Liver Results

Still trying to understand everything the GI doctors are telling us but as usual, Kelsey's results aren't bad but not wonderful either. The BIG praise is that her liver is not worst and not in a condition to prevent her from having heart surgery. The doctors have discussed the cath lab option and decided Kelsey didn't need to have that done before her surgery so we are not doing that tomorrow. Praise that's one less thing Kelsey has to go through. So, what's next for Kelsey...open heart surgery. Probably the beginning of next week, we don't have a date or time yet. As exciting as it is that it's finally going to happen, I'm nervous also because it is open heart surgery. I'm trusting God with my little baby girl because He's the one in control, now. My heart and her heart are in His hands. Pray for all of us as we prepare for this next step.

I'll try to explain the liver biopsy...it showed there was still some fibrosis but not a lot of cirrhosis. If I understand it right, her liver is showing signs of damage but not a lot of permanent damage. Her liver function numbers are still moving in the right direction but are still not in the normal range. Bascially, she has a sick liver but it seems like it's trying to heal itself but still has a long way to go. Please continue to pray for complete healing for Kelsey's liver.

Right now, I just miss holding my little girl. Since she's been on this ventilator, we can't hold her. Andy and I are both frustrated we can't hold her and feel like all she's doing at the moment is laying up there in a lonely hospital room slightly sedated. We are trying to have patience but just want all this over and our little girl better and at home with us, again.

Thanks again for all your prayers

Patti

STILL No News

Believe it or not we are still waiting for the results from the liver biopsy. They are feeling good enough about it to try and schedule Kelsey for a cath-lab to test her lung pressures before heart surgery. Probably Thursday. We're still not sure it's necessary but think they want to have it done anyway. There's a very, very, very small chance they can do a procedure during the cath-lab to close the hole but they really don't think her situation will work for this type of procedure. If all goes well with the cath-lab her heart surgery could finally be next week!!!!

They tried to take her off the ventilator and she didn't do so well. In fact, it looked like her lung was collapsing again, so, she's back on the ventilator. I guess she will stay on it until her surgery, so I hope it's soon!!!! We hate it because we can't hold her. They tested for the virus again and she was neg but she needs two negatives in a row before they will let us go in the room without mask/gown/gloves. So, they will test again tomorrow.

We're back to this waiting game with Kelsey. Please pray for patience for momma and daddy, pray Kelsey will tolerate the ventilator until we know more about what's next for her and pray for the doctors to make the best decisions concerning Kelsey.

Thanks again for reading Kelsey's update and for all the prayers.

Patti

Quick Update on Liver Biopsy

Andy went up there this morning and waited but no one came to get Kelsey for the biopsy. They finally called and said an emergency came up and Kelsey got bumped. So, we waited and waited and it wasn't until 4:00pm that they started to come for her. She did fine and was settled back in her room when we left to go to Andy's sister, Lisa's house, for Christmas Eve Dinner around 6:15pm. With the snowy/icy roads it took us a while but we finally made it for a wonderful Christmas with Andy's family and my mom.

Thanks for all your prayers, now we have to wait for the results...who knows when that will be with Christmas.

Merry Christmas!!!

Patti

Liver Biopsy Tomorrow

Kelsey's liver biopsy is finally scheduled for tomorrow at 9:00am. They're getting her ready today with a blood transfusion and another IV which she is not happy about. Also, she let them have a little drama last night by wiggling out of her si-pap head gear and then proceeded to get extremely upset about it. So much so, they had to give her something to calm her down because they couldn't get her SAT's up. She is so ready to be done with hospitals just like momma, daddy and big brother. They are also looking to possibly do the heart surgery Jan 7th, depending on the liver biopsy results. We know this is a big guess at a date but at lest for the first time they have even hinted at a possible date. So, we're very excited and nervous at the same time. This is a major surgery and she's a very delicate little girl. We have been and will continue to depend on our Lord Jesus for her healing. We are looking forward to celebrating the birth of Jesus this Christmas, but just wish sweet Kelsey was home and not in some hospital. Not what we had expected for her first Christmas, but we are grateful she's alive and know she's a little fighter.

Pray for tomorrow's biopsy,

Patti

Kelsey's Fever is Back

Kelsey's fever is back and they are hoping it goes away so they won't have to postpone the liver biopsy scheduled for Wednesday. Because they have had her on antibiotics they don't think it's another infection but are testing just in case. Her liver counts are still looking better and some protein that her liver produces is finally in the normal range for the first time in a long time. I asked the GI doctor doesn't this mean her liver is getting better finally and I couldn't get him to say yes for sure. He still wants to wait until the biopsy before he says for sure but he did say he was optimistic that it would show it was indeed better or the same. I think for the first time in a while, some of the doctors that think Kelsey's liver would never get better are starting to change their mind but won't admit it until the biopsy comes back and says for sure. This is a HUGE PRAISE to us but we still need the biopsy results to be sure.

Meanwhile, Kelsey's heart is causing all kinds of damage to other parts of her little body. Until the lung collapse, her lungs had been doing ok but now her lungs are showing signs of lung damage and they are not sure how much. Also, because of all the diuretics she's been on for so longs she has osteopenia which means she's losing calcium in her bones. They've discovered she has 3 or more broken ribs on her right side. They look like they are already healing so they really aren't sure when it happened or how. This is temporary and they started giving her calcium to help. Her white blood counts are up today which probably has to do with the fever and her cold. Please pray this goes away so they can do the liver biopsy. With Christmas coming at the end of the week, we probably wouldn't get any results from the biopsy until next Monday anyway but Kelsey really needs to have this heart surgery before any more permanent damage is done to her lungs. I hope all this is making sense and hopefully lets you know how to pray specifically for Kelsey. We are seeing signs of answered prayers all over the place. We had hoped they would take her off si-pap today but no luck, yet.

Keep checking on and praying for sweet baby Kelsey.

