Day 350

Ahhhh…. remember how excited we were to celebrate 150 days? That’s when Ellie was given her Nemo suit we thought would never fit her (doesn’t even do up on her now). She was on NAVA still recovering from her pneumonia. We had cake, presents, the boys came in. 150 days felt like such a long time and such a big achievement. Little did we know then what was ahead. Another 51 days in NICU, 5 weeks in CICU and the rest of the time less 6 days, in what feels like our home on C1South.

While we were on our ‘holiday’ upstairs, our room was thoroughly cleaned. We had also pulled down all our photos and rubbed off all our writing from the wall. When we came back it only took me a few hours to redesign. We have different photos up, more of a journey and reminder of how far both the girls have come. Our wall is now also covered in goals for Ellie to get her home, lists of outpatients referrals and appointment we will need to make, a schedule of who is with Ellie and when, as well as a food diary and the rates her milk is given to her at.

My favourite parts of our wall are the photos, Matt gave me an amazing one of the boys today. The 3 of them worked together so that I wouldn’t know the boys got a ‘family’ photo on Levi’s preschool photo day.

The other thing I love is our blood donation tally and the girls certificate for reaching 100 donations. I reread the Mammamia article the other day, in May last year we had something like 32 donations and weren’t sure if we could get 100 by their 1st birthday. Look at our tally now, only 8 more to go to reach double that number. 192 donations! Wow. That is almost 600 lives saved, because my amazing sister started a Red25 group and because my incredible daughters showed strength and courage through all their trials and blood transfusions.
Another busy day today, hospital noises meant Ellie and I were up at 530. This resulted in Ellie sleeping through her physio session – Hannah got to go downstairs for her session instead. Mum arrived for a day visit after this and took Hannah for a quick walk while the Matilda Rose speech therapist had a session with Ellie. After that Mum held Hannah while I ate, then it was crazy time with a cap gas for Ellie (2 nurses to do a finger prick and collect 0.5mls of blood), 2 physios came back to see how Ellie was, a NICU doctor had popped in to say hello, mum, Hannah and I were also in the room along with a screaming Ellie (the prick doesn’t bother her it is the squeezing and holding down that she hates). Anyway after that an exCICU friend who was back for the day came to visit, after the the three of us walked Mum to the bus stop and then had a wonder around the block and sat lounging in the sun in the fairy garden for awhile. It is the furthest and longest Ellie has even away from her bed for. It was almost completely successful…… it only took me 10-15minutes to realise Hannah had been determining how much oxygen Ellie had been receiving with her foot!! To give you an idea Ellie is currently on 800mls and she had been getting anywhere from 0 to 2.5 litres! Thanks to Hannah. 😂😂

Needless to say Ellie was exhausted and settled down quickly, Hannah fought a little harder before giving in to sleep tonight.

Well done if you got through this essay tonight.

*Deb 

Outside with Mummy and sleeping Hannah – she looks unwell because I think she has a bit of hay fever

Yep I just sit up now. I like being able to see!

The boys gift to me and a genuinely natural pose from my loving boys

Day 194

I stole Matt’s Monday, because I felt a bit off yesterday (a day of rest and I’m fine again) and he went in – plus school holidays means our routine is all over the place.

After not seeing Ellie for two days, she actually looked different. She wasn’t straining as much, her tummy was not as big and stretched and her oxygen requirement had come down, she was actually in air for some time overnight. I’m thinking most of this has to do with her new reflux medication, it quickens the digestive movement and one side effect is loose stools. However when you have two hernias and an intestine full of air from your CPAP those side effects are bliss. She even managed some very cheeky proper baby smiles today which were very sweet – one day I will be quick enough to capture a picture.

The big meeting planned for today was postponed til tomorrow. The gastro team have share what surgery they recommend and their plan for Ellie, the respiratory team have also had their say already. Tomorrow meeting will be (I’m assuming) quite a lively conversation between the surgeon, the neonatologists (NICU drs) and the intensivists (CICU drs) – wow spell check is hating all these words at the moment. One thing that is 90% sure, if Ellie only has her hernia’s fixed she will come back to the NICU for recovery where she is known before moving onto the CICU.

So if you are so enclined prayers at 11am for Ellie’s meeting tomorrow would be appreciated. And I will be sure to leave you all in suspense on the outcome….. (I will try to remember to blog early).

*Deb

Which one tastes better?? Better try both to see.

Play School show with my boys this afternoon.

Just an optical illusion, I wish she could hold her own bottle.

Day 178

Today was a shorter visit as we also had the boys family birthday lunch. Levi turned 3 yesterday and Nate turns 6 on Tuesday. I had a good chat to Ellie while I was there and she cried with impeccable timing when I told her she was missing out on her brothers birthday ‘party’.

