8/10/08 - NEED YOUR PRAYERS!!!

Everyone who has been following our story knows there are some good days and there are some bad. While this whole past week and a half have been going good, things took a really rough turn tonight. We just got off the phone with the NICU nurse and nurse practitioner, and it seems that Kayleigh's belly was getting pretty large and it is either air from the cannula or from her formula feeds. So that threw up a red flag to get some tests done quickly.

They did an x-ray and that came back showing signs of the intestines being "loopy" which is not normal and not what they want to see. She mentioned that being loopy is where Kayleigh's bowels are dilated on the x-ray. They decided to stop her feeds and put her on antibiotics incase it is an infection of some sort. Since they have to give her antibiotics, they had to put in an IV back in. The tests should come back within 48 hours, so they want to start the antibiotics to get a jump start on the problem, IF there is one. They are doing a urinary culture which has not come back yet, but the blood culture has. It shows that her hemoglobin is low so they are going to give her a blood transfusion tonight. It also shows that her white blood cell count is normal so she is not showing any signs of fighting off an infection, yet. There is more information that will come back from the CBC (blood culture), but it has not yet.

Kayleigh is not desatting and is not having and Bradys, which is kind of like a desat, but her heart rate just drops instead of her oxygen. She had two of those today when the eye doctor was performing his exam, but that is nothing to be worried about.

Right now, our biggest fear with the stomach is NEC, which is Necrotizing Enterocolitis. It is death of the tissue in the small intestines which is a scary scenario for a preemie. She did has a small stool tonight which means things are passing through, but we need to pray hard that it is not NEC that is occurring. The nurse practitioner said that the x-ray would show signs of air bubbles in her abdomen that has leaked out from her intestines if it were NEC, but it hasn't shown any signs of that.

Her first guess right now would be that her digestive tract has shut down (Ilius I think is what she called it) for some unknown reason. It could be from a urinary tract infection (which she just got over) or some other infection. Since Kayleigh just went on full feeds with formula only, her body could not be responding well to that. While they are testing for what could be wrong, they are stopping her feeds and if she returns back to normal quickly, we will know it was due to the formula and we will have to change the type of formula we are giving her.

So right now we need everyone to pray that this issue will be quickly resolved and we can get back on track. Thank you everyone for your support and reaching out to God with us when our little girl is in trouble. She has fought through so much and she will fight through this too. We all just need to support her and pull for her 24/7. Thank you all very much for everything.

They did measure Kayleigh and she is 33 centimeters which is right about 13 inches long now and her head measured at 25 centimeters, which is 9.8 inches around. They did not weigh her tonight, because they got side tracked with all these other issues.

On a lighter note, Allyson and Brandon are back from their week long vacation where they went up to Ohio at the Pymatuning State Park for a family reunion my family does every other year. You can read about their trip on their blog by clicking on their names. They were so excited to tell everyone about how much fun they had.

Last, but certainly not least! Aimee and I joined a new church not too long ago called Elevation and it is an amazing church. We heard about Elevation through Wade and Ferris Joye, our NICU buddies. Aimee and I learned that getting baptized was not only washing away your sins, but confessing to the world your profound love for the Lord. Since you all were not there to witness it, I would like to share with everyone that Aimee and I were baptized today. To top it off, Wade Joye not only had the opportunity to baptize many people for the first time, but he baptized Aimee and I. It couldn't have been anymore perfect than that. God is GREAT!!!

The Freemans :)


Anonymous said...

Still out here, and our family praying every day for "our" miracle girl...hang in there, Love the Johnson's in CT

annaandallysmom said...

I am holding Kayleigh in my prayers and pray for a quick recovery. I am so happy for you and Aimee getting baptized. My husband and I were baptized together almost ten years ago. Isn't it wonderful that you can go into the water one person and come out washed and pure as snow. He is an amazing God.

God Bless,

Unknown said...

I'm sorry to hear Kayleigh is having a rough time right now. I'll definatley keep her and her tummy issuse in my prayers throughout the day and days to come. And I'll continue to pray for added strength for you and Ammie as you pass through this portion of Kayleighs NICU stay.

And God bless you two for getting baptized. What a wonderful day and experience!!

Keep strong this is just yet another hill to climb. You'll start the downward slope again soon.


Anonymous said...

God Bless you Sweet Kayleigh on a speedy, healthy, recovery!!! You are a fighter Kayleigh and I know you will fight this battle also!!

My Ryan also gave me a scare with the whole NEC thing! Thank God it turned out that it wasn't! Continue to have faith in God! God is good! I am so happy you and Aimee found a church!! God Bless You All!! Take Care and Stay strong!!

mommy to 2 boys
1 who was a 31 weeker!

Kimberly (Anthony's Mom) said...

I'm so sorry about this set back. Kayleigh's been doing so well. I pray its not NEC! Their tummies are so sensative. I know Anthony's was and they had to switch formula a few times cause they were giving him gas, which was resulting in desats/bradys. You all are in my thoughts and prayers


Anonymous said...

Praying hard for you guys... I know how scary this must all seem. I will never forget the morning the NICU called me at 7am to tell us about Parker and the fact they thought he had an infection in his bowels and that he had had like 20 some destats and bradys through the night.

I am praying it isn't NEC...I have seen first hand how scary that is...our nicu friend's son had it. I will say that Parker had a blood transfusion, because like his mommy, he was anemic...and he had to be put on antibiotics after the issues I mentioned above.

If you need to vent or have any questions...you email me!

I am so glad to hear you got baptized. Our friends Matt and Amanda Uher go to that church. They just moved back to that area about the time Parker was born..we met them in life group and miss them terribly. Pray for us, we are in a period of transition and praying about where God is leading us...

Hang in there guys...I know Kayleigh will pull through and be fine

Anonymous said...

I am keeping Kayleigh and you guys in my thoughts and prayers. I have a baby girl who is four months old and you two are so very strong. I can not imagine what you are going through and I know God is watching over all of you and he will help Kayleigh pull through this. I hope she continues to grow and gets to come home soon.

Anonymous said...

My family will be praying for Kayleigh too! My 3 year old son has been praying for your daughter and loves to look at your blog.

I've read that NEC is more common among formula fed premies than breastfeed babies. I wonder if going back to breastmilk might help?

I'm glad to hear that you were baptized too!

Anonymous said...

I will definatly be praying extra extra hard for Kayleigh tonight. She will get through this, she is a fighter!


Anonymous said...

Congradulations on you and Aimee being baptized, God is so amazing. We also attend Elevation-Butler campus for about 2yrs now, God has his hand on this church in so many ways. We're praying for your whole family, and maybe one day we will cross paths at Elevation. God Bless.