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 and that’s only if she starts to feed very soon and there are no complications. We have been told it could be much longer or it could be shorter there is just no timeframe. Then there could be set backs risk of infection etc etc… however a few months ago I had to listen to three specialist talk about the chances of Lunar dying and how her intestines could be on the outside of her body for weeks. If we come across any step backs then we will deal with it as a family.
January the 16th Lunar is still doing great! Some of the woman working here are amazing, I like the way everything is being handled so far. They are funny, smart and caring. I trust them with Lunar, even the ones that are training after all this is a university hospital. They seen to care so much, of course there’s the odd ones I get vibes from, the ones that are tired and a little grumpy. It’s a stressful full on job, even at a job you love you can have days were it’s hard. This is the type of place where caring really comes into play, you can see it in their faces, the investment, the determination and the passion. They are here on missions to not just to help these babies survive their illness but to thrive and go into every day life. I wonder what it’s like to go home after a day or night working this type of job. Can you switch off, I hope they do I hope they also get the ‘rest’ they keep telling me that is so important.
January the 17th tonight is the first full moon of the year!...Today my body feels terrible. Everything hurts I’m mentally and physically exhausted, all my body wants to do it’s feed Lunar, as it should. A few days in bed feeding would make the world of difference right now. But of course that’s not possible, I’m trying extremely hard to take the advice of “rest” I really I’m but I managed to fall asleep and wake up just wanting to feed her, which is sometimes painful. Which i'm taking as a positive but I feel like it’s just a waiting game to mastitis now at this point. I’m pleased with what I can produce for Lunar so is everyone else, but I know my body and mind well enough that it overreacts! The after pains of the caesarean are also rough, it hurts less around her, all those happy hormones etc. My body would be reacting better to everything if I could just feed her properly like I should be, it’s so frustrating however I just have to wait. She’s not ready yet even if I am, I’m also aware I’m a little ‘emotional’ nothing over the top, I’m controlling it well however I’m just completely nakerd now. I miss Deryn, I come back to my room to ‘rest’ and just feel awful about being away from both my daughters. It’s hard, I knew it would be hard though. Who wouldn’t find all this difficult, we are handling it well I think. The team keep commenting on how laid back I am, so I must look cool and calm, apart from looking exhausted of course probably why they also keep mentioning ‘rest’, I can’t rest!! This isn’t a holiday, it’s not an opportunity to get some good sleep at night without my children to wake me up, I want them to wake me up, I want to be running around at 3am because someone needs me. It will all happen, she’s strong I will get to take her home! I know that now, there are of course still complications and risks that could still happen but I’ve seen her now. Her determination and strength, yes she’s unwell and small, she’s also alert now she’s awake and she enjoys movement and using all her senses. Touch and sight she also loves to listen, they did some brain scans they had to ask my permission of course, we agreed however I was never worried about that side of things, she’s going to be inquisitive and energetic I can just tell. I encourage Deryn to be as independent as possible, however I’m always on pins Deryn also knows this she’s also always tell me to “relax mummy, I’m fine” and her new one “don’t have a heart attack” I have to work on my anxiety levels with them both I don’t want this experience and my own nervousness to get in the way of their growth and independence.
January the 18th Deryn came up today. Seeing her was amazing, Lunar is still stable so Tom and I could both spend some time with Deryn. It’s tricky being away from them both, it’s like a push and pull. I want them both together, I want to be laying in bed with Lunar feeding and Deryn next to me watching something on Netflix. I feel as if I’ve had my new born stage of this experience taken away from me a bit. I didn’t really have the pregnancy or birth I was planning either so make sense that this stage is wrong too. However we all just have to find the best way of dealing with it. After a lovely day of a family walk around the hospital grounds which are very nice! A McDonald’s in bed watching Netflix, because I’m just exhausted and my body hurts, a Pokémon card battle, a activity book kindly given to us by the children hospital councillor it was then time for Deryn to go home. She cried and begged to stay with us or for us all to just come home with Lunar who she has been unable to meet yet. It was heartbreaking, I tried my best not to cry too as I didn’t want to upset Deryn more. I fail at this it was just to hard, we had a chat and a cuddle as we both cried. For a six year old she has a lot of understanding but she’s still only six and this is hard for her, she really liked the RMH and saying good by is just too hard on us all so we have decided as a family she will be coming here to stay with us full time while Lunar is in NICU because I need both my children close to me, and they both need me. Deryn has a few more days in school while be prepare for her to join us. This will mean that me and Tom will have to visit Lunar in turns however as nice as it is to do this together we need to juggle our family for a while. We are both confident that we can do this, or we can at least try, it’s so hard to know what’s the right and wrong way to go about all of this. Is there a right and wrong way? I honestly don’t know, I’m trying to do my best, and I feel like we are handling this well, I just can’t be sure. These situations are hard! As I sit here writing this one of the nurses has noticed that i've been crying and now keeps trying to talk to me...
