Updated: Nov 26, 2021
No new art, just an Gastroschisis update this is a follow on blog from Creation is hard work. At some point I'll categorise my blog and have them all in sections on different pages, for now my blog is as scattered as my mind... I've already shared a blog this week Sleep talking... and I try not to do more than one a month, but as I like to share awareness and for some reason I keep getting challenges thrown at me I'll share todays events... This will be full of typos of course!
This blog is a little all over the place I writ it as I was waiting for my appointments. I have no idea what to expect, I wish I did. I'm sharing this because maybe it's helpful for someone going through the same, this is a real life play by play of my experience so far with being pregnant while my baby has Gastroschisis. Every pregnancy is different, but while waiting I have a lot of time to think, process and I want to share this with others because before this pregnancy I was not aware with how exhausting these types of conditions were and all the added challenges that came with them. Gastroschisis is a condition that means my daughter has part of her intestine on the outside, she will need an operation and extra care.
Today is a nervy day two appointments, but first a scan which will be very intense as scans here tend to be. Then we will have our usually chat after that, to find out how everything is going. I’ll get a check over, answer a load of questions about my “feelings” depending on how exhausted I’m feeling at that point maybe I’ll be “fine” just so I can go get some fresh air…then we will need to go away for a few hours and come back for our second appointment of the day. That one is in the children’s hospital I think, I’ve forgotten already. I’m most nervous about walking through the children's hospital (if that’s where it is), sick children and babies make me want to cry. Even when I was going through my not feeling my emotions stage in my life, (god I miss that unhealthy stage) and even before I was a mum the idea of children going through illness was hard. The thought of that is enough to give anyone a lump in their throat! The strength that people have is admirable. Strength I will somehow have to find, somehow.
As I wait I have my headphones on of course, but on low. I can hear everything I just don’t want to invite anyone to have a conversation with me. Not today. However that doesn’t seam too likely to happen, the corridor is full, I usually get a seat today that’s not an option right now so standing it is. There’s a woman across from me, a few feet away I’m picking up on her nervousness. I accidentally had eye contact with her, her eyes are FULL of worry I sympathise, we are not aloud our partners with us however hers is here. Like me he’s standing, I can’t help but feel more sorry for him as he looks lost, they keep glancing at each other. My appointment is running late, obviously. When I got here there was already 8 people waiting with 6 chairs. I’m making 9 now, today will be a long day. It’s hot, I’m making an attempt to wear a mask and I want to rip it off and be sick. From the heat, my nerves or genuine pregnancy sickness I don’t know.
I notice a woman fanning herself with her pregnancy notes, she is also standing I wish she had a seat. No one is talking to each other, I sometimes catch parts of conversations. The conversations in this corridor are never easy to listen too, because everyone here has a baby with some kind of condition and some of them might not make it for long after birth. Some of them have already lost babies and are pregnant again.
The woman who was suffering from standing with the heat leaves, she needs fresh air. A few minutes later a seat becomes free, so it’s mine now I feel bad but my back also hurts so I take it. It’s a university hospital so there are student doctors and nurses walking around, which is nice and positive to see, they look bright and enthusiastic. They will save lives and make a difference, that must be a great feeling to have. I decided to write today to keep my mind busy, so it just looks like I am furiously txting… everyone is on their phones, heads down, alone. Our partners have to wait outside. People are getting their appointments quicker now, if the woman who had to get some fresh air comes back she will get a chair if she is quick!
My appointment is now an hour late. The corridor is full again, chairs are also full. Someone else has their partner with them, a different couple from before I didn’t notice the first worried couple going into their appointment. The woman who needed fresh air comes back. She's standing again, I offer her my chair she politely declines. I can’t help but feel the man taking up a chair should move for her, yeah ok it’s 2021 we are all equals (when men let us be anyway...) but he could and should move for her as he’s not even meant to be waiting here, he hears me offer my chair too because I had eye contact with him after I asked her if she wanted mine. Now I realise I’m getting fed up with waiting and I shouldn’t be grumpy, but she eventually gets a chair next to me, my first thought is I hope she doesn’t talk to me.
A midwife tells the man he can’t wait here anymore and to go outside, I feel bad for him a bit it’s cold out however in this case rules are not meant to be broken. Guess I’m still feeling grumpy, I wish I had some water. I regret my decision to have a coffee and not pick up a bottle of water, I’m still sat in silence. Everyone is still silently sitting in their own worlds of worry. My heart burn has now also kicked in, great. I want my husband to be here with me. I could easily have my MacBook with me and be doing work now I have a seat… again I accidentally make eye contact with another pregnant woman. She has water, she’s also been crying, she’s alone and looks quite young. She goes back into the toilet probably to cry some more. Everyone here has a story, and is going through their own pregnancy experiences. All difficult, not everyone here will get to hold their babies straight away, some might not get to hold them at all. My stomach feels odd, I’m picking up on all sorts of vibes now. Almost two hours late for my appointment, I turn my headphones up a little, I can still hear but I’m fed up now. Tired, I don’t feel like talking or getting touched. I hope they are gentle with the scan. I hear my name…it’s go time!
The scan was much quicker today, my husband is aloud into the scans I’m always grateful when he’s aloud back in. I still feel sick from being touched but that parts done! Back into the corridor to wait AGAIN I also have a chair which is a bonus, I’m feeling drained now.
