Tuesday, 24 April 2012

due date party

I got carried away.

As Skittle was discharged before his due date it meant we were home and could celebrate. I wanted to celebrate in a kind of low-key, just the 3 of us, make it special kind of way. Then we decided as hubby was off for a few days we'd go and stay with my parents and we could celebrate with them, make a cake, light a candle - that sort of thing. Then the grandparents got involved, they wanted to see us, I really didn't want to end up driving around doing lots of visits so we invited them all over and suddenly we were having a family party with 12 people!

I got even more carried away.


I decided I wanted to be the one that made him a cake. So off to pinterest I went looking for lovely baby cakes. Got fixated on this one and set about trying hard to replicate it. It by no means looks anything like as professional as the one in the picture but it does at least resemble Winnie the Pooh and Piglet and for my first icing creation I thought it wasn't bad, even if I do say so myself. Once I'd got obsessed with Winnie the Pooh, that's it,  I was off. I made everyone a little invitation, bees out of icing, table decorations, bunting with Skittle's pictures of his development so far, even a welcome sign. Honestly!



We had a lovely time. It was overwhelming though. I was exhausted at the end of it and they only stayed for and hour and a half. But it was so special and I so wanted to celebrate him.



I have to admit, I sort of wish we had just been more low-key. I really struggled. I wanted to love every minute but it was a bit much for my fragile social skills to handle. Why did I do it I hear you ask? Partly because I'm convinced something terrible is going to happen and I'm going to lose him and not have a birthday party so I wanted to get one in just in case. Irrational, irrational fears. And partly because I felt deprived of a baby shower pre-birth and wanted to make up for it.



Grandma made scones. I love her baking. Maybe while I'm on maternity leave I could learn how to bake more than a packet mix cupcake (the Winnie-the-Pooh cake may have looked ok but boy did it taste bland and feel dry). My little sister made a baby cake. And clearly hubby and I decided blue was the colour of the day and accidentally wore co-ordinating clothing. Slightly cheesy? I think so. But hey I like photos of the 3 of us so I'll be ok with it.



We had 4 generations - 3 Great Grandmothers, 1 Great Grandfather, 2 Grandmothers, 1 Grandfather, 1 Step-Grandfather and 2 Aunties. The Grandmas had a big discussion about who was the most Grandma-ish. My Grandma won with 9 Grandchildren and 2 Great-Grandchildren. And now I have to stop before I write the word 'Grand' again.


And Skittle? Well he wore his little Roo suit in keeping with the occasion and mostly slept right through it snuggled up in the sling.


Monday, 16 April 2012

the shame

It's happening.

I'm falling in love.

I'm bonding.

He's starting to feel like mine.


I'm so ashamed that it's taken time. Any length of time seems unatural. I don't think I could ever say it out loud or admit it to anyone. You're supposed to get that rush of love and giddy emotion when you see your baby for the first time. Trouble is most people see their baby for the first time as they're coming into the world. I missed out on that. I went into a room with 6 incubators and had to be told which one contained my baby. I had a terrible fear of them moving the babies round while I wasn't there and then not being able to recognise my own baby. Oh the shame.

Don't get me wrong. I loved him from the word go. Not everyday am I all gooey, weak at the knees and gushy-in-love with my husband, but everyday I love him, with all my heart and every piece of me. Same with skittle, I loved him intensely before I had even met him, but in these last few days we have had at home alone together, I've started to finally feel like a muma.


Devastatingly I can't remember the first time I saw him. I am absolutely heartbroken that this is the case. I have no memory of seeing him ventilated from the left hand side of the incubator, yet there is a photo of me with him. My first memory is of him on cpap looking in from the right hand side of the box. I can't describe how guilty I feel for being unable to recall our first encounter. 

What kind of a mother can't remember the first time she saw her child. 

It's horrendous. I will surely always feel wretched about it, always mourn the loss of that memory.



But right now, I have my gorgeous boy who I love so much, peacefully sprawled out across my tummy, his hand placed up under my chin, mouth wide open and sweet little sleepy breaths landing on my cheek.

