12/15/08 - One Last Chance

What do you do when there are no more options? What do you do when time is running out? What do you do when your daughter is dying and there is nothing you can do to help her? There is no research, there are no studies, and there is no other proven medication. The only thing left is God.

Right now, Kayleigh is completely 100% in the hands of God and 5% of that is in the "trial" medicine that the doctors feel will be a last chance option to help her pulmonary hypertension. "The last tool in the toolbox", which is what one of our doctors said tonight. It is a medication that does the same thing that oxygen, nitric oxide, Viagra and prosticyclin does, but those things haven't proven to fix things either. All these options/medications are supposed to open up the air sacs in the lungs, somewhat like an asthma attack, but your dealing with pressures from the heart and lungs and whether or not the body is going to get its oxygenated blood to survive.

One big problem with this new medication is that it takes a month before it proves to work at all and I don't think we have a month to spare because of Kayleigh's troublesome prognosis starting last night. Right now, the four medications are keeping Kayleigh alive as her sats will drop quickly when any of them are taken away. There is no telling if this medication will help, but it is a last ditch effort. The doctors don't feel confident about it since the other four "top choices" haven't fixed her hypertension.

Besides the medication, the doctors are fearing that Kayleigh's pressures are becoming "fixed" (stuck) or already fixed. When the pressures become fixed, they rise but don't fall. So after that urinary tract infection, her pressures rose to 68, but have not dropped below that mark in over 2 weeks. That only means, she has to outgrow this before her chances become better, which is a really long shot. We were hoping and praying that her pressures would stay reactive long enough to come down before we feared they would become fixed at such a high level, but unfortunately they didn't and her levels right now are too high for her little body.

One of three things are going to happen. 1) This last chance medication is going to miraculously work. 2) She will have one final desat that she won't be able to come out of. 3) Her heart will become overwhelmed by the pressure it's not supposed to handle and give up.

As I said above, this last chance medication takes up to a month to prove if it is working and I don't think we have a month according to Kayleigh's current prognosis. Last night, Kayleigh started to desat without agitation. She would turn a shade of purple and drop her oxygen saturation in to the 70's - 80s, but take a long time to pull herself out of it. The odd thing is, which she hasn't done before, is she is awake and not showing any signs of irritability. The doctor explained it as the pressures could be getting bad enough to where she doesn't have to be irritated anymore for her saturation levels to drop. She is currently on 100% oxygen at 6 liters of flow, which is the max. She may be placed on the vent, but since she is maxed out on every other medication, it won't help. My fear is the first hypertensive episode that she has or when she does get irritated, she may not be able to pull out of it.

All we can do is put it is God's hands and trust that He knows what He is doing. This has truly been one of the hardest days in our lives through this journey, not to mention that today is my "not so happy" birthday. Aimee and I know that Kayleigh has beaten the odds many many times before and we are doing our best to stay as positive as possible. I feel in my gut that we are all going to need a lot more prayers for Kayleigh to make it through this hurdle, so all we can ask is that everyone pray harder than you ever have before.

If God decides it is time for Kayleigh to come home, then please pray that your life can find hope through her story.

God Bless and please help pray,

The Freemans :)


Angie said...

my heart is with u and ur family....i will pray extra hard for her tonight...

Crissie said...

ADam and amiee,

I am so sorry that times are very hard right now. I am praying hard for you and your family and little Kayleigh.

God bless you all.

Crystal in CT

Anonymous said...

Adam, I am so depressed after reading this. Just know that so many of us out here in the cyberworld share in your joy and in your worries.
I truly hope the doctors are wrong and that Kayleigh will have more time to grow and that the new medication will work. The doctors were wrong when Aimee was pregnant and said she would never make it into this world. She has proven them wrong time and time again.

She has impacted my life so much in that I pray so much more. I used to forget to pray sometimes.
I rarely forget to pray anymore because I have to make sure I pray for her at night and she makes me start my praying and then I pray for others as well. Thank you for that Kayleigh. Her life has strengthened my faith and relationship with God. You guys will forever be in my prayers.

She is truly in God's hands -- there are no other better hands to be in. I know you want her with you and we all want her with you as well. We all just have to wait and pray and pray and see what God has in store.

I hope we can read a month from now that a miracle has occurred again and that medication works and that she is cooing louder than ever. This page will just be another hurdle she overcame.

Praying hard for all you guys especially sweet precious Kayleigh.

With love and prayers,
cincymomof4 and your Facebook prayer warrior too

Heather said...

Oh Adam...I am SO sorry and will being praying for her and you guys. Please know you have prayer warriors in Raleigh that are thinking and praying for you.

Kimberly (Anthony's Mom) said...

Kayleigh will be in my prayers tonight! And so will you two!


Becky said...

Oh Adam. I am going to pass this along to everyone I know. God be with you and Kayleigh.

Still loving and praying down in Spartanburg,

ned said...

Hi guys. This is Brinson's mommy Lisa. I just want you to know that we are praying for you. I remember going through an episode with Brin where she had the high pressures and would de-sat at the drop of the hat. Once when we were with her she clamped down and I actually had to leave the unit hysterical (and I'm a nurse..go figure). Ned and I know what a journey you're going through. It's very tough. I am hoping that Kayleigh will pull through this. Miracles do happen...Brinson is our proof of that. If God decides to take Kayleigh from this earth, know that Brinson's little brother Cooper will be there to greet her in Heaven. *Hugs*

Anonymous said...

Tonight's entry has me fighting back tears. I am so sorry that you all are hitting such a road block in Kayleigh't fight to live. I could not imagine being able to have the strength that your family has had through this. I will be praying hard and often that Kayleigh pulls through this and the doctors are wrong. God has already worked so many miracles for Kayleigh and I pray he has more in store for her. God Bless you all. Prayers and kisses for Kayleigh.

Anonymous said...

Dear Adam and Aimee, I have been following your story for a couple months now, as we too have a "heart baby". I know the feelings of loss of hope that you have. Our daughter just got out of her 2nd surgery. She had heart surgery at 3 weeks old, and now she is 2.5 months and had stomach surgery where they had to tact down her intestines and take out her appendix as it was on the wrong side....(they don't want to have her deal with appendisitis when she's older and dr's not know about it because it's on the wrong side of her body).

She went into surgery this morning and came out around 1pm. Since then she has had 3 episodes and we too are in the state of wondering if she'll make it through this. We lost her twin sister and can't imagine now losing her.

