Monday, 29 August 2016

Wrong Assumptions.

NICU MUM #MEDICAL FILES
 
If you are an avid reader of the blog, you know our story by now. However, I wanted to take a different approach, when I submitted a piece for my medical files series. It is about the assumptions people can make about you when they find out about your son's condition and the journey we took in that fist year of Elijah's life. It does not all disappear and become hunky dory when you come home. This is with you, for life.
The look in the consultant’s eyes when he looked at me and then at my partner. He and his colleague then said, ‘we will leave you alone for a moment’. As soon as the door was softly closed, I crumbled. I was being told that my son, the same son who had just been diagnosed with a heart threatening heart defect called Tetralogy of Fallots that would require surgery has had a Neo Natal Stroke. They couldn’t tell me what the lasting damage would be. He may be disabled, he may not reach milestones, he may not walk or talk.
I was left hollow; the assumption from everyone would surely be that I as Elijah’s mother would cope with whatever was thrown at me. That I would love and accept my child no matter what. But, I began thinking, could I really bring up a disabled child? Do I have the strength to do it? I was angry with myself, for not creating a perfect baby, that it was my fault we were going through this. That I didn’t grow Elijah properly and caused his heart defect, that the delivery caused his Neo Natal Stroke. Back in those early days, I was in denial that there was even anything wrong with Elijah. That they had got it wrong. That any minute they would turn around and tell me they made a mistake. I was angry, angry at everyone, but mainly myself. I began to worry what people would think of me and my less than perfect baby. What would happen if he was disabled? But most of all what would people think? Would they judge and selfishly would they blame me?

Elijah, 5 days old in the NICU
The pity in friends and families, eyes and voices when we updated them of Elijah’s diagnosis made me angry. I didn’t want their pity, I wanted for my son to be okay. I wanted to not be going through this. To not spend my first 7 days as a mother watching my child hooked up to every tube and wire. To not be told at 6 am one morning that he had been having seizures. To not have to sit next to him holding his hands for 2 hours while they glued probes onto his head. Or that he wouldn’t feed for 3 days. That I couldn’t just pick him up, put him in his car seat and bring him home. Like everyone else, like the ‘normal mothers and babies’.  I began to internalise all of these feelings as I didn’t want to admit them out loud. I was expected to be strong, to keep positive.
Elijah was amazing, and after 9 days came home. With regular appointments, and check-ups we were told to expect the surgery date to be around the 6-month mark as this is when it is its most successful. As we settled in to being new parents, soon people forgot that Elijah had a heart defect and needed surgery. We were a ‘normal family’ of sorts to the outside world. People admire my beautiful little boy when we took him for a walk, and he met all of his milestones when he should if not before.

Every time someone commented on Elijah I hid the fact he had a CHD and was waiting for surgery. It became our dirty little secret. Except do you know what happens when you try not to think or speak of something? It is actually all you can think and speak about. I think I began to tire my friends with my selfish stories about how unlucky we were and I began to resent others who went in to have a baby and came home on the same day. At baby classes I did one of two things. I was the martyr who had to cope with all of this, and was doing so well when people asked me how brave I was to go through such an awful thing. Or I hid everything and pretended Elijah was completely fine. I regret not telling them the truth, that I wasn’t eating and I was abusing medication just to get through the day.

When Elijah came home, I think the assumption is that you just have to get over and on with it. Yes, we were in NICU, but look your baby is home now, savour it and enjoy your time together. Except I couldn’t and I began to stay inside, and not go out as I couldn’t face the questions from people we knew. I look back now and that time is tainted, and I regret how I acted. I should have just been honest, not bottled in up, not worried what others would think of me as in actual fact it was really normal to be feeling like this. It was the same with Elijah’s surgery, people just assumed we were ‘bearing up’, and we were ‘keeping positive’, and after the success of the surgery and we returned home we could put it behind us and move on with our son and his ‘fixed heart’. I felt like shouting that it is not over, I have nightmares, flashbacks and I didn’t eat properly for months. I was clearly depressed and I was in a very dark place. It doesn’t just end; you do not just get over something like your son having open heart surgery.
They opened my child up, I instantly get a flashback every time I see the scar running down his chest. I vividly remember the blood draining from his chest into the pump. I remember taking him to have his stitches cut out of him. We do not just ‘move on’, we have check-ups, appointments and heart scans. Every time Elijah is ill, I hope it will not result in a hospital visit. When you look at my child you would not think there is anything wrong with him. He is happy and he is healthy. After all, no more surgery is due until he is likely to be a teenager. He does not take medication and yes, we really are now just a normal family. We do not even have an hospital appointment until Jan 2017.
Accepting my heart warrior mum status with pride.
I have learnt a very hard lesson in Elijah’s first two years, that one must not assume that just because everything is okay on the outside, that the person feels like this on the inside. I wish I had been honest to all of the people who said to me ‘how hard it must have been’, ‘how strong you are’, ‘keep positive’. I wish I hadn’t hid behind the denial of Elijah’s condition in those first 6 months. I wish I had sought help earlier. I wish I hadn’t been ashamed of how I felt, and let the guilt over take me. But most of all when people felt sorry for me, secretly glad it wasn’t them going through this, that I was just honest with them, maybe this would have put the wrong assumptions to bed for good.
 
