Day 137

Sorry if you felt ripped off by last nights blog, it felt very long to me typing one handed on my phone while holding Ellie. I didn’t realise how short it was til I saw it on a computer, oops.

Anyway this is the Ellie story (my version and ideas anyway). 16 days ago Ellie had just gone from CPAP to high flow and enjoyed her first bottle. 9 days later she was on low flow, minimal oxygen and no pressure, she was also drinking 4-5 out of 8 bottles a day. Then two days after going on to high flow she had her immunisations and the next day an hour long scan, then another quicker one in the afternoon. Needless to say as the week went on Ellie was working harder at her breathing and not drinking as many bottles, this was put down to her immunisations. My theory now is that she is flat out exhausted. It was only on the 11th June that we were called in because she was so sick. She has shown us what she is capable of, but needs to doing it all a little slower.

Ellie has severe chronic lung, it is going to take 2-5 years for lungs to become larger and stronger. All her tests are clear for infections and viruses. She is purely exhausted. Even though Hannah looks well she also has chronic lung. There are times at home when she has to work at her breathing simply because something has made her tired. I am going to use this as a reminder that my beautiful daughters can get very sick very quickly and easily. A mild virus to one baby will almost guarantee Hannah will be back in hospital and could put Ellie on a ventilator. Please don’t touch the girls hands or faces or any part of them. I’m finding it very hard because it feels mean to tell people to back off. But I have seen my girls so very sick, so if I seem rude I apologise, but please don’t touch my babies.

They tried Ellie on high flow for about 5 hours early this morning but her effort with her breathing increased again and she is once again on CPAP and looking comfortable. We will confirm with the consultant tomorrow that her hernia surgery will be postponed. She needs this week to rest and recover.

One thing I forgot to mention yesterday is the spot in level 3 that she has moved too. The only bed available was the bed in the isolation room, which means Ellie is getting one on one care (because of her positioning and the other baby near her), she has a heap of space around her bed and it is nice and calm and quite (very different to level 2). She can also listen to her music without annoying anyone. She has been getting a lot of visits from her nurse and doctor friends (she is now just metres from the doctors desk). So although she has had a setback, it is nice to see her looking well (normally a setback means she looks terrible because she is so sick) and she is enjoying the luxury of her private ‘suite’.

*Deb

PS so far she has gone through 3 feeding tubes and two cannulas in 36 hours, thankfully they have given up on cannulas now.

Back to CPAP and hugs with Mummy

A short stint on high flow, giving her nose and head a break.

Day 136

Well last night we got called to be told Ellie had a big vomit, possibly inhaled some milk had a bit of a crash and collapsed one lobe of one lung.

She is now on CPAP and requiring a small amount of oxygen. She is back in level 3 and enjoying the company of all her old friends.

She is currently resting peacefully in her Mummy’s arms.

* Deb

Day 135

Starting to feel very done with a baby in NICU, I’m very ready for a healthy baby that can come home.

Today Ellie was still very tired, she has had only 2 bottles now and she isn’t finishing them. Her oxygen went up slightly to 75mls and she is straining a lot, when she does this she turns a not so nice shade of purple. The doctors are not worried at this stage and I am very much hoping it is her hernia giving her grief.

Despite the straining and tiredness is does seem slightly better than yesterday but not the same as she was last weekend. Matt’s turn to visit tomorrow and then only a couple of days before her operation.

*Deb

Attempted hearing test, unit was too noisy will try again next week. Ellie still enjoyed it.

Ellie playing during her brief awake time this morning.

Guess who I spent today with.

Day 134

Today was a little tough for me (I will start with the girls are fine). Ellie had temps overnight and was working at her breathing a little harder than usual (a reaction to the vaccination). She didn’t look her usual self this morning – she was a little grey/purple compared to her usual yellow/pink. It was quite scary seeing her a little unwell because I am very aware of how quickly things can change for Ellie.

This morning she had a slight temp, but went down for her scan anyway – the ride upstairs in her bed actually calmed her down a bit, if only we could put her in a pram. She was amazing during the hour long scan, the only trouble she had was when she had a little refluxy vomit (during a feed) and had trouble, as anyone would lying flat on their back with a nuclear medicine machine about 2cm away from your face. With a little assistance from the nurse she was fine and the hour seemed to go by quickly (helped along by Hannah doing a massive poo and needing a bottle).

