Today was a special day as we spent one last day with Kayleigh before she goes in to surgery. I call this time period the calm before the storm. It almost feels that every time Kayleigh has recovered to the point she is acting and feeling her best, she is then put through another procedure or surgery that sets her back again.
I look forward to the day that I can worry about no more procedures, no more wires, no more tubes and no more monitors. I look forward to the day that Kayleigh will be so healthy and she will smile and giggle until she wears herself out. The day where Kayleigh can run around the house chasing the dogs and pulling at their tales. This time will come for sure (I know), but it just won't come fast enough.
Seeing Kayleigh play with her mobile for the very first time was a sight to see. Beyond the noise she was making while sucking on her fingers, she was moaning in such a way that really exemplified how good those fingers tasted. She was so happy and it just kills me to know after tomorrows procedure, it is going to be a while before she is that happy again.
However, I do know this trach surgery is going to be the best thing for her and I am so excited to see her progress once she recovers. It is just such a tease to spend 10% of this whole journey seeing Kayleigh happy and joyful, and 90% of the time not. The one thing I crave more than ever with Kayleigh is to one day be able to just nibble on her soft skin, tickling her to no end, and sending shouts of laughter through her voice. And that day is going to come, I just know it!!!!
Surgery starts at 7:15AM and they are going to take her down at 6:30. The procedure takes about an hour, so please keep us and Kayleigh in your prayers during this time. Pray that God will guide the surgeons hands to do a perfect job. Since Kayleigh is so tiny, and there are blood vessels in the throat that are in risk of being cut, the world renown surgeon is going to cut from in the inside out. He will do a broncoscopy, which will send a microscopic camera down her throat to make the incision at the trachea from the inside. He has performed thousands of trach procedures, so I am very confident in his abilities. When he is not working, he is on missions doing wonderful things to glorify God. We know God will be there guiding him through with safety and skill as God is perfect in everything.
Pray for Kayleigh!
God Bless,
77 comments:
I loooove the picture with your ring!! It really shows how big she has gotten!!! Big hugs to each of you! Lots of prayers coming from West Virginia. Lots of love too!!!! Tonight Kenna is obsessed with her Kayleigh bracelet. She keeps getting it around her wrist and cant figure out how to get it off then she gets soooo mad cuz its "stuck" I wish you could see it! Too cute!!
Rebecca
I will keep sweet Kayleigh in my prayers and will put her on our church's prayer list! I just love her and she has blessed me so much just in this short amount of time I have "known" her. Lil' booger and I wanted to send her a little gift (a couple of bows) how do I get these to you? Where do I send them? She will look so cute in them!
God Bless,
Audrey
I can't even imagine what this roller coaster has been like for you all. I pray that recovery for Kayleigh is very quick and easy this time and God will allow you all more of the joyous times when she is feeling her best.
will be thinking of her tomorrow and hope all goes well.
My heart is with you!!! I feel that anxious feeling as if she were my own getting ready for surgery. I will be praying tonight and from the moment I wake up tomorrow.
I love those new pics. She is just so sweet! And that ring pic, how cool! She is such a little blessing!!!
lots of love from our family to yours!! :)
The Plis'
Kayleigh remember we love you and you are in our prayers. Just 1 step closer to going home. God will deliver you through this surgery and the world will see His goodness and grace.
I will be praying~~
Constantly praying.
It will be wonderful for you to see Kayleigh's face without all the tubes. Also, when she is strong enough, even if she is on a vent, she may be able to start using the Passy Muir Valve so she can have a voice.
God bless you all,
Alicia
Been following your blog...love the recent picture with Kayleigh and your ring! Adorable! I'll def. keep her in my thoughts tomorrow!
She is just precious!! I certainly will keep you guys in my prayers. It's been so nice following your journey. Our first dayhome was run by an amazing mom with a little boy who had a trach, and nothing could slow him down!! I hope this helps get her home to you guys sooner!!
We will of course be in prayer for Kayleigh through the morning.
WOW!!! that ring picture is incredible! Thanks so much for taking it!
the pictures of Kayleigh playing made me cry. I just can't believe how far she has come. I was talking to my husband about the first post when Kayleigh finally goes home and could barely speak because of the tears, I will fall on my knees and sing praises to the heavens on that wonderful day. We are praying Kayleigh HOME!!!!!