 Nothing could be more wonderful, I just wish I could have had the chance to feel this way the moment he entered the world. I feel like a terrible person because of arriving at this place so late. No one else would understand and if I told anyone they'd judge me harshly I'm sure. I don't even know if writing it down helps it to make sense; I have always loved him the way I do today, it's just that today it *feels* better.


He's mine. I'm his. I love him.

Thursday, 12 April 2012

#inpremmumagony

When Skittle was in NICU I barely went on facebook or looked at my texts, I just didn't have the brain space and I felt guilty even looking at my phone for fear I wasn't 100% focussed on him at all times. Even when we were at home in the evening all I would permit myself to do would be to flick through photos of him, eat, sleep and express. If I did anything else I felt like even less of a mother for allowing myself to be distracted while my baby fought for his life.


One night though, one hideous, lonely, broken night, the words of the aerosmith song "don't wanna miss a thing" flashed through my mind and it summed up exactly how I felt. I know that nobody could ever fully understand what it's like to have a premature baby unless they've had one, but the lyrics of this song seemed like a window into how I was feeling. And for some reason I wanted people to just consider how agonising it was, so I updated my status.

A few days later the song played on the radio in SCBU and I had to get the dreaded breastfeeding screens out and hide behind it sobbing. What a song to play on a ward like that.



My favourite blogger is an American lady called Kelle. She is a fab photographer and writes really honestly. Really honestly. She's famous for her birth story and she's just written a book, which I'm yet to order, but upon being interviewed about it she said this.


Kelle Hampton: I feel emotions very intensely. Expressing them is another story. I think we're all conditioned to mask certain emotions because we think they won't be accepted or they're "too much." Motherhood definitely compelled me to express emotions more freely. The depth of love, the fear of losing, the need to protect, the unearthly joy -- it was too much for me to contain. That's why I started writing more. And writing something I was thinking seemed more acceptable than saying it out loud. Then with Nella's birth, there were these contrasting emotions that were so difficult to deal with -- grief, fear, sadness, shame. But once I expressed them through writing and realized other women related to them, it gave me the freedom to express myself in a way I had never done before. 


It really resounded with me. I am scared to talk about how I feel since Skittle was born for fear of people thinking it's "too much" or over the top or unecessary or I should keep my feelings to myself. I also am having a hard time just talking about the experience, so I'm writing.


I wrote in hospital, I wrote in the dark of night, I wrote next to his cot, I wrote to free some brain space. I'm writing because I don't want to forget, I need to process and it's easier than talking. Hey I've even had to write notes to hubby and tell him to read my blog posts because I just can't get the words out.




Not many people commented on my status update. I think it was too much. People don't know what to say when others are experiencing pain do they. I think I'm the same. So many friends didn't text or get in touch or have stopped contacting us now. It's making it much harder for me to think of heading back into the real world, but the longer I stay inside I'm pretty sure the harder it will be.


I could stay awake just to hear you breathing
Watch you smile while you are sleeping
While you're far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Where every moment spent with you is a moment I treasure

Don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing

Lying close to you feeling your heart beating
And I'm wondering what you're dreaming
Wondering if it's me you're seeing
Then I kiss your eyes
And thank God we're together
I just want to stay with you in this moment forever
Forever and ever

I don't want to miss one smile
I don't want to miss one kiss
I just want to be with you
Right here with you, just like this
I just want to hold you close
Feel your heart so close to mine
And just stay here in this moment
For all the rest of time Yeah yeah yeah

Don't want to close my eyes
I don't want to fall asleep
And I don't want to miss a thing.



-Aerosmith, I don't want to miss a thing


Monday, 9 April 2012

breast is best

I was chatting to my amazing friend Becci about breastfeeding today and realised I really wanted to record our feeding journey. 

I knew that breastfeeding was the best thing for babies. I once thought, rather ridiculously, it was really easy to do and that both mother and baby could immediately work in partnership to provide regular meals for little one, until I watched a really good BBC documentary a few years ago on the subject and realised I was very wrong. 

