Our cleft story

Let your smile change the world, never let the world change your smile. It’s Cleft Lip & Palate Awareness Week, and these photos tell the story of Stanley’s first op, at 3 months old. His first, and second, smile.

I miss that first cheeky smile, the first smile that we fell in love with, a smile I will never forget, a smile that we didn’t want to let go, and a smile that I hope he is proud of as he grows older. Our Cleft Nurse always told us to take photos, take plenty of photos, and we certainly did! Our house is surrounded with reminders of this first cheeky smile. The emotions you go through regarding the change in appearance is immense. It was something that people tried to prepare us for, but something that we could never imagine until the little man arrived.

Although we knew it was the right thing to do, there was a part of us that didn’t want him to have that op… we didn’t want him to change. We treasured every cheeky smile of those first three months, and handing him over to his surgeon, Jonathan, was the hardest thing I have ever had to do.


Stanley’s smile was in his hands, and those hours that we waited, hours of pacing up and down the hospital corridors, they felt like a lifetime. But Jonathan is an incredible surgeon, and an amazing guy – Stanley couldn’t have been in better hands. We are super lucky to have had a second cheeky smile to fall in love with all over again.

The struggles of introducing a new sibling

I love this little man *so* much ‚̧ I cried twice tonight when he went to bed. First, we spoke about his day (as we always do at night!), and twice he told me “there was no room for me” – both this morning in bed, and this evening on the sofa. I promised him that there would always be room… and his response? “Oh thank you mummy… you’re my best friend” ūüėĘ

We have had “it’s not fair” more than I can count today. We have had “I want to go back to that other house… that green house… with no babies“. We have had “I want you in here mummy“… and him shutting the doors out on everyone else. Daddy has been “the big bad wolf” all day. When looking back at pictures of Stanley, he kept saying “I’ve lost my mummy and daddy“, because it was just a photo of him on his own. We’ve had two sets of visitors today, both of which he told “my baby cries a lot“!

On the other hand, he has been the most caring and sweetest of big brothers. Stanley hears Nora cry and he says “oh! My baby is crying! I need to check if she is ok!” – he gives her kisses and cuddles. He strokes her head. He asks for her to be put in his arms. He asks for her to be put over his shoulder so he can “pat her back“. He always makes sure the music is playing on her snuggle nest because “that will help baby to sleep”. He makes sure she has her taggy, and various other things. He found Sophie the Giraffe and gave it to her. He talks to her when she cries and tells her “it will be alright“. He has been super proud to show her off when we had visitors!

But despite the good, which I’m sure far outweighs the bad, I couldn’t help but focus on those little things that he has said or done today, that have made me feel so guilty. Wishing I could do more. Should I have done more? What can I do to make this easier on him? I have tried so so hard to make this transition as easy as possible for him, and for the focus to remain on him. I just wish that I could do more to help him through this. 

Tomorrow, we are going to do all that he wants. We will go and see the ducks. We will have ice cream, and bananas, and red apples! We will take him somewhere fun… and I can’t wait!

Welcome to the world Nora Beau; her first 5 days

Thursday 16th February 2017: Nora Beau’s Birthday

Nora’s due date, and Granny’s Birthday! This was the last chance for her to arrive, before having to face induction – which was booked for Friday 17th. I had been trying out all the old wives tales over the previous few days, to try and bring labour on naturally, as I didn’t fancy being induced – mostly because I didn’t want the possibility of being away from Stanley for quite some time.

On the morning of the 16th, I woke at 02:30 feeling some twinges, but expecting it to be nothing since I had been having these feelings on and off the last few days – so I went back to sleep. By 05:00, I was awake with what felt more like contractions, and by 06:00 I thought I had better start timing them to see what was going on! Contractions were every 5 minutes, so we got ready, and dropped Stanley off with his Granny. I gave the hospital a call, and given the diagnosis of Gestational Diabetes (GD), they said I should pop up. We arrived at the hospital at 08:30, with contractions still every 5 minutes.

