10/26/08 - Slow and Steady

That is the type progress Kayleigh is having right now. (Slow and Steady) She has come down from 20 to 5 on her nitric oxide and her oxygen is at 50%. Her blood pressure is still elevated, which is a major concern so they are going to keep working on bringing that number down. Her leg is looking better as it is not as dark purple as it was yesterday. Kayleigh is not as puffy/swollen as she was yesterday. They gave her some lasix and it has helped.

All that is great news, but Kayleigh is still heavily sedated because every time she wakes up, she desats really bad. Tonight, Kayleigh started to rustle around a little and dropped her sats to the lowest we have ever seen them. Her heart rate was around 70 beats per minute and her oxygen saturation was at 7 before she was bagged and her sats were brought up. It took a couple minutes to get them back up to normal. For those who have not experienced it, it a few minutes of holding your breath while watching and praying that the numbers start to go up. We feel bad sometimes because all we want to do is comfort her, but any kind of stimulation will cause her to spiral out of control. Last night was different because Aimee was able to hold her, but sometimes you have good days and bad days. I am just happy to see some progress today.

The surgery was scheduled for tomorrow, but it has been postponed. The surgeon came to Kayleigh's bedside to see her progress and she is in no way, shape, or form to be going into heart surgery tomorrow. They are flexible and will move her accordingly. We did speak with another doctor for a little while today and he is positive about the surgery, but knows that this will be Kayleigh's toughest challenge yet. We were told that Kayleigh could possibly be put on ECMO for a few days to give her heart a rest. An ECMO is a machine that works as the heart and lungs for Kayleigh. There will be tubes that draw blood by pumping it out of her body. The blood will divert through a machine that will clean and oxygenate the blood and then pump the blood back in to the body. Now how is that for technology!?!? This will give Kayleigh some more rest period through the first and critical week of recovery.

We did not meet with the heart surgeon today, but we will be meeting him tomorrow at 9:00 in the morning. We look forward to this meeting, not because we have a lot of questions, but for the sole purpose of hearing what he has to say about all this. The conversation will definitely strike up some more questions, but we are interested in hearing what his thoughts are about doing this in depth surgery on Kayleigh. We have complete faith in him, but the unknown is what is giving us the most stress. We want to know everything that is going on so we can try to relax. It is an interesting situation and I have been pondering it ever since I learned we were setting up a meeting with the heart surgeon. This guy who is about to work on my little girl is classified as one of the elite surgeons, right up there with brain surgeons. He has one of the most respected jobs in America or the world for that matter. His educational accomplishments are one of the best in the medical field and he has the knowledge and skills that God has blessed him with to save our sweet Kayleigh. I look forward to shaking his hand, not for the work he will do on my child, but for the work he has already done. He chose to use his God given intelligence to save lives. What an honorable man!

Aimee and I've been so wonderfully touched by generous people lately. We have been given a few gifts for Kayleigh, people are buying bracelets to support Kayleigh and one girl said she's going to talk to her principal at school to see if they can do something nice for Kayleigh as a whole. It just blows my mind how wonderful you all have been to us. I can't thank you enough for all the wonderful things you have done. I feel like God has tested our family and we are doing everything we can to pass that test by keeping our faith in Him, but I also feel like he has tested every single one of you. And you know what??? You ALL have passed that test in my book because of the support you have given Aimee and I. God calls us to love each other and to treat others the way we want to be treated, and every single one of you have done just that. We can't thank you enough!

You know, my whole purpose of blogging and sharing our story for everyone is to hopefully touch someone's life in a way that will change that person for the better. I am using my trials for the greatness of God. Some might call me a strong person, but I am not strong. I am actually at the weakest point of my life and only my faith in God is what keeps me strong. This verse explains it all too well.

2 Corinthians 12:9
“My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”


God Bless,

The Freemans :)

24 comments:

Jennifer Gonzalez said...

Hi there,
I was brought here by someone who left a message on my Myspace page saying that Kayleigh needed prayers. I am here for you. I will pray and pray for her. She is so precious. I have 4 children..16,11,2 and 13 months. My youngest two were born 9 weeks and 7 weeks early. My 2 year old was in the hospital for 3 weeks and my 1 year old for 1 week. We were so very blessed. They told us to expect all sorts of problems and that they would both be in the hospital for months...they weren't..God is good. Kayleigh has made it this far...I don't believe God brought her this far for nothing. God will not forsake her or you. I feel so privilaged to know Kayleigh's story and to be able to pray for her. Thank you. Jennifer

DANIELLE said...

