National Premature Birth Awareness Week

November 24-30 is Austprem’s National Premature Birth Awareness Week . Their aim is to increase awareness amongst ALL pregnant women of the signs and symptoms leading to premature birth.

I knew absolutely nothing about preterm birth before Talia was born, but apparently around 8% of babies in Australia each year are born earlier than 37 weeks gestation, and these babies have a much higher risk of long term health problems than babies who reach full term. The earlier the baby, the greater the risks.

Like about half of the mothers who have premature babies, I was not in a high risk category - no previous history of premature birth, not having twins or more, no known abnormalities of my cervix or uterus. No illness during pregnancy, no high blood pressure or symptoms of pre-eclampsia.

In retrospect, it was obvious that I lost the plug from my cervix the week before Talia was born, but I didn’t realise what it was at the time. It was just mucous, and I wondered if I had a minor infection but had been unable to get an appointment to see my GP before the weekend. As I wasn’t in any pain, I decided it was OK to wait. Then the cramping started. I looked in my pregnancy book, which helpfully told me that cramping in the first trimester was probably a miscarriage, and cramping in the third trimester was probably the onset of labour. It didn’t say anything about the second trimester.

I rang KEMH on a hot Saturday afternoon and asked them if I should be worried. They asked if I had a back ache, blurred vision or nausea. I didn’t. They said it was probably nothing, but I might as well come in to be checked, just to be on the safe side. My husband was away and I was only going to sit at home and worry about things, so I grabbed my handbag and got in my car. No thought of packing an overnight bag. No idea that I would need more than 2 hours parking. No clue that my life was about to be turned upside down.

The scary thing is that if I’d lived further away, already had a child to care for or something important to attend, I might not even have bothered to go that afternoon. I might have waited until later - and it might have been too late for steroid injections. I might even have lost my baby. Fortunately I trusted my “mummy instinct” even when I knew so little about what was happening.

So here is the information in a nutshell. If you have any of the following symptoms of premature labour - call your health care provider or go to the hospital right away .

It’s much better to be safe than sorry. If you really are in labour, the sooner doctors can try to delay your labour or give you steroids to speed up your baby’s lung development, the better your baby’s chances of survival and good health.

Reading to your baby

Talia at 18 months

Doesn’t time fly? It’s hard to imagine that a year ago this gorgeous almost-toddler was almost failing to thrive, and I was struggling with post-natal depression as a result.

Now she’s a little above the 10th percentile at 9.33kg and 74cm long, and has made the move into size 0 and size 1 clothing. I pulled out her summer clothing from last year and marvelled how 000 could look so small, when at first we could hardly imagine she would ever be big enough to wear it. We’ve come through winter with only two minor colds, which is fantastic given that she left hospital with chronic lung disease.

Developmentally speaking, Talia still exhibits global delays, but they do not stop her enjoying life immensely. She is nearly walking, having taken her first few steps, but is happier crawling at the moment - including some new crab walking with her bottom in the air. She recently started baby swimming classes (known here as “synchronised splashing”) and hopefully that will help her core body strength as well as giving her confidence around water.

Her favourite activities at the moment are going on the swing in the park, reading books, playing with balls, pegs and balloons, popping bubbles, starting games of peek-a-boo and hanging out with her bath toys. She has recently grasped the concept of putting pieces into a simple jigsaw (no interlocking pieces) but doesn’t have the dexterity to complete it by herself just yet.

Eating is still patchy, with the same problems of “loved it yesterday, hate it today, don’t even bother tomorrow”, but she’s continuing to gain (and grow out of things) despite the fact that she’s almost 100% self fed on finger food and I’m no closer to getting her to eat off a spoon, regardless of whether I’m holding it or she is. On the positive side, we can feed her a little bit of whatever we are having and no longer have to rely on food organised specifically for her (although we still do to some extent), and we’ve moved from formula to cow’s milk in the last month without any problems - in fact she clearly prefers it.

She will sometimes allow us to brush her teeth but it does take quite a bit of persistence. She sleeps well overnight and has one nap in the middle of the day, usually 1-1.5 hours long. I wish she’d sleep longer during the day but no luck so far - her room is probably not dark enough.

All in all, a wonderful, easy-care baby, even if she came without a manual! We feel very fortunate, and very proud.

Happy Father’s Day

Father’s Day: the media is full of images of happy, healthy children rushing to give their much-loved if slightly hopeless father a blokey gift, but when your little one is still in hospital the stereotypes are meaningless and all you really want is to have your child come home.

What is the role of a father of a premature baby? When my daughter was born unexpectedly early, my husband missed the birth completely - no magical memories of cutting the cord for him, he wasn’t even able to hold my hand. While I found myself on early maternity leave and able to spend all day in the NICU, he was still at work - sometimes far away. It made no sense for him to take his one week of paternity leave until we brought our baby home, at which point his employer initally refused to grant him the leave because it was more than 3 months after her birth!

My husband shared all my anxieties about Talia’s health, not to mention the broken sleep as I rose twice a night to express, without the joy and reassurance of being able to hold his daughter for days on end. He visited the nursery in the quiet of the evenings when the doctors were gone and the lights were dimmed, and sang her soft songs of love below the beeping of the monitors.

Now more than a year later, he still sings her songs. He holds her tight and reads her books, sits on the floor playing with her as soon as he gets home from work, pushes her on the swing in the park and rejoices in every little milestone. He knows how lucky we are to have her, and I know how lucky she is to have him too.

Pre-Eclampsia Awareness Week

I just discovered that this week is Pre-Eclampsia Awareness Week.

I had never even heard of pre-eclampsia until a friend of mine told me it was the reason she needed to have her baby delivered 8 weeks early, four years ago. To be honest, at that time I didn’t have any idea what she had been through. Since my daughter was born I’ve met a lot more women - mostly via L’il Aussie Prems - who suffered from this very serious and sometimes life-threatening medical condition and whose babies were born prematurely as a result. In fact even two friends in my new mothers’ group who were able to have full term babies also suffered from pre-eclampsia in the late stages of their pregnancy. It’s a lot more common than I had previously imagined.

The Australian Action on Pre-Eclampsia (AAPEC) has a website at http://www.aapec.org.au with a good FAQ and stories from people who’ve been through it personally.

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.

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.

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.

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