Photographing and scrapbooking your NICU experience

I love Talia’s NICU photos, looking back on them now. I wish I had more of them, and I really wish I had some video. I don’t think I realised at the time how important they would become, because when I was spending so much of every day in the nursery, I felt as though every detail would be burned into my brain forever. Unfortunately, you do start to forget the little details so every photos is precious – especially the size comparison photos, and the few of me holding Talia. Sadly I lost a lot of my hospital photos last year due to a computer failure – so be sure to create a back up of any photos you take.

I know there are mums who who can hardly bear to look at their hospital photos, showing their baby looking so small and struggling to hold on to life – but it is better to have the photos and choose not to look at them, than not to have them at all. One day your child may also want to know more about how their life started and how amazingly far they have come.

The nurses at my hospital were quite good at giving me little items to keep – things like hospital bands, a tiny blood pressure cuff, monitor leads, the little paper tape they use to measure head circumference and so on. They also made me a card for Mothers Day with Talia’s footprints in it, and so forth. All these precious little souvenirs are in a special memory box which I dip into from time to time.

I’m not really a scrapbooker, although I’ve done a bit of digital scrapbooking. However I know a lot of people like to create baby pages, and if you want something special, here is a site which offers stickers and other scrapbooking stuff specifically for premature babies: http://www.mykidsinspiration.com/shop/index.php The only drawback is that they call premmies “preemies” in the US.

These are a couple of my digital scrapbooking pages, they are part of a photo book I made of Talia’s first year. (They don’t actually use anythings specifically for prems, other than my actual photos.)

You can see scrapbooking done by other premmie mums on the L’il Aussie Prems forum here.

Mothers Day

Last year was my first Mothers Day.
It felt much like any other day in the weeks before or after it – trekking in to the hospital, reading the chart to see how much Talia weighed and how much milk she’d been fed, watching the nurses take care of my baby. It was hard sometimes to even feel that she was really mine, when all I could do was change the occasional nappy, express my milk via a machine and hope for a cuddle once a day or every second day. I worried about her, I shed plenty of tears.
Taking her home and leading a normal life seemed a distant dream.

Mothers Day 2007

This year it is the NICU which is a dream, dimmed by time but not forgotten.
Pictures of premature babies on the news bring tears to my eyes but for us, so much has taken place, so much has changed in a year. My beautiful daughter finally allowed to go home. Breastfeeding, settling, weigh-ins. First smiles, tummy time, growing out of clothes, starting solids. Sitting, rolling, turning the pages of a book. Our first birthday celebrations.

Another Mothers’ Day.
We shared it with my mothers’ group, holding a joint first birthday party for our babies, born between March 20 (Talia’s birthday) and June 22 (the day Talia left hospital) last year. I made party food, sewed a gift and helped decorate the venue. Yes I am a real mum – I can walk the walk (while pushing a pram) and talk the talk and have the t-shirt to prove it (almost certainly with baby food smeared onto it). I still worry and I still shed tears from time to time, and maybe I always will. It seems to be part and parcel of being a mother.

Mothers Day 2008

The great spoon strike of April ‘08

Since she figured out solids at the end of last year, Talia has been fantastic, eating all sorts of homecooked meat and veg. She had started to catch up with her weight and all was going well… until now.

A week or maybe a little longer ago, she started objecting to receiving food on a spoon, pushing it away with her hands and turning her head to the side. With a bit of ingenuity (”say aaah Talia!”) I could get a spoonful in, and after carefully digesting this first mouthful with all the seriousness of a wine connoisseur judging expensive shiraz (up to but not including the spitting out stage), she would then allow me to feed her the rest of the meal.

I thought I had it all under control until the beginning of this week, when she decided that not even the first spoonful would be considered acceptable, under any circumstances. It has been very difficult to deal with, as I don’t want mealtimes to be a fight, but I can’t let her go without a healthy diet. It’s not that she won’t eat – just that she won’t allow herself to be fed. It wouldn’t matter so much if she was older and able to use a spoon, but at the moment she will only accept a limited range of finger foods – and they are subject to change without warning. Savoury pikelets were a hit on Tuesday but thrown out of the high chair on Wednesday. Raisin toast has come back into favour, as have avocado finger sandwiches, but baked ricotta is now out and her acceptance of random veges appears to depend entirely on her mood, the phase of the moon and whether or not the wind is blowing from the west.

This is the sort of point where you realise that being a mother is a full time job and then some.