Patti

Latest Hospital Update

Kelsey's finally feeling better from this virus and collapsed lung. Her congestion/cough is better and her work of breathing is better even thou the SI-PAP is helping her with the breathing. Hopefully in the next couple of days she will be off the si-pap, so they can get the feeding tube out of her mouth and back in her nose. Kelsey hates the si-pap head gear and nose gear. Kelsey's also turned into a little drama queen this hospital stay. The first night she pulled out her IV and several nights ago she pulled out her feeding tube. They've had to restrain her a little to make sure she doesn't do a repeat. She's discovering she doesn't like certain things and she's not afraid to let you know.

She had some fever on and off the last several days but she seems to be over that, too. Her liver counts today looked good BUT during rounds this morning some of the surgical doctors were talking again about how they thing Kelsey's liver is not going to get better. They are under the belief that the counts are dropping because the liver is shutting down and that the liver is NOT going to getting better. We had a NICU doctor tells us months ago that the liver counts would go up and then come down and that them coming down would mean the liver is getting better or the liver is getting worst. SO, Kelsey is having a liver biopsy this week to find out if her liver is better or worst. PLEASE PRAY it's getting better. We feel confident that it's better and our hope is in the hands of our Great Physician. Big praise because this time the liver biopsy is going to be with the ultrasound and needle instead of the open surgical one like last time. We will let you know what day the biopsy will be as soon as we know. They are also going to be putting in a pic line because her little heals are all scabbed up from all the heal sticks to get blood for all this testing.

Another big praise, the doctors are going to let Keeton visit Kelsey in the hospital this week because of Christmas. Keeton's very excited and glad he can see his baby sister in the hospital. He saw her Friday night and was so happy.

As always, thanks for reading Kelsey's updates and for all your prayers,

Patti

Kelsey has the Rhinovirus (aka common cold)

They put Kelsey on a 10 day antibiotics because she tested positive for the Rhino virus. Although that's the common cold, for her with her heart condition it's very surious. They are still working on getting her left lung opened and she seems to be feeling better. She's very hungry because they've had her on IV fluids with no food since she was admitted. They are starting to feed her slowly but they are worried about giving her fluids with her lung collapsed. Right now they are planning to do a liver biopsy next week if Kelsey continues to get better. And then hopefully, we can start discussing heart surgery after that. It looks like Kelsey will be in the hospital for Christmas.

Keep praying for her to get over this virus and that her lung will open up, that the liver biopsy will go well and from those results, the heart surgeon will be willing to schedule the heart surgery. Praise her thyroid level is normal at the moment.

Thanks for checking on Kelsey!!!!

Patti

Latest Update

From an ultrasound it looks like Kelsey has a collapsed left lung. Not sure what that means at the moment but pray that the doctors will make some good decisions and let us know soon what's going to be happening next with Kelsey.

Patti

Kelsey's in the Hospital Again

Since Friday, Kelsey's breathing and congestion just kept getting worst and worst. Sunday we couldn't keep up oxygen SAT's up so we took her to the hospital, again. She started out on the 8 floor (Cardio floor). When we first got to her room we had a couple of nurse and a doctor and a student doctor and within 20 mins Kelsey had a room full of people checking on her. They had a hard time getting her SAT's up also. The suctioning wasn't working and they tried to do the deep suction and something was blocking that also. They did an x-ray and her left lung was full of something, her heart was now looking enlarged and they checked her blood gases and they were very high. So, Kelsey was moved to the Cardiac ICU on the 3rd floor. They tested her to see if she has any type of infection becuase her white blood count was high and to see if she might have pneumonia. They put her on CPAP first to see if they would help her breathing and get her gases down but thought they might have to put her on a ventilator.

Big praise this morning the CPAP worked so she didn't have to be put on the ventilator but they haven't let us know what they are going to do next. Andy's been waiting all morning up there do see what they are going to do. He did hear the heart surgerical team when they were doing rounds, say this would be a very compliated heart surgery. They wanted to try and do a liver biopsy this week, so we're waiting to see if they still want to to that. And if so, if they can do it subcutaneously or do they have to do the surgical biopsy. Please pray for wisdom for us and Kelsey's doctors.

This is all I have time for thanks for your prayers for Kelsey and us.

Patti

Kelsey's Results are In

Well, as usual, Kelsey's results weren't good but not bad. Most of the results were the same but the bilirubin was 2 points lower, the biggest drop in a long time : ) We haven't talked to the doctor since the results but he said that was what he was looking at the bilirubin the most to see if the liver was getting better. So, Andy and I are thinking this was great news and a big answer to prayer. We were hoping for more results to be better but we will take what we can get. Tomorrow morning at 8:00, Kelsey is getting an ultrasound (to check on how much fluid is still around and look at the liver again) and then all of her doctors are going to meet and talk about Kelsey's options. Then we will meet with them and talk about a plan for Kelsey. We are praying the ped cardio and GI doc can convince the heart surgeon that Kelsey's liver is and will get better and Kelsey should be scheduled for heart surgery soon. Another option they might look at is doing another liver biopsy. If they do we are praying they can use an ultrasound and not have to do an open surgery again. This would postpone the heart surgery again.

I'm still praying Romans 15:13 and holding on to Hope for my little baby girl.

Keep praying!!

Patti

No News, Yet

Well, we won't know any results until tomorrow. Kelsey's also going to have a sonogram to see how much fluid is still around. Then, all the doctors will talk about a plan based on the results. Please pray for great results so the heart surgery will be possible. They're talking about doing another liver biopsy, also. Kelsey really, really , really needs the heart surgery but the surgeon doesn't want to do it with her liver doing so bad and at this point she really believes Kelsey's liver is not going to get better. So, if something good doesn't happen soon with the liver the alternative is she won't make it. Needless to say, I'm struggling with staying positive with waiting for possible good news from tomorrow's tests results and with the idea that between Kelsey's liver and heart she's not going to make it. I know God is able to heal Kelsey and praying He will. It's been a roller coaster ride for me today. There has always been the possibility that Kelsey won't recover from the liver failing and it's getting closer and closer to that possibility. I'm just trying to enjoy this time with her and not think about that possibility but it's hard. I know you are all praying and I can feel the Lord giving me peace, hope and strength. A friend gave me this verse yesterday and I'm praying it for me and Kelsey 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."

