What I like about being in hospital with my daughter

Not really a real post. But it half amused me. Badly typed as done from my phone in my sleep deprived state. Picture is from our breakfast routine at home (daughter is tube fed)

I am Feeling angry about the bad stuff like ongoing feed issues, fob offery between different specialists, my little girly not feeling well…
so…

What i like about staying in hospital

– when you get a really nice nurse who gets your stupid humour and you can tell genuinely cares. And they stay and chat and interact with your child. (They still manage to get stuff done too. They just never stop!)

– when the child goes to bed and you get to go to the parents room for a hot chocolate

– the chewy toast that gets brought to you in the morning. It’s basically breakfast in bed! (Ignore the no hot drinks rule and see above). I actually like that toast now. 

– when you feel like youre camping 

– eating chocolate in bed

– people feel bad for you and bring you stuff

– because we are in the sn community we almost always have friends here (that’s kind of sad but weey solidarity and social life)

– everything is really clean and someone empties bins for you

– when you get a cubicle and not an open ward and you set up a home from home

– the handwash doesnt destroy me like it does everywhere else

– it’s like a boring budget holiday where the climate changes rapidly. Actually that’s not good. It goes soo hot then freeezing. 

– the showers here always have really good pressure. And you get clean towels every time. 

– you learn to not have dignity (i snore loud)… It helps you not care what people think. You can also talk freely (and are encouraged to) talk at length about poop, mucous, gastric emptying

– there are different toys to show your child. And because theyre unwell they are sometimes more placid and accepting of new things

– there is water machines everywhere. And plug sockets 

– a microwave meal seems like a treat after chewy toast and constant prepacked sandwiches

– you can rant about ENfit tube accessories and everyone around you understands what the hell youre on about. You even make jokes about feeding pump rage (pumper’s rage)

– you learn new parameters for timing. Here is like an alternate universe where 20 minutes is actually up to 4 hours. You learn patience and assertiveness

To the Lady who Heckled us Needing the Wheelchair Bay

This won’t be a long post but it is something that has been popping into my head constantly since it happened yesterday

So as a family we had enjoyed a day out at a wonderful seaside resort.. celebrating the 80th birthday of my amazing grandma. Going out with a child can be hard work.. going out with one who has a disability can be much much harder. The amount of planning and packing involved is considerable. I knew we were making the trip over a week ago and I had been worrying about it pretty much constantly since the plans were made.

I realise this might sound irrational but there is so much to think about. How will we get there? Should we drive? Should we get the train? Would she be able to handle the train? Does it have good wheelchair access on the trains and at the stations? Will she be okay with a two hour journey or will this cause a meltdown? And so on.

In the end we decided it would be best for all if we got the train. The train there was fine. It was the train back that is still causing me anger and grief. We’ve had numerous train journeys in the last year with varying success. We’ve had times where lifts weren’t working at stations and we’ve carried the wheelchair up many flights of steps, we’ve had journeys where people look disapprovingly at our daughter’s need for an ipad. I am somewhere in between shouting at these people, explaining why it is necessary and that we aren’t just lazy, and saying nothing. These days I opt for the latter and silently bubble with rage within.

We were getting the train home after an actually very successful and happy day when the train conductor began to urge everyone further down the platform. He was looking right at us wondering why we hadn’t budged. We shouted over “We need this wheelchair carriage”

To which a lady in the crowd retorts “don’t we all?”

I can only assume she thought our daughter’s wheelchair was a pram and not a wheelchair. Well lady.. you would be hard put to try and get one of these bad boys in mothercare! £2400 worth of biomechanically engineered, posturally supportive, heavy bit of kit provided by the local wheelchair services. My daughter has severe quadriplegic cerebral palsy… in fact if she had looked closer she would have seen that we actually have a feeding pump and a big tube routed alongside the wheelchair. We also have several bags for we must take numerous outfit changes, many electronic toys, spare feeding buttons, lots of medications and all sorts of things that you would probably not even consider when planning the average day out.

