength and courage that you pulled from somewhere, even thought you might not have felt it at the time, is amazing. You are a totally awe inspiring woman. And you have one lucky family and son. xo
I sat in the front of the ambulance as it drove from the Mercy to the Royal Childrens. I sat there listening to the doctor and the nurse talking about some personal things and I began to fume. My son was laying there motionless next to them and all they could do was think about them selves.......over reaction due to stress at the time but I snapped and asked them to please shut up to which I got a blank stare.
Weaving our way through the Royal Childrens was a headache. I was lost instantly and followed the staff like a lost dog. We were situated on level 4 I think....I honestly cant remember yet I know at the time when ever those elevator doors opened on that level I cringed. There were pink bottles of solution in front of every door and you had to wash your hands every time you entered. Heaven forbid you forgot...3 firm smacks were in place with a stern look.
Room four bed 4...everything 4...yep must of been level 4 cause all the numbers were the same. There were so many monitiors and beeps going on. I looked over to a weary looking woman who managed a weak smile. The look of pain and dispair mirrored exactly how I was feeling. Yet again questions and 3 more reruns of what had happened to Mateauz to this point. By this stage I was ready to collapse as I had not slept in 40 hours. I so needed sleep but fear factor kept me going.
I sat there looking at the other babies thinking why is he here...
The other babies in the room were all premmies, sun googles on, under UV lighting and my little guy looked what I thought was normal (he wasnt but I didnt see it).
I was asked if I had somewere to stay for the night...of course I did...the floor right next to my son. Sorry but that wasnt an option. They tried frantically for an hour to get me somewere to sleep as I refussed to leave him and was BFing. I slept on a fold our couch in the parents lounge that was located outside the wards but in view of all the room windows 2 min's from him. I dont think I really slept that night..I layed there for ages and watching were he laid feeling like I had let him down. Every time I saw a nurse or doctor go to him I sat up and watched like a hawke. it was only when they went away that I let myself relax enough to lay down again.
The next morning I was given a room in the parents section of the hospital. It was small, smelly and felt dirty but I was close to my baby and that was all that mattered. I was also given a voucher to use at the hospital kitchen that gave me free meals as I was BF mateauz...that helped out as food was expensive there and I did dare venture away from the hospital incase something happened.
The results from the lumbar puncture came through. STAFF infection and meningitis. More annitbiotics (he was on 3 different types), more tubes...new drip..more blood tests. Another lumbar was to be made in 3 days time and the hole time all I kept thinking was to keep pumping my bb's, my milk's going ot help him. They were red, sore, grazed but I just kept doing it. It was almost as if I was taking my pain, my frustration out on the dame expressing machine. I feed mateauz, went and expressed what ever was left...then went back an hour later...expressed again, and then waited until his next feed for the process to start again.
The staff were wonderful. I was aloud to hold Mateauz when ever we needed to be together. They never stopped me from holding him and I am eternially greatful for that. I still felt like my chanch to bond with him had been taken away...like we were always being watched due to the seizures. I use to sit there, storking his head as he layed curled up in my lap for ages with tears streaming down my face.
My heart was aching so much at this time. It wasnt just for Mateauz...my baby girl was at home asking were mama was. I missed my morning snuggles in bed with her and the smell of her hair when she hugged me, her big green eyes and her infectious smile...my darling Wilhelm..I had prepped him up for his first day at school and I couldnt even take him. I couldnt even see how excited he was to go with his big brother...and my darling Nikolaus...his big soft kind eyes would often be the last thing I imagined seeing at night....and I knowing that Nikolaus had cried when we told him that the baby was a boy because he was scared of having another brother with autism tore me inside. How could I explain this to him? he's already had so much taken away now this!!
And Jed....I could barely bring myself to ring him some days for the pain. Jed's sister had CP as well and it was due to her birth. This would bring so many memories back for him...what had he done to deserve this? First his sister and now his son!
........3 days after we arrived....Mateauz had another MRI.............
Maz - i don't think you realise how much of an inspiration you are to so many of us. not only have you survived a life-altering event with your fantastic little Mat, you've gone on to grow and thrive - and then given us the privledge of sharing so much of this journey. you've let us share in the most intimate and painful moments you've shared the past 12 months, given us a glimpse of the heartache you've lived through, and we all know the amazing person you've continued to be in spite of this pain
i really hope this sharing is helping you to process things that i'm sure have been repressed for months, to allow you to move through and beyond this, to heal the breaks in your heart
you're amazing hun! i really hope you can see that!
Reading this journey, I am feeling every raw emotion in the book. I can't begin to imagine what it would be like to live through it. You have always been an inspiration to me hun, I admire you so much.
This is my last chance to sign into BB before going away for a week. I will be waiting to read the rest of your story when I get back. I am so proud of you for sharing, you are such a help to so many women on here.
