Month: November 2016

Day 259

Well after a very wakey day, Ellie had quite a restful day today. Popping her prongs out constantly overnight didn’t help either. Hannah thought it would fun to spike a temperature last night. She seems fine now after being irritable today so Dr Deb is putting it down to teeth (praying I am right, otherwise it is a virus).

The sleep team weren’t very happy with Ellie’s trace overnight. We all did agree it was most likely because of her prongs coming out. She will get another chance next week (we decided to not do it immediately and let her rest for a few days).

Sorry got distracted talking. I think that is it, I will try to find some photos.

*Deb

Day 258

Ellie was a little out of sorts today, she only slept for 40 minutes between 7am and 7pm. I can’t wait for the day I can pop her in the pram or car and take her for a walk or drive on days like this. The 40 minute nap was after she got her first taste of purees. She was a little skeptical of the spoon and the dietitian. Once I got the spoon she had a couple of licks and then when it was all over she rubbed her fingers over her messy chin and VERY happily sucked on those. This evening she was quite grumpy until she got some panadol and then still took a little convincing to fall asleep. Here’s hoping she has a good night (the sleep team are monitoring her again). My suspicion is we will have more teeth news soon.

Hannah is going well, her gums are still a little sore and she doesn’t appreciate Ellie getting any attention. Luckily she thinks she is a nurse and is happy reading charts with her ‘colleagues’.

Blood tests, sleep team assessment, physio and OT tomorrow – plus we will be trialing two two hour sessions off feeds. I will also remember to take some photos (the only one today is a blurry one of the girls watching Peppa Pig – only way to settle them both and I figure we can start the obsession early).

*Deb

Day 257

Ellie was looking great today and was happy to have visitors again. It is a bit of a slow time for her progress, but it is still so refreshing to go in and having to worry more about entertaining her and less about something going wrong. She is so strong and alert now and it is a lot of fun watching her progress.

She did lose a tiny bit of weight (100 grams or so) and now weights 5.185 kg but she has had a few things changed to her feeds (so she can grow taller and not just wider!)

We had great fun working through her new physio routine.

I have been feeling terrible all day because I managed to cut her little thumb while working away at her nails. The poor little thing already has enough jabbing and prodding without the unnecessary ones. I think she forgave me after a bit of whinging.

Fast asleep when I arrived

Hey, you weren’t here when I fell asleep!

Day 256

Well no too much to tell again, weekends are pretty quiet on the ward. Hannah pooed up her back/tummy and all over her clothes for the second time in two days. Ellie decided to milk the fact I felt bad leaving her this afternoon and cried and whinged if I didn’t hold all morning (she has been an angel since I left and got hugs and stories from her nurse, the one time she has been awake).

It is a nice little family on the ward, there are a few of us that help each other out (mostly seeing the dryer empty and putting clothes in for each other), but we take the time to chat and encourage each other and share our different journeys. It is really nice. I have an extra special friend in the room next door to Ellie tonight (we are non-hospital) friends as well – it was nice getting a sneaky pic of Ellie sleeping and knowing there are a few extra people watching over her for us when we are not there.
*Deb

I’m not sure what happened Mummy….

Elle’s hug fest.

Day 255

Sorry it’s so late….. I got distracted. However was distracted by dinner with a friend, which was nice – just a shame I seem to only be able to catch up when people’s kids are sick.

No news for Ellie today, she has gotten a little be cuter but otherwise is all the same. Hannah on the other hand got herself two brand new chompers!

*Deb

Mummy’s only solutions to stop two grumpy babies from whinging

New teeth for me!

Day 254

Not a big news day today. Ellie had one hour off her feeds today and will potentially go to two hours either split or together on Monday. No solids yet, that will start next week.

Other than the girls conspiring against me and starting to stir while there was a 4 at the beginning of the clock and pooing and vomiting on a student nurse (Ellie), it’s been a pretty normal, twin plus two boys kinda day. We even managed to squeeze in a school fair this evening….. not sure if I have said it here before but I have come to accept our lives are insane and that is now our normal!
On a side note many of our NICU and ICU friends are either home and thriving or progressing well. However there are a couple even we have left behind. Although their journeys have been shorter in many ways they are much harder. Everyone deals with these journeys differently, but everyone needs support. So as we try to support others as they to support us, we can’t do much more that pray for their precious kids. So tonight if you are willing I would ask prayers/good thoughts etc be directed to lungs, kidneys and hearts/windpipes. So that Ellie and two of her friends can meet up and play happily in the park in the future.

*Deb

Mummy look same same hearing aides. I love lions Raaaah! (Our little lion heart)

Chillin’ with Mumma (Hannah was asleep)

Day 253

Well I think the meeting went very well this morning.

The current plans for Ellie are:

The sleep team will review Ellie’s saturations each Tuesday night (we will get results for this each Wednesday).
She is to be weighed each Monday and measured (the real factor in improving her lungs) once a month.
Another impedence study will be conducted concurrently with the sleep study in two weeks time to see if the de-saturations are being impacted by Ellie’s reflux. Plus as a another look as part of the determination on a fundoplication or not.
As of tomorrow Ellie will have one hour off feeds (she is currently fed 24 hours a day), during this time off she will be allowed to start trying solids – this will begin with a smear of puree on her lips.
Her breathing support will be adjusted according to the sleep teams reports each Wednesday. My hope is that she will still come home on low flow while she is awake and CPAP while she sleeps/at night, as a maximum.
In the new year she will get her hernias repaired, this will be done in conjunction with a gastrostomy (a feeding tube that goes directly into her stomach). This is not being done until next year so that they can trial her on NG (directly into her stomach) feeds first and have those established before they decide were they put the gastrostomy (stomach or duodenum). Unfortunately a gastrostomy means she will need a general anaesthetic. However awaiting til the new year will hopefully mean been she is much bigger and he will be better equipped to recover quickly.

Thanks for all your support. We are excited about possibly meeting the Wiggles this Christmas, Emma might be able to teach us some Auslan!

*Deb

The girls have a Christmas present request, if you are able xx

Please share this with anyone and everyone – if they can’t donate they may know someone who can. It took so many amazing people donating to save Ellie’s life. Red25 group Hannah Rose and Ellie Grace.

Thank you so much to all those that have contributed to the girls 143 donations so far, plus the 5 people I know of who donated today!

Day 252

No news is good news…. nothing to report today. Big meeting tomorrow at 9:30am.

*Deb

Muuuum, Hannah is pinching me.

No I wasn’t, see – just holding hands.

We still love each other xx

Day 251

The sleep team are finally happy with Ellie! She is on high flow, 6 litres and 30% oxygen. That is less than 2 litres per kilos, so I’m hoping our feeding plans can still go ahead. All of this will all be sorted out at the meeting on Thursday.

For the first time on her life Ellie will start on formula that is made according to the tin! No extra scoops of powder, no extra oils, fats or proteins!! She put on 300 grams last week which is too much (if she puts on weight too quickly it will turn to fat and make breathing harder. She is currently 5.28kgs!! Now she just needs to grow into it (her height still isn’t on the growth chart).

*Deb

Day 250

Ellie had another great day today and was very keen to chat and interact. It looks like her next big meeting is on Thursday so if any medical changes are made it will likely be then. She has however put on a nice amount of weight (300 grams) and is sleeping well overnights which will both help her progress.

As promised here are some pictures from the Baptism yesterday. The hospital staff were so understanding and happy for us to do it on the ward.