Sunday, June 30, 2013

26/52



"A portrait of my child, once a week, every week, in 2013."

Maggie: asleep in the winter sun. Her hair is growing thick and dark on top, but oh so soft. Her tiny nose is changing shape,  her perfect rosebud lips stay the same but now she even has eyebrows. Her forehead is widening, and thank goodness evening up after her early preference to lay on her right side and caused it to get a bit lopsided! Under her new handmade rug from her Aunt.

Elisabeth: quite proudly grasping small toys now, bringing them closer to her mouth. She had quite a week; laughing for the first time, almost rolling over (pesky arm got stuck), grasping toys, and finally a little taste of some pumpkin soup. I know that you are meant to start with cereal. But she was interested as I was eating it. So I cooled a little on my finger and gently laid it on her lip. Sure enough she licked it happily and several more. Our Dr did say as ex-premature babies they may start solids a little early. But she's still only 14 weeks corrected. So I'll put it down to curiosity.

Linking up with Jodi at cheandfidel.blogspot.com.

Apparently as we are half way through the year she will pick her 3 favourite portraits of Che and Poet, which no doubt will be tricky given her beautiful photos. Not sure I should join in given my late start at 17 weeks!


Saturday, June 29, 2013

A dishy new addition

We have put up with rubbish Internet at the hut for 2 years. Without a landline we have relied on Internet via our phone or iPad. There is only service in the windows. We must look funny always holding our devices up to the nearest windows. But no more. Rob organised our free NBN satellite dish, but due to the steep pitch of the hut roof (and Rob not really wanting it up there for aesthetic reasons) we had to have it installed on a pole behind the hut. So it was delayed for 5 weeks. Then it was raining, so the contractors weren't keen to dig in the rain. So we had to keep waiting. 

But today was the day. The two workmen arrived early this morning. Dug a 1.2m hole, inserted a 2.5m pole, attached a dish, dug a trench to the hut and connected it all up. Nigella and Claudia love building and digging. They excitedly followed the guys from their ute to the site, checked their progress during the day and protected the babies when they came inside to set up the internal modem.

The result? 5.3 megabyte download speed. Amazing. Who knew.

Maybe that iMac has just jumped up the wish list. Blogging may not be such a chore.

Wednesday, June 26, 2013

25/52



"A portrait of my child, once a week, every week, in 2013."

Maggie: the girls had their 6 month vaccinations and when we got home Maggie wanted cuddling and to hold my hand. I was happy to comfort her in any way.
Elisabeth: the girls are both now in 000 clothes, but she just fits this handmade cardigan. Big news here is that she also graduated out of newborn nappies!

I have been feeling guilty, although I have been visiting your blogs to see your 52 project photos, trying to comment in blogger with the word verification (I know how necessary it is to avoid spam comments!) beats me still. Hoping to rectify this soon with a real computer. In the meantime I find it easier to comment in Instagram. Please let me know if you have an IG account if I don't already follow you.

Monday, June 24, 2013

Monday Menu

A quiet weekend. Sleep ins. My first bath with the girls. They liked it. A perimeter walk in the late (well not actually that late given the day length at the moment) afternoon sun. Chatting with the girls. A new spiced fruit loaf recipe to try, perfect for afternoon tea, or breakfast. A traditional roast chicken dinner. Cold frosty nights. Punctuated by a super moon and dark Mofo's Spectra. 

Today's excitement included Rob's little car breaking down at the end of the road, ironically on the way to a service. It doesn't like the cold. Rob caught a lift into town. So at lunch I packed up the girls (including the furry ones) and headed into the city to pick him up to see if we could come back and get it started. Elisabeth was not pleased. She screamed the whole 30 minute trip. Both girls slept all the way back though, so we stopped for an indulgent pack of hot chips each before tackling the car. It wouldn't start, so we headed back down the road to buy jumper leads. Back again. After fiddling under the bonnet we got the little pug going and home. It's now booked into a French car specialist who hopefully can fix it's aversion to cold. The girls only woke as we pulled back up at the hut, thank goodness.

