3/24/09 - Sleeping Beauty :)



Over the past couple days, we have been on hold with any type of surgery for Kayleigh's feeding situation. Kayleigh's belly started to blow up last week and with the fear of an infection, many tests were being done to catch whatever was causing this to happen. They stopped her feeds and then things started to fall apart quickly.

The first thing that took place was bleeding in her trach, which could have been caused by numerous reasons. They feared the trach was a size too big or they feared Kayleigh was having bleeding in her lungs that was coming up in to her tubes. They could not lay a finger on what the issue was, but chalked it up to be minor rubbing on her trach site or in her esophagus. This problem happened twice.

The second issue happened the other day when Kayleigh's Flolan central line backed up and she started to desat pretty low. They figured out the problem really quick and administered her Flolan through a syringe and it stopped the desaturation from happening. This goes to show that Kayleigh needs that Flolan or she could have a hypertensive episode that could cause her to fall apart quickly. The central line showed no issues and they started her back on the Flolan at the original site. There is only a 3-5 minute window if this central line in kinked or backed, which will then cause some serious pulmonary hypertensive episodes to kick in.

The third issue was when Kayleigh developed a fever that was sitting right around 100 for a full two days, but out of no where dropped back to a normal level. Her temperature has stayed in the same position all day yesterday and today, so we are happy to see whatever was causing that has gone away. It could have been from all the tests they were doing to see what was wrong with her belly issue. Too much poking and prodding can make me sick too.

The last issue which has surfaced again after 5 months is Kayleigh's hernia. She actually has two of them in her bottom area that need to be addressed before going home. They have decided to pass on the MRI for Kayleigh's eyes right now and do the procedure to fix these two hernias when they do the PEG procedure. We will find out later when the MRI is to be scheduled. The PEG is what they decided to do instead of the G-tube. There is not a whole lot of difference between the two except the PEG is less invasive.

So, with all the issues Kayleigh has had over the past few days, she has made another astonishing turnaround and gotten herself back on track. There is no more fever, no more desatting, no more trach bleeding and she is currently back up to full feeds. They have talked about doing the PEG procedure either at the end of this week or the beginning of next. This is such a great, quick turnaround for her and we are now breathing in a breath of fresh air. We spoke with a doctor today about getting her on the home equipment after she recovers from the procedure and bringing her home shortly after that. How awesome is that going to be??? WOO HOO!

Many of you asked about her head circumference and they did her measurements last night. Her head and belly are large, but they are proportionate for her size. If it is big, then that just means she is going to be smart or she is just bull-headed and we know for sure she is just that. She weighed in at 8lbs an 3oz and we are happy to announce that as of yesterday, Kayleigh is now 9 months old.

If you haven't noticed, I have added TheBlogFrog to Kayleigh's site for all of our Kayleigh Followers to become members. I decided to take down the blog scroll and put this up in it's place. It will allow all of those who have your own blogs to become a member and every time you come to Kayleigh's blog from your own personal blog, your blog link and blog name will appear for all the others to see. So, if you have not become a member of Kayleigh's BlogFrog community, sign up where the link says "Become a Member" over on the left toolbar. It is a great way to get your blog seen and story told from all the thousands of people who visit Kayleigh's Story each week.

Please continue to pray as Kayleigh is on the home stretch. Pray there are no more setbacks and all the procedures will go smooth so we can prepare to bring her home. What an amazing day that is going to be and I hope to celebrate with every single one of you through our posts and comments. You all have been such a wonderful support system for us and we can't thank you enough. We received over 65 bedtime stories and still have room for more if you want to write one. Just email me at Adam@TeamFreemanProperties.com

Thank you all so very much!

God Bless,

41 comments:

Vanessa said...

I'm so excited for you guys that things seem to be turning around again!! Still praying she gets to come home soon!!

nicole_dib said...

Glad to hear that she has turned around so quickly! That is great news about her coming home! Happy 9 month Birthday!

Praying for continued healing,
Nicole from Florida

HappyHermit said...

My prayers continue to be with you.

Kirsten: said...

She is such a strong girl...glad she turned around so quickly!!! Happy 9 Months Kayleigh!!!

The little things said...

shes beautiful and God is so good to this beautiful girl! Can't wait to see her in the future, just think Adam sooner or later you will prob. be walking this beauty queen down the isle...

Konnie said...

Happy 9 month Birthday Kayleigh!!!
We are Praying for Kayleigh and Your Family.

Yarnmomma said...

Miss Kayleigh is sooo precious.. Thank you for sharing your life with us... She is the reason I want to be a nurse to take of MIRACLE babies... god is so good.. I can't wait for the day I read on here..

WE'RE TAKING KAYLEIGH HOME>>> What a day that will be to rejoice in ...

