Day 368 – Signing off for now

Writing our last regular post is somewhat bitter sweet. It was a similar feeling when we left the hospital. We are were elated to be bringing Ellie home, but were sad to leave so many good friends and supporters. The people who read this blog have also been a great support to us. Your prayers, encouragement and cheering has been a real source of motivation that has kept us going throughout the last 12 months. Thank you.

Ellie has been doing really well and has handled the transition without any major dramas. Her two big medical challenges now are to consume enough food orally to not need an NG tube, and to breath without any oxygen support (She is booked in for a sleep study in July to trial this).

Tonight, Ellie came to the 6pm Church service with us. Bringing her to Mass had always been a moment that I had marked in my mind as the end of the hospital journey. Most of the highlights from the journey that I will take with me are from the resilience and miracles that Ellie continually showed us:

• Making it to 26 weeks alive and kicking despite early predictions and complications in the pregnancy
• Correcting the small hole in her heart by herself after the drug trial had to be stopped due to her first bout of sepsis.
• Fighting off a triple sepsis infection that an adult would not survive (the night we were told she wouldn’t make it through).
• Not having an oral aversion despite her very late bottle and food intake (quite rare)

• Avoiding her tracheostomy by improving her breathing the day after we agreed to the surgery (our decision was made after multiple teams assessed Ellie). This was a very real prospect because they said she would not progress to low flow and would be on high oxygen support long term.

Thank you to everyone who has shared this journey with us, we will always tell Ellie and Hannah about the Village that rallied around and helped us raise them. – Matt

Ellie coming home is busy, but feels so normal. No fanfare or big happens, just a normal family together who have easily accepted that this is the way it was always meant to be. And wow it’s been a long time coming! I finished work in November 2015 due to pregnancy complications, coming off a miscarriage in August 2015 (Grace would have been due less than a month before the girls were born).

Que sera, sera

Whatever will be, will be

The future’s not ours to see

Que sera, sera

What will be, will be

Que Sera, Sera

I’m not sure I have a highlight as much as I know things will never be as they were (and not because we now have to extra kids). The six of us have been on a journey that has never been traveled before and will never be traveled again. It is unique and it is ours. We did not get through it alone.

What I hope to remember from the last, what feels like years, is the people, the community, the support. I want to remember the nurse who bath and fed Hannah while I was sleep deprived and terrified my baby was going to die. I want to remember my sisters coming to be by my side with less than a days notice because I messaged them and said I was scared to go to a meeting on my own. I want to remember the nurse who looked at me as I walked into the NICU, told me to leave Hannah and walk back out so I could have 20 minutes to myself. I want to remember the nurse who took Hannah when she woke at 530 so I could get an extra 30mins sleep after a bad night. I want to remember the nurses who told me to go and shower and take a quick walk while they bath both my girls. I want to remember the probably 100s of people who supplied 5 meals a week for us for 3 months straight, I want to remember the people who continued to provide meals for us over the last 9 months, I want to remember that my cousins came and helped us maintain our yard, I want to remember the people who gave us various gifts often when we needed them, I want to remember our families who endlessly took care of our boys and stayed with our girls when we couldn’t, I want to remember every little and huge thing our parents have done for us, I want to remember that 204 donations were made and that my sister was asked to talk about how to inspire people to donate, I want to remember that Roy has and is going to run 2 half marathons in honour of our girls (https://smh2017halfmarathon.everydayhero.com/au/roy-humphreys feel free to donate 😊), I want to remember all the friends I have made – with other patients and there families there is a bond that other people simply don’t understand, I want to remember the nurses I chatted to for hours on end, I want to remember the doctors who looked after, saved and cared for Ellie, I want to remember all the cards, emails and messages we received encouraging us to keep going, I want to remember how hard and scary and stressful it was, as well as how joyful, exciting and exhausting, I want to remember expressing 7 times a day and first hugs with my daughters, I want to remember not knowing if my baby was going to live or die and relaxing lunches at the pub laughing about NG tubes coming off.

What I needed was provided

I want to remember all of this and more because it has changed me, it has changed our family, it has changed our perspectives, it has made me angrier when people don’t do everything in their power to make sure their kid doesn’t end up in hospital, it has made me more sympathetic when you hear someone’s kid is sick, is has changed my perspective on what sick really is. It has made me more aware that although things made life easier they are just things, ultimately if your family is healthy and safe with food, any clothes and shelter nothing else matters. It has changed me.