I'm telling you this because I want you to know that you aren't alone in your feelings. My twins were born on my husbands birthday. One was stillborn. Birthdays aren't so fun anymore, I know. Please remember who God is and trust Him completely. My sister once told me to trust God. Not for the outcome, but just to trust Him. It made SO much sense to me. I can't be only trusting Jesus for the outcome of these situations. I have to trust Him for just being the almighty God that He is.

I'm praying for you guys tonight. Praying SO hard for Kayleigh. If you think about it, say an extra prayer for Veiyah tonight.

Our our love,

Jeremy and Ani

Anonymous said...

Happy Birthday Adam!! Best wishes to you!
I don't know what to say...... I am so sorry Kayleigh and you all have to go though this! I feel like what you said is just a dream. I know we will all feel what ever we want to feel! BUT..I will not stop giving up hope and faith with God regarding Kayleighs situation! I know this is a total different situation but I have to tell you this. My grandmother had several heartatacks. Her heart was not good at all! 7 yrs ago she had a heartatack where the doctors came to us and said my grandmother would not live more then 5-7 months the way her heart is working. My grandmother past away to our God in Feb. 2008 due to her heart! She beat all the odds that the doctors gave her and lived 7 more years!! I have faith and hope in our God that Kayleigh can and will beat all the odds. He is the only one who knows our true date of passing. She has amazed us through all of this and who knows I bet she will do it again! We love you Kayleigh and we know you can do this sweetie! Stay strong as my family, friends and I will stay strong also! God Bless You Kayleigh with Helath!! God Bless the Freemans!

Living With CES After Failed Tarlov Surgery said...

I am sending all my prayers your way for you, Amy and Kayleigh. I just keep thinking what a miracle she is to begin with, so I am praying for that miracle for you now, and believing that someone is watching over her :)


Anonymous said...

I sent out an email tonight to ALL my contacts asking them to pray for Kayleigh. If there is strength in numbers than Kayleigh definitely has lots of people on her side pulling for her... I know all that follow your blog love her and you and Aimee too.

With all my heart, all my hope and all my love,
Rebecca, Terry, Kenna, Cassie and Michael

Emily said...

I pray her pressures are not fixed and that this new medicine is just what she needs. I pray that you all will feel a peace in the midst of all of this chaos and will be able to enjoy every moment you have with Kayleigh despite what is going on.

I'm curious if they've talked about traching and mechanically ventilating her long term. My daughter was in a similar situation though her pulmonary hypertension wasn't quite as severe she developed something called Cor Pulmonale (right sided heart failure). Her pulmonologists jumped immediately to a trach and mechanical ventilation whenever her pressures got high because they said it was the only way to help her body out so she could outgrow the problem. I know every hospital has their own philosophy but you've never mentioned anything about a trach/long term ventilation and I know that they're keeping her on a high flow cannula and I didn't know if they had reasoning behind not giving her additional support to combat the pulmonary hypertension.

Heather Marie said...

I just said a very strong prayer for Kayleigh and you two. God will take care of everything! He is going to heal Kayleigh. We've seen so many miracles with your little angel already. God has big plans for your little girl :) I have hope that she will pull through this!

Cristi said...

I dont know why life has to have so much heartache and tough times. I do know that no matter what we serve a God who loves us and who is a God of miracles. He is the God who created this world from nothing, the same God who parted the sea, who brought Jesus to us through a virgin. It is to Him who we lift up prayers for Kaleigh. She is in mine. In His Name.

Rachelle said...

Prayers... so so so sssooo many prayers, and hugs, lots of them. Thinking of you all!

Tiffany said...

Your family will be in my prayers. Just remember "If God leads you to it, he will lead you through it".

Anonymous said...

Hi Adam and Aimee. First of all, happy birthday Adam. Secondly I am praying very hard for Kayleigh tonight.
I was just reading up on her condition and was wondering if the doctors are considering putting Kayleigh on ECMO, or if she has been on it before. I hope it will not come to that and that she will surprise us all with positive results soon.
I pray that this new medication works and that Kayleigh will outgrow this condition.

Unknown said...

Guys, I know how you feel right now. This is the hardest thing to go through. Not knowing is hard for parents. Kayleigh is a strong little girl and I know she gets it from you and Ammie. That's one good trait you've passed along!!!

I don't know what God's plan is. But what I do know is God never makes mistakes. God is in control of everything.

I pray for Kayleigh and your family daily. And will continue to. I will set aside time tonight especially for Kayleigh. Just me, Kayleigh and God!

Hugs to you all. Keep your head up and your faith high!

In Christ,

Anonymous said...

Dear Freeman Family,

Throught this entire journey I have been humbled and amazed at your faith in our Lord, and it has recharged within me my own faith in so many way...I pray that you feel the strength of so many praying for Kayleigh tonight throughout the country...you have given us this gift of allowing us into your life and introducing us to this amazingly strong little girl...we will now find OUR strength and pray harder than we ever have before for Kayleigh...
God Bless, Alexis Bailey (Michigan)

Molly said...

I can't imagine how you are feeling right now. My prayers and best wishes are with you and especially precious Kayleigh. You are an amazing family.

JaMean said...

My family and I will say prayers for you and little Kayleigh.

God Bless You AND Keep You.

Danielle said...

My prayers is for God to intervene and be with you all. May his will for your family be evident. I pray for peace, comfort, and healing for your sweet daughter. God bless you all...

Brittany said...

My prayers have been with you through this whole journey...but I will pray super hard for you tonight. There are never any words to say in situations like this to make things better but I just love how strong your faith is in God and I feel like he will help little Kayleigh pull through this. God bless you.

Gina Marie said...
This comment has been removed by the author.
Unknown said...

I am just brought to tears to hear this. I am praying so hard for her tonight and I just know it is God's will to have her beat this. Kayleigh is one tough little girl and I believe with all my heart that God will help her prevail. She is in God's hands and that is the best place at this moment. God will lead you through this.

With Love.

And so it begins..... said...

Our thoughts and prayers are with you!! Keep strong Kaleigh!! Show us another miracle, Tis the Season!!

Unknown said...

praying for you all.. keep up the good fight kayleigh!

Anonymous said...

Honestly, I feel like if Kayleigh dies, part of me will die too. I have grown to love that blessing from God as if she were my own child. I just hope and pray she lives, she is so beautiful and only deserves to feel happiness. At least if she does pass on, she will surely be in the arms of the Lord watching over you. I send my love to all of you and especially Kayleigh

Anonymous said...

I'll be prayer for Kayleigh tonight! I hope the new meds work there magic and the feisty lil girl of your's will be able to tell her husband one day about her long battle in the NICU!

