Day 15

Lots and not too much seemed to happen today. Ellie got moved into a new bed (they get changed every two weeks), she did not enjoy being handled this much or being moved, Hannah became very agitated and squirmy while I was giving her hugs during Ellie’s move.  It took a few hours, a new ventilation tube and some sedatives to calm Ellie down. She is stable again now. While they were re-intubating Ellie, Hannah kept de-stating (dropping her heart rate). I’m not sure if Hannah keeps mucking up when Ellie is uncomfortable for attention, due to coincidence or if it’s a strange twincidence.

Good news for Ellie, while they were moving her they briefly put her on the scales and with her ventilation on she tipped the scales at a whopping 1016grams! So taking into account her ventilation she is still hovering around the 1kg mark. That’s massive for the little 695gram baby I had two weeks ago.

Hannah once again is off her feeds due to her digestive tract struggling a bit again, she lasted three days this time! She is also crying and whingy because she is getting hungry, I think this is a great sign. She is becoming more and more like a full grown newborn.

*forgot one important thing (sorry Hannah) Hannah has moved from NAVA back to CPAP today.

*Deb

Ellie’s hand and cannula

Hannah’s little foot and Mum’s hand

Day 14/Hannah Hugs!

Happy birthday girls, 2 weeks old today!

Some birthday highlights included:

• A lumber puncture for Ellie (which was relatively hassle free and showed no sign of meningitis!!)
• Both girls are now back on receiving milk through their feeding tubes
• Ellie has improved again and her oxygen requirements have come down to 33%
• Hannah had her first ever hug and was stoked to share it with her mummy.

Hannah’s first hugs while on her NAVA

Deb and I are both deeply touched by the huge amounts of support that have been carrying us through this. Thank you so much to the countless people that are helping us in so many different ways, we are positive we haven’t been able to properly show our gratitude but know it is what is keeping us going at the moment.

*Matt

Day 13

Ellie is still on bed rest and is nil by mouth (she still receives food intravenously, but no milk). The amount of morphine she has been on was halved this morning, as she is looking a little bit more comfortable. She still got cranky during her cares, but looks better than she has. Unfortunately her cannula will have to be replaced, the antibiotics makes them not last as long. Ellie seems to be fighting the infection well, her blood tests have been coming back better.

Hannah is looking good and big (compared to Ellie, especially).The doctors have changed her NAVA settings slightly making her a little less reliant on it. They have also increased her feeds to 1ml every 2 hours. Unfortunately she is not pooing as regularly as she should be again. The most exciting thing is…… she will be off humidity tomorrow and we get to have hugs for the first time (for about 2hrs)! Can’t think of a better way to celebrate her 2 week birthday.

Sleepy time

The nurse took photos with my head gear off.

They look alike to me, can you guess who is who???

*Deb

If you would like to read more about my personal journey through this, click on ‘A premmie Mum’s Diary’ in the menu.

Day 12

It was a day later than we asked for but some good news for Ellie was still very welcome. Ellie’s blood transfusion went well and she showed immediate signs of benefiting from the extra blood in her system. She is still needing morphine to control the pain and agitation that comes with a Sepsis infection. The best news is that the cultures have come back from the blood test and the antibiotic they changed to last night is confirmed as the correct one and signs of improvement are already at hand. She is down to needing 40% oxygen and her skin and bloated tummy both look better. The doctor’s plan is to get the Sepsis under control, then readdress the open heart duct issue and finally look to help her improve her breathing.

Hannah is doing great at the moment and even has put on weight now weighing in at a massive 1.2kg! (she weighs more than a bag of tomatoes!) Her breathing is continuing to improve and her only hurdle is learning to tolerate her feeds.

Hannah having finger holds with her Daddy

Both girls still have a long way to go and Ellie hasn’t fully escaped her infection scare yet but the parents are feeling in a much better place than we were last night.

*Matt

 

Everything happens for a reason?

‘Everything happens for a reason…..’

I have never liked this saying, particularly when used in faith circles. It grates me and unintentionally paints a picture of a cruel and callous God who makes terrible things happen just to prove a point. Looking at Ellie today with a long line in one arm, a cannula in the other and a second cannula due to be put in (for her upcoming blood transfusion), it was quite clear to me that there was not a good reason that had ultimately orchestrated this girl’s torturous start to life.

Ellie prior to receiving a second cannula.

I do believe however that there is some merit in the saying. From my experience it translates a little better as follows:
‘God can create a reason from anything if you allow it.’

