Failing as a mum? 

So these past few weeks I’ve really struggled to feel anything but confident about my parenting skills. I know from speaking to other parents out there that this is a common feeling to have at times.

Your baby died

You see the struggle for me is when the rational voice in my head tries to change my mood by telling me that I’m a good mum. Another voice reminds me that my first baby died didn’t she and maybe it was because she wasn’t looked after well enough. Perhaps I should have tried harder or done something differently?

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Violet & Arthur’s grave

Whenever my rainbow baby is ill all these feelings get dredged up from deep down. All these fears and bad memories or nightmares from hell (also known as Manchester Children’s Hospital) as I call them.

Pneumonia

If my rainbow baby is diagnosed with a chest infection or heavens forbid pneumonia then even more negative memories and emotions appear as that’s what Violet died from.

When I took our toddler to the GP a last week we saw a different doctor than usual and she looked at the on screen records looking puzzled asking does she have a lung disorder as she’s here a lot to get her chest checked. Our usual doctor insists we bring her to be checked whenever we are remotely concerned but obviously this lady didn’t get the memo. I really think they need to have something that flashes up on screen to say “her sister died of pneumonia” as I then had to explain no she doesn’t have any lung disorder we are aware of and to rationalise why we’re so over cautious bordering on paranoid. When I said her sister died of pneumonia I didn’t even get the usual “I’m sorry to hear about that” instead I think she was a bit embarrassed as I think she initially thought I was just a paranoid over protective mother.  She listened to baby’s chest and agreed it sounded crackly so prescribed some antibiotic.

Nursery

Roll on a few days and baby seemed much better thankfully so we sent her back to nursery.  Around lunchtime I got a phone call to say she was breathing rapidly and sucking in below her ribs so really serious for a little one.

Hospital

I collected her from nursery and we drove straight to hospital A & E, where the triage nurse said she thought we looked familiar.  When we explained that our other daughter died in the hospital she immediately said “oh my god you’re Violet’s parents”.  It turned out the reason we recognised each other was that 3 years ago she worked on the ward where Violet died and she had looked after her the night before.  She welled up and I started crying so it was a great start to a possible hospital admission.

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Reading books in A & E

 

Violet

Thankfully because the nurse remembered Violet it was then an easy job for me to insist she asks for the on call respiratory specialist to consult and she obliged immediately paging them for us. Anyway they did an x ray of her lungs and saw she had a possible viral and bacterial infection on them.  They gave us more antibiotics and said as long as we monitored her for any further changes then we could take her home.

We were only home for a few hours when we noticed her breathing had gotten rapid again, around double what it should be, so we knew she was getting worse and phoned an ambulance, which is what we’d been instructed to do if she got that bad.  The operator explained that the ambulance would take 3 hours to arrive so given our proximity to the hospital we would be better driving her there ourselves.

Back again

We arrived back in A & E and were told they would be admitting her for monitoring overnight, as her oxygen levels were erratic.  It felt like I was at the gates of hell and having to enter it once again.  I explained this to the hubby and he laughed saying “pleased to see you’re not being over dramatic then” lightening the mood as always!

There are no words to describe how it felt being back in that hospital again sitting and sleeping (who are we kidding more lying with one eye open and jumping up every time she coughed!) at the side of my baby’s cot bed. All the memories I had suppressed of my time there with Violet came back along with my scepticism about what we were being told.  Luckily this time we had the top respiratory consultants looking at her x ray and examining her too so I felt more confident with what we were told.

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Sleeping like a baby 

Valentine’s Day

I got the best Valentine’s Day present in that we were discharged from the hospital and once again told to monitor her.  Fingers crossed she seems much better now but it’s always tough with little ones when they can’t tell you how they feel.

Here’s hoping she recovers quickly and we never have to return to that A & E again.  Although I plan once she’s better to take some more books in for the children in A & E as quite a few we looked at reading with her were ripped and damaged.

We’re still exhausted and reeling from the adrenaline here and hoping she’s better soon.  I take my hat off to those people, especially a dear friend of mine, who have children with long term illnesses who are often in and out of hospital. It is really tough to have to try to parent while doctors and nurses torture your child trying to make them better.

Thanks for reading.

