Update from the Ronald McDonald House, Rotterdam.

Noah had a few episodes that required the nurses to breath for him, but everyone saw a difference in him by the end of the day. He really takes comfort from us being here and that makes it all worthwhile.
Today Noah had an echo on his heart but we won't know the results until after the doctors have compared it with previous echos. His belly is very distended and hard, he received water medication in the hope that he can urinate a lot of the excess away but for now this symptom remains under high observation. Noah also received some medication for his lungs to help him shake loose some of the phlegm and this did seem to make a difference. Tomorrow another echo will be done to look at the fluid in his belly.
The Ronald McDonald house is thankfully very comfortable and of a very high standard. We were able to cook a meal and make sandwiches for tomorrow, which helps us to feel a little bit more normal in this situation. It's wonderful that such facilities are available for parents.
It's been a very long day - we left Noah trying to fight sleep by boxing his mobile animals. His eyes were rolling around in his head so I'm sure as soon as we were out the door he was busy counting sheep - now it's time for Thijs and I to do the same!

The Drostens

UPDATE - 27Oct midday

Noah had a restful night, only one episode which is an improvement on the previous night. I was able to get in early to see Noah this morning since I'm so lovely and close by in the Ronald McDonald House. His little face showed how surprised he was and then lit up with a big grin. My heart melted.
I took care of him instead of the nurse, which was great. He had a restful bed wash, (putting in his bath would take up too much of his valuable energy at this time), which I followed with changing his cannule band. This he didn't like at all. I think he's a bit hyper sensitive because of all the people that have been prodding and poking at him these last few days, so he got very upset and had an episode. However, he didn't need medication to calm down, so that is also an improvement.
Once he was dressed he lay in my arms and drank 80ml of his milk, only needing to take 20ml via his food tube (sonder). He had a little play with his baby gym, taking his frustration out by whacking all the toys! I left him sleeping peacefully. I'm also off for a little nap, (it was a long night!) and I'll go back in time to express some milk for his afternoon feed around 3pm. It's too early to say for sure, but Thijs and I are hopeful that he's turning the corner. The doctors are still investigating the cause, no results back yet.

Louise