Updated: Feb 2
If you have read my last few blogs (links at the bottom of the page) 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. We are now home!!! 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 write to keep myself busy when I'm stressed, it also helps me process difficult feelings and experiences. This week I get to do our official new born photos for Lunar I’m obviously really excited! I’m starting to plan them, I have some creative ideas of course! These are some quick ones off our phones, I had a camera with me but I was too preoccupied with the situation to do much documenting image wise! I can’t wait to get back on track with some creative work, after some rest of course!
It's now January the 21st obviously we are STILL HERE in NICU, tomorrow Deryn is coming up to live with us in the RMH I’m so excited also a little worried because I hope I’m doing the right thing for my family. Children just need love and time, it’s funny how quick life can switch. My priorities, needs and wants are now all completely different from a few weeks ago. The past year has been so consuming I’ve got lost a little along the way so I want to re-find my path… but first I need to get home, to have all my family together and work everything out. Lunar is doing great with her progress she’s been ‘nil by mouth’ meaning she isn’t allowed to be fed yet, she has a longline that is providing her with vitamins and fluids, she’s still getting her stomach drained every few hours and having blood tests done. She’s very closely monitored, I’m allowed more involvement now in her care I change her nappies and settle her when she’s upset. She looks so much like Deryn.
January the 22nd Tom’s gone to get Deryn, I can’t wait to see her. I’m nervous on how we will juggle everything. I got up early (obviously) to go see Lunar and express some milk for her, she’s now being tube fed! This is great she only gets 2ML every 2 hours so 24ML a day from the 600-800ML I produce, I’ve joked with my friends about selling my milk, which is most definitely a joke. However what am I going to do with all this milk?! Because as soon as I can breastfeed her myself that’s the plan, Covid has made donating milk more complicated apparently and they don’t do that here, which I find a little odd but we are still in a pandemic. If I keep over milking it when I’m home i’ll look into the options perhaps I’ll just keep it all might come in handy if I get ill so Tom can feed her. This morning has been lovely, Lunar has been in a lovely relaxed mood, she can’t see me smiling at her because she’s never seen me without a mask on, however she now focuses a little on my face she responds great and likes to have her head touched. Now she is finally having some milk it’s just a waiting game, time feels so different here, there is no day or night, there is this time-limbo.
Today although I was having a lovely morning with Lunar I had to leave, I’m now sitting in the hospital cafe having a hot chocolate by myself. I had to leave because although she is lovely and settled some of the other babies are not. I think one is quite unwell, he’s very upset, he sometimes stops breathing, I heard that his mum is on her way. They brought the X-ray machine up, most of the babies in this room has stomach problems like Lunar some also need help breathing and there is always so much beeping. They have loads of equipment here that can be brought to the babies bedsides to save moving them. They managed to settle him enough to get what needed done and at this point I decided to leave. Lunar was flat out, I felt guilty about going, leaving her on her own feels like something I’m going to get in trouble for, it’s a feeling like you get when you have done something wrong as a child and you are not sure if you are going to get punished. I feel guilty a lot at the moment. It’s weird because I’m not doing anything wrong by not being at her bedside to have a break but as a parent I guess it’s just instilled in me to feel like I should be there.
I can tell that Deryn is getting frustrated with the situation, it will be better when she’s here, maybe I’ll sleep a little better, my dreams now have elements of this situation in. Of course, it would be weird if they didn’t really, between running through woods carry Lunar while wolfs chase us, to her not making it passed her operation, seeing hospitals equipment in the room in the middle of the night while I’m half asleep and dreaming of being unable to move it’s been intense and they are messing with my head. Then of course my body wakes me up every few hours with a painful body jerk, I’m sure these are worse up here or maybe it’s just because I hurt and I’m noticing them more.
The Noah’s Ark hospital have actually got an in-house mental health team. This is a hard time for parents, so make sense that they would have an on site team. I just do not have the time, also ‘talking’ isn’t that straightforward but I think it’s great they offer this! My body feels like it’s begging me to sleep while my mind is in disagreement, do all the other parents feel like this?
