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Pain and laughter

Updated: Jan 28, 2022

If you read my last blog which once AGAIN had terrible spelling and grammar in due to pain and medicine you will know that baby Cole, who now has her name Lunar Jane Cole was born with Gastroschisis, a condition that means she had part of her intestine on the outside of her body and she needed an operation soon after birth. I've already written about her birth and first day, here is the first week of little Lunar's life, it's been tricky having a baby in NICU is very intense. This blog entry again is taken from my day to day journal which I keep to keep myself busy when I'm stressed, it also helps me process difficult feelings and experiences.

The recovery so far, a week on…

It’s now the 14th of January! Lunar is 1 day old, it’s 2.40pm(ish) i’m once again waiting on the pain meds I asked for around an hour ago, I stopped asking and now just ring the buzzer feeling like a junkie begging for a fix, they are busy here it’s fine, I’m good with pain but it's keeping me awake. I still think I would be in less pain if I had Lunar with me. It’s a catch 22 I guess, because if I wasn’t in this pain I would be next to Lunar in her incubator, she’s having some more tubes fitted, these tubes will go into her stomach for at least at 3 weeks so they are very important. Tom is with her, he’s not allowed with me as visiting hours are over now. So I’m on my own again, unable to sleep. The plan was I will take some pain killers and sleep for an hour or two if I can and then il go see Lunar, but first I need the meds so I can actually sleep. Tom’s now waiting on our room key for the RMH he can check in today and I will join him in 1 or 2 days hopefully. Tom having the room keys makes me so much more relaxed, to know he has quiet space tonight where he can process the last day is great, it’s so much for us both to take in. He needs sleep, because if I can’t take in any information because I’m too exhausted and overwhelmed him being rested means hopefully he can!

Just gone 3pm I’ve been moved again because the room I was in had a new influx of new born babies and once again they felt sorry for me. I’ve had some pain killers now, I’m now in my 3rd room and I think they will keep me in this one, I’m on my own, it’s very small. The idea was to move me away from the mums and babies but I can still hear them crying I just can’t see them now, or know one can see me and my face… it’s hard but I get it, out of sight out of mind? I don’t like the vibe of this room I’m not sure I’ll be able to sleep here, something about it is making me nervous it has the “corridor of doom” resemblance to it, I’m not sure why! I had to go downstairs to get to it meaning I’m quite far away from Lunar now, I can hear people but I feel isolated, I now also have new midwifes I guess as I’m in a different part of the building. My hormones are fluctuating now, emotions up and down, to be expected. I’m starting to feel like I’m missing out now, it’s probably just because I’m tired...I don’t like this room. It has awful energy, which sounds insane, I’m I going insane now? I don't think can stay in this room!

January the 15th (is that the date? January is always a weird month right!) I’ve spoken to a midwife, the doctor is coming round to assess me to see if I can be discharged. So I’m on best behaviour! I will literally do star jumps if it means I get to leave this room!

And like that BOOM i’m no longer a hospital patient! Tom’s on his way to wheel me out! I can’t wait to be with him, I also can’t wait to get out of this room, I hate it in here!

Every time I laugh it hurts, me and Tom mess around a lot everyone has parts to their relationship that other people don’t see necessarily. We are constantly laughing when it’s just us, which is usually fine, however I’ve now told him he’s not allowed to say anything funny for at least 2-3 days because I honestly can’t take any more laughter! I guess laughing uses stomach muscles so make sense it would be so painful! There’s been a few moments of uncontrollable laughter, I’m starting to find the type of things funny again the older me would have which is a positive sign. Painful but positive. The last few days have been weird and are a little blurry, but I have a few funny moments which will stay with me! We were walking up to see Lunar this hospital is a maze (in the early hours of the morning it like a seen from a horror film!) It was very early in the morning because we have 24hr access and I don’t sleep well so make sense to see her anytime we needs too. There was a man cleaning the floor, he was using a large buffer machine that he was driving. He miss judged the door while turning around and crashed… I literally couldn’t stand up, it was hilarious. I also felt terrible, because I was very clearly deeply amused by his misfortune. It hurt so much, I couldn’t breathe I thought I was going to have to lay down on the floor! Then someone thought I was in labour, because the pain from the laughter, I was taking deep breaths and I was also holding my back because it really hurt. Yeah it probably did look like I was having a contraction, but I wasn’t so of course this was also hilarious to me, I don’t know how I didn’t pass out! “I’m not even that fat anymore!” Was my reply to him… I do still look a bit pregnant, but not in labour pregnant! Tom found this all funny too. I’m pleased we are still managing to find these moments with everything going on it’s been difficult so laughing with Tom while almost passing out was a positive.

It’s also incredibly hard, I sit next to her and I feel my body producing her milk so that’s a great sign for us both! However this also hurts, because it then needs to come out, which can feel like an intense pressure. It’s also very bitter sweet because I’m making it for Lunar and she still can’t be fed.

As I’ve already written in my last blog update because her bowel was looking a little unsettled and they thought perhaps a part would have to be removed if they didn’t act fast they decided to do the full operation fast! A lovely quote from one of the surgeons, I can’t remember their names there is just to many…“She set her own course, she decided she wanted the operation sooner rather than later” and she did! We were all expecting a silo (her bowels in a bag above her slowly dropping down into her stomach) or at least two operations. Everyone is surprised, as I’ve mentioned before there were 17 people in the room to help deliver Lunar and to help get her to theatre ASAP and stabilised. I remembers some faces but mostly just voices because admittedly I had my eyes closed for most of the operation taking deep breaths. They all remember though! A few have come to say hello, she has daily check ups and as its a university hospital there’s always groups of students. We are kept very well informed of course we don’t understand the medical terms, but there’s always comments like “she’s doing exceptional” and bragging “I was at her delivery” by enthusiastic voices, we have even been stopped on the way up to visit her by the team and students (most of the time I have no idea who they are) “you’re Lunar parents right, she’s doing so well!” It’s nice how excited everyone is about how successful it’s all going, having the operation done so fast is apparently a massive deal! This is also the first time many of the students have seen this defect, however all the babies here get such good enthusiastic care. They are all treated like little rockstars, and cared for very well.

I know we have a long way to go, she can now breath completely by herself, she’s still on some pain relief and need 24hr monitoring and care. She can’t be fed yet, she’s on a drip of vitamins. There are slightly less wires now, but still a lot. It’s still incredibly difficult of course, we can’t take her home yet, I want her home so badly! but we are here for a while the best case until February we were told