Saturday, December 27, 2008

Slashing Kayley's Feeding Time







video

Well, I didn't wait as long to post this time so the updates are more manageable. Even so, we have plenty to tell you.

First of all, I finished the last post with a quick note about how we found out Kayley was allergic to the formula she was on. So, we switched her from Neosure to Pregestimil. And let me tell you, it's not cheap. But, we'll do anything to help Kayley eat better. That includes driving around Phoenix for 2 hours trying to find the new formula. I went from Target to Fry's to Walmart to Walgreens to CVS Pharmacy and finally found it at Basha's...which I might add, is only 1/2 a mile from our house. But anyway, we found it and Kayley has been on it for just over a week now. The GI doctor and our pediatrician told us it takes over a week to start seeing improvements and with Kayley, it will probably take longer. So far, we haven't seen the miracle we were hoping for but feedings are generally going a bit better.

Next, we were able to get in to the developmental doctor earlier than we originally thought. When Megan called a couple months ago, we couldn't get Kayley an appointment until March. However, we were put on a waiting list and were lucky enough to snag an appointment on December 18. To tell you the truth, my expectations weren't really that high because we've already had numerous doctors and nurses look at Kayley. But, to our delight, we were very pleased with our visit. Megan and I loved the doctor and she was very into helping us with all aspects. First, she noticed that Kayley was always tilting her head to the right. We've never noticed but after she said it, it became very noticeable. The big problem with it is that it could start to affect Kayley's vision. If her head is always tilted, her brain will tell her eyes to see things in a different way. So, we were handed some homework. Mainly, we needed to limit Kayley to turning her head to the left as much as we could. When we lay her down in her infant seat, we put a blanket on her right side to make it tougher to look right. Plus, we try to put everything interesting on Kayley's left. We were also given some stretches that we help Kayley with. I think all of what we have started doing has already helped. We don't notice the head tilt nearly as much.

The next thing that the developmental doctor was concerned with was Kayley's core strength. Since she knows its tough to put a baby with severe reflux on her tummy a lot, she really wanted us to start using Kayley's bumbo seat rather than her infant seat. With the bumbo seat, Kayley really has to stabilize herself and that helps develop her core strength. Again, we have seen tremendous improvement with Kayley's ability to sit up without slouching over.

And last, the doctor gave us a plan for helping Kayley eat. Our first goal was to cut down her feeding time. At that time, we gave Kayley an hour to eat. We were to cut that time down to 45 minutes immediately and not go over. Whatever amount Kayley took was fine. We had to stop after 45 minutes. Then after a week, if Kayley was taking 90% or more of what she was taking before slashing her time to 45 minutes, we were to knock it down to 35 minutes. We were very excited to try this because just feeding Kayley could take up to 7 or 8 hours of the day including preparation and burping time. So, off we went. To spare you the suspense, I'll just tell you that we are now down to 35 minutes. Kayley took over 93% of the 1 hour amount after we cut her time to 45 minutes. We've been down to 35 minutes since yesterday, December 26. So far, she's doing great. It puts a lot of pressure on the feeders, but we have come up with some innovative ways to distract Kayley while she eats. I guess that's one way to tell that Kayley's feedings still aren't perfect. She really needs to be distracted to eat well. Megan and Marla distract her with toys while I still walk around most of the time so she has something different to look at. Slashing the time from 1 hour to 35 minutes has been such an improvement for us. It gives us more time to play with Kayley...and Drew for that matter. It's just better all around for all of us.

The doctor also mentioned that she'd like to see Kayley move to solid food as quick as possible. Solid food will help with Kayley's reflux. So, we've started feeding her a little bit of cereal to see how she does. Right now, she really has no idea what to do with it in her mouth. Most of it just comes right back out. But, that's what we expected and we'll just keep trying until she starts getting use to it. And even though we're moving her to solid food, we still know the importance of Kayley getting the nutrients from the formula. After she can tolerate the solid food more, we'll add some scoops of the formula to any food that we give her.

