Although I havent gotten up to date yet on Jazzies journey, I have so many thoughts and feelings racing through my head, threatening to completely send me spiraling out of control in an emotional explosion the likes of which have never before been experienced by sentient beings!!!!! So I believe a good venting may perhaps circumvent a tragedy of epic, and more than likely humourous (to my kids at least!), proportions!!!
So Jazz and I were paroled yesterday evening after another, fortunately brief, incarceration at Monash paediatrics!! As always, She was hyper, and it took quite some time in ED before the nurses and doctors saw that she was in fact desaturating and requiring more oxygen. Even when she's hypoxic, my Jazz is a whirlwind of energy!!! I think if we could somehow harness it, she could quite possibly power the town of Cranbourne in its entirety, single handedly!! No exaggeration!!!!
Whilst I'm so grateful that she's only been admitted twice this year both times for viral exacerbation of Asthma, first time for 2 nights, this time 1 night; instead of weeks at a time like last year, I'm finding as she's getting older and even more hyperactive its so much more difficult to deal with her being confined in a hospital room. Over night she was so insanely active ( more than usual thanks to prednisolone and ventolin burst therapy!!!!) that her nurse asked the doctor if we could sedate her!!
But even harder to deal with, is how my other kids are coping....or not coping as the case may be. Having a prem for your fourth child, and being a single mother.......its just crazy!! Throw in the fact that the two boys have additional needs and it becomes utterly mind boggling. I know this may sound offensive to some people, and believe me thats not my intention, but I really do envy those mums who's first child is the prem. I know there are heartaches and grief that they feel. Not having the perfect pregnancy, the "normal" full term baby, all the associated guilt that we all feel regardless of whether its first, second, third child etc. But needing to be there for your prem AND other children is a delicate juggling act, which I fear I'm failing at.
My eldest son has an anxiety disorder and my 10 year old has ADHD, borderline I.D and sensory processing disorder...my daughter is 8 going on 28, but still struggles emotionally. The past 2.5 years, for my eldest son in particular, have been horrendous and was initially made worse for him by his father describing in very graphic, sickening detail, late term abortions not long after the boys met Jasmine when she was a week or two old. He also, despite having no knowledge of the subject, told my sons that their sister was always going to have health problems and would be disabled....I wanted to smash that man!
The kids managed reasonably well while Jazz was in hospital, and were so excited when she came home, they absolutely adore her and spoil her rotten....theyre totally besotted!! Which makes it all the more difficult when she has hospital admissions.
My eldest son is going through puberty, which exacerbates his anxiety disorder and he has become very rude and disrespectful as well as having some anger management issues. Ive been told he is hyper vigilant, which means he's always on 'high alert', adrenal glands pumping adrenalin, almost continuously on the verge of 'fight or flight', and the tiniest thing tips him over. Unfortunately his response is not flight but rather fight and when he is running on adrenalin and his body and mind have been taken over by the primitive 'reptilian' brain, rather than the cerebral cortex which is used for executive functioning (reason, thought, rationale etc),he is impossible to reason with. Despite screaming for help from CAMHS and medical practitioners, naturopaths, dieticians, private psychologists etc, over the past 5 years, no help has been forthcoming for him and in september when he sees a new paediatrician....it'll be our last hope. He struggles at school, which is hard for me to deal with as he has an iq of 120, yet hes failing because he cant concentrate, cant sit still and flies off the handle often. He has been known to quite often run away from teachers who consequently find him hiding in corners or under tables in the classroom. It just makes me want to cry. So much potential that cant be utilised. On the up side, when hes not out of control he is an amazing, kind, loving boy who wants to help everyone....(well, except me with the housework!!!)
So each time Jazz is admitted, my son gets worse. Its gotten to the point that his relationship with my mother is ruined. Mum and Dad have been incredible, and are my only support, but they find it too difficult to deal with my son, and believe me, he IS hard work!!!. They struggle to see beyond the bad behaviour, to a boy who is having some severe difficulties dealing with everything. They are seeing an ill-mannered, rude, 'bad' boy......which of course he can be, just like any other child.
