Bigger and better adventures

Earlier this month I volunteered to help out on the National Premmie Foundation’s stand at the Pregnancy, Babies and Children’s Expo when it was running in Perth.  It was great to meet some premmie mums from interstate, as well as catch up with local mums.

Since then I was thinking more about what I could possibly do to help other parents of premature babies in Perth.  I’m not really an organiser of events or other people, as I prefer to take a “behind the scenes” approach.  So I thought about what had worked for me, when I was looking for support.

In a nutshell, what I did at the time was turn to the internet.  It took me several months before I found what I was looking for (and it turned out to be L’il Aussie Prems!) so I decided that maybe I could make that journey shorter for someone else by having a local site.  My hope is that if anyone goes searching on the internet for premature babies and includes the word Perth, hopefully they’ll find me - and I can provide links to LAP, other national support sites, and any local groups in Perth too.  I will also post information that I think is interesting and relevant to premmie parents.  In the longer term I hope to be involved in more than just providing information, but I figure this is a good start.

So here is my site:  www.preminperth.net

Of course it also gives me another opportunity to show off my amazing little daughter.  And yes it does owe a lot to this site… once again I would like to say thank you to Jules for providing this great resource - forum, blog space and all - and being an inspiration!

Time flies when you’re having fun, and Talia certainly seems to be enjoying herself!

In the past month her crawling has reached warp speed and her cruising is also very good. She pulls herself up on just about everything and anything and will walk while holding on with one hand (although she prefers it with two).

She finally realised it was quicker to go down the step backwards than to sit at the top and call for help, and as a result is now able to move all around the house. She’s also applied the going down backwards knowledge to new steps in other locations, which is good, but isn’t too sure what to do when there is more than one step, which is all we have at home.

A big achievement for the last month has been the development of pointing and waving. Her pointy finger is not the most accurate, but it’s getting better, and the waving is a bit sporadic too - but it’s still pretty exciting for us!

We’ve just started the transition to cow’s milk, and that has gone very well. When I first tried giving it to her several months ago she didn’t seem to like it at all, but now she’s very happy to drink it straight from the fridge, and I’m only making up formula first thing in the morning and last bottle of the day (so probably less than 200ml in total) to give her the benefit of the various vitamins etc that are part of the formula.

As far as eating goes, we haven’t really made any great progress. Talia will occasionally eat a small amount of food from a spoon, and sometimes put the spoon in her mouth by herself, but not often. I’ve given her a small amount of food and a spoon and left her to play with it and she hasn’t wanted to actually eat any of it at all. She still loves to eat beef sausage, peas, corn kernels, and beans, plus a bit of pasta and rice. She’s OK with toast for breakfast and will usually eat bread spread with avocado or pate. I had been buying a range of baby snack foods because I was tired of making things she wouldn’t eat, and for a while she was happy with Heinz muesli bars and cheesey breadsticks, but has now abandoned them too. So I’m back to doing a bit of baking and she is currently happy to eat some biscuits and slices I’ve made. Her weight is still around the 10th percentile or just above it, so I’m not at all worried about it, but I wish she would eat a few more “normal baby foods” like fruit or yogurt, neither of which we’ve had success with.

Talia still doesn’t have any real words, but has a fantastic range of babble sounds (used indiscriminately) and will sometimes copy sounds. I took her into a pet shop and showed her some fish in an aquarium, and when I said “fish”, she said “vish”, which was cute. She still makes a noise which could be interpreted as “cat” when she sees our cat, but she uses the same sound at other times when the cat is absent, so I’m not convinced. She hasn’t picked up any more Auslan signs either, and for a while even stopped using the one sign she had started to use (”milk” which she uses to mean “I want it, give it to me”).

In terms of play, she’s discovered the joy of going up and down the slide. She can almost put in a puzzle piece. Of course she still loves her books, especially the ones with flaps. She gets quite excited by new things, or seeing people she hasn’t seen for a bit, and squeals with excitement. She starts a lot of games of peekaboo and can be kept amused for ages if you have the stamina to keep playing!

We have fully transitioned to one sleep per day. Unfortunately it’s not particularly long - an hour or an hour and a half if I’m lucky. But it seems to be enough to get her through the rest of the day, and if she is too tired then we just put her to bed by 7pm instead of the usual 7:30pm. For a while she was getting very upset about going to bed and crying so much she threw up, but now I put her in sitting down and it seems to be better - she can still get upset sometimes but it’s harder to throw up.