I was put on the monitor to keep an eye on baby, and everything seemed to look fine. Around an hour later our midwife, Gemma, examined me so that we could see what was going on, and it turned out my cervix wasn’t open – I wasn’t even 1cm dilated! But, they wanted to keep me on the monitor a little while longer, since it looked like baby’s heartbeat was dropping with each contraction. 

At around 11:00 the consultant came, and she was happy with the recordings on the monitor – I had changed positions which seemed to be helping. The consultant suggested attempting to break my waters, but Gemma said this would be impossible since I wasn’t even 1cm dilated. So, they kept me on the monitor some more, and said that I could be taken off soon so that I could get moving around, to try and speed things up. At this point, they were contemplating sending me home. We discussed what would happen regarding GD, which meant the need to monitor my blood glucose levels every 2 hours when I went into labour, the possibility of needing a sliding scale (IV drip with insulin and glucose to help stabilise blood sugars), and the need to test baby once she arrived.

Turns out it was a rather hectic morning on the labour ward, so Gemma pretty much left us to it. She kept popping in to check the monitor, and offer some paracetamol. I seemed to be coping ok with the contractions at this point, and the midwife kept commenting on how cool and calm we both were (certainly didn’t feel this way on the inside!), and even joked that she could imagine walking in and a baby just “suddenly popping out”! By 11:15, I gave in to Gemma’s offers of paracetamol – as by this time, the contractions were starting to get a tad more painful! After giving me the paracetamol, she then went to find the consultant to see what the plan was… could I come off the monitor and start moving around, or could I go home?!

Little did I realise… just 10 minutes later, at 11:25, I officially went into labour… and as quick as 11:50, I suddenly felt the need to push! Hubby went to find Gemma, and she casually strolled in, taking her time… most definitely not expecting a baby to actually be entering the world! However, she soon realised that little one was most definitely on her way, so she grabbed a second midwife, and at 11:58 baby Nora entered the world! Good job I didn’t get sent home! From the minute we arrived on the ward, Gemma was fantastic – although she was clearly busy, she remained so calm throughout the morning, which clearly helped in how I felt, she made everything feel so comfortable and stress free!

In the end, there was no time to monitor blood sugar… no time for a sliding scale… no time for pretty much anything! It was so much quicker than I ever anticipated… and it happened naturally. It was calm, there was little intervention, and only two midwives in the room… it was everything I had hoped it would be – and so so different from my experience with Stanley (highlights of which include: induction by oxytocin, failed epidural, emergency alarm being pulled, room packed full of people, and a consultant firmly warning me: “if he doesn’t come with the next push I’m going to cut you“)!

So, since I was diagnosed with GD, this meant that Nora also had to be checked when she was born. She had to have her blood sugars monitored every 3 hours, and needed to pass 3 consecutive tests before she was allowed home. Her first test was at 15:00, which she passed. The following test was at 18:00… and unfortunately she failed this one (she didn’t feed well prior to this). This meant that the 3 of us had to stay in hospital for the night… whilst Stanley was with his Granny celebrating her birthday, and having a sleepover with his cousins! The whole time we were away, Stanley had no idea what had happened – everybody kept it a secret from him so that we could be the ones to tell him the news that he had a baby sister.

Nora’s following 3 blood tests were taken throughout the night, and thankfully she passed all 3. It was a little tough during this first night, since once she had been fed after her test, we weren’t allowed to feed her again for 3 hours – as she had to be tested again before her next feed. She was starting to get a little peckish after 2 hours… but, we got through it!

Day 2: Nora meets her big brother, Stanley

We spent most of the second day in hospital, waiting to be discharged (despite being told we were ready for discharge at 10:30!). In the morning, Nora had all of her checks done (paediatrician, hearing etc.), which were all fine. We were just so desperate to get home to see Stanley, and to introduce him to Nora!

