Catching Up

Since it has been a long time since my last post, we have a lot to catch up on. I'll start with Kayley's appointment last Monday with 2 therapists from the Arizona Early Intervention Program. The point of their visit was to evaluate whether Kayley has any developmental delays that need to be addressed. They meet with their whole staff this coming Wednesday but they didn't think Kayley would qualify for the program. That's good news because there are no signs that Kayley has any issues. However, Kayley would benefit from the one-on-one time she would get if she were in the program. I guess we'll wait until this Wednesday to know for sure if she'll be in their program. If she's not, that doesn't mean that she'll never be in it. If we or someone else notices an issue down the road, we could contact them for some help.

On Wednesday this past week, Megan took Kayley in for a weight check up. Without getting weighed every night, we really have no idea what to expect until after she gets on the scale. At the checkup, Kayley weighed 9 lbs 5 oz! That's pretty much right on what she should be gaining but we were still a little surprised. While Megan was there, she mentioned to the nurse that we were concerned with Kayley's feeding. It still seems to be an obstacle for her. She's eating a good amount but sometimes it's a real fight. If Kayley's awake, she often cries through the feeding like she's in pain. If Kayley is half asleep, she does much better but then it becomes a struggle to keep her awake enough to eat. Kayley has also started spitting and throwing up more. One of the therapists that saw Kayley on Monday told Megan that it sounds like Kayley has bad reflux and when she's awake, it hurts to eat. When Kayley's half asleep, she doesn't realize the pain she's in. Anyway, she strongly suggested to get Kayley on some medicine right away. The last thing we want to happen is that Kayley starts associating eating with pain. So, the nurse that Megan talked to in the doctor's office said she'd have the doctor call us right away. Luckily, the doctor was free when the nurse mentioned it to her and Megan was still in the office. The doctor came in and prescribed Axid for Kayley. It's a medicine that treats GERD (gastroesophageal reflux disease). Kayley has been on the Axid since last Wednesday night. It could take a couple days to a week to start working. At first we thought it was working great, but she kind of returned to her old self. Hopefully it starts working by this coming Wednesday. We really want Kayley to start eating better...mostly for her benefit but also because it gets pretty frustrating for us when we try to feed her. It's very exhausting.

Kayley has mostly been taking between 60-80 cc's every time and she's eating every 3 hours during the day. At night, we let her go 4 hours after her last feeding of the night. That makes it so she eats 7 times a day. We're discussing whether we want to change her schedule a bit to see if she handles eating better. I guess we'll wait a couple more days to see if the Axid starts working better.

With Kayley gaining so much weight, that means the newborn clothes get packed away. She's now into the 0-3 month clothes. She should be in these for a while, but who knows. To use a common phrase, "They grow up so fast."

Since coming home, we've given Kayley 2 suppositories after waiting 7 days the first time and 5 days the second time. We were pleasantly surprised this past Wednesday when Kayley presented us with a gift without us even helping to get things underway. Then to show it wasn't just a fluke, she loaded up another diaper for us yesterday. It's amazing the celebration that goes on when Kayley poops on her own. It's also amazing how fast we move to change said diaper and get it outside to the trash. Either the vitamin or the extra calories that Kayley gets turns her poopy diapers into something lethal. I've watched Megan change a couple of them and laughed at how she had to turn away periodically to get a fresh breath. Well, I got the one yesterday and holy cow. What can make such a little thing produce such an awful smell?!

Still Growing

It's been a while since I have created a post so I actually have quite a few updates. First of all, we had an appointment with a developmental nurse this past Saturday. This service is actually provided by the state for free (tax dollars at work). She came to our house for the appointment so that was nice. Her job is basically to examine Kayley and see if there are any concerns developmentally. She also asks us quite a few questions to see if there is anything out of the ordinary. When she got to our house, she walked in and took a look at Kayley sleeping in her pack 'n play. Her first words were, "Wow. Look how big she is. She looks like a regular newborn." It's a funny statement because Kayley is actually 3 months old. But, it's a good statement because since she was born so prematurely, they don't really expect her to look that way for a while. After Megan and I heard her comment, we were gleaming with pride over our newborn looking 3 month old chubby girl.

