Foetal Pericardial Effusion

[MeganJay]

Hey MrsL,

Thanks for the feedback. Yeah 135 isn't detrimentally low, not til it gets to 120 or lower, but it was a bit lower on her scale of normal. Seems to have picked up though.

We're doing okay for now, gotten to 30 weeks which is great because she's becoming more viable. Just going to wait and see what the cardiologist says, but I anticipate she'll come early anyway. My radiologist is quite confident that it shouldn't be anything major but she likes to be 100%, which I am fine with over-investigation at this point.

Just keep swimming...

[MeganJay]

Quick update for those interested in the follow on from this tale. Juniper hasn't fed more than 30ml at a time (sometimes refuses altogether) since birth and has been VERY hard to settle. The short of the long, is that after being passed around between doctor to doctor we finally went to the children's hospital last Wednesday and we have been there ever since.

Juniper has only about 1/2 of her right lung working (she's compensating very well for now) as it is being crushed by her diaphragm on that side, possibly from a very rare condition (about 1 in 3 million chance) called an accessory diaphragm. In addition to this it is possible she also has Scimitar syndrome (or something similar) as she has vessels in her heart which are missing, and some go to the wrong chambers. :/ We find out more tomorrow from the CT/angiogram and then treatment is determined. Her pericardial effusion remains, and she also has an Atrial Septal Defect (she had a PDA too but it is now mostly closed).

I feel like I have been hit by a subway.

[MeNThem]

I only just caught up on what you have gone through - holllllly cr@p!!

Not much I can say to be remotely useful, but, please let me (us?!) know how you go with your future appointments...

Take care - worse being a nurse in the field I'm sure, as you have seen so much and can fear the worst with every turn... xoxo

K/MeNThem.

[~manda~]

I have nothing helpful to offer other than a huge big hug and that we're here if you need us xx

[bumble bees mum]

Thank you for sharing an update on your daughter. You have been through so much and I wish you all the best for the upcoming tests and how they deal with the results of those. You must be exhausted. Sending you big hugs, good luck, hope you can come here to vent and release some frustration with all you are dealing with. Big hugs to your beautiful little girl too, it is so unfair.