Pregnancy & reflection

This pregnancy is golden, I am nearing 6 months and it feels magical everyday.

Yes I dip in and out of sciatica, yes bedtime is the most difficult part wrestling my 4 year old into her pyjamas, to have her teeth and hair brushed (worse part!), while we read 100 books and she delays going to sleep for as long as she possibly can.. Then I sit on the beanbag next to her bed, sing her to sleep every night without fail and struggle to get comfortable and get myself up while she’s snoring away. Hoping on getting a nursing chair and temporarily having it in Polly’s room so bedtime is easier and I’m not sat on the floor - but we deal with what we have!

But I am enjoying it far more than I thought I would, feeling the baby kick and move feels surreal still. Time is flying and I feel so unprepared but ready to meet them at the same time. It can’t come quick enough but I also want time to slow down so I can enjoy this time being pregnant.

I had the realisation the other day this will be the last times it’s just me and Polly, doing all the things we do together. When we spend 13/14 hours of a day together, just me and her and I felt incredibly guilty that is going to change for her. But I know like all the children, and like I did when my sister was born, they adapt, you adjust as a family and they forget about it. That’s very chill of me to say because deep down I am so scared of the big changes this will be for her. How I won’t be able to be so available for her, I am her main caregiver. Hopefully my fiancé D will get as much time off as possible with paternity and holiday, so we can all adjust. Although Polly is 4, she’s not a typical 4 year old, we have been working on her independence all year and another 4 months time she will have even more. That makes me so proud of her!

In the same breath on the days like this weekend when she’s been poorly, I think gosh how will I manage with the two? How will D manage with his shifts, his working pattern is all over the place, sleep is all over the place, how will we do it? But I’m also certain we will find our way.

This baby is a blessing, a gift, and here for a reason. I believe they will heal us in ways we never knew we could be healed. Being pregnant with baby number two, has made me reflect so much on my pregnancy with Polly. I know I did a few blog posts during that time and maybe I’ll read over them again soon, but I don’t feel like I shared it all? Or as much as I could have done. Maybe it’s having a typical pregnancy has put everything into perspective. How much we actually went through, from pregnancy to birth to the first year and then some. Our journey was so out of the ordinary, well not rare but just not typical. Lucky still, and even though I grieve the time we did have, in the same breath I always hold gratitude. I really do believe that’s what has given us so much luck. Is to be grateful for all that we do have, that when I look at our journey with Polly and as parents, I often say to D ‘we really are so lucky you know’.

Having a typical pregnancy now and looking back on when I was carrying Polly. From the get go at our first 12 week scan we had “bad news”, we had shock, we had uncertainty, we never felt joy or happiness that most feel at the first scan. Or relief when you see the little baby bean wriggling around on the ultrasound screen. That overwhelming and surreal feeling, where you can’t believe that tiny being is growing in your body. We experienced that briefly for the first few minutes, squeezing each others hand when they introduced Polly on the screen at the 12 week ultrasound. Then the quick “everything looks good, but your body is showing signs of Down Syndrome so someone will take you into another room to explain what that means”. I will never forget how blunt that was, no compassion, no explanation, just like happiness had been zapped from the room. Then we walked round to another room in silence where we sat and waited for the fetal medicine midwife in silence because neither of us knew what to say.

That time was robbed, but it’s been given back and for that I am truly grateful. Our first scan in this pregnancy with baby B was just what we needed, it was positive and I went in fully equipped with telling them our daughter has DS, we feel nervous etc etc. Just to experience a positive scan felt so wonderful, leaving the hospital both uplifted and excited. Something we never got first time round. Then to have our 20 week scan, which again I felt extremely nervous over that 2 month wait and not feeling any movement yet. To then see them on the screen, an in depth scan, watching them wriggle and roll, capture their perfect little side profile. My eyes just whelled up.