When we came back Ellie (also pooed) and had some panandol and slept the day away. In the afternoon she had to have a second 10min scan. Upstairs again (Hannah and Ellie both pooed while we were there this time), once again Ellie was beautifully behaved and I think enjoyed the change in scenery. Ellie has had all tube feeds today and  is once again sleeping. Her work at breathing and her being unsettled this morning was worrying for me.

I might have rung twice already since I left, but I feel like I am justified to one paranoid day (I just feel sorry for the poor nurse looking after 3 needy babies today). The doctors came around this afternoon and had a good look at her and she is fine, they are very confident it is just a small reaction to the immunisations from yesterday. I have to say one day of being unsettled and needing a little panadol wouldn’t compare to polio or pneumonia or anything else she is now hopefully protected from.

*Deb

Mummy that is very close to my face (normally only the trunk of the body goes under, small people problems).

 

Day 133 – 6 weeks old (or 19 depends how you count) and smiles

Quieter day today. Ellie was a little tired after 6 bottles out of 8 yesterday. When she did wake at 12pm for a bottle she also got her 4 month immunisations, she coped extremely well. She is sleeping the afternoon away after it too.

They turned Ellie’s low flow down to 25mls this morning, however she wasn’t doing as amazingly as she has been the last few days and she reacted to her first immunisation by holding her breath, it is back up to 50mls and will be weened slower now.

Ellie is having a HIDA nuclear medicine scan tomorrow. This is a follow-up to the liver medication she is on to help with her conjugated bilirubin (jaundice). They are just checking to ensure her gall bladder and liver are functioning correctly. The doctors are quite confident that it will be fine however it is a necessity.

It has also been confirmed that the head of surgery will be fixing Ellie’s hernia next Wednesday and the anesthetist that can perform the spinal block is also booked in.

*Deb

 

Heads back, must be sleep time

Day 132

Ellie is a superstar!

Assuming all goes well overnight Ellie will get her 4 month immunisations tomorrow, get a scan (precautionary) to check her gall bladder/liver is working correctly (associated with her jaundice) on Thursday and then she will be on the list for level 1! Her low flow is down to 50mls (she started at 100 on Sunday). She is having about 4-5 out of 8 bottles a day and impressing the doctors.

Today I got there just as Ellie was finishing her 9am bottle, but got the privilege of changing her pooing nappy and then had a home practice day. The girls bedded together, mananged to do a total of 5 poos between them, I bottled them at 10am, 12pm, 2pm and 3pm (Ellie is on 3 hourly feeds and Hannah 4 hourly) and I have to say the girls didn’t sleep a whole lot and I’m pretty tired. It is just Hannah and I at Kensington tonight and Hannah has decided to cry the evening away (she doesn’t always like long days at the hospital – we left just before her 6pm bottle). The girls got to spend a little bit of time together, listen to some music and keep their Mum busy, it was a nice day.

*Deb

Woohoo party day!

My turn for a feed Mummy

Almost both asleep

Day 131

Monday is always a short visit as I have to be back to Sutherland start a band at 1pm but I was excited to see Ellie and her new high flow look. She did amazingly well overnight and yet again surprised the doctors by having a fantastic oxygen saturation despite them giving her quite a low first dose of low flow (80mls).

She was quite sleepy but opened her eyes every now and then to check someone was there, so it felt worthwhile coming in.

It is quite obvious that Ellie has won the hearts of many of the staff in her 131 day stint in the ICU. Every registrar, consultant, fellow and nurse who has come past her bed has shown genuine excitement for her recent progress and her move out of Level 3. It really is a beautiful place with so many people who are clearly working in a job that reflects their passion.

Her clot in the jugular is now considered redundant (not a threat and not worth treating). Her biggest challenges ahead now are a hernia operation, recovery of her liver and continued progress with breathing and drinking. In the light of what she has come through these almost seem like small challenges for our Princess Warrior.

*Matt

Ellie chillin out to some Matt Maher and Hillsong

Day 130!

And what a 130th day it was!

