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."

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.

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 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.

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.