Day 83 - Three Pounder

I've been waiting to say this for so long... Chloe is now over 3 pounds! Yeah! It took long enough, but she's finally there :-) 3.2 pounds to be precise. The doctors are a bit concerned with her slow weight gain over the past couple of weeks. They stopped her feeds twice during that time, though (once because of fortifier intolerance and second for eye surgery), and she dropped weight both times. I think she'll start putting on weight more now that she doing well with feeds and not fighting her tube. They did increase her feeds from 8.5 to 9cc's per hour. This is 7.3 ounces per day. Chloe's done so well the past few days that I feel greedy asking for more but let's pray that she continues to grow and improve her lung function. She also has her first follow-up eye exam on Monday or Tuesday so we must not forget about that. They said it would be two weeks before they would really know if another surgery is needed. A good report on her first exam would be nice, though, don't you think?

Last night's visit was interesting. It started with me lifting the cover to Chloe's isolette and immediatly witnessing her (laying on her belly) lift head and shoulders and roll off her little belly pad. What the...? What kinds of steroids did they give this baby? Apparently, she was upset about losing her pacifier (her new best friend since the tubes are gone) and expressing herself with a little tantrum. She continued through her care. I think I was staring wide eyed and mouth agape into the isolette as the nurse completed her care and was shaken from my trance when she asked, "Do you want to change her diaper?" Usually, I'm all over that but this wild little creature kind of scared me. "I'm not sure!" (Giggling) Fortunately, I managed to Mommy-handle my little wild thing enough to get her diaper on (albeit sloppily...thank goodness there was no poop!) Hmmm. "I wonder if she'll let me hold her," I started to worry. But once again Chloe stroked my Mommy-ego. As soon as we took her flailing little body out of the isolette and placed her on my chest it was like we flipped a switch. Immediate stillness. She was a happy little kangaroo and didn't so much as twitch for two solid hours. Little stinker. I can't even say how happy she makes me. Keep up the good work baby doll!

Day 82 - Doing Well!

No time to post today but just wanted to let you all know that Chloe's still doing well. Thank you for all your continued prayer and words of support.

Love to all,
Cyndi

Day 81 - Look at that little mouth!

As of this posting Chloe has made it 20 hours without a breathing tube! They decided to do it yesterday and I wanted to be there when they did it. Fortunately, Dave had the day off for Veteran's Day (Happy belated Veteran's Day to all you veterans out there, by the way!) so I didn't have to wait until after dinner to make it to the hospital. I made it there around 4:30pm and they extubated her right around 5pm.

She seemed to be doing well right away but didn't like that her feeding tube was still in her mouth and was actually getting pretty ticked off at it. I was standing at her isolette with one hand on her head just watching her and after about an hour or so she'd had just about enough. She reached up for her feeding tube and, before I could open the other isolette door and grab her little hand, she yanked it right out. So the nurse moved her feeding tube (which goes down to her belly) from her mouth to her nose. Getting it in there was definitely NOT a fun procedure but I think Chloe will be much more comfortable in the long run. And as an added side benefit we get a full view of her beautiful little mouth. Look at how amazing she is!! You absolutely MUST click and enlarge this one!

Her upper lip is heart-shaped - I LOVE THAT! Her eyes are still puffy from the ROP surgery but that will go down soon. And her cheeks are still red from the neobar tape but I imagine that's faded by now, as well. I took this picture while the nurse was preparing her new feeding tube, so she's sans feeding tube here but she looks just about the same with it since it follows her canula tube and into her left nostril.

Ignore my hideous hands. After all the washing, scrubbing, disinfectant foam I'm using they look like crocodile hands. I just thought this would be a good one to get a better perspective of her size.

Look how I've grown!

The smaller prints were taken on 9/11/09 and the larger ones were taken on 10/20. We are truly blessed!

Day 80 - Recovering - Updated

Update: Extubation today around 4:30! I'm trying to get out of here so I can be there!!


The opthamologist seemed satisfied with the surgery yesterday. Sometimes the ROP isn't completely stopped by surgery so we're praying that it stops. He did say that Chloe will almost certainly need really thick glasses. We'll be more than happy to have a little girl running around with thick glasses. We just hope the ROP stops because that could have devastating effects that we won't think about right now.

Chloe seems to be doing well. The nurse said that she's her old self again. She threw a fit this morning when she filled her diaper causing it to leak into her bedding. :-) Hopefully, they'll start feeds again this morning and they're still weaning down her ventilator. We should find out after rounds this morning their thoughts on extubation. Yesterday they made it sound like they'd try it again as soon as they can wean down her ventilator - maybe today!

Day 79 - ROP Surgery

They realized yesterday morning that Chloe was due for another eye exam and decided to hold off on extubation until after her eye exam. It's a good thing, too, because the eye doctor decided that Chloe progressed to Stage 3 ROP and needs laser surgery. I haven't had a chance to talk to him (the eye doctors are very elusive) so I don't know too much more. We have lots of questions about how bad her ROP is, the procedure, long-term effects, etc. The surgery is scheduled for 3:30pm ET. They'll give her pain medication and a paralyzing drug so she doesn't move. They'll turn up her ventilator really high since she'll be paralyzed. She's probably pretty hungry right now. They had to stop her feeds this morning because of the anesthesia :-(

After the surgery she should recover pretty quickly. They'll restart her feeds and wean her ventilator settings. Unfortunately, they'll probably have to do another round of steroids to try and get her off the ventilator. We want to limit steroids - they're not really good for her - but we also want to get her off the ventilator since her body seems to be fighting it. It's a constant balance of what's more important. Praying praying praying.

Pictures

Lifting Chloe during her care. Her isolette has a scale inside so that we can get her weight without removing her from her bed.

Getting bigger! But still tiny :-)

Snuggling with her snoodle doll.

Sucking her thumb like a champ! She was going to town on that thumb all through kangaroo care last night!

Day 78 - steroids

They started Chloe on steroids again and caffine citrate in hopes of extabating her today. Please pray she's strong enough to stay off the ventillator!