Is this not the face of Kayleigh saying "But Daddy Pleeeeaaasse?"
"I still see you Daddy"
".......................................................................................... "
I think I spent too much time trying to come up with something on that last one, but I failed each time.
I need your help! What would your quote say?
Update: Kayleigh is doing great. She is on low vent settings and it just having a good ole time over the past few days. We have not had any episodes, major desats or bad spells. She may get a little grumpy when she poops in her pants, but don't we all! (I mean, they all!)
Kayleigh's doctors are going to meet on Monday to discuss whether or not they feel she needs to get a tracheotomy. Both bronchial tubes are collapsing, but nothing exterior is causing them to collapse. Plus, the amount of pressure being used to keep them open is next to none, so no one can really explain what is wrong.
The best guess is that her bronchials are beyond weak, but what is puzzling is they were never weak before all of this. We can't turn back if we do a trach now and waiting a couple weeks for this to heal may not work, which will then cause her to need the trach then. The longer we wait also increases the risk of scarring from the vent tube, so that's not good either. I am sure what ever decision made will be the best one for Kayleigh. We just need to ALL pray that God leads the doctors to the best path for Kayleigh.
I wasn't going to post tonight, but I couldn't wait to start off the new look with a brand new post. I am so happy that you all like the new look. I felt like a kid with a new toy, I was so excited that I nearly pee'd my pants (Okay, not really) - but I was so excited to finally see it!!!
Leelou has done such an amazing job helping me with Kayleigh's new blog look and I am so thankful and blessed by her generosity. She took time out of her "pregnant" and busy schedule to help our family. She is 8 months pregnant to be exact and still looking for a boy's name (not Dane because it is one syllable and her husband wants a two syllable name.) Anyhow, I think we should all bombard her with two syllable, baby boy name ideas! What do you think? :)
Not only was Leelou so great to us, she is promoting a baby shower filled with contests and prizes in honor of Mia and Kayleigh. When she announced this on her blog yesterday, we were so excited that we wanted to tell every single one of you so you can join in. So, grab your ice cream, pickles and mouse, and come join in the fun contests to hopefully win some cool prizes on Feb. 9th.
One of the contests is a baby photo contest, so when you send in your baby name ideas to Leelou, you can attach your baby photos for the contest as well. (Hey, Knock out Two birds with One stone) Below...I am posting her recent post from her site so you all can take the button and share it with everyone you know.
Let's make this one of the biggest virtual baby showers known to man! How fun is that going to be!?!?!?!
Leelou Blog Baby Shower
Leelou is almost 8 months pregnant and wants to have a party!
We'll give you all the fun of going to a real baby shower, without the melted candy bars in diapers...ick!!
Starting February 9th, there will be loads of contests and giveaways so make sure you click on the link button below and get one for your own blog!
We are going to be benefiting two sweet babies that have spent months and months in the NICU.
Until the party starts you can click below to learn their amazing stories.
Baby Kayleigh
Baby Mia
Also...we are having a cutest baby photo contest. So if you want to enter, send us pictures of your kiddos now! There will be 2 categories:
One for babies 0-2 years old and another category for toddlers 2-4 years old.
The winners will receive some AMAZING prizes!!!
So email us a picture of your cute kid along with:
names, ages and location (you don't have to be super specific, just a first name and state will do) to http://mailto:LeelouBlogs@aol.com/ by February 7th!!!
We will post the 5 finalists on the day of the baby shower and leave them up all week for you to vote on them.
Good luck and check back on Feb. 9th!!!
Thank you everyone and God Bless,
29 comments:
aww she looks so beautiful as always!!!
always in our prayers!
Glad to hear that Kayleigh is doing oh so well. It makes me happy. I keep praying that they will figure out what is causing this and hopefully they can find another way to work it without a trach. She looks so happy and playful! About the last pic, yeah I can see her looking like she is smoking, but I think she is thinking more, "Get this tube out of me!"
I absolutely love the new website.
I pray that the docs will find an answer on Monday.
Jenn
She is just beyond beautiful, she looks so great! Virtual hugs and kisses, sweet girl.
LOVE, LOVE, LOVE the new look. Twitter has helped me keep up with Miss Kayleigh and it IS a HUGE blessing! Hope she has a great night!
~Elyse~
The last picture should read
DADDY MY STRAW IS BROKEN. I'M NOT GETTING ANYTHING OUT OF THIS THING.
That's what Austin always looked like.
She looks great. Keep up the good work mom and dad.
"If only he'd put some soda at the other end of this tube! ...Slurp!"
