7/31/08 - NICU EDUCATION

Hey there,

I wanted to explain a little bit about the machines in the NICU, so everyone can kind of get a feel of what we see. If I were in your place and I heard you talking about desats and I saw all those wires hooked up to Kayleigh, I wouldn't know what you were talking about. So I decided to take a few photos of the machines that are hooked up to Kayleigh and educate you all a little so you understand what we are talking about.

In the first photo, you will see Kayleigh's monitor. The top green line is her heart rate and she usually varies from 115 - 180bpm, but her average is around 145bpm. Kayleigh has a shiny gold heart sticker on her chest that monitors her heart rate. The blue line is her oxygen saturation. This is not supposed to be higher than 98 or lower than 85. If the machine starts to chime, you will notice she is satting too high or too low. If it is too high, then the nurse will turn down the amount of oxygen she is getting. If it is chiming too low, that means she is having a desat. This is caused by not getting enough oxygen, either by not breathing or the nose plugs have come out. There is a strap with a bright red light that is attached to Kayleigh's foot that monitors her saturation. We call it her E.T. foot. If you look back to some other photos, you will see what I am talking about. The bottom yellow line is her respiratory status which monitors her breathing. There is a sensor on her tummy that measures movement. If this line is flat, that means she is not breathing and then you will notice her oxygen saturation (blue line) start to drop and if that drops too, her heart rate will follow causing an all our DESAT!!! As you can see, her heart rate looks good, her oxygen is good and she is breathing. That is how we want it to be always :)

This is a photo of the amount of oxygen she is getting. If she is satting too high, they will turn this knob down and if she is satting low, they will turn it up. Right now, she is doing AWESOME and is right around 24% oxygen. The lowest setting (21%) is room air, like what you and I breath.

This photo right here is the bubble of the bubble CPAP. I can't begin to tell you how it completely works, but I do know that it really does have a bubble. ha-ha Actually, I was told that the bubble helps keep the sacs in the lungs from closing, so we don't have respiratory failure. It is really tough to inflate a lung after it deflates, so we want to refrain from that happening.

Kayleigh has a tube that runs through her mouth all the way to her belly to give her Mommy's milk which by the way is coming in great. Aimee filled up one of her little containers and half of another in one sitting, which will feed Kayleigh a full day if she was getting her maximum amount of feeds. Way to go Mommy!!! Kayleigh also has a couple IV's where she will get her medicine, like the Dopamine photo above. Those machines are cool because they are set to give her the medicine over a period of time, so the nurses don't have to sit there and squeeze the syringe themselves. She also gets her nutrients in another IV (Tripple Mix) which I joke by saying that Kayleigh is "Brown Bagg'n It". Beyond the healthy milk from Mommy, they make sure she is getting a lot of proteins, fats and carbs with the extra nutrients.

Well that is it for the lesson today. Kayleigh is having another great day. The test results came back and the urinary track infection was the reason she was having a rough day the other day, but the infection is no longer. The medicine they gave her cleared it up and she is doing great. They increased her feeds to 6ml today and will increase it tomorrow if she continues to do well. I am ready for her to get to 12ml and have no issues, so she can grow! She didn't gain any weight from last night, so she is still at 747 grams. She did have a couple desats, but the nurse explained they only dropped in to the 70's (Which for Kayleigh ISN'T a true desat). I didn't take any photos of Kayleigh tonight because with that Bubble CPAP on, she doesn't look any different from all the other photos with it on. So the only thing different you would see are her sheets. But if you really want me to take photos of her sheets, then I will :)

If you all have any questions about anything or if you want to just email us personally (If you'd just rather not post), please email me at Adam@TeamFreemanProperties.com. I hope you all have a blessed day tomorrow and keep praying for Kayleigh to grow :)

Love,

The Freemans :)

7/30/08 - Taking a night off :)

Sorry everyone, but we have had a very busy day so Aimee and I are going to sit down and watch "Big Brother" and "Never Back Down". One is a tv show that I am sure 99% of you watch and the other is one of my favorite movies that just came out on DVD.

Kayleigh is doing really great today. She has only had a couple minor desats, but nothing crazy. They did realize that she has a urinary tract infection, so that could be another reason for all the desats the other day. They are giving her some medication to take care of it and it seems she is doing better now. She was sleeping very comfortably when we were there tonight, so that makes us feel great.

I wish you all a wonderful evening and day tomorrow. Thanks again for all your prayers and for those who purchased a bracelet. God Bless!

The Freemans :)

7/29/08 - A Perfect Day, Almost.

Snug as a bug in a rug :)

It was quite funny as Aimee and I were standing next to Kayleigh in her isolette. Aimee told me that I can title tonights blog as "A Perfect Day". Then...Guess who got the last word? Yes, Kayleigh. She had an apnea spell, making the bells chime and then a desat right after it to make things even more exciting. She quickly recovered back to normal and if she could make a sound, I would have heard a giggle like no other. That right there goes to show she is a true Freeman as we are all practical joksters.

Other than that small little spell, she was wonderful today. Tonight they will start her back on her feeds once they get her final blood culture back, but they will only be giving her 4ml. So we have to take a few steps back with the amount of food she will be getting, but hopefully we will be back up to 10ml in no time. She even gained some weight over night without getting any food yesterday. She weighed in at 737 grams which you would also have to take account for the CPAP, but her weight is right around 1 pound 10 ounces.

We want to thank those who have purchased a bracelet. We will be making an order shortly and we can't wait to put together the scrapbook with all the family photos of everyone wearing their bracelets. I guess I am just so excited for the day that Kayleigh can appreciate all the people pulling for her and this will be a wonderful way to do just that. Thank you all from the bottom of our hearts.

God Bless,

The Freemans :)

7/28/08 - Just a Bump in the Road, No Problem!!

That is exactly what Kayleigh is saying right now! "Yesterday was just a bump in the road, No Problem" as she is just about back on track. It was great to see Kayleigh without the CPAP Beanie on so we could see her face and hair. She didn't grow much hair and it still doesn't really determine whether we are going to have a blondy or a burnette. She did take a moment to look at Daddy for the camera. Sorry it didn't come out real clear, but I didn't want to use the flash and scare her, let alone hurt her eyes. I got to hold her for a moment while the nurse changed her sheets. She is so tiny in my hands that I just still can not believe my eyes.

Today was a very productive day. Kayleigh had a couple desats throughout the whole day, but was great for the most part. They weaned her oxygen down to room temperature with the vent, so that is crazy since yesterday she was struggling with the CPAP. I really think that Kayleigh just doesn't prefer the Bubble CPAP because they can never get it to fit her good for long periods of time and it causes her stomach to be bloated with trapped air. Speaking of her stomach, it has gone down quite a bit and that could be because of her not being on the CPAP or that massive poop she had today.

The x-rays came back with no issues with her lungs and her blood gasses came back normal. They said they would put her back on the CPAP, but since they just moved her to the vent, they don't want to keep intubating and extubating her. Sometimes Kayleigh will extubate herself and they said they will leave it out if she does it. We noticed today that she just loves to pull on the tube and also grab wires and pull them out of their set places. Since everything was moving back to normal, they started her feeds back again.

