First of all, thank you everyone who sent in letters. I know there are more coming from some of you, but I need a lot more to completely fill up one years worth of bed time stories :)
I'd hate to see Kayleigh's Caregivers get more letters than Kayleigh does herself. (Maybe a little guilt will work, ha-ha) Please email me your letter to: Adam@TeamFreemanProperties.com
Okay, Leelous baby shower is coming up in 7 short days, so if you haven't entered your Baby in the photo contest she is doing, please do. Submit them here: Leeloublogs@aol.com
If you haven't heard about the shower, it is going to be awesome. Click on the button to the left to learn more. She is benefiting Mia and Kayleigh, and they are going to have games and give out prizes. Let's make this the biggest virtual baby shower ever!
Last, but certainly not least, Kayleigh is doing great today. They had thought her central line on her chest was getting infected, but there are no signs of that today. Other than that, there have been no changes and she is looking awesome!
I watched an awesome movie today that I highly recommend everyone watching. It is not a real high budget film, but it delivers an awesome message about glorifying God and that ANYTHING is possible through Him. Go watch it! It is called "Facing the Giants"
Thank you all again for your letters and if you don't know what I am talking about, read the previous post "Opening Up"
God Bless,
1/30/09 - Opening Up
Tonight brings a little different post. (Kayleigh is doing great by the way)
I want to share with everyone how Kayleigh's story has touched me along with how you all have touched me.
For those who know me, only see skin deep. For those who love me, see below the surface only to an extent. Aimee, she sees everything.
I am a young man, raised by two loving parents who live their lives with their hearts on their sleeves. I have learned to love and I have learned to forgive as our God has learned to love and forgive me for the things I have done in my life. I am not perfect, but my life is driven by perfection. I, like so many of you strive to be the best person I can be for so many, but ever so often fall short.
I am a work in progress. A man who wants nothing more than to make everyone feel welcome in my heart no matter who you are or what you have done. I have never been the perfect example of the way God wants us to be, but I know that no one else in this world walks without regrets. Living a perfect Godly life is nearly impossible, but realizing your imperfections makes you perfect.
I am a man who struggled with addiction. A man who has battled deep depressions. A man who has fallen off his horse and a man who has suffered many defeats. But, I am also a man who has beaten the devil. A man who has gotten back on his feet. A man who learns from his past and makes a difference in his future.
Life's lessons are what shape a person to be the best they can be only if they take what they have learned and fight for what they want. I have been hurt, betrayed, lied to, cheated on, kicked down and stomped on. But, with God on my side, I have realized there is no better teammate to pick you up, dust you off, hold your hand and walk beside you with your head held high than God himself.
Most of you know our troubles because a lot of you helped us get through the holidays (and you know who I am talking about). I have learned so much from every single one of you. You have blessed our family with love and support, and you don't even know us but from the words that I express from typing on a computer to share the miracle God has blessed me with. That right there is a true example of the way God wants us to be towards each other. I am forever in your debt. Praise God!
Kayleigh has also taught me a lot about life. Through her toughest battles, she has never given up. She has never been defeated and she continues to beat all odds. I on the other hand have lost hope, lost faith and lost all self control. But by her exhilarating triumphs, I grew new hope, new faith and new self control. Maybe Gods plan was to show me that no matter how dark a corner can be, there is always light shining from his presence. There is always hope no matter how grim things may seem.
From the emails I have received, I see that Kayleigh has touched so many of your hearts, she has strengthened your faith and she has given you hope in your own journey. I can only pray that you will carry on in your own lives, the faith, hope and love that Kayleigh has brought to our attention. There is no mistake and everything happens for a reason, so take what you have learned from this journey and apply it to your life. I honestly feel that if you share a quarter of the love you have given us but with others, there will be millions of happy and blessed people.
You all are an inspiration to our family and you have taught us so much. I have a new found strength in helping others in need and being there for someone in their darkest hour. Your love has made me a better man and for that I am so thankful.
So,tomorrow I will walk with a smile. I will say hello to everyone I pass. I will open the door for others. I will say thank you twice. I will kiss my wife the moment I wake up and I will hug my family so much tighter.
Please do me a huge favor because Kayleigh needs to know more than ever just how much your lives have been touched by her story so she will continue to live her life helping others feel the same exact way. I want nothing more than for me to read her a bed time story (your letters), everynight for ONE FULL YEAR for as long as she can stand it :) That means, I need 365 letters with hearts spilled out on paper, telling us how your life has been effected and how much Kayleigh is loved. If there are more than 365, then that just means that Kayleigh gets to stay up later. (ha-ha!) E-mail me your letters to: Adam@TeamFreemanProperties.com
Let it pour!
God Bless,
I want to share with everyone how Kayleigh's story has touched me along with how you all have touched me.
For those who know me, only see skin deep. For those who love me, see below the surface only to an extent. Aimee, she sees everything.
I am a young man, raised by two loving parents who live their lives with their hearts on their sleeves. I have learned to love and I have learned to forgive as our God has learned to love and forgive me for the things I have done in my life. I am not perfect, but my life is driven by perfection. I, like so many of you strive to be the best person I can be for so many, but ever so often fall short.
I am a work in progress. A man who wants nothing more than to make everyone feel welcome in my heart no matter who you are or what you have done. I have never been the perfect example of the way God wants us to be, but I know that no one else in this world walks without regrets. Living a perfect Godly life is nearly impossible, but realizing your imperfections makes you perfect.
I am a man who struggled with addiction. A man who has battled deep depressions. A man who has fallen off his horse and a man who has suffered many defeats. But, I am also a man who has beaten the devil. A man who has gotten back on his feet. A man who learns from his past and makes a difference in his future.
Life's lessons are what shape a person to be the best they can be only if they take what they have learned and fight for what they want. I have been hurt, betrayed, lied to, cheated on, kicked down and stomped on. But, with God on my side, I have realized there is no better teammate to pick you up, dust you off, hold your hand and walk beside you with your head held high than God himself.
Most of you know our troubles because a lot of you helped us get through the holidays (and you know who I am talking about). I have learned so much from every single one of you. You have blessed our family with love and support, and you don't even know us but from the words that I express from typing on a computer to share the miracle God has blessed me with. That right there is a true example of the way God wants us to be towards each other. I am forever in your debt. Praise God!