The lady in question had two perfectly able bodied children. I’m not saying she hasn’t had a challenging day. But what I am saying is why can’t people think before they speak?

She probably doesn’t even remember shouting that out to us but me being the emotional anxious wreck that I am… I am dwelling on it a lot. I didn’t let it spoil my day but it did make my blood boil.

Luckily thanks to the wonders of the internet and social networking.. invisible disabilities and much more are getting the awareness they deserve. For all she knew it could be myself with a chronic illness. My mum actually suffers various chronic illnesses and some days they are debilitating for her.. other days she copes like she did this day. To look at her you would think her to be just like everyone else but the truth is she can be in a lot of pain. She will smile through it and put on a brave face… but you haven’t seen behind closed doors. Just how you haven’t with our life.

We have seen our child go to surgery, we have seen her have seizures, we have had to learn to tube feed, we attend weekly physio, we have a while set of processes in place to ensure she doesn’t get curvature of the spine (scoliosis) or hip displacement which could result in agonising surgery. She most likely does not have that for her child. If our situation were not a challenging one we would not have been awarded a blue badge so that we can park so we have space to assemble the wheelchair. To that lady – have you ever had to do any of these things?

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Our daughter does not need sympathy… she has an amazing quality of life, she is a happy and bright girl. Her physical limitations do not define her as a person but we do ask that people respect that some people do need a little extra space or access. Accessibility is an unnecessary hindrance as is people’s bad attitudes. She does not judge you, so don’t you judge us.

The man at the station was so kind and understanding. He helped us onto the carriage, he offered us the wheelchair ramp, he helped a man using a wheelchair onto the train. He was a credit to the company and the antithesis of this vile woman whose thoughtless remark cost me my good mood. The wheelchair carriage enabled us to have the space needed to ensure our child was safe and happy. We aren’t just lazy parents. We don’t take advantage or lie. We are playing the cards we were dealt and accessing the community just how EVERY person should. Show some respect.

Think people. Think!

I should also mention that on this same day we encountered many individuals who were enamored with our little girl and were so lovely and kind to us. Unfortunately though, those people don’t always get a post dedicated to them. I will write a post some time about the lovely people I meet. Also – This blog is intended to be about any topic… I know i have done a few posts about my daughter now, but I just write about what I feel like at that moment.

(The picture I included is taken from this particular day out where we took my grandma to see “illuminasia”… our daughter absolutely loved it too)

The Day my Life Changed Forever

So this the birth of my daughter is the most dramatic, amazing, heartbreaking, most everything story I have to tell. I suppose everyone’s “birth story” or “becoming a parent” story is the biggest thing that ever happens to everyone. But I want to write down my daughter’s story before writing my posts about how incredibly proud she has made me recently. I have always been proud of her but this last few months have been absolutely astounding. Nothing can prepare you for parenthood, or birth, or anything like this. The world we were plunged into in 2014 truly defines me today, it also accounts for my perspective of the world, my view of the past, my anxiety of the present, and my aspirations and hopes for the future.

I am a mum. I am a “special needs” mum. I am the proudest person in the world. I am an advocate. I will fight EVERY negative view on disability, I will fight to raise awareness, I will fight for inclusion and equality. I will be that annoying person who harps on and on about accessibility to shops and the community in general. I want to see a world where my daughter and every wheelchair user gets the same rights and access to the world that we as “able bodied” people take for granted. Things have got so much better in the world, but we have a long way to go to fight stigma and assumptions. Anyway, I will dismount my pedestal now.. back to the story… ahem.

Me getting pregnant did come as a surprise. I was pretty well adjusted to nights out, playing with lego, playing video games, going to rock gigs etc… I liked my me time and I liked working full time and trying to build a career. My pregnancy was pretty typical… everything went absolutely fine for the whole pregnancy, I was the right weight, I didn’t smoke, I didn’t drink, I did it all by the book… after all.. I was creating a life! I did eat quite unhealthily but I made sure I got my 5 a day and if not that at least lots of vitamins…

Maternity leave began for me at about 36 weeks weeks. Amy was showing no sign of arrival and eventually I had to have a sweep. At 41 weeks and 3 days my water broke. By the way for me it was nothing like what happens in the movies… I wasn’t even sure that was what had happened until I phoned triage to check!! I knew at that moment I was to become a mum in the next 24 hours.