With each hospital admission, I feel so much stress, not just because my precious baby is sick again, but because I know my son and my mother will be fighting. My son has seemingly no respect for my Mum and is very rude, and mum is very tired and struggling herself, so the littlest things irritate her. Its so hard because Im helpless at the other end of a phone line knowing the remainder of my family is being torn apart and theres nothing I can do. I cant leave Jazz, aside from the fact that she becomes hysterical and desats to 50 if I'm not there, she needs to be constantly watched as she climbs out of the hospital cot!! And I have no one to 'tag team' with....its just me.
I'm fervently praying that as winter begins to draw to a close, hopefully we can avoid any more hospitalisations.
Now that Ive had my little sook and rant. Another thing that I feel is guilt. Nope, not guilt over my baby being born early, I had no control over that and reconciled myself with that early on. The guilt I feel is probably a bit odder and probably not entirely rational!!!
Jazz has severe chronic lung disease....but she's home and safe on home oxygen, yes she's been admitted to hospital a lot, often for 2-3 week stints....but we always know we'll be going home relatively soon; we can always see the light at the end of the tunnel. I get stressed, and I get sad and I find it difficult when she's hospitalised. And, like right now, I have a bit of a sook......and THATS where the feelings of guilt come in. Two months after Jazzie was born, we were joined in Bay 7, the isolette next to Jazzies, by the most incredible baby and her amazing mother. At the time it was just another very sick and amazing prem, but after meeting her mother Rebecca the next night, I found out that baby Taylor was the most miraculous little person I would ever meet. She was 'The pacemaker' baby. Beautiful Taylor was the amazing little soul who defied everything and was the smallest person to ever have a pacemaker. The pacemaker was bigger than her!! She broke boundaries and changed rules and pushed the medical team to the limits of their understanding and then beyond! Miraculous was a term that just didnt do justice for Taylor!!
Rebecca was from Wodonga and being so far away, she stayed at Ronald Macdonald house. Taylor endured many surgeries and mishaps and came through like the amazing fighter she was every time. Jazz and I were honoured to help celebrate Taylors first birthday in May 2010 and I honestly believed nothing could beat her! Also during May 2010, Bec gave birth to another amazing premmie, so now she had two incredible babies in NICU, fortunately Ella didnt have the same problems as Taylor. In september 2010, beautiful Taylor got too tired and after some illnesses, her poor little body couldnt cope any more and she passed away. I was shocked and devastated, I thought she would beat everything that was thrown at her! Ella is still in NICU, bay 5 and still on CPAP and she is 14 months old. Rebecca has been living at Ronnie Macs for 27 months with her incredibly resilient and wonderful son Dylan, and the light at the end of the tunnel is still not quite visible to them yet.
Rebecca is the most amazing person Ive met so far on my NICU/prem journey. Shes been a constaant 'fixture' in NICU and has endured heartache that I could barely even attempt to understand. She gets tired, misses her home and family, and sometimes gets sad, but shes resilient and strong and supportive and mostly a happy, wonderful, positive person. She really is an inspirational woman and I feel honoured and blessed to have met her.
So when I go off feeling sorry for myself and having a whinge, which I know is just normal, we all do it, I cant help but also feel guilty. Because whilst severe, jazzies chronic lung disease is only mild compared to Ellas severe chronic lung disease. And although Ive been in hospital a lot with Jazz, I get to go home with her and Bec is yet to experience that.
So over the past 2.5 years i've learned MANY things-
Like every other premmie mum - gratitude that my baby lived despite the odds being stacked against her, gratitude for my healthy (?) other children, for my amazing and supportive parents etc.
And so much gratitude that I always get to go home with my baby. Home is something that we too often take for granted.
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