Look who has a big girl bed!!!
Kayleigh is doing great! Aimee and I both were beyond excited to see Kayleigh looking more like her normal self today. She is recovering really well from the Tracheostomy procedure and her belly is starting to come down little by little.
They still have her on 3 mls/hr, but she is tolerating it very well, so they may increase that a little more soon. I was shocked to walk in today with the respiratory nurses giving Kayleigh a workout with the CPAP, which is a step up from the vent. They were trying her out for fifteen minutes to see how she would do without the vent and she did great. I believe they are going to try it everyday and increase her time off the vent. It would be great if she can come off the vent completely and go home on CPAP. They both hook up to the trach, so it really isn't a whole lot of difference on the exterior, just different when it comes to pressure controls.
Overall, Kayleigh is making good progress. Depending how her belly is and her ability to tolerate her feedings, will determine whether or not they try feeding her a bottle or put in a g-tube directly in to her belly. After that, the doctors are debating whether or not to start weaning her off the Flolan for her Pulmonary Hypertension. The ECHO that was taken the other day still showed her pressure in the high 60's, but she is not having and nasty episodes so the doctors are pleased with the results.
Honestly, I don't see what else needs to be done. I just hope these minor hurdles don't take forever and we can start planning on bringing her home. Let that be our prayer request for the next week or so. Pray that things will continue to progress in a direction that will FINALLY bring our little miracle home. What a glorious day that is going to be!
Thank you all for your wonderful comments. They are so uplifting and they certainly keep us smiling day after day. Everyone has been so incredible and I wish we could go around and give you all a huge hug for the love you have given us. Thank you so very much!
God Bless,
83 comments:
Wow! She looks so great! Praying that she can finally come home SOON!!!
Awesome, awesome, awesome!! Kayleigh: YOU GO GIRL!! :)
Praying for you guys!
That is amazing. This is the first time I have ever commented to you guys about anything but please know that I have been following your blog for a very long time...I think about and pray for your whole family daily. Also just wanted to let you know what an amazing inspiration you have been to me. . . Thank YOU.
What a beauty!!!! Praise the Lord that she's doing so well! GO Kayleigh!!
I love the little bracelet she's wearing, how cute!
Jessica ;-)
My was a beautiful daughter you have. She is so precious. I just found your blog the other day and my eyes have been filling with tears, prayers and praise. Prayers are going up for continuing movement in the right direction.
Bless you and may the lord give you continuing strength, love and peace.
Stephanie in Mo.
What lovely pictures to see Kayleigh in her Big Girl Bed! Your post and your darling little Kayleigh have brightened what has been a very dark day for me - thank you for sharing your Precious One!
Please give her a big kiss and hug from "Auntie Crystal" for me!
She looks ADORABLE!! When Max and Tyson had their trachs put in they came ahead in leaps and bounds too!! I seemed to really help the Malacia - before hardly any time passed they were on CPAP then NO vents just O2 via the trach when they were sleeping! They had feeding tubes and they also seemed to help a lot BUT if Kayleigh needs to go that route - make sure she gets tastes of food in her mouth - we didnt do that with the boys so getting Tyson to eat when we were looking at getting the tube out was a nightmare - he didnt like anything going near in his mouth as not brething thru it had made it very sensitive!
Take care Family Freeman - So many of us here in Oz are thinking of you all!!
Way to go Kayleigh! Ya'll, she is so so so beautiful. I will be praying for her to come home to her gorgeous room soon!
She looks absolutely beautiful...what a miracle baby!! Love and hugs....
Kelly
Kayleigh is so beautiful! Good to see her looking better. Still praying!
God Bless,
Jennifer
OMG!!!! HOW EXCITING! I knew when I read that post I was gonna see her in a crib! Go Kayleigh Go!!! I'm about to start doing the 'happy Kayleigh times" dance!!! I screamed for Ryan across the house to get him to come see Kayleigh being a big girl!
On another note, I got the onesies from your parents. That was so sweet of them. You all have been blessed with wonderful family and friends!
In Christ,
Rachel
WOW That is really awesome that they are thinking of taking her off the vent soon!!! I'm so proud of Kayleigh and she's not even my daughter!! I remember the day we brought our little guy home from the hospital!! I can't wait for that day for your guys sake!! It's the best feeling in the world and I know it was the best day of my life and you all definitely deserve to have her home safe with you. Well congrats and keep it up Kayleigh we are all praying for you!! Take care and keep us updated can't wait to see the news clip Monday!!!