I CAN'T STAND IT THAT KAYLEIGH HAS TO ENDURE ALL OF THIS. IN NO WAY CAN I IMAGINE WHAT YOU MUST BE GOING THROUGH. AS I SIT HERE AND TYPE THIS I AM WATCHING MY OWN DAUGHTER SLEEP. I PRAY THAT THAT YOU TO WILL BE ABLE TO DO THIS VERY SOON IN YOUR OWN HOME. THERE IS REALLY NOTHING I CAN SAY, SINCE I HAVE NEVER BEEN THROUGH ANYTHING LIKE THIS WITH ANY OF MY CHILDREN. JUST KNOW THAT I PRAY FOR KAYLEIGH AND HER WONDERFUL FAMILY EVERY DAY. I KNOW GOD IS WITH YOU. YOU HAVE DONE SUCH A WONDERFUL THING BY SHARING YOUR STORY. NOT ONLY IS KAYLEIGH SPECIAL BUT SO ARE YOU. GOD BLESS!

Anonymous said...

My love and prayers are with both of you and Kayleigh. Kayleigh is so beautiful. God will continue to give you strength during these difficult times.
Thank you for sharing your precious daughter with us. I pray that God will heal her little heart as she has touched so many hearts in the world.

Carol Herlong
Irmo, SC

Pennie, Michella, and Marissa said...

Sounds like you have a good attitude even through the trials you are facing now, Adam. How is Aimee today?

We all understand that you surely must be at your weakest point in life, but you couldn't have found a more appropriate scripture to remind us all how weak we really are, not just you.

Thank God for these physicians and nurses who are so highly educated and gifted. Thanks to these people for allowing themselves to be used as instruments of God.

Still keeping you, Aimee, and of course, sweet baby Kayleigh close to our hearts.

Hope you get some much needed rest tonight and will face tomorrow with a renewed spirit. Like the old hymn says, "I can face uncertain days, because He lives!"

Love,
Pennie

~Kayce said...

Adam and Aimee-
We are still praying for both of you and especially for little Kayleigh. I have never cheered harder for anyone in my life. I know that God is faithful and I know that He has great plans for Kayleigh. She is such a fighter. The two of you are also...don't stop now. What a perfect verse you shared today. I am so proud of you both. I am so grateful God allowed our lives to cross. Hold tight to God and to each other.

GiGi said...

I am soooo relieved that God is giving us more time to pray for this surgery. All day I have been praying for more time. I was on myspace all night and day today begging strangers that I knew had great hearts because they prey for others and emailing then individually to prey for Kayleigh.I was in a panic because it is Sunday and everyone at church is praying and I just needed to make sure Kayleigh's prayers would be heard. I am so glad we have Monday.I know God hears us but this makes me feel better.
I am also understanding why God did not give us this hurdle with our 3 preemies.I am not handling this very well.
Kayleigh is Lucky to have you guys!
God Please continue to give Aimee and Adam the strengh they need for all of their kids as well as for each other to get through this. God take care of her surgeon and allow him the rest he needs to be sharp and steady the day of her surgery.
Help Kayleigh to rest and grow and get the strengh she needs to have a great out come.AMEN

Lorna said...

God Bless you sweet Kayleigh. Here is a verse I taped on my 25 weekers isolette more then three years ago...

Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

Kayleigh, grow strong and soar like an eagle.

Adam and Aimee, Kayleigh and your family are in my thoughts and prayers

Los Bianchi Carrillo said...

Dear Aimee & Adam! Hang in there, nothing is impossible to our Lord! No matter how many odds are against you, there is nothing God can't do. Just believe, for it is true that when we are week then we are strong. Your little angel will pull through, she is strong and Jesus is holding on to her so worry no more. I know this is easier said than done because in situations like these we do tend to frustrate specially when your baby is the one in trouble but I speak from experience for our little Agustina is with us today because of faith and constant prayer. God is faithful, He will not let you down!

God Bless the both of you and your three wonderful children!

Lorena de Biachi
Guatemala City, Guatemala

Crystal T. said...

I found your blog through a link off of Ferris Joye's blog on her two beautiful twins. Since I read about your beautiful little girl, I have checked up on her every day. And I pray for her everytime I think about her. Right now... my thoughts and prayers are for you, Aimee, and beautiful Kayleigh. Know that God has everything in control. God bless!

Rhonda said...

His Grace is enough!! I'm praying for your little one to get through this tough time!
Rhonda & Mommy of Luke

Anonymous said...

I'm continuing to keep Kayleigh in my prayers and I wish you the best with your meeting with the heart surgeon tomorrow.

I'd consider asking him how many times he has performed the procedure. An elite education is certainly important, but so is practice, practice, practice.

I did a fair amount of research for a family member who had a "heart baby." We discovered that there were 2 major factors determining outcomes 1) whether or not the surgery was performed by surgeon with alot of experience and 2) whether it was performed at a facility where that particular surgery was common. Bottom line is, you want someone who has done it 200 times as opposed to 20. Kayleigh has come so far and I can't wait to see photos of her at home!

