54 days

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Our daughter is 54 days old. 54 days that she should have spent in the womb. She is supposed to be in my womb for a further 44 days before she is meant to be born. She was born 14 weeks too early and has faced and conquered unimaginable obstacles. I look at her in awe and wonder every day. The little miracle that she is, and I am astounded with how powerful and fragile she is.

J and I have found ourselves in a situation that I think one is only able to understand if you have experienced it yourself. We were essentially robbed of many of the moments that couples experience during a pregnancy. We’ll never get to watch my tummy expand as she grows, we’ll never experience seeing her move inside my tummy, we won’t be looking forward to the 4d scan to see her face. I won’t get the opportunity to plan the perfect maternity shoot with my big preggy belly or be tortured with diaper jokes and games at a baby shower. J didn’t have the chance to gloat about his perfect daughter over celebratory drinks and a clichéd cigar. So many silly traditions that we missed. So many silly traditions that we were robbed of and will never experience.

When C was born, at 26 weeks and 3 days, her eyes were still fused shut. Let that sink in…. Her skin was paper thin and we were unable to touch her, initially because she was so fragile, later I think because we were just too terrified of causing her harm. She spent the first two days of her life outside of the womb and inside of a special plastic packet which regulated her body temperature and moisture content. Her limbs were out of proportion, her hands, feet and ears appeared too large for her body because she was at an age where she is forming into the correct proportions of a fully formed foetus. Before 26 weeks in South Africa, a foetus is not recognised as a viable (survivable) baby worthy of trying to save.

When most parents are adjusting to the idea of having a baby and are disagreeing on how to decorate the nursery and are starting to buy all kinds of books, gadgets and goodies for their bundle of joy, we were staring at our bundle of joy straight in the eyes, faced with a thousand unknown possibilities and a daunting time ahead of watching helplessly as she and her medical team fought to give her a chance at survival.

J and I are both the type of people who try to see the best or funny side of situations and I’ll admit to losing that ability on many occasions in the early days of her story. In place of all the experiences that we are missing out on, is a journey that very few have experienced or will ever be able to fully understand. We are able to see our baby’s growth and development first hand. We were able to see her eyes open for the first time, ever. We have watched her grow into her hands and feet. We’ve seen how her eye sight has begun to develop and distinguish between light and dark, we can see how she attempts to track movement. We can see how her hearing has developed and how she responds to specific voices and sounds. We are physically able to see, on the machines, the effects that physical contact have on her, or the sound of dad reading to her, or mom singing to her. We are watching our child develop and form and prepare for life before our very eyes, months before we were intended to experience it.

We share as much as we can of our experience with our friends, family and now with the world, to try put into perspective just how phenomenal our little girl is, and in the hope that our story will offer some insight for anyone who is facing the possibility of entering this rollercoaster ride themselves. We share as much as we can, but I’m not sure we will ever truly be able to explain the range of emotions one experiences when going through this, particularly when you are faced with a step backwards (they are inevitable), or the level of overwhelming joy when you see your child’s face for the first time without a pipe sticking out a nose or mouth, when you see her breathing unassisted for the first time or when you see the last drip has been removed from her body.

We are often asked how we are and how do we cope with this situation. There is no magical answer to this other than, we are okay and we have survived thus far with some of our sanity intact. With regards to how we cope though, this is all we know of parenting, this is our version of normal so I’m going to assume that we are coping as well as any other parents would in this situation. I know the latter is fact because we’ve met so many phenomenal parents that have come and gone through NICU. Stepping into NICU for a new parent is absolutely terrifying, you are walking into the complete unknown, I sobbed my way in the first time and sobbed my way right out again after meeting my daughter for the first time. It must be said though that no parents would survive NICU without the support from the nursing staff and fellow NICU parents. The support and dedication towards our babies wellbeing and of ours has been incredibly humbling, they are part of our daily routine, they are considered family and loved ones.
NICU is a family unit in its own unique beautiful form and I will miss everyone who is a part of it terribly when we are eventually sent home. I like to think that C made such an early arrival because she wanted an early start on making an impression on the world. She’s made one hell of an impression so far!

Mighty Mouse

Mighty Mouse and Dad

Being a parent comes with it’s own unique set of challenges. Tough decisions will need to be made at one point or another that will be in the best interest of your child. This week posed just such a decision for hubby and I. Mighty Mouse has done unbelievably well from the day that she was born, far greater than most micro preemie babies of her age. She has excelled and passed all her tests to date with flying colours. All with the exception of her lungs, and even that she has technically excelled in. Last week though we reached a crossroads in her course of treatment.

