‘Congratulations! You can take your baby home!’

Bringing Arjun home was so frightening. We were allowed to take hime home on a ‘phased’ return. This is when you bring your baby home for SCBU intermittently so that you and baby can acclimatise to being home especially of your baby is on oxygen, tube fed or has had come other medical concerns.

When we brought Arjun home on this ‘phased’ return he had still got the NG tube in his nose. It was so scary. We were taught how to feed him via a syringe, held at a certain height above Arjun so that gravity would move the milk directly into his stomach. You had to be really careful, hold the syringe too low and the feed would not work; too high and you void drown his stomach which would result in him vomiting (he suffered from reflex anyway). Arjun’s feeds had to be thickened with a special thickening agent called ‘Tick and Easy’. It was like wall paper paste by the time you had added it to his feed.

Mother’s Day in Hospital

On two separate occasions I have spent Mother’s Day in hospital and I can tell you it doesnt get any easier. It was much more harrowing when Simran was in Neonatal Intensive Care fighting for her life. Simran was born premature at 29weeks weighing a mere 1lb 11oz. She weighed less than a bag of sugar. She was in hospital for three months in total. Arjun was in SCBU for my first mothers only four hears earlier.

Mother’s Day

My first Mothers Day was painful, I never imagined stealing gentle touches through a glass wall, fighting my way through a tangle web of wires, bleepers and feeding tubes, I never imagined sitting in a feeding chair watching my precious newborns chest heaving up and down to catch an artificial breath. To sit in silence watching; mutely praying for a sign that they would flourish, that they would survive to stand in the glistening summer sun and inhale a deep breath of air filled with freshly cut grass and blossom. I recall sitting for hours patiently by their crib side wishing that Arjun would make a sound or that Simran would open an eye to see me. The irony is that it was only a weeks before Mothers Day that we were informed that Arjun was blind, but with Simran we still did not know. Internally my heart was in agony. All I wished was that the gift of motherhood bestowed on me was not in vain, that it would not be snatched away from me like the cruelty of war; my newborns would be strong enough to fight on in their personal battle fields like the soldiers they are. There were times when both Simran and Arjun were almost defeated (on more than one occasion) but both stood up to (literally) live another day ; both still here.

I know that Arjun still has his battle and that at times desperation and despair consumes us as parents, but, on Mothers Day each year I hold him tight in my arms, against my chest so that he can hear my heart beating in time with his, in the hope that he knows that I am his mum and that I am always here for him, even on the day he takes his last breath, in my arms and not alone. I will never stop silently praying that one day a miracle will  ‘make him better’, or that when he dies his soul will rest in peace, nor will I never not cry on Mother’s Day for the son I have lost as I hold him in my arms.

A Mother’ Day gift

In NICU and SCBU the staff do their best to make Mother’s Day special. There is the special time you are allowed an extra lengthy cuddle with your baby; a moment treasured forever, moreso when your baby is still hooked up to wires, cables and oxygen (CPAP). I have two extremely cherished momentoes ; homemade cards with their tiny footprints.

The nurses had taken the time and patience to paint and imprint on to cards their precious prints.  It was one of the most treasured memories and tokens I still have safely wrapped away in their memory boxes.

It is for this reason that I have take to trying to deliver something to SCBU and Children’s Ward at Harrogate Hospital on Mother’s Day when I can. This year I delivered flowers donated to our charity ‘The Rainbow Fund’ by Asda.

http://www.therainbowfund.co.uk

Simran and the nurses @Harrogate Hospital

It is a privilege and honour to do this as well as having the opportunity to speak to mums on the ward who will spend Mother’s Day sitting in the nursery wishing that their newborn will be well enough to go home with them for the first time.

So, today on Mother’s Day, I want to tell all those mums in hospital sitting by the side of their newborn that all will be OK, that your journey will be unique but it is your journey and you will find your own way through it, that no matter what, your bundle of joy will lead you to the light and that you will all flourish in your own way.  So wear your badge of motherhood with pride and honour.

You are all amazing.

LAST MINUTE MOTHER’S DAY (in and around Harrogate)

We are very lucky in Harrogate to have some amazing local companies who can offer some great Mother’s Day gifts. Here are my Top 5 gift  last minute ideas for this year.

