11/21/08 9:00pm - 2 Problems - 1 Empty Seat

Throughout the whole day today, Kayleigh was in a somewhat stable position. Her sats were hanging around the high 80's - low 90's. She had been sedated several times because of her irritation to other's touching her or the vent tube she hates, which is causing her to gag. Her oxygen was higher than we would like to see (67%) and her nitric is at (20ppm), but it was doing it's job of keeping her oxygen saturation where it needed to be. It is the toughest thing as a parent to sit there and watch your child in so much discomfort and not being able to talk or touch her in fear of it agitating her more. Our comforting touch was not good enough right now and that breaks our hearts.

The first problem that is another unknown in the doctor's eyes is Kayleigh's heart rate. All the signs of discomfort, desaturation and hypertension can be side effects from the urinary tract infection, but the problem with her heart rate is unknown. Right now, Kayleigh's heart rate is resting in the 70's and active in the high 80's. That is no where near what her norm is (rest- 115/active - 140). The Echocardiogram is supposed to give some more understanding on why the heart rate is so low. It was completed this afternoon, but we have not gotten the results back like we hoped. I will update you as soon as possible.

The second problem has to deal with the antibiotics they are administering to Kayleigh for her UTI. The side effects include fever, flue like symptoms, high blood pressure and a few other issues that have slipped my mind. Being that Kayleigh is not in a stable position with her pulmonary pressures, it is quite concerning to the doctors when having to deal with these side effects that could take place very soon. Kayleigh's pressures were low before she went in to a pulmonary hypertension episode due to the UTI. Right now, her pressures are high and the side effects of the antibiotics can very easily cause Kayleigh to go in to another hypertension episode. All we can hope for is that when she goes in to an episode, it is caught quick enough to stabilize with the amount of nitric, oxygen and sedation. The scary part is she is already being given nitric, oxygen and sedation right now, plus battling with a low heart rate for some unknown reason. So in other words, this situation would be like adding gas to an already open flame.

Just look at this photo above. When you see a car seat, you think of new life, security and the excitement a family will cherish forever with their newborn's life. To me...This photo looks empty. Most of you out there hope and pray that Kayleigh will get passed yet another hurdle that is place in front of her, when you may not realize the small things beyond the NICU walls that are effected by our situation. The feelings and emotions deep down that no one can understand unless they have been there before. They are practically an impossible emotion to grasp when praying for a family like us who are in this position.

Walking out of the NICU today was by far one of the most emotional walks we have taken from the hospital. We were supposed to bring her home today, but instead, we brought home an empty car seat. We passed many people who's faces would brighten up, look down and then realize there is no precious little baby to see. One lady in the elevator looked down at the empty car seat and looked right at my face, not knowing I was watching her every move from my peripheral vision. I noticed the complete change in emotion on her face as she was probably thinking a million thoughts on what could possibly be going on in this family's lives to be walking out of the hospital with an empty car seat.

The hardest part was putting the car seat in the seat we planned to buckle Kayleigh into for the very first time. The moment we had been dreaming about for months was the time where all of us were in the car together for the first time and all the doors had just been shut. It is the time right before the car is started and we look into each other's eyes and smile, knowing we really have beaten all the odds. This was the defining moment that was supposed to happen today, and it didn't. Aimee and I lost it in the car and cried because we could not hold back our emotions. The emotion is so overwhelming that your heart just crumbles in a million pieces. I am a man who doesn't let the tears roll so easily, but I lost it.

Please pray for two things: 1) The doctors will find out what is causing the low heart rate and it will be fixed ASAP. 2) Kayleigh will not have any major side effects that will cause her to go in to another pulmonary hypertension episode.

Thank you & God Bless,

The Freemans :)


Melissa said...

I have been checking your blog about every 20 minutes today--just waiting for an update. I am lifting up Kayleigh, the doctors and nurses, and you and Aimee. May the doctors find more wisdom within them than they've ever known so that they may find and fix everything that is causing Kayleigh issues, may Kayleigh continue to fight and amaze us all with just how much God can do through even the smallest of His children, and may you and Aimee find PEACE in the midst of another storm. I'll keep praying!

Emily said...

