Siblings and a couple updates

First, a couple more details on the procedure in the morning - the stent that they plan to put in to keep that hole (ductus arteriosis) open needs to be a certain size and the prostaglandin (PGE - the drug that keeps it open for now) keeps the hole open too big so they need to take her off PGE for a number of hours before the catheter surgery tomorrow so that the hole closes just enough for them to put the stent in (so it can close on the stent and hold it there). So in preparation for this they took her off PGE yesterday for about 10 hours and monitored her by ultrasound to see how fast the hole closes for her (normally takes 24-48 hours for the hole to close entirely). She did great and they got a good feel for how fast her hole would close so they now know how far in advance to turn off the drug before surgery (actually, they just turned the PGE off a couple hours ago in prep for the procedure in the morning).

Also, there are special veins surrounding the heart called coronaries which normally receive blood from the flow out of the left ventricle. Sometimes with Pulmonary Atresia, the pressure in the right heart causes some blood to go into these coronaries from the right heart – which is ok as long as there is blood coming from the left heart too - but if those coronaries close off to the left heart and become dependent on the right heart for the blood, then they need to leave the pressure in the right heart and cannot open the pulmonary valve as planned. So the very first thing they will do once they are in there with the cath is to check the coronaries using a special die to ensure that blood is coming from the left heart to those coronaries. They are pretty confident from the ultrasounds that there is no block from the left heart but they need to make sure for sure.

Ok now on to siblings.

The rest of the kids got to meet Shelby over the past couple days. There is a unique kind of excitement when siblings get to meet. Do you think Lyla is excited about finally having a sister!?

Showing them how this all works.

Only 2 could come up to the CTICU at a time and we love it that way because the siblings got to introduce each other to Shelby. The excitement to show their siblings their sibling was outrageous. Here’s McKay teaching his bro the details of the heart. You really should see the video of this (Cubby then tried to do the same with Bennett but Bennett was not quite as attentive:)).

When Bennett came in, I asked “where’s the baby” and he quickly pointed to Kristi’s belly. “Nope, look around and see if you can see her.” His eyes gaze around the room and the moment he spots her he just lights up! Kristi caught his face below at that exact moment.

Also, she can wink. She’s kind of advanced.