Similar NICU MUM posts in the medical files series;
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Vicki Moore and The Honest Confessions of a NICU Mum Blog are proud to support Bliss, the special care baby charity and we make regular donations to support babies in the UK who are premature or sick. To find out more about Bliss please visit bliss.org.uk
 

Sunday, 28 August 2016

Is there enough support for NICU parents?- Guest Blog- Actually Mummy

After our NICU journey came to an end, (although it never really ends). I found so many options that could have been, would have been, should have been offered or made available to us. But, they were not, so this led me to ask as NICU parents are we getting enough support? I for one, felt like I wasn't supported enough. Bliss (bliss.org.uk) are doing an amazing job about improving the NICU journey for all and I support them by donating 10% from each order that you lovely guys place in the NICU MUM STORE.

If you look at America there is so much emphasis on supporting the NICU parent, something that is just not really done here. As part of starting this blog, my aim was to try and help others going through this, or to raise awareness. To get the message out there, that we as NICU parents need more honest support.

I contacted Helen from the brilliant @actuallymummy blog, and she kindly agreed to publish my guest blog, is there enough support for NICU parents? Being bloggers, with a large volume of social media followers we really can help each other out to get a message out there and raise some awareness that NICU Parents need to have support, and have more facilities available and easily accessible in every hospital.

You can click here to read my guest blog on the Actually Mummy blog!

Why not show your support for a NICU MUM by wearing a NICU MUM bracelet or badge, or if you just love the blog and want to help spread the NICU MUM message.

They make a great gift for anyone who is going through the NICU journey and to show you are thinking of them.

They are a symbol of strength for the NICU MUM.

Bracelets are Made by Mama_2_Mama

10% from each one will go to Bliss charity.

Vicki Moore and The Honest Confessions of a NICU Mum Blog are proud to support Bliss, the special care baby charity and we make regular donations to support babies in the UK who are premature or sick. To find out more about Bliss please visit bliss.org.uk

Wednesday, 24 August 2016

Lucky? We do not know the meaning of the word.


This post is dedicated to @whatthechujj she is a beautiful lady doing wonderful things. She is the perfect example of what we should all be doing to set a better example to our children and future generations in how to show kindness and use the fortunate position we have found ourselves in to help in a realistic and feasible way to help those who need it.

You may read my story and think oh you poor girl having to go through all of that straight after you gave birth. To have had your baby taken off you and admitted to NICU, to discover he may not make it due to a serious heart condition. For him to then have countless tests as he had a bleed on the brain which caused seizures. For me to go home without my baby. To attend countless doctor and hospital appointments which ultimately ended up with Elijah having open heart surgery at 6 months old. For a very long time I wallowed in self-pity about why life would be so cruel and deal us this card. That I was robbed of everything I knew the birth experience to be. That I had a rough start to motherhood. But, ultimately what do I have now? A happy and healthy little boy who is fast approaching his second birthday.
 
Elijah in the NICU
We live in a country where we have the NHS, and yes we know it has its faults, doesn’t everything? I cannot sing their praises enough; we do not realise how fortunate we are to be in a position where we can use the NHS. I was able to give birth with medical assistance in a clean and sanitised hospital. My baby was cared for by professionals in their field, and in NICU that has the latest equipment and medicine on offer. He had open heart surgery in probably the most famous children’s hospital in the world, by skilled surgeons who have perfected their techniques for this surgery. Anything he needed, he had, what did this cost us? Nothing. We paid nothing towards this (obviously this is what our taxes are for etc.) but it was just available to us. My baby’s life was saved; he now had a chance of growing up.

But what would we have done if this was not an option? That the nearest hospital was miles away as the others had been bombed and were no longer standing. That you had to risk yours and your child’s life just to seek medical assistance. That you wake up and you have no food to feed your child, that you have no nappies, no basic pain relief to ease their fever. Nothing to make them feel better, nothing to give to them to soothe their injuries. If we lived in Syria, do you really think we would have had the same outcome? I think we all know the answer to this.

Would I still have a child to hold?
What did you do when you woke up this morning? I was warm in my bed with my child next to me snoring softly. We were warm, comfortable and most importantly we were safe. We went to bed last night we went to bed knowing our child was safe, fed and clean in his bed. Elijah had an entire kitchen’s worth of food to choose from for his breakfast. I was able to change him into a clean nappy. He could have a bath with clean, warm water. A whole draw full of clothes to choose from and a house full of toys. He could watch C Beebies, I was able to go to work and leave him with Greg knowing they would go to the park, the library or play in the garden. We can spend our time, watching SKY and scrolling through Insta or Twitter wondering what Kate Middleton is up to today.
Have you ever thought, and I mean really sat down and thought what would happen if you couldn’t feed, clothe or look after your child? I haven’t, until now. I think I have been extremely selfish in how I am raising Elijah. There are months where of course we do not have too much money. But, all the bills are paid, there is always food in the house and Elijah if I am super honest wants for nothing. He goes to a private nursery, he goes to a music class and I regularly buy him little presents and sweets after I have been at work all day. Elijah’s birthday is in less than three weeks and we have already brought him, a ton of presents with many more on the list. I am planning a birthday party and sparing no expense to give him the party I think he would like.

Enjoying life at the seaside
Yes, I spoil him rotten, I think we may not have even got to his second birthday, so I want to celebrate it. For it to be special. Mainly more for me I guess, to give him everything I never had. This is all so superficial, so material and Elijah would not care if he had a party with cake and presents or if we didn’t celebrate it at all. At this young age, he has no idea. We are by far are not the richest people in the world but we can provide this. I can buy him mountains of plastic tat from Poundland and a ton of Kinder Eggs. I guess this is where I feel so conflicted in the fact yes, we do work hard to give Elijah a good life, and I also do not think Elijah would turn out any different if I didn’t provide this.