She's so cute! Sounds like she's doing quite well. Glad to hear it. Take care of the sweet angel. :-)
I have been following your story for awhile and just never seem to have time to actually post a comment. We are praying for your family daily and special prayer requests at church every Sunday.
I do have a question though. Why is Kayleigh always laying on the same side? I understand her tubes and stuff likely make it so she has to, but isn't it going to mess up her vision always looking out of the same side of her eye? I'm confused (if this was mentioned before I'm sorry I haven't read all the way back to see if this was posted about in the past).
The picture of Amy kissing her brought tears to my eyes. I can't wait until she is home safely with you guys!
Kayleigh you look absolutely beautiful. It is so wonderful to see your little face, you are looking great. SIdney is also healing well from his surgery and wanted me to tell you Hapy 1st Valentines Day. We love you.
It is funny that you mention that because you should hear me when I am taking the photo. Kayleigh is actually so excited and she can't stop looking at Mommy who is over in that direction. I had to wait for the perfect time when she would look in my direction to take a photo.
With the trach, she has to lay on her back, but is also placed somewhat on her side so her head isn't mishaped. Unfortunately, there is only so much you can do and we may have to re-hape her head carefully when she gets out of that bed.
Soon she will be able to sit up more with her boppy, but they don't want to risk injuring her throat where her skin is still tender from the surgery.
I hope this helps answer your question, but don't worry, Kayleigh just loves her Mommy more than me or she tries to push my buttons by not looking at the camera :) lol.
God Bless,
Adam
I am so happy to see Kayleigh looking like her old self, and that she is doing so well. Seeing Kayleigh in a crib, and the picture of her and Aimee brings joy to my heart! I will pray that she continues to improve day by day, so you can take her home very soon.
Pat
My first thought when I saw today's pictures was God is good. She looks wonderful!
Many continued prayers for her and your family!
Wow, she looks fantastic!! Keep it up Kayleigh!!
She looks amazing! I'm really hoping she tolerates everything and comes home very very soon!
You CAN do it, Kayleigh!
Hi and congratulations Kayleigh! You Angel...you are doing awesome and my little Gabby and I are praying for you and your family sweetie! I know when Gabriella went into a "Big Girl bed" we were so excited...it's a BIG milestone for a little peanut! Our prayers are always with you...someday I'll get the hang of this and be able to post our little one's story too. We have been following you since gabby's 1st birthday 8/22 and I haven't navigated my way through here! Our LOVE to you on Valentine's Day Angel! God Bless You All~~Tha D'Agostino's..Stacey Pat & Gabby Grace XOXO
Praise God! She looks beautiful. I love the look on her face when her mommy is kissing her. Priceless. :) Praying for great things to come! You guys are amazing.
She looks so different then the last pictures, She really is coming along well and getting better day by day...She looks so Happy I will keep her in my prayers and hope that you get to bring your little miracle angel baby home soon...
Awww, what a happy post! Kayleigh looks AWESOME! Going home is coming closer and closer! I'm definitely praying in that direction...
Oh, what a fantastic surprise!!
Hope you all have a sweet Valentine's! XOXO!
Good Job Kayleigh we love you!
The Cudabacks
I just love the picture of Aimee kissing her. Kayleigh looks so calm in that picture! Praying for steady improvement so that we are heading home soon!
I love waking up to great news! So glad to her our girl is doing well and continuing to progress!
Love to you All!
Kristine
I can't believe this is the same Kayleigh from just a month ago!! She looks so much more playful and definitely happier to have that yucky tube out of her mouth!! She's come such a long way - we're so proud of her!! Hugs and kisses from KY :)
Oh my gosh I love that picture of Aimee kissing Kayleigh and actually being able to see her face!! She sure loves her mommy!
Happy Valentine's Day sweet Kayleigh!
Adam, I hope you all are able to do a little something for yourselves today. You all deserve it!
You have an amazing little girl! I hope you do get to take her home soon! Let's all pray that God will make a way to take her home in HIS time! She's a fighter! She's strong. She's definitely beautiful!
God bless all of you!
Happy Valentine's Day to you (Kaleigh) and your entire family!
She is beautiful.
