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 :)
61 comments:
I agree. Love makes the world go 'round!
And again, thank you so much for letting everyone in your life! My son is estatic that Kayleigh is doing so well. One of my twins walked in and asked who she was.
She looked so different from the last pictures they saw of her that they didn't recognize her!
Congrats! We are keeping up our prayers for ALL of you.
Love from Utah!
Oh, and P.S. We hope all you have to worry about soon is your hair!!
Awesome job Kayleigh keeping fighting and we will kep praying.
o my gosh that video of her sucking her fingers is the cutest thing ever!!! I am so glad she is fighting so hard!! Keep it up girl you will make it. How are mommy and daddy doing after all the crazyness? I hope you are feeling better about the situation. And my vote is that her hair is dark brown :)
Those videos were amazing! How great to see the product of so many prayers! Kayleigh looks so wonderful...peaceful and alert now!
Thank you for sharing the videos. WOW! I just had tears - Kayleigh is absolutly BEAUTIFUL!! She looks so sweet sucking her finger....
I am in complete awe just seeing what has transpired in the past 2 weeks - amazing!!!!
Amanda - Spartanburg, SC
Just amazing. It is just a miracle unfolding before your eyes to see this amazing testimony to God's strength and power. He has truly shown through Kayleigh that through him and with prayer anything is possible. I continue to pray that the steroids will work and that she will be off that vent. soon and in Aimee and your arms again. Thank you for sharing Kayleigh's story with the world and lets continue to show God's will through Miss Kayleigh's story and that faith, hope, love, and prayer will prevail.
God Bless you Guys.
Amber
Your video's are such a good example of the power of all of our prayers for Kayleigh - what a difference two weeks makes!
Kayleigh's button is now on my Myspace page - and I posted a bulletin asking everyone to click the link and read about this miracle baby and say a special prayer for her to heal and grow and be extubated on Saturday without any problems!
I fed my grandson his bottle tonight and just stared at him - thankful that he is healthy and wishing and praying for you to have that same experience with Kayleigh in your home in the very near future!
Oh my, I have chills. This is completely amazing. Unfortunatley I have not had a chance to look at the videos here at work but it is on my to do list tomorrow.
Kayleigh you are so amazing. You never cease to show me strength and how it comes in the smallest of packages. You rest and grow and once you are home mom and dad are going to be able to hold you 24 hours a day if they want.
Adam bald is beautiful (I'm married to a bald man! HEHE!)
Adam and Aimee I hope that you guys are a bit relaxed and I think that this weekend you guys need to have a special date after you go see Kayleigh.
I am going to create a myspace account just to pass on to others the story of Kayleigh.
With much love and prayers,
Jenn
P.S. I LOVE TWITTER!!!! Thank you Adam and Aimee for finding that site.
Thank you for sharing the videos. God is so good and I am blessed to be able to watch your Miracle. and yes, her story does make me hold my sweet Katelyn (she's only a few weeks older than Kayleigh) a little tighter each night! Thanks again for sharing, Kayleigh is always in my prayers!
Adam and Aimee, I have been following Kayleigh's story since the beginning and this is my first comment ever. I want you both to know that we on 9B (Aimee's old home haha) are ALWAYS talking about Kayleigh. I actually told a patient tonight all about her and showed her the website. She said she would be looking for her when she was down there. Your family is an inspiration to so many people, and especially the ones on high risk ob! You give our patients hope and faith. God bless you all, and tell Kayleigh 9B said to keep up the good work!
Dana Nealy (nurse aide)
Kaleigh has beautiful fingernails
She is looking GREAT!! God is so good! I just wanted to share with you what my little guy is drinking. They changed the ratio of powder to water. We make 23oz. of water with 1 cup of formula (this makes about 10 bottles) then we add 3 and 3/4's tablesoons of polycose powder and 2 teaspoons of veggie oil! Our son has a hole in his heart and burns more calories than he takes in. This combination makes his formula 30calories per oz. The veggie oil is also supposed to help with nuro. development! The nutritionist at our hospital decided to put him on this mixture. Its workink. He was born 3lbs and now at 6 months old he is close to 11. He has other special needs too, down syndrome, preemie, substance exposed (he was adopted by us), hearing loss. If you can find time in your bus day please pray for Malachi. He has a upcomming major surgery to repair his heart! Thanks. We are praying for Kayleigh!
