Kelsey's Sevice Was Amazing

Monday and Tuesday were very hectic trying to plan and do everything for Kelsey's service but Andy and I had so many wonderful people helping that the results were amazing. Andy and I felt like God definitely had a hand in the service because it couldn't have been any more perfect. I thought my husband's speech was the best speech he's ever done and I was so proud of him. Everything from the music, the minister, the programs, the flowers to the church itself was just so wonderful. Andy and I were so grateful our young married adult minister, Chris Kouba, did Kelsey's service. He has been with us praying for and encouraging us during this whole journey with Kelsey. Chris is a dynamic speaker and such a caring minister, he and his family have come to mean a lot to our family over the last six months.

Our GATEway class has also been amazing over the last six weeks. Several people have asked us what is this GATEway group we keep talking about (some were wondering if they were another church or something). GATEway is our Sunday school class at Prestonwood and the GATE stands for 'gifts and talents exercised'. And let me tell you, they are very gifted and talented and love to use their gifts for the glory of God. The wonderful programs were made by one of my best friends in the GATEway class, Sheila, who happens to be a graphic/web designer. Two of the singers were also from our GATEway class. My sweet, sweet friend Angie sang and played 'Jesus Loves Me' so beautifully. And, Joel did an outstanding job of singing and playing 'Amazing Grace'. And after the service, our little GATEway class made and served my family and close friends dinner at the church. They have been a blessing to Andy and I for so long. The unending prayers, notes and emails of encouragement, sweet gifts for Kelsey and lots and lots of dinners have been an incredible blessing during this time of our lives. Going to church is great but if you are not involved with a Sunday school class or a christian group of some kind you are missing out on a huge blessing God has for you.

It was also so wonderful to see so many friends at Kelsey's service. Andy and I are blessed with several "subset" of friends, as our friend Shiela said. Andy's hemophilia community is and were amazing during this time, too. Cassie, whose son has a bleeding disorder similar to Andy's and Andy has known for years, wrote the sweet poem "Tiniest Missionary". She also crocheted the cute little shoes Kelsey was wearing (she's very talented). Several of them also brought us food, and Shana wins the award for the bring us the most dinners over the last six month (thanks so much Shana).

Another group we were blessed by is our neighborhood MOM's group. We got to meet so many of our neighbors as they brought us food. We felt so blessed to have such wonderful neighbors. Thanks Molly for doing an incredible job organizing everyone, you're the best!!! Thanks for watching Keeton so much, too. I think Travis and Keeton think every Friday they should play together.

Our newest group of friends is the from the Down Syndrome Guild of Dallas. Although we never really faced many of the differences families go through with a child with Down Syndrome we still felt apart of this family, too. We plan to continue to be apart of this community for many years to come. Thanks for all the donations made to them on Kelsey's behalf. They are letting us know as you donate : )

As my sister leaves in the morning, all our wonderful family will be gone and we are going to miss having them here. God blessed Andy and I both with wonderful families that know and love the Lord and we are both grateful for being raised in godly homes. We plan to continue that legacy with our family.

I'm not sure how the next couple of days and weeks are going to be for Andy and I. We both miss our sweet little Kelsey so much!!! We have been so busy this week that we haven't really had a lot of down time to let all of this really sink in. Please continue to pray as we continue with the mourning process, I guess that's what you would call it. I know God will be with us guiding us through this process just as He has always been there for us and we will get though this, too. It's just going to take awhile for the hurt not to be so deep and the loss so great. Luckily, we have so many new friends to help us, too.

Wish I had time for more but I really need to get to bed so I can get up for church in the morning.

Keep praying (and checking the blog) for the Up Family...

Patti

Finalized Details on Funeral

The viewing will be Tuesday Evening from 6:00pm to 8:00pm
(open casket)
Allen Family Funeral Options
2120 W Spring Creek Pkwy #E
Plano, Tx 75023
972-596-8200.

The funeral service will be Wednesday morning at 10:00am
(closed casket)
Prestonwood Baptist Church
6801 W. Park Blvd
Plano, Tx 75023

Followed by the Grave side service at
Sparkman Hillcrest Cemetery
7405 West Northwest Hwy.
Dallas, TX 75225

If you want to make a contribution to
Down Syndrome Guild of Dallas, their website is
downsyndromedallas.org.

I'm sorry this is so just informational (is that a word???). Today has been a long day of planning something a mother should never have to plan. I guess in some ways it keeps my mind busy so I don't spend the whole day crying and missing my sweet baby girl. Everyone keeps asking if I'm ok and I know it's just because they want to help and not sure what else to say. I'm ok but really I'm not ok. This journey with Kelsey has been the best time of my life but at the same time it also feels like the worst. Right now, I find comfort in the loving arms of my heavenly father and can only continue to pray. My sweet aunt reminded me of a verse that means a lot at the moment. Romans 8:26 "Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered." Right now my heart is braking and I know in time the pain will ease but until then I will try my hardest to depend on my God, my husband and family and friends to help me though.

