Does anyone know how much fun it is to move? If you could actually see my face, you would see that I was beyond sarcastic when I said that. We have practically moved everything except a couple odds and ends, which we will pick up over the next couple weeks while we travel across town to take Ally and Bran to school. Thank goodness school is only for a couple more weeks. That is a hike back and forth.
A few of us guys took two full days to load and unload the 26 footer Uhaul while Aimee packed a sea of un-ending boxes. You never know how much crap you have until you move. Ya know? It is crazy the amount of junk we tossed, let alone the amount that we still held on to. Thankfully, the rain came light which cooled the air a bit. We only soaked through a couple shirts. Yummy!
Brandon and Allyson seem to love the new place. We took advantage of the horrible market as the market took advantage of us. We found a nice rental home, well outside the city limits, allowing us to still maintain a normalcy we hoped for. Allyson was afraid that she was going to have to share a room with her brother, which isn't such a good thing since she is about to hit "that" stage. I guess turning this blog in to a diary of a Dad who is dealing with children facing puberty would be pretty funny, what do you think? lol Ouch, do I have to????
Quickly jumping to a new topic...THANK YOU ALL for pitching in to help us financially. It has allowed us to focus on our family and get back on our feet. Aimee and I feel as if God has given us something here that can do so much for so many, so we don't want to waste a single second. We have been praying and searching for a way to continue Kayleigh's legacy and help others out there full time. Whether we worked for March of Dimes, The Children's Miracle Network or build an organization of our own, we have no idea. Our brains are fried, but we would like to hear some of your ideas and maybe we could all build something together as a team.
Either way, I want to reach out to those who have given us so much strength this past year. Every single one of you have given us ideas, thoughts, questions, concerns when it came to Kayleigh's best interest, so I know we could all spark some great ideas here. The last thing we want to do is do the wrong thing and find ourselves in deep water. We love every single one of you for the support you have given us and I know we can continue to work together for a common good, in honor of Kayleigh.
So, let's start this journey off, not as a "OH Woe Me" for having lost a beautiful child, but "Praise you Lord" for Kayleigh, now show me what we can do with what you gave us so that we can honor you.
God Bless,
5/22/09 - Thank You Faith
I wanted to take a break from packing and moving to post a quick, but endless thanks to Faith Massey at "Now I Lay Me Down To Sleep" for the wonderful service she gave our family the day Kayleigh went to Heaven.
Faith was very professional and heartfelt, that having her with us was like having family there when we needed her most. In a time of sadness, you never think to have someone capture your final moments with that special someone. We are so blessed that Faith was there to take photos of those beautiful moments we had with Kayleigh.
Please visit Faith's blog (CLICK HERE), where she has put together a video of the beautiful photos she took May 11th and how I pray no one would ever need to contact "NILMDTS" because a loss of a loved one, it was by far the most greatest decision we have ever made. This is an organization filled with pure love and we couldn't be more blessed to have them a part of our lives.
Thank you Faith!
5/18/09 - BEAUTIFUL
That is all I can really say about the memorial. It was just beautiful! We had over 200 people come to celebrate Kayleigh's life with us. We had support from as far as California and we couldn't be more thankful to all the people who were there. It was a such a blessing.
To recap the memorial so many of you who were not able to make it will get a chance to see what went on. The memorial started off with Brian Carpenter (Aubrey Carpenter's husband) sharing our relationship and opening up in prayer. I had asked Brian to do the sermon since we have built a great new friendship and he is a pastor who knows the ins and outs of our family. Him and Aubrey came and visited us from Illinois not too long ago to come see us and Kayleigh.
Wade Joye then sang one of his new songs from Elevation Church that will be released on their upcoming CD. Wade and Ferris Joye had their twin girls in the NICU with us and Liana shared a room with Kayleigh for a few months. They have been such a blessing to our family and we were so happy that Wade could sing for us at the memorial.
