Friday, November 29, 2013

General Update

Lily did well last night, despite the nurse who was caring for her not knowing how the lower portion of the blanket she was wrapped in became soaked in some fluid. She had a dry diaper, so that wasn't the problem. If Laura and I hadn't pointed it out, she probably would have let Lily sit in it all night, as it had been that way for a while. The nurse came on duty at 7pm and we arrived a little after 9pm. Needless to say, it wasn't very comforting having to leave her in the care of this nurse. If she missed something so obvious, how were we to know she didn't miss anything else?

This mornings visit was much better. Lily's nurse for the day, Kathy, is wonderful and seems to truly care for her. Lily's blood gases were up a lot, so they lowered her oxygen support on the ventilator, which means that she was pretty much breathing on her own without support. It shouldn't be long before she is completely breathing on her own! This will eliminate the big tube that is currently in her mouth. She has one other small tube, to feed her with, which they can put through her nose and down into her stomach, freeing up her mouth.

Lily has started to drink a little of the breastmilk that Laura has been pumping and she is tolerating it well. They plan to increase the amount they give her as well as the frequency.

It seems that everything about her is progressing well...except for the damage to her brain. They have stopped the seizures with medicine and they are finishing up another EEG today. She is getting another MRI next week which will hopefully give us a better picture of where she is at neurologically. The doctor is very up front with the reality of the damage (which is good) and he informed us that whatever damage there is, the brain won't be able to heal itself. But...where the brain itself cannot, we know God can! So please continue to pray for her. We should have the results of the most recent EEG tonight or tomorrow. Some positive news would be most welcomed after yesterday.


  1. oh Danny, my heart is aching for you and Laura. I am 36 weeks pregnant with my own little girl and I cannot imagine what you two are going through. I'm praying so, so hard and will offer up all the little suffering that comes at the end of pregnancy for Lily to be completely and miraculously spared from brain damage, and for your comfort and strength. Please be assured of our prayers and sacrifices as a family during this Advent season. Jenny (Senour) Uebbing

  2. We are all praying for Baby Lily and trying to get her story around to help for more prayers...praying that nursing care will be a little better as well. Praying for attentive and loving nurses. I used to work as a CNA and whenever I saw that a nurse (or nursing assistant) started to become 'hard hearted" in their job, I would always say that it's time to go and find something new!

  3. Praying for you all! May sweet Lily make a full and miraculous recovery!

  4. God bless your little baby girl!! I hope she was Baptized!!

    If you go to the following web site: you can obtain a free rose petal for cures and conversions, blessed by JESUS and Our Lady, at The Apparition Site of Our Lady of The Roses, Mary Help of Mothers. Once you obtain the blessed rose petal, you can touch Lily with it and pray, and most importantly have faith, and, if it's God's Most Holy Will, she will be cured!!

    God bless you and your family!!!