Up for Anything

Sydney

2010-05-13T01:36:00.002-04:00

Sydney loves to be on stage. Here are a couple video clips of her singing at church tonight in a musical written by my brother Rob called Life School Musical.

The Light

2010-01-28T11:05:00.004-05:00

I was lying on the couch this morning while Hogan got ready for school and I was looking at the back door. I was thinking about the sun coming in though the door and how I could close the blinds to block it out and it would be so dark...then I could sleep more! It made me think about Jesus being the light, our light and do we treat him with blinds. We can shut the blinds and have no Jesus in our lives. We can block out all he is trying to do in our lives, because it might hurt a little to follow him? We can close the blinds just a little so only a little light filters into our lives. We get just as much of Jesus as we want, just enough to feel the love but not enough to feel compelled to obey him. Or do we open the blinds fully and let him in to shine in us and through us so that others can see the Light too. Open to all the joy, love, and pain that may come but also open for all the blessings God will bestow. Just a thought. I think it is painful to be open but the only way to truly follow Jesus!

Arise, Shine!

2009-11-04T22:10:00.003-05:00

"Arise, shine for your light has come, and the glory of the Lord rises upon you. See darkness covers the earth and thick is over the peoples, but the Lord rises upon you and his glory appears over you." Isaiah 60:1-2

This verse has always been special to me because my mother used to wake us up with it. She would fling up the shade and say, "arise, shine for thy light has come Isaiah 60:1" That was all I had ever read of the verse until tonight. Our worship minister brought this verse to us tonight during a devotional time, talking about times of depression and discourgement. Jesus is our light and he has come for us.

There are so many times when I feel the weight of this world and the things of this world pressing down. I have to remember that we are God's children, he is with us aalways and his glory will shine through us and bring his light to this dark world. Just as the sun rises each morning, God brings his light new to us each morning so that we can go out and be his light.

I want to shine God's light and I pray he will give me opportunities to share his love with the world.

Yo-yos and living sacrifices.

2009-08-22T00:50:00.002-04:00

It has been summer - and summer means no schedule, travel, relaxing by the pool, friends and fun. As I went through this summer it hit me that I felt like a yo-yo in my spiritual life. It is so easy to swing away from God in the midst of fun and sun - caught up in my own desires. Just as the one holding the yo-yo has to draw the yo-yo back up that is the way I feel God draws me back to him from my selfish ways.

Heading back to school means getting back on a schedule, Bible study on Tuesdays and church again on Wednesdays...more communion with God, intentional time with God that is so easy to slide away from in the summer. This week in Bible study we were in Romans. The verse "Therefore, I urge you, brothers, in view of God's mercy, to offer your bodies as living sacrifices, holy and pleasing to God—this is your spiritual[a] act of worship. Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind." Romans 12:1-2 The lady teaching asked if we knew the problem with living sacrifices? They crawl off the altar! That is what I feel like I have done and am back on the altar ready to offer my life as a living sacrifice for God to do with what he wants. I loved that picture of crawling off the altar. It is so easy to do, but also easy to crawl right back up there - ready to live for God.

Family

2009-06-16T23:11:00.002-04:00

I have thought a lot about family in recent weeks. A few weeks ago three friends of ours had parents die within a few days of each other. As we sat through each of these funerals we listened to the families share their memories, laughter, tears and love. Each family is different and it made me so appreciative to have mine. This last weekend we got to be with my aunt and uncle in Dallas and my cousin who spent much time at our house growing up. It was so much fun to think back on our memories - the good and the bad. We laughed so hard and we enjoyed watching the next generation of cousins playing together. My favorite line is what Hogan told his best friend when we got home. When asked what we did in Dallas he replied " we ate the whole time!" As you can guess we were with the Howard's. It was all about the taste! (and my Uncle Jerry is the king of BBQ!!!)

Tonight I went to my first meeting of a different kind of family - the Family Advisory Council at Children's Healtcare of Atlanta - Scottish Rite. This is a committee I was asked to be on. We are going to be working to "advance family-centered services and support through the NICU policies, practices and procedures". As I walked out of my meeting I was hit with a wave - an overwhelming wave of grief. I have been back up to the hospital several times and really do fine most of the time. Sp this hit me out of the blue! Maybe it was reliving our experiences there or maybe it is just a relief to be helping through my experience. It was so good to be able to call a grieving friend who is part of my family - the family of God. We can also laugh together, cry together and share memories but we can also share the knowledge and joy that parts of our family are in heaven. Whatever the family God has provided here on earth, it is such a comfort to know we have a family beyond this earth led by a heavenly father. We rest in the love of Jesus and the overwhelming power He has, yet he cares about every little detail of our lives.

Celebrate

2009-05-06T15:06:00.002-04:00

Today we celebrate one year since the end of Luke's life here on earth and the beginning of his life in heaven. It has been a year of tears, a year of missing but also a year to celebrate God's goodness. He provides all we need in every situation and we are so thankful. I just always come back to Psalm 139 which was one of my dad's favorites. "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made;your works are wonderful, I know that full well.My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." God created each one of us to be special and to be His children. We trust in the knowledge that God has a plan for our lives and we know it will be best for us. A friend recently sent a poem to me written by a young girl with cancer. It talks about how we need to take the time to sit and listen to the rain, to dance, to play with our kids, to help someone instead of hurrying on our way...life is too short to wish we had taken the time to do and appreciate the small things. I want to remember that in the busyness of each day.