When I came out of ITU and onto Labour Ward I was encouraged to try hand expressing and get some colostrum into a syringe for Skittle. I honestly couldn't believe how small the syringe was! When the nurse handed it to me I just thought surely I'm going to need a bigger one than that. How wrong I was. 

I sat squeezing and massaging for about 40 minutes and that tiny 0.22ml was the product of my hard work. That night they brought me the express pump and I sat there, sky high on morphine, with the thing attached to my boobs doing nothing but sucking air.  It was like that for 11 whole days.



Before Skittle arrived I was pretty laid back about the whole breastfeeding situation. I knew not everyone could do it and I was ok with that. I knew it took 3 or 4 days to start and I was ok with that. I knew I wasn't going to breastfeed exclusively, I wanted hubby to be able to do some bottle feeds so that I could have a break and he could feel involved. I was pretty much happy with whatever scenario we ended up with as long as our new baby got fed. Well that was before he arrived. Then everything changed.

Suddenly expressing milk felt like the only thing vaguely motherish available for me to try and I was desperate to provide. I agonised over those tiny syringes for days. I was determined that he would have my milk. Initially Skittle seemed to be having such tiny amounts of breast milk in addition to the drip that I was fairly sure I could coax out enough milk to keep him going. But then all of a sudden they seemed to be increasing his feeds at a rate of knots and they asked hubby to sign a consent form for donor milk. At the time I was bitterly disappointed and blamed myself for being unable to provide for him. Unable to do the one mothery thing possible. Unable to do anything for him, good grief did I beat myself up over that. But now I'm so grateful to those ladies who donated that milk and made it easier for him to digest his food for those days prior to my milk being enough.

Then when I did get some milk in I had to go for a special type of scan. I can't remember exactly what it was called. But I had to drink this awful stuff and go into a machine and then wear a wrist band saying 'radioactive' for 24 hours. It was awful. Awful for a few reasons. Most dreadfully because it meant I wasn't allowed to see Skittle for 14 hours. I also couldn't hold him for 24 hours. AND any milk I did manage to eke out had to be thrown away. Thrown away! I couldn't believe it. Bad day. Bad, bad day.


This was the first time I did a feed, I must say I felt entirely useless. I was initially excited at the prospect but it quickly passed. Holding a syringe while the milk drained through a tube. I don't know why I found it so sad, you would have thought I'd have just been happy to participate but for some reason I was just so upset that I was feeding my baby but it felt like a medical procedure.


When I graduated from syringe filling to express pump and finally started to get a little trickle of milk landing in the bottle I proudly took it down to the NNU and placed it on the nurses trolley only to watch her spill it. She dropped it and it quickly poured out and onto the work surface. Oh my goodness how I didn't just melt into a ball of tears I don't know. I did shed a discreet tear though. I was gutted. But also keen not to make the nurse feel bad, poor thing it was only an accident and she seemed like she was having a bad day and I didn't want to make it worse for her.


On the 12th day post delivery my milk finally came in! And Skittle was nil-by-mouth. They were worried about NEC as he had a distended tummy and wasn't tolerating his feeds. Thankfully it wasn't NEC and he didn't need surgery but he did have sepsis, so it was still life threatening and it was a while before they could build his feeds up again. In that time my milk was stock piling in the NICU freezer! I expressed loads but oh boy did I hate it. Argh I hated expressing. I hated getting up in the middle of the night to express it was a bitter reminder that my baby wasn't there. I hated the noise, the feeling, the look, the sterilizing, everything expressing I hated. And then when I had to give back my hospital grade express machine I used a shop bought one, which was actually really good, but compared to the green machine it was like a nipple massager not an expresser. Anyway, I've started ranting. Everyday the nurse would take all my bottles of the stuff and put it in my box for when Skittle was stronger.


During his 3rd week in NICU he started really sucking on his OG tube so I asked to start trying him on the breast but I was told I had to wait until he was 34 weeks gestation. So on the morning he turned 34 weeks I started trying him latching on.


Sometimes he managed. Sometimes he didn't. It was so very stressful. Hospitals are not the place to learn how to breastfeed. The environment is all wrong. Those dreadful screens are a faff, the room is noisy, people interrupt, it's too hot, it's uncomfortable and all in all it's a nightmare.

