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!!!