New Baby...

2009-04-26T02:22:00.004-04:00

We got a new baby last week. Not the kind of baby I want, but the kind you get when you have a brief moment of insanity. You walk in the PetSmart to get tick medicine and see that it is adoption day. You hear your kids start begging to look at the puppies..."sure you can look". This leads to lots of begging because the little black one is so cute. Then you let them call their dad to see what he will say. His words? "What do you think?" Then you hear your voice answer I guess we could get him. Then with kids bouncing off the walls you race home to see if you have a crate and a gate then quickly call the pet rescue lady to see if she will hold the little black puppy and a few hours later and much paperwork later you have a new addition to the family. I had quite a few moments this week where I wondered how in the world I let this happen, but he is really cute and pretty good (if the kids remember to take him out) and I figured out he can make it from 12 am til 6:45 am without going out because his sleepy mom accidently didn't hear the alarm at 3 am! His name is Duke and he has had a hard life already so we are going to give him a loving home.

Praying

2009-03-29T14:51:00.002-04:00

This is a button that links to a website of a wonderful family. Their youngest child, Stellan should not have lived to be born according to the doctors. He was born five months ago totally healthy. Last weekend his heart went into SVT which is what it was doing in the womb. If you want to read their story and pray for Stellan that would be great.

I follow a lot of blogs but just now in following Stellan through this day to day, minute to minute struggle do I think I understand what some of you went through in following Luke's journey. I check the computer a couple times a day to see if there are changes and what to pray about. I don't know this family, but feel I do through their blog. I prayed for Stellan before he was born and was so thrilled to hear of the miracle God did in his life, that he was born and has had five healthy months. It is so exciting to see God answer prayers. Last Wednesday I just prayed and cried out to God while we were singing a beautiful song - "God is Here". I had a lot of burdens for friends that day and I laid them down that night to God. The song says "He will break the yoke and lift the heavy burdens". As we sang that song this morning I rejoiced in answered prayers. God is with us and ready to listen to us anytime we call on him. I recently heard a saying that I love; I would rather be in a storm with Jesus than anywhere else without him. God is here with us carrying us through every trial.

A fresh beginning.

2009-03-09T23:32:00.003-04:00

This time of year brings such promise, excitement and energy as spring bursts forth. I love this time of year - it just gives me joy in the new beginnings of life in the flowering trees, the new grass beginning to turn green and the warm sunshine. I am realizing I missed much of this last year as my days were spent inside the NICU. I drove past the flowers, trees and grass with my mind intent on getting to Luke and home to Hogan and Sydney. As I took Hogan to Science Olympiad this weekend I realized that last year I dropped him off and hurried up to be with Luke. This was the time Luke was here on this earth, amidst the promise of new beginnings. It brings tears as well as joy to think he is in heaven where the excitement and energy of spring is probably always there.

Just before Luke was born, Sydney prayed to accept Jesus as her Savior and Lord. We waited for her to be baptized until last week. John Conrad baptized her and he also did Luke's funeral service. He shared with Sydney that last Sunday (March 1st) was St. David's day which is celebrated in Wales (our pastor is from there). It is celebrated with the wearing of a dafodil. We will always remember Sydney's "new birth" in Christ with the newness of spring in the dafodil.

It is easy to get caught up in the joy and sunshine until you turn on the news or talk to a friend. Then I am reminded of all the "stuff" of this world...finances, cancer, death, divorce, job-loss, storms...but in the midst of the dark things there is one rock we can cling to who can bring us a fresh new beginning no matter how dark our lives get.

"Jesus Christ is the same yesterday and today and forever." Hebrews 8:13

"The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song." Psalm 28:7

"Majestic"

2009-02-24T21:35:00.006-05:00

That is just the only word I could think of as I looked at the breathtaking views we had each day of skiing. I just love the mountains and the snow. I really hope there are mountains in heaven. Only God could create somthing so spectacular. Of course, being the anniversary of Luke's birth he was on my mind so much last week. A really neat thing happened as we were renting our skiis. They have stickers on them where they write your name so you don't lose your skiis at the resort. The skiis the guy got out for me still had a name on the sticker and it was Luke. I had to take a picture so everyone could see. It was goood to be away and to be together. I did just fine until Saturday. On the plane home there were at least three babies. One sitting right behind us who was about my favorite age - 5 months old and a bald headed baby boy in a sweet little sleeper. Then we got home and some people came to look at our house ( we listed it on Craig's list to see what would happen because we want to move but are waiting for God's guidance)and they had a darling little 5 month old boy. Then Eric and I watched an old movie that was sad and had a baby in it. I ended the night in tears because there just seemed to be babies everywhere I turned that day. It really made me want a baby so badly even though I think God is closing that door for us. I felt much better having cried and press on with life.

Happy Birthday Luke!