Anonymous said...

My heart has been with you and your family since introduced to the blog yesterday. You made mention of several things today, which is why I would like to share with you. To give you any extra strength to get through..... I hope this is a good time...if not please forgive me.

At twenty-five I was diagnosed with ovarian cancer. I was also pregnant! I had miscarried a baby just months before this pregnancy. My husband and I wanted ten children. As you can imagine this was a test. I prayed...I prayed hard. I would ask for a sign that I was making all the right choices and I received them! I sought out the best of the best in GYN Oncologists and was blessed to find that top Doctor! She had been a professor at Stanford University and graduated over half of the then 500 doctors in the field. She was in Indy, about 45 minutes from my home and just moved to this area a few years prior. She had only seen two other cases in her career, as the condition was so rare. Her advise to guarantee my survival was to have a complete hysterectomy today or tomorrow...the baby would not survive. I begged for any other options. I asked her if we could go week to week. She reluctantly agreed, providing I get ultrasounds on Tuesdays and Thursdays. The goal was to get to 27 weeks. I saw her at 14 weeks and upon the exam, she expressed,"she would be holding my baby up close and personal real soon." Just four days later I had reached the limit. I had fallen on the floor in the bathroom, alone. The phone rang. I had just barely enough strength to reach it. One of my brothers had come to town to surprise me. All I could say to him is get here when you can. Little did he know he would be taking me to the hospital. She could not operate on me right away. Many of my levels were too low and had to be stabilized. Finally, On a Friday at 6pm my levels were OK. She was there with a team of surgeons to assist. They went in and she held my unborn child in the uterus with one hand while removing the ovarian cancer with the other. The surgery was a success and the baby was carried to term.

I tell you this to hopefully give you hope. Dr. Sorriero told me five years ago the baby would have not survived and ten years you both would not have survived. This was ELEVEN YEARS AGO! God has blessed our medical professionals with the knowledge, to mend and heal what used to be the impossible. Gather your strength from God and others will be there for you.....as they are.

God bless you both and your family during this time and give you peace.

Cathy from Noblesville Indiana

Anonymous said...

Dear Adam and Aimee! My name is Matthew and I just wanted to say what was on my mind after I saw your little girl Kayleigh and how she is Fighting to make it and looks better and better with each day to come! I am praying for her and you and your whole family will be in my prayers! I am a pre mature Baby also, I weighed 4 pounds 10 ounces, and 6 pounds 4 ounces when I came home from the hospital! I am 22 years old now and have no problems and good Health! I had repiratory problems growing up as a child and asthma, but it all went away when I was about 14 years old. I Know you are very blessed to have her and that She is a very strong girl from the way she looks in the pictures! I just wanted to contact you and wish you all good luck and to let you and Kayleigh know that me and my family are thinking about you all and you are in our prayers! Take care and God Bless!! Matthew

Anonymous said...

Hey there you guys,
Well we have been gone with Bob and Joyce in Mexico for a week and got back last night. I have been spending all night getting caught up with Kayleigh and what's happening. First it was so many ups and good news then the surgery for the cath and tough times. I really can't even begin to imagine what you guys have to be feeling and dealing with right now.
I wish so much I could come over and give you both a huge HUG and tell you it will all be okay. But as you said GOD has his hands and heart wrapped tightly around Kayleigh and knows what is best. I and the rest of us are all praying for you guys round the clock. I can't stop thinking of you for 1 second. Please stay strong and please right now give each other a hug from me to one another! We love you all so much. Your strength is beyond any from a parent I have ever seen! All our love and prayers for you and sweet baby Kayleigh.

Love, Rachel, Matt,Josh and Charlie

Anonymous said...

Adam and Aimee,

You do not know how much your family has touched my life, as well as so many. Every night I give my children a little extra cuddling for Kayleigh. I can't imagine not having them in my home with me, and I'm so ready for your little baby girl to come home to you. Little Kayleigh has taught me more about faith and hope in these four months then I could learn in many years. She is such a strong little princess. I worry so much about her every night, but I know with faith that she will pull through. I know that life throws us hard balls, but they are all lessons learned like you said. Its sad when our kids are our tests, but that only makes us stronger. Someday Kayleigh will still be teaching others about how wonderful God is because she is such a miracle. She will be sharing her story and touching lives for many, many years to come. Your family is truly amazing, and you are a blessed man. You have already reached your goal as touching so many lives...keep it up.

Praying for Kayleigh,
Nikki

Anonymous said...