Kayleigh has also taught me a lot about life. Through her toughest battles, she has never given up. She has never been defeated and she continues to beat all odds. I on the other hand have lost hope, lost faith and lost all self control. But by her exhilarating triumphs, I grew new hope, new faith and new self control. Maybe Gods plan was to show me that no matter how dark a corner can be, there is always light shining from his presence. There is always hope no matter how grim things may seem.
From the emails I have received, I see that Kayleigh has touched so many of your hearts, she has strengthened your faith and she has given you hope in your own journey. I can only pray that you will carry on in your own lives, the faith, hope and love that Kayleigh has brought to our attention. There is no mistake and everything happens for a reason, so take what you have learned from this journey and apply it to your life. I honestly feel that if you share a quarter of the love you have given us but with others, there will be millions of happy and blessed people.
You all are an inspiration to our family and you have taught us so much. I have a new found strength in helping others in need and being there for someone in their darkest hour. Your love has made me a better man and for that I am so thankful.
So,tomorrow I will walk with a smile. I will say hello to everyone I pass. I will open the door for others. I will say thank you twice. I will kiss my wife the moment I wake up and I will hug my family so much tighter.
Please do me a huge favor because Kayleigh needs to know more than ever just how much your lives have been touched by her story so she will continue to live her life helping others feel the same exact way. I want nothing more than for me to read her a bed time story (your letters), everynight for ONE FULL YEAR for as long as she can stand it :) That means, I need 365 letters with hearts spilled out on paper, telling us how your life has been effected and how much Kayleigh is loved. If there are more than 365, then that just means that Kayleigh gets to stay up later. (ha-ha!) E-mail me your letters to: Adam@TeamFreemanProperties.com
Let it pour!
God Bless,
1/28/09 - Confirmed
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. This may take a month or two, but at least there is a possible end in sight. We just need to pray that nothing goes wrong and nothing else pops up in the mean time.
Do you realize how amazing that day is going to be? Man, I will be the happiest Dad in the world!
She is doing great right now. She weighed in last night at 6 pounds 4 ounces, which was a major jump from the night before (6lbs even), but the protein she was on might have had something to do with that. They did however stop giving her the protein after she pooped 10 times yesterday, but if she has trouble with her weight gain from here on out, they will increase her caloric intake a little. She is also very close to coming off her pain medication too, which will stop her "eye wondering" issue and allow her to focus on certain objects.
Several people were interested in seeing Kayleigh holding my ring again, but when I tried, she was wide awake and would not keep her hand still. I will have to try it another time. That was a great idea to show how much she has changed over the past 7 months. It will definitely make for a great post, so keep your eyes out for that one soon.
I really do appreciate all the ideas and questions every has. If I some how miss answering one, I apologize. Just ask me again and I will either email you personally or answer it in a post. All of you, (except for a few rude anonymous posts), have treated us like family and have practically considered Kayleigh as one of your own. If there is any ideas you would like to offer or questions you would like to ask, please do. If you don't want to post your comments for everyone to see, you are more than welcome to contact me personally at Adam@TeamFreemanProperties.com.
Please keep those prayers coming!
God Bless,
1/27/09 - Still Waiting
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 to do from there, but we said that before so pray that nothing pops out of nowhere. We will have in-home care provided for us, which will be the biggest adjustment, but we try to look at the positives and do what is best for Kayleigh. "Hey, at least I get off of night duty for a little bit longer."
Kayleigh seems to amaze us everyday. When we go in to spend time with her at her bedside, we always find ourselves lost in thought. Looking at this blessing from God that has beaten so many odds is such a great feeling. It takes me back to when I would lay next to Aimee and put our little fetal dopplar on her belly so we can listen to Kayleigh's heartbeat. Every night for 10 weeks straight, we prayed to hear the pitter-patter just one more day. We would just lay there and smile at each other with such strength and hope that Kayleigh will make it through this. Look at her now! She makes my heart melt every single time I look at her. I am the proudest Daddy in the whole wide world.
Thank you ALL who have supported us through this.
PS. Don't forget to send in your photos for the baby shower contest. Only 11 days left!!! Submit them at Leeloublogs@aol.com. If you don't know what I am talking about, check out the previous post or go to LeeLou's Baby Shower to get involved.
God Bless,
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 to do from there, but we said that before so pray that nothing pops out of nowhere. We will have in-home care provided for us, which will be the biggest adjustment, but we try to look at the positives and do what is best for Kayleigh. "Hey, at least I get off of night duty for a little bit longer."
Kayleigh seems to amaze us everyday. When we go in to spend time with her at her bedside, we always find ourselves lost in thought. Looking at this blessing from God that has beaten so many odds is such a great feeling. It takes me back to when I would lay next to Aimee and put our little fetal dopplar on her belly so we can listen to Kayleigh's heartbeat. Every night for 10 weeks straight, we prayed to hear the pitter-patter just one more day. We would just lay there and smile at each other with such strength and hope that Kayleigh will make it through this. Look at her now! She makes my heart melt every single time I look at her. I am the proudest Daddy in the whole wide world.
Thank you ALL who have supported us through this.
PS. Don't forget to send in your photos for the baby shower contest. Only 11 days left!!! Submit them at Leeloublogs@aol.com. If you don't know what I am talking about, check out the previous post or go to LeeLou's Baby Shower to get involved.
God Bless,
1/24/09 - Picture Perfect
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,
1/23/08 - LOOK WHO'S TALKING!!!
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 bronchials are beyond weak, but what is puzzling is they were never weak before all of this. We can't turn back if we do a trach now and waiting a couple weeks for this to heal may not work, which will then cause her to need the trach then. The longer we wait also increases the risk of scarring from the vent tube, so that's not good either. I am sure what ever decision made will be the best one for Kayleigh. We just need to ALL pray that God leads the doctors to the best path for Kayleigh.
I wasn't going to post tonight, but I couldn't wait to start off the new look with a brand new post. I am so happy that you all like the new look. I felt like a kid with a new toy, I was so excited that I nearly pee'd my pants (Okay, not really) - but I was so excited to finally see it!!!
Leelou has done such an amazing job helping me with Kayleigh's new blog look and I am so thankful and blessed by her generosity. She took time out of her "pregnant" and busy schedule to help our family. She is 8 months pregnant to be exact and still looking for a boy's name (not Dane because it is one syllable and her husband wants a two syllable name.) Anyhow, I think we should all bombard her with two syllable, baby boy name ideas! What do you think? :)
Not only was Leelou so great to us, she is promoting a baby shower filled with contests and prizes in honor of Mia and Kayleigh. When she announced this on her blog yesterday, we were so excited that we wanted to tell every single one of you so you can join in. So, grab your ice cream, pickles and mouse, and come join in the fun contests to hopefully win some cool prizes on Feb. 9th.
