4 months on….. 21 months old (18 corrected)

So this is the third time I have started writing this blog… Not because I don’t want to share but because there is so much and happening and changing everyday. It was almost easier blogging daily, I didn’t have so much time to think about what I was writing.

Ellie is finally wireless during the day. She is an incredibly active little girl who is loving her freedom. She is climbing and crawling and even taking some steps. She is eating and drinking well. She still amazes her old NICU doctors and nurses who managed to get her through two bouts of sepsis, pneumonia and more resuscitations than anyone would like to count. At night she is on CPAP and needs to be reviewed to see if having her tonsils and adenoids removed will help her breath better while she is sleeping.

Two active one years olds, a 4yo and 7yo plus the appointments is BUSY.  We currently still see 3 specialist and will add another next year (two of those are shared between both the girls), Physio will be stopping but Occupational Therapy will continue as will weekly early intervention sessions. It’s easy to get caught up and dragged down in the difficulties and challenges of having young kids. People who spend 10-30mins with Ellie are amazed and in awe of her progress. People that spend a few hours with Ellie realise just how active and how utterly cheeky she is!

This time of year seems to being drawing more people to the miracle that Ellie is. I’m not sure if they are remembering that she was still in hospital last year or if it is just the season to search for hope. The more time that passes the better Ellie gets and the more I am coming to realise how much of a miracle she really is. Not just for surviving but for thriving. She is incredibly happy, she loves her new physical capabilities and expresses this through knocking down anything that is up right including the kids wooden chairs. She is clever and learning new things everyday, she still becomes stressed in the hospital and expects all procedures to hurt (it took a full 10 mins for her to realise the follow-up ultrasound she was having wasn’t going to involve pain (she started falling asleep after that). I can see the stark difference in her compare to Hannah. When I use to take them in to the kids hospital for their monthly RSV immunisations through winter Hannah would happily lie down and smile at all the nurse until the point the needle came in. Ellie saw two nurse and me – we would start to lie her down and she knew something was about to happen. There are still some doctors she is very compliant for when they want to listen to her chest and some that she screams at as soon as they get near her. Despite all of this and 12 months in hospital she is incredible happy and well adjusted. She causes just (if not more) trouble than the other kids. She pulls the boys hair (really hard sometimes) steals the other kids food and throws their plates on the ground. She is very enthusiastic about life.

Hannah had tonsillitis last week and rarely wanted to leave my side – it’s been a challenging week to remember what amazing miracles my daughters actually are. Then while driving in the car I heard the song Hall of Fame by Script and it reminded me that as challenging as Ellie’s climbing and energy levels are maybe it can show people that anything is achievable. People didn’t expect Ellie to live let alone be taking steps by 18 months of age (corrected). Determined is to subtle a word for Ellie, I hope her ability to constantly exceed people’s expectations helps someone else to not give up on their goals.

Another reason it has taken so long to write is because I wanted it to be extraordinary. I know Ellie existence is amazing but it doesn’t feel extraordinary when there are crackers all over the floor, a baby covered in hives on my lap (Hannah’s allergic reaction to her tonsillitis antibiotics) and general chaos. I know at this point my Aunty Julia will be reminding me I longed for a time when I could be at home exhausted with my 4 kids around me causing chaos. So my dreams have come true and let me tell you they are exhausting!

So rather than something extraordinary I will leave you with a project I am working on. I want to put together some blessing bags for Mums with kids in hospital. They will include a small bag, pen, notepad, tissues, chocolate, lip gloss and good quality hand moisturiser. All things I used and would have appreciated receiving. I’m going to ask people to sponsor a bag or part of a bag (bags are $25) so that I can put them together in January and give them to my social worker at the hospital to distribute. I’m hoping I can do this every year as a way to remember all the support and help I received during Ellie’s long hospital stay. If you would like to contribute to a bag please send me an email and I’ll give you more details

mattdebnate@gmail.com

We are so excited to be celebrating our first Christmas at home together (although we will miss the Wiggles and our amazing nurse friends).

We wish you all a happy and healthy Christmas. Thank you for all your love, support and prayers over the last 21 months.