In my thoughts and prayer,

Nikrhithokay said...

HI Adam and Aimee.
Kayleigh share my daughters name (although differet spelling) and if she has once ounce of my daughter determination I have faith in her strength to pull through this.
I want you to know just how far Kayleighs story has stretched..I live in Australia! A few weeks ago I put your blog button on my BabyCenter Australia posts and today when I posted asking for them to pray for Kayleigh I discovered that some of them have also been following your story after seeing the button...so you now have people all the way Down Under praying for Kayleigh to get well enough to come home... here is a link to the post... http://boards.babycenter.com.au/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=bcAUbclub200704&tid=3060
I also have a september baby and everyday I look at him and hope that you can being your baby home and enjoy her as I do Linkin.
Take Care guys, pull strenght from the knowledge that so many people are thinking of you word wide!

Anonymous said...

have been praying for your precious daughter - and I will continue to pray for God to heal her precious body. I also pray that He will give you peace in the middle of all of this.



Jennifer said...

I'm praying harder than ever for Kayleigh.

Anonymous said...

I will inform more of my friends and family to pray for you. I am so sorry that she is not resonding to treatment well. I am on blood thinners revatio(viagra) digoxion and tracleer for my stage 3 pulmonary hypertension. I do have a website about pulmonary hypertension you should take a look at it is www.phassociation.org it will help you out. I hope this helps also my cousin just had a preemie baby boy this morning and I told her about your story. I pray that she will respond to her trial treatment. God bless you.

Stephanie said...


You taught me that faith is believing what you can not see. After reading what the doctor's have said, I don't see how things could possibly get better, but I believe they will.

Love and prayers from Moyock

Stephanie said...

Happy Birthday Adam!

Anonymous said...

Praying for you tonight!

Anonymous said...

We pray for your family and your sweet baby Kayleigh. I will light a candle for your angel. God be with you!!


Stephanie said...

Jackie mentioned ECMO and I checked the Merck manual and it says ECMO can allow many newborns to survive until they outgrow the pulmonary hypertension.

It also mentions making the blood slightly alkaline , which may also open the arteries in the newborn's lungs and reduce pulmonary hypertension. This is accomplished by giving sodium bicarbonate through an IV. This is usually for mild cases, but maybe combining the
oxygen and other meds with sodium bicarbonate would help.

Have the doctor's considered these?

Anonymous said...

There is always hope. No matter what happens. You both are strong and I know that Kayleigh has brought so many people together. People all over are praying for your family. And God's hands are in this. There is always a reason for everything. I can't hold back my tears because this girl has touched my life in so many ways. I am a first time mother to a daughter born in August(Im GiGis mom) Ever since she was born, my heart is so touched by every child I meet or see who is hurting or have been hurt. I think how much I would not want my baby to even have a hair pulled from her head much less have to fight for her life. To watch your girl grow has been amazing. She is so beautiful and I see Amy in her face. Adam I think it is awesome this blog that you have set up. It is cool that a daddy is writing about his girl. I was so excited the other day when I saw how big her cheeks were and to hear she was over five pounds. I know the future is uncertain, but the journey so far though as bittersweet as it has been is such a gift from God. This baby knows that she is loved, and she knows who her parents are!!! No matter what happens, she will always know how much you guys love her!!! So I get down on my knees and pray for God to give you all continued courage and I pray for "our"sweet Kayleigh who we have never met but have grown to love!!
Sarah Andrews(and GiGi)

Anonymous said...

I am praying for your family. When I logged on as I have done everyday for months. I was not expecting to see this. She is a fighter. I am praying she will once again beat the odds and your little one will be home with you where she belongs.

Nikrhithokay said...

I just discover that another forum on the aussie BC are following Kayleighs story after seeing the button on my posts..... http://boards.babycenter.com.au/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=bcAUbclub200809&tid=934

Carly Marie said...

Praying for the miracle you need. Also praying for God to wrap his blanket of peace around you entire family.

Much Love,

Carly x

Anonymous said...

Nikrhithokay made me aware of your family and poor little Kayleighs fight. (through BabyCentreSep08 Australia)
Prayers are with you extra hard.
I just read through all of your posts and I think she likes to give you guys a scare before coming good, so am praying super hard she does!

Kellie said...

I don't think I can find the words I need now and I'm sorry for that. I feel like I know kayleigh as her blog is the first place I come each day to check on her. I had given up on god years ago but today after reading this post I found myself on my knees praying for you little girl.
I really don't know if it helped but It's the least I could do for the little girl who has found a place in a heart all the way in melbourne Australia.

kristyo15 said...

Adam and Aimee,

I wish I could find the words to comfort you during this scary time. The only thing that I can do is to tell you that Kayleigh has brought me so much closer to God, in that I pray more than I ever have in the past. I pray that He takes you guys by the hand and continues to guide you thru this journey. Please know that y'all are such an inspiration to so many. Whatever HIS plan, we are continuing to pray.

Anonymous said...

My thoughts and prayers are with you and with Kayleigh, your precious daughter. With Love and Hope for a brighter tomorrow for your baby girl

Barbara said...

Sending all my very very best wishes, hope and love to sweet Kayleigh.

Anonymous said...

I've followed your blog since we were all pregnant on babycenter. I've checked on Kayleigh everyday since. I've never posted but as I sit here in tears about her situation I don't even know what to say. I am thinking and praying about your family always and hope that once again little Kayleigh will turn the corner. I am an owner of Curves (gym for women) and I have so many women asking about her everyday. She had truely touched many lives. And as a previous poster said "I haven't met her but have grown to love her". Thanks for sharing your sweet daughter with us. God Bless.
Michelle, Hebron KY

Anonymous said...

I've followed your blog since we were all pregnant on babycenter. I've checked on Kayleigh everyday since. I've never posted but as I sit here in tears about her situation I don't even know what to say. I am thinking and praying about your family always and hope that once again little Kayleigh will turn the corner. I am an owner of Curves (gym for women) and I have so many women asking about her everyday. She had truely touched many lives. And as a previous poster said "I haven't met her but have grown to love her". Thanks for sharing your sweet daughter with us. God Bless.
Michelle, Hebron KY

Anonymous said...

Lord Jesus we ask you to watch over this baby girl, Please let her stay in this world,
Put your hands upon her head,
and anoint her the best you can,
give her a miracle cure,
and let her be with her family forever more,
we all come to you at this time,
to ask you to be by kayleigh's side,
take her down the miracle road,
and most of all cure her so she can go home.


Anonymous said...

