Monday, June 30, 2008

3 Weeks Old

It's unbelievable. Kayley is now 3 weeks old. I'll say it again. Time has flown by. I suppose it's because everything has been going so well. Hopefully the rest of the time will fly by also.

Kayley's CPAP settings went down again today. She is now on level 5 pressure. She started at 7, then went to 6, and is now at 5. Our nurse tonight said she's requiring a little bit more oxygen today because of the change but overall she's adjusting to it very well. Her oxygen is normally at 21% when she gets settled down and is nice and quiet. While I was there tonight, it was set to 25% so she didn't have to work too hard. It's a very minimal difference but will help Kayley adjust better. We are guessing that she will be off the CPAP sometime this week.

Tonight it was time for Kayley's weekly measurements. They record her weight, length, and head circumference to see if she's on schedule. Her weight came it at 1515 grams (3 lbs 5 oz) which is 30 grams more than last night. She gained an ounce. A very nice weight gain. This is right where she should be. Her length was 16 1/4 inches. At birth she was 15 1/2 inches. Last week she was 16 inches. Again, she fell right where she should be. And last, her head grew 1 cm. I didn't get the total circumference, but again, it was perfect. Right on schedule.

It's hard to believe she's grown that much these past 3 weeks but I guess we really don't notice it too much because we see her every day. One of the nurses came in last week and noticed how she is getting chubby cheeks...a Drew trademark. We'll have to start paying more attention.

Sunday, June 29, 2008

Nothing But Good Things

It's past 1 am here and I just got done holding Kayley. Megan was here during the day and met the doctor while he was doing rounds. I'm going to cheat and just paste in her update and then add a little of what I know at the end.

From Megan:

"The doctor doing rounds said he thought Kayley was doing great. He said her stats looked great. He also brought up her head ultrasound. He said the third one that they just did showed it resolving further and that made him think she may not have even had one in the first place. He explained that the first head ultrasound 3 days after birth is like looking through a foggy window and if they think they see a bleed, they make that call. He said it really doesn't matter because a preemie with no brain bleed and one that has a grade 1 or 2 that resolves is at the same risk for developmental problems anyway, but he did want us to know that she may not have even had one. He made it sound like the ultrasound that she will have right before she is discharged should be able to tell us if she ever had one.

He increased her feeds from 25 to 27 cc's. He said the goal now is to have her put on weight. He said some days she won't gain any and when she does gain it won't be the same amount each time, but they will watch her trend and he said he liked what he saw over the past week so that is good.

He didn't say when she would get off of CPAP, but it sounded like it would probably be this coming week.

As he was leaving, he said we should continue to pray to whoever it is we pray to because it is working. That made me feel really good."

The nurse weighed Kayley again tonight while I was here and her weight came up as 1485 grams (3 lbs 4 oz). That's 25 grams up from last night which is a great weight gain again.

The last update I have is that Kayley is really starting to use her lungs. As I was getting here tonight and walking down the hall, I heard a little cry coming from Kayley's room. Sure enough, Kayley was letting the nurse know how mad she was. She has made a lot of sounds before but never a true cry. Well, now she has. I have a feeling this may come back to haunt us months down the line...

Saturday, June 28, 2008

Getting Stronger And More Alert

Well, there was not much going on today for Kayley. There were no changes to her CPAP settings. Her feedings stayed at 25 cc's since that is still her full feed. She's still in the same room...113. Megan held her this afternoon and I held her this evening. She has just been doing great.

To me, she has seemed more alert. When you talk to her, she opens her eyes. She seems to be awake more often. When we're in changing her diaper or turning her, she seems to always have her eyes open and looking around. Her hands are trying to grab anything in the vicinity. Normally, that's either a finger or her CPAP mask. She is also sucking more and more. Every now and then, her fingers will find her mouth. She sucks away on them. She even likes the pacifier quite a bit. Hopefully, these last couple things help prevent any feeding issues in the future. When Kayley was sucking on her fingers tonight, I asked the nurse when they will try to feed her normally (not through the tube). She said that babies normally get the coordination to breathe, suck, swallow around 32 weeks. If they were to try it now, she'd be really clumsy at it. She'd either forget to breathe or not know what to do with the milk that was in her mouth. So the tube it is at least for another couple weeks.

Kayley seems to be getting a lot stronger with her breathing. Earlier in the week, I mentioned that she was pretty reliant on the CPAP. Once the nurses took it off to adjust it or to do anything else, her blood oxygen levels would start decreasing right away. Tonight after I got done holding her, the nurse took off the CPAP to adjust the mask. It turns out that Kayley had a red mark from where the mask was so it took a little longer than normal to put the mask back on. All the while, Kayley was doing great. With no assistance except a little oxygen blowing near her face, Kayley held and even increased her blood oxygen levels during the 15 or 20 minutes the CPAP was off. What a difference a couple days make. At first I didn't believe Kayley would be off the CPAP in "several days", but now it seems very believable.

