3/13/09 - Sitting - Waiting - Praying

Before I start, we are still gathering Kayleigh's bedtime stories from all our faithful followers. We currently have around 55 stories so far, but I was hoping to put together 365 to read to her for every single night of the year. That seems far fetched now, but we would still like to receive everyone's story to enter in to this book. Please refer to this post: Opening Up to learn more about this project we all have been working on for Kayleigh. Since she is projected to come home soon, we will need to finish things up very soon.

It seems like sitting and waiting is all we have been doing this whole past week. Sorry there haven't been any great updates, but as we anxiously await these final weeks before Kayleigh can come home, we are on stand still because of all the tests they are doing. So no progress has been made this past week and we are probably still a month out before Kayleigh will FINALLY get to come home after "almost" 9 full months in the NICU. (OUCH!!!)

This past week, Kayleigh has had several test performed to determine whether or not she needs to get the Nissen procedure done. We were supposed to hear something today, but that didn't happen so we hope to hear something this weekend.

The MRI to give us more details on Kayleigh's eyesight was postponed for several reasons. They feel like the MRI results won't change anything at this point and the reflux issue needs to be handled first. Since Kayleigh needs to be heavily sedated for the MRI and a different trach needs to be inserted (because of metal and magnetic issues in the MRI), they will perform the MRI while Kayleigh is sedated for the G-tube/"possible" Nissen surgery. So it should be next week that we are able to get all of this completed.

On another note, they did do a hearing test today and feel like Kayleigh has moderate hearing loss. However, it could be what they call "conductive", which means there is fluid build up from her lying in her bed for the past 9 months. If that is the case, it is easily fixable. If it is not conductive, then we have a bigger problem on our hand. I am not sure when the follow up exam is going to take place, but I it will more than likely happen after they perform the surgeries and MRI for her eyes next week.

So, just when we thought we were out of the woods with issues, they just don't seem to go away. We really thought that nothing else could possibly happen because Kayleigh has seen it all, but I guess we were wrong. Please pray that things aren't nearly as bad as they seem right now and that we will get out of this hospital soon without any other major issues. We are beyond exhausted with all the stress going on and we could use so many prayers from you all to lift us up.

This is going to be a tough week next week with all that is going on and we know that the Lord will carry us through this last leg of the race. However, we know all too well that your prayers have saved Kayleigh's life and brought her through some of her toughest battles. Just because her issues have not been a severe lately, that doesn't mean we need to not pray as much. I am at fault for not praying as much when things are going great and I am now learning a new lesson in life. We have to continue falling to our knees until Kayleigh is home for good just as if we need to fall to our knees when we have a perfect day in our every day lives. Our Lord should be glorified no matter what and no matter when.

I also ask that you pray for our dear friends, Brent and Michelle. Their Abby is in her last stretch with Chemo and she has a fever and a infection around her g-tube site into her tummy, but no white blood cells to help heal her sickness. Please pray that the Lord will work miracles and heal her frail body so she too can go home soon to her loving parents. Brent/Michelle, we are thinking about you all and we love you!

God Bless,

42 comments:

katster said...

im praying for both of you!

E @ Scottsville said...

Man oh man. The thought of her going home soon almost seems too good to be true. Wow what an aweomse, amazing God we do serve, huh?

We will definitely be praying that the next few weeks go smoothly and that all of the tests come back showing GOOD things. God already knows what they'll show though. He's smart like that. {{giggle}}

Praying for you guys wholeheartedly!!!!

Erica in Texas

The Pyrat Family said...

you and Kayleigh and Abby have my prayers of course! there are so many times that God keeps us waiting and it feels like nothing is happening but when we go look back we realize that He was doing a lot more than we thought. I have spent the last 2 days in the hospital where my preemie was born. it has brought back so many emotions and memories that had long since been forgotten. It was a reminder of what a miracle my now 5 year old is! One day, sooner than you think, Kayleigh will be an amazing little 5 year old too! praying for everything to go smooth and discharge day to come quickly! God Bless you all.

Anonymous said...

Been keeping up with your blog- praying for your little girl. She is so precious. Your faith is amazing.

I don't usually comment on people's blogs I don't know, but something extra special caught my heart in this post. My daughter was born profoundly deaf. I see that Kaleigh may have moderate hearing loss. Please email me if you have any questions- I'm not an expert, but I've been there and can possibly help you out. In fact, I just returned from a conference all about hearing loss in infants and follow up... please email me if you get the chance and if you feel led to do so. The Lord has given us an incredible journey with Mecaden's hearing loss that we never would have asked for, but one that we would never trade. My email is bennett.emily @ hotmail. com (spaces removed).

Continuing to pray for your precious family.

Emily

Dara said...

As always wé will pray. So fünny you wrote aboüt not praying when wé have a good day I thought that yesterday too. Keep the faith and the lord will see Katleigh thru whatever comes at her.

Jaycee said...

Praying for you in Houston, Texas. Keep your faith always. Never question God, and never doubt God. You will reap the benefits of your faith in Him soon enough.

