Day 229

Hi everyone, I’ve just gotten home from work and found Deb and kids fast asleep, I think it was a big day.

All is well and we will double update tomorrow.

Matt

Day 228

Ellie had a little bit of a rough morning until her daily vomit and poo. Which she conveniently did right when I had to leave for doctors rounds. Don’t worry she got me back during her bath….

Yesterday Elle learnt a new trick. She would dig her heels into her mattress and then push and wiggle her head so that she can get to the top of her cot. Unfortunately she didn’t show me this today, however she did roll from her tummy to her back a few times for me!!! It was so exciting. The nurse two beds away looked up to see what was happening I carried on so much. This is a great step for Ellie’s development. I’m just hoping now she can stay on high flow and keep showing off. She was so much happier today than when I last saw her on Friday on resmed.

Ellie has also been sleeping better which means Mummy has more awake time. Today we did physio (tummy time neck strengthening exercises, sitting up holding her own head), wenread a story, had some hugs and a bath. It was really nice.

Busy day ahead tomorrow. It will be a quick 3 hour visit with Hannah and Levi. We should be meeting our volunteer Granny tomorrow – hopefully she will stay with us for our whole Children’s hospital journey.

*Deb

 

Looking forward to getting my purple and blue hearing aides on Friday, just like my lion.

 

Mummy, What is on my head???

All wrapped up after my bath!

Day 227

It really is amazing what Ellie is doing atm. Her ‘small break’ from her breathing support yesterday has now lasted over 24 hours. She is still currently on high flow, and while she is being monitored closely shows no sign of needing to go back to the resmed mask.

We are very aware of how quickly things can change but her turn around is incredible. A doctor today warned me that if she keeps this up for too long she is in danger of moving from intensive care to a standard ward (that is rather scary for us after 7 months of ICU).

The next week will be very telling. Ellie will have to prove she can handle high flow long term, still put on weight as well as get through her immunisations on Monday.

It has been a little difficult celebrating Ellie’s unexpected burst of improvement as two bubs right next to her are having big struggles at the moment. We can only pray that they have as much support and grace as we were given when Ellie was in a similar circumstance.

*Matt

Day 226

Today was a daddy day and Ellie was in fine form. She had been upset and grizzly the previous night but shortly after I visited she pooed and vomited and felt a lot better.

We had a great amount of up time and chats, and then she had a great big nap on my lap. I then popped out to have something to eat and came back to find Ellie without any breathing support on! The nurses will do this for short periods of time to give her head a rest from the mask. Well, Ellie decided this was a great thing and lasted just over an hour without any breathing support! (this was rather amazing for a girl who was close to being intubated on Saturday when she fell ill).

She impressed the doctors so much that they are currently trialing her on high flow! If she gets tired they will go straight back to her normal support but it is safe to say she has surprised everyone with how well she is going today.

So to celebrate, for the first time ever we are sharing some videos of Ellie with you. Hoping it gives you a good sense of how amazing our little princess warrior is.

*Matt

p.s. one of the Videos catches Ellie smiling, which is quite a rare thing! Enjoy.

No that isn’t Hannah, it is Ellie having an impromptu photo shoot while enjoying mask free time.

Day 225

Wow two days worth of updates, lets see. Well the girls are both still super cute. Ellie did a 15min physio session with no breathing support yesterday morning – needless to say she slept the rest of the day. Her pressure went down to 6 today (it was up to 8 over the weekend with her cold), she has also been in air 21% for two days now (it was 30-35% on the weekend). She has been sleeping a lot, but it I had her memory foam mattress I probably would be sleeping a lot too. She seems to be improving everyday – cold wise. Just a lot of saliva left and that could be due to teething or the last remnants of cold. Yesterday she tissued another cannula so her last two doses of antibiotics were a different oral one. 3 cannulas was enough.

Hannah showed signs of a cold starting today so the girls were kept apart. Tonight she is very grumpy and snotty so I would say it was a good call. Here’s hoping Ellie doesn’t catch it again.

Ellie rewarded me with a beautiful smile session this morning – I didn’t manage to capture the best of it but got one pretty good photo.

Any suggestions for retrieving photos off an iphone – the touch screen and power button don’t work (I can see the screen but doesn’t respond to my touch). Itunes wants me to verify it (because I updated the software on my phone).

*Deb

Day 224

Debs is out at Randwick tonight and her iphone screen isn’t working (which means she has no internet).

She will do an update tomorrow, but Ellie seems to have had a mostly good day.

*Matt

Here is a picture she sent me earlier today.

Day 223

Well it was a pooey sort of morning this morning. Both girls were overly compliant when i remembered I was meant to get a stool sample to the NICU research team. The girls had their growth and development clinic, which the doctor and physio came to the CICU for. Hannah was great, I’m told most ex 26 weekers are in about the 25% percentile for development, Hannah was in about the 50th – except for her tummy time moves she was a little higher. They were very excited about added her to their statistics!

Ellie at the best of times doesn’t really enjoy waking up ( Hannah wakes up smiling) Ellie closes hers eyes and pretends to keep sleeping if you try to get her attention. So when they woke her up to assess her – let’s just say there is a lot of her Aunty Lou in her! They decided to just let it go and check her out properly at their 8 month corrected check.

Ellie was tired today. She had bloods taken, was woken for her assessment and then they had two attempts at inserting a new cannula (the old one tissued already), unfortunately both failed. They are hopefully attempting again now (or I assume 10 minutes ago when Hannah was crying out).

Ellie is now 4.38kgs, that was after 3 poos before the bath and one in it….. She is looking better than when I saw her on Sunday – she is still just tired. She had a beautiful nurse all to herself today (well herself and Hannah) and was very well doted on.

*Deb

Day 222

Ellie was a very clever girl and was looking much much better today for her Daddy visit. She was alert and happy to chat and also had a nice big sleep on my lap. She has recovered from her cold remarkably well and is already back down a pressure level for her breathing support. This is very impressive for a sick bub who the doctors thought would need intubating on Saturday (when she first got sick).

She still has such a long way to go but today she showed us how far she has come since she was born a fragile 695 grams.

Nothing too big to report. They continue to give her laxatives for her bowels, blood thinners for her clot, they are constantly playing and experimenting to find the best volume for her feeds, and the discussion for hernia surgery continues to be put off for now.

It was a very busy day in the ICU so Ellie chose a good day to not need too much extra attention.

Hey Dad, haven’t seen you for a whole week!

Day 221

Sorry totally forgot. I was VERY busy doing this……

Nate and Hannah are fine just sneezing. Levi, Matt and I are fine just tired. Ellie has a cold 😔

She is acting like a normal baby with a cold pretty tired and pretty miserable when the panadol wears off. I just rang she is getting hugs with her nurse. Unfortunately her cannula just tissued (can’t be used anymore), so she will have to get a new one. Due to her shady infectious past she will have to remain on antibiotics for 5 days.

Hannah is drouling a lot again so there are some teeth moving around also, it’s harder to tell with Ellie but her gums have all the same bumps and lumps as Hannah’s…….

*Deb

Hospital days.

Day 220

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Nate was being sick for about 6 hours last night. Hannah and I got out of the house pretty quickly.

Ellie didn’t have a good night either. Her breathing support is back up to where is was 2 weeks ago. She has also had high temperatures and is on antibiotics. They suspect an UTI or chest infection.

I arrived about 2pm (wanted to make sure we weren’t going to get sick) and Ellie has slept beautifully since I arrived.

*Deb