Big Day For A Big Girl

Kayley had a great day today on her 1 month birthday. She became a big girl in a couple different ways.

First, Kayley was moved to a "big girl" bed today. That's actually what the nurses call it. It means that there is no more isolette. Her new bed is the same type of bed that newborns are first put in in the hospital. Drew was in one the entire time he was in the hospital after he was born. What this means is that Kayley no longer needs assistance at all in maintaining her temperature. It also means that they don't have to continually monitor her temperature. Also, since the isolette used to weigh Kayley, she now gets weighed on a "big girl" scale. So, along with the new bed comes a lot of changes...big girl changes.

As I said above, Kayley now gets weighed on the big girl scale. Tonight she was up 35 grams to 1830 grams (4 lbs 1 oz). Talk about a big girl. She is now up 1 lb 1 oz from her birth weight. It's a great accomplishment but there is still more to gain.

The last update of the day is a biggie. The Arizona Pediatric Eye Specialists came in today to give Kayley an eye exam. They check for something called Retinopathy of Prematurity (ROP). It's when blood vessels in the immature part of the retina develop abnormally causing some complications in the eyes. This could be anything from nearsightedness to a wandering eye to blindness. Since a full term baby's eyes are just done developing when they are born, premature babies' eyes are not mature and are at a high risk for ROP. Well, we received great news. Kayley's eyes are already mature! The actual sheet that we received states, "Your infant's eyes have mature blood vessels and are at a low risk for developing ROP." Then it says, "She should have another eye exam by an ophthalmologist in six months." However, the "six months" is crossed out and written in is "24 months"! What great news. They do not seem worried at all about her eyes at this point. When Megan was there, the nurse told her how great this was and how she really couldn't believe the results because Kayley's eyes are not supposed to be mature at her age. Kayley just doesn't stop amazing us. What a great 1 month birthday...

Happy 1 Month Birthday Kayley

Tomorrow is Kayley's 1 month birthday. What a month it's been. Luckily our ride has featured mostly smooth terrain. Hopefully it continues that way.

The day started out with the doctors lowering Kayley's flow from .5 to .4 lpm. She has been doing great on .5 so naturally, they lowered her to .4. She spent most of the day there, however, when I got in tonight the nurse told me they had to put her back to .5 lpm. She just wasn't ready. Her oxidation stayed in the 70's when it is supposed to be between 83 to 93. Well, I guess we'll try another day.

Megan received the results of Kayley's recent PKU (Phenylketonuria) test when she got in today. Her level is normal! That's great news. PKU is a genetic condition in which the body can’t process phenylalanine (Phe), an amino acid found in many foods. Too much Phe is toxic to the brain. It can be controlled by diet but would be a lifelong pain in the you know what. Anyway, another dodged bullet.

Kayley has been so stable lately that her status is rising. She is no longer considered a NICU baby. She is now in Special Care. There's no change to location but there are changes to Kayley's routine. Mainly, the nurse that has Kayley will now have 2 other babies instead of just one. Also, Kayley's vitals no longer have to be recorded hourly. They will now be recorded every 3 hours. Basically, they don't have to watch her as closely as they have been. It's a very good sign because they have a lot of confidence in her.

Kayley did her job again this last 24 hours by putting on a good deal of weight. She is now up to 1795 grams, up 45 grams from last night. That equals 3 lbs 15 oz. 4 lbs is just right around the corner. That will be a great milestone for her. Tonight, I also asked the nurse what Sunday night's measurements (her weekly measurements) came out to. She showed me the chart and Kayley is right on schedule with her head circumference and weight. Her length came in a little above average. She is now 17" long. Kayley is becoming our big little girl.

Another thing to note is that Kayley's little nose looks to be getting sore. As I said last night, the new prongs do not give her humidified air so they tend to dry her nose out. Tonight, the nurse suctioned Kayley's nose because it sounded stuffed again. The good news is that she got some nice chunks out. The bad news is that she got some blood too. It's nothing to worry about because between the prongs sticking up there and the dry air, it's very normal. However...poor little girl!

Special Holder...