2009-02-20T09:57:00.002-05:00

We were talking last night about how long it seems since this time last year... the beginning of our short time with Luke here on earth. We are out skiing in Salt Lake City and enjoying some family time together. I'll post some pictures tomorrow! We are just thanking God for his goodness and blessings here in these beautiful mountains!

Where did January go?

2009-01-31T00:48:00.001-05:00

I can't believe January is done. We have been doing the usual running the kids to karate, basketball, guitar, piano, broadway babies and church. I am feeling a little full of emotion at this time as I think back on last year. I was trying so hard to prepare for Luke. Trying to get the house ready, his things ready, mentally preparing to have a baby after quite a few years...if I had only known I would have sat down more with him and just cherished the moments while he was still inside me. Two neat things have happened this month. One day I received a letter from Scottish-Rite hospital where Luke was. They asked me to come share Luke's story at a lunch with hospital staff to let them know how our experience had gone. I hope to be able to share how God worked in us during that time too. Also that day I received an email from a lady who had come across our blog in following up on some of Luke's charts. She read his story and emailed me to say how thankful she was and how touched she was by what she read. Her 19 year-old son died last year in June just after Luke. God is still using his story. I continue to enjoy my time with two of Luke's nurses. Their friendships will always be special to me because they knew Luke and took care of him when I couldn't.

My friend Lynne shared this verse with me this week. 2 Corinthians 1:3-7 "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort."

I love that God does comfort us in our sufferings and gives us his words and our own stories of how he has worked in our lives so that we can help others in their sufferings.

Oh how they change!

2009-01-09T20:20:00.006-05:00

When we were in Kansas City over Christmas we took the kids by Crown Center on the way home from the Plaza lights. They love to climb on these big wooden vehicles they have out by the ice rink. I was taking the pictures off my camera and went back a few years to some old climbing adventures. They have changed to much! Here are Caleb, Hogan, Sarah, Sydney and Ben - 2003 and 2008.

Laughter is the best medicine!

2009-01-04T01:28:00.002-05:00

I have always heard that saying, but really lived it this week. We all headed to my mom's in Kansas City. Four adults, five kids, one dog and lots of chaos. We had food, movies, friends. loud music, games, food, toys, fighting, food, tv and lots of laughter. We always seem to laugh when we are together. Eric even said Rob's laugh sounded like my dad. We laughed over the kids, laughed at each other, laughed over cards and just had a lot of fun. It really lifted my spirits which hadn't been very merry. I am thankful God gave us humor and the ability to laugh. It just makes the world easier!

Blessings

2008-12-21T22:01:00.003-05:00

I feel like I have been "running" for a week or two solid and I haven't even been to the gym! I have gotten so tied up with too many committments that I found myself very edgy today. I had absolutely NO "merry" in my Merry Christmas so I ran on to one more event, a concert at our church by a guy we all love to listen to. His name is JohnWaller and he talked tonight and sang about blessings. He told how he and his family had just spoken a blessing over their new son and then we sang that blessing. It made me think of all the ways God blesses us and how we need to ask him to bless us. We have received so many blessings this year. I know God blessed us so much through Luke's life. We continue to feel blessed to have so many friends and so much family but tonight I was reminded that we can also be a blessing to others and the way I was feeling today I definitely wasn't a blessing. It was so good to sit, listen, worship and connect with God and ask him to make me a blessing this year. I left with such a better attitude and a calmer heart. I pray this year I can slow down and remember to be a blessing.

Psalm 34:1 "I will extol the Lord at all times; his praise will always be on my lips."

P.S. This is one of the pictures we took while trying to get a picture for our Christmas card - only the most photogenic one isn't looking right!

a lamb...

2008-12-11T00:17:00.002-05:00

This week Sydney and I are in the Living Christmas Tree at our church. It is a big commitment (7 shows in 5 days) but always so rewarding. Sydney is just beside herself that she is finally in it. She is on the front row of the children's song and does her actions so well. She just loves to perform. She is also in the biblical part, but I haven't seen her yet since she chose to walk with her friends instead of her mom! She is SO independent at 7 years old.

Each night they put Jesus on the cross as we sing this beautiful song, "It took a Lamb". It just makes Jesus so real. First to see this innocent baby then seeing the same innocent man on the cross brings tears every night. It seems like I would get used to seeing it every night, but every night I find myself in tears. To think Jesus endured so much just to save each one of us is overwhelming. In the midst of all the hubub of the holiday season it is nice to have a visual reminder of the gift God gave us in his Son and the way he gave his life for us. I pray you will be blessed this Christmas season with some time to reflect on the gift of Jesus - an innocent lamb sacrificed so we can be forgiven.

Plugged In

2008-11-18T00:21:00.002-05:00

There's an outlet in my bathroom at my Mom's house that when I plug in my hair straightener and try to use it, the plug always falls out. The connection is just loose from years of plugging things in and pulling plugs out. It is really frustrating when you want to keep your appliance plugged in and it keeps falling out. I was just sitting here listening to Mercy Me and thinking about God in that way. No matter how hard I try to stay "plugged in" sometimes I just get "pulled out" by life. I guess that is just a daily struggle in the world we live in (at least in mine!). I want my plug to stay in tight so that I am constantly plugged in to God. I pray often that he will fill me with such a desire for him that the earthly pulls can't make my connection loose. I am thankful that God desires a relationship with us and keeps pulling us back in when we fall out. He is just like that electricity - always on - just waiting for us to plug into him so he can fill us with his strength, spirit, power and love.