I grabbed D’s hand and I just felt overwhelmed with happiness. During that scan where they do the checks on the baby on all parts of their body - I also understand these are only 50% accurate. But it was just enough to put my mind at ease. Not that I wished anything like “I hope this baby doesn’t have Down Syndrome”, because a couple people have asked that and when they did it was the first time I really thought about it. I just pray that my baby is healthy, they are healthy and well and are thriving.

In all honesty after Polly I have always been triggered by other people saying about their own pregnancies “I just hope the baby is healthy”. I have always taken it personal, assuming they mean “I hope my baby doesn’t have Down Syndrome “. It’s been a trigger for me, but now I am saying those words “I just hope the baby is healthy” and it’s not what I thought it would mean.

We have experienced the health side, been so involved in the medical world with a young poorly baby, that’s left us with a lifetime of trauma. It’s changed us in ways I may never be able to explain. That’s what I don’t want, again, that’s what I can’t do , again. Also why we put off trying for another, both terrified from our first experience. Also both still terrified but mostly hopeful that everything will work out. I’m a dreamer and D is a realist, I know he is putting it to the back of his mind whereas I am trying to handle it as I go with hope.

At our 20 week scan this time, when it got to the heart the woman took her time but also didn’t speak, whereas she seemed to have spoke to us more during the rest of the scan. I squeezed D’s hand harder and felt him hold mine tight in response. It felt like we was both holding our breath. Tears started to fall down my left cheek as my head was tipped looking at the screen, it brought back memories of all Polly’s heart scans during my pregnancy with her. I felt the ache in my chest and wanting to cry out from the pain from that. Eventually she said all looks well, we both felt the relief. She also explained how they cannot detect everything and it is 50% chance of picking up a defect. That was just enough for me to feel settled really. We left feeling positive, everyone wanted to know how it went and “everything okay?” was the question I got asked time a lot and still now. Of course people are just making sure all is going well for me and the baby. I know what they mean and I always say, everything looks good it was a really positive scan. That’s my boundaries of we don’t need to discuss this further!

Yes there’s a chance the baby could have Down Syndrome, from my knowledge and I could be wrong, but mostly because my body was able to carry a baby with a genetic condition to full term. A lot of babies with an extra chromosome (Downs Syndrome) fight incredibly hard to make it in the uterus, the fact my body and Polly worked together to make that happen. It’s rather special!

First trimester after trauma & loss

Trigger warning - pregnancy and miscarriage*

I forgot how nerve wracking it feels to be pregnant, I think I felt this first time round with Polly. The lead up to the 12 week scan is a whirl wind time, you don’t feel pregnant, even if you have symptoms and your boobs have ballooned, you still second guess yourself every day with the “am I still pregnant” theory.

In Polly’s pregnancy I remember thinking what if something is wrong with the baby, and I really hate that term now “wrong”. In my eyes there is nothing wrong with Polly but what I was referring to at the time was her health. I’m sure we all have that worry, but unfortunately I was right! So this time round, my worries feel they have multiplied and so has my knowledge. I’m watching Grey’s Anatomy every night where people die every episode or babies with serious medical issues that have to be terminated keep showing up, let’s just say it’s not helping my anxiety but my pregnant self can’t get enough of watching it still and balling my eyes out every time. This time my hormones keep telling me, but what if that’s me, what if this is all preparing me and it’s a sign. My logical self (I don’t have much of that) is telling me to breathe, calm and say everything will be totally fine. I can feel my anxiety rising as I type this and I’m having to take a breath.

I almost knew instantly that I was pregnant but after trying on and off for a year after my miscarriage in Summer 2021 which took some time for me to fall. Why do we always think it’s going to be wham bam you’re pregnant mam? Let me tell you… this life creating force takes time! The right time maybe, very difficult to believe in some circumstances and situations. For me, I’m at peace with the loss and I can see how it evolved me and that I had my biggest year of personal growth. It doesn’t take away that it still hurts to think of, or going back to the day I miscarried on the toilet while Polly held my hands and jumped up and down smiling & laughing with no idea what was going on. I hid the pain well, I don’t really remember much after that but I was fortunate to be early enough I needed no intervention and it passed naturally. I am grateful for that. Hospitals bring back so much trauma for me and the thought of going for me and alone… I can’t even entertain the idea.

