This is written from memory on Saturday 14th August, as I can now write without tears. The caveat to these memoires – time often adjusts the realities of events, so this is as I recall them from this distance.
I cannot really fault the medical care post-operatively that I received whilst in the first hospital, although having read websites and information since I got home, I was not given much advice about avoiding DVTs other than blood thinning injections and the need to wear support stockings… I also had to request the presence of and guide the physios in my need to get moving safely.
As for the care and nurture of me as a first time mother – well, I struggle with feelings of maternal inadequacy and failure, even to this day…
Saturday 10th July – a day in bed…
I am moved from the High Dependency Unit to a room on the main ward, along corridors and through doors which seem like a maze to me. My baby is in my arms. We get an admiring look from an expectant dad, and I say, “He’s worth every moment” with a sense of foggy amazement.
The room we’re in is too warm for my liking, but of course the window will only open a small amount for the security of the baby. I spend the whole of Saturday in bed, wincing with every move and wondering when I can have the canular in my right wrist taken out. Samuel is in a cot on wheels to the left of my bed, and I keep staring at him. I can hardly believe he’s real, he’s here, and he’s no longer the wriggly bump in my tummy. Now he’s out, he’s public, he’s to be shared. Other people now ‘own’ him. He’s no longer just mine.
We’ve had the all-important skin-to-skin contact in the HDU – he was cold at birth, so having spent some time under a heat lamp, then swaddled to within an inch of being fossilised, he is stuffed down my theatre gown with only his nappy on to gain from my body heat and help us to bond. He is so tiny and vulnerable, laid here on my chest, thin and wrinkly, needing me to keep him warm. It is my first realisation that he needs me for survival – the first realisation of many more to come.
We have our first visitors – Aunty Lucy and Uncle Rob! Samuel is about 12 hours old, and cuddles are a must. Lucy and Rob came up for ‘the last weekend before the baby arrives’ and have been brilliant in their support as events unfolded and took us all by surprise. It is great to have them come and visit us in the hospital, and hard to see them leave as they have to go home again today.
Samuel doesn’t know about latching on, so the precious first feeds are a struggle. Eventually we have to hand express the feeds and give them to him in other ways – the HDU nurse uses a syringe, then a pipette, the ward staff begin with the pipette and move onto tiny sippy-cups as the amounts increase from a couple of millilitres to 5ml. It seems like Samuel needs feeding every hour. And so, with an increasingly stressful regularity, we go through the trauma of trying to breastfeed Samuel, with the inevitable moment where the midwife/health care assistant/breastfeeding support worker/next random person who walks into the room says, “shall we express this feed and try again next time?”, to which I – trying to remain calm for everyone’s sake – say, “yes, I think so. I do think he’s getting the hang of it, and so am I…” I am desperate to get this right, to be a proper mother. I’ve read all the information given to me by the local midwife which stresses the importance of breast milk and exclusive breastfeeding for the first 6 months of Samuel’s life. I know the health benefits for us both, and the implication in all the ‘propaganda’ that if I don’t succeed in this then I am letting us both down. I’ve studied the pictures showing me how to get Samuel to latch on and feed properly. I even paid attention and didn’t laugh when the midwife produced knitted breasts at the antenatal class on how to breast feed (no, seriously…). The difficulty is, Samuel didn’t read the information, wasn’t paying attention at the antenatal classes, and seems to have a mind of his own on this matter… And so all through the day, and all through the night, the pantomime continues, and to my eyes Samuel looks permanently hungry. Neither of us sleep very well, both of us cry a lot… I spend many hours singing to him and holding him.
Sunday 11th July – into the wheelchair, and watch the World Cup Final…
Today 2 goals are achieved – the catheter comes out (joy) and I transfer from my bed to my wheelchair! It may be uncomfortable, but I am now mobile and more independent.