I am just pleased with all the issues going on yesterday, they were all taken care of and she has cleared the hurdle and continues to move in the right direction. We are so proud of how well she is doing. I felt some of the bricks fall right off my back today because I realized the balancing act has pretty much been figured out. Since we have had some good days and some bad days, I feel like the doctors and nurses have all figured Kayleigh out to the point that they know what to do if she starts to have some issues. It is not so much a trial and error anymore. At the beginning, it may have taken a couple days to figure out what could be causing the desats and apnea, and then another couple days to figure out how to treat it. Now, it took one day to notice a problem and one day to fix it. That means the world to me and allows me to not get so parynoid when something starts to go bad. Just as long as we don't have anymore surgery surprises, I will be okay.

Now this is totally in left field, but did you ever want to know what veterans from the war ever talk about when you go in to your local Wal Mart or McDonalds early in the morning. You think they would be sharing their old war stories, but then over time you might think they would run out of stories to tell. I have had the pleasure to meet many different people throughout Kayleigh's journey, but one that stands out above the rest touches my heart very deeply. I just learned from an Aunt of mine that there is a group of veterans from the Vietnam War who meet every morning for coffee at a Bob Evans in a very very very small town in Ohio. Everyday, they talk and pray for our sweet Kayleigh and you would think that our little girl would be the last thing on the minds of such heroic men of war. To those wonderful veterans; Our family is truly blessed to be the topic of conversation every morning. One thing my little girl does have in common with you guys is that she is a true fighter. God Bless you and Thank You for serving our country with honor and Thank You for praying for Kayleigh.

The Freemans :)

7/27/08 One Step Back

I guess when you have so many great days, your bound to have one bad one. Let's just pray that it is only a small setback and we can fix the problem and continue to move in the right direction.

Throughout the whole day today, Kayleigh was having a lot of desats and apnea spells. Her blood gasses came back abnormal, so they put her back on the vent. They thought her desats might have had something to do with the eye exam they performed. Good news is that her eye exam came back normal, but we are not out of the woods yet as they said she could develop problems as time goes by. She is just a little too premature to know just yet. Everything seems to be looking good with her eyes right now though. They also did some tests to make sure she did not have an infection, which could be causing the desats and apnea. On the other hand, they noticed her tummy was swelling up as if she was bloated from the feedings. Also, they noticed her hemoglobin level was low and on top of that, the nurse felt like Kayleigh's heart murmer was sounding louder than normal. So they had all these issues which one or all of these things were causing her to have a really rough day.

So, they took an x-ray to look at her lungs and her belly. The lungs looked a little wet which shows signs that her heart was working harder than normal again. They gave her one dose of Lasix tonight and she is going to go on antibiotics incase there is an infection. They noticed the belly was swollen because there was too much trapped air due to the CPAP, so taking her off the CPAP and extracting the trapped gas will help with that. Plus, getting her on the vent will help with her blood gasses once they set her at the right level of oxygen. They are also giving her a blood transfusion again tonight to help increase the hemoglobin.

WOW, What a busy and exciting night for Kayleigh. If one thing isn't going great, everything isn't allowed to go great in the eyes of Kayleigh. She doesn't like to make it easy on anyone, that is for sure. So it certainly stressed us out at first, but then now that every issue is being attended to, we feel much better. I just hope they take care of the problems quickly and we can get back on track. Since her head piece was taken off, they were able to get a true reading of her weight. She was 672 grams which is around 1 pound 7 ounces. Her length came in at 12.4 inches so she is just slightly bigger than your footlong at Subway. ha-ha!

We will be up there for quite sometime tomorrow and since she has her beanie off, we will be able to take some good photos. Please pray that she gets back on track and can focus on growing again.

God Bless,

The Freemans

7/26/08 - Our Hands

Today was another great day for Kayleigh. She is just amazing us all every single day and we are so blessed for the good days. She started her day off with some desats, but when the nurse changed her diaper, she figured out why Kayleigh was so upset. She had the biggest poop she has ever had so far. It is funny how we get so excited over her accomplishments, and right now it is her poops. She had so much, she filled up the diaper that doesn't even fit her in the first place. After her diaper was changed, she straightened up and started to not desat anymore.

We came up to see her this afternoon and she was getting her feeds at that time. She is now up to 10ml today. She seemed to be cranky though during her feeds. She didn't liked her arms or hands to be touched, but if you cupped your hand over her body, she was completely fine. As you see in the photo above, I was able to snap a picture while her hand was resting on mine. Her hand was more on top of mine, but by the time I grabbed the camera and took the photo, she moved it. ha-ha. I just called to get her weight and since she pooped quite a bit more than usual today, she dropped a little bit of weight. She weighed in at 692 grams, which this nurse takes off 22 grams for the CPAP hat and I am not sure if the others did that as well.

Brandon was so cute today. He read Kayleigh "Goodnight Moon" which is the book that Aimee used to read to him when he was a baby. He read it out loud with all the nurses around and he didn't get shy or hesitate one bit. He is going to be such an awesome big brother.

Thanks for all the prayers and wondeful words of encouragement. We just hope these good days continue so she can grow and we can tackle the surgery hurdles with flying colors. We are so glad to have everyone there for support. It means the world to us.

The Freemans

7/25/08 - Making Progress & AWESOME IDEA!!!

Today was another great day of progress. Even though Kayleigh is plugging away on the Bubble CPAP, her oxygen was weaned down to around 22-28% all day long. She only desated a couple times throughout the day, but picked herself back up. They said that if they can keep her below 30% for a couple days, they will try the nasal cannula again. There is definitely no rush though because we want to focus on her growth more than anything.

They have increased her feeds to 9ml because she continues to tolerate the feeds really well. However they are going to lengthen the time to an hour that they feed her because they notice she desats more when it is given to her in a shorter time period. I guess it backs up and she gets a full tummy. She pooped a couple times today though, so that only means they will increase it again tomorrow. The more food we can give her, the quicker she will grow so we can get the surgery completed to insert the pulmonary band. The band is there to limit the amount of fluid build up in her lungs before we can do the surgery to close her VSD (Hole in lower heart chamber). We have to get to 1000 grams first for the band, but we are almost there. I just called and she weighed in at 759 grams which is 1 pound and 10.8 ounces still, like last night.

The awesome news is, the respiratory nurses said her breathing is sounding great and that is why they stopped the Lasix yesterday. On top of that, the cardiologist have stopped the Digoxyn too because her heart is sounding good and she is not showing any signs of distress. Both of those medicines were used to help her apnea issues by pushing the heart a little harder to deliver oxygen throughout the body (Digoxyn), while removing the excess fluid in her lungs (Lasix). So now we will just need to pray that she continues to do well so she doesn't have to go back on those medicines. If she shows any sign of issues, they will do an x-ray and a echocardiogram to determine what to do.

Aimee got to do Kangaroo care for about 20 minutes today which is more than before. We keep increasing it everytime we do it, so that is progress. We got some good photos and video, so I hope everyone enjoys it. I was able to set Brittany in the isolette next to Kayleigh to really show how tiny she still is. If you go to a store that sells Webkins, look at the Cocker Spaniel and you will get a true understanding of how tiny she is.