Our fortnightly menu, Rob's taking the paleo diet semi seriously, given the amount of meat shown here. I'll have to be back with a late 52 portraits series post.


Sunday, June 16, 2013

24/52

"A portrait of my child, once a week, every week, in 2013."




Maggie: their eyes are so expressive. A cliche I know, but seeing them discover the world, is a privilege  I delight in daily.
Elisabeth: she holds my thumb while she feeds. 
Both photos by Rob with the DSLR.

A quiet weekend at the hut, celebrating a dear friend's birthday with American BBQ pork ribs, slaw and a Banoffee Pie for dessert (I mistakenly assumed it was a traditional American pie to go along with our themed dinner. Turns out - thanks Google - it's an English recipe!) 
All weekend has been rainy and cold. Winter is here.

Thursday, June 13, 2013

A half birthday

The following list is from the Miracle Babies Foundation Facebook page. The list was compiled by parents on a US premature baby forum. I have edited it to Australianise the language, and added text in italics.

Only a NICU parent,

Would be excited about:
- increased feed volumes.
- 5 grams of weight gain.
- lower oxygen levels.
- a few centimetres in length.
- seeing their baby open their eyes for the first time, weeks after their birth.
- poopy nappies.
- graduating beds (from a humidicrib to an open cot).
- moving into the Special Care Nursery from the Intensive Care Unit.
- finding out at their 10pm goodnight call that their baby is fine, that there is nothing to report.
- going to hospital (because we got to see our babies).
- Baby CPR classes (they're getting us ready to go home).
- outgrowing clothes (or actually needing to wear them as they are in an open cot).

Knows:
- the dread of walking out of those doors to go home to sleep.
- hearing your baby cry for the first time, and crying just as hard.
- the fear of seeing your baby for the first time.
- that Brady's are not referring to the Brady Bunch (a Brady,short for Bradycardia is the slowing of a babies heart rate to a [quite literally] alarming level).
- what CPAP means (Continuous positive airway pressure, the system that helped our girls breathe. Soft prongs were inserted up their nostrils or a tiny mask provided oxygen or air under a small amount of pressure. This helped keep their lungs expanded and reduced the effort required to breathe. We were lucky that neither Maggie or Elisabeth required ventilation or surfactant).
- the pain of not holding your baby for days, and then being terrified of hurting their tiny bodies when you finally can.
- the workings of a humidicrib.
- what each beep and alarm means.
- how important kangaroo cuddles are (to baby and Mum and Dad). A kangaroo cuddle is a skin to skin cuddle with your baby. They are still attached to all their tubes, sensors and breathing gear. But it helps the baby maintain a stable heart and breathing rate. It helps the Mama and Papa bond, even if it makes them cry! 
- that a parent's job is to fix whatever hurts their child, and know the pain of realising you can't.
- what a PICC line is. (A Peripherally Inserted Central Catheter. A long, flexible tube that is inserted into a peripheral vein, usually in the upper arm, and advanced until the tip terminates in a large vein in the chest near the heart to obtain intravenous access. The girls had these in their first few weeks of life to deliver Total Parenteral Nutrition - TPN - straight into their bloodstream as their stomachs and intestines weren't developed enough to absorb nutrients from my breast milk. Their PICC lines used to scare me so much in our first cuddles as I was terrified of accidentally pulling or dislodging it. I was very grateful the day they were removed).
- understands adjusted age, and counts down every day until the their due date.
- what it feels like to cry the first time you see your baby in a humidicrib. I've already written about how I wept when I saw them in my birth post a few weeks ago. I still cried most times I saw our girls for the first few weeks.
- the trepidation over announcing their birth. I waited to send cards until they were home. 
- how amazing tiny fingers feel clenched to your hand.
- the pain of hearing a woman in her third trimester complaining about her pregnancy, and wondering what that would be like. My obstetrician shared with us that as she left the hospital after delivering our girls she walked past a woman, heavily pregnant probably about to give birth, outside smoking. She told us how sad it made her feel, because she knew we would have given anything to deliver our girls full term and how careful I'd been to ensure the health of our girls.
- there are no choices in the NICU: you have to be strong. Many people have called Rob and I brave for what we endured to bring our girls home. But the way I saw it, I needed to support Maggie and Elisabeth, as they were the ones who demonstrated the true meaning of the words; strength, courage, endurance, determination, bravery and fierceness.
- cracked and bleeding hands from washing them so much and coating them constantly with hand sanitizer. The cleaning products the cleaners used also stirred up my asthma. I was so glad to walk out of that hospital and leave such an artificial environment behind. No more air conditioning, fluorescent lighting, vinyl chairs and strong smelling detergents.
- every inch of their NICU, what walls they cried against, what bed spaces they "lived" in, what shifts each Doctor, nurse, therapist and staff member worked.
- that you will be a germaphobe for at least the next two years, people will think you are weird, and you will know you are literally saving your child's life. I have already been struck by people who can not understand this, at first it hurt, but after this last week when the girls just had a little cold and how much I've watched them and worried, I won't care if I lose friends over this. I met a number of parents of premmie babies that have had to revisit hospital and even the NICU each winter as their child has battled to breathe with a respiratory illness. It will be a miracle if we don't have to revisit hospital with one or both of our girls, and I will do anything to protect them from unnecessary illnesses.
- 80 nurses by name.
- that with every day in NICU makes you one of the lucky ones. A fellow premmie mother and friend said "There are worst things in life than being born prematurely". I didn't believe her at day 4, but by day 112 we had witnessed other parents deal with much more painful sicknesses and sadder outcomes for their babies. 
- just how important each new day is and how much significance a new day holds. Our girls were born 14 weeks too early. For us our NICU ride was the ultimate waiting game. Waiting for stomachs and intestines to be able to process breast milk, waiting for the kilogram milestones, waiting for the girls to be stable enough to hold, waiting for their little lungs to mature enough to breathe unassisted, waiting for enough strength to feed on their own, waiting until they were healthy enough for us to take them home.

