Yesterday Lilly started to become extremely irritated. Nothing the nurse and I did seem to put her to ease. We tried medication, singing, rubbing her hand, and just talking to her. As the day went on her blood pressure continued to rise. They decided that it was time to take the chest tube out and this was probably the cause of her anger. Also she was not draining fluid so it needed to be removed. They removed the chest tube which was heart wrenching to watch. Lilly is not able to cry but her face tells us she is. After the tube was removed her blood pressure went down and she was more comfortable. She was finally able to rest. We also noticed that one of her IV lines they put in her wrist was oozing blood. I had to help the nurse remove the bandage and the blood from Lilly’s hand. I once thought I had a strong stomach but after watching your child go through medical treatments like this it makes your stomach very weak.
Today Lilly is stable. We are not going to push her off the ventilator anytime soon. We are giving her time to rest and heal. Also Lilly is more swollen today so they are giving her medicine to help her lose”the water weight”. We are also going to increase her feedings of breast milk. This is exciting because she has been just getting “IV Food” and 3cc of breast milk. They said that they will try again later next week to wean her off the ventilator.
Yesterday we received a special gift in the mail. Thank you to the person or persons that was so generous and thinking of us. We really appreciate it. Thank you.
Thank you for your continued prayers.
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I was thinking of you all night long because I actually watched a TV show about a family whose little girl was born with Turner's syndrome. It is amazing to me all that these little souls can do- they are so strong!
ReplyDeleteLittle Lilly is truly an inspiration to me & our family- keep growing & fighting sweetie!
I'm so glad getting her chest tube out made her more comfortable.. I could always tell those bothered Bela so much and she always was more calm when they were out. It is SO hard to watch them get pulled though. I'm glad that's done. More and more will continue to come off and every time something gets taken off it's the best feeling!
ReplyDeleteHang in there.. It sounds like she'll need a couple weeks to recover and then you'll have her home with you.
Lots of prayers are coming your way..