10/24/08 (3:15pm) Surgery Update - Prayers Needed Badly!!!



The day started off good and the photo above is us seeing Kayleigh off to surgery at around 6:30AM. The procedure took a long 3 hours and after 2 hours, we started to get really antsy. Our main Neonantologist came in to check on us and told us things went well with the surgery. Kayleigh did have one of her pressure spells when they first inserted the catheter, but she quickly recovered. The spell that I am talking about was just like when she as recovering from the last bowel surgery and they needed to put her on nitric oxide.

Well, we got the news that Kayleigh's pressures are REACTIVE and they would then do the surgery to CLOSE the hole in her heart instead of banding it because she is at a size large enough for them to close it. I guess they will go less than 2000 grams if necessary. So that is wonderful, but then we were quickly nailed with some not so great news. Her lungs have been through hell and back and she may have done a lot of irreversible damage. That means, when they do the surgery to close the hole in her heart (VSD), her lungs might not allow the pressure to come down anyways. We won't know that until the surgery happens. The interesting news is that we found out Kayleigh has another hole in her heart that will play the same role as releasing built up pressure to equal everything out, but we still won't know how well that works until we get the surgery done.

After we got that news, we were told the bedside nurse would call us back shortly for us to come back. Thirty minutes quickly turned in to an hour and then to two hours. We were flipping out in a panic as we knew something was just not right. We finally got someone to spill the beans, but Kayleigh had a bad reaction coming back from the surgery. They said the Heparin used to thin Kayleigh's blood for the procedure had a negative effect on Kayleigh. The insertion point to the catheter was not closing up and was bleeding profusely, then blood started to come out of areas it should not be coming out of, such as her mouth. They gave her something to reverse the effect and thank God it helped. I do not know what happened back there, but Kayleigh looked like she went through a war zone. She had several different IV's in, a blood transfusion going on for the lost blood and she had blood on every instrument around. She was really puffy and swollen, and her body was as white as a ghost.

When we were able to get back there, she was in a much better state than 30 minutes prior. She was already coming down on her vent settings and she was sleeping peacefully. This was not a scene that any parent should ever see. Since we had Allyson and Brandon with us and because of RSV season, we had to go back separately. I lost it when I got back there and Aimee is in really bad shape right now.

This is where we need your prayers the most. Aimee spoke with the Cardiologist when she was back with Kayleigh. He is fearful that Kayleigh's window of opportunity is running short to fix the VSD to control these high levels of pressure in her lungs. They want to do it early next week, meaning she won't have a whole lot of time to recover from this drastic event that took place today. The problem we are having is Kayleigh's response to surgery and the doctors are most fearful of that. She did fine with the ROP surgery, but was not great with the bowel surgery, and now worse with the catheter procedure. Today's procedure was supposed to be a minor procedure, but Kayleigh must not be doing to well with the anesthesia and the effects it has on her body. Maybe she would not react that way if the hole in her heart was closed, but then there is no way of telling until then.

This next surgery to close the hole in her heart is going to be intense. They will have to use a lot of anesthesia. Her heart will have be stopped and she will be placed on both a heart and lung bypass. The doctors are fearful she might not survive the surgery, but she would pass away if she doesn't have it either. This has been a really tough morning for us and we need your support and prayers more than ever. It is so hard to think that we were just days away of coming home, and now we are faced with this.

I can't begin to describe the pain and the fear that we are feeling right now. All we can do is trust in the Lord that He knows what He is doing. Please pray for Kayleigh and for the specialists that are working on her right now and will be working on her for the surgery. We are supposed to hear from the main cardiologist who is doing the surgery sometime this weekend, hopefully sooner than later.
I will update you the moment I hear something.

Please pray for us and God Bless everyone!!!

The Freemans :(

70 comments:

MANDY said...

Adam and Amiee....

I have just recently found your wonderful website of Kayleigh what a strong little girl. I have been praying since I read your blog this morning and was hoping for the best for little Kayleigh. We will continue to pray.

South Dakota is praying for Kayleigh!!

Rachel said...