***There were several people that asked if we were selling the bracelets and at first we decided we didn't want to add another thing to our plates, but then we figured since so many people wanted one already, that we should do somewhat of a fundraiser for Kayleigh. So Aimee and I thought that we would put the money raised towards something that Kayleigh could use when she comes home from the hospital and everyone who contributed could sport a pink bracelet to pull for Kayleigh. Also, what I think would be a great idea is to have everyone who contributed in the fundraiser, email me a photo of your family along with a note to Kayleigh so we can put them all in a scrap book. I think it would be really really awesome if everyone took photos with their bracelets on so we can use those photos. That way Kayleigh will always remember the people she had pulling for her for the rest of her life. We decided each bracelet would cost $5.00 and we will be putting in an order over the next week. So if you are interested, please click on this link - "Get a Kayleigh Bracelet" at the top right on the side tool bar. Don't forget to add your address so we know where to send the bracelets. Over time, I will let everyone who bought bracelets know the deadline about when to get your photos in along with your note.

I hope everyone is doing well. Thank you all for your prayers and we wish you a wonderful weekend. If you get a chance, Brandon wanted me to tell everyone to check out his blog tonight as we did some home videos that will give you quite a laugh. We had a blast putting them together, so I hope you all enjoy. (Click here to see his blog)

The Freemans

7/24/08 - We've Banded Together

Today was an amazing day in more ways than one. First of all, our wrist bands came in today and we will be sporting them around everywhere! I certainly will not be scared to wear pink now. I have been waiting for over a week for these bands to come in and I was so excited when they got here today.

Second of all, Kayleigh had another awesome day. Are you sitting down??? I don't know if this was a huge fluctuation or just a crazy chance, but Kayleigh weighed in at 762 grams tonight, which is 1 pound 10.8 ounces. That is 72 grams more than yesterday. I am really looking forward to seeing what she weighs in tomorrow night to see if that was just an error or actually true weight gain. They usually will weigh her 2-3 times over and take either the median or average number. That is unbelievable growth though.

They did increase her feeds to 8ml today and are you sitting down again???? They stopped her Lasix because they said her lungs are looking much much better. They are going to do another scan tomorrow to double check the fluid. Other than that, she had a few desats today but they think it is due to her CPAP positioning more than anything else. It will be seven days since we have seen her without the CPAP tubes and beanie on. We are ready to see her pretty little face so I can take more photos for you all. She has grown 4.2 ounces since she has had the contraption on, so we know she is going to look a little different when she gets it taken off.

I have been reading a wonderful book that I want to share with you all. It is called "For the Love of Rachel" by David Loewenstein. It is about his families journey through the NICU and his daughter's battle with prematurity. I highly recommend it to all of you out there. I had the pleasure to converse back and forth with David this past week because I too am in the middle of writing a book about our journey. His book has been very successful and what better person to ask advice from than someone who has been in my shoes. I wish David and his family all the best.

Thanks everyone for all your prayers and words of encouragement. Without you all, we would be lost.

The Freemans

7/23/08 - Gett'n Blood

Here is what a blood transfusion looks like for a preemie. They have a device that automatically presses a syringe full of blood through an IV into Kayleigh. This will be her fourth transfusion so far, but she is doing really well with each procedure.

We just got an update and she is doing fantastic. There were a couple desats earlier today, but nothing else since then. Aimee and I brought a really dark blanket from home to cover her isolette so barely any light can get in. This will not only allow her to get better rest, but maybe it is helping with her desats.

They increased her feeds to 7ml today which is more than we thought, but we are not arguing one bit! Woo hoo. EAT Kayleigh EAT!!!! She weighed in at 690 grams tonight which is 1 lb - 8.3 ounces. Woo hoo. GROW Kayleigh GROW!!!! Because they increased her feeds, her poops are increasing too. She had 3 big poops today. Woo hoo. POOP Kayleigh POOP!!!! We are certainly blessed to see 4 wonderful days in a row!!!

Thanks everyone for the prayer chains, prayer circles and all the other kind of prayers. I can see them working in Kayleigh each day. You all are a blessing to our family and please keep things going. Tell your friends, co workers and churches to pray, pray, pray!!!! When we are able to bring her home, we are going to throw her a welcome home party like no other! I just wish it wouldn't take Kayleigh several years to find out how many wonderful friends that are pulling for her right now. Thank you God for blogs!

The Freemans :)

7/22/08 - Daddy's in Love

Yes, I am so in love because I got to hold my precious little girl again today. Aimee took a great photo of her laying on my chest sound asleep. It was so amazing to feel her move her tiny little hands against my skin. She was satting good for fifteen minutes before she had a couple episodes where her heart rate and oxygen dropped, meaning we had to put her back. I could tell she really liked it when I hummed a song to her. I guess the vibration was comforting to her because she looked so relaxed laying with me. The funny part was when they put Kayleigh on my chest, she farted and you can tell something else came with it because it sounded raunchy. What is it with Kayleigh trying to poop on me? This is the second time! ha-ha

She had a really good day today. They increased her feeds to 5ml because she was tolerating the others very well. They have moved her lasix to every other day, which the lasix is helping remove the fluid in her lungs. Aimee and I noticed that her eyes and mouth seem to be much bigger. She yawned a few times today and that mouth was huge. Aimee made a joke to the nurse saying that big mouths run in the family and I would agree. Kayleigh opened her eyes today and I could tell a big difference in size. This is the first time she opened her eyes for us in the past couple days, so it seems to me that things are starting to develope quick! We still have not gotten a chance to see her hair and how much that has grown over the past couple days. I can't wait to see that.

The note you see at the top is a note from Kayleigh to all the nurses who take care of her. We want to make sure they know who Kayleigh is so they have an invested interest beyond normal care. I want them to feel a part of her family and to take pride in the work they do when they are with her. Hopefully it will help. We have picked up some primaries to take care of her when they are on shift that we really like and we added another great one today. We are so pleased with the primary nurses we have so far. I am sure Kayleigh is too :)

I sent this out in an email today to people we updated while we were in the hospital. I wanted to add it to here on the blog as well incase the person we are trying to track down was not on that email list. Aimee received a call while she was at the hospital from a flower delivery place asking if we were going to be in that hospital room the next day. We told them we were not going to be there and we gave them our home address to send the flowers to. We did not receive the flowers at our home address and since they called Aimee on the hospital phone, we were not able to retrieve the number to call them back. So, if you didn't get a thank you note for sending flowers, please let us know as this person is you :)

Aimee and I can't thank you all enough for all the prayers, gifts and love you have given us over the past several weeks. It means more than anything for people to reach out and contribute something for Kayleigh. She is going to be thrilled when she is older and finds out how many people were pulling for her through these tough times. Whether we have known you forever, or you just posted for the first time today, we love you all like family and are so greatful to have you in our lives. You all have shown the true meaning of love.

Thank you so much!

The Freemans

7/21/08 - HAPPY 4 WEEKS OLD!!!!

