Tuesday

Nov 27th

The night went smooth with Noa...and she looked peaceful when I saw her. I won't lie, it's discouraging that she's had a set back...but she always seems to recover. She has been called strong by more than one doctor.

The plan for Noa today was to get an ECHO of her upper chest area and see what her heart and lungs look like and at the same time they looked to see if she had a blood clot in the old catheter sight (which would explain why her head and upper body remain swollen even when the rest of her body drains).

The pediatric cardiologist thought her heart looked good. It was functioning well and it wasn't thickened due to all the work its been doing and meds she's received. Her lungs also looked well- the hypertension wasn't causing her lungs to push the blood away. That is very good news.

They did find a blood clot in her chest...which is not unusual with an ECMO patient and having the dialysis catheter in her chest as well. There doesn't appear to be a concern with it dislodging, but they don't want it to grow so they have started her on a blood thinner called Lovenox. This keeps it from growing and allows the body time to 'deal' with it. Lets pray it doesn't grow and her body gets past this quickly.

They were able to put a Foley catheter back in Noa as well. 

We continue to hope and pray that her kidneys begin to function. Like I told a friend of mine, I will just crumble in joy and grateful worship if it happens. 

Other than that....they are keeping an eye on her right leg...it is a little more swollen than the rest of her body. They think its because its not getting the same blood flow due to the dialysis catheter being in that leg. They are trying to slowly bring her vent settings down and still keeping a close eye on her gases since the episode yesterday. It doesn't appear that she's quite gotten back to where she was before. They have her back on dopamine (a heart med) that they had weened her off of...but are slowly decreasing the amount still. We'll let you know how it goes.

The other two beautiful babes are doing pretty good. They did end up getting a little cold...but it doesn't seem to effect them except when they go to bed at night. We've been keeping them huddled in the room or in the fresh air. Not worried about them and actually took them to the zoo with some friends. It was fun (and cold!) and so nice to do something fun with them.

Again...thank you for hanging in there with us. I have the sense that many of you feel like we do, that we really are in the midst of a marathon! I'll try and take my own advice when I say, lets go to God to be refreshed and encouraged.

XO