11/19/08 - 6:11pm - Update

Aimee and I just got back from the hospital and right now Kayleigh is in a somewhat stable position. She is still breathing hard, desatting and gets very irritated by any touch or movement. The doctors are not quite sure what the cause of this is yet, but they are treating her as if she has an infection of some sort. If that is ruled out, then we continue to look for problems.

Her echocardiogram came back early this morning and her pressures were as high as they were before her surgery, which is not a good sign at all. Her pressures were in the high 70's during her first echo. Since then, the pressures have dropped to the low 60's, which is better. We are not quite sure what a good baseline is since her pressures have yet to come down all the way. The other day, I believe her pressures were in the low 50's or high 40's. Don't quote me on that though.

The x-rays came back that Kayleigh's stomach was very distended and full of air. That could either be from the fortifier or the heavy breathing she has been doing. One thing that Aimee and I noticed is that Kayleigh was taking all of her bottles right after her heart surgery when they were feeding her plain breast milk. When they started to fortify the milk with breast milk (1/1), she started have problems finishing her bottle every other feeding. The day before yesterday, they decided to change her ratio even more, (2/1) fortifier over breast milk. Then she was really struggling even more to take all her bottles and then this problem came about. It may not relate to the issue, but it could possibly cause some kind of trickle effect. I know how important the fortifier is, but we have had issues before and it is just easy to blame everything on that. Our doctor said that no matter what, when she starts to feed again, we'll start her off with plain breast milk to see if that makes a difference.

Our NICU primary nurse was taking care of Kayleigh early this morning and said she was in bad shape when she came in to the NICU. When she says things looked bad, they look bad and that is a scary feeling. Kayleigh was breathing so hard and struggling to keep her sats up. They went from .1 liters of flow to 6 liters of flow just to get her sats in a comfortable place. Our nurse suctioned Kayleigh's nose out and it helped with her sats a little, but only for a short time. Kayleigh has been on Lasix and the x-ray showed no sign of build-up in her lungs that was causing the problem. We will just have to wait and find out what the blood culture says.

We can only pray that this was something minor that can be fixed. The scary thing is no one knows what it is yet. It could be a heart problem, food problem or an infection of some sort. The first results of the blood culture comes back within 48 hours, so hopefully that will point us in the right direction. In the mean time, please keep the prayers coming!!! We know how awesome the power of prayer can be by the amazing miracles God has done so far.

Aimee and I have been more scared than ever right now because this just hit us so hard, and out of the blue. I know that coming home is further from our site, but all we want is for her to get better. This stress is taking it's toll on us emotionally and physically, but the reason Kayleigh is a fighter is because we are fighters. We are going to be as strong as we possibly can be for her and that is all we can do.

I pray for everyone to back us up and let's continue to fight this fight together through prayer, so we can bring our little girl home someday. Whether it is in a week or five more months from now, if God's plan is to use Kayleigh to touch that one certain person, then we will bust our tails to make that happen and spread Kayleigh's story until our job is done. So reach out to your family, friends, churches, and co-workers and let's do the will of God together so Kayleigh can come home soon.

Thank you for ALL so much for your prayers and please keep them coming!!!

God Bless,

The Freemans :)

54 comments:

The Baldwin Family said...

Kayleigh and your family are always in my prayers...I don't comment as much as I should, but I keep up with Kayleigh daily and I will pray extra hard that she gets better quickly and the doctors can figure out what it is that she needs to get back on track for going home. I am sorry that you guys are back on the NICU roller coaster. Stay strong, you're awesome and Kayleigh is luck to have such strong wonderful parents!

Kim Baldwin (Zachary's Mom)
Houston, Texas

Valerie said...

{{{Hugs}}} And lots of prayers coming your way.

Anonymous said...

Oh Adam and Aimee I am so sorry to hear she is having a rough patch again. I will pray that it is just that though, just a rough patch. She is always in my prayers as is your whole family. I pray the doctor's will figure this out quickly. God Bless.

With love from Southern NH

Kelly said...

I am so sorry to hear what you are going through right now with Kayleigh. What a bummer... My family and I are praying extra hard for her to pull through this final hurdle before going home with you. We know she can do it. She is a fighter. I have shared your story with some close friends of mine who are very strong in their faith and they will also be praying for your little one. You are in our prayers more than ever at this time of need. We wish we could just wrap you up in a big hug and make it all feel better. Stay strong.....

Nelson Family said...