So ironic that you talk about the low heart rate. This is exactly what happened to my micro when she got critically ill right around her due date. They never figured out what infection/illness she had but she was placed back on an oscillator, 100% oxygen and sedation. Her heart rate went from averaging in the 120s down to the 70s for about 5 days. It terrified me! Every day it seemed lower and lower. They did multiple echos and EKGs but everything was normal. The low heart rate was not affecting her perfusion or her saturations. The doctors told me that around term baby's heart rates do slow down and that if she were a term baby in the NICU they wouldn't even bat an eye at a heart rate in the 70s but it was such a fast change in my little one that it was abnormal. They did end up taking her off of one of her sedatives thinking that was causing the low heart rate. It helped raise it up a little to have her more conscious but not back to where it had been. Once she recovered it returned to her normal 120s. It was so strange. I hope this is what happens with Kayleigh!

Unknown said...

Many many heatfelt prayers and good thoughts being sent your way. I know how it feels first hand to watch your child lay there so helpless and nothing you can do to comfort. The emotion of that is enough to drive one insane. But I continue to pray that God lays his healing hands on Kayleigh. And I pray that God gives the doctors the knowledge to find out what's going on and fix the issue. I also pray that God holds you and Ammie close by his side to offer you all the peace, comfort and strength He has to offer.
In Christ,

Ali said...

Much, much love. Thank you for having the strength to post consistently and thoroughly. Saying prayers for your little miracle.

Anonymous said...

I know there are no words one can really say to make you guys feel better right now, BUT there are many many people pulling for Kayleigh and praying for ALL of you right now. She has been through so much and is still so tiny so I'm sure it's just taking time for her to recover from everything. She WILL pull through this just like she has everything else and you guys will be taking her home......not when you originaly thought, but soon. You need her to be 100% ready to go home and I think this was just her way of letting everyone know she needs a little more time to heal and recover fully. We'll keep praying for you all and hopefully in no time she will be at home in her own bed. Stay strong God bless!!!

Cheyenne, WY

Amanda-The Family News! said...

I just have tears for you. My heart breaks that you didn't get to bring your sweet baby girl home today....it will be soon!!! I am praying for you!
Amanda - Spartanburg, SC

Anonymous said...

That experiance you just explained with Kayleigh in the carseat was heart felt! BUT.... you are going to experiance it! Kayleigh is a fighter and she will amaze everyone again!
Oh...I so know that feeling of bringing the carseat and know my baby supposed to be there but he wasn't! My preemie got so sick 4 days after he was born. We were staying at a motel (NICU was 1 hour and a half away)and I had a gut feeling I had to get to him! When I got there the nurse said I remember her exact words "He is not doing good at all today." His heart would go to the 200's. I could see it beeting so fast through his chest! He had low blood! They didn't know what was wrong. Not sure if it was nec or not. They were about to take him to an exploritory surgery when his sats came back to normal. They would go back and forth. Dr's did all kinds of test's and nothing came back positive. I broke down and was so histerical crying "GOD DON'T TAKE MY BABY AWAY!" At that moment I don't know if god came upon me or what! I just came to an understanding, Everyone is praying for him. God listens and he knows whats best to do! My son had a pole of 5 different meds going into him! Guess what... He is now a healthy 2 yr old! To this day they don't know what happen. No tests showed infection anywhere.
Kayleigh will over come this she always does! she just wants to add another worry white hair for all of us again! ;P God Bless You Kayleigh! God Bless You Adam and Aimee! Sorry for the Novel!
Mommy to 2 boys
1 who was a 31 weeker

Samantha Franklin said...

Your post brought back so many memories of our NICU stay with our 3 yr old son, who was born weighing 1.4 pounds. The up & down emotions and numb saddness of that empty car seat and all the things at home waiting for your baby is so hard. But don't give up! Nahum 1:9 says "affliction has left, and will not rise up again". I posted that scripture on my son's incubator after several horrible scares and it was in faith, because I kept thinking, "what if it looks silly and untrue, if it isn't fulfilled?" But you know what, I still have that little poster and God's Word did not return void. He sent His Word and healed my son. His Words are life and health to all our flesh (Prov. 4). We would sit at our son's bedside and speak scriptures very softly over him, and I believe that is what saved his life. I pray for strength and peace and complete healing, in Jesus Name. I pray for Kayleigh's heart rate to return to normal, for her pressures to be perfect, and for all infection to leave her body. Also, we would pray that scripture in Matthew that said "even if we drink deadly poison, it will not harm us at all" over our son when he had drugs with horrible side-effects. We would curse all negative side-effects and pray that the drug would ONLY promote health and healing, for God to anoint it to bring healing ~ no harm shall befall Kayleigh and no sickness shall come near her dwelling. All these are scriptural prayers, and we agree with you for healing! Bless you!