1-2 weeks pregnant the test said, it was fresh! I did a test after a counselling session and saying to my counsellor “I just think I can’t and won’t get pregnant and I have to accept that”. I believed Polly never would have a sibling and truth be told, I was doing it for her, so that brings a whole lot of emotion. I couldn’t quite believe that it said I was pregnant, after so many failed pregnancy tests I had done that year. I was in shock! I didn’t know what to feel, just shock!

Fast forward to when I started experiencing symptoms around 5 weeks they kicked in STRONG! I felt completely and utterly wiped, getting up in the morning was difficult but non negotiable with Polly, I would lay back down on the sofa downstairs doing the bare minimum. Feeling like I couldn’t physically move! Most of the day I felt like that and I managed having her Dad there on shifts with work so sometimes there during the morning/ afternoon and sometimes there in the evening to cook dinner. Eating was a whole battle in itself, food aversions were strong. Smells offended me then put me off food, the fridge and just opening the doors to it made me feel ill. Trying to cook a nutritious meal for your three year old but you feel incredibly weak and sick, well I don’t know where the push comes from but you do it for them!

My diet and mostly Polly’s too has consisted of beige and cheese, I always seem to go to a basic kids school lunchbox mode. Like oranges are my go to, at least 1 a day, craving that vitamin C which is good and the only form of fruit and veg I can tolerate. But cheese, gerkins, yoghurts, anything dairy related and chocolate has been consumed by the gallon. Which naturally I feel guilty by! I’ve been miserable as hell, moody, unsociable, you name it all the good qualities one wants to spend time with in another person. I don’t throw up, I didn’t really with Polly maybe only from teeth brushing first thing. I’m just nauseous most of the day, and I gag at everything. Random stuff, like getting Polly out her car seat I’m wretching. Poor girl, hope she doesn’t get a complex! Food shopping I get anxious and start wretching into my jumper whilst walking in. All these wonderful and beautiful moments in the first trimester that get overlooked! It’s okay to want a baby and get pregnant and be totally miserable!!!!

Shall I say that again? It’s okay to want a baby, get pregnant and be totally miserable! It’s called HORMONES and we have zero control over them and how we’re feeling. You have no idea how you’ll feel until you’re in that position. Then it’s done, the feelings are there, emotions are high and you feel depressed. For a good two months I felt depressed, like really really low, nothing would raise my vibration, I couldn’t see much joy. I did feel the same pregnant with Polly but it felt really intense this time - maybe because it was more fresh and happening in current time? Fear and anxiety everyday just creeping up on you, insomnia during the nighttime and laying awake from 3-5am playing out what if scenarios in your head. Having to constantly remind myself every 20 minutes after conjuring up a whole conversation I was going to have with a person about a particular matter that bothered me once, and remind myself that this is hypothetical and not actually happening and to go back to sleep. That’s all normal right? I believe so!

The fear during pregnancy, during the first trimester in particular when there are so many uncertainties is overwhelming.

I hope to keep blogging throughout this pregnancy, although it’s very scary I feel very blessed I get to do this again. Hope it helps someone else to feel their feelings are valid during pregnancy, whatever you’ve gone through!

The affects of Instagram

I feel like my title is a dissertation subject at college that I’m writing, but bear with me it’s a good one. Being a new year I’ve set myself a resolution or we could call it a goal if you prefer. It is to consciously take time away from social media, particularly Instagram.

I run two accounts, my personal one and my work account, the more I spend on my personal Instagram the less I spend on my work account. Running the two is hard to keep balanced especially as I am sharing a lot on my personal. But I would much rather put time into my work account, it’s even more difficult to be seen on people’s feeds now especially for small businesses.