Patti

Kelsey's Home Again

Daddy, Momma and Keeton are all excited to have baby Kelsey back at home. She's still very congested but doing well. We're praying this congestion will eventually get better and not be a on going problem with Kelsey. We don't have to go to any doctors again until Tuesday, so Kelsey's liver has time to get better and we are praying for wonderful news on Tuesday!!!

Keep praying for healing for our sweet baby girl!!!

Love,

Patti

The UP Family Thanksgiving 2009

Kelsey hanging out at Aunt Lisa's on Thanksgiving Day.

Kelsey's getting some fresh air with daddy and Keeton, before all this cold December weather.

Kelsey and Daddy doing a little work in his office. Daddy's already trying to get her to use a phone.

Kelsey thinks momma is enjoying this bow thing a little too much. Kelsey's belly is still a little big but she can finally wear some of her cute little outfits she got as gifts. Thanks Piper : )

Keeton and Kelsey are already playing well together. Keeton has a big plane and he wanted Kelsey to have a little plane.

Keeton and Kelsey playing together again. Keeton loves his baby sister!!!!

Keeton and Daddy doing a new trick off their new ramp.

One more night in the hospital

Kelsey's staying one more night in the hospital just to make sure she doesn't have anything. So, hopefully she will be back home tomorrow. She still has a lot of congestion and could really use your prayers she can get over this soon for her sake and momma's.

Patti

Kelsey's in the Hospital Again

Well, the congestion just got to bad not to do something...So, Kelsey's back in the hospital, hopefully just overnight or a couple of nights. They are testing for everything just to make sure she doesn't have anything more than just a cold. She doesn't have a fever but with the heart condition it's best to make sure she doesn't have anything bad. When we left her tonight she was resting well and seems to already be doing better.

On a good note, they retested her liver and most of the results were down a little. Big praise!!! Let's hope and pray next Tuesday they are down a lot!!!!

Last night I didn't get any sleep with her up all night crying because she couldn't breath through her nose and she started coughing, so tonight I'm praying for a good night sleep!!!

Hopefully Kelsey will be home tomorrow or the next day!!!

Patti

Test Results

Well, the results were not what we had hoped for but not bad either. This journey has been full of moments like this where the news wasn't bad but it's not good either. Kelsey's liver is still not working right but it's not getting worst either. Her ALT's and AST's went up a little but her bilirubin went down and the doctor was encouraged by that. BUT, all this up/down isn't telling us anything because it's not a trend up or trend down. So basically, we are still waiting for this liver thing to do something and therefore, everything is still the same for Kelsey. Her liver needs to heal it's self, so she can have her heart surgery, so she can start growing and have the energy to feed herself and get off the oxygen, and on top of all this her little nose is still congested. In addition to all this her thyroid has not got completely back to normal yet. So, Kelsey gets to get another specialist doctor to help us determine the right amount of med to normalize her thyroid. We will met with this doctor next week and her liver will be tested again next Tuesday. So, back to waiting.....

I'm grateful for God giving me patience and strength to keep hoping in HIM to heal our little girl. I KNOW He will and I'm waiting for His timing. Meanwhile, I'm finally getting a routine down so I feel like I'm enjoying my little baby at home. It's wonderful having her here and having my family altogether.

Thanks for your continued prayers and support.

Patti

Kelsey's Coming Home Pics

Here's Kelsey in her sweet going home outfit. Don't you just want to scoop her up and hold her close.

Ok, we had a hard time keeping the hat on so we switched to the bow.

Momma and Daddy saying good bye to the hospital, we're taking baby Kelsey home!!!

Momma carrying Kelsey to the car with Kelsey's oxygen in tow.

Kelsey looks so small in the big car seat.
Kelsey was a little nervous about daddy's driving. Her first two rides in the ambulance were much slower and less bumpy.

Daddy's happy to have Kelsey home!!!!

Keeton was very happy to have his little sister home. He kept saying, "I like her momma."
Daddy and Keeton can't leave baby Kelsey's side.

Kelsey all tucked in and sleeping soundly....with all her med equipment.
Some sweet friends from our Gateway class put some welcome home signs up for Kelsey. (Thanks Paige and Heather). And some other friends put some finished thing in Kelsey's room, her room pics are coming soon. (Thanks Teresa and Shelly)

Ok, I'm cheating

Sorry, I haven't posted anything in several days, ok a week. So, I'm going back and posting several days this past week. I'm going to do the writing part first and then add pics. So, check back posts to make sure you didn't miss anything.

Thanks for checking and hopefully now that I have a rountine down with Kelsey, I can find more time to blog.

Patti

Giving Thanks!!!

Today, we are thankful for so many things but the most wonderful is having our sweet baby Kelsey home for Thanksgiving. A couple of weeks ago we would have never imaged that she would be home with us on this of all holidays. God answered our prayers and we have never been more grateful to our heavenly father.

We spent most of the afternoon at Aunt Lisa's house with family and had a wonderful meal (thanks Aunt Lisa for the yummy food). Kelsey hung out in the corner or the living room with Grandpa keeping a close eye on the game, oh wait, I mean on Kelsey.

Kelsey and I are doing great with the feeding pump and oxygen, her only problem now is her nose is so congested that it's making it even harder to breath than usuall. It seems like there is always something making everything else so difficult. The whole time she's been home this has been a major problem and we can't seem to make it better. I know I'm not suppose to suction her nose very much because that makes it worst but when she's crying because it's all stopped up I can't help it. Pray this clears up soon and that I can have patience not to suction so it can heal on it's own.