The next day my contractions began. They were indescribably painful. I can’t even begin to imagine the pain I was in. I remember being on all fours in my front room screaming my head off not knowing what to do. Phil rushed home from work to take me to the hospital.

When I got to the hospital they told me I was in the very early stages of labour and that it might be a benefit to me to go home for a while. I said no… I was in too much pain. In retrospect I am so glad I made this decision because if I had it’s pretty certain Amy would not be here with us today.  A thought that fills me with all sorts of pain. She is the Ash to my Pikachu and so on.

I was given some pain killers and was put on gas and air. All it did for me was make me feel nauseous. The nurses/midwives came in and checked on me every few minutes to check her heart beat. All was fine. They were about to tell me I could get in the birth pool if I want. I didn’t really have a birth plan as I had been forewarned by so many that no matter what you plan… fate or your baby will have other plans. So I thought I would just go with the flow.

After a few hours of being in the hospital the nurse came to do a routine heartrate check.. her face dropped.. she left the room quickly. The senior midwife ran in and urged me to get on the bed and lay on my side. I was so panicked and in so much pain I was shouting that I couldn’t… but obviously I obliged.

Next thing I know I was rapidly being transported down hospital corridors in a bed surrounded by surgeons, doctors, midwives, nurses.. I don’t even know. I just remember screaming “please, make my baby safe”. I was in a deep panic and hyperventilating. The surgeon was explaining that I was about to have a category A c-section. I screamed for them to put me to sleep faster. I remember the mask going on and slowly feeling calmer and dozier. I was asleep.

When I awoke I could hear my name being repeated over and over. The morphine has distorted my reality and my first words were “I’m a robot now.” Something I look back on with both a combination of amusement and heartache.

When I was taken to my room I wasn’t aware of all the tubes attached to me, of my smaller stomach, or the fact my baby wasn’t there. In my drugged up state I felt like they were just preparing her to come and see me. Time didn’t pass slowly at all. My mum, dad, mum in law and Phil were there. I chatted all sorts of rubbish not understanding the severity of the situation whilst everyone around me was worried sick.

Eventually they brought Amy in. The situation hit me at last. “She’s very very poorly” said the midwife. “I’m so so sorry. This… just doesn’t happen”. Everyone was in a state of shock. I later learned that the entire staff involved in Amy’s birth endured a long debriefing as it was a distressing and traumatic time for all involved… after all, it was totally unexpected, totally unpreventable.

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Amy was transported immediately to the city hospital for cooling therapy. She had been resusitated for 8 minutes following the csection and suffered a severe brain injury (one that would come to be know as “hypoxic ischemic encephalopathy – grade 3). The cooling therapy would keep her at 33 degrees to help prevent the brain damage spreading further. The next day I woke up and had a panic attack because she was in a different hospital to me. The adrenaline kicked in and I was shouting and rushing round packing my bags. I forgot I had just encountered major abdominal surgery.

An ambulance took us to the hospital. A doctor met with us. “Is there any hope?” I asked… still drugged up and totally unsure of what was happening. The doctor provided a grave expression and told us she didn’t expect Amy to make it through the night, and if she did she would be a “total vegetable” (A term I have come to detest and advocate against very strongly).

The next 5 days were spent in absolute agony both physically and mentally. With each day we saw progress with our little girl as she lay motionless attached to what seemed like hundreds of machines in the newborn intensive care unit. Compared to the other babies she seemed giant… she was the only baby in our section who wasn’t premature. It didn’t seem right that she was here. I remember breaking down so many times “why us?” “why her?” “will she ever come home?”

