Kelsey's Kidneys

Yesterday morning, the Kidney doctors came to check on Kelsey's kidneys because she had decreased urine production and her creatinine levels were going up. He told Andy he didn't think thing were looking good for Kelsey's kidneys and that he expected her creatinine levels to go up even more by the next morning. Which would mean her kidneys were now failing. Andy told me the doctors thought her kidneys weren't looking good but he didn't tell me how bad they thought they were or that after they left he was crying over Kelsey thinking this might not get better. Andy just told me to talk to the doctors when I got up there that afternoon.


On the way to the hospital, I was feeling a little down. I usually do a lot of praying and singing with the radio to try and lift my spirits driving back and forth from the hospital. When I turned on the radio the song playing was the song "Praise you in this storm" that has been playing on my blog. Of course that just started the tears and I just wanted to ask God when was this going to end. But by the time I got to the hospital I was convinced that the kidney doctor was just one of those neg/no hope doctors and I wasn't going to think the worst yet. I was trying to hold on or better yet God was trying to give me back the hope I have in Him. I wanted to talk to Kelsey's main doctor (which I love this week...they change every week but we've been there long enough to start repeating them ), but when I got there her main doctor had already left, so I talk to the fellow that has been following Kelsey all month (he's moving up to the 12 floor ICU next month :( so we will have a new NP following Kelsey). He said the kidney doctor was very discouraging but that they had ordered some more test to verify this diagnosis and thought it would be best to wait and see if things got worst. It was a very solemn conversation and when he was talking about the kidney stuff I didn't look at him and just kept my eyes on my little Kelsey girl. Almost as if I didn't look at him, then what he was saying wasn't really true. The only positive thing was that he and the nurse both thought Kelsey was peeing a little more today. They do labs at 4:00am and 4:00pm and all of this was before her 4:00pm labs.


So, around 5:30pm they got her lab results back and her creatinine levels were down. I thought this was good but wasn't sure. Andy showed up a little after that and the fellow came by again. This time the conversation was much more happier. He was very encouraged by this and said even if the level was back up in the morning like the kidney doctor had thought, it wouldn't be as bad. If the levels were going up and down that was a much better diagnosis for the kidneys. Andy and I left and went to dinner after that a little more encouraged than that morning day.


At dinner Andy told me he was a little mad at me earlier because I didn't get that up set when he told me about the kidneys this morning. I told him I did get up set and that I was crying going up to the hospital but that I also had decided I wasn't going to let this doctor get me down and I was tired of this type of gloom and doom doctor that seem to have no hope when they talk to you. Since, everything seemed like it wasn't as bad as it was this morning he was really glad I didn't get as upset as he did. We had a good dinner and it was nice spending some time together.


On the way home another favorite song came on the radio, "What faith Can Do". It's new so I can't find it for my playlist yet but it talks about how faith can see your through impossible situations. Of course the tears flowed again but this time tears of hope. My God is the God of m


This morning, Andy called real early to find out Kelsey's creatinine level again and they went down again!!!!! God answered our prayers yet again. Andy met the kidney doctors again at 8:30am and he (the main one) said he was very surprised but glad and thought there was nothing really wrong with her kidneys. So, he wasn't coming back to check on her unless things change a lot. Although, Kelsey's kidneys are good at the moment, please pray they don't get worst because being on diuretics for a long time can damage the kidneys and she's on a really strong one at the moment because of all the fluid.


Also, since the drains were put in Kelsey hasn't pooped and x-ray showed she had a lot of gas. They gave her something to help and she finally pooped around noon today. She hasn't done another one yet and she really needs to. Her belly is still huge but now they are saying most of it is air and so she needs to stool it out.