We finally arrived home around 4pm. We got Nora settled in her Snuggle Nest, and daddy went to collect Stanley. We wanted to make sure that neither of us were holding Nora when Stanley met her for the first time, it was important to us that the attention was on Stanley being a big brother, and not on the arrival of Nora. When Stanley first walked in, he was a little grumpy (as he had just woken up!), and so he came straight to mummy for lots of cuddles “I just wanted you mummy“! He then gave Nora the taggy he bought her, we gave Stanley the presents from Nora… and things so far seem to be going well. Stanley calls her “my Nora” or “my baby”! He has said the sweetest of things, such as… “I think baby likes me“! 

One of the strangest feelings in seeing Stanley again after spending a couple of days with Nora, was the realisation of how grown up he seems. When he walked through the door, it felt as though he had instantly grown up… and put on some weight (he now seems so heavy to pick up!)

Day 3: Our first family dinner!

Our first full day at home as a family of four… and not the best of starts! I was feeding Nora in our bed at 05:00, when Stanley woke up. He came running through to our bedroom… looked at Nora… started crying, and ran out. Daddy went after him and Stanley said “there’s no room for me anywhere“! We soon showed him that there was plenty(!) of room for the four of us, and so he settled down, and came for snuggles in bed with Nora.

I remember when Stanley was born, we barely ate, went out, or did pretty much anything! Not only was it tough because it was our first, but he had his cleft too, which meant feeding him took so so long. We had constant appointments, or people visiting our house – we were lucky to have the most amazing support with Stanley, we just seemed to have so little time for anything else! Second time around, things are so far, much different – we have time! Nora is guzzling her milk down… faster than I don’t know what! Apparently this is pretty normal… it’s just that our “normal” is based on what we know from Stanley, in which case it could have taken an hour to give him a bottle. With Nora, you could blink and you could have missed it!

Our community midwife, Luretta, visited us for the first time this morning, and she couldn’t have been more lovely. She was really pleased with how Nora was doing, which was great. She also suggested coconut oil for Nora’s skin – she has some particularly dry hands and feet, and I think this has been the best thing we have bought! Going to try this for Stanley too, since he has always suffered from dry skin.

Given the freedom we seem to have… we actually managed to cook a (relatively!) decent family meal on our first day at home! The four of us sat at the dining table… couldn’t have been more perfect. I’m even enjoying the odd sneaky treat (including a Mary Berry brownie for pudding!), now that I don’t have to monitor my blood sugars anymore. Though, sticking to the GD diet will reduce my chances of getting Type 2 (which is now already increased because of having GD)… so, I hope I can continue this as much as possible.

Day 5: A lazy Sunday

We spent Sunday at home, firstly with a visit from Luretta in the morning. She weighed Nora, and her weight had gone down to 7lb 2oz – considering they can lose up to 10% of their birth weight, Luretta was really pleased with this, since Nora has hardly lost any of hers! She was very reassuring “keep doing what you’re doing“! The rest of the day consisted of chilling at home, with visits from both sets of Grandparents.

Day 5: Our first trip out

Today, Stanley said he would like to take Nora to the park… and so, that’s what we did. He also said “we can slide her down!” …but we decided against that one!! First thing we learnt by taking a trip to the park? Turns out, getting out the house now takes us a little while longer! The amount of trips we made back to the house because we forgot something… and then still ended up leaving the house forgetting something! Then, just as we think we can finally set off, we start driving… hubby looks in the mirror… and realises little Nora’s hat has fallen down and is covering her eyes! Eventually, after what felt like hours, we made it to the park. Stanley had so much fun, whilst Nora enjoyed a nice peaceful nap!

We came home, snuggled up on the sofa in front of the fire, watching Spiderman, and eating cake! Before I knew it, they were both fast asleep ‚̧ԳŹ I could have sat and watched them sleep all night… I don’t want days like this to end. On the other hand, I am so excited for all that lies ahead.