Ellie was a little unsettled today and had a few clear vomits (the mask creates a lot of saliva in her mouth so even though she has no milk in her tummy she still manages to bring something up). Her NAVA levels were looking good so they gave her a try on Cpap and she was doing well when I left. This is just a small step down in breathing support but if she can handle it it will mean one less tube down her throat.

The girls made the headlines again today, this time it was the Daily Telegraph. I had to go to 5 different shops to find a copy for ourselves, I never realised how popular the girls actually were! (and I am sure it had nothing to do with the big scoop on the Bachelor….I am guessing that is a big thing at the moment?)

Click here for a link to the girls Telegraph article.

The reporter had planned to do the article on other families but they got excited when they saw twins in the same bed, and Hannah kept smiling at the photographer.

‘What do you mean they are having the party without me?’

 

 

Day 124

Monday means Daddy day at the hospital and this time I brought Hannah along with me to see her sister (she missed out yesterday). It wasn’t a great start, I arrived late which meant I had to get Hannah’s bottle ready and feed her during doctors rounds. Straight after the rounds Ellie fell asleep and her nurse wen’t on a break….then the girls seized the opportunity to test out their dad.

Ellie became unsettled and started pulling out her high flow prongs, which I continually tried to put back in with one hand while burping Hannah with the other hand. Ellie got more and more agitated and just as I tried to give her a dummy and a pat Hannah decided it was a good time to throw up all her milk that she had just drunk….over me and the floor (thankfully not over Ellie). In a few short minutes I had both girls screaming while trying to clean up the spilt milk in isle 3…..I mean level 3.

After several head turns and looks from other parents I finally got them under control and even got the help from some other nurses who weren’t assigned to Ellie but took pity on me. I finished the visit with a couple of hours of hugs with both girls. Ellie settled almost magically as soon as Hannah was placed next to her and both girls had a good rest while breathing in each others faces. The girls really do seem to take comfort in each others presence….we can’t wait to get them both home so they can do this all the time.

Ellie continues to do well with her bottles and breathing but unfortunately she lost weight again today (for the third consecutive time). She is down to 2.25 kg and really needs to start catching up to her 4.something kilo sister. Once again all the babies around Ellie’s bed have moved on to Level 2 and there are new faces in the ward. Ellie’s current good progress does put her at risk to being bumped to Level 2 if more new bubs come in, which is a really good thing but scary for us. She has only been in the one place since she was born 4 months ago.

 

 

Day 103

Well, I’m not sure how, but it seems Ellie might have access to this blog. After reading that she is moving slowly and that things will take some time, Ellie decided to hurry things up last night. At 4am she managed to remove her breathing tube all by herself which the nurse only realised when she heard Ellie crying (they can’t cry while intubated). After some frantic rushing around they managed to organise and set up a brand new NAVA machine which she is currently still on.

She seems very happy with her efforts and, although quite tired, she is much more relaxed and content without a large tube stuffed down her throat. (Now she just has a small feed line and a small NAVA line instead). Her oxygen has come right down to 21% meaning she is just breathing normal air with the assistance of the pressure that she still needs. Her milk continues to increase and her morphine will start to decrease.

We still have to wait to see exactly how long her antibiotic course will be as well as what sort of access they will use to give them, but our Princess Warrior  has decided she wants to get the ball rolling now. Other than seeming exhausted from her escapades, Ellie’s stats look really good and she is again impressing her doctors with progress.

*Matt

Cheeky Ellie seemed quite pleased with her efforts.

Ellie breathing all on her own (for 3 seconds while they changed her mask).

 

 

Day 89

When you are in NICU unit with over 40 premature babies, you know your baby must be sick if you are the only parents offered a room that is literally within the unit itself. When we arrived on Saturday night, the empathetic smiles from all the nurses on the handover round said what Ellie’s nurse was brave enough to tell us face to face that night – ‘I don’t think she is going to make it through the night.’

Over the last two days Ellie has proven once again that she is a fighter…..a warrior princess. Antibiotics are fighting the infections while we wait to see if she is able to open up part of her lungs to start breathing again (without such high pressures from the ventilator). She has been heavily sedated since Saturday but surprises nurses by occasionally moving a foot or opening an eye to let them know she is still there.

Doctors are very cautious when talking about her chances from here on but with every hour a tiny bit more hope creeps in. When she gets past this immediate danger her next challenge will be to face any complications these trials might have brought along. Once again we are so humbled by the rallies of prayer and support that have been happening just for our little girl.

Hannah on the other hand is a hit with the nurses, she has made us truly aware of how much these amazing people really love babies! It is hard to walk through the NICU without someone offering to hold, feed or bath our baby that is no longer admitted to the hospital. One nurse even took her during her lunch break so Deb could have a sleep! Hannah had her first trip into the big world today when we went to stretch our legs and get some real air into our lungs.