Not sure if anyone else has noticed this, but you know how babies "looks" (facial) change almost daily when they are newborn/infants? Kayleigh's beautiful little face never seems to change. I think she's a little version of her mommy, so maybe she will have to have a nickname...."A.J." (for "Aimee, Jr."):) (~sorry, Dad~)
Anyway, she is sooooo beautiful, and I know you are so proud and thankful, for not only this precious bundle, but your entire family, as well.
I think we all have a Kayleigh addiction, but never want to slight Allyson or Brandon, either. So lots of hugs to everyone!~~~ It takes a very special brother and sister to do what they do everyday, and sacrifice their time with you guys, and be patient through all the hurdles.
Have a wonderful weekend, and thanks for sharing your family and hearts with all of us, and for letting us love your sweet little girl.
Kisses for Kayleigh,
Pennie, Michella and Marissa
She looks so GOOD!! I am so happy for you. I can't believe this is the same little girl!!
HAPPY VALENTINES DAY KAYLEIGH!!
Amber (Las Vegas)
Kayleigh looks awesome! I am so glad that things are now going in the right direction!
My daughter, Jules and I will be walking in Kayleigh's honor in the March of Dimes' March for Babies in April. A small token for the little girl that has stolen all of our hearts. Should anyone want to support us, Kayleigh and all preemies .. here is the link:
http://www.marchforbabies.org/personal_page.asp?w=11028817&u=aclynch70
We'll be sure to send pictures of us wearing our bracelets! :)
The Mills Family
Oh How Wonderful that she is in her big girl bed. She is so darling. I chech twitter and here at least once a day and am just so happy that she is making good progress. Darrell
Can you please update a little more on your financial situation? I was heart broken to read about all the additional stress it was putting on your family, and would greatly appriciate to hear whether the financial aid that other readers talked about has proved true.
Living overseas America's medical system is often described as terrible, considering the costs you have to pay. To hear that your government at least has some support for the most needy (such as infants in kayleighs condition) would definately bring a little joy to my heart.
I pray for Kayleigh, and am very glad to here she sounds as though she is again very close to coming home, and am faithful she will overcome anything in her way. She is truely inspirational, and you story is definately one of god's greatests gifts.
Happy Valentines Day Freeman Fam! Oh, I love it! She's such a big girl! I too shed a little (ok...a big)tear of the pic with Kayleigh looking at her beautiful Mama :) Not sure about everyone else but I'd love to see more pics of her with her brother and sister.
~Susan
p.s. I see the bracelet! Love it!
I'm so happy for you guys! God is Good!
So cute and what a big girl! Her little pink and brown bracelet is adorable! What a happy day for your family!
WAY TO GO KAYLEIGH!!!! Awesome big girl bed you got there! I am so proud of you! I hope she can go home really really soon!
She looks absolutely wonderful. She will be home in no time. Her eyes are much more focused it looks like. Wide awake. I love it. Yes the one with Aimee kissing her is precious. I have tears right now.
Keep up the excellent work Kayleigh. Many prayers for you all.
Denise in CA
Freeman's
I am totally awe!!! She is looking better ever time you post new pictures. This is truley a miracle from God. Don't ever let anyone tell you any different. I am praying hard for her every day and I know soon she will be home with you guys. My little girl is says a prayer for her everyday. Please keep the updates coming, these are truely the highlights of my day (day in and day out). This has made my weekend!!! Thank yu Kayleigh for being my inspiration, I love you.
She looks fantastic! And you know the best part about those "big-girl beds"? There's room for mommy and daddy to squeeze in there to snuggle her close! I used to climb in with my little girl every time she had one of those beds in the hospital! And I noticed she is propped up on a pillow there... I used to prop my little one up in a Boppy. She had reflux until she was well over a year old, and it kept her perfectly elevated. Not to mention, it snuggled right up next to her just like my arms, and kept her calm when I wasn't holding her! Just an idea I thought you might like to try... Good luck! She looks absolutely amazing!
I'm so happy for Kayleigh and your family. She is making such progress and looks so wonderful and beautiful. That magic day when she gets to go home is going to be so amazing.
I have been following your blog for a long time, but I haven't commented until now.
Your last post gave me goosebumps! Our daughter started her life in the NICU - no where near as long as Kayleigh, but we've certainly had a lot of scares and it was a bumpy start to her life!