With all these changes, we're due to go back to the GI doctor and developmental doctor in January and early February. Hopefully they are happy with Kayley's progress. We'll definitely keep you posted.

Tuesday, December 16, 2008

Holy Cow There Are A Lot Of Updates








video
Well, we've been pretty busy with Kayley the last couple weeks. Her eating hasn't really gotten much better since the last post. With all the things we've tried, it's even gotten a little worse.

After deciding that something really needed to be done to help Kayley eat, we asked our pediatrician if there was something else we could try. She recommended getting a feeding evaluation at Phoenix Children's Hospital. So, we set up the appointment for December 2 and went in. We weren't supposed to feed Kayley for at least 3 hours before the appointment so she would be hungry enough to demonstrate her eating abilities. It ended up being about 3 1/2 hours before we got into the appointment. Kayley was acting very hungry. That was perfect except that Megan and I were worried that she'd be so hungry that she'd take down the whole bottle in no time. Then we'd look like fools for bringing her in. However, Kayley showed her true colors. She was so starved but then only took about 10 cc's and was done. The speech therapist took over and couldn't get her to eat either. She determined that Kayley had a pretty good suck but just didn't want to eat. Kayley just eats enough to squash her hunger and then she's done. The speech therapist decided it was not a mechanics issue with the way Kayley eats but was probably more of a medical issue. Kayley limits herself based on her hunger. The speech therapist really wanted us to see a GI specialist before she did anything else so that we could rule out anything medically wrong with Kayley. She also gave us some suggestions. She had us switch to a nipple with a bigger hole in it and put more cereal in the bottle so that slows the speed at which it comes out. That has seemed to help the amount of formula we can get Kayley to take but it doesn't change the fact that she still fights it during the whole feeding.

So, we made an appointment with the GI specialist for December 4. We were really lucky to get in so soon because they are usually booked out a couple months. But, we thought Kayley's issue was bad enough so Megan asked to get in sooner and they obliged. At the GI appointment, the doctor just talked to us about Kayley's habits...eating, pooping, spitting up, etc. He laid out a plan to check 3 different things. First, perform an upper GI test to determine if Kayley's anatomy is all correct. Second, test Kayley's poop for blood. If blood is present, it means Kayley is allergic to her formula. And last, give Kayley medicine to help her stomach motility. Basically, help her stomach, rectum, and anus pass her bowel movements. The doctor said this last option is one he doesn't like to use much. There aren't any good medicines on the market for this. The one they had was pulled because it caused heart issues in kids. So, we started with steps 1 and 2 first.

I'll start with number 2 (fitting because it deals with poop). The doctor sent us home with homework. He gave us 3 cards and some sticks. The next 3 times Kayley pooped, we need to take some of the darkest poop in her diaper and "paint" it on the card. Again, this is to check for blood in her stool. Marla, Megan, and I were all lucky enough to act as artists. Kayley pooped on each of our shifts. Then, Megan took in the samples to get checked. We are still waiting for the results.

For number 1, we scheduled Kayley's Upper GI test for 12/10. Again, we could not feed Kayley 3 hours prior to the test. This time, she had to drink some barium while the doctor watched it go through her system. It turns out that Kayley doesn't like Barium either. She would not drink it at all. She screamed more than we've ever seen her scream before. The nurse and Megan had to hold her down while I used a syringe to force feed Kayley while the doctor watched. Luckily it only lasted for a couple minutes. The doctor determined right then that nothing was wrong with Kayley's anatomy. That was a good result because if there was something wrong, it most likely would have required surgery. The doctor did say, however, that Kayley has severe reflux. Before we even started filling Kayley's stomach with the barium, she was already starting to reflux. So, our next step was to wait for the stool results and see what the GI specialist thought of the upper GI results.

Later that day, we had Kayley's 6 month checkup. Kayley weighed in at 12 lbs 13 oz. It was a great weight gain and showed that we were at least successful getting Kayley to take a good amount of formula. Now if it just didn't take an hours worth of fighting with her. Everything else at the appointment checked out well. Kayley didn't enjoy her shots of course.