Everyday for at least 7 months I have read the below quote, sometimes aggressively in Ellie’s favour, sometimes adding expletives to give it more attitude, sometimes in hope. I like tomthing of the fate character as being a bit of an over bearing bully and the warrior being controlled and strong standing up to this force and whispering, nothing more was needed. Ellie was known for doing the unexpected, people came prepared for Ellie to call the shots and change their plans. Ellie is my warrior and Hannah is her greatest advocate and motivator. Hannah is often over shadowed, however do not forget she fits into the under 28 weeks, under 1.5kg category. Babies in this category require additional hearing and vision tests, qualify for physio, speech therapy and OT – babies in this category do not normally look and act like Hannah. No way was being born small and early going to hold her back!

One last, and possibly insignificant thing to many, thing is I don’t want to forget the quotes that pulled me through and the songs that lifted me up.

*Deb

Where it all began…. crazy that this was only 7 weeks and 2 days before they were born.

❤️Hannah❤️

❤️Ellie❤️

 

 

 

Day 367

Two full days in and needless to say we are exhausted and need to get seriously organised. Last night we decided we would all go out this morning, we wanted to leave just after 9am. To achieve this we had to make a list of all that had to be done in the morning and a list of things that had to be packed – because we were out over a fed time, this resulted in 3 bags. Just to leave the house for 4 hours! Mine you being organised did pay off. We fed two babies (1 bottle fed, 1 bottle fed then pump fed), gave 3 medications, had one poo explosion, one milk pump mishap (we had to reprime – anyone who knows what that means will feel our pain), one easily fixed line occlusion, the boys played in two different play areas. The 4 older members all had lunch and we picked up the cot mattress and cot sheets (and mattress protectors, two days and we have already discovered two is not enough!) we left the house for. Also halfway from our car to undercover it suddenly bickered down so we all got a little wet. All 4 kids also had a bath (together, busy but cute) and my beautiful cousin brought around salad and taco mince so we got to have a really lovely family dinner together. Matt and I also retaped Ellie’s feeding tube (twice) and her prongs for the first time since we came home. Ellie cried, Hannah sympathy bellowed.

Ellie slept for a little over 1.5hrs this afternoon, the best sleep she has had since coming home. Everything is new to her and she hasn’t yet slept as well as she mostly did in the hospital.

Everyone is asleep now and Mum and Dad have finally showered and are ready to start the night. I say start because there is still one med and a feed to go, not to mention ‘sleeping’ with two babies, a three year old and a 6 year old.

Lucky we were excited to be together at home.

The next two weeks will be organising and decluttering so we can streamline our childcare processes and manage to fit in Matt going to work, Nate going to school and the girls appointments. I am so excited to try!! I wouldn’t trade this business for anything, it is just so nice being at home. If we can get through the last year, all of the above is going to be a breeze (compared to what we have already been through) – once we are organised!

*Deb

PS tomorrow night will be our last regular blog, if you want to keep up with our random comings and going we write about, you can subscribe and they will be emailed to you whenever they appear xx

One days worth of syringes, between the two girls.

“Hi” Hannah loves waving at everyone

Before we retaped but after we did a brown tape quick fix while out.

Day 366

Well in all the excitement yesterday we forgot to tell you all about something (almost) as equally exciting……

There were 204  blood donations made in the girls names in the last 12 months!!

Thank you to my incredible sister Helen and all those amazing people who donated!

A year of blogging wow! Some gift our family received were a heart like the one above with the most common blog words in it, I’m very fortunate to not have the word crappy in it – turns out I use that a lot, oops. Louise (another amazing sister, I have 3 of them!) made a video of photos from the time they were born until recently. It is really incredible, I sometimes forget how small they were and how sick Ellie really was. I will add them here and y’all really just want to see pics of Ellie at home anyway so I will add those also.

She is doing well, the move is a big adjustment, so she is needing a little more attention than usual (this is our home, but she doesn’t realise it is hers yet). Otherwise all is looking well. Thanks for all the comments

*Deb x

Yay, birthday presents!

Lunch time.

I can dance here too ❤️

Not use to my new room, I might just sleep next to you Mum x

Highchair boxes are fun!

365 Days/12 months/1 year…..and a 45 km trip…..

Today was always going to be a big day. Having all six of the Humphreys family in the hospital is never a small task. The boys were very excited to visit the starlight room, play in the toy room, and give out cupcakes for the girls birthday.