I know this is a long update and it's all about pee and poop but don't take peeing and pooping for granted. Yesterday was a real tested our faith and I'm not sure how we did. This roller coaster ride has had a lot of ups and downs lately. I know God loves us and won't give us more than we can handle, I just wish he didn't think we could handle so much. I know God loves Kelsey more than we do and He wants the best for her and us. Our nurse told us today Kelsey heart surgeon came by to check on Kelsey (he does every day) and today all he said was "she going home" and left. And that the hope we are holding on to tonight!!!! That one day soon our baby girl will be home with us again!!!


Pray specifically that 1st Kelsey's belly continues to get smaller and the fluid issues gets a lot better and 2nd that they could really start trying to wean her off the vent. Thanks for reading all this and sorry it's was so long.



Patti

Here's the lyrics to the song "What Faith Can Do" by Kutless and you can watch the video at http://www.youtube.com/watch?v=7elxC8LXfzE

Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
When you don't have a chance
When the world says you can’t
It’ll tell you that you can!

Kelsey Girl YOU CAN!!!!!

Now a Chest Drain is In

Last night they put in a second drain in Kelsey chest. Her afternoon x-ray showed a lot of fluid on her left lung and the belly drain would be able to get that fluid off very well. They don't think this drain will be in long but at this point they aren't really sure of anything with Kelsey. The drain in her belly is a temporary one...they wanted to make sure she didn't have an infection before they put in a more permanent type drain next week. Since they think this fluid issue isn't going away any time soon.

Earlier in the afternoon we got some small hope in that their plan is to try and wean her off the vent as this fluid gets off and send her home with the drain. That idea meant she might come home earlier than we thought she would. But I don't know now how long it's going to take to get enough fluid off so they can start trying to get her off the vent.

Then, today they did a ultrasound to check on her kidneys. Andy and I are thinking just what we need another organ to worry about. So far the kidney are working they said that just wanted to make sure nothing was wrong. They have also started giving her some med to help with her lymphatic system just to see if that will help. They are trying everything they can think of to help Kelsey with this fluid retention/ascites. The problem is there really isn't a smoking gun to point to as the main problem. They say it's still a lot of little things creating a really big problem for Kelsey.

Andy said her face is less puffy but her belly looked bigger this morning. Continue to pray for answers and for Kelsey to improve. The rest of the up family could use your prayers also.

Heading to the hospital to check on this kidney thing.

Patti

The Drain is Back

Kelsey's lung x-ray came back worst so they are putting the abdomen drain back in as I'm writing this. Continue to pray they can get a handle on this ascites/fluid retention.

Patti

Kelsey needs your prayers

Kelsey is getting bigger and bigger and not just in her belly. Her little face (and body) is so puffy it doesn't even look like my sweet baby girl any more. The doctors aren't sure what's causing this or how to fix it. Right now they are still hoping by not putting the drain back, her body will find the balance for dealing with this fluid retention on its own. Again I'm learning so much about how the body functions. As best as I can explain it, your blood vessels are suppose to absorb this fluid and then you pee it out. But, Kelsey is doing the opposite. Her blood vessels are leaking fluid into her body and so it's swelling up. Why is Kelsey doing the opposite???? They aren't really sure but think it's just a lot of little things working together to create this big problem. Little things like a sick liver, an inflammatory state from open heart surgery, poor nutrition from diuretics, damaged cells including her blood vessel, abnormal thyroid and several others I can't remember. Individually they wouldn't cause this much trouble but together they are causing Kelsey a lot of problems with this fluid balance. They still haven't put another drain in because that would only perpetuate the problem. They are holding off hoping this fluid balance will fix itself. If the balance of fluid pressure outside her blood vessels is greater, then hopefully she will start reabsorbing the fluid into her blood vessels and then to the kidneys to be peed out like it should.

