Hiding!

Rose is at such an adorable age right now. Her language skills have taken a big leap, and has also discovered how talking can get her out of a tight spot. Lately I’ve been letting her walk home when we’ve been up at play group. She knows that she has to stay close to me and hold my hand when we cross the road. If she starts dawdling or not following safety instructions she has to go back into the stroller.

However, it’s also obvious that as soon as we round the corner to home she wants to delay us more and more. This morning we were nearly home and I noticed that she wasn’t following me any longer. “Rose, honey?” I asked, almost in a panic. No answer. Quick, turn the stroller around and get back to where I last saw her. I found her crouched below a brick wall a few houses back. “Mummy…. Rosie hiding!” she said, with a monkeyish grin.

She loves her sister so much and I’m pretty sure she knows exactly what’s going on. She has always shown a lot of affection for Tess, but lately she’s been kissing her more than usual, rubbing her soft head, and talking about her. The morning we left her with Tara and Nick so that we could take Tess to see the ophthalmologist she apparently talked about Tess a lot to them. And when we got back from the appointment, obviously upset, and in my case, crying, she studied my face, saw my running mascara and said, “Eyes…. sand?”

Now let’s take a pause for a second. I’ve been told that children don’t have empathy until they’re eight years old or so. But, is this not evidence that Rose was trying to relate my suffering to her experience? I was also completely heartbroken in this moment because I have been trying to get her to play in sand pits for months now and she hasn’t shown a jot of interest… and now I know that she must have got sand in her eyes at some point, and that’s why she doesn’t like sand pits. Heartbroken!

I explained to her that I was sad about Tess, that Tess wasn’t very well at the moment, but that Mummy was OK, Daddy was OK and Tess was OK.

She just laughed!

So I was just sitting with Tess in my lap sharing a joke with Rose, and Tess threw her head back, opened her mouth wide and gave a very hearty chuckle. Oh my gosh, my heart simultaneously melted and broke apart at the same time. Such a gorgeous girl.

And phew, it’s Sunday. That means we’ve started another week. Last week was so tough. On Friday we eventually had the blood tests that will (hopefully) help the doctors work out why she has a cataract. We had to have the tests in the hospital. At first I wondered why, surely they were just blood tests. But then when I saw what they had to do to get blood from her. Because babies are so little and chubby their veins don’t stick out so the technician has to really know what they’re doing. It was pretty hard to watch. Actually, I didn’t do much watching – Chris did an amazing job at holding her and keeping us strong, despite being much more squeemish than me at the sight of blood. Poor Tess got pretty upset, and it was hard to hear her so distressed.

After that we had to go and have a renal ultrasound and MCU, which is completely unrelated to her eye problem, it’s because she had that urinary tract infection a few weeks back. Bad news. She has a kidney reflux problem, where her pee travels the wrong way up the tubes to her kidneys. She has a pretty bad case, so she’ll probably have to be on a permanently low dose of antibiotics, or possibly surgery. If I’m sounding a bit blazé, believe me I’m not. It’s just that as bad as all that sounds it’s nothing in comparision to the worries about her sight. Renal reflux is apparently pretty common. But our poor girl, she’s having such a tough time right now.

Closer

I just got a lovely email from my mate Tom. I’m sure he won’t mind me sharing, here’s what he said:

First up, no blame no shame. I’m sure you know that, even though you may not be feeling it right now.

Secondly, our children are lucky to be living now rather than when we were kids. At the risk of sounding like my granny, its amazing what they can do these days.

Thirdly, whatever happens now she is sure to grow up into an extraordinary person.

My best analogy is with when Barnaby suffered his burn injury. After the initial shock, we learnt do deal with the situation in the moment and not to project forwards into worst case scenarios. It’ll draw you together even closer as a family, and you will all get through just fine.

