A friend of mine recently asked if I had been sent a letter saying I was high risk because I was self isolating from the start 5 weeks ago. I haven’t. Officially I am classed as low risk despite having a heart operation at the end of last year. My daughter who also has a congenital heart issues is classed as low risk too.
Regardless we have been isolating to the maximum for the last 5 weeks and will continue to do so.
I was told once before by medical “experts” that a daughter of mine should be treated as normal and wasn’t at increased risk of anything. She wouldn’t have any more reason to die than anyone else. She died of the very thing they said not to worry about and the coroner said she has been at a greater compounded risk, so forgive me if I don’t trust the medical “experts” now especially given this is a new situation and a new virus they don’t really understand.
Make a mistake once…
and it becomes a lesson. Make the same mistake twice and it becomes a choice.
My mistake was believing the medical experts when they said to treat my heart baby as a normal child. She wasn’t a normal child.
Not no risk
I’ve suffered the pain of losing not one but two children, so forgive me if I don’t want to risk losing another even if that risk is a low one.
Low risk means there is still a risk it’s not a no risk situation. No one is at no risk of the corona virus remember that.
Is any risk worth it really?
What do you think?
Are you willing to gamble with these very high stakes? I am not.
Stay safe everyone. Hold your nearest and dearest close.
It makes me sad during this time of isolation that my little bubbly outgoing sociable girl often seems lonely desperate for the company of other children. Yes she has me and her dad with her but it isn’t the same as someone a similar age.
When she sees other children going passed our house on their bikes on the way to the park for their exercise or animatedly chatting holding hands she bangs on the window waving to them shouting hello. She wonders why these children are allowed to play together but she cannot join them.
It’s hard to explain to an almost two year old that those children are siblings so they are allowed to play together and visit the park with each other.
She should have a big sister
It makes me so sad because by rights she should have an older sister to play with. A big sister to run around the garden with and who would be able to relate a little more to her, rather than the two adults she finds herself spending 100% of her time with.
Violet would have been able to look at books with her, play on the slide in the garden and they could have sat together to create sculptural masterpieces from play doh. Even just lounged together on their giant unicorn to watch TV.
Don’t get me wrong I grew up with siblings myself so understand all about the arguments but you know what I would like to have to break up those fights and solve the disputes rather than try to cure lone tantrums about wanting to see others.
Until now whenever I’ve gotten upset about her not having her sister here to play with I’ve taken comfort from the fact she has cousins she’s close to that she can grow up with. This current situation that stops her from seeing her cousins and indeed her friends reminds me how alone she really is. I was lucky enough to grow up with a brother and a sister.
Yes we can video call but she’s not overly interested in that. If we show her videos of her friends and cousins she watches them over and over finally tantruming when we stop her watching for the 100th time.
After seeing friends from a distance waving & chatting to them from the end of the driveway or over the fence she then has a tantrum because she’s not allowed to play with them. She’s even gotten her nursery bag taking it to the front door in an attempt to leave to go play with other children.
I fear that when this is all over our vivacious little girl might be a shy and reserved wallflower who has forgotten how to interact with her peers or other children.
A close friend of mine who grew up as an only child once told me she wanted to have more than one child as growing up as she dreamed of having a sibling to play with. She said she used to feel envious watching me with my brother and sister wishing she could have the same. I never really understood what she meant until now.
A new kind of grief
Watching my little girl cry and sob and tantrum because she wants to play with the children going passed our house breaks my heart. Even more so that by rights she should have at least a big sister with her right now and actually she is the youngest of three.
It breaks my heart it really does. It also reminds me of the difficult conversations that are coming in the future when she wants to know why she’s an only child and what happened to her older sister and brother.
I recently came across someone else on instagram who is going through a very similar thing with their daughter and the isolation situation so I thought it was important to share this in case it might help even more out there to know they aren’t alone in this.
Always Violet Skies
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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?
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.
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.
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.
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.
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.
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.
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.
So today in 2018 was our son Arthur’s due date but he was born sleeping on 1stSeptember 2017. I don’t therefore know what you call today “a scheduled birthday that should have been”??? A Due Date Anniversary?
It feels odd being sad today because if all had gone to plan and he had been born today happy and healthy then we wouldn’t have our little girl Aurora as she was also born later on in 2018.
It is a confused situation entirely. Arthur doesn’t even legally exist as he was born sleeping at 22 weeks old so 2 weeks earlier than the legal requirement for human life however if he had drawn a breath at birth than he would have lived so then would have a birth and death certificate. He never drew breath so he has neither certificate.