Please pray this will work and Kelsey can start doing this on her own!!!! As long as her breathing is fine and her kidneys are fuctioning they will try and wait for Kelsey to balance this out. It just brakes my heart to see her like this. I thought she looked bad yesterday but today it's even worst. I was reminded of a verse I clung to several months ago today in a birthday card from my sweet friend Sue. Romans 15:13 "Now may the God of hope fill you with all joy and peace as you believe in him, so that you may abound in hope by the power of the Holy Spirit." Right now I have to put my hope in God and trust Him to heal my baby girl. Sometimes it easier to say than to do. I just have to getting reading it over and over.

Thanks for your prayers!!!

Patti

Kelsey's Ascites is BACK

Kelsey is driving momma and daddy (and her doctors) crazy!!!! Her lungs are still an issue but she's retaining fluid AGAIN and the doctors aren't sure why. When they started clamping her belly drain this weekend things started moving down hill very quickly with her belly, then face and now body swelling with fluid. They did an ultrasound yesterday to see if her liver was getting worst but the GI doctors ruled out the liver as the main cause and said the ascites this time isn't from her liver (not that the liver isn't completely innocent, it still isn't completely well). So why is there so much fluid???? Good question and the doctors aren't sure. Basically, Kelsey was getting use to the drain and diuretics to keep the balance of fluid retention and when they stopped helping her, her body didn't know how to handle it.

Along with the drama of the growing belly, Kelsey somehow wiggled out her second PICC line Monday. So, today they had to take her back to surgery to put in a Broviac line. Hopefully, this one will last longer!!! And the good thing about this type of IV access is they can draw labs from it and won't have to stick her little heels any more.

Also, this morning they notice on her x-ray her belly drain was coming out a little. To prevent possible leakage that could lead to an infection they had to take her belly drain out, too. Kelsey, Kelsey, Kelsey!!!! PLEASE PRAY that Kelsey will start processing this fluid on her own so they don't have to put in another drain. Meanwhile, Kelsey's lung are requiring a lot of support to keep them open. Her belly pushes up on her diaphragm and lungs. As long as she can still breath ok they don't want to put in the drain so she can have a chance to balance all this out on her own. Please pray she can do this quickly.

Andy and I are on this roller coaster ride and ready to get off!!!! We are so gratefully for all the obstacles that God has helped us with in the past and know in time this too will get better. Every day we have to pray God will help us through one more day and He always does!!! He is faithful and gives us the strength we need. He knows how much we can handle and is with us all the time. These are the things we hold on to during this time, but that doesn't mean there are moments I just want to cry!!! This song that's playing is a good one to listen to when I feel like crying. I know God holds all my tears in his hand and He love me and Kelsey and will see us through. The end of the song they quote Psalm 121 "I lift up my eyes to the hills--where does my help come from? My help comes from the Lord the maker of heaven and earth." I love that Psalm.

Keep praying Kelsey home!!!

Patti

Here's Kelsey last Wednesday, the one day we put clothes on her. It's so hard to put them on her and now I doubt they would fit over her belly. She's a cutie with or without clothes.

This is a pic of one of Kelesy's silent cries that just brake momma and daddy's heart....because of the vent she cries but no sound comes out.

A couple of nurses helped me make this cute page with Kelsey's hands and feet prints the one day we put clothes on her.

Here's a picture of her today, you can see how big her belly is and how much fluid she has on her face and upper body. Please pray this will go away, it's something Kelsey is going to have to figure out and fix on her own.

Pray for Kelsey's Lungs

Kelsey's lungs aren't improving very well and it's been a very frustrating week for all of us. The doctors are trying several different ways to try and wean Kelsey off the vent but each time her lungs get worst if they get the vent too low. They keep telling us this is going to be a slow process but Andy and I had both hoped Kelsey would be getting out of ICU soon and then home. It looks like she's a still a long way from both. Also her belly is getting bigger again. They aren't worried because they have taken her off all her diuretics, increased her feedings and are trying to close off her belly drain. It's going to take her a while to adjust to getting this fluid off herself, but as usual, her big belly isn't helping her lung issue.