Lunar has now poohed! It’s day 10 and she’s finally done it, meaning that we have hit a milestone in her recovery! We have been waiting for this! She's doing so well, she needed help though. It’s like they are trying to jump start her, they gave her some medication to help get her moving! As I’ve mentioned she’s aloud a very small feed via her feeding tube now. She’s pulled this out a few times! She’s a little stubborn, but maybe this is a good thing, she strong like Deryn.
January the 23rd It’s day 11 and I have Deryn with me! Yesterday we played football and they have a treehouse here… kids are hard work! Worth it, but still hard! Deryn has missed us and just wants to have some fun, as do I! However my body is really feeling this, I still haven’t really had my ‘rest’. I don’t even feel like thats started yet, my muscles ache, there’s so much walking needed here! Every time I feel less recked I do something like moving too fast or laughing and my stomach reminds me that I’ve had an operation too… as I’m lying in bed feeling a little sorry for myself wishing I was feeling stronger Tom txts me, he’s over with Lunar. I had a lovely morning with her now it’s Toms turn, we constantly txt each other updates and photos so neither of us are missing out and we are both informed about any medical updates. He txts me to let me know that they want me to try and breastfeed today, which for some reason fills me with nerves as well as excitement. Of course this is positive news! She’s been tolerating milk, and she can digest it well, news we have been waiting for! Now it’s my turn to see if I can get her to feed off me. I’ve also just pumped around 300ML of milk out my body! So I need to make more and soon as they want me to go over in an hour. They have already said that the first time I feed her myself I don’t need to be full as she might feed to much and make herself sick, so already pumping milk before my visit is probably for the best! She's doing so well, I almost have my head around the 28 days here best case, so getting to go early would I be amazing! If she can feed from me they might take her tubes out, she will still need her vitamins for a little while and to be monitored but this could really cut our time here! And I’m off to try!
It was a little tricky, I had to pump first again so I was more or less empty of milk. All I do is pump out milk! Then as I was trying to get her to latch they were also tube feeding her at the same time, it was nice to have skin to skin and I’m not that shy when it comes to my body however it wasn’t how I imagined it would be. I made a few jokes about the new bra I brought for this moment and that I hope I didn’t get performance anxiety… This isn’t the place for jokes, no one laughs here. I was also more excited then she was, to be fair to her I was drained of milk, she did managed to get some I obviously had to help quite a bit by hand expressing, I more or less just dripped milk into her mouth. It was hard, and of course I had to stay relaxed as we were skin to skin so it was important to me that she was as relaxed as possible also for bonding. I guess it will take time however I just want to go home so badly, I don’t want to be here, I don’t want any of us to be here and feeding her myself is a massive milestone in that. It’s also really important to me, apparently the first few times feeding her is more about her getting used to me and where her milk will come from. Which make sense, and they know what they are doing, once again I have to be patient. I look forward to the days I can give her a full feed!
January the 24th I cried while pumping milk this morning only slightly it didn’t even hurt I’m just sick of it, I’m frustrated and sore, my stomach muscles hurt so much! At this rate though I’ll fit back into all my clothes again in a few weeks! It’s so stressful... It’s almost 12pm and I’ve not even seen Lunar yet! I feel terrible, as parents we are juggling everything, team work is good as we take everything in turns. Tom is at her incubator now spending some time with her and I’m with Deryn, we have done some schoolwork, drawing and watched a space documentary. I love spending time with both my children, I can’t wait to be able to have them both together. This is incredibly difficult but necessary I have to remember things will get easier!
I’ve never ever been this tired. This is probably the hardest day so far, (they do have a tendency to keep getting harder though) I’m not sure why hormones maybe or I’m just home sick but I feel like I’m getting close to loosing my shit with someone. Which isn’t nice, know one here deserves me to be grumpy with them, everyone is just trying to do their job and they are doing their jobs well.
