7/14/08 - Happy 3 Weeks Old

Okay, I am going to give you all the bad news quickly and then tell you some good news because we are going to stay positive and not let the bad news effect our attitudes. Sorry I didn't take a picture today because I wanted Kayleigh to rest and I was beyond terrified to turn on her light or use the camera flash for my pleasure.

When Aimee and I arrived to the NICU today, the nurse practitioner came in to talk with us. She had went over everything we already knew (which I posted yesterday) and then a couple other pieces of information. She said that Kayleigh's heart appears to be a little more enlarged today that it did yesterday. Beyond her lungs starting to fill up with fluid, her right lung has some sacs that are not expanding, which she explained could be collapsing from working too hard when fatigued. The NP said, both the lung and heart issues could be signs of congestive heart failure. That is not good!!! Along with other bad news, they are doing blood cultures because they think she may have an infection of some sort. That means they can not feed her until that comes back clear because it could cause the infection to worsen. So no food = no growth.

Now the good news! They have started the medicine to help with her heart, so we will know if it is working within 24-48 hours. They have also started the medicine to remove the fluid from her lungs. So lets pray that both medicines will help take care of these issues. The other day, her weight was 550 grams and it jumped to 635 grams yesterday, which seemed a little weird, but they did give her a blood transfusion. Today her weight was 580 grams which is still up from the other day, so we are moving in the right direction. 580 grams is 1 pound 4.5 ounces. Kayleigh had only three desat episode all day today and it was during her cares. I know she is on the vent and that helps keep the desats from happening quite as much, but I am so happy to hear she was able to rest her body today. Earlier today, the nurse had told us her oxygen was increased to 50% due to her blood gasses coming back irregular, but since then they have decreased it down to 38%. Hopefully that continues to decrease because her settings have normally been around room air (21%) the whole time. They also changed her vent settings from 18 to 15, which I think means it is the pressure forcing air into her lungs. All I do know is that she said it was good, so if it is good then I am happy! ha-ha. For the most part, she seems to be doing better since early this morning. That to me sounds like improvement.

On another good note, Aimee has finally covered the bottom of her container with the milk she has produced. That was a goal ever since she got her first drop to make it into the bottle. We know that Kayleigh needs mommy's milk more than anything, so we are so happy to see that she is producing enough to help. It seems like more and more is coming in each day. Bless her sore boobies though, she has been pumping every 2-3 hours on the dot all the way through the night. She is such an awesome Mommy!!!

Our prayer request:

I asked the NP today if this was a common situation amongst preemies and this was her answer, "Yes, it is with a (normal size) preemies, but it is even tougher on (micro) preemies like Kayleigh because they are just so small" Size is against us and if we can't feed her, she isn't going to grow. So please pray that she will not have anything come between her and her food anymore, so she can grow and grow quick. Right now, we are dealing with a balancing act of events. Although, if she doesn't grow quick enough, we could very well lose her. We are not going to let that happen!!! We all need to pray and pray the same thing, so God will work in her life. Kayleigh is a fighter and we all know that from her past hurdles, but we need her to fight now more than ever before. Ask God to give her enough strength to make it through yet another battle.

Thank you all so much!

The Freemans


Anonymous said...

I am so sorry this is happening!! :*( Kayleigh I pray God gives you the strength to fight this battle and Health!! Adam and Aimee I also pray for you both for God to give you both strength to stay strong!! Many Many people are praying for sweet Kayleigh!!

They also stoped the feeds for my Ryan at a time. He had five different medications going into his little body! When I turned to God and had faith that he would take care of my sons life. Little by little the medications came off!

I don't know what kind of Religion your family is in but I also had my Ryan be prayed over by a priest and blessed. I didn't baptize him because I told my family he would get out and have a beautiful baptizim!! He sure did!

Grow Sweet Kayleigh grow!! You all are in my prayers!!

Mommy to 2 boys
1 who was a 31 weeker

Kimberly (Anthony's Mom) said...

I will be saying a prayer again tonight for little Kayleigh. She is such a fighter and I know she loves giving you guys gray hairs. Please keep me updated.


Sam said...

