So sorry to have gone so long between updates.... :)
Juliet's weight last night was 6 lbs 10 oz. She can probably stop losing weight now. She looks like herself again. She is frequently alert and sometimes playful - until she gets angry about the breathing tube down her throat, chest tubes, etc.
Events over the last 3 days - Jules pulled out one of her chest tubes on Saturday night. The team tried unsuccessfully to reinsert it right then and then decided to leave it out. By Monday morning, the fluid was starting to collect (a little) in her lungs, so they put the chest tube back in. Both chest tubes are now draining fatty fluid from her lymphatic system. The "fat" is coming from the breastmilk that she has been getting since Sunday. It is a little confusing - even for me- how this works, but as a result, she now is eating a special formula that will bypass her lymphatic system. Hopefully, this will stop the new leaking of fluid into her lung space. They are still trying to rule out a blood clot in her superior vena cava (a main vessel of her heart) that could also be contributing to fluid build up. Because of the all of the above, she is still on the ventilator. She will have another echocardiogram to check her heart and for the clot.
So, even though it is great to see Jules looking so good on the outside, she still has a long road to go to get her "inside" caught up.
Oh yeah - other good news - her intestines are definitely working. I changed my first stinky diaper on her on Saturday (only took 4 1/2 months :0 ) and she keeps filling them up with pride!
Glad to hear that Juliet is back to her own weight. It sounds like the doctors and nurses are on top of things and working on getting things corrected. I pray for their continued knowledge to care for Juliet. It also sounds like Juliet has had enough of the tubes, bells and whistles. Glad to hear that her intestines are "producing" too. I feel sure that she will continue to fight through whatever comes her way. We are praying for her continued recovery and the fixing of all that is still wrong. Know what we are with you and Chris through this journey until Juliet comes home. We pray for you all.....love and hugs....aunt laurie
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