The long and short of the situation is that Mouse has been intubated for too long and has grown ‘comfortable’ being intubated, in the sense that she has not needed to rely on herself for 100% of her own breathing. Initially the decision to intubate was because she needed a break from breathing on her own due to her tiny stature, but at nearly 32 weeks gestation, she should be doing this mostly on her own now. An intubation pipe is also an easy and direct route for germs and viruses to enter her system, it is a potential breeding ground for bacterial growth, it is a foreign object for the body, one which scratches and irritates the throat and vocal chords. The longer it stays in, the more of a liability and a hindrance it becomes. Getting it out as soon as possible is critical.

A week ago we attempted an extubation and for the first few hours she thrived on CPap and our first session of skin to skin therapy. Four weeks after her birth I was able to hold her for the first time, it was terrifying and mind blowingly amazing all at once. But she grew tired very quickly and by the end of the day we were forced to re-intubate her. It was here that I started hearing whispers about Cortisone treatment and a few short days later we were faced with our first crossroad of decision making: do we implement the DART method of treatment which involves the use of steroids, or do we hope that she is able to come off the intubation on her own, considering that already her vocal chords and throat were swelling due to being intubated. Down each road were potential setbacks which could results in both short term and long term side effects. After careful consideration between hubby and I, consultations with her medical team and some medical research, we made our decision.

Mouse is on the 4th day of her treatment and her team and us are absolutely blown away by how she has improved these past few days, one of her specialists wants to extubate her tomorrow as she is already breathing without much assistance from the intubation tube. This will allow us to begin skin to skin therapy again, which she thrives on. Dad and I will be able to hold our child, for Dad it will be the first time.

It’s overall been a big week in progress for our Mighty Mouse, her skin has formed so well that she is now able to tolerate the same humidity that the rest of us are able to tolerate, the plan had been to take her out of her Giraffe Incubator and to place her in an open air incubator yesterday, but NICU can get quite busy on very short notice and we’ve had to postpone the great move for this coming Monday instead. She is also just a little short of her first weight target of 1kg.

Overall our Mighty Mouse is well and truelly living up to her nickname (proudly and aptly named so by another NICU mommy and her NICU graduate baby) and blowing us all away with her strength and determination. She has become an inspiration to so many people, we receive messages from near and far and I’m trying to write them all down for her so that one day she will be able to read for herself just how truelly remarkable she is and what she means to so many.

The Blushing Smiley

Smiley

My hubby pointed out that I suddenly have stretchmarks on my belly.

I could have sworn they weren’t there last week. I know with absolute certainty that they definitely weren’t there before or during my pregnancy. Magical, mystical, angry red stretchmarks on either side of my belly button (which is about as big at the Kimberly Hole at present) which seemed to appear overnight.

Instead of being angry about these stretch marks, I’m opting to view them as a trophy, a consolation prize from my caesarean, badges of honour to prove that in spite of not being able to go full term with my pregnancy, that I did in fact have a child and I did suffer through the pain and discomfort of delivery.

I had a drastic amount of sudden swelling in the last few days prior to my caesarean (I lost 9kg worth of fluid in the week after), add to that the obligatory swelling one can expect from abdominal surgery and suddenly the mysterious stretchmarks make sense. I feel the standard sense of pride that I suspect most mothers feel of their stretchmarks, and also a little sadness at knowing that my belly will never quite look the same again.

I’m going to think of those stretchmarks as the blushing cheeks to my newly acquired smiley physique. I’m going to do a photoshoot to embrace this uniqueness as well at some point, after I’ve been given my doctors blessings to get back to exercising, you know, to get rid of those cottage cheese thighs that I mentioned in a previous blog, those, I’m most certainly not proud of and am not willing to embrace. I suppose we all have flaws on our body that we are ashamed of!

For preggy mommies out there though, I would highly recommend the belly balm that I was using during my pregnancy, it really did help prevent stretchmarks (I started showing quite early on in my pregnancy and my belly grew quite rapidly). I use it now to relieve the skin irritation I feel from the stretchmarks. The balm is Nolie Belly Balm, all natural, all devine goodness tucked into a little bottle of bliss. It smells amazing and feels like heaven!!!

Losing that last shred of dignity

This has been a rough week, not for C but definitely for Mommy. I woke up at the beginning of the week with a sore throat. One is not allowed to enter NICU if you’re sick, babies in NICU are very delicate little beings, highly susceptible to illness, so every precaution is taken to prevent their environment from being contaminated. Micro preemies like C have underdeveloped or non-existent immune systems, so even a cold can become incredibly dangerous for them. All of this meant that I went a full four days without seeing my baby, four days that felt like a lifetime.