It will be such beautiful day when she comes home.
I will continue to pray for you all and hope that she comes home soon!
Kayleigh is beautiful and you are both amazing parents. She is lucky to be given to you.
God Bless,
Melanie in SD
Looking good Kayleigh!!!!!!! Happy Valentines Day!
I too have been following your story, although I haven't commented.
You are in my prayers always. Prayers that your beautiful daughter will get stronger every day, and will soon be home with you!
Praise God! What awesome news! I will be praying over the next couple of weeks about her minor hurdles. Hopefully in no time she will be at home with her very loving family!
She looks amazing, congrats on the big girl bed. Any word on when she might be coming home yet?
Happy V-day!
She is absolutely beautiful!! What a sweet blessing and we are praying you get to go home soon!!
i remember the day avery went to the open crib...what a big day! CONGRATS!
God is so good!! Kayleigh looks fantastic!! I'm amazed at how much progress she's made. She'll be home before you know it!
She looks great! Fingers crossed for Cpap!
What an awesome sight! Kayleigh looks so beautiful and she looks great.....thank you Lord! We will keep praying and believing for total healing and that Kayleigh will be going home soon!
Praying in New Braunfels, Tx
Absolutely Awesome! Happy First Valentine's Day Miss Kayleigh and family! The love for you is so great precious one, hope you feel it today! Get well so you can come home...much xoxo's
OH my goodness.... it is so good to see her little face without all the tape and stuff. I can't imagine how good it feels to you to walk in and see her in her big bed.
She is such a sweetie. I will be praying for knowledgeable caring doctors and nurses to help her speed up her care. What a homecoming you will have!!!
I hope that you interview will lead you all to even more blessings and that Kayleigh will be an inspiration to those that need it.
YAY Kayleigh! A big girl bed! How exciting! Just wait until you get to check out your crib at home! I have faith that will be very soon! God is great!!! :) Stay strong girl...you are almost there!!!
Adorable!!! We are so excited about the good news. We're praying for continued progress in the right direction! Love The Nadeaus
This is exactly what I asked for for my birthday. Thanks Kayleigh for giving me my birthday present. you look AWESOME!!
Kayleigh, my dear, what a perfect Valentine's Day gift! You look so cute in that big girl bed. :)
My little one is sitting here pointing at your pictures and saying your name over and over. I think he loves you as much as his daddy and I do.
I swear you get prettier and prettier with every post! :)
Aimee and Adam, I hope you found some time to celebrate Valentine's Day together.
And the post above is right...Allyson and Brandon must be the best big sibs ever!
Love and hugs, Freemans...
WOW! Kayleigh is absolutely Beautiful!!! She looks sooo good :)Im so happy she is in a big crib and soon enough she will be home! I continue to pray that Jesus will completely heal her so that she can get out of the hospital very soon. She looks like she has gained some weight which is also so good to see!!
Praying and Believing!!
She looks so great! What an amazingly strong girl you have. And you are an amazingly strong and loving family. I will pray that she will continue to make great strides and get home soon!
i just wanted to say that I came across your blog last night and it is now 6:30 am in the moring I have been reading for over 9 hours ! Your story is a great inspriation to me to become a better person! We take a lot for granted in life! I will pray for your daughter tonight ! She is a gem
Lisa From Canada
Hi Guys! I normally do not ask questions because you tell us each and everything that I want to know! But today I have a question that I hope that you might be able to get to in the future. Adam can you tell us more about the fact that Kayliegh is on CPAP now and what that means. I know what it is but are they trying to get her of te trach soon? I am a bit confused...If so that would be GREAT but I was just wondering what that means for the future hurdles for little Kayliegh and if this is going to be a shorter process then I once thought.... From the point she got the trach to when she is going to get it out!