Needless to say, Hannah and Ellie received a huge amount of attention for their birthday. Some highlights included:

•  A present and personal serenading from three starlight captains
• A fully catered party with a dozen nurses (organised by the nurses)
• Visits from many of the doctors, nurses, midwifes and other professionals who have worked with the girls over the last 12 months.

That was a big enough day in itself, but something else also happened today……….

A blurry family photo at the end of a very big day.

Nate was most excited when we told him Ellie was coming home today, mostly because he had predicted that her birthday would be a good time to come home (I think we have a little prophet on our hands).

We are too utterly exhausted to fill in the details, but we are elated to finally have our girl home. All six Humphreys will be sleeping at Waterfall for the first time ever. The girl that wasn’t meant to make it out of the womb has left the hospital to start her life at home with her family.

Welcome home Ellie, we love you and are already better people for having you in our lives.

Love Mum and Dad

p.s. It is going to take us a while to settle in at home, and we know how popular Ellie is, but we ask that her fans give her a little time before any unexpected visits. We are requesting no visitors to start with, so Ellie can have time to assimilate and get use to the big world outside of hospital.

When she is up to visits, it would be really helpful to message Deb before you come. We are really looking forward to celebrating the year ahead, with all the people who have stuck so closely by us over the last 12 months.

Day 364

It has been a very busy day out at the hospital, so you are getting another special ‘blog via correspondence’ while Deb recovers. From what I have heard, they are very very impressed with Ellie’s sleep study last night. She is continuing to power forward and nothing is getting in the way of Ellie’s progress recently!

Even when they warned us of the difficulties of having our babies early, we never imagined that we would still be at the hospital for the girls’ first birthday. Hannah and Ellie are now quite legendary at the hospital, and I know it will be very special celebrating their first birthday there. The hospital is all Ellie has known and she has so many friends there, so it is fitting to celebrate at this location.

No photo’s today, but I am sure we will make up for it with some special birthday shots tomorrow.

*Matt

Day 363

OK maths smarties! Who are we only up to 363 days when one year is 365 days and it is the girls birthday in two days? We started the blog the day after they were born, day 1 as they were born in the afternoon so that was day 0.

Can anyone explain??

And yes I did forget and then got distracted.

Not a lot happened today. The pram was gone from just after 9 til about 330 so that restricted us a lot. I didn’t realise how much I was taking our walks for granted. We do now have a fancy (and removable) metal basket/cylinder for Ellie’s oxygen. It is going to make our walks much easier!

Hannah was a bit grumpy today. Both were a little more hard work than usual actually. Ellie decided to finish off the day by vomiting her entire 6pm feed, she did remind me that I didn’t burp her after her bottle though (25mls!)

Our room is starting to look fabulous, our hospital neighbour (her current stay is six weeks, but we actually met before Christmas) walked to the Prince of Wales end of the hospital with her Mum today (the furthest she has walked in a long time) and proudly presented the girls with the spoils of her walk, a beautiful, big princess crown ball, with the very apt words Happy Birthday Princess written on it. It meant so much to me and to know she worked so hard to get it and was so delighted to give it to my girls, who she is always so happy to stop and say hello too. This place truly does help you appreciate all the amazing things you have in life no matter how big or small they may be. In this world, our world, that was a huge thing, for everyone involved.

Download of Ellie’s saturation tonight and a cap gas in the morning (small blood test, often hard to get). Cap gases are normally done through a heel prick, however Ellie’s heels are so scarred from having so many they no longer bleed enough to fill the 0.5ml syringe. So they prick her little finger tips, let’s just hope it works first go!

Until tomorrow.

*Deb

I love my new bib and bunting Jenny x

Day 362

This song seems to come on when I get in the car and am heading out, I like it, it gives me a boost when I think I can’t be bothered (not to see Ellie, but the drive, the hard work at the hospital, etc). It will be my blog tonight.

Que Sera – Justice Crew

At the end of the day

Some you win, some you don’t

So I’m glad that I’m here

With some friends that I know

I hurt my knee at the end of last week and amazingly enough was able to get an appointment in the brief time I was home this week. Turns out the way I lower the girls cot sides has damaged the fluidy bits around my knee. (It was explained to me much better!). Anyway that’s not really the point, the point is it reminded me that I probably should give a little bit of time to looking after me. And in terms of the lyrics, it showed that today was a win because of friends. For some reason today was hard. The boys, particularly Levi, is struggling being away from his parents so much and I find it hard being home for such a short amount of time, yet I’m also yearning to see Ellie. A friend and an unexpected gesture (plus good news about my knee) made my hard emotional day a win.