One of the contests is a baby photo contest, so when you send in your baby name ideas to Leelou, you can attach your baby photos for the contest as well. (Hey, Knock out Two birds with One stone) Below...I am posting her recent post from her site so you all can take the button and share it with everyone you know.
Let's make this one of the biggest virtual baby showers known to man! How fun is that going to be!?!?!?!
Leelou Blog Baby Shower
Leelou is almost 8 months pregnant and wants to have a party!
We'll give you all the fun of going to a real baby shower, without the melted candy bars in diapers...ick!!
Starting February 9th, there will be loads of contests and giveaways so make sure you click on the link button below and get one for your own blog!
We are going to be benefiting two sweet babies that have spent months and months in the NICU.
Until the party starts you can click below to learn their amazing stories.
Baby Kayleigh
Baby Mia
Also...we are having a cutest baby photo contest. So if you want to enter, send us pictures of your kiddos now! There will be 2 categories:
One for babies 0-2 years old and another category for toddlers 2-4 years old.
The winners will receive some AMAZING prizes!!!
So email us a picture of your cute kid along with:
names, ages and location (you don't have to be super specific, just a first name and state will do) to http://mailto:LeelouBlogs@aol.com/ by February 7th!!!
We will post the 5 finalists on the day of the baby shower and leave them up all week for you to vote on them.
Good luck and check back on Feb. 9th!!!
Thank you everyone and God Bless,
Surprise!!! Do You Like The New Look???
This new design was completed by LeeLou and Coley, so if you are interested in them spicing up your blog, click on her button below to see their awesome work.
God Bless,
The Freemans :)
God Bless,
The Freemans :)
GUESS WHAT????
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 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 :)
1/21/09 - Praying for Good News!!!
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 day to speak with a well known doctor out of Cincinnati (Dr. Cotton), which is someone many of you suggested, he came to the conclusion that Kayleigh's problem could be outside the bronchial area. The next step was to do an MRA, which is very similar to an MRI, but it will look more in depth at the blood vessels that surround the bronchial tubes. This is to see if those blood vessels are swelling and pressing against the bronchial tubes, closing them when there is no pressure to keep them open.
A quick call back was made from Cincinnati deciding rather than doing the MRA, but to put a dye through the veins and look at the blood vessels with a CT-scan. This is a little less invasive because Kayleigh doesn't have to be heavily sedated like she would for the MRA.
--- intermission ---
We just got a call back from the nurse and Kayleigh is done with the CT-Scan and had no issues at all. The procedure took less than an hour, but a few hours to prep. She has to be NPO (not fed) for a couple hours before they did the scan. She is currently back in her section and satting wonderfully as if nothing ever happened. I am much happier to see that Kayleigh is tolerating these procedures much better than in the past. Her oxygen is sitting around 35% and she is awake and not crabby at all.
We are supposed to hear something, but probably not tonight. I will be sure to Twitter it (Tweet) tomorrow as soon as I hear something. I am on pins and needles for sure (I know you all are too), praying they found something minor that can be easily fixed without having to put in a trach. Please everyone say a prayer before you go to bed for our little girl and pray this hurdle will soon be jumped and we can keep moving forward to our goal of coming home and never look back.
If you have not grabbed our button from the right toolbar, please do. Add it to your blog, websites, Facebook and whatever else you can add it to. Even though Kayleigh is not on her death bed like she was a couple weeks ago, we can never stop praying each day that she makes it through each battle. The more prayers the better, so the more people who see Kayleigh's button will be intrigued to know this precious little girl who has touched the hearts of so many. Copy/paste the (html) in the box below the photo and add it your site and share it with the world so we can help bring people closer to God, to their family, and to give them hope in their own journey.
God Bless,
The Freemans :)
1/19/09 - Post Bronchoscopy Procedure
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 bronchial tubes. There was not enough air pressure from Kayleigh's breathing to open either of these bronchial tubes. The left one was shut tighter than the right. Kayleigh would be able to blow air out, but not suck air in which would cause her to suffocate. The air pressure from the vent was pushing the air through this tightened airway and then Kayleigh could breath it out with her own pressure on the exhale.
So, now we have identified a problem and we know that pressure pushed in to her lungs will allow those bronchial tubes to open to allow air in (Great!). We also have learned that this problem "may" heal itself with growth and time and that amount of time could be years.(I can live with that!) But the problem now is deciding which device to use to help push that air in (Hmmm).
Being that this issue is going to take years for Kayleigh to grow out of, a vent ET tube is not meant for long term use as it could cause other damage in the throat. Also, when Kayleigh starts grabbing at things and realizes what is gagging her, she will extubate herself on a regular basis. Not to mention, she will never be able to go home on the vent because it takes x-rays to make sure the vent tube is inserted properly.
The second option is a trach, which I think is going to be the route they will take. The problem is, the trach needs to withstand the pressure being pushed in the lungs by the vent/respirator and only a certain trach can do this. This type of trach (which the respiratory therapist mentioned) doesn't come in Kayleigh's size. Kayleigh's tube right now is a 3.5 and the trach size is for a 4.5, and it could be a year or so before Kayleigh can get to that size due to how small she is right now. So, are we supposed to stay on the vent until she is big enough? Maybe, but we won't get those answers until Wednesday.
The doctor mentioned there is a stint they could put in the bronchial tubes, but the stint can not be placed in the right one because of where the airway opening is that goes to the lung. Plus, the doctor mentioned that doing this procedure has a high failure rate. That didn't give me a nice feeling in my stomach, but before I could even react to that, the "World Renown" specialist said he has never seen an issue like this before, and in such bad shape (on top of that). He wants to speak with his associate who he has worked with for many years, but the way he seemed to not give me the conclusive answers I was looking for, it almost made me feel that he was dodging my questions maybe because he was baffled with such a unique situation. As a professional in my field, I know when a situation is beyond my thought process when I have to say, "Hey, I just don't have any answers right now, but I need to think about it and consult with me team."
I don't know about you, but that scares me! Although, I look at the whole picture and this must be another thing Kayleigh is going to just shock the world with. She is going to make this such a situation where no one is going to understand how she overcame yet another obstacle that was supposed to be too big for her. She has done it several times before and she is going to do it again. I am just amazed at how many things one child can deal with in a short amount of time. This has got to be a world record of some sort.