For four days I harassed nursing staff with calls to see how she was, begged for photographs. I keep saying I when I should really be saying WE as dad had his bout with the cold for close on 2 weeks, so has been unable to see his munchkin for 2 weeks. On Thursday evening I felt good and by Friday morning the cold was completely gone, I felt elated for all but one concern: my back. A few muscles on the left side of my back had gone on strike, on par with one of our national postal strikes, there was no way any of them were going to work, all that they were hell bent on doing was to sit on their asses and refuse to work until all their demands were met and then, when those demands were met, they’d protest some more, just for the hell of it, exactly as any self-respecting postal worker seems to do.

The nursing staff took pity on C’s mother who was hunched over like Quasimodo with a hot water bottle draped precariously on her back and they started calling every Chiro in PE to get me seen to ASAP. A kind lady took pity on the failed milking machine and offered to see me on short notice, I think she may be regretting this as I’m pretty sure my cries scared away a number of clients from her waiting area. I’m deeply ashamed of how much I howled and cried during that session, so deeply ashamed. I’m not one to cry openly in public so to cry like a baby in front of a total stranger, and then to cry all the way out to the car and all the way across town to my beloved Voltaren injection was horrifying. Imagine the scene though: A grown woman bawling like a baby, writhing in agony because every time she breathes in her muscles go into a full spasm, she’s undone her hair somehow and it’s gone back to full Amy Winehouse meets live wall socket, and she’s unable to tie it back up as she is unable to lift her left arm as that too causes her muscles to spasm, the worst affected muscle is located on her bra line, so she’s unable to wear her super sexy maternity bra, so she’s got this dangling from one hand, breasts now hanging so low she’s certain they can be seen falling out the bottom of her shirt (which she suspects might be semi see through), crazy Winehouse hairdo and is still a sobbing, wailing mess easing her way through the waiting area, with EVERYONES eyes on her. Whilst trying to maintain the last shred of dignity that she is able to muster she attempts to say ‘thank you for trying to help’ which is politely and mistakenly sobbed to a client instead of the chiro. Last shred of dignity lost. To put the pain into perspective, I’ve had kidney stones and I didn’t cry half as much as what I did when my back went into those spasms. To the Chiro: you know who you are, and if you never see me again, it’s because I’m just too embarrassed and ashamed and I sincerely apologise if I scared anyone away.

Today however was a new day, and a good day, because I was finally well enough to spend the day with C. She had a rough night but had thankfully settled nicely so mom spent the morning reading to her, dairy queening and chatting to the nursing staff, who are absolutely sensational. It felt like a lifetime had passed since I last saw her and I could swear that she’s doubled in size in the four days that I didn’t see her, but while she’s still restless we’ll be leaving her to calm some more before we weigh her. Two steps forward, one step back. I am constantly being reassured that she is doing exceptionally well in spite of her circumstances, but I’m guessing it’s a mothers curse to always be concerned about her child. Good news this week however was that it was finally confirmed that the PDA valve to her heart is finally closed and she passed her neurological exam with flying colours. The downer is that she’s developing chronic lung disease, which simply put, means she’ll be intubated for longer than we had anticipated. Two steps forward, one step back.

She was born 22 days ago and has fought tooth and nail on every single one of those days. She’s stronger than what I her or father will ever be. She blows us away with her fragile beauty, her alert eyes and her will to live. She’s also made it perfectly known that if Mommy sings to her that the only acceptable song is ‘Silent Night’ and that mommy is to hum it, not mouth the words, and that she much prefers stories and rhymes about boys or boys saving girls (her teen years are going to be interesting). She hates a dirty diaper, she hates lying still for longer than a minute (which causes all kinds of alarms to go off constantly and keeps the nurses on duty on their toes and she’s a massive fan of sleeping on her tummy. She loves listening to daddy reading her a story, but then again so does mommy!

The Butterfly Effect

There are a lot of questions about my recovery. It is something that I tend to skirt around or forget in the greater scheme of life. Currently, understandably, my world revolves around Charlotte, her development and how astonishing and resilient such a tiny little person can be.

So, I thought I’d take a minute and chat about cottage cheese, butterflies and, of course, me. Now doesn’t that sound selfish?!

When the dust surrounding my illness, the subsequent caesarean and my stint in recovery started settling, I was informed that I would be transferred back to my original doctor, who had played absolutely no positive role in our treatment, delivery or recovery. Not wanting to step on toes I agreed to the handover and regretted my decision not too long thereafter. I am happy to report though that I have officially made the transfer back to the most amazing doctor. Someone I have no way of ever being able to thank for all that she did for our family. Honestly, how do you thank someone for saving your child’s life or your own?

