Positive vibes, corridors, gastroschisis and art!
Updated: Dec 18, 2021
Another Bay Cole update! Gastroschisis is a condition that means my daughter has part of her intestine on the outside whiles she’s still in the womb, we are now 33 weeks and 2 days pregnant! We are getting very close…You can read my last post 'What to expect, when expecting the unexpected' here. Which is mostly just about a corridor and me feeling overwhelmed. This is a follow on from that post, I didn’t know anything about Gastroschisis before I found out that my daughter had the condition, so I’m sharing our story!
Today I have another scan and consultation. I have heartburn already, I’m back in the corridor of doom, sitting waiting. Today should be a quicker day, I arrived on time, of course. And they were on time also, which is unusual! So my blood pressure and all the checks I need before my scan etc. have been done already! WOW…now I’m sitting in the usual spot, headphones on, phone in hand. Today I was smart, I have water with me. It’s a little quieter here there are empty chairs, and no one is crying.
As today is a quicker appointment with less specialist I’m not going to write a play by play of every event, however I still need to stay busy, because that’s just how my head works. So my plan, is to write down the important updates, my feelings, and read over my phone notes or as some people would call it “my diary” because sitting in a corridor on my own filled with anxiety is the perfect place to process my emotions and thoughts from the last few weeks right?
There have been days since my last big appointment were getting out of bed has been hard work, I’m exhausted and I got a little overwhelmed a few times I guess, and perhaps I’m now in the habit of overreacting. Growing a person is hard! The normal every day tasks are also hard! I enjoy my job and I like working, I’m grateful for this because if I didn’t I honestly don’t think I would be able to drag myself around as I’m doing now. It’s still hard though, even with a job you enjoy when your feeling down and tired everything is heavy, simple tasks feel like more pressure than usual. Of course they still get done, like everything in life you just have to carry on. I’m also starving, all the time! But everything gives me heartburn and seems like effort, but my baby needs as much nutrients as possible. I can’t wait to not have heartburn!
As I sit here waiting my music is loud, I know other people can hear it, so nothing to heavy and controversial. At the moment it’s playing my Spotify 2021Wrapped playlist, which I will add is a excellent playlist of my most listened to songs throughout the year. Right now as I type it’s playing ‘Smells Like Teen Spirit’ which as Gen-Z would say, it's a banger… it’s been a rollercoaster of emotions over the last few weeks, well months really. ECGs and monitoring every other day are completely draining, we have a scan every week now. It’s a lot. So yeah my music is loud while I wait, read and wright. I'm blocking out what I can.
Today I should get more of an idea of how i'll be giving birth, and when. I’m extremely nervous, I feel sick and could probably cry however know one is crying here today and I’m not being the one to kick it off, the corridor has also started to fill up and there’s already not enough chairs.
We ended up in the Grange a week or so ago, I can’t remember when now my memory has got really bad the past few weeks! We had to go there from our Neville hall appointment as I didn’t hit ‘criteria’. Baby Cole was sleepy so I needed more monitoring, we had never been there before, it’s fancy AF! It’s like a hospital, hotel and a gallery all in one. Large white walls, lot's of modern art, the corridors there are massive and tall, it’s also a university hospital and quite new. Still hated being there though, also we had no idea were we where meant to go, Neville Hall sent us, told us there would be expecting us (which they were) however it was still really intimidating, I had to have monitoring and another ECG for Baby Cole my husband Tom wasn’t allowed in with me which I wasn’t a fan of! You kind of need your most important people around you at stressful times. But Baby Cole woke up a bit more while we were there so we didn’t have to stay overnight! As I sit here today in Cardiff university hospital, in the fetal medicine unit waiting in this very different looking corridor I think about all the staff working in the hospitals, with large corridors, small corridors, new buildings and old buildings they are all just trying to do their jobs and bring babies into the world safely. I appreciate their hard work, the NHS is also feeling like more of a safer place to me right now even in the pandemic (smug face, if you know me well enough, you know why. However this isn’t the blog to go into that!)
Looking back over my phone notes from the last few weeks I’ve been a little on edge some might say… Oh and my name just got called!
…Scan done! It was a long one! Lots of touching and with new people, I’ve been lucky the sonographers, midwifes and docs have been really consistent, but today I had new people. It through me off a little at first I was probably ridiculously tense laying down on the bed, but they were great and chatty and I relaxed a little. Then they called the doc in, he also did his usual checks, they are happy so I go back outside to wait and read over my thoughts again. Today seems to be quicker! But now i'm back into the corridor! Music back on!