Okay and now my comment, I am a birth to three early intervention specialist.Big words to say baby therapist!!! AnywayI encourage you and Amy to look into Early intervention for a great team that can help kayliegh with her development. There are also PTs that can help you avoid some of the head shaping concerns. But for now, If you can at all change the way that Kayliegh lays as often as you can that will help. Tilt her on different sides, use the bobby, hold her when you can with miminal touching of her head to give it a break. And prop it up in different ways to get the pressure in different spots. After she is able to get up and around there are baby helmets that are a bit hard to get used to but they ARE effective!!! And Kayliegh can handle ANYTHING!!! I can get you the name for the one in connecticut but I am sure that there is one closer. The childs head is molded for the helmet and then they wear it each day for 23 hours. The helmets are changed inside as the babies head changes ahape, then after a few months baby is at a round head again!!! So dont let the flattening make you really worried, but do change her as you can in her bed even from the front of the crib to the back it will help!! Also, often babies have delays from being premie and through all this that she has so a birth to three team assembled now can catch little kayliegh up asap!
regardless she is one of the most beautiful little girls I have ever seen!!!
if you get the chance can you try to get to my question?
Thanks and god bless!!!!
Priceless... breathtaking... angelic.... all words to describe Kayleigh's most recent pictures in her big girl bed. I am jumping with excitement! Go, Kayleigh, Go... Home is in sight! Oh, I will shed many tears of joy when that day comes! Love you Freemans!
Crissie,
The difference between the vent and the CPAP is that the vent give Kayleigh breaths along with enough pressure to keep her bronchial tubes open. The CPAP gives the constant pressure to keep the tubes open, but does not give breaths since Kayleigh is breathing all on her own now.
That does not mean she will coming off the trach anytime soon. Kayleigh will most likely be on the trach for a couple years to allow her bronchial tubes to grow and harden so the added pressure minue weak tube, cause her to close up and not be able to breath.
Thanks for the idea on early intervention (therapist). She has people at the hospital who perform OT/PT/Speech Therapist to help her with her developmental side of things. I am sure we will be hooked up with a team of specialists once we go home.
I hope this helps clear things up. I will probably touch up on all this in the next post too incase others might be questioning it.
God Bless,
Adam
Awww... I'm so glad to see Kayleigh doing well!
I just found your blog today and I'm already in love with your precious baby girl. I will be diligently be praying for you guys and sweet Kayleigh.
Blessings,
Steffani
It's amazing and wonderful to see Kayleigh in her big girl bed!! Praise God that she's doing so well. I'm keeping your family in my prayers.
Kristine
Following some links, I stumbled on to your blog. What a precious little miracle Miss Kayleigh is!!! I am praying for her, and I'd also like to tell you that this precious little miracle will continue to amaze you.
My daughter was born 10 weeks early weighing 1 pound 2 ounces. She fought hard and had lots of obstacles to overcome. Currently she is a sophomore in college, earning a spot the last two semesters on the deans list.
While Little Miss Kayleigh may have more things to overcome than other babies, these precious preemies have a spirit and determination that is just amazing.
God Bless you!
such a precious face! and look at mommy getting them sugars!!!
What a big girl!! I have been praying for Kayleigh and will continue to do so!
The picture of Aimee kissing Kayleigh is my favorite...so precious!!!!
I'm happy to see she is doing so well and in her big girl bed! My prayers won't stop coming!
AWESOME job with the CPAP Kayleigh! Next step from there is getting to try out "nose" time. That's even better, trust me! Praying you continue losing tubes and get to come home soon.
Believing, hoping and praying that Kayleigh is getting closer to moving out of the hopsital and into her home. God is in control and thankful for this.
Blessing to ALL of you,
I am another first time commenter, but I am so excited for little Kayleigh! I check her blog every day, and I'm so excited to see her in her big girl bed!
More prayers are coming your way :).
Seeing your little girl in the "big girl" bed brought tears to my eyes. My Friend had Quads and being in cribs was such an big move that only brought then closer to going HOME! Congrats! YEY K.! God is Good! Love-Sarah.
Oh you guys i am so glad to this post and these FABULOUS photos of that sweet little butterfly!
I am so glad things are going well and Kayleigh is doing so well!
Praying everyday and will never stop:-)
Love in christ,
Juliana
www.positivechaos.wordpress.com
Wow, I look at that beautiful little face and I just can't wait until you can hold her and hug her and take her home! :)
Is anyone else starting to notice HOW PRETTY Kayleigh is going to be? Wow, you can really see it in the latest pictures! She is going to be a very pretty girl!
Lots of love to you guys. I'm praying for a financial blessing for you. I KNOW God has it handled in His own wisdom.
Love,
Patty
I am just now joining your story..looks like you have your very own "Thumbalina".
I cannot wait to follow your story, you are on my tool bar now...
A new praying mom
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