Tom is spot on, I reckon. Especially about the last point about it making us closer as a family. We’ve had a frustrating day phoning and leaving messages for doctors who don’t call back, and waiting, waiting, waiting. But it was a strangely lovely day because Chris took carers leave and we spent the day at home just looking after and caring for Tess (Rose was at childcare). The Tresillian nurse was here in the morning to help us with Tess’s sleeping. But frankly? All of us felt like letting her do whatever she wants. This afternoon I walked up for an appointment with our family doctor to keep her informed with Tess’s visit with the ophthalmologist. She left a message with our pediatrician to find out what’s going on, but at least he called her back. Apparently she’ll have a barrage of tests in hospital, but they’re taking a while to organise.

One final thought. Our pediatrician has horrible communication skills. He seemed to find it strange that we might be concerned and wanting to know what was going on. I’m sure his life is difficult and busy, and it’s a hassle checking in with parents all the time. He gets a D- for communication. But for everyone we talk to, from our family doctor to my midwife friend Tara, his skills as a doctor are A+. We are thankful.

Our Perfect Girl

How do I write about this? I don’t want to write about this. I don’t want it to be true.

Our darling Tessa, our perfect baby girl has blindness in one eye. I noticed a problem ages ago, that she had differently coloured eyes. I asked the pediatrician at the 6-week checkup, he said it was just a normal variation in colour. The GP thought there was an issue, but said to wait and come back a few months later for a review. The next review there was still a problem. Referral to a pediatric ophthalmologist. Today we had the appointment.

Tess, darling Tess, has a cataract. I could only helplessly watch as the Ophthalmologist went from calm to worried. When he started fussing and muttering to himself. I knew then. He thinks she’s had an eye infection, but he’s not sure. We need to do more tests to find out what kind of infection, or whether it’s an autoimmune disease or something. He thinks she hasn’t got much sight in that eye any longer. He says after we have the tests we’ll have to sit down and work out whether to operate or not. He said she could lose the eye completely if we operate. It’s a case of weighing up some gain of eyesight versus the risk of losing the eye. He said, “A young girl…. it’s not just about sight…”

My baby, my baby. How could this happen? Dear Fate, could you not please take mine? Take an arm or a leg, too, I don’t care. My thoughts are unspeakable. Did I do this? Did my Graves Disease cause this? Could things have been better if she had seen the ophthalmologist earlier? I don’t want to talk about this, I feel a deep sense of shame.

Dearest Tessie. I know you so well. I look into your face for hours a day. All the sleepless nights. All the kissing and cuddling and laughing. I don’t want you to be teased at school. I want you to be the prettiest girl on the block. Of course you will be the smartest. I want to bundle you up and cuddle you for the rest of your life. I want to hold you forever. You are my darling baby.

Birthday party season

Rose had her second birthday party with her other friends at the parents group today. Oh my gosh, she’s nearly TWO! Rose had a great time, and so much more independent than this time last year. She was able to play by herself and engage her friends in play. I listened in to her talking to her friend Isabella. The conversation ran to a narration of what they were doing “Sit Down!” “Hat!” and “Door!” (they were playing with a cubby house). Also, Rose discovered a new joy in life: chocolate crackles. Once she discovered the chocolate crackles we couldn’t get her to eat any lunch other than chocolate crackles.

She learned some new words today, too: Cake and Party, and Two. She also started using adjectives and nouns together (e.g. Pink Balloon).

Time to wake up

It’s funny how when you’re sleep deprived and then you suddenly get quite a good night’s sleep you wake up more tired than ever. I feel spacey when I’m really tired. I’ve been feeling spacey a lot. When I’m tired it means I’m not so tired. Hmm, now what was I saying?

Yes, back to sleeping. Tess isn’t very good at it, like many 4-month babies. But last night it wasn’t so bad – she only woke three times! At 12.30 for a bottle with daddy, at 4.30 for a breastfeed, and at 6.30am for a quick resettle until proper wake up time 7am. It was a great feeling to actually wake up this morning, as opposed to being awake most of the night and then just succumbing to it being time to get out of bed. So a good night’s sleep means the baby sleeps well during the day? Not so much. She only slept for 20 minutes this morning and when I got her home for her long afternoon nap she would only sleep another 40 minutes. It then took me an hour of dummy-putting-in, rocking, and finally swaying in my arms to get her to resettle. (The sleep specialists all say she should be sleeping for longer during the day and I should resettle her if she wakes after only one sleep cycle.)