4 WEEKS OLD!!! Where has the time gone? I just hope the rest of the time goes just as fast. Today was a boring day and we all know that boring days are awesome! Kayleigh's sats were good all day with only a few ups and downs with her breathing. They still have her on the Bubble CPAP, but they weaned her oxygen down to 26%. When Aimee and I went to visit, one second she would be satting high and then the next second, she would satting low. She was just all over the place.

Aimee was able to kangaroo for just about 10 minutes before Kayleigh started fussing and we had to put her back. We were just shocked that she was able to kangaroo in the first place because she had that big head piece on. She looks so cute though, but we are ready to see that pretty face again. The nurses did increase her feeds today to 5ml, but she only weighed in at 603 grams tonight. The nurse said she weighed her without the CPAP on so that is probably why it was around 30 grams less than yesterday. I wish they would all do it the same way though or atleast weigh her both ways.

We were able to sit down with the family planner today and go over some things. The cool part was, we were able to write down Kayleigh's likes, dislikes, concerns, and goals that will be placed on Kayleighs isolette for all the nurses to see. The biggest problem we are having right now, is that we are learning the nurses and we are wanting them to know Kayleigh's story. We want them to know Kayleigh and understand that this baby wasn't suppose to be here. I don't want to pull anything away from all the other babies that are in there, but I want the nurses to understand that Kayleigh is OUR miracle. We have some primaries, which is awesome but we know that our primaries are not always going to be there. Most of them do, but we want everyone to care as much as we do. :) The planner was awesome and we are so glad to have her help us.

Another NICU baby we have met through this journey is Parker. Parker had an ultrasound today to check for a possible hernia. Can everyone please include Parker in your prayers tonight. Parker was born at 29 weeks and has been in the NICU for 8 weeks so far. He is a cutie! I have included Parker's story over to the right on my tool bar.

Thanks everyone!

The Freemans

7/20/08 - 3 IN A ROW!!!!

Three great days in a row is helping Mommy and Daddy's hair grow back. Sorry I didn't have any photos today. She was in the same exact position as she was yesterday, with the bubble CPAP and the beanie almost covering her eyes. The only thing noticeably different was her cleaner diaper, especially after that big poop she had yesterday. But I don't think I should take photos of that. ha-ha

Kayleigh has been doing great today, only recording one desat which hung around the 60's. Normally, she goes down to the 40's or even that one day she was down in the single digits. So we are much happier to see her where she is at. They weined her oxygen down to 25%, so hopefully she can hang out there comfortably for a while at that rate and GROW!!! If she tolerates her feeds today at 4ml, they will increase it to 5ml tomorrow. They said that if she continues to do well with the food, their plan is to increase it every 24 hours.

They are going to do some routine blood work later on and they'll also measure her so we can see how much longer she has gotten. Aimee and I can tell that her cheeks are starting to fill in and her hands/feet are really getting bigger. She weighed in at 654 grams last night, so her weight increased just a tiny bit. Since she has had her beanie on for three days now, Aimee thinks that a lot more hair will appear when they take it off. Just last week, she was getting more and more peach fuzz each day that went on, so we are excited to see what it looks like now.

For those who are praying for Adleigh, I wanted to give you an update and let you know her surgery went great and she is recovering well. You can follow their story also as I have a link over on the right tool bar. Liana shares a room with Kayleigh and Adleigh is just over in the next room. Every now and then, Liana and Kayleigh both like to keep the nurses busy by acting up at the same time. I guess they like fighting over attention. All three of them are a true blessing from God!

Thank you all and I will try to get some photos tomorrow.

The Freemans

7/19/08 - Back on CPAP - Woo Hoo!!!

Doesn't she look like a scuba diver?

Well, after a good night last night, they decided to put her back on the bubble CPAP this morning. I spoke to the Doctor in depth about how they decided when it was time to switch from the vent to the CPAP to the Nasal Cannula, especially when our main goal is for her to rest and focus on growing. He said that Kayleigh will not burn enough calories to make a difference if she has the apnea episodes, even when it appears she is not getting sleep and wearing herself out. The most important thing for her to grow is the amount of feeds she will be getting as long as she can tolerate it. So the reason she wasn't growing was not because she wasn't getting enough sleep, it was because she wasn't getting enough food.

The good news about her feeds is that yesterday they increased her feeds from 2 to 3ml and today, they are increasing it to 4ml. So she will get that much every 3 hours. That will help her grow. They are just going to keep an eye on Kayleigh and make sure she can tolerate that amount of increase or it could cause back up and cause infections. They don't want to give too much too soon. So with speaking to the Doctor, it cleared up my worries about whether or not her breathing assistance is going to affect her growth.

Overall, her day is going great so far. She was doing well on her breathing and not having any issues with desats. Being that the bubble CPAP is almost too big for her, it kept falling out of position, so it caused Kayleigh to not get the oxygen she needed. Her sats would drop, but then her heart rate wouldn't, so we knew right then and there it was out of position. They had to wrap it around her head and even put a beenie on to strap it in place. The picture almost like she is uncomfortable, but she is doing just fine. They had to get a smaller beenie because the one you see in the photo was too big and it almost covered her eyes completely.

The funny part of the day was when I changed her diaper. She had peed in her diaper, but there were only small small smears of poop. As I changed the diaper and wiped her butt with the wet cloth, I must have triggered her bowels because she had an explosive blow out. She almost squirted me in the process. It was so funny, I was almost in need of a changing too. So we threw on a new diaper quickly so she can finish her business.

Aimee is also doing a great job. This morning, she had the most milk she produced so far. It covered the bottom of her little cup about a half of an inch deep. That is a major improvement. She was so blessed to have met someone on the message board who sent her some Domperidone at no charge to help out and it seems to be working. We are so greatful because to order it, it would have taken a couple weeks and we didn't have time to wait. Kayleigh needs this liquid gold as quick as possible if we need her to grow and now Aimee is producing enough to make that happen. It is amazing how God makes everything work so perfectly. We are so proud of Aimee!!!

We are happy that today was another good day. I know that my posts always seem cheery, but I am really good at hiding my emotions. To be honest with you all, this is the most stressful situation I have ever been in during my entire life. It is so hard to see your child, who you can barely touch because you are afraid to disrupt her, let alone hold her in your arms like a newborn baby should be held. I am very impatient as I want her home with me NOW!!! I am so afraid to go in the NICU to find out bad news that she is not doing well or she may not even make it. The rollercoaster is the hardest part. One day she could be absolutely fine and the next day she could be fighting for her life. It is so hard playing this waiting game and balancing act of medicine. The events that have happened over the past 14 weeks with ALL the ups and downs of her "not going to survive" to "Holy crap, she made it" has really played a toll on me. You just wonder and ask God everyday, "What is the purpose of this and how is going insane going to help me help others." It has gotten to a point where I have been getting angry over the littliest things. I am sure that there are a lot of NICU Dads out there that try to act strong for their family, but are breaking down inside. Please, either tell me to suck it up or what I can do to help make things easier on my end.

I wish you all a wonderful weekend and God Bless!