January the 19th Lunar is in an incubator, this time the lights are blue, she has jaundice. So they are upping her blood tests, my poor baby gets her bloods done every 24hrs which will now change to every 12hrs for a little while. However it’s all necessary, she also gets her stomach drained every few hours and has been since day one. It looks like green slime, we need to wait for this to become clear and for her to poo before there can be a feeding plan in place. When she can feed she needs to be closely monitored, theres still risks however she’s also an incredibly strong baby.
Tom reads to both our daughters every day, in person and FaceTime. I express milk, as much as I can it’s a little difficult still sometimes but will get easier. We FaceTime family and friends and do our best to also eat and sleep. It’s exhausting, I sit next to Lunar for as long as I can, as are allowed some touch now, she's even been out a few times for me to hold her, it’s difficult with all the wires I can’t just pick her up. I have to have her passed to me, and I can’t have her cuddling into me as much as I would like, but she responds well to touch and voice, now she’s awake and off her ventilator she’s very alert, in fact she’s very much like Deryn was! They look a like too! Both born with a full head of thick dark hair, Lunar is quite a bit smaller, however she’s still a good size!
As all (well most) mothers will know caring for our children’s needs is a powerful instinct. All I want to do is pick her up and feed her, but I can’t… she looks starving! It’s almost slightly amusing in the fact that she’s never actually been fed, she has vitamins and fluids straight into her body, she’s never tasted anything however she clearly knows what her month is for now she’s awake and off her ventilator! She makes all the signs, and of course my body reacts to that, it’s painful for us both! My record so far this week is just over 600ML pumped in a day. She now has a fridge full of my milk ready for her, she will not need all of this for a while however when she can feed from me we will be making up for lost time so I want a good supply also my body is in such overdrive from how hungry she looks all it’s doing is producing milk, weather I want it too or not. I’m finding this a bit painful however it’s still early and will get easier!
The 20th of January she’s a week old!!! Deryn will be here soon and Lunar has stayed stable for a week. I have a lot of thinking time being here. I can’t help but people watch, there are so many people walking around the hospital, so many stories. I catch glimpses of them from time to time, I can’t help but hear, to see reactions and to feel their emotions sometimes which is weird because I don’t know anyone here. While i’m sitting with Lunar I think about all the other parents, all the babies in NICU are unwell, obviously or they wouldn’t be here! But some are really unwell and are not classed as stable. some will be back and forth all their life’s, I find this hard to think about as this could have been Lunar. I’m here a lot so is Tom, we are actually very lucky as I’ve found out these situations are tricky and do not necessarily qualify for compassionate leave, and the two weeks Tom can have off just wouldn’t be suited for our circumstance. However Tom has lot’s of holidays he can take, so we will make that work for us because I can not be here on my own, that would just be to hard and just because Lunar is stable now doesn’t mean she’s not at risk, Tom needs to be here with me for as long as it takes. I look around and see babies without parents, there could be many reasons for this, too hard to be here everyday, other commitments a few parents have also been self isolating due to COVID and other illness, I could not be away from Lunar so I really feel for the parents who can’t be here as often! It must be incredibly hard, there really isn’t enough support put in place for fathers, I really feeling sorry for them in fact, and the mothers who are here without their partners because they have had to return to work after just two weeks it’s really not very long. We are so lucky we managed to sort our situations out it makes it slightly easier.
