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It has been confirmed that next week, Kayleigh will be getting a trach. The doctors do not feel at this time the Nissen/G-tube or JG-tube will be needed. She will continue to have the OG-tube, which is the one in her nose, to feed her. Their plans are to let Kayleigh recover from the trach procedure, feed her from he OG-tube for a little while and then try to bottle feed her. The ENT doctor does not feel that reflux is a major issue for Kayleigh after looking at her airways with the bronchoscopy that was performed last week. Normally there will be irritation or damage to the airways caused by the acids aspirated from Kayleigh's stomach, but that was not the case. Although, if there are signs of reflux or if Kayleigh has troubles taking a bottle, they will then decide to perform one of the procedures to help with the problem (i.e. Nissen/G-tube or JG-tube). So, that leads me to say...If Kayleigh flies through all of this like a champ, she will be that much closer to coming home. Thi...

We are still waiting to hear back the final verdict as to whether Kayleigh is going to need a trach, but all the votes are point in to the direction of "yes" and we are all prepared if that is the case. After learning more about the trach and reading up on all the great information you all have sent us, it comforts me in knowing that this is the very best thing for her. She will not only be able to breath better, but she will be able to focus on other aspects that go along with early childhood development. We are more than happy to say that the trach will speed up her process of coming home because she would not be able to come home with the ET-tube down her throat. Yes, she still needs to tackle the reflux issue, but they may do either the g-tube/nissen or the jg-tube at the same time as the trach. After that, the doctors need to decide whether or not they want to send her home on the Flolan for her pulmonary hypertension or try and wean her off of it. There is not much else...

There was nothing new for an update today (which no news is great news), but I wanted to share a few photos with everyone. ***Don't forget to submit your baby photos ( HERE ) for the Leelou's Baby Shower Contest on February 9th!!!*** (I wonder if I send in my baby photo, if she'll notice) Come on! I was a cute baby with a massive bowl cut ;) God Bless,

Is this not the face of Kayleigh saying "But Daddy Pleeeeaaasse?" "I still see you Daddy" ".......................................................................................... " I think I spent too much time trying to come up with something on that last one, but I failed each time. I need your help! What would your quote say? Update: Kayleigh is doing great. She is on low vent settings and it just having a good ole time over the past few days. We have not had any episodes, major desats or bad spells. She may get a little grumpy when she poops in her pants, but don't we all! ( I mean, they all!) Kayleigh's doctors are going to meet on Monday to discuss whether or not they feel she needs to get a tracheotomy. Both bronchial tubes are collapsing, but nothing exterior is causing them to collapse. Plus, the amount of pressure being used to keep them open is next to none, so no one can really explain what is wrong. The best guess is that her bronch...

I have a surprise coming soon for everyone. I am not sure when it is coming, so you will have to keep checking back often to find out what it is. I bet you want to know, but I just can't spoil it. Sorry :( Don't you just hate that feeling inside your stomach when someone knows something secretive that you don't. I just love surprises. (hee-hee) I am cruel, aren't I? Don't go to far, you might miss it! (Disclaimer - It is not about Kayleigh's prognosis, so I don't want to upset anyone.) God Bless EVERYONE, Adam :)

I must say that I have never been so happy in my life to hear a world renown doctor made a small mistake. After the bronchoscopy procedure, we were told that Kayleigh was too small for a trach and she certainly could not be placed on an ET vent tube for a long time. One, the tube would cause scarring and more issues. Two, when she grows up, she is going to pull it out all the time. And three, she can never go home on it as we are not trained to put it back in and there will be no x-ray at our house to make sure it is in the right place. Anyhow, this wrongful mistake was because the doctor thought Kayleigh was on high pressure settings, which in fact she is on very low settings. This means she could be on a normal trach as there will not be much pressure to open up those bronchial tubes. The trach could be placed in and adjusted as Kayleigh grows older and she could grow out of this bronchiamalacia that she is having in both the right and left bronchial tubes. After our doctor took a da...

Thank you all for being patient with me while I updated my Twitter while being at the hospital, trying to not break down with all the crazy news. I went in to this procedure with full confidence that Kayleigh would not need a trach and that she would probably just come off the vent with no troubles during the procedure. Well, it didn't happen nearly the way I wanted it to. In fact, it was worse. I am going to try to explain it as best as I can from what I know so far. As you enter the esophagus, there were two swollen bubble like processes that are called "tongues." Once the vent tube was removed, these tongues would swell up until it closed the full opening of her airway. They called this Malacia, which with a trach, medication and time, it would fix itself. Unfortunately, this was the first and smallest issue the doctor came across. After proceeding down the throat, he came to where the airways divides and leads to the right and left lung down an airway called the bronc...

I just wanted to write a quick post tonight to ask a question to everyone. Given our limited funds through these tough times, we are very interested in finding someone who would spice up our blog at a very inexpensive cost. Does anyone know anyone who can help me???? We are so ready to have blog makeover :) God Bless, The Freemans :)

I must say, sitting in a room with a neonatologist, cardiologist, gastroenterologist, pulmonologist, all of their nurse practitioners, a social worker, discharge nurse, and our primary nurse with all eyes on us is quite a stressful situation. There is a lot of brain power going on that you can feel the temperature in the 10x15 room just heat up every minute that passes. A fear of mine is talking in front of a group, but I guess it was worse when it was a group of VERY intelligent people. Once we got going, it wasn't too bad to speak up. Overall, the meeting went really well! It started off with our neonantologist going over all the wonderful memories that we have had in the past 206 days. Not to mention, I am still trying to forget the 3 months of hell just prior to ever meeting any of these professionals before Kayleigh was born. After we recapped all of our ups and downs, each specialist went over what they felt was best for Kayleigh's care from here on out so we can ALL be o...

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...