Prayer and love coming from Southern NH. God Bless you all in this very difficult time....

Anonymous said...

Sending many prayers for Kayleigh today and hoping that this miracle drug works wonders for her. We will continue to keep you all in our prayers each and every day.


Anonymous said...

I am praying for Kayleigh and all of us who feel so close to her because of this blog and getting to "know" her through Adam's writing.... May you have comfort through prayers of hundreds or thousands of people who truly truly care about all of you!!

The Lord is near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus."
Philippians 4:5-7

Anonymous said...

Adam and Aimee,

Please know that your precious baby girl continues to be in my prayers... now more than ever. I have written a "K" on my hand, and every time I look at it I will remember to prayer for her (which will be like a thousand times today). I pray that you two will feel God's loving arms wrapped around you tightly. I pray that He will heal Kayleigh's heart, and that He will help to make it work properly. Just keep remembering that she is in His hands, and there is no better place for her to be in right now!

Much Love

Anonymous said...

What do you do...you hold that baby girl and you tell her a million times how much you love her and how much she means to you both, you kiss her & try to comfort her the best you can. Just shower her in your love and pray for a miracle. We are all praying for one!!!!!!!!!!!!!!!!!!!!

anonymous said...

I came across your blog a couple of weeks ago and have been amazed by your little girl. To think she's come this far is amazing. It breaks my heart to know that you are going through this knowing it's a very real possibility that your days with Kayleigh here on earth will be over soon. But how awesome is our God that he guarantees that you will see her again in a whole, healthy, happy body. I pray that this medication works and you are able to bring her home and spend many many years loving her here. I will also pray that if it's God's will to bring her home to him that your family will find peace in that.


Alaine Poelstra

Anonymous said...

My thoughts are with you and your beautiful daughter.

Anonymous said...

Is there a shot at a lung transplant?

Laura said...

There are extra prayers from Texas this morning for little Kayleigh. She has come so far and no matter what happens, she has been such a blessing to me. Her story is already a story of miracles, and we are praying that God will continue to bless you and Kayleigh with miracles.

Jennifer in NM said...

I am at a loss for words. I of course am praying for her to heal and for her to be home with you guys. I try and tell myself that God puts babies here and takes them because only babies can serve an extra special purpose when it is time, but I am not satisified with that right now. I want and pray ever so hard for Kayleigh to be ok. She has become a part of my life. She is the first thing I check on in the mornings whether I am at work or at home. I wear her bracelet all the time and it serves as a gentle remider of a miracle and that I need hope and faith in my life. When my life seems to be getting hard I sit and think of you guys and the stress that you guys have, and all of a sudden my life pales in comparison.

Adam, it never was a thought that crossed my mind about Kayleigh having a possibility of "passing on" until you said tonight "What do you do when your daughter is dying and there is nothing you can do to help her?" That just hit me hard.

I will pray ever so hard for that baby girl.


Anonymous said...

sorry to hear about Kayleigh. My heart ache for your family. There will be extra prayers from New Jersey.

Anonymous said...

Adam and Aimee, I am at a loss for words. But I know there are no words that can lessen the fear or ease the pain right now. We are praying for your beautiful daughter and are carrying her in our thoughts all the time now. God bless the two of you and your family. Love The Nadeaus

Dana Duggins said...

I am praying for a miracle for your sweet baby girl and your family. I am praying for God's will to be done and for there to be peace in your family. God loves you all more than you can even imagine and He makes no mistakes. I pray for Kayleigh to be comfortable and peaceful as God's will is done either to heal her or take her to be with Him. NO matter what, you love and believe in God, so you will live with her for eternity even if not in this life on earth. My family is praying!

Anonymous said...

Don't want to give false hope, but is there any chance that any of your doctors knows about these studies?


Anonymous said...

I have been praying for Kayleigh from Kansas City. May God work a miracle over your little girl and help her get better. She truly is a miracle no matter what, she has changed so many peoples' lives for the better through her story. May God bless all of you!

Terresha in KC

Anonymous said...

I have been praying for Kayleigh from Kansas City. May God work a miracle over your little girl and help her get better. She truly is a miracle no matter what, she has changed so many peoples' lives for the better through her story. May God bless all of you!

Terresha in KC

Anonymous said...

I'm so sorry to hear this. Our little Gabrielle passed away on Thanksgiving, so I know how hard this is. I pray that the medicine works and Kayleigh gets better ASAP. My heart goes out to you and your entire family.

Mel said...

I am so sorry to hear of this turn. Your family and this precious baby girl are fighting so hard every day, my heart breaks for you.
Dear Lord,
Please be with this family and most especially this sweet baby girl Kayleigh. Please Lord bestow upon all of them your strength, your peace. Please be with these doctors and nurses and give them wisdom in using their skills. Please Lord let this family and this sweet girl know that they are not alone in walking this journey, they always have You. They have touched so many and let them know that we continue to pray for them daily. In Jesus's name, Amen.
Still praying in OK.

mamaduck said...

Stay strong and brave for Kayleigh. Our prayers are with you, for Kayleigh's comfort and strength to do whatever it is God needs her to do.

Anonymous said...

Praying very hard for you, your family and sweet baby Kayleigh.

Ree said...

My thoughts & prayers are with you guys!! I have even posted your link on my blog:
to help spread the need for prayers!!
I will add it to my sidebar, as well!!
I also will link it to my Facebook page, too!!
Stay strong for that baby girl!! We have to put our FAITH in HIS hands!! GOD BLESS!!

Anonymous said...

Praying for you today and believing with you for a miracle.

Melissa said...

I am still praying for Kayleigh and your entire family! Just remember, God works with and without "miracle drugs"!!! We have gathered together (and there are WAY more than two of us), so God is here! He is awesome--and able to do even more than any doctor or medicine! We've asked him so many times--I will be on my knees THANKING him for all He has done so far, and all He will do in Kayleigh. Many prayers...

Valerie said...

Your little Kayleigh is in my thoughts and prayers.

The Woollard Family said...

We are praying extra hard today, if that's even possible! But we are definitely going to try. I am so sorry to hear all of this but of course we are hoping that this new medicine kicks in much faster than a month and works, REALLY works! My prayers are with you and your family. Sorry this had to happen, and on your birthday of all days...

The Woollard Family

Tracie said...

I'm so sadden to read this. I can't even imagine how you must feel. You guys are in my prayers. My church is holding our Christmas banquet tomorrow night and I've requested that a special prayer be said for Kayleigh.

I'm reaching out to all the people I know near and far to pray for Kayleigh.