That night went by normally. Kayley even "passed" the barium from the morning. We thought all was good. However, the next day wasn't so fun. While Megan and I were at work, Marla fought and fought with Kayley to eat. Kayley screamed through all her feedings like she was in pain. She was trying to have a bowel movement multiple times but only squirts came out (I call them sharts but Megan doesn't like me to use that term). Then in the early afternoon, Kayley passed a very hard and big poop and there was blood in it. Marla contacted Megan who contacted the doctor. They said to bring Kayley in right away. Whenever they have blood in their stool, the doctor wants to see them right away. So, I took off from work immediately and picked up Kayley and headed to the doctor. Kayley's doctor wasn't in the office so we saw one of the other doctors. He examined Kayley and the poop that we brought along in a plastic bag. He found that Kayley had some tears in some of the fissures in her anus. And luckily, he felt it necessary to show me. Yep. There were tears. Then the doctor examined the poop. It was just too big and hard for her. It also contained some of the barium from the upper GI test. So, the diagnosis was severe constipation from the barium. We were sent home with instructions to put diaper cream on Kayley's butt and karo syrup in her bottles and then call with an update the next morning. Kayley struggled a little bit to eat the rest of the night but it was nothing like the episodes during the day. Her bowel movements returned to normal.

Another thing we did was contact the Arizona EIP (Early Intervention Program) to come out and evaluate Kayley again. This is the group that determines if Kayley needs extra help in any areas due to her being a preemie. A lady first came out on December 7 and decided that she'd like to start following Kayley to track her progress. She recommended that to her board and they agreed to help. It will be great to have some people with expertise stop by every now and then to check on Kayley and give us some guidance. Her first appointment was this morning but I haven't gotten an update yet. I'll have to provide that later.

Since Kayley's upper GI test, her eating has regressed. She really fights eating now and will only take the bottle if we walk around with her or if she is half asleep. No feedings finish before an hours time. Megan called our doctor again and she is going to discuss options with the GI specialist. In the meantime, we are trying to determine what could have caused this regression. It's like she has developed a feeding aversion. It's possible that she still remembers the episode when we tried to feed her barium so she has become very reluctant to take any bottle. That seems like around the time where her feedings started getting worse. Well, whatever it is, we have everyone possible looking into this. Hopefully we find a solution soon...

Not everything has been bad with Kayley. I hate to be so negative but those things just seem to be the most important right now. Kayley is a very happy baby otherwise. She smiles any time we talk to her and is starting to giggle a lot too. She's really getting to be fun. And yesterday, she rolled over multiple times while Marla was watching her. She did it enough times that Marla was able to get video of it (see above). She went from her back to her stomach which is a good feat. She hasn't even gone from stomach to back yet which is supposed to be easier. Kayley is also starting to grab and hold her toys a lot too. She lays under her play gym for a good amount of time just whacking and grabbing the rings and other toys.

Kayley still sleeps like a rock for the most part. Some days her naps are better than others, but one things for sure. She never has any issues sleeping through the night. Megan and I got lucky again. Kayley falls asleep during or after her 8 pm feeding and then sleeps until I wake her up for her 11 pm feeding. She pretty much sleeps through that whole feeding and doesn't get up in the morning until around 7:30 am when we go get her to eat again. We couldn't ask for anything better. Hopefully we can start bypassing that late feeding soon so I can get to bed earlier.

There are some pictures of Kayley and Drew while we were trying to get a picture of them for our Christmas card. Drew loves helping Kayley and giving her kisses but as you can see, he's not too sure he wants her on his lap. That's pretty much it for now. I need to start updating this blog more often so my posts aren't as long.

***UPDATE****After I got done writing this, I received an email from Megan. I didn't want to go back and change anything so I'm just going to give the update here. We got the results back from Kayley's poop screenings. They did find blood in her stool so we are switching to a new formula. It may take a while for Kayley to adjust but at least we found something! This is good because this could help out tremendously. However, I wish it wouldn't have taken so long for us to find this out. It just seems so simple. I will give you an update later on how this works out.