It is very easy in the day and age to ignore the news coverage, the front of the papers and carry on with our glamourous Instagram post lives. I for one am very guilty of doing this. As its not on our door step we can choose not to take any notice of it. We can speculate without actually knowing what is going on, as we are not living it. We can say, oh well they ask for it, it’s nothing to do with us, best stay out of it. We can then standby and pretend to feel bad when we hear about hundreds and thousands of deaths but then worry about what time Masterchef is on and all is forgotten again. We can say we would like to help and have every intention to do so but never actually get round to it. To say charity starts at home. But what happens when there is no home for charity to start at? It’s been destroyed and your left without a family. You are left with no money, nowhere to go so you risk your life literally your life to try and cross the border to have a better life. So what do we do as a country? Shut the borders, turn our backs and watch Eastenders. Or to send their children away to hopefully be safe and grow up and become something but these poor children instead live in a filthy refugee camp.

The little boy Omran who broke the media
@whatthechujj  has really opened my eyes to what we can do, what is feasible to do in the position we are fortunate enough to be in. Something as simple as sending an email to an MP, which I have done click here to view a letter to my MP. I received a reply from them asking my permission to pursue this matter. To gather such small necessities as medical supplies, bandages, pain relief, first aid supplies, do you know you can get 200 plasters for next to nothing? Imagine not being able to give your child pain relief, I don’t know about you but we have about 5 bottles of Calpol kicking about our house! Can you ever imagine  where you do not have any nappies to change your child with, to not even have a sanitary towel or tampon. That you are caught up in the war that is raging you don’t even have anti septic to keep your wounds clean. I look around my house and I can see I have all of those things and more. Barely used, unopened, half used. What do these people have? Nothing. What do we have? So, so much but still we complain. About the weather, money, taxes, work and that you lost Internet connection playing Pokémon Go. We really do not know how lucky we actually are.


This post was not to preach, not to demand anything from you, it was just to say I for one, as a woman, a mother and a human will be trying to do something to help. Something that is feasible. Such as sending bandages and medical supplies to help. Please have a look at @whatthechujj blog for a full list of items needed . I will hopefully try and waste less, buy less and help others when I can and hope Elijah will take lead from my example and do the same. That we really do treasure what we have, and stop feeling so sorry for ourselves when really we are as fortunate as they come. Look at us, because of the country we live in my child is a living breathing example, some in Syria are not so lucky.

Similar NICU MUM posts

Dubs amendment a letter to my MP

Are we going to be known as the nastiest generation?

What sort of world have I brought my son into?


Thursday, 18 August 2016

Life with my little allergy duck

What I love about when I receive a medical files story, is how different they all are. How much they open my eyes and make me aware. It really does educate you about what others have to go through. I think this will resonate with a lot of people. I myself have a nut allergy, and have a best friend with a gluten intolerance. So far, we have been very lucky and Elijah does not seem to have any allergies. However, how would you cope if your child had some serious allergies? Allergies that would effect your day to day lives? Read the one and only allergy queen herself (she knows what she is talking about also suffering from multiple allergies) Ally the mama behind @lifewithmylittleduck tell their story.

From the moment I went into labour I knew our journey with Astrid would be special and challenging. The only thing was I didn't quite realise just how challenging it would be, I mean with me as a mum I should have guessed. Astrid was a good little baby and everything was so easy for us with her, from day one she was just a happy little baby gurgling and cooing away I mean it was pretty much perfect ( apart from the usual no sleeping factor but I expected that). She was a great feeder from the onset never had any troubles with breastfeeding her and it all seemed so perfect. I mean she was a bit sickie but most babies are at first whilst they learn the size of their stomach and Astrid was a greedy one.

At around 12 days old Astrid started to get a severe case of colic or what at the time I thought was colic. We tried everything really but nothing seemed to help. It was Christmas time so I was eating a lot of things myself I shouldn't have been lots of chocolate, cream all the bad stuff, so my mum suggested that I should lay off those for a few days and it was as if a miracle had occurred and the colic had gone. Our little happy baby came back and it was all feeling rather perfect again. 

But then things began to change again. We always had plenty of leaky nappies up to your shoulders jobs but I just thought this just be what all babies are like. At around 4 months I decided to take her the doctors as she was still being sick more times than I could count in a day, there response was "Babies are sick nothing to worry about", so I brushed it off and continued as I was with the no dairy and no gluten in my diet ( as im a coeliac so this was necessary for me). Shortly after this Astrid had her first allergic reaction hives absolutely everywhere it just seemed to spread like crazy I wasn't too sure what to do the first time, thank god for my mum really I was an absolute mess panicking like a crazy woman. We just gave her a shower and soothed her to sleep the best way I knew how the BOOBIEE!!. We thought this could most likely be a one off thing so continued as we had been. Each week they became more and more frequent doctors gave us the same answer "Babies are sensitive" , “Babies get sick” helpful as always it was definitely becoming a pattern.