I have been praying all day for your little girl. A thought came to me and I thought I would ask.. are they using the Human milk fortifier? They tried that with my daugther and she had huge problems with it.. instead they switched to adding a 24 cal formula to it.. It worked much better! I am not sure that is the cause of all of what is happening with your daughter, but maybe it can help.
I pray she recovers and that the doctors and nurses find the source of the problem and soon.
I am so sorry and I understand the sadness that has come from this.. I just want to say.. it is truely ok to cry! Sometimes that is sooo needed. I am starting a prayer chain.. and a food fast for your daughter.
I send you lots of love and comfort.
-Karen

mommyof2andanangelinheaven said...

I just recently today found out about your amazing, precious,beautiful daughter, and that I am praying for your family in this hard, emotional time. I wanna really thank the woman that posted something on Cafemom.com about your beautiful daughter. I am hoping things will get better, and I see them getting better. You both are wonderful parents and I adore that. I cant imagine what you are all going through. I will keep you in my thoughts and prayers and everyday I will make sure to keep up with her story. God bless your family!!
Tess

mommyof2andanangelinheaven said...
This comment has been removed by the author.
Erica said...

THANK YOU BOTH for updating! Been thinking and praying for sweet Kayleigh all day! I am so sorry this is happening when Sweet Kayleigh is so close to going home! =( Maybe since she has had so many surgeries with no set backs, this will be just a minor set back for her body to heal correctly! She has conquered way to much and she will continue to do so! God Bless You Kayleigh with Health! We want you home with your family!!

Erica
mommy to 2 boys
1 who was a 31 weeker

Lo and Lil said...

Sending you MANY prayers and lots of love from Brigham City, Utah.

Martha Compton said...

We're praying hard for Kayleigh. Campbell got an infection in the NICU and it sounds a lot like Kayleigh right now. She suddenly started desatting and struggling to breathe and was very irritable to stimulation. They started her on antibiotics and intubated her to let her rest and she was off the vent and feeling better in a little over a day. I pray that Kayleigh has a similar recovery!

Anonymous said...

My thoughts and prayers are with Kayleigh as she gors through such a rough patch. We all know what a fighter she is. May god give her the strenght to keep fighting. This situation sounds so much like the last time Kayleigh had problems with the fortifier. I have a question have they give your beautiful daughter any pain relief? It sounds like she is in lots of pain. I am spreding the news so everyone one I know will pray for Kayleigh.

The Plis family said...

Praying hard...my heart is heavy for you all. (Kayleigh) can do all things through Christ who gives (her) strength!!! Phil 4:13

Ali said...

Still praying. Thank you for the update.

Hanna's Mommy said...

THINKING and PRAYING for you all! Hang in there!

Aimee and I said...

Karen,

They are using Similac Special Care to fortify the breast milk with. Someone asked if she is on pain medication and she is not. When she is not stimulated, she is not showing signs of irratibility or those "pain" signs. Kayleigh shows signs of pain by clinching her fists with her thumbs tucked in and her arms tighten up. She is not showing any of those signs.

Thanks,

Adam Freeman

Anonymous said...

Has Kayleigh been evaluated for any airway issues? Sometimes babies (especially the little ones) can have swelling from being extubated and re-intubated a number of times. Is she moving air well through her lungs?

Has she ever received Decadron (steriod) before she was extubated? This relieves the swelling.

Hang in there, Kayleigh is one strong little girl...and her parents are tough too :)

Anonymous said...

I have told my daughter (mother to a 25 weeker still in the NICU) that God chooses special parents for premature babies. Be proud He chose the two of you! Prayers are continuing. Kathy from Orangeburg, SC

What are the side effects of fortifier?

Anonymous said...

I agree with one of the other posts. What kind of fortifier are they using? Enfamil or this one:This study proves what most experts have known for some time," said Scott Elster, CEO of Prolacta Bioscience. "Human breast milk is far superior to any other food that can be given to an infant. In the case of premature infants, human milk-derived fortifier is a better option since it delivers only native human proteins and fats."
It could be a food allergy.

Praying that you feel God's arms around you and Aimee. I am praying so hard for all of you. Enough is enough.

Anonymous said...

Praying for you everyday. I feel so fortunate my little preemie is home and I can cuddle her. I wish that for you soon. You both are an inspiration and wise beyond your years. I am a better person for following your story.

Aimee and I said...

I am not sure if she has been tested for airway issues. I will bring that up along with possible RSV questions. Thank you all so much for giving us some good ideas to ask about.

To others who are asking, the fortifier is called Similac Special Care. The reason she needs a fortifier is not for just growth purposed, but for nutrients that the breast milk lacks in quantity. There might be great nutrients in breast milk for a baby, but a preemie needs more of it and quickly. I wish breast milk could do it alone and we will move to that, but since Kayleigh is so small, she needs as much as she can get right now so she doesn't develop problems down the road.

God Bless!

Adam

Carol Ann said...