Brian then took over and preached his sermon. He did a fantastic job and we are very proud of him for coming all this way for our family. Brian and Aubrey are true examples of what you would call "Great Friends." After Brian spoke his sermon, my Mom (Patricia Freeman) and Aimee's mom (Joyce Rogers), read what they wrote and had everyone in tears with such beautiful things to say.
Aimee and I then read our letters to everyone. We first started off thanking the NICU staff for all of their hard work and dedication to taking wonderful care of Kayleigh over the past 11 months. We gave them all pink and brown ribbons so others would recognize who these special people are. Aimee spoke first and did an amazing job, sharing miracle memories of Kayleigh to reading a beautiful poem. I then spoke and could barely hold it together up there. It turned out really nice.
After speaking, we all watched the video that a good friend (Niecey) helped me make in perfect time over the past week. There are three songs that we played consecutively, but were too large to put in to one file. Some of the new professional photos from Faith @ Now I Lay Me Down to Sleep are visible and are so unbelievably beautiful. You will recognize them when you see them. Grab a tissue because this is just amazing:
Brian then closed in prayer and we were able to meet everyone who came from near and far to be with us during this beautiful day. We have a house of flowers that make me sneeze, but are beyond beautiful and we just love looking at them. Our whole downstairs is now a flower garden.
I have been overflowed with balloon release photos, so I am going to put a short movie together showing you all those photos soon. When we let our balloons off, it was raining and everyone was so dressed up, but they didn't care one bit because we were doing this for our sweet Kayleigh.
When the memorial ended, Aimee and I were scared that we would just break down and crawl in a corner, but I feel that we laughed a lot today. We had a good time teasing and flirting with each other and I pray that continues to happen. We should not be stricken with depression when there was not a single thing bad about what Kayleigh did for us in this past year. She is nothing short of a miracle. We are so blessed to be her parents and to share her story with so many people. Kayleigh has touch all of our lives and we couldn't be more happier than that.
Here are some of the photos of our balloon release. We had 50 balloons go to the sky and I have already received to email's from two different families who found balloons and were instantly touched by Kayleigh's story. Praise God!
I also wanted to share with you some of the great photography done by Faith Massey from "Now I Lay Me Down To Sleep" and she has her own blog. To check it out: Click Here
"Kayleigh, we miss you tons already and hope you are having a blast with all your new friends in Heaven. We Love You!"
God Bless,
To recap the memorial so many of you who were not able to make it will get a chance to see what went on. The memorial started off with Brian Carpenter (Aubrey Carpenter's husband) sharing our relationship and opening up in prayer. I had asked Brian to do the sermon since we have built a great new friendship and he is a pastor who knows the ins and outs of our family. Him and Aubrey came and visited us from Illinois not too long ago to come see us and Kayleigh.
Wade Joye then sang one of his new songs from Elevation Church that will be released on their upcoming CD. Wade and Ferris Joye had their twin girls in the NICU with us and Liana shared a room with Kayleigh for a few months. They have been such a blessing to our family and we were so happy that Wade could sing for us at the memorial.
Brian then took over and preached his sermon. He did a fantastic job and we are very proud of him for coming all this way for our family. Brian and Aubrey are true examples of what you would call "Great Friends." After Brian spoke his sermon, my Mom (Patricia Freeman) and Aimee's mom (Joyce Rogers), read what they wrote and had everyone in tears with such beautiful things to say.
Aimee and I then read our letters to everyone. We first started off thanking the NICU staff for all of their hard work and dedication to taking wonderful care of Kayleigh over the past 11 months. We gave them all pink and brown ribbons so others would recognize who these special people are. Aimee spoke first and did an amazing job, sharing miracle memories of Kayleigh to reading a beautiful poem. I then spoke and could barely hold it together up there. It turned out really nice.
After speaking, we all watched the video that a good friend (Niecey) helped me make in perfect time over the past week. There are three songs that we played consecutively, but were too large to put in to one file. Some of the new professional photos from Faith @ Now I Lay Me Down to Sleep are visible and are so unbelievably beautiful. You will recognize them when you see them. Grab a tissue because this is just amazing:
Brian then closed in prayer and we were able to meet everyone who came from near and far to be with us during this beautiful day. We have a house of flowers that make me sneeze, but are beyond beautiful and we just love looking at them. Our whole downstairs is now a flower garden.