As difficult as the last 11 days have been, the good that has come from this struggle is overwhelming in itself. Even as I write this post unsure of Ellie’s future, the amount of lives she and her sister have touched is undeniable. The generosity and goodness of those around us has been amazing, the amount of people called to prayer is astounding and the countless family, friends and strangers who have been rallying behind the girls is incredible. Even today several people have been inspired to give blood to the community after hearing about Ellie’s blood transfusion!

At times it has been tempting to become reclusive and hide the difficulties from everyone but we have never once been let down by sharing our vulnerabilities. As painful as it can be I feel God calling us to offer up these trials and allow a greater good to come from it.

*Matt

Day 11 – Easter Sunday

Wow 11 days, it feels like so much longer. It is hard to remember when these girls weren’t in our lives.

Our Easter Sunday didn’t bring the positivity we had hoped for in relation to Ellie. She now has collapsed lobes in both her lungs and is fully reliant on the ventilator and is sitting at 50% oxygen (they will work on slowly bringing this down). The infection she has is a resistant strain and the antibiotics she was on were not effective. They have her on two types of antibiotics now one of which they try to save as a last resort for cases like this, when regular antibiotics don’t work. She did manage to get her three does of ibuprofen however they were unsuccessful in closing the duct in her heart, they said they may not have been as effective due to her infection. Hopefully they will be able to give her another three doses in a week or so when she is feeling better and can avoid the heart surgery. Ellie also currently has a low hemoglobin count and they think this may also be contributing to her respiration struggles. They will be starting a blood transfusion at about 4pm and that will take 4 hours. She is receiving 15mls per kilo which is equivalent to 10.5mls for Ellie. Thank you to everyone who has ever donated blood.

Hannah has been a little neglected from her parent due to Ellie making such a fuss but she seems to be doing well. They continue to stop and start her feeds due to green ‘premmie gut’. This issue is very common for premmie’s and should correct itself eventually. It’s due to her digestive tract not being prepared to have food for another three months.

*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.

Day 9 / Good Friday

Today has been our most difficult day by far.

Hannah has been restricted to ‘nil by mouth’ as her little tummy isn’t tolerating the milk that Deb has been working so hard to provide for them. She also remains on antibiotics but the first results from her blood test show good signs for no infection but they will wait to receive the final test tomorrow. Hannah also had her heart scan today and she doesn’t have the same issue that Ellie has.

Ellie – When we arrived at hospital today we found out Ellie has a collapsed lung and has not improved with her breathing. Throughout the day she has needed higher levels of oxygen and they have put her on antibiotics as they suspect a chest infection could be causing her to slip backwards. Ellie is definitely starting to rely on her middle name (Grace) and so are Deb and I as we trust in the experienced hands of the doctors and nurses in her care.

It has been quite a surreal day as we went straight from the Good Friday passion play at our church to the hospital at Randwick. The Easter weekend is filled with messages of suffering and hope, of pain and joy, of loss and great victory. Hannah and Ellie are living out their own suffering on this Good Friday and Deb and I are eagerly yearning for an Easter Sunday experience for them as well.

Prayer across the globe

What difference are your prayers making?

Well, I don’t know of a way to measure that but I can say that both Deb and I have felt an amazing sense of peace amongst the stress and worry. It is not an alternating of feelings but an underlying peace that is still there during the other conflicting emotions. We are so thankful for this gift which we attribute to your prayers.

Just one example of these prayers is a couple who dedicated part of their once in a lifetime trip to praying for Ellie and Hannah. Thanks Jerard and Enda.

See more about their Camino adventure here – caminowalkformaliana.weebly.com

 

Day 8

Another tough day for the girls and we are starting to see some of the problems they told us often come with premmies.

The doctors decided to extubate Ellie to try her on a lighter breathing device but she was intubated again 5 hours later. They did a heart scan on her to see what is causing the breathing problems and found the duct joining the two sides of her heart is wide open (should have closed at birth), so her lungs are getting too much blood. They hope that 3 days on nurofen will close it but if not she is looking at heart surgery which is quite scary at her size.

Hannah is also having struggles and has been quite agitated. She had 3 aponea’s and she got moved down to the NAVA breathing support and she seems to being doing OK on that now. (Only 23% oxygen, 21.6% is air). They are also planning to do a heart scan on Hannah to see if they can find what is slowing her down.

The really good news is both girls got a clear head scan today (which means they are past the biggest danger zone for bleeding on the brain).

Hannah without her CPAP

Ellie getting a hug

Ellie getting her heartscan