The actual examine went very well. The nurse was very happy with Kayley's development. She also weighed Kayley. Kayley was a wet diaper aided 8 lbs 12 oz. This is a 6 oz increase since her last weigh in at the doctor's office 3 days earlier. Again, no problems gaining weight. This is a positive because it allows Megan to try to breast feed Kayley more. Upon being released from the hospital, they only wanted Megan trying once a day because Kayley needed the calories from the breastmilk-formula mix through the bottle. Since Kayley is doing so well, Megan can try at every feeding. Kayley's next appointment with the developmental nurse will be in October.

Kayley and Drew seem to have a lot in common except for one thing. Drew is a very healthy pooper and Kayley is not. Drew is a 4 to 5 times a day'er and Kayley is a maybe-once-a-weeker...if we're lucky. On Monday, Kayley was going on about 7 days without a good one. Up until then, it didn't seem to bother her. However, on Monday, she finally had it and seemed very uncomfortable. It was really affecting her eating and her mood. So, in the suppository went and out the poop came. Kayley was much more relaxed and it helped her mood and eating tremendously. Later that night, Kayley took 110 cc's from me. That's a new record for us.

Speaking of eating, Kayley has been doing pretty well. She's still pretty inconsistent. She does well but there seems to be a couple of times during the day that she's either uncomfortable or just not interested in eating. It really becomes a fight to get her to eat at that time and she usually wins. Good thing she normally recovers and eats well the next couple of feedings. We have kept Kayley on a 3 hour eating schedule including through the night. She keeps her average cc's consumed in the 60's and 70's per feeding. The gas and spitting up has subsided a little bit since we have her on Mylicon. Don't get me wrong though, she's still the gassiest baby I've ever known!

Kayley had another doctor checkup today. It was basically to get Kayley's current weight and for us to ask any questions we had or voice our concerns. One of our biggest questions is about how to keep Kayley from getting sick. Can we take her outside? Can Drew go to playgroups risking the possibility that he may get sick and bring it home? Basically, the answer to those questions is yes, but be cautious. We definitely have to limit Kayley's exposure to large groups. However, Kayley can be taken on walks, etc. Also, there is no reason to punish Drew through all of this. He needs to get out and play. We're still really cautious in the house. We all make sure to wash our hands before touching Kayley. We have hand sanitizer dispensers placed throughout the house to use. Is that too much? Maybe. But is it worth the risk? We can pick up so many germs by just going to the grocery store. So, buy stock in Purell because we're going to keep using quite a bit of it.

Kayley's weight at the doctor came in at 8 lbs 11 oz. Yes, that is lower than the development nurse weighed her at on Saturday. But, since that weigh in Kayley has pooped. She drops quite a bit of weight when she does that. Also, as mentioned above, the developmental nurse weighed Kayley before changing her. Kayley's diaper was wet so that added some weight to the scale. Overall, the doctor was happy. We now just have to take Kayley back weekly for weight checks. We won't see the doctor unless something unexpected happens.

The last update from the doctor is that she told us to start putting a small amount of rice cereal in Kayley's bottles. This will help with her reflux. So, we started that today and Kayley hasn't flinched at all. Hopefully it will cut down on her spitting up and her reflux.

Crabbypants

Well, it's time for more updates. We're starting to get into the swing of things now. I've been back at work all week so Megan has been gracious enough to take the night shifts with Kayley...with me substituting every now and then. Also, Grandma Marla is back. She's over her cold so she's helping out during the day...just in time for her to babysit this Sunday while we go to the Cardinals game. Thanks Marla!