I get a 2 minute window every 2 hours to try and breastfeed Lunar, I have to pump before, I get to feed her while she’s being tube feed at the same time. It’s incredibly tricky, I’m finding it physically and emotionally hard work. It’s not an ideal setting, I feel like I’m being watch because they don’t want me to “over feed her and make her unwell” sigh, I just want to feed my baby on my own. I’m finding myself feeling a little on edge, some of the nurses here are lovely some I just don’t like. I think this is probably a me problem, I’m getting grumpy I know that, I also don’t like the idea of anyone else doing my duty’s for me. I’m her mother, I should be doing every feed but it’s impossible while she’s here and I’m just so tired. I don’t like tube feeding her, however while I’m here and it’s time for her tube of course I do it too, it just feels wrong the tube goes into her nose and straight into her stomach but she needs it. As she’s doing so well they keep increasing her feeds this is of course positive. She can’t taste the milk when she’s tube fed it but she can feel the sensation of feeling fuller.
January the 25th she’s doing great, me not amazing I just want to go home. Leaving her in the hospital is getting harder, especially as I’m away for long periods of time sometimes because I have to eat and sleep which is feeling pointless. I’m grateful that Deryn is here, although I’m worried my grumpiness is having an effect on her. She keeps asking me what is wrong, I’m trying really hard to still be fun but it’s hard… After this morning’s consultation they asked if I had any questions as they always do, I asked when I can take her home. They giggled I wasn’t joking for once, I just want to be home, as they laughed at my ‘jokes’ today I just wanted to cry obviously once again I didn’t. “Some babies are here for months with this condition, she’s doing very, very well. She will stay in this space for a few more weeks before moving to the next room” …a few more weeks, of leaving her to go eat and sleep, a few more weeks of not feeding her fully myself, a few more weeks of not knowing if I’m doing the right thing with Deryn. I haven’t got a few more weeks in me.
January the 26th She having a drip put into her hand so she can have some fluids and vitamins, as her longline is out. I hope she leaves this one in… she’s always pulling out her tubes and wires. I had a chat with the surgeon today who did Lunars operation, I really like her, in fact after what she did for Lunar she's probably up there in my top 10 people. She has agreed that I can now feed Lunar for 5 minutes at a time as long as I pump first and we monitor her intake. Today I’m on best behaviour, yesterday I was grumpy and frustrated which just isn’t the way to go about this situation and the nurses are here to help.
January the 27th I’m quite sure if I don’t get on top of my body I will get mastitis soon, I feel unbelievably dehydrated I can’t keep on top of my fluids this week. Not from lack of trying I’m drinking so much and eating as much fruit as possible, because I’m so thirsty, the milk expression is intense it’s all the time! It’s feels slower to pump, I’m using an electric pump these days with Deryn I didn’t have the luxury. The best thing to do with mastitis is to just get the milk out! My body will not stop making the stuff… I’ve lost the will power to pump the past few nights. I just can’t be bothered, which is going to make me ill obviously, I’m just tired so tonight/today/this morning what ever day it I’m pumping. I pumped at 1.30am and then again at 6am, and I guess il just have to make an effort every night to do this! Otherwise il get ill! If I was at home I would take a bath and relax too, as I keep getting headaches, but I can’t do that here. I bet all the other mums feel the same, I can see why people find the milk expression too much but I WILL keep going.
Tomorrow is my birthday, 31 years old! I still don’t know what I want to be when I grow up… tomorrow is a big day, we are being transferred from Noah’s Ark to Prince Charles hospital, this has come as a shock! This outcome was never mentioned! It was only a few days ago when I asked about going home we were told we were staying put! It’s a positive step as Lunar is stable enough not to need the level of care that Noah’s Ark provides, of course it’s been made clear we could end up back here, but as her digestive system seems to be working we can move into the next faze of Lunars recovery. I’m desperate to go home, however going home without Lunar is not the plan! This is a curve ball, at the moment I’ve across the road from her, and I have the rest of my family with me we feel almost in one place. I will still get 24hr access to her once’s she’s in Prince Charles however I can not sleep there, meaning that when I leave her I’ll be 30 minutes away, I still need to eat, sleep and shower how I’m expected to get on with some aspects of a ‘normal’ life, I have no idea… I hope it’s not for long apparently her ‘turn around time’ for this condition has been amazing.
