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 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 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 320 – Ellie GRACE

When we were finalising names for the girls, we had the combination Hannah Grace and Ellie Rose. When we realised how much of a struggle Ellie was going to have, we switched the middle names around so she could have the namesake of Grace.

“…..GRACE is favour, the free and undeserved help that God gives us to respond to his call to become children of God…”

And it has often been mentioned how Ellie has lived up to her namesake.

Deb and I are often asked something along the lines of – ‘how are you able to handle this and keep going?’  The truth is, we don’t know, we certainly haven’t trained or prepared for what life has thrown at us, but, still, we have been getting through each day. It definitely feels like Grace. The support we have received in many many ways has been freely given and certainly not earned, and it has allowed us to respond to our call to be parents. Thank you to everyone who have been providers of the grace we continue to receive.

Ellie has had another fantastic, energetic and demanding day. At home, Nate has started year 1 and Levi will start preschool this week!

*Matt

p.s. As a close friend pointed out, Hannah actually translates to – Favour/Grace, so she didn’t miss out either!

Day 319

One thing that has astounded me about our girls, is their will to live. So often, there are times when we want to give up as adults and wish we could just disappear, but the girls are the epitome of ‘keen for life’. Hannah is desperate to absorb anything she can and she grabs at everything in reach….literally. She also is desperate to smile and chat with whoever’s attention she can catch. Ellie is equally as desperate to watch everything she can and will twist around twice just to watch what the nurses are doing around her.

If you believe in a creator God, you would have to say ‘good idea’ to the fact that babies have this eagerness to help them get established in this rough world. It is a shame we can lose it at times when we get older. So many people are invested in the journey of these two little girls and maybe part of the reason is because their ‘never give up’ attitude inspires us to not give up ourselves. No matter what life has thrown at them, the girls have stepped up to the challenge and grabbed it with both hands (and have the battle scars to prove it).

Today, Ellie’s challenges are much smaller, but she is still tackling them with the same enthusiasm. She is surprising everyone with how well she is eating solids, her visits outside have just been approved to be twice daily, and she has worked out that if she holds tightly onto the hands of visiting nurses, they will stay longer and give her more attention.

Thank you Ellie and Hannah for not only inspiring your parents, but also inspiring the amazing throng of quality people that are journeying with us.

Day 312 – Out of our depth

Ellie has been great this weekend. A lot of work and super grumpy about her tooth that has finally come through, but she is communicating and interacting more and more each day. She handled 25 minutes off her high flow beautifully today, and seemed upset when I connected her back to the wall.

————————————————————————–

A song that has encouraged us over this journey and has almost become out families theme song is ‘Oceans.’ The bridge lyrics are,

Spirit lead me where my trust is without borders, let me walk upon the waters wherever you would call me
Take me deeper than my feet could ever wander, and my faith will be made stronger, in the presence of my Saviour.

Tonight at church there was a message about how the disciples were pulled out of their comfort zone to follow Jesus and it got me thinking about this truth for us. Much of this year has been way out of our depth, but also out of our understanding. I really believe we have been held and looked after in a more than ordinary way, some particular things that come to mind are;

• The girls survived what we were told was a miscarriage at 10 weeks
• Ellie didn’t die from her triple sepsis infection
• Ellie’s PDA (hole in her heart) closed itself AFTER they had given up on the drug trial to fix it
• Ellie has not needed the Trachy or Fundo operations we were told to prepare for
• To date, there is still no evidence of the two hernia’s that were meant to be operated on before we went home
• We were given such a long list of expected disabilities and, so far, all that has been picked up is Ellie’s hearing loss
• Hannah’s development is amazingly above all expectations for a 26 weeker.

These are just off the top of my head, but the list of times we have been taken out of our depth and provided for goes on and on. (If I was to list the ways Deb and I have been supported beyond expectation, we could be here all night!) There are lessons we have learnt this year that I knew about in theory, but actually living through them has carved them into our very beings. I pray God can use us to share the gifts that have been taught to us when we come back from the choppy seas and can continue sailing forwards.

Sitting on Daddy’s tummy

Fun outside in the sun

Ellie refusing to perform for the camera. Was eating beautifully before I pulled out the camera.

Day 311 – today’s catch up

It was so great to see Ellie again for a Daddy day today. We missed out last week because of the family holiday in the city, so we made sure to make up for lost time. I, like Deb, was shocked at the size of Ellie. She is such a big girl now, and this was proven when I arrived to find her in one of Hannah’s outfits and it fitted her nicely. Her development has come on in leaps and bounds and she is quickly catching up to her sister, fuelled by her incredible determination.