I remember the time a nurse told us she had done a wee. This was a huge win. Something you wouldn’t even think about as being an achievement.. this was huge. After a few days they started to wean her off the oxygen to see how she coped. After a few days she was off oxygen and breathing for herself. I well up just thinking about it. A nurse said to me “just think how good it will be when you finally take her home.” At the time this felt like a sick joke.. I had been led to believe that she was never coming home. I thought that eventually they would want to switch the ventilator off or that her heart would give in.

She was having constant seizures and we could see on a monitor every time she was having them. It was heartache like you could never imagine, I cannot quite convey just how incredibly hard those days were for us and how we all got through it amazes me. She fought, we fought, and so did the hospital staff.

She needed constant suction (she had no swallow reflex) and already had pnemonia from aspiration of meconium) and was fed via an ng tube in her nose. I was expressing breast milk every few hours to help give her the best chance. I continued to do this for 6 agonising weeks. I have a huge respect to anyone who manages to breastfeed… pumps hurt a lot more than oral breast feeding.. by the end of it I was in so much pain from mastitis and bleeding. 100% worth it. The csection scar hurt more and more as the painkillers wore off. I had a daily injection to prevent clots and wore anti DVT socks too. The scar was covered with a huge bandage. Just getting up to walk to the bathroom took around 30 minutes. At the time the pain was a sore reminder of what she was going through.

There was a day both Phil and I totally broke down. It was because I spent all morning trying to build myself up to say out loud “why doesn’t she move?”. Later that day a nurse said to me “There are good days and bad days. Today I think you had a bad day… but there is always tomorrow.” Those words will stick with me forever. The other thing that will stick with me forever is my respect for nurses and doctors who work tirelessly in highly stressful environments not only keeping people alive, but also helping encourage people who are experiencing a huge shock to the system. They don’t ever stop these nurses… they are filling charts, checking on patients, performing procedures, washing hands, getting meds… endless tasks. I bet when they get home at the end of the day they ache SO much. I hope they also ache with pride at how incredibly amazing they are and know what a difference they have made to the world that day. Seriously. The most inspiring time of my life. I have so many quotes from nurses, “there is always hope” being one of them. Thank you st marys from the bottom of my heart.

When the cooling cot was warmed up to normal temperature we saw her finger twitch for the first time. How we cried. Our little girl was with us. She could move! We filmed that little finger for such a long time. I am now crying just thinking about it. The first time we held her was on day 4… she was still fully ventilated and it took the nurse 45 minutes to get her safely out of the cot and into our arms.

After a few weeks she got transferred back to our local hospital to the neonatal ward. When she was about 4 weeks old she made her first sound – a cry. We were amazed. When we had met her pediatrician for the first time she asked me what concerns I had… one of my main ones was “how can she tell us if she is in pain?”… well, the cry eventually came and she showed her first signs of communication. We were amazed. I remember telling the doctor that ALL I wanted was for her to be happy and have an excellent quality of life… and this is still true as ever. Fortunately she IS happy and DOES have an excellent quality of life.

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At 5 or 6 weeks old she was okay to come home. We were so happy and so scared!! We were armed with tube feeding supplies, medications, and a suction machine.

So that’s sort of it. The shortest version I could write. There is so so so much more to the story than this but I wanted to get this out there for people following this blog who don’t know me or my story. I will come back to bits of this story in future entries as so many things happened that shape how I think of the world today and how I operate in this entirely new world.

Amy is now over 2. She has severe quadriplegic cerebral palsy… she has mixed cp meaning her muscle tone fluctuates… sometimes she is very stiff, sometimes a bit floppy… she has constant dystonic (uncontrolled/involuntary) movements and literally does not stop moving unless sleeping. She is still 100% tube fed but via a gastrostomy button (on her tummy) and is fed 24 hours a day on a medicated formula via a feeding pump. I will no doubt discuss that surgery on here, and also the many feeding issues we still encounter to this day.

She has progressed so much. In spite of her restrictions her body forces on her… she is an incredibly bright little girl. Cheesy as it sounds she surprises us everyday with her tenacity and feistyness. Everyone who meets her adores her. She really is the best thing ever to happen to me.

