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,


Anonymous said...

I've been following your blog for awhile. You have a beautiful little girl. Your story and faith has touched my heart.
Take care and I'll keep watching for updates!

SAH_mommy2three said...

At least you are starting to see an end... I know the trach isn't exactly what you had hoped for - but if it gives Kayleigh a chance to heal and get stronger and be with your family at home then it is great news!!!

Jennifer said...

I just stumbled across your blog and I shall be praying. I had three preemies, not as preemie as your miracle. I spent months in NICUs, yet not as long as you have. God has something special planned for your daughter. Again, I shall be keeping all of you in my prayers.

Carole said...

Praying everyday for our Light weight Champ of the world!!!


Alicia said...

I am sad about her needing the trach, but as you have said, it will make it possible for your sweet Kayleigh to come home. I am so glad you have a good attitude about the trach.

I am always praying for Kayleigh and your family.


E @ Scottsville said...

Wow, I get goosebumps just thinking about you guys getting to take your baby girl home finally after such a long hard journey. You won't even know what to do with yourselves!!!! Imagine what Kayleigh will think of "home". Mmmmm, it just sounds too wonderful!!!

Anonymous said...

I am so grateful for your positive attitude and grace! You and your family have truly changed me! I absolutely adore little Kayleigh and pray every day that she gets to go home with you all as soon as she is ready! I have twin girls that were born just 2 days after Kayleigh. I tell them about her and they can't wait to meet her (they really told me that!). I check the blog daily (sometimes more) and hope to see the rest of Kayleigh's story lead to the happiest ending for all of you!
Much love from Natick, MA

fmattso said...

OMGosh I read this post and it made me cry! To know that you have barely gotten to hold that sweet baby in your arms breaks my heart. But to know it is getting closer to the day you get to love on her all day every day with hugs and kisses and cuddles just shows how good God is. I pray for you guys often every day! God bless all of you! Praying every day!

Anonymous said...

Oh, I can't wait until Kayleigh's homecoming day!!! It won't be long now, I just know it! Praying for your family every day!
Jenni, KY

Anonymous said...

I love the positive forward progress that has been happening lately! I will absolutely keep praying for my little cyber-baby!
With love from Southern NH

Jennifer said...

Glad to hear the good news. Prayers to you all for no speed bumps in the road ahead. And as for the any rude comments you get, they are obviously coming from people with no heart and they also need a prayer said for them!

Mandy said...

I check in every day. My children and I pray for Kayleigh every evening. Please let us know when the trach surgery will be. Praying!

Val said...

She is so beautiful and such an angel. I pray for her daily and think about her constantly. Thank you for sharing your story with everyone.

The Carpenters said...

We'll keep praying for your precious little gift from God. Or should I say OUR precious gift from God? She is incredible! And she's changed so many lives. I wish I could just give her a hug and meet her!

Anonymous said...

I just happened across your blog last night and I wanted to encourage you with a story I found on the internet years ago. It is the story of Dana Lu Blessing:

"A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana
Blessing. She was still groggy from surgery.

Her husband, David, held her hand as they braced themselves for the latest news.

That afternoon of March 10, 1991, complications had forced Diana, only
24-weeks pregnant, to undergo an emergency Cesarean to deliver couple's new daughter, Dana Lu Blessing.

At 12 inches long and weighing only one pound nine ounces, they
already knew she was perilously premature.
Still, the doctor's soft words dropped like bombs.

"I don't think she's going to make it," he said, as kindly as he could.

"There's only a 10-percent chance she will live through the night, and
even then, if by some slim chance she does make it, her future could be
a very cruel one."

Numb with disbelief, David and Diana listened as the doctor described
the devastating problems Dana would likely face if she survived.

She would never walk, she would never talk, she would probably be
blind, and she would certainly be prone to other catastrophic conditions
from cerebral palsy to complete mental retardation, and on and on.

"No! No!" was all Diana could say.

She and David, with their 5-year-old son Dustin, had long dreamed of
the day they would have a daughter to become a family of four. Now,
within a matter of hours, that dream was slipping away.

But as those first days passed, a new agony set in for David and

Because Dana's underdeveloped nervous system was essentially 'raw',
the lightest kiss or caress only intensified her discomfort, so they
couldn't even cradle their tiny baby girl against their chests to offer
the strength of their love. All they could do, as Dana struggled alone
beneath the ultraviolet light in the tangle of tubes and wires, was to
pray that God would stay close to their precious little girl.

There was never a moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here
and an ounce of strength there.

At last, when Dana turned two months old, her parents were able to
hold her in their arms for the very first time. And two months later,
though doctors continued to gently but grimly warn that her chances of
surviving, much less living any kind of normal life, were next to zero,
Dana went home from the hospital, just as her mother had predicted.