Thank you God! She looks and is doing so wonderful! No more earmuffs either so that in itself shows us just how much she has improved!
Keep it up my little cyber baby.
With love from Southern NH!
Wow, those videos are amazing! She has made such improvements over the last 2 weeks.
I am in awe of your strength through this whole thing with Kayleigh. My son had many "simpler" problems at 6 weeks old, where we spent many days and nights in hospitals. Many of the tubes and wires are so familiar and bring back memories. I remember being exhausted after 24 days in the PICU. To watch and read your story that has gone on for 6 months touches me so much. You are so strong, and your way with words are wonderful.
I love Twitter! Anything you post on there is great. I catch myself wondering many times through the day what she is doing. The simple texts all the way through the procedure updates are much appreciated. THANK YOU!
I continue to pray for sweet Kayleigh. God Bless.
Val
Thank you for sharing the pics and videos! Kayleigh is such a precious baby! We are praying that all goes well Saturday! Funny..you are losing hair, but Kayleigh is growing hair! Before you know it she will have pony tails and big fluffy bows! Well..she is a girl and she does need hair more than you do!! Sorry Dad!
Again, thanks for sharing her story with the rest of the world!
Way to go Kayleigh girl!
From Randi and Family in MS
Thank you so much for posting these videos. She is doing remarkably. We're continuing to pray for Kayleigh every day!
I'd also like to ask the prayer warriors to pop over and see another heart baby's blog. Her name is Lindsay and her blog (Lindsay's Heart) can be linked from here. She was born in June with Hypoplastic Left Heart Syndrome and is currently waiting to receive a new heart. Kayleigh's prayer warriors are amazing and I'd love if you could add Lindsay to you prayers as well.
Thanks
Aimee Gillespie
Michigan
She is an insparation! Even at her worst she still fights. Since following her story and her having a near death expierence, it has made me realize how truly precious life is. I had a near death expierence before xmas too. If I didnt go to the er I would have died at home in the next day or two. It puts a new outlook on life! My new motto is "The truth is you dont know what is going to happen tomorrow. Life is a crazy ride, and nothing is guarenteed."
Jj.
OMG she is soo precious!! I love the finger video!! She wants that tube out so she can really enjoy that finger!! Priceless!! Still praying in KS!
Hearing all those beeps makes me remember the 10 days we spent in the PICU when our baby was 6 weeks old and it's so scary. We pray for you daily. Good job staying positive, I can't imagine going through what you're going through and be as positive and encouraging as you are. Bless you!
We will continue to pray that with each passing day God will strengthen and bring complete healing to Kayleigh! Each day I read to see Kayleigh's progress and thank God that He is still in the miracle working business. Stay positive and trust in the Lord! Keeping the faith in New Braunfels, Texas.
WOW!! She looks so good, praying for your family daily. Just remindes me so much of our own little preemie almost 12 years ago. Man I feel old. We never felt closer to God then when we were in the hospital with our little one pounder (Kayleigh was just 9 grams smaller)and your story has renewed that feeling in me. Thank you!! She will get there, and be home before you know it, and 12 years from now you will be saying you just can't believe how wonderful things turned out!! Our Madison never did well with the fortifier, she only gain one pound a month until she was 18months, yes at 18 months she only weighed 18lbs. Today she is almost 12 and weighs about 70lbs. but honestly you would never know she started out so small. Actually we look at it as a blessing cause she just eats whatever she wants and maintains this great little figure!! Can't say as much for myself.
God Bless you all!!
Sheila in Colorado
So happy for you that she's making progress! What I'd like to hear about is what the dr's say her life will be like once she is allowed to go home! Will she have any lingering problems, such as asthma or anything related to her lung pressures? Any heart issues? I hope not, but it's entered my mind that she might...