Happy Belated Birthday Adam!

God Bless!

Anonymous said...

Dear Lord
We come to you in Thanks for the Freeman family and for their daughter Kayleigh. We thank you for the blessings that they have brought to people throughout the World by telling their story and by showing their Faith in You.

We ask you Lord to please bless this family with Health for Kayleigh and Serenity for Adam and Aimee. We ask for Strength to perservere through these continued trials. We ask that You provide their every need, as You know their needs before anyone else does. May Your Will be done.

We ask all these things in Jesus Name. Amen.

GiGi said...

Please God we need another miracle that only you can provide. We are not ready for Kayleigh to go home to you!
We pray that your will be done and know you know best. Hold the Freeman family close.
Please heal Kayleigh to grow and do your will. Amen

Anonymous said...

Praying for all the Freemans today, stay strong for one another, God is in control. You have done all that you can, let God continue to bless and perform his miracles with this special family.

LMP said...

I am praying (and crying after reading this post). I will keep praying for beautiful little Kayleigh and your entire family.

Kala Family said...

Praying....always praying for sweet Kayleigh.

Anonymous said...

I have been following your story almost everyday since it began. I will send prayers your way.
God bless Kayleigh, and your sweet family.

Katie Anderson said...

Adam & Aimee,

I cry as I read and yet I know that Our Savior is our comforter and to Him must we turn in times like these. He alone decides who lives and who passes. We can be comforted in those thoughts, however as my heart is breaking I know that yours is in much worse condition. George asked me about Kayleigh this morning as he does every morning and I told him that Jesus loves us so much that many years ago He came to this world to die for our sins, and to pay the penalty on our behalf and that He does not wish for even 1 person to suffer. He is the Alpha and Omega the beginning and the end. He alone will decide what is going to happen, and for me that helps because I know He alone is just and He has a plan. Please know that we are all praying for the two of you and of course Kayleigh. I pray that the Great Comforter will help you find peace in whatever may happen, however as you we are PRAYING FOR A MIRACLE.

In HIS Grip,

Katie Anderson

Mrs Redboots (Annabel Smyth) said...

This is so very hard for you, I know. I pray you can hold Kayleigh in Jesus' light, so no matter what God's will for her is, you can accept it. God loves Kayleigh far more than even you two do, and I know that, if He has to take her Home, His heart will break, too..... but we are all praying that won't happen.

Anonymous said...

I'm praying for a miracle...Rest assured that no matter the outcome, Kayleigh will impact many lives. As the busy mom of a 7-month old baby girl, I often found myself too exhausted to spend time with God. That all changed when I found your story. I've been praying like crazy for Kayleigh, and she is my daily reminder to thank Him for my healthy daughter and not take a moment for granted. God bless.

Amanda said...

Praying for your sweet girl and you too!

Sarah Suzy said...

Lord please hold the Freemans in your arms. Wrap your arms around little Kayleigh and heal her. Comfort Aimee, Adam, Brandon and Allison, let them feel the peace that only comes from you. Lord, let the doctors and nurses have strong hands, wise minds and loving hearts to help guide the Freemans through this difficult time. And most of all Lord..we need another miracle. Heal Kayleigh. Heal her heart and her lungs. Heal her. Let her come home to her parents and siblings. Let her grow to run and laugh and pray. Lord we know through you anything is possible...and we also know that you hold all of us in your Master plan we pray for your will to be done in all of this.

Sweet Kayleigh, you have touched my life and my heart. I love harder and pray more because of you and your amazing story. Thank you so much Adam and Aimme for letting all of us share your little girl and for giving us the opportunity to not only believe in miracles but to witness them.

Sarah, Chris, Helaina and Ava

Anonymous said...

My prayers are with you. I thinking of your sweet girl often.

Anonymous said...

Have the doctors ever mentioned trying a trach and G-tube with Kayleigh? She could at least go home this way. Many, many babies who have pulmonary hypertension require exactly this to survive long enough to outgrow their chronic lung disease. Just curious.

Unknown said...

The power of prayer is miraculous and wow how Kayleigh's story has changed so many lives. I would say I was not as devoted a Christian as I should have been over the past several years but Kayleigh has reminded me and continues to remind me how precious life is and that no matter how long we are on this Earth the impact you have on others is far more powerful than anything else you can acheive. I was sitting here today praying for Kayleigh and others in the world that need prayer when a friend of mine emailed this to me. I felt it was exactly what I needed to hear at that particular moment and it brought a sense of Peace to know that God is great and that Kayleigh is part of His devine plan to reach out to others across the nation that need hope. I am praying for her MIRACLE because she has truly been my miracle and such an inspiration to me. Thank you for sharing her story and allowing us to experience a part of your life that has been so amazing.

This what I received from my friend:

"The will of God will never take you where the Grace of God will not protect you." ~ Ephesians 3:20

Saint Theresa's Prayer

May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith.
May you use those gifts that you have received, and pass on the love that has been given to you.
May you be content knowing you are a child of God.
Let this presence settle into your bones, and allow your soul the freedom to sing,
Dance, praise and love.
It is there for each and every one of us.

Anonymous said...

Kayleigh is in my prayers. Kayleigh continues to be a miracle and a reminder that life is precious.

Erin said...

My heart goes out to your little angel. I have prayed for her extra hard, she has came so far. After reading your blog yesterday, I had to do some research..I've been thinking there has got to be something we can do, she has been doing so well. I ran across this little article stating those with fixed pressures have some alternatives, I don't know what these are alternatives are, or what they involve, but maybe your cardiologist could help you out. If you want to read it, very short, I hope it can add some insight. May God watch over Kayleigh and your family. She's my cyber baby :) xoxo to her :)
Love and Light
The Polley's

Here is the link:

Robyn said...

I am in complete shock and holding back tears as I read this. I am keeping all of you in my prayers and saying extra ones throughout the day.

Pennie said...

As many before me have said, we know to whom to turn during this difficult time for Kayleigh. The Creator of the universe and the one who formed your precious Kayleigh, God Almighty. In Psalms the word says that the Lord forgives all our iniquities and heals all our diseases. We must believe that He knows what your daughter needs and He will deliver. Claim it, believe it, and trust in the Master Healer and the Great Physician to heal her. God's plan is without error, so stand firmly on the knowledge that He cannot sin or make mistakes. Follow Him as He leds you through the valley. He will never leave you or forsake you. If you can't walk let Him carry you. Know there is healing in the mere mention of His name. He tells us in the scripture that if we ask anything in His name, believing, we shall receive.

