Updated: Feb 2, 2022
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