Two more months passed and it was time for us to introduce some food we hadn't up until this point at the advice of the health visitors no food before 6 months and as she was thriving quite well on breastmilk I wasn't too worried. We began with the normal purees and just general fruit stuff this took time for Astrid to get used to it seemed even the simplest of foods didn't agree with her. Lots of sickie times and very pooey nappies, plenty of washing for mummy to do; you can never have enough clothes with a baby Astrid around. Slowly but surely we got there with the purees so we decided to move onto toast, rice cakes, general dinners we were having. Shortly after this Astrid’s face started to become very sore and red as it was summer time I first thought maybe the heat was bothering her as she did have some sores in her creases to, after 2 weeks it was no better so I thought why not let’s try the doctor. We were prescribed a steroid cream and sent away no help with what might be causing it or if there was anything we could do to help her.
At 9 months I went back to work and Astrid started nursery this was just horrible, anyone who has had to send their child to nursery with dietary requirements will sympathise I’m sure. Every week I was being called to go and collect her because she had a bad tummy trying to explain to them that she has just eaten something which she is intolerant to it’s a bloody baby room there is things Astrid can’t eat everywhere.  This definitely made the whole going back to work thing stressful for the first two months at work I had to go home every week with Astrid. Her face was just getting worse and worse from being at nursery and things just weren’t getting better. Than it just got worse.  

When Astrid was around 10 months we had our first encounter with egg I stupidly didn't even think egg could be an issue and gave her the smallest amount of my wrap with mayonnaise in,  I mean this piece was no bigger than my little finger nail, she didn't even eat it really. She was all fine than suddenly 10 minutes later in the middle of M&S she was sick everywhere and I mean everywhere. My first thought was oh god she must have a bug, we were staying with her Great Nan for the weekend so this made the whole process ten times more stressful. For the next 10 hours she was sick every half hour kept no feeds down and barely slept. That was definitely one of the most worrying nights of my tine with Astrid I couldn't help but think the worst I was constantly worried she had something terrible. After speaking to my mum it clicked it must be a food related problem, then I realised the only new thing she had eaten she had never had was egg I felt so stupid I mean I should have realised sooner.  

 After that weekend I took her straight to the doctor explained it all then again was fobbed off I so angry. 10 months of continuous appointments and still nothing I arranged to see a different doctor who finally referred us to the allergy clinic. I was so happy to finally being acknowledged, our appointment letter came and I couldn’t believe it her appointment was on her first b’day it had taken us a whole year of her life to get to this point. I just remember sitting in the waiting room with her daddy not knowing what to expect we had our first skin prick test and I just remember Astrid getting nervous before we even sat down she hates doctors and always got nervous at every immunization she was so clued up to it all only needed to walk in the room and bang the tears would start. Skin prick test over with she definitely had an allergy to raw and cooked egg I was sort of relieved in a way that I knew we finally had an answer for all her problems. We then had a meeting with her allergy doctor and we were also told along with gluten, egg and dairy we should remove soya as children with a milk intolerance can be sensitive to this too,
 I mean even I was learning something there. I then met her dietician I just felt completely at ease she was the kindest nicest doctor I had ever met and so helpful and passionate still to this day I actually look forward to my appointments with her. She is an absolute godsend to the NHS I’m telling you it’s hard to find someone who cares so deeply about their job and each individual patient.
 

We had a great first birthday party even though Astrid couldn’t eat the cake as Nanny had preordered it so still had egg in it. But all in all things were going really good, apart from the problems with the nursery which never truly got resolved luckily she had the best key worker in baby room who was like a hawk and watched her every move making sure she didn’t eat anything she shouldn’t. As time went on her face went back to normal and she really started to become a happier little girl.  Over the next year of Astrid’s life things just got better and better everything improved I mean we still have bad tummies and we still have the allergies and intolerance but for us these are manageable

From diagnosis till now we have only had two allergic reactions and I feel so privileged that it hasn’t been more. It has been a very long hard journey for us and was one of the reasons I wanted to start my blog and help other parents who struggled to get the support like I did. Those times when Astrid was having hives and being sick I just felt so helpless and alone when your sitting at home as a stay at home mum and your daughter has been sick for the 10th time and were not even past midday it can be very draining and lonely.  So our journey continues with Astrid with hope that one day she will outgrow her allergies, and hoping I can help some parents out of the loneliness I felt on those long days and sleepless nights.

Love

Mummy Duck x
If you would like to follow/ get some amazing recipe ideas from @lifewithmylittleduck you can find her on;
instagram: @lifewithmylittleduck

Ally would also like to thank the below charity and website;  https://www.allergyuk.org
 
 
 
 
 

Sunday, 14 August 2016

Who runs the world? Girls. Well, mothers to be precise.

There is one thing I will say about social media, in fact I will sing it from the roof tops, it saved me. No amount of counselling and medication in the world did what joining Instagram and starting a blog on a whim, when Elijah was at nursery has done for me. Click here to read how blogging helpedme cope with PTSD.  Now, to put this into perspective, I didn’t even have a Facebook account until 5 months ago. When I finally got to grips with Instagram (I say that I still have no idea what I am doing) someone followed me, and as I scrolled through her feed I noticed something. Her little girl had an incision mark like Elijah, it turns out she also had open heart surgery. I was nervous, but I messaged her and we began to chat about our experiences.

I felt as though a weight had been lifted, I didn’t feel alone anymore. From there on in, I looked to connect with other NICU, CHD (congenital heart disease) Mums and the odd Dad. I felt I was finally clawing my sanity back. This is when this little ol’ Alice stumbled upon the magical world of Mum and Dad blogs. The real view of parenting. The good, the bad and the ugly. When I was finally brave enough I contacted (whist shutting my eyes after pressing send) @toomuchmotheringinformation @mummyandnina @themumcoach @themommysomniac who tuned out to be some of the nicest people I had ever spoken to! They advised me, they supported me but most of all they took a chance on me. I cannot thank them enough, they were the ones that steered me in the direction and got me where I am today, over 10,000 views later!
 