Bless you,

Stephanie in mo.

Patricia said...

Hi Kayleigh...looks like a little Angel...she is sleeping so peacefully! Praise GOD for her turn around...she's such a strong little girl...9 month's old...and weighing in at 8 lbs. 3 ooz. I was just thinking as I was reading this...I weighed 8 lbs 4 oz. when I was BORN! WoW! I have been kinda worried...by you not posting anything for a few days...so I was praying so hard...in case something was wrong....BUT sooooo glad to know...Kayleigh may be going home very soon! Praise GOD for HE is good all the time! Will be keeping all of you in prayer! Have a spectacular GOD filled week...please give Kayleigh a big kiss...she is so precious!
Patricia

mommaof4wife2r said...

that girl is a go getter...us little ones always are (i'm on ly 4'10"...almost).

you all have really hit the days lately...but i'm so relieved to see that things continue to come along. home equipement sounds AMAZING!!!!

still praying for you all.

Carol Ann said...

So happy things turned good before getting really bad. Kayleigh must know she's about to go home! What's going on with all that? Are you moving?
I'm working on my letter and will send it soon.
We'll be praying for continuous good days for Kayleigh! Love the Nadeaus

Jennifer said...

Happy 9 months princess! Boy have you got a story to tell all. You've come along way. Praying for you little one and your family too. You are getting bigger & bigger each new day. Just adorable!! Believing that you will be home, soon.

LDaniel said...

That pic is soooo precious!! What a sweetheart!! Happy 3/4 of a year Birthday! :)

Chrystal M. Smith said...

I honestly didn't know I would get to say this by nine months, but Kayleigh's got chubby cheeks everyone! Chubby baby cheeks rock!

The Leighton Family! said...

She is such a little princess! I will def. be praying for this little princess to get to go home to her castle....LOL! Best wishes!

Mummy2LeonaLex said...

sorry youve had a few setbacks but as always that strong lil baby has turned it all around and i so happy she has!! Im an avid reader of lil Kayleigh from England keep doing what you do your a great family =D xx

Stephanie said...

I'm so thankful that after all the events of the past week that Kayleigh is back on track!!!! Praying for improvements so that she'll be home in no time!!!!!! :)

Anonymous said...

Kayleigh looks so beautiful! The Lord has brought Kayleigh through all this for a reason. She has been an inspiration and a blessing for many. We trust and keep believing in God for a complete miracle!
Praying in Texas

JanaBanana said...

Sleeping beauty is right! :)

Dina said...

I really wish Kayleigh didn't have to have ANY more surgeries! I feel like they just might set her back a little bit, and I just want her to go home and get better!

Sorry for all the steps back you guys had to take this week, but I'm happy she is going in the right direction again.

Happy 9 months sweet baby Kayleigh!

Lindsey Barham said...

Freeman's:
This is such a blessing, our God is so so awesome. Can you reqeust the procedure be done this wk, in case anything else may happen to pop up? Which I am praying that nothing else will come her way and she will be home with you soon> What a wonderful day this will be. I cant get over how much she weighs, she will be caught up before you know it. I look forward to more wonderful updates, just keep the coming. :) Kayleigh is truely a blessing!!!

The Mama said...

I am so excited to read this! I am happy for you guys. Her smile is enough to melt MILLIONS of hearts. Congrats! And she is a TRUE FIGHTER!

Jessica said...

I have never posted before but i have followed your story since babycenter and i check in on kayleigh every day. I have a question that im not sure it may have been answered a while back and i just over looked it. Have the doctors found out why she isnt growing well. I know she has gotten a lot bigger since birth but you would think that she should be bigger by now. Will she always be so tiny or will she eventually out grow this. Either way she is a cutie and i was just wondering about that

Aimee and Adam said...

Lindsey - I wish we could schedule the procedure today, but the doctor who is doing does not have an opening in his schedule. He is trying to move things around and we will take the earliest he can provide.

Jessica - They never found out what the cause of her slow growth and they still can't figure it out, but your guess is as good as ours. I am not sure if she will grow out of it. Although, we never want our children to grow up anyways, so I guess I get a little peanut longer than most.

Sorry for the delay on posting the package winners from the giveaway. I will tell you why soon, but we have picked the winners and we will post them soon, hopefully tonight :) I know you all are anxious and so are we.

God Bless,

Adam

Lindsey Barham said...

Freeman's:
Thanks for quick reply to my question. I had to stop and think that God has the time and day set for the procedure and this will be the best time for Kayleigh (hoepfully the docs will let you know soon). :) I can't wait for the update tonight on the donation/giveaway. Have a great day and give Kayleigh a big hug and kiss. All these pics lately just make me want to pick her up and love on her. She is just to adorable. :)

Anonymous said...

