Monday, January 29, 2007

Feeling anxious - ped card at 9.30am tomorrow

We have a follow-up appointment with Dr Lewin tomorrow. It is to discuss how Wren is doing and the continued turbulence in the arch and inflow-tract area. I have been reading about inflow tract obstruction (subaortic stenosis or sub-vulvular AS) and its not too great. It all requires OHS (open heart surgery) to correct it and its recommended not to leave moderate stenosis as the high blood velocity (indicated by turbulence) can lead to damage of the valve leaflets over time.

I am feeling dreadfully anxious and pessimistic.

To top it all I think Wren looks good physically but I want him to seem happy. Can a 6 week old seem happy? He smiles occasionally but they are those elusive first smiles that don't seem personally directed. He could almost be smiling at the ceiling or the curtains. I don't feel he is energetic or happy and alert as much as I expect. I know, its ironic that I want both sleep and not-sleep but I just want him to be normal and healthy and happy.

I read a post on the Babies with Heart Problems Board about a baby born on the same day as Wren. The poster wrote her baby is "smiling and cooing" - hoping this meant the defect is not severe. I can't say Wren is smiling and cooing. He looks around with interest but that's about it.

I will feel better if tomorrow is over and surgery isn't on the schedule.

4 comments:

Anonymous said...

Hi Shannon,
Would it make you feel better if I told you that a "social smile" and cooing are 2 month old skills? Wishing you all the best for the morning and I hope you get some rest tonight. Sleep deprivation can make the world seem like a very dark place. Take care. - Josephine

Izabell said...

we are hopeing your apt goes well in the morning. Izabell has an apt at 1045 on the 6th floor for ENT we could meet up for coffee after the apt if you would like. I hope you get some rest tonight, hopefully the swing will help you all rest a little better. Izzy was not smiling untill she was 12-13 weeks old and cooing was later than that.

Shannon said...

Thanks Josephine, it does make me feel a bit better. I had a bit better sleep last night... he slept for 2 hours 3 times which is great improvement but then the wakeful grunting and wanting to nurse every 45 minutes began at 5.30 and I got up at 6.30 to put him in the swing. He didn't like that at all so I am up for the day but he will probably pass out soon.

Shannon said...

Hi Wyndi
I wonder how we could meet up? I dont' know exactly when my appointment will end and I may have to run Josh to work afterwards. I will look out for you around the time you should be checking in - I am not sure whether we will have an echo today. I am thinking maybe not?