Anonymous said...

Adam and Aimee,
I will pray for those two things and more -- that you and Aimee feel peace and confidence that you WILL be bringing that gorgeous little girl home in that pretty carseat once she is well. She will pull through this, she will. God has His plan and though it is so terrifying just waiting for it to play out, you trust Him to do the very best thing for her.
I just found out that my cousin who I am very close with has breast cancer tonight. But I look at your faith and I see the miracles God has performed on Kayleigh and it inspires me.
I have so much faith that my cousin will get through this valley of her life. She has small children -- why some people are put through trials and others are not I will never understand.
But just know that Kayleigh has strengthened my own faith in God and I can pass it on to others. I love your little girl very much! I call her my cyber baby! She has affected so many people in so many ways. You and Aimee have as well - your faith is your foundation and it is so strong.

She will turn around and be her happy sweet self again very soon -- we will be praying for her every day.

Joe said...

Oh you all - the carseat was such a symbol to me as well. After the third such a trip, our NICU let me just leave it there to prevent me from having such a hard time with the empty walk to the car. You are so close. Take time to be sad and frustrated so it doesn't overwhelm you. There are so many people waiting to help lift you back up again. All of the love, hope, and healing in the world.

Lorena de Bianchi said...

We are praying for you!! Trust that God is with you and Kayleigh, there is nothing more we can do at times like this but have FAITH, it is the only thing that holds us together!

My hear aches for You and Kayleigh, I will continue praying for you guys until she's home.

BELIEVE she will be home soon... that day will come.


Lorena de Bianchi

The Woollard Family said...

I can't imagine what y'all are going through...but my thoughts and prayers are with each and everyone of you.

-The Woollards

Nelson Family said...

Adam and Aimee, words can not describe how I feel for you guys right now... I have had to take the car seat back as well. I had to carry it two blocks back to the Ronald McDonald house, by myself. I was beside my self crying and talking to my spouse who was 1.5 hours away. I am so happy you do have each other for support.
These amazing babies have a way of baffling doctors and nurses don't they. Our Hannah got very sick, staph infection in her lungs, Her side effects were very similiar and actually had to have a blood transfusion twice in one week to help get her through it as well as a few drugs that caused additional problems. She did not go home when I was ready, But she did go home when she was, and truely that is what you want.
I am sorry it was not today, but it will be soon.. she may look bad for a few days, however, she will start to improve and latter the doctors will say... um I don't know what happened, but she is fine now!
I am praying for miss Kayleigh, both of you and your family.
I have to say.. I never told any one the second time we got closer to leaving the hospital because I thought I would jinx it the second time, I called family and friends and posted it when she was in the car!
prayers and best wishes,
moscow idaho
25 weeker

Lindsay Dean said...

Praying for you and your sweet baby girl Kayleigh. As a heart mom, I am too familiar with all of the ups and downs of this journey that God has chosen for us. Stay stong, love on her everyday, and find comfort in having eachother. God Bless and I will be keeping a close eye on your sweetheart.
Heart Hugs!
Suzie Dean (Mom to Lindsay: HLHS)

Unknown said...

I am praying for you all! I am sorry you guys such a hard day...but I have faith that you will bring your beautiful daughter home soon.
Bod Bless!

~Kayce said...

I am so, so sorry for all that you have had to endure. I have found that everything changes when you become a parent. Every emotion and feeling you have is deeper and more real. God has blessed so many of us through Kayleigh's life. I just know He's got great things planned for your sweet little angel. Peace and love to you both tonight.

Tanner Blake's Blog for school. said...

You are right that nobody can understand unless they have been there themselves. You are so strong and such an inspiration. My baby girl Maysyn is 9 months old and just before we were pregnant with her we lost a baby. I basically had to go to labor and delivery like everybody else except my baby hadn't made it. It was that same feeling that you described the stares and the puzzled expressions wondering why is this couple crying and where is their baby? We pray for your daughter every day and don't take for granted one second we have with our healthy baby. Anytime I think about comlaining that I am tired or that she is fussy all I have to do is think of you guys and realize that you would give anything to have that be your biggest worry. Hang in there.