This week has been hard, also positive and we have still managed to build up many lovely memories. I’m also desperate to see my sisters and close friends as I want to introduce them to Lunar, in my normal world my sisters would have met her within the first day! My closest friends would have followed a few days after of course they were first to know of her arrival and have been updating family and other friends with any news, I’m not great at replying to people so the people I do reply too pass on information it’s a good system they get daily photos but it’s not the same. This was not the pregnancy I was expecting, and it really wasn’t the birth I had in mind! I feel as if i’m now also getting part of my new born experience taken away from me, I still haven’t kissed Lunar on the head, I still haven’t fed her, I haven’t bathed her, I haven’t rubbed my nose against hers and she hasn't touched my face yet with her little hands. She hasn’t even seen my face without a mask on, she knows my voice and she responds to my touch, she’s small and still very new but when she’s unsettled I can calm her down even with all the wires so she knows she’s loved. Loved by me, the person who stands over her in a mask with tired eyes and an achy body. She’s also loved by Tom and loved by Deryn as a family love has never been an issue.
My body and mind feels pushed to its limit, my body wants to be around Lunar as much as possible, again as I mentioned in my last blog it’s that human instinct to want to protect and feed our children. It’s primal and strong, it’s also a fair walk to get to her room. Noah’s ark is a great hospital but there are so many corridors, stairs and lifts, it’s a walk with purpose when we are on the way to see her there’s excitement and a quick pace. I also think that’s why I’m hurting, I keep get told to ‘rest’…how? In a normal situation yes I would be spending time in bed with my newborn feeding and cuddling her, I wouldn’t be walking around this much back and forth, expressing this much milk or talking to so many specialists and nurses. It also feels really wrong to come back to the room and ‘rest’ while my children are not with me, I feel guilty for it, especially if me and Tom are a little relaxed, talking about something random and joking around in the moment it’s obviously great because it’s our normality and it’s like a little reminder that we have a normal life waiting for us, but it’s also hard because while we are back in our room getting some time together and trying to be relaxed so we can function better there’s a nurse with Lunar watching her, settling her while she cry’s and keeping her safe. My jobs, I’m grateful for their help and support it’s just I should be doing it all, I want to do it all!
She obviously can’t talk back, but she loves a conversation. I talk to her about all sorts I tell her about the type of life we have waiting for her back home, about the nice house we get to live in and how lucky we are. I talk about Deryn and all the activities she gets to do, this is not only a great bonding activity, because my voice seems to relax her but it’s also nice to realise how lucky we truly are. Fate is weird, we get on our life paths are we face all these obstacles and life gets so hard and heavy but then we get lead to the moment I guess are meant to happen, all those difficult moments over the past year have lead me here, sitting in NICU staring down at a tiny baby who will eventually get to come home with me, she not ‘mine’ people don’t belong to each other. She’s part of me yes, but she’s her own person with her own path, she will grown into the person she’s meant to be and I’ll get to watch that. These are the thoughts that push me through the tricky moments.
This week I’ve held her, I even had skin to skin for a very short time! It may not have been in the ideal setting, and she was covered in wires but it was still a moment that is stored away in my happy memory box, the second they mentioned skin to skin my top was off they laughed and asked if I wanted the blue curtains around us, I laughed to i'm not shy just give me my daughter. No one was around anyway only nurses, these types of situations are hard. I had no idea of the emotional and physical strain. It’s an impossible situation to be in, and everyone will go though something like this differently. I think we are handling it well, somedays better than others. I want to go home so badly, I want so many things right now that are just not possible however she’s safe and stable. We still have no time frame of recovery which is frustrating. I hope we are lucky and fall into the same category of the people who got to go home within a few weeks with a baby with this condition, of course if that's not possible I’ll deal with it, I love her and she’s perfect just like Deryn is.
I've been thinking about this image a lot the past week, It's an old one, well over a year old in fact. This one always confused me a bit, I'm still not sure if I'm taking something away from myself or given myself something. I'm also holding a moon, which is where Lunar's name comes from, ironic right!... It seems fitting for this blog! I can't wait to get home and create I have a lot of creative energy because i'm frustrated.
Other pregnancy related blog's
Thanks for reading! Sorry for all the typos!
Helpful link for PAPP-A information click here
Helpful link for Gastroschisis information click here
Helpful link for miscarriage information click here
Helpful link for ECV information click here
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