I have been overflowed with balloon release photos, so I am going to put a short movie together showing you all those photos soon. When we let our balloons off, it was raining and everyone was so dressed up, but they didn't care one bit because we were doing this for our sweet Kayleigh.
When the memorial ended, Aimee and I were scared that we would just break down and crawl in a corner, but I feel that we laughed a lot today. We had a good time teasing and flirting with each other and I pray that continues to happen. We should not be stricken with depression when there was not a single thing bad about what Kayleigh did for us in this past year. She is nothing short of a miracle. We are so blessed to be her parents and to share her story with so many people. Kayleigh has touch all of our lives and we couldn't be more happier than that.
Here are some of the photos of our balloon release. We had 50 balloons go to the sky and I have already received to email's from two different families who found balloons and were instantly touched by Kayleigh's story. Praise God!
I also wanted to share with you some of the great photography done by Faith Massey from "Now I Lay Me Down To Sleep" and she has her own blog. To check it out: Click Here
"Kayleigh, we miss you tons already and hope you are having a blast with all your new friends in Heaven. We Love You!"
God Bless,
5/16/09 - We Love You!
As we finished up preparations for the memorial, we wanted to make everyone aware of a couple things. First off, please take photos of you all releasing the pink balloons with Kayleigh's note(see previous post) attached on Sunday at 4:00pm (EST). I would like to do a new post next week and show all the photos.
Also, a good friend, Niecey, did one incredible job of creating a video for us for the memorial. It has a lot of new photos, including the professional photos from "Now I Lay Me Down to Sleep" and 3 songs that just seemed to be perfect for Kayleigh. Of course, you know one of them ;) I really can't wait to show you the video.
Tomorrow is the big day and my goodness has this week has flown by. Even though everything we prepared is ready, we are not. We barely got a chance at all this week to just lay there, cry our eyes out and miss her. All next week, we will be packing and heading off to the new house. By the way, the bank didn't want to return phone calls to settle things up and decided to sell the property. I guess it was God's way of showing we needed to be out of the house. So once we are done moving, I am sure it is just going to hit us hard like a ton of bricks that she's gone.
Thank you all for your thoughts and prayers through this. I look forward to meeting a lot of you tomorrow at the memorial and for those who can't make it, we will be sure to recap it all in a post, so you feel as if you were here. Thank you so much for being awesome friends to our family.
A lot of our strength comes from the Lord, but a big chunk of it comes from your support. Every single one of you are family to us and we love you!
God Bless,
Also, a good friend, Niecey, did one incredible job of creating a video for us for the memorial. It has a lot of new photos, including the professional photos from "Now I Lay Me Down to Sleep" and 3 songs that just seemed to be perfect for Kayleigh. Of course, you know one of them ;) I really can't wait to show you the video.
Tomorrow is the big day and my goodness has this week has flown by. Even though everything we prepared is ready, we are not. We barely got a chance at all this week to just lay there, cry our eyes out and miss her. All next week, we will be packing and heading off to the new house. By the way, the bank didn't want to return phone calls to settle things up and decided to sell the property. I guess it was God's way of showing we needed to be out of the house. So once we are done moving, I am sure it is just going to hit us hard like a ton of bricks that she's gone.
Thank you all for your thoughts and prayers through this. I look forward to meeting a lot of you tomorrow at the memorial and for those who can't make it, we will be sure to recap it all in a post, so you feel as if you were here. Thank you so much for being awesome friends to our family.
A lot of our strength comes from the Lord, but a big chunk of it comes from your support. Every single one of you are family to us and we love you!
God Bless,
5/13/09 - Update on Memorial
With Kayleigh's memorial coming up, preparations are being made and things are starting to come together.
