Cant catch a break at all.

[kit10grl]

It has been a busy week for us with a lot of clinic appointments and checkups. DD has had a development assessment. They have put her gross motor skills at around 7 months but the rest of her development somewhere around 10 months. This isn't a huge surprise as its about where I had judged her to be. And considering she initially spent 7 months in hospital being 6 months delayed is pretty good going. We were discharged from the hospital clinic and transferred to the development centre. Big step forward.

Then the next day we had cardio clinic and her cardiologist has told us its looking pretty much inevitable that she will need more heart surgery in the new year. One of the issues which they corrected in her initial open heart surgery at 8 days old has a possibility of reoccurring as the child grows. We knew it was possible she would need more surgery we were just hoping she could have a longer break than this. It wont be an open procedure as they can use a balloon catheter to expand the previous repair so it has slightly less risks but its obviously still heart surgery so its very high risk.

This will be her 6th surgery since she was born. So much hardship for such a tiny happy wee thing. When does it stop. She deserves to just live her life.

Also now I know her heart isn't functioning correctly I am terrified of her heart stopping before the surgery. So I am back to that first night home from NICU poking to make sure she is still alive while she is asleep. Then I'm terrified she might not live through the surgery again. How much luck does she have? Last time the odds were a 1 in 25 chance she wouldn't make it off the operating table and she made it. How many times does luck like that hold out? When are we the unlucky family? I saw so many other families in the PICU go home without their babies last time we were there. Not sure how I will cope going back into that environment again. I truly thought we were properly past ICU.

 

[jandksmommy]

I a sorry she (and you) have had to go through so much and have more to go through yet. I wish I could hug you and tell you it would all be fine but I know this wouldn't stop the worry and sadness. She has had so much strength and determination to have come this far and done so well, have faith that her strength with carry her through what is still to come. I will be praying for her.

I was the same with constantly waking mine to make sure she was ok... so I bought an Angelcare monitor so that we could both sleep more soundly. If you do not already have her sleeping on one, I would suggest it may give you peace of mind while she sleeps.

 

[kit10grl]

Thanks. Someone else just suggested and angel care too. I actually do have one but had just been using it as a normal monitor for ages. Cant believe I didn't think of turning the mat back on lol I will sleep much better tonight I think