E @ Scottsville said...

Followed a link from MckMama's blog to another blog and then to your blog. Wow, I'm praying for your whole family right now. I have four of my own and I can't imagine what you have to be going through right now. But we serve a might God who knows the future that we cannot yet see.

In His hands...

In His love...

In His timing!

God bless!

Jennifer said...

I will pray for both. Kayleigh, you are a precious little girl, and you can get over this.

Anonymous said...

Always praying.....
With love from Southern NH

Anonymous said...

Still praying for Kayleigh. Kayleigh you keep fighting. God bless you and your family.

Rhi mommy to Sutton my 30 week miracle baby.

Anonymous said...

Adam & Aimee

Your post today brought back the thoughts of our NICU stay and that empty seat. Know words are going to really help at this time, but Adam I have to share a story with you, my husband is a Firefighter he Cries for NOTHING, i have know him for 11 years and not one tear, when my daughter was in the NICU a fellow firefighter who had also experienced a NICU rollercoaster told him that bringing a daughter into this world is going to bring you many tears happy and sad ones, don't hold against you I am a man i can't cry when in reality Crying sometimes is the best thing for someone. So never worry about crying and Let the GOOD LORD HOLD YOUR WHOLE FAMILY IN HIS ARMS AND BEFORE YOU KNOW IT YOUR SEAT WILL BE FULL. It took us 7months to have a full seat and today she will be 1. Trust in the lord he will guide you.

Anonymous said...

Poor Kayleigh! I hope she stops suffering because it is not fair for such a tiny baby to suffer so much. It is clear she is distressed. I feel so bad for her. I understand you guys may be sad too but imagine poor Kayleigh! She doesn't even know what it is like to be home. Hopefully she is securely attatched to someone in that hospital because otherwise she must be very afraid. My prayers go out to your family but mostly Kayleigh because it is not her fault at all that she has to go through all this poking and prodding.

Anonymous said...

Adam & Aimee,

We are all crying along with you. That post was very emotional and it brought back many memories when our family was in the NICU. When I had to leave the hospital 3 days after Ryan was born, without him, I don't think I would make it. Dean and I were there for each other and cried many tears during that 69 day stay. We can tell you love each other so much and your already stronger from this experience. Thank you for always posting no matter how sad your feeling. Much love and many prayers!

Karen, Dean & Ryan

Anonymous said...

Please update soon! I am praying for your sweet baby girl, we have been following this from the begining from bbc. I just had a daughter 9 months ago after two boys. They sure are something special! It truly breaks my heart to know what you all have been through. I know I couldnt have been as strong as you both are!

Jennifer in NM said...

Aumee and Adam I cannot imagine being in your shoes right now. But I do want to tell you that there are others that are being deeply touched by this whole situation.

Case in point, me and my very dear friend Crystal were texting back and forth last night and I had told her that I am having a very hard time will this. After a couple of texts she told me that we all have a cross to bare. That really hit home for me. I asked her "Who is the decider of the cross we must bare? It is unfair for kayleigh and it is unfair for her parents." And she replied "It is too much to question just pray for them and yourself."

Last night I began to lose the new found faith that I had gotten from following Kayleigh. So I did as Crystal suggested and upon waking this morning I feel as if this is just going to be a bump and she will be fine. In the back of my mind, I know that God has the ultimate plan and we do not know why He does what He does, but there is a reason behind everything.

I will keep praying for you and your precious daughter. I pray that soon she will be riding home in her carseat and that you guys will have that long awaited look into each others eyes and that smile that will never erase. Then we can pray that she never has her heartbroken by a boy and other things.

Much love and prayers,


Robin E. Kitson said...

There is hope. My co-worker (Scott how that name gets around)has a 7 yr old grand daughter who was born at 25 weeks weighed less than one lb had all the problems that Kayleigh is dealing with now she just has to wear glasses. He has put you guys on his prayer chain as well as the one I put ya'll back on this week. The LIGHT of God Surrounds her, The LOVE of God enfolds her, The POWER of God protects her, The PRESENCE of God watches over her and the miracle working power of God IS with her, and all is well


Kala Family said...