The last update is that Kayley seems to be gaining a decent amount of weight. She weighed 1460 grams (3 lbs 3 oz) tonight. That's 50 grams up from last night. At this rate, we'll have a little chunker on our hands.
**We didn't take any pictures today so I through in one from the first couple days. It's unbelievable but I can see a lot of difference already.

Friday, June 27, 2008

Where The Heck Did Kayley Go?

Well, Kayley had another good day with some more changes. First of all, they lowered Kayley's settings on the CPAP. She is now down to level 6 for pressure. She was level 7. That's a good sign. She is handling the CPAP and breathing on her own very well.

Kayley's PCVC was taken out today. She had no need for it and she is doing very well with her feedings. So, as I posted last night, she is just down to the 1 tube..her feeding tube. All the rest of the things hooked up to her are just monitors. All of her sites that had a risk of infection are gone. With the PCVC out, Kayley can now have a tub bath instead of a sponge bath. We'll be able to get her really clean.

As expected, Kayley's feedings went up again today. When Megan was there, the nurse said to her that Kayley would be up to 24 cc's within the day. With Kayley's weight gain, her new full feed is 25 cc's. No need to worry that she isn't going to meet her full feed, the doctor told me tonight while I was there that Kayley was going up to 25 cc's at her midnight feeding. She is doing great.

Dr. Sprague made a point to come in to talk to me tonight (we're not around for the morning rounds like we used to be). He wanted to tell me how great he thinks Kayley is doing. He mentioned her being off the ventilator, her resolving brain bleed, and her full feedings to name a few of her highlights. It was great to hear. I asked how long she'd be on the CPAP. His answer was, "Several days." I really thought she'd be on the CPAP for a couple weeks. They must really think she's doing great. After the CPAP, Kayley will just have prongs in her nose (like adults would have) that give her oxygen.

Kayley was held twice today, once by her mom and once by me. She did great both times. She really likes being held. She stays so calm. Even when she's all comfy in her bed, she still moves a bit and knocks her CPAP mask off a lot.

And last but not least, Kayley was moved to a new room tonight. They did it between the time Megan left and the time I got there so you can imagine the surprise I got when I arrived. I walked into the NICU and got to our Kayley. Where the heck did they take her? I was confused. Then I looked down the hall and saw a nurse waving at me (I think they know our schedule so she was waiting for me to show up). I walked down to where she was and sure enough, Kayley was in a new room. We are now in room 113. It's the same set up except on the other side of the hallway. I was a little disappointed because I liked our first room, but I'll get over it. The nurse said they moved her so she was closer to some other babies. This way, the nurse who had Kayley and another baby didn't have to go quite so far to get from room to room. I'm pretty sure Kayley didn't mind either way.

Thursday, June 26, 2008

The Ventilator Has Left The Building...I Mean Room

Kayley has been doing so great off the ventilator that it has officially been removed from her room. What a good sign. She still relies quite a bit on the CPAP but that's no problem at all. When they take it off to readjust her head band, her oxygen stats drop pretty fast. Her settings are pretty much the same on the CPAP since when they first put her on it. The pressure is at 7 and her oxygen level fluctuates between 24% and 27%. 21% is room air. They consider her settings pretty low. When they start to ween her, they will adjust the pressure down. I'm sure that won't begin for a couple days.

One thing they need to keep doing with the CPAP is switch out the mask for prongs every now and then. The mask fits so tightly that it squishes her nose. She is so young yet that her nose and ears don't have a lot of firm cartilage to hold them in place. So applying constant pressure on her nose could cause it to form in a not so perfect way.

Kayley was taken off the TPN (total parenatal nutrition) today. This is the nutrition that is given to Kayley through her PCVC. They plan on taking the PCVC out in the next couple days. They are giving it a little bit of time to make sure Kayley does fine without the TPN. Until then, they are pushing fluid through the PCVC to keep it working. After they remove it, Kayley will be down to only one tube...her feeding tube.

Speaking of feeding tube, Kayley is now up to 22 cc's every 3 hours. She has been handling her feedings very well. I'm sure tomorrow she'll be up to 24 cc's...her full feed. Then, let the weight gaining begin.

Megan gave up her holding time with Kayley today so she could give her a bath. It was her turn. The picture above was taken at bath time with Kayley's mask off so you can see her face. It took a while for us to get use to all the tubes going everywhere, but now, it's a little weird to see her without all of them. I could get use to it pretty easy though.

During my time at the hospital tonight, I held Kayley. They are a little less worried about transporting her from the bed to the parent when she is off the ventilator. If the ventilator tube falls out, they have to re-intubate her which is bad. If the mask falls off, it's no problem. They just strap it back on. It use to take two nurses to give Kayley to us. Now it only takes one and she even asked me if I wanted to pick her up myself. I just wasn't quite ready for that yet. Anyway, this is the first time holding her since she's been off the ventilator. She grunts and squeeks quite a bit. I also heard many sneezes which I am attributing to the air going into her nose. And when I moved a little bit and made her mad, she even gave me a couple short cries. I didn't want her to be mad but it was nice to hear that little voice of hers.