Kayley has been doing very well with a couple minor exceptions. She started to spit up more than usual when we fed her. It started out as just a couple feedings a day and then morphed into almost every feeding. Since she still needs to gain weight, we were getting a little concerned.

Another concern we had is that Kayley was really starting to seem uncomfortable and it was making her really crabby at least once or twice a day. At first she just needed to be held and we had to keep her pacifier in her mouth. No big deal. Then that started not to work. We needed to stand up and walk around with her or pat her back or butt constantly. Even then it would take a while for Kayley to calm down.

Both these issues, spitting up and being overly uncomfortable and crabby, had something in common. It seemed that after she let out some (a bunch) gas, it helped her quite a bit. Luckily, Megan had a checkup with Kayley's pediatrician yesterday. She asked if we could start giving her Mylicon. It's an infant gas reliever. The doctor said yes so we now give it to Kayley after every feeding. So far so good. Kayley had been eating better, spitting up less, and hasn't had those really bad crabby spells. Thank God for medicine.

Kayley has also been increasing her awake time. When we first got home, it seemed that Kayley was only awake for a little bit after one feeding in a day. It occurs more often now. It's a great sign, however, we like those times to be during the day. A couple of times she chose to be awake at night. Ah... the adventures of a newborn and sleepless nights.

And the last update for Kayley is her new weight. While at the doctor yesterday, they weighed Kayley. It's still very important for her to gain. She went up 6 oz in the last week! She is now up to 8 lbs 6 oz. We were kind of surprised given that she was spitting up during a lot of her feedings. She is right on track. The doctor said that they want her to gain between 1/2 and 1 oz per day for the time being.

Drew is starting to get a little bit more jealous. He hasn't been real naughty but he definitely acts starved for attention when we are tending to Kayley's needs. His big thing now is to come grab your finger to lead you somewhere. He's starting to pull that trick more when we're feeding or holding Kayley. Drew also has to be in on the action quite a bit. If we put Kayley's bottle down so we can burp her, he comes over and picks up the bottle to give it to us. He's so helpful.

I guess the other day, he also started mimicking Megan when she was feeding Kayley. We keep Kayley's burp rags in a low drawer that Drew can get to. He grabbed a burp rag and one of his stuffed animals, sat down, and then held the burp rag with the animal...just like Mom was doing. He'll be babysitting in no time.

Can You Guys Be Quiet?!

Well, the updates we have for Kayley are less and less. Therefore, I don't think I'll have a post every night. It will probably be every other night or around 3 times a week.

Kayley is doing great. Yesterday, she even had a bowel movement for us. That seemed to relax her a little bit. Today, Kayley sounded stuffed up to me so I decided to clean out her nose. Drew hated the bulb syringe when we used it on him in the past, so we bought a battery operated nose suction-er a while back. It worked very well. I got some good crap out of her nose and she didn't cry a bit.

Kayley has been feeding well. She's averaging around 70 cc's per feeding give or take a couple cc's. She's still eating every 3 hours even during the night. I stay up and feed her the 11 pm and 2 am feedings with a little nap in between. Megan gets up at 2 am to pump and then again at 5 am to feed Kayley. It's been working pretty well so far but I'm going back to work this week so we'll see how it goes.

Other than that, Kayley is learning to sleep through all the noise. Whether it's banging on the fireplace, running his toys across the floor, throwing his ball against her bed, or just plain screaming, Drew is loud. And most of the time, Kayley doesn't even wake up. Thankfully we're getting closer to the end of the summer and better temperatures so Drew can go outside more. Until then, Kayley will just be putting up with it (see the picture).

It's A Tough Job Looking After Your Sister

Drew has been his normal self with Kayley around the house. He still plays hard and sleeps well. However, I guess those extra trips over to make sure Kayley is still in her pack 'n' play has taken their toll on him. He ended up sleeping this morning until 9:15 am! And that's not the end of it. He went down for a nap at 11:30 am and got up at about 2:45 pm. That's a 3 hour and 15 minute nap. It's a tough job looking after your sister.