All we can do is continue to hope and pray that we get the answers we need to prepare Kayleigh to overcome this problem. We know she is one tough cookie and she can handle anything placed in her path. God is certainly in control here and we need Him to bless our child with another miracle to show people the power of prayer and trusting in God is what will bring Kayleigh through this.
Thank you so much for those who sent in photos. The bracelets should be arriving soon or have already arrived, so I look forward to seeing your photos for the scrap book. Thank you everyone who has offered to help us with the blog makeover. We have picked a company who has offered to do it for free and is also going to help us do some other really cool ideas. I am looking forward to sharing our new blog look and new ideas soon.
Thank you all for being there for us through the good times and the bad. We could not have made it through this without your support. You give us great questions to ask the physicians and your prayers are unbelievable. God Bless every single one of you out there and thank you for sharing in our journey with us. Sorry Kayleigh is giving you all high blood pressure too :)
God Bless,
The Freemans :)
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 bronchial tubes. There was not enough air pressure from Kayleigh's breathing to open either of these bronchial tubes. The left one was shut tighter than the right. Kayleigh would be able to blow air out, but not suck air in which would cause her to suffocate. The air pressure from the vent was pushing the air through this tightened airway and then Kayleigh could breath it out with her own pressure on the exhale.
So, now we have identified a problem and we know that pressure pushed in to her lungs will allow those bronchial tubes to open to allow air in (Great!). We also have learned that this problem "may" heal itself with growth and time and that amount of time could be years.(I can live with that!) But the problem now is deciding which device to use to help push that air in (Hmmm).
Being that this issue is going to take years for Kayleigh to grow out of, a vent ET tube is not meant for long term use as it could cause other damage in the throat. Also, when Kayleigh starts grabbing at things and realizes what is gagging her, she will extubate herself on a regular basis. Not to mention, she will never be able to go home on the vent because it takes x-rays to make sure the vent tube is inserted properly.
The second option is a trach, which I think is going to be the route they will take. The problem is, the trach needs to withstand the pressure being pushed in the lungs by the vent/respirator and only a certain trach can do this. This type of trach (which the respiratory therapist mentioned) doesn't come in Kayleigh's size. Kayleigh's tube right now is a 3.5 and the trach size is for a 4.5, and it could be a year or so before Kayleigh can get to that size due to how small she is right now. So, are we supposed to stay on the vent until she is big enough? Maybe, but we won't get those answers until Wednesday.
The doctor mentioned there is a stint they could put in the bronchial tubes, but the stint can not be placed in the right one because of where the airway opening is that goes to the lung. Plus, the doctor mentioned that doing this procedure has a high failure rate. That didn't give me a nice feeling in my stomach, but before I could even react to that, the "World Renown" specialist said he has never seen an issue like this before, and in such bad shape (on top of that). He wants to speak with his associate who he has worked with for many years, but the way he seemed to not give me the conclusive answers I was looking for, it almost made me feel that he was dodging my questions maybe because he was baffled with such a unique situation. As a professional in my field, I know when a situation is beyond my thought process when I have to say, "Hey, I just don't have any answers right now, but I need to think about it and consult with me team."
I don't know about you, but that scares me! Although, I look at the whole picture and this must be another thing Kayleigh is going to just shock the world with. She is going to make this such a situation where no one is going to understand how she overcame yet another obstacle that was supposed to be too big for her. She has done it several times before and she is going to do it again. I am just amazed at how many things one child can deal with in a short amount of time. This has got to be a world record of some sort.
All we can do is continue to hope and pray that we get the answers we need to prepare Kayleigh to overcome this problem. We know she is one tough cookie and she can handle anything placed in her path. God is certainly in control here and we need Him to bless our child with another miracle to show people the power of prayer and trusting in God is what will bring Kayleigh through this.
Thank you so much for those who sent in photos. The bracelets should be arriving soon or have already arrived, so I look forward to seeing your photos for the scrap book. Thank you everyone who has offered to help us with the blog makeover. We have picked a company who has offered to do it for free and is also going to help us do some other really cool ideas. I am looking forward to sharing our new blog look and new ideas soon.
Thank you all for being there for us through the good times and the bad. We could not have made it through this without your support. You give us great questions to ask the physicians and your prayers are unbelievable. God Bless every single one of you out there and thank you for sharing in our journey with us. Sorry Kayleigh is giving you all high blood pressure too :)
God Bless,
The Freemans :)
1/19/09 - Website Help!!!
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 :)
We are so ready to have blog makeover :)
God Bless,
The Freemans :)
1/15/09 - Pass Your Test
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 on the same page and tackle each problem one at a time.
Hopefully I am not confusing as I explain the order of events. I have mentioned them previously, but each procedure that is about to happen is going to get Kayleigh better and home as soon as possible. We are still looking at quite a few months in the hospital if everything goes as planned, but with the help from all of you out there who are going to pray over her through each hurdle is going to help make this a successful journey from here on out.
First things first, we need to tackle the airway issues. On Monday, Dr. Parsons who is a renown ear nose and throat specialist is taking Kayleigh down to surgery to do a more in depth bronchoscopy (with a video recorder) to figure out what is going on with Kayleigh and why her airways are closing up after every extubation attempt. After he is through and if he finds something he can fix right then and there, he will. If not, the doctors will put their heads together and either go the route of a tracheotomy to help heal whatever this long term problem is, or find another way to fix it. We are still unknown of the problem, but the renown specialist thinks the problem may be cysts which have formed on the vocal chords, not allowing air to pass through when the vent tube is extubated. We can only pray that this is the problem because the doctor can zap those cysts and fix the problem during his procedure on Monday.
After the airway issue has been taken care of, they are going to tackle the feeding issue. The reflux that is being aspirated in to the lungs are tearing up the lung tissue and for Kayleigh to have a chance to grow out of this pulmonary hypertension issue, she needs to grow back healthy lung tissue. The more aspirates she may have, the more damage those lungs take and the longer it takes to heal (if at all). Some lung tissue may not grow back and could cause long term damage or death as Kayleigh will not be able to supply her growing body with the amount of oxygen it needs when the body outgrows the lungs.