Legally he never lived
Even though in the eyes of the law he didn’t exist to us he did. I felt him moving constantly inside me kicking over and over. We saw him somersaulting on scans and constantly moving even if no one else did. We knew him a little and met him whilst he was sleeping. He looked like a miniature version of my hubby with a thick head of dark brown hair. His name sits now underneath his big sisters name on their headstone at her grave. We interred his ashes with his sister Violet so she can look after her baby brother.
Their baby sister is continuing to light up our lives here living up to her name “Goddess of the Dawn” and certainly keeps us on our toes.
Rest in peace my little rocket man; keep kicking those legs making those rainbows up high.
November is here at last and I say that not because it is a favourite month but just because October is finally over. This year it was particularly tough.
I was supposed to be visiting Lisbon last week for my mum’s birthday treat but had to pull out and left her with my sister as my little rainbow baby was poorly so I couldn’t leave her at all. The illness of my daughter combined with Baby Loss Awareness Month was the main reason October was super stressful and a tough month for us.
A poorly rainbow
Our rainbow baby was the same age as Violet was when she died and she contracted pneumonia twice, which was exactly what happened to Violet before she was admitted to hospital never to return. This is why this past month has been so fraught for us resulting in hardly any sleep; stress levels beyond belief, emotional meltdowns on a frequent basis and the consumption of a vast amount of comfort food/drink on a regular basis.
We also managed to still juggle work commitments, the organisation of a surprise birthday party for my mum and even had a drink out baby free for an hour or so for a friends birthday before hot footing it back to soothe a poorly baby.
Health wise my daughter is luckily recovering well but we’ve decided to keep her away from nursery until the new year at the earliest to allow her lungs to fully recover and to ensure her immune system is back to full strength too. We will continue to juggle work commitments and childcare thanks to the support from family and friends. There’s no way we will risk losing this little girl too.
New parenting territory
It sounds strange but today I feel a little relieved because yesterday our rainbow reached the exact same age Violet was when she died so today she has surpassed her sister’s age by one day. It makes no logical sense why I feel relief at this but my stress has lifted slightly.
Is this normal with rainbow babies? Anyone else feel this way too? Or am I just odd? Please let me know.
So now we’re on totally new parenting territory as we have the oldest living child we have ever had and it’s all fresh new sailing for us from now on.
These last few weeks have been especially difficult for us as our rainbow baby is sick. We had to take her into hospital where she was diagnosed with pneumonia, which is what her sister died from. Back at home now luckily and she’s responding well to antibiotics but it is unbelievably stressful anyway without our history with her sister.
Lack of control
I realised a key reason for the stress of having a poorly child or loved one or heaven forbid their loss is the lack of control over the situation (unless you’re a murderer of course but that’s a different story!).
The fact you had no control in the end over whether they survived or not. You did everything you could possibly do but even that wasn’t enough and it is the acceptance that at the end of the day we really don’t have control over these things.
When our children are sick, again, it is the control issue that makes us super stressed. We can do everything we can possibly do to look after them. Give them antibiotics, fluid, pain relief, and take them to the doctors or to hospital. Listen to the “experts” and follow their guidance. Other than that there isn’t much more we can do. We are powerless and have to do our best then simply hope.
Regaining control on life
I think that is why after the loss of Violet and then Arthur doing things I have control over helped me to regain a little of my sanity.
Managing a house renovation and extension project was something I could control. Rehabilitating a German Shepherd from being a working dog into a family household pet again I could do and get some comfort from. Setting up a fund in Violet’s memory and organising a charity ball again was something I could control and work at organising. We have now raised a total of £42,860 for Alder Hey Children’s Hospital.
More of a control freak
Yes I admit I am probably more of a control freak in some respects than perhaps other people but after speaking to a few others who have had to endure looking after sick children or unfortunately baby or child loss it is this loss of control that is a tricky one to deal with.
My advice is to try to do other things you can control to try to balance out those things that you simply can’t.
Big hugs and lots of love
Always Violet Skies xx
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So our little rainbow baby had her one-year inoculations the other day so we had a few days of high temperatures, a distressed clingy baby, waking every half an hour over night and whimpering in her sleep. It can be tough as a parent with a sick or teething child anytime but if you’re a parent who has experienced child loss then this can feel like a sick version of Groundhog Day.
Our first born Violet died suddenly at 15 months old and looking back her health slowly deteriorated over her final months so slowly we didn’t really notice it until it was almost too late and then it was too late.
Our rainbow baby, Aurora Violet’s baby sister is now approaching 13 months old so we are ultra sensitive to any slight change in her behaviour, routinely checking her temperature and we whisk her to see the GP as soon as she coughs more than a few times. Over protective parents have nothing on us!
