A year since a terrible day

Wow two months have flown by.

It is amazing having our family together. Mother’s Day, birthdays I have never appreciated having all my kids together quite how I do now.

The last three to four weeks have been tough, the girls got colds and we were very excited when Ellie got through it at home. This was followed by Ellie getting two more teeth (they have 8 each now), this flowed into the girls and I getting a nastier virus.

This virus resulted in 4 doctors appointments and 1 hospital admission in 3 days. Ellie and I were back at Randwick for 4 days and that was plenty (she was able to stay on low flow just with a little more oxygen at times) – how do people spend longer in hospital?!?

We have been back home for two weeks now and she is doing amazingly well.

 

 

OK I’ll be honest, I wrote the above a week ago. I was finding it difficult to write – I’m not sure why. I think I wanted it to be special or make an impact and I could find the words. One year ago today we wrote a blog after not sleeping all night, after being told our youngest child was going to die. After messaging parents and siblings all night with any tiny update. In perspective of this it isn’t hard to write a blog with meaning.

One year ago the girls weighed 3.2kg and 1.8kgs, they currently weight just over 10 and about 7 (Ellie lost a bit when she was sick in hospital recently).

One year ago Ellie was unable to have anything orally (even via NG), we have only needed to use Ellie’s NG one in the last 3-4 days. It takes her a couple of goes to drink a bottle sometimes due to fatigue (I assume), any milk she is leaving in the bottle she is making up for in solids plus some.

One year ago I was terrified Hannah would be missing a part of herself and I knew we would never be able to fill that void. Now we have to stop Hannah pulling out Ellie’s hearing aides, ripping off her oxygen and then laughing and constantly sitting on her less mobile and significantly smaller sister.

One year ago Ellie’s ventilator settings had to be set so high in an attempt to keep her alive that it permanently scarred the outside lining of her lungs meaning every breath is like blowing up a balloon for the first time. (the scar tissue will never go away, but as she grows the new tissue will one day be larger than the scarred tissue – lungs can continue to grow until you are in your teens). Despite this Ellie is breathing without any oxygen support for up to 2-3 hours a day (longer if we forget to turn it back on) and we are working up to 4+ hours a day before our next respiratory appointment later this month.

One year ago there were questions around Ellie’s intelligence being compromised due to the extended time she was deprived of oxygen while sick, also a severe developmental delay. The amazing physio at Sutherland Hospital and fantastic early intervention speech therapist (hearing) are both astonished with her understanding, communication skills and intelligence (she can be quite cheeky). She is assertive if she doesn’t want to do something and has already pushed Hannah over a couple of times after she sat on her lap. She is starting to steal toys back off Hannah and knows what she is ready for! An example of this is me giving Hannah a peanut butter bread roll to eat and I turned away only to look back and seeing both of them then munching on bread roll. Her development is delayed especially compared to her sister who likes to stand up in random places (on pillows, on the lounge, over people’s leg and also on a flat hard surface – if there is nothing fun to stand up on. She is taking steps when people hold her hands. Ellie once again shocked her physio (I know health professionals seem to take a while to get onto the Ellie doesn’t fit the mould bandwagon) when she actually improved between appointments despite being sick and admitted into hospital. I’m told the biggest factor in her developmental delay is the fact she spend a year in hospital and a lot of that time in bed. She is getting stronger everyday, she goes backwards when she is on her belly, she can hold herself up when she is put into the all fours position. She has learn to transition from sitting to her tummy. She is standing when holding onto her activity table with only a small amount of assistance.

One year ago we didn’t know what the future held. Our current reality it lots of hugs for Mum, mess EVERYWHERE (Hannah enjoys empty shelves, drawers, boxes and then dragging everything around the house). It is busy and amazing just like I hoped it would be. I don’t recall hoping I wouldn’t get any sleep…… between the late and early feeds and the girls especially, the boys occasionally waking up through the night we are pretty tired (our long weekend includes indulgent sleep ins (for me – I have another cold) and much needed day naps for Matt who is incredible despite the chaos, the sleepless nights and working full time.

I think I have covered everything. Hospital feels like a really long time ago and I am looking forward to it feeling further and further away.

Something I forgot, we still have anywhere between 1-3 appointments a week, our record is 7 appointments in 5 days – we had to reschedule a few after Ellie’s hospital admission.