Wednesday, June 25, 2008

Look Mom! No Ventilator!

At the time of this post, Kayley has been off the ventilator for over 12 hours. She is continuing to breathe on her own with a some help from the CPAP (continuous positive airway pressure). This new machine keeps pressure in her lungs to help keep her air sacs inflated so she doesn't have to work so hard. It varies between patients, but she will probably be on this machine for the next couple weeks. The step after that is to just have the nasal prongs to give her some oxygen. We're trying not to look too far ahead though. We're just relishing in the fact that she's doing so well now being off the ventilator.

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

4 Hours And Going Strong

Kayley has been off the ventilator now for 4 hours. Everything looks great so far. Even though she's off the ventilator, they haven't taken it out of the room...the nurse said she has a reputation.

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.

Kayley! Nice Little Girls Aren't Supposed To Do That

Well. I'm victim number two. Kayley pooped on me. I must say, it was perfect timing on her part. Right as I lifted her legs a bit to slide a new diaper underneath, she let it go. I was hit. The bedding was hit. Even the plastic surroundings of the isolette got some. I guess it's our fault for wanting her to poop so bad. She really showed us.

Other than that, Kayley had another good day. Megan and I are both working now so it's a little harder. I worked a full day and Megan worked most of the day too. She's saving that time off for when Kayley gets to go home. So, we don't know a whole bunch but I also don't think a lot went on today in the NICU. That's always a good thing.

Kayley's feedings went up to 19 cc's. She's handling them like a champ. She is also receiving oral caffeine (not Red Bull, I asked) instead of the IV caffeine. I asked why they are changing it and the nurse said it's to get her use to it. Right now, Kayley receives lipids, TPN (total parenteral nutrition), and caffeine through the IV. Once they determine that Kayley is having no trouble with the fortified breast milk, she will not need the lipids and TPN any longer. That leaves the caffeine and they don't leave an IV in just for that since she can have it orally. So hopefully, the IV (also known as the PCVC) will be out soon. One more tube gone.

Kayley's weight went up again tonight. It is now 1370 grams ( still 3 lbs). She was 1360 grams last night. I asked the nurse what they want to see for weight gains each day. She said they like to see an average of 1 oz (30 grams) per day. If Kayley really starts packing on the weight, they start to watch her more closely. It could mean that she has swelling somewhere and is retaining fluid. They don't want that. And, the extra weight makes her lungs work harder. At this point, we don't want them to work any harder than they have to. So, 1 ounce is a good weight to gain per day. Doing the math, if Kayley stays in until she is 37 weeks gestation (not saying we are shooting for 37 could very well be longer) and does gain that 1 ounce a day, we will take her home at just over 6 lbs.

The last update of the day is actually what we have planned for tomorrow. They are going to try to extubate Kayley again. We're hoping the extra week and a half on the ventilator gave Kayley the needed maturity and growth to pull it off this time. It would be really nice to have that tube out of her mouth and lungs. I'm sure we'll have updates tomorrow night if not during the day. This big of a step may warrant an extra mid-day posting. We'll see. Anyway, keep Kayley in your thoughts tomorrow as we try to reach this huge milestone.

Monday, June 23, 2008

New Purple Hat For Her 2 Week Birthday

One more week down. Kayley is now 2 weeks old. In the NICU, they refer to her in her gestational age still..29 weeks. Any way you think about it, Kayley has come a long way in such a short time. However, we still have a long way to go.

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.

The doctors also decided to increase the nutrients that they put in the breast milk for Kayley. She handled the first dosage so well, they're giving her more. This also means that her feedings are staying at 17 cc's until they determine that she's handling the added nutrition. We also got confirmation today that 24 cc's is considered Kayley's full feeding.

As I said in my previous post, Megan and Marla took the day shift with Kayley again today. They went in the morning and stayed until about 4:30 pm. Megan held Kayley again and this time she had the nurses recline her a bit to take the weight and tension off her arms. It helps a lot to have Kayley just laying on you and you only have to use your hands to keep her contained. Even a 3 lb girl can get heavy after hours of holding. When Megan was done, Drew and I met her and Marla for some pizza. After eating, we exchanged duties. I headed to the hospital and Drew went home with his mom.

When I got to the hospital, the nurse and I planned Kayley's bath. Kayley gets a bath every three days now. Since Megan did the last one, I got to do this one. The bath was another sponge bath. We start with face cleanup, move down to the arms, chest, and back, then down to the butt and legs, and finally finish by washing her hair. It's a pretty long process that really takes two people. One to move and hold Kayley and the other to clean her. I was the cleaner. Kayley normally gets pretty mad during these kinds of activities so they normally don't like to have anyone hold her afterward because they want her to settle down and rest. So I thought I was out a hold tonight. However, Kayley handled the bath very well and didn't get too worked up which meant that I could hold her after if I wanted to. I'm sure you all know my answer to that.