I am so excited at how well she is doing! God is so good! Praying ya'll have a wonderful weekend...
Isn't twitter awesome! I have had it for a while and I am addicted!
I loved the videos...well, the first one was sad...but the rest, seeing her so happy and content, makes me thrilled for her.
It's way too familiar of a sound, those beeps...I remember it well.
Love you guys, have a good weekend!
I do believe in the mighty power of prayer. So glad she is doing well!
Still praying in OK, m
I love twitter! Keep up the progress Kayleigh we all love you. Freeman's we are still praying that everything will be grreat on Sat.And Kayleigh will go home soon. God Bless
I believe in you little lady. I am so happy, proud and always remember to say a prayer for your family. even your hair adam...lol.. we have a saying (in spanish) may god mulitiply your blessings. and I hope he does... christina
AWWWW!!! Kayleigh gets cuter and cuter as the days go on! Thank you for sharing the videos. The "NICU sounds" are so familiar. We are continuing to pray for your little miracle. She's a fighter!
Much love and prayers,
Nate, Kim and Evan Smith
www.caringbridge.org/visit/evannsmith
P.S. When I update Evan's site next I will put a link on his page to Kayleigh's...if that's okay with you all.
I will pray extra hard tonight that the steroids will help Kaleigh's lungs to not collapse after extubation. Kaleigh's strength and will to live is truley amazing. I know God's hand and many prayers are playing a huge part in her progress, but she definately has a very strong fighting will to live!
The difference in the 2 videos is so powerful. I can't even imagine the roller coaster ride you and your family have been on. Many prayers have been said for you two, and Allison and Brandon as well. Kayleigh is so fortunate to have been born to such a loving, strong family.
I think of you all several times a day, and my prayers will continue for you all.
Pat
This is such amazing news! We are so excited for her. She is always in our thoughts and prayers. God Bless!
oh my goodness..how is it possible that she gets cuter and cuter everytime I see a new picture of her! Keep up the great work Kayleigh...we're praying for you everyday!
sorry I haven't commented as much, I can read from my phone, but for some reason I can't post..I don't know why.
praying that she can extubated soon and safely!
Sarah, Chris, Helaina and Ava.
I've been following Kayleigh's story for awhile now. What an AMAZING little girl you have, she's an inspiration. I actually live very close to you, which is what caught my interest in the first place and drew me into Kayleigh's story. I've linked you on my blog, I have a lot of readers with special needs children and preemies and I think they would find the same inspiration that I did in Kayleigh's story. Thank you for sharing your journey, I'm praying for Kayleigh every day.
It's an every morning ritual now that I check to see how Kayliegh is doing. I am so amazed at the wonders God performs and she is definitely one of them. Kayleigh you are a beautiful and a precious gift from the Lord. Hang in there sweet one. Mom and Dad you are terrific and your dedication is heartwarming. Kayleigh is so blessed to have you as parents.
Know that your are constantly in my prayers.
Debbie
Columbia SC
The video of her sucking her fingers is so cute. I have a 1 year old who is a finger sucker. She does it for security. Never would take the pacifier. Kayleigh looks great.....I pray for her as well as my 1 year old does when we pray together and hold hands, she loves to sit on my desk with me and look at kayleighs pictures. Take care all of you,
Kristie
Kayleigh your videos brough tears to my eyes, you are such a strong little girl! A true miracle! Adam and Aimee thank you for sharing your journey will all of us. I know that I hold my Kaitlyn who is 4 months a little closer each night. She to spent sometime in the NICU but we have delt with nothing compared to you. Our family continues to pray for you!
Laurie in SD
Thank you so much for sharing her story with all of us daily. I look forward to going to my computer to check on our sweet girl. I feel so close to her, yet I am in Alabama. She is such a miracle and your whole family are a wonderful Godly inspiration to us daily. I thank God for you and thank you for letting us watch and pray and learn from your and her journey. Keep the faith. Thank you so much. I pray and think of ya'll daily.