Come on sweet Kayleigh. We love you so much little girl. Even though we don't "know" you, we love you.
Lord. I come to you tonight asking you to please touch the surgeons hand. Guide him through every step of the procedure, place your hands over his and give him all the wisdom he needs to get Kayleigh through this procedure tomorrow. Guide the nurses who will care for Kayleigh. Strengthen Kayleigh lord, allow her to come through this procedure with flying colors, let her recovery be swift. No desats or bradys. Please hold Adam and Aimee, let them feel the peace that only you can bring. Lift them up, give them strength. Comfort Brandon and Allyson, I'm sure seeing Kayleigh going through so much can at times be scary for them. Let them always know how much Aimee and Adam love them. Lord we ask all of this, in your heavenly name Amen.
praying, praying, praying.
Sarah, Chris, Helaina and Ava J.
I will be praying.
I just recently found your blog. I will be praying for Kayleigh and the whole family. I can't wait to hear how well the surgery goes! And I can't wait for the day when you finally get to bring her home and enjoy all of the "normal" everyday things that many of us take for granted!
I put her on the church prayer list today. Praying for an uncomplicated procedure and a speedy recovery with no complications! She's such a little sweetie!
Love the ring picture! I'll be praying for Kayleigh tomorrow from snowy Michigan.
Aimee Gillespie
i know the ups and downs of the NICU but am blessed to have my son at home. I know you will have Kayleigh home soon. My prayers will be with Kayleigh tomorrow but also with mommy and daddy too.
We will be praying for Kayleigh. She looks happy with her mobile. And I too love the picture with the ring. We follow your blog and appreciate you sharing Kayleigh's story with our family! She is in our prayers daily.
Hugs,
Nicole and family in Florida :)
DOes she have a slight case of jaundice? Or is that all the iodine from tubes running here and there? Just curious. i will be praying for you.
Jennifer W. and family
She looks so beautiful! We will be praying and hope for the best tomorrow. With lots of wishes and love coming your way.
God Bless
She will be so much happier to have the vent out and the trach in. She will be able to take bottles, and laugh and suck on her fingers to her hearts content. She will be so much happier and the sooner she can get home the better she will get.
Prayers coming tomorrow. I know how you feel turning your child over time and time again. Stay strong, stay together, and turn to each other.
prayers are with you.
love the pic of kayleigh and the ring, amazing to see how much she has grown
Love love the picture of her holding your ring. POWERFUL! ADORABLE! SWEET! There will be so many of us praying for your sweet baby tomorrow morning.....we will ALL lift your angel up in prayer. And yes, to ask for God's hand in this surgery as well. It sounds like Kayleigh is in good hands. Glory to God that she has been in good spirits...and to see her so happy and joyful. Please keep us posted.
Sending lots of love and prayers your way.
Will do...consider yourselves covered in prayer!!!
I am setting my alarm for 5 so I can bathe her in prayer! I will be praying for all of you all morning tomorrow! I love the ring picture too! She is one step closer to going home! I know it too!
I set my alarm to pray for Kayleigh!!! there are so many times that I take for granted my preemie's humble beginings... almost forget how terrifying it was! but now he is 5 and thriving, healthy, spoiled and just today was chasing our puppy around the house... I pray for the day when little Kayleigh is giving your puppies a run for their money... on that day you may yell out "no!" but in your heart you will be screaming "YES!"
Thank you Lord for Kayleigh, thank you for her ever improving health. You are her healer and restorer! Guide her surgeons hands, may her nurses be exceptional aides, may her anesthegiologist lull her to a safe, comfortable, slumber, and may she awaken afterward with a new foot forward in life.! amen.
Kayleigh you are so gorgeous!! We will be praying for you tomorrow as you take your next step towards coming home and for a very speedy recovery!!
Love and hugs from KY!!
my favorite pictures so far!! She is starting to look and act like a regular baby!! She is so darn cute.
My thoughts will be with Kayliegh,and your beautiful family in the morning. There isn't a day that goes by that I dont check atleast 5 times on your site. Your story has become a huge part of my life, I am so thankful.