As I wait and process my thoughts I try and make more sense of my phone notes, sometimes they are just a few words of whatever emotion I’m feeling, then other times they are paragraphs spilling my feelings into my phone as if it cares. But my phone is the only therapy I seam to have for the time being, my councillor is ill. Everyone gets ill, she’s not available for a while so i'm making a reel effort to be 'normal'. I did try to find a new one at 4am a few weeks back, it’s harder than it sounds! So I’ll wait for now, until Baby Cole is here and reassess my feelings. So for now it’s phone notes and over sharing, I’m actually feeling ok though, mostly. Just so very tired and stressed.
A few thoughts I seem to keep coming back to is there’s not enough support out there for fathers. I keep getting asked how I am which is ‘fine’, why isn’t my husband getting the same treatment? The stress these conditions also cause the fathers is very heavy, and they are expected to just carry on. I feel guilty, and then I feel guilty for feeling guilty, I feel guilty when I’m sad, I feel guilty when I’m happy. I seam to accidentally cause a mess, at least I’m good at cleaning them up though! Slowly. All the travelling back and forth, the time needed off work, my tiredness doesn’t just affect me there are a string of people it also affects, and this doesn't feel great.
The possibility of a financial implementation after the last big appointment has really dawned on me. Why didn’t I think about this before? My husband is great, and he makes sure that everything is always taken care of. We planned to have a baby, we talked, worked it out, it wasn’t a quick decision. We talked about some of the possibilities but this just didn’t come into that list. Know one is expecting this, to be told it will be touch and go for the first few weeks, maybe even months, longer than paternity would last. I need and want my husband with me, every time I think I’m in my worse possible situation then something else seams to get added to the pile that wasn’t in my head before. The stress that is on top of us is weighing us both down now, I wish I could take it all for the both of us, but I can't it doesn't work like that.
We have been told we will need to go back and forth even after she recovers and this will be apart of our life’s for a while maybe even a few years if there are complications. This should be such a happy time, and in many ways it still is however it’s getting more stressful as we go forward. So i'm still taking deep breaths when I need to and trying my hardest to have fun when I have the opportunity!
Although this condition isn’t super common it’s something the hospital have dealt with before and the death rate for baby’s who have been in their care with this condition is low. After my last blog some other people reached out who have known babies with this condition, this was reassuring, and it’s great to see positive outcomes! I needed that! After all awareness is key, and spreading the word for these types of conditions doesn’t prevent them but hope really does help other people! It’s still really hard though in many ways. It’s also great to see that some babies only spend a few weeks in hospital, a few weeks ago we had an official letter confirmation everything “preparation for a long hospital stay” was mentioned. (Sigh, I hope we are lucky and it’s as straightforward as possible)
All my appointments for the day are done! We got given an inducement date, just a few more weeks to go! Baby Cole's stomach is starting to pull a little towards her ‘defect’ now apparently, but apart from that all is looking good, she’s of course a little small, but all the best people are right! She is also still breach. They still haven’t decided how i'll be giving birth, as they are still hoping she might move. So I will find out the day before I’m induced if I’m having a natural birth or a caesarean, induced labour sounds invasive and painful, caesarean is terrifying. So I get to stay anxious about their decision right up until the day before I give birth!
Today after our appointment we did some Christmas shopping and I brought a few baby items, because babies need clothes, even tiny ones who will spend the few weeks (at least) in an incubator and in the special care unit. So now she is the owner of some little clothes as well as socks to keep her feet warm!
Next time maybe I’ll be doing an update from a hospital bed perhaps! We'll see! I’m exhausted, I need to make a hospital bag, that's my next task, little steps… one day at a time, right!
The Art!
I made some art! I did a few, it was great I had a burst of energy I guess, it's gone now! I have more to edit, I'll probably use them for my next blog update. Life is a story right? that's all we are after we have gone, we become stories, people tell others about us, the good and bad. Baby Cole already has quite an interesting story! We have soooooo many scan photos they almost all cover my dining table, I need to think of a nice way to keep them.
I refuse to photoshop my body, so I try and get my lighting right, shadows are a great friend! However it was VERY tempting to photoshop those tattoos off! They looked very different in my early 20's... i'm not a fan of how I look, which probably sounds odd because i'm always taking photos of myself right! But it's important to document my progress and to of course express myself.
I have to keep going, keep moving forward, keep positive. It's hard and stressful, life is full of up's and down's we are all just trying our hardest. Sometimes our hardest doesn't seam to work, but that doesn't mean we get to stop. We can't choose how our stories are written, we don't have control over every event that happens in our life's, but we can always try our best to be kind. That way when the stories about us get told we can be the warriors instead of the villains.
Thanks for reading! Sorry for all the typos!
Other pregnancy related blog's
One day at a time... unless time stops
What to expect, when expecting the unexpected
Helpful link for PAPP-A information click here
Helpful link for Gastroschisis information click here
Helpful link for miscarriage information click here
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