10/25/08 - Hanging In There





First of all, I want to thank every single one of you for the kind words and prayers. I have my phone with me at all times and I can check my email from it and every time we got an email, it brightens up our spirits. You all have helped us stay strong through this rough patch. Out of everything we have been through so far, this is by far the hardest part of the journey. The reason is because of this up and coming surgery. It is so hard to see Kayleigh being faced with so many challenges at once and have to be in the best shape to overcome them all for a chance at life. All Aimee and I can do is have faith that things will go perfectly for Kayleigh to come out of this unscaved. Tonight, Aimee told Kayleigh that we can't wait to tuck her in her own bed each night and kiss her little love scar.

It has certainly been a rough two days. Kayleigh is slowly making some progress from her nightmare of a day yesterday morning. She has been heavily sedated, but every time the medicine wears off, she starts to desat to the point where they have to "bag" her to bring her sats back up. To bag her means to manually pump air/oxygen in to her lungs to bring her sats up since she can't do it herself. They had to do that at least four times today, which is not so great.

Her blood pressure is also elevated and does not seem to show a lot of improvement over the whole day. They are administering medication for that and starting tonight at 8:00, they did a much larger dose to help bring the pressure down. We should and hope to see some results after a couple doses. They will be giving that to her every 6 hours. Besides that, her right leg where she had the catheter put in is a shade of purple. They call it "cath leg", and we were told it is normal. They are keeping an eye on it to make sure there is blood flow and her foot has a pulse. It was blotchy yesterday, but the whole leg is purple today. I hope to see improvement with that as well.

Tonight while we were visiting, Aimee held Kayleigh for several hours and to our amazement, Kayleigh was doing pretty good. At first, Kayleigh was out cold from being sedated, but she started to move around and peak an eye out to see what was going. We knew she was coming down off the medication, so we were very worried that she would start to drop her sats like she did all day yesterday and today. As more and more time that went by, she would move as Aimee spoke to her and her sats were looking better than normal. Kayleigh was really being comforted by Aimee's voice and it made our visit so wonderful. It gave us more hope that she is moving in the right direction. We just hope she keeps it up.

We spoke with the cardiologist and they are planning on doing the open heart surgery to close the VSD once Kayleigh recovers. They are scheduled for Monday, but if we need to push it back because she is not ready, then they will be flexible enough to do so. Although, they want to do this as soon as possible so their window of opportunity doesn't run out. The resistance in her lungs are already high, so it could be any day that the pressures can change from reactive to fixed. We just hope she can recover quick enough to get this major surgery complete before our time runs out. We are racing against the clock right now.

We are supposed to meet with the heart surgeon who is doing Kayleigh's surgery tomorrow to get more details and his perception on this whole situation. We are curious to hear what his take is on all this and what he thinks her percentages are. Our biggest fear right now is that Kayleigh is not strong enough to handle this kind of surgery. Being that she had such a horrible response to this minor procedure, I am afraid of how she will do with open heart surgery. I know she is a strong little girl, but the stats don't prove the odds to be our favor right now. The cardiologist said they want Kayleigh to be 100% cleared in every aspect before they do this surgery so we have the best possible chance of everything working out the right way. She will be considered in critical condition for the first week after the surgery and there is a large chance they will leave her chest open in case something goes wrong and they can get back in there. The hard part about all of this, is we have no chance or power to make any alternative decision that will help. Because of how severe Kayleigh's situation is, she will die without the surgery and there is a high chance she could die from the surgery.

After talking with some of the doctors and nurses, we heard that several of the doctors have consulted with colleagues from other major hospitals around the United States about Kayleigh. They wanted to make sure there decisions were the correct decisions and if the majority agrees with what they are planning to do, they have to go with that decision. My take on it, is that with Kayleigh being smaller than the expected size to close he VSD (She was suppose to be 2000 grams) and the unique situation with her counterpart (Pulmonary Hypertension), this is no ordinary walk in the park surgery. VSD's are closed every day all over the world, but with all the challenges that are involve with hypertension and elevated pressures/resistance, this makes for a nightmare of a challenge for a surgeon.

The doctor doing our surgery is a younger heart surgeon who comes from some of the elite surgeons out of Boston. Some of the best heart surgeons in the world have given high praises of this doctor, so we more than approve of him handling our little girl's heart. Please pray that God will guide this doctors hands to successfully fix our baby girl so she can come home to a family who will love and cherish every minute of every day with her.