Before I held Kayley, we weighed her and measured her length. To our surprise, Kayley came in at a whopping 1360 grams. We weighed her twice to make sure it was accurate. Last night she was 1260 grams. At birth she was 1355 grams. So, a major jump in weight. Looks like our holding is paying off. When we measured her length, she was 16 inches long. Kayley was 15.5 inches at birth. So, even though it doesn't look like it, she is growing like a weed!

While they were moving Kayley from the bed to my chest, I noticed something missing. The IV in her foot was gone. They took it out today. The nurse said they really had no use for it and with it just being there unused, it could have issues. So, out it came. I'm glad because it really did look very uncomfortable.

Last, as you can see in the picture above, Kayley was given a new knitted purple hat. It looks great on her. We've been given so many things from the nurses. Volunteers knit some things or just donate items and bring them to the NICU. Then when the nurses need something, they go to the donated stuff and pick something out. So far they've given Kayley a couple blankets, this hat, and some beenie babies. More great things to keep Kayley's room and bed looking more like home.

Sunday, June 22, 2008

I Would Rather Get Spit Up On....

Yesterday, Megan and Marla went down to the hospital during the day while I took Drew duties. Then we switched our duties late in the afternoon. Megan and Marla came home and I headed to the hospital. It worked out so well that we're planning the same thing for today...except we're adding some Oregano's pizza during the transition.

Everything has pretty much held steady for Kayley the last couple days. The only changes that came were to her ventilator settings and her feedings. Dr. Lepp lowered Kayley's breaths per minute back down to 10 because her blood gas test came back so good. It's really not that much of a change for Kayley since she breathes right over the ventilator anyway. But, it is a change in the right direction.

Kayley's feedings have gone steadily up to 17 cc's. Our nurse and nurse practitioner said this is her full feeding even though Dr. Lepp said it was 24 cc's the other day. I'm sure we'll get that straightened out to figure out if they will increase them any in the days to come. Again, it's calculated based on her weight and maybe they are using different numbers.

Kayley's weight ballooned yesterday to 1330 grams, however, it was due to the blood transfusion. When the weight displayed on the screen, I about jumped for joy. Again, the nurse qualified it by telling me she just received some blood and that's why it went up so much. It's sure to go down at the next weigh in. And sure enough, at last night's weigh in, it went down to 1260 grams. Technically, that is still an increase if we go by the time before Kayley received the transfusion. So, we'll take it.

Kayley got me 2 nights ago by spitting up on me. Although not too gross, it was still a surprise. Well, Kayley really got Megan yesterday. While Megan was changing her diaper, guess what? Yep, Kayley pooped on her. I can only wonder what is in store for me today.

Last night, the nurse and I were talking about Kayley's next extubation and the outcomes. If Kayley makes it, great. However, if Kayley still can't handle it on her own, it's still nothing to worry about. She probably just has to gain some more weight and get a little more mature. She also said that if she does fail, they will probably shoot for a specific weight to try her at next time rather than shooting for a certain day. So, let's hope Kayley stacks the weight on just in case. We are very hopeful that she'll make it this time though.

Kayley was held 2 times again yesterday. Megan during the day and me at night. Kayley really seems to benefit from it. The nurse mentioned that it really helps the babies gain weight. The skin-to-skin gives them our body heat to help them keep warm. This in turn allows them to save the calories they would be using to keep warm themselves to gain weight instead. So, we're glad we can help her out so much. Kayley doesn't really know this yet but she's also helping Megan and I tremendously too. Holding her is so beneficial to us. We love it.

Kayley had 2 episodes yesterday where she was really mad. Both times, it was after she was put back in her bed after Megan and I held her. Her heart rate spiked to over 200 beats per minutes. It scared Megan and I a bit but the nurses just shake it off. As long as it's being raised for a reason (she's mad), they don't see it as bad. If she were just sitting there and it happened, that's an issue. In any case, she gets over her fit and calms down pretty well...which is also a good sign.

As I was talking to the nurse last night, she told me that it's good and soothing for Kayley to have us put some good things in her mouth (sugar water, breast milk, pacifier, etc.). This way, Kayley won't associate everything going into her mouth as bad (feeding tube, suction tube, ventilator tube). In the end, she will handle being introduced to the bottle and oral feedings better and won't think we're trying to do something she doesn't like. That makes sense to me.

Another Late Night = Late Post

Kayley and I set a new record again tonight. I will post when I get up in the morning (afternoon).

