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These were a couple photos that I took over the last two days. Don't you just love her ear muffs?!?! First and foremost, I am loving Twitter so you all can get the updates on the blog and Facebook on a regular basis. I will still continue to update the blog every couple days, but mainly to recap and show photos. If you haven't joined up, go to the right tool bar to follow the daily updates by reading along or getting text messages to your phone This has been an awesome start to a brand new year. The year 2008 is over with and hopefully so is all the drama that came with it. Kayleigh continues to surprise us all with her strength as she tackles these issues like a champ. Just the other day, she was having another hypertensive episode that was so intense, her heart rate was dropping because it could not keep up with the massive amounts of pressure coming from her lungs. Falling deeper and deeper in to trouble caused the doctors cancel the jg-tube procedure, but we all know who re...

Since I posted this so close to the last update, please check that one in case you missed it. The answer to my problem has been found. As I have been updating this blog with cool gadgets, Twitter is the answer to my blog and Facebook updates. I can text message a quick update throughout the day to keep people up to date on what is going on with Kayleigh, so I don't have to post every single night and you don't have to wait for it to come! Also, with the limited amount of time we have in a day, I can focus that hour or so that I am posting on work or quality time with Aimee. I will continue to post updates of the most important things in case people missed it on Twitter or Facebook, as I still need these posts to be included in the book that I am writing about our journey. So, throughout the day, you can go to the side tool bar of the blog (over to the right) and follow the updates that I text from my phone. You can also, click on "follow me on Twitter" and I am guessi...

Kayleigh is making some progress after her recent hypertensive episode which cancelled her jg-tube procedure. She is finally coming down from high pressure settings and 100% oxygen on the vent. The x-ray showed some improvement with the left side of the lung, but it still looks nasty in there. They are going to give her a few doses of Lasix to dry and get some of that out of there. I guess this was Kayleigh's way of telling us she was not ready for the procedure, I just wish she wouldn't scare the mess out of us in the process. Please continue to pray that she will recover back to where she was before, and then some so we can move forward with this procedure (When she is ready) and start repairing the damage that has already been done to her lungs. Kayleigh continues to amaze us all and we can only hope and pray she has enough fight in her to grow out of this illness. Also, please pray for Stellan. He has come down with RSV and you can read about his battle on MckMama's si...

I guess Kayleigh has her own way of showing us that this procedure was not supposed to happen. Late last night, before Aimee and I went to bed, Kayleigh had an hypertensive episode. She dropped her sats fairly low, but never spiraled out of control like she normally does. Kayleigh must be getting used to some of the sedation medication because they had to bump up her dosage and switch over to Morphine to really get her to relax. She slowly recovered back to normal. Around 6:30 in the morning, we got a phone call that she had another episode, but this time she spiraled out of control and needed to be paralyzed along with more sedation medication. During this episode, she was not responding like normal and she is currently on a much higher pressure control setting at 100% oxygen. The x-ray came back showing her left lung is collapsing. They have started some treatments to fix it and hopefully Kayleigh can turn things around. We are not sure if this is pneumonia coming back or her elevate...

Since Kayleigh weighed in at 6.4 pounds yesterday, one of Kayleigh's friends mentioned doing a comparison with her (Webkin) bestfriend, "Brittany." To learn more about who Brittany is and how she is such a special friend to Kayleigh, go back to the post on 7/5/08. As you can tell, Kayleigh is much bigger now. Hopefully it won't take her six more months to grow six more pounds. Let's pray for weight gain!!! (When are you going to pray for weight gain ever again??Ha-Ha!) The jg-tube procedure for tomorrow is set in stone! That is if Kayleigh continues to stay at the same prognosis as she was tonight. Aimee and I are to be there a couple hours before so we can walk her down to the operating room. She will be under sedation and possibly paralyzed before she goes down so we do not risk the chance of her having a hypertensive episode. Making sure she was as relaxed as possible was our biggest concern about this whole procedure, but after mentioning it to everyone we com...

Kayleigh wanted me to tell everyone "Thank you." I'm serious, she turned towards me tonight and said, "Hi Daddy! Please tell all those wonderful people out there that I am so thankful to be here and it is because of their prayers that I am alive." Ya know, If Kayleigh really could talk and say what's on her mind. I think she would be saying those exact words. Maybe, she would tell us how crappy it is to have one tube in one nose, another tube in the other and an even bigger tube down her throat. Do you realize how big of a baby I would act if I had to put up with that. I complain when I have to get one IV and she has several. What do you think she would be saying if you could hear her talk??? Sweet Kayleigh is doing good today. I feel she has not looked as good as she did today in a long time. Her color was good and she was satting great for several hours that I spent watching her sleep. She did wake up a couple times when I let go of her hand and looked aro...

