Bullying

A few days ago I posted a seemingly harmless comment on an online news article relating to a convicted criminal who was facing new charges for a different transgression.  It was suggested that because this individual was already serving time for other convictions, that new charges were ‘kicking a person while they are down’.  Going against better judgment, I commented that if a person was guilty, and proven so, that they should rightly be charged and serve their additional sentence. Commenting and offering opinions on articles of this nature goes against my better judgment, but nobody is perfect, sometimes we do things that we know we probably should just turn and walk away from. Entertaining fools offers no rewards.

I’m intelligent enough to know that right and wrong aren’t viewed the same for everyone. If we all did, we’d have no need for prisons, law enforcement and justice systems. Be that as it may though, my small opinion on any particular topic really does mean nothing in the greater scheme of things, not everyone will agree with them and that is also OK. What a dull world this would be if we all agreed with each other 100% of the time.

So I have to admit to being slightly surprised at the retaliation with which I was greeted with. Comments were made attacking both my opinion and my physical appearance, as an attempt to goad me into defending myself and retaliating. They were aimed at hurting me, making me feel inferior and a less worthy human being. Had those comments been hurdled at me even a year ago, I may well have taken them to heart. But I’m not the same person that I was a year ago. I’m stronger now. More confident. More self-assured in who I am and who I want my daughter to have as a role model growing up.

I want her to learn from me that there is a difference between right and wrong. That a society can only function when we uphold and understand right from wrong. I want her to show compassion and respect to others. She needs to form her own opinions on people based on their actions and not on their appearance. She needs to know that bullying, threatening, undermining and belittling someone to boost her own ego will get her absolutely nowhere in life.  I want her to embrace the fact that we are by design, all different, that your physical appearance has absolutely no bearing as to who you are as a person.   She needs to know that people will have different opinions and views in life and that is perfectly OK. She also needs to know that using her words to undermine, hurt and humiliate others for personal gain and self-confidence does not make you worthy anyone’s respect. I want her to treat others how she would expect to be treated herself.

I’m proud of who I am as a person. I do not shy away from standing up for myself or for my loved ones. I had to advocate, fight and throw my opinions around to keep my daughter alive, from before she was even born. I had opinions on her eating problems from the very first few weeks of her being home. I voiced those to every medical professional we encountered. They weren’t always heard, they weren’t always taken seriously, but in the end, they went a great way towards finding professionals who were able to diagnose her and help us, to this day.

I’m proud of the fact that my stance on right and wrong makes me the type of person that some people do not want to be associated with, because the feeling is mutual. Life is short. I’d prefer to spend my time with likeminded people who have respect for the law and understand the difference between right and wrong. I want the people with which my daughter will grow up being surrounded by, to be good, honest, loving people and role models with integrity and a set of morals and ethics that will go towards building her up into a strong, confident and compassionate person.

I’m also proud of my breasts, which were referred to as ‘pap sakke’ (saggy bags). Another comment and dig aimed at degrading an undermining me. These saggy bags nourished my daughter for 4 months. Against all the odds stacked against me, after nearly dying while trying to give her a chance at life, they were able to produce milk for her first few months in life. They nestled her when she grew strong enough to be held. Their warmth and comfort stabilized her blood pressure, breathing and heart rate. When she was suffering with reflux and screaming from exhaustion, pain and hunger, they comforted her. When she was sick and needed comforting, they were there for her and still are. They may not be as perky and pretty as a young woman’s, but I’m not a young woman anymore, so I can’t expect them to be what they aren’t.

We aren’t designed to leave this world in mint condition. My body and my breasts may not be in their best shape. But they have made sacrifices for my child that few can understand. To my own detriment in many ways I neglected my own mental and physical health and appearance for the last few years while focusing on raising our medically fragile daughter. I fought through deadly levels of high blood pressure, fluid building up in my lungs, my liver and kidneys failing, the risk of blood clots, heart attacks and strokes, all for our daughter to have a chance at life. I placed so much focus and energy in her first few months that I failed to recognize a potentially devastating combination of PTSD and PPD which very nearly resulted in me taking my own life.