Saturday, June 21, 2008

Training For A Milestone

The doctors are preparing Kayley for her next extubation attempt on Tuesday. Kayley is getting lots of rest. The rest helps her develop and grow. Kayley is also receiving regular doses of caffeine. If you remember, this drug helps her stimulate the part of her brain that tells her to breathe. And last, Kayley received her first blood transfusion yesterday. She received 18 cc's of blood. Getting the blood was the easy part. Setting up the IV...not so much fun. She had to be stuck 4 times in order to finally get a successful IV. Poor Kayley. It looks like she has Megan's veins. The IV is located in her right foot. It just looks painful. But, besides all the poking, she doesn't seem to mind. Needless to say, they're going to leave this one in for a while so they don't have to put her through that again.

The nurses are now fortifying Megan's breast milk so Kayley receives the necessary calories, protein, calcium and other things that breast milk lacks and that preemies need. This is a normal procedure in the NICU. During this time, they will keep Kayley at 13 cc's until they know she can handle the new concoction. Once she proves she can handle it, it's back to increasing the amount she receives. Megan found out yesterday that 24 cc's is a full feed for her. 30 cc's is equal to 1 ounce.

In the afternoon, Megan got to hold Kayley for the second time. Both of them really seem to enjoy it. Again, since moving Kayley out of bed is such a process with all her tubes and wires, the nurses require at least a one hour holding. That was no problem even for Megan with her small bladder. She held Kayley for about an hour and a half. We also needed to cut it a little short so we could get home so I could take Drew swimming. Of course, once Kayley was put back in her bed, Megan headed straight to the bathroom.

So, we went home, I took Drew swimming, we ate dinner, and then we put Drew to bed. Then it was back to the hospital for me. I like to be there at night to meet the night nurse (we're still interviewing) and to take part in Kayley's feedings and holding study. While changing Kayley, the nurse asked me if I wanted to hold Kayley. I said, "I would but Megan already held her this afternoon and we were told that she can only be held once a day." The nurse (who seemed to be a little old school) scoffed at that and said that was probably for the first couple days so they could make sure Kayley could handle it. And, since she was doing great and seemed to enjoy being held, she doesn't see why Kayley can't be held multiple times a day. So there I was, changing into my button-down-Kayley-holding shirt. I started at 10pm as Kayley was finishing up the 2nd half of her feeding. Next thing I knew, it was 11 pm. The nurse would come in and check every so often to see how we were doing. So far so good. We were both very comfortable. I was lying back perfectly in the recliner while Kayley was on my chest. Then, midnight approached (2 hours) and I could hear the nurse outside saying to another nurse that she was going to start Kayley's next feeding and then go to lunch. So, the nurse came in and asked if I was all right to hold her for another hour. I was still plenty comfortable and Kayley was asleep and her stats were great so I said yes. Kayley's feeding began and we were off, going for a total of 3 hours. This last hour was a little bit hard on me though. Not because I got antsy, but because of what happened. About 15 minutes into the 3rd hour, Kayley's ventilator started beeping, popping, and crackling like it does when it's disconnected. If there was a monitor on my heart, it would have shown that it stopped. I checked all the connections. They were all fine. Kayley's breathing stats stayed the same. What the heck? Then another nurse covering for our nurse who was at lunch came in. I explained what happened and she went to get the repiratory therapist. Turns out, there was just some water in Kayley's line. A common occurance that doesn't affect Kayley's breathing...only my sanity.

So there we are, two and a half hours into it. Kayley was being fed and I was calmed down from the ventilator episode. Then, Kayley started to get a little squirmy. I looked down at her and heard, "Burp!" Next thing I new, spit up was running down my chest between Kayley and myself. Not a big deal. Our nurse was supposed to be back in 10 minutes. So, we just laid there...until, Kayley's monitor said "unable to analyze heart monitor." Oh man. I was having my second heart attack in the last hour. Then I realized that her monitor got wet from the spit up and was just having a tough time sticking to Kayley. Another crisis avoided. Kayley was fine the whole time...I was the one with a couple years taken off my life. Within the next couple minutes, our nurse and repiratory therapist were in putting Kayley back in her bed. They swaddled Kayley up good and tight and she was out. More rest for her upcoming breathing test....

Late Post

For all of you that get up and read this every morning, today's post will be a little late. It's 2 am Phoenix time and I just got home from the hospital. Kayley and I had some extra long bonding time. I'll update the blog as soon as I get up in the morning.

Friday, June 20, 2008

Why Such A Big Diaper For Such A Little Girl?!?!?

I'm sure this will embarrass Kayley when she reads this years down the road but that's what Dad's do right? Looks like we don't have to worry about Kayley processing her feedings. The nurse had to change her bedding twice last night because Kayley pooped through her diaper the first time and pee'd through it the second time. Finally, the nurse upped the diaper size. The ones before were too big for her so these new ones are way too big. However, they hold more. That's key. Atta girl Kayley...keep it up.

