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Weigh-in

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Tuesday, 23 September 2014: One Year, One Hundred and Seventy Seven Days Old.

Ayla had her first weigh-in in nearly a month this morning, and she’s put on 200 grams; her first weight gain in seven weeks!

When we first started weighing Ayla back in July she was 8.68kg; equal to what she weighed when she was nine months old. Since then however Ayla’s weight consistently declined week after week, hitting an all time low of 8.25kg in early August.

Just before we went down south Ayla’s weight seemed to have stabilised at 8.35kg, and while that was still extremely small for her age and height we were grateful she was no longer losing weight.

The whole time we were away there was no changes to Ayla’s weight, but after starting the prescription formula on Friday I swear I’ve already been noticing a bit more chub in her face, arms and legs (even though no one else can!).

So it’s not surprising I was keen for Ayla’s weigh-in this morning, if only to find out whether I was believeing my own wishful thinking or not! But, when I popped Ayla on the scales I coudl hardly believe my eyes when I read 8.55kg.

My theory, so far, is this….

As Ayla is not growing upwards at all, she doesn’t need much food to sustain her activities and therefore she hardly eats, hence why she’s not been putting on weight either.

But, now Ayla’s on prescription formula that’s full of good fats and oils it’s providing all the nutrients Ayla could possibly need and more. So although she’s is still not growing upwards, the extra calories Ayla’s consuming are making her gain weight, because I guess they need to go somewhere!

It’s all positive I suppose, although sudden and unnecessary weight-gain comes with it’s own problems. But, hopefully by plying Ayla’s body full of goodness something might trigger inside that makes her grow again. If not though, we can rest assured Ayla’s not losing weight, becoming malnourished or damaging her organs or brain through not having enough energy to sustain her. Mind you, this is only the first weigh-gain in a while and if I’ve learned anything through all of this it’s to take each day one at a time.

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Medical Update #5 – More Results, No Answers

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Thursday, 18 September 2014: One Year, One Hundred and Seventy Days Old

It’s been a nervous wait the past few days, wondering what today would hold.

I didn’t have high hopes for an answer to Ayla’s problems, but I was dreading an complete absence of possible next steps that would leave me back at square one with only google and peopel’s theories to get me by.

But, the doctor was wonderful, again. Clear, precise, caring and to the point. Here’s what he said;

RE: Failure to Thrive

The procedure on Friday proved that Ayla’s Failure to Thrive is NOT a result of digestive issues, although he definitely concedes there is something wrong with her growth (Ayla’s only grown two centimetres in the last 9 months and she weighs even less now than she did back then. FYI – she’s now 17.5 months old). According to the doctor Ayla’s digestive system is working correctly and shows no sign of damage, meaning that her Failure To Thrive is not due to an inabilty to absorb nutrients from food. This supports his comments around Ayla not actually looking like she’s malnourished; Ayla is perfectly proportioned, just miniature in size and not growing. These findings have also confirmed that the Paediatric Endocrinologist we’re booked in to see in mid-October is the best next step for us because apparently she will be able to conduct tests that look specifically at Ayla’s size and growth as a primary concern.

RE: Lack of Appetite

The procedure on Friday did show some irritiation to Ayla’s upper digestive system, suggesting that she may be suffering a small amount of reflux. While Ayla’s reflux is far from severe and virtually insignificant, the doctor has prescribed some anti-reflux medication for us to try over the next month. He hopes that by addressing even the slightest discomfort brought on by food, Ayla may regain confidence in eating and thus rediscover her appetitite. He said it’s an unlikely long shot but something we should try anyway.

In the meantime, the doctor has also given us some gluten-free-dairy-free-anti-alergen baby formula to try. The formula tastes pretty bad apparently so he’s asked us to try Ayla on it first. If she accepts it he’ll write out a prescription for more (at $40 a tin!) so we’ll at least know she’s getting the calories she needs regardless of how much, or little, she actually eats.

RE: Constipation

We have been instructed to maintain the daily laxatives Ayla is taking, which remains at the same levels recommended for a six year old. The Doctor was concious of the trauma Ayla’s constipation could cause long-term if we stop, and he feels that the issue will resolve if Ayla’s diet improves ie; the small amounts of food Ayla actually eats at the moment are probably not providing her body with the full range of things it needs to create normal bowel motions. He also believes that we should address the growth issue as the number one concern and hopefully in identifying/rectifying that, the rest will be easier to treat.

So that’s it for now. We’re trying to get a plane ticket home as soon as possible so that we can return to normal life for at least a few weeks before heading back here again for our mid-October appointment and subsequent tests. I’ll keep you posted….

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Screaming

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Monday, 28 April 2014: One Year, Three Weeks and Six Days Old.

I don’t know what was wrong with Ayla – she’s still unsettled tonight -but she keeps screaming and crying and refusing to lie down.

Last night I was up with her til 1am and the Hubby took over until 3am, but Ayla then woke at 5am, 6am and 7am anyway.

It was tough! Ayla had a temperature but no other symptoms, Panadol didn’t work and sleep seemed impossible.

This morning Ayla was tired (weren’t we all) but she seemed well enough to go to day care. Two hours after dropping her off though, I got “the call” asking me to come and get her and take her to the docs because they couldn’t settle her, no matter what they tried.

The doctor checked Ayla’s ears, throat, nose, stomach and kidneys but all we’re clear and healthy so she sent us home to get some rest.

But still, Ayla screamed! For two hours I cradled her and rocked her hoping she would settle but it was futile… Ayla was not happy.

