Update 7.23.15

First of all, we'd like to once again thank everyone for your concern about Helena. It makes us realize just how lucky we are to have everyone in our lives, and how much you care for us and her and it really does help and mean a lot to us. Thank you. 

So here's the latest update - Helena's doctors had decided not to do the catheter procedure on Monday at the last minute, but then on Tuesday, as I was washing up to go in for a visit my phone rang. I pulled it out and it said it was the NICU calling. Turns out they were calling to tell me that they decided to do the procedure after all and that Helena was going down for it in about an hour.

That was rough. It was more the surprise than anything else. It really caught me off guard, but they said they hoped it would help increase her oxygen saturation. 

I called my husband, he came to the hospital and Helena went down for her cardiac catheter procedure.

The procedure went well in that they were able to make a hole in the upper chambers of her heart bigger (a hole that is supposed to be there, unlike her VSD) to increase the amount of blood mixing in the hopes of raising her oxygen saturation levels. They also tried to stretch out her pulmonic valve, but it's just so small that they weren't able to do that with the catheter. They took a bunch of pictures and measurements and got a lot more information than we had earlier by doing the procedure too so that was good. Helena was under for it, but was stable the entire time and did great.

Since then, her oxygen saturation levels haven't been great. They've been ok and better than they were, but when she cries or fusses they go down significantly and since you can't really tell your newborn "Hey, don't cry!" we have to figure out a way to get the baseline levels up high enough so that when she does cry her levels stay where we want them.

She is still on the ventilator while they try a couple of other options to see if they can increase her saturation levels but there is discussion of doing surgery to install a shunt that will create another way for her blood to mix and hopefully increase her oxygen saturation. We're taking it day by day and seeing what her body does and how she responds to different things. Her doctors are all working together to determine what's best for her, and they're not rushing into anything which we like. 

Helena is stable and comfortable, which is all we can hope for while we figure out what the next step is going to be.