The Freemans

7/18/08 - So Peaceful and Comfy

Aimee, the kids and I went up to see Kayleigh earlier in the day today because we had an appointment on that side of town. Kayleigh was sound asleep and doing really well. Her alarm was going off, but only because her sats were high and her oxygen needed to be lowered. That is an alarm I hope to hear more often. Since she had a good evening and was doing good all day, they increased her feeds from 1ml to 2ml. There was a new nurse today and she was telling us that Kayleigh had a bad night, but we dug a little deeper to find out she only had 3 desats all night long. I don't think she knows Kayleigh all that well because that is really good for her to only have 3 desats.

Kayleigh also had a chest x-ray this morning and it showed that the fluid in her lungs looked much less than usual, so take a deep breath of fresh air because that is some delightful news. Let's just hope that it stays that way so she can grow and get to the weight she needs to be to have the surgery. When Aimee went back to see her, she noticed her eyes and nose were a little black and blue. The nurse said they were going to test her hemoglobin to see if maybe she needs more blood. If that is the case, she will get her fourth blood transfusion.

I just called up to get more news. She is doing really well and resting. Her weight went down a little, but the lasix medication they were giving her is going to cause her to fluctuate a little. She weighed in at 642grams which is 1pound 6.7 oz. She did have a couple poops today too so she is tolerating the increased feeds. They are going to test her blood gases soon to see if they can wein her even lower on the oxygen. Over all, she is having a really good day today.

Also, take a look over to the right toolbar as today I helped Brandon and Allyson create their own blogs so they would feel a part of everything that is going on. I can't imagine how tough it is for them to see their little sister in the isolette and have to wait for a long time before they can play dress up or wrestle. (Especially the wrestling) Brandon and Allyson have been so wonderful when we go in to the NICU and they ask very good questions. It is a fear that we may not be able to give them the attention during this hard and stressful time. Today I was able to spend a lot of time giving them their "own" (.com) They were just thrilled to see they are on the internet, but now they have their own website. Please do me a huge huge favor and post a comment praising them on a how wonderful big brother/big sister they are being for Kayleigh. It would mean a lot for Aimee and I, but I am sure they will think it is the coolest thing in the world. Plus they have checked constantly every five minutes to see if they get new visitors. ha-ha.

Thank you all so much and God Bless!!!

The Freemans

7/17/08 DADDY GETS KANGAROO TIME!!!!

First of all, I am in heaven after the day I had today. I finally got to hold my daughter to my chest for the first time ever. It was by far the most wonderful feeling in the world to hold Kayleigh in my arms and feel her move around. She was so comfortable laying with me that her sats were higher than she was in the incubator. That made me feel so amazing because my worst fear was for her to start desating and me be too afraid to hold her the next go around. It went perfect, so I was completely happy and I can't wait to hold her again. I actually got in a grumpy mood when I left because I didn't want to put her back :( ha-ha.

Well, I would not have gotten the chance to hold Kayleigh if she had a bad day, so I am pleased to tell you all that her day was wonderful. She had only had a few minor desats all day long. Her blood pressure was off a little, so they brought in the Dopamine to start that again. By the time they set it up and had it ready, she leveled her blood pressure back out and was fine for the rest of the day. The Dopamine was aso used to help Kayleigh pee, but she had a very wet diaper all day today. They think that the Lasix (diuretic used to extract fluid from the lungs) had something to do with that too. Out of all the times I changed her diaper, she never had a poopy diaper. But when Aimee changed her diaper today for the first time ever, Kayleigh had the biggest poop she has ever had recorded. I was shocked when I saw it because I didn't realize she could poop that much. I was curious on how the seeds got in there. (Sorry for being gross) ha-ha. Since they started her back on her feeds yesterday, if everything continues to go well, they will increase them tomorrow. At the beginning, Kayleigh was diagnosed with a thyroid issue and today they didn't feel like it was an issue anymore and took her off the medication (Synthroid).

They didn't weigh her this evening because they did a blood gas at 8:00 and were moving her around more than they wanted to. They will weigh her around 2:00AM so I will know tomorrow for sure if she has grown anymore. Aimee and I think that her hands and feet seem to be growing alot because they look much bigger. Her hair is growing in more too and Aimee is convinced it is brown and not blonde. It did look darker today than yesterday, so maybe. They also measure Kayleigh every Monday. This past Monday they measured her at 12 inches long. She has grown 1.5 inches in the past 3 weeks. Now she just needs to put on some meat.

Please pray for Wade and Ferris as one of their little girls (Adleigh) is going to have heart surgery tomorrow to close her PDA. Both of their girls have been through a lot and are continuing to fight through every obstacle put in front of them. God is certainly working miracles in their life and we need to continue to pray for them. God Bless The Joye Family!!!

The Freemans

7/16/08 - Quick update

Hello everyone,

I just wanted to give you a quick update so no one kills me for not posting at all. Brandon, Allyson, my parents and I went to the beach in South Carolina today to meet up with some of my California relatives. It was a very needed one day getaway. Aimee had to stay behind for an appointment and was truly missed. Since we all came back looking like lobsters, I don't think she was too upset for not going. I am hurting badly as I feel the sunburn in my finger tips while I type!!!

So, I am going to make this quick and let you know that today was a good day. Kayleigh had a few desats, but was able to rest peacefully all day today. Her blood gases came back good and she gained a little weight. She weighed in at 613 grams which is 1 pound 5.6 ounces. That is up from yesterday so we are very happy to see that.

Other than that, she is doing well. I can't wait to go see her tomorrow. Even though I had a well needed break, I miss her deeply. Thank you all for your prayers and emails. I got quite a few today and enjoyed reading them tonight. It just makes me feel so awesome to see all those comments. I truly appreciate every single one of them.

God Bless!!!

The Freemans

7/15/08 - Look at my hair!!!

Wow, Kayleigh's hair is really starting to come in more and more each day. I still think it's blonde. ha-ha

Today was a better today than the past couple days so I have to be excited about that. They discontinued the Dopamine that she was on because her blood pressure regulated and she peed a lot through the night. Here is the great news of today. The x-ray that they took of her showed that her heart was not as enlarged as it was yesterday and there was less fluid build up in her lungs. They have increased her IV fluids and started to feed her again. That is amazing news and I hope that it continues to progress.

The rough part of today was that she was showing a lot of signs of irritability. She was on the vent and desating like crazy, but she wasn't desating like normal. She would drop down to around 50 and then it would take her forever to get back up. They had to bag her quite a few times today which means they had to pump air into her lungs manually. They just couldn't put their finger on why she was struggling. When Aimee and I were there, they decided to reposition her and remove her vent tube. The Doctor that was watching thought he would like to try and see how she did on the Bubble CPAP again. I was not happy because I knew she would definitely not get any rest then. The Doctor figured she was just trying to refuse the vent all together. So within an hour, she was put on the Bubble CPAP, then changed to the Conventional CPAP and then back to the Vent because she was not accepting any of them and really doing poor with her breathing. It was very stressful to watch, so Aimee and I left to go down to the cafeteria with Wade and Ferris to eat dinner. It is so awesome to have friends in the NICU like them to either vent to or rejoice in good news. When we returned to see her knocked out, it was an awesome feeling. Her vitals looked good and she was sound asleep. They gave her some pain medicine to help her rest and gain her energy back. Poor girl was so wiped out, that he vent was completely breathing for her when normally she over rides it.