Big love

Sarah

Always Violet Skies

You might enjoy these other articles –

Grief advice

Four years a mother

Reflections on the decade that was

Sleeping like a baby?

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Sleeping like a baby what an ironic phrase considering most babies I know hardly sleep anyway I thought I’d write a little post about when you move your baby into their own room.

Moving baby into their own room

This is something most new parents worry about and then once they do it most say how much both they and their baby’s sleep improves.  This was certainly the case with our first baby Violet.  She actually started sleeping through occasionally once she was in her own bedroom away from daddy’s snoring.

A sleeping Aurora who prefers to be cuddled as she sleeps - Violet Skies
A sleeping Aurora our sleeping beauty in name only – Violet Skies

Well now as a parent of loss I can tell you this is extremely difficult and no now she’s in her own room I don’t sleep better in fact my sleep is worse. 

Monitors

Number one I’d like to say to those people marketing webcams and tablets as being “just as good as a baby monitor”. They are no good for a parent of loss. The fact they repeatedly pause to reset or reload is a nightmare for a mother who subconsciously listens to her baby breathing through the monitor while she sleeps. When it stops to reload my subconscious triggers me to wake with a jolt. My brain telling me my baby has stopped breathing. This happened 10 times during the first night she spent in her own room. Add into that the three times she actually woke up too then I think I got approximately an hours sleep.

This amazing first night triggered the purchase of a proper baby monitor through amazon via same day delivery so night number two was better. Just a shame baby then had a cold so awoke 6 or 7 times in the night and awoke to start her day at 5am.

Here’s hoping it gets easier as we’re very tired parents but you know I don’t like to complain. I know I’d rather zero sleep than zero baby as I’d give anything to have my first baby Violet back.

A sleeping Aurora who prefers to be cuddled as she sleeps - Violet Skies
A sleeping Aurora who prefers to be cuddled as she sleeps – Violet Skies

Anxiety

My counsellor tells me it’s normal for a mother to be anxious and all mums have anxiety, to some extent. It’s just that most haven’t then experienced the worst scenario ever playing out in front of them.  Most mums when someone tells them the odds of something happening to their child are really slim they can rationalise. They can’t then turn round to say well those odds have happened to me in the past.  Unfortunately my experiences now compound my natural mummy anxiety especially at night.

How did you get on with moving your baby to their own room? When did you do it?

Love Sarah x

Always Violet Skies

You might also find the following posts interesting –

When you get your rainbow what then?

Mothering after loss

Making over Motherhood

Making over Motherhood

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This week is Maternal Mental Health Awareness week and I have to be honest that I’ve struggled with what exactly to write. Although I am a mother and sometimes have struggled with mental health, I’m not what you would call a “normal” mother but then I guess no one is truly “normal”.  So for the last day of Maternal Mental Health Awareness Week here is my story of motherhood.

Me with rainbow baby Aurora in Mangawhai New Zealand - Violet Skies
Me with rainbow baby Aurora in Mangawhai New Zealand – Violet Skies

Post-natal depression

I have friends who have struggled with post-natal depression. I know friends whose mother’s have had it 40 years ago when it was dismissed as minor and called the “baby blues”. The difficulty I have is that motherhood for me has been a real rollercoaster.  The struggle for me is writing about my own experience without seeming to diminish anyone else’s experience of post-natal depression.  I have had friends tell me that they feel they can no longer share their tales of depression or worries as they think they seem minor compared to what I have been through. They have said that actually I make them feel worse about themselves because they should be happy when they compare their lives to mine.  Well that doesn’t make me feel guilty, bad or worse at all for sharing!

So apologies in advance if my story of Motherhood makes any of you out there feel worse about your own situations. I don’t want to diminish anyone but hope that by sharing my story some of you who feel alone might feel less so.  

Normal motherhood

I have never had a “normal” motherhood experience.  I have not known what it is like to go into a baby scan at 20 weeks full of excitement and to come out elated with happy news afterwards.  Our first baby Violet was diagnosed with a heart condition at her 20-week scan.  Second baby Arthur was diagnosed with a serious brain condition at his 20-week scan resulting in a TFMR at 22 weeks of pregnancy.  Third baby Aurora luckily had clear baby scans all the way through pregnancy but we never entered a scan room full of excitement or even left elated afterwards. More we left smiling with relief that we hadn’t yet had any bad news.  Those were my three motherhood beginnings already a little different from the majority of mothers out there. You can read more about stress with a rainbow pregnancy here.