Lots of Love,
Amber (Las Vegas)
praying, praying, praying...will be waiting for an update! I know it will be good news, Kayleigh will pull through with flying colors...she's a fighter!
I just wanted to say that I will be praying for Kayleigh and that she makes it thew everything tomorrow. I wish you all the best and I will check on her tomorrow. God bless you and Kayleigh.
From Kim
Kayleigh,
You should be on your way down to prepare for surgery soon. I am praying very hard for you and for the medical team that will be responsible for your care. I know that soon enough you will be happy, smiling and giggling again. Your family is so excited to get to the day that they FINALLY get to take you home.
Be strong, Kayleigh!
Love Elizabeth
Boston
praying that everything goes well during the surgery and after,
I am always praying for her. traching her will get her home faster! I wish I could hug you, I know you need it. She'll laugh with you soon.
I'm praying for her and your family right now! It's 7:15 my time..
With healing thoughts and prayers, Jara
Thoughts and prayers coming to you from Alabama! God is in control and he has his hand on Kayleigh! I'll be checking back later :)
Keeping you in our thoughts & prayers this morning as you take your next step in getting home.
Dear Lord,
This morning I pray for Your strong hand with Kayleigh's procedure. I lift her up to You in hope and faith. Give the surgeon strength and clear sight at this time. May he perform this procedure with You at his side. May You bless her parents as they travel this road praising You as they go. You are their strong tower. Kayleigh is a miracle, Your miracle Lord. Thank You for Your everlasting love! Amen.
It just breaks my heart to know that Kayleigh has to go through this! I know that it's best for her and you trust the doctors though!! i pray that she recovers FAST and is back to her joyful and happy self in no time!!!!!
Please know that Kayleigh is in my prayers!
Freemans
I love the new pics of Kayleigh!!! This moring before i took Addiosn in to preschool we said a specail pray for sweet Kayleigh and we know God has his hands wrapped around her during this surgery and has given the docs the knowledge that they need to get this done. Now we can start focusing on getting Kayleigh home in your arms.
I love seeing the new pics and keeping up with her growth. Thank God her surgery went well. She will continue to be in our prayers as we continue to ask God for a full recovery and look forward to reading about her coming home! God Bless you and your family.
Praying in New Braunfels, Texas
Those are wonderful pictures! Thank you for sharing. The picture with her holding your ring really shows just how much she has grown!! Yay Kayleigh!!!
I know her surgery is finished now (I read it on facebook), and I'm so happy that it went well!!! Hopefully she can recover quickly from his.
God Bless & Take Care!!
Heather, Joseph, & Bailey Alyse Woollard
Wetumpka, Alabama
My prayers are with you at this time. Best wishes! she's a fighter and will pull through this! God is watching her.
Praying for Kayleigh and you ALL!!!!
Amanda-SC
I'm glad everything went well with the surgery! As I recall from when Lily had her trach placed, she was looking and feeling pretty good after a day or two. That first day they kept her pretty quiet, but by day two or three, she was doing really well, better than I'd seen her in a month (because she'd been medically paralyzed for three weeks before her trach was placed). Will pray for Kayleigh's quick recovery as well. I have a feeling you'll really be able to see her flourish once the trach is in. It makes snuggling so much easier too!
God bless,
Robin
Keeping you in my prayers!
Baby Kayleigh, we are praying for you for a speedy recovery!!!! May God bless you now and always!!!!
I see she is out of surgery...I pray that this recovery is not so difficult on her and she is on her way home soon!
She'll be so happy to get her hands in her mouth without that pesky tube getting in the way!
Gooooo Kayleigh!!!
I am so glad the surgery went well, can't wait to see the pictures of her away and maybe see her full face?
I am praying that everything go smoothly!
YAY!! So glad that it went well. Praying for a speedy recovery and transition.
Meg
watching the updates on twitter...and i'm praying so much for this little tyke. after having sofie there only a year ago, it's fresh....and kayleigh is just one step closer to home! yeah. anxious to see her precious face again soon! love the updated pics!
Hoping and praying for Kayleigh's recovery. I know she will do great!
love and hugs from IL
Erika
So glad to hear the surgery went well! Love the new pictures of Kayleigh, she is getting so big and looks great! I'll continue to watch Twitter for updates as the day goes on.