At this point, I'm getting very discouraged again. I hate seeing Kelsey just lying in her bed with not much interaction. We can't really hold her or play with her. She hates the vent. tubes and cries every time they stick her little heal for labs. I'm really tired of seing my little girl crying and being helpless to comfort her. At times I feel like this has been one of the hardest weeks, yet. I know God has a plan for Kelsey and his timing is perfect but waiting and trusting is still sometimes a struggle. Continue to pray for both for me and Andy. Pray Kelsey's lungs will start improving faster so she can get off this vent. I think Keeton has picked up on mine and Andy's frustration and he's going through a frustrating period, too. We could all use some prayers of encouragement.

Thanks for continuing to check on Kelsey and the Up Family and for all your prayers.

Patti

Kesley's still on the Vent

Sorry about the lack of a recent update, I was sick over the weekend and didn't get to see Kelsey Friday or Saturday. : ( Kelsey did get her picc line Friday but the surgeon didn't like where that put it so today she had to get it moved. They had talked about taking her off the vent Saturday but her lung x-rays didn't look good and Sunday's x-ray it look even worst almost collapsed again. They have decided they are trying to get her off too fast and that's why her lungs are getting worst. So, now it might be a while before she is off the vent. She was on it for so long that her lungs are very weak. Kelsey's heart is great, now it's her lungs. Her liver counts are still getting lower but it will still a long time for the liver to heal. She still has the belly drain but it's getting less and less fluid every day. Her eyes look better and after she's out of the hospital we will follow up with the eye doctor. So, for now Kelsey just needs her lungs to get stronger and that will just take time. Hopefully, she will start growing during this time now that she not using so many calories to breathe.

Kelsey seems to be happy right now even thou she's on the vent. Yesterday and today she was happily sucking on her pacifier holding on tight to my fingers. They still have to tie down her hand to keep her from ripping out all her wires, but she doesn't seem to fight it any more.

Andy and I are still working on having patience. God's been teaching a lot about patience. We just wish He would hurry up and get this lesson over with. God's timing has always been perfect and we know Kelsey will be home with us soon. So, I'm back to listening to my "While I'm Waiting" song.

Patti

Still Getting Better

Well, Kelsey didn't get her new pic line yesterday, but she did get the other chest drainage tube out. Last night they had to get new IVs and had a hard time hitting a vein. After being poked several times, they finally put one in her head. : ( She only gets her antibiotics and one other med through her IVs the rest are orally. Today they took out her foley catheter (urine), so she's slowing losing everything. She still has the draining tube in her abdomen but its putting out less and less fluid. Tomorrow at 2:oopm Kelsey supposedly going to get her pic line and then hopefully Saturday she can be taken off the ventilator!!!!!! So, Andy and I can finally hold our little baby girl again. Sorry this is such a quick update but it's all I have time for at the moment and I wanted you to know she's still on the mend. I'm looking forward to holding my baby girl Saturday!!!!

Patti

Slow But Good

Kelsey's getting better and better each day, only it's a little slow for momma and daddy. We want to hold our little girl so bad but we have to wait a while longer. She had her pic line and central line removed because they had an infection, also. But since she was already on antibiotics they aren't to worried. So, tomorrow she will have to go get another pic line, hopefully she can keep this one a little longer. They are happy with her progress so momma and daddy are, too. I'm still on a happy high thinking about how well her surgery went and how well she's been doing since. There were so many things that could have happened but didn't and I know it was the hand of God. God truly blessed us and we are so thankful!!!!

Thanks for checking on Kelsey and continue to prayer her home.

Patti

Kelsey Had a Good Day

Well, the weekend wasn't great for Kelsey, her blood pressure kept dropping and they weren't sure why. They tested for an infection Friday but it was negative. They tested again Sunday and it was positive. She has a urinary tract infection and that seemed to be causing her blood pressure to drop. She's on antibiotics and doing much better today. The big praise of the day was they took out one of her draining tubes and her pacemaker. For the first time that I can remember her ALTs and ASTs were normal and her bilirubin was around 2 something. She still has a lot of fluid coming from her abdomen but they aren't real worried,yet. Our little girl is slowly getting better. She still has a long way to go but after a worrisome weekend today was good!!!

