My baby’s life but gone, forgotten,
Thursday, 25 September 2014: One Year, One Hundred and Seventy Eight Days Old
Ayla has started saying “bless you!” and I’d completely forgotten to make mention here on the blog until today when I had a sneezing fit this morning.
I don’t know how Ayla picked it up – I guess from me saying “bless you” to her and “bless mummy” to myself when she or I have sneezed – but I hardly believed my ears last week when she proclaimed “bless you” to me!
I thought I may have misheard the first time but Ayla’s kept up her polite little blessing every time I or someone else has sneezed around her.
This morning Ayla dutifully said bless you after ever sneeze (and there was about five of them!) and her words were so clear it was a little unnerving!
I think it’s totally adorable though and it just goes to show how much Ayla understands about what’s going on around her. She’s such a clever little sausage…
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.
Back to it!
Monday, 22 August 2014: One Year and Twenty Five Weeks Old.
It was back to work for me and back to day care for Ayla today and it was like we’d never been away.
Because I’d been working from home while Ayla and I were interstate my return to work was rather uneventful but I was glad to be back in the office and around people again!
Ayla was also glad to be back at day care with her friends, not even coming close to tears as I handed her over, gave her a kiss and waved goodbye. I was surprised really because I expected her to be clingy and emotional after all the upheaval of the past few weeks, even though I’d had a sneaking suspicion she’d been missing her little friends.
It’s funny really, how Ayla and I loved our intense time together while we were away, but we both seemed equally grateful to be back to our routine and normal activities again.
Such a good girl
Sunday, 21 September 2014: One Year, One Hundred and Seventy Three Days Old.
Hubby, a friend of his and I went out fishing in the boat today and of course we had Baby Ayla in tow.
Ayla was SUCH a good girl; I can’t express how proud and grateful I am of the beautiful, calm, friendly and content little girl she’s growing in to!
We were out on the water for 7 hours, right through the middle of the day, and Ayla was literally an angel the whole time. She spent the the day sitting up on my chair, chewing on biscuits, chatting away to us and playing with her dolly. And whenever a fish came on board Ayla would get as excited as we were, happily pointing and declaring “fish! fish!” over and over until we threw it back.
Ayla’s awesomeness meant it was the first time since becoming a mum that I’ve actually been able to join in on the fishing action properly, without worrying about her getting into lures, falling over at every wave or eating bait… Mmm yum! Instead, I was confidently able to relax and enjoy being out on the water with my bestie (Hubby) doing what we love, while the person we love most (Ayla) watched over us and cheered on from the sidelines.
As if in thanks for her great behaviour, (in case the perfect weather, calm water and good fish weren’t enough) the “Fish Gods” put on an amazing display of beauty when a pod of dolphins came up to play beside the boat. Ayla stood up on the deck while I held on tight and we watched in awe as the dolphins swam effortlessly beside the boat coming up for breaths of air and riding the bow wave.
We all felt so lucky and happy to be witness to something so naturally beautiful; it was one of those perfect moments that make you feel blessed and thankful and get a sense that maybe you are on the right path afterall and that everything’s going to be ok.
Saturday, 20 September 2014: One Year, One Hundred and Seventy Two Days Old
I caught Ayla giving herself dizzy whizzies today!
I was in the kitchen doing something or other and I looked over to Ayla who was hanging out in her little play area. Ayla had her head down and was walking around in a tight little circle, almost spinning on the spot.
I couldn’t work out what she was doing at first and of course my mind instantly went into panic but I stood and watched for a few moments until Ayla stopped spinning. She then stood still and stared at the ground about a foot in front of her before her eyes suddenly went wide eyed and her eyebrows raised in a look that said “woooaaaahhhh!”.
Ayla then went to take a step but decided against it, bringing her little feet back together with a little wobble. It was only then that I realised Ayla had simply made herself dizzy!
I have no idea if Ayla discovered how it by accident or if she purposely knew what she was in for as she spun herself around on the spot, but when I laughed Ayla looked up and chuckled with a cheeky grin on her face.
Homeward bound, for now.