It is going to take some time to get used to this stress, but I am glad that we have all of our support. Aimee and I have been getting wonderful emails from so many people. To hear all the people who are out there following Kayleigh's story and praying for her just overwhelms me with joy. I love to check my computer to see who has posted to say hello and the miracle stories they share. We thank you so much because your emails and prayers are what gets us through the days. This is the hardest thing that Aimee and I have ever had to deal with in our lives. Thank you all for being amazing to us. You are all truly a blessing from God.

The Freemans

7/14/08 - Happy 3 Weeks Old

Okay, I am going to give you all the bad news quickly and then tell you some good news because we are going to stay positive and not let the bad news effect our attitudes. Sorry I didn't take a picture today because I wanted Kayleigh to rest and I was beyond terrified to turn on her light or use the camera flash for my pleasure.

When Aimee and I arrived to the NICU today, the nurse practitioner came in to talk with us. She had went over everything we already knew (which I posted yesterday) and then a couple other pieces of information. She said that Kayleigh's heart appears to be a little more enlarged today that it did yesterday. Beyond her lungs starting to fill up with fluid, her right lung has some sacs that are not expanding, which she explained could be collapsing from working too hard when fatigued. The NP said, both the lung and heart issues could be signs of congestive heart failure. That is not good!!! Along with other bad news, they are doing blood cultures because they think she may have an infection of some sort. That means they can not feed her until that comes back clear because it could cause the infection to worsen. So no food = no growth.

Now the good news! They have started the medicine to help with her heart, so we will know if it is working within 24-48 hours. They have also started the medicine to remove the fluid from her lungs. So lets pray that both medicines will help take care of these issues. The other day, her weight was 550 grams and it jumped to 635 grams yesterday, which seemed a little weird, but they did give her a blood transfusion. Today her weight was 580 grams which is still up from the other day, so we are moving in the right direction. 580 grams is 1 pound 4.5 ounces. Kayleigh had only three desat episode all day today and it was during her cares. I know she is on the vent and that helps keep the desats from happening quite as much, but I am so happy to hear she was able to rest her body today. Earlier today, the nurse had told us her oxygen was increased to 50% due to her blood gasses coming back irregular, but since then they have decreased it down to 38%. Hopefully that continues to decrease because her settings have normally been around room air (21%) the whole time. They also changed her vent settings from 18 to 15, which I think means it is the pressure forcing air into her lungs. All I do know is that she said it was good, so if it is good then I am happy! ha-ha. For the most part, she seems to be doing better since early this morning. That to me sounds like improvement.

On another good note, Aimee has finally covered the bottom of her container with the milk she has produced. That was a goal ever since she got her first drop to make it into the bottle. We know that Kayleigh needs mommy's milk more than anything, so we are so happy to see that she is producing enough to help. It seems like more and more is coming in each day. Bless her sore boobies though, she has been pumping every 2-3 hours on the dot all the way through the night. She is such an awesome Mommy!!!

Our prayer request:

I asked the NP today if this was a common situation amongst preemies and this was her answer, "Yes, it is with a (normal size) preemies, but it is even tougher on (micro) preemies like Kayleigh because they are just so small" Size is against us and if we can't feed her, she isn't going to grow. So please pray that she will not have anything come between her and her food anymore, so she can grow and grow quick. Right now, we are dealing with a balancing act of events. Although, if she doesn't grow quick enough, we could very well lose her. We are not going to let that happen!!! We all need to pray and pray the same thing, so God will work in her life. Kayleigh is a fighter and we all know that from her past hurdles, but we need her to fight now more than ever before. Ask God to give her enough strength to make it through yet another battle.

Thank you all so much!

The Freemans

7/13/08 - Our New Goals

Here we go! The echocardiogram came back today to clarify one thing, Kayleigh will need surgery. The (VSD), hole in her heart will need to be closed because medication will not be able to get the job done. So as of right now, they have increased her feeds to deliver more nutrients (Carbs, Fats and Proteins) without increasing level of food they give her. So basically, she is going to have a high calorie diet packed in a small dose.

The Lasix will be used to extract the fluid out of her lungs until she is big enough to add the pulmonary band which will take over that job. Our goal is to get to 1000 grams (2lbs 3.3oz) so the Doctors can do surgey to add the pulmonary band. Once that goal is met, our next goal is to make it to 2000 grams (4lbs 6.5oz) so they can open the same incision to repair the hold (VSD) in her heart. A nurse said that we should expect an increase of 25 grams a day. If she hits that mark everyday, our first surgery will be around 18 days from now.

To help Kayleigh rest and grow as quickly as possible, they switched her over to the ventilator this morning. She was so peaceful today that we just wished they would have left her on this the whole time. The problem is, the vent is more likely to cause long term damage to the brain and respiratory system, maybe others. So, the Doctors felt it would be in the best interest of Kayleigh to take that chance, rather than not grow quick enough and die. I completely agree with that because I have heard of many preemies being on the vent for a long time and nothing major happen. We will just put that in God's hands and let him take charge.

So right now, we are playing the waiting game and praying for growth. The stars have to align for everything to work out just perfect, but God has performed many miracles and we know he will continue to watch over Kayleigh through this new battle. Kayleigh justs wants to make things interesting, doesn't she??? She has already racked up three years of time outs for all the other crap she has pulled.

Please keep us in your prayers as growth is what we need more than anything. Man, I feel like we have been fighting this battle with her size from the beginning. We hoped she would make it to a certain size to be viable when she was inside Mommy and now that she is out, she has to be a certain size to stay alive. Aimee and I were slaves to the ultrasound measurements for 12 weeks and now we are slaves to the incubator scale. I am sure 8:00 everynight will be the highlight of our day because that is when they will weigh her. Watch, my luck she is going to be a linebacker on the high school football team. ha-ha.

Thank you all for your prayers, gifts and love.

The Freemans

7/12/08 - In Need of Prayers!

Kayleigh started her day off with many desats back to back which caused the nurse to call in some respiratory specialists to see if they could figure out what may be causing her to have so much trouble. The only suggestion they had was to change her position to see if they would help Kayleigh. It did for a little bit, but later in the afternoon she was back at it again.

The crazy thing that is shocking the Doctors is that Kayleigh is not having the normal type of desat where her oxygen slowly drops from 95-70-50, and then the heart rate drops shortly beind that. Kayleigh is dropping quickly from 95-50-10. At times her oxygen is dropping in to the single digits within a matter of seconds and then the heart starts to drop within 30 seconds after that. Sometimes the heart doesn't even drop at all, so that is what is concerning the Doctors. She is quickly bouncing back which is good, but sometimes she doesn't and needs help.