Slow progress is better than none

Physiotherapy is one of those emotionally fraught issues for a parent. You know you are doing the right thing by giving your child extra help to reach their physical milestones, but at the same time you still feel fragile and vulnerable because your baby isn’t making progress like everyone else.
When it was first suggested Talia have physio I was ready to burst into tears, even though I knew she was lagging behind her peers. When she made early progress and sat by herself, I was very proud, and assumed we were over that hurdle and wouldn’t need to go back. Unfortunately a few months later the original prognosis came back to haunt us – her development was very patchy and would only lead to frustration as she matured mentally but was trapped physically. She could sit all day like a buddha, surrounded by toys, but nothing on earth would persuade her move from where she sat. If a toy was out of reach, so be it. Shortly after her birthday four weeks ago we resumed one-to-one physio sessions at the hospital to help Talia develop the skills she needs to be able to reach, turn, crawl, stand and eventually walk.

Two sessions of physio (plus plenty of practice at home) later, Talia has steadily improved her abilities, and now does things other babies (and their parents) take for granted, but which were entirely new for her: playing with a toy using both hands on the same side of her body; turning to the side over her knees and raising her bottom off the ground; moving her body so she is on “all fours” (although she usually slips down onto her tummy); turning and reaching and then bringing herself back to a sitting position; pulling herself up to standing while holding my hands. With help she can put weight on her knees and will occasionally start rocking in a way which some babies do before starting to crawl.

Today I went proudly to the monthly group physio session, knowing that Talia would be surrounded by ex-24 weekers who are crawling like Olympic champions but glad at least that she no longer spends these sessions just lying on a mat crying, and hopeful that she might have crept up a little on the development chart. (Yes they have percentile charts for development too, not just height, weight and head circumference!)

The physiotherapist who saw us was very pleased with her progress – but regretfully showed me that Talia has in fact slipped lower on her development chart due to the very erratic nature of her progress. I am making up an example here, but apparently most babies develop skill A (like rolling) before skill B (like sitting) before skill C (like pulling themselves up on furniture) before skill D (like standing confidently with support). Talia has decided to do B before A, and D without C. So from the physiotherapist’s perspective, she still has a long way to go. In contrast, my mother has been overseas since we started the extra sessions and will no doubt be amazed to see how far Talia has come in 5 weeks.

The hospital provides physiotherapy only until their NICU graduates are 12 months corrected, which in our case is only 2 months away. So it will be interesting to see how much more progress we can make in the next 8 weeks, before we are out on our own.

Good to the last drop

The bottom drawer of our freezer (we have an “upside-down” fridge) belongs to Talia. It’s full of plastic tubs containing ice-cube-sized portions of stewed fruit, mashed veg, pulverised chicken, flakes of fish in cheese sauce etc. Wedged in the middle of this oyster of solids was a little pearl – the last remaining bottle of my frozen expressed breast milk (EBM).

I’ve rambled at length about the ups and downs of milk production. It wasn’t easy, but it was worth it. I wanted to do more, but now I’m happy that I did as much as I could. If I had to do it all over again, I would. So what’s the story with this bottle of EBM? Talia stopped breastfeeding exclusively last October, and ceased completely at the end of January. It’s now the end of March. This bottle of liquid gold was dated 21/6/07 – the day before Talia came home from hospital. This bottle of milk has reigned, happy and glorious, over the bottom drawer of the freezer for NINE months, as one by one all the other bottles (older) and baggies (younger) of EBM were defrosted and used up. (Don’t worry, my freezer is cold enough that it was safe to keep it longer than the usually recommended three months). This bottle was a testament to my hours of expressing but also a life-line which I had clung to for months in case of emergency, but which was no longer needed now that Talia is healthy and happy with formula and solids.

So last Thursday, a week after Talia’s first birthday, I liberated this vintage bottle from its cryogenic home and defrosted it. On Saturday, Talia’s bottles were half formula and half EBM, the final instalment of my first gift to her. It doesn’t usually happen, but she completely finished every bottle. That night we both went to sleep satisfied.

One year later – remembering Talia’s birth

I’ve been feeling anxious and emotional all day, and as the hours went by and it came closer to the anniversary of Talia’s birth the feeling just became stronger until here I am now, mid-evening, sitting on the sofa with a box of tissues and wiping away the tears.