Merry Christmas from our family to yours. I sure hope everyone had as much fun with their family as we did. We woke up early this morning and opened up presents here at our house and shortly after that, we went to Aimee's mom's house to celebrate with the whole family. "Thank you so much Nama for doing Christmas at your house this year as it was one less thing we had to stress out about." After that was all said and done, we went to spend Christmas time with sweet Kayleigh. She didn't want to party like everyone else, instead she just slept and slept some more. She is having a much better day since yesterday morning's events. I wasn't able to get any good photos because she was face down, drooling and snotting like a champ! "That's my girl" They have had to suction her out quite a bit today, but it is good that she is getting it all out of her system. The last x-ray showed the lungs are clearing up very well. The right side has actually looki...

Gabriella and everyone else, Thank you so much for making us aware there are some not so nice people out there who are bashing us and saying rude things. As God would want us to turn our cheeks, we still need to band together and watch out for everyone's safety. We would never do anything to hurt, cheat or steal from anyone as I am sure you all know that. People have sent us bad comments saying we are stealing people's hard earned money, which is downright ridiculous. I had such a hard time posting our troubles to be as real as I can be to everyone who cares with the intent of finding a direction to take my family out of financial strain, which in no way did I ask people for money as it was suggested to do a trust fund or paypal donation. People even asked if they could do something for our kids beyond what was given to us financially and all we did was accept their generosity by telling them our kids Christmas wishes. We apologize if that offends anyone. I figured if people wa...

This photo is just too adorable!!! Kayleigh had a rough start to her day, but she has been wonderful ever since and I think I know why. At first we thought Kayleigh was irritated from the gastrointestinal doctor coming by to get a feel for things in her tummy. She didn't like him poking around and she had one of her horrible episodes. She dropped her sats and spiraled out of control to the point where it took quite some time to get her sats back up to normal. One of our primary nurses told Kayleigh that Santa wasn't going to come if she was a bad girl today, so she straightened up for the rest of the day. I think it had to do something with the massive poop she had when changed her diaper. I mean, Good Gracious!!! She left me a huuuuge nasty present for me and I have been "mostly" good all year. I thought I have seen big poops from her before, but this took two diapers to clean up. Whew!!! :) Needless to say, she felt so much better after I changed her and she was qui...

Well, I brought my camera to take some photos of Kayleigh tonight, but I forgot the insert card that saves all the photos on it. Oops :( And you know what??? Kayleigh's swelling has gone down a lot, so she isn't so puffy anymore. I will be sure not to forget it tomorrow. Kayleigh is doing great today for her 6th month birthday! While they are waiting for her pneumonia to go away and recover a little bit more, they decided to insert a tube directly in to Kayleigh nose and all the way in to her intestines. It passes her stomach, so this will reduce the chances of reflux/micro-aspirates as much as possible for right now. They started her on feeds tonight (1ml/hr of plain breast milk continuously) so she can focus on growth. They don't want to risk her having a bad outcome from a small procedure(jg-tube). If you haven't noticed, Kayleigh can handle all the tough hurdles like open heart surgery, but she has so much trouble with smaller things like a urinary tract infection o...

Today was a very quiet day for Kayleigh. There was not a whole lot that went on and she slept for most of the day. The only thing they worked on today was lowering her settings, so the high oxygen settings do not do any more damage to the lung tissue than they already have. She is down to the low 40's on the amount of oxygen she is getting, but her other settings (pressure) are still high. If we continue to progress some each day, she will hopefully be off the vent in a week or so. We have not set a time or date as to when they will be doing the JG tube. The x-rays have shown improvement with her pneumonia day after day, so we are so happy to see that clearing up. She got another IV today to receive a blood transfusion due to low hemoglobin count. They had to put it in her head because all the other veins in her arms were taken and her legs have not been very plentiful with good sights. Other than that, it was very quiet and we LOVE quiet!!! When Kayleigh has a good day, we all hav...

Okay Everyone. Here we go!!! Aimee and I both sat down with our cardiologist's nurse practitioner (CNP) tonight and we may have a game plan set in place to get Kayleigh's pulmonary hypertension under control and possibly a one way ticket home. Prayers are the only way through this wild adventure we are about to take, but I am more confident than ever that Kayleigh will succeed. Each task at hand must be completed successfully before the next process can begin and this is not going to be a walk in the park. I spoke last night a little bit about the JG tube that they may be putting in Kayleigh's intestines to help with her reflux/micro-aspirates. Tonight, I felt like our CNP has unlocked the door to Kayleigh's only path home. Thank God for such intelligence. Since Kayleigh has been on two of the best medications to treat her pulmonary hypertension (O2/NO2), it is evident that it is working, but something else is keeping Kayleigh from getting those pressures down. Look at ...