So, in order to fix the aspirate issues, we need to determine if in fact the aspirates are causing most of the lung damage. The Pepcin test we "thought" came back positive for micro aspirates, was not the case and we are still waiting for those results. We were told the results came back positive, but oddly those results were lost and can not be confirmed. There was an apology given and the subject changed before we could ask any more questions. So needless to say, they are doing another test and we should know something soon. If the test comes back positive, then the Nissen surgery and G-tube will be performed. The Nissen surgery is where they tack up the stomach at a vertical angle, which will not allow reflux to occur. The g-tube will feed directly in to Kayleigh's stomach by a tube inserted in to Kayleigh's abdomen.
Right now, Kayleigh is at 3ppm on her Nitric Oxide and is no longer being given her steroids (Hydrocordizone) to reduce inflammation or the Fentanyl which is the second to last of her pain medication. She is still on max dose of Versaed. That leaves her Viagra and her Flolan, which she can come home on both of those. Her feeds are up to 13mls/hr continuously, which are at her max feeds and she is tolerating every bit of it. She has put some weight back on, which she is now right back at 6 pounds. They are no longer administering antibiotics, so any signs of infection/pneumonia are completely gone. She is on the lowest setting possible on the vent, but just seems to have these last hurdles to jump, that is if she doesn't have any setbacks with the upcoming procedures. She is such a strong little girl that we have no doubt she will make it through.
Now, let's talk about CHOP (Children's Hospital of Philadelphia). Okay, that's it! (That was quick). Actually, since we are consulting CHOP on all decisions and Kayleigh is showing a lot of signs of improvement, something is being done correctly and there is no need to uproot our family to get the same treatment up there. Although, if there is something that pops up along the way that CHOP can offer that we do not and that Kayleigh needs, then we will be gone in a heartbeat. Let's pray things don't go in that direction. However, we do have awesome family and several people who offered assistance if we must go. Thank you everyone for being so awesome and making us feel comfortable if we need to head to Philly.
So now this leads to our prayer requests and with all this mess, what do we pray for first??? Well, let's take one step at a time and pray that the bronchoscopy on Monday shows simple signs of a simple problem and can be simply fixed. Then we will decide where to go from there. I will be sure to update you all the rest of the week and weekend on Twitter, which sorry I didn't tweet a lot these past couple days. I promise to get better with that because I know how I would be if I was in your shoes waiting for an update. (Nerve Wrecking Huh?)
Since my last mistake with the "Sir Spamalot" baby photo contest, people advised me to submit a photo to the Regis & Kelly contest going on. I sent in our main photo with the ring around Kayleigh's wrist and hopefully they will allow people to vote soon, but keep an eye out for when they open the voting. I am guessing that is how it will work, but one way or another, we shouldn't get bombarded with unwanted spam mail this time. I am glad I cancelled that quick! Also, if you missed my tweet, I finally got the bracelets boxed up and ready to send out. I will be sending them tomorrow morning after I take the kiddos to school. Thank you for your patience on that, but I am excited for everyone who gets to show them off and share Kayleigh's story with others.
That leads me to end my post tonight with a piece of advice. Day in and day out, our faith is being tested and day in and day out, we pass! No matter how hard our battle is our how bad we want to blow up on the first person who aggravates us, we remember who is testing us and why He's testing us.
We were not given this battle with Kayleigh because we are being punished or because we we did something bad in our past, it is because we are strong and we can handle it. It is because God wants you to see that no matter how bad our situation is, we can endure the pain and turn it into something good for the sake of you learning from it only to make a difference in your own life.
We are being tested far beyond what most people see on the surface, but we are handling every detail with the sole purpose of glorifying God. You all don't see those details, but Aimee, myself and God do, and how we react to those smaller details is how we can pass each test. There is no doubt that we have and we will continue to pass each test given to us! First, because we are competitive and we don't like to lose, but because we love every single one of you who have been following Kayleigh's journey with us and we want nothing more than for you to trust in God through your own trials. He is not punishing any of us, but He is only testing how we react. Do something good with something bad! Pass your test!
God Bless,
The Freemans :)
The Freemans :)
1/11/09 - One Tough Cookie!!!
Can you tell Kayleigh doesn’t like to lay on her back anymore? Actually, she was fine for about 30 minutes, but soon wanted to be put back on her tummy. She is so picky because she used to never like being on her tummy. I guess she likes to keep us on our toes, which goes along with everything else she does or doesn’t do. Her file is going to be named the “Kayleigh’s Way” file and her WHOLE file is going to be a “case study” for other doctors to be cautious about. It will read, “Handle with care, unpredictable baby syndrome”
Speaking of care, we are meeting Thursday with ALL the neonantologists, nurse practitioners, cardiologists, respiratory therapists, pulmonologists, gastrointologists, and nurses who are involved with Kayleigh’s care. It seems communication amongst some of them have been lost or confusing, so we are going to clear up this game of telephone really quick. It is tough when there are so many people involved and so many decisions have to be made. Since we are dealing with the pulmonary hypertension, respiratory difficulties, micro-aspirations, possibility of going to CHOP, and normal everyday care, there is bound to be some confusion here and there amongst everyone involved.
Speaking of issues, everyone knows that I don’t like to complain about the treatment we are getting because it has been practically flawless. But….and there’s a “but” in here! I received a piece of paper yesterday that explains the vaccines that Kayleigh just got. I was reading one of those sheets just after signing the approval form and it states that the vaccine is to prevent pneumonia as pneumonia is one of the deadliest infection for newborns up to five years old. So, I kept reading and this vaccine was supposed to be administered at 2 months, 4 months, and 6 months. Hmmmm!!! I think we have a problem here, don’t you??? After reading this, we asked the nurse practitioner why this hasn’t been done at the scheduled periods and the response I got was that Kayleigh wasn’t well enough. Before I about went off the deep end, I quickly reminded her that Kayleigh almost went home twice, so if she was well enough to go home, then she should have gotten these vaccines. Needless to say, the NP didn’t say anything else but that they would look in to it a little further. Our primary nurse looked all through our file (twice) and there were no records of any vaccines. It makes you wonder though, if Kayleigh would have had this vaccine, would she have been so susceptible to the pneumonia that just about took her life?
Anyhow, I’m sorry to get you all as fired up as I am but there is no room for mistakes with “our” precious Kayleigh and I need to get to the bottom of that.
Moving on…As of right now, Kayleigh’s Pepcin test that was sent off to the labs has come back confirming there ARE micro aspirates in her lungs, which are causing damage to the lung tissue. To fix this problem, they need to perform the Nissen surgery, where the doctors tack up Kayleigh’s stomach to eliminate the chance for aspirations. Our stomachs are horizontal at some places, causing acids to build up and when refluxed, they are aspirated in to the lungs. When the doctors tack the stomach up, it makes the whole stomach vertical which will then prove the law of gravity by allowing everything that enters the stomach to continue on its expected path.