Kat D.
It is so amazing to see how many changes Kayleigh has gone through over the past several months. Maybe I missed it but did you ever tell what CHOP decided after seeing the scan? Are they going to leave her where she is for right now? She is so beautiful and I can't wait for the day when you say "She's coming home."
Tiffany in NM
Oh my gosh. This little girl is such a trooper!
I've been following her story for a few months now, and this little girl has helped me renew my faith with god. I'm getting confirmed in four months, and I was concerned when I started the confirmation process, that maybe I didn't believe in god, or I didn't know what I believed. But after reading this story, I have prayed much much more. Only being a freshman in high school this is pretty big for me. But she is just amazing. The thing about her finding her hand and sucking on it...I think that is one of the sweetest things that I have ever heard.
I will keep praying for her every day!
~Susan
Oh my gosh. This little girl is such a trooper!
I've been following her story for a few months now, and this little girl has helped me renew my faith with god. I'm getting confirmed in four months, and I was concerned when I started the confirmation process, that maybe I didn't believe in god, or I didn't know what I believed. But after reading this story, I have prayed much much more. Only being a freshman in high school this is pretty big for me. But she is just amazing. The thing about her finding her hand and sucking on it...I think that is one of the sweetest things that I have ever heard.
I will keep praying for her every day!
~Susan
Kayleigh I'm sitting here looking at the video's crying to GOD thanking him for letting you be the little angel you have become I love how you are being able to bit your finger's. You keep fighting sweat heart and get better and your so close to get the vent off and be home with your family.
We will pray that saturday goes a lot better and the dr's will be able to remove the vent and not have to put it back on. You keep eatting good and getting strong so we can see you in your new room at home.
Also mom and dad if you could e-mail me your e-mail I would like to give you pictures of my little ones, and my six year old wants kayleigh to have her picture also.
Thanks,
Holly
lbh_3_2006@yahoo.com
You daughter is a angel like my little 4lbs angels
take care its getting happier for everyone
Your daughter is a angel set from God and I just wanted to say God bless you and your family and I just wish you the best. You and your family are in my thoughts and prayers from Kim and Adrianna
I have been following Kayleigh's story with interest. Her battle seems very similiar to one of my daughter's "classmates" (a roomy during NICU).
When Kayleigh graduates from hospital pls allow her medical story to be shared. Pls insist that her doctors pass along Kayleigh's results & successes worldwide to the medical community. I have heard many times from our doctors in Brisbane, Australia that any form of pulmonary hypertension is terminal. Kayleigh is showing that is not necessarily the case. Parents need to be given some hope. Doctors need to be given some hope. Kayleigh is that hope.
Sorry the extubation didn't go as planned. View the trach and g/j tube as tools to get her home sooner that without. Kayleigh certainly wouldn't be the first micropreemie to go home with this combination. Chances are that she will grow a lot faster if she doesn't have to work so hard to breath or eat. God's plan is perfect and obviously Kayleigh was sent here to do great things! Trach's and tubes are just temporary things in the grand scheme of things.
Prayers from Oregon
I am so sorry to hear that Kayleigh's extubation didn't go well today, we are praying for her.
When I first started following Kayleigh's story I called my friend who is an EQ nurse and asked her about pulmonary hypertension, from her experience of the last 5 years in NY and Florida she feels that this disease is very much manageable she has seen many babies do well with treatment. I think it is clear that Kayleigh is a fighter and with God's grace, she will come out a winner.
As always, thanks for the updates. It is amazing to see how much better Kayleigh is and sucking on her fingers is precious...love it. I hope she continue to improve even more every day and will have the tubes removed real soon! Prayers every day to all of you...Nana C.
Praise God! Is it possible to say that enough when it comes to Kayleigh?