She can also be quite difficult when I’m trying to change her nappy or get her dressed/undressed, but I’ve managed to stop it getting out of hand. I have a change table toy which she doesn’t play with elsewhere, and that is often enough to distract her. I also try to change her clothes while she’s standing up, as that seems to be less distressing to her.

And just a few stats: 9.03 kg; 72.0cm long; head circumference of 47cm … and 11 teeth

This time last year my friends’ son Alexander turned one year old, and we went to his party. It was the first time we had taken Talia anywhere further than a few blocks from our house since she came home from hospital six weeks earlier. It was a big event for us emotionally as new parents of a prem, as we were still very concerned about her contracting even a cold after she was diagnosed with chronic lung disease as a result of spending 11 weeks on CPAP, and we were not sure how we would cope with seeing lots of big babies.

In the end it was fine, Talia was thrilled to make her first acquaintance with balloons (which she has loved to bits ever since) and I ate the contents of her lolly bag (tut tut mummy!)

Fast forward 12 months to today and we were back at Alexander’s house for his second birthday.  The little kids from last year were positively enormous this year, but Talia has grown quite a lot too.  She scoffed three pieces of fairy bread, two pieces of sushi and a range of other food, crawled around the place, popped a couple of balloons and greatly enjoyed trying out some of Alexander’s many toys.

Then after a power nap in the car on the way home, she spent part of the afternoon rearranging the sandpit.

Life is good.

Daddyfeatures and I are natural born couch potatoes. We were the kids who had no natural co-ordination and always got picked last for primary school sporting teams. In short, Nerds ‘R Us.

As a result of our own miserable playground experiences, we’d really like Talia to be a life-be-in-it, have-a-go sort of child. Given her genetic inheritance and her prematurity, we figure it will take a bit of effort on our part to help her gain the confidence and the skills that we seemed to miss out on. So we’ve started by giving her experiences in the playground beyond what she might get if we worried too much.

Fortunately for us, she loves it! The swing is a daily delight and she shrieks with happiness as we push her until the chains of the swing are flying out almost horizontally. (I give thanks to the person who invented the bucket swing for toddlers!)

The slide was tolerated and she didn’t seem to mind sitting at a height almost 5 feet above the ground and sliding down on her bottom while holding my fingers. Then a couple of days ago I decided it might be interesting for her to go down on her tummy, feet first. A stroke of genius, even if I do say so myself. She was exhilarated and couldn’t wait to do it over and over - and then she climbed back up the face of the slide, for the first time ever - and not only that, but she managed to clamber all the way to the very top, twice!

As you can imagine, she was very pleased with herself, almost as proud as I was!

At this rate it will be no time before she’ll be in the front carriage of the roller coaster at the show with her eyes open and both arms in the air. If my hair isn’t grey by then no doubt it will be soon after!

Just a quick post with Talia’s latest achievements…

Since her 12 month corrected paed check up, Talia has started:

- walking behind a cart

- climbing up and down steps (only one a time as our house doesn’t have a staircase)

- responding to a simple command to give me her cup, which was previously always dropped over the edge of the high chair

- recognising some words - she will, if asked, go and find some of her toys which she knows by name

- making a few new sounds - like ta ta ta, and something that sounded suspiciously like her name - Ta-ee-ah

- hugging some of her toys

 DEVELOPMENTAL REVIEW OF:
NAME: Talia
DATE OF BIRTH: 20/03/2007 EDC: 20/6/07

SEEN IN.-THE KEMH DEVELOPMENTAL ASSESSMENT CLINIC ON 25/06/2008
Talia was seen for developmental assessment today as part of the neonatal follow up programme. Talia was born at 26 weeks gestation weighing 855gm and is now 15 months of age equivalent to 12 months corrected age. Neonatal details are shown on the discharge summary. Features of note included: Chronic lung disease requiring supplemental oxygen and CPAP for a long time. Normal cranial ultrasounds, no IVH, no retinopathy of prematurity.

RECENT MEDICAL HISTORY
Talia has been healthy with no hospital readmissions since she was initially discharged. She is seen regularly by ophthalmology and they have no concerns. She has also been seen in audiology for hearing testing - there has been some middle ear Eustachian tube dysfunction and she is due to be reviewed again for hearing testing. Immunisations are up to date. Health is otherwise satisfactory.