We are praying for you non-stop here in Minneso-cold. She's such a fighter and she won't let you down. If she can conquere what she's been through already I have no doubt she'll get through this also. I hope the docs don't let you wait too long on what's going on, that's the worst, "Not Knowing". Stay strong Kaleigh you can do it, show the doctors that they are wrong yet again:)

Jennifer said...

I am SO sorry that you are going through all of this. I am praying for a quick recovery time, and that kayleigh will be strong enough to get through the VSD procedure. God Bless all 5 of you.

jasonbradley said...

Jesus, we come humbly before your throne and ask that you would give the doctors wisdom and clarity as they prepare for this surgery. We ask that you would sustain little Kayleigh's body, that you would put a hedge of protection around her to give her strength, that she would not respond negatively to this next surgery. Please bless her with health and LIFE, Lord. We know you love her. And Lord Jesus, please bless Adam and Aimee and help them to cling to you in their suffering. In Jesus Name, Amen. 2 corinthians 1: 3Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. 5For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.

Anonymous said...

I AM PRAYING FOR YOU AND YOUR BEAUTIFUL BABY. REMEMBER THAT OUR LORD AND SAVIOUR IS ALWAYS WITH YOU. MY PRAYERS ARE WITH YOU. SHARON JACKSON MUNCIE IN.

Amber A said...

Oh I am so sorry about this. My heart is breaking for you guys. I will definatly be saying lots of extra prayers for Kayleigh, you, Aimee and your family.

Babyksmom05@yahoo.com

Hanna's Mommy said...

I have sat here writing and re-writing, trying to find the words to express what an amazing family you all are. Kayleigh is such an inspiration and the news that she will require yet another surgery is very upsetting. I can't imagine how you all must feel, especially being so close to seeing her finally come home. I will pray for Kayleigh, the surgeons, and the Freeman family for the best outcome: having your precious daughter come home to you all soon. Thank you for sharing your story with the world.

campbell9023 said...

Aimee and Adam I know you guys are going through hell right now. And you are doing the right thing by leaving it in the hands of the Lord that has brought Kayleigh through everything so far. I will pray that she will recover from this and be ready for her VSD surgery next week. I am so sorry that things have turned this way for you guys.

I believe that these last surgerys are her last hurdle before she is going home. I believe she will be just fine, she's just giving you guys a run for your money.

Jenn
jlcampbell2008@yahoo.com

Denise said...

I am praying for you all. I have followed Kayleigh's progress but haven't posted. I have been watching her grow and grow. She is just an amazing baby. I am so sorry for these recent events and I will be praying extra hard that this next surgery is a success and you will be bringing her home soon. She is just soooo darn cute!!

Big (((HUGS)))to you all. You are definitely in my thoughts and prayers daily.

Jyl Ikari said...

I've been reading your blogs & following your story eversince I found out about it through parents.com ...I have a daughter also & she just turned 1. I read your blog today & it brought tears to my eyes. I don't even want to think about my child ever going through this. I can't imagine the pain & struggles Kayleigh is going through & the pain you as a parent is going through. I wish, hope, & pray that Kayleigh will overcome this. I believe she WILL overcome this through the graces of God. May God bless your precious little miracle & her parents.

Anonymous said...

I am so sorry guys. We will be praying for you guys and Kayleigh. Lots of hugs from Arkansas.

Anonymous said...

My family and I are praying for you. As hard as it is to believe, God has a plan and he says he doesn't give us more than we can handle but boy does he test us. God works miracles and he did for me and I truly believe he will for you to. Keep your heads up and keep believing. God is ALWAYS listening.

Crystal said...

TO the dear freeman family,

I am praying soooo hard for your family right now and little Kayleigh. I hope that god looks over her and keeps her safe. I am sooo disappointed that the procedure was so hard for her but she is the toughest little girl that I know that times are challenging for you....Please know that my prayers and those of thousands are with you.

Crystal inCT

Astrid said...

Oh poor Freemann family, hang in there, hold strong!!!

Anonymous said...

