I LOVED being pregnant. Aside from a few weeks in the beginning where I felt nauseous all day long and then about a week where if anything came near my mouth I would spew, I could handle oxygen and that was about it! That week was pretty rough but from about 14-16 weeks I felt that “glow” that everyone talks about. My hair went super curly, thick and glossy and I was loving it, my bump was really starting to ‘pop’. You know what was one of my top favourite things about being pregnant? Not having to worry if you look big or if your tummy was sticking out. No more standing in front of the mirror sucking your tummy in and standing up straight, sticking on a pair of heels to make your butt stick out more to give your tummy a flatter illusion – no, you stand in front of the mirror in your oh-so-comfortable maternity leggings and pretty top slip your swollen feet into some pumps and off you go – proud of your tummy sticking out. Be proud pregnant Mamas, even if you don’t feel like your amazing and glowing – I’m telling you that you are! It’s a beautiful and amazing privilege to carry and grow a child from within!
In my 2nd trimester I felt healthier than I had ever been. And I started feeling little flutters and kicks which got stronger and stronger, those legs hardly ever stopped moving and even to this day don’t stay still for a minute!
We decided to keep the gender of the baby a surprise. I always thought after the long hard slog of labour (it’s called labour for a reason people!) that surprise at the end makes it all the more worth it, extra oomph to push for!
Everything was going and growing good and well. Then came the last few weeks of the 3rd trimester. My. Days. Time couldn’t have gone slower.
I was around 33 weeks and I had a scan and check up and the consultant found my blood pressure was high. This guy was so quiet it was like trying to get blood out of a stone to find out what that meant. He just said I had to go to the hospital – anxiety levels instantly rise. Why? What’s going to happen? “They will do some tests and they might bring the baby if they show signs of danger to you and baby” Yes, that’s seriously all he said.
I go home and phone my husband and as soon as I hear his voice I start crying! The hormones! He meets me at the hospital. They check my blood pressure again and it’s absolutely fine. Take a urine sample, check it, it’s fine. Free to go! Well, from then on my blood pressure was up and down, up and down. I was back and forth to the hospital, my pee was always fine and so I was always sent home with puzzling looks as no one knew why my blood pressure was all over the place. I was put onto bed/sofa rest and told to wait for the baby to come, I spent my days watching Netflix and painting. A week before due date and the contractions started – wahay! Maybe she would come early. Nope. She didn’t, the contractions came and went for 3 weeks! That brings us to Friday 9th of June 2017, my sister and her husband had just got back from missionary work in Africa and we were having lunch and here came the contractions again. “Oh these will go, they always do” I was still saying that at 7.30pm, I went to bed coz if it was the real deal I needed some sleep first right? Morning came and they were still coming. This was it, 10 majorly uncomfortable days late but baby was finally on her way!
She was born 10th of June 2017 – our beautiful Zoey-Jane Rose. (I’ll save my birth story for another time) but she was here, the happiest and most surreal moment of my life!
She was a little chubster weighing 8lb 2oz. I couldn’t believe she had fat rolls already, I couldn’t stop staring at her little “croissant arms” as a friend later called them. Her first breastfeed seemed to go well, a nurse helped me latch her on, I remember feeling like I had no clue what I was doing, I just let Zoey-Jane do her thing and sat completely still until someone came back to help. I got my husband to take a photo to send to my mum, I was from her that I knew so much about the wonders of breastfeeding (she fed both me and my sister for 3 years) The photo is awful, I look horrendous (yes I know I had just gone through labour) but my husband is the world’s worst photographer! Seriously! He could have got a better angle or something but no, at least we have a photo of our first feed, a beautiful memory to keep forever (and not let anyone except my mum see).
Well feeding went downhill from there. I always knew I wanted to breastfeed, I was already passionate about it, but no one told me just how hard it can be and the problems that can arise. I’ll go into more detail about our feeding struggles later but after 2 horrible days in hospital we came home. It felt good to be home, we were much more comfortable.
Zoey-Jane was very unsettled and incredibly fussy with her feeding. She was checked by many different nurses, midwives, health visitors and feeding specialists and no one knew what was wrong or how to help so we just struggled on ourselves, through many, many tears. I knew something wasn’t right, I was convinced she must be tongue tied and insisted we have an appointment with the tongue tie team at Aberdeen hospital. While we were waiting for that Zoey-Jane had her 6 week check at the GP. I can’t even remember all the things that he checked at this appointment, there is just one very specific memory I have of this time – when it came to measure her head. It measured big, and he seemed concerned. He felt all over her head and said her soft spots had closed over early and she had a ridge at the back of her head, “it was called something but he couldn’t remember” (We had already felt the ridge and I was going to mention it) What did all of this mean!? I asked why it was concerning that her head was measuring large to which he told me “it can be a sign of pressure on the brain” what a thing to tell a first time mum with a brand new baby already feeling like she knows nothing, without any explanation or words of comfort. “and what signs should I be looking out for that would indicate she has pressure?” I asked, “just general signs of being unwell” Great. So helpful. He was happy to send us home with another appointment in 6 weeks to keep an eye on her.