Do you think this doctor realizes how special he is in that he will be the only man in Kayleigh's life who would ever truly and literally mend her broken heart? Without a doubt, I am seriously one jealous Daddy, but a completely thankful Daddy for this surgeon's knowledge and skills that God has blessed him with.

God Bless and God Please Help!

The Freemans :)

42 comments:

Amanda - Top or Bottom of the World said...

I am soooooo glad to see your update tonight! While it doesn't bring excellent news, it is news and I have been sitting on pins and needles worried about little Kayleigh all day!

I will keep her in my thoughts and hope for a speedy recovery!

Lindsey said...

I've been following your story about your precious Kayleigh. I will keep your family in my thoughts through this difficult time. I have a former 25 weeker and I know how hard this roller coaster is, but she will continue to amaze everyone by her strength.

Nikki Conway said...

I can't imagine how you guys are feeling, because I'm just sick with worry. I'm praying every second, and Kayleigh hasn't been off my mind in days. I found something that I would like to get her, but I wasn't sure where I could send gifts. If there is an address that I can send something please email me and let me know. I know you are busy with Kayleigh right now so just whenever you can. Yall keep talking and loving on her, I think that is the best medicine. I know Kayleigh enjoys giving us gray hairs, I found like ten new ones after yesterday. I have faith that she is gonna pull through this...she is such a blessing. With love, Nikki Conway.
NDM8881@yahoo.com

the passionate "peach" said...

My little boy was born weighing 1.4pounds and is now 3 yrs old. He had a lot of ups & downs in the NICU, but we kept SPEAKING God's Word over him all the time, and even put a repeat CD in his bed on very low, of scriptures that spoke of healing. I think it is in Proverbs that says "His Word is LIFE & HEALTH to all our flesh", and in Psalms it says "He is the STRENGTH of our heart". Nahum 1:9 says, "Affliction has left, and will not rise up again." There is also a scripture that says "He will satisfy you with long life and show you His salvation". Lord, we pray these promises over Kayleigh, for health and life to all her flesh. "You sent your Word and healed us".

Lord, we agree with this precious family for your healing and LIFE over their daughter.

Our love & prayers are with you.

Lisa in Chicago said...

I've been waiting and watching for your post all day. I just know that she will be alright.
Hang in there!
Your Realtor friend in Chicago, Il.
Lisa

Karen said...

I read your entire story about Kaleigh about 3 or 4 weeks ago - while my daughter lay in my living room pregnant with my grandson - hoping that she would stay pregnant long enough to avoid the NICU but wanting to learn all I could from other family's that have been through the experience just in case. After reading her entire blog in one night (I'm a night owl too for sure!) I've been reading updates every day. My daughter gave birth to my grandson on Tuesday Oct 21 - at 33 weeks 5 days, and he was 5 lbs 6 oz and 17 1/2 inches long, puts Kayleigh's size in perspective for me for sure! He is doing great, and will probably be released on Friday Oct. 31 - when he would have been 35 weeks gestation. So my daughter was discharged today and this is the first day that I've been able to read updates on your blog, and I was so sad to read all the recent problems, but Kayleigh is one tough little girl - and has so many who never knew her or your family praying for her - she is in good hands with the doctors you write about and she will remain in my prayers - you are very strong, both of you (her parents) and I admire that strength so much - you are fighting for your daughter's life and God is on your side.... best of luck and I will continue to pray and read updates!!! After being in the NICU with my grandson the last 4 days I see with my own eyes now the baby's Kayleigh's side and my heart just breaks for these little baby's - they are all special Angels and its wonderful that you share your daughters story so honestly with so many -you inspire!!!

Sarah J. said...

So glad to see an update from you tonight! Thank you for keeping us all posted on Kayleigh. I'm glad Kayleigh is doing better then she was yesterday. I'm so glad Aimee was able to hold her and that responded to her . To me that is a good sign. Hoping for a major turnaround in little Kayleigh in the next few days, so that she can have her heart surgery and go home with you and Aimee where she belongs.

I called my brother and he started a prayer chain for you guys in his church, and I posted a prayer request on my birth club on BBC, so there are lots of prayers headed your way.

The Lord will guide you and the doctors through all of this. He has had his hands on Kayleigh from the beginning.

God Bless all of you.
Love and Prayers from Ohio!

Sarah, Christopher, Helaina and Ava J.

campbell9023 said...