Anyway, back to cottage cheese and recovery. Strange combination you may think, but it’ll all make sense in due course.

I spent the better part of a month on bed rest, a few days at home and the rest of my incarceration spent in the maternity ward. The only form of permitted exercise was to get up and pee, once a week, that got eventful when I would be handed a 5litre container, a styrafoam cup and was told to collect every single drop of urine and store it in the bottle. ‘Do not waste a single drop’ you are commanded. The ‘peepee challenge’ as I fondly called it, is a 24 urine test to check protein levels, these levels will indicate how well/not well your kidneys and liver are functioning. The peepee challenge becomes an oddly exhilarating challenge in a world where you lie in bed all day watching crap on TV, stare at ceiling tiles and attempt to calculate how many bed sheets you would need to tie together to escape over the balcony and you’ll be very surprised at how much peepee you are able to generate, oh and a styrafoam cup is not nearly big enough for a pregnant woman.

Spend a month ‘resting’ and strange things start to happen to your body, you don’t notice them at first, I only noticed them after my operation and on the first evening I was allowed to shower myself, (sorry chaps, but a bed bath by nurses, not nearly as sexy as you think it is).

When I looked down in the shower I was horrified at what I felt and saw. One of the symptoms of pre-eclampsia is swelling in your face and lower legs, after the op I was given water tablets to get some of the water out of my body, thing is though, all of me had swollen up during my illness, so subtly that one almost didn’t realise it, until I woke up one morning and everything was hanging. I have Oprah arms, if I jiggled my arm fast enough now I could knock you out. My legs are unrecognizable, I used to have calf muscles and, while they made buying knee high boots a mission, I was quite proud of them, well, they no longer exist, in their place are standard calf muscles, skinny out of place little things that I’m not familiar with. My stomach is still recovering from the op so there is still a fair amount swelling there, and I was pregnant, that takes a while to settle I’m told, but my thighs… My thighs and hips are not mine, I’m almost sure someone placed them on me at some point while I was sleeping. While I was on the squishy side of life in terms of weight, I never had cottage cheesy thighs, now there seems to be an entire cows worth of cottage cheese down there, what’s even worse is how Oprah arm syndrome has spread to my thighs as well, and there is a bit of extra squishy just above them, at butt level, on either side of my hips that wasn’t there before, it too jiggles, if I had to sway sideways fast enough that I’m almost sure I’d create that ‘butterfly effect’ you always hear about, create an earthquake in China or something equally horrific.

Since delivery I have lost a total of 11kg, I now weigh less than when I first fell pregnant, with the added ‘bonus’ of the preggy belly still being present. I’ve lost one and a half of the 3 chins I had when Charlotte was delivered. My kidneys shut down immediately after the operation and thankfully they kick started themselves shortly after, otherwise we would have had to have placed me on a dialysis machine. My liver function showed contradictory recovery results, but it was established that the paracetamol I had been prescribed for pain management, was counter productive to liver recovery, go figure. My blood pressure took a while to start stabilising and dropping, so I’m on a month long course of medication to assist in reducing it. The odd rash I developed from the mystery allergy I got during my incarceration is also healing. Yesterday I was given permission to give up my sexy compression socks!!!!!!! The ten thousand needle marks are also beginning to heal, those are located predominantly on my ass and thighs, where the numerous Steroid, Buscopan, Anti-Nausea, Anti-Clotting and whatever else was placed in my system.

Overall recovery is slow, I’ve got to recover from HELLP syndrome, which is something that can develop in severe cases of Pre-Eclampsia, my caesarean was also not a standard because we had to deliver so early in pregnancy, the combination of medication that I was on (or a newly acquired allergy to seafood) or a combination of both, caused a lovely angry rash all over my body that has now dried up, leaving me to look like an elderly European tourist that has turned to biltong while tanning on our beaches (you know the look). I still have acne all over my chin and an intolerance to my former cosmetics, so there’s no hiding it. But I’m alive, Charlotte is alive, I got to go home to my husband and family and in the near future, we’ll bring Charlotte home. Coming home was overwhelming, at one point I felt as though that would never happen, I don’t think I made it 2 steps away from the car before I dropped onto the driveway and wept, and then got showered with love from our 4 beautiful woofs. I’m not the same person I was when I was admitted, but I’m alive and I’m recovering slowly. And now you’ll have to excuse me as its 5pm and it’s time to transform back into Daisy the Dairy Queen and get milking for my child who is developing a serious appetite and is out drinking my supply!