Through these lovely ladies, I then found Jenny @mamazou85 and Donna from @the.mama.squad and found out how inspiring their message to parents was. That no matter what your story is, what you choose for your child, your experience, we are in this together. To build each other up and not to tear one another down because of what we have chosen to do for our children. I don’t think these ladies actually know how much they help someone like me. I have in the past had a lot of self-esteem issues, suffered from anxiety, excessive worrying and have very little confidence. However, just one little pic on their feed each day and seeing it connect all these amazing people and all of them supporting one another makes me feel like I am Beyoncé and can totally rock this mother malarkey (to the theme tune of Who runs the world).  Then I saw the post for The Mama Squad Assemble, and imagined Donna as a Mama Nick Fury with her eye patch calling all of us as her Mama Avengers to battle. I did decide not to go heads to toe black widow outfit in fear of being a tad sweaty on the train.


Never, in a million years before I became a mother would I willing travel down to London on my own and meet a group of people I have never met off the internet. (Maybe a safety advert in that there?!) I would have always bottled it, and made an excuse not to go but I did have a little experience from meeting the lovely Nina and Ally @lifewithmylittleduck last month. I will say I did have a slight wobble the night before and messaged Ally in a panic as I was slightly worried that these genuinely talented ladies would think I am a weird Norfolk emo whose claim to fame is her child’s heart surgery. What if they were expecting Mother Theresa and I come in with quite a partial liking to gin and swearing like a sailor. But I could totally do this right?! So that’s what I did. I just hoped I wouldn’t be kidnapped, locked in a room never to be seen again by a man in a trench coat with a beard. (This did not happen but there were some pleas from Donna to COME BACK after we went to the bathroom!) My butt was seated on the 10am train from Norwich to Liverpool Street hoping I had gotten on the right train! No backing out now!


Ally dutifully met me at the gate ready to escort me like my mum, as like a child I do not understand the tube. Actually, I am sure a child has more common sense than I do. We then met @mummybakesdairyfree and @rachelkellett whilst rescuing the lovely Jenny and made our way there! Until we realised between 5 of us we didn’t actually know where we were going. But, safety in numbers right? Then a problem became quite apparent we did not know who the hell each other were when we used our first names, only Insta handles! As we all cautiously went up the stairs, the nerves were slightly setting in and at this point only one gin had been consumed! However, after meeting Donna I felt instantly at ease, as even she was nervous! We soon learnt we all felt the same. So, after a few more drinks and might I add a lot of boob staring at name and insta handles tags, lots of gasps of ‘Oh yes, of course it’s you!’ the nerves slowly ebbed away. It was slightly like being back at school and hoping everyone liked you! I can also confirm there were no men in trench coats with beards and everyone actually seemed to be who they appeared to be on their feeds! No Malcolm’s in sight!

I have however now come back with a huge girl crush on @grace_timothy, where forget the #mumface, I want her face that’s not weird right?! I am so insanely jealous of the beautiful Priya @pabarilife who is one of the nicest people I have ever met, and the @uhohmum you had won the title of best plaits that day, I will admit defeat! I now have a little band of NICU MUM bracelet wearers, @lifewithmylittleduck, @pabarilife. And the one and only Polly Pocket herself Jenny  @mamazou. Get yours by clicking here and remember 10% ofeach one goes to Bliss.

Donna was even kind enough to not only take a group photo but to get everyone involved to do a huge #bigkidsforgosh photo, this was her event and she really didn’t have to do this but it really helped get the message out there, and for that I am super grateful. @pandaandping also did an epic wheel barrow! It actually makes me feel like I am making a difference and going in the right direction (she says hoping).  We have also raised over £282, with 2 weeks to go!


Nick Fury, I mean Donna even had two missions for us, see she is the leader of the Mama Avengers! One was to make us think of our #mamahood power, mine of course was my epic mum voice that can stop and silence both boys (yes even Papa NICU) in their tracks. The other was the @superchargedclub’s #badassmamas campaign. I wouldn’t have dreamed of having my photo taken before all of this, never mind speaking on camera about what I have conquered as a mother. I was a bit nervous as I wanted to talk about PTSD and really get it out there so with a few gins and the lovely Mary’s support I did this. Yes, its sounds ridiculous and I probably sounded a complete twonk but I am proud of myself it is something I would never have done before Elijah. It really shows how far you can go with someone saying actually, yes, you can do it.

When 6pm rolled around and people began to depart it was quite sad, I think if we all could it would have continued well into the night! Bar crawl next time? As strange as it sounds to finally see the people you follow, speak to and stalk (ahem) on a daily basis, as well as some you didn't know it created such a nice atmosphere. Some would think that in a room with 30 odd women it would be bitchy as hell. It was in fact the opposite. I did fear that poor lone bar man was slightly scared for a while though!
 
With motherhood comes more judgement, resentment, bitchiness, and competitiveness than I ever experienced in my life. However, I am glad to be part of the revolution that is breaking this. The amazing thing about events like The Mama Squad Assemble is that it is turning this on its head and instead inspiring mums, building their confidence and showing us we can do what we want, and support each other doing it. I cannot wait for the next meet up, and I feel really lucky to have ladies like this in my life. I feel like this is now becoming super cheesy, ahem. Truthfully, there is no need for the negatives, and yes, we do have our hang ups and strong opinions but sometimes it’s easier just to say f*** it who cares.