It was Ellie’s turn to prove me wrong. The doctors wanted to try Ellie on low flow, I kept reminding them she was paralysed and intubated only 6 weeks ago. After a discussion with the fellow and consultant and then the consultant and then again with the fellow. I was willing to let Ellie try. Well of course Ellie was right, in fact she is actually doing a little better on low flow than she was high flow. I don’t really understand the measure of oxygen on low flow, but the highest is 150mls and the lowest is 25mls, Ellie started on 100, was saturating at 100% so was turned down to 80, still saturating at 100% and the doctors have requested despite this that she stays at 80 overnight. Little trooper. So far she is very settled and happy, she even took a bottle very well on low flow.

It was very strange visiting Ellie in level 2 today, she is about 4 metres from her old spot, but it is very different (weird seeing another baby in HER spot as well). She has been reunited with one of her friends that was across from her in level 3 which is nice. She is still in quite a social spot so she still gets lots of visitors (nurses and doctors) which she also enjoys. It is very strange having her so well, we have to wait til the 3rd August for her hernia repair and then who knows what will happen……

Thank you for all your support over the last 130 days (and some of you before that). Also thank you to all the people that have contributed to the 75 blood donations, so far!

You have saved 225 lives!

Both the girls still have a journey ahead of them as their bodies and development catch-up with the age and combat the effects of being born at 26+6, thank you for taking this journey with us.

Hopefully tomorrow brings the removal of all her high flow gear from next to her bed and a blood test with better liver results! (she is getting less yellow slowly).

Morning hugs with Mumma

Hannah playing with the boys

Transitioning and showing me she can breathe with nothing! (for a little while)

I can do low flow, it’s great!

*Deb

Day 129

Today was a bit of an eye opener for me (Daddy day at the hospital). Since Ellie’s big crash on the 11th of June I have been very reserved in my hope for her future. Even though Ellie has defied every negative prediction so far, a big part of me has prepared for the worst while trying to remain strong.

After seeing Ellie today, it almost felt like she had a mission to break me out of that mindset today. There were a number of things that broke me down slowly:

1. Giving her two full bottles today that she drank easily and reminded me of Hungry Hannah as she gulped them down
2. She was looking around at the world with such interest and interacting with me
3. She cries just like Hannah now (nice and loud)
4. There was one moment when I tried to burp her and he was not happy about it and stood up on my lap in protest (her legs are really strong!)

To drive the point home even more Ellie got evicted from Level 3! Even though we feel like she may not be totally ready for this, she was the strongest bubba on Level 3 and with an emergency delivery coming this afternoon she was wheeled down the corridor into the next section of the ICU. She had been in that one spot for the last 4 months, her whole existence, so it feels like a big deal that she has moved a few meters down the hospital hall.

Her next big step is to get off her high flow, today she went down to a pressure of 4 which they said would be the last step before getting off.

Our new favourite photo – Cheeky Ellie

One last snooze before moving house

The busy job of moving a bub in the ICU

 

 

Day 128

Ellie is officially the ‘healthiest’/most stable baby in level 3 and is now at the top of the moving to level 2 list to make room for new babies. I was hoping to go from level 3 straight to level 1, here’s hoping no babies are born sick or early….

Ellie’s high flow support was lowered slightly today and there was talk of lowering this further over the weekend/early next week (because she is SO old now they can’t actually lower it as much as they could for younger babies, so there is only one more level down for her and then they may try her on low flow – just oxygen no pressure). There is still the possibility the steroids and diuretics will clear her system and she may take a step back but at the moment she is looking good.

After I accidently made her vomit a whole bottle this morning (you would think I would know better than to ‘shake’ a refluxy baby straight after a bottle) Ellie has had a fairly uneventful day. She has been having 5 out of 8 bottles for the last couple of days and this afternoon decided to sleep it off, she has had two tube feeds in a row. My guesses are she is worn out after working so hard or is getting ready for a big night of being awake.

It is so nice seeing Ellie so well. Although dressed in yellow does clash with her jaundice and makes her look a little funny, I will ensure she is pink again tomorrow (the one colour that makes her look less yellow). Although she is slowly getting less yellow as her medication works.

*Deb

Hey that’s me!

Hannah doing her best to wake up Ellie.

Papa hangin’ with Hannah at the hospital.