While Off The Ventilator, We Finally Heard Kayley Cry...Too Bad She Was Saying She Wanted Back On The Ventilator

Today was a very eventful day. It started off with a somewhat bumpy night. Last night was my 4th night sleeping in Kayley's room. So, I got used to what her heart rate should be during the night. It's amazing how one gets worried when something isn't the same. The previous nights, Kayley's heart rate was always between 130 and 160. 130 is her sleeping range. It rises to around 160 when she starts moving a lot. Well last night, Kayley was topping out around 175 to 180. Let's just say there wasn't much sleep going on. To top it off, we had a nurse that didn't make me feel comfortable. He was relatively new. I know he knew what he was doing, but he just didn't act calm and under control the whole time. It turns out that nothing was wrong with Kayley except that she just had one of those nights where she couldn't get comfortable. Our day nurse very nicely explained to me, "If you had tubes coming out of your mouth, arms, and belly button...plus a bright light on you...plus you were sleeping in 70% humidity, would you be comfortable all the time?" I just shook my head and said, "Good point."

And about that not being comfortable with our nurse stuff, Phoenix Children's Hospital encourages parents to pick primary nurses. Basically, we let a couple weeks go by while getting to know the nurses we've had. Then, we decide which ones we are comfortable with and choose them as our primary nurses. When they are on duty, they will be assigned to Kayley so we can rest easy. We are compiling our list now.

Kayley had another bilirubin test today. Her count is down to 6.1. That's great news. It looks like they will be able to take her off the lights tomorrow.

Next, I was able to talk to the nurse practitioner and doctor about Kayley's grade 2 IVH. She said our next steps are to just watch it. We'll look for signs from Kayley that something's wrong and we'll have weekly ultrasounds to see if it has gotten larger or smaller. The nurse practitioner said that 95% of grade 2's resolve on their own and there is nothing to worry about. The 5% that get bigger turn into grade 3's or 4's. She even said they don't worry too much about grade 3's. So for now, it looks like we don't have to worry. We just don't want to be part of the 5%. Our next scheduled head ultrasound is this coming Tuesday. We hope for it to get smaller so we no longer have to hear about it. And just to correct a point from my previous post about this, if a grade 4 becomes severe enough, they will try to perform brain surgery to remove the blood/fluid or put in a shunt. But that's only in very severe cases and we're very far from that and don't plan on having to discuss it further.

Megan and I had some more accomplishments today. Megan changed her first diaper. Good job, Megan! The picture above shows Megan taking Kayley's diaper to get weighed after the change was complete. They measure everything around here. We also took turns taking her temperature and I was able to feed her a couple times today. We're still not NICU nurse material but we're working our way up there. They are starting to really encourage us to help out so we get some bonding time in. Again, its amazing how scared one can be to care for their own daughter. She just looks so fragile.

And now last but not least, we attempted to take Kayley off the ventilator again today. That's right. Attempted. She was so good for about an hour (she made it 15 minutes last time), but then she really started to labor. She didn't lose her heart rate as fast this time so it wasn't as big of a scare, but her heart rate did go down significantly and she really needed the ventilator back in. While putting the tube back in her throat, the nurse practitioner noticed that her vocal chords were very swollen. This could be what is causing it to be tough on Kayley to breathe. That's a catch 22 with the ventilator. The tube is what's causing her vocal chords to swell. So, they're always going to be swollen after the tube is taken out. Another possibility is that Kayley has a flimsy trachea and it collapses when the tube is out. The nurse practitioner just stopped in and informed me of this possibility as I was writing this post. There is a medical condition she called it but I can't recall it right now. She said it can happen in babies and older kids. They normally outgrow it. So, the next step is to give it a little bit more time. If the next time doesn't bring success, we'll most likely have an ear, nose, and throat doctor come check her out to see what can be done. They may try to give her medicine to take the swelling down the next time they try it. Even though this time it didn't work, the best part about it was that during the hour Kayley was without the ventilator, we heard her cry for the first time. I can't imagine a sweeter sound at this point.

**The first photo is of Kayley gripping her feeding tube. I don't think she likes having it. The second picture is of Kayley lounging around. The third is of Megan weighing Kayley's diaper.