Five years later, when Dana was a petite but feisty young girl with
glittering gray eyes and an unquenchable zest for life. She showed no
signs whatsoever of any mental or physical impairment. Simply, she was
everything a little girl can be and more. But that happy ending is far from the end of her story.

One blistering afternoon in the summer of 1996 near her home in
Irving, Texas, Dana was sitting in her mother's lap in the bleachers of
a local ball park where her brother Dustin's baseball team was

As always, Dana was chattering nonstop with her mother and several
other adults sitting nearby when she suddenly fell silent Hugging her
arms across her chest, little Dana asked, "Do you smell that?"
Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain."
Dana closed her eyes and again asked, "Do you smell that?"

Once again, her mother replied, "Yes, I think we're about to get wet.
It smells like rain."

Still caught in the moment, Dana shook her head, patted her thin
should ers with her small hands and loudly announced, "No, it smells like

It smells like God when you lay your head on His chest."

Tears blurred Diana's eyes as Dana happily hopped down to play with
the other children.

Before the rains came, her daughter's words confirmed what Diana and
all the members of the extended Blessing family had known, at least in
their hearts, all along.

During those long days and nights of her first two months of her life,
when her nerves were too sensitive for them to touch her, God was
holding Dana on His chest and it is His loving scent that she remembers
so well."

There will be a day when little Kayleigh and playing and jumping around just like Dana. God is so good and I have all confidence in the fact that you are all going to come through this stronger with your "One Pound Blessing from God"!! :D


Sarah Suzy said...

I cannot get over how cute she looks in these pictures! I am thankful that there is a light at the end of the tunnel. I am just so thankful to the Lord for Kayleighs life and for the inspiration she has been to my daily walk with the Lord. I know the trach is not the best thing that could have happened, but Kayleigh is a fighter and she will be just fine and trach free someday!!! We will continue to pray that the reflux stays away and that she handles her bottles well. we will all pray Kayleigh home!!!

Sarah,Chris,Helaina and Ava J.

Inch by Inch said...

I just wanted to say hello. I've been following your blog for awhile and praying. My little girl has a gtube which she got at 8 months old after a few months of NG tube for failure to thrive/reflux and food allergies. At age 5 she still has it but is eating really well, just not quite well enough to be completely tube-free (she needs it mainly during illness and goes weeks without needing it at all). I have to say that I was kinda hoping Kayleigh would get the gtube soon. I know I am not her parents or her doctors and I'm sure that you and the doctors are by far the best people to make those decisions. I just wanted to tell you that my daughter developed huge oral aversions from the NG tube. She never had the tube in her mouth. However after she got her gtube placed she made better progress with the feeding. I have heard the same from many other parents of tube kids about NG tubes as well as my daughter's speech/feeding therapists. If Kayleigh is going to have a feeding tube long-term (more than a few months, which she already has) it might be something to think about. The gtube has been a HUGE blessing to our family. It has made life so easy and so much closer to normal for all of us. The NG was so hard, especially when she would pull it out herself as a baby and I had to put it back down her at home sometimes 2-3 times a day. And the rash on her face from the tape was hard, too. Anyway, I know that you are doing the best you can, and she's a miracle and perfect as she is. Just know that the gtube can be a real blessing and a good first step towards good oral eating because they don't feel any tubes in their mouths or at the back of the throat to trigger a gag reflex.

Sarah Benedict said...

I'm so happy to hear an end is in site even if it isn't the path you would have chosen for Kayleigh. I don't know much about the trachs...is this something she has to have forever? If not, do they have an idea as to how long she will need it for? Or is this one of those things that is an individual thing where they just have to wait and see how Kayleigh handles it and how fast she heals? I can't wait to see her home in her own bed!

Sarah Benedict said...

I'm so happy to hear an end is in site even if it isn't the path you would have chosen for Kayleigh. I don't know much about the trachs...is this something she has to have forever? If not, do they have an idea as to how long she will need it for? Or is this one of those things that is an individual thing where they just have to wait and see how Kayleigh handles it and how fast she heals? I can't wait to see her home in her own bed!

Confessions From A Work-At-Home Mom said...

I've just recently started following your blog, and am filled with hope and joy each time I read your loving posts. I have a cousin whose baby boy was born at 24 weeks old right around Kayleigh's birthday, and since I don't get to talk to my cousin a lot, reading about Kayleigh's joureny is cathartic on so many levels. I hope you don't mind if I continue to "watch" Kayleigh grow. Many blessings to your beautiful family!

Anonymous said...