Adam and Aimee I am so glad to see the post. My friend and I called each other last night worried sick. We chalked up the later posting to you guys staying with Kayleigh which is what she needs. I told my friend that my heart is literally breaking for you guys, and I have had panic attacks and have cried on my to and from work. I am scared for you guys and am absolutley terrified for her.

Adam, you brought some huge tears to my eyes when you said that the doctor is the only one who will be able to mend her broken heart. You will have your chances, just not in the literal form of touching her heart, but you will be the one she comes running to when someone does her wrong.

I have been saying some extra prayers throughout my day. I would say there is not an hour, or sometimes minutes on my down time that goes by that I don't think about that precious angel and of course you guys. I will continue to pray for you guys.

Jenn
jlcampbell2008@yahoo.com

GiGi said...

[IMG]http://i177.photobucket.com/albums/w232/ritataylor/candle.gif[/IMG]
Praying!

Emily S, Clinton, TN said...

The surgeon may be mending her broken heart now - but there will be many more to come and mom and dad - you'll be the one who loves her through it. You write that Kayleigh does better while you're there, but I don't think you're giving yourselves enough credit. She already knows and loves you - it's amazing!

I read your story every day and think about your family. I have a son who is just older than Kayleigh and I hope someday really soon she'll be home so you can snuggle with her like I get to. You're sooo strong and will have such an amazing bond for all of this! Keep up the amazing job - all three of you are inspirations!

Anonymous said...

I will be thinking of you and your family all day! Recover soon, little Kayleigh!

Jennifer said...

Beautiful imagining a tiny baby girl lying on the chest of her mother.

Thanks for sharing.

(found you through a comment on CF Husband's blog)

Ali said...

Praying for that precious little miracle. God Bless.

kristen from GA said...

well as i sit here and read everyday for the past 2 months about Kayleigh i feel the emotional connection with you and your family. on good days i'm so happy and on bad days, i sit here and cry and pray for her to just get better and strong to come home with ya'll. I'm also a mom to a preemie that was born 9 weeks early in april and i can relate to some things but nothing compares to what ya'll are dealing with and i couldn't imagine. i said a prayer for kayleigh this morning and i know she is a fighter and WILL recover, no doubt! the next surgery tomorrow is another step closer for her come home to you, completely healthy. My thoughts and prayers will def. be with ya'll tomorrow!

SHARONKJS1@AOL.COM said...

MY HEART AND PRAYERS ARE WITH YOU.I WILL BE ASKING FOR PRAYER FROM MY CHURCH AS KAYLEIGH FACES YET ANOTHER FIGHT THROUGH THIS SURGERY. REMEMBER THAT HE DOES NOT PUT ANYTHING ON US THAT HE KNOWS WE CAN NOT HANDLE. GOD BLESS YOU IN THIS NEW BATTLE..SHARON JACKSON MUNCIE IN

Anonymous said...

I have been praying for Kayleigh and your family straight for days now as so many others have. I am heading to Church in a little bit and will pray even "harder" for her there.
May peace be with you....

Mat & Laurel Lunnen said...

So happy to see your update, I literally probably checked your blog 10 times yesterday. Kayleigh has been in our prayers non-stop for the last couple days; our family and extended family are all praying and rooting for her and your family. Please God give her strength!

Lots of love from Canada!

Anonymous said...

Thank you for taking the time to post an update - so many of us have eagerly awaited to hear news on Kayleigh. Many, many prayers are being lifted on her behalf and I continue to pray that God will embrace her little body and make it stronger for this upcoming surgery. I hope there is some comfort in knowing that others care and we are devoted prayer warriors for Kayleigh, you and Aimee! Hang in there.

God is our refuge and strength, a very present help in trouble." Psalm 46:1

Kathy, Orangeburg, SC

Paula L. said...

Aimee and Adam,
I'm so glad to hear that Kayleigh is stable, and so glad to hear that you were able to hold her. I know she knew who had her and that gave her great comfort. I work again Monday night, and I hope to hear good news from the surgery if it goes as planned. Please know that everyone in NPCN is thinking of you guys and know that Kayleigh is still in our prayers. I know she's a strong little girl! Hang in there!
Paula (Kayleigh's NPCN RN)

Erika said...

Iam so happy to hear that the little miss is doing OK and how sweet how she responds to you guys. I know in my heart that Kayleigh will pull through this surgery. I hope she has a wonderful day today so that she can get this surgery out of the way and move on. And lots of prayers for the cardiologist. I live in the Boston area and everyone around here is so thankful to have such amazing doctors available to us and some of the best in the US. Kayleigh will be in the very best of hands.