They did some tests today which possibly confirms that these severe desats are caused by the VSD (hole between chambers) in Kayleigh's heart. The hole is a moderate size, which moderate can mean large for Kayleigh because her heart is so small to begin with. They are doing an Echocardiogram tomorrow to get some more answers, but they noticed that the VSD is causing the lungs to take on fluid due to the heart overworking itself. The fluid is then causing Kayleigh to have trouble breathing and the VSD is causing an issue in transfering a sufficient amount of oxygen to the body. Basically, they both don't go hand in hand and is causing the severe desats.

The good news is that the hole will not get any bigger and can close on its own. Also good news is that they can do heart surgery to close the hole if the medicine does not work. The surgery will both limit the fluid in the lungs and help the heart distribute more oxygen to the body. The bad news that if she needs the surgery to close it, she is no where near the size to have the surgery performed right now. They are needing her to be atleast 4.5 lbs. That is over three times the size she is now (She weighed in at 550 which is 1 pound, 3.4 ounces)

The new medicine they started today is called Lasix. It is a diuretic that will help extract the fluid from her lungs. The other medicine that they will start Monday is called Digoxin and that is to help the heart boost its performance so she can get more oxygenated blood flow through the body. If the medicine does not work like they want it to, they may have to do surgery to insert a pulmonary band to stop the fluid from going in to the lungs.

So right now we are in a game of waiting. I am anxious to hear what the Echocargiogram is going to tell us tomorrow. I will be sure to let you all know something as soon as I find out and can post.

***For those who know about this or have been through this situation, please post and let us know your experience.

***For all the others, please post (in the comment section below) a prayer for Kayleigh that this issue will be quickly resolved by the hands of God and that Kayleigh will quickly grow out of this severe desaturation phase.

Thank you everyone and God Bless!!!

The Freemans

7/11/08 - One Step Back

Did you think Kayleigh was going to let us have three good days in a row? NOPE!! Just look at that picture - she is pondering what kind of trouble she is going to cause next. If you have followed her story from the beginning, you will very well know that Kayleigh doesn't let us rejoice in good news for long.

This morning, Kayleigh decided to have numerous desats which eventually ended with her being put on a bubble CPAP, which to me looks like a normal CPAP (with a head gear) but with Bubbles. Actually the bubbles are there to help Kayleigh remember to breath as it is suppose to startle her brain receptors. Don't ask me how it does that though. Even with the new Bubble CPAP, she was still having desats, so they drew some blood to see if she had an infection and is sick. Those results came back negative, thank goodness. As of right now, she is still having desats but if bringing herself out of them quickly. They don't seem too concerned about it and decided to increase her caffeine to see if that will help.

Please pray that they will find out what is the root of the problem and fix it quickly so Kayleigh can rest easy and focus on her growth. Speaking of growth, they increased her food and she is currently weighing 566 grams (1.397 pounds), so we are making improvements there. Kayleigh had three poops marked down today, so we are extremely happy to see the food is working its way through. The nurse also said her stomach is soft and her color is looking great, meaning her digestive system is working normal.

Let's hope that she gets a lot of rest tonight and tomorrow becomes a much better day. We need your prayers everyday. We are positive that your prayers are the only reason she has made it this far. Let's all pray that she will get control of her breathing so she can move on and focus on her growth.

God Bless,

The Freemans

Aimee worked on a project for everyone to see ALL of the photos we have taken of Kayleigh and put it to music. Please click on the photo link below to see it :)

Kayleigh

7/11/08 - Sorry for not posting :-o

Okay, I got yelled at by Aimee and I think I scared my parents to death because I didn't post yesterday. I did however comlpete chapters 5 and 6 of the book I am writing about our experience, which will then help other familes in the same situation keep hope alive. I was up until 6 this morning working on it so I am sorry for not posting.

We went up to visit Kayleigh yesterday afternoon for a short amount of time. We had the kids with us and on those days, it is harder to keep them patient while we are in the NICU.

Kayleigh was desatting more yesterday than she has been over the past couple days. They think it was due to the inrease in food, but aren't totally sure. They tried increasing her flow, increasing her oxygen, decreasing her food, but nothing seemed to work. She is bringing her self out of the plunges, so that means for something good.

She slept the whole time we were there and looked so peaceful all wrapped up. Kayleigh also has a new neighbor who is practically sharing the same isolette because they are packed in that little room. They said the other baby shouldn't be there long. I am sorry if I sound like a complainer, but I guess I am already getting over protective of my little girl. ha-ha.

On the oher hand, Mommy is not too happy either!!! She was diagnosed with slight Hyperthyroidism and was placed on a medicine to control it. When Aimee was pregnant, she lost 10 pounds, but was never sick. She then gained 5 pounds back before Kayleigh arrived. Since being on the new medicine they gave her, she has gained 7 pounds in the past two weeks. We have been going back and forth with the Doctors to see what is going on. We wanted to know if this Hyperthyroidism was only a problem when she was pregnant and the hormones have caused the inbalance. We cut back on the medicine for now and will continue to watch to see what happens. Aimee is not thrilled about the weight gain at all and we don't need her pulling out more hair because of the stress. I would still love her if she was big and bald though. :)

I will update tonight after we get back from the hospital. Please keep your prayers coming and thank you to those for sending the gifts. Thank you notes and pictures will soon be sent out. We love you all!!!

The Freemans

7/9/08 - Home Makeover!!!

Today was yet another great day for Kayleigh. We are just completely pumped up for her right now. I know they said to expect some highs and lows, but we just hope to continue to see more highs than lows.

Aimee and I took the kids up to see Kayleigh again today and they seemed to be more excited this time around. I think it was because Kayleigh was up looking around with her eyes wide open. Brandon was able to rub her head to feel how soft and smooth her head is with all that peach fuzz growing in.

The nurses said that she had a couple desats this afternoon, but when they turned up her flow from 3 to 4, she stopped having them. The great thing about it, is that the oxygen is not the problem. I think she is close to or at 21%, which is what we breath. The problem she has is that her lungs are so small, they are not strong enough to suck in the air so it is easier for her to forget and not breath sometimes when she is sleeping. Since they turn up the flow, it practically pushes the air in to her lungs for her.

They also increased her feedings and she is tolerating it very well. That means a lot to me because I want her to grow from the tiny little peanut that she is. She did increase some weight though from dropping a couple ounces over the past two days. She is currently weighing 531 grams (1.273 lbs). We are really excited about her progress so far.

Aimee and I put together a sign and some photos to decorate her incubator with. In the picture above, you can see some favorite photos that we chose in the background. So when we are not there, she can still see us. I put a lot of work in to that collage with her name on it. I guess I will settle for nothing less than perfect when it comes to my precious daughter. If you can't make out the photos on the collage, Brandon and Allyson are the ones up top with Aimee and I, but down below are Georgia (Our Weiner Dog), Myrtle (Our Turtle) and Sam (Our Border Collie Mix). They all can't wait for Kayleigh to come home and play with them.

Kayleigh, we all love you very much and we can't wait to bring you home. We will pray and pray and pray for God to take care of you and all the other babies. You are certainly a miracle and proof that God is in control.

Thanks everyone for all your prayers!

The Freemans

7/8/08 - Kangaroo Care!!!