Kayley has been doing great. Her eating has been relatively consistent. Sometimes she doesn't seem to care to eat so it's harder to get her to take a good amount. But, she's averaging about 2 1/4 oz per feeding which is easily above 60 cc's. Tonight she took 90 cc's from me so that should up her average. Breast feeding isn't going too well though. Megan usually has to give Kayley a full feeding from the bottle afterwards. Hopefully Kayley starts to grasp that concept so Megan doesn't have double duty with feeding and pumping.

Kayley picks one time during the day to be her awake period. The first couple days it was during the night. These last couple of days it was in the afternoon. Kayley requires a lot more attention at that time. She likes to have her pacifier and we don't dare let it fall out of her mouth. Megan put her in her swing today and she seemed to like that. We're determined to get use out of it since Drew spent maybe a whole 3 hours in it.

Megan gave Kayley a massage last night and she really seemed to enjoy it. So, Megan attempted again today. I guess it didn't go well. Kayley let Megan know how much she didn't enjoy it. When Drew and I got in from the pool, Megan even asked if I could hear Kayley out there. She must have been really mad. The nurse that taught us the massage did say it would take a while for Kayley to get used to it. So, I don't think today will stop us. We'll definitely try again.

All in all everything is going very well. We're starting to get our schedule straightened out. Things are getting a little easier and we're getting less and less paranoid. Kayley is a very strong girl and we're realizing that more and more.

Thank You!

Throughout this journey, so many people touched Kayley’s life. Unfortunately, Megan and I really haven’t had a chance to say thank you until now.

First of all, we would like to thank Kayley’s Grandma, Marla. She made it possible for me to be with Megan when she was in the hospital and with Kayley after she was born. She took Drew in and was glad to do it. She allowed us not to worry about him. And the best part, Drew wasn’t impacted at all. He was with Grandma and he was happy. They became great buddies during that time. She even took care of Drew some Saturdays so Megan could go to the hospital and I could work on my golf game. Without her willingness to help out, there’s no way Megan and I could have been so involved with Kayley.

Next, we would like to thank our primary nurses at Phoenix Children’s Hospital…Lindsey, Kay, and Jill. They were all with us since the beginning and they were all so great to Kayley, Megan, and I. It’s a very stressful situation when your 3 lb, premature baby girl gets admitted to the NICU and they gave us so much comfort. We could tell how much they cared for Kayley. And, they were all so willing to answer all the questions that Megan and I had…and as you can imagine, there were a lot.

Also, we’d like to thank all the other nurses and staff at PCH. Many of them cared for Kayley numerous times and we added them as our associate nurses after Kayley had been there awhile. I could try to name all of them but there were so many that cared for Kayley that I’m afraid I’d miss someone. As I’ve said before, we were definitely at the best place in Phoenix for the situation we were in and this amazing staff makes it that way. As much as a parent worries when their child is in the hospital and not at home, we wouldn’t have wanted Kayley anywhere else.

And last, we’d like to thank everyone, family, friends, friends of family, family of friends, etc. who has followed Kayley’s journey. All of your thoughts and prayers were definitely appreciated and were definitely answered. Our ‘roller coaster’ ride through the NICU was limited to only a few ups and downs because of them. Our family is so lucky to have so many caring and thoughtful people on our side.

So again, thank you to you all. We couldn’t have made it through this without you!

Andy & Megan

First Full Day At Home

There aren't many updates from today. Since we're no longer in the NICU, it's just down to the business of eating, sleeping, and growing.

We took Kayley to the pediatrician today for her initial checkup. Kayley was weighed right when we got there. She came in at 8 lbs even. Kayley was 7 lbs 14 oz when we left the NICU. So, it looks like she's been doing pretty well at home so far. We are due for another check up in a week.