We successfully accomplished 3 full feeds at random moments in SCBU but decided to come home with the NG tube in rather than waiting to establish full breastfeeding.  I tried 3 times a day for 19 days. And on day 17 I very, very, very nearly gave up. But my Mum encouraged me not to and when the community neonatal nurse called she told me not to and in my tired and stressed out state I didn't have the energy to argue.


I have to say I love breastfeeding now. Not in a 'lets-all-do-it-in-public-and-make-other-people-feel-bad' kind of way, hey I even go in the other room at home when we have visitors, but just for me and Skittle we tried and tried and tried again and we eventually got there and I'm proud of us. I know loads of other prem mum's don't have the same story and for lots it's just not possible and for a while I didn't think it would happen for us either and if it hadn't, I know Skittle would have been absolutely fine for it, after everything prem babies and their mum's have been through just having each other is the main thing, not to worry about feeding methods.

Plus donor milk in most NNUs mean that premmies do get breast milk in those early days when it's important for their digestive systems. Over on the amazing notevenabagofsugar blog there's been a great post about this subject recently. I would love to donate all my let over expressed milk but unfortunately due to a hefty blood transfusion I don't meet the criteria. 


For now my milk drawer with over 80 bottles of milk will just have to remain the visitor tourist attraction.

Thursday, 5 April 2012

praying for you

was all I could do.

Throughout Skittle's time in NICU I was desperately, painfully aware that I couldn't be there for him. Hubby could be with him a bit more than me, whenever he came to the ward to visit me I'd quickly send him down to the neonatal unit, but still he couldn't be with him all day. 




And so I prayed. Not always with words, often I couldn't manage any. I'd just gesture to God, I've got nothing, take these fragile breaths I'm breathing as heartfelt cries for you to intervene.




During Skittle's hospital stay I was reminded of Psalm 23 v 1 "The LORD is my shepherd, I lack nothing." As far as I was concerned Skittle was lacking everything but still I occasionally found it within me to trust that God was doing more than I could see or understand. 


One night I wrote:


"I'm terrified of losing you. I wake up literally paralysed with fear having had the most disturbing nightmares. I'm so scared of so much at the moment, I'm scared I'm not showing you enough love, I'm scared you'll forget my voice, I'm scared you won't feel comforted or safe or protected. Baby I just want to be there for you, to hold you, comfort you and cradle you in my arms and let you know that you're so wanted and so cared for and so loved. I wish I could sleep by your side and watch your every move. Instead, I fervently pray that God will be all you need and fill in all the spaces I cannot fulfil and that you won't be damaged by this. Love you with all I've got sweet baby boy."



This is still my fear. And still my prayer. It's just now that he's home I do get to hold him, comfort him and cradle him in my arms. And for that, I am oh so thankful.

Sunday, 1 April 2012

we ventured outside

And it was lovely. Just the 3 of us, a rug, a picnic, some fresh air and a lot of sun. It went well, it was relaxing, I was quite calm.


Then we tried walking to boots. It was not so fine, I was stressed and most definitely not calm. Skittle was in the pram and we walked down the road. I was either scanning, frantically looking around me for signs of danger. Or staring at the pavement. Just in case my eyes met someone else's.

There were a number of fears that were trying to keep me at home. Firstly, I didn't want to see anybody we knew. I don't want to talk about Skittle's entry into the world which people will no doubt pry into, even if it is just because they care, it's probably just because their nosey. Secondly, I want to stay at home because it's easier and requires less physical and emotional energy. Thirdly, I don't want to see anyone who's pregnant, it reminds me of my failings. And finally, leaving the flat opens up a world of dangerous freak scenarios that run through my head as we're walking along.


As we were standing on the island between the 2 sets of traffic lights waiting for the green man with the cars driving passed us scarily close I was worried that a lorry would mount the curb and take out the pram and I was stood there frantically trying to work out how I could get my bosy to shield Skittle and keep him alive. 

I'm crazy lady. I know.