The affects that social media has on my mental health, or on anyone’s mental state for that matter is huge. Times are constantly changing, I think we need to be so aware of what we are choosing to look at.

6 years ago when Instagram was just becoming a thing, I followed people like my friends, people I knew from school days and fitness accounts. Lots and lots of fitness accounts, I was barely working out anyway but the type of mindset I was in was a bad one. I had in my head that I needed to look like these girls who completely dedicated their days to working out. Before I go on let me say I think it’s amazing that people can do that, I would love to be that person. But I’m not, and it made me feel even worse about myself that I didn’t look like that. So everyday when I woke up I would reach for my phone, scroll on Instagram and see girls with these incredible physiques and that was engrained in my brain before I had even got out of bed. I was basically setting myself up for the day to feel rubbish, it didn’t motivate me to do better it had the opposite effect. Beauty and fashion bloggers, supermodels, models in general, I was following all these kind of accounts… why? To make me feel more inadequate about myself and wonder why I didn’t look like those people. Thinking that they must be so happy because their lives seem amazing, you know the kinds, the ones that are in an infinity pool in the Maldives or the jungle in Bali with their boyfriend who has just proposed with thousands of rose petals everywhere. You get the jist, it seems ‘perfect’ and you wonder why your boyfriend hasn’t done that for you. Maybe he doesn’t love you enough you think? We’ve all been there with thoughts like that, it’s what the internet does to our brains. It makes other people’s lives seem better than our own.

The difference in me then to now in terms of social media is I don’t follow any accounts that don’t serve a purpose to me. One day I stopped following all fitness accounts and I cringe now when I see any pop up on my feed. I mean if those accounts motivate you to do better then yes absolutely go ahead, but if they have the opposite affect and actually make you feel bad about yourself. The bloggers/influencers whatever you want to call them that I do follow - there are very few - I find them relatable or I like their fashion or hair & they are quite down to Earth. Obviously now I’m a Mum so it’s good to follow people I find similar to me. The honest accounts, the ones that say yep I’ve had a pretty crappy day today, or the kids have been too much today and you can go ‘yeah I feel you, I’ve had those days’. I love body positivity accounts, the ones with an imperfect perfect body, that normalise normal body’s. I’m allllll for that, and the every day life of being a parent. All these things relate to me, and of course the accounts who advocate for Down Syndrome.

However, there is a lot of negativity in that for me, with following the DS accounts. I may be the first to speak up about this, someone may have done before me but I feel it’s something that isn’t said. I struggle to watch a lot of the accounts & Facebook groups. Right now this moment in time I’ve deleted Facebook app off my phone too. It’s become too much for my head to handle, I am protecting myself by not looking at any of the groups. It’s amazing to see all the wonderful things children are achieving and doing, always puts such a smile on my face. I just know a child with DS is not limited to anything, that they can achieve whatever they wish with a little bit of work. It is the health side for me, seeing posts about children struggling, whether they have been in hospital, or heartbreaking to say death. We all have our own stories from birth to now, and sometimes it does help someone else sharing them. Sometimes it can be a trigger for anxiety or PTSD.

I find I fall into a rabbit hole of reading up about the affects of vaccinations and medications for children with DS, then the absolute fear and anxiety that goes on in my head is too much. I feel ill from the worries and being torn with what I agree with, or what I should agree with. For someone who has dealt with anxiety since a young age, having a child with health needs does make it spiral for me at times. So with the likes of social media & all the benefits it does have because there are plenty, it comes with some very hard and serious disadvantages for others.

Both men and women are affected by social media, whether they are completely aware of it or not. A lot of the time I think it has a subconscious effect on us all if you do use it. It could be that you’re envious of someone else’s body, hair, looks, home, relationships, the way they parent, the skills they have. The list is endless. Just remember Instagram is a highlight reel of that individuals life, of course there are accounts out there which are very different to that. One’s that are in fact showing a very raw insight into that persons life, ones which I have seen are those who have children who may have health conditions and are very sick. For those particular people they don’t show highlight reels, well in a way they do and may show a brief moment where their child is happy and playing. That could be the only moment that day which their child engaged with them, and it’s a highlight. But all those other minutes of the day where the parent may have felt helpless or engrossed in their hospital life are not shown. The thoughts and feelings that run through their head and the emotionless look on their face is hidden from the camera.