I do still suffer PSTD from those dark days.. I do still get flashbacks. But i am getting better. I once collapsed at the sight of a surgeon a year or so ago because it gave me an unpleasant flashback. I am getting better at these things. Now I can focus on where we are now and whilst we do have a lot of challenges and hard times… we can smile.

I hope everyone can appreciate that this was a particularly difficult post for me to write. I know it wasn’t well worded or anything, I just typed and typed and told it exactly how it was. It has been hard reliving it in this amount of detail as usually when people enquire about Amy’s story I only tell a short version, kind of a default response I have made. This post made me relive every room, every conversation, every thought, just everything.

A huge thank you to my amazing boyfriend Phil, my parents, my mum in law, my grandma, all of my family and friends, st marys hospital, stepping hill hospital.. and the therapists who continue to believe in and work with amy and I today. Most importantly thank you Amy for pulling through and for continuing to make my life a happy one.

For anyone interested in keeping up to date with amy and her antics.. search “amy rose’s army” on facebook.

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When healthy eating, exercise, socialising and nature don’t work

What’s more interesting than a blog post about complaining about tiredness? Probably just about anything else at all. But sadly that’s all I got right now!

Recently I have been absolutely fatigued. I know I have a lot of broken sleep but even so, no amount of naps, extra sleep, time alone, socialising, exercise, healthy eating, water drinking etc is making an ounce of difference. I don’t think I’m anemic right now. Who knows.

It has me wondering – is this just how achey I will always be? Is this a normal level of achey or am I just a whingebag? I feel so exhausted. My life is pretty non-stop and even when I get time to chill I find it hard to loosen up and unwind. I am so tense and on edge.

I am wondering if I have a hormone issue or if my blood disorder (ITP) is affecting how I feel. The last week has been characterised by my constant making of fresh homemade veg soup. I was hoping that kale, spinach, peas, cabbage, swede, carrots and whatever else would help me feel more energised.

I keep considering going to the doctors about it but I know they’ll just say it’s my lifestyle as a “special needs parent” or that my anxiety is making me this way. I would rather not have a blood test as it makes me faint, but I’m wondering what else to do.

I walked 4km today in the hot weather with Monty.. I know that isn’t far but when you’ve spent the morning bathing and dressing a very wriggly little girl and hauling wheelchairs and bags about etc you know that you’ve had an active day. This morning was so stressful. The little one woke up in a horrendous mood and wailed the entire way to nursery no matter what I did. In addition to this the traffic was bad, her feeding pump was alarming and beeping away (I couldn’t do anything about it so just had to endure it!). So I was sat on the playground floor trying to replace and prime the giving set and thinking how exhausted I was.

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I am sorry to complain. But tiredness makes me this way. I know there is so much worse going on at the moment but knowing that doesn’t help. I am so worried about a friend of mine, and I am worried about an issue my parents had with their house and someone frauding them etc too. I used to get really bad anxiety about a burglary. I am not bothered by the theft of possessions but more the prospect of violence. I sometimes got so bad with it that I would purposely put tables right in front of the door so that if someone did get in they would instantly fall and I would have advanced warning. Ridiculous I know. Irrational I know. Sometimes people don’t get that about anxiety. They think you aren’t aware of how ridiculous you’re being. But no, we fully get it, thank you. We are sorry.

Sorry to be so negative, sometimes I do just need to let it all out and I am sure there are others that feel the same. It’s hard to enjoy myself and it’s hard to feel like your life is becoming about appeasing others.

I wonder is my mind in overdrive and it is having a knock effect on my body. I feel like I am overly worried about the future. I don’t know. I am not doing a good job of explaining myself today. I recently have been immersing myself in nature a lot more, and fresh food… in a desperate hope that it will “fix” me. It would seem that no amount of beautiful blossom trees and other people’s dogs are helping.

I will leave this here. I don’t really have a purpose for this post, I just felt like writing it.