There wasn't much of an update this morning from the doctor. The plan for the day was just another day of rest. Kayley is good at that by now...except when the nurse and Mom come in and wake her up with a bath. Yep. Kayley got her second bath today this time from Megan. And from what Megan says, Kayley was none too happy about being woken up for it. She was happy when they were done and she was able to be put in her first outfit. All the nurses today loved it and said it fits Kayley (the wild child) perfectly. See the pictures above. The outfit is courtesy of Brooke and Aaron. Thanks! It's perfect because it's NICUwear. It allows all the wires from the monitors to run out the opening in the front. Some people are so smart to come up with these things.

Part of the nurses routine with Kayley is to suction her lungs out. The ventilator tube that Kayley has causes there to be a lot of secretions in her lungs. So every now and then, Kayley's oxygen levels will drop a little bit and her heart rate will start to go up. When they feel her chest or listen to her, she feels or sounds coarse. These are signals that it's time to suction. The suction tube is part of Kayley's ventilator tube. The ventilator tube comes out of her mouth and splits in 2 (kind of a Y). One path goes to the ventilator and the other path goes to suction. When they suction her, they slide a smaller suction tube down the tube in her throat and then activate the suction. This grabs whatever is in her lungs. It's pretty amazing how much stuff is in there. They normally do about 3 to 4 passes to get it all. The tubes have measurements on them so they know when to stop pushing the suction tube in. Going too far into the lungs could damage them. Anyway, this morning, the nurse couldn't seem to get it all. No matter how many times she tried, Kayley still sounded coarse. So, they went to a bigger suction tube and got it. I guess it was just too thick to get through the smaller tube. Hopefully Kayley will be off the ventilator soon so she doesn't have to keep going through this.

As you can see from the pictures above, big brother Drew came to see Kayley again. This was his second time. He saw her the day she was born. We don't bring him too often because he really doesn't understand the situation or that he has a sister yet. He would rather get down and play with all the interesting machines in the room. He can, however, say Kayley...pronounced "Kkkk LEY" with emphasis on the "ley". Grandma taught him in the car on the way down here one day. In any case, Drew seemed to like seeing Kayley and was a little curious. Little does he know that this little girl in the isolette is going to come home in a couple months and steal his room, his furniture, and a lot of the attention he currently gets.

Thursday, June 19, 2008

YES! I Want To Hold Her!

Everybody say it with me this was another great day. We know that the future may still hold some rough days, but we'll keep taking the great ones as long as they come.

The morning started out with Megan getting an update from Dr. Lepp (a University of Iowa grad). It was more good news about the IVH. He said he probably wouldn't even call it a grade 2 anymore. We like to hear those things. He did, however, bring us down to reality a bit by reemphasizing that Kayley is still at risk for neurological disorders since she was born so early. We already knew that but it seems they like to keep the parents informed.

Dr. Lepp also discussed the plan for extubating (removing the ventilator) Kayley again. It sounds like they will shoot for this coming Tuesday. They really want to give her time to grow and allow the inflammation in her vocal chords to subside. He also said that he was going to be with Kayley this next time so if she would happen to fail again, he can help determine why.

The last update that Dr. Lepp had was that he's pretty sure Kayley's Patent Ductus Arteriosus (PDA) has closed. If you remember back, a PDA is the open path between the heart and lungs in babies when they are inside so the mother can breathe for them. These normally close on their own after birth but are susceptible to remain open in premature babies. Kayley shows no signs of it being open.

After visiting with Dr. Lepp, Megan got busy setting up our primary nurses. Primary nurses can be requested by parents to always care for their baby when they are on duty. It's a very good idea to have primary nurses. They will get to know Kayley and her needs. They will treat Kayley by normal protocol but they also will know if something Kayley is doing is not her normal behavior which can signify a problem. Other nurses who haven't had Kayley before may miss these signs because they don't know her habits. So, last night we made a list of our favorite nurses and Megan worked this morning to get them as our primary nurses. So far, we got our top 2 day shift nurses and 1 of our top 3 night shift nurses. Some of the other ones are already primary nurses for other babies or have other duties to attend to (being on the trauma team, etc.). We are very happy so far but we will continue to "interview" other nurses so they can be on our list. Most of these nurses work three 12 hour shifts so they will only be Kayley's primary nurse 3 days a week. That's why we will have multiple primaries for Kayley.

Megan was also approached this morning about having Kayley be part of a study. Normally I would think "No, this is our little girl you're talking about. Just do what has already been proven," but this is actually a good study. The study is to find out if holding the baby during feeding helps with weight gain. So, since Kayley can only be held once during the day, she will for sure be fed at that time. The rest of the times, Kayley will be held or cradled in her isolette. They allow for one feeding time per day to do whatever we want...either hold her or don't hold her. The study actually started with Kayley today. At her 5:30 pm feeding, I stuck my hands through the side of Kayley's isolette and cupped my hands under her to hold her. She just needs to have the feeling of being held. So, it's not a study to be scared of. It actually helps because we get to interact with Kayley more (the nurses do it when we're not there). Hopefully she gains a bunch of weight and the study is successful.

