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.

Oct 8, 2009

Well, we had an interested turn of events today. Kelsey got all the way down to the OR table and the doctor was making sure everything was in order and found out she hadn't had been tested for Hep-C. So, he said he won't do the surgery until that was done. So, the surgery was postponed until ????? We are relieved and frustrated at the same time. Some of you already know, but Andy contracted Hep-C in the 80's from a blood transfusion for his hemophilia. (That's a whole other story.) Anyway, I was tested when Kelsey was born and was neg, so that should make Kelsey neg also. But just in case the surgeon wouldn't do the biopsy until Kelsey was tested, also. Because Kelsey was transferred from another hospital it was assumed she had already been tested but she wasn't. So, no surgery for Kelsey today. It will take a couple of days to get the Hep-C results back before they can reschedule the surgery. We don't know why this happened this way but can only know God is in control and He knows.

Her platelets were down to 80 so they did give her more platelets before the surgery. They didn't drain any fluid before the surgery but because it was postponed, when she got back to the room they did drain 180 cc (6 oz) off this afternoon. We are back to waiting. We will continue to pray for healing for her liver and this fluid situation.

Not sure what else to say at the moment but a big thank you for all your prayers this morning!!!!! One day I hope to know why this happened but for now just have to trust it's all part of God's plan.

Patti

Oct 7, 2009

Kelsey's the same today, which is a good thing her belly stopped getting bigger. She's breathing fine, so they didn't drain any fluid from her today. : ) They didn't do any tests today so nothing new to report there. Yesterday, they tested her platelets after she got some on Monday and it was 109 the highest it has been in a very long time. They'll test them again in the morning and if they are below 100 they will give her some more before the surgery. As long as she is doing ok they won't drain anymore fluid before tomorrow, either. Although, the doctor did say when they open her all that fluid will come out. Hopefully, that will go well and her body will adjust to the fluid loss well.

We still don't know many details about when we might know the results of the biopsy. We not even sure what we want them to find. We're praying it's good news about the liver but also that there will be some answers as to why she's retaining so much fluid. We're just trying to be patient about everything. Andy and I are going to the hospital around 10:00am and Kelsey's surgery is 11:30. We will try and up date the blog as soon as we know something to update about. Thanks for checking the blog about Kelsey. I know their are a lot of people praying about tomorrow and we are thankful. We are put Kelsey in God's hands and I have to try and leave her there. I have a tendency to want to take her back and worry about her. God's in control. A friend sent me this verse yesterday. "Ah, Lord God! It is you who have made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you.- Jeremiah 32:17 I told her Keeton has been singing this song from CLC over and over and it's stuck in my head and it totally goes with her verse. The song is "My God is so big, so strong, and so might. There's nothing my God can not do!!"

Until tomorrow...

Patti

Oct 5, 2009

Well, we don't much than before about Kelsey. She does have her liver biopsy scheduled for Thursday at 11:30am. Much prayer needed for that!!!!! Because of her size they didn't feel comfortable doing it a closed biopsy so this will be a SURGICAL biopsy. So, when they open her up they can look around while they are doing the biopsy. Mommy and daddy are a little concerned to say the least but can only trust God to help us through. He's been there for us so far and we know He will continue to hold Kelsey in His hands. We are trusting her doctors and nurses, too. Our number one prayer is that the damage to her liver is minor and something she can recover from. The doctor said this could be one more side effect from her heart but nothing is for sure. We just know she needs her heart fixed ASAP but she just can't handle that at the moment. So, our 2nd pray is for her to stabilize enough so they can do the heart surgery. They did give her more platelets again today and drained 5.6 oz of fluid from her stomach, again. They will probably do that again before Thursday. When it comes to the liver there is really nothing they can do to fix it. She has to fix it on her own...we just pray with time she will!!!!

Someone said I sound so strong on this blog, but truth is I'm very scared, sad and lonesome for my sweet baby Kelsey. When we are week He is strong!!! I pray everyday (usually crying in the shower) God will give me the strength and comfort I need to make it though one more day and He is always faithful to give me what a need in so many ways. Like with a scripture from his Word, a call from family or friends, emails that say just the right thing or praise music. One of Kelsey's nurses moved a radio into Kelsey's room and I've been listen to KLTY for about a week while I hold Kelsey and visit with her. Praise songs have really been a blessing to me in her room, it's a consistent reminder that God is there, too. (I love KLTY but sometimes wish there wasn't any commercial, it's hard to sweetly rock baby Kelsey with a commercial in the background.) I think the praise music helps me and Kelsey!!!!

On a happy note, yesterday was Kelsey 2 month birthday!!! She had several visitors to celebrate her big day. Momma, daddy, Nana, Gran, Aunt Mary and Uncle Al all came to visit her. I'll add pictures below. She now weighs 6 lbs and 15 oz and is 19 inches long. A long way from her birth weight of 3 lbs and 12 oz and 16 inches. She had a very good day yesterday and a pretty good one day. She's more awake and alert every day, especially when she has visitors. She's a very social little girl!!!! (Just like her daddy!!)

Thanks for praying for all of us!!

Patti

Pictures from yesterday...

Here's Aunt Mary and Uncle Al wishing Kelsey Happy Birthday (2 months old).

Sleepy girl in her cute Little Sunshine outfit.
Momma holding Kelsey girl on her birthday.

Daddy holding his little girl.

Oct 3, 2009

After the ultrasound and x-ray they are thinking she might be having liver failure. They did take 5 oz of fluid out of her belly this afternoon. A liver doctor is coming to see her this weekend sometime and she might be doing a biopsy in a couple of days. They are giving her a blood transfusing right now to make her a little stronger.

Thanks for all the prayers!!! Kelsey's in God's hands now and He is the Great Physician!!!

Patti

Oct 3, 2009

Please pray for Kelsey ASAP. Her abdominal area is growing larger and larger and the doctors don't know why. It's very frustrating right not know why and how to fix it. We feel helpless and can only pray for our little girl. They are doing an ultrasound and X-rays this morning, so pray this will have the answers we need.

Thanks

Patti

Oct 2, 2009

Kelsey's hanging in there. A couple of big praises...her platelets were up the last two days and her thyroids levels are getting almost normal. Now, she needs some big prayers for her enlarging abdominal area. The doctors claim is her liver but it's got to be more than that. Her lungs still have a lot of fluid on them and she's having a hard time breathing. She gaining weight but a lot of fluid, also. She getting more and more alert and we even got a cute pic of her smiling. She starting to show us more and more of her sweet personality.

Today's been a tough day on me, it's her official due date. And, I'm a little discouraged that she's still so far from going home. I know God's in control and His timing is perfect but I'm a little sad not having my little girl at home in my arms all the time. I'm also feeling like I'm missing her growing. She will be 2 months Sunday and she's spent all that time in a hospital, away from momma, daddy and big brother. So, say a little prayer for me today. Also, I'm still sore from my surgery but feeling a lot better.

Patti

Pics from the last several days...

Kelsey's with Gran, Momma and Nana!!

Kelsey and her cousin Jenna!!! Thanks for visiting us.

Aunt Jane came to visit, also.

Kelsey looking too cute with her little head bow.