We have another day where a succession of people will walk through the door wanting to prod either me, or Samuel, or both of us. Naturally, everyone also has an opinion as to why Samuel isn’t feeding properly yet. The most well-intentioned but damning phrase I keep hearing? “Your technique is really good, you’re doing nothing wrong.” Good, excellent, but then why is my baby losing weight, crying so much and not sleeping for longer than 50-60 minutes at any one time? Most of my meals are eaten and hour after I get them brought to me, as I try again to successfully breastfeed, and yet again have to express as Samuel cries with hunger and exhaustion. I want to shout out – ‘can’t I just express and bottle feed him, surely that is what this baby needs’. But I’m a first time mother and I don’t know what is right. I continue to follow the direction of the multitude of health care professionals who come in and out of my room at all hours.
Today’s visitors – the grandparents! All four arrive around 2.15pm and stay til 3pm with cuddles and photographs all around. It is wonderful to see them, and to share their little grandson with them. There are some tears and many smiles as he works his charm on them. For a moment I can feel proud of what I have achieved. I am a mother, and this is my son. I am doing well.
I cannot face another night like last night alone, so I ask Chris to stay and the staff find him a mattress and sheets so that he can sleep on the floor at the foot of the bed. He will help me during the night if I need to get out of bed for the bathroom, and to pass Samuel to me when he cries for a feed; more importantly, to be a support when the waves of inadequacy sweep over me in the wee small hours. Well, that is the plan. Chris does indeed sleep at the foot of the bed – he sleeps soundly through the 1st 3 unsuccessful feeds and is only awoken during the 4th by the midwife turning on the room light at 4am having had Samuel screaming so loudly I feared for the safety of the windows, and me throwing a soft toy at him (Chris) to wake him up (it landed on his face, bounced off the wall and hit him again, and he didn’t stir until he turned over in his sleep and hit his elbow on the wall…) It is ‘a dark night of the soul’. I honestly wonder how I can make it stop, how I can bring my failure to an end, how I can prevent Samuel from experiencing any more distress. Desperate thoughts run through my head as to how I can end this situation. I cannot entertain any of them. So I call for the midwife again, and we run through the now all-too-familiar script: Samuel is needing more feeds, and I am finding hand expressing harder to do. He still cries after each attempt at breastfeeding, even though people keep saying that he’s getting the hang of it – no he isn’t people. I know what it should feel like, and I can assure you that he isn’t feeding. Another night of singing to him, telling him I love him, crying and praying.
Monday 12th July – pyjamas on, hair washed, physios located, on my own two feet…
The canular in my wrist comes out, and the dressing over my stitches comes off. Bliss! I wash my hair over the bath – carefully, as the abdomen is tender still – and put on soft pyjamas. I am beginning to feel more human again.
The physios bring me a zimmer frame so that I can get out of the chair and up on my feet – they have no experience of Cerebral Palsy and I have to explain the condition from scratch. I stand carefully at the frame, then set off cautiously for a stroll to the door, and out of the protection of my room into the corridor. It feels great to be on the move, albeit with 2 nervous physios following me with my wheelchair 2 inches behind my backside in case I fall or get too tired. They advise me not to do this again without someone to follow with the chair, then suggest that I try using my crutches… I decline, saying that crutches would be much harder and I’d be more likely to fall at this stage. Another lesson in how CP affects the centre of gravity and co-ordination… They promise to come back tomorrow to check on my progress. I spend the rest of the day walking around the room using the frame – with no-one following me around in case I fall!
I now have a new toy – a machine to express breastmilk. Great. It will save my hand from aching so much, and speed up the process no end. Samuel now needs 20-30ml per feed and is hungry every 2 hours, so I need all the help I can get. We have tried every position and technique known to mankind in an attempt to get breastfeeding right, to no avail. I have had 20 different women handling both Samuel and me in an attempt to work out what he is doing wrong or what I am doing wrong. There is no privacy or dignity in this process, and no matter what the ‘experts’ suggest or try, nothing makes the slightest difference to Samuel, who latches half heartedly, sucks twice, realises how comforting it is to be in that position, and falls asleep! He is still losing weight, and is still unhappy and hungry. We still go through the performance of trying him on the breast, but I wish someone would allow me to call time on this rigmarole, and get on with expressing to bottle feed as his method of getting nourished.
