Archive | June, 2012


28 Jun

I am so pleased to be able to tell you that Matilda will have a healthy baby sister in December! We are a little bit in shock and still processing it all but so very thrilled. Thank you all so, so, so much for your support especially over the last couple of months. It feels like now we can finally take the pause button off.

More when I am a bit less all over the place!

Huge love. Xoxoxo


Monday Update

25 Jun

No results yet but we have been kept busy enough to not be stressing out about them too much.

No vomit! But we have had a few dramas with the new j tube. Because it is such a slow feed over such a long period of time, it tends to get blocked very easily. The first time this happened, I was very panicked and called the hospital straight away. The nurse I spoke to wasn’t particularly helpful suggesting that we would have to come in and that Tilda would have to have X-rays to find out what was going on. But then I spoke to the gastro doctor who had a different solution.


Yep. Coke is the answer! Turns out it is very effective at unblocking feeding tubes. Slightly unnerving to think what it is doing to our insides.

We have had a few more issues with it and it will need to be looked at but at the moment, feedings are going ok.

The best thing about having the new feeding button is that finally, Tilda was able to swim again. This is something that she absolutely loved. There was a part of me that was concerned that she wouldn’t enjoy it as much as she used to but there was no need for my concern. As soon as she hit the water, she did not stop smiling and laughing. An absolute joy!

So things are ticking along. Trying not to think too much about results. Trying not to get too panicked about either outcome. Our mantra of taking each day as it comes is working very well for us right now.

Thank you so much to everyone for your kinds words and support throughout this time.

We are home!!

17 Jun

Just a quick note to let you know that finally, we are home! We had two vomit free nights in the hospital so figured it was a safe bet to come home and start trying the new regime here. Seems like the new medication has helped as well as a slight adjustment of feed times and speeds.

It is great to be here!! We will keep you all posted through the week and of course, the big news when we receive it.

Thank you so much for all your love and support.


Further updates

15 Jun

I feel very rested after a very good night’s sleep at home last night. My procedure went very smoothly, a little bit painful but not too bad. We got to see bubs which was very nice and from that side of things, everything looks very good. We won’t expect the results until at least the 27th June so a bit of a wait ahead.

Plenty to keep our minds occupied with Tilda still in hospital and still vomiting. We came back to the hospital after my ultrasound and were immediately taken downstairs so Tilda could have one too. They wanted to check the position of the Jtube and make sure it was in the right spot. Unfortunately as she was in the middle of a feed, they were unable to see it so after fasting from 3am this morning, they did another one at 10am. And still couldn’t find it indicating that food is not moving through her system as fast as it should be. Whether this is the cause of the vomiting is unclear, we have not yet had a proper conversation with the doctors. Who are quite elusive. And frustrating.

There is a possibility of a new medication that might be able to help but we are waiting approval from her neurologist as it may interfere with some of her anti-seizure meds. It is used to help move things through her system.


Ok, the gastro team have just visited and we now have approval for the new medication which we will start straight away. We will also resume her feeds at a slower rate and take it from there. There is still no concrete answer to why she is gagging and vomiting but let’s hope this new med will help her.

Thanks to all for your thoughts.


Quick update

14 Jun

Thank you to everyone for your continued well wishes and good thoughts. After a slightly better afternoon and evening yesterday, unfortunately Tilda has had another couple of vomits overnight. All bile so at least she is getting some nutrition albeit a small amount, 400 ml from 4pm yesterday to now.

During the afternoon we saw a few of her doctors and her dietician and had come up with a new feeding regime to see us home. Clearly there is something happening within her stomach so instead of doing the three smaller feeds gastrically and then a longer slowly feed through the J tube, we will only be doing J tube feeds. As J tube feedings (straight into the intestine) have to go slowly, this means that she will have to be feeding for 18 hours a day. We did a plan where most of this would be overnight leaving her days free for her school activities, swimming etc.

It seemed like a good plan but the overnight vomits have now raised some concerns. The whole point of the J tube is to reduce the risk of her aspirating in her sleep. Clearly as she is still throwing up in the night, we either need a new plan or even better we need to figure out why she is vomiting and make it stop.

I haven’t seen any doctors yet today so will wait to see what they say when they make their rounds.

Happily, and inspiringly, Tilda continues to have a smile which makes it all far more bearable.

It is also a very good distraction from the upcoming procedure this afternoon which I have barely thought about. My beautiful sister will be looking after Tilda for us while we are there and then Simon will take his turn to stay here the night so I can go home and hopefully have a good rest.

I will update again with any further news.


Hospital update

13 Jun

Well, I am certainly glad that I insisted that we spend the night. The surgery itself went well but it has been a very hectic night. Tilda started vomiting bile at about 7:30 then developed quite a high fever coupled with lots of seizure activity. Poor little mite was not at all well and looked miserable. Even Dora failed to distract her so you know shr was feeling particularly yuck. She was given panadol and nurofen as well as some IV fluids. Her rescue med – midazolam, was also administered which has in the past helped the seizures but sent her quite hyperactive. This time, it had the desired effect and she finally settled down to sleep at about 11:30.

They did a chest X-ray and took some bloods to see if they could figure it why she had a fever but everything has come back fine. Happily, she slept through both the X-ray and the finger prick.

Her feeds were started at about 1:00am, very slowly into her new J tube which bypasses the stomach and goes straight into the intestine and they gradually increased the speed. This stopped at about 6 this morning. Unfortunately, she has had another vomit which appeared to be all bile. The good news I suppose is that she has kept her feed down. She has had another small sleep and I am pleased to report that Dora has returned to being a brilliant hospital tool and Tilda is looking much brighter.

I doubt we will be going home today. We are waiting for the dietician to come round to formulate a new feeding plan and also the dr to see what happens next in regards to her vomits. They could just be part of a bug she had had as she has been a bit vomity at home as well. The frustrations of the not knowing.

I will update further when I have more to report.


A big week

11 Jun

After a lovely long weekend, we are heading into a pretty eventful week. Tomorrow, we take Tilda back to the Royal Children’s Hospital where she will have another general anesthetic and have her PEG changed to a GJ tube.
Unfortunately, the vomiting and gagging has returned with some vengeance so it is good timing and I am really hoping that this new tube will make a difference. We will be staying the night and getting used to the new routine, hopefully it will all go smoothly and we will be home by Wednesday.

Even with the vomiting, Tilda has been in really good cheer, with lots of laughing and kisses and cuddles. She is still fixated on Dora but I do sometimes manage to get her attention.

In other news, we are excited and scared and happy and nervous to let you all know that today I am 12 weeks and 2 days into my pregnancy. This is the usual time that these kinds of announcements are made and they are usually done with some relief that the ‘danger’ period is over. However, in our situation, this is not the case. This Thursday, I go into the Monash Medical Centre to have a Chorionic Villus Sampling procedure. I go in to find out whether Batten Disease takes even more from us. It seems like it will be relatively straightforward, and only take an hour or so.

We then wait.

Results can take up to two weeks. In my head, I have gone through each scenario a million times or more and can hear the emotion of the genetic counsellor as she says the words either ” I am so pleased to tell you…” or ” I am so sorry to tell you…..”. We are prepared as we can be for each outcome and have made our decisions, incredibly difficult as they are.

We can’t wait for it to be over. I have been waiting for this Thursday since finding out about the pregnancy over 7 weeks ago. You may or may not have noticed my decline in posting since that time! And of course, we can’t wait to know for sure whether this pregnancy can at last be celebrated fully.

Team Tilda has proved itself to be a formidable force to be reckoned with so we ask for your good thought both for Tilda tomorrow and for Thursday.

Much love


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