Monday, June 30, 2008
Sunday, June 29, 2008
Saturday, June 28, 2008
Friday, June 27, 2008
Thursday, June 26, 2008
Wednesday, June 25, 2008
There is one side effect that Kayley could have from the CPAP. Since air is continually flowing into her nose, air could be pushed into her stomach. This could cause Kayley to start rejecting or having problems with her feeds. It may not happen but the doctor just wanted us to be away of it. It's basically a trade-off. Getting off the ventilator is more important at this point.
Kayley really looks so much more comfortable even though she has a mask over her nose. See picture above. Although she is not out of the woods yet as far as the ventilator is concerned (it's still next to her bed), she is looking very strong. Given that the last two times lasted 15 minutes and 45 minutes respectively, she is doing great this time around. Many nurses have stopped by tonight to tell us congratulations. A lot of them I haven't even seen before. I guess the word spreads quickly. They are genuinely happy for Kayley. It makes us feel very good that so many people around here are pulling for her.
Besides the ventilator, we had some more great news today. If you remember back to last Tuesday, Kayley had her second head ultrasound and it came back very positive. The grade 2 brain bleed that she had was shrinking. Today, Kayley had another head ultrasound. The technician told our nurse on the way out that "It looked good." They really aren't supposed to say anything but our nurse kind of got it out of her. She didn't say much, but what she did say was positive. The doctor came in a couple hours later and confirmed the good news. The brain bleed has resolved even further since last week. He doesn't expect to order Kayley another ultrasound until close to the time we are going home. That's standard for preemies. We are very thankful that this bleed did not turn into something really serious.
So, that's pretty much it for the day except that Kayley weighed in at 1435 grams tonight. It was head band aided though. The nurse didn't take it off to weigh her so the number is larger than what Kayley really weighs. If I had to guess, I'd say she is probably around 1400 grams. A perfect weight gain.
Two big things is enough for one day. So far her feedings have been going really well. The nurses will continue to monitor Kayley very closely making sure she's handling breathing on her own. There is still a small chance that she could just get pooped out and decide she's not ready, but we're remaining very optimistic. I don't think that will happen. She's looking very good.
It looks like our next goals are to get to a full feeding so we can take the PCVC out, then start to ween Kayley off the CPAP, and last, we want Kayley to continue gaining weight.
**Just a side note. The nurses told me tonight that there were 10 admissions to the NICU today. Among them was a set of quintuplets and a set of twins. This place is hopping. The mom with quadruplets that they thought were coming this past weekend has stabilized for the time being. They may not be down here for a while. This just shows that Banner Good Samaritan and Phoenix Children's Hospital have a very good reputation when it comes to high risk deliveries and preemies. We are very glad to be here.
Tuesday, June 24, 2008
In my opinion, she looks a lot more comfortable. The last couple times it looked like she was really struggling. This time it looks more natural. So, Megan and I are headed home for some pool time with Drew. I will be back at the hospital tonight to check how things are going and possibly hold Kayley. It all depends how stable she's been.
Monday, June 23, 2008
The doctors turned Kayley's breaths per minute back up to 15. They decided that Kayley was working too hard to try to breathe through the tube in her mouth that they wanted to give her some more assistance. Hopefully this will help her rest more until Tuesday when she is taken off the ventilator for the 3rd time.
Sunday, June 22, 2008
Saturday, June 21, 2008
Friday, June 20, 2008
Thursday, June 19, 2008
Tuesday, June 17, 2008
Monday, June 16, 2008
We had another good day. Her feedings went up to 6 cc's and she handled them pretty well. I say pretty well because at tonight's 8:30 feeding, she started coughing (silently) a bit and spit some back out. The nurse practitioner said it could be because she was fed too fast or something else minor. If it happens a couple more times, they start to worry a little bit more and they'll have to see what's going on down there. So, that's another one of those things that we'll keep a eye on. Like I've said before, feedings can be one of the bigger obstacles that Kayley has to overcome. Every feeding that gets processed before the next is a step in the right direction.