Violet in her final months started sleeping a lot worse than she did before and we assumed she was waking because of hunger but discovered on admission into hospital that it was because her oxygen levels were plummeting. Aurora is displaying similar sleeping patterns so we’re awaiting sleep study equipment to monitor and check her oxygen levels while she sleeps.
Our rainbow baby has an appointment with a top lung specialist too, even though as yet she currently doesn’t have anything wrong with her chest (that we can tell). It makes us feel better that she will be double-checked. You may think “what a waste of that consultants time if there’s nothing wrong with her” and someone expressed that to me.
Well her sister saw countless GPs, several paediatricians at two different hospitals, several accident and emergency consultants, a variety of different registrars at Manchester Children’s Hospital, with varying levels of qualification and experience. Yet not one of them managed to accurately diagnose Violet while she was alive. It wasn’t until after a full coroners inquest nearly 2 years after her death that we even found out what the issue had been. This top lung specialist was supposed to see Violet when she was in hospital but she died before he got around to seeing her and perhaps he may have diagnosed her or not we will never know.
So I’m not sorry in the slightest if by now playing the “my dead baby” card means that my rainbow gets the best specialist healthcare because you know what she and we bloody well deserve it. I have paid my taxes (as have my family all our lives) and we fully support funding the NHS which yes needs more funding today so babies like Violet don’t die in hospital while waiting to see a specialist.
Until you have been in our shoes and watched your child deteriorate, suffer and then die in front of you whilst no one has an explanation as to why. Then come object to me but until then I will stand and scream if I have to until I know my child is safe, healthy and happy.
If your child is ill too let me know as I’m happy to advise or scream for them too.
Maybe we didn’t shout loud enough with Violet? Maybe we didn’t kick up enough of a stink? Maybe I should have bundled her into my car when I decided Manchester Children’s Hospital weren’t doing a good enough job and driven her to Alder Hey hospital?
Well you know what this time if I need to then I bloody well will and god help any healthcare admin person who dares stand in my way!
Have you ever had to question healthcare professionals? During Violet’s short lifetime we experienced the very best of the NHS and the very worst too. What are your experiences?
Always Violet Skies x
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I was quite shocked by a conversation I had with an elderly lady when out and about with my rainbow baby. Perhaps she didn’t like the name Aurora but what do you think?
This lady stopped me in a supermarket to coo and ahhh over her asking as most people do whether she was my only one or not. I said no she is my third baby but unfortunately her sister and brother died.
The lady said she was sorry to hear that and what was her sister called. When I said Violet she remarked about how pretty that name was. Then she said “so is that what this little one is called then Violet”. I said no she was called Aurora but she did have her sister’s name as a middle name thinking maybe the lady had gotten confused or misheard me perhaps.
She then said “what was Violet’s middle name”. I said Elizabeth and she said “oh that’s a shame as Violet Elizabeth is such a beautiful name I’d have used it again”. I was stunned. Why on earth would I name my second daughter exactly the same as my first as though she’s a replacement? I was dumbfounded. I didn’t know what to say and just smiled then walked off.
Where has this come from?
Then I decided to do some research into why she even had this belief and discovered during the Victorian era when child mortality was very high then giving a child the same name as a deceased older sibling was in fact quite common, especially if the child had been named after a parent. If you look through archives you’ll often see multiple children with the same Christian name in a family. I assume perhaps this elderly lady came from a family that had done just this so she felt it was a normal practise.
Some people are weird
I also think that some people are just weird. I remember someone telling me that as a child her family’s dog was called “Ben” and today her family’s dog is still called “Ben”. There have in fact been 6 Ben’s altogether. To me that is very strange but even more so to do that with a child.
What do you think? Would you give all your pets the same name? Would you use the same name again and again for a baby?
Always Violet Skies x
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After travelling over 22,000 miles from UK to New Zealand and back via Singapore and Bali with a 7-month-old baby Violet in 2016. Then doing the same trip again with an 8-month-old baby Aurora this time taking in Singapore, Australia and Hong Kong too we now have some top tips for anyone flying with a baby.
Request a bassinet
If your airline is long haul then you should be able to request a bassinet for your baby which will mean you will need bulkhead seats so make sure you select these when checking in and choosing seats online. A bassinet will prove useful not just for when your baby sleeps but they can be propped up to play with toys too. Noise cancelling headphones are a great idea if your baby wakes easily (as modelled by Aurora in earlier photo!).
It goes without saying that you will have spare outfits for baby. Make sure you have extra clothes for yourself in your hand luggage near your feet. There’s nothing worse than having to sit covered in baby vomit for the entire of take off/landing plus then 30 minutes of turbulence because the seat belt seat is still on.
Sleep suits and onesies we’d recommend for flying plus a zip up fleece or dressing gown anything snuggly and easy to remove. Layers and press studs are your friends.