Trusting God, believing in the miracle making power of His love, and praying in agreement with you for Kayleigh's healing. We are thankful in this and all things.


mum2twelve said...

I am bringing a copy of your most recent post to an Advent Mission tonight. The priest leading it is know to have brought about many miraculous healings through his prayers to Jesus. I will ask him to pray over Kayleigh either through her picture, or your post.

I have posted her needs on our parish prayer line. Many preemies have been prayed for through this group - with miraculous results.

My heart is with you in the pain you are suffering. May Christ help you bear this most difficult cross of suffering that you are experiencing.

Christi aka mum2twelve

Laura said...

My thoughts and prayers are with your little miracle, beautiful daughter. I hope you have a Christmas miracle.

aimee gillespie said...

I am so sorry to read about this. My family will be praying extra hard for Kayleigh.

Aimee Gillespie

Anonymous said...

Extra prayers coming your way. I'm sorry that you guys are going through this. Kayleigh is a fighter, she always has been. Since day one. She will pull through this.


Mommy P said...

There are more prayers headed your way.
May you all have the strength to get through this - what ever the outcome (and I'm praying that Kayleigh gets that month she needs to make that last tool work!)
She's an amazing fighter!

Unknown said...

my family's prayers are with her and you all today extra hard! My your little fighter keep fighting the fight for a very long time! God Bless

the herzog's

Anonymous said...

Dear Freeman Family

My family and myself will continue to pray for Kayleigh and all of you. God Bless!

Anonymous said...

I wanted you guys to know that your story has touched me very deeply. I feel I have become closer to God and find myself praying more than I have in a long time. I will continue to pray for Kayleigh and for you to have the strength to get through whatever God has planned. I read your blog every morning and send positive thoughts your way. Just by reading all of the comments, you can see how many lives you have already touched like you have mine.
God Bless,
A mom in NJ

Trish said...

We share a birthday. I am sorry that you both had to hear this kind of news. This is the hardest to swallow I am sure. I Will be praying for both you and Aimee and also little Kayleigh.

Jill said...

Your family is in my prayers.

Jill Stewart
Columbia, SC

Anonymous said...

I saw Aimee's post on facebook and could not believe it. I then came here to read the blog. I am so incredibly sorry. I cried and prayed VERY hard last night. A while back, after Kayleigh's surgery, I posted an email to all of my friends and family asking for prayers. They were all surprised since I don't usually pray. Kayleigh has strengthened my faith and has touched me very deeply. She has really touched my heart! I am so hoping Kayleigh proves the doctors wrong again!

I wish I could hug you both in person. (((HUGS)))

Denise in CA

Anonymous said...

Oh Heavenly Father please please place your healing hands upon this beautiful baby girl. Father I pray that you help her lungs breathe the air that she needs to heal and beat this. Father I beg of you to help her family stay strong for her. In Jesus's beautiful name I pray, Amen.

Lori Tucker
(mama to a 25wker)

mummy to angel SKYLA said...

Keep Fighting beautiful Kayleigh. We are praying for you and your family sweetheart. All the way from Sydney, Australia. I know how you feel mum and dad. My daughter fought for her life for 8mths. Everyday she would have so many pulmonary hypotension episodes. It was so hard to watch. My heart aches for you right now. Its not over yet. Look how far Kayleigh has come. She is a true warrior princess. Keep fighting sweetheart. Hugs to you all.

Kristy, mum to Angel SKYLA 13/10/07-13/6/08


Anonymous said...

This is definately not the post I was hoping to read today. Adam & Aimee I pray that God gives you strength through this. He has proven to work miracles for Kayleigh already, and I pray that He has at least one more up his sleeve.

With love and prayers,

Anonymous said...

My thoughts and prayers are with you all!

annaandallysmom said...

We love you Kaleigh! Keep fighting baby girl......

krueth said...

Praying for Kayleigh and the rest of you.

A womb for rent said...

I am so sorry! I will be praying!!

Anonymous said...

I don't usually pray & it's not that I don't believe, I just don't make time for it. I know I should do it more often so I'm starting today. My first of many will be for your daughter Kayleigh. I pray that she pulls through this & you enjoy her for years to come. I will forward your story to as many people as I can to get them to pray for her as well. ♥

Amanda-The Family News! said...

Oh my heart just breaks reading this and tears flow. Kayleigh is such a beautiful baby girl. I just really can't find the words to say - but please do know that no matter what happens our prayers are with you and yes Kayleighs story has touched me very very deeply....

Anonymous said...

Oh my heart is just hurting for you guys! I pray and pray that she is a fighter and gets through this!!
You and your family is in our thoughts and prayers!

Anonymous said...

God has a plan for every person big or small. Nothing is an accident. It's not our purpose to question God's plan, but to find peace in knowing we are living his plan. Sometimes time on Earth seems short, but Heaven is our destination, our home.

God loves you and God loves Kayleigh.

Chantelle said...

Sending prayers for your precious baby girl and your family.

Lorena de Bianchi said...

God's plan is perfect even though we sometimes don't understand. Kayleigh is a true angel and has touched so many lives already.. Just think of the battles she has conquered in her 5 1/2 months of life... Kayleigh is Grand! Whatever happens just know that everything has a divine purpose. You two are definitely very special people to have been chosen by God to bring little Kayleigh into this world!! You guys are blessed!

My prayers are with your entire family!

Lorena de Bianchi

Ellen said...

Hang in there Kayleigh, you are a strong little girl. My thoughts are with you and your amazing family.

Anonymous said...

Our prayers are with you baby girl...here is a poem for you both Adam and Aimee
Twas the night before Christmas, and in each isolette
Little creatures were squirming and getting all set;
Machinery sat by their bedsides with care,
In hopes that good breathing skills soon would be there.

Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...

When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.

Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.

More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"

Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.

As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;
A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.

He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side,
And running down his face was a tear he had cried.

And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."

Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"

Love Baby Alex and his mommy

Anonymous said...

I have been reading your blog for months but never commented until now. Your story has touched me deeply. I pray Kayleigh amazes us all once again with her fighting spirit. If God feels it's time for her to be with him, know that Kayleigh has touched more lives in these few short months than most people do in a lifetime. God bless all of your family and know that so much love, so many prayers, and comforting hugs from all over the world are with you.

Anonymous said...

Thinking and PRAYING for you!!

Anonymous said...

Hi Adam (and Aimee also),

I will pray for your little one, Kayleigh. I did not see this one coming, because in your last posts you said she was doing well and better.