“…at least everything’s normal” – cleft vs. gestational diabetes

“Everything’s ok this time” … “oh I am so pleased for you that it’s all ok” *mention of Gestational Diabetes* “yeah…but you’ve not got the worry of that” … “at least everything’s normal”. It wasn’t just the¬†words that made me want to scream back at her, but it was that¬†look, that awful, patronising, look that someone gives you… when they have absolutely no idea. These comments refer to the fact that our little boy, Stanley, was born with a cleft, and that as far as we know from the scans, our second (who I am am currently pregnant with), doesn’t appear to have a cleft. This is my second pregnancy, and first time being diagnosed with Gestational Diabetes.

I think these comments stem from¬†a cross between the myth that a cleft lip and palate is “purely cosmetic”, and that gestational diabetes simply causes “bigger babies”. In my first pregnancy, we found out at the 20 week scan that Stanley had a cleft lip (at some point I will write a post on what we went through at diagnosis), and from that day forward, we have been on a rollercoaster of a journey. We were lucky to have amazing support from our cleft team (Trent Regional Cleft Network), and in particular our Specialist Cleft Nurse, Caroline (a wonder woman!). We also have the invaluable support of Big Smiles, a local support group where Stanley has the opportunity to get to know other children that are on¬†the same journey.

During pregnancy with Stanley, all we could do was prepare ourselves. Prepare for what his cleft would look like, prepare to find out the extent of his cleft lip and palate (though we had a pretty good idea from the scans we were provided). We prepared for the many possible outcomes, including problems with feeding, surgery, and all that the future may hold.

There was nothing that I could do that would change the fact that Stanley would be born with a cleft. Nothing I could do to change that fact that he may have associated hearing or speech and language difficulties. Nothing I could do that would change his future cleft journey. All we could do was equip ourselves with the knowledge of the many different outcomes that we could be faced with. Regardless of what I did during pregnancy, the same outcome would remain.

For¬†Stanley, his cleft journey will continue, perhaps well into his adulthood, as he will continue to remain under the care of the cleft team, and have regular clinics to attend. He was born with a cleft of the lip, alveolus (gum), a split (bifid) uvula (dangly bit at the back of your throat), as well as a submucous cleft palate. His uvula and palate cause him no problems, but his cleft alveolus¬†(also known as a “gum notch”, literally a gap in his gum), has meant that he will remain under the care of an Orthodontist. He has a tooth that has come through in his gap, but this has come through sideways, and when he is a little older (approx. 7-9 years), he will have more surgery ¬†– an Alveolar Bone Graft, that will hopefully enable his adult teeth to come through properly.

So, to most people that see Stanley, they see that his cleft lip has been “fixed”, and automatically assume that everything is now ok. They either aren’t aware, or tend to forget, about things such as his speech and language therapy, or the future surgery he will have to undergo. They forget about the lifelong journey that he is on.

One thing that I remember Caroline (our cleft nurse) clearly telling us, was to take pictures.¬†Take plenty of pictures (because some people don’t). So above is a selection of the many many pictures that we took before his first surgery, and before he got his second smile. I am so glad that we have so many pictures of his first smile, a smile that we will always cherish, and that I hope he will proud of when he grows up.¬†The photos below are from his surgery at three months old, and of the moments that he came back from theatre. This was by far the toughest time that we have been through as a family.

But, this post isn’t aimed at Stanley’s cleft journey (I’ll have many more to come that focus on this!), rather the struggles that you face during pregnancy. The reality is that most people expect everything to be “normal” (there is no such thing), for everything to be ok when you go for a scan, for there to be no complications. People expect to find out if they are having a boy or a girl at their 20 week scan, they rarely prepare for the prospect that this may become secondary to something a little more serious.