So, if the worst insults that somebody can come up with is that my opinions irritate the shit out of them, and that my breasts are saggy, then I consider my life so far to be a fairly good success.

Once we have left this world, our outward appearance is going to be one of the least remembered attributes. We won’t be remembered for how much money we made, what types of cars we drove, or how big our houses were. We will however, be remembered for how we treated others, the lessons we taught them, the time we spent with them, and how we spent that time. We will be remembered for our actions, and words.  Best we use those words wisely and spread positivity, integrity, understanding, love and respect.

Now if you’ll kindly excuse me, our sickly toddler want to nuzzle up to her moms saggy breasts for comfort as she fights her first cold of the winter.

Potty Training

Two months ago we had an evaluation on Charlottes development. While she is no longer technically referred to as a micro preemie, and her age is no longer adjusted to accommodate her early birth, we do still need regular appointments to assess her overall development. With her last assessment over 9 months ago and her third birthday fast approaching we decided it was time to see how she was faring.

We had a checkup with her paediatrician the same time. He checked her out from head to toe, measured her, weighed her, checked her spine, ribs, posture and muscle tone. He asked about her home life, how she was talking, sleeping, eating. And I quietly held my breathe and waited for his verdict. Nerves fraught with tension, waiting for the inevitable concerns that would be listed. Instead he started beaming, told me to breathe and declared that he was so very proud of our little mouse and her progress! He was thrilled actually! Yes, her weight was still nowhere near where it should be, but she was healthy, strong, meeting every milestone ahead of schedule and she was still growing, even hitting the 25th percentile for height!

We got equally brilliant feedback from her OT! She is ahead in development, formulating sentences of a 3 year old (given that technically she was still only 2.5 years in age at the time of the assessment, this was amazing). She is counting to 20 which is double the number that is expected of her. She can recite the ABC song and is recognizing letters of the alphabet in the world around her. She’s phenomenal at memory games and building puzzles with far more pieces than is expected of a child her age. Overall the news was nothing but positive. Yes, she has some muscle tone issues we need to work on, particularly her upper body and arms, but we’re hitting those head on with specific fun activities to tone and enhance her skills and strengths!

There seems to be one benchmark that she’s not hit and nailed head on. The much desired and dreamed of phase of parenting a young and impressionable toddler. Potty training.

It seems that it’s the ultimate noddy badge for parents, a sign that you are well and truly the best and most successful parent in the world. If your tot turns three and still wakes up in a nappy, you as a parent are a terrible failure. Comparisons in parenting are part of the process though aren’t they?! I find myself being asked daily if she is weaned from her nappies. I see the wide eyed stare when I reply with ‘no’. The smug smirk that slowly spreads across a parents face when they proudly declare that their offspring is. The momentary judgement cast upon you as they assess your parenting skills on how quickly you were able to get rid of nappies in your life.

I would like to believe I’ve navigated these interactions relatively smoothly so far. But this topic is going to land me in hot water, soon. I’m going to put my foot in it without effective self restraint at some point.

Charlotte isn’t potty trained, and it’s not for a lack of effort on our part. We’ve tried so many tricks and methods and have come up nappy full. She has taken on a mentor, someone she loves dearly, follows like a hawk, loves to feed and cuddle with. Someone with ultimate patience, adoration and gentle love. Unfortunately her mentor also happens to enjoy pooping on the lawn.

Yep, her mentor is our Labrador, Paris. Not the greatest of mentors I’ll admit. There are many other traits of Paris that I’d love for her to sample, like a voracious appetite and the ability to sleep through any and all noises. But, as we all learn with parenting, our kids do as and when they will, with complete disregard to our own desires for them.