Wednesday, November 26, 2008

Mmmmm....Thumb!!!!


Drew starving for attention and showing Kayley what this thumb thing is all about.

Kayley's favorite thumb.


Trying to wake Kayley up to eat late at night...it's not working too well.


Chris, Jenny, Macie, and Kayley


Kayley is 5 1/2 months old now. She is a very good baby. She sleeps through the night without any problems. We normally don't hear a peep from her between midnight and 7 or 8 am. And, I have a very hard time waking her up for her last feeding around 11:30 pm. There's a possibility she'd sleep from 9 pm to 8 am if we let her. Too bad we can't do that because we can't afford to have her miss another feeding during the day. The more calories we can give her during the day, the better.

Kayley loves her swing which makes Megan happy. She smiles a lot, talks quite a bit more, and is even starting to giggle a little bit. The biggest development since the last post though is that she has found her almighty thumb. At first we thought maybe she'd be a finger sucker because they generally made it to her mouth first, but as soon as she found her thumb that's all she goes after any more.

My last post mentioned that we changed bottles for Kayley and it seemed to do wonders. Well, that didn't last too long. I guess the newness wore off and Kayley got bored again. Feedings began to get hard and long again. She was taking about the same amount that she always had but it puts such a strain on us when a single feeding could take an hour or so. The trend has been somewhat upward since then so we're hopeful that she's getting better. She was taking an average of around 80 cc's 6 times a day. Now she's closer to the upper 80's. We're still a little concerned so we are planning on seeing a specialist to help determine what the problem is. Sometimes she just doesn't seem hungry and sometimes her suck is just really weak. Hopefully the specialist will be able to figure it out.

Kayley's last weight check was November 14. She weighed 11 lbs 4 ounces. That's between a 1/2 ounce to an ounce a day gain since the previous weigh in. It's good that she's gaining weight but her pediatrician would like to see it more consistently around the ounce a day range. Kayley is still in the bottom 3rd percentile for her actual age. She is between the 50th and 75th percentile for her adjusted age. The developmental nurse is coming again today so Kayley will be weighed again. Hopefully she gains a bunch.

We've had a number of visitors since the last post. Megan's college roommate and her family were in the area so they stayed with us a couple of days. The day before they left, Drew caught the flu. I was at the Monday Night Football game when it all started so Megan had to take care of him. Needless to say, she got it right away also. Kayley and I stayed as far away as possible because as you know, it would not be good for Kayley to get sick. That's why we don't take her out in the public much and try to keep her away from kids with runny noses and colds as much as possible. Thankfully, Kayley pretty much got through unscathed. She has had a touch of diarrhea but hasn't acted sick at all. Kayley also had her first Synagis shot on November 4. That will help protect her from RSV during RSV season. The shot works for 28 days. Our insurance company approved her for 5 shots so she'll receive one every month through March.

The next weekend, my brother Chris, his wife Jenny, and their daughter Macie came to visit. They brought more of Macie's clothes for Kayley. It's like Christmas for Kayley every time they send us a package or bring an extra suitcase full of Macie's clothes. Too bad all we did was give them some of the flu. Last I heard, Chris and Macie both came down with it.

Tuesday, November 4, 2008

Happy Halloween!




All Right, All Right. I Know It's Been A Long Time





I'm finally getting around to another post. Here are some more pictures and another small update. Kayley continues to do very well except for her feedings. A couple weeks ago, we switched her medicine from Axid to Prevacid. It's a stronger medicine that actually decreases the amount of acid produced in the stomach. Hopefully it does the trick.

Last week, the developmental nurse came to the house to examine Kayley. She still has no setbacks to speak of except, of course, her feeding. The nurse weighed her and she was 10lbs 9 oz. That's around a 1/2 ounce gain per day since she was last weighed. It's acceptable but we are really hoping for more. Megan phoned the results into Kayley's pediatrician. She said she's happy with the weight gain but Kayley should be gaining more to catch up to what she should be according to her actual birth age. So, she is going to calculate an increased amount of calories to start giving Kayley so we get more bang for our buck for the amount Kayley does eat. If Kayley doesn't start gaining weight more like she should, the alternative would be to put a feeding tube back in. We really don't want that to happen so we're trying everything we can.