I continue to follow your blog. Thank you for keeping us posting on her progress. I keep your precious miracle in my prayers everyday as well as your family. I cannot imagine waht you are going through but it sounds like she is a fighter and has great parents. I know the trach is not what you wnated but as you have said if it is what she needs to make her stronger then that is what she needs. God will help her through this and she will be one step closer to going home. You and your family are so strong. Again I will continue to keep baby kayleigh in my prayers. thank you for the updates

The Michaels' Quads said...

How excitng to hear a end in sight!!! As we all know it will be wonderful to have your sweet Kayleigh at home. Speaking from experience she will really start to grow and thrive at home. There is just something about being home with her mom and dad and family. I just can not get enough of sweet kayleigh. Thank you for continuing to keep everyone so up to date becuase its not like you don't have anything else to do!!!

God Bless, you are an amazing family!

The Michaels

Blessed with Boys said...

Yeah!!! I know its not what you all were hoping for, but at least they have a plan! And that plan will help bring you baby girl home!! We have been praying for sweet Kayleigh and your entire family! Kayleigh is so strong and we wouldnt expect anything less, she has strong parents too!! Good luck and we look forward to that wonderful day when Kayleigh gets to come home!!

Anonymous said...

Patiently looking forward to Kayleigh's coming home party!

Anonymous said...

She is getting a lot more hair isn't she! Looks like it is a light brown or a dark blonde color. She is so cute and she loves her hands doesn't she!
I'm so happy to hear that things are progressing well - yes, that will be a day we all will be rejoicing with you when you get to take her home! She will never be put down once home! hee hee
Still praying and thinking of your precious miracle every day and I'm sure I always will.
Your site is always one I love to visit day! I love the new look too!

Anonymous said...

I've been following your blog since a mutual friend told me about Kayleigh. She is lucky to have such devoted, loving parents. I am praying for your little miracle. God bless you!:)

adrianna york said...

I wish you the best Kayleigh and I will be praying for you and your family I hope everything gose good with your trach surgery and you get to come home soon. I had a question when Kayleigh gets to go home will you still keep us all updated on how she is doing? I will keep you all in my thoughts and prayers and I hope everything gose good for you all.
Thanks Kim

hjg said...

Looks like your miracle keeps fighting. And now there could finally be an end to this journey and a starting to the next one. Life is always full so so many journeys and each one make you stronger. Sending some hugs to the little one!!!

Danyele Easterhaus said...

oh bless your hearts...seeing the light at the end of the tunnel for now is so nice. and i'm so pleased tht little precious pea is doing well. our prayers continue to be with you all...

Kate's Mommy said...

glad to hear more good news. Kayleigh is so sweet and cute...I have come to love that little girl and wait anxiously everyday to hear updates! I'll be so excited when you get to take her home! blessings and prayers to you and your fam!

Kristi said...

I'm really glad you have a course of action now, and having an end in sight of when she can come home...amazing! You have a true little miracle there in Kayleigh. I discovered your blog a short time ago, and the other day read back to the beginning when Kayleigh arrived. You both have such strength and wonderful faith, and your love for each other, and Kayleigh, is inspiring. May God continue to richly bless you and your family. Thank you for sharing your story.

Anonymous said...

Dear Freemans, I can not even tell you how I stumbled upon your blog but I am greatful I have. Your spirits are amazing and I pray for the day you will be able to take your little girl home. It is a day you will cherish forever. I know in no way can I ever come close to understanding what you and your family are going through but please know you are in my families prayers and are very close to our hearts. Our Kaylie was born 3 months early as well due to IUGR and an incredibly severe case of preclampsia on my end. 3 1/2 months in the NICU looks so small in comparison to what you are going through! Your little girl is a miracle. She is a miracle that God gave two amazing people to take care of. I was told special people are given his most special children. Stay strong and know you have a huge team praying for you! Many of which you don't even know.

4 Lettre Words said...

As my sweet mother-in-law would say, "That is fannnntastic!" (You gotta say it with a NY accent to get the full effect.)

We will be praying for an uneventful surgery and a speedy recovery.

Penny said...

It sounds like Kayleigh is on a "new" plan. I hope that this plan allows her to shine and grow without so much work. The thought of bringing her home must be absolutely overwhelming.

We pray for your little miracle every night. She has come SO far!

SometimesSheWhispers said...

She's so sweet, I could just kiss her little head! Can't wait to see her "on her way home photos!"

LJR said...

I have been praying so hard for Kayleigh. Sorry to hear she needs the trach, but I really hope it helps. If you need anything or have any questions please do not hesitate to contact me (you can through my blog, and a email address is on it as well)

My daughter Emma was trached at just shy of 2 months, she is 4 now, still trached so I am a bit of an "expert" if you will. Emma was about 4.5 lbs when she got her trach.