This time last year I was in a shared ward with other expectant mothers. I’d had an ultrasound in the late afternoon which showed my baby’s feet clearly pressing down on my bulging, partly dilated cervix. As a result I’d been told to go immediately back to bed, keep my feet up, and not get up unless I needed to use the bathroom. My hopes of going home in a day or two were dashed, and I anticipated a long, boring period of bedrest waiting for “Tic-Tac” to grow and hopefully arrive close to her due date.

My lower abdomen was sore, and I mentioned it to every nurse who came to check on me, but each time they felt me they said it was still soft and it was nothing to worry about. I remember I was in tears that evening too, because I’d asked if they would call my mother if anything happened (like me going into labour) and they said they couldn’t guarantee it. I felt lonely and miserable. Around 11pm I felt I was unlikely to sleep with the pain in my abdomen and rang to ask for some panadol. The nurse who arrived to see what I wanted felt my stomach and immediately called for someone to take me down to a labour ward. As they wheeled me out I was begging them to call my mother.

Down in the labour ward I was in a big room by myself. I met a funky young midwife named Xena and was introduced to a handsome young surgeon whose name I forget, but in chatting we discovered we had both gone on student exchange. My labour pains were intensifying and they offered me morphine. Not knowing how long I would be in labour, and being a total wimp, I accepted it. In retrospect it was the only thing I regret, because I was a zombie for the following 24 hours.

Not knowing if the nurses had called or not, I asked Xena if she would contact my mother. However no sooner had she started to leave the room than in came mum. A nurse had called and left a message when she was asleep and didn’t answer the phone quickly enough. However the number they said to call back on was a wrong number, so mum just assumed the worst and got straight into the car and drove immediately to the hospital and buzzed security to be let in. It was around midnight. I remember holding mum’s hand really, really tightly as we waited to see what would happen.

It must have been close to 2am when the surgeon decided that it was too risky to let me continue labouring. With Talia in the footling breech position, if my waters broke her body might easily slip out leaving her head stuck, and there was a real risk of umbilical cord prolapse – which could lead to brain damage or stillbirth. I don’t recall the exact sequence of events following that, but I was moved to an operating theatre. I can recall going through a series of swinging doors, like you see at the start of medical dramas on TV. I met a couple of friendly anaesthetists. One was almost a stand-up comedian, he just had one joke after another as he supervised his more junior colleague painting my back with a cold liquid before he put in the epidural. By this stage the morphine had taken effect and I was not in so much pain, but everything felt not-quite-real, as if I was watching it all happening to somebody else. Sleep deprivation may have also been to blame.

I met up with my mother again in the operating theatre. The room seemed to be full of people – two surgeons, the midwife, the anaesthetists, three people from the NICU. I remember that I could feel nothing from the chest down, but from the chest up everything was shaking uncontrollably, as if I was cold although I don’t recall being cold. I didn’t even feel quite so frightened by that stage, just numb and vaguely annoyed that I couldn’t stop my arms from wobbling like jellies. I would have liked to actually see what they were doing but perhaps it was better not to. Mum could see some of the action reflected in the big silver light over the operating table as she held my hand again. She told me about the big blood clot which was behind the placenta, and possibly the cause of my premature labour.

I had no idea how long it would take but was still surprised at how quickly everything happened. They started at 3am. Within minutes Talia was out and being bubble-wrapped by the NICU team. It took a little longer to stitch me back up again, but even so it wasn’t long. A NICU person held a pathetic wrinkly red-faced bundle near me and I reached up to brush a finger on her forehead before they whisked her away. Mum stayed with me in recovery, but I only recall recovering long enough to finally fall asleep.

When I woke up it was morning, and the morphine was like a haze. I was in a private room, and someone had brought me a polaroid picture of my baby. I remember looking at the photo and feeling empty and slightly frightened because I didn’t feel any emotional connection, no rush of love, only blankness as if I was looking at a stranger’s baby. At the same time I felt physically empty too, because Talia had always been a wriggly baby who kicked regularly and I felt barren without the movement inside me.

The rest of the day was a blur. I recall very little, other than speaking to my stunned husband on the phone from Singapore, and my mother arriving with a bunch of striking blue orchids. In the evening I agreed for Talia to take part in a clinical trial, and someone showed me how to use a breastpump.

So much has taken place since then.

Today I made a cake, blew up balloons, got ready for the big day tomorrow. My husband is in Singapore again and it all seems a bit unreal. To celebrate the last few hours of her last day of being zero, I packed a bottle (of milk for Talia) and bought some takeaway and we sat in the park in the twilight and watched the ducks and the dog-walkers together. It was incredibly peaceful and such a beautiful contrast to the same night last year.