Fast forward¬†a couple of years and we have a little lady on the way. This time, I was more than prepared for a cleft diagnosis (and although her lip doesn’t appear to be effected, the prospect of a cleft palate remains in the back of my mind for her arrival). I was even prepared for something else to crop up at the 20 week scan. But, I hadn’t been prepared for a diagnosis of Gestational Diabetes¬†(GD) at just 13 weeks (I am now 36+4, and so ready for her to arrive!)

When I’ve mentioned GD to others, I couldn’t tell you the amount of times I’ve received a comment about having a big baby (and often accompanied with a little chuckle). Most of time I shrug it off, and inform them that actually, this is just one of the many myths of¬†GD, but sometimes I just don’t have the energy to explain it yet again. People have also assumed that I have a poor diet – “eating too many cakes”, or they have made comments about my size – “I thought you get diabetes when you’re overweight” or, “I thought only big people get diabetes”. Similar to how¬†people assumed with Stanley’s cleft that it was “just” cosmetic, I have found that people tend to assume that GD “just” causes bigger babies.

In comparison to my first pregnancy with Stanley, I think the pregnancy in itself has been a whole lot more worrying. There isn’t a day that goes by that I haven’t got GD on my mind, there is no shutting it off or blocking it out. The difference is, there¬†can’t be a moment that I let it slip my mind, because of the potential consequences. With GD (unlike having a cleft), there is something that I can be doing every single day that will hopefully help this little lady that’s growing inside me. I monitor my bloods at least four times per day, I take metformin, and I follow the¬†8 golden rules to eating¬†(low carb, low sugar, plenty of water, “pairing” foods etc.). I have the support of two wonderful Specialist Diabetes Nurses (Sarah and Janet), who are just a phone call away, I attend regular clinics and scans to monitor the fluid around baby and to monitor her growth. Because, GD isn’t just about big babies!

There are so many scary complications to GD, that every day I remind myself that the more I try to control and manage it, the more I am lowering our chances of experiencing any of these. Baby and I will now always have a higher risk of developing Type 2 Diabetes. Up to 50% of woman diagnosed with GD develop Type 2 within 5 years of the birth (NICE). That’s a scary statistic! As a side note, if you have been diagnosed with GD then I would highly recommend the Gestational Diabetes UK Mums¬†Facebook Group, you can learn so so much from the admins of this group, and receive so much support from others that are going through the same. They also have an incredible website, where you can become a member¬†(so worth it,¬†even just for the GD friendly brownies – they have saved me!)

So, whilst some may see GD as the “better” alternative to having a baby with a cleft, perhaps because of the outward facing nature of having a cleft lip and the superficial society that we unfortunately live in, I beg to differ. There really is no comparison between a diagnosis of a cleft, or GD. Each have been equally tough in there own rights. GD, I hope, will mostly stay refined to pregnancy and birth, whereas the consequences of having a cleft will be with us for a little longer.

Either way, I would not change anything for a single second. We fell in love with Stanley’s first smile, and fell in love all over again when we saw his second. Similarly, reaching the end of this pregnancy, and little lady arriving into the world as safely as possible and being ok, will be a huge relief. I hope that through both of these journeys we can help our little ones grow into confident, and compassionate, people.

And, if we are lucky enough to have baby number 3 one day… I will be prepared for just about anything, and know that whatever happens, there is always someone out there that cares, and is willing to offer support. No matter what you are faced with, you will no doubt come across that one person who¬†makes one of¬†those comments. The ones that hit you hard. But, always keep in mind that this may not be out of malice, but rather them being unaware. The more we can educate, inform and raise awareness (of things such as cleft or GD), the less likely others are to be at the receiving end of those difficult comments.

What happened when Nana chose to walk in front

Yesterday, Stanley had a meltdown. Nana walked¬†in front of Stanley, rather than behind (or to the side!). This may seem trivial, but when he’s tired, little things like this become amplified, and his routine becomes even more important. Safe to say that shortly after, he fell asleep in my arms (a rare and treasured occurrence now he’s growing up!), and had a much needed 2-hour nap!