Many of you asked if there were something you could do to help and we came up with an idea. On Sunday (May 17th), at 4:00PM(EST) after the memorial, we will be letting off pink balloons in Kayleigh's name. Tied to each balloon will be a card that reads:
Kayleigh Anne Freeman
Our One Pound Miracle from God
(6/23/08 - 5/11/09)
www.KayleighAnneFreeman.blogspot.com
God has used Kayleigh in many ways and just because she is in Heaven with our Lord, that doesn't mean our work is done. Let's continue to spread faith, hope and love to those who need to receive it. God will lead those balloons to the right hands.
Also, many of you asked if there is an address to send flowers and what we are doing in lieu of flowers, are donations to Levine Children's Hospital NICU at Carolina's Medical Center - 1000 Blythe Blvd. Charlotte, NC 28203. In the remarks, we are all putting "From Kayleigh"
Thank you all so much for your kind comments and support through this. Aimee and I are hanging in there. We will cry, laugh and then cry some more, but we are being strong for each other no matter what. That is what is important right now. God has blessed Aimee and I so much to be upset with Him or angry at anything. Kayleigh is a special person and we can all agree that what she has done in her short life is beyond amazing. However, we do miss her so very much and it feels as if a piece of us is missing.
She may not be in my arms, but she will remain in my heart.
God Bless,
Many of you asked if there were something you could do to help and we came up with an idea. On Sunday (May 17th), at 4:00PM(EST) after the memorial, we will be letting off pink balloons in Kayleigh's name. Tied to each balloon will be a card that reads:
Kayleigh Anne Freeman
Our One Pound Miracle from God
(6/23/08 - 5/11/09)
www.KayleighAnneFreeman.blogspot.com
God has used Kayleigh in many ways and just because she is in Heaven with our Lord, that doesn't mean our work is done. Let's continue to spread faith, hope and love to those who need to receive it. God will lead those balloons to the right hands.
Also, many of you asked if there is an address to send flowers and what we are doing in lieu of flowers, are donations to Levine Children's Hospital NICU at Carolina's Medical Center - 1000 Blythe Blvd. Charlotte, NC 28203. In the remarks, we are all putting "From Kayleigh"
Thank you all so much for your kind comments and support through this. Aimee and I are hanging in there. We will cry, laugh and then cry some more, but we are being strong for each other no matter what. That is what is important right now. God has blessed Aimee and I so much to be upset with Him or angry at anything. Kayleigh is a special person and we can all agree that what she has done in her short life is beyond amazing. However, we do miss her so very much and it feels as if a piece of us is missing.
She may not be in my arms, but she will remain in my heart.
God Bless,
Memorial Information
The memorial celebration for Kayleigh's life will be held:
Sunday, May 17th @ 1:00pm located at:
McEwen Funeral Service
Pineville Chapel
10500 Park Road
Charlotte, NC 28210
(704)544-1412
Everyone who can attend is more than invited. We would love to share in this celebration of life with all of you who supported us through this journey.
Many of you asked for our address and up until May 23rd (when we move), we will still be at our home located at:
12619 Frank Wiley Lane
Charlotte, NC 28278
Please don't forget to tune in tomorrow to see our story on "The Doctors." They already put up a sweet message about Kayleigh today on their website. You can check it out here: Kayleigh
Also, if you missed the preview to the show, CLICK HERE
Thank you all very much for your kind words of encouragement. This is so tough, but we remain strong because of our faith and because of your love for us.
God Bless you all!
Sunday, May 17th @ 1:00pm located at:
McEwen Funeral Service
Pineville Chapel
10500 Park Road
Charlotte, NC 28210
(704)544-1412
Everyone who can attend is more than invited. We would love to share in this celebration of life with all of you who supported us through this journey.
Many of you asked for our address and up until May 23rd (when we move), we will still be at our home located at:
12619 Frank Wiley Lane
Charlotte, NC 28278
Please don't forget to tune in tomorrow to see our story on "The Doctors." They already put up a sweet message about Kayleigh today on their website. You can check it out here: Kayleigh
Also, if you missed the preview to the show, CLICK HERE
Thank you all very much for your kind words of encouragement. This is so tough, but we remain strong because of our faith and because of your love for us.