Our trip to boots was slightly more successful than my Sainsbury's debut a few weeks ago. We were on our way to hospital and hubby ran in to get a few bits but I had the gift voucher in my pocket so ventured from the safety of the car up the stairs to give it to him. No sooner had I stepped inside the shop it felt like Sainsbury's was trying to swallow me, I hastily surveyed the area for hubby, thrust the voucher into his hand and turned to make my swift exit before the shop trapped me inside it and took my air. It felt like I was in a cartoon running to get out but my feet were stuck to the spot. At least in boots I just felt a bit panicky and my eyes went blurry and my ears felt blocked.

I'm in no hurry to go out again.



dead spiders

2 days after Skittle was born I thought my head, or my heart, might explode with the intensity of feelings I had inside. So I asked my dear mum to buy me a selection of things you'd want in hospital as well as...a notebook and pen. And then my incredible friend Becci bought me one too, she's so thoughtful.

I thought at least if I could write those feelings down I could maybe stop going over things again and again in my head. I didn't date the pages or use paragraphs, which I think speaks for itself of the state I was in. Only on the 27th February did I start writing the date. My handwriting is entirely inconsistent as I drifted in and out of lucidity in-between presses on the morphine drip. At times  I fell asleep with the pen still pressed against the paper and there are little splats on the page. Incomprehensible squiggles. Like dead spiders. Reading the pages of words makes me well up each time I re-read them. 

But I'm glad I've got these dead spiders. So much of those early days, especially the 4/5th of February are lost in my memory, it's actually quite reassuring to know I was thinking something and that it might help me to remember something important. 


The first entry goes like this...

"My sweet darling boy, what on earth can I say, where do I begin, what words could even begin to describe how I feel? I'm laying down the corridor from you, painfully close and agonisingly far. There's a mum and her baby in the cubicle next to me and hearing them cry is agony. I'd do anything to have you with me right now, to hold you, stroke you, touch you, anything to reassure that I'm close and I love you. I'm longing to have your skin on my skin and to feel the tiny little warmth of your breath on me and to hear your gorgeous snuffly, shuffly sounds. I want to stroke your hair, right now you still have baby fluff which is gorgeous but you probably won't have that by the time you're home. I don't know how long you're going to be here for, they'll definitely send me home before you which really doesn't seem fair. All I want is for you to be well and for me and daddy to bring you home. I love you my little darling, I would love to still be feeling you kick my ribs and wobble about inside me. I'm so sorry you're out 10 weeks earlier than you should be. For every single one of them I'm thankful that you're you, created in God's image. I love you baby."

I don't remember writing a word of that. I can't even remember where I was. Which ward I was in. It must have been Labour Ward. Why I was in there when I never went into Labour I don't know.

Horrid place to be put if you ask me, dreadful staff forcing me to get up and move when I was in agony, taking away pain relief when all I wanted was to be in a small enough amount of pain to sit at the side of the incubator. It's not like I wanted to be taking pain relief and lying down all day. I wanted to be anywhere but in there without my baby. The pain specialist came. Gosh I was so cross with that horrible little man. I wish I knew his name, I'd write such a nasty letter. I'm still so angry. Why couldn't he just let me have the pain relief?

As with all operations, the pain does go, usually initially really quickly too, and lo and behold 2 days later, after they'd forced me to walk to the loo a mile away and taken away the pain relief, the pain did get far more manageable why couldn't he have let me have pain relief up until that point and then I could have seen Skittle for longer in those early days rather than being in so much pain I thought I would pass out on the chair.

Why did I feel like none of them understood? Just some sensitivity would have been appreciated. They didn't have to be understanding just kind. Those nurses clearly thought I was scum and should have been walking to NICU myself. Not a proper woman who had been in Labour and had a right to be on the ward. Dreaded looking at their faces when I asked for a chair to be taken down to see Skittle. Dreaded them asking whether or not I'd "mobilised". Dreaded hearing what they'd say when I shamefully asked for more pain relief, or indeed whether or not I was due any more pain relief if it wasn't too much bother.

Frances was nice, so was Zeta. The rest of them, not so much.