Our little boy is already 1 month old today! Time flies by way too quickly.
Happy to report that his breathing was better today. The doctors think that the problems yesterday were probably due to a combination of his feeds being increased so quickly and him being taken off the diuretics at the same time. This meant his body had a lot of fluid to deal with, some of which may have ended up in his lungs (which are already usually working harder than in healthy babies) and affected his breathing.
Hopefully his breathing will continue improving so that we can pick up again on our latest project - getting Jonathan to take his feeds by mouth. After a promising start to the breastfeeding, we didn't have much luck getting him to give it a good go after that because he was getting too tired, possibly due to his breathing problems, so the speech therapist has suggested that we also try to get him bottlefeeding at the same time as that takes less effort. As we'd need to get Jonathan feeding properly by mouth before he can go home, hopefully we'll have better progress with it this coming week!
The other good news is that he no longer needs his supplementary nutrients via the drip as he is now getting all the nutrients he needs in his feeds of milk, so the doctors took out the long line in his foot. Both of his feet are now free again to kick about to his heart's content - the only downside to this is that he seems to particularly like kicking around during nappy changes!
Apart from unsuccessful breastfeeding attempts and breathing problems, the other bane of my existence at the moment is leaky stoma bags! For some unknown reason, in the last week Jonathan's belly has become very un-sticky and the stoma bags for collecting the waste that comes out of his stoma won't stick on properly and keep leaking. Before that the bags were lasting 2 or 3 days before they started leaking and needed to be changed but in the last week they were only lasting a few hours and so had to be changed 2 or 3 times per day - not fun for all involved. The nurses usually don't like the job (understandable - who could honestly say they enjoy a fiddly job that involves baby poo??), Jonathan gets very agitated and I get very stressed seeing that it seems like a job that involves at least 4 hands to execute and I only have 2...
Currently my only role in the process is to hold down Jonathan's legs and arms to make sure they don't get near his stoma but eventually (hopefully after I grow 2 extra hands) I'll need to learn how to change the bag and clean the stoma so that I can do it when he comes home - at least it looks like I should get plenty of practice if those bags keep on leaking so quickly!
So it sounds like it'll be another busy week ahead but we'll try our best to do a better job with keeping the blog updated.
A big shout out to our family (especially the tech-savvy great-grandparents!!) and friends who have been following Jonathan's adventures on this blog - lots of love to you all!
Happy to report that his breathing was better today. The doctors think that the problems yesterday were probably due to a combination of his feeds being increased so quickly and him being taken off the diuretics at the same time. This meant his body had a lot of fluid to deal with, some of which may have ended up in his lungs (which are already usually working harder than in healthy babies) and affected his breathing.
Hopefully his breathing will continue improving so that we can pick up again on our latest project - getting Jonathan to take his feeds by mouth. After a promising start to the breastfeeding, we didn't have much luck getting him to give it a good go after that because he was getting too tired, possibly due to his breathing problems, so the speech therapist has suggested that we also try to get him bottlefeeding at the same time as that takes less effort. As we'd need to get Jonathan feeding properly by mouth before he can go home, hopefully we'll have better progress with it this coming week!
The other good news is that he no longer needs his supplementary nutrients via the drip as he is now getting all the nutrients he needs in his feeds of milk, so the doctors took out the long line in his foot. Both of his feet are now free again to kick about to his heart's content - the only downside to this is that he seems to particularly like kicking around during nappy changes!
Apart from unsuccessful breastfeeding attempts and breathing problems, the other bane of my existence at the moment is leaky stoma bags! For some unknown reason, in the last week Jonathan's belly has become very un-sticky and the stoma bags for collecting the waste that comes out of his stoma won't stick on properly and keep leaking. Before that the bags were lasting 2 or 3 days before they started leaking and needed to be changed but in the last week they were only lasting a few hours and so had to be changed 2 or 3 times per day - not fun for all involved. The nurses usually don't like the job (understandable - who could honestly say they enjoy a fiddly job that involves baby poo??), Jonathan gets very agitated and I get very stressed seeing that it seems like a job that involves at least 4 hands to execute and I only have 2...
Currently my only role in the process is to hold down Jonathan's legs and arms to make sure they don't get near his stoma but eventually (hopefully after I grow 2 extra hands) I'll need to learn how to change the bag and clean the stoma so that I can do it when he comes home - at least it looks like I should get plenty of practice if those bags keep on leaking so quickly!
So it sounds like it'll be another busy week ahead but we'll try our best to do a better job with keeping the blog updated.
A big shout out to our family (especially the tech-savvy great-grandparents!!) and friends who have been following Jonathan's adventures on this blog - lots of love to you all!
5 comments:
To be one month young Jonathan seems
to have improvements with his health.
Have you got his head scan report?
happy birthday, for 1 month!!!
Hurray, isn't it great!!!
love and kisses
Lynda
so happy that jonathon has improved since yesterday. love the updates & photos. love dawnie.
happy 30 days to jonathan and his fantastic mummy and daddy- you'll have to celebrate with yum cha ( do they do take away?!)
good luck with the feeds- fingers crossed he can go home with you soon xxx
Happy monthday Jonathan, Trace and Chris! For a little munchkin working so hard on his breathing and feeding he still seems to find the energy and time to continue to get cuter and cuter, if the photos are anything to go by. Hope the feeds go ok and the tummy gets stickier. Oh, and also wishes for an extra two hands for you Trace! xoxoxo
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