Ephesians 3:16-18 "I pray that out of his glorious riches he may strengthen you with power through his Spirit in you inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power together with all the saints to grasp how wide and long and high and deep is the love of Christ."

Thirsty?

2008-11-06T00:40:00.003-05:00

I can remember the two best Diet Cokes I have ever had. You may think this is weird, but if you know me I always have a drink near me. Usually Diet Coke, water or tea. My first (best) DC was in New York City after a LONG day of walking and sightseeing. I remember how thirsty I was as we walked into the hotel and how good that DC was. My second (best) DC was at the end of the second day of the Susan G. Komen 3-day 60 mile walk for breast cancer. My friends and I walked up a hill at the end the 23rd mile of the day and there at the top was a Quick Trip. Of course we detoured in for a much needed DC to quench our thirst. In a recent sermon the pastor talked about Matthew 5:13 where Jesus tells us we are the salt of the earth. The pastor talked about how salt made us feel - thirsty. (I know because Mexican food is salty and I always need more DC) He shared how we should make people thirsty for God if we are truly being the salt of the earth. Our very lives should make people thirsty so we can share how God can quench that thirst over and over again no matter how thirsty we get. He satisfies our thirst more than anything here on earth can. He is our living water. I want to be thirsty for God and I want to make others thirsty for more than Diet Coke!

I'm back...

2008-10-22T15:38:00.008-04:00

Sorry it has been so long. I've let life get me too busy and we were gone a week on vacation! We have had a few monumental things happen. Hogan got all his hair cut off and Sydney has lost both her front teeth. Both of them look so different now! We had a great time as a family in Orlando. We did one day at Magic Kingdom, one day at Wet and Wild (where I screamed on most rides - they were crazy, scary slides!) and one day at the Nick Hotel (seriously overpriced room, but well worth watching the kids have so much fun. We even got slimed.) It was good to get away. I have also been able to get together with Luke's nurse from Scottish-Rite. It was really good to connect with her again, I enjoy her friendship. She was our weekend nurse and we became really close talking each Saturday and Sunday. I thank God that he gave me two friends in the nurses who took care of Luke. It is good to be able to talk to them since they knew Luke.

While in Tampa we went to church with Eric's sister. I loved their church and their pastor(http://www.idlewild.org/). He used a verse I loved. Micah 6:8 " And what does the Lord require of you? To act justly and to love mercy and to walk humbly with your God." He talked about living compartmentalized lives - do we do or act certain ways around certain people or are we an open book, living for Jesus everday in all we do? Do we wear masks everyday and not just at Halloween? Does what we do on Friday match what we do on Sunday? God requires so little of us yet it can seem monumental in this earthly world. He just wants us to walk humbly with him. The pastor defined humbly or humility as total dependence on God. Walking with God through the big and the small in life, the good and the bad, the mountains and the valleys. We may not live perfect lives, but as believers we are forgiven in our walk with our God.

Broken

2008-09-26T03:16:00.002-04:00

Well, I did it tonight. I broke my bowl. This idea all began from a blog I follow of another mother who lost a baby. Back in May my brother's family was here and I was reading the blog on my computer one night with Kirsten. This girl told how she had read in a grief book that it would be good therapy to break a piece of pottery. She felt led to break a pitcher one night and God really touched her as she put it back together... Of course, within the week my sister (in-law) Kirsten had bought me a bowl to break when I was ready, but I wasn't ready. I put it on the fridge in the laundry room and have looked at it often, but haven't felt the need to break it. Tonight I was overwhelmed as I lay sleepless in bed, praying, that I had to get up and break the bowl. With many tears, I sat outside and held the bowl for a long time. It was really pretty. It felt good to hold it whole, but I knew I needed to break it. Memories of Luke played in my head. I thanked God for his life and the journey we have gone through. Joy, tears, trust, faith, total surrender. I felt God saying "I need all of you - broken" - I thought of Jesus and how he gave his body to be broken on the cross for all of us - it was then that I could break the bowl. (Of course it didn't break when I threw it down and it made a really loud noise at 1a.m. so I went into the shop and used a hammer. Doesn't God always bring a smile in the midst of tears!) I picked up the pieces and carefully carried them inside. I began to glue them back together thinking of how God puts us back together. We may still bear the scars from our brokeness but we can be whole again. I love my bowl even more now. I know it is in the brokeness that God can flow through us and use us for His purpose. My bowl sits in my china cabinet now so I can see it daily and thank God for using us, taking care of us and most of all for loving us.

Psalm 147 :1-5 "Praise the Lord. How good to sing praises to our God! How delightful and how fitting...He heals the brokenhearted and bandages their wounds. He counts the stars and calls them all by name. How great is our Lord! His power is absolute! His understanding is beyond comprehension!"

I like to eat...