Patti

Two steps forward One step back...

That's how it's been today. They've been slowly trying to wean things off Kelsey today because she's been doing so good. Her lungs looked clear thing morning, so they lowered some things but this afternoon her left side looked a little cloudy on the x-ray. So, they said they just need to adjust some things a little. Her blood pressure was doing better so they lowered her pacemaker heart rate and weaned her off some other meds. But it started to go down slightly so they again need to adjust some things. (Ok I know I keep saying some things a lot but that's because I don't know exactly what some things are, sorry). They are still happy with her progress.

We are starting to worry about her eyes now. Because she doesn't close them most of the time and it seems like after the surgery she didn't close them at all, they are worried about her cornea. They had an eye doctor come look at it and it seems like it's scraped a little. We are praying it's not anything permanent but the eye doctor can't really do anything until Kelsey's more stable from the surgery. She's getting some different drops along with the eye gel she used to getting. Please pray that there isn't any permanent damage to her eye and that they can find out why she isn't closing her eyes and can possible find a way to get her eyes to close.

Here's a picture of Kelsey with all her monitors and other machines. She's the tiny little baby in the middle of the room.

Kelsey's Still Doing Well

The next several days will be slow going. I told my daddy, that no news was good news. She's still needs all the support she's getting. They are happy with her process so far, but we are still in a wait and see mode to know just how fast she will get stronger. She was on the ventilator for almost two weeks before the surgery, so she's going to take a little longer to get off of it. She's starting to wake up more and doesn't like being retrained so she's fighting it. She's definitely a little fighter!!!! Because she doesn't close her eye's they covered them up to help her close them and keep them from drying out. They also uncovered her incision to help it heal, so she looked a little worst last night, but she's still our beautiful little girl!!!!!

Here's her latest picture with her favorite blankey.




Patti

Kelsey had a good night

Last night, Kelsey continued to do well. They did give her some more pain meds because she was moving around and it seemed like she was in some pain. That broke my heart a little to think she's in pain. Now we are waiting to see if she can be taken off some of the things that are supporting her. She's still has a pacemaker helping her heart beat a little faster, the ventilator that will help support her lungs for a while, draining tubes from her chest and abdomen and all kinds of meds to support her pain and nutritional needs. I will try and let you know as Kelsey comes off these. Thanks again for all the prayer and support. Everything was so amazing yesterday, but I know Kelsey still has a fight on her hands the next several days.

How Great is Our God!!!!

Patti

What an Amazing Day

Today will be one of those days I will look back to and be reminded of the power of prayer. I will remember how it feels to have peace that passes all understanding and patience that only comes from God. Every time Andy's phone would ring my heart would beat a little faster for a moment and then Andy would smile letting me know everything was going well and I was reminded over and over that my God was watching over our sweet little baby girl.

It was wonderful having several people waiting with us from all over. Thank you for coming Aunt Sandy (from Austin), Aunt Mary and Uncle Al (from Waco) and Aunt Sue and Uncle Lonnie (from West Monroe, LA). Of course Nana, Grandpa and Aunt Lisa were there and several people from Prestonwood and my friend Gina. Haynie, our Sunday school teacher and his sweet wife Paige came to see Kelsey tonight and take us to dinner, thank you. Thanks to everyone who prayed and left messages and comments for us my email, phone and txt. Today was just amazing to see the body of Christ working to lift Kelsey and us up. I'm on a high I'm not sure I will be able to go to bed tonight. Thank you Ms. Jamie and Eric for watching and playing with Keeton. He loved going to Awanas with you.