David said...

Aimee and Adam,m
We will continue to pray for Kayleigh recovery and for the doctors to have the forsight and skills needed to handle any hurdle that may pop up. Continue to Trust in the Lord he gave you all your doctors and nurses to help Kayleigh through all this. Reading your description of watching her sats and her being baged has brought back many vivid memories of the NICU. I will also pray for the "unknown".
God Bless
David
Seattle area

Krista said...

Your story was referenced on my BBC birthboard, Oct 2007, as a source of inspiration to someone going thru a similiar journey. What an amazing surprise when I found out you all were right here in Charlotte! I will keep your beautiful family in my prayers and look forward to watching Kayleigh grow healthy and strong! God bless you all!

Kelly said...

I've been away from my computer and thus Kayleigh all weekend! I'm overwhelmed right now. I'm glad that things are a little better. I just pray that everything goes well with the VSD closing.

Heavenly Father, please be with Adam and Aimee as they feel helpless to the things that are happening to their princess. Give them strength Lord, faith, hope and a big hug. Lord, please be with the doctors, the nurses and the support team as they make the best decisions possible for Kayleigh. Lord guide their hands, work through them. And finally Lord, be with Kayleigh. That she remains as strong as she has been. That she makes a complete recovery and shows how much strength she has. Hold her close to you. Be with her always Lord.

In Jesus' holy name.
Amen

Adam and Aimee, stay strong and know that SO MANY people are on your team...rooting for you.

Kayleigh's Kentucky prayer warrior....
Kelly

Pennie said...

As a mother, my heart breaks to see what you guys are going through with your baby. I know it must be such a helpless feeling to know that it's all out of your hands, except for praying.

Truly, all any of us have is prayer, but what a powerful resource, to be able to go straight to the Heavenly Father and open our hearts to Him. I pray that God will get the glory through all the battles that you are enduring with Kayleigh. She has no idea what is going on, but just the sound of her mommy's voice is God's way of bringing so much comfort to her.

Be humble and let the Spirit of God minister to you in this unique situation. Draw close to God and hear His voice. He will never leave you or forsake you. Only He can give your souls peace and your spirits rest.

Sweet Kayleigh, you have no idea of all the prayers people are praying on your behalf, but I know you are surrounded by angels and being held by God Himself. God is giving you lots of special attention. May He heal you and take you safely through the days ahead.

Love to all,
Pennie

Anonymous said...

Adam,
My family wore Kayleigh's bracelets all day yesterday. She is in our thoughts all day now. I can't possibly imagine what you and Aimee are going through but I know your little girl must feel how much you love her for her to have fought so hard for so long to be with you two. We are praying God can give her the strength to fight a little harder for a little longer. As always, we are praying for all of you. Carol Ann

Anonymous said...

Hey there. My name is Brittany. Im a 19 year old mom of a ten month old healthy little girl. Im not writing to you to say i have a website you can link, cause I dont. I had a normal healthy pregnancy, birth, and child. But I am writing to you to ask you about the bracelets. Your story has touched me SO much. Im sitting on my couch with my daughter blubbering like a baby!! You are so blessed, and Kayleigh is too to have parents like you guys, you are so loving and its noticable in every word you put though into and type into that computer. You daughter is beautiful. Absolutley gorgeous. Man, she is a fighter! I recently spoke with somene who lost their baby at 3 weeks, she was a twin. She doesnt know why god would take her child, and I said to her that there was another baby who needed to live, and she died in order for the other child to live a happy healthy life. Im going to be forewarding your story to her. I mean, who knows? Ya know!?
But I wanted to know if there is ANYTHING you guys need for her? I have alot of baby things, and would LOVE to donate em to ya. THere all clean too. No pets or smoke.
And I wanted to know the price of the bracelets? I just started attending high school again (lol i know im 19 and was supposed to graduate 2 years ago, and im still a sophomore....better late then never though right?) and im going to say something to the principal about maybe doing some type of donation program or fundraiser. Im in NH, Manchester NH. I think it would be a great idea! I dont know if you guys need help payingf medical bills, or what. But I imagine this is not cheap! And I want to help your wonderful family in any way possible, so PLEASE, let me know EVERYTHING I can do to help!

I hope to hear back from you soon. God bless you all, your all in my prayers. =)

Sincerely,

Brittany

Anonymous said...