No 1

My favourite is ANY fragrant Candle from THE HARROGATE CANDLE COMPANY. This exquisitely handmade candles are beautifully scented, they only contain blends of pure essential oils (rather than synthetic fragrances) which have gone through rigorous testing and sampling to ensure that each fragrance is as pure and rich as possible.

They burn for hours and are definitely a mist have for any home.

The Harrogate Candle Company Handmade

The Harrogate Candle Company sprays and diffusers

No 2

H2k of Harrogate is another Harrogate based beauty and skin care range. I had the pleasure of being gifted a PEDICURE for my birthday last and I would highly recommend their range. Currently they have a mother’s DAY deal.

As a special treat, we are offering you a FREE 200 ml Calm Face kind & soft cream (paraben & Sulphate free) on all orders over £30.00 !!

No 3

Why not take your mum to FODDER for lunch or brunch. This is real favourite for me and my family. Fodder have an amazing Mother’s Day lunch, ranging from a full Sunday Lunch to a sharing platter; not to mention their delicious desserts and pastries.

Fodder Harrogate

Cakes by the Cake Lady

Light Farmers Lunch

No 5

If your mum is a real fitness fanatic, or just enjoys the little luxuries of a neat fitting pair of leggings, then why not head over to FIT HARROGATE on Cold Bath Road.  The best bit is you buy her a gift voucher and she can shop to hearts content.

Fit Harrogate sell top class fitness gear for Men and Wome

Gift Voucher’s for Mother’s Day

“when he cried there was no sound just his struggle”

NGT

You must breast feed. Breast feeding is best. Breast feeding encourages bonding and prevents Post Natal Depression.

Ok, so these are a few of the keynote messages and mantra echoed by NICE, doctors, midwife, mummy bloggers and pretty much any literature you pick up pre and post birth. Well I am here to tell you this is not always the case. Breast feeding is a privilege I was never able to fulfil. A privilege that I was denied, not through any personal desire not to breast feed but simply because both my son and daughter were incapable of doing so.

No one prepares you for this battle.. Feeding your baby is fundamentally a primitive instinct; your baby cries, you feed it. Well, with a child who is either premature  (Simran 29 weeks) or born with complications such as Arjun, feeding becomes a medical and personal battleground.

It wasn’t like I didn’t produce milk, in fact I produced copious amounts of breast milk,  at one point I had considered donating it to a milk bank. My breasts would swell and leak, but I could not breast feed. Arjun was hooked up to a machine that gave him continuous ‘ feeds’ or what the nurses called ‘bolus feeds’, this would deliver ‘food’ directly into his stomach, bi- passing the mouth and oesophagus, requiring no sucking motion. This is not uncommon in premature or sick babies, however with Arjun it was a little more than the norm.

He actually had no sucking reflex.

The doctors were becoming increasingly concerned that he was not responding to anything, he just lay there, motionless except for the vomiting and bowel movements. They suspected that he would never have the instinct to swallow or chew.

It was amazing how quickly we were trained to remove and replace his Nasogastric Tube or NGT; feeding tube. It is a very thin plastic tube that is pushed through the nasal cavity down the throat and directly into the stomach. You the check its’  correct location by drawing a syringe of fluid (stomach acid) via the tube and checking the pH balance levels. If it is not the correct pH then you start again, otherwise you are ready to start feeding via the tube.

The first time the nurse showed us this, it was pretty horrific more so as it obviously hurt him and when he cried there was no sound just his struggle. It was me who trained to do this, Dav found it tough and if I recall I don’t actually think he ever changed it.

By now the doctors were convinced that he would never suckle, but my instincts said he would. I was determined that he would not have surgery to insert a ‘peg feed’ into his stomach. This would involve an artificial valve placed directly into his stomach, from where we would pump special food to sustain him. There were clear complications with this, not to mention the extreme emotional distress for us. I was determined to get him suckling.

I tried everything.

For 2 months I sat with Arjun in the little room from 8am to 9pm, not leaving his side whilst Dav went to work. I tried all sorts of ways to get him suckling; putting my finger into his mouth and rubbing the roof of it to encourage sucking motion, dummies, plastic things from the speech and language therapists, a dozen or more different teats delivered to the hospital by different company reps, every range stocked by Mothercare but to no avail. The failure as a mother consumed me further, the thought that once again I was failing him and myself. That once again the mourning for the child I thought I was giving birth to was taken away through my own failures.

