Terribly Poetic

The journey on Norah continues, read the whole story here if you haven’t yet.

So today was another appointment for Norah at the cardiologist. She got weighed again, got another ultrasound/ECHO to checkout how her heart is doing. Not much has changed with her heart. In fact, they believe she has another very small heart issue, however, this other problem is actually benefiting her by lessening the issues caused by the hole in her heart. This other small problem isn’t something they are concerned about and aren’t even treating it. So it’s kind of a blessing in surprise.

So with no change they are once again going to up her medication as well as we are increasing supplemental feeds to help her continue to gain weight. From her previous checkup she had gained weight, just not as much as previous. We got alittle bit more of an answer about possibility of surgery, but the answer was “we’ll wait till January to decide”, so it was really just prolonging this, but it does give more chance to allow her body to “fix” itself so she still has a chance of not needing surgery. So right now we will continue to give medications, extra feedings, extra doctors appointments, extra everything it seems. We are really getting exhausted and could use a night of really good sleep. Please continue to pray for our energy and stress levels as it is all still overwhelming even as it has set in.

The last “fun” thing is that we found out this week about RSV. Before this week I had never even heard of this. Anyways, RSV is basically a type of cold virus. In fact, many adults, and children have had RSV or have at least been a carrier of it without knowing it. They probably just treated it like any other cold. However, to an infant with a Congenital Heart Defect catching RSV could be rather life-threatening. So if you are around us and have a cold we won’t let you hold her. Sorry, it’s not your fault, but Norah could get really sick from you. Don’t take it personally, but our kid is MUCH more important than your feelings. I’m sure you’ll all understand. The good news is that she can be immunized against it. Thankfully Sask Health covers this immunization if your child is “at-risk” like Norah, otherwise it costs $1000 per shot and she will need it every month, especially during cold/flu season. Thanks Universal Health Care!

Thank you to everyone for your prayers and support. As this journey continues we know that we will need more of your prayers and support and know that our wonderful friends will be there for us when we need it.