It is scary, but not the end of the world.

I am so glad this just gets her one step closer to home. I remember those long NICU days myself and will be so happy when you guys get all this behind you and have fun at home!

Anonymous said...

I have been following your story for a couple of months. Your Kayleigh is a little fighter, She is here for a reason. My son Zachary had a Kidney Transplant when he was 11 months old. We spent the first year in and out of the hospital not knowing if he was going to make it. He is 5 years old and has had over 30 surgeries and is in Kidney failure again. In a couple of years you will look back and wonder how you did it. You guys are great parents. Kayeigh choose you as her parents, because she knew love and strength that you would give her.
Lots of prayer's for your little Kayleigh and don't forget mom and dad

Stacey Elsenpeter

Anonymous said...

My daughter got a trach in december (ex 24 weeker)and she was ready to come home in 2-3 weeks! it just took so long to learn her care of changing the trach, suctioning, cpr and getting nursing care set up!! The turn around is AMAZING!! You will be so happy to just be able to pick her up whenever you want! And she can finally wiggle all around and play with toys! No more tube! If you have anything you want to ask us feel free to email me at raxraxx@hotmail.com!
GO Kayleigh!

AWC's Girls said...

I just came across your blog and wanted to say that I am praying for Kayleigh. I also have a Kayleigh Ann (without the E!). She is 8. I told her about your baby girl and she wants to use her allowance money to order a bracelet. She said a special prayer tonight for "little Kayleigh".

Anonymous said...

Wow, Kayleigh has come so far! We'll be praying that her trach procedure goes well.

Big hugs to you all!

Stephanie said...

Okay guys,

The doctor's have a plan. Check.

The parent's are prepared. Check.

Kayleigh was consulted.......

Uh-oh. Did you forget to ask Kayleigh if she's okay with it, if not, I'm sure she'll let us know.

Still praying for you all, with much hope for Kayleigh.

Stephanie in Moyock

N said...

She is so beautiful in these pictures, she looks so peaceful when she's resting. I'm happy for you and remember, people heal completely from having a trach every day, and go on to be big talkers throughout the rest of their lives :)

Courtney said...

I have been following your blog for quite a while now. I just want to say you baby girl is amaizing and so strong. She will make it home, she is a fighter!!!

Sara said...

While I don't know much about trachs, I know it sounds a bit scary. But I also know it means she is closer to coming home - so that is a great thing!

Kayleigh looks just beautiful lately - her color looks good and I love how she always has those little fingers in her mouth!

I cannot wait for all of us to be invited to her coming home party - cyber space style!

Katie Anderson said...

Isn't our Lord and Savior awesome? Here we are standing together in prayer and we see Him at work weaving together the life of your beautiful Kayleigh. I am excited to see home in your sights, I can't even tell you how excited that makes me. We continually pray for you and know that Our God is bigger then all things, and He alone will deliver Kayleigh into your arms and out of the hospital. Just wait for the day that you bring that little car seat back to the hospital and take Kayleigh home to her beautiful pink bedroom.


Katie, Steve, Sidney & George

K Anderson said...

Your post just made my day! I have been following your story since before Kayleigh was born and have suffered every heartache with you and rejoiced in every triumph. I will continue to pray for your family and Kayleigh's care staff.

Anonymous said...

I love her pictures and since she found her fingers she can't keep them out of her mouth.

Rachel Dominguez said...

I am so glad to hear that a decision has been made! I prayed very hard for this last night!

I hope that she will soon be home with you guys and her brother and sister who have to be getting so excited to have little sissy home!

Love and Prayers ALWAYS!


Erin said...

I am excited that hopefully we have that light at the end of the tunnel. I know your sweet pea can endure so much, so my hopes and spirits are high for what I want to call the last big hurdle before she comes home. Praying for your little angel. Keep us updated. And again, give Kayleigh plenty of xoxo's.
The Polleys

Sabrina said...

I hope you do take another picture! It'll be neat to see. I know my husband was 2 lbs and his parents (back in 77) took pictures of comparison as he grew. Thoughts and prayers as she goes through this next step with the trach.

Miracle Monster Mommy said...