Hope your Thanksgiving was wonderful, too!!!!

Patti

Test Results are In

Well, we called and talked to the nurse about the results and they were good and bad. Her ALT's and AST's were down HUGE praise but her alkaline phosphate and bilirubin were up. All of her blood counts were going back to normal from the chemo. We were encouraged that some were down but we didn't get a chance to talk to the doctor to ask about the ones that were up because of the holidays and the nurse really didn't know what to say about them. The next big day for Kelsey will be Monday when they do the test again and we will be meeting with the GI doc, who can explain everything. We're praying for some more great news.

Even last night Andy and I both thought Kelsey was looking less jaundice and her eyes were looking less yellow. We think if Kelsey was tested today her bilirubin would be lower, also. We are still battling the nose congestion and are hopelessly losing. Please, pray it will stop soon.

We're hopeful with some of the test going down and pray God will continue to heal Kelsey. I'm starting to see a light at the end of the tunnel with this liver situation. Then it's on to the heart surgery but that will wait for a little while.

I thought the first couple of weeks with Keeton at home was the hardest thing I've ever done, but I must admit this first week and a half with Kelsey is much, much harder. I'm still trying to hang in there and enjoy having her home more.

Thanks for reading and praying,

Patti

Another day at the doctors

We had two doctors appointment today, not the best plan on our part. The first was at 9:00 with the GI doc and Kelsey's blood work. He thought she looked good and her belly looked smaller but he was also concerned with the veins on her belly getting bigger. That's a sign the liver is not working well. We will have to wait till tomorrow for the blood test results.

Second appointment was a follow up with the ped. cardiologist, she thought Kelsey looked better, also, but thought Kelsey was still breathing heavier than she had. We all thought mostly because she can't breath though her nose well. Keep praying the nose clears up soon. We won't go back to see the ped cardio until Dec 21st. So, the heart surgery won't be planned until Kelsey's liver is better.

Tomorrow we are praying for test results that show Kelsey's liver is functioning better...that the counts will be the same or maybe even going down. : ) I know God can heal our baby girl and praying He will!!!

Until tomorrow...

Patti

Long Day at the Hospital

Getting a blood transfusion while not in the hospital is a very long process!!!! We left at 8:45am and didn't get home until after 5:00pm. When we got there the first thing Kelsey needed was an IV and she's been a very hard stick lately. Plan A, they sent for a NICU nurse and after 3 (painful) tries she gave up. So, plan B was the best from the IV team. They also set up Plan C, to have a surgeon ready to put in a temporary central line, if Plan B didn't work. We prayed very hard Kelsey didn't have to have the central line because that would mean she (we) would be spending the night. BIG Praise, the IV team nurse got a vein the first time!!!! All of this took most of the morning, so Kelsey transfusion didn't start until 12:00pm and lasted 4 hours. I had to feed her 3 times will there and pump myself, so it was a very busy day. Grandpa did come sit with Kelsey so Andy and I could go grab lunch.

Thankfully Gran was in town and stayed with Keeton most of the day. It seems like Keeton and his friend Travis seem to think they have to play together now every Friday. My friend Molly has been watching Keeton almost every Friday for a month now and I think Travis and Keeton think it's a permanent thing. Thanks Molly you have been a life saver, especially since you live so close. So yes, Keeton did spend a couple of hours at Travis' house.

Kelsey is still having problems with the nose being congested and making it harder to breath on top of the fluid on her lungs from the heart and the large belly pushing on her diapham. I'm sure being anemic doesn't help getting oxygen to the body, either. We're hoping this transfusion will help Kelsey feel must better. Also, pray her next blood test on Monday are finally showing some improvement.

Thanks for reading!!!

Patti

Kelsey's first few days home

It's been wonderful and totally exhausting to have Kelsey home. My friend Sheila asked me how is it going being full-time nurse, full-time momma, and full-time wife and it's very, very, very hard!!!!!!! Kelsey's doing good at home and her belly is a tiny bit smaller but still big. BUT her breathing is getting heavier and her irritated nose is making it worst. So, yesterday we took her to her ped cardiologist very worried. A chest x-ray, EKG and echo cardio later, the doctor increased a couple of her meds to help with increased fluid on her lungs from her heart. Pray that works and her breathing gets better.

Today, we had a follow up appt. with the hematologist and her blood counts were low and her liver function is still slowly going up. We're going tomorrow to get a blood transfusion, which will take about 6 to 8 hours. Please pray that goes well for Kelsey and Momma. Also, her liver function test was very disappointing. We were hoping it would start improving or staying the same by now. If it doesn't in the next week, it's not looking good for her liver to get better. A very scary thought. Please, please, please pray it will get better!!!!!!!!!

Sorry this is short, but it's all I have time for. As happy as we are to have Kelsey home, she's still a very, very sick little baby and this worried momma is tired and very stressed. Under these conditions it's hard to enjoy our little bundle of joy like I want too. Rom. 8:28 says, "And we know that all things work together for good for those who love God, who are called according to his purpose." I want to trust God to work this out but at times it's hard to remember to give Kelsey to Him and not take her back and worry about her. When we are weak He is strong and right now His strength is all I have because mine is gone.

Thanks for your prayers!!!!

Patti

Kelsey is HOME

I only have a minute, but wanted all to know Kelsey is home. There is so much to do for her, we barely have time for any thing else. And poor Keeton didn't do so well at CLC today, I think not having mama around the last several days is wearing on him. Kelsey seems to be doing well at home. She's a little stuff in her nose, especially on the left side where her feeding tube was before we switched sides. She was like this before we left the hospital so it's not new just a little worry some. Keeton was so excited when she came home yesterday. He couldn't leave her side. He kept saying "I like her mama." (Just wished he liked everyone at school today.) Will update more later when I have more time. I need a nap!!!!