But, Not for me :(

Since Aimee is having a hard time producing milk, we figured it would be the best thing for Aimee told hold Kayleigh today instead of me. I know she is working really hard pumping every 2 - 3 hours through the night and if this is one of the best things for Aimee and Kayleigh, then I am completely fine giving up my spot to help my girls out.

I am glad I was able to get some good video of the Kangaroo care so you can see Miss Kayleigh in action. Turn up the volume and you can hear her whimper when the nurse brings her over to Aimee and lays her down. She was just so precious lying on Aimee today and she did really well for over 30 minutes with out a desat. Although, it got to a point where she started having troubles though, so we had to put her back in. I just think she was getting tired and cranky. That pink beanie is just so adorable on her.

Overall, she had another really good day and they have increased her food intake. Aimee was a able to feed her through the tube today. She is now receiving one "cc" every 3 hours, instead of 6 hours. Since they've increased her food, we are hoping to see more poops and maybe a little bit of weight gain.

I got a really good idea about doing size comparisons so when she gets older, she can see how small she really was. If there are any other good ideas/tips that we should do, please let me know.

Other than that, enjoy our video and keep praying for our Kayleigh :)

The Freemans

7/7/08 - Just Laying Around

First of all, I am sorry for not posting last night. I had a really good reason for it. Aimee and I had taped and watched the finale of The Bachelorette. We were so mad that Jesse won, he is such as dork. ha-ha!

Anyways, check out that first photo of Kayleigh. It looks like she is laying out at the beach. That is so darn cute! Also, the last photo really shows the hair that is coming in. Aimee and I are still back and forth as to whether it is blond or brown hair that we see. The photos looks more brown, but there is a good mixture of both in person.

She had a really good day yesterday. Not a whole lot happened so that is great. She did desat a couple times, but was able to recover well on her own. She was also a little whiney, which her little cry makes you feel all sappy inside. I got to change her diaper again and take her temperature. I was supose to get to Kangaroo Care her yesterday, but Aimee and I think the nurse was too nervous to do it. When we sprung it on her, she was hesitant to say yes. She took about an hour to do another baby's vitals (probably hoping we would leave) and then decided she didn't like where her temparature was to be able to do it. That was okay though. I would rather have someone more confident because I am going to be the nervous one. We spoke to the nurse on the phone this morning and she said that I could do it today, so I am stoked!!! I will have some good photos tonight for you. Woo hoo! I get to hold my little girl to my chest for the first time today :)

Aimee was able to squeeze out a CC of milk yesterday and that is the most she has been able to produce so far. It is not a lot, but it sure is progress! Keep working hard beautiful!!!

Thank you again for all of those who have sent gifts. We really appreciate it so very much!!!

God Bless!

The Freemans

7/6/08 - What A Beautiful Day!

I can hear that song playing in my mind over and over after the excitement Aimee and I just had. We went up to the NICU for a couple hours and it was a blast. Normally we would be spending all our time watching Kayleigh sleep, but not today. She was wide awake and the most active we have seen her yet. As you can see in the photos, she is off the vent and back on the nasal cannula. They took her off the vent and put her on the CPAP for an hour this morning. They noticed she was doing even too well to be on the CPAP, so they moved her to the nasa cannula. So instead of one step forward, we took two steps forward. Let's hope that she can keep it up!

One of my favotire moments today besides getting to hold her hand for a little bit, was when we gave her a pacifier and she was actually sucking on it as best as possible. The miniature pacifier was still a little too big for her, but she would suck on the tip of it before it just fell out of her mouth. We tried to prop her hand up there to hold it in, but most of the time we would have to hold it for her. So the best part was holding it in for her and gently rubbing her head. I was in love!!! Aimee said she knows that look I was giving Kayleigh because it is the same "love" look I give her.

Other than that, Kayleigh is doing great. When she would have her apnea bout, she would pick herself back up really quick without any help. That is what we want her to do and she is doing great today with that. I was able to change her diaper and wipe her pen tip size poop off her bung-holio. The photo of her crossing her legs is a splitting image of her Papa "G", which is Gary Freeman, grandpa or also known as my Dad. When he is on the phone with anyone in his chair, you will see him cross his legs like that. I can also start to see a little of Grandma in her too. The only reason I say that is because she is the only one in our immediate family that has blonde hair and it looks like Kayleigh's hair is a little blonde too (Although it may be peach fuzz). No offense to any blondes out there, but Aimee has the burnette hair dye ready for when she gets out of the NICU. ha-ha!

Aimee and I went to Elevation Church for the first time today. It was so wonderful. We were able to see Wade lead in worship, which I must say he does a fantastic job!!! God has certainly blessed him with talent as well as the rest of the band. We bought a cd and listened to it all the way to the NICU and back home. At church, Wade was able to tell his story about his two little preemie twins, Liana and Adleigh to all the members and what an amazing story it is. I ask of everyone to please pray for them too. Wade and Ferris are great people and we are blessed to have met them because I think we found a new church home :)

Today was a beautiful day! God Bless our little miracle and the way HE works in our lives.

The Freemans

7/5/08 - A New Best Friend

Kayleigh's new best friend is a webkin named Brittany. A few months back, Aimee and I went to get some Webkins for Allyson and Brandon. We had planned at some point to get Kayleigh her first stuffed animal, but we didn't realize we were going to come across the perfect best friend that day. Everyone has their first stuffed animal or doll that is their best friend. Mine was Ellie, a little grey elephant that I still have to this day. Aimee had her first best friend which was a doll named Amie. For those who don't know Brittany. She was a Cocker Spaniel that my family had for more than half of my life. She was our best friend and she unfortunately passed away last year. Kayleigh will never get a chance to personally meet one of the most special friends in my life, but she will befriend a splitting image stuffed animal of her. The cute thing is that Brittany is a little bit bigger than Kayleigh is right now. We were not able to put Brittany in the isolette for safety reasons, so she is sitting right outside waiting for the day they can cuddle together.

Kayleigh had a good day today. Since being put on the vent, her apnea bouts have lessened. She only had a couple desats all day long which is greeeeaaaat! She dropped 7 grams from yesterday, but they started feeding her today to see how she does with that. They are feeding her one (cc) every six hours. She did have a moderate poop this morning, so we are hoping that will continue since they started to feed her. I would hate to see her stomach back up again. Some tests were done and they realized Kayleigh has a slight thyroid problem and they have already started her on medication. The Resident that was in the delivery room with us came in to talk with us today. She seemed really positive and felt really great with Kayleigh's stats. I can tell when talking with her that she seems very impressed with the whole scenario. That is a good feeling!

Tomorrow, Aimee and I are heading to church to see Wade and Ferris Joye. They are the proud parents of Liana and Adleigh. Liana is Kayleigh's neighbor in the NICU, so we will be hanging out with the Joye's for quite some time while residing there. Their church is having a special about them and their experience through this roller coaster ride of life. We are really looking forward to it and being there for them as we know exactly what they are going through. You can read their story by clicking on their link on our main page.

Thank you all for your prayers and keep praying for more days like today.

The Freemans