So who runs the world?

Mothers do. Duh.
 
pp.’s I will just say getting the 20.00 train back to Norwich was an adventure too, there was family crisis going on in the carriage worthy of Jeremy Kyle, an older lady on a mobility scooter whizzing down Price of Wales Road saying how drunk she was, and no I am not making this up she had her badger out. I got back at 23.15pm thoroughly traumatised and ate my weight in cheese watching The Bourne Supremacy. Dear God, it’s still burnt on my retinas.
Now, go get your butts over and follow these amazing ladies!

Tuesday, 9 August 2016

Fran and Esme's Story

When I first started the medical files, I really hoped it would help others going through the same thing. That by reading others stories it would make them feel supported, comforted and most of all let them know that they are not alone. All of the stories so far have touched me, but this one slightly more so, as it is very much closer to home. I met the lovely Fran via my partner Greg and I learnt a few months ago she was pregnant, then before I knew it she had her baby girl early.

Not just a few days early, or a week early but at 24+1 weeks. She was in NICU, the very same NICU my baby boy was in two years ago. I checked in with her when I could, and followed her updates closely, and have her to thank for inspiring me to make a little project into fruition after she received it, and loved it! Her beautiful little girl is now 2 months old and nearly ready to come home, where she belongs! This is Fran's story of Esme's  early arrival, in her very honest words.


From the second I laid down in that dark ultrasound room, and saw her tiny heart beating away, my life changed. The overwhelming love hit me all at once, and after that I couldn't wait to see her at the 20 week scan. I was very nervous second time round, but was very happy to know that all of her organs were normal, that heart was beating away still.


The weeks went by of me panicking every time I hadn't felt her move for a few hours. I was so exhausted- but aren't all pregnant women?? Then 24+1 weeks... Tiny bleed, up to hospital to check it out. I knew something was up, but sitting in that waiting room for 6 hours, I never expected what would happen at 9pm... She checked her heartbeat.. All fine. Then with horror in her eyes she told me that I was 2cm dilated... They started preparing for delivery.


The Doctor came in and did another scan to check she was head down- which she was.. I had a Cannula shoved in, and a nasty steroid injection. It was 100 miles an hour, and all I could see was mums worried face. The baby doctors then came over to speak to us and the devastation they left it still ringing in my ears now. If she hadn't been breathing, they would have let her die. No mother wants to hear that. Especially after you've planned your future, put all of your love into her, and she's given you a reason to get out of bed in the morning...


Luckily she heard, and decided to stay in my tummy and grow for another 2 weeks..
When that day came, I couldn't cope anymore. I knew my body couldn't carry her any longer. I thought I was losing her, I didn't feel right. At 16:30, the midwives knew something was up. I was 4cm, and my waters had gone. Again the worried look on the doctors face... She did a scan, and her heart was still beating away, and she still had some fluid left to cushion her. Another Cannula... Then over to delivery suite.


Never have I seen a more negative person hook me up to the magnesium drip (for Esme's brain), after all it was me in labour and I was positive, holding in the pain of the contractions. The midwife was useless, negative, and I did not want her delivering my baby. The doctors came back 10 minutes later with panic in their eyes. He sat on my bed and explained that I had a life threatening infection Chorioamnionitis. If my labour didn't hurry up, I would have to have a C section- a very dangerous operation at 26 weeks. So both ways our lives were in danger. Mum told me not to panic, she kept me breathing through those contractions. I had 2 lots of antibiotics put into my cannulas, as well as paracetamol (that was all the pain relief I had 💪).


At 20:00 things changed, the last of my waters went, and I knew she was coming. The pain was excruciating but it didn't matter. Hearing she was born in her fully intact sac gave me hope, hearing she was a girl also gave me hope. But it felt like those doctors were working on her for hours. I couldn't look. One of them came over and said I could see her. They brought her too me, but I was so scared to look in case she was scary. She wasn't... She was perfect in every way with her little pink hat on. I will never forget that day. The best and worst day of my life.


Since then we have had so many ups and downs, each day has been a blessing. I've seen her change so much over the last 9 weeks and 2 days, and I feel honoured to have seen her grow. We have an unbreakable bond now, and as each day passes we are one step closer to being together again. And I truly cannot wait... The love I feel for her in endless, unconditional and unexplainable ❤

Fran would like to thank Bliss for all of their help and support, you can do your bit and help contune this amazing charity's work by buying a NICU Mum bracelet! 10% of each one will go there! click here to order!

Similar NICU MUM Posts in the medical files series;

Carly's Story

Lisa and Oscar's Story

Rachel's Story

Heart Warrior Will's Story

Elijah's admission to NICU


Friday, 5 August 2016

Dubs Amendment- Letter to my MP.

This is the below letter I sent to my MP George Freeman regarding the diabolic situation in Calais. The way we are acting as a country by turning the other cheek is shameful. It seems the promise of immediate action from the Dubs amendment, is as worthless as the paper it is written on. I implore you all to do the same, flood parliament with letters of concern, threats of action, a wise lady once said to me, 'The smallest steps make the biggest imprint'.

                                                        

 http://www.helprefugees.org.uk/


Dear Mr Freeman,

I hope you are well.


My name is Vicki, I live in Dereham and have done for 26 years. I am a working mother to a two year old son. I also run a successful blog with a large social media following.
I have to admit, I have never felt the need to contact an MP, as I never thought it would do any good. But, if there is just one small glimmer of this email making a difference then I have done the right thing.