Thanks for all the continued prayers. I'm praising God my baby girl is HOME. And, we measured Kelsey's belly again and it's still getting smaller just a little. It will take a couple of weeks to see a big difference, lets just hope that means her liver is getting better slowly, also. We've still praying for God's healing hands to fix that liver.

Patti

I'm spending the Night in the Hospital

We are still preparing to bring Kelsey home. : ) We have the feeding pump and oxygen to go home with. I've been learning how to feed Kelsey and give her her meds through the feeding tube. Tonight I'm spending the night at the hospital and trying to take care of Kelsey on my own as much as possible. Pray I get some kind of sleep between her feeding pump changing every 3 hours and me pumping myself, it's going to be tough. I can't believe she really might go home Monday!!!!

Keep praying all goes well...one great praise, Kelsey's belly measurered 1/2 cm smaller again today!!!!!

Patti

Kelsey might be coming Home????

As unbelievable as it sounds, Kelsey might be coming home as early as Monday. We are excited and very nervous at the same time, because she will still be on oxygen and her feeding tube. We will have to learn how to do both at home. Right now she's in a wait and see mode, and all they are doing for her is feeding and watching her oxygen level (which has been the same for some time). So, they said we could do that at home just as well. So, Andy and I will be at the hospital trying to assume full care of her over the weekend in the hospital so we can bring her home. This isn't a for sure thing yet, one of the doctors is still hesitant because of the chemo and TMD and Kelsey's still on mixed oxygen and they have to wing her to room air oxygen. They did move her feeding tube to her stomach yesterday and she tollerated it just fine. Now we are going to see if her can handle getting off continuous feeds next and slowly work our way to feeding by mouth.

This is very exciting but at the same time very scary, since we won't have any one at home to help if it don't know what to do with her. Her ascites is not getting worst, meaning she has stopped getting bigger, but it's not going down either. Her liver counts are still trending up just a little but not enough that the doctors are worried. We hope the fact that Kelsey's getting feed more fluids than ever and is still not getting bigger is a good sign but nothings shows that her liver is getting better for sure, yet.

Continue to pray Kelsey's liver will heal and pray Kelsey and Andy and I will be ready for our little girl to come home. I've prayed Kelsey will come home so much that now that's it here I don't know how to feel. I wanted her to come home completely healed, so this is weird. God works in mystious ways. He did answer my prayers just in His own way. God IS good and trust this is all part of His plan.

The heart surgery is still needed when her liver counts are better and the ascites goes down some. They want her to be in the best condition possible to have the best come from such a difficult surgery.

Thanks for all your prayers to get our baby girl home. I hope this will work, we will know more Saturday and Sunday. We keep you posted.

Patti

Nov 10, 2009

Kelsey's been doing pretty good the last several days. She has her last chemo dose tonight with no real side effects, yet. The next couple of days will be the important ones, as she will be most susceptible to infections with her white blood count expected to drop. So, praise all has been good so far and continued prayer that this treatment will work and she won't get any infection the next couple of days. We are still very concerned about her liver healing and starting to work better, asap. If it doesn't they talk like she won't make it, which is very alarming and scary to think of.

They have gotten to a point where getting an IV and drawing blood for various test is getting very difficult because most of her veins aren't good any more. So, they are going to put a PICC line in tomorrow or Thursday. They've tried before unsuccessfully, but this time Radiology is going to be doing it. Pray it works this time and that she won't get an infection with the it, either.

Because her breathing is stabilizing and there is no immediate danger, they are talking about moving Kelsey out of ICU and to the GI floor. We have mixed feelings about this. Good that they think she doesn't need the ICU support but scary because she won't have someone checking on her as much. We both feel like we will need to be with her more so she's not alone, but that means more time at the hospital for both of us and less time with Keeton.

Her belly is getting bigger but it seems a little slower. They drained 500 cc (a bottle of water) Tuesday a week ago. And although she doesn't need it at the moment, they are thinking they want to drain her before her white blood counts gets low and she's susceptible to infection from it.

One new good thing is they have been increased her feedings so she's now at 20 cc per hour. They are trying hard to get her to grow better. She seems to be doing ok but, tonight, Andy said she was spitting up a little. They are going to be watching and make sure she's still tolerating that much fluid tonight. Pray she can continue with this feeding as this is how much she needs for her size.

Because of all of this, I've been a little discouraged lately. I want to be hopeful that Kelsey will be better, but the doctors keep reminding me this treatment may not work. I keep praying and reading God's word but my heart is still a little heavy. I know I'm just really tired so that's not helping either. I really appreciate everything people are doing for Andy and I. We've had meals for us since Kelsey was born 3 months ago and it's been amazing all the people helping in so many ways. God has truly blessed us with loving family and friends and I'm very grateful and can't imagine going through all of this with out His help and everyone else's. I'm just ready for Kelsey to be healed and home.

Thanks for the prayers!!!!

Patti

Nana came to visit Kelsey girl and enjoyed holding her only granddaughter.

Molly came to visit little miss Kelsey, too.

Sleepy little baby girl.

Kelsey's 3 Months Old

Happy Birthday!!! Kelsey's 3 Months Old. She's all dolled up with bracelet, bow and ruffle socks in her cute little sweater outfit. Most of these are sweet gifts and Kelsey say thank you wonderful friends.

Here, Kelsey has her favorite little doll and another one of her favorite blankets that says "Angels are watching over me."

Sweet sleeping Kelsey. She usually still sleeps with her eyes open but sometimes they are closed when she first falls asleep.

Mama loves her sweet baby Kelsey.


Kelsey's just too cute in so many pics I can't decide which ones to use so here's another one.

What a Week!!!