Elkins 5 said...

Do the PT/OT's think there is sight and hearing loss? I would think that they would be able to tell something while working with her....maybe not. Anyway, I'm always praying for you guys but haven't let you know it in a while...sorry! I think that since you know she should be coming home soon makes it that much harder for the time to pass and to be patient. Plus everything else that is going on outside the hospital. I pray that Kayleigh is just teasing the docs and proves them wrong...again. If (big if) she has lost any sight or hearing she is still one miraculous baby and will continue to change lives and nothing will stop her from what she was meant to do. You all are great! I pray that things get easier for you....at least so you can breath and enjoy.
Susan

Adam and Sherry said...

You are truly an amazing family. I pray that the tests come back wonderful and things aren't as bad as they seem right now. But if it is the case Kayleigh is even more of a miracle. She was put on this earth for a purpose. We all know that is a fact. Weather or not she can see or hear doesn't change her purpose. She has touched my families life and heart and we feel an unconditional love for her in many ways. And for you sweet family. You are so strong and I will be praying for you too. It really is times like these that the lord carries you through. Everything has a purpose and it is our job to find out what that is. You have been so blessed as to find the purpose. Just remember the lord won't give us any challenge that we can't handle. You can do it!!!

jenjen said...

Hi - I just found your blog. What an amazing journey you have been on so far! I hope that everything works out in the next couple of weeks!

I just wanted to let you know that my oldest had the Nissen operation and it was the best thing we ever did for him. He was 3 when he had it done and his reflux was very severe. So hopefully you won't have to go through anything else with your sweet little girl.

Praying for you in Utah!

Jen

Midwest Mommy said...

Praying.

Devon said...

praying....nothing like the NICU to keep you on your knees...

hang in there...

Carp said...

Adam & Aimee,
Keep your heads ups guys. You have done an amazing job at keeping your faith and God does not forget things like that. God has a plan for everything. If we put him first above all else he will answer our prayers. I have no doubt in my mind that Kayleigh will make it home soon with no problems. Sometimes in life God throws us these "curve balls" to keep us in check. And like you Adam, I too have fallen behind in thanking him each and every day for the blessings that he has given me and my family. We use excuses like the stress of every day living, but in God's eyes that means nothing. Keep your heads up and keep praying, that is all you and all of can do from here. Thank you again Kayleigh for showing the world what a true warrior of God is like.
God Bless & Love,
Brian

Michelle Riggs said...

We ae rthinking about you guys and praying. thank you so much for praying for Abby.

I wish we lived close enough to do more than pray.

The Carpenters said...

Kayleigh, my dear, prove 'em wrong again! We know you can do it!
And this post reminds me of Stephen Curtis Chapman's song, "Let Us Pray".
Let us pray, let us pray, everywhere in every way, every moment of the day it is the right time.
Like breathin' out and breathin' in, when we finish start again... Oh let us pray!

Faye said...

HEY GUYS!CANTON GA.IS PRAYING FOR YOU ALL.GOD WILL WORK IT ALL OUT.WE LOVE YOU GUYS!

Kristie said...

So many times we think God is making us wait, when he is simply saying "Be still and know that I am GOD"

I am praying for both Kayleigh and Abby every day.

I am sad though you didn't post any pictures of that sweet girl of your's.

I can imagine the emotions the two of you will feel when she does come home.

Kristie

PSSS>>>>>>>>>>>>>PICTURES>>>>>>>>>>

Mandy said...

Praying for Kayleigh and Abby!

Hope said...

I'm thinking of you guys. Ava is going through some testing to get the Nissen too. Not fun. Huge ((Hugs)) to you. Your sweet girl will be home with you soon.

mommaof4wife2r said...

i am so heavy hearted for your extra news of k's eyes and hearing...praying for those things as well as your peace and strength and wisdom to handle all that is in front of you...you are resting in god's strength...it's hard to see sometimes, i'm sure...be strong!

momto4kidsny said...

Hi!! I found your blog a few days ago via a link from the New BabyCenter Community. It took me a few days to read your whole blog yet I did it!!!
There is one thing that I learned while reading....Kayleigh pulls through even when everyone thinks she won't. I'm positive she will pull through anything else that is thrown her way!
Fingers crossed that everything goes well!!!! I will be following her story from here on out!!!

Britni said...

I'm working on my letter for Kay!! I might have to be the last page in the book at this rate. School full time and taking care of a five month old is kicking my butt. It's coming babygirl!

Jenney said...

I am so sorry about all the new happenings. It has to be hard. I am currently sitting in a Children's Hospital waiting to find out what on earth is wrong with my own son...we've been dealing with his issues a measly 4.5 months compared to your "almost" 9...and been in the hospital only 24 hours...I'm already going stir crazy. I now feel that maybe I can better pray for you guys...I won't say I know what you are going though, I don't, but I know that it is scary, hard to wait, and sometimes the answers they have are not ones we want to hear. Hugs From Ohio
PS My son's birthday is 6-27-08...four days from Kayleigh's

KG said...