God Bless you all!
5/11/09 - Goodbye Sweetheart...for now.
Time is going so slow as if people are flying by us, but our world is standing still. The pain in our hearts burn and the tears flow freely like a never ending waterfall. Our eyes try to close as our bodies are fatigued, but our minds are racing with the thoughts of the memories we shared with Kayleigh through these past 11 months. Our souls are screaming with pain as this story was supposed to have a different, dream come true ending. We hold each other close, squeezing tightly, praying this sense of emptiness will fade away.
We never thought we'd finally leave the hospital one last time with an empty car seat and an empty crib to bring our precious daughter home in. The house is cold, it is dark and it is lonely. Our arms that once held this precious miracle will never hold her again anytime soon. We will lay our heads to rest tonight, we will soon wake, but we won't be returning to the hospital. We said our last goodbye only to say hello again one day in the distant future.
Kayleigh rests peacefully, in no more discomfort, and in no more pain. She looked so beautiful tonight as she took her last and final breath, and her beating heart took one last and final beat. Her sparkling brown eyes are now closed and her body now remains still. She is now in the presence of our Lord, her broken body made new, surrounded in the comforting arms of those we've loved who greeted her in the glorious Heaven we know.
Time now stands still for all of us who will miss her dearly, who have been touched by her miraculous journey, and who will never forget her soft sweet smell. Kayleigh will forever be our one pound miracle from God and we certainly will all look forward to seeing her again, holding her in our arms and dancing in circles until we can't dance anymore. No words can describe how amazing and beautiful Kayleigh is, but we all know too well that this is only goodbye, for now.
May this day be remembered for the rest of our lives. May Kayleigh's story continue to teach us about faith and the miracles our Lord can create when we all pray together as a whole. May Kayleigh's story continue to give us hope in our own personal journeys and give us the strength to never give up the fight. May Kayleigh's story continue to fill our hearts with love so that we may hold each other tight and support those in need.
When you tuck your children in bed or kiss your loved one goodnight, please say a prayer for our family. Please pray that we will have strength to get through this difficult time and we will grow in our faith so much more for having experienced the work of God through Kayleigh. Pray we will be there for each other and hold one another tight, as Kayleigh was and will forever hold a special place in our hearts.
We plan to have a memorial next weekend (most likely Sunday) for our sweet Kayleigh and EVERYONE who can come, is invited. We will be posting further details shortly so everyone has time to prepare. We will cry together, laugh together and remember what a precious blessing God has given us all through Kayleigh. May we come together and praise God for the love he has bestowed in all of us.
"Kayleigh, we know our life on earth is just a spec of time compared to the life we have in eternity with you and our Lord. We look forward to the day that we can pick you up and swing you around, dancing, singing and worshipping together. I am sure that your journey to Heaven was greeted with many open arms.
We are so very proud of you for everything you have done in such a short period of time. You've showed us what strength truly is, what determination truly is and what love truly is. There will not be a day that passes that we won't look at your photos and remember how awesome you felt in our arms. Your soft skin that brushes our lips and your tiny little hands that grip our fingers for comfort will always be missed.
We will never get to tuck you in your own bed at night and we will never get to pick you up when you fall. We will never get to hold your hand while you cross the street and I will never get to walk you down the aisle, but please know that your Mommy and I are so blessed that God gifted us with your love, even if it was only for a very short period of time. You will always be in our hearts and we can't wait until we meet again. We love you endlessly and we already miss you so very much! Goodbye Sweetheart...for now."
Love,
Mommy and Daddy
Our wishes were granted and Kayleigh finally felt the cool breeze on her face.
And we finally got to hold our precious miracle without anything attached.
Rest in peace our sweet Angel!
We love you so very much!
Kayleigh Anne Freeman (June 23, 2008 - May 11, 2009 @ 9:44PM)
5/10/09 - Happy Mother's Day
HAPPY MOTHER'S DAY
I hope that everyone has a special day today and just know that EVERY Mom is a miracle from God and should be lifted up for their ever lasting love.