So yes. Our beautiful child is three and still in nappies. But does this affect your life? Does this make us lazy parents? Have we failed in raising her suitably? Are her chances of being a successful adult ruined because she’s still pooping in her nappy? The answer to all is ‘NO’. We’ve learnt from before she was even born that she marches to her own beat. She has never conformed to any yard stick of convention and norms. She does things as and when she feels she is ready. No amount of forcing the issue will change her mind, if anything, it only further discourages her to do something that she will do when she is good and ready.

So if your darling is potty trained and eating with silverware by the age of three, give yourself a pat on the back. But for the love of all the bacon in this world, don’t be a smug ass about this achievement. It doesn’t mean that you are a better parent than others. It simply means that developmentally your precious creation was ready sooner than ours.

So spare a thought for those of us still transitioning, instead of judging us. We literally dream of the morning that we’ll wake up and we don’t have to begrudgingly sort out dirty nappies. We dream of walking down the aisle and not needing to grab a bag of nappies for the trolley. We’ll get there I promise!

Mammas who are still dealing with nappies daily. I see you!!!!

THE NICU EXPERIENCE

The TV series ‘this is us’ recently aired an episode in its latest season where one of the main characters experiences a premature birth at 28 weeks. I’ve not yet been able to watch the episode myself, but I have seen many comments eluding to the fact that it is sadly, wildly inaccurate and does not portray the NICU experience as well as it could have. I can understand though how much of a daunting task this could have been for producers though, so I’ll reserve judgement for when I’ve seen the episode myself.

Thing is though. The NICU is near impossible to describe. Nothing can prepare you for what you experience when you walk in there for the first time. It is terrifying. It’s like bulldozing through a brick wall, in a hazy slow motion, while someone is throwing bricks at you. Blow by blow you keep moving forward one step at a time, you can’t stop, you can’t run for cover, you have no choice but to keep moving forward one step at a time.

Before you even get to see your child for the first time there are ground rules, things to learn, things to do. Learning how to wash your hands, where to leave your phone, what you may and may not wear, what you may not bring in, where you leave your handbag, bottled water, much needed coffee, etc. These are only the beginning and once you’ve navigated your way through washing your hands and ensuring that your clothes are cupboard fresh and not covered in hospital germs, you enter your babies room. Any number of life saving equipment surrounds their incubator, attached to them, keeping them alive. You search in the dark of the incubator for the tiny body that is apparently your baby. When your eyes finally settle on her you are shocked at just how small and fragile she is.

A rare moment when the Giraffe Incubator is open. Charlotte is in there, somewhere.

You are only beginning to comprehend what lies ahead for you and your family. While you are still trying to comprehend what’s happened, your babies nurse gently explains her vitals to you and tries to navigate you through it all. She’s honestly giving you as little information as possible during your first visit. But it feels as though she’s throwing a medical journals worth of information at you in one go. You can hear her, but you can’t really make sense of it all. All you can do is to look at your child. Breaking eye contact is next to impossible, you fear that if you stop looking at them that something will happen to them, that they’ll feel you leaving their side and not want to fight any more. You are trying to hear the nurse, but there are a thousand pieces of equipment humming, pinging and beeping in the background. Just outside the door are more nurses discussing their patients, alarms beep in the background, a radio plays a familiar inappropriately cheerful song in the background. In the corner a mom is reading softly to her baby. You want to ask questions, but your tongue has gone dry. And with every unfamiliar new alarm sounding off suddenly in the background or in your babies room, your heart stops beating, fearing that the alarm is announcing death.

Welcome to the NICU. Your journey is only just beginning. For most babies, their stays will be nothing more than a formality or precaution and a night or two, albeit, these few nights will be understandably terrifying for their parents. For others the stay will be for a few days, perhaps even a week. And for a small percentage, the stay will be months.

It’s a unique world. One that can only be comprehended and understood once you have been unwillingly cast into it. If you were fortunate enough like we were to be part of a small and intimate NICU, you find yourself becoming part of the furniture almost. You sit at your daughters door, confined to her room, her sleeping on your chest finally, or still confined to her incubator, reading out requested nursey rhymes to staff and parents. You share jokes, knit patterns, favourite recipes.