As a government, I have felt you’ve always done okay by me and my family. Me and my partner have worked hard and paid our taxes. I have been fortunate to be able to take 9 months paid maternity leave. This was essential as my little boy was admitted to NICU for 9 days and required open heart surge at Great Ormond Street Hospital. Because of the government and the policies, it has put in place for things like the NHS, my son is alive and well.

As a parent I would do anything to protect my child and give him the life he deserves. My child is well fed, clean, has a warm bed to sleep in at night protected from any dangers. He lives in a sanitised and clean home. When he is hungry he can go to the kitchen, when he is thirsty he can get clean drinkable water out of the tap, he has toys to play with, goes to music classes and a Ofsted ‘excellent’ rated nursery with a curriculum. He has access to shops, a library and multiple parks, and soft play areas. Elijah is a happy and healthy little boy. When he turns school age he will be entitled to go and received an education until he is 18.

He lives in a safe community, where the worst he has to see is the occasional speeding or shoplifting incident. There are no wars to be fought here, no guns, no bombs and he can run down the street and not have to fear for his life. He knows that his mum, dad and Nan are safe in their homes. That one day he won’t come home to find his home burnt to the ground and his family nowhere to be seen.
It is very unlikely that one day I will have to make the heart-breaking decision to separate from my child and send him on a life endangering journey just for the smallest chance he would be safe. I have made a decision before regarding my son’s life. I had to consent for a surgeon to open him up and repair his heart knowing full well he may die. Have you, or any of your colleague’s had to make a decision like this? That could possibly end or save your child’s life? How would you cope if when you strip everything away that we have in this country we would pack our children off in a lorry illegally just to try and save them and give them a better life?

You can easily pretend to care when you see, read or hear about the refugee Calais problem but then some reality show will come on TV and all is forgotten. But, as a parent I cannot forget. I cannot just turn the other cheek when there are children being forced to risk their lives every night to try and get into our country. To escape from the flea, rat and rubbish filled ‘campsite’ they are calling home. Is this wonderful ‘united’ country going to sit back and do nothing when children are stripped of any sort of human rights and are living like animals? Being forced to live on animalistic instinct to try and survive? Being abused by authorities who are supposedly there to protect them?

No matter where they are from, no matter what they escaped, what they came from  surely it is up to us who are in a position to help, to actually do that and help? Why is nothing being done? Why are we not being made aware of what is really going on and what we as a country are going back on the ‘Dubs amendment’ that was supposed to be resulting in IMMEDIATE action? When children are risking their lives every single night resulting in multiple deaths why isn't it being discussed? What is there to discuss? Are we all humans? Yes? Who have evolved to protect our own species and carry on the human race? To care for and nurture the young? Yes? Then why are we willingly sitting back?

I guess this is where you will assure us that the government are doing all they can, that it is an urgent priority. That actions will be taken. Why are you not asking the actual people of this country how they want to help. I for one would be happy to take in some of these children and foster them. Why is the government not running media campaigns in how we can help? Food, clothes, outdoor equipment donations?  Asking us if we would be open to fostering? Pushing for this?

I am sure you have been around Dereham Town recently? Have you seen the sheer number of empty shops? Of unused buildings? That’s in just one small town, why can’t spaces like this be used as temporary foster homes?  How much would a few camp beds be? How much does working electric and water really cost when you put it in perspective of children’s lives? What if the shoe was on the other foot? What if we were all sending our children away and other countries were turning the other cheek and letting our children die? People have spare rooms; unused holiday homes there really is enough room in this country for us to take these children in.

I presume there is the worry that if we let the refugee and vulnerable children in they will swarm schools, overload the NHS etc., but they do not have to. If you asked the actual people of this country I am sure there would be retired teachers, doctors, nurses, junior and student doctors all willing to help. Anything is better than what we as a country are doing now which seems to be nothing.

So many are trying to help, but it sometimes feels like this is not particularly encouraged or supported by the government. I mean what action is being taken re the abandonment of the ‘Dubs amendment’. Is it now down as the residents of the UK to step in and do what you are supposed to be? Protecting these vulnerable children. They didn’t ask for this; they are the innocents in all of this. This is where we can really do something and take these children, teach them to be kind, accepting and hardworking individuals. We teach them that violence doesn’t solve anything, but most of all we teach them that they can be loved and have a stable and safe family home. Perhaps it may help break the cycle of all of this for future generations. That they grow up standing side by side to our children and everyone just gets on. That in their life time they will not have to sit and make a decision whether to leave helpless children to live in squalor or worse still to let them die.

We live in a democracy, and we are extremely lucky to have this. So why are we not using it? Why are you not asking us to help? Our ideas? I am one mother with a voice, imagine how many others would stand beside me and help if we were only asked and given the opportunity to. If not what I think you might find is the country as it always has, will be doing it for themselves. As most do you underestimate the voice of the parent.
I think in amongst Brexit, Kim Kardashian’s wardrobe and EastEnders we have forgotten what is really important. Children. They are the future generations, and when they are being left to die and live worse than us what do you really think is going to happen? How their parents will feel when they find out their child has died. Because of us. Do you think they will forget this? Do you think this will end the violence? Of course it will not, it will continue it will be one more round of ammunition to fight Europe with. So let’s just do the right thing? Let’s do what we as a country are good at? Pulling together and helping these poor children.