We are all so blessed to have awesome Moms in our lives.
We love you ALL!
God Bless,
5/9/09 - Every Step Of The Way
Well, today didn't go as planned. We were hoping for another glorious visit with tons of photos and a lot of great moments, but unfortunately, Kayleigh was not feeling too great.
We are not sure if Kayleigh is not feeling well because of the weaning of her Flolan or if this is neurological problems. Last night's head measurement showed Kayleigh's head has swelled even more than the previous three nights (which showed no more swelling). She has been bearing down and turning red, with the occasional fast, heavy breathing that drops her sats a little.
Our fear is that Kayleigh may be experiencing some irritability and that is the last thing we want her to deal with, but if this is just caused by the weaning of her Flolan medication, then we should see some signs of improvement very soon as the doctors are currently taking action with the speed of the weaning process.
If this is neurological and may cause Kayleigh to be irritable or uncomfortable, we would have no choice but to let Kayleigh go in peace as this is God telling us it is time. We want to do what is best for Kayleigh and our family, and to make our decisions based out of faith and love, so we feel at peace with making the right decision. God has proven before and can still create a miracle at anytime. Listening to Him is the most important decision right now.
With hard days like these and even harder ones to come, there seems to be one or two people who brighten up our bad days with a smile. Or should I say in this case, it was a shout of laughter. Eva Fuller sent this awesome video over for Aimee and you all need to check it out: CLICK HERE
Here is some exciting news!!! If you have been with us for a while, you would have seen a post that I wrote about being on a television show that was quickly taken down. Well, it was taken down for secretive reasons by the producers, but now it is free rain to talk about it.
Wednesday, May 13th in the afternoon, "The Doctors" will be airing a full special on our family and the journey we have endured with Kayleigh in these unfortunate times, facing this horrible market we live in. It was more than a pleasure shooting here in Charlotte for the show, meeting some famous people while making the best out of our very quick (1 day) visit to Hollywood to shoot on the set. Check your TV Guide and make sure you set your TV to record it. Click here to see the preview for our show: The Doctors
Extra Extra, Read all about it!!! For all of you Charlotteans, Mark Washburn is writing a column about us tomorrow (Saturday) in the Charlotte Observer.
Many of you have been e-mailing me, asking if they can still get Kayleigh bracelets and I finally fixed the link over to the right. I apologize for not fixing it sooner, but I honestly didn't have the time to package and ship out boxes on my own with everything going on, so I just left it broken, sorry.
Soooo....a good friend, Rachel, decided to help us out with the bracelets and is going to be doing all the orders, packaging and shipping. God Bless Her!!! The proceeds are going to create an unbelievable scrap book filled with the photos you send in, page decorations, and a note if you wish to write one. Yes, you need to take a photo of you and your family wearing your bracelets and send it to me at (Adam@TeamFreemanProperties.com) so we can add it to the scrapbook. This will be special for us to have forever, to always remember all the wonderful people who supported us and prayed for us through this journey.
Look over to the right on the tool bar to get your Kayleigh bracelet.
Even with the sadness amongst us, God is continuing to help us share Kayleigh's story with the world. Whether it is on this blog, on television, newspapers, or even with sharing your bracelet stories, everyone needs to be filled with the faith, hope and love that our Lord has blessed us with. Our goal from the beginning was the help others with our story. We are doing it full force and we will continue to do this for the rest of our lives. We hope you are with us every step of the way.
God Bless,
5/8/09 - Someway, Somehow, Someday
This is one of our favorite dresses that Kayleigh's has. She looks so precious and they have these pink shorts (or should I say undies) that go with it too.
As of right now, they have decreased the Flolan for her hypertension over the past two days. They are dropping it 10% each time, and they suspect it will take at least 10 days for her to completely come off of it. Our estimated time for coming home is no less than three weeks, which we were not happy to hear and there unfortunately are no ways to make that happen sooner.
Since our main goal is to bring Kayleigh home, we decided that increasing her feeds right now will only increase the risk of her belly blowing up more than it has and keeping her in the hospital longer. We've all decided to increase the triple mix IV fluid to give her the nutrients she needs, so she can stay healthy.