2008-09-12T23:11:00.005-04:00

I called my brother Rob, this week to see what to order at the Thai restaurant I was going to. A lot of our conversations revolve around food and cooking. We both love to eat and experiment. My dad and I loved to talk about food too and now I find myself talking about what I have cooked with his brother Jerry whenever I call him. As I thought about how important food is to me - it made me think of God in the same way. Do I hunger for God? Do I crave God like I crave Mexican food and chocolate? I have found this year that the closer I get to God the more I hunger for him and desire fellowship with him. I find myself going to him many times a day and he can satisfy me much more than chips-n-salsa can!!! I live to eat and I want to live for God!

"Blessed are they that hunger and thirst after righteousness: for they shall be filled."

Matthew 5:6

"You satisfy me more than the richest feast.I will praise you with songs of joy." Psalm 63:5

Prayer

2008-08-26T16:15:00.006-04:00

I find myself so much more dedicated to prayer since my time with Luke. I tend to have an on-going conversation with God a lot of days. A lot of the time it is because there are so many people I feel led to pray for. I also take the words "I'll pray for you" so much more to heart as I know the power of prayer when you are in a difficult situation. I am so thankful to have a God who cares to listen to our desires, needs, concerns and wants. This morning in Bible study the lady spoke of relationship not religion. Relationship is what we will have when we constantly converse with God and also take time to listen to him. I am trying hard to listen to him on the desire for a baby. We are all left with a desire for another baby but can't have any more of our own. We haven't yet felt led to any certain adoption agency. We did feel led in July to write a letter to a birthmother in the area who was looking for a family for her baby. She chose another family which we know was God's will. (We had been praying whatever was God's will in this situation.) We are still open for whatever God has in store for us whether it is to give us the closure that we will just be a family of four here on earth or open a door for a baby for us. We are just praying and listening.

Here is a picture of Hogan Sydney and me at the wedding in KC. Hogan was not thrilled to wear a tux, but Sydney was more than thrilled with her dress! It was on her birthday and made for a great party. She caught the bouquet and danced the entire night. Hogan was just happy playing Sydney's new Nintendo DS! It was really fun to be at a wedding and not a funeral! Our family has had too many of those this past year.

Dependence

2008-08-09T23:14:00.002-04:00

"Are we living at such a level of human dependence on Jesus Christ that His life is being exhibited moment by moment in us?"

That question really stuck with me tonight as I read "Utmost for His Highest". I was talking this week with my friend about depending on God and how easy it is in situations of great need. How comforting it is to know God is there, supporting us and caring for us. That he just draws us so close in difficult times that we hunger for him. I think the farther we get away from these times the easier it is to depend less on God. I am trying to continue to depend on God with all my life (though it does get difficult when playing referee with my kids. I know I don't always glorify God in these times, but I guess that is the human side of me!) and hunger for him as much as I did when walking through Luke's life. We just don't know who is watching us and who might see Jesus in us in our every day activities. I know God uses us through our times of crisis. Even when we are hurting we can be a witness to others. My friend is already hearing of how others see her faith as she depends on God while she takes care of her husband with cancer. It felt so good to us to hear the stories of people who were touched through Luke's life. Those times are easy for me - I want to hunger and depend on God in the every day, moment to moment stuff. That's my goal this year.

We celebrated Hogan's 11th birthday this week with a sleepover/swimming/campout party. There were six boys who went from riding ATVs to driving the golfcart to swimming then back to ATVs...all night long! Finally when it was time to campout in the tent they lasted about 45 minutes and came in because they were too hot! At least they had fun! Next week we will celebrate Sydney's 7th birthday. Her party will have to wait a week because all the kids (Caleb, Sarah, Ben, Hogan and Sydney) will be in a wedding in KC on her birthday! I'm sure Kirsten will get some great pictures. Who needs to carry a camera when you have a sister-in-law with camera and video ready to shoot!

Luke's Garden

2008-07-24T21:10:00.004-04:00

I don't know why it has taken me so long to put these pictures on. After Luke died a lot of people got us plants to make a garden for Luke. I took these pictures soon after we got it all in. The Texas girls bought a couple rose bushes, (one yellow rose of Texas bush!) a peony and a hydrangea. Kirsten's mom got some beautiful daylillies. The Larsen and Goerz families got a tea olive bush, gardenia (my favorite) and some forget-me-nots. Our parents stargazer lillies that were at the funeral are planted in the garden and an azalea and a hydrangea from Delta. It has been so fun watering and caring for this little garden. The roses have been beautiful and Kirsten took an award-winning picture one weekend - water droplets and all, but I can't seem to get it to load on the blog. Maybe she will put it on! Anyway, thank you to all who provided the plants they are beautiful and bringing enjoyment to us. This week the kids and I made a stone for the garden. It is now sticking among the plants and looks great. This picture is the stone in the drying process.