It doesn't help that Kayley now sleeps through the night. She started doing it last week. I feed her one last time late at night between 11:30 pm and midnight and then she sleeps until 8 am or 9 am in the morning. That's great for us but it cuts out another feeding during the day.

On Friday, we had a small revelation. We really liked the BPA-free bottles we got for Kayley and she seemed to take to them right away. However, we wondered if maybe she would like a different bottle better and start eating better. Luckily we had another type of bottle at home and we were able to try it Saturday afternoon. The only thing is that I had to do some handy work to make the hole in the nipple bigger for the cereal to come out. After we got everything ready, Kayley went to town. Evidently, she loves the new nipple on the new bottle. Saturday night she was taking around 90 cc's easily instead of her normal 70 struggling cc's. Then on Sunday, she continued on her new streak and averaged over 90 cc's per bottle. Instead of taking an hour or so to feed her, she was finishing the bottle in 15 minutes! We are so relieved right now. Hopefully this continues and it turns out that the bottle was the major issue. The nipples are very different and she just seems more comfortable now. The old nipples must have just worn her out. Megan picked up some more bottles today, so hopefully we got it right this time.

It's also worth noting that the Prevacid could be starting to work too. The directions say it could take 2-4 weeks for it to start to work. We're just past 2 weeks now. I can't imagine that it would make that much of an impact in one day but who knows. We'll chalk it up to the new bottle and the Prevacid for now.

Friday, October 17, 2008

So Many Emotions

Mom's Not Coming Home Until When?

I guess that's okay. Dad's fun too.



Megan and Drew are back in Iowa for her cousin's wedding. They get back on Sunday. In the meantime, Kayley and I have just been hanging out and having our ups and downs.

Saturday, October 11, 2008

More Pictures




If We Could Just Solve Her Eating Issues...






Well, the benefits of waiting this long to update the blog is that we have a lot of updates. The disadvantage is that I really don't remember where I left off. So, if I repeat some things, forgive me.

First of all, we officially found out that Kayley is not going to be supervised under the Arizona Early Intervention Program. She is simply doing to well. However, if we think at any time that Kayley would benefit from the program or if we see something wrong, we can contact them again to do another evaluation.

RSV (Respiratory Syncytial Virus) season is coming. That's the biggest reason that Kayley is pretty much confined to the house. RSV is a lung infection that we all can get. In adults, it isn't serious as it only gives us symtoms of the common cold. In newborns and preemies, it can be very dangerous and even fatal in some cases. Therefore, we are going to do as much as we can to make sure Kayley does not get this infection. That includes giving her the RSV shot called Synagis. Synagis does not prevent RSV but it does provide some protection against the effects of it. The shot is given monthly during RSV season and is very expensive. Luckily, Kayley's circumstances allowed our insurance company to approve the shot so our out of pocket cost is minimal. Thank God for insurance! Now we just hope that the shot doesn't need to do it's job.

In the last post, I told you that Kayley was 9 lbs 5 oz. Since then, Kayley had a weight check and a doctor apointment where we measured her weight. At the weight check a week and a half ago, Kayley was 9 lbs 12 oz. That was a perfect gain...1 oz per day for 7 days. Then yesterday at her doctor appointment, she weighed an even 10 lbs. That wasn't a great jump considering it had been about 9 days since her last weigh in, but the doctor was still very happy with it.

Kayley had another visit from the NICP developmental nurse this past Wednesday. Instead of trying to recall all that Megan told me, I'm going to paste in most of her email.

"Tracy from NICP just left. Kayley weighed 10 pounds, which is only up 4 ounces since last Wednesday. She is in the 90th percentile for her adjusted age for height and weight, but the bottom 3% for her gestational age. Height was 22 inches.