Since Kelsey was moved on Monday, we've seen and talked to so many doctors that it's been exhausting. But, at the same time, exciting that so many doctors are trying to figure out what is causing Kelsey's ascites. All this to says most of them agree that Kelsey doesn't have a problem with her liver itself, but that the liver is sick because of her Transient Myeloproliferative Disorder (TMD) she's had since birth. Although it looks like the TMD is getting better the damage done to the liver is getting worst. So, Kelsey's hematologist wants to give her a low-dose chemotherapy treatment lasting five-days to see if this will help calm down her liver issues. We won't know if it will work for at least a week or two and Kelsey won't be ready for heart surgery for three week to a month. Her cardiologist and heart surgeon don't think she would make it through heart surgery at this point with her liver not working well. Kelsey still needs her heart surgery as soon as possible but will have to wait. Right now her lung pressures are good, but they need to stay good while we are waiting to see if this treatment will work. That's the other problem, this chemotherapy treatment may or may not work. If it doesn't, more than likely, Kelsey's liver will continue to get worst with no other treatment available. A thought we are trying not to think about. We are still praying for complete healing for Kelsey's liver. We know God is in control and are putting our sweet baby girl in His Hands to love and heal.

Please pray that this chemo treatment will work and that there won't be many side effects for Kelsey.

Pray also that her heart will continue to get better or at least continure to be a little stable. Oh, this last echo of her heart showed that the PDA is opening again. She seems to be doing ok with that but this is very important since we have to wait on her heart surgery.

Pray also that Kelsey will continue of grow. She hasn't grown as much this last month because of the fluid restricktions from the ascites, it's hard to give her enough food to grow well...not to mention her hearts and lungs are working so hard that she's burning a lot of caleries just to breath.

I hope all this make sense so you can best pray for our preious baby girl. I have some cute pics from her 3 month birthday I'll try to post asap. I know God is good no matter what and we are trying to patiently wait on His timing for Kelsey to get better and come home.

Patti

Keeton and little sister Kelsey

One good thing from yesterday is that Keeton got to see his little sister again. He even got to touch her little hand. He was so excited!!!! Here's some very cute pics....

Kelsey's pacifier is so big it covers her whole face.

Kelsey all ready for her second road trip.

Keeton can't take his eyes off of his baby sister.
Keeton's touching his baby sister's hand for the first time.

Keeton was so excited!!! Good pic of all the Matthews Boys, they all just adore little Kelsey.

Nov 2, 2009

Kelsey's at Children's now. Her new doctors will be working hard tomorrow and the next several days trying to figure out what is wrong and Andy and I are praying hard they will help her. It was hard leaving her tonight she wasn't feeling well with her belly as big as it has ever been. She hasn't cried much in the past but tonight she was and it was braking my heart. I know they will take good care of her but it was hard leaving her with people I didn't know. We got home after 9:00 tonight and I'm really tired, so this is short. Thank you for your continued prayers.

Patti

We're Moving Kelsey Again

Andy and I have prayed and talked about this for a while and we've decided to move Kelsey to Children's Hospital in Dallas. We are not satisfied with the diagnosis of Kelsey's liver issue (fluid retention) and want a second opinion. The only way to do that is to move her to another hospital. When we went to Medical City we were moving her to have heart surgery. But now, her liver is the more important issue and we think she would do better at Children's where they have more specialist that deal with unusual problems like Kelsey's. They just called to tell us they will be moving her today. We're not sure what's going to happen today but could really use some prayer that it all goes well. The next couple of day we hope and pray to have more answers about Kelsey. It' will probably be a hard couple of days for Kelsey and Andy and I as this new team of doctors redo test and look over her medical records. We continue to pray God will give all of us wisdom and comfort and take care of our sweet baby Kelsey.

Thanks so much for praying,

Patti

Oct 29, 2009

I can't believe it's been almost a week since I posted anything. WOW. Kelsey's been about the same including retaining a lot of fluid. They took 140 cc off Saturday, which wasn't as much as we thought they would get but she did feel better and was more active Sunday. They lowered her oxygen flow to 2 and increased her feeding to 12cc per hour (she was at 11cc per hour). She continued to gain fluid over the next several days but she has been breathing well despite the growing belly. But, today they tapped her belly again and took off 450 cc (that's 15 oz)!!!!! She looked so great tonight and was full of energy and life!!!!


I've been nuzzling with her since Tuesday and she's been doing ok but tonight she was amazing. I always pump before I nuzzle with her but tonight she was sucking so hard I could hear her swallowing some milk the pump didn't get. And, she did just fine with breathing and swallowing (I know she wasn't swallowing much, but momma was still excited). With her belly still big, they can't give her a large volume of fluid during a feeding so they give her food on a continuous feed. So, we can't really try and see if she can take a bottle or breastfeed because of that belly again. So, please continue to pray something changes with the belly so she can come home.

One big change, Kelsey's heart surgery has been moved up. It's now November 10th!!!!! Please pray for all that is involve with such a major surgery. I'll send more specifics the closer it gets to the date. Her platelets continue to be in the normal range : ) and her liver tests seem to be getting back to normal but the fluid is still there?????

Thanks for checking on Kelsey and us.

Patti


Kelsey loves her soft cuddly blanket from Aunt KK.

Flower Power!!!! This is after the 450 cc of fluid was taken off.

Here's Kelsey's big belly before the 450cc were taken off.

Latest Pics of Kelsey Girl

Our precious baby Kelsey. Isn't she adorable!!!!!!

Here's Kelsey looking at Mama.

Grandpa comes to visit Kelsey all the time but usually when no one else is there so he doesn't have to share her with anyone. So, this is the first picture I got of the two of them. Kelsey really has Grandpa wrapped around her little finger.

Kelsey with her cute little bow and favorite blanket.

Kelsey with the c-pap. She didn't like it at all and is so glad to be off it.

Another pic with c-pap. But she still look pretty darn cute!!!

Kelsey, doing the thinker pose. I wonder what she's thinking of?????


Lisa came to visit Kelsey before her surgery but I'm just now getting her pic on the blog. I like to have pic of all Kelsey's visitor.