Violet’s birth

When Violet was born we had a natural induced labour as that was deemed the safest for her but she ended up being undiagnosed breach so I had a breach birth naturally with no pain relief.  I am still having counselling for that experience alone, never mind the on going medical treatment because of the wounds I sustained.  Violet was also transferred to Alder Hey hospital shortly after birth without me and at 4 days old she had open-heart surgery. It had only a 30% chance of success but she survived and the operation was a 100% fix.   

It was, at that point, the most stressful time of our lives and we were relieved it was over. We finally took a 2-week-old baby home from hospital with serious health needs. She needed specialist round the clock care, whilst her heart and rib cage healed up.  You can read more about Violet here. Despite her start she was a healthy little girl who had mild developmental problems because of her surgery and also issues eating solid food. We found that a challenge and extremely frustrating.  However she was extremely clever, musical and a happy little soul considering her start in life.  She was a joy to be around and made everyone who met her happy.  This summarises my first year of motherhood started off extremely stressful and finished happy.

WHAT MOTHER’S DAY REALLY MEANS
Me with my angel baby Violet in Cyprus. Violet Skies.

The loss of Violet

My second year of motherhood wasn’t anywhere near as good as my first!  Violet got sick and was admitted to Manchester Children’s Hospital. We sat by her bed for weeks where she finally died, suddenly from a rare form of pneumonia aged 15 months.  We had to wait nearly 2 years to find out why she died, as the autopsy was inconclusive. We had to endure a coroners inquest too.  You can read more on this here.

First rainbow baby

My third year of motherhood I think was possibly the most challenging as this year we enjoyed a second pregnancy. Until the fateful 20 week scan and then, whilst still grieving the loss of our beloved daughter, we lost our son Arthur too.  You can read about it here.

36 weeks pregnant with Aurora at my friends wedding. Violet Skies.
36 weeks pregnant with Aurora at my friends wedding. Violet Skies.

Second rainbow baby

My fourth year of motherhood is still in full swing and I have to say it is by far the best yet as we have our gorgeous rainbow baby Aurora. Named after the goddess of the dawn she has brought light back into our darkness. She certainly does this as she’s a bright, cheerful, smiley little girl.  

People looking at our social media feed might be forgiven for thinking our lives are pure happiness now but as anyone who has suffered child loss will know they aren’t.  The happy days are still tinged with sadness, as to what should be and what we are missing. 

For example the other day I was “subjected” to a conversation by other mothers talking about how lovely it is that their three year olds and their babies play together. They interact now all the time. Well that’s what we should have Violet as a big sister playing with her younger siblings. Instead Aurora will probably grow up alone.  Having grown up with a brother and sister that thought alone makes me want to cry. My siblings are still close to me and we remain an important part of each other’s lives.

Brother & sister – Violet & Aurora’s gorgeous cousins

Counselling

I still have regular counselling to help me to try to deal with everything as I have horrendous nightmares on a regular basis. Sometimes extreme anxiety and times when I feel sad.  I also have PTSD (read more here) caused by my first birth experience, my daughter having open-heart surgery and also from watching her die. I am told all this is “normal” for a grieving parent but it does draw parallels with how other mums say they feel who have post-natal depression. Whilst I don’t know what it is like to have a relatively normal experience of motherhood and still feel depressed, I do understand and have lived through all these feelings on a fairly regular basis.

Support needed

I feel that lots of health visitors also need more training and guidance for how to deal with mothers who perhaps are slightly more fragile mentally than others.  This is in light of a recent experience I had with a health visitor who reduced me from a confident mum of a rainbow baby to a crying anxious mess in the space of one baby weigh in session.

I also feel that more support should also be given to fathers as often they have no support at all, especially after the loss of a child or after they have witnessed a horrendous birth.  They can suffer PTSD too.

Sending all mothers (and fathers) out there lots of love as parenthood can be tough whether it is simply sleepless nights. Or sitting by a sick child in a hospital bed or crying at a graveside.  At the end of the day everything is relative to your previous experiences too.  I thought the toughest thing I had to endure was watching my child sick in hospital that was until they died. Motherhood can be beautiful and wonderful but it can also be extremely cruel. 