She said developmentally Kayley is where she should be. She said Kayley seems more alert than a 3 week old, but some other things she is closer to her adjusted age. For example, she didn't follow a colored ribbon, which babies don't start to do until 6 weeks old. She tried tummy time and Kayley had an absolute fit. She said that is from the reflux so we may need to do tummy time on a bed or something, but Kayley needs it. I told her that I notice Kalyey always turns her head to the right when she is in her infant seat and she gave us some stretches to do to make sure that doesn't turn into a problem.

I also told her about Kayley's eating issues and she thought it sounded like Kayley had pretty severe reflux. She said we need to make sure we are persistent with the pediatrician about treating it. She said that the neosure formula we mix in with the breast milk makes reflux worse because it is so heavy.

We also talked about the amount of milk Kalyey takes in and she said it should be around 22-24 ounces a day as a minimum. I told her yesterday (a very good day for Kayley) was 17.5 ounces. She seemed a little concerned, but then said she has been gaining weight so she isn't too worried yet."

So as you can see, Kayley is pretty much right on schedule. Again, the big obstacle we have is her eating. Most of the time it is a huge struggle to get her to take a decent amount. She has stopped crying through the feedings, but now either stops sucking or kicks and arches her back to get away from the bottle. And many times after we get some milk in her, she ends up spitting it back up. It has been very frustrating for all of us. It is an exhausting chore to get Kayley to eat. Sometimes an hour goes by before Kayley takes a satisfactory amount.

Needless to say, eating was our main concern heading into the doctor's office for Kayley's appointment yesterday. The good thing about the whole situation is that Kayley continues to gain weight. I definitely think Megan and I put a lot of pressure on ourselves to get Kayley to eat a certain amount. I think this stems a little bit from the doctor in the NICU wanting Kayley to take a certain amount per feeding before he'd let Kayley go home. In any case, it's still not right that feeding Kayley is such a chore. So after voicing our concerns to the doctor, she upped the amount of cereal we give to Kayley in her bottles. It use to be 1/2 a tsp per ounce. Now, we are giving Kayley 1 full tsp per ounce. I think we have to realize that Kayley is not going to take as much each time because of the amount of cereal we are now giving her. And so far, that has held true. It's a struggle now to get her to take 70 cc's when she use to take close to 80 cc's each time. Hopefully she continues to gain weight so that won't be an issue. Better yet, hopefully the extra cereal helps her feel better so she'll feel like taking more each time. I'm sure I'll let you know in the next post how that goes.

Another question we had was how long should each feeding session take and when should we stop trying to force more milk down her. In the NICU, we stopped after half an hour but we had the feeding tube as a backup. As I said above, some feedings see to take an hour or more. The doctor said she'd be all right with us just feeding Kayley as needed and as much as she'll take for a week or so. We can assess the situation after that to determine if it's working or not. So, we're going to try to stay around every 3 hours but we're also going to let Kayley dictate how much she takes. Hopefully she can get on her own schedule and run with it.

Kayley is still pooping pretty inconsistently. This past Tuesday, we had to give her another suppository. When she gets to that point, eating becomes so much tougher and as described above, we really can't afford to have it be tougher. The doctor would really like Kayley to start going more on her own. So, she told us to start giving Kayley 1 oz of prune juice a day. Maybe that will get the ol' pipes going.

The last point of business at the doctor's office was to get shots. Needless to say, Kayley wasn't too happy to get them. However, she got over it pretty quickly.

Drew, on the other hand, didn't know what was coming. He thought he was just along for the ride and to watch his sister get checked out. And, so did we. But, the office had the flu shots ready and said he could have one. So, out comes the needle and Drew got poked in the arm. He handled it pretty well. I think he was just too surprised to react too much. 20 seconds of crying was all there was.

Kayley was baptized this last weekend. As you can see from the pictures, we had some family in town for the occasion. My brother Matt and his wife Kim are Kayley's godparents. There aren't really many updates about this...just pictures.

Sunday, September 28, 2008

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?!

Thursday, September 18, 2008

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.

Friday, September 12, 2008

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.

Monday, September 8, 2008

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).

Saturday, September 6, 2008

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.

Friday, September 5, 2008

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