The same goes for those people who you may feel envious about. The one’s you go on Instagram to look at but hate at the same time, because people do that, I don’t know the science and the why’s behind it but they do. Or the people you follow and don’t hate on but wish you had a day like their’s, that your day was mundane compared to their’s. For example, If you are having a rubbish day and looking through someone else’s highlight reel, and you skip from story to story and think wow my day really has been shit. You are watching stories of this woman who’s been up since 5am, cleaned the house, washed, dressed and blow dried her hair, got all the kids dressed and out the door with an amazing packed lunch for a day full of fun to meet friends. But what you don’t know is that she’s not slept a wink all night because her husband has been having an affair and she knows. That is a made up example but I assure you it happens, and I’m just using the husband as an example that although many lives seem perfect but they are not.

You can have all the riches, a beautiful home, your health, a family, and a job but still not be happy. That’s down to that person to find out why they are not happy or seek professional help if it’s deeper than that. But to the online world they may have millions of people envious of their seemingly perfect life, but that’s not going to give them happiness.

My point is to focus on you and you only. We are all guilty of it, I’ve had to check myself a few times particularly when seeing or looking at other people’s houses online. As we are in limbo waiting on our own home and having been living at my Mum’s for nearly a year.

At a time like this when the country is in yet another lockdown, many parents are having to homeschool again, and some juggle working as well our mental well-being is so important. Many of us are in a fragile state, and having the pressures of being online and keeping things looking perfect is too much. I know for small businesses like myself that keeping your online presence going is difficult especially when you’re demotivated and feeling deflated. Protect yourself, take time offline, it will be good for your mind.

For some the internet is an outlet, one that has saved them for their own personal reasons which is amazing. There are many positives to Instagram, I started using it to document my difficult journey from pregnancy to motherhood. It’s brought me a whole new community of support, one that still amazes me. It’s given me an amazing friend, one I never knew I needed. It’s made me find normality in a lot of things during my motherhood journey, I’ve focused on the honest accounts and ones that I can relate to rather than ones that I aspire to be. I love that my own platform I can use to ask questions, get advice and always get lots of lovely replies. My account was about my particular journey and advocating for the Down Syndrome community, but it’s not just about Polly it’s about me as well. I just use it according to my mood, and what I feel like posting. Although Polly is number 1 on my gram, my followers like to hear from me too which I love so thank you for always listening!

The quotes I have put in that was left on my Instagram account from some of my followers, were just some of the responses I got and they are just awful and heartbreaking to read. I feel like I want to reach out to every individual to help them, but I am trying to do that on a wider level. I hope that by reading this blog it makes you realise that so many of us are in the same boat with social media. Whatever it is that we focus on looking at in others and feel like we lack in ourselves, please know if you are that person you are not alone. That the person you are looking at may have something they feel unhappy about and that they are lacking in. It’s a vicious circle, I really hope that you can understand that. Maybe it’s time for you to take time out of social media, the hours you spend scrolling can be put into something productive. Something that serves you a purpose and you will soon see those doubts you have about yourself disappear. You don’t need to post any photos of productivity and what you have been up to, it’s not needed.

You do you, and watch you shine.

I asked my followers what affects does Instagram have you on mentally/physically & these were some of the many quite heartbreaking replies to be honest.