I have eagerly checked the blog all day with an update! I am Morgan Kate's grandmother (you have her blog connected to Kayleigh's - Morgan Kate was born 15 weeks early). I have been praying throughout the day for you and Aimee and my prayers will continue. Hold tight to each other and lean on God for strength! Cast all your cares upon Him because He cares for you. 1 Peter 5:7

Keep the faith! Kathy from Orangeburg, SC

Janelle Cavanagh in AZ said...

Bless her little heart she is stronger thatn she may show at this current moment saving all her energy for the heart surgery. You are in my prayers as this hits very close to home (ilost a son at 6 weeks during open heart surgery) I pray all will go as planned Kayleigh is a strong litle girl!!! Kayleigh show your mommy and daddy how strong you are little one!!
With love ad prayers
Janelle in Arizona

Please view this website it might be someting you wouldliketo do with Kayleigh
www.weepiggies.com
it is a keepsake hnd or fot mold it is so neat I wish I had one from my son here or not jsut to remember how small he was.

april said...

I have never commented before, but I have been keeping up with your story since aimee was on the babycenter board. Kayleigh is a fighter and she has proven that time and time again since she has been born and even before. I have faith that she is going to pull out of this and every other hurdle that comes her way. She is a VERY strong little girl! I will keep praying for all of you like I have been! I wait for your updates every night to read them and find out how Kayleigh is. Again I say she is so strong and I pray everything will turn out great and will get to go home soon!!

Anonymous said...

http://www.hopeful-hearts.org/index.html

Anthony's Mommy said...

My prayers are with you guys. I wish I could give little Kayleigh a hug right now. I know you guys will get her through all this with the love you have for her. She is a very strong little girl!

Kim

Christy said...

Youre all in our thoughts and prayers.. Just remember it's Kayleigh! She is so resilient and she is a true miracle.. Keep your eyes to the Lord and know he has it in control-- when things seem the most out of our control-- he has a grasp on it all!

Hang in there, and thanks for keeping us updated!

Anonymous said...

My prayers are with you guys, she's just been through so much and still didn't give in. All we can do is hang in there and believe that she IS bigger now than before and just a bit more mature. May God's plan for Kayleigh be the same as yours.

Michelle

Anonymous said...

just saw today's update...you are all in my thoughts and prayers.

-Michael

Pennie said...

So sorry to learn that today was such a difficult one for all of you. My prayers are with you at this moment, and I especially lift Kayleigh up to God. He is the Divine Healer, remember that. God loves Kayleigh even more than you, her parents do, so know that He is going to do just the right thing for your little one.

I know you weren't expecting this today, but continue leaning on Jesus to carry you through these tough days ahead. In Him, you will find the strength you need to persevere.

Lots of love to your little angel!!

acutescrubnurse said...

oh my, just got done reading your recent post, with tears in my eyes of course!!! So sorry you had such a stressful day, and poor little Kayleigh, such a fighter.
We will be praying like crazy for you guys this weekend and the days to follow.
North Dakota Prayers going out to YOU!!!
Rita

Anonymous said...

prayers and love from Canada xo

Anonymous said...

Praying in Massachusetts. God bless.

Kira said...

Love and prayers from BC, Canada. Come on Kayleigh, you can do it!

Anonymous said...

Prayers heading in your direction. You must be terrified. She is such a fighter, she just has to fight a little longer and then the major trials will be over and she can come home to that beautiful nursery you made for her. Sending a hug from Houston.

-Beth

Beth E. said...

We are praying for your precious Kayleigh in Virginia!!!

Julie said...

Our thoughts are with Kayleigh, and her strong parents!!!

<3 The Floods, Oregon

Karen and Dean said...

I"m so sorry to hear you all had such a tough day. Please know that Kayleigh has lots of people praying so hard for her and for the entire Freeman family. Kayleigh is a strong little girl and GOD is right by her side. We will continue to pray for her!

Anonymous said...

So sorry that you have had such a difficult day. I was hoping to see much better news. This is just one more hurdle that we have to get over to get baby Kayleigh home. I do believe that God never gives us more than we can handle, but as a previous poster said, he really is testing us. He truly does work miracles and Kayleigh is such a perfect example. You guys are in and have been in my thoughts and prayers every since Aimee's very first post on BBC.

