9/23/08 - The Wrong Direction

Things are moving in the wrong direction today. Early this afternoon, Kayleigh started acting up and showing more signs of irritability than normal. Since being put back on the vent, her oxygen has been set around 40% and it hasn't gotten any better. When we came in late this afternoon, things got worse and she was placed on 100% oxygen. Her sats were hanging in the low 80's for a short time and quickly started dropping. I have never seen her not do well on the vent, so when you see her sats dropping in to the 60's on 100% oxygen for 30-45 minutes straight, you think there is no place else to go and things are going to get ugly before you know it.

They performed a CBC (Complete Blood Count) and found out that Kayleigh has more than normal immature white blood cells, which shows signs of an infection. So now Aimee and I are freaking out. We had a surgery that we could have done without and she might be getting an infection from it. They started antibiotics and are also going to give her another blood transfusion as her hemoglobin was less than normal. Since the vent was at its highest settings and she was not oxygenating her blood well enough, they brought in a machine that hooks up to the vent that delivers nitric oxide through her system. The endothelium (inner lining) of blood vessels use nitric oxide to signal the surrounding smooth muscle to relax, thus resulting in vasodilation and increasing blood flow. (I stole that from Wikipedia) Wikipedia said it exactly right. It started to work because her sats (which were constant at 60%) started to rise and level out around 92%.

That makes us feel much better, but we are still not out of the woods. They have been administering the lasiks (diuretic) to help remove the water off her lungs. She also lost 100 grams since last night which is not normal at all. Being that she had a lot of blood drawn and the lasiks made her pee a lot, they are contributing those factors to the weight loss. Our biggest concern may be that her VSD (hole in the heart's lower chambers) is the problem, possibly causing her heart to overwork/go in to failure and she is not big enough to do the surgery to close it.

If the blood transfusion, nitric oxide, antibiotics don't do the trick, they will be ordering an echocardiogram to look at her heart tomorrow.

Please keep Kayleigh in your prayers and hope that she can pull through this like she has with every battle before.

Thank you so much!

God Bless,

The Freemans :)

30 comments:

shannnah said...

I will keep kayleigh in my prayers! may she go back in the right direction...

campbell9023 said...

Kayleigh,

I am praying that God lays his healing hands on you again, and helps you pull through this. I know that you are tired because you have been through so much, but you smiled for your mama the other day and I saw that you were saying that you were going to keep fighting and for her not to worry. Rest baby girl, gather your strenght again, and let's get you eating!

Adam and Aimee,

My heart dropped the minute I read the headline. I am so sorry. I will pray extra hard for her and you guys. You guys are going through so much and I can't begin to imagine what you are feeling. I am hoping that this is only a hump for her to get over and that they administered all the right things at the right time.

God, please bring Kayleigh through this unscathed. Allow her to grow and recover so she can go home with Adam and Aimee. Let this be the last battle she must fight until she has to deal with teething and her first heartbreak.

Jennifer
jlcampbell2008@yahoo.com

Sarah J. said...

Lord, I come to you tonight asking you to gather your angels around Kayleigh. Give her strength to continue this fight. Hold her in your arms and protect her tiny body. We know through you that all things are possible and that you have been holding Kayleighs hand through every moment of her life. Please guide the doctors and nurses in making quick, effective decisions. Guide their hands as they go about their daily tasks and adminster care. Guide their minds as make decisions. Lord watch over Adam and Aimee, comfort them with the knowledge of your amazing power and never ending love. I ask you all this in Jesus' name. Amen.

I am praying for all of you tonight.

Sarah J. said...

Lord, I come to you tonight asking you to gather your angels around Kayleigh. Give her strength to continue this fight. Hold her in your arms and protect her tiny body. We know through you that all things are possible and that you have been holding Kayleighs hand through every moment of her life. Please guide the doctors and nurses in making quick, effective decisions. Guide their hands as they go about their daily tasks and adminster care. Guide their minds as make decisions. Lord watch over Adam and Aimee, comfort them with the knowledge of your amazing power and never ending love. I ask you all this in Jesus' name. Amen.