My hope to be moved down to a local birth centre today is scuppered on 2 counts – they currently have no beds free (we’ll try again tomorrow morning), and Samuel has lost 9.9% of his birth weight. If that goes to 10% neither of us are allowed to leave the hospital. Please Sam, don’t lose any more before we hear that the birth centre has a bed for us…
The staff ask if Chris will be staying again tonight – the answer is no! He’s more use to us at home with a good night’s sleep!
Tuesday 13th July – falling apart, discovering identity, and escape…
It’s amazing how just going to the toilet can end in floods of tears… After another night of wondering how to make my baby happy, and having him finally go to sleep around 10.30am I decide to go to the toilet – he seems content, and Chris is due to arrive soon so a quick trip to the bathroom shouldn’t be a problem. Once in there, I hear Samuel start to cry – and it immediately builds up into a full-blown scream. I remind myself that he’s clean, dry, winded and ‘full’ as I’ve recently expressed and fed him, so I don’t need to rush out there, I can take my time. Calmly, I finish what I’m doing, and wheel myself back out to his cot, carefully transfer myself back onto the bed, pick him up (little red face thoroughly screwed up and big ear-splitting shrieks coming out of this tiny person) and hold his tightly swaddled body up to my left shoulder. Instantly, he stops crying and sleeps contentedly. He knows he is safe, he knows his mum is holding him. He knows there is no need to be distressed. Far from being calm, it’s now my turn to be distressed – this tiny baby needs me for everything, I am the centre of his existence, and I feel now that I let him down when he needed me. Quite irrationally, I begin to apologise to him for leaving him, and letting him cry. I sit on the edge of the bed, holding him, rocking, crying, and repeating “I’m so sorry Sam. I’m so sorry.”
15 minutes later it occurs to me that I need to get a grip and stop this – Chris is due any minute, and if he or any of the staff walk in whilst I’m behaving like this they’ll think something terrible has happened… when in fact all I did was go to the toilet and let Sam cry for 2 minutes! The tears are almost gone when Chris arrives 5 minutes later, only to start again as I tell him about the night and the morning. As I hold Samuel, so Chris holds me, and we pray in the knowledge that God holds us all.
Having prised Samuel out of my grip, Chris sends me off to have a shower and get dressed. Reluctantly I leave both my men and follow orders. In the shower I begin to work out who I am. As I emerge from the steam, I say to Chris, “for 9 months I have been pregnant Katie, on Friday I suddenly became Mummy, now I feel as though I am both together – Katie is back, and Mummy is real, and the two together make for the best combination for Samuel”. I will need to reflect on this question of identity, and the sudden enforced change with motherhood, in the days and weeks to come [more on that in another part of the diary…]
Another succession of health care professionals (including the physios to see whether they can have their frame back yet – no!) come through the door during the morning: 3 paediatricians variously wonder if Sam should have his hips x-rayed at 6-8 weeks as they are very mobile (he was born Breech, so froggy hips are normal in that situation aren’t they?); midwives who weigh him and tut at his 9.9% weight loss (but it hasn’t hit 10% yet); a member of the Anaesthetics team comes by to apologise for the fact I was never refered to their clinic to discuss options and implications pre-admission (we had asked for this at 20 weeks!), and the fact that I’d had to make big decisions on the table in theatre.
Finally the news I was desperate for – the birth centre have a bed for us. We can leave the hospital. This is life-saving news – if the centre had still been full, we would have to stay at the hospital another night (because of Sam’s weight being so low) and that would be the end of us both…
With all the paperwork, admin, and further ‘helpful’ advice on breastfeeding, it takes until 5pm to leave the hospital. I have mixed feelings – I am sad to leave behind the microcosm of the little room we have called home for the last 4 days, the cocoon it has provided from the outside world, and the framework or people and routine that has been my scaffolding. However, it also represents guilt and failure – my perception that I am not a proper mother to Samuel because of the disastrous attempts to breastfeed him.
We leave the hospital – Chris, Samuel and I – a little family. Nervous and excited, my biggest concern is being a passenger in the backseat of my own car as Chris drives us to the birth centre 40 minutes away! And that in itself is worth a whole new chapter….