Kelsey has so many clothes and blankets, one of the nurses made her own little closet. Kelsey's Kloset...

Oct 23, 2009

We got another praise today. Kelsey's platelet count was 177!!!! That's all by herself and totally in the normal range (130 to 400 is normal). As happy as we are about this, it's bitter sweet because her belly is getting bigger, again. It was the same for several days but now it's getting bigger????? We totally feel if it wasn't for this ascites (fluid in abdomen), she could be getting off the oxygen and starting to learn to feed so she could go home before the heart surgery.

We also found out today that they have scheduled her open heart surgery for November 19th. We are totally praying for a mirical to happen before that and her VSD would close. It did look a little smaller yesterday, but more than likely it won't close in four weeks. Meanwhile, we so praying she would stop retaining fluid (#1 prayer request), so then, she can get off the oxgyen and start the learning process to bottle/breast feed on her own (and do all of this before her heart surgery!!!). Four weeks, is a long time to just sit around and wait to see if she will get better after the heart surgery. We want her to start getting better sooner and the only thing that can really make a difference right now is for the ASCITES TO STOP. That would make a world of different with our little girl. So, please make that your number one prayer request.

We've prayed for her platelet to get better and they did. We prayed for her PDA to close and it did. We prayed she would do good with the surgery and she did. We prayed she didn't have liver failure/damage and she didn't. God has been so very good to us and has answered so many, many prayer requests for our baby girl. We know He will answer this one, too. Mark 11:24 says, "Therefore I say to you, whatever things you ask when you pray, believe that you receive them , and you will have them." Prayer is nothing if you don't truely believe God can and will answer. We know this will happen in his timing. He loves baby Kelsey and wants the best for her.

MyFriend Sheila sent me this verse also, “He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40: 29-30. We are tired of waiting and frustrated her belly is not changing but we put our hope in the Lord and He will give us what we need to make it though this, too.

Thanks for your continued prayer and surpport,

Patti

Oct 22, 2009

We're still very frustrated about Kelsey's liver and her retaining fluid with no real answer as to why and when it might stop and even if it will get better, BUT we did get some good news this morning. The ped. cardiologist called this morning and said Kelsey's PDA closed!!!! We were asking God to closed it and it did, big praise. She still has the VSD. And although she thought it was getting smaller, she doesn't think it will close also (but it could, who knows). Kelsey got off the c-pap yesterday and is back to her nasal cannula. She's getting breathing treatments still and who knows how well she will do with getting off more oxygen. She is still gaining fluid in her abdomen and there is nothing they can do to stop that. It's all up to her whether it gets better or worst.

As excited as I am about he PDA closing, I'm still very frustrated with the liver situation and lack of definite answers. We just want our little girl better so she can come home SOON. It just seems like she's been there so long and we have no end in sight. Pray for patience for Mama and Daddy. I feel like I have two different lives. One out here in the real world with Keeton, family, friends, and housework. And then another when I go to the hospital. That life is seperate from every thing else and I can only live in that world for a couple of hours a day. I'm so ready for these two lives to be one, so I can share this sweet precious gift with everyone and anyone and I can hold her and love on her anytime I want.

Keep praying for our sweet baby Kelsey!! I have some cute pics of Kelsey I will try and update them later today.


Patti

Oct 19, 2009

Sorry, it's been so long since I updated everyone. I was just hoping to have more to update on. Kelsey is off the ventilator but she is still on the c-pap to help her breath better and they are giving her breathing treatments. We hope she will be off this soon. Her belly is getting a little bigger since the surgery but not nearly like it was. So, we hope this is a good sign. Also, her platelets were 135 yesterday a big surprise, we're praying they stay up and don't go down again. They will test again in the morning.

We did get the biopsy results but they didn't exactly tell us what is wrong. It did tell us there are a lot of things working right and it ruled out most things that could be wrong with the liver. It showed there was mild fibrosis and that some of the cell were dying but they don't know why???? The other thing it showed was that the liver is making red and white blood cells, which it shouldn't, and that is why it is big (too many extra cells). This is a residual effect of the myeloproliferative reaction which she had at birth and is common in babies with Down Syndrome. The blast cells are all gone but the side effect of making extra red and white cells is still around. So, the only thing wrong with her liver is this myeloid thing but it doesn't usually cause this much ascites (fluid in abdomen). There is nothing they can do to fix this, Kelsey's body is going to have to fix this herself. The liver is an organ that can repair itself. The doctors say it will either get better or get worst. We just have to wait and see. Back to feeling helpless.

They are going to wait on the heart surgery to see what the liver is going to do. They don't feel comfortable doing the heart surgery with the liver not functioning correctly. So, we are back to wait and see with the liver. We have talked with several doctors about the results and even got some input from a doctor at Children's. Please pray for healing for the liver and patience for us. There are some signs the liver might be getting better but they are very small at this time. We keep reminding ourselves God is in control and we know He loves baby Kelsey.

Thanks again for the support and reading our blog,

Patti

Oct 16, 2009

Well, Kelsey's back on the ventilator. We got a call at 4:00am this morning telling us they needed to put her back on the ventilator, which scared us to death. That was the first time they have called us in the middle of the night. We thought at first it was worst than it really is. Andy ran up to the hospital to check on Kelsey and I spent the next hour in prayer. Later that morning, we both went back up there and she seemed to be doing ok. Between the pain meds and the soreness from the incision, she wasn't taking deep enough breaths, so instead of letting her struggle they put her back on the ventilator. They will be doing some breathing treatment to help open her lungs and hope she will only be on the vent another 24 to 36 hours. We still don't know any news from the biopsy, we might late this afternoon or we might have to wait until Monday. Kelsey drop her weight to 6 lbs 8 oz but we're not sure if that's good or bad. It's hard to tell what's good weight or just fluid weight. Her belly is also measuring a little smaller but we're not sure if that's good either. So, basically we are still waiting for results and hope this breathing treatment helps and she can get off the vent soon.