I just want to say that I just recently found your blog and am praying for Kayleigh. We are at the beginning of a very similar situation. I have one son at home who was 10 weeks early and IUGR at 1 lb. 11 oz. He came through the NICU practically unscathed - and is now 4.5 years old. We tried for 2 years to get pregnant again and finally did. I am now 28 weeks pregnant and have been in the hospital for almost 4 weeks. This baby stopped growing around 21-22 weeks and is weighing about 1.1-1.2 right now. He has had absent flow since 22 weeks and my fluid is down to 3 cm. He is on continuos monitoring and I get the BPP US every day. He continues to hold on and each day proves the doctors wrong. We are seeing more heart decels now and know it is getting close. Reading about Kayleigh's beginning it just seemed to be what I am going through now. I have enjoyed reading through her progress. I know she has gone through a rough patch here - but hope and pray that the trach helps her and gets her home where she belongs! Best of luck to all of you!

Carissa and Baby Cookie

erika said...

I have also been following your blog for quite awhile. I am a NICU/PICU RN and have seen so many little miracles just like Kayleigh!Good luck with the trach next week. You guys will be champs with the trach and vent in no time!! Your nurses will teach you everything you need to know-you can do it!!! Keeping you in our thoughts and prayers.
hugs from IL

Anonymous said...

I've been following your blog for months and continue to pray for Kayleigh everyday. She is a beautiful little girl that has overcome so many hurdles in such a short time. She is a fighter and will get thru the next hurdle that will bring her closer to coming home with her family! Your strength amazes me everyday!
Baltimore, MD

Anonymous said...

i just stumbled across your blog, ur story is very similar to my best friend's. her little boy was 10 weeks early due to precalmsea (i have no idea how to spell it) and he was in the hosptial for a while. now he's a busy little 1 yr old, crawling and i think she said he was even walking. i'm sending lots of good ju-ju. the same i sent her during her trial.

Anonymous said...

Praying for the best for Kayleigh as always! Will it be a permanent trach? And how long will the surgery be?

Anonymous said...

More battle wounds for the precious warrior of God to share her story!

Anonymous said...

Adam & Aimee -
I've only commented here a few times, but I've been reading your blog for several months now, and not a day goes by that I don't pray for your sweet baby girl. The end is in sight, and I can't wait for Kayleigh to go home to her pink and brown room (my 9 month old daughter has a pink and brown room too - we must be kindred spirits!!) Hoping and praying that all goes well on Monday.

Anonymous said...

I just wanted to let you know that you and your family have been in my thoughts and prayers since I began following this blog. I too am a mother of a preemie (born at 29 weeks), he had his ups and downs but nothing compared to what you all have experienced and I couldn't imagine having to go through it. You are a true inspiration, and if someone didn't believe in God before this...this is TRUE PROOF. Kayleigh is precious and I will continue to pray for her every night! This April I will be walking for the March of Dimes in honor of my son, and Kayleigh as well. Best of luck to your family.

Amber said...

I am so happy that you have some peace in knowing what is next. your family continues to amaze me and has brought me so much closer to God.
I have wanted to tell you thank you for sharing your story, it really has been an answer to my prayers. I was asking for a way to be reminded that I needed god in my life.
I show my 16 month old baby Kayleighs picture everyday. He can say her name!!!
Love Amber (Las Vegas)

Stephanie said...

I came upon your story on another blog. What a remarkable family you have!!

I will be keeping Kayleigh in my prayers!!

Anonymous said...

I am so gld to hear that they have set and date and soon this will all be behind you. She is such a miracle from the Lord!!! I know this will go smoothly and she will be at home soon in your arms where she is meant to be. I am praying for you all the time. Thanks for being such an inspiration to me.

MommyLovin2 said...

We are continuing to pray for your sweet Kayleigh. I just LOVE going to your blog and seeing updated pictures of her! My 4 year old daughter still gets on her knees at night next to her bed and says a prayer for "Baby Kayleigh"....

The Fullers in Houston

Tanya said...

The trach, even thought it is not what we were hoping for will bring Kayleigh a lot closer to going home. From what I gather this airway complication came out of nowhere suddenly and in my experience unexplained problems that come on quickly and suddenly tend to disapear in a similar fashion. Kayleigh is an incredible child you will have her home before you know it and in better shape than you expect.

Al's World said...

I have been following your blog and are uplifted by your thoughts and actions. What a wonderful little girl you have. I know you are absolutely ready to have her home, to hold her, cuddle her, feed her all the "normal" things. This trach will put her there one step closer! I knew a little boy who had a trach, it was part of his life, he didn't think anything of it, and after awhile they were able to remove it. He was an active, wonderful, kind little boy! I will pray for a smooth procedure and continued progress!



ur blog & kayleigh's story has changed my life. praying for you & your family!

Anonymous said...

How sweet and beautiful your little miracle is. Thank you for sharing your joys and struggles with the rest of the world. I think of you and your family each day. All the best to you. Darrell

Unknown said...

Gosh she is beautiful