May 2018 – hannahroseelliegrace

EDIT: Well I started this the week after the girls turned two (16th March), it’s now May….. I’ll do a few quick updates throughout the post marked with **

Writing this blog is definitely getting harder the older the girls get!

Wow! I have been on this journey since November 2015, that was when I had a very large bleed and was told my 9 week (gestation) babies would not have been able to survive.

Fast forward to March 2018 and I have two crazy 2 year olds, a 4 year old and a seven year old. So MANY miracles occurred for that to be possible.

It is only now that I am fully grasping that concept. It was predicted that one or both girls would die 4 times. Something or someone who believed in us and Ellie resulted in there never being a conversation surrounding withdrawing care (which had the potential to happen twice). It’s so easy to see now but so hard to fully comprehend. It all sinks in the most as to how sick Ellie was when we go and visit the doctors and nurses who were looking after her. She will laugh and play and run away (of all my four children the one that can’t hear me had to be the runner….. seriously!). They look at her and are amazed. I look back and have no idea how we did it, it was insane and if someone told me we would have to go through that again or if someone told me we would have to spend another year in hospital I’m not sure I would be confident I could do it.

We do not know what we are capable of until we are thrust into the situation.

Today the girls are happy, cheeky and driving their parents to insanity with their inability to sleep through the night or even coordinate their very rare sleep throughs.

Ellie potentially has a big year ahead, she is booked into have her tonsils and adenoids removed to try and improve her severe sleep aponea and grommets inserted to try and release the fluid in her ears so that her hearing aids can be set correctly. She just needs to hit 10kg before her scheduled surgery time. **Ellie is still 1.2kgs away from her 10kg goal, I’m thinking she is hindering herself by NEVER sitting still.

Hannah is hitting all her milestones and is pretty much caught up. She is talking and loves repeating people, she is signing, loves playing with her big brothers and basically thinks she is a 4 year old.

Ellie is saying dadadada which we are over the moon about, she also says quack. She is learning a few signs (she signs Dad as she says dadada) and it become proficient in signing finished! **Ellie now signs Mum as well! She says dadad as she signs it, but she signs both with context which is so exciting for us.

I find it hard to remember a time when Matt and I weren’t outnumbered 2-1. It is busy, chaotic, hard, exhausting, did I mention hard but I wouldn’t change it for the world.

Our appointments have settled down some what, we only seem to be heading to Randwick once a month. We have OT every 4 weeks or so, we see the paediatrician every 3 months. We are having sleep studies about every 3 months and see the respiratory consultant every 6-8 weeks. We are also having weekly early intervention at Waverly. So keeping busy but a little less than last year. ** We are actually having less and less appointments. We can go a few weeks with only early intervention, to be honest it’s left me at a bit of a loss after two years of dealing with huge numbers of appointments, doctors and allied health specialist.

Mild colds and snotty noses are still a major problem. Hannah is handling them quite well, Ellie is back on her oxygen, unable to eat as much, breaths very quickly and very hard requires very frequent ventolin and suctioning (which we can now do at home). It is basically 3 days to a week of monitoring, care and Matt and I getting VERY little sleep. I’m not particularly looking forward to this winter as she has already had two colds. It is very hard when the same virus is hardly even noticeable in our other kids.

BLESSING BAGS UPDATE

The blessing bags will be delivered next week, it was meant to be last month but we had 3 appointments (2 for Ellie, one for Hannah) in one day and it was too hard to fit it in. **These were finally delivered to my amazing Social worker Alison when Ellie had her sleep study in the school holidays.

Thank you so much for everyone who contributed, I was able to put together 27 bags and I’m so excited for those to be given to Mums who may be struggling while their child is stuck in hospital.

Special thanks to Aunty Julia and Uncle Doug, Mum, Nanny, Joan, Vanessa, Jen, Michael, Debbie and the amazing Church cleaning ladies, Anne, Michelle, Nanny, Kimbo and anyone else who is so appreciated but I may have forgotten.

One last thing the SMH Half-Marathon is coming up again soon. Matt and I were hoping to participate but it’s not really possible for us at the moment. However one of girls NICU doctors will be running, so if anyone would like to contribute to this amazing cause (Running for Premature Babies fund research and machines such as the NAVA machines that both the girls used). It really is a wonderful cause and a LOOOOOONG way to run.

Here is the link to sponsor: https://smh2018halfmarathon.everydayhero.com/au/tim-schindler

Until next year,

Deb and Matt

If you would like to catch some insights into our lives and enjoy an outlet I am trying, feel free to pop over over to myordinarylifebydeb.wordpress.com