I am sure she will be okay. My son has pulmonary hypertension (PHHN, is it called?) also (after Kayleigh had it first). He was born 5 days after Kayleigh was born - at 25 weeks gestation.

Today, he just got his surgery for the g-tube and the nissen. So, maybe when she is feeling better, do you think she needs help in her feeding? Could it be possible that she was aspirating the milk into her lungs that causes her lung pressures and breathing to get worse? I never thought this happened to my son, but the doctors/nurse keep on thinking that and they had my son do the g-tube and nissen surgery without checking him first for a swallow study or upper GI study.

Does she need to go back on the TPN to help her breathing better? Is the feeds making her breathe worse?

anyway, feel free to email me if you want.
my email is: congau@yahoo.com

Hope you have a happy B-day, even if you are having a bad day today. Things will get better.

--Tam from DC

Anonymous said...

P.S. - Is this new medicine that Kayleigh is on called "acedaphide" or "adekaphide"? (sp?)
My nurse told me my son was just put on that medicine before for his PHHN when he had his feeds, and they had to take him off it since he is on TPN.

Anonymous said...

Adam and Aimee,
I have followed your story religiously since babycenter as I was due around the same time as Aimee, but I have never commented until now. Your story is so remarkable and I refuse to believe that it's going to have an unhappy ending. I don't pray but I do believe in miracles. In my heart of hearts I believe that Kayleigh herself is a miracle in human form and her presence on this earth is so amazing. I will keep believing in her, and in your love for her, and hoping that all of the prayers and love help her through this so that she will one day go home to her beautiful nursery and her even more beautiful family. Your strength is inspirational, but we all need support sometimes, so I'm glad you both have a world of support around you. (((Hugs)))

caitsmom said...

Thinking of you and your family at this difficult time. I'm sorry my words are so inadequate. Sending love and prayers for your precious daughter, Kayleigh.

Anonymous said...

Many many prayers for Miss Kayleigh and much love! Your family is in my prayers!

onlyhuman13 said...

So many prayers being sent up for baby Kayleigh and for your family. And many cyberhugs being sent your way. God bless.

Anonymous said...


Did the doctor try giving Kayleigh decadron yet? At my NICU, they give a large dose of decadron to a baby when they are not doing well. And they told me they always improve by it.

Oh, I told you wrong about the Adakazide. My nurse told me it is for diuretics and the other day my doctor said it was for the pulmonary hypertension. So I guess it must be for the diuretics.

Kristin said...

I am so sorry to hear the latest news. Your little girl is so strong, and has pulled through fighting the odds many times before, and I'm sure she'll do it again. I sent out an email asking for prayer from my family and friends, and I am also praying for all of you.

Anonymous said...

Been thinking and praying for Kayleigh, and the family all day. My heart is aching for your pain and stress...I am certain that Kayleigh has already proven to us what a miracle she is...she has made many people re-connect with God, she has helped explain faith and hope to my children, as well as introduce them to the power of prayer and the goodwill of men, strangers who feel connected to this baby... so many HUGE things accomplished for such a beautiful little girl...through your heartfelt writing we continue to "share" your experience on some level...I will pray for strength for all of you, and time and growth for little Kayleigh. Leslie in CT

liz.mccarthy said...

Sending you lots of love and light from a micromom in California....
(as well as the micro mom support group founder:) www.micropreemies.com

Come on little Kayleigh....fight little one!

Liz M

Anonymous said...

I'm sending prayer requests to everyone in my email address book and to my myspace friends. I'm so heartbroke and don't know what to say other than just know we and thousands of people are praying so hard!


PinterMel said...

I've been following your blog (vis a vis Story's Journey) since Kayleigh had her big heart surgery a little while ago. When I read your latest entry this morning my heart absolutely sank. Please know that you are all in my (and obviously many, many others) thoughts and prayers during this extremely difficult time.
Stay strong. *virtual hugs*

Anonymous said...

Adam and Aimee,
There are really no words I can offer you. I can't imagine what you are all going thru. I have read your blog every night for awhile now so Kayleigh certainly has people all over the country praying for her. You have touch many more lives that you will ever know. Lets not give up hope for our girl yet, she has surprised you many times before.

Anonymous said...

Sending love, hugs, and prayers.

Carol H.
Irmo, SC

Anonymous said...

Whether or not God decides it is the time for Kayleigh to come home, I have found hope in her story. She is amazing.

Always praying,
Kristin0821 from BBC

Heidi Ann said...

How heart broken you must be! She is an angel. How amazing you must be to have been sent such a princess. She is precious and in our prayers!

Valerie said...

I stumbled upon your blog, and I don't remember how, as its been awhile.

I have been hooked on your story and follow your blog by checking every morning.

Please know that there are so many like me; never having met you IRL, but loving your daughter all the same.

We want the best for all of you through this difficult time.

We pray for strength and peace, whatever is to come.

Su said...

My mother always say to me that God only gives us what we can cope with, nothing more...

My prayers are with you!

Susana from Portugal

Jen said...

Praying tonight!

Anonymous said...

I am from the June 2007 board on Babycenter and saw your story on the ultrasound thread.

I never have posted a comment before, but I have been checking your blog everyday.

God does have a plan for Kayleigh and only he knows that plan. I pray that his plan is for Kayleigh to continue to fight this battle of ups and downs and that we see more ups than downs.

Anonymous said...

I feel for you all so much. I am hoping and praying for your precious Kayleigh Anne to recover. But know that GOD works in mysterious ways. Kayleigh was sent her for a reason and if that reason is to just find out that Amiee has Graves Disease... she did her job. I know she loves you two and whatever happens she will be better in the end. I know how you feel and I was there about 9 weeks ago with my little Kendall Hope. She was a fighter who could not hold on. I was blessed to have 12 1/2 weeks with her and she was truely sent to save my life.
I am praying for Kayleigh to get through this! With Love

Anonymous said...

I found your blog and Kayleigh's story today from a link on Babycenter and I have spent my whole day learning about this amazing little girl you guys have. I am praying for all of you.

An internet Kayleigh fan from Connecticut.

Anonymous said...

I am praying for Kayleigh tonight and for the Lord to provide the both of you with strength to get through this difficult time and be there for Kayleigh.


Boston, MA

Adam and Sherry said...

My heart is with you guys. I hope all goes well. Kayleigh is a fighter and the lord knows what is best we just have to trust in him and everything will work out as it should be. I am so glad your faith is so strong. I know that is how we survived everything we have gone through. Stay close together and everything will work out. My thoughts and prayers are with your family.

Anonymous said...

