Our 8th day 18/04/16

We are one week old already! 

Today was a little challenging with lots of worries and some milestones too. 

Daddy came on his own at first because mummy was seeing the midwives downstairs to check that she is OK and mummy’s milk was frozen so daddy wanted to put it in the hospital freezer before it was too late. 

When mummy came, she looked very worried and just about held back the tears. She peered through the window as she walked down the corridor and there were 6 Drs / nurses and daddy stood around my (Rory) incubator. Dr Liz Pilling, who is looking after us instead of Dr Clarke was very quick to calm mummy down and explain that they just needed to update mummy and daddy on us both and had to wait for mummy before she could start. Here is what Dr Pilling said…

Rory – I have had a pulmonary haemorrhage like Austin where blood is leaking from my heart into my lungs. The open duct is 2mm. Dr Pilling says that anything less than 2mm isn’t usually a concern and so I’m only just worrying them. Mummy and daddy get really upset when blood comes up my tube and it always seems to be daddy who spots it. I have had a brain scan today and the bleed on my brain still hasn’t got any bigger and so they are not worried about it anymore and it is very unlikely to have any long term effects. They are only going to scan me once a month now. Very good news. The Drs have decided to treat my pulmonary haemorrhage with medicine but the Drs needed to tell mummy about all of the risks. They will give me a big dose today, a little bit less tomorrow and less the day after and then they will scan my heart again and hope that the duct has closed. Hopefully I won’t have a reaction to the medicine or any of the side effects. I really hope it works. 

Austin – I still have a moderate amount of blood coming up my tube because of blood leaking from my heart into my lungs. The open duct is 4mm (double the size of Rory’s) and it is still a concern for all of the people looking after me. The Drs are going to give me medicine same as Rory and so we need to hope things go smoothly in the next few days. I had a brain scan today too and I have had another bleed on my brain but this time on the left side. I’m trying really hard to be strong but I’m getting so much treatment and lots of procedures done and I hate being touched, I’m so uncomfortable and I just want to rest. I was given my third blood transfusion too. To make things worse today my umbilical cord has come to the end of its life and so all of the lines that go into my tummy don’t work properly anymore. This made mummy really anxious because the monitors flat line as they aren’t picking anything up. I have to have a long line in my leg instead. Another baby in my room had one put in today and mummy and daddy were overwhelmed by it, they said they didn’t want to be around when I had it done because it would upset them. It takes a while and involves covering me in sterile plastics, scanning me to find my veins and threading lines in them. Not very nice at all. 

I heard mummy telling daddy that she didn’t have the strength to do today, so we thought we would cheer her up a little……I (Rory) did my first poo! 

The nurses changed our bedding as well and nurse Karen held us up whilst nurse Tamsin and nurse Mikila changed the sheets. 

 I (Rory) was allowed my first blanket. I was so cosy that I slept the entire day whilst mummy and daddy sat watching me through the incubator. 

I got a little warm so I stuck my leg out. 

Mummy helped us to get big sister some presents from us today. We got her some heart shaped treats and a new collar that matches our nursery. Mummy and daddy are allowed to bring in our own blankets now so we can give a used one to Beau so that she can learn our smell. 

The best things about our first week are;

– meeting mummy, daddy, grandparents and uncle Craig and Kieran. 

– having our first taste of milk.

– holding daddy’s hand

– mummy wishing us happy 1 week birthday

It’s mummy’s birthday tomorrow so daddy gave us a couple of quid to go shopping and buy her a present! Mummy told daddy that another day with us both would be present enough for her. 

Update:just rang, both boys given medication at 8.00pm. It is now midnight, no concerns as of yet. Austins pressure that manages his bleeding has been turned down to 6 and he has had his blood gases checked since which are fine. Austin has just been allowed a blanket too and so both boys are snuggled down for what we hope will be a settled night. 

2 Replies to “Our 8th day 18/04/16”

  1. Hi Austin & Rory I am really enjoying reading your daily updates, you are 2 very special little boys, you are already Hardy boys as you have earned this status, keep fighting & look forward to my cuddles soon, say Happy birthday to mummy too, love from Aunty Lynn & Uncle Clarry xx


  2. Beautiful strong baby boys, I must admit I’ve had to pluck up the courage to read your blog.. And I’am glad I did. It really humbled me. My eyes are very shiny and leaking somewhat :0) .. What an amazing journey guys. Your amazing!! My prayers are with you all..every day X 🤗


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