Your sweet girl has been in our thoughts and prayers all day and will be throughout the night. You two hang in there. Get some rest and take comfort in the fact that so many of us are pulling for your baby girl to be well and at home with the family that loves her so much.
Tomorrow is a new day.
Love The Nadeaus

Anonymous said...

Oh I am so sorry to hear of this problem as always Kayleigh will fight hard and have a postive outcome before you know it. I have shared your story tonight at our local Fire Department which my husband and I belong to we have asked them to pray for Kayleigh as they did for our daughter while in the Nicu, their prayers have always helped. Hang in there the Lord will guide you in the right direction.

Tiffany J said...

Has she been allergy tested?

She may very well be allergic to the fortifier, and thats why she's having so many issues on it :(.

We read every day, and i'll have to take some pics for you, when i get around to it! :)

-Tiffany

cincymomof4 said...

Adam and Aimee: Next week we will all read this blog and see again how God works miracles. He will bring her out of this too. I know it is hard just waiting for answers.

Could she be allergic to the fortifier? It just seems like she does so well on only breastmilk. I'm sure you have asked every question imaginable.

Kayleigh will make it through this tough time too -- she is SO strong and maybe it is just an infection and they can clear that up quick too.

Thanks for keeping us all posted. I'll pray for her always!
Karen
cincymomof4

Emmy said...

I'm sure you hear stories all the time on this blog, but I want you to know that I'm always praying for your little one. My cousin went through many of the same things as your dear one. She was born at 25 weeks and weighed in right at a pound. She had open heart surgery, appeared to be getting better, then had some setbacks.

She's now 21-years-old and a track star!! Stay strong!!!

Julie Kaz said...

Adam & Aimee,

I am so sorry to hear what you are going through again! We have said MANY prayers for Kayleigh and your family here in Wisconsin. Stay strong and just remember that God is right there with you! If he brought you to it, he will bring you through it!!!

When my son was in the NICU they had to give him the fortifier but they used Carnation Good Start! They say that the proteins are already broken down and that it is easier for the tummy to digest. Both of my preemies could not tolerate the Similac products but did wonderful on Good Start.

God Bless you and your family.

The Kaz Family

Anonymous said...

Thanks for the update!! We will continue to pray here in Iowa for Little Miss Kayleigh!!!

Anonymous said...

I am a NICU RN of 15 years....what about plain breastmilk but adding someting called intralipids to it-I know every NICU is different but just wanted to throw that out there.
GOOD LUCK....in my thoughts and prayers!!!!

Denise said...

Thank you for the update! Parker and prayed for Kayleigh tonight as I was rocking him before bed! I wonder if she may have some kind of allergy to the fortifier? It seems like whenever she is on it it is worse. Remember as her parents you have EVERY right to speak up and say, hey, we want you to do this, or we feel this. I remember when we did that with Parker. we made them give him a wedge and next thing we knew his reflux was better and he was home!

I pray that you can find some peace tonight. Try to get some rest and know we are all here for you!

Heather said...

Kayleigh, You have GOT to stop scaring mommy and daddy so much! Save some of this for your teenage years:) I'm praying for you and your family, little girl! Blessings!

Anonymous said...

The California Cavanaugh's are sending their heartfelt blessings and prayers. We read and follow Kayleigh every day, we love you all, and we are with you....we are family, and we love you... you're in our prayers today, and everyday.

Cristi said...

Just recently found your story. Just wanted you to know that now you have one more person to lift your sweet baby up to our Heavenly Father who hears our prayers. In His Name, Cristi

Anthony's Mommy said...

I'm so sorry you guys are going through this again. It seems like every time they give her that fortifier something happens. I know Anthony was getting sick from my breast milk toward the end (at least thats what they told me) and he started having really bad apnea cause he had gas and because his tummy was so full it make it hard for him to breathe. They put him on Similac Alimentum and then when he came home our Lung dr said adding rice to his formula would help. I know some people say giving them rice so little is bad. But we see a lung specialist and he knows all about stomach issues (cause they can mess with breathing.) The rice REALLY helped. It also added calories Anthony needed. You might want to check into adding rice to the breast milk instead of fortifier....

Again I'm so sorry you guys are going through this. You are such a strong couple.

Kim

Amanda-The Family News! said...

Praying for your sweet little girl....I am adding you to my blog for babies needing our prayers!!!!!
Amanda - Spartanburg, SC

Kala Family said...

Kayleigh you really shocked us! I never thought I would be reading these last few posts. Keep fighting girl! We love you. We've been praying for you all day today and will continue to for as long as you need us.

Anonymous said...

My thoughts and prayers are with your family and little Kayleigh!

Keri said...