I remember one of the bigger pressures I felt was being warned that Ellie would more than likely encounter several sever disabilities if we continued with the pregnancy. While this obviously did not turn us off, it did weigh heavily on my mind. Today, I was amazed at how ‘able’ this little girl really is. Her only currently known disability (her hearing) hasn’t held her back at all. Today, one of the nurses noticed Ellie started smacking her lips when I put her in the blue chair close to her next bolus feed (when she is most hungry). She told me that Deb normally fed her yoghurt in that chair and it almost looked like Ellie was trying to tell us she was hungry. Without fail, 30 minutes before every other feed today, she did the same thing . She waited until someone was looking at her and then she began smacking her lips. Most babies would revert to just crying until the parents worked out what was wrong, but our clever communicator has worked out something more efficient.

Dad, why are you trying to play with me in my feeding chair?….where is my yoghurt!

Day 298

As Ellie approaches 300 days, it seems apt to reflect on what an amazing miracle it is that she is in our lives. The current routine of having someone with Ellie 7 days a week (and 7 nights) is really taking its toll, and it can be easy to forget how much we longed and prayed for the opportunity to get to know this amazing girl.

Here is a list of things about Ellie we were never meant to find out about.

• We were never meant to know how stubborn Ellie is – when she wants something she will find a way of letting you know and kick/scream/hold her breath until she gets it. We are looking forward to seeing this translate to strength and persistence later in life.
• We were never meant to find out the Ellie is a real people watcher. She loves watching anyone who comes into her room whether it be a cleaner, nurse or doctor and she watches their every move with a deadly keen gaze
• We were never meant to enjoy how physical Ellie is. She loves to touch and be touched. It is rare for a nurse to check her heart without it turning into a hand holding session as she grabs their finger and holds on for dear life. With the exception of when she is super grumpy, she never fails to smile and giggle when she gets kisses on the cheek.
• We were never meant to see how amazing she is at communicating – she has great and creative ways of getting your attention and letting you know what she wants. Currently her favourites are pulling out her nose prongs (I am unhappy about something), throwing her head backwards (I want to do something different now) and holding her breathe (you better stop what you are doing right now!)
• We were never meant to know how brave she is – no matter how nasty a procedure or  situation she has been through, she has always just willing to pick up from where she is and keep moving forward. I know I would have given up 10 times over if I had gone through some of her challenges, but she soldiers on forward not worrying about the next hurdle.

We thank God for the opportunity to meet this girl and we are so grateful that we are on track to experience a whole lifetime with her.

Thanks again to everyone who is so faithfully supporting us through this marathon. Today, Ellie’s paediatrician said she would be home for her birthday. While this was more a hopeful plan than a medical diagnosis, it is still encouraging to see her progressing forward!

*Matt

‘Dad, can’t you see I am too busy for photos’

‘Ellie, you have to come home and try this. Big brothers are heaps of fun!’

My first post for the new year

I just wanted to share this with you all. I think it applies to all six of us as individuals and as a family. But it feels like it has been written especially for Ellie. How did they know breathing was so important and special for her?

I hope you all have a beautiful new year and get excited by every new day no matter how mundane. Everyday should be celebrated, especially the ones we would rather forget or wished had never happened. Mountains and valleys…..

*Deb (credit to Louise for finding it)

Day 277

I just got back to hospital after ducking out for Sunday night Mass with the family (otherwise known as the weekly 1 hour wrestling match with Levi and Hannah). Can’t wait for Ellie to join us one day and we can completely distract the entire congregation from what is happening up the front! It is the last week of Advent and we have celebrated the Advent themes of hope, joy, peace and love. Even though Ellie misses out on coming to church with us I think she still absolutely oozes those four themes. She has fought through so many obstacles and given us hope, she has the cutest giggle and brings joy to all the nurses who go out of their way to visit her, she has a peace that lets her totally trust her parents and those who care for her, and like all babies the thing she craves most is love.

Deb loves Christmas and everything that comes with it and the boys have inherited this from her. The Childrens Hospital is also unsurprisingly very much into Christmas. Today Ellie had a 15 minute nap which meant that I got a 10 minute nap. During this time a guy in a big red suit apparently visited and left her an awesome present. I am told this is just one of many Santa visits that happens, hopefully we don’t sleep through them all!

*Matt

Thanks Santa!

mmm, tasty bunny!