My daughter isn’t in school today she’s a little poorly, there’s time for a quick FaceTime. She’s emotional and can’t get Alexa to play the book she wants. I get that sorted, it was nice to see her little face, even though she looks a little sad if I could scoop her up through the phone and cuddle her I would. It's hard to be away from her, how will I managed being away from here for long periods of time once i've given birth. This is so far away from the home birth I had planned. I feel like i've now gone pale. I then accidentally go into conversation with people, dam it! Now they know my headphones aren’t playing that loud, I get asked how long appointments usually run late by, so I’m honest. Two hours is normal here, but everyone has seats now. Today I’m VERY grateful for WiFi in this corridor. All hail WIFI! I’m even more tired now. I want the next appointment to hurry up so I can have fresh air and water before my next one.
We get scan pictures every few weeks now, every time I look at the scan my daughter’s condition becomes more apparent. Although she’s doing well, she moves loads, she has her condition and I have mine. My low papp-A makes me tired, my body doesn’t feel cut out for this, and god I need a cuppa now! But obviously if I get up to go get myself something my name will get called… because that’s the way life is, so I wait, in the corridor of worry surrounded by silence and heat for my 11am appointment at 1.30pm.
Conversations have picked up now, I’m trying not to overhear, people are stressed and everyone needs their space. I can now hear crying, there’s a woman talking to her husband waiting. She is upset and there’s a midwife with her too. She’s not taking something well, but she shouldn’t have too, whatever is wrong with her baby must be exhausting for her. She also has a few folders, I’m guessing everyone in this corridor has a few folders. I don’t get why there isn’t a room, why have we got to be sat here waiting, why haven’t we got more space, more privacy, why should she have to cry in a corridor… however at least everyone has a chair now, was it like this before Covid? This is a experience I never used to give any thoughts too. It’s now almost 2pm, after this my next appointment is at 4pm. I was hoping to go get some lunch in between, maybe even do some Christmas shopping. That’s looking less likely and I’m exhausted. Why I’m I so tired, I’m literally just sitting in silence in a corridor.
It’s just me and one other woman now, everyone else has been seen. More might join soon perhaps. Have they forgot about me? I see two midwifes walking passed one has a load of urine samples in bags, imagine dropping them! That would take the piss right. Now I’ve realised how bored I am! I'll stop writing for a bit and doom scroll the internet… 2pm and I’m called for my blood pressure and bloods lucky me!
First appointment done, she’s a little small but doing well! And now at 2.20pm I get a cuppa… before the the next! There’s no time to go to McDonald’s or Christmas shopping now today, so we are sat in the hospital cafe, it’s busy! It reminds me of an airport there’s shops all around, it’s good to know because I’ll more or less be living in a hospital for a few weeks come January/February. Everyone here looks like they are on a mission.
Now it’s time to wait for appointment number two of the day. In Noah’s Ark, which is the children’s hospital, it’s colourful and bright. Full of cartoon characters painted on it’s massive windows. I can feel my heart getting a little faster but I’m too tired to panic. At the moment, I’m sure that will come... give it time. I hope know one uses big words today, I don’t think I can take much in at this point. I’m grateful to have my husband with me. It’s almost 4pm now, I could quite easily find myself a corner to hide and sleep in. I don’t want to talk to anyone, I’ve also got a stitch in my side and I WANT TO GO HOME!
4pm has now been and gone it’s closer to 5pm, still waiting but at least no one is crying, and I’m not in a corridor, I’m in a proper waiting area, with nice chairs. The room is becoming quieter, which for some reason is making me nervous. Also I’m not wearing my headphones so I have to deal with the ongoing monologue in my head that doesn’t shut up… my name is called, and we’re up again.
And it's done! However that appointment was like being kicked in the chest, honestly is good, I like it give it to me straight I can take it. But fuck, I mean why can’t life be normal. For once, I just want a normal life. I just want to have my family all close by, work and have some fun when I can without the constant kicking that is my life. People get that, why can’t I, but I’m also trying to stay more positive. However I don't know how I got through that without a breakdown I felt like a rabbit in headlights, now I'm too numb to cry the time feels like it's past for that. I get it they have to give you every outcome, the good, bad and the heartbreakingly ugly. Some of the outcomes I can't think about, they are too painful to even imagine. They have confirmed I will get no skin too skin. She will be taken straight from me, this is new conflicting information but I get it. They also know best, I need to trust them completely and go with it. I really was given every possible outcome, medical words mean nothing to me and they are very good at dumbing it down to make it more understandable but that still doesn’t make it easier to hear. She will be in ICU and tube fed, I’ll pump milk for her. I so badly want to breastfeed her, it’s such an important moment in building the bond for me. Of course if I can’t then I’ll make other arrangements. I’ll be able to sit by her but not touch her. I just want to hold my baby, to be with her and the rest of my family at the same time which will not be an option straight away. They can’t give me a timeframe, I’ve been told to be prepared for a long stay, best case scenario a few weeks in hospital operation within a few days or weeks. Worse case some babies who have had this condition with complications have spent their first birthdays in hospital. I’ll cross that bridge if and when we come to it, it’s unlikely that will happen and she’s doing so well at the moment! She’s a fighter, she’s amazing just like her sister and we can’t wait to give her a great life and all the opportunities she deserves, but for now I just need to keep going. As tired as I’m am with half shut eyes il keep looking forward.
Scans are still every 3 weeks and check ups will soon up their game also, however it’s already been confirmed I will be induced at 37 weeks earlier if needed. These appointments are exhausting they just keep getting longer, with more information to take in, I’m so tired but I know they are necessary... It's been a long day tomorrow I'll make art and take deep breaths!
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