She is absolutely Beautiful!! I cant beleive how big she is getting, it makes me smile :) Im so glad that she has turned around from these setbacks in the past week. Praying for her hernia surgery, that all goes well so she can go home very soon :) Jesus please guide the Dr.s as they care for Kayleigh, strengthen her body, and surround her with your amazing peace and love.
Praying and beleiving!
Kelly

Ryley said...

Happy 9 months!!! :)

I bet those set back just make you hold your breath till they are over... not fun. Sorry you have to endure them..

It's so funny to think at 9 months she is smaller than my baby was when he was born just 13 weeks ago! What a tiny little girl! :)

♥..Kim said...

Hi, I am new to your blog! I have to say when I viewed your first couple of blogs, about Kayleigh, & her photo's I cryed & thought how could anyone not believe in our heavenly father above! God is so good!! That is an amazing story that you have here on blogger, & I hope to try keeping up with. I have recentley been following McMama's blog & am praying for baby Stellan to get threw his heart problems. I will be praying for you & your family as well! God Bless you!

Jenney said...

I am still praying for you guys. When I read she is 8 lbs 3 oz now it really kicked me in the butt...I've been upset all day that my 9 month old is only 14 lbs 14 oz. (he has undiagnosed growth problems). It will make me pray all the harder, and praise God all the more.

Jenney said...

Also (sorry) I would like to say that she looks FABULOUS in pink ;o)

Sara said...

Wow, beautiful little Kayleigh has had a rough couple of days! I am glad that things have turned around again and seem to be on the upswing.

Give her lots of hugs and kisses from blogworld!

Petula said...

My so much has happened and she has grown so much since I was here last. I am glad she made a quick turnaround from this last set of issues. I still have your badge on my blog and I am happy that the support and prayers are still going strong. She's as beautiful as ever... take care and I look forward to coming back to hear more good news.

Hope said...

She's beautiful and doing so well. Her parents are amazing, so that helps! I'm thinking or you all as we travel down a similar path you have, although a year later. I may have to email you all for advice. Dr C is just starting Ava's care.

Praying for your sweet girl:)

JaMean said...

We are SO glad to hear she's still doing well, despite her setbacks.

God Bless you all!

Love and Prayers from Utah!!

Lacy said...

I just came across your blog and saw the video of Kayleigh's story. What a wonderful testament of God's power! I have a 6 month old daughter who was born with spina bifida and is trached and on a vent 24/7. We also want nothing more than God to be glorified through her story and our everyday walk with Him and how He provides strength and healing for us. Kayleigh will be added to my prayers and what a blessing God gave us with our daughters.

Anonymous said...

Goodness, what a cutie!!

Glad I found your site. Praying for you!

Take care,
Amy
www.crumbsonmyfloor.com

MrsMelody said...

Just found your blog through Mrs Stacey's "Your Sacred Calling".

Your little Kayleigh is such a miracle. I know personally a premie who was just slightly larger than Kaleigh. He's now a very active and happy 2yo. May God continue to bless you and little Kayleigh.

Melody Locey

Anonymous said...

I have a question. I'm a NICU nurse and Kayleigh's story has been fascinating to me. I have learned so much just from reading her blog. I am wondering, though, what kind of support Kayleigh is receiving from the vent now. Is it just pressure support?
Thanks if you take the time to answer.
Karen, RN

Aidan and Cam's Mom said...

I am so happy that Kayleigh is doing better. She is such a beautiful baby girl. I just wondered, When she gets to go home, will you have a nurse there to help take care of her? I will continue to pray for her. I have a now almost 4 month old that was 6 weeks early. Whenever I look at Kayleigh I think about him too. Babies are so precious. They are truly gifts from God. Enjoy your gift!!!!
Love, Shannon

The Pyrat Family said...

my son had double inguinal hernia repair before he came home too.. it was very traumatic for us but after all the surgery Kayleigh has been through.. I am sure it will be alot easier on you... you cannot even see any scars on my son now 5 1/2 years old.

oh and Kayleigh's head looks just the right size for a 6 month old baby.. and she is 6 mos corrected age right!? the rest of her will catch up... my sons little body was slow to catch up too.. eeveryone told me he had a huge head! but i think it is a preemie thing... I can spot a preemie in a crowd just by the shape and size of their head.

April said...

Happy 9month birthday, Kayleigh! You are beautiful!

Brandy Lynn said...

I found your sweet Kayleigh's site through another. I just wanted you to know that I will be praying and checking for updates on her, as you continue to face this difficult road. My sister was born almost 33 years ago, just shy of a pound. She will be celebrating her 33rd Birthday in April. It's not been an easy road, but it's been a road full of blessings for our family. Keep your hope in the Lord, and never give up! My prayers will be with your family!