Praying for your requests and that her carseat gets filled.
Love and hugs,
Karen and family

Anonymous said...

I know how you guys feel in this moment. Just think, God is going to make sure that Kayleigh is completely recovered before she goes home.We're praying for you and for your precious little girl she is not going to give up because she is very strong like her mommy and daddy.
God Bless You.

Robyn said...

My heart felt very heavy for you guys when reading the end of your post. Reading your words brings back my own memories and the heartache we felt when we left the hospital time after time after time without our son. I am praying to the point of begging that nothing is majorly wrong with Kayleigh and she decides the Drama Queen act isn't for her and things get back to normal!

aimee gillespie said...

Continuing prayers for little Kayleigh and for the doctors who are trying to figure this all out. I know too well how hard it is to leave your little one there day after day. I'll also be praying for comfort for the two of you as you are going through this roller coaster of emotions.

Aimee Gillespie

Jenny Stoner said...

Hey guys! I'm so sorry you didn't get to take Kayleigh home today. I remember so vividly how difficult it was to walk down thos LONG halls over and over without Nathan. Hang in there. She'll get to come home soon. I would always remind myself that if they had ANY doubt at all about how he'd respond, I wanted him to be there and not at home with me...heaven knows I didn't know what to do. You and Kayleigh are all in my prayers.

Jenny Stoner

Sarah Benedict said...

You guys have not left my mind at all in the past 3 days. I'm praying really hard for you all and the doctors so that Kayleigh can be on the mend quickly! God works miracles remember that!

Mel said...

I am so sorry your angel is going thru this and you had to leave without her today. We will continue to pray for her and for you Aimee and Adam. And in the meantime, cry, scream, yell, eat copious amounts of chocolate- whatever you need to do-do it.
Know that MANY are praying for you.

Psalm 126: Those who plant in tears will harvest with shouts of joy. They weep as they go to plant their seed, but they sing as they return with the harvest.

Ephesians 3:16: I pray that from his glorious, unlimited resources he will give you mighty inner strength thru his Holy Spirit.

Mostly, just know that He is near you.

M from OK

Anonymous said...

My heart goes out to you Aimee. I can't even imagine what you are going thru right now. I continue to pray for Kayleigh!! Hang in there
Baltimore, MD.

Heather Plis said...

Continuing to pray. We prayed tonight for Kayleigh and my almost 4 year old daughter Haley told me that she named her bear Kayleigh! We are sending lots of love to you all and praying for you to feel a peace that only the Lord can bring.

AliciaJohnson1983 said...

I know it's getting past the point of shear exhaustion, but hang in there. Let's hope that just maybe, this is the last hurdle to climb over for you two and Kayleigh. As much as an emotional roller coaster this has been, you will make it through. Get some rest, sleep in and recouperate from all this stress. God Bless

Jennifer said...

Praying for your sweet pea and asking GOD to surround you in comfort & joy. Hoping that you are getting some kind of rest.

Lipstick Jungle said...

Aimee and Adam I came by the first time a few weeks ago. Adam had posted a prayer request on a blog of a friend of mine. I read every post that night. And I never stopped praying for Kayleigh.

My computer crashed towards the end of my reading, and I could not find your blog. Because I connected via a link, I had no idea where to start.

Today, something told me I needed to find that link and come back to visit. I went through thousands of comments on my friends blog looking for that request. I couldn't find it. I went through my history again, and while I did not see your blog address, I found a link to a picture I had clicked on. I back traced it, and thank God, I found you again.

I wished the news would have been better to return to. I purposefully read from the bottom up - I wanted to be fully aware of all that had happened over the past few weeks. I pray that your lack of posting today is because of good news.

I will continue to pray tonight that Gods light will shine down on your precious miracle, and allow her to live in your arms.

God bless you both.

Anonymous said...

There are no words to describe my sincerities. All the prayers and hopes in the world cannot take away your hurt. But still thats all we have to give. I wish there was more we could do.

Here's more hope and prayers for your family.


Anonymous said...

Aimee and Adam, I wish this road was easier on all of you. Someday in the near future that seat will be full (and later believe it or not, very heavy:) and hopefully the pain of it being empty will be forgotten. We continue to pray for Kayleigh. Hopefully she turn this around in no time. God Bless, Lorna