Freeman Family,
I have been following your story since November, however I have never posted before. I found your sweet story as I was searching hopelessly for insite on preemies. My nephew was born on November 6th, at 23 weeks gestation. It is only by the grace of our Heavenly Father that he is here today, so you know the rest of the story in-between. You know well the valleys of NICU, but we are praising God that he is here today, even in renal and liver failure, he continues to amaze us. I have enjoyed reading about precious Kayleigh and feeling the true love of God through your posts. I appreciate you being such faithful prayer warriors for your little angel. I know God is going to honor you for it. I know you're extremely busy, but the next time you're praying for another miracle...please remember my nephew, Reed. I pray God continues to be as good to your family as he's been thus far. www.caringbridge.org/visit/reedputman
Sweet little Kayleigh, looking better! I know hearing a trach is discouraging news for you, but if she does get a trach, these extubation trials are soooo much easier, she doesn't have to go through the trauma of re-intubation, just have to be popped back on the vent. As always, prayers for the family and Kayleigh, she is so beautiful! Leslie & Family in CT
Hey there! Found you guys through Elyse at Following Him. I have been so touched by your story and wanted you to know that I am going to follow your blog as I pray for Kayleigh and your family. I am also a daddy blogger. There arent very many of us.
Please feel free to visit us and follow our story as well.
Our prayers are with you.
I agree, I wish everyone understood the importance of expressing and showing their love towards their children as well as not taking things for granted.
Kaleigh looks awesome. What a tough little cookie. The first video brought back some bad memories for me, but I am glad that you were able to share it and show others what these little ones go through. It is amazing the strength they have.
You all continue to be in my thoughts and prayers.
Hopefully Kayleigh did ok last night even though the Panthers didn't end up winning.... :)
With love from Southern NH and a huge Pat's fan!
Hopefully Kayleigh did ok last night even though the Panthers didn't end up winning.... :)
With love from Southern NH and a huge Pat's fan!
Gosh, she is a beautiful little fighter! Still praying for your sweet Angel!
Somehow I found your blog today...don't remember how, but it was while I was UPDATING our PRAYER LIST on our blog (upper right side-bar). I know that this was NOT a coincidence...but the LORD!
I have added Kaleigh and all of you to our PRAYER LIST...and we will all be praying.
~Blessings,
Jan
Kayleigh is in our thoughts regularly - our little boy, Alexander, was due about the same time she was, and born about the same time, and we read about Kayleigh when Alexander is doing well.
A trach is no big deal - frankly, it's the best thing we ever did for Alex, because he's so much more comfortable, and he doesn't work nearly as hard to breathe. While his struggles are slightly different than Kayleigh's (minor PH, major BPD), 2 months of the trach and he's nearly caught up on his other developmental milestones.
http://sprog.quicksilverdragon.com is his blog.
We are keeping you in our prayers daily!!!
Our family is from North Carolina....you can check out blog...Baby Michael also keep Kayleigh in his prayers.
Love from Arizona
http://michael-wayne3.blogspot.com/
How cute is Kayleigh sucking on her little fingers. That video is precious! Hope things continue to move in the right direction. We're praying for ya'll as always!
P.S. Hope you got our Christmas card. Adrian mails them from his office so I always wonder if he gets them all out! I'll get him fully trained one of these days! Ha!
Lots of love, The Nadeaus
My first time at your blog, came by way of Leslie who has a link on her blog. Your baby girl is absolutely ADORABLE!! You have my prayers for her to grow healthy and happy. God's Blessings are with you and her!!
Kayleigh looks amazing then ever=]I have been praying for yall for so long and your always in thoughts and prayers! I will continue to pray for Kayliegh's comfort and healing.I will be praying for the both of you!!! Ya'll are amazing parents!! God has blessed you with such a beautiful daughter!!!!
P.S. I ordered a bracelet about a month or 2 ago!!! Im excited to get it in the mail,so my family can send in a picture for you and percious kayleigh!!!
i know what you mean when you say why did they not give her the vaccines when it was the scheduled time. i am a nurse and i know that you shouldn't give them a vaccine if there sick, it might make them sicker you just never know. but if you say she was almost well enough to go home a few times then there might have been a few underlying issues. so glad to see the new pics. she will be up running around in no time, she is so beautiful and will definitly get through this.
have a great day!
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