Lots of Love and Prayers for you, Aimee, baby Kayleigh, Allyson and Brandon and your families.

- Andrea in OH

Anonymous said...

my thoughts and prayers are with you guys more than ever tonight!

Heather and Travis said...

We pray for you and your amazing little girl Kayleigh each night. We will be saying extra prayers through the days to come. Kayleigh is a strong little girl and such an inspiration. I will be praying for Kayleigh's recovery to be speedy and that she will be prepared for the next surgery. You are all in our constant thoughts and prayers.
The Callahans

Los Bianchi Carrillo said...

We will be praying for Kayleigh non stop. I have no doubt in my heart that she will come out victorious from all her procedures, God is good and will always protect your baby!

Lorena de Bianchi
Guatemala

Erika said...

Kayleigh can and will do this I know this :0) She is so unbelievably strong. Iam sorry you guys ar facing this little hurdle. I know it must be hard as it is hard for even us as strangers when you post and the little lady is having a bad day. It needs to be done so you really dont have a choice. Worrying will not help the matter so instead try to have faith that this surgery simply means that your little pumpkin will be home sleeping in her own bed soon. Lots of big huge (((HUGS)))

Anonymous said...

Stay strong...talk to her the whole time you are with her, read her books, play music...blanket her in love that only you guys can imagine. You are doing your jobs and you are doing them VERY well.

Amy, I know you're a wreck...call and check on her every half hour if it makes you feel better. She's your daughter and you aren't bothering ANYONE with phone calls. Just hearing everything is calm may help. No one who hasn't had a child in the NICU can understand the workings of the NICU. You turn one corner and before you know it you hit a bump. It's OK...it's supposed to be like that in the NICU...and don't be surprised when she's a teenager and you're STILL up worrying about her.

As always, anxiously awaiting each and every post but not wanting to bother you...take care guys, I hope you have her home SOON!!!!!

XOXO

Heather, Dave, Alex & Chase

Anonymous said...

Kayleigh is truly an inspiration and so are her parents. I just wanted to say that I am praying for all of you. I also have a story of hope. My sister in law was also a one pound blessing from God. She was born weighing 17 ounces. She went through many surgeries as well. She is now a 25 year old healthy adult about to delivery her own daughter in a month. The doctors and technology are on Kayleigh's side. Keep your faith and know that miracles do happen and Kayleigh WILL be one of them!!
Good Luck & God Bless

ERICA said...

I had wrote so much stuff when my 2 yr old boy (my 31 weeker) Hit something on the computer and it all erased!! ;-p

I wish there was something I could say or do to take the pain and suffering away!! I know the exact feeling of why!
You know Kayleigh "loves" to prove the doctors wrong!! And I have faith and we will pray she will do it again!! She is an amazing little miracle!! She is a fighter and nothing can hold her back!
God Bless you Kayleigh!! He always has and he always will!! God Bless you both Aimee and Adam!! God is good!!

Erica
Mommy to 2 boys
1 who was a 31 weeker

Anonymous said...

Kayleigh will survive this -- God has plans for this precious little girl and she has done so much for so many people already. My heart aches for you and Aimee knowing the pain and fear you are experiencing today. We (and there are so many of us cyber prayer warriors) will be praying for her and you each and every day. Just cast your anxieties over to God - Kayleigh is in His hands and God IS in control of this. Just take each day as it comes and try not to worry about what tomorrow may bring.
I feel that Kayleigh will bring endless smiles to people's faces for YEARS to come! I just look at her and smile!
Keep the Faith!
Karen
Mom of four - Cincinnati

Anonymous said...

Stay story. Kayleigh is such a beautiful little girl. I will pray for her health and for your family. God bless

Kristin said...

I've been following your blog religiously, and was so scared when I saw this update. I've been thinking of you so much all day today, and can't stop...I've been saying prayers all day, and am sure the Lord will take care of your sweet little Kayleigh! Look what he's done to this point - why would he stop providing now? Just put your trust in Him and you'll all make it through this - maybe a few more gray hairs, but you'll make it!
I can't wait for another update - hopefully it's a great one!