Big love,

Always Violet Skies x

You might enjoy these blog posts –

More of a mother – does a natural birth make you more of a mother?

Somewhere after the rainbow – what happens if you lose your rainbow?

Mothering after loss

Guilt when a mother of loss

Mothering after loss

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This week has been a really challenging one for me because my baby has been properly poorly for the first time.  Yes we’ve had teething pain, the odd tummy bug and reflux issues but this time she has a very nasty cold bug that’s affected her chest too.

Sick baby

Now you might be thinking having to look after a sick baby is hard for any mother or parent and yes it is but when you’ve previously had a baby get sick and die it makes the experience all the more stressful.  Especially when your other baby died of lung problems and now your new baby is choking and coughing in her sleep.

The doctor has said it’s just a cold so you’d think just give the child some calpol and vapour rub and get on with it.

Well just getting on with it is easier said than done. My hubby was also away so I was flying solo too (hats off to all those single parents out there you deserve medals!).

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Poorly little girl but check out that fabulous curl!

Sleepless in Manchester

The reality was that I didn’t get any sleep at all. Part of the night she was awake distressed after coughing and wanting cuddles. The rest of the night she slept in fits and starts repeatedly coughing and choking in her sleep. Cue mummy leaping out of bed every time. Sprinting across the room to lift her head and rub her back trying to ensure she didn’t breathe any phlegm back into her lungs.

Of course I also put a folded blanket under her mattress to ensure she was tilted to help with congested breathing, a tip we learnt from caring for her sister.

Holding baby while she sleeps

The following day aurora was still not herself so whilst most mummy’s might have tried to nap whilst baby did. I held her propped up while she slept so preventing her from choking on any phlegm and ensuring when she did cough that she definitely coughed or vomited outwards. Her sister they think breathed vomit into her lungs so this is now our worst nightmare for Aurora.

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After a loooong 24 hours of hardly any sleep and at last she sleeps!

Rainbow baby’s are difficult

You might wonder why I’m even taking the time to tell you all this. Whilst I don’t want to over share or make anyone feel sorry for me. I’m thankful for my baby and don’t want to complain. Lots of people think once you finally get your rainbow baby then that’s it job done. Well it’s only just begun really.

The stress and worry now Aurora is ill is unbearable as when I do manage sleep I get flashbacks of her sister, Violet, in hospital and immediately after she died.

What are the chances?

Most parents will stress and worry about their babies for their entire lives, that bit isn’t a new phenomena, but I guess most believe their child dying won’t happen to them. These things always happen to other people. Well when the unthinkable has happened to you already then you’re more likely to worry that it will happen again.

I’ve seen what hell looks like and I’ve experienced unspeakable pain.  I have sat by the side of a hospital bed for days and nights on end.  I have had to hold my screaming baby down while she is tortured by doctors with needles and tubes all trying to do their jobs.  I’ve stifled back my own crying and sobs so as not to distress my poorly child.  I’ve told my crying child that all of this is to make them better and lied that they will be ok.  I’ve begged and pleaded with emergency intensive care teams not to give up on resuscitation but nothing is worse than the nightmare of your baby actually dying.

Living nightmare

You can’t un-see or forget your dead baby’s face. How their cold lifeless body felt? How clammy the skin? How soulless their eyes? Almost like a doll has been made of them. They don’t seem real somehow.  I can tell you that hell is watching your child in pain, being tortured and then them die.  Then you have to arrange their funeral before somehow going on with your life.

I never ever want to go back there again thank you.  If to ensure that doesn’t happen it takes staying awake to check Aurora throughout the night then so be it.  If I have to hold her while she sleeps then I will do.  Anything I need to do I will do it.

I also keep having to repeat the same mantra over and over in my head.

“This is a different baby. A different person. She isn’t the same. ”

To all those parents out there with rainbow babies or those caring for children who are sick my hat goes off to you too.  Sometimes it’s tough being a parent.

Big love

Sarah – Violet Skies

Have you read these other posts about Rainbow babies?

When you finally get your rainbow what then?

Distraction number 1

Luck, God or just random shit