Give us a break

ARGH!!! Things have gone downhill since my last post. Unfortunately Raffy caught a cold whilst in PICU. She was such a miserable little pumpkin and it was so hard to just watch her crying and grizzling in the cot. She was vomiting and had a temp as well. So now her recovery has been delayed because of this as they have had to put the CPAP back up to 10. The doctors and surgeons are still unsure whether it is her floppy airways or her narrow aorta which is giving her trouble breathing. I believe the plan is to let her rest on full CPAP for a day or so then to start weaning it again and hopefully we will some indication of which one it is.

The good news is that she is fully off any sedatives although the night staff give her some during the night if she is wakes up. I am not too happy about this and have spoken to our social worker and liason officer about it. The fact of the matter is that she is a 6 week old baby. She doesn't want to sleep all the time and she has her alert periods where she wants to be stimulated just like any other baby. I don't think it is fair to keep her drugged up so she will sleep. How many six week old babies will sleep from 7pm till 7am?? None that I know of anyway.

I got the fright of my life this morning when I went in. We are in room 3 and Raffy's bed is right in front of the doorway so I can see it as I walk down the corridor. Well this morning her bed wasn't there. I stopped at the central desk and asked where my baby is?? Nobody knew where she was. Luckily we found her still in room 3. She had been moved to another position in the room but no one had changed the paperwork.

Today is day 37 of our PICU stay so far. The time really is flying by to be honest. This whole expressing caper is getting on nerves and I can easily see why so many mothers turn to formula. I will keep it up though so I can start trying to breastfeed when we get up on the ward. They are fortifying my EBM with formula to give Raffy extra calories so we can fatten her up a bit. I actually thought it would be some special formula specifically made for this but in reality, it is just Nan HA Gold.

Anyway, I had better go and finish the washing and then wander back over to the hospital. I hope everyone out there is happy, healthy and doing well.

Peace out xx