While they perform this surgery under anesthesia, they will also insert a G-tube, which is a feeding tube that feeds directly to the stomach instead of having a tube down the nose anymore. This will also allow the airways to heal quicker without having another tube in there. That leads to the next surgery which is the tracheotomy. If the time that Kayleigh is on the vent for the next week or two while they perform the Nissen/ G-tube surgery to allow time for Kayleigh’s airways to recover and she can be extubated successfully, then she will not need the tracheotomy. Let’s hope and pray that she doesn’t have to get that. I heard it isn’t too bad, but after talking with the nurse about the possibility of full time home care, that will be quite an adjustment. Either way, we would make it work though!
On a really great note! Kayleigh is down to 6ppm on her Nitric Oxide, which is the lowest she has been in a long time. That goes to prove her pressures are still reactive and she could still grow out of this hypertension if she stays healthy and grow. With the doctors fearing her pressures were fixed, we were afraid she would never come off the vent and take a turn for the worse, but ALL of your prayers have worked again! Can you believe this amazing work God has done on Kayleigh? It is so evident that He is hearing all of our prayers and continuing to show us how powerful He is. Man!!! I am just so pumped up about her progress that I feel every ounce of excitement in my stomach. It feels as if I am going to burst from the inside out and I want to scream until my voice becomes horse.
Doing God’s will together!
I took the initiative to provide some website/emails of some great possibilities to spread Kayleigh’s story to reach families out there who need to hear it. Whether it is to bring them closer to God, bring their family’s closer together or just give them hope in their own journey’s. Here are a list of local news, local newspaper and some national television shows (links) that I could find for everyone to email. I have written them already, but these producers need to here it from you all. They need to know about Kayleigh and how she has touched your lives, plus it wouldn’t hurt to gain some more prayer warriors. So, if you write your quick message, copy and paste it to each link and send it, we may be able to share our story to millions and what blessing that would be. Make sure you include the blog site so they can be captivated in to learning more. Thank you all so much for your help and let’s do God’s will together. Amen!!!
Speaking of care, we are meeting Thursday with ALL the neonantologists, nurse practitioners, cardiologists, respiratory therapists, pulmonologists, gastrointologists, and nurses who are involved with Kayleigh’s care. It seems communication amongst some of them have been lost or confusing, so we are going to clear up this game of telephone really quick. It is tough when there are so many people involved and so many decisions have to be made. Since we are dealing with the pulmonary hypertension, respiratory difficulties, micro-aspirations, possibility of going to CHOP, and normal everyday care, there is bound to be some confusion here and there amongst everyone involved.
Speaking of issues, everyone knows that I don’t like to complain about the treatment we are getting because it has been practically flawless. But….and there’s a “but” in here! I received a piece of paper yesterday that explains the vaccines that Kayleigh just got. I was reading one of those sheets just after signing the approval form and it states that the vaccine is to prevent pneumonia as pneumonia is one of the deadliest infection for newborns up to five years old. So, I kept reading and this vaccine was supposed to be administered at 2 months, 4 months, and 6 months. Hmmmm!!! I think we have a problem here, don’t you??? After reading this, we asked the nurse practitioner why this hasn’t been done at the scheduled periods and the response I got was that Kayleigh wasn’t well enough. Before I about went off the deep end, I quickly reminded her that Kayleigh almost went home twice, so if she was well enough to go home, then she should have gotten these vaccines. Needless to say, the NP didn’t say anything else but that they would look in to it a little further. Our primary nurse looked all through our file (twice) and there were no records of any vaccines. It makes you wonder though, if Kayleigh would have had this vaccine, would she have been so susceptible to the pneumonia that just about took her life?
Anyhow, I’m sorry to get you all as fired up as I am but there is no room for mistakes with “our” precious Kayleigh and I need to get to the bottom of that.
Moving on…As of right now, Kayleigh’s Pepcin test that was sent off to the labs has come back confirming there ARE micro aspirates in her lungs, which are causing damage to the lung tissue. To fix this problem, they need to perform the Nissen surgery, where the doctors tack up Kayleigh’s stomach to eliminate the chance for aspirations. Our stomachs are horizontal at some places, causing acids to build up and when refluxed, they are aspirated in to the lungs. When the doctors tack the stomach up, it makes the whole stomach vertical which will then prove the law of gravity by allowing everything that enters the stomach to continue on its expected path.
While they perform this surgery under anesthesia, they will also insert a G-tube, which is a feeding tube that feeds directly to the stomach instead of having a tube down the nose anymore. This will also allow the airways to heal quicker without having another tube in there. That leads to the next surgery which is the tracheotomy. If the time that Kayleigh is on the vent for the next week or two while they perform the Nissen/ G-tube surgery to allow time for Kayleigh’s airways to recover and she can be extubated successfully, then she will not need the tracheotomy. Let’s hope and pray that she doesn’t have to get that. I heard it isn’t too bad, but after talking with the nurse about the possibility of full time home care, that will be quite an adjustment. Either way, we would make it work though!
On a really great note! Kayleigh is down to 6ppm on her Nitric Oxide, which is the lowest she has been in a long time. That goes to prove her pressures are still reactive and she could still grow out of this hypertension if she stays healthy and grow. With the doctors fearing her pressures were fixed, we were afraid she would never come off the vent and take a turn for the worse, but ALL of your prayers have worked again! Can you believe this amazing work God has done on Kayleigh? It is so evident that He is hearing all of our prayers and continuing to show us how powerful He is. Man!!! I am just so pumped up about her progress that I feel every ounce of excitement in my stomach. It feels as if I am going to burst from the inside out and I want to scream until my voice becomes horse.
Doing God’s will together!
I took the initiative to provide some website/emails of some great possibilities to spread Kayleigh’s story to reach families out there who need to hear it. Whether it is to bring them closer to God, bring their family’s closer together or just give them hope in their own journey’s. Here are a list of local news, local newspaper and some national television shows (links) that I could find for everyone to email. I have written them already, but these producers need to here it from you all. They need to know about Kayleigh and how she has touched your lives, plus it wouldn’t hurt to gain some more prayer warriors. So, if you write your quick message, copy and paste it to each link and send it, we may be able to share our story to millions and what blessing that would be. Make sure you include the blog site so they can be captivated in to learning more. Thank you all so much for your help and let’s do God’s will together. Amen!!!
