Ok update, not about photography at all really, well a little. Obviously this is linked too my last post Creation after Loss please give that a read, there's a lot of my photography work in it! unlike this one...
I’m dealing with a bit of creative block, it’s been a while since I’ve had the burst of energy. You know the creative energy that you can feel bubbling and the urge to just do something, any thing. I really want that energy… it will come back soon I’m sure, I’ll just have to wait. I’ve put it down to being tired and stressed out. However I have good reason to be tired and stress out, baby Cole has Gastroschisis.
Gastroschisis, so this is a birth ‘defect’ I knew nothing about a few weeks ago… ironically it was #GastroschisisAwarenessDay on the 30th of July. The day when it become confirmed that our baby had this condition. Now I’m clued up on it, well as much as you can be in a short amount of time. It’s funny in a way you think these things just won’t happen, then they do and they just keep coming, and you just have to get on with them. At this stage in my life I need to stop being surprised when things don’t go right…I’m getting my head around it, I’m exhausted by it but staying as positive as possible. I wish I had the luxury of crumbling for a few days, weeks, or how ever long it takes but I don’t have time for that. Also I’m trying to be more ‘positive’ because positive things happen to positive people right? (I also think the universe needs to stop being a dick and give me a break but that’s not a very positive outlook is it…I'm grateful for what i've got)
I’ve been googling again, yeah I know but I’ve been on proper sites this time! No more random articles… So here is the score, I will give birth in an induced labour, once my baby has arrived they will wrap them up in what looks very much like cling film then I will more than likely get skin to skin. I’m not sure how long for and it will never feel like long enough, then my baby will be put into an incubator and they will have an operation, however the operation can’t always be done at first sometimes they need wait a little while meaning that I might not get to pick him or her up straight away probably for a few days maybe even weeks. I really don’t like the idea of that! Deryn was constantly on me cuddling and feeding and it’s the best feeling ever. I want that again. I will need to learn to be more patient.
Also my PAPP-A is low, so this puts me at risk of pre-eclampsia and baby Coles growth becomes more of a concern. But I’m being monitored anyway for my 'high risk pregnancy' so I’m hoping we can keep track of all this. Another worry I didn’t need but it is what it is. Gastroschisis makes a premature birth 30% more likely and a low PAPP-A also increase the chance of having an early birth, so I’m cancelling all my plans from November onwards! A Low PAPP-A also puts me in a risk category of ‘miscarriage in the second half of pregnancy’ which is really something I didn’t want to think about, but now the possibility of miscarriage is back in my mind. It’s frustrating as I eat healthy(ish), I drink water, take vitamins I don’t smoke or do anything I shouldn’t and my body still lets me down when I need it to just do what it's meant to do. But i’m determined to stay on top of this and do what ever I need to ensure that my baby stays safe!
I will also need to pump milk straight away, until I can feed my baby myself. It’s more then likely they will be fed by a tube at first. I don’t want to brag (or do I…) but I’m really good at pumping milk anyway.
None of our family or friends will be able to meet our baby until we are home, which is upsetting because ideally my sisters would have met the baby within the first day but the hospital stay varies anything from 2 weeks to 2 months (or longer if there are complications) however I’m praying for no longer than 2 weeks! Sometimes if everything goes to plan it can be straight forward and life will become “normal” fairly quick. I can’t wait to see Deryn as a big sister, she’s such an amazing kid she wakes up and kisses my stomach and says good morning to the baby already. It’s very cute and gives me the motivation I need, however she also laughs when I throw up! She’s very caring but also has a slightly twisted sense of humour, really not sure where she gets it from! I was hoping that Deryn would I get to meet her new sibling as soon as possible but that’s looking less likely now. I’m also nervous about being away from Deryn for a long time, one of the reasons I wanted a home birth. I just want both my babies under the same roof with me. I don’t want to be apart from either of them or Tom. I had a phone call with the mention of accommodation, it was mention to make me aware as they need to free up maternity beds quickly once i'm healed which I completely understand. We are looking at Cardiff or Bristol at the moment, but this hasn’t been confirmed yet I’m guessing it depends on how serious the conditions is towards the end of my pregnancy, how much space there is and which hospital is best equipped to deal with us, I’m hoping for Cardiff as it’s a quicker trip!