You learn to read the nurses faces in the morning when you arrive, you know when there’s been a new arrival and it’s been touch and go. You learn which paediatrician is on duty, purely from a nurses demeanor when you greet them. You grab coffee for everyone from the staff canteen, you’ve been there so long that people start assuming you are part of the staff content of the hospital. You assist new parents when they are standing by the basin, unable to remember exactly how to wash their hands, terrified that if they do it wrong that they will kill their baby, so they stand there and stare blankly at the basin.

You stare in awe at your baby and wonder when you’ll be able to do more than just hover your hand above her body, her skin so fragile that a simple touch can tear it open. You wonder if she can hear your voice. You are overwhelmed with emotion on the day you walk in and are told you can hold her for the first time. You’ve been yearning to hold her for weeks and the time is finally there. You can’t believe she is yours, how perfectly natural it is to hold her, in spite of the equipment attached to her. And then the shear horror when she is so comfortable that she altogether stops breathing or her heart stops beating while she lies sleeping on your chest. When nurses calmly massage her to get her heart pumping again and when essentially you learn to revive your own child every time it happens again after in the seconds it takes the nurse to get there. You begin to fear that holding her will kill her. You spent weeks aching to hold her but now you are too afraid to do so.

You learn the palour of her skin and the change of her vitals and know that the paediatrican will be asking for you to sign the umpteenth consent form for a blood transfusion. You stare at her first outfit, neatly folded and waiting beside her nappies, where it’s been for weeks, waiting for her to be strong enough, old enough, big enough to wear her first clothes.

You spend your days at your child’s bedside watching new babies arrive and go home before yours. For every two steps closer to taking your baby home, there is a guaranteed step backward as well. You swell with love and pride when you say goodbye to parents taking their babies home, but your heart aches for yourself, you wonder how it feels, and if you will ever feel it for yourself.

You overhear things naturally through your time there. You find out which babies are terminal, inoperable, made miraculous recoveries, gained weight, successfully transitioned onto breast milk, pulled through NEC, came off ventilation, were going to be discharged and so much more.

You go home every single day wondering if that night is going to be the night that you get a call to go back because something bad happened. You lay awake at night, waiting for the phone to ring. You stare at the ceiling and wonder how you will make it through the next day, but somehow you do. You look over at the calendar on the wall and realize you haven’t marked off yet another day in the NICU, 75 and counting you realize. When will it be our turn to bring our baby home???

Going home is the ultimate goal though isn’t it?! And when you are given the date you are thrilled, overjoyed, overwhelmed, and strangely terrified. You realize that you won’t be able to rely on all the equipment to tell you if your baby has stopped breathing or if her heart forgot to carry on beating. That looking after your baby will be on your shoulders only. After months of relying on the help and guidance of an entire medical team of professionals, you’re now responsible to care for a medically fragile infant. Suddenly you’re not so sure you want to go home after all.

Almost wire free and ready to go home.

Life within those walls is something that can rarely, if ever, be adequately put to words. Daily, you or those around you, are faced with scenarios you never imagined possible. There is no time to process what has happened, you live moment to moment, crisis to crisis, victory to victory. You watch the clock and count the days until you can take your baby home. Because when you walk out those doors, your life will pick up where you left it. The truth is though, that for most, life will never be the same again.

The NICU is an experience that changed me for life. I walked out those doors with my daughter as a different person. I’ve only skimmed the waters edge with some of what I personally experienced and what many other parents experience in their time there. Every babies journey is different, but the fear their parents feel when they know their child will be spending an indefinite amount of time there is universally understood by anyone who has worked or spent time there.

On our way home for the first time, after 91 days in the NICU.

Just a little update and shortcuts :)

I’ve not posted in a while, life happens and I have so many topics I’d like to discuss that I find that I’m struggling to pick one to focus on!