I’ve started reading a friends blog documenting some medical issues they are going through. I think I finally have some perspective of what it is like to wait and see and read what happens each day. It is strange being on the other side thinking of the things that weren’t mentioned or what is being written could possibly mean for them.

I will leave this here, for those that fully understand what it is like to be a warrior.

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Thank you for being so supportive.

*Deb

Poppy ran another half marathon for us – who wants to run with Mum and Dad next May?? 7, 14 or 21km!

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Hospital babies think specimen jars are the best toys

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Sick babies get to sleep next to their Mumma

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Kids Hospital, Randwick ED before she got a bit sicker.

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4 straight days of one on one with Mummy and 24hr hugs.

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Feeling better again, time to come home.

Long time no blog!

It is hard to believe that it has been 4 weeks since we brought Ellie home from the hospital! Life has been an absolute whirlwind since bringing her home.

Progress – Ellie is doing fantastically. She is drinking more and more milk on her own, her current record is 85mls (a whole feed is 165). She is breathing really well and even managed a whole night without oxygen in the first week (we forgot to turn it on!…she was rather tired though). She is probably the best sleeper of all of our kids over night. Her development has been fantastic since coming home. She sits up on her own without any difficulty and has started to become almost as ‘grabby’ as her sister. We have been told her ‘rocking’ is a sign she is keen to move, but she is still a way off crawling. Meanwhile, we are desperately trying to tell Hannah that she doesn’t need to start walking yet, but she has other ideas and is pulling herself up on everything possible.

Family Life – Life is a bit of a circus in our household. Twins, 2 older kids and Ellie’s medical requirements make an almost full time job for two parents, but we are starting to get a handle on the routine….just with very little sleep! Ellie absolutely adores being home. She smiles and giggles all the time and is so happy just to be here. She loves watching her brothers play and interacting with Hannah away from a hospital bed. Nate and Hannah have a sibling romance going on and can’t get enough of each other, and Levi has responded by deciding Ellie is his favourite and has become her best advocate (‘What about Ellie’ is a common phrase to come from his lips). It is absolutely beautiful having our little clan all together, but the moments to actually stop and reflect on this miracle are few and far between at the moment.

Challenges – On our first week home Hannah pulled out Ellie’s NG tube. We had looked away for all of 10 seconds and looked back to find both girls smiling and Hannah playing with the long yellow string that had magically come out of Ellie’s nose. Deb and I had to choose between going back to the hospital, or putting it back in ourselves (we were told not to do it until we had done 3 under supervision). We both felt fairly confident after seeing it done dozens of times in the hospital, and we decided to give it a go (we had also done it once each on our last day in hospital).  Ellie was very brave and we managed to get it down without too much fuss, the biggest problem was trying to fend off Hannah at the same time who was balling her eyes out and trying her best to wrestle us and help her sister.

Where too from here? – Ellie is currently fighting off the family cold, but so far is doing well with it (we were told to expect a trip back to hospital, even for a simple cold). When that is sorted out they will look at slowly weaning her off the oxygen. We also need to get her oral feeds increased so she can one day lose her NG tube. There are no fixed dates on this, but so far the progress is pleasing. We also need to work hard to keep her physical and mental development moving along. Most weeks we have one or two appointments for her hearing, early intervention, physio, occupational therapy, paediatrician, feeding clinic, respiratory and sleep team.

While we don’t miss being at hospital and regularly blogging, we do dearly miss all our friends and supporters who helped us so much through the first year. You will never be forgotten and will always appreciate you and hopefully when life settles down we can do something with you other than ask for help!

*Matt
I’m in charge of adding the baby spam.

* Deb

Feeding time

I ❤️ being home!

Mummy let me sleep in the lounge room with her (we are quickly discovering what princesses our little girls are)

Ellie’s highchair came in a box!!

The girls beautiful hospital friend gave them one each of these phones, they are still fought over….

Swinging is SO fun, the hospital should get a swing for sure!

It wasn’t me…. 😬

We’re so funny!

#twinlife One sad in carrier, oxygen on my back and other twin in my arm. O yeah and one hand to take the photo! 😂

Yay! Someone learnt to bring food to her mouth!

Tired Mummy = girls in sleeping bags. Yes Hannah is standing up…. I think it was in the morning one day.

New tape trial. I look good in pink! 💕

And one from today’s outside time. Matts hand is on Hannah and Ellie still loves the swing.

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.

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……….

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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 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…..