Friday, 19 September 2014: One Year, One Hundred and Seventy One Days Old
Ayla and I headed home today to see Daddy, The Dog, Cat Cat and the “Ju-jus” (chook-chooks!)
Ayla was so excited to be home, running over to Daddy as soon as she saw him at the airport and gluing herself to his side. Then, when we pulled in the driveway at home and Ayla saw The Dog she gave him the biggest smile and a pat, and later when she saw our cat lounging under the outdoor setting she squealed Cat Cat, pointed and ran on the spot in excitement.
The cutest was seeing Ayla go inside and rediscover all her toys! Ayla ran straight to her little piano, pulled out the stool and bashed on the keys for a few minutes, then toddled over to her toybox and touched everything in her reach. Best of all though was when Ayla layed eyes on her little couch – her most very favourite thing of all! Ayla screeched with delight and plonked herself down, grinning from ear to ear as she looked from me to Hubby and back again.
Ayla excitement about being home meant that an afternoon nap was completely out of the question, so instead she joined Hubby and I out in the yard as we caught up on some gardening. After three weeks of beautiful, crisp spring weather it didn’t take long for home’s 36 degree heat and build-up humidity to have an affect on Ayla, flushing her cheeks pinky-red and putting tiny beads of baby sweat on her top lip.
When bedtime finally rolled around Ayla was pooped but happy, and I was looking forward to a night in my own bed! It felt like we’d accomplished the first leg of an endurance marathon and I relished the chance for some routine and normalcy, even if it’s just for a couple of weeks before returning interstate for the next lot of tests. Thankfully though, Ayla has taken to her prescription formula easily and seems to love it, so we can at least rest assured we’re actually doing something that might help her in the meantime.
Medical Update #5 – More Results, No Answers
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.
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….
Medical update #4 – Procedure Day
Friday, 12 September 2014: One Year, One Hundred and Sixty Four Days Old.
Ayla had her investigative procedure today, to check out her entire digestive system.
The procedure required Ayla to fast from 7.30am, so by the time Ayla went to get ready for theatre at 3.00pm she was hungry, thirsty and tired.
I went in with her, suited up in a white robe and a fancy blue hair net, and held her little hand and brushed her hair while she breathed in the gas and drifted off to sleep.
Ayla was under anesthetic for 40 minutes, while her gastroenterological paediatrician conducted a “gastroscopy” and a “sigmoidoscopy” which included a couple of biopsies and another full set of bloods.
Ayla woke up an hour later, groggy and a little upset with a bit of a cough and a husky voice from the oxygen tube. There was a few tears, but as soon as we met her in Recovery, gave her a bottle and sat with her in a rocking chair, Ayla quickly drifted back to sleep.
We were discharged at 5.30pm with test results due back next Thursday. The procedure went well but the doc seemed a little surprised he found evidence of digestive irritation, apart from that there was no kinks, twists or damage to Ayla’s insides.
We now also have to wait for our next specialist appointment, with a paediatric endocrinologist (ie: growth expert), scheduled for 15 October, and for Ayla’s chromosomal blood tests to come back in the next couple of weeks
Wednesday, 10 September 2014; One Year, One Hundred and Sixty Two Days Old.
Ayla was reunited with her Daddy tonight, when he flew down to join us in time for Ayla’s procedure.
Hubby asked that I didn’t say anything to Ayla about picking Daddy up as we headed off to the airport, but I did accidentily mention it to her yesterday and since then every knock at the door or sound upstairs has had Ayla pointing and saying “Daddy?”
We got to the airport early and waited at the gate. Ayla was restless by the time people started disembarking and she was wandering around excitedly, dodging legs and carry on baggage as they hurriedly headed for the baggage collection area.
I saw Hubby well before Ayla did, and he squatted down next to her. Ayla stopped in her tracks and stared at him; studing his face as if to work out whether he was real or not.
Then it clicked. Ayla ran the last two steps towards her Daddy and threw her arms around his neck, refusing to let go. Ayla kept looking back at me, smiling, then patting her Daddy’s face as if to say
“Nawww Mum! Look! Daddy’s actually here!” – so cute.