I am also looking at revamping the website to make it more user friendly to find articles and move away from a blog focussed site and include more pages, links, information relating to prematurity, pre-eclampsia and of course #charlottesarmy and the preemie octopus that everyone loves so much!

Are there any specific topics that you would like to hear about? Perhaps an update on where Charlotte is currently, other than being the worlds most amazing and beautiful toddler? (yes, I am totally smitten and bias!!!)

I’ve also been asked for easier links to access our Facebook page and Instagram page. From a laptop the page is easier to navigate and the shorcut tabs to link to FB and Insta are easy, but I have noticed on tablets and smart phones that it’s not as user friendly. So in the meantime here are the links for easy access:

Facebook: https://www.facebook.com/RaisingCharlottePE/

Instagram: https://www.instagram.com/raisingcharlottepe/

For new followers wanting more information relating to the crochet preemie octopus here is a link for one of my articles as well as the crochet pattern: http://raisingcharlotte.co.za/2017/11/21/charlottes-army-crochet-octopus/

So in the meantime I’ll leave this here. Charlotte 2 months shy of turning a whole, mighty and incredible 3 years old in early May! Can you believe how time has flown?!

Broaching the heartbreaking topic: Abortion

I’m going down the rabbit hole with this blog post. One of the most debated and contentious subjects out there in this big scary world. One that brings out the best and worst in people.  Abortion. More specifically late term abortion.

Over the last week I’ve seen a number of post shares of articles relating to the newly revised Reproductive Health Act passed in the State of New York in the United States by their governor, Andrew Cuomo on the 22nd of January 2019.

Most of the articles shared have been propaganda from websites who have no right in posting the misinformation and biased ‘information’ that they have been sharing.  These articles imply that any women can simply walk into a hospital or clinic in the third trimester of their pregnancy and terminate a perfectly healthy pregnancy at a whim. The bill which was passed couldn’t be further from the truth.

As many may already know. I was diagnosed with a life threatening illness to myself and my daughter when she was 22 weeks in gestational age.  At 23 weeks and 3 days I was advised to terminate her as her chance of survival was incredibly low, she was no longer growing, she and I were at risk of organ failure, strokes, fluid build-up and death. I’d never thought I would ever face the possibility of requiring an abortion  with a pregnancy that was very much wanted and while carrying a child that was already so very loved. But the world is not fair, it is often cruel and unjust. We made our decision and I am forever grateful that I had the legal right to make a decision that I felt would be in the best interest of myself as well as my daughter.

In South Africa the law on abortion can be abbreviated to the following:

  • Any woman of any age can get an abortion if she is less than 13 weeks pregnant, she does not need to supply any reasons for her decision;
  • If she is between 13 and 20 weeks pregnant she may legally have an abortion if her own physical and/or mental health is at stake, if the baby has severe mental and/or physical abnormalities, if she is pregnant as a result of rape or incest or if she is in a situation where her economic or social situation is deemed insufficient for her to raise her child.
  • If she is further than 20 weeks pregnant she may get an abortion ONLY if her life is in danger or there are serious defects in her unborn child which make them incompatible to survive beyond birth or are already in physical pain.
  • Abortions beyond 24 weeks are rare and uncommon and not performed unless medically necessary.

But back to the New York State Reproductive Act of 2019. 

* It changes a specific section of their current law which deals with abortion. Changing it from a penal code to a health code;

* It allows midwives and physician assistants to perform certain approved abortions;

* It guarantees women the “right to an abortion, up to the first 24 weeks of pregnancy as codified in Roe v. Wade”, this law is exactly the same as the current federal law in the United States of America that has been active for the past 46 years; and

* It allows exceptions which will permit abortions after 24 weeks gestational age.  This is only permitted if the women’s life or health is at risk, or if the foetus is not viable and cannot survive outside of the womb.

In America third trimester abortions account for 1.3% of all abortions performed. In South Africa I’m uncertain as I couldn’t find reliable sources online for accurate statistics.