Your family is blessed with some of the strongest people I've never met...I can only hope to draw from your strength when I need to, but right now...I'll let you keep it all! Stay strong...Little Kayleigh has it in her to keep fighting...she has shown that all along!! I am continuing to pray for you, your family and especially for the health and quick recovery of your little girl.

Amber said...

I will be sending lots of extra thoughts and prayers Kayleighs way tonight. I hope it is a minor problem that she will overcome. Poor baby girl needs a break, and so does mommy and daddy! Hugs to you all, stay strong.

Babyksmom05@yahoo.com

Jennifer said...

We're still praying everyday (along with checking the updates) for Kayleigh and will continue to as she overcomes this little setback.

Stephanie said...

Prayers for you sweet Kayleigh. I still believe you will be going home with Mommy and Daddy soon.

Rhonda said...

Baby Luke and I are praying for Miss Kayleigh! She has overcome so much and I pray that God helps her overcome this!
Love to you all,
Rhonda and Luke Smith

zzzzzbaby from bbc said...

Kayleigh just doesn't want you two to get too comfortable, so she just has to shake things up a bit. She seems to have a pattern of doing that, doesn't she? I betcha she'll be feeling lots better in a day or so.

Lots and lots of prayers headed your way!

Nelson Family said...

I have to say wow! what awesome people are out there to try to give you options and help. I have read so many good points and ideas, I know that you are doing all you can and so are the doctors, but ideas are never a bad thing and I saw some good ones.. you are so blessed to have so many people trying to help you get your baby healthy and home.. It is awesome! I only wished I could have thought to do all that you have to bring people together for this one beautiful and special little girl..
There are many people that are shocked on the fact that she was doing so well and then she is having a set back, The sad things is.. this is NICU life. that is why the NICU is often refurred to as a rollercoster. It really sucks!
Even after the NICU there will be times of stress.. fear.. but know, KNOW that she will always go back to being your wonderful little Kayleigh!
All that I know are praying for her!
lots of prayers I know God hears them!
Also- have they considered reflex? It is very common in Preemies...and it could be agravating her throat that is probably already sensitive and it can cause problems with breathing and saturations lvls. It could have also cause her to asperate and build up some preasure in her lungs...
HUGS & prayers
-Karen
(sorry I have never been a good speller)

jag said...

I'm so sorry to hear about this unfortunate turn of events. Your hope, dedication, and faith are inspiring. I will be praying for all three of you.
God bless,
Jenna

Anonymous said...

Have you checked her gums - is she teething? Colic? - sometimes it's the little things - maybe she's starting to have 'normal' baby problems. You could try an chiropractor if there's one at the hospital. There's lots of information on the internet, but chiropractors have had good improvements with preemies - especially with colic and stuff.

Becky said...

God bless you and your beautiful family. I will be praying for you non-stop. Please know that you are not alone.

Love,
Becky

Joseph said...

Blessings and prayers for all of you.
Meg

Los Bianchi Carrillo said...
This comment has been removed by the author.
Los Bianchi Carrillo said...

I'm so sorry to hear Kayleigh is back in the NICU. Hang in there guys, it's part of the process of having a preemie. Someone once told me that if we wanted to make it through this process we needed two things... FAITH & PATIENCE. So trust that God has Kayleigh in His hands and she will pull through this just like she has in the past. Babies are much stronger than we will ever be, so have faith in her.

Praying for the three of you! Lots of Love.

Lorena, Christian & Agustina
Guatemala

pigpen7 said...

Our thoughts and prayers are with you everyday! We are hoping it is something minor that is easy to fix!

nani said...

I thought she was about to go home. My prayer chain prays 24hrs a day for 30days, gotcha covered.

Jason, Julia, and Penelope's Nani

Danielle said...

I've been following your story since BBC, I have a Sept. baby. Kayleigh is an amazing strong little girl, a precious gift from heaven. Our family has been praying for her and for your family to continue have such amazing faith and strength. We will continue until she is home safe in her loving parents arm.
God Bless
Danielle

Anonymous said...

my thoughts and prayers are with Kayleigh! I continue to pray for Kayleigh everyday and read your posts to get all the updates. i am so sorry that she is having a set back. And yes you were anticipating her coming home soon but as you said at this point all you want is for your little girl to be strong and healthy. You and Aimee are an amazing couple and the fight the two of you have in you to stay strong for your baby is amazing. This is helping Kayleigh continue to get better. i hope this is a minor problem that can be fixed easily. Stay strong!
Katie
Baltimore, MD.

Anonymous said...

You two are so strong! And she seems stronger and more tenacious than most adults I know. This fight isn't over. If there's one thing I've learned from dealing with docs and hospitals - you MUST be your own advocate. You know what's best and you know your child better than anyone. Get tough and demanding with everyone. She deserves the best treatment available. My thoughts are with you. Fight fight fight, little girl!!