wednesday 10/9/2013

No progress. Ava pulled out her NG tube right when I showed up today. The nurse put it back down which made Ava gag and cry. Ava is back on oxygen to give her some support while she's getting through the cold. I think about half the NICU unit is in isolation for the cold/rhinovirus. As a result the unit imposed respiratory precautions early this year and children under the age of 14 are not allowed to visit until sometime next spring....so Sam and Will cannot see Ava until discharge. Droplet isolation is the worst because Ava does not get human touch because everyone has to wear gloves AND she does not get to see faces because everyone has to wear a mask. The room will be on isolation as long as ANY of the babies have the virus or symptoms of it. So I am pretty sure Ava will be on isolation for the rest of her time in the NICU. We need to get her feeds into her stomach from the NJ tube but no doctor wants to make changes while she has a cold. They are extremely cautious with Ava, maybe too much so. There's a new doctor on tomorrow so I'm hoping we can start making some movement soon. Ava is off the morphine. The clonidine is still being weaned. We are having to go super slow with it because her blood pressure shoots up if it's weaned too fast. We don't even have a g-tube surgery date or even ballpark so really, we cannot even see the light at the end of the tunnel yet. I'm really tired of Primary children's raising my baby. I feel like her discharge will feel like an adoption from an orphanage. 

On other fronts: Our whole family is showing signs of PTSD associated with the adjustments. We are barely holding it together. Even Sam was crying for baby Ava and had a very emotional day at pre-kindgergarten on Monday. They are showing a lot of signs of stress in their behavior. The boys are regularly waking up in the middle of the night and Shaun and I just can't sleep. Shaun is at risk for being furlowed since he works for the government. Pray THAT doesn't happen. THe support group I go to on Tuesdays is just plain depressing. Parents are talking about which organs might be useful for donation when their child passes, another is waiting hopeful for a heart transplant. We all laughed at the discomfort of others when they complain about something "trivial" in our presense. One girl said she gave her friends the liberty of saying "Thank goodness we're not the Johnsons." It's all relative.

Encouragement sounds like a broken record or at the very least a meaningless cliche. 

HOWEVER! I was encouraged today be the kindness of a stranger. Sweet lady in Oklahoma sent Ava a magnificent handmade quilt and card. LOVE IT! Pictured here. 

  at preschool.

Sam has been dying to do his hair "spikey" for as long as I can remember. He finally did it all by himself and even hairsprayed it up. I think he did a good job. No one helped him. He was so excited to show his friends at school. He kept feeling the top to make sure it was still "spikey" hehehe.  So his hair has pretty much been a disaster since this day because he wants to do it himself.