We’d recommend packing a cotton hat for your baby as airline air conditioning can be fierce. Surprisingly the vents seem to be above the bulk head seating so right near the bassinet.
If you’re on a long haul flight then a smaller change bag will be handier. We bought one that was a mat that folded out with room for 2 nappies, wipes and change of clothing. It fitted into the seat pocket so saved time and easy to grab in a rush.
Extra muslin cloths & baby carrier
Take the large ones as these are multi-functional serving as dribble wipers, blankets if baby gets chilly, a stand in change mat, sunshade or a scarf for mummy!
Pack a small sling or baby carrier in your carry on luggage as they are handy for airport transfers. Disembarking down plane steps safely especially if they are slippy without having to worry about holding a wriggly baby is priceless. Also they are helpful if your airline fails to deliver your stroller to the gate as promised.
If you are flying long haul and transferring on your journey then it might be worth investing in the use of an airport lounge. This can make a big difference when it comes to heating milk, food and changing your baby in a relaxed environment. Often lounge access isn’t too pricey either if you book in advance.
Some cabin crew will have the good sense to ask you if you’re travelling with another adult and if you’d like your meals to be staggered so you both get to eat by swapping baby duties. This is a great idea and why not ask if this is possible when you board the plane.
Hand sanitising gel or spray
These no water needed hand sanitisers are a god send when you are on an airplane and its difficult to access a toilet to clean up before food.
Toys, toys and lots of toys!
Again it goes without saying but the more you have for your little one to do the better. We had a set of toys and books easily accessible for on board the first plane. Then another set in our other carry on so we could swap them over for the second connecting flight so she wouldn’t get bored. The toys you can clip to a pram are best as you can attach them to the bassinet or airline seat belt so they don’t get lost under airline seats.
Finally I advise you to relax. Yes it sounds ridiculous to say this when you’re flying with a baby, possibly feeling totally stressed out like all evil eyes are on you the passenger from hell. Try your hardest to also make the journey as relaxing and as enjoyable for yourself. Your baby will pick up on your vibes so smile and see it as an adventure. Experience it through their eyes so the journey is exciting and new!
Now I’m no longer pregnant oh my word work and social events are a million times easier. Yes at a networking event, not looking pregnant, eventually someone will ask if you have kids but they won’t use the topic or babies as their opening line or icebreaker.
When you’re at a networking event, obviously pregnant, people you’ve just met will use the fact you’re carrying a baby as their ice breaker and ask you about it, which if you hadn’t lost children in the past and were enjoying a relatively worry free pregnancy then that might be lovely. However when you’re on your third pregnancy having lost your first child and then lost a second at 22 weeks gestation it’s a topic you don’t really want to chat to a total stranger about.
I avoided events
Lots of work contacts now I’m out and about again after baby have asked recently why they didn’t see me at lots of networking events, launch events, industry gatherings, conferences etc while I was pregnant and this is the main reason why. Yes sometimes I was genuinely busy or grieving but other times I really couldn’t face the fact I knew that strangers would ask me about my pregnancy with a big beaming smile on their faces. Clearly wrongly assuming I’m pregnant and so want to chat babies.
Knowing I’d have to answer the following questions over and over to at least three different people at events filled me with dread:
“How far gone are you?” “Oh so not long now. What’s your due date?”
Then either – “Oh I think you’ll be earlier than that as you’re huge much bigger than you should be” thanks for that I actually have more fluid than normal but I didn’t want to really tell you a total stranger that personal information.
“Oh really but you’re so small. Have you had a sizing scan?” Yes I have actually I’m having scans every two weeks at the Tommy’s clinic but again I don’t really want to go into this with a complete stranger. “Oh what’s the Tommy’s clinic you say?”…
I’ve seriously had both of these opposing size comments at the same event!
Or they ask…
“Is it your first baby?” No my third.
“Oh you’ll be an expert then. Glutton for punishment bet you’ll have your hands full then. What other kids do you have?
Are they excited about their new sibling?” Ah no they aren’t alive unfortunately now that kills a networking event.
Or they say…
“Do you know what you’re having? Is that what you wanted? Are you excited about it?”
“Looking forward to the birth then?” “Baby will definitely take you by surprise by being really early.” Thanks for that I’m having a planned C Section so I hope not but again I don’t really want to go into that with a total stranger.
So folks next time you’re at a social event or networking for business and you see a pregnant lady perhaps instead you’d like to simply pay her a compliment and not think you can use her pregnancy as an icebreaker to ask personal questions or as an excuse to fondle her stomach unnecessarily. Yes strangers seem to think your stomach is suddenly fair game for a good old fondle!