Survival rate is good 90% apparently, there are of course things that could go wrong. But there are things that could go wrong in every pregnancy! My baby is a little warrior I can just tell, I’ve started to feel little movements. It’s too early for kicks yet but there’s definitely some little shapes being thrown (another baby Cole who gets their dance moves from their dad). I’m preparing myself for a different kind of birth than I originally planned yes however I just want my baby to be ok so not getting what I wanted isn’t that important to me anymore. I’ve kind of given up on plans anyway! Yes I had my heart set on a chilled out home birth and getting to cuddle my baby as much as I wanted but a safe delivery is more important.
There’s A LOT of information online some is helpful and some is just absolutely NOT. The midwifes and consultants have been great, they are helpful in answering all of our questions of course at this stage it’s hard to give us any indication of how it’s going to go. I will need scans every month and constantly need to be monitored.
Pregnancy is an amazing miracle, against all the odds a human body can make and keep a baby. It’s insane and scary… and of course painful, but I’m still hoping for a natural birth at this moment in time we haven’t ruled that out. Of course that depends of many factors, a natural birth with Gastroschisis can be done. I want to feel my contractions and I want the process but if I need a caesarean then that’s what i'll do, I know loads of brave women who have had caesareans and I really respect them because operations scare me and the recovery time puts me off, but i'll do it!
As Gastroschisis goes I hope it’s as straight forward as possible. I just wanted this to be a ‘normal’ pregnancy I kind of needed it, I’m sick of things going wrong however by this point I should of expected it really! However il just get on with it and all the extra scans will be nice, seeing baby Cole every 3-4 weeks will be great. I’m looking forward to seeing my baby grow and develop, I will need to give my self a talking to before every scan and remind myself not to freak out when I look at the screen, the last one we went too the ‘defect’ was quite obvious unlike the other scans before it but it’s all fixable and the baby is still perfect to me of course I would prefer them to of developed without complication but they are who they are… my concern is going into labour early as I’ve already mentioned I’m at a higher risk of that happening, so I need to stay relaxed. There’s also risks that the baby could become ill while i'm still pregnant, which again is worrying. It’s hard to tell at the moment in time how much of their bowel is floating around (floating around... it is! I saw it, it’s just kinda there moving like an extra few umbilical cords or leg, it’s a bit weird). There’s risk of other organs also being outside, there’s an opening in my baby stomach where there shouldn’t be, that’s a lot for me to get my head around. But I’ve been assured they are in no pain, and they are obviously not aware they have a ‘defect’ a concern is that they might move too much and twist their bowel. Sometimes this can even corse a ruptured which made my heart stop when I heard about that possibility. It’s a lot, but again I’m being positive, in a few years time this will all be a distant memory. I will get my baby soon and it will all be worth it. (No more pregnancy's after this, yep I’ve said it before but I really can’t do anymore, mentally or physically)
As I’ve mentioned in having a bit of a creative block… I need to do more portraits for this pregnancy, something to look back on, I’m not sure what I have some ideas but it’s getting myself motivate to do them thats hard. I owe it to myself also I deserve a bit of creativeness and fun, also my baby deserve it’s they are already very special and before I know it they will be here so having an image to look back on will be nice! That’s probably a task for the next few weeks, I want to plan it and do it right also I don’t want to force it, forced creativeness is never as fun. So hopefully my next blog entry will have some work and i'll go into the technical stuff too! Because I like the technical stuff! And it’s been a while since I’ve done a blog on the technical stuff!
I'm incredibly lucky to have Tom, he's been great as always. My sisters and good friends are a great support system. I’m also lucky I have people who care about me, (people who don’t need to care as much) which is actually nice and I’m not easy I don’t text back, I change subjects, “I’m fine” is always easier to say… I also have people who clearly couldn’t care less about me or the baby (the people who should care) but again I must stop being surprised. The last year has been eye opening in many ways for sure.
This will be a running theme for the next few months, maybe even longer! My art is about connection and awareness so blogging about this journey only seems right. People ask why i'm so honest, but I just write what I feel, and I hope it helps someone. I’m looking forward to some creative motivation! It will help me with staying positive!
Thanks for reading!
Helpful link for PAPP-A information click here
Helpful link for Gastroschisis information click here
Helpful link for miscarriage information click here
... It's good to know baby Cole isn't camera shy!
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