Thank you for just loving on me and my family and continuing to pray.

Patti

Funeral Information

We are still working on the details (so this might change a little) but I wanted to share what we know so far.

The viewing will be Tuesday night at
Allen Family Funeral Options
2120 W Spring Creek Pkwy #E
Plano, Tx 75023
972-596-8200.

The funeral will be Wednesday morning, 10:00am at
Prestonwood Baptist Church
6801 W. Park Blvd
Plano, Tx 75023.

Several people have asked about sending flowers or giving donations made in Kelsey's name. We welcome flowers and would love any donations to be made to the Down Syndrome Guild of Dallas (we will send more info on where and how as soon as possible).

Thank you for your continued prayers and all the wonderful and encouraging comments.

Patti

Our Sweet Little Girl Is In Heaven

I just wanted all of you to know around 4:15pm our sweet little Kelsey Girl went to be with Jesus. We love her and will miss her so very much. The Lord blessed us so much in such a short time with Kelsey.

Thanks again for your support and prayer,

Patti

Sweet Kelsey Girl

Kelsey is struggling to breathe without a lot of pain reliever. She was dropping her heart rate earlier in the week when she was uncomfortable but since we have been trying to keep her more and more comfortable she now is having trouble just breathing (because the left lung is collapsed and the right lung is filling up with fluid). She will be so sedated that the only thing left will be to take her off the ventilator today or tomorrow. We are just continuing to trust in God for comfort and timing. We love our sweet Kelsey girl so much!!!!

Thanks for your continued prayers,

Patti

This picture was taken Thursday, one of Kelsey's favorite nurses Libby brought this flowerbow and she loves it. Thanks Ms. Libby.

Keep Praying For God's Will and Timing

Right now all Andy and I can do is wait for God's will and timing with Kelsey. She had a rough morning but is doing ok right now. We are continuing to trust God for that is all we can do.

Patti

Precious Pictures of Kelsey

We had another pretty good day with Kelsey. She did have to have her chest drain removed and yesterday they removed several other things so she would be more comfortable. Tonight they moved her to a big twin bed so we could lay down with her and we wouldn't have to move her to hold her (it's very hard on her to move her at this point..she so big). It was so sweet to watch Andy laying in the bed with Kelsey, both of them sound asleep. Andy and I are ready and know Kelsey won't be with us for much longer. Thanks for your continued prayers. God is with us and we are experiencing so many blessing with Kelsey these last couple of day. One that I forgot to mention is our nurse, Tiffany, that has worked FIVE day in a row just to be with us and Kelsey these last several days. She has truly been amazing and wonderful. She is going on vacation with her husband over that next week and a half and I'm glad she's getting the rest she deserves and needs. Keep her in your prayers also, she loves Kelsey so much, too. Actually, the whole CICU is very sick at the moment. All the beds are full and most of the kids are one to one nurse care. Last night a family lost their child and it was hard to watch knowing what's coming with Kelsey.

Another blessing today was receiving the photos of Kelsey and family taken yesterday. They are AMAZING!!!!! I can't believe they are already to view, here's the site to see Kelsey's photos http://tinysparrowfoundation.org/blog/ Make sure to click play to see all the wonderful pictures not just the ones you see right away. Thank you SO much Lidia and Jael.

God keeps blessing us over and over with Kelsey.

Patti

God Blessed Us With A Wonderful Day

We had a wonderfully sweet day with baby Kelsey!!! Andy and I didn't know what to expect today but I can tell you we didn't expect to see a happy, awake baby ALL day long. God blessed us with one more wonderful day with our baby girl. My sister flew in last night and Andy's mom and sister flew in this morning and they were all excited to see baby Kelsey sucking on her pacifier and looking around at everyone with her sweet big beautiful blue eyes. Andy and I both held her again today and enjoyed spending time with her and our family. God is good!!!

We were preparing our self to say good bye to our sweet Kelsey but she wasn't ready to go and God wasn't ready for her to leave. We are grateful but also struggling with how much we want them to do if and when her heart rate drops again. We were ready to say good by this morning and now looking into her sweet alert eyes, all that changes. Please continue to pray for us as we wait for God's will and timing with all of this. It's so hard to know and feel like you are making the right decision.

We were also blessed with a photographer who came to take Kelsey and The Up Family's picture. I don't have all her info with me at the hospital but she was a blessing from God. We got to get Kelsey all dressed up for pictures and had a wonderful time. The fact that Kelsey was so happy and alert was another blessing. We will have these pictures to treasure for years to come. More info to come about this wonderful gift.

I feel like all of you are on this roller coaster ride with us. Thanks you for continued prayers for Kelsey and our family. We are just taking one day at a time. Only God know what tomorrow holds for all of us but what ever that is I know he will be with us through it all.

Thank you for praying!!!!

Patti

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