Yesterday Maggie and Elisabeth celebrated their 6 month birthday. In some ways it has gone so quickly, but in others it feels like years since I heard my Doctor say to me, "Marian, your body is going into labour, we need to transfer you to a hospital with a NICU." She said it calmly, but compassionately, as she pushed my wheelchair back to my room. We had just had a very scary ultrasound where we could see the mass of amniotic fluid around Elisabeth and poor Maggie crammed into my pelvis without any visible amniotic fluid. I clung to the fact that we could see two heartbeats. The only thing I could manage to say before sobbing and wanting to be held by Rob was "I just wanted my babies to be healthy". Never before have I felt so sick or had such an aching heart than I did that day.

Yesterday we also had our first follow up appointment with the NICU paediatrician and physiotherapist, and so far the girls are behaving just like healthy 12 week old babies (their corrected age), albeit slightly smaller than usual! My heart is slowly healing from that shock last December, and although I know there could always be tough times ahead, right now I am so thankful for our two beautiful, feisty, endearing, and yes, healthy daughters.



Monday, June 10, 2013

Monday Menu

We are still eating very well, thanks to dear Rob. Come 5pm the girls hit full volume and seem to forget how to sleep until 8pm. So often Rob's lovingly prepared food is wolfed down, watching the girls waiting to see who will cry next. Or indeed holding one. On weekends we've been trying to eat our dinner at lunch as the girls are usually happier then (i.e. asleep).

Rob was very proud of his meatloaf yesterday, and he should be. One of those dishes I swore I'd never eat again, with memories of a soggy bread filled mix, with raw onions and those rubbery boiled eggs, had me coming back for seconds yesterday.

Rob's garden is still producing well (horticultural fleece was a good investment), we're enjoying leeks, garlic, carrots, parsnips, spinach, lettuce, broccoli and rhubarb.