Oprah - https://www.oprah.com/ord/plugform.jsp?plugId=216
Ellen - http://ellen.warnerbros.com/show/respond/?PlugID=10
Tyra - http://tyrashow.warnerbros.com/beontheshow/show-ideas.php
Rachel Ray - http://www.rachaelrayshow.com/show-info/be-on-the-show/
Good Morning America - http://abcnews.go.com/GMA/HolidayTheme/story?id=4628201
The Today Show (email): today@nbc.com
Our Local News:
WCNC (email) - News@wcnc.com
Observer - http://www.charlotteobserver.com/contact/
WSOC - http://www.wsoctv.com/station/1928956/detail.html
Ellen - http://ellen.warnerbros.com/show/respond/?PlugID=10
Tyra - http://tyrashow.warnerbros.com/beontheshow/show-ideas.php
Rachel Ray - http://www.rachaelrayshow.com/show-info/be-on-the-show/
Good Morning America - http://abcnews.go.com/GMA/HolidayTheme/story?id=4628201
The Today Show (email): today@nbc.com
Our Local News:
WCNC (email) - News@wcnc.com
Observer - http://www.charlotteobserver.com/contact/
WSOC - http://www.wsoctv.com/station/1928956/detail.html
Thank you everyone for everything you have done for our family. We not only pray for Kayleigh to make it through this journey, but we pray that every single one of you find a purpose through Kayleigh's story. She is certainly one tough cookie, but beyond beating every obstacle in her way, she has taught so many people how tough God is too.
God Bless,
The Freemans :)
1/8/09 - See It To Believe It!!!
When I go on and on about Kayleigh and how close to death she was two weeks ago, there is only so much detail someone can describe to implant that image in someones mind of how scary that situation was. But, to show the people first hand what it was like to see her in such a rough state compared to what she looks like today, will make you rejoice in the Lord that He has performed a miracle in our little girl.
You will notice in this first video a huge difference in Kayleigh appearance, but not only that, you will notice the difference in the atmosphere itself. She is swollen beyond recognition, but it is noisy from her machines beeping, there are two nurse working at once, and she has wires and lines coming out from everywhere. Only to compare it to something else will give you the true definition of her progress.
This video from yesterday is the complete opposite. Think about all the same things I mentioned above, mainly appearance and noise level and you will see the difference in what a short two weeks has made. If you have never been in this situation before, just think about the stress level from the first video and the stress relief on this one. It is so amazing and wonderful to see her so comfortable and enjoying a nice big finger desert.
This was another video that I took today just prior to the doctor's second attempt to extubate the vent tube. Kayleigh was just about to go to bed too, but it is so awesome to see her so calm and relaxed. Of course this video was taken a few minutes after we changed her diaper in which she was quite irritated during her pooping process. ha! :) I wish I was allowed to take a nap after every time I went to the bathroom.
Sorry if the videos come across dark, but there is only so much light we like to keep on in the NICU. Kayleigh needs peace an quiet so she can sleep and grow. It is so hard to visit her though and not want to touch or kiss her as it will wake her up. It is amazing how much her heart rate changes when she is sleeping and when she is awake. That extra 20-30 beats per minute because she is excited to see us can cause her to lose weight.
After the second failed attempt today to extubate her, the doctors have decided to give her some steroids (Decadron) to help reduce the inflammation in her airways. That may be the best way to get her off the vent as soon as possible. Saturday is going to be the next attempt, so pray that her airway gets the treatment or recovery time it needs to come off that vent.
Besides the troubles with the vent, Kayleigh is doing fantastic. Her oxygen is around room air (21%) and her pressures settings are almost at their lowest settings. I didn't think you could go much lower than she was before, but I was wrong. Her feeds were increased to 12ml's/hr and tolerating it very well. Since she hasn't been growing a whole lot in the past week, they decided to fortify her milk with Similac Special Care, so she can get 27 calories. Hopefully she will continue to tolerate that as we know how her past has been with fortifier.
The Nitric Oxide was lowered to 10ppm today and Kayleigh is still doing amazing. That goes to show that her pressures may very well be "REACTIVE" still. How amazing would that be if they were??? It would be a true miracle that she has gone through such a rough patch and still come out on top with reactive pulmonary pressures. If we can continue to move Kayleigh in the right direction, she will beat this challenge fair and square and go home a champion! What a tough little cookie!
Does anyone know a good hair restoration or hair coloring for men? (jk) Actually, with all this stress from this crazy roller coaster, I am shocked that I am not completely bald by now. Although my oldest brother swears that "Bald is Beautiful." Maybe on him, but I have taken a straight razor to my head for baseball before and it isn't pretty! The clippers I have cut it short enough because it's receding, but I am not going to go any further than that.I am loving this Twitter thing! It is great to update for you all through out the day so I don't have to post every single night. I know a lot of people get text messages when I update, so I don't want to flood you all with too many messages, but If anyone has any suggestions as to what else they would like to hear about, let me know.
Like I say day in and day out, our goal with this blog is to touch lives. So everyone has homework tonight and that is to tell one person the glory of God through Kayleigh's Story. Pass them along to see what the power of prayer can really do. If you haven't grabbed on of Kayleigh's Button on the tool bar to the right, do so and add it to your blog, website or message board for others to see. Let's all do God's will and touch the lives of others in one way or another. Maybe we can change this world one person at a time because we all know that our future is in the hands of these children. If one person can hug their child closer at night and love them unconditionally, just think of the difference it can make in their child's future.
There is no greater feeling than to love or be loved!
God Bless,
The Freemans :)
1/6/09 - THANK YOU!
Can you believe the progress Kayleigh has made over the past couple days? She has been fighting so hard and doing so well! We are so very proud of her and we have no doubt in our mind that she is going to continue to make great progress and get herself out of that hospital. Kayleigh is currently satting in the mid 90's where she is supposed to be and she is down almost as far as you can go on the vent settings. Her oxygen is set at room air or just above and there is next to none when it comes to the amount of pressure being pumped through that vent tube and in to her lungs. Actually, she is breathing over the vent 99% of the time which is an awesome sign.