Sarah J. said...

Sending prayer from Ohio. My heart is hurting for all of you. Stay strong little girl. We're all fighting for you!

lifting all of you up in prayer.
SarahJ.

Carly Nicole Elliotte My Micro Preemie said...

As always you guys are in my prayers. But I will definatley be thinking and praying more for your little girl! God is stronger than our burdens!!! Just lay it at his feet and He will pull you through!

(((((HUGS)))))

In Christ,
Rachel

YVETTE said...

Praying, praying!!

gloryrevealed said...

We'll be praying for you this weekend. Enjoy every moment with your sweet daughter.

-Sara

zzzzbaby from bbc said...

Kayleigh has been such a fighter through all of this, I know she will continue to do amazing things. She's your miracle baby, right?

I'm so sorry that today was rough on all of you. I'll be praying for you guys to have extra strength and peace right now.

David said...

Adam and Aimee,
Trust in the lord. He is a giving and loving God. I know this for he gave my wife and I a little miricle also. My daughter was born in april of 07 at 25 weeks and 439grams. We spent 158 days in the NICU. I know it is very difficult but God is good and trust in your doctors. WE will pray for Kayleigh and the two of you. God Bless
David
Seattle Area

Paula L. said...

Aimee and Adam,
I wanted to let you know that I heard about Kayleigh's ordeal and I am thinking of and praying for you all. Kayleigh is a fiesty little one, so hang in there. I am working tonight (Fri.) and will get over to check on her. You both take care...
Paula (Kayleigh's NPCN primary RN)

Anonymous said...

Thank you Kaleigh for reminding me that Faith is believing what you can not see. I believe you will be sleeping in your pretty bedroom soon. I can't see it yet, but I have faith.

Stay strong Adam and Aimee and keep the faith.


Prayers from Moyock, NC

Stephanie, Mike, Alana and Amber

Sarah Furlough said...

From one micropreemie mom to another, I am praying for Kayleigh. May God continue to hold you and keep you all!

Anonymous said...

I was so sad this morning when I read the news but I know that Everything is going to be ok.Kayleigh is so strong and she is going to pass this obstacle.You guys have just to be strong like her,I know that is not easy,but God is with her holding her hand and He is taking care of her.I'm praying for all this finish soon and she can go home and enjoy the great parents that she has.
God bless you and your little angel.
Carolina.Anniston,Al.

Denise said...

Wow, I don't even know what to say, seriously, I am at a loss. just know we love you guys and are praying!

Oh God, I call upon you right now to be with the freemans during this incredibly hard time. I pray that your peace comes over them and I especially pray for their beautiful daughter Kayleigh. God, I don't know your will, none of us do, but I pray that you continue to hold this precious life in your hands and whatever you will is wih her life, I pray, oh God, i pray that you give the Freeman's peace and understanding!

In your beautiful name I pray, Amen!!!

Anonymous said...

Adam and Aimee,

I found out about Kayleigh's story through the Joye's blog. I just found your site last night. I'm praying for Kayleigh as well as you both. Stay strong. Praying that God will allow the "sun to stand still" for Kayleigh like he did for Adleigh and Lianna. I'm a former premie that was born at 30 weeks 26 years ago. I'm a true miracle baby and I know that Kayleigh will be one too. She already is.

Jessica

Charlotte NC area

Anonymous said...

On my knees in North Dakota praying from Him to once again provide K. with his healing powers.

Heidi

Keri said...

We are following your story here in NH and are praying for the best for your and little Kayleigh. She is such a miracle and I know she's a fighter...

Oh, most gracious God, please look down upon little Kayleigh and her family today and in the days to come and do your best to keep her making the progress we know she can. In your loving name, Amen.

Cherilynn from British Columbia said...

I was really hoping for a positive post when I came onto here this morning! Aimee & Adam I am so sorry that you are going through this! I am praying that God keep Kayleigh craddled in one hand and that he keeps you all supported with the other. And, with his third hand (why not!) that he keep it guiding the surgeons and doctors to be able to figure this thing out and help Kayleigh get through this.

Love & prayers to you and your family!