I am praying for all of you tonight.

With love and hope-
Sarah J.

Pennie said...

Poor Kayleigh, you are too tiny to feel yukky. Just hope the transfusion will make you feel lots better. Trusting God to make you better.

Praying for mommy and daddy too, because it isn't easy for them when their baby is sick.

Hugs,
Pennie

Danielle said...

I just wanted you to know that I just lifted your family and precious Kayleigh in pray. May you find peace and comfort tonight. May Kayleigh's little body rest and fight off any infection. God holds you in his hands and never leaves your side. God Bless your family.

Erica said...

God Bless you sweet Kayleigh!! I pray for health for you sweet Kayleigh everynight! Stay Strong sweetie!! You can over come this as you always have!! You have two wonderful/amazing parents fighting for you hon!! God Bless you all with strength!!!

Erica
Mommy to 2 boys
1 who was a 31 weeker

Nikki said...

Keep fighting Kayleigh!!! We are praying for you. God Bless You All. The Conways

Carly Nicole Elliotte My Micro Preemie said...

Poor girl. I know it's rough guys but keep you heads up ok. I'll definitley be saying an extra special one for lil Kayleigh today and the days to come.

In Christ,
Rachel

gloryrevealed said...

I'm praying for your family tonight. It's so hard to understand all the ups and downs, but I pray that God would comfort and sustain you through every trial.

Amber said...

Poor baby girl. I will definatly send extra thoughts and prayers your way. I hope she recovers quickly! Get better soon Kayleigh :o)

Babyksmom05@yahoo.com

zzzzzbaby from bbc said...

I put Kayleigh on the prayerlist at our church.

I hope she starts getting better ASAP!

Anonymous said...

When our preemie son was around a week and a half old (so he would have been 25 weeks) there was a day that he was in 100% oxygen all day, on two blood pressure meds and not urinating. The Dr. told us things didn't look good and they thought his body was shutting down. We told them we honor their opinion but would like another Dr. (not one that has seen him before) to take a look. I don't know what they did or who they talked to but they did an xray and found out that the picc line had infiltrated one of his veins and the tpn was filling his lungs. They had to pull the fluid off his lungs and then he was fine. That was a close call. That same week, our daughter was not oxygenating well and we thought we would have to make a decision about her as they had to keep "bagging" her. God was there that night and a respitory tech. came over, made a simple adjustment to her vent and she was fine from them on. God was watching over both of my babies and he still is. Just wanted to let you know our stories in case they could help Kayleigh.

Diana said...

I am praying for you little Kayleigh. Please get better soon!

sheka said...

I am so sorry to hear about Kayleigh's bad day. I wish there was something we could all do. I'm sure you think the same thing. You are in my prayers.

Anonymous said...

This is really disheartening. But be strong for that little baby, she needs all your strength and faith in her.

Has Kayleighs placenta test results come in? How about Aimee's tests? Is Aimee doing ok? Sorry to ask so many questions.

Anonymous said...

Hi Adam,
I have been following your precious daughter's story from Austin, TX. What a miracle you have on your hands! (No one ever said miracles were easy I suppose, lol)
I saw you request for other people's stories. I have one for you. My husband and I are friends with a couple -- Lucy and Rick House. They just recently had a son, Richard Levi House, born 3 months early! He is really struggling and I thought the extra prayers and positive thoughts from other people could help. Please pray for him. Lucy and Rick have been through so much, they have lost children before and I am praying with all my might that it doesn't happen again. Thank you for your time. God bless you and your wonderful family.

Karen Roddy

Here is the link to Levi's page -- http://www.caringbridge.org/cb/viewHome.do

Karen Roddy said...

My husband and I are praying for you! We are sad, but trying to stay positive! This little girl has beaten so much already, she can whip this too!