Holding Kayley during her 5:30 pm feeding wasn't my first time holding Kayley. Since Megan was able to hold Kayley yesterday, it was my turn today. I knew right when I woke up this morning that I was going to get to hold her so I was excited all day. I got to the hospital around 2 pm. The nurses came in at 2:15 pm and asked if I wanted to hold Kayley. I don't know if they saw the look on my face as I answered but I'm pretty sure it said something like "Are you kidding me? YES I want to hold her!" And as Megan said yesterday, it's great. It's more than I ever expected. She is so little. In her isolette, she looks like she's a good size. But, when the nurses laid her on my bare chest, I could not believe how little she really is. They mention how good it is for the baby and the parents. I believe it 100% now. Right after we got comfortable, Kayley's oxygen levels increased just as they did when Megan was holding her. Kayley can actually tell when she is skin-to-skin with us and she loves it. How great is that? And to top it off, it makes us feel amazing to see the difference we are making for Kayley during holding time. A lot of the time we've spent at the hospital thus far has just been spent observing and helping with some small roles in caring for Kayley. As good as the nurses are at including us, there are still times when we feel kind of helpless like "my daughter is right there and I can't do anything for her." Well now we can hold her.

Tuesday, June 17, 2008

Our Strong Little Girl

The day started off with Kayley getting back off the bilirubin lights. It was a short 24 hour stint. Her pooping and the lights did the job. Let's hope she can manage to stay off them for a little longer this time.

The next news we received is that Megan was discharged today. She finally got to go home. She left the hospital around 5 pm. It's the first time she has been out for over 20 days. The bad part about it is that while she was in the hospital, the weather was pretty mild. Not today. The reading on the car temp was 114 degrees when I came down here around 1:30 pm. So, she gets to experience a bit of a heat wave. Welcome to the outside world!

Megan and I attended our first class today called First Steps. It's for parents who are just beginning the journey with their baby in the NICU. It's about what to expect and what is good for your baby. It was good to sit down and hear all that stuff but I feel like we already knew most of it because the nurses are so open here. Still, I'm sure well be one of the first ones to sign up for the next class on the agenda called Getting Close. That one is still a little ways off. I'm sure it'll come quicker than we think though. Time has been going pretty fast in my opinion.

After the class, guess who got to hold Kayley for the first time? That's right. It was.....Megan! I changed her diaper and bathed her first. I guess fair is fair. Megan said it was great. We took a lot of photos. Again, they really like the kangaroo hold around here. It's where the parent and the baby are skin-to-skin. Kayley really seemed to benefit from it. The nurses said her oxygen levels increased tremendously and she was able to hold it up there for some time. Megan held Kayley for around an hour and a half. With the amount of effort it takes to get Kayley out of the isolette, they really want us to hold her at least an hour if not more. 2 to 3 hours is great. It takes a big bladder and a full stomach. I'm a little jealous, I'll admit it. But I've already called next.

Megan's Mom took Megan home shortly after she was done holding Kayley. It was pretty hard for her to leave Kayley as you can imagine but she also seemed a little excited to get home. Like it helped me to have Megan here the first night I left, it helped Megan knowing that I was sticking around for awhile tonight. We like to meet the night nurse and help out during Kayley's 8:30 pm feeding and interaction.

We learn something new in the hospital every day it seems. Tonight, our nurses and the respiratory therapist noticed that Kayley's tape to keep her ventilator tube in was very loose. The funny thing was that they just retaped her this morning. Come to find out from the respiratory nurse, they are using a trial tape in the NICU. The old tape worked great but it contains some latex. Evidently they are shying away from products that have latex in them so babies don't develop an allergy towards the latex. The new tape doesn't contain latex but so far, it seems like the tape trial isn't doing so well. The repiratory nurse said it hasn't been real great so far. Of course while they were retaping, Kayley showed them her fiesty-ness. She grabbed the tube multiple times. They said she was too strong for the new tape so they re-inforced it with some regular tape. Someday she just might decide on her own that she needs the tube out. Lets hope she has a little more patience than that because normally the doctors like to make those decisions.

As you already know, I normally save some good news for last. Well, tonight is not an exception. While I was waiting for the night nurse to come in and do her nightly checks with Kayley, Dr. Carballo (our admitting doctor) came in to discuss Kayley's head ultrasound results from today. The bleed improved and went down! That's the best news we could have expected. I was overjoyed when I heard her tell me that. What a relief. We don't talk about it too much but I know it was weighing on all our minds this week. They will have another ultrasound next week to look at the progress again. If it continues to go down, they will quit the ultrasounds and we most likely won't discuss it ever again except when we're remembering back to this time. What a strong little girl we have...

Monday, June 16, 2008

Got Poop?

Washing Kayley's head.

Needing 2 hands to wash Kayley's head.

