So, the super starfish man is getting old now! Longer and wider and bigger and lots of other things with -er on the end (cool er, laughing er, funny er, alert er, smiley er, hungry er {mostly, kind of} etc).
We had another busy week this week just gone... heart clinic Tuesday, audiology Wednesday, cleft clinic Thursday.
Heart Clinic.
After a week of trying my darndest to increase Oscar's volumes of milk, I was excited to get him on the scales and see if my hard work had paid off. Looked like it had with Oscar weighing in at 4.75g, a 180g increase in a week and twice the previous weeks gain - looked like I had been doing something right... However Oscar was still below the line for his age. The Cardiologist wasn't bothered though as they don't expect heart babies to do all that well in this department! They do however want him to be at 5kg for his surgery so I was pleased we were heading in that direction.
They decided he was working harder than before and it was time to put him on medication (which they had thought he'd be on at around 8 weeks of age - so he has done really well): I was relieved as I thought he wasn't doing as well as he had been as well - more sweaty and not taking as much milk as the previous week... He is now on two diuretic meds which will take a bit of pressure off his system.
So all in all they were happy with him and at this stage surgery is still scheduled for mid October.
I wasn't feeling all that happy about the medication for the first couple of days as Oscar was being sick after having it and seemed to be very sweaty still, so i had the community nurse, who monitors him between clinic visits, come out and see us yesterday. We had another weigh in and it turned out that he had lost 130g in only three days since Tuesday and had therefore actually only gained 80g in the previous 10 days, not the 180 I thought he had (most babies at this age put on around 300g per week).
Needless to say I was gutted about the backwards step, but happy to know that he obviously was carrying extra fluid (which had evidently contributed to the higher weight gain but not been recognised as a cause), and so it was definitely the right thing to put him on the diuretics. Our next step is to meet with a dietician next week and get him started on some weight boosting powder which will be added to his formula.
Our nurse also thought Oscar wasn't looking quite as well as usual, so we will go back to heart clinic this coming Tuesday, rather than waiting the usual two week gap.
So there is a bit of a conflict of factors: Oscar eats less than he should because he gets exhausted faster due to the heart condition. He also uses more of his calories than normal with his heart (and other organs) working harder and faster than usual. And they want him to gain weight so he can have the problem fixed! But he is doing his best and that is all we can ask...
Audiology.
This was a follow up appointment to finish some tests that we went for in August. No change: he has reduced hearing due to fluid in his middle-ear which is expected with cleft babies, but the underlying audio mechanics are fine. He will start wearing a hearing aid shortly... the one they had there for him didn't actually work, so just waiting for a new one to arrive! It is a small box which clips on to a head band that goes around his head. There is only one aid needed to increase his hearing and it can go anywhere on his head as long as it is firmly against the skull bone - the device transfers the sounds to the bone and by-pass the blocked middle-ear where the fluid is sitting. The inner ear is normal, so no long term hearing problems, just muffled hearing without the aid until the palate surgery at 10-12 months.
The idea is to wear the aid when we are talking to him or playing music, have guests etc, so that he can hear normally and start to engage with sounds and language. Apparently there is an American website where you can purchase modified caps which house the hearing aid which would be nice when we're out and about - so I'll be checking that out after I finish writing this!
Cleft Dental Clinic.
More anticipation before our dental visit as I was anxious to see what the orthodontist would have to say about his progress after our big efforts over the past two weeks to put the taping across Oscar's upper lip over night to help get ready for his lip repair surgery. It's been a real struggle for me in particular, but Oscar has accepted the taping and we're getting a good 10-12 hours overnight with it in place. It pulls the two parts of his upper lip together and helps create a kind of a step down under the nose (if you pucker your lips then press down on your upper lip beneath your nose you will get an idea of what we are trying to achieve). They would ideally like him to have it on for longer each day, but I'm not prepared to have it on during the day and have him struggling with it... small steps, small steps. Things had moved well, so progress made and we'll keep going with the regime!
Fi xx
The mamma-cat (Fi) is doing a really great job looking after Oscar and keeping up with everything while I swan about pretending to work. Oscar is a real happy little trooper and it is lovely to come home to them - usually sitting on the couch having a cuddle and waiting for me!
Brennan xx
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