Meanwhile Rose? She slept for 2 3/4 hours this afternoon! And she sleeps for 12 hours at night uninterrupted. It’s incredible that my 2 year old sleeps more than my 4-month old.

Fortunately we have a home visit from a Tresillian nurse next week. (For the uninitiated, Tresillian is a free government-run service that gives Australian families support and advice on routines, settling babies, etc.) I can’t imagine what she could possibly suggest that we haven’t already tried, but if it helps it’ll be great!

Up little bunnies!

The girls have recovered from their various illnesses remarkably. Rose’s vomiting bug was just a brief flirtation with sickness, really, it didn’t last much more than 24 hours. Tess has perked up considerably since the antibiotics kicked in. The only problem is that she has diarrhoea from the antibiotics, the poor thing. She has to take a full course of antibiotics for 7 days, then a maintenance dose until she has her renal scan in two weeks.

So all should be right? Well, not really. When Tess got ill she started sleeping really badly at night. And now that she’s no longer sick? Still sleeping badly. By badly I don’t mean horrendously. But she is waking every 2 to 4 hours, but that still means we’re up 3 or so times a night. Also sometimes she’s waking around 5am or 6am and not wanting to go back to sleep. Lots of my friends have early rising babies, but Chris and I are most definitely not early morning people. Fortunately she usually dozes off again after being brought to bed with us (something I swore I’d never do. Oh well.) All we can really do is hang on and do our best until she’s a bit older, you’re not supposed to “sleep train” babies to sleep through the night until they’re 6 months old or so.  But I can’t help but remember the easy time we had with Rose and miss it terribly. I feel pretty tired most of the time!

And speaking of Rose. Her talking is really zooming ahead. She’s combining words together into simple instructions (The other day she handed me a DVD and said, “Door….. Open?” ). She’s been enjoying play group on Mondays a lot. Yesterday she loved the group story and singalong. They sing this cute little song about bunnies, and all the kids lie down and then jump up when the song goes “Up little bunnies, hop! hop! hop!” All day she’s been asking me to sing “Bunnies!”

Sick and tired

We’ve had a rough few days. Tess has been sick all week first with a cold and then a persistent fever. I took her to the doctors twice, each time she showed no signs of infection in her ears, nose, throat, chest, etc. The doctor thought that it was likely a urinary tract infection. Uh-oh! I remember those! Specifically, I remember the bally-hoo we went through getting a pee specimen from Rose. The doctor said there was no easy way with a baby. She said that using a plastic bag or squeezing a nappy out would inevitably result in a contaminated specimen, so a waste of time. She said I had to just sit and wait with a specimen jar, try to catch the urine mid-stream, and try not to get any that had gone down her leg.

So on Wednesday afternoon I sat with her in my arms in quite an uncomfortable position, with my hand holding the specimen jar under her nether regions while the other arm kept her upright for about three hours. What was Tess doing? Mostly sleeping. She finally peed, but guess what? My mind had inevitably wandered and I missed it. Completely. Chris came home and helped me, and two further hours later he finally got the goods. It was easily the most frustrating experience of my life.

Today the results still hadn’t come in but I couldn’t take it any longer. Tess had been running a fever for 7 days by this point and we haven’t been getting much sleep, so I went back to see her doctor. Fortunately she was able to phone for the results – guess what – she has a raging UTI! I was so relieved to finally have a diagnosis. Unfortunately it also means that she has to see a specialist because 30% of UTIs in children are the result of something called vescio-ureteric reflux, where the urine travels the wrong way through the tube connecting the kidney to the bladder. She’s on antibiotics, and she has an ultrasound and dye test in two weeks. I’m not even going to contemplate any worst case scenarios right now, I just want to deal with today today.

And I haven’t mentioned Rose yet. We discovered the reason for Rose’s behaviour yesterday: A vomiting bug. She vomited in bed twice last night, involving complete changes of sheets, the poor thing. She seems better today, but she’s still off her food a bit and really weirdly emotional and insecure.