Dear Adam and Aimee
Know that your little girl is in the hearts and prayers of so many people. Children are such a blessing and you certainly have a precious baby. I can't wait to see pictures from her first birthday bash!!!
May God bless you and your family. Stay strong.

Anonymous said...

Dear Aimee & Adam~
I just wanted to let you know that your family is in my thoughts and prayers. As I got to work this morning I checked on Miss Kayleigh's events over the weekend and tears started streaming down my face. I cant imagine what you are going through besides being a parent myself of 2 boys. I have sent out prayer requests to everyone I can think of for your little girl! In God all things are possible!

God Bless your family & help heal Miss Kayleigh!!!
Brandy in Kansas

Anonymous said...

Adam, Aimee and Princess Kayleigh:

Just wanted to drop by and say that I've been thinking about you all. Praying...constantly. Hopefully the heart doctor will have positive things to say tomorrow. And you know they always say "slow and steady wins the race."


Kayleigh's Kentucky prayer warrior
Kelly

annaandallysmom said...

I wish I had words that I could say that would make it better, but I don't. Just know that I am praying very hard for your precious baby and she is on my mind at all times. I pray that God will also strengthen you and Amy through this difficult time.

God Bless,
Monica

Anonymous said...

HOpefully she will be able to grow some more. She was doing so well before this procedure. I understand they have to do the surgery soon, but I hope she recovers quick enough to grow some more. I think about you all every day and check in every morning to see how she is progressing. Please tell Kayleigh she is loved by so many of us out here in the cyberworld who have never met you all, but we care so much about you all. Stay strong and take care of yourselves too -- you and Aimee need to get rest to stay strong for her. Just keep focusing on her homecoming! She is the strongest baby I know!
Karen
Cincinnati

Valerie Wamboldt said...

Prayers from Nova Scotia for you guys, I love coming home from work to see how Kayleigh is doing. I am the Mom of 2 children, my oldest, Josh, was born with Spina Bifida and Hydrocephalus. He's now 15 and has had 15 operations. {{{HUGS}}}

Valerie

Sarah, NZ said...

Hi,
I can't imagine what you must beo going through right now. all i can do is send my prayers your way along with everyone else on here. its good they are giving kayleigh more time to recover for her heart surgery and it sound like you have a fantastic surgeon, between him and God your little girl is in great hands!
Much Love,
Sarah
witch_e_1@hotmail.com

Ps am i able to buy one of kayleighs lovely bracelets and have it sent to New Zealand? I'd love to have one.

Crystal said...

Adam and Aimee,

I wanted to let you know that this little angel that you have has been in my prayers full time this week! This weekend at church I prayed extra hard for her! She has amazed me since all the way back at the baby center! I have been a faithful fan ever since my dear friend Jenn Cambell introuduced me to your family. When you do not get a chance to update before I go to bed, I check on kayleigh after my daughter's 3 am feeding. I want you to know that you three have amazed me more than any family that I have known. The love that you have for each other as a couple is what I think holds this all together and in your weakness your stongest alli, besides for the lord has been each other! I hope that Kayleigh's sister and brother are hanging tough also. I cannot wait for you to post the picture that you take when ALL of you are in the pic! AT HOME!!! I have faith that Kayliegh's miracle body can over come these last few hurdles the largest yet! I know that she has the whole world praying for her and she has in fact touched so many lives! I am always amazed reading the comments as there are new people here each day! Each and every moment that Kayleigh has been here has been sooooo important and momumental! The lord works wonders and she is one of them. Little Kayleigh rest up and rest easy so that mommy and daddy can rest too and be there for you fully as always.

Love,
Crystal in CT
crissie198334@aol.com

Anonymous said...

Adam and Aimee,

I wanted to let you know that this little angel that you have has been in my prayers full time this week! This weekend at church I prayed extra hard for her! She has amazed me since all the way back at the baby center! I have been a faithful fan ever since my dear friend Jenn Cambell introuduced me to your family. When you do not get a chance to update before I go to bed, I check on kayleigh after my daughter's 3 am feeding. I want you to know that you three have amazed me more than any family that I have known. The love that you have for each other as a couple is what I think holds this all together and in your weakness your stongest alli, besides for the lord has been each other! I hope that Kayleigh's sister and brother are hanging tough also. I cannot wait for you to post the picture that you take when ALL of you are in the pic! AT HOME!!! I have faith that Kayliegh's miracle body can over come these last few hurdles the largest yet! I know that she has the whole world praying for her and she has in fact touched so many lives! I am always amazed reading the comments as there are new people here each day! Each and every moment that Kayleigh has been here has been sooooo important and momumental! The lord works wonders and she is one of them. Little Kayleigh rest up and rest easy so that mommy and daddy can rest too and be there for you fully as always.

Love,
Crystal in CT