We Love Our Sweet Little Kelsey Girl!!!!!

Kelsey had a rough day yesterday but a stable night. Her chest drain isn't working any more and her lungs are fillig up with fluid. It's getting harder and harder for her to breathe and requiring more and more drugs to keep her stable. Today, Andy and I are going to have to make some difficult decisions today. Our sweet Kelsey girl is a little fighter but her little body is getting weaker and weaker. Thank you for your continued prayers for peace, strength and comfort for all of us. Psalm 46:1 "God is our refuge and strength, a very present help in trouble."

Patti

Kelsey's Hanging in There One more Day

We had a very big scare yesterday between 12:00pm and 1:00pm. Kelsey's heart rate and SAT dropped and her whole body turned blue, it was very scary. The crash cart came in and they were about to start compression when her heart rate came back up. The rest of the day she did pretty good. When she was awake she would suck on her pacifier, move her arms and legs all around and follow you with her eyes. She seemed happy and we just tried to enjoy this time with Kelsey as much as possible.

At this point the doctors are sure nothing else can be done to save baby Kelsey. We are just going to keep her comfortable as long as possible and try to spend as much time with her as we can. We have told the doctors if her heart drops again to do everything possible up to the point of doing chest compressions...at this point that would be very painful for Kelsey and we don't want to do anything that would cause her any more pain. They sedate her when they need to move her to prevent her from getting up set, so since yesterday she hasn't had a bad drop in heart rate.

Late last night I sort of held her again. I wish I could just scoop her up in my arms and really hold her. I know my God is with her and comforting Kelsey and all of us. Thanks for your prayers and support. Kelsey is truly a Gift from God and we are so grateful for this time with her. We are trusting in God's will and timing at this point, so we don't know what's going to happen today, tomorrow or the next several days. We just ran home to get cleaned up and are heading back up to the hospital now. I will try and let you know what's going on as much as possible.

Love Patti

Kelsey had Another really Bad Night

Things aren't looking good for our sweet baby Kelsey. Just Keep us in your prayers today, it's going to be a tough one.

Love,
Patti

Kelsey's About the Same

Kelsey's doing about the same...she's losing an incredible amount of fluid every day (about a 1/3 of her body weight) and they are replacing it to keep up blood pressure up. We have a care conference planned for Tuesday where all of her doctors and nurses are meeting with us to talk all this over one more time. Please pray something good will come of this meeting. We are continuing to take one day at a time with Kelsey and spend as much time with her as possible. God has blessed us with another day with her. She did drop her heart rate a couple of times (this happens when they move her and when she gets mad) that is scary. Today she even turned blue-ish/purple. I know God has his hand on Kelsey and I'm thanking Him for every minuet with our sweet little girl.

Keep praying for a miracle.

Patti

Bad Day But Tonight Was Good

Kelsey had another rough day...her chest tube was clogged again but they finally got it working so tonight she looked much better. She is still having trouble with her blood pressure and a whole lot of fluid is continuing to drain. Andy and I helped give her a bath tonight and she looked good when we finally left tonight. Pray the night goes well and tomorrow is better than today. Taking it one day at a time.

We have lot of pics we want to share....




This is our sweet Kelsey girl tonight!!! Her face and chest are still a little puffy.


This was Kelsey while were we getting her bath ready. She knew what was coming!!!

Here sweet Kelsey is looking up at momma and daddy.

This is Kelsey all tucked in for the night with her princess fairy socks.

You just have to see a close up of her precious socks (thanks Ms. Lisa)

This was earlier today after they kept messing with her and her chest tube.

Keeton came to visit Miss Kelsey today also. Keeton loves his baby sister!!!!
This was taken Feb 10th, remember she sleeps with her eyes open (still).
Momma got to sort of hold Kelsey on Feb 9th and daddy held her the night before. She's laying on a pillow in my lap.
This is momma and daddy with Kelsey on her 6 month birthday Feb 4, 2010.
Keeton enjoying the snow Friday. This is daddy and Keeton on a four wheeler in the snow.
Keeton went bowling for the first time. He's pretty good and he did have lots of fun despite the look here.