We are all still doing well. We have almost made it through our summer - it has gone really quickly! We are going to get one more day in at Six Flags tomorrow. Last time we were there my brother and I were riding the scariest ride I have ever been on - Acrophobia. You are in a chair with just a harness across your chest. The ride takes you 200 feet in the air and drops you at 62 mph. As we were getting ready to go up Rob checked his harness and said "this is the definition of trust". This was the only ride I have ever been on that took the scream out of my mouth! As I walked away on shakey legs I thought more about the trust we had in this seat and harness that held us on the ride. Sometimes we are faced with situations in life where we have to trust God to be our safety harnesses. I am thankful to have lived through a few but have never had the shakey feeling I did getting off that ride. Putting my trust in God is so much more secure and goes beyond all earthly measures of feeling. I am thankful to have a Father who holds us securely in His arms in times of trouble and in whom we can place our trust.

Family

2008-07-13T22:38:00.003-04:00

This is a family tradition - the Fourth of July parade in Peachtree City. As you can see I did a little tie-dyeing this year! We love to look obnoxious with our spirit - the more red, white and blue the better. One year we may even be in the parade. Who knows what we will represent but the float will be awesome. Every year we add more ideas to our list for someday!

We still miss Luke and always will. As far as grieving, I think I grieved for Luke so much while he was alive that I am doing well right now. As far as the kids and Eric, it is hitting a little more lately. We just try to support each other, cry and talk about it. That seems to help. We pray as a family for God's direction for us and are ready for where he leads.

Today some beautiful little girls who live in an orphanage in Haiti sang at church about needing nothing but the Lord. They truly have nothing but Jesus. It was so moving to listen to and think about what they were singing. We truly need nothing more in this world than Jesus. He can take care of our every need and is our hope for heaven. I strive daily to put God first in all I do and to be bold enough to share him with others. It doesn't always work that way. The stuff of life always creeps in to busy up my day. But each day I will wake up and do my best to start with God and his desires for my life.

Life

2008-07-02T01:01:00.003-04:00

God is so good to give us glimpses of his plan. This week I re-connected with one our nurses at Piedmont up in the city. (Luke was born at Piedmont - Fayette and then transferred to Piedmont in the city then moved to Children's Healthcare of Atlanta). I often wondered why so many hospitals. I think now one of the reasons was so we could meet Teri. She emailed me this week to say how sad she was over Luke's death and to share her own story with me. Her 17 year-old son died just a few days after Luke. He was involved in a car accident on Mother's Day. She had her son so much longer and he was taken so suddenly. I am so sad for her. Who knew when we met in February that we would both lose our sons a few months later. I am thankful God allowed us to bond over Luke. It will be good to share grief with her and also good to talk about Luke. She was one person who really knew him when he was awake and interacting. She always told me "there is just something special about him when I look into his eyes". I shared with her how my brother's pastor used bubbles in his Easter sermon to talk about our lives. Some last just for a second and some much longer. Each one is precious no matter how long they are here and each one special and unique. I will always think about that when I see bubbles and think about Luke's short little life that was so big in its impact. Tonight my nephew Ben was blowing bubbles and watching them rise high in the air. He said they were flying up to heaven! Heaven is so real to all of and seems so close now that Luke is there.

Tears of Joy

2008-06-23T02:04:00.003-04:00

I have to thank my brother Rob and sister-in-law Kirsten for the beautiful video of Luke's life. They are such wonderfully talented people as well as tremendous supports for all of us.

I too watched the beautiful video of Luke with tears streaming down my face - tears of joy for the beautiful little boy God entrusted to us for a short time. As I was crying and watching Sydney said, "You know he is in a better place, Mommy". I think that is where we all are. We miss Luke but know he is in a much better way and place. Tonight as we were going to bed Sydney said," I just wish Luke could have stayed here. I really wanted a baby in our own family to take care of." We talked some more about God's plans and how this one would have to remain God's plan as we can't have any more children of our own. I know this is all difficult for a six-year-old to understand, good thing ours is six going on 16! We do all love babies and had so much fun holding my cousin's baby Cooper last week in Kansas City. He is a darling eight-month old chunk! I think the mothering nature is like that of a shepherd. In a devotional book I was reading by Max Lucado he talks about "God ... the waiting Father, the caring Shepherd in search of his lamb. His legs are scratched, his feet are sore and his eyes are burning. He scales the cliffs and traverses the fields. He explores the caves. He cups his hands to his mouth and calls into the canyon. And the name he call is yours... The message is simple: God gave up his Son in order to rescue all his sons and daughters." What a picture of God searching for each one of us to be his children. It is so important to know him and listen to his voice.
I pray for God to continue using us as a family, I pray we will be still and listen to his voice, I pray God will continue growing our faith and keep us close beside him - our Shepherd.

remembering Luke

2008-06-15T15:15:00.002-04:00

Blessed Assurance

2008-06-14T00:26:00.002-04:00

"Blessed Assurance, Jesus is mine, Oh what a foretaste of Glory divine." I have been blessed with assurance this week from God and a glimpse of Glory. As always I tend to "think" about life and Luke more on Sundays and last Sunday I was really struggling with Luke's life and death. I didn't feel well Sunday night and went to bed early (way before midnight! - early for me) but ended up being up off and on all night. I did a lot of praying that God would take this struggle from me with all the "what-ifs" going through my mind. Sometime in the night I had a very vivid image of my dad, who died nine years ago, holding Luke - a healthy Luke. He was standing with both of my grandmothers and Eric's grandfather, all whom have died in the last year. It was a very comforting image. I also relived each of the dreams I had while Luke was alive. In each of the dreams Luke was laughing and pulling his breathing tube out and getting away from me like it was a game. I woke up Monday feeling quite a weight lifted from me. I felt the complete assurance that Luke was okay and where he was supposed to be from the beginning. I know beyond a shadow of a doubt that Luke came for a purpose and God has shown me Luke has received his reward in heaven. I have been filled with a peace this week that only God can give.