The first MRI showed significant damage to the left hand side of Mateauz lower brain. There were clots still 'floating' around in that section but the main clot that had the doctors worried was the extremely large on in his Vein of Gaelen..the main artery to the brain. This appartently was extemely rare....typical...friggen Murphys laws.
I had seen so many specialists......Nuro Surgeons...physio's, speechies you name it...all of who I had to repeat our story time and time again. I really wished I had a little tape record so i could have just pressed the replay button. I got so sick of hearing my own voice in the end. And everytime without fail...everytime they had to prod him like a cow...roll him over...check his reflexes. I just wanted to pick him up and come home...run away from these lies of sickness and lies of brain damage. All I kept getting told was the bad things...were was my rainbow...were was the sunshine after the storm?
We had 4 days of waiting from one MRI to the next. We had to give the clot time to see if the medications were stopping the growth of the clot or if it infact was increasing in size. 4 days of living on a knife edge emotion wise. 4 days of total blank and information overload!
It was in these 4 days that I found a computer and managed to log onto the net and start researching. I wasnt going to let this be the bee's all and end's all. No way! It was also the time when I could get on here...Belly belly...my friends and let everyone know how were we or weren't going.....I often sat at that lone computer at 12am at night to read of happy stories of everyone lives...i didnt post..I just read how well everyone was doing and it gave me the strength to keep going..the motivation to put one foot infront of the other.
I looked forward to family visit's..to my closest friends coming in to see me..not that I really remember much of it. I couldnt look at Sammi without crying the first time...I honestly dont know how she and Melbel sat there with me the way I was. I had no thoughts...no mind nothing. God, I didnt even have any dame clothes until Melbel bought me a bag full. I would have been lost completely with out those 2 girls.
The head honcho Nuro came and saw me..along with the team. she sat me down while they fussed about with Mateauz and said that we would more then likely be going to another hospital to have a wire inserted into the main vein in Mateauz leg that would lead to the clot in his brain and hopefully shatter the clot...BUT it came with risks....even more permanent brain damage. What the hell are you suppose to think when someone tells you that?
Lets just use your baby as a pin cushion shall we?
how does **** off sound?
If the clot was still grown then we had another heart breaking discission to make...give Mateauz a special drug that would give him a 60% chanch of death or allow the clot to grow until it exploded and him die painfully anyway?
How the hell could I process something like that with Jed let alone by myself in a matter of 2 hours???? I rang Jed so upset and said I just wanted to bring him home...if he was going to die then I would prefer just to bring him home and let him die around his family with no wires, no machines...just love from us all. It was so hard to do this alone..my screams echoed around in my head and my tears were held in the back of my throat.
I couldnt handle the testing anymore....I told them to stop until after the MRI was done. Thankfully they understood. I just couldnt hurt my baby anymore...he'd been through enough already and was only so little. Yet when he heard my voice his eyes opened and looked right at me..there was a sparkle, recognision.....a bond that only mother and child can carry. Everytime he looked at me...I tried with all my might to send positive vibes through to him...fighting vibes. I prayed all the time, prayed that my sunshine would live and prove them wrong.
I would walk through that hospital and see so many sick kids in there...kids that were grey with sickness, bald due to chemo, limbs missing yet they all had smiles on their faces. There was someone always worse of then us....yet they didnt let their illness effect them. These kids gave me the strength to continue and push to get the answers.
I spoke to one of the Nuro Surgeons about the dead brain cells that Mateauz had. She said that as Mateauz was so young that other parts of the brain would carry on parts of the work of the dead cells. This on its own switched a light on in my head. I went away and googled...everything that I could...its at this time that I read research that suggested that breast milk carries stem cells...AHHH ha another light bulb moment. I poshed even harder to breast feed then. I started massaging Mateauz everytime I saw him. For hours on end, I stood there, storking his legs, his back, his face just to get the circulation going. For hours on end I would either hum or sing
Sing....sing a song...sing it loud....sing it strong
Dont worry if your not good enough - for anyone else to hear
Just sing....sing a song
His first smile was when I was massaging him and as i started the first bars he smiled.....**** my son knew it was me!!! I felt like screaming WOOOO HOOOO but just did a happy dance inside.
MRI day came...I sat in the waiting room on the phone to Jed crying. Im not a very patient person...I need order and routine (hmmm bit spectrum like isnt it lol) so this waiting game was driving me insane. Ive still got the dame ear muff's they put on him in the tunnel you know...and I cant bring myself to look at them yet. Maybe one day after I print this all off for him I can but for now...no way.
So the waiting day for the results began....had the clot grown at all or was it still the same size...........
oh god Maz how did you do it. Its hard enough reading your story without crying, without having actually been the person that they told that to. I could not, beyond my wildest and worst dreams imagine what it must of felt like to be told that my tiny baby die.
Reply With Quote
Bookmarks