These last few days have been a lot of learning and discernment. Unless there is a last minute change, we will be bringing her home on Monday.

We’ve started practicing giving her medicine and caring for her ourselves. We’ve been slowly moving her from IV medication to oral medication (delivered through a tube). We’ve started to be able to do simple things like change her diaper – we couldn’t do that before because the IV was originally placed where the umbilical cord was attached.

We’re more comfortable with fixing her breathing mask and the ins and outs of that. Our BiPAP rental is going to be here Friday and we will transition to that over the weekend.

I could bore you with the list of things for us to do, but I’ll stop there at the big stuff. Next we will do what’s called a “room in” where we will be at the hospital 24 hours straight to get the full picture of her care (Jen and I can split this time). At this point, the medications have been reduced to the bare minimum since we are not moving towards surgery. So while the hourly care to-do list isn’t huge, it will be very helpful to get that practice in before she comes home.

The last medication that she will be taken off of is one that essentially allows her to continue to live. It keeps a valve open in her heart that allows the blood to flow properly with her HLHS condition. Once this medication is no longer administered, the clock starts.

This is where we will truly walk in faith. Where we walk into the unknown.

In cases where this medication is stopped, they have seen the valve close months later and they’ve seen it close in a matter of hours. It’s such a large gap in time, they can’t give you an estimate. It’s possible we could have a good amount of time with Dolores. It’s also possible she barely makes it home.

During the last couple of days, we have been working with the Child Life Team to create mementos. Little keepsakes that this team will create for you to have. Stuffed animals with a button inside that has her heartbeat. A necklace with her fingerprint. A little artwork of a butterfly created from her footprint that’s framed. We’re so appreciative of these little gifts.

I’ve been trying to capture as many pictures and videos of her as I can in hopes that I can make a little video for us to have. I got this professional camera last year with the plan of using it more for my professional work. And yes, I have, but not as much as I thought. The gift it has truly brought is capturing moments with my family. And now here with Dolores, I’m so glad I have it to capture these unforgettable moments. Add it to the list of things that God knew we would need.

All things are leading towards the road home. Lord prepare our hearts.

We had a wonderful gift yesterday, where we got to remove her hat (it keeps her mask in place) and have time with her mask off in short windows to just enjoy her beautiful face. You can see some of those photos attached. She’s got some hair too!

What breaks my heart is that she doesn’t get to experience the world as a normal baby. She started opening her eyes a little more and you can see her looking around at all the gizmos and gadgets that make up her room and the mask on her face. I wish she could have even a little time to experience life as a normal baby. Life with no mask or tube down her nose. She’s definitely happier and more peaceful with it off.

Please pray for us as we near the journey home. Pray for our hearts and for the right words to speak to our kids about this. Most importantly, pray for our sweet Dolores. Pray for that miraculous healing when we bring her home.