The scary part is the muscle/tissue in her lungs that seems to fail her when the vent tube is removed. After doing so well on the vent, the doctors proceeded to remove the vent tube (extubate) from her throat. Once they did this, somewhere in her airways decided to give out and collapse, cutting off all air supply to her lungs. Kayleigh wasn't even wheezing as her airways were shut tighter than can possibly be. The doctors decided to perform a bronchoscopy, which is where the doctors sends a very small video camera down through her nose and down her throat to figure out what is causing the airway failure. It was another procedure we were afraid for Kayleigh to have to endure, but once again (with heavy sedation) she pulled through it like a champ. The results came back quickly and there were no major issues causing the problem. That is wonderful news as we were afraid of the problem being Bronchamalasia, which takes a long time to heal and a trach would be put in place for having to be on the vent long term. The goal now is to keep an eye on the issue to see what direction it takes.
All we can do is pray that she continues to keep up this great progress and grow quickly. The doctors have administered several doses of Lasix (diuretic) to remove some of the extra fluid in and around the lungs, so she has dropped some weight. She has dropped to 6 pounds from being at 6.4 pounds several days ago. It is so amazing to see the growth that she has made in the past six months. There are times that I catch myself checking out the other babies on the way out of the NICU and saying to myself "Wow, look at how small that baby is" and remembering that Kayleigh was much smaller than most of them. This has been a long hard road and the end is no where in site yet, but we are going to keep pushing, praying and fighting as hard as we possibly can. Every single one of our family, friends and followers have been so unbelievable with the support they have given. I feel like I say that every time I post, but I truly can not say it enough, so "Thank you!!!"
Also, I want to tell everyone how lucky I am. I have the best wife in the world. It was nothing specific that she did for me, but what she silently does for me day in and day out. This is not an easy road to travel and to have her put up with my tough days, she is the strongest person I know. I wouldn't have wanted to go through this journey with anyone else by my side. She has been my rock and my shoulder to cry on. There is not a day that goes by that I don't tell her she is beautiful or that I love her more than anything in this world, but I don't say thank you enough. So sweetheart! "Thank you for being there for me through the good times and the bad. When stress takes its toll, you prove to me how much you love me by dealing with me through those rough days. You are the one who shines the light on me and lets me know everything is going to be okay. You give me hope to stay strong and keep positive. I am so deeply in love with you that I couldn't be happier with my life, even when everything else seems to be falling apart. There is no doubt our love is so strong and nothing will ever get between us. I am beyond excited to spend the rest of my life with you by my side because I know you are the best friend anyone could ever want. I love you so much!!!”
The scary part is the muscle/tissue in her lungs that seems to fail her when the vent tube is removed. After doing so well on the vent, the doctors proceeded to remove the vent tube (extubate) from her throat. Once they did this, somewhere in her airways decided to give out and collapse, cutting off all air supply to her lungs. Kayleigh wasn't even wheezing as her airways were shut tighter than can possibly be. The doctors decided to perform a bronchoscopy, which is where the doctors sends a very small video camera down through her nose and down her throat to figure out what is causing the airway failure. It was another procedure we were afraid for Kayleigh to have to endure, but once again (with heavy sedation) she pulled through it like a champ. The results came back quickly and there were no major issues causing the problem. That is wonderful news as we were afraid of the problem being Bronchamalasia, which takes a long time to heal and a trach would be put in place for having to be on the vent long term. The goal now is to keep an eye on the issue to see what direction it takes.
All we can do is pray that she continues to keep up this great progress and grow quickly. The doctors have administered several doses of Lasix (diuretic) to remove some of the extra fluid in and around the lungs, so she has dropped some weight. She has dropped to 6 pounds from being at 6.4 pounds several days ago. It is so amazing to see the growth that she has made in the past six months. There are times that I catch myself checking out the other babies on the way out of the NICU and saying to myself "Wow, look at how small that baby is" and remembering that Kayleigh was much smaller than most of them. This has been a long hard road and the end is no where in site yet, but we are going to keep pushing, praying and fighting as hard as we possibly can. Every single one of our family, friends and followers have been so unbelievable with the support they have given. I feel like I say that every time I post, but I truly can not say it enough, so "Thank you!!!"
Also, I want to tell everyone how lucky I am. I have the best wife in the world. It was nothing specific that she did for me, but what she silently does for me day in and day out. This is not an easy road to travel and to have her put up with my tough days, she is the strongest person I know. I wouldn't have wanted to go through this journey with anyone else by my side. She has been my rock and my shoulder to cry on. There is not a day that goes by that I don't tell her she is beautiful or that I love her more than anything in this world, but I don't say thank you enough. So sweetheart! "Thank you for being there for me through the good times and the bad. When stress takes its toll, you prove to me how much you love me by dealing with me through those rough days. You are the one who shines the light on me and lets me know everything is going to be okay. You give me hope to stay strong and keep positive. I am so deeply in love with you that I couldn't be happier with my life, even when everything else seems to be falling apart. There is no doubt our love is so strong and nothing will ever get between us. I am beyond excited to spend the rest of my life with you by my side because I know you are the best friend anyone could ever want. I love you so much!!!”
We just received the latest bracelet shipment and we will be sending those out shortly. Sorry for the delay, but they’re coming soon. If you haven’t sent in your photo wearing your Kayleigh bracelet, please do so we can put it on the site and add it to the scrapbook we are making for Kayleigh.
The first set of photos are awesome! This first one is from my family in Ohio. The Christmas tree they brought home was a little too big for their angel, so they decided to link all their Kayleigh bracelets to take the angels place. That is just too amazing!!!
The second set is from Ryan who has learned that when he gets a boo boo, to go in the freezer and get the icepack to make the boo boo all better. Well, on his own will, Ryan grabbed the icepack and put it on the computer to heal Kayleigh’s boo boo’s. How sweet is that!!!
Here are some more recent photos that I have received from some of our followers. Thank you all so much for sharing your photos with us and we are just so thankful to have every single one of you in our lives. Keep those prayers coming.
This is from Africa!!! AWESOME!
God Bless,
The Freemans :)
The first set of photos are awesome! This first one is from my family in Ohio. The Christmas tree they brought home was a little too big for their angel, so they decided to link all their Kayleigh bracelets to take the angels place. That is just too amazing!!!
The second set is from Ryan who has learned that when he gets a boo boo, to go in the freezer and get the icepack to make the boo boo all better. Well, on his own will, Ryan grabbed the icepack and put it on the computer to heal Kayleigh’s boo boo’s. How sweet is that!!!
Here are some more recent photos that I have received from some of our followers. Thank you all so much for sharing your photos with us and we are just so thankful to have every single one of you in our lives. Keep those prayers coming.
This is from Africa!!! AWESOME!
God Bless,
The Freemans :)
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