DEVELOPMENTAL PROGRESS
Talia has demonstrated developmental delay across all skill items at each of her developmental reviews, however she is beginning to make some considerable gains and her parents are pleased with her progress. She has now been crawling on all fours for about a month and did not ever commando crawl. She pulls herself up to standing and is cruising around the furniture and will walk when she is led with fingers. She does not yet walk behind a trolley toy and is very reluctant to climb up any steps or pull herself up over a ledge or onto a sofa. Hand preference is not yet clearly established. She claps hands in imitation but is not yet waving ta ta or pointing at objects of interest with her index finger. She can pick up small objects with a bilateral pincer grip. She does not yet use any words specifically apart from possibly cat and does not say mama or dada. She, however, responds to her own name, enjoys music and singing but does not vocalise to herself with this. She does not consistently shake her head for no. She is normally a very placid and happy little girl. She is not particularly affectionate, however plays interactive games and helps with dressing. She fingerfeeds herself and can drink from her own sipper cup, is not yet using a spoon. She sleeps right through the night and has two short daytime sleeps.

ON EXAMINATION
Talia’s height was 70.1cm (3rd-10th percentile), weight 8.56kg (10th-25th percentile) and head circumference 46cm (50th percentile).Talia is now well established on the percentile chart and tracking along the percentile lines.

A Griffith’s Test (Revised) was carried out, with the following results:
A Locomotor 31 - 10.25 months
B Personal / Social 35 - 11 months
C Hearing / Speech 26 - 9.5 months
D Eye / Hand Coordination 31 - 10.75 months
E Performance 31 - 11.25 months

Age Equivalent 10.5 months

During testing Talia was beginning to demonstrate concept of object permanence and roll a ball in reciprocal play. She currently drops a cube for a third, clicks bricks together and is starting to put blocks in and out of containers in play. She made attempts to play with the formboard puzzles but was not able to complete these. She was trying to replace the bricks back in the box and demonstrated normal fine motor dexterity.
Neurological examination shows no evidence of focal neurological signs or asymmetry. She has normal muscle tone and power but reflexes were difficult to elicit. Parachute response was symmetrical.
General examination of cardiovascular, respiratory and abdominal systems showed no abnormality.
Normal female genitalia. No birthmarks or scars of note.
Vision was assessed using Stycar mounted balls and she followed diameters down to 2mm suggesting normal visual acuity.
Hearing screening was carried out using visual reinforcement audiometry and this produced prompt responses on either side at 25dB level suggesting normal auditory acuity. Tympanic membranes and Tympanography were not done. Dentition was normal.

At just 12 months corrected age, Talia is making satisfactory developmental progress following her extremely preterm birth and low birthweight. I think she would benefit from involvement of Play and Learning and understand that she has also been referred onto CDC Physiotherapy for monitoring of gross motor skills in recent months.
As part of the neonatal follow up programme Talia will be seen on a regular basis until school age and the next anticipated review is at 2 years corrected age at the State Child Development Centre. I would be happy to review Talia again in 6 months to monitor her developmental progress should there be any concerns in the meantime.
DR XXXX Developmental Paediatrician

Happy one year corrected Talia!

Less than 2 months since Talia first crawled, she has started to walk and push a little cart along! We loaded the cart up with bricks, phonebooks and a street directory to make it easier to push without running away from her.

This video was taken on July 13, a day after she first pushed the cart herself.

http://www.youtube.com/watch?v=zchY3DSIteI

The last few weeks have been c.r.a.z.y.

Everything was going along fine, until 2 days before Talia’s 12 month corrected paed check up. We had a phone call to say Talia’s Grandpa (my father-in-law) had suffered a mini-stroke while on holiday in South Africa, and was in hospital. He had severely blocked carotid arteries and would require surgery before he could fly again. It might mean that he wouldn’t be able to make the baby blessing we had organised in Perth for July 5.

Tuesday 24 June. We phoned the in-laws in South Africa and were told Grandpa had just gone into the operating theatre. It’s a routine operation. Grandpa has survived much worse things in his life and we are sure he will be fine.

Wednesday 25 June. Talia’s 12 month check up. When we got home we read the email saying Grandpa had suffered another stroke at the end of the operation. “At the moment he does not have the use of his left side. However this may change and he could recover from the present paralysis. Tomorrow morning he is having a brain scan and from this we will know more about his condition.” Now we were worried, and started planning a trip to South Africa to visit him. Naturally we want to take Talia, the apple of his eye, but she doesn’t have a passport. I spend the evening filling out the passport forms.

Thursday 26 June. Another email in from South Africa - “Unfortunately the scan does show substantial damage to the brain. The extent to which the damage is permanent is unknown as yet, as he may still hopefully recover somewhat. At this stage he is sleeping most of the time and is unable to speak although he does seem to respond to some stimulation, and seems to hear what we are saying to him.” Talia is perfectly behaved for her passport photos. We call the doctor in South Africa in the afternoon and he says that if Grandpa can last until Sunday, then he will probably pull through. We later talk to our in-laws, who say his condition has deteriorated since yesterday. We advise people in Perth that the baby blessing is looking like it might not happen. We wonder if we should fly without Talia, especially if Grandpa is in intensive care.