Everything went exactly like they said it would!!! She's continuing to do well with her recovery. They are watching everything closely and adjusting her meds as she needs tonight. Kelsey still has a long road ahead the next several days and weeks. But she's a little fighter and I know the support she had today will be with her over this period, also. God blessed us with this little girl and today He blessed us again with miracle after miracle. God is Good!!!

Kelsey also got this string of Beads of Courage today. They just started this and I think it's wonderful. Each bead represents something Kelsey has gone through while on this journey. Heart surgery, IV sticks, pic lines, ambulance rides, infection periods, x-rays, echos, her liver biopsy, chemo, doctor visits, etc. She has a lot of beads already and will get more over the next several days. She has earned every bead and probably more over the last 5 months. Here's her Beads of Courage so far.

Warning...I know this might be hard for some to look at but here's how she looked when we saw her after surgery today. Don't scroll down if you don't want to see. She has ton of monitors and tubes on her and of course a cute pink bow. They say every day there will be less and less.

Patti

We just saw sweet baby Kelsey

They just took her back to her room and we got to see her briefly as they pasted by. The anesthesiologist also said everything went well. We will be able to go back to her room in about an hour. So, we are going to grab something to eat. Thanks again to everyone for the prayers, they worked more than you will ever know. To God be the Glory!!!!!

Patti

The doctor's Report

The surgeon came out to update us and said Kelsey did very well!!!!! As soon as they closed the VSD it made a big difference on Kelsey's left lung that kept collapsing. The doctor seemed to think there won't be a lot of permanent damage with her lungs but only time will really tell. The next 8 to 10 hours will be the most telling as to how well this really went. So, keep praying. The surgeon said this was a very big VSD.

Patti

3rd update call

Every time Andy's phone rings my heart beats a little faster. Kelsey is off the lung-heart pump and they said she is still doing well. Andy asked if she is out of the woods with her heart pumping on her own again and they said YES. The doctor should be closing her up soon, so no open chest when she gets back to her room. YES again. In about 30 minutes the doctor will come talk to us and we will get to see Kelsey as they take her back to her room. Then we will have to wait about another hour before they will let us go back to her room.

Everything has been amazingly smooth and we know it's because the power of prayer. God has blessed us with peace and patience during this time. And, I'm so grateful for His presence and all the prayers of my family and friends. They have truly been a gift from God during the last 5 months and especially today!!!

Thank you, thank you, thank you

Patti

2nd update call

We just had our second update call and Kelsey is still doing well. They have done the repairs and are now going to warm her up and start getting her off the lung-heart pump. Pray her lungs will continue to do well. They will be doing another echo to make sure everything is fixed as they take her off. This is the most important time for Kelsey pray this process goes well.

Patti

Our first Update Call

We finally got a call from the OR nurse around 9:30. We were starting to get worried because it was more than an hour but the nurse said that Kelsey was doing very well. They opened her up at 9:23. We are waiting for the next call and will let you know. God is definitely with us we can feel his presence and can tell the many prayers are working.

Patti

So Far Kelsey's on Schedule

We had a sweet time with Kelsey this morning before they took her to surgery. Andy let me hold her and she was looking so good. Her lungs are still looking very cloudy on the x-ray so pray they will do much better after the surgery and when she goes off the lung-heart pump. That's the one of the most important times for Kelsey.

Andy and I are waiting in a special waiting room with family. Waiting patiently for the hourly updates. Right now I just keep reminding myself Kelsey's in God's hands and that's the best place for her always be!!!

Patti

Here's Kelsey's Schedule Tomorrow

Here's the plan for Kelsey's surgery tomorrow (as best as I can tell you).