Feeding Arjun; breats milk and bolus feeds

NICU at Leeds General Infirmiry

 

It was only through the genius of luck that one of the nurses suggested a NUK teat. To be honest I had never heard of NUK, but it worked.

NUK Teats http://www.nuk.co.uk

Nuk Teats- saved Arjuns life

The day we were scheduled to have a meeting with all the professionals involved in his care so far, Arjun was in his room feeding, not via NGT but with a NUK teat. We were far from out of the woods but this was a definite positive step. You see, the meeting was scheduled to pretty much force us to give Arjun the feeding peg. I was against it, Dav was unsure, but everyone in the room was there to tell us he had to have the peg and that we had no choice.

This is my only positive memory.

Some Helpful sites:

‘He will remain in a vegetative state for the rest of his (short) life’

‘He will remain in a vegetative state for the rest of his life and you will be his sole carers’

We look at the doctors face, blankly.

‘Do you have any questions?’

We say nothing.

Following 24 hrs of sheer horror the nightmare then escalated to an apocalyptic tsunami.

Dav had wheeled me down the long disinfected pungent corridor of the hospital to the Neonatal Intensive Care Unit (NICU) at Leeds General infirmary to visit Arjun as he was hooked up to life support machine. We thought he was going to be ok. We thought at this was just routine after such a difficult birth and that he would be discharged once the excess fluid (hyrdrops) had been drained. We were so wrong.

It soon materialised that he had had a major brain injury. His brain was drowning in blood. He was literally being killed internally by his own organ; his brain.

A few medical facts; Hydrops occurs in a small percentage of the worlds population, with only 15% of those born with hydrops actually surviving. Hydrops is when the tissues in the body is filled with fluid (oedema) ; the body appears to be like a water balloon, waiting to be popped. The only thing is, this cannot happen, instead the fluid either is drained or your organs drown in the fluid.

Non-immune hydrops is the more common type of hydrops. This type includes all other diseases or complications that may interfere with how your baby manages fluid. This is what Arjun was diagnosed with. His prognosis was not hopeful.

Arjun’s body was drained.

It is unclear whether he had the brain injury prior or post birth, or once the fluid had been drained.

His head circumference expanded over the preceding 48 hrs as the blood and fluid from his brain haemorrhage consumed his brain cavities destroying the grey matter like maggots eating away at an apple. His fontanel bulged like a water balloon, to touch it slugged and squelch in an inhumane manner, all the while Arjun fought for his life and every breath whilst the life support machine pumped away. I will never forget the beeps, flashing lights and alarms of NICU. The manner in which the nurses and doctors ignored some of the beeps whilst as an onlooker you panicked and frantically searched for suitable explanations for all the flashing lights and noises. I suppose for the nurses and doctors these became like white noise; for parents they were deafening sirens. It soon became clear that everyday Arjun was deteriorating, each brain scan revealed further damage. There was nothing that could be done.

It is pretty amazing how the protective mechanisms kick in. It was even more remarkable how Dav took the reins and protected not only Arjun but me. I was mentally deteriorating. My body could not cope with the changes, the surgery and the hormonal imbalances, but to exacerbate the feelings further I was falling deep into a depression that would consume our lives for ever. I began to reject Arjun, my motherly instincts were nowhere, all I could do was the physical, change his nappy, cleanse and bathe him. I felt very much like a failure, that somehow I had caused Arjun’s fatal injury and that all I was good for was pumping my breasts for milk.

By now I was feeling more and more isolated, unable to truthfully reveal my inner pain and dying emotions. The black cloud had truly taken hold and I was alone with it.

Meanwhile, Arjun  was slowly weened off life support and made his journey through each step out of The Peter Congleton Unit at the LGI. It was a little like graduating. Firstly he moved from NICU to HDU then to the nursery section.( I make this sound so easy and pain free but it wasn’t, so many medical issues had arisen that I am not sure I could jot them all down). This really meant nothing to us because we knew he wasn’t coming home for months, he would need to be transferred to Harrogate Special Care Baby Unit first.

To be honest, the doctors had hinted that we would never take him home. The doctors had actually told us he would not survive.