Peace was good to have this week since it was Vacation Bible School week. It was such a fun week of teaching, crafting, laughing and of course eating! It is always tiring and hectic at times even a little scary since after seven years of teaching together my friend Amy and I realized we were very organized this year - something new for each of us! It is always so neat to hear the kids singing about God and being excited about what they are learning. I heard at least 26 children accepted Jesus as their Savior. That makes it all the more exciting!

Thank you all who continue to pray for our family. I am already praying for where God will use us next. We are all healing and doing well. We continue to be blessed by the stories we hear of how Luke's story has touched lives. Thank you for sharing. I continue to write thank you notes and know I have missed some of you. I appreciate everything you have done to help.

If you get a chance to read Psalm 145, that is what I was drawn to this week.

Change

2008-06-06T01:20:00.002-04:00

I am not one to make big changes quickly. Even though I like to be spontaneous in the day-to-day, I like to think things over for a while...like moving to Georgia. Eric likes to tell that I came down I-70 making fingernail marks as I held on to the highway, but I now call Georgia home. We don't have family here but God has provided us with His family in our Christian friends here. Having Luke was a big change I had to think over a while. I was okay with two children but when we got pregnant I had to get my mind around three. I was so ready for our family to grow and ready to love a new little baby. I now have to get my mind back around our family of four. We were five for such a brief moment in time - but I was ready for that. We all work not to forget Luke. Hogan put a picture of him on my phone today so I won't forget him. I continue to walk back through each of his days as I imprint each moment into my mind. God continues to bless us each day some with laughter, some with tears, some with questions but mostly with assurance. How could we live without God's assurance that He is with us each step of the way. In Utmost for His Highest it says, "When we realize how feeble we are in facing difficulties, the difficulties become like giants, we become like grasshoppers, and God seems to be nonexistent. But remember God's assurance to us - 'I will never...forsake you.'" No matter what God is with us and carrying us. I was recently talking with a friend walking through a very difficult time and we talked about how when we know "we can't do it" God always brings us through with strength and peace for every moment.

Today is one month without Luke on this earth. It has been a month of change. Death, a funeral, going back to a "normal" life, school ending, travel, a haircut (I had a big haircut this week). My hairdresser was hesitant to do such a drastic cut - too much change at once, but I laughed and said let's just do it! Change can seem hard but usually ends up good and it has been especially good for Luke because he no longer is confined to his struggles here on earth.

Ecclesiastes 3:1-4 "There is a time for everything, and a season for every activity under heaven: a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance."

Hungry

2008-05-31T12:09:00.002-04:00

A couple of days ago I took Sydney to my brother's house so she could be with her "twin". That is what she and Sarah are calling themselves lately. (They couldn't look more different so it is really cute!) Of course I was hungry for our ususal - SATCO - San Antonio Taco Co. So after a huge healthy lunch of wings and chips-n-cheese I headed back to Atlanta. As I sat down on the plane I realized I was still hungry not for food but for God's word. I opened to Revelation as I wanted to read a little about heaven. Even though I didn't understand a lot of the things I read it was comforting and there in the midst more reassurance that God made Luke just like He wanted. Revelation 4:11 " You are worthy, our Lord and God, to receive glory and honor and power, for you created all things, and by your will they were created and have their being." As I know I will for a while I continue to go back over each day of his life and each little part of him. I loved him so much and miss him so much even though it was a tough life for all of us, especially him. God is providing healing tears and so much support from friends.

Faith

2008-05-24T09:12:00.002-04:00

I talked with some friends last week about how at night my mind wanders back over all Luke went through and the decisions we made and was it all right. We all agreed that when we are finally quiet and trying to go to sleep is the time we are attacked the most. I have been able to get through each night with tears, but turning it all over to God. I have to go back through His perfect plan. He chose the exact number of days Luke was to be here on this earth and we had nothing to do with that. I am finding more peace as I sleep. I have faith that God led us through Luke's life exactly the way he had planned and He will lead us through his death with His comfort and peace. I am reading a book on grieving that my brother brought me written by his friends David and Nancy Guthrie. I really like what they say on faith. "This is what real faith is - a gift of God that enables you to keep loving and following him even when His plan is not yours, even when death has taken away the one you love. God promises that His gift of grace will be enough."

Hebrews 11:1 " Now faith is being sure of what we hope for and certain of what we do not see."