6:30am Andy and I will go up to the hospital to have some time with Kelsey before she goes to surgery and we might possibly get to hold her.
7:30am They will take her down to get ready-she will get several more IV's, some draining tubes and a lot of other stuff I can't remember
8:30am They will make the first incision do all the things necessary to get her heart ready to be put on the lung-heart pump
9:30am This next hour to hour and half they will be closing the VSD, ASD and PDA
11:00am Then the next hour they will do another echo to make sure they fixed everything that needs to be fixed as they start taking her off the lung-heart pump. As she comes off the pump they want to make sure her heart is working on it's own and checking her lungs for damage and trying to help the lungs work as best as they can.
12:00am They will close her up and bring her back to her room. Sometimes, if they feel the heart would do better if the chest is left open they won't close her right away. This rarely happens but it might with Kelsey.

The first 24 hours is important but the next 8 to 10 hours will be the most critical as her body and heart tries to recover from the surgery.

I'm not sure this is exactly the right stuff happening at the right time but it's close and will give you idea of what's going on. My wonderful bible study class at church has a prayer chain going all day and I wanted them to know how to pray hour by hour. Andy and I will be in the ICU waiting room and they will be updating us every hour. We will try and update you as much as possible. Thanks for all the prayers for this important day in the life of the Up family. Kelsey is in God's hands and there is nothing I can do but trust in Him.

Patti

Kelsey and the UP Family

Happy Birthday Kelsey!!! Kelsey at 5 months old...she has the cutest little face and eyes!!!

Kelsey sleeping with her new blanket and wormy she got from Grandpa Sully for Christmas. At the moment, Kelsey has 12 "wires" attached to her little body monitoring everything and two hand restraints making sure they stay in place. Tomorrow after the surgery she will have even more.

Santa made a special delivery Christmas morning to Kelsey and Keeton at the hospital.

Kelsey with her Santa's little helper hat. (She hates this ventilator in her nose.)

Kelsey before Christmas....because of the virus we had to always wear gloves, gown and mask...here Kelsey is on the si-pap which she hated, too.
Keeton's first time to visit Kelsey in the hospital....because of Christmas the doctors let Keeton come visit his baby sister.
Momma, Keeton and Nana waiting for Santa to come visit Kelsey on Christmas morning. Keeton helped his baby sister open all her presents.

Momma, Daddy and Keeton early Christmas morning.
Kelsey and Daddy in front of a Christmas Tree after one of Kelsey doctor's appointments...this was during the time she was at home.
Keeton's first Snowman on Christmas Day.

The day after Christmas we went to Waco to visit family and Keeton got to go to the ranch with his cousins. He had so much fun "fishing" and "hunting" with his cousins.
Sam, Ben and Jon with their BB guns. Maybe next year (or the next) Keeton will get a BB gun from Santa.

The Surgery is WEDNESDAY

They say Kelsey's surgery will be Wednesday for sure. Don't know if it's the morning one or afternoon one but they are sure it will be Wednesday.

Kelsey is always adding a little drama to the mix. Now, she's got her pic-line wiggled out a little so tomorrow they are going to try and squeeze her in to radiology to fix it. She can't have anything to eat right before so she's going to be a little hungry in the morning.

Patti

NO RSV

The big answered prayer, Kelsey does not have RSV!!!! At the moment they are saying her surgery will be either tomorrow or Wednesday. They are pushing for tomorrow afternoon before anything else comes up. They said all her liver tests are still good and she is doing well at the moment and they want to jump on this opportunity.

Today Kelsey is 5 months old. God has blessed us with this beautiful baby girl that we love more than we ever thought we could. It's been an amazing and challenging journey. God has taught us so much about trusting Him and having faith that He is always in control, especially when it doesn't seem like anyone knows what going on.

HAPPY BIRTHDAY KELSEY GIRL!!!

I will let you know when the surgery will be as soon as I know.

Thanks for the prayers

Patti

At This Point We're Saying No Surgery

They would be doing a lot to get Kelsey ready if she was having surgery in the morning, so we sure it's not happening first thing in the morning. They will be doing a lot of testing in the morning (starting around 3:00am) so pray that gives the doctors lots of answers and direction about Kelsey's next step. Andy and I are praying her surgery will still be this week, the sooner the better for Kelsey's sake. She looked good tonight, no fever and not a lot of congestion. Her belly is getting bigger again, which is very discouraging, but we are very confident God is in control and working out everything for our sweet Kelsey girl.