From Bad to Worst

After a bad weekend last week, we were hoping this week would be better but it's just gone from bad to worst. Kelsey is draining about a liter a day now. She had some problems with her chest tube drain this week. Tuesday it was clogged, Thursday they put in a bigger one, Friday morning it came out and Friday night they put in yet another chest drain. She's starting to drop her heart rate at moments and they don't know why. Her vent sets are higher because of the problems with the chest tube and her face is puff again. Most of the doctor now think this is part of her down syndrome and Transient myeloproliferative disorder (TMD). From the TMD her body is producing an inflammatory marking in her blood. They have always told us she would either get better or worst. She's now getting worst. Her blood pressure is dropping and they are having to give her more and more fluid to get the pressure in her vessel high enough to work.

I'm thankful for my personal relationship with God and His presence that is with us now, at our time of need. I've been listen to several songs by Jeremy Camp. I didn't know much about him until just this week. The song "Walk by Faith" (http://www.youtube.com/watch?v=dEkh_KxKao0) was written on his honeymoon. Three months later his wife died of overian cancer, she was 21 and he was 23. His first song written after her death was "I still believe" (http://www.youtube.com/watch?v=Myxg69UpMOA). He's now married and has two daughters and is boldy singing about his Lord and Savior. His latest song "Speaking Louder Than Before" http://www.youtube.com/watch?v=JitOS26V5Q4 is his latest endeaver to reach others with the message of Christ. These songs say what's on my heart right now!!!

I'm not sure what's instore for Kelsey, momma, daddy and Keeton this weekend and week but I can only trust in my loving God to see us though. We are still praying for a mircle for our sweet baby girl.

Thanks for your prayers,

Patti

Tired and Frustrated

This has been a tough week for the Up Family. Tuesday, Kelsey got a more permanent abdominal drain and it was not what we were expecting. They say they were going to have to tunnel it under the skin to reduce the risk of infection and it would also last longer. But what they didn't say was that this tube was that they tunneled under her skin was huge!! It was another surgical operation. They talk about giving Kelsey time to heal but they keep doing procedures on her little body making it hard for her to really heal. Her chest tube came out several day ago and they were hoping they would not have to put it back in but last night she had a lot of fluid in her lungs so the chest drain is back in also. Yet, another procedure.


They still don't know exactly why Kelsey has all this fluid. They know the liver it probably the biggest to blame yet that shouldn't cause fluid in her lungs so she must have some vascular or lymphatic issues also. They are trying different things to help but most of the things they are doing to keep her stable are also making her worst. She needs the vent but the longer she's on it the hard it's going to be harder to get her off. The vent also damages the lungs. She also need very strong diuretics but those are hard on the kidneys, so they could get bad at any moment. Kelsey also has a ton of gas in her belly so they are trying a different formula to see if they can cut down the gas but to do this they had to put her on TPN which is hard on the liver. Kelsey definitely doesn't need anything that makes her liver worst. They also needed the TPN because they stopped her feeding right before her surgery Tuesday. Luckily today they took her off TPN. All of these are necessary but they have side effects that aren't the greatest for Kelsey's situation.

Yesterday, Kelsey was 6 months old!!! Andy and I never imagined she would still be in the ICU 6 months later. It's getting harder and harder the long she's there. We are constantly reminded how sick our little girl is and the fact that we could lose her is always a possibility. We try not the think about it but it's always a reality. I know my little girl is a fighter and also know she has come a long way but she has so much more to go before she's out of the woods. All we can do is pray and trust God but that is getting harder and harder to do. When I'm sad I read God's word and all the notes and comments other have made to encourage us (thanks), listen to my favorite Christian music and Pray Pray Pray. I would love to say I always feel better but the reality is just because I want to feel better sometimes you just feel sad, and that's ok!!!! God still loves us more than ever. Our Sunday school class has a motto "struggle well" right now it's more struggle than well. I know God is there and has a plan and that this is just a season of our lives but we are ready for the next season.

Trying to struggle WELL

Patti