I look back on the post I wrote last Thursday and can't quite believe I'm blogging about the same baby. It's amazing how quickly things can change here.
We've had a really lovely couple of days courtesy of Martha Grace. Bear Ward has been treated rather like Hotel. We arrive in the morning, a quick update from the nurse, ascertain feeding times and when her meds are due for the day...then Martha is in her pram and spends the day with her Mammi and Nainy. We'rehaving panads watching Gavin & Stacey in the parents room, we roll the pram around level 6 to settle her to sleep. It's gotten to the point now that the Nurse will draw Martha's meds up then leave them next to her cot for us to administer. It's just so nice to be able to do that for Martha.
Yesterday we reintroduced bottle feeding. I know it's something we have to do, as easy as tube feeding is - Martha can't be fed like that forever. I made my Mam feed her, I was scared that Martha would choke if she had a shock from the Milk coming from the teat - she hasn't experienced that for 9 weeks.
We were feeding her 66ml every 3 hours. 1st attempt at bottle feeding saw her chew the teat and only take 10ml orally. We switched bottles for the next feed and she took 44ml orally. To be fair she's taken 20-50ml orally for each feed ever since. But she's getting there and we know it's going to be a slow process. The main issue is to let her learn how to coordinate her sucking, swallowing and breathing - something Cardiac Babies can sometimes find difficult.
Ward rounds this morning were also quite upbeat. The registrar was happy with Martha's attempts at bottle feeding, Furosemide is only being given BD (twice a day) orally, paracetamol is now being changed to PRN, her Liver is still slightly distended but not nearly half as bad as it was. Chlonodine is coming down from 4mg to 3mg, three times a day - she should have had her last dose before the end of the weekend.
Morphine is finished!!! She had her last dose at 7:30am yesterday and she's been grand ever since.
We've had a few nappies since Monday where there have been blood in Martha's stools. They've sent samples off to the Labs for testing and there is no virus or infection; her abdomen is nice and soft; she is clinically well; her HB and clotting have all come back as normal... So at the moment they are putting it down to the change in her feed from Monogen to SMA - but will request an Xray should it happen again.
The ECHO Martha had on Tuesday showed what we already know about the residual VSD and the regurgitation in the Aortic and Mitral valves; but if anything it was looking a little better
As I type this drinking my panad, Martha Grace is next to me fast asleep in her pram - to look at her you wouldn't know anything was wrong with her.
Tomorrow her Daddy, Big Brother and Big Sister come to visit - we can't wait.
Thank you all for your lovely messages and comments over the last few days. Have a lovely weekend.