Kayley had a great day today. It started off with the nurse coming in and getting the bilirubin lights off of her. Her bilirubin count went down to 5.2. That is a safe count for now. As they have said, it will likely come back. But for now, she's very cozy in her isolet as they can use more props to make her feel like she is in the womb. She looked so comfortable today and it showed as she was very peaceful all day.
When the nurse practitioner and doctor came to see her today, they made a few changes. First, they saw that her stomach was digesting food pretty well so they upped her feedings to 3.5 cc's every 3 hours. It was 2 cc's every 6 hours. That's a big step for Kayley. And as of tonight, she has done very well. She has had little left in her tummy by the time her next feeding arrives. Now we're just hoping for some poop. If you've never seen anyone so ecstatic to see poop, I have a feeling you'd want to see the doctors, the nurses, and us when we finally see that Kayley poops. That would complete the process. Her stomach and intestine would prove that they work. I'm sure I'll have a big post for that event. I'll try not to have pictures.
Also, when the doctor was in this morning, he turned Kayley's ventilator down to zero breaths per minute. He said she really doesn't need the breaths at this point. She's doing great on her own. All she needs is the machine to help her with the ones she's taking on her own. So basically, the ventilator senses when she is taking a breath and then helps her pull the air into her lungs and then push it out. That setting stayed until about 6 pm tonight. She wasn't having a problem at all but her blood gas test came back unchanged. Since it was unchanged, they decided that they really didn't need to have her work harder to have the same results at this point. They are giving her more rest to try to get off the ventilator again next week. Rumor is that it will be sometime after Tuesday.
They are also preparing to get Kayley off the ventilator by making sure there isn't anything "brewing" inside her. She has a lot of secretions in her lungs that have to be suctioned out pretty often. This is very normal because the tube in her throat causes it but they just want to make sure. They are checking for any type of infection or pnuemonia. Hopefully she has neither.
We also had some positive feedback from the nurse practitioner about Kayley's IVH. After examining her this morning, the nurse told us that her head looks good and is showing no signs that the bleed is getting bigger. She based her thoughts on the fact that Kayley's head still shows a ridge where her bones are still growing. If the bleed was getting bigger, her head may swell and start causing the ridge to disappear. She also mentioned that her fontanelle (soft spot on the top of her head) was still soft. More bleeding could make this harder.
The last event for today was a hard one. I finally took some nurses' advice and went home to sleep tonight. They kept pushing me to do so because I guess I started to look tired and worn down. I spent the last 6 nights in Kayley's room. Even though they say it's good for the parents to bond with their child, there is a line. So, I will try to get some sleep at home tonight (although I think I'm more worried here) and be back to the hospital early tomorrow morning to meet with the doctors about their plans for Kayley for the day. It helps tremendously knowing that Megan is just a floor away. I can now see why Megan has not wanted to be discharged from the hospital. But, once Megan gets home and we set a schedule and get use to it, I think it may be easier on us.
**Sorry, no pictures today. With Kayley off the bilirubin lights, it was hard to get a good picture because it is kept so dark in her room. I don't like to use flash because it seems to disturb Kayley. We'll have to get some while they are examining her because they normally have the lights on then.
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