Karen R
Austin, TX

Anthony's Mommy said...

Aimee & Adam,

(hugs) You guys are sure handling a load right now. I have heard the expression "Preemies are the strongest creatures on earth" And I believe that!

Did you ever find out the results re: the molar pregnancy? I know that is on your mind too!

Kayleigh,

Oh little girl, you are sure making sure that mommy and daddy won't forget how very special you are! You rest up little one and let your body heal. I know you can get through this!

mndac said...

we are keeping kayleigh in our prayers! my brother went through a minor surgery when he was a baby, and took a turn for the worse after it (infection, fever, and in and out of a coma). my mother was there with him 24/7 and nothing was helping. my brother and i made the trip to see him, and within hours after we left he started making improvements and within a day and a half was recovering nicely..... sounds silly but maybe bring her siblings in to see her if possible, it may just give her a little more fight to pull through.

Adam and Aimee Freeman said...

No results have come back from the placenta (Molar Pregnancy). They said it would take up to 3-4 weeks. Aimee is in the clear at the moment because of the false pregnancy test. Depending on what the placenta comes back showing, will depend on how closer we need to monitor Aimee and especially when/if she gets pregnant. We do want to have another child, but not for a year. The results will help us relax tough.

Thanks,

Adam Freeman

Kelly said...

Kayleigh....you sure know how to keep people on a rollar coaster! I'm making sure that I keep you in mind during my daily prayers (and your mommy and daddy too!) I just pray that the Lord keeps His hand upon you, your family, and your hospital team as they figure out how to better help you so you can get home soon!

Love
Kelly

Anonymous said...

Hello to the freeman Family.I had received a forwarded email today about Kayleigh from my niece.I must say my heart goes out to your family as a father of three boys the oldest of 9 yrs of age.I can not imagine my life with out them.As I am sitting here typing this tears are upon my face. I will pray for kayleigh your beautifull liitle girl.I also posted it on a popular security forum I am a member of.It is mainly a computer security forum and very popular from folks all over the world.http://www.wilderssecurity.com My user name is djohn and the thread topic is please! help open your hearts for a baby in need for prayers.God bless you and your family.

Anonymous said...

I've tried to leave a comment a couple of other times but they never showed up. I really hope you know that I'm here with Kayleigh on my mind. Aimee, I really hope you are ok too! And Adam, I can only imagine how tough this is for you. Be strong.

Love,
Rebecca

Amanda Henderson said...

Your story has captivated me because I have a near 6 month old and it's tough to see a new baby fighting for life. She is adorable! Rebecca sent me your site and I'm so glad that she did. Your family will be in our family's prayers. May our Heavenly Father bless your beautiful baby, you, her nurses, doctors and anyone else that is needed for her life. ~Amanda Henderson

Rachel said...

I hope you had a peaceful day Kayleigh and mom and dad of course!! You're in my prayers as always, and Kayleigh, you've made it this far don't stop now:-) Sleep tight little one!!

Rachel

Anonymous said...

Kayliegh, I also am praying for your health day after day and I cannot wait to hear from your mommy and daddy and see how you are feeling today! I hope that you are feeling better and getting stronger!

Crystal

The Hansen's said...

I saw your story on American baby and had t read more! What a lucky girl Kayleigh is to have such a strong Mommy & Daddy! After reading all that your family has been through and to read about your enduring faith, I truly believe that God will pull little Kayleigh through, she has come so far. Your family is I am sure an inspiration to other families facing similar situations!

Many prayers & blessings,

Ashley Hansen

Anonymous said...

Gosh I am so sorry. I'm SURE that she will pull through. She always has and she is determined to make it. So have faith that she will be alright.
Big HUGS!
Lisa in Chicago

Anonymous said...

Hello Guys,
Sorry I haven't commented lately but with the hurricane things have been dicey. I am sorry to hear that today was a bad day but I pray that tomorrow will bring sunshine. She is a fighter and so are you two.

-Beth (Houston)