I really hope as a government action really will be taken soon, it is past the point of discussion. Children are loosing lives.

Yours Sincerely,

Vicki (NICU Mum)



Wednesday, 3 August 2016

Mummy and Nina Collab- Abortion


I believe there is always that one person you know who will encourage you to go outside of your comfort zone, to push you that bit further. To challenge yourself and go to a point you haven’t been
before. For me that lady is Nina. A blogging mentor, she has been there for me since the very early days. She isn’t afraid to criticise (in a good way) or suggest things I have not even thought about. Our first collaboration went well so it was only a matter of time before another would be on the cards. Especially when we talk nearly every day! Problem was, what would it be about? Without a second thought Nina mentioned that word that makes people’s eyes go wide and they shake their heads looking the other way; not wanting to truly discuss the issue. Abortion.
 
I guess, the question I would ask myself first is am I for or against abortion? Am I pro-life or pro-choice? The answer is I am somewhat in the middle. As a woman, and as a mother I know how hard it is to bring a child into the world. That was a planned pregnancy with the man I am going to marry. I know there are so many other circumstances that it means that it may not be the right time to do this. Would I ever consider this? No. That’s easy to say being in the position I am now. I have a house, I work, have a partner and he has a good paying full time job. If we rewind a few years, perhaps to one of the one night stands I had as a teenager, or to when I first met Greg and we were drinking and going out far too much with no money would I have kept a baby then? The answer is yes I would. If I felt, I could not have raised the child myself I think I would have selected adoption. That however is a whole other issue.

When I was 15 I was in a relationship for 2 years and had a pregnancy scare. The first one. I was overwhelmed, horrified, so many questions. I was so young; I was at school how the hell could I be
pregnant? It was just that, a scare. I wouldn’t have classed myself lucky as such, but it was not the right time. I was an immature girl who most certainly was not ready to become a parent. However, my thoughts were I would keep it, or have it adopted. I wouldn’t have had an abortion. My mother was a young mum as well, she had me at 17 and my nan supported her. I don’t particularly think she wanted me, and it maybe the fact she found out too late to do anything other than keep me. From then on, there was the odd scare here and there normally caused by my thyroid hormones but I never had toface the choice that others do. Should I have an abortion or should I keep the baby?

What do you see when you look at this? A life? A mistake? a regret? Hope?
I would never judge those who have chosen to have an abortion. I believe it is a woman’s right to decide what is best for her. After all it is her body that will grow and carry the baby, and give birth to it. There may be more pressing issues to why someone would want to terminate a pregnancy. It could have been a case of rape, there may be so serious medical complications. I guess what I do find hard is that a father has no right what so ever, even if they wish to keep and raise the child they have no legal right over their unborn baby. I guess if that baby is wanted at least by one party, it has a right to be born. This is where I sway Pro Life. That so many childless couples are desperate to provide a loving and stable home, yet some will use abortion as a form of contraception. There are genuine reasons people may want to abort a child, there are also very selfish reasons. But, ultimately like I said I believe it is everyone’s choice on what to do.

It led me to think what would I have done if I found out about Elijah’s heart condition when I was pregnant. At the first 12, or second 20-week scan? Where legally I could make a choice whether to terminate the pregnancy or not. Would I have? Knowing that at birth he could have died, that he would be in NICU for days, that he would need a life threatening operation? No. From the very first scan (I had a very early 6 weeks one due to a bleed) where I saw that he had his own heartbeat and was inside of me, there was always the option he could be saved. That there was a chance the operation would save his life. I would have done anything if there was a glimmer of hope. I know this is not always the case. Maybe, I would have felt differently if Elijah’s op wasn’t a success. The truth is I didn’t know about his condition when I was pregnant, and I didn’t have to face this choice. I know many other heart mamas who have had to make that decision, and have their babies at full term who have their operations and go on to lead happy and healthy lives. That’s not to say it is the one size fits all end to every story.

Being a NICU MUM there is one thing I have some knowledge of is the amazing work the Neo Natal units do. Elijah was the only full term baby in his room, and there were babies born at 23 and 24 weeks in
there with him. A friend of mine has just given birth to a beautiful little girl at 24 weeks and we are only a matter of weeks before she comes home. It is truly amazing what they can do in this day and age, and although those little ones may need a lot of help they can go on to have a long and healthy life. But, it makes me ask, how is it okay that if a baby can survive that young; that only one week before at 24 weeks you can still legally abort your child? I believe that it is not a ‘fetus’, it is a full formed baby, it has a sex, its own little character and routine. Imagine being that one that has to make these laws. To go into work and debate when is it okay to get rid of your unborn baby? To be responsible for this? How the hell do you live with yourself after that? I do believe, this needs to be reevaluated. If the baby can survive at that age granted with medical assistance, then it has a right to be born.

So, really when faced with the subject of abortion, I am a tad mixed with my views, very much like a good mojito. I am not 100% pro-choice, I am not 100% pro-life. Let’s just say I couldn’t go on a march for either. I am in the middle, sitting on my fence. Like everything else I live by, it is up to you. It is your decision, your alone and not for anyone else to judge. But, they will I am afraid, with such a loaded subject like this. The very words put people’s backs up never mind the fact if you agree with it or not. One way or another it is there, has been for many years, and will continue to be there. I don’t think the very word should strike fear in people in which it does. Like everything, the more we talk of something, the more it becomes an accepted issue people may not fear it so much.
 
 
To be taken to look at more of Mummy and Nina's posts click here!
 
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