10/30/08 - Almost There!!!

to the Nasal Cannula.

Card from Grandma & Pa Pa "G"

Wow, what progress Kayleigh has since we left last night! She is now off the Nitric Oxide and they removed the vent breathing tube and put her on the nasal cannula. She has not had any major desats since before Aimee's magic touch last night. That is awesome!!! I am just amazed at her turn around and it definitely makes me feel even that much more comfortable with her going in to heart surgery next week. They are still leaning more towards Tuesday, so that gives Kayleigh several more days to recover. Thank goodness they are not going to push to move it earlier.

They decided to start feeding Kayleigh yesterday and even though she has had a few aspirates with every other feeding, they have decided to increase her ml's even more. Since her bowel sounds are good and her belly is soft, it certainly won't hurt anything. Her weight has been fluctuating because of water retention and the lasix (diuretic). Tonight, she weighed in at 1840 grams which is right at 4 pounds. Let's just hope it doesn't drop from that.

Besides the great progress she is having, we really enjoyed our time with her today. It was a little rocky at first because she had not yet come off the vent and she was really showing signs of the vent tube irritating her throat. She was practically gagging the whole time I held her and I had to constantly adjust her positioning so she was more comfortable. When the respiratory nurse came in, removed her tube and put Kayleigh on the nasal cannula, it made all the difference. We were able to spend a few minutes with her before we left to go pick up Allyson and Brandon from school. Kayleigh was so excited and just seemed to act like her normal self again. We were so happy when we left the NICU, we just smiled all the way home. We are still smiling like crazy! ha-ha.

Today was a great day for Kayleigh and I am just so thankful because she really went through some rough times this past week. It was as if Kayleigh was a totally different person when she was sick and to see her awake and active now just relieves so much stress. A ton of bricks have been lifted from our backs today and I just hope she continues to make progress throughout the rest of the week. It is really heartbreaking to know she fought so hard to recover from this past procedure, only to have to do it all over again soon. Although, while some may say it is horrible that she has no idea what is about to happen, others might think this traumatic situation is better left unknown. She is going to have some battle wounds, but we will call them her love scars :)

Thank you all again for your support and please continue to pray for Kayleigh's upcoming surgery.

God Bless,

The Freemans :)


Anonymous said...

Wow! She's looking great! Her little face has filled in and she has cute little chubby cheeks! Congrats on coming off the vent and doing better. You guys are always in my prayers...your family is such an inspiration to me and Kayleigh's stength is amazing! I can't wait for my bracelet to get here!

Jennifer in NM said...

Aimee and Adam,

Wow she looked so happy right now. I will of course continue praying for her and the upcoming battle. I just wanted to tell you what someone once told me:

"Your scars are where you have been, the battles you have been through and won, and are roadmaps of your life."

That came from my husband and it makes me smile when I look at not only my scars but he also used it for the horrendous stretch marks I have gotten.

Kayleigh, keep up the great recovery and you stay strong next Tuesday. I will continue to pray for you, you just keep proving the doctors wrong!


Unknown said...

To Little Kayleigh:

KEEP UP THE GOOD WORK GIRL!! I've been following your story and believe that you are an incredible little girl...you are such a fighter! Keep going, stay strong and know that we are all praying for and standing behind you! Trust that our good Lord is watching over you and helping you to heal. You will continue to be in prayers. Keri, NH

Jennifer said...

Aimee and Adam (and rest of the fam), it does everyone's hearts good to be reminded that this gift comes from our God. The gift of your daughter has blessed many.

My favorite bible verse ever is:

The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:28-31

I believe that Kayleigh is soaring high right now on the wings of eagles as are you her chosen parents. God knew what He was doing when He placed Kayleigh into your loving hands.

May you all soar and never grow weary. God will guide you and give you strenghth.

Elkins5 said...

WOOOHOOO! WOOOOHOOO! WOOOOHOOO! We all just did a BIG happy dance. Thank you Kayleigh! Sweet dreams baby girl! Happy 1st Halloween "Pumpkin"!

Elkins 5

Anonymous said...

WOW! There is nothing in the world like mommy medicine!!!!!!

Anonymous said...

AW! She's getting to be a regular chunky punkin! She looks great. She just neede Aimee's magic to get her on the right track. What baby doesn't thrive on their momma's love?

I'm glad she's feeling better. She's such a strong girl. I bet she will make it through next week with flying colors!

Anonymous said...

Yeahhhhhhh!!!!!!! Our prayers are working, God is helping her and giving her strength!!! I was so excited to come on here this morning and see those wonderful pictures, she looks sooooo much better. I will continue to pray for her many times a day!
With love from Southern NH!

Unknown said...

There she is :0) She looks great. Lots of Prayers for Tuesday. I know it is hard to look at her and feel sad about her upcoming surgery but it would be much more heartbreaking if she were to miss her window or not have been given the opportunity to have the surgery at all. Just another bump in the road then we are on to the smooth sailing. You cant enjoy the sun without the rain. Little Miss Kayleigh will be the sun in alot of peoples lives.