Kayleigh's breathing and irritation seems to be increasing a little more today than normal and I am not sure if that is due to the weaning of the Flolan, but we will keep an eye out on that. We certainly do not want Kayleigh to be going through any pain or discomfort. Overall, she is doing well and comfortable.
Many asked if Kayleigh will remain in the sleep-in room or go back to the NICU and unfortunately she went back to the NICU after our visit. However, since we had a great time the other day, Aimee and I will be enjoying a day with Kayleigh tomorrow in one of the sleep-in rooms. My parents will be coming up to visit and hang out for a little while. Aimee and I plan to watch TV with Kayleigh and just enjoy a peaceful and quiet day with her.
I can't wait to share some more wonderful photos tomorrow. I took over 200 photos in less than 2 hours the other day when we were in the sleep-in room with Kayleigh and the kids. Aimee and I will be there for at least 6+ hours, so I should have ample time to take some really good ones.
Thank you again for everyone who donated money and prayed your hearts out to help our family through this tough time. The emotions we are dealing with change every minute that it is very hard to describe or even explain. All I know is that we are so blessed to have wonderful friends like all who have lifted us up and kept us strong through this. I only wish I can return the favor someway, somehow, someday.
God Bless,
5/6/09 - "Your Love Is So Amazing"
Isn't that just amazing? Kayleigh is now weighing just over 11 pounds. Can you believe that??? It is wild to think that she is 11 times her birth weight.
I know there are a lot of questions coming in and with all the posts that have been submitted in the past 10+ months, I am sure it will be hard to go back and get an clear understanding of everything that is going on. The summary above on the title helps clear her journey up, but I would like to break it down a little more. So, for those who are just joining us or those who have gotten dizzy on our ravaging roller coaster and and need a quick refresher on what is going on with Kayleigh, here we go:
Kayleigh was born 6/23/08 weighing 1 pound - 1 ounce (470 grams to be exact). She was 10.5 inches long. If you get a ruler and try to get an understanding of how small this miracle was, you will literally
Just to sum up Kayleigh's 10 month roller coaster ride quickly for you:
Surgeries:
ROP Stage 3 - Eye Surgery
Gastrointestinal Surgery - Bowels
VSD Repair Surgery - Open Heart
Tracheostomy Surgery - Airways
G-tube Surgery - Feeding Tube
Nissen Surgery - Stomach
Bilateral Hernia Repair Surgery - Groin
Procedure:
10+ Blood Transfusions
Skin Biopsy - Chromosomal Studies
Rectal Biopsy - Hirschsprungs Disease
Intestinal Biopsy - motility
Heart Catherization - Pulmonary pressures
(3) Central Line placements
Pepcin Test - aspirations
Impedence Study - reflux
(2) Upper Gastrointestinal Studies - motility
(2) Lower Gastrointestinal Studies - motility
15+ PCVC Line Placements - long term IV's
10+ Blood Culture Tests - for infections
200+ Blood Gas Tests - Pin pricks to her toes (and I'm probably well below my guesstimate)
I am sure I am missing many other things.
So, now that you have seen what she has been through in a short period, it kills me to say that after this final surgery, she was supposed to be coming home. Coming home perfect that is. But, something happened in this final surgery which caused Kayleigh to not get enough blood and/or oxygen to her brain causing her Cerebral Cortex to be damaged and considered flat, no waves, not working, or no activity.
Kayleigh's brain stem still functions, allowing her heart to work, breath and have reactive movements (nothing purposeful). After many many hours of praying, her injured brain is now deteriorating and can not repair itself without a miracle. We went from riding up and down on this NICU roller coaster, to becoming the wheels, going round and round with our emotions in a complete whirlwind.
We now have goals to bring Kayleigh home to live out her remainder time right where we prayed she would make it from the beginning. The great news is, we are close to that prayer being answered, but Kayleigh will mind be enjoying that moment in another place. The rest of her body may be working fine here, but we believe her mind is working perfectly up there in Heaven.