We were struggling so much with our feeding issues I decided to worry about one thing at a time! Get the tongue tie sorted and then worry about her head if it was still an issue in 6 weeks. DO NOT GOOGLE IT. I told myself.
A week later we were away in Glasgow at a convention with family, Zoey-Jane was 7 weeks old by this point and while we were there she seemed more sleepy than usual and was being sick pretty badly. If it wasn’t for what the doctor said I would have out it down to normal baby behaviour, but I was worried, so was my mum as she had googled it and had come across the dreadful reality that we were hit with at the hospital. They did all the usual observations and listened to what I had to say about her head measuring large, no soft spots and the ridge at the back of her head. We were told that she seemed absolutely fine and well in herself and it was just usual baby behaviour which was great. However, that was the first time we ever heard the word – Craniosynostosis.
I felt sick. My heart had this heavy feeling. That sounds serious! Craniosynostosis is a condition where one or more of the sutures in a baby’s skull fuses too early before the brain has fully formed. Usually these sutures are open and the skull is flexible for the baby to fit through the birth canal and they stay open for around 2 years and close over into solid bone. We’re trying to take all of this in without letting my thoughts run wild, I was trying so hard to listen carefully and calmly.
Sagittal Craniosynostosis is where the sagittal suture fuses along the top of the skull, the baby’s head grows long and narrow and can display a ridge where the suture has closed over. Just like Zoey-Jane.
When the sutures close to early the brain pushes against the skull as it continues to grow giving it a misshapen look. It can cause increased pressure on the brain, which can lead to vision problems and learning difficulties (and worse but they didn’t tell us that then. Google did later)
They assured us that Zoey-Jane had non of these symptoms so far and that we shouldn’t worry too much for now, we would have an appointment with the neurosurgical team and for the time being to just keep enjoying the new baby snuggles.
That was the start of our journey with Craniosynostosis.
If you are a cranio-mum and have found my page – welcome! Maybe you’re at the start of your journey, or maybe you’re right in the middle what feels like s nightmare you with someone would wake you up from, or maybe you’ve come through it to the other side like we have. At whatever point you are and you’re just looking for a bit of support or solidarity then this is the page for you! Please reach out – I’d love to chat.
Or maybe you’re not a cranio-mum and have found my page, welcome to you too! I’ll not only be raising awareness of Craniosynostosis but talking all things mum and baby, from breastfeeding to normal baby sleep, from baby-wearing to weaning, from baby poops to baby development, a mother’s mental health and self care to relationships with friends, other mum’s and family. There’s a little something for everyone I hope!
To all mums, I welcome you! But I feel I should set a trigger warning to say that our journey has been beautiful yet heart wrenchingly painful. I personally hate it when I come across painful stories or photos of babies and children. It really upsets me and I struggle to get those images and thoughts out if my head. So I only think it’s fair to let you all know if you’re the sensitive type like me sometimes you may want to scroll on through particular posts of mine. If I’m going into specific upsetting details I will always let you know before I proceed so you don’t stumble across something you didn’t want to hear or see.
Cutting a very long story short we struggled through the first 6 months of life with many appointments back and forth to Glasgow children’s hospital. At the very first appointment with the team we found out she definitely needed surgery. Major surgery at that. The stress of that and also having a very very unsettled and fussy baby was unbearable at times! But we made it through with a strong faith in God and invaluable support from our family.
We found that Zoey-Jane was not tongue tied after all and no one knew what was wrong apart from her rare condition called Craniosynostosis. We put all her fussiness down to that and were told that often parents see a big difference in their babies after surgery, once pressure is released, which was in fact the case with Zoey-Jane as her case was very severe.
She underwent major surgery at 6.5 months old and it was the worst, hardest, most heart crushing, gut wrenching experience of our life. I’ll go into this further in another post for those who want to know more.
Zoey-Jane was incredible, there are no words to describe how amazing these little cranio warriors are! They bounce back quicker than what you can believe until you see it with your own eyes. Every week we saw a huge improvement, she came on in leaps and bounds. She is our little star! I’m super proud to be her mum, she is my strength and light and forever my inspiration. The strongest little girl I know.
We fought our battle with breastfeeding issues and Craniosynostosis and we made it through solely on determination powered by the greatest love of all – a mother’s love! Fast forward to today, I’m lying here with her while she naps with her beloved boob – yes we are still going strong with her breastfeeding journey! Writing this for all you mum’s out there looking for solidarity and support through your own breastfeeding and/or Craniosynostosis journey. And I’m here to offer you support and advice, to make sure you know you’re all doing amazing, sometimes people around us forget to tell us that, well I’m here to tell you that! You’re an amazing mummy and ALL that your baby needs!
And my motto and meaning behind the name of this page – Trust Your Bs is always : trust your baby, trust your body and trust your boobs! Its the first piece of advice I give any knew mum, and as long as you have that trust as your base you can usually never go wrong. I’ll go into this further, again in another post. But for now Mamas, I am so happy you’re here and you’ve found my little piece of the mothering world – I really look forward to sharing our journeys together, supporting and inspiring each other!
Please say hello either here or on my Instagram page @trustyourBs
I would love to hear from you!
Cranio Shaped Mama 