““lack of confidence”,

“makes me dislike the way I look more and more on a daily basis”,

“I feel anxious and paranoid about what I post and who is looking”,

“pressure”,

“it drives me crazy!! I loose sleep over what to post next or if it’s interesting/relatable”

”I forever compare how many likes my photos get compared to others”

“that I don’t do enough activities with my children”

”men think we should look like Instagram models”

“it’s so fake”

“pressure to always look good and dolled up”

”being separated from my husband it’s a reminder of what I no longer have”

“makes me feel so shit about myself as a woman, mum and girlfriend”

”comparing - thinking everyone life’s perfect”

“I feel I have to be perfect all the time”

“sometimes makes me depressed especially with lack of accessibility e.g captions”

“makes me think I’m ugly”

“that I am never enough and can’t ever keep up””

2020, what a year but we have some good news…!

Polly is tube free!!! 9 months spent pretty much inside our homes for nearly the whole world - wow what a year! A tough one for us all, each person with their own personal reasons. It’s felt incredibly hard mentally for me, moving into my Mum and step-dad’s house in March with no idea we was going into lockdown. So we was all in the house together, 5 adults, a baby and a dog. Then my brother came home from travelling making it 6 adults, very crowded and all the rooms were filled.

My main goal became tube weaning Polly, all day every day was food - feeding and drinking. It may sound like a typical day for most parents, especially those who have children who “don’t stop eating” or those who also struggle with “fussy eaters”. The weaning stage for any parent I think is stressful, the preparation of food knowing most of it may go on the floor, down their clothes/bibs or it just being a waste. The testing and trying out, I have heard many parents say it has been one of the least enjoyable parts of parenthood is weaning.

I think Polly was around 6/7 months when I tried her on purée for the first time, our feeding specialist hadn’t advised us to but I just went with the notion of what I thought was best. It was difficult, it became immediately stressful for me. Of course she sensed that I was stressed, children can and I felt it at every mealtime. She would just push it back out with her tongue, it was as though the coordination wasn’t there. But then my mum would feed her and she would eat! Maybe it was down to me being or feeling stressed about it.

At 1 years old we had a video fluoroscopy done at Great Ormond Street Hospital, this was to confirm whether she had a safe swallow or not which came back that it was safe! Hooray good news! We was over the moon with that, knowing we could actually push her more with drinking and eating. We had held back so much as we wasn’t sure if her swallow was safe or that she was aspirating - the liquid going into her lungs. So we started to push her more with drinking from beakers, we did try bottles but felt like that ship had sailed and also at 1 years old she didn’t need to have a bottle anymore. I did feel very sad over the fact she wasn’t drinking from a bottle, just missing the typical baby stage but then I suppose some baby’s don’t drink from bottles at all.

March came and we had made the decision to move into my mum and step dad’s house while we looked for our first home to buy, helping us save more than renting. We was so excited at the thought of extra help and maybe even going out in the evening for dinner, the cinema, or even a drink! Thinking that once the baby was down for the night my Mum could just watch her. Oh but what a short lived memory that was!! Two weeks after settling into our new temporary home the whole country went into lockdown! Ha! Couldn’t make it up could you!

So pumping on adrenaline at this idea that nobody had work, as a household we thought we could do more family things - board games, films, more help with the baby & most importantly weaning Polly onto solids. Let me just say that 9 months on from this idea I think we have watched maybe 3 films as a family and haven’t played one board game yet! The novelty didn’t last long at us all being together, I became stressed quite quickly over Polly’s meal times from the amount of people in the house. We had gone from just Dom and I taking it in turns, to another 3 people and a dog distracting her when she ate. It was impossible. Polly was much more interested turning in every other direction but to the food on her plate. I was worried about her developing a feeding aversion as I was trying to force the food into her mouth at one point & it just became quite a negative experience.

Dom went back to work (thank God) and I tried breakfast, lunch and dinner every day on my own. I didn’t give up, I prepared and tried every day with meals whatever they were, in the hope that Polly would eat them. I started to relax a bit. I tried to change my mindset that she wasn’t going to eat, rather than expecting her to eat. I made sure nobody walking past was distracting her, it’s just force of habit to pay a baby attention and not ignore them. But needs must! The TV became her distraction, we would pull up the chair in front of the TV and feed her that way. A bad habit to start mind you & completely going against what our SALT (feeding specialist) recommended. But it was the ONLY way she would eat at that point so I wasn’t going to stop doing it just yet. Polly was doing so well, then teething started again.