New Club

2008-05-22T01:11:00.002-04:00

I sit crying at my computer as I read other mom's blogs and watch video after video of babies who had such short little lives. I just emailed my sister-in-law that I feel like I have joined a new club. There seem to be so many of us out there who have lost a baby. Isn't is wonderful that we can share the pain and know there are people out there who know exactly how we feel. I looked back through Luke's pictures tonight and just thought "how sick he was". When I was concentrating on each day and the struggles each day brought it was hard to see the whole picture. As Eric has said, Luke seemed imperfect in this world but God created him perfect. That is how he is now in heaven. God who creates also provides. He provides laughter in the midst of sadness and joy in my tears. I know he has linked me to other stories to help me grieve and experience the comfort others in the same situation. I like this poem a friend shared with me the other day.

"A Pair of Shoes"

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.
Author unknown

2008-05-19T17:16:00.002-04:00

I was sailing along for a few days wondering if I was all right because I didn't feel like I was grieving then there it came again - the tears right at the surface, the overwhelming sadness, the hole that is left wanting to be filled with a baby, my baby. In the midst of all these feelings I do still find peace that God is good and he is with me still. I know God has taught me many things through this journey. One thing I know is he has taught me once again total surrender. I tend to be an "I can do it" person. According to my mom that has been my personality sinceI was little! With Luke there was nothing I could do but turn the whole situation over to God. I would always try to take it back only to have him remind me I could not do it myself. I know with my grief I will also have to just turn it over to God who will comfort me and remind me that my sweet little baby who had so many tubes and medications is free from all that and enjoying his heavenly home. That in itself brings comfort to know he is not suffering anymore.

I have put in the program from Luke's service because I love our favorite picture in black and white.

email

2008-05-17T18:02:00.002-04:00

I thought I would post my email so you could email me if you want. I would love to keep up with you personally. You can reach me at seheim@bellsouth.net.

So Short.

2008-05-17T00:50:00.003-04:00

I read back through all our entries in the blog tonight and am shocked to feel (from reading) how quickly Luke's life went. When I was living all this it seemed unending. I so badly wanted to know where we were heading when we were going through all this and now am so thankful God didn't show me. We were able to live each day to the fullest whether good or bad with Luke. We truly just took it one day at a time. I'm glad it seemed long to us because we were only going to have Luke here for a short time. I am doing okay with my grieving. I miss that sweet little boy I knew here on earth, but am so thrilled for him that he is free from the struggles of this world. I know there will still be tears in fact they are usually right there at the surface but I do feel the peace of God which does surpass ALL understanding. I have the hope that I will be with Luke again and the knowledge that God has orchestrated his whole little short life.

Lamentations 3:22 "Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning, great is your faithfulness."

2008-05-14T16:26:00.002-04:00

Our family has been out of town for a few days. It has been a good time to re-connect, reflect and rest. Sunday was a really hard day. Most everyone had left and the loss of Luke was really heavy on me. I have had a routine for the last 11 weeks. I would get my kids off to school and then head right to the hospital. I would stay with Luke until late afternoon then go home to eat dinner with our family and be with Hogan and Sydney for the evening. On Sundays we would go to church then head up to the hospital. This last Sunday was the first break from that routine and it really hit me he is gone. Tears help and heal and I know God brings comfort. As a friend reminded us, Jesus wept. He felt grief just as we do so we will cry when we need to and hold on to the memory of Luke.

Celebration

2008-05-11T00:32:00.002-04:00

We were just overwhelmed by the outpouring of love from so many people these past few days. So many of you came Thursday night to share our tears and many more on Friday to celebrate Luke's life. I will never forget the endless line of people behind us as we walked across the street to the cemetary. God filled us with peace that truly passes all understanding Friday as we said good-bye to the little body we knew here on earth. I felt God give me a glimpse of Luke in heaven and the excitement he will feel to show us his heavenly home someday. I shed many tears but had much laughter with our family who came to cry with us, laugh with us, help and comfort us. We will never be able to thank everyone enough. I hope someday to be able to give back to you a little of what has been given to us.

I have been so attached to this blog and look forward to your comments. I may have to blog more from time to time. It may help me feel closer to Luke. Please continue to share his story. We know his life had a purpose here on earth and his purpose has been fulfilled. I pray his life will continue reflect God's goodness and love.

Luke's Service

2008-05-07T21:26:00.002-04:00

We will have a visitation tomorrow night (Thursday) from 6-8 p.m. at Mowell's Funeral Home in Fayetteville. Friday at 2 p.m. we will have a service at New Hope Baptist Church in Fayetteville. Luke will be buried across from the church in the New Hope cemetary.

From Sydney

2008-05-07T09:15:00.002-04:00

The thing we have left here on earth of Luke is his pictures and his love. All the rest of his body is in heaven with God. Hogan and I got to keep his little hospital bands and we got his little footprints and we got to keep his blankets. Mommy almost wrapped Luke up in the one I got and I really love that blanket. This is my first time writing on the blog but my Mom is actually typing it because it would take a long time for me to do it. I have love for all of you and you have done a lot for my family and that's nice. you all are a blessing to our family.
my favorite verse is proverbs 3:5/6 trust in the lord with all your heart and lean not on your own understanding in all your ways acknowledge him and he shall direct your path. you all have been really really really really nice. I dont know how to explain how nice you all have been.

Thanks

2008-05-07T08:12:00.002-04:00

We thank God for the blessing he has given