Read those again, and then again.  Then go back to the articles you have shared. Not one of articles I have seen shared have divulged any of this information. Quite the contrary, their propaganda is to exclude this information. Alluding to the fact that women across the state of New York can simply waltz into their nearest hospital a few weeks before their due date and terminate a perfectly healthy infant because they no longer want that their children.

Have you ever found yourself in the position of possibly needing to terminate a pregnancy?  Particularly after you have felt your child moving inside you. After you have heard the beauty that is her heartbeat? After you have had several scans showing her movements, her tiny little hands, her sweet delicate nose? 

I was faced with that. I was dying. My child was dying. Her chances of survival at my initial diagnosis was grim, she was not likely to survive beyond birth. If she did survive she would not likely live for long, her body would be unprepared, she would be in pain, she would suffer. At that point she was just short of 23 weeks gestation.  Infants born before 24 weeks gestation have incredibly low survival rates, from 24 weeks upwards their chances of survival increase daily, depending on their individual circumstances.
At 26 weeks their survival rate increases to 70%, again, dependant on their health status and medical interventions given prior to their birth.

I can go on ad nauseum on this topic, ignite many fires and lose many friends I’m certain. But the bottom line on late term abortions is this:

Children beyond 24 weeks gestation are loved.

Children beyond 24 weeks gestation are wanted.

Mothers carrying a child beyond 24 weeks gestation do not want to lose their children.

Finding out that your child is already possibly suffering from debilitating deformities and will either not survive birth or will suffer in pain for a few hours after birth, before passing away in your arms is a thought that is quite simply, unimaginable.  Knowing that if you continue with your pregnancy that you or your child will likely die. Knowing that if you choose to continue with your pregnancy, that your child could possibly survive but would probably lose their mother. Knowing that your child could possibly survive, but that they would spend months fighting for their lives, being poked, prodded, and unable to be held or comforted and face the possibility of any number of lifelong health afflictions that will affect their quality of life.

The New York State Reproductive Act of 2019 allows for a woman’s body autonomy. It gives her the right to choose what is best for her, for her unborn child and for her family. It allows her the option to spare her child further pain and suffering. Previously the law only allowed late term abortion if the mothers life was at risk, it did not allow women to terminate pregnancies if they found out after 24 weeks that their babies were already suffering or would not survive outside of the womb. 

Let me reiterate. A woman after 24 weeks of pregnancy is not going to be able to get an abortion simply because the wants one.

Our children are loved.  Our children are wanted.  From the moment our children are conceived and we find out about them, we go out of our way to ensure that they have the right start in life. We stop drinking, we eat healthy, we take our vitamins and suppliments, we have regular checkups with our doctors to monitor their growth and health.  The thought of losing them is always in the back of our minds, we seldom think it out loud unless we have a history of miscarriage and infant loss.

We chose to fight for as long as possible for our daughter. We agreed that when my body gave signs that it was beginning to fail that we would need to deliver her.  We agreed to give her a fighting chance. But I was given the gift of choice, after receiving all the medical advice possible, I was allowed the right to choose what would be best for me and for our daughter. I was given body autonomy.

I’ll be lying if I didn’t question my motives on more than one occasion in those first few weeks of her NICU stay. Did I make the right decision? Was my decision to fight for her valiant or self-centred? What would her life look like?  Was I capable of caring for child who was likely going to be medically fragile in some form?

Before sharing articles on such delicate, heart wrenching topics, ask yourself if what you’ve read is concise and accurate. Before you condemn the act of termination beyond 24 weeks, place yourself in another woman’s shoes.  If after you have received all the correct information, you still decide that abortion isn’t for you, respect that it is the right choice for someone else, respect that it will be the hardest decision any mother will ever have to make. Respect that for the rest of her life she will mourn the loss of that child. Respect that she has a right to protect her unborn child from pain and suffering.  Respect that she has a right to choose her own life.