January the 28th We are on the move… she’s in a travel incubator and I’m feeling sick because I’m not allowed in the ambulance, or to even follow them down apparently that’s “illegal” which makes no sense to me, because we have a six year old in the car with us so we would be driving carefully anyway! I’m actually fuming about not being allowed to travel down we with her, how is that fair? All the bull shit here about “rest…and mental health” blah and all they have done added to my anxiety over the last few days and I’m at my limit. Of course the ambulance team are lovely and the rules are for everyone and I have to follow them, but that’s not the point. I’m not even allowed in the lift and to watch them get her into the ambulance!!! We are not going home, we are being transferred. What if something happens and I’m not there. You hear of stuff happening, stories on the news. She’s being signed over, like she’s a parcel… It’s one of the nurses I do not like today, most are lovely and helpful this particular nurse shouldn’t work with people… I’m with Lunar a lot as much as I can. However admittedly when this nurse is on shift I tend to spend my time with Deryn and wait for the change over because being in a room with her annoys me, I’m also aware that this could be me. It could just be that I’m being sensitive, I’m here loads with all the other nurses we chat and I feel supported by them if I have questions. However this nurse has really pissed me off today, more than she has before I’m glad I’m wearing a mask because I’m quite sure I’m snarling at her. Literally in the last 10 minutes she has to be around me she gets some more digs in, “I’ve spoken to the surgeon, I’ll told her you need to be around Lunar more if you want to establish breastfeeding” …I felt my blood pressure go up, this is an impossible situation being made to feel like I’m not doing enough isn’t helpful. I just ignore her, I’m not the only parent she’s off with she needs retraining or I need to relax probably all of the above. She wouldn’t let me feed her myself the one day even after I got ready for it, but I respected her decision. I feel like I’ve jumped through hoops, I’ve drained my body of milk, one nurse called me ‘extreme’ the one day for trying to feed to much, so which one is it?! Am I too much or not enough? Or am I just being over sensitive.
It’s positive though, we are moving in the right direction! Lunar has graduated from Noah’s Ark NICU to the Special Care Baby Unit in Prince Charles, Lunar now holds the record for being discharged with her condition from Noah’s Arks, the record was 19 days… now it’s 14! Deryn very quickly got to meet Lunar as she was in the travel incubator before she when onto her new the ward, this really wasn’t how I imagined my two children first meeting each other but nothing is how I imagined it. Deryn is obviously not allowed on the baby unit so Tom took her home for a family member to watch her while I stayed with Lunar. The ‘hand over’ of Lunar was a little intense she needed swabs and there was once again a team of people lots of medical talk and from signing. How I’m still standing and awake I don’t even know.
My stomach feels like I’m on a rollercoaster as we arrive in Brecon, Tom needs to run and get some shopping as we still need to make sure Deryn has everything she needs now we are back home. I decided to stay in the car because seeing people without having Lunar with me isn’t right. And Brecon is small, I just know I’ll see someone and I’ll get asked questions.
January the 29th Lunar is in her incubator and I keep falling asleep in the hospital chair I’m so tired, I don’t know how people can do this. I was allowed 7 minutes to breastfeed today, I might be allowed a full feed tomorrow if everything goes well. My body is ready for it and Lunar looks ready! She doesn’t even look unwell at all anymore… I really like the nurses here, but i’m not in a great mood and my head hurts.