From day one when the doctors didn't believe Kayleigh would survive the pregnancy, our prayer warriors have been behind us and miracles occurred. When Kayleigh went through every devastating and intense surgery, our prayer warriors were still behind us and Kayleigh pulled through the unthinkable. Right now, our prayer warriors are praying for another miracle from God, and we will never give up until God decides to show us His plan. If that plan brings Kayleigh home to the Lord and to a much better place, our prayer warriors will rejoice in one amazing journey for one beautiful little girl.
Kayleigh is our one pound blessing from God and she is nothing short of His beauty, strength and love. We are all better people for have knowing Kayleigh and we will be sure to share her story forever so others can be touched so deeply like all of us.
"God, Thank you for blessing us with Kayleigh and ALL of our old, new and future friends here through Kayleigh's journey. May we continue to find faith, hope and love through your works. We may not see your reasons sometimes, but we trust you with all of our hearts. We thank you for holding our hands through all of this and allowing us to use/sacrifice things in our lives to help others. We pray that everyone reading this will see that You (God) will not give us anything that we can't handle and no matter what other trials and tribulations people may be going through, we pray they will trust in your reasons and find peace in knowing your love is so amazing!!!"
5/5/09 - A Family Again
Aimee and I almost forgot what it felt like to have a smile on our faces until Allyson and Brandon were able to spend some time with Kayleigh today after waiting for so long. August was the last time they saw her due to RSV season(horrible lung disease) prevented children in the NICU.
The hospital allowed Kayleigh to be moved to a sleep-in room where we could lounge around with her on a bed and allow the kids to hold her and love on her. It was a magical moment and it felt so good to be a family again. It is very sad to say, but this was only our second chance to have a family photo taken together.
I hope you enjoy seeing them as much as we enjoyed living them.
God Bless,
The hospital allowed Kayleigh to be moved to a sleep-in room where we could lounge around with her on a bed and allow the kids to hold her and love on her. It was a magical moment and it felt so good to be a family again. It is very sad to say, but this was only our second chance to have a family photo taken together.
I hope you enjoy seeing them as much as we enjoyed living them.
God Bless,
5/3/09 - Peacefully Sleeping
Kayleigh had another uneventful day filled with peaceful sleeping such as you see above. The swelling has not increased anymore over night, which is good news towards getting closer to bringing her home. They need to transfer her hypertension medication over before they can send her home, which they will begin to do on Monday. Pray she tolerates the new medication so she can come home soon.
Right now, she is up on her feeds and tolerating it well. She is rarely ever showing signs of irritation and her heavy breathing comes on every now and then. We are not sure what the cause of that is, but since she has never done it before, we can only relate it to her brain injury.
Our goal right now is to pray the swelling in her brain does not take her from us before we can bring her home to her beautiful room. We have prayed many prayers for this day, and even though her situation was not what we expected, we still can't wait to walk her out of those hospital doors, out in to the sunlight and make that glorious journey to our home.
Please continue to pray that our dreams come true and may her time here on earth ends with us at home and not in the hospital. May God bless us with this wish, even though His plans for Kayleigh may be different in the near future.
We thank you all again SO MUCH for your prayers and support. You have all been so wonderful to us and we can't thank you enough. I have read almost every email that has come in, but unfortunately will not be able to respond to everyone. Please know that your emails and comments keep us strong and help us through these difficult days.
God Bless,
5/2/09 - Thank You!
There are no new updates with Kayleigh today. She has been sleeping peacefully most of the day. God Bless you sweet girl.
Aimee, I do want to thank you for being my rock through this and comforting me when I need to let the tears flow. I couldn't be more blessed to have such a wonderful woman in my life. You are my everything and just know that we are going to get through this together. I love you so very much!
God Bless,
Aimee, I do want to thank you for being my rock through this and comforting me when I need to let the tears flow. I couldn't be more blessed to have such a wonderful woman in my life. You are my everything and just know that we are going to get through this together. I love you so very much!
God Bless,
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