I'd love to see a new video of Miss Kayleigh!!!!

KG said...

Also, did you ever settle on whether or not to do an after-Kayleigh-is-home blog? If so, did you decide on a name? Sounds like it's time to start getting that all set up!!!

We're praying!

Shari said...

My 6 y/o daughter has moderate sensioneural hearing loss and does quite well without aid. I just wanted to let you know that it's not necessary horrible news! Hang in there (((HUGS)))

Jac Tubre said...

Hello Freemans!

I just wanted to say God Bless You and sweet Kayleigh. I am praying for the day she comes home from the NICU. I vividly remember carrying each one of my babies out of the NICU. It is a moment you will not soon forget. I pray that moment comes as soon as Kayleigh is ready and that that moment is in the very near future.

Jac

jlwgator said...

Hmmm...for some reason I bet Kayleigh can hear and see just fine and this is just to keep her doctors on their toes! haha! I'm only kidding. I do hope you get the best results possible. Sending you positive thoughts each day...

Sweet Joni said...

Please don't get discouraged on the amount of 'bedtime stories' some of us are still working on them & some of us (Like me) to be honest just totally forgot! THANK YOU THANK YOU THANK YOU for the reminder!!! :) Now I've got a NOTE to do it... when I'm not quite sure but in the NEAR future! I've got to admit... my mind is easily scattered & goes off in many different directions at one time, like clicking on one of your links then not getting back to 'square one'... yes I follow ALOT of blogs including my owns LOL

Hang in there, the amounts will go up... Take Care & Keep Smiling :)

Anonymous said...

Adam & Aimee,
The Lord has brought you guys so far...let's keep the faith and believe in Him for a miracle! Kayleigh has touched so many lives and we have learned to be better and more compassionate people. I believe that God has a purpose for Kayleigh as well as you both. Let's believe and trust in the Lord for complete healing for Kayleigh! Soon she too, will be going home with her family.
Praying in New Braunfels, Tx

Carol ann said...

Stay strong Aimee and Adam! We're thinking and praying for ya'll daily. Hope this weekend brings better news. Love the Nadeaus

Carol Ann said...

Just read the twitter! No Nissen! Sooooo wonderful!

Heather Marie said...

Praying Praying Praying for Kayleigh!!!!

Georgia in KC said...

Hang in there. Like everything else God will get you through this too. You have been through so much already I know you just want all the bad to end. I will be praying every day for good news. Maybe this was just His way of telling us we were all slacking.

Stephanie said...

Praying for Kayleigh!

Kaytlinn's Blog through Mommy's eyes!! said...

I just wanted to take a minute and thank you for adding Kaytlinn to your prayer requests on your page...I know there is a reason that we have gotten to meet you, and our little angels definatly connect us as parents. As they do brothers and sisters of God. Thank you so much for giving us this opportunity to have so many of your prayer warriors know my little Kaytlinn, and be able to follow and help her through the power of prayer. I dont know if anyone has added her page yet. But just the opportunity of having so many people able to connect, and be able to pray for our little girls is amazing. Thank God Kayleigh is doing so well. And continues to awe all of us. ~The Kellers

KM said...

Hang in there! Oh I hope it all goes smoothly... I
will be praying for you. I am a new blogger...
and I pray for these types of situations daily.

I knit, and have made a hand-made baby blanket
that I am GIVING AWAY this week. So visit me...

God Bless,

Kathy

Cristi said...

Praying that all these new issues will turn out for the good. I know so many times with Avery we were told one thing was happening and after prayer the situation changed and the problem was solved/gone. Lord I pray that Kayleigh will have ears to hear you and eyes to see you! In Jesus Name.

Lindsey Barham said...

Freeman's
I am praying for you guys right now. I am praying there is no infection and this will all resolve itself (vomitting and sweats). This gets me down and upset but I know god is in complete control of this situation and this is just another minor hurdle Miss Kayleigh can over come with flying colors. Contuine to keep your faith and know we are all praying hard for this miracle. We love you guys so much!!! What ever life throws us we can always conquer and fight it with God on our side. Please Please keep us all posted on this. I know she will be fine!!!

Angie said...

I keep praying for your sweet little daughter. I will take some time this week and get a story ready for Kayleigh. :)

Emma said...

I hope you don't mind that I've added your blog to my blog list. I have just created my blog, with a view to posting prayer requests and simple thoughts.

God bless you all.xxx

Tanya said...

My daughter has hearing loss that is conductive and a set of tubes usually takes care of that, also as long as there is some hearing, they can enhance it with hearing aids which are really state of the art nowadays. I am praying for Kayleigh and for your family. And, yes, you are right, we have to pray just as much when we are happy as we do when we are not.

Blessing to you

leah said...

I found your blog through google. Many prayers for good test results for your little one! If the hearing tests show a permanent hearing loss, know that modern hearing aids are amazing (nothing like they were even ten years ago). Our little guy has a moderate loss and is doing really great with them!