What about IV lipids? David recieved those when he was little - he was constantly getting NEC symptoms when he was in there and unable to get fed, so they gave him IV lipids. Maybe something to ask about?

Anyways... thank you for updating us even though I know you're having a rough time. I hope that she continues to do well on the vent, and hopefully the blood culture will come out negative so they can begin feeding her very very soon.

Chase said...

God Bless you Baby Kayleigh, we have added a whole team of supporters for you and have been getting word of prayers being sent for you from all across NY today. We have the most practiced prayer senders around and they will be sending them night and day. We wish strength and growth for you. You are extremely loved and we know you feel it each time Mommy and Daddy come into the room. Don't give them such a hard time. Get lots of rest and grow, grow, grow! Now stop being difficult and play nice...

Bless you and your Mommy and Daddy....

Anonymous said...

Poor little baby girl, I will definatly say extra prayers for her tonight. I hope there are no infections so they can start feeding her again. Stay strong baby girl! xoxox


Living With CES After Failed Tarlov Surgery said...

WE are praying big time for you guys :) shes a little fighter dont forget that, shes a tough little cookie :) She has already shown them how strong she is and she will continue to do so.

There is also a prayer community where you can put in a prayer request and it reaches thousands of poeple every day. it is http://asherandjacobsfriends.com/ ,

You can put a prayer request there and everyone will send extra prayers to your little one. When Ava was in the nicu, I had them prayer for her and I really believe it worked :)The site was started by a preemie mom of twins.

Again praying big time for growth, feeding and no desats.


Anonymous said...

I pray every day for Kayleigh, but I'll say extra prayers today.

Thank you for keeping us updated on how she is.

Lisa said...

I have been following Kayleighs story for months now. I have never posted before but I cant help myself now. I think about your little girl all the time and have been pulling for her since the first time I ran across her story. Please stay strong Kayleigh-- we all know you are a fighter! I am keeping your entire family in my prayers.


Unknown said...

I'm sorry that lil Kayleigh is having a rough go at it right now. This sounds all too familiar. I know the pain you feel for you daughters well being. But just keep your head up and your faith strong.

"Father I come to you again thanking you for the life you have given little Kayleigh. We don't know what your plan is but we DO know that you plan is in the works. Father I thank you for the family you have given her and the care providers you have laid among her. I pray that you rid her of any and all infections or bad bacteria that may be in her body interfearing with her health and growth. I ask that she is soon able to start her feeds again. Father make her comfortable as you releive the extra fluids from her body and heal her heart and lungs. Father give her the strength as you have been giving her to fight the fight for life. Give her the peace in knowing you are there with her. Strengthen and comfort her family and they press through yet more stressful days. Give them the peace of mind in knowing that you are in control and that your Will, will be done. Lead them and guide them in all that they do. Continue to keep your hands on her medical care team and give them the strength and knowledge to diagonis and treat this little girl. We love you Fatjer and thank you for all that you have done, all that you are doing and all that will be done. For it's in Christ name, Amen."

In Christ,

Jennifer in NM said...

I am saddened to hear the news. The good thing is that there is still positive coming out of all of it. It seems that if she is going to be able to rest deeply, that she has a good chance of starting a road to recovery and weight gain.

**Kayleigh, may God allow you to rest and grow. May the desats end and the fluid leave your body and allow normal function to return. May you gain weight quickly so you can have your first surgery and begin a new journey.**

**Adam and Aimee, may God give you the most needed strength during the difficult time.**

You guys are a family of fighters and I pray to the end of the Earth that Kayleigh pulls through all of this ok. I still come everyday to check on her and was shocked at the recent posting. But again 1 step forward 2 steps back. This is just a mountain you have to climb, after this hopefully it all goes smoothly.


Anonymous said...

I just wanted to give you a piece of encouragment. . . I thought of you guys today when I had a new client and was doing her haircut, she told me about her grandson who was born at 23 weeks in february this year. He is now home alive and well a complete miracle!!!! Still praying for Kayleigh, stay strong!

Jennifer said...

hang in there kayleigh and family!
there is a chance there is no infection right? didn't that happen last time? i second asking about the lipids. my son still gained weight on it.
thanks for keeping us posted. stay strong.
jennifer (mom to 30wkr)