The dreaded teeth!! For those of you who don’t know it is also one of the worse stages of the first few years. Imagine growing teeth - ouch! For many babies and parents it’s sleepless nights, refusing to drink or eat because of the pain. Sometimes nothing helps! I might do a separate post on our teething journey once it’s complete and everything I used to help Polly. Teething when you have Down Syndrome is so much harder! Just another hurdle for us, teeth can come in much much later with DS. I read a post the other day on Instagram that said something along the lines of, if it lasts longer than a day it’s not teething. Well incorrect, let me tell you Polly teethed for months before some of her teeth came in. Waking up all night, crying, also not eating or drinking much. It can be so much longer and harder, difficult to watch as well. You question when is it good to give Calpol or Nurofen, because the way they can carry on you feel like it could be daily for a few weeks! Calpol has never worked for Polly, paracetamol in general has never touched her, so we use Nurofen which doesn’t deplete her glutathione (look that up!).

Throughout this year I spoke to her SALT once a month. It became very repetitive, not really much feedback from them for a while until I sent video’s of Polly eating and drinking to another team member. They gave me so much constructive feedback that I was able to make some changes on how I fed her and it worked instantly. It didn’t mean she was properly eating but she did do lots better. Then teething started again for a good few months and when I spoke to her SALT it was always “nope no improvements she is teething again”. It does become an obsession because you are counting every mouthful they have, wondering if it’s enough.

We then got a new dietician back in August - he is the person that focuses on what Polly eats and the SALT woman is looking at how Polly eats. The new dietician was a breath of fresh air! He gave us the push we needed and said ‘let’s give Polly the absolute minimum amount of calories with her milk down the tube, in the hope it encourages her hunger and she eats more’. So it became two feeds a day, 600ml of milk (21 oz), 300ml in the morning and 300ml before bed. I had never taken this plunge before because I was so worried about her starving, but looking back on how chunky she was I don’t think I had anything to worry about! Then in between feeds would be food and see how much she ate. She started to get the hang of it more, then we would get a set back with teething or she just wasn’t hungry enough. I also tried messy play with food, brave I know. I set up a paddling pool sat her in that and tried jelly, custard and spaghetti on different occasions so she could become

I set a new routine of waking up doing her milk feed through the tube, like you may do with a bottle in the morning. Then breakfast couple hours later, then lunch then dinner and milk before bed. Sounds straight forward, it wasn’t. I was particular about what plate and spoon was used thinking it worked once so it will work again. But that day Polly may just spit it all out and we got nowhere. I would stress, Dom would worry she is starving so say just give her milk and I wouldn’t give in. But for an easier life sometimes he done her milk instead of food which didn’t help. Every meal time was stress.

Then things got better, I don’t know how but she could eat, I knew she could. Come August she had been eating solid foods like sandwiches, toast, pasta, and she actually hated anything puréed at that point. I would break things down into small pieces, but there wasn’t a problem with having to mush it down just making sure the pieces were really small. I wanted a referral for a peg - a tube fixed into her stomach permanently. This is a decision I didn’t take lightly, I looked at all the pro’s and con’s. The wait list can be very long, and we wasn’t actually making much progress food wise so I thought to put her on the list and if it comes to it and she no longer needs it then amazing. Then of course if she needed the peg it can be used just for medication and fluids, we can keep on feeding her food all day. It did mean an operation and her being put under again. Which runs its risks. I was looking at so many options such as feeding programs (which cost a few thousand!!! Not an option available to us at that moment), the fact she may have a tongue tie and noticing in actual fact she has a lip tie. I never even knew lip tie’s existed!! So I was on the phone to GOSH again for a referral to ENT, we had an appointment quite quickly actually (benefits of COVID) they confirmed her lip tie. They didn’t confirm that it could be affecting her eating, but it was a possibility and I was adamant that it was! So she got put on the list to have it cut, again she would have to be put under which I was fine about at the time.