Sorry, it's the best I can come up with!
gosh she looks cute! love the new look!
i think Kayleigh's saying:
"I'm so darn bored, I'm gonna practice the air kazoo---the wheels on the bus go round and round" :) prayers for the princess, Leslie J. in CT
I am glad that Kayleigh's vent settings have been turned down. I know that when Kaden's bronchial tubes would collapse it was the peep that would need to be turned up to help get them opened (at least that is what I can remember). I understand what you are talking about with the fear of scar tissue. Kaden has over 60% scar tissue in his trachea from being intubated. His vocal chords have been paralyzed closed due to the intubation, so he will most likely need the trach the rest of his life. If he happens to be able to get rid of the trach we have been told that he would needed surgery to get rid of the scar tissue. Our ENT surgeon has said that they are starting to think that it almost would be better to trach a patient rather then keep them intubated for long periods of time, to reduce these risks, trachs seem to cause less damage and they can be easily removed when ready.
I think your contests sound fun!!! I will have to try to find a photo.
Thinking and praying for you all.
Amy
#1. I DIDN'T DO IT! Why would you think it's me?!?!
#2.I thought I told you NO paparattzi in here!!
#3. Stop it I'm messing with meh tubeh!
If I had kids, I would send in pictures, but right now it is a REALLY good thing that I DO NOT have kids! LOLZ hhhhhhhhmmmmm I wonder why? Maybe becuase I am 13. Maybe that's it!
Ande Malinowski age 13
caringbridge.org/visit/hokiebrian
www.colesfoundation.com
C.O.L.E. Prayer Team
*shhhhhh Mommy I am trying to tell Daddy something.
Great new digs!!!! I love it. Thanks for the update and I will definitely try to check out the bloggy baby shower benefiting your sweet Kayleigh!
so sweet!!!! ok, my caption on the last pic: "come on, daddy. seriously...how many pics do you need. fine. i'll hold your hand"
off for a baby shower looksie! woo hoo
Wow, Kayleigh looks oh so beautiful, as always, but there is something about these pictures...I'm not sure! These make me laugh though!
I can't find a caption in there (my brain) that hasn't already been said...mmmm...C'MON DAD?! I MEAN, DO THE WORDS "A BIT MUCH" MEAN ANYTHING TO YOU?!
Kayleigh is such a srtong fighter...keep growing baby girl!!
Also, I was wondering about how many twitters you do a month...I have 300 text per month and would LOVE to stay updated on Miss Kayeligh, but I don't know if I can...
With LOVE..
margaret
so happy that she is doing so well~~~Love the new look~~~ Praying for yall from Texas
How fun!! And Kayleigh looks amazing!!! I sat here wondering what the quote should be for that last picture, but I'm not sure either.
She looks great in her pictures. I am glad she is doing well and I know God will help the doctors decide on the best treatment for Kayleigh. She has come so far and she will continue to amaze us all as she continues on her journey to getting home. I am excited about the baby shower I will have to check it out.
As for the caption on the picture:
"Can you not see I am enjoying my hand, are you not done with taking pictures yet."
My God, she is so beautiful. She seems so much more alert and aware of her surrounding. I send her virtual kisses every time I see that adorable face. Kayleigh will be in my prayers until she gets home safe and sound......that is a promise.
As for the last pic? I see her saying, "Look officer, I'll do this breathalyzer one last time but I'm FINE to drive, really....." :) :)
The Caption should say something like " Okay Daddy, I'm sooo ready to get this tube out of my mouth...My fingers taste way better"
Praying God will give Kayleighs airway the strangth to stay open!
I think Kayleigh is saying "Do you mind..... I'm enjoying my finger sandwich right now!" or "Daddy, no more pictures please.....I'm busy!"
On the last picture:
"Maybe if I blow real hard I can get this thing out,so I can have my have my fingers."
Maybe thats what she is thinking. I do not have anything else i can say about the picture but SHE IS SO CUTE!!!!
"Daddy my whistle's not working. Will you fix it?"
the blog looks great!!
Kayeigh looks beautiful - really good! And I love the captions people have come up!
She is such and angel!! I think the 3rd caption should read "Get this thing out so I can go home already!"
God Bless Kayleigh. I love the pictures, she is so beautiful. I watch your blog daily and have everyone I know praying for your sweet baby girl.
Grrrr I wanna put my whole fist in my mouth but I caaaaaaaaaaaaant!!!
Hi Freeman Family,
I'm another one of LeeLou's clients and I'm advertising her baby shower (and your story) on my blog: www.themeanestmom.blogspot.com
I noticed that you live in North Carolina (my husband and I went to Duke) and are thinking about going to CHOP for treatment. We live in Philadelphia and my 4 month old son (preemie, blood disorder) is being treated at CHOP as we speak. If you want to talk, need help of any kind (including a place to stay), please contact me. My info is on my blog. We are praying for you!
Happy Belated Birthday Kayleigh!!
Happy Belated Birthday Kayleigh!!
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