Kayley had a special new holder today. Grandma Marla stopped in for Kayley's 6 pm feeding to hold her for her first time. Marla was excited all day and when the time came...maybe a little nervous. No one can blame her though. Megan and I were very nervous for our first times too. It took a while but now we're pretty comfortable. It will only be a short time until Marla feels that way too as there is still a lot of holding to be done.

Kayley had a change today with her feedings. They are now up to 33 cc's. This big jump just shows how well she is doing. The doctors feel so comfortable with how she's handling them that they increased them by 4 cc's. I can remember just a short time ago when her whole feeding was only 4 cc's. Kayley has come a long way.

Kayley weighed in at 1750 grams...up 10 grams from yesterday. It's not a real big gain but it's still a gain. With the past couple weight gains she's had, it was bound to slow down a bit at some point. No problem though. I'm sure she's packing it on with the new dosage she's receiving. Both nurses today who are 2 of Kayley's primary nurses commented on how huge she has gotten since the last time they saw her. Neither of them had seen her for 4 or 5 days. Megan and I don't see a lot of difference since we see her every day so it's nice to hear that from those that can really tell.

Kayley is still doing great with her new prongs. The whole time I was there tonight, she kept her oxidation level very high. It looks like she is getting used to them. Even though it's great that she's on the lower flow prongs, there is a small side effect. With such a low flow, they no longer humidify the air that Kayley is receiving. Evidently it doesn't help with the flow as low as it is. So, if you can imagine, Kayley is receiving dry air in her nose. The side effect is that the inside of her nose can get dry and crusty. I definitely noticed it tonight when I was holding Kayley. Her nose seemed stuffed up. To combat this, the nurses put saline in her nose to help moisten it. And, when there's enough gunk in it, they will suction it out. They don't want to suction it too much because it could irritate it.

The last update of the day is that with the nurse's help tonight, we got a new recliner for Kayley's room. The one we had in our new room was broken and didn't lean back all the way so when we put our feet up, it felt like we were sliding out of the chair. It was very uncomfortable. So tonight I asked our nurse if she could help me steal one out of another room. She complied and we now have a comfy new chair...perfect for those marathon holdings.

4 Weeks Old

One more week down. Kayley is 4 weeks old. We see a lot of differences in her since the day she was brought in. Mainly, her breathing and her size. She's gone from the ventilator to the CPAP to the nasal prongs. And today, the doctors even had the nasal prongs upgraded to a smaller size that provides less flow. Her flow was 1.0 lpm but is now down to .5 lpm. I asked the nurse tonight and she said they ween her off the prongs slowly. They will take it step by step going down .1 lpm per change. She's doing great so far on her new prongs.

It's hard for us to notice the size changes in Kayley since we see her everyday. However, Megan noticed that there are changes in how the same size clothes are now fitting. Her hats are getting tighter along with the outfit itself. She's still very small but it's nice to see the changes. Tonight she weighed in at 1740 grams, up 20 grams. It's still 3lbs 13oz but she's gaining. She's doing a great job with her feedings.

We now seem to have 3 main goals. The first is to ween her off the oxygen. Like I said, that could take some time. The second is to get her feedings closer to how they would normally be. This includes having her feed using the bottle or breast. This will be a major accomplishment for Kayley. And the last one is to get her out of the isolette and into a big girl bed. So far she's doing great regulating her own temperature in the isolette. This last goal may not be too far away.

3lbs 13oz!

Kayley didn't have a lot of changes again yesterday. It was more of the feed and grow approach. And grow she did. Yesterday she went up to 1720 grams from 1685 grams. That is up 35 grams and her total weight in pounds is now 3lbs 13oz.

One small change that Kayley had yesterday was that they decreased her feeding time from 1 hour to 45 minutes. The 29 cc's were loaded into a pump and fed to her over a 1 hour period of time. Now, that time is down to 45 minutes. This is one of the steps to get her off the feeding tube and onto normal feeding though the bottle or breast.

Our new room is nice. It's very quiet because we are now at the end of the hall and no one is across the hall from us.

Until Tomorrow

Will post tomorrow.

Kayley's First Video

Enjoy!