Friday 27 June. The passport application is lodged in the morning, and I spent the afternoon looking at flights to Johannesburg for my husband departing on Sunday, with me and Talia to join him once the passport arrives. In the late afternoon the phone rings with bad news. The doctors have advised the in-laws that Grandpa is not going to pull through. It’s almost too much to take in. When I say that Daddyfeatures was going to fly out on Sunday, they tell me they are sure it will be too late. We are left in limbo, waiting for the worst to happen, scarcely able to believe we won’t see him again and cannot be there even to hold his hand as he lies in intensive care. Little more than a year after our own experiences with intensive care, the pain is very real. I wonder if Grandpa has the same leads and monitors as Talia did, as I picture him drifting gently away from us. The nightmare we were spared with our daughter has come back to haunt us. I cry a lot.

Saturday 28 June. A week before the baby blessing was due to take place, I dress Talia in her beautiful bright dress and we take her to synagogue. We finish the service with one of my favourite tunes and go home to hope the phone doesn’t ring, that somehow Grandpa might still have a ninth life left and the doctors might be wrong. Unfortunately, later that afternoon, the phone rings to tell us we have lost him. I cry a lot more.

Sunday 29 June - Tuesday 1 July. Uncle Peter arrives from Canberra - he was going to come for the baby blessing and just changed his ticket. It’s good to have all our little family together. Grandpa’s body is being repatriated to Sydney later in the week. We organise flights to Sydney, accomodation for the cat, hire of a cot and high chair and car with a baby seat, notices in the papers.

Wednesday 2 July. We fly together to Sydney. It doesn’t seem real. I thought walking into Grandpa’s flat would be like a slap in the face but even though no-one is there it just feels like normal, as if he will pop out of the study at any moment and say “Wow, look at Talia” with a big beaming smile and a European accent still strong after more than 50 years in Australia.

Thursday 3 July. The sun rises and Sydney shines in the early morning light. From the window of the flat we can see little caterpillar trains scuttling over the harbour bridge, and the ferries criss-crossing the harbour. Grammy and Grandpa are flying back from Johannesburg and the city he has called home for so long revs into life. Four million little parallel universes rush about their daily business. Even when the Rabbi comes to talk to us about the funeral arrangements it doesn’t seem possible that one clock has stopped ticking forever. Grandpa was good friends with the Rabbi, who has a young family and kindly offers to have Talia come to his house and stay with his children during the funeral.

Friday 4 July. The morning we should have collected Grammy and Grandpa from Perth Airport is instead the day we say goodbye. We hug a plethora of people we hardly know, the Rabbi sings a heartfelt lament, then we drive out to Rookwood Cemetery in a black stretch limousine in the pouring rain. The wet clay soil sticks to our shoes and I can hardly tell who is there for the drizzle and the large umbrellas which hide everyones faces. Grandpa’s simple black coffin is lowered into the grave dug deep beside that of his beloved first wife and we shovel the clay over him like a blanket. We collect Talia from the Rabbi’s home, where she has been very happy despite it being the first time she has ever been left with strangers. In the evening, we eat with Grammy, her children and grandchildren who live in Sydney. From Grandpa’s side of the family there is only Uncle Peter, Daddyfeatures, Talia and me. We talk as if he was still with us. He would be marvelling at how much Talia has grown, how she crawls now and pulls herself up to stand. He was longing to see her walk.

Saturday July 5. The day that should have been the baby blessing. We all go to Grandpa’s synagogue. It’s Orthodox, unlike our own progressive community, and the men and women sit separately. It’s the first time I’ve ever been to an orthodox service and it is both familar and strange all at the same time. At the end of the service they sing my same favourite song that our congregation in Perth sang the week earlier. It felt like a bookend, enfolding the week and tying it all together at the same time. I can’t quite explain it but it just felt right. Even though we would be far away, the bonds would still remain.

We were planning to fly to South Africa to visit Talia’s Grandpa in hospital, and these are the photos taken for her passport application.

Talia finally had a hearing check at the audiologists today, following on from the one where she was too clogged up with a cold to be able to test properly.  It showed that although her eustachian tubes are “sluggish”, her hearing is within normal ranges.  They’ve recommended we go back in summer to confirm that the sluggish tubes are not a permanent problem.

Hoorah, one less thing on the list of potential problems! Although I’m sure selective deafness is only a matter of time…