January the 30th I gave the nurses permission yesterday to bottle feed Lunar if she starts to ask for it, I have mixed feelings about this, feeding Lunar is my responsibility however a milestone to get her home is removing the feeding tube and I can’t be here all the time. When I arrived at the hospital this morning they informed me that she had her first bottle feed early this morning. She still has her tube in as we need to see how it goes, there a stay over room here that eventually il be able to stay in with her to see if I can breastfeed Lunar through the night, this is apparently my last hoop to jump through, I could do this now however I have to wait. I’ve ask a nurse to ring the doctor and ask if I can do this tomorrow so we can make actual plan. Also I’m starting to get really irritated which is me, it’s nothing the nurses here are doing they are all lovely. I’m not feeling lovely, I’m feeling grumpy, tired…I’m feeling like I’m being pushed away. If anything in my life is going to break me it will be this. To feel so close to being able to bring her home but not yet sure when that will be is becoming tricky to process, which is strange because in the past few months we have been through worse than sitting in a nice warm room cuddling a beautiful baby. I think I’m just at my limit of exhaustion it’s taken a while I guess but my body has finally had enough of my bad sleeping habits!
They are now letting me stay at the hospital TONIGHT I think they could probably see how desperate I’m getting now to have Lunar home. She’s also feeding well I’m allowed to breastfeed her properly today however I need to show I can feed her by myself through the night and for her not to be ill because of it, so we are giving it a go. I was expecting her in the room with me, however we are still waiting on her COVID swabs back from the lab before this can happen apparently. Another hurdle, I like all the nurses here and I respect what I’m told however I don’t really get this rule I breastfeed her that’s very close contact so why can’t she sleep in a little cot next to me while I’m here? However I’m here, in the same building if this goes well they will talk about me taking her home!
They decided to let me have a cot in my room so we are officially on a sleepover, Deryn was devastated and cried when I told her I was leaving again for the night. I once again felt terrible having to juggle both my daughters, I need this experience is over soon it’s so hard! The room is nice, and the bed is comfortable I would sleep on the floor with just a pillow if it meant we were a step closer to home.
January the 31st… She feed through the night great, little and often as new babies should. It was obviously both amazing and tiring, we had to write down times and durations of her feeds, she’s just had her daily doctors appointment and they are happy she no longer needs oxygen, she no longer needs pain meds, she no longer vitamins or fluids, she no longer needs a feeding tube so she long longer needs to be in hospital. She needs to be home, we all agree it’s the place now so we can progress. So she’s coming home after 18 days in hospital 10 shorter than we were told was our best case sinario today we will take Lunar home. Of course it’s not all straight forward there are forms, people to talk to, a few more tests and then there will be follow up appointments. The journey is not over yet but at least we can all be together now!
We are ALL home! I can’t even explain how hard this experience has been, how hard the pregnancy was… it’s been incredibly difficult from start to finish mentally and physically draining. Lunar has been through a lot for a new born baby, an operation sooooo many tests and wires. She’s actually a really chill baby happy to just be cuddled and take everything in. She’s also feeding amazing, I forgot how exhausting breastfeeding was! We obviously demand feed, so any time she wants a feed I feed her, I didn’t think we would get to this stage for weeks yet so every time I’m woken up in the night for a feed by a little cry I’m reminded of how lucky I am. We could have been in hospital for months even longer not all the parents on the NICU will get to bring their babies home, everything could have been different. These experiences are different for everyone but they all need so much more awareness because these conditions do not discriminate and could happen in any pregnancy. My mental health has really been hit the last year, it’s been very tough, the stress and anxiety of this pregnancy had an impact on every part of my life. The birth and the weeks we spent in hospital will take a while to get over, I didn’t need any more life complications but I got then, It wasn’t my fault and I need to remember that more. I feel the feeling of guilt that a mother feels when we go through this situation isn’t talked about enough, throughout the pregnancy I felt guilty. The questions I would ask myself- “I’m I doing enough? I’m I doing too much? Did I do something wrong? Are people judging me? Do people think I did something wrong? Are people now resenting me?” Hormones and stress are tricky! It’s done now, I was so excited to be pregnant, then the 3 month scan felt like being kicked in the face. All the appointments, the phone calls, the tests, the sleepless nights, panic and anxiety attacks took time I’ll never get back, but Lunar is worth it all!
Most of the team did a great job, it’s not easy handling stressed out parents with ill babies! We have been really lucky and are really grateful even with all the stress! (I may have been hard work once or twice…)
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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