Washing Kayley's belly.
Kayley's clean blonde hair.
Another shot of Kayley's blonde hair.
Got poop? Kayley's nurse did in the middle of the night last night when she changed Kayley's diaper. She said it was a big one too. That's great news as far as her intestines go. It means they work. It doesn't mean we're out of the woods yet as far as the whole process goes but it's a good sign. And just to show off a bit, Kayley pooped 2 more times today. That's our girl!

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

Celebrating One Week Old, Beautiful Eyes, And A Precious First Kiss

By the time most of you read this, Kayley will be one week old...a week that has flown by with more medical jargon than we've ever heard. I can truly say that I've never really cared what a PCVC, IVH, ART line, OG feed, or CPAP machine was. Now they are very important parts of our daily life. They have abruptly made their way into our everyday speaking. Oh how our lives have changed this week.

Kayley had another great day (I really love putting that sentence into these posts.) Nothing very significant changed but we made a lot of little steps in the right direction. Kayley is starting to gain the weight back that she lost in the first week. As you know, she was born 3 lbs. On Friday, she bottomed out at 2 lbs 9 oz. It's very normal for newborns to lose weight the first week. Since Kayley has been getting fed, her weight has gone up to 2 lbs 10 oz last night (Saturday) and 2 lbs 11 oz tonight. Now, if she'd just poop...

The doctors have been increasing her feedings regularly, because so far she has handled them great. We are now up to 5 cc's every 3 hours. Their plan is to continue increasing the amount every 12 hours. So, if Kayley keeps up the good work, the next time the amount will go up to 6 cc's. They will continue on that road until we reach her maximum amount. We don't know what that is, but we do know it's based on her weight. This is very good progress, but we have been warned repeatedly that sometimes out of the blue, Kayley will temporarily stop processing the feedings. Hopefully this doesn't happen, but at least we're prepared. In that case, they will suspend the feedings for a while to let Kayley catch up.

This morning, Kayley had another test for her bilirubin level. It went up from 5.2 to 6.7. They kind of expect this to happen. 6.7 is not high enough to put her back under the lights, but I'm sure that will happen soon enough.

Kayley also had the last of the 2 lines in her belly button removed today. It's the line that goes straight into an artery. The purpose of it is to monitor blood pressure constantly and to allow the nurses to draw blood directly from it. There are a few reasons they took it out. First, it can only last 7-10 days. Today is day number 7. Second, it's gives Kayley a higher risk of infection because it's an open line to her heart. And last, Kayley really had no use for it any longer. Her blood pressure is very stable and even though she seems to get blood drawn a lot, she really doesn't according to the nurses. Kayley probably has blood draw 2 to 4 times a day. A lot of babies in here have it drawn as much as hourly. So, the line is out. Now Kayley will have to be pricked in the heel every time she needs to have a blood test done. It's worth it to have it's risk of infection gone. Plus, she can now be swaddled better without the nurses worrying about that line getting in the way.

Now, onto my favorite updates of the day. I took this afternoon off from the hospital to spend some time with Drew. We played around the house and went swimming. Tonight when I returned to the hospital Megan and the nurses were in with Kayley smiling and talking to her. Kayley was wide awake with her eyes more open then we've seen yet and responding very well to voices. So as you can see above, we took a lot of pictures of her beautiful eyes.

And last, I received the greatest Father's Day gift from Kayley. The nurse allowed me to give Kayley a kiss. It was outstanding! Again, picture above. This is just the beginning of the bonding we will have with Kayley. She is due for her first bath in the next couple of days. After that, we will be free to hold her once a day. They really push the kangaroo hold here. It's where mom or dad puts the baby on their bare chest to have skin to skin contact with them. Studies show it does wonders for the parents and the child. We can't wait.

I Think Megan's Moving In

Megan is going to stay yet another day. This will make it 19 straight days in the hospital. Her infection is progressing (I'll save the not so pretty details for myself) and the doctor doesn't feel like they've gotten on top of it yet. She will have another IV put in to receive stronger antibiotics. She's excited about that. We're taking bets on how many sticks and different nurses it will take to get the IV in. The over-under for sticks is 3 (she had 4 last time) and for nurses it's 2 (she had 3 last time). I'm taking the overs.

Give The Girl Some Food

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.

Saturday, June 14, 2008

Megan Update

Well, Megan is still in the hospital and will be here at least until tomorrow. They are trying to get the infection under control around her incision. It was nice to have the doctors keep her here these extra couple days so she can be here with Kayley, but I think she's really ready to get over the infection. It's not comfortable for her and she's now feeling a little sick from it. She's been in the hospital for 17 days now. Tomorrow will be 18.

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

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 a bright light on 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.

Kayley's Suite

Our room from the hallway.

Kayley's bed and all the hookups. The famous monitor that we all watch closely is above her bed.

My bed and desk for now. I'm sure Megan will benefit from these when her stomach feels better.

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.