Tonight was a little bit of a challenge. Kayley just did not want to go back to sleep for me after her 8 pm feeding. She was up until just 15 minutes ago which was about midnight. She would snooze on and off but never really got into a good sleep. I don't know if it was gas or just the fact that she's still trying to adjust to the new environment. Either way, she's sound asleep now. Hopefully the rest of the night goes a little better. Tomorrow I think we'll have to sit Kayley down with Drew so Drew can tell her how this sleeping thing is supposed to go. That boy loves his sleep.

An End To The Journey In The NICU

12 weeks, 1 day, 10 hours, and 10 minutes. That's how long Kayley was in the NICU. Amazing. I still say that the time just flew by. It was an unbelievable feeling watching the nurse take the leads off for the monitor wires and then follow that by taking off Kayley's security ankle bracelet. Kayley started life out with more machines hooked up to her than imaginable. Now she has none. She's free from all that stuff and we're so happy about that. But, I would be lying if I said it wasn't stressful too. Having the security of the monitors letting us know every second what was going on with Kayley is gone too. We'll be paranoid for a while I think. But, Kayley has been so great these last weeks that there is really no reason at all to worry.

The morning started with Megan calling the hospital and and getting confirmation that Kayley was being discharged today. They had already started the paperwork so it was just a matter of us getting to the hospital, packing Kayley up, and bringing her home. First, we finished some things at home. We set up all the things Kayley may use in the coming months...pack'n'play, swing, infant seat, etc. Then, it was off to the hospital. We arrived at about feeding time for Kayley. So while Megan was going over some things with the nurse, I fed Kayley one last time in the NICU. After she finished, we began to pack up. We had a lot of stuff in that room. We practically moved in. If it wasn't for Megan slowly bringing some stuff home over the last week, it would have taken us multiple trips to the car. We got everything packed up and Kayley strapped into her carseat and then we were off. We strolled Kayley down the halls where we walked every day and night to visit Kayley. It was crazy realizing that this was the last time we'd be in the NICU. We were there every day since June 9th and now won't go back unless we go visit the nurses that took such great care of Kayley. Anyway, we took Kayley out of the NICU, then out of the hospital, and then into the car. It was Kayley's first time outside.

Upon arriving home, we were met by Sox (our dog), Drew, and Grandpa Mark. Unfortunately Grandma Marla came down with something in the last couple of days that didn't allow her to be here. I know it just killed her but she was the first one to admit that every precaution should be taken not to get Kayley sick. Hopefully she will get well soon so she can welcome Kayley home too. Sox was excited like she normally is when we get home. Then she turned curious. A couple sniffs and she was satisfied. Drew was very happy. He doesn't know yet that Kayley will play the part of an attention stealer. I'm sure he'll find out soon enough. The rest of the day, both Drew and Sox could not keep themselves away from Kayley's pack'n'play. They are both just barely tall enough to see over the top but they had to make sure Kayley was still there...especially when Kayley made a noise.

The rest of the day was a calm storm. We rushed to get a lot of things done. Can you believe we had over 12 weeks to do them and they never got completed? Anyway, I think everything is pretty much all set except for some finishing touches on Kayley's room (which she probably won't be in for a while). Kayley eats, sleeps, and poop's...well I guess not the poops part yet. She is in the downstairs pack'n'play during the day. The real challenge is going to be keeping Drew reasonably quiet. It's going to be a lot to ask since Kayley is basically in HIS playroom. We just may have to move Kayley to a different room once we're more comfortable with her being out of sight. Then, she'll sleep in the upstairs pack'n'play in our room at night. Since she is in the early stages of feeding yet, we will still need to feed her every 3 or 4 hours. That means waking her up in the middle of the night too. We're trying to work out a schedule but I'm sure it'll take a couple days and nights to get it perfect.