Kayley is back in the spotlight today. Her bilirubin level went up to 8.9 from 6.7 yesterday warranting the light treatment. Again, this is not unexpected. With the light that they put her under, the level goes down pretty quickly. Also, by pooping (that is the medical term for it...I swear) she gets rid of the bilirubin more quickly. So, hopefully she can get back to being all cuddled up soon.
Another tube in Kayley's body was removed today. The IV she had in her hand is gone. The IV was put in the first day. It was to give her some calcium that one of the blood tests showed she was lacking. It wasn't used much after that but they kept it in because it was a good line. We're glad to see it gone because it was right on the top of her left hand. With the tape and gauze, it just looked uncomfortable. Now, Kayley has both hands to use to pull her other tubes out...which she only has 3 of now (ventilator, feeding tube, PCVC).
The fun update of the day is that Kayley had her bath at about 2:30 today. Luckily I'm only working mornings in the office so I could be at the hospital to partake in the activities (Megan is still being cautious due to her infection otherwise she'd be in helping too). It was a sponge bath so the nurse got the little towels ready for me and I wiped her down. We started at her head and went to her feet. I think I was able to get all the crusty stuff off. I was very hesitant at first to push very hard. I voiced my concerns to the nurse and she said to just go for it. So, we got her all clean. The nurse held her and I scrubbed. Now her hair looks blonder than ever. It looks so soft I just want to rub her head. We are now a step closer to holding her. The nurse practitioner said that if her blood gases are good tomorrow, she'll allow us both to hold her. We're hoping for good results!
While we were giving Kayley a bath, a nurse from NIDCAP (Newborn Individualized Developmental Care and Assessment Program) observed Kayley's behavior. The NIDCAP program basically helps us translate Kayley's actions and reactions into what she needs or wants. So basically, they are baby translators. Every baby is unique and special. So, every baby should receive individualized care. That's what NIDCAP is here to do...determine what kind of care is best for Kayley. This is yet another good program provided by Phoenix Children's Hospital. Anyway, the nurse said Kayley was very active and knew very well how to comfort herself. Humans use the hand to mouth approach to calm themselves down...eating, drinking, smoking, nail biting, etc. Kayley already knows this technique. When she becomes mad or agitated, her hands go right up to her mouth. So, if she ever forgets to do this, we will help her. When we contain her, we also try to put her hands up to her mouth. We should find out more of this kind of stuff because I think the NIDCAP nurse will write up a more descriptive report of all of her findings. It will be interesting to read what Kayley is trying to tell us besides "leave me alone" or "I'll kick you if you do that again."
Sunday, June 15, 2008
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.
Saturday, June 14, 2008
She's resting now after an afternoon with Drew (he makes everyone around him tired!). Hopefully that helps her kick the infection.
While Off The Ventilator, We Finally Heard Kayley Cry...Too Bad She Was Saying She Wanted Back On The Ventilator
I thought I'd just provide everyone with a look into what our new surroundings look like. We have been very impressed with the facility that we are in. Phoenix Children's Hospital runs the NICU at this hospital and everything about it has been remodeled. Just over a year ago, all the NICU babies were in one large room. I can't even imagine that chaos. Only 6 short weeks ago, just half the remodeling was done so babies were 2 to a room. Luckily, everything is complete now and all babies have their own room. The rooms are complete with all the medical setups needed. Kayley has not had to leave this room yet for any procedure. Everything is brought to her. Most surgeries would even be performed in this room. For anyone who stays here, the room features a couch that turns into a bed, a recliner, and a desk with phone and internet connection.
There are other great features of this facility and Phoenix Children's Hospital. This facility has a family room. It contains TVs, DVD players, computers, research materials, refrigerators, microwaves, etc. There are also showers and washers and dryers here...all for free. Great benefits for those who stay here multiple days. Phoenix Children's Hospital also has something called the Emily Center. It's a place that can provide us with any information that we request. For instance, once we heard Kayley has an IVH, we requested to have information about IVH's sent to us. We received a packet today with tons of articles on IVH's. It is very beneficial. We truly believe we are at the best place in Phoenix for high risk babies.