Fast forward to October, her eating had improved, she could eat, she just chose not to sometimes or to just spit it out. Polly’s tube was being changed every couple of days at this point, I was having to pass it myself which I have always done and some days I would just leave it out till bedtime. It meant she didn’t always have her full calorie intake, which was again stressful but I needed to push her and she did eat better without the tube! So, October was a big month of change, she was booked in for tests at GOSH which needed to be done before she had her peg inserted. It was also the month we had her meeting at a mainstream nursery I wanted to send her to. The meeting consisted of a community nurse attending to give training to the staff on Polly’s tube and what they had to do to feed her. Again, stressful for me and handing over that job is nerve wracking because it’s something I have always done. But I left there feeling confident in the staff, they also had to have a health care plan in place for Polly’s heart medication.

The following week Polly started her settling in, which meant being at nursery every morning Monday - Friday. I was sat at the back of the room for the first few days watching her, which was so nice to see just the whole set up and how all the children are together. I was surprised at how clingy she was being with me though, something I never imagined she would be like as it’s not in her nature but it’s a big thing starting nursery!! That was the last week of October and Polly was there for snack times meaning all the children were sat on two tables facing each other to eat. I just knew that would only benefit her watching other children eat. Saturday came, and we was sat down for breakfast with Polly in her high chair. I think the tape on her face was loose so she hooked her finger round the tube and pulled it, I sighed and said right it’s coming out then. Which has happened many times before, I would just put it back in before bedtime. I can’t even remember how much she had for breakfast or if she even ate it.
Dom was off work that weekend, it was 31st October - Halloween and we was celebrating at home (of course) by all of us dressing up and eating party food. Dom said let’s just leave the tube out tonight, if she wakes up because she is hungry then we can put it back down. I was reluctant to do it but I agreed, mostly because I was worried about lack of sleep again that I would get if she woke up in the night. So dinner time she had party food and I have never seen her eat so much! I was stunned. She was eating like she had never eaten before, it felt very overwhelming to see. Just an incredible feeling of pride. That night she slept through, the next morning Polly ate her breakfast for the first time in months. Like she actually ate it like she was hungry. I couldn’t believe it. I didn’t want to hold my breath and say yes she is eating leave the tube. We said give it 48 hours and see.

Saturday 31st October was the last time Polly had an NG tube inserted. She has only improved with her eating since! Every day was wow another day without a tube, and now it’s been 8 weeks. 8 whole weeks without a tube, and she even drinks milk from her straw cup sometimes. She has a thing where she spits out the last bit of her drink which drives me insane, sometimes it’s where she forgets to breathe when drinking and instead of swallowing the last bit she spits it instead to breathe out. I believe nursery is exactly what she needed for so many reasons, seeing the other children eating she just wants to copy them. She has even started to feed herself at 22 months old, which may seem delayed to some parents but to me it’s not about her age it’s about the fact she does it. She is learning and after being tube fed for 20 months of her life it’s a huge huge milestone.

I had all of Polly’s tube feeding equipment collected just before Christmas - her pump, containers, tubes, giving sets and syringes. 10 boxes and two bin bags full of equipment. It was a moment I needed to document. Mealtimes have gone from 1 hour of sitting and eating to sometimes 15 minutes & she has eaten all her food. It’s all dependent on her mood, I’m a slower eater and her Dad is the fastest eater I have ever seen. So we shall meet in the middle!

Although 2020 has been a tough year for the whole country, and for us as a family with the hurdles we have faced again health wise with Polly. My main and only goal for this year was for Polly to come off the feeding tube by the end of 2020. So many times I didn’t think we would get there, particularly in September with just a few months left I didn’t think it was possible.

Yet here we are in December 2020 and Polly Blossom has been 8 weeks tube free, all equipment has been collected. There’s no going back, only forwards for 2021!