I know everyone is still praying and we are so very thankful so many people care about Kelsey and our family. Kelsey's in God's hands and I know He loves her!!! A friend of mine (Diane) sent me this verse and I absolutely love it. I so needed it and read it over and over this morning between 4:00am and 5:00am. "Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. Psalm 62:5-8

If we find out anything today, we will let you know.

Patti

Oct 15, 2009

Kelsey finally got off the ventilator around noon today and looked very good. They are still monitoring her closely to make sure she doesn't need to go back on the ventilator and if she needs any pain meds. We are still waiting for the pathology report to come back but don't know when that might be. Hopefully, this week but might even be Monday. Please pray they will be able to tells us what is wrong and that it can be fixed. Waiting is so hard to do when you are helplessly looking at your little baby girl all hooked up to machines and not able to hold her. If the report comes back with something they don't know what to do with please pray we can find the right doctors that will be able to help her. FYI before surgery Kelsey weighed 7 lbs 9 oz and last night she weighed 6 lbs 12 oz.

Patti

Thank you for all your prayers. Kelsey's biopsy/surgery went very well---BIG Praises all around. God answered all our prayers just as we asked as far as the surgery itself going well and her initial recovery. She's still has a lot to heal from the next couple of hours and days. We won't know anything specifically about Kelsey's liver until the pathology is back, which will take several days. But, the surgeon said visually the liver looked sick but it's not in complete failure (another big praise!!!) Her belly is back to looking like a normal size, which was wonderful to see (but it will probably get bigger again : ( She looks great but is still completely out of it. Hopefully, tonight she will come off the ventilator and we can hold her.

Next step is to wait for the pathology report to see if there is something we can do to help the heal the liver or wait until it heals itself. And, most importantly see when we can possibly have open heart surgery to fix her heart. This was a big victory but we still have a long way to go before Kelsey will be completely healed and can come home!!! We are waiting for that day and praying it will be soon.

On a personal note, this was one of the hardest things I have ever gone though. I can't imagine doing this without my Lord and Savior, Jesus. My heart was very heavy when they took her down to the OR. Then, I had to pump, then eat lunch and just when we came back to wait they called as said it was over and Kelsey was doing well. The time amazingly went by so fast that it had to be God giving me the hope and peace that I had asked God to give me to make it though all this. I'm praising God from who all blessings flow!!

Thanks again for all your prayers!!


Patti

Oct 13, 2009

We found out today that Kelsey's surgery is TOMORROW morning at 11:00am. All her tests came back negative (Praise) so her liver biopsy is back on for tomorrow morning. Yesterday, they did drain 270 cc (over 9 oz) from her abdomen again. This morning her platelets were 97 (another praise) but her hematocrit was low so they gave her another blood transfusion (they took so much for the testing this is not surprising). We are glad the biopsy is back on but also very apprehensive about Kelsey undergoing surgery. Please pray for several things, first, that Kelsey will be able handle the surgery over all...which means(1)pray Kelsey will do well with the anesthesia given her heart condition, (2) she will not bleed internally from the incision and from the liver biopsy, and (3) her body will handle the loss of all that fluid when they open her up. Also, pray for her recovery especially (4) coming off the ventilator and the anesthesia and also adjusting to the fluid loss. (5) Pray for the surgeon as he assesses Kelsey's liver visually. If it looks inflamed or slightly damaged, he might be putting a catheter in to drain the fluid easier until we they can determine what's wrong with the liver and fix it. But, if it looks to damaged he will not. Pray also for the NICU doctor and nurses as they monitor her recovery.

Our hope and prayer is that this is something that can be fixed and we are trusting God through all of this. We appreciate all your prayer and support for Kelsey and our family. Pray also, for our heavy hearts as we wait for Kelsey after the surgery and for the results from the biopsy, which will take several days to find out. I know there are things I'm leaving out but I wanted you to know what was going on so you could pray correctly.

Patti

Oct 11, 2009

We did have some big praises today. First, one of Kelsey's test for Hep-C came back neg but the second won't come back until Tuesday (we think). Second, her platelets were still good at 110 (thousand). Third, she was doing good with her oxygen despite her large belly, so they aren't going to drain her, yet. We don't have a date for the rescheduled surgery, but as soon as we do we will let you know.

Kelsey had a great weekend. She's is getting more and more alert. She had several visitors this weekend and loved every minute of it.

Thanks for reading and for praying for all of us,

Patti

Pics from this weekend, our sweet Kelsey girl has an IV in her head...not our favorite place to put one especially for pictures. It's been there from Thursday and since they are hard to hit they have just kept it there. : (

Saturday Ronny and Patty Matthews came to visit Kelsey.

On Sunday, Aunt Lisa came to visit again.

Andy's second cousins, Shelly and Piper, came from Austin to visit sweet little cousin Kelsey.

Mommy and daddy with baby Kelsey girl.

Oct 9, 2009

Kelsey's doing good today, breathing well despite her enlarged belly. They've sent her blood work off but won't get anything back until Monday or Tuesday. Then they will reschedule the biopsy. In the meantime, we hope Kelsey might get a little better not worst. We did meet with several people and talk about what's going on with Kelsey's care and feel a little better they listened to our concerns. Not sure what else we can do but continue to trust God and pray the doctors are doing what they can. Kelsey's situation is very unique and they're not sure they know how to best help her until the biopsy is done. Her thyroid is improving but not completely back to normal, still waiting. It's been two weeks since she's been on the med and they said it would take 2 to 3 week for that to improve completely. They will watch her platelets and continue to hope she will start making all her own platelets. They are keeping an eye on her lungs and breathing which is difficult because of her heart and large belly.

Thanks again for your prayers and words of encouragement!!!

Patti

Here's some new pics of our sweet Kelsey...

Here she's daddy's sweet girl.


Here she's momma's baby girl.

Miss Shelly came to visit Wednesday.