I have been keeping track of kayleight and you guys are in my thoughts and prayers.....I think you both are so strong and that will in the long run help Kayleigh the most to recover.

Kelly H. said...

Just wanted you to know we are praying for little Kayleigh and your family, and we be praying this week through the surgery! Believing God for a miracle through it all! The Hubatka's

Anonymous said...

im so sorry to hear about kayleigh. my family is praying for her quick and successful recovery. i will be sending something out to you guys soon.
best regards, the thurber family.

pigpen7 said...

Just another friend from babycenter September '08 board. We are here still praying for your family. You are in our thoughts everyday!

Anonymous said...

Many prayers are going out to your family and for Miss Kayleigh, she is definitely a fighter! Keep your trust in God that he will continue to watch over your little girl. Prayers from Kansas City!

AliciaJohnson1983 said...

As with last nights sad news, I've been keeping watch on the blog. I prayed last night before I went to bed and let all my myspace friends know of your story. I pray she makes it through all of this.

Love, Prayers, and Blessings

Alicia

chdmommyof2 said...
This comment has been removed by a blog administrator.
T and M said...

Sendig lots of strong, determined, nothing-can-keep-us-down thoughts to Kayleigh. From another Tiny Preemie now all grown up. Every bit of determination she shows now is just a hint of what you're on for in the future Mom and Dad. I can't wait to hear of when Miss Kayleigh gets to go home and hang out in her beautiful pink and brown room!

M

Shannon said...

Hi. I found you through Ferris' blog. I wanted to let you know that we are praying for your precious baby girl. I pray that the surgery goes well. God bless you and your family!

Jason, Mollie, and Daxton Sheppard, molliesheppard@comcast.net said...

Hi Adam and Aimee,
Proud mother of twins: a 21 week angel and a 23.5 superhero with a PDA, ROP, pulm hypertension, CLD, and an ASD. We're almost 7 months old now and still in the hospital, but these preemies are amazing little fighters! God bless you and your family, and we'll be keeping Little Miss Kayleigh in our prayers!

Anonymous said...

Just wanted to let you know I spent most of yesterday reading this blog! What an amazing journey and story you have to share. Thank you for sharing. I pray for your precious baby girl and your family. May God continue to provide you with the strengh to face every day. I pray she does well with the surgery today. I will be thinking of you..

..God Bless you dearly Kayleigh.

Cathy from Noblesville, IN

ERICA said...

Sweet Kayleigh I have been thinking of you all day!! At a moment there I felt like I needed to do something but didn't know what! I posted on my bbc board Kayleigh's blog and if anyone has prayers and thoughts to please send them to Kayleigh and her family!! My family and I have been praying for you Sweet Kayleigh! The world is praying for you!! You can do it!! We want you home with your family Kayleigh!! So prove the dr's wrong and prove us right!!

My husband asks me how is Kayleigh doing today! I told him I haven't heard from Adam and Aimee yet!! LOL! Your blogg is like we are talking to each other in real life everyday about Sweet Kayleigh! Its like a "normal" thing for us!!

Anyway...enough of my blabbers. I don't think anyone has given up hope or ever will!! Kayleigh will grow to conquer everything!! God Bless You Sweet Kayleigh!!

Erica
Mommy to 2 boys
1 who was a 31 weeker

Anonymous said...

I am praying for a quick recovery for your little angel. I have been ready the story for a while now and try to read everyday. thanks so much for leaving the updates..

Anonymous said...

We are all praying for you. I have shared your story with my family and we are all praying. My girls said to tell you your daughter is beautiful. We too had a premature baby. She was 1lb 14oz. but was so blessed not to have too many complications. God Bless!

Your friends in Delta, Ohio.

Molly said...

Praying for Kayleigh as well as her Mom and Dad to make it through this bump in the road.

Anonymous said...

I have been following precious Kayleigh's story. You should be proud that you have such a lil miracle! But I know you already know that, I dont have to tell you guys that. My daughter is 10 months old and has been through 6 surgeries. She herself had a hard time with a few heart caths. She has had 2 open heart surgeries. And we dont know how many more she is going to need. I am praying for precious Kayleigh for a speedy recovery. I have heard very very good things about Boston, I actually called them for a second opinion with Aubrey. If there is anything you guys need, or if you need to talk at anytime, please dont hesitate to call us. I dont care what time of day or night! Your family is in my thoughts and prayers, always!!