*Deb

***I forgot to add the “swimming” cap is an especially designed hat to keep Ellie’s hearing aides in. She has partially damaged one hearing aideby chewing on it and thrown the other out of the car (it is being replaced today).

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Ellie is wearing a backpack to hold all the wires that are attached to her during her sleep studies. She has had 2 so far and has another book in for March next year.

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The giraffe CPAP that Ellie has to wear every night to bed.

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Just before her oxygen came off.

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“Helping” with the washing.

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Boxes are fun! They are also showing off their considerable size difference.

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Her first ever ride and she loved it. That beautiful smile stayed on her face the whole time.

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Hannah is seeming very grown-up these days and thinks she is 4.

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Hannah was sick and sleeping on me. I heard a funny noise and asked Levi to take a photo of Ellie, she was pulling everything out of the nappy bag and spreading it as far as possible.

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When we first got Ellie’s hat Hannah wanted to have a turn too. They both wore them all day, including to the shops.

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I was trying to get a picture of them in their “skirts”, they never stop moving!

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One very proud little girl who climbed up all by herself.

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Ellie is very excited that she now gets to go to Nate’s school assemblies.

 

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Another 2 months have flown by…..

And we still aren’t sleeping. The girls are on to getting molars and being jealous of each other.

In the last two months it has felt like at least one of us has had a cold the whole time – there are a lot of us though and it feels as though our family is growing the more mobile everyone is getting.

Mobility is a great and wonderful thing. Hannah has been walking for about a month now and is loving chasing her brothers. Hannah walking was a massive motivator for Ellie – after a week of crying everytime her 3 older siblings left the room without her she learn to go from sitting to lying down to sitting up again. Two weeks after Hannah started walking Ellie began to crawl. She is better than this video now much she looks so much like a miniature person compared to Hannah and is just adorable as she moves around the house.

 

It was organised by the hospital that we would have a carer come to our house to help with the three youngest kids. Sarah comes Monday to Friday and has been amazing especially with school pick-up and drop-off – but especially when Ellie gets sick and I am running around with her to various doctors and the such. Ellie got quite sick again last week and we managed to have a suction (think the little sucker you get with fess – but industrial sized, I always joke her brain will be sucked out) at Sutherland Hospital and a slight increase in oxygen at home while keeping in contact with her GP and paediatrician to keep her at home throughout it all. Due to the continued viruses that seem to be plaguing our family this winter Ellie is holding on to her low flow until at least Summer, regardless of how good her results are. We have however been able to get rid of Ellie’s NG.

I started this a few nights ago – how did we ever write every night??

More and more I am wondering how we did what we did. The support we had was a big factor, but wow the full reality is starting to set in. There is a poster I made on my kitchen wall – it was meant to be one of those vision boards – it has some quotes on it and I read them now and they have so much more impact. I just looked up the date March 30th 2017, Ellie would have been home for 2 weeks and obviously I was getting more sleep…..

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I focus on the ones I’ve circled red. Never forget where you have been. It is so easy to do, as the life we use to live seems further and further away, I forget that the ramifications are still here. 12 months in hospital isn’t just wiped away after 4 month at home. Courage isn’t having the strength to go on – it is going on when you don’t have strength. For 9 months Hannah was by my side. People actually asked me if she was premmie too….. Not many Mums of ex 26 weekers, cart their fresh out of hospital baby around with them to sleep in hospital beds and hotel rooms and apartments on the ground floor of convents. If someone now told me I would have to do that, I think I would probably laugh at them. Who would do that! Strength doesn’t come from what you can do. It comes from overcoming the things you once thought you couldn’t. There is my answer.

Today, Hannah said bubbles. Ellie tried to copy animals sounds in her own little way. Nate has rounded out 5 days off school with temps and the family virus and Levi is full of energy in a house of exhausted people. Not sure how strong I am, but man am I tired and I’m so incredibly grateful I have beautiful children that keep me up at night and pick up toys and put them in random places around the house and drag a cord 9 metre around and pull along anything in it’s way and whinge and give the most amazing hugs and kisses and smile and babble and eat and drink and play and love each other. I feel very blessed to have my amazing family and incredible kidlets.

*Deb

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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