Kayley ate well today considering her big move and all the other activity. The nurses told us to expect maybe 1 or 2 challenging days with Kayley at first while she adjusts to her new surroundings. Then, it should get a lot better as babies tend to start to do better at home. It's been smooth sailing so far today but I don't want to speak too soon. I am taking the 2 am feeding and Megan is taking the 5 am feeding overnight (that's the benefit of a night person marrying a morning person). Hopefully there are no issues and Kayley has no problem knowing that it's night time and she should be sleeping. She had plenty of awake time after her 11 pm feeding like she normally did in the NICU so we should be good to go.

Tonight, Kayley weighed in at....wait a second. This is the first night in a long time that I cannot report Kayley's weight. I'll just say that she's looking chubbier than ever.

Home Sweet Home

We got news this morning that Kayley is being release from the hospital! They are processing her paperwork now. We are preparing things at home and then we'll be on our way to pick her up. More details later...

Now Where Do You Suppose(itory) You're Going To Put That?!?

Well, tomorrow could be the day! The doctor was satisfied with Kayley's milk intake yesterday and she continues to gain weight. He said that if she has another day today like she had yesterday, he would discharge her tomorrow. I believe he is still here tonight so I'm going to track him down to see if he can give us a definite answer. We would like to know as soon as possible so we can get ourselves prepared tomorrow. The news may come in a post later tonight.

Kayley struggled at the beginning of the day with her eating. Who can blame her though? She's gone 5 days without pooping. The nurse struggled to get Kayley to take 60 cc's at 5 am. Then, Megan was in at 8 am and struggled to get her to take 50 cc's. Kayley was visibly uncomfortable. So, the request was made to the doctor to give her a suppository and he granted it. The first one didn't work so they gave Kayley a second. It was a "successful chip" as they say in the nursing business. Kayley looked so much more comfortable and it showed in her feedings the rest of the day.

Kayley took 70, 80, 75, and 90 cc's at 11 am, 2 pm, 5 pm, and 8 pm, respectively. From my experience and from what Megan said, Kayley ate so much better. She started out well like she normally does but then she kept going. She didn't start to squirm or spit the nipple out like she did all the previous times. She finally has room in her tummy.

Given that Kayley pooped today, we were not expecting much from her weigh in. She had so much built up that she released that we were sure she'd drop some. But, she actually went up 5 grams. She is now 3595 cc's (still 7 lbs 14 oz). That's not a big gain but I'm counting it as one given the circumstances. Any gain at all is tremendous.

**I'm just adding an update to the post. I spoke to the doctor and he is waiting to make his decision about discharging Kayley until tomorrow morning. He wants to make sure she continues to eat well through the night. So, we'll know tomorrow morning whether or not Kayley is going home. I have a feeling she will be. She just took another 78-ish cc's from me. I'm sure I'll add a new post tomorrow morning after we find out.

Taking This Going Home Business Seriously

I don't know if Kayley heard us talking about what her goals are but she definitely took action. I believe she took over 67 cc's at every feeding today. And tonight at Kayley's 11 pm feeding, she took 90 cc's! I think she finally wants to come home. Hopefully the doctor tomorrow sees it the same way. Many of the nurses believe Kayley is ready and so do we. Who knows. The doctor could come in tomorrow and send her home. That would make us all very happy.

But, of course there has to be an obstacle. Kayley has gone 4 days almost 5 without pooping. The night nurse spoke to the doctor this morning about it but he was not concerned at all but it could prolong our stay here. He said since she hasn't stopped eating and she isn't throwing up her milk, they are not going to do anything right away. Basically, it's not affecting her too much. We think she would eat better after she goes, but I guess we'll just have to see. A suppository could be in the works if Kayley doesn't go soon. Maybe the rumblings I heard under Kayley's blanket just now are the start of something. I won't get my hopes up too much. I hear those rumblings from Kayley a lot.

Another plus for the day is that Kayley gained weight again. She is up 10 grams from last night. That means she is now 3590 grams which is still 7 lbs 14 oz. But, a gain is a gain and we'll take it.