Anonymous said...

I'm so happy to see she is feeling more like herself again! I see some "chunk" in those cheeks these days too :) Hooray for that. We will continue to pray for Kayleigh's surgery, recovery and homecoming. I just know it's all going to turn out fine! You call her scars love scars, Ty (my 27 wkr w/a pda scar from the middle of his back to just under his nipple) calls his a shark bite- hey, whatever works right?! Take care.
Christy in IL

Anonymous said...

like i have mentioned beofre in my comments, your story has really helped me through my miscarriage. it gave me something to look forward to each day. now, i have some good news for you. i am pregnant again. it is still very soon so pray pray pray. just thought i'd let you know!

kayleigh is such an amazing baby. her connection with aimee is wonderful. i love hearing how it helped kayleigh when aimee held and comforted her. the connection between a mother and a child is so undescribable. congrats on all the progress and wellness to come. Goodluck on the upcoming surgery. i will be praying for her.


Anonymous said...

Hi Adam
My name is Stacey and I have been reading Kayleigh's blog now for about 2 months. The first thing I do in the morning is go to her blog and see how she's doing. My 8 yr old daughter Ashleigh is also following Kayleigh's progress. She asks me EVERY morning "mama, how's Kayleigh doing today" and I go to the blog and let her see the pictures. She says " She's SO beautiful isn't she mom?" When she has her little friends over, she asks if it would be alright to show them Kayleigh's pictures :) I sat down with Ash a few days ago and told her that Kayleigh has to have heart surgery...my daughter had open heart surgery when she was 3 1/2....she said "awwww her heart is broken too?" Back when Ashleigh had heart surgery, before she went in she was telling people that her heart was broken so she had to have surgery to fix it....when she recovered from it, when someone would ask about her scar she would say "well, my heart was broken BUT ITS FIXED NOW!!!" Anyways, I told Ash I was going to email you and let you know that Kayleigh is in our hearts every day, we pray in the morning as we both read her blog and we pray at night before we go to bed. Ashleigh wants me to tell you " please give Kayleigh a kiss and a hug from her friend in Massachusetts...WE LOVE YOU KAYLEIGH !!" Take Care Freemans :)

Anonymous said...

God is amazing!! I've read your blog for almost 4 months now. I found your blog from Ferris Joye's blog. I don't know either of you but I have felt lead to pray for Kayleigh and the Joye twins. I just read Ferris's blog a few minutes ago and if you have not read her recent blog on pray I would encourage you to do so. I'm still praying for you and Kayleigh and can't wait to see what God will do next.

Anonymous said...

YEAH FOR NASAL CANNULAS! I can only imagine how truly unhappy she was on that yucky vent. Happy Halloween Miss Kayleigh (and Adam, Aimee Alyson, Brandon). Hope today is a good day.

Still praying for good health, rest, strength, and growth.

Kayleigh's Kentucky Prayer Warrior
Kelly Sheree

Anonymous said...

Hello you do not know me i saw your blog link on a facebook group but i wanted to let you know that myself and family will pray that Kayleigh continues to do well.

I myself had a near death exp back in January 2005 when i delivered my triplets 11weeks by emergency c-section(the Labour and Delivery nurses gave me 8 litres too much IV fluids which cause me to hemorrhage and have Pulmanory Edema),all four of us almost died on the OR table thankfully the good Lord was watching over us!I was sent to ICU for four days after they were born with a breathing tube,my boys which are identical spent 48days and my daughter 72days in NICU(not as long as Kayleigh)but i know what your doing through with the many ups and downs that a preemie and NICU can give you.

I too had an older child but she was 3 at the time nad wasn't really sure what was going on.

Unknown said...

Way to go Kayleigh! Keep it up, big girl! She just needed her Mama!! I'm so happy to hear how well she is recovering...

Anonymous said...

Aimee and Adam,
Wow! Little Miss Priss looks so good! I can't tell you how excited I am to hear that Kayleigh is doing so well! She is such a strong little girl, and she knows she had a purpose here and isn't going anywhere! I say a little prayer for you guys every day, and am looking forward to her coming back to play with us in NPCN! Hang in there, and tell Kayleigh that her favorite NPCN nurse can't wait to spoil her some more!
Take care,
Paula L.

Judi English and Uncle John Wojtowicz said...

Wonderful, Happy Halloween to you dear ones, and to the precious baby so many of us pray for constantly. I hope the kids don't wear you out too much from eating their sugary bounties. Shelly and Josh went to Tenn. today to be at his gr'ma's bedside so please pray for their safety.Gods peace to you. JUDI

GiGi said...

With the grace of God. Just think next year she will be crawling after her brother and sister chasing them for their haul.
I pray that as soon as she gets home to you guys you will be amazed at how fast she catches up to her friends and grows grows grows. God has already shown us amazing growth and I thank him for that.I am so glad she made it past the 4 pound mark ! YEAH
Please God let her rest and grow so she will be ready to have all the energy she needs for her upcoming surgery. Amen