Always there with a smile

Saying you’re not alone

I was overwhelmingly welcomed today by the nurses. As much as they love Granma they were pretty stoked to get an extra day of seeing the girls together.

Saying la la la la

Que será?

Whatever will be, will be. This reminds me of my Nonno. I’m not sure what he would have said in our current situation but he had pretty crappy lungs too so I think he would have had sympathy for Ellie. And told us to do what needed to be done. Whatever will be, will be.

Yesterday is history oh!

You gotta get through it (Hei!)

Tomorrow is a mystery so

Let’s just do it (Hei!)

So glad yesterday is history. You never want to forget it, but you don’t want to relive it either. I think it will take me sometime to fully comprehend this year and yet over it emotionally and mentally. The inability to sleep without exhaustion, the need to cry randomly (although mostly in the car), the images I see when I close my eyes – the memories that will never leave me (not all so good).

Tomorrow is a mystery, who knows what is will bring! Miraculous healings, our hospital neighbours release, a vision of Ellie’s future, unlike Matt is struggle with change. But all this has taught me to embrace the mystery of each day and hope it is a winner.

And even when the rain falls

You and I, will stand tall (Hei!)

No matter what you go through

I’ll never leave you

This is my faith. God’s embrace has been there whenever I have needed it and it has brought us through some pretty crappy weather, to these brighter days with our kiddies.

So you gotta be strong (Strong)

I think Louise found this quote for me as well as many others.

Live by the words of the song (Song)

Together is where we belong (Long)

Never stop dreaming

Keep holdin’ on

We can’t give up, we have to keep hoping. Holding on to faith, holding on to our kids.

At the end of the day

Some you win, some you don’t

So I’m glad that I’m here

With some friends that I know

Always there with a smile

Saying you’re not alone

Saying la la la la

Que será?

When it’s been a long day

Had enough, givin’ up it ain’t okay

We don’t care what the world say

We spread love it’s the only way

Wow, the amount of times I have wanted to give up, thinking or saying aloud. Can’t do this anymore, I’m ready for it to be over. And other days I think it’s only just begun….. but criticism and negativity are something I really struggle with. Positivity and love are my strength and I hope will be my daughters as they try to achieve all they dream of in life.

So you gotta be strong (Strong)

Live by the words of the song (Song)

Together is where we belong (Long)

Never stop dreaming

I regularly dream of a future with my grown kids, all having the amazing opportunity to pursue their dreams and succeed.

Keep holdin’ on

At the end of the day

Some you win, some you don’t

So I’m glad that I’m here

With some friends that I know

Friends we know and some we don’t. The girls have touched many lives and many people have embraced our lives and carried us through.

Always there with a smile

Saying you’re not alone

Saying la la la la

Que será?

We keep falling but the

World keeps spinning and I

Might stop winning

Just as long as I got you by my side

We keep falling but the

World keeps spinning and I

Might stop winning

But I know that we’re gonna be alright

At the end of the day

Some you win, some you don’t

So I’m glad that I’m here

With some friends that I know

Always there with a smile

Saying you’re not alone

Saying la la la la

Que será?

At the end of the day

Some you win, some you don’t

So I’m glad that I’m here

With some friends that I know

Always there with a smile

Saying you’re not alone

Saying la la la la

Que será?

At the end of the day

Some you win, some you don’t

So I’m glad that I’m here

With some friends that I know

Always there with a smile

Saying you’re not alone

Saying la la la la

Que será?

At the end of the day

Some you win, some you don’t

So I’m glad that I’m here

With some friends that I know

Always there with a smile

Saying you’re not alone

Saying la la la la

Que será?
Y’all probably want to know about the girls now, right?? Well there isn’t a whole lot to tell. I’m glad I was here this afternoon, between nurses, doctors, retaping and booking in appointments for this week it took me an hour to get the girls out the door – poor Hannah was strapped in the pram for much of that.