I eventually took Ayla outside to play where distraction seemed to keep her screams at bay.

But by the time Hubby got home from work Ayla was back to grizzling and crying and screaming and we know we have another long night ahead of us.

After dinner I sent a zombied Hubby off to bed while I sat up with a teary Ayla.

Ayla kept passing out from sheet exhaustion only to wake every fifteen minutes or so in what looks like pain.

I’ve just put her down now, at 10.30pm.

I don’t know if it’s teething, a delayed upset tummy from the formula, another UTI or something else, but whatever it is Ayla is sad, and hurting and dog-tired, and I am too.

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No more expressing

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Wednesday, 23 April 2014: One Year, Three Weeks and One Day Old.

Sadly, I had to make the call to stop expressing milk at work today.

Even though I’ve only been back in the office a couple of weeks, I’m already feeling swamped and finding time to express is becoming more and more difficult.

Although I know I can get everything done at work during my part time hours, it means using every minute effectively to ensure no time is wasted.

It feels contradictory to put “time wasting” and “breast feeding” in the same sentence, and it kills me to think I’m putting work ahead of Ayla.

But the benefits of working part time are outweighing the need for me to be religious about Ayla’s breast milk consumption, so it seems like my days of sitting in the storeroom pumping milk are over.

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Argh!!

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Wednesday, 16 April 2014: One Year, Two Weeks and One Day Old.

Argh!! I’m so tired, so sick, stressed and my boobs are turning into empty sacks while I watch.

I’m over of having sickness in this household. Over of sleepless nights. I feel absolutely terrible and I can feel my body shutting down!!

So much for the “solution” to a full nights sleep I thought I’d discovered yesterday…

After not going to bed until 9pm Ayla was up at midnight, then again 2.45am, 4.00am, 5.00am and 6.00am.

At the midnight feed I gave Ayla another bottle, then at 2.45am I gave her breast milk.

Then after that there’s was nothing more I could do except lie listening to Ayla cry through the monitor, waiting for her go back to sleep herself.

Hubby was right there with me of course and he was willing to get up and give resettling his best shot, but Ayla’s tears are for mummy, nothing else.

I can understand where Ayla’s coming from, everything she’s experienced in life so far has been turned on its head and if I were her I’d be wanting cuddles too.

But where I’d usually enjoy our quite closeness in the wee hours, last night my body just wouldn’t let me.

Finally my fever has broken but I’m sicker today than yesterday! The antibiotics are making me ill and I feel weak from having had no appetite for days.

To add insult to injury I feel terrible for Baby Ayla who needs me to be there for her as she adjusts to her new routine but I can’t even provide her with the milk she’s relied on her whole life.

It sucks. I really want to be writing about happy things, new memories and fun adventures but it’s seems to be a downward slope at the moment! I’m sure things will turn around soon, and hopefully I’ll feel better after some sleep!

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More milk Mumma!

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Monday, 14 April 2014; One Year, One Week and Six Days Old.

“Ayla needs some more milk Mumma!” said the ladies at day care this afternoon when I walked in.

“Oh no!” said I.

Since Ayla started day care last week I’ve been sending her with 2x 100ml pouches of expressed milk to last her the 7 hours she’s in care.

Admittedly it didn’t look like much but it’s hard to tell how much Ayla gets when she drinks directly, and 100ml seems to be the average amount I can express in any one sitting.

But as it turns out 200ml of milk per day, plus Ayla’s evening feed her bedtime feed and her through-the-night feeds just mustn’t be enough for her growing one year old body!

To make matters worse I have been sick with Tonsilitis since Saturday (will my little family ever be all well at the same time ??) and my supply has started to dwindle; today I was lucky to get a combined 100ml from both expressing sessions!

So as a temporary supplement for breast milk, the day care mums and I decided to try Ayla on one cows milk bottle per day, which will be diluted by 50% water, at least until my milk comes back or in the worst case scenario dries up all together.

So tonight as bed time rolled around Ayla just wouldn’t settle. My breasts were empty and I damned my stupid unrelenting fever for drawing out all my body’s goodness and making my Baby Ayla hungry.

With literally not one single drop coming out, I decided to bring forward the cows milk:water trial to see if Ayla would take to it.

She did! Ayla drank the whole lot from a bottle… That I fed her! That’s two more firsts right there!

Let’s just hope her belly agrees 🙂

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Chow-down machine

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Thursday, 3 April 2014: One Year and Two Days Old.

Ayla must be having a growth spurt or something because she has been putting away food like a champion!

Today Ayla has eaten a bowl of porridge with yogurt, two strawberries, a fish cake, a wedge of beetroot, a sprig of asparagus and some corn off the cob, two grapes, a small slice of pear, two diced up cubes of satay pork, a tablespoon of rice and some chocolate baby custard.

What’s more, in addition to all the food she’s eaten Ayla has still managed to indulge in five breast feeds and a bottle of water!

I can’t help but wonder if Ayla’s recent transformation into a chow-down machine is related to her being unable to eat for the eight days she was sick.

I’m also wondering if Ayla’s apparently insatiable appetite is the reason behind her unsettled sleeps at night, which are slowly but surely starting to drive me crazy.

Maybe Ayla’s making up for lost calories, maybe she’s having a one year old growth spurt or maybe her body is just finally calling for more sustenance than milk can provide, but whatever it is Ayla’s one hungry little pork chop, pumpkin pie, sausage, err…. Kid!