Poor Chris didn’t get much work done today – I begged him to stay home to help me with the vomiting toddler and the fevered baby. We also both feel like test subjects in a sleep deprivation experiment. Fingers crossed for a bit of sleep soon!

School Days

Chris got a phone call this afternoon from Rose’s day care. Apparently she was having a bad day; she’d been crying a lot, didn’t have much of a sleep and not much lunch. Their advice was to come and collect her.When Chris got their she seemed okay, but was a bit anxious about having her water bottle. She seems to have transferred a lot anxieties onto her water bottle at the moment. She often asks for it.

This afternoon she was pretty fragile. I’m not sure what’s up with her, but we’re glad that the day care centre called. I hate to think of her being upset and needing her mum or dad! When her and I headed out to pick up some pizzas (Thursday is pizza night!) she got frightened when we went to get into the car and tried to run away. What strange anxieties to befall such a confident little girl! Fortunately it’s the end of the school week for her, so hopefully some of the anxiety will abate.

The good thing is that Chris got the opportunity to borrow Rose’s portfolio from school. The carers use a portfolio to record the activities that Rose participates in, and her reactions to them. It’s full of pictures and stories. It’s so wonderful to get such close detail on Rose’s life in day care. There are some heartbreaking moments, moments when I want to reach through the pages and pick her little school self up and kiss her and calm her. Here’s an example (copied out verbatim):

Rose just started attending the centre. Rose is interested in everything. Everything’s new for her, new people, environment, relationsips and routines. When she’s doing activities happily, she didn’t want to stop (almost all children dislike stopping activities). Rose wasn’t used to the centre’s routines yet, she was a little bit confused about the centre’s routines (e.g. before lunchtime stop play and pack away toys and washing hands…). Children have to stop paying during transition time so that they can clean up before going either indoors or outdoors all together. Rose is a flexible child, she will become used to the centre’s routines little by little.

There are things documented that I’m familiar with, such as Rose’s likelihood of pouring  a watering can on the ground rather than over plants. Also, this passage describing how she plays with balls:

This afternoon Rose played with balls for a long period of time.  [...] Rose excitedly caught the ball from Ryoko by chasing it and picking it up. Rose continued catching and throwing ball game with Ryoko without becoming bored. Rose enthusiastically chased after the rolling ball again and again. Not only her arms, but Rose uses her whole body to toss the ball into the air. She jumps two feet together like a spring.

And there are glimpses of the way Rose interacts with the other kids:

A large cardboard paper was attached on the wall in the playground for the children to paint this morning. Rose and the other children all participated in painting using a thin brush. In this activity, Rose spent a long period of time just painting over layers of paints on the paper. Rose was engaging herself in stroking the paintbrush on the paper and coming back to the paintpots to dip her brush repeatedly. In the end, Charlotte smeared her hand on the paper. She saw her hand with  mixed colour paints, grinned and showed her hands to Ryoko excitedly. Rose was observing Charlotte and did the same.

Memories

Time is going by so fast. Tess turned four months old yesterday. Four months! I remember time going by very slowly with Rose; since we’ve been a family of four I can’t keep up.

I want to catch hold of the moments. I don’t seem to have enough time to savour them, or even to process them. I want to remember how she looks first thing in the morning when I unwrap her from her swaddle, the way she arches her back and wriggles with the freedom. I want to remember how she smells like buttery popcorn when she hasn’t had a bath for a day or two. I want to remember what it feels like to be on the receiving end of one of her smiles, the luckiest girl in the world (me, that is). I want to remember the weight of her light but sturdy body as I swing it high up in the air. I want to remember her long feet with the curled toes and her tiny little nostrils and her chubby little dimply hands. Her soft short hair with the wispy remnants of her birth hair. Her cat like wimpers as she drifts off to sleep. How much it cuts me up to hear her cough or feel her fevered brow or for her to experience the slightest amount of suffering at all.

Oh my gosh, and this morning! One of the best memories of all. You woke up at 7am and I coaxed you back for a few more hours sleep in bed with me. You, nestled into my armpit, my hand on your tummy. A blissful, precious few hours stolen from the hurly burly momentum of the day.

I see, hear, smell, know and love you, Tess.