Ellie looks great! Both girls have decided they don’t like chicken (there was gagging vomits and spitting involved in their decision). Ellie so far has been a dream. Hannah the last few nights has been hard work getting her to sleep and is waking frequently (I hoping it is just teeth) she is quite happy during the day – so possibly she is just being a ababy confused by her two homes.

I hope you all sang as you read tonight.

*Deb x

The girls gorgeous birthday bunting that is getting heaps of compliments and has really brightened up our room.

The girls after we finally got to go for a walk.

Day 361 – Change

I have always loved change, and often find it difficult to stick to one thing, mostly because I get distracted and excited about something else. Ellie has been going so well recently that it has made me start to ponder what life will be like when she comes home. Contrary to my usual disposition, I am filled with mixed feelings. Of course there is the obvious excitement of having our family back together and seeing Ellie grow up in a home as opposed to a hospital, but there are also hesitations.

Mostly, I think we are going to miss the nurses, for two main reasons. Firstly, as capable as we are becoming at looking after Ellie’s sometimes complex medical needs, it is very reassuring being able to double check things with a trained professional, or even just having their reassurance that you are in fact doing something correctly. Secondly, we are going to miss them socially. Our days are filled with adults popping in to entertain and chat to Ellie, and many of them have become great friends. As much as I am reclusive and love my alone time, it is going to feel quite unusual being by ourselves at first.

Anyway, like much of our past year, we don’t have much of a choice, and Ellie is the one determining our path from here forward. It will be interesting to get some official reports this week to see how the experts think she is going on the low flow (to us she seems to be doing fantastically).

 

Day 360 – Sacrifice

When I came in yesterday for yet another weekend stuck in the hospital, I was feeling a little bit sorry for myself. Then one of the nurses came in all smiles because of some good news. The kidney transplant from one of the kids next door had just finished and was successful. The father had given a kidney to his son/daughter (I didn’t know the patient). Immediately, my heart went out to them. What a terrible situation, but at the same time an amazing gesture of love. All of a sudden, my sacrifice of time was put in perspective as I considered the physical and ongoing sacrifice this father had willingly made. This kind of thing happens semi regularly at the children’s hospital, it is a shame our news reports on mostly bad things when there are so many amazingly good things happening without us realising.

Sacrifice is more than losing something, it is losing something for a greater good. The times when I can connect to the greater good, in this case the amazing Ellie, then the act of sacrifice becomes so much easier to fulfil. Ellie is worth every cent of the million+ dollars that has probably been spent on her (before you panic, not paid personally by us) and even the time sacrificed beside her bed has been so special and life giving in itself. The past year is something we will never wish away or regret, it is now part of who we are and who we will be from here on.

Ellie is looking great. I took her up to the shops for the first time today (my first time) and I was considering what she must think of the hundreds of people busying themselves around the place. Nothing much will happen medically over the weekend, but she looks as bright as ever on 200mls of low flow.

She has stopped playing with the toys and has started trying to work out how to lift the whole A Frame.

 

Day 359

I didn’t forget I promise, just been caught up (messages, emails, social media). Anyway I had this great idea and reflection I was going to write about but it’s gone – along with the concept of 8 hours sleep in a row, funny how they go hand in hand.
Anyway on to important matters!

The Red25 group tally has had a computer glitch! We have no idea what our real tally is…… 195, 197, 199???? No ones knows! The only way to get an accurate count before Thursday it to email my gorgeous sister if you have donated in the last two weeks or if you donate in the coming 5 days! (No orations will be lost, they just won’t have the real totally before Thursday). Anyway a lovely lady from the Red Cross Blood Service is going to manually put them all into the computer for us!

Also if you have donated in the last 12 months (and haven’t already commented on FB) please email Helen your first and last name as she is compiling a list for the girls.

Her email is: Helen.nisevic@gmail.com

News today…. just that life is now boring without a pram. Engineering took it, they are going to try and do something so Ellie’s tank sits on the outside of the pram instead of underneath in the basket. I wonder why that is needed Hannah……

It will be gone again on Tuesday for 3 hours ☹️ She actually just had a bit of time off today (she can have 30mins a day) as they took her tank too. I will hang onto that on Tuesday.

*Deb

Hannah happy to be home this afternoon, back chewing on home toys.

Ellie’s 1st unmonitored sleep in her bed (my feet are finally free!)

The excessive amount of tape is due to Ellie ripping her prongs off and either playing with them, throwing them around her bed or chucking them onto the floor…. someone thinks they can breath…..