Deb has been amazingly strong having a newborn, a critically ill premmie and a sick husband to look after all while being away from her boys. (I have been unable to help much until today for fear of sharing the family flu with the bubs). I will head home today to be with the boys and she will be staying somewhere local in Randwick until Ellie is out of the immediate danger zone which is likely to be at least a week.

Hannah’s first outing

I quite enjoyed a moment at the shops today when an elderly lady was admiring Hannah and said she must be very new. When I told her she is 3 months old she was quite taken back.

Sneaky late night hugs.

 

Hannah cheering on her sister.

 

 

 

Day 71 – make Mum smelly day!

It was so wonderful to walk in today and see Ellie in her big girl bed! And wearing proper clothes.

Last night Ellie’s amazing nurse reunited the girls for a brief amount of time (they both cried when it was time to part again).

Hannah came off all her monitoring today (and a very girly little number was found for her to wear).

So the girls decided I wasn’t quite smelly enough today. Ellie did a beautiful pentavite (a disgusting multivitamin for kids that is supposedly pineapple flavour and bright yellow) vomit all down the inside of my shirt and all over herself during hugs today, she was very sticky afterwards. I then went to see Hannah who was quite smelly, I changed her nappy, bottled her and while I was burping her she decided to fill her nappy again. I was thinking that is great two good size poos she must be feeling good. I took her nappy off to change her again, she wasn’t done….. my shirt, pants, hand (dripping off my hand), the chair behind me, her crib and the floor were all covered and very stinky! Needless to say she was looking quite relaxed (and probably no longer weighs 3kgs!). Thankfully my amazing midwife had popped in to see me so she was able to get my a shirt to wear home, however it was still a very smelly hour in the car.

**Just in, Ellie has been struggling with her breathing this afternoon, they checked her haemaglobin levels and they are low again. The nurse has just started a blood transfusion and we should know by about 11pm whether or not she will have to go back on to CPAP or if that life saving blood will be enough to help her breath easier. If you are reading this tonight, prayers for Ellie in this particular area would be appreciated, she really gets frustrated and annoyed at the CPAP head gear (plus we want her to breath easier on the high flow). Thanks

*Deb

Day 50

Ellie went on to bubble CPAP today! Her oxygen level needed to go up to about 24% (air is about 21%) but otherwise she is looking pretty good at this stage. She is also coping with the oil they are giving her and her digestive system is dealing well with the amount of milk she is on so they are going to start adding additional protein calories to the breast milk she is getting. Hopefully we will be seeing some big gains over the next couple of weeks.

Hannah visited her sister in level 3 today and got to enjoy some twin hugs, although Ellie was being a little bossy with her.

More Hannah news is that they will let me try and give her a bottle tomorrow!!!!!!!! I am so super excited. They will only allow 5-10mls of formula in the bottle so she doesn’t overload herself. I don’t think I have been so excited to feed one of my kids before, even with the ‘she probably won’t eat it anyway’ chance being so high. Yay!

For those that missed it last night, here is a link to the news story on the NAVA machine the girls have both been on in the past (it’s been 6 hrs for Ellie now, so it can be the past).

http://www.snappytv.com/tc/1848659/888532

Also any of those who missed the Catholic Weekly article, written by the amazing Sharyn McCowen it can be read here:

Premature twins prompt wave of community support for Engadine family

*Deb

Day 10

Today things looked a little more positive for little Ellie. She had not gotten worse overnight which was the best thing, but the doctors also seemed confident that they had a grip on the cause of her problems. Her first blood cultures came back and pointed towards pneumonia. Her final results should be back tomorrow night but the broad spectrum antibiotics she was started on yesterday should have it under control by then.

As for Ellie’s other issues the ventilator is keeping her collapsed lung under control. She is also coping (just) with her ibuprofen and they hope to give her a 3rd dose of that tonight to help close that heart duct.

(Hannah, you have taken a bit of a backseat in these posts recently but when you read this blog when you grow up we hope you enjoy your big news from today.)

Hannah has done TWO HUGE POOS!!! all on her own and is looking heaps more comfortable today. Her final blood test will come back this evening and they think she will be able to stop her antibiotics.

Communication is key

After another great day of ‘no news is great news’ I drove back from Randwick in high spirits. As I collected the boys and tried to convince them to come home with me (they are loving the extra time with grandparents) an SMS from Deb caught me off guard:

‘My stitch just came out, felt like fishing line being pulled through my skin. No dressing and I have burst open!’

After witnessing her c-section first hand (and getting in trouble from the nurse for looking over the screen) I had quite an accurate image in my head of what ‘burst open’ actually looks like. Needless to say I was quite relieved to receive a follow up text advising me to replace the word ‘have’ with ‘haven’t’.

*Matt