- Cherilynn

krkstin0821 from bbc said...

Many, many prayers being lifted up in Kayleigh's name. I have faith.

God Bless,
Kristin

Anonymous said...

First thing in the morning I turn on my computer and check to see how Little Miss Kayleigh is doing while I talk with my mom (aka Mammie) and she asks how she is doing. Kayleigh is a strong little girl, she will pull threw this and her upcoming surgeries. She is a little fighter. She is an amazing little girl.

Prayers are being said for all of you. Stay strong for her and each other.

Patricia (children Hali, Shane and Emma) and Mammie (Catherine)

T said...

It sounds like a horribly scary event & quite the rollercoaster ride from earlier in the week, yet I'm encouraged by those photos you posted just a few days ago of how far Kayleigh has come. I pray you have peace & resolution, that you are led to the right answers for your family & your daughter. Keep in mind we didn't even have nitric oxide therapy 10 yrs ago, if there is permanent damage that leads her to have pulmonary hypertension, new treatments are being perfected each year and you may have lots of time to learn what her body requires to thrive. You've already done that with much research & faith about her growth & feeding. I hope you can snuggle up with those precious images of her smiling on mommy's lap & replace some of your fearful images from the post-op complications... that you can find enough peace in your day to restore yourselves in God's loving grace. Hour by hour, day by day, you've made it through these struggles for months, you are not alone in your prayers, God's will be done.

The Duncan Clan said...

We are praying incessantly for Miss Kayleigh. I think about her constantly throughout the day and say a little prayer each time.

Anonymous said...

Freemans,

I go to Elevation and found your blog through Ferris Joye's..

You guys are in my prayers. I can't wait to read your next post saying that God has completely healed Kayleigh!

God Bless,
Sarah W.

Hilary C. G. said...

I found your story through Wade & Ferris Joye. My older sister knows them through church, and I wanted to let you know that I have been praying for their story and now yours so fervently. The picture of sweet Kayleigh's hand inside that ring is my laptop's background to remind me to pray each time I see it.

Your precious daughter is such a warrior, and I have been amazed by her story, and I am blessed by your patience and trust in God. I pray for the best for you all.

Michelle said...

I check Kayleigh's website every morning, and I had chills when I read yesterday's post. I am praying non-stop for your family. I hope God will comfort you during this tough journey, and show everyone that Kayleigh will continue to be one of God's little miracles.

GiGi said...

I am hoping and praying this is just Kayleighs way of getting attention and keeping her Nurses and Doctors on their toes.I am in super prayer mode. I have to admitt I am not a Happy Camper about having another surgery and do not know why they did not do all the heart at one time so she did not have to go under the anesthetics again knowing she had issues last time but I know they probley have their reasons and I certainly am not a doctor. OK I vented moving on! Can they try different Meds on the next surgery? Can You talk to the Anesthesiologist that is doing her surgery maybe they can find out what allergies she might have before then.I know I am a mess but I feel a un asked question is a bad question and God put me here for a reason. So I am asking.

Please God hold the Freemans in your arms close to your heart and heal Kayleigh's heart. Help her to gain strengh that she will need and help her to grow!AMEN

Anonymous said...

My heart is aching for the fear I feel in your words. I pray for your little girl several times a day, when I think of what you're going through. You have helped so many find faith and hope, I pray that you and Amy will find some for yourselves to pull you through this difficult time. Hope little Kayleigh is doing better today. Prayers as always, Leslie Johnson

Anonymous said...

Texas is praying for baby Kayleigh!!!!!!!

AliciaJohnson1983 said...

I will pray tonight before I go to sleep. Poor Kayleigh. Not now. She's been doing soo good. I will make sure all of my myspace friends pray for her as well. My deepest sympathy to you. :(

Alicia
Manistee, Mi

Jenn said...

I am an RN student and during some studying found your blog. I'll be passing along the link to our OB rotation instructors, other students in our RN program and friends. Preemies and their families are near and dear to my heart! Thank you for sharing your story with all of us!

My prayers go out to you and your beautiful family!

shannnah said...

prayers sent for your beautiful baby girl and for you guys...

prayers from michigan...