Tuesday, May 19, 2009

Chloe on May 17th

It seems like a lot has happened since my last update. Joe, my husband, has been home from working in New Mexico for a few days, which has helped in so many ways. We have been able to lend support to Jennie and Lance more as a tag team, watching Kadin and Sierra, taking turns being with Chloe, and just offering support to each other. I really had gotten to a point where my body was starting to yell stop! and Joe was here to give me a bit of a break.

Chloe has had some ups and downs since coming to The Children's Hospital. It is hard to believe it has been a week ago today that we made the move. She is in a 'pod' that cares for three babies, and is on a waiting list to be put in a little private room. These rooms are still roomier than where we were previously so even that is a plus.  The staff has been pleasant and is quick to share information and educate when necessary. When we arrived here, Chloe was put on a ventilator to help her use her lungs more efficiently for a while. As I understand it, it aided her breathing as she fighting the infection. She has earned her way off the ventilator, now has something called a CPAP, which offers a bit of oxygen and keeps the trach tube a bit moist and still puts a small amount of pressure on the lungs. So, progress has definately been made in that area. Feeding has been an area of concern in a couple of ways.  Chloe has pulled the feeding tube out of her nose twice since being here, and on Sunday when I was watching her, milk just started shooting out of both nostrils, totally undoing me! The respiratory specialist walked in at just that moment and was able to suction everything away before it caused a problem, but the warning lights did go on. Chloe was observed overnight and x-rays were done yesterday morning. The feeding tube that was sitting just past the stomach in the intestine had snaked its way back into the stomach, so Chloe was sent to x-ray to have it placed correctly. After that procedure, Chloe has to be placed on her side in order for gravity to help the tube get to where it really needs to be and stay there. After about four hours, another x-ray is taken to be sure all is as planned. Chloe decided not to play by the rules yesterday and did not accept the tube as it was placed. It went right back up into the stomach, which was not what the doctors wanted, but since she has not been having a tremendous amount of reflux, may be a blessing of sorts. They have decided to leave the tube in the stomach, hoping that Chloe's stomach has grown enough to actually function. So far so good today.  I sat with her a few hours this morning and held her for a bit. She mostly slept, as any sort of procedure really seems to tucker her out! Her weight last night was 6 lbs. 12 oz. so she continues to gain weight through it all! A hearing test was also attempted yesterday, which Chloe stopped in its tracks with a nice case of hiccups! I believe they might have tried again today, but haven't heard. 

So, onward we go. Sometimes I am very hopeful and sometimes I am not. That is putting it very simply. I know that Jennie and Lance are stretched quite thin, but continue to put forth unending effort to stay positive. Keep those prayers and beams of light and love headed our way. Lovingly, Nancy

1 comment:

  1. So very sorry about this rollercoaster ride you are on. I know it well. Be strong and take it moment by moment. Chloe is a beautiful little girl. I wish her all the best.