Bigger and stronger every day

Maddie has had several really good days in a row. Seems like every day she is getting the “best gases of her life” which means her little lungs are doing their work exactly like they should. Luke was able to leave on Tuesday and stay at home with Dillan for several nights - they are having so much fun. I plan on going home over the weekend and playing with my lil man non-stop.

They are still weaning Maddie off of the conventional ventilator. She has been on pressure support since Wednesday morning and is doing great. They were able to drop her pressures again last night and she did really well.

She is still draining a ton of fluid from her chest tubes (between 300-400 mL/day) so we started her on a new therapy last night to see if we can get her lymphs to close off. Hoping to see some drop off in fluids over the next couple of days. Once that happens, we can talk about feeding her.

We also gave her another dose of her diuretic yesterday and she has peed out most of the extra water she was retaining in her head, arms and torso. Last night, I could actually feel her skull, not just huge pockets of water.

I gave her a sponge bath last night - her very first officially bath. She did great - threw a fit just like any newborn does during their baths. Afterward, I helped change her linens and flip her over and get her all settled for the night. When i left for bed, she was sound asleep, looked rested and was sucking on her breathing tubes like they are her binky. it was so great to leave for the night and see her being very normal.

She has more awake and alert time each day - we spend a lot of time singing and reading books. She loves to hold my finger while shes awake and starts to cry if i have to pull it away. Her cries are pretty pathetic - because of the breathing tube, she can’t actually produce any sound. So she can throw an amazing fit, but you would never know it if you had your back turned to her. Poor thing. I’m sure she’ll make up for it soon enough.

The plan over the next couple of days is to continue a slow wean from the vent, a slow wean from her morphine and to try to get her chest tubes to dry up. That these are our concerns now is HUGE progress from where we were last Friday.

We have experienced so many answered prayers these last months and thank you so much for loving us all enough to petition God on our behalf, continuing to read and support Maddie and for all of your kind words of support and encouragement. We still have a long road ahead but today is going to be a good day.

Our little thumb sucker

Sound asleep