We continue to pray for you. I have a feeling your going to be home soon- chasing that puppy around. Stay strong little one!
Laurie in SD
Just saw the tweet saying that she came out of the surgery well and that she is awake! Prayers are still coming your way.
Oh, I love all the pictures! The wedding band sure fits a little differently now, doesn't it?? Y'all are most definitely in our prayers today and every day!
Keep us posted!!! (you always do though)
We are so glad to hear Kayleigh's surgery went well....she is such a fighter! She is getting so big and now she is one step closer to being able to go home and start playing with all her toys! Love the new pics - always a joy to see her changing so much everyday. Thanks again for continuing to share this incredible journey with all of us with your beautiful daughter - she is definitely one of a kind :) Your family will continue to be in our prayers!
My son has a trach, he's had it for almost 8 months now. That is the only way he was going to be able to leave the NICU.
It's not really a big deal at all, not like I was afraid it would be. And now that he has it, we can go and do anything we want.
And he actually has an appt with Dr. Cotton in Cincinnati next week.
God Bless and good luck.
Hi
I'm happy that the surgery was okay.
I see that she is on the right way.
All my best wishes for you all.
i cant say in english all the feelings about to find your little world, and your little child.
i'll pray.
Very very best wishes from Hungary
im crying now.
You are a very strong peoples.
God bless you all.
I'm so glad Kayleigh did so well in surgery!! Aidan woke up at 6am this morning and wanted to be held - I think he was thinking of Kayleigh!! Give her big hugs and kisses from us!!
I have been reading your blog for a few weeks now and am just amazed by your courageousness and faith. I remind myself that my kids' little colds, are nothing like what you have been dealing with. Thank you for helping me put that into perspective. Still praying in Indiana! :)
It sounds like things went well. I am a teacher and our school server blocks me from being able to see the Twitter updates but by the comments everyone is making it sounds like she did well. I can't wait to get home and read the updates. She sure is one tough cookie!!
Just read your twitter and I so glad that her surgery went well! She is going to be so excited to be able to get her whole hand in her mouth with that tube out of the way!!
Can't wait to see pics. Praise God for a successful surgery!
THANK YOU JESUS FOR BRINGING KAYLEIGH OVER ANOTHER HURDLE!! GO GOD!!!
Praying@!!!!!
Will be praying! The new ring picture is AMAZING! Wow. She has grown so much! God is good!!
I found your site through MckMamma yesterday and was so amazed to see what a miracle God has performed in her life!
He has great plans for her... I know it!
~Grace
I found your blog a through MckMama about a week ago. Your daughter is a true blessing and your story inspires me so much! I can see the Lord working miracles through her everyday. I am so thankful that she is doing well and it amazes me to see her progress now compared to the first blog. She is precious! I will continue to pray for her daily and I will be so happy for the day she gets to go home with her family!
~LJ
Praying for you, you precious little miracle!!! :)
I just wanted to let you know that I have added your information to my Web site.
I hope that we get plenty of new stores so I can give y'all a great donation.
We'll keep your information up on Daisy Donates for as long as you need!
We'll be praying hard at our house here.
God bless you all.
We're praying for good results from this surgery...and fast healing.
~Blessings,
Jan & Tom
God bless sweet Kayleigh and her loving family.
She is way to precious. Your blog makeover looks fabulous..... and I am very much praying for this little girl now and tomorrow. Hang in there and be strong....
God Bless.
Many prayers being sent to your family. She is such a precious little one.
My heart breaks for you and your family. There is nothing like seeing your child happy and then knowing that they are going to be in pain again. Please know I am praying for peace and understanding through all of this!
Hi there.
Wow. I think I found your blog through God. I am the mom to a former 28 weeker myself. My son Tristan was 1 lb and 5.8 oz. He was in the NICU at East Tennessee Childrens Hospital for 5 long months. He had very premature lungs and came home on oxygen and also has a G-tube. Still has that actually. We have endured alot. I'd love to talk with you about your little one. You can't have to many preemie mommy friends. Stop by my blog God Gave Me You. Its currently under going construction.
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