Patti

This is another song that has meant a lot to me lately.

"Bring the Rain" by Mercy Me

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You

Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times

So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain

So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

Holy, holy, holy
Holy, holy, holy
Is the Lord God Almighty
Is the Lord God Almighty

Still No News about the RSV or Surgery

We STILL don't know any news about the RSV test and we are thinking Kelsey won't have surgery tomorrow morning. We guess there is still a very small chance she might but we don't know. I'm heading up there for a few hours tonight so maybe they will know something. If I find out, I'll let you know. Even if she is negative for RSV we thinking she might just have surgery later in the week.

Also, Kelsey's ascites is coming back. They haven't talk to much about it. Everyone has been more concerned with this RSV, so we don't know what their thoughts are on the ascites. They are only checking liver counts on Mondays and Thursdays and this pasted Thursday they were the best they have ever been. We'll see tomorrow. Most of the test and x-rays they do are around 4:00am in the morning so they will have the results by the time they start rounds. So, some answers about the ascites should be found out very early tomorrow.


Sorry nothing to report yet.

Patti

Pray it's not really RSV or NO Heart Surgery

They were testing Kelsey for viruses again and she came back negative (both the 24 hr and 48 hr tests) the first time but you have to have two negatives in a row to be cleared. When they tested her the second time the first 24 hour test came back negative but the test that takes 48 came back POSITIVE for RSV. They are hoping it's just a contaminant and not really RSV, since the first 24 hour test came back negative. They are testing again so PLEASE PRAY Kelsey is negative or her heart surgery will be postponed again for TWO more weeks at least. Kelsey isn't showing any signs of RSV because she doesn't have a lot of congestion like she used to, and with RSV there is a lot of congestion. Pray it's a false positive or Kelsey (and momma and daddy) is back to a very long two weeks of waiting.

Thanks for all the encouragement!!!

Patti

Heart Surgery Monday Morning!!!

Kelsey is officially on the schedule for Open Heart Surgery first thing Monday morning!!!! We have to be up there at 6:30 am to hold her before she goes to get ready around 7:30. The actual surgery will start around 9:30 and last till around 12:00. All of these times are an estimate but kind of gives you an idea of what will be going on. When Andy told me we had to be up there to hold her at 6:30am, I started crying thinking it could be the last time I hold her. I know that's not thinking positive or having faith but it's the part of me that's scared about Kelsey having open heart surgery. I know they have come a long way with heart surgery like this but Kelsey's surgery is not typical. She has lots of other issues besides her heart that will make this very complicated, and the surgeon reminded us all about them. They really don't know how her liver will respond to this surgery, being on the the heart-lung pump and how well it will do in the recovery process. I will give you more details and what to specifically pray for as soon as I know more. Monday will be a big day for the Up Family.

I love listening to Christian music and during the last several months it has been a huge encouragement for me. At the moment one of my favorite songs is "What Faith Can Do" by Kutless. The whole song is full of encouragement for me, here's what the chorus says: "I've seen dreams that move the mountains, hope that doesn't ever end, even when the sky is falling. I've seen miracles just happen, silent prayers get answered, broken hearts become bran new. That's what faith can do." I know my God is a God of miracles every time I look at my little baby girl. She has come a long way in 5 months (Monday is her 5 month birthday) and she's a fighter (just ask the nurses). Every time that ugly old scary feeling that Kelsey could died during or after surgery rears it's ugly head I just need to think of all the things God has helped us over come so far and know He is and will always be with Kelsey and me. I know this in my head, my heart just needs to be remind every now and then (and sometimes, it's the other way around).

Thanks for all the prayers

Patti