I have read often since your first post in preemie parents group but have never comments...I have been praying for you guys! I will continue to pray for you guys. God grant you the peace and strength needed right now.


Anonymous said...

Adam and Aimee,
I am so sorry about your news, i am praying so hard that she will be ok!! I know kayleigh is a strong little girl and if she can pull through everything she has gone through i know she has the strength to pull through this!!! I will also start a prayer line for your family and for kayleigh, i am so sorry and will be thinking of you and the family!!!! Tiffany

Anonymous said...

I tried to fight the tears, but they just overflowed. My continued prayer is she comes home to her parents right now, b/c my life has already been touched with her here on earth. I pray that we will all be able to see that God's final miracle, in addition to all that He has done so far, is to heal this baby once and for all.

bri said...

Adam and Aimee... I am sad to hear of all the turmoil that you all are facing right now. I am going to make it a point to pray and fast tomorrow for your little one and your current situation. I am believing God for this miracle and for your daughter to BEAT ALL ODDS and come out of this completely baffling the Dr's and staff and all readers... believers and non. YET WE PRESS ON! WE will press in on your behalf! You have beckoned the help of your brothers and sisters in Christ and we will not let you down. We are going to be the body that pulls together in your time of need. I am speaking on behalf of all the people that read your blog and agree and commit to prayer for you all. I pray that you all feel the presence of God tonight and that He makes HIS GLORY KNOWN around you!

Sam said...

I haven't posted in a while, but I've been reading along every single day. I haven't been able to stop thinking about you guys today. I'm praying for you guys!

comfy cozy said...

Praying for you all, now more than ever! Hoping you all may find some comfort during this time and praying that God has His hands on Kayleigh. She is such a special little girl!

Anonymous said...

I stumbled onto your blog... By mistake. And was completely glued. I read the whole thing. and i'm sobbing. Kayleigh is beautiful, and gives the world such hope and light. I pray for you and your wife and your beautiful little girl.

I have one in heaven, and I'll make sure he tells God to help Hayleigh, in case god gets sidetracked.

She's truly a miracle, and i hope i can keep reading about her, and watching her grow.

jlwgator said...

I just posted earlier tonight that today was the first time I'd learned of Kayleigh's fight for life. I am speechless that after so much progress, she is still struggling. I am in tears as I write this and I am going to probably have trouble sleeping tonight thinking of you. I hope your little girl gives you the best birthday present and early Christmas present of all. My prayers are with you. I don't know what else I can say...Best Wishes to you & Aimee and baby Kayleigh.

Amy said...

~Adam and Amy~

I am at a loss for words tonight as I read your update. Kayleigh has been through so much and has overcome every obstacle so far. I am praying that she overcomes this one as well. She is so strong and has a will to live. I have asked God to wrap to his hands around Kayleigh and heal her in the way he knows best, whether it be here with her family or in heaven at His side. Whatever He dicides will be used to glorify His name. It is my hope that Kayleigh is healed here on earth. I also pray that GOd wrap His arms around you and remind you that HE is there for YOU during this difficult time as well. Just know that your family is being lifted up to God ten fold right now.

In Christ's Love,

Amy S in KS

Anonymous said...

Adam, Aimee,
if she does pass, I will tell my baby brother that is also in heaven to watch over her. He can hang out with her until you guys get there with her. They can have all the milk and toys they want. It is beautiful I am sure of it. Remember, you are not saying goodbye to her forever (if she does pass away) but only until until you meet again. Next time you see your sweet Kayleigh (if she passes) you can smile and be truly happy in heaven together with the LORD :) Isn't that beautifuL? And no more suffering for her either! I am just trying to give you guys a happier version of whats going on :) Much love!

Anonymous said...

I know I have posted twice already but I am just SOOOO sad :(.

Mommy said...

Hi Adam and Aimee, I have spent the last 6-7 hours reading your blog since stumbling across it earlier on BBC. My heart goes out to you as a fellow heart baby parent. My DD has an ASD & a VSD but she was not preterm so we do not have the same kind of issues that you do. I can relate though! You are in my thoughts and prayers and I have signed up to your blog to get updates!
Cheers, Aimee

Kate's Mommy said...

praying for you and your family...praying you feel God's hands wrapped around you.

Anonymous said...

I am honored and blessed to know little Kayleigh and I am praying for all of you.

Manda Castilla said...

Adam & Amiee,
My thoughts and prayers go out to you and your family. My son Gabriel was born at just 26 weeks gestation...and after reading your blog is so took me back to those roller coaster days in the NICU. The night of his birth he had a lung bleed from too much pressure from the vent. Which resulted into a brain bleed...that could not be stopped. We were told he would not survive through threw night. I prayed so hard that night and got on my knees to ask GOD for healing and a miracle, we had many prayers going for him. Gabriel will be 3 yrs old on the 26th. With me saying Jesus take the wheel...he took all control and gave us our son...with a few more roller coasters. So my point is to not stop praying and I have read you have not. I will pray very hard tonight for you beautiful daughter...as if I was praying for my own child. I hope GOD hears our prayers...I will continue to keep reading your blog for updates and pass the word on for more prayers. Try and stay strong I know how hard it can be...if you need anything at all...more prayers...words of encouragement please contact em anytime @ mandacastilla@gmail.com...All our love,

Amanda, Kelly and Gabriel Castilla

Anonymous said...

I just found your story tonight on cafemom.com I started at the beginning and red until late oct and skimmed (its 2 am here) until Dec when I saw your last post. I pray for Kayleigh and truely feel in my heart that she will make it through this. She has been such a fighter for this long I am sure she will keep it up! Thank you so much for sharing your story, i will have to keep up on it to she how that little angel is doing. She is in my prayers. Oh and Amiee did an amazing job with pumping and feeding her breastmilk. What a great feat she should be extremley proud of herself, i know it was alot of tough and painful work!! Great job momma for doing the very best for your Kayleigh!

Anonymous said...

Lots and lots of prayers headed your way. I'll call and put Kayleigh on our prayer list at church in the morning.

Kayleigh has been a miracle right from the start, I bet you she has more up her sleeve. :-) Don't lose hope.

♥.Trish.♥ Drumboys said...

Dear Lord, Please give Aimee & Adam and Kayleigh “peace” at this time. Cover Kayleigh in your hedge of protection and love.

Fill Kayleigh with your strength so that she may get through each day without any pain. Fill Aimee & Adam with your strength so they can be there for each other and Kayleigh, knowing You are there with her every step of the way. There with Adam & Aimee too.

I pray for their comfort in knowing You are in control. Amen.