Sunday, June 9, 2013

23/52

"A portrait of my child, once a week, every week, in 2013."

Ironically, after last weeks post, the girls have caught a cold, and passed it onto me. So blog posts have taken a back seat. So far they are doing alright, but I have been watching their little chests, and checking for a fever every few minutes, then asking Rob to check too. 

On top of the three of us being snotty we also headed into town on Friday for some blood tests. Not fun. Maggie went ok, bleeding well from a vein in her hand. Elisabeth's vein did not bleed at all. So the poor nurses resorted to simultaneous heel pricks, one in each foot. Poor baby was absolutely beside herself, screaming not really from pain, but terror, despite me holding her hands and stroking her face. They gave up before the 4th vial, as by then all of us were teary.
At least it sounds as if the results were normal, I'm hoping that at next Wednesday's  appointment with the paediatrician they'll let us discontinue the phosphate supplements. 

We have been hibernating at the hut this weekend. Resting. Eating comfort food. Listening to the count down of the top 100 music from movies on classic FM.

I took these photos of the girls in the cute gum nut baby hats and onesies on Wednesday, before the sniffles started. An IG friend, kindly made them for us as a gift. Their facial expressions are classic.

Sunday, June 2, 2013

22/52

"A portrait of my child, once a week, every week, in 2013."

I admit that blogging from my iPhone has it's limitations - one of which is I can't insert images via Photobucket so that they are more pleasing size and quality. The last few weeks have seen me grizzle and sulk as my DSLR images get shrunk and fuzzy. So instead I've embraced the phone and iPad as legitimate sources for images. I am so hoping that with the satellite NBN we will have installed I can justify the purchase of a home computer. Besides I'm getting RSI in my right hand from scrolling!

Without further ado. The girls.

Maggie: wearing her first dress. Although the weather today meant we needed a few layers. Maggie is not afraid of mixing colours, patterns and fabrics!
Elisabeth: both of our dogs have been very generous in sharing their home with the twins. Last night Claudia requested a sleep on our window seat. So we let her. She snuggled up against Elisabeth who started gently touching her fur. Rob captured this smile.


I had a very quiet week at the hut. Which is exactly what I needed. Last week we had a few visitors and on Sunday we went to my niece's 2nd birthday party. We didn't stay long and I have to admit that I spent the next few days monitoring the girls just in case they had picked up a bug (there were about 30 people there). At first I felt guilty and cowardly about this attitude. But then the Miracle Babies Foundation posted a list of common NICU parents fears and experiences on Facebook, and the germaphobia issue was there. So I guess I'm not alone with the fear of the girls catching a cold or flu or worse. 
When you have watched your tiny babies struggling to breathe, even when on respiratory support, and worse actually stop breathing, you don't really want to go back to that place. Maggie needed breathing support for 86 long days. Elisabeth only 50. But I can't tell you how happy we were, let alone the girls, when they were finally free of the tubes, tape, CPAP hats, masks and prongs. Maggie actually decided for the Doctors. She was so sick of the tubes in her nose and pulling on her head, she pulled them out one night, (she was only on a low pressure by then without oxygen), and her nurse agreed with her. Watch out world, she is one determined girl.
I may share the whole list as so much of it explained what the NICU journey was for us. I don't really mind being a hermit, particularly over winter. I don't have a lot of time to sit and wish I was out and about anyway.

Saturday, June 1, 2013

Friday Flowers: yet more roses!

Late again. Still a few roses left to grace our tables.
A bunch of random red roses.

Glorious one of our favourite yellow roses.


Finally Flamingo.


I think that might be the end of the roses this year. I'm inside with the girls while Rob is outside staking and pruning, with Nigella and Claudia of course.

Can't help but share my latest purchase from Devra party in Brooklyn, NY. A kaleidoscope of coloured honeycomb paper decorations to add to my collection. They make me so nostalgic, as my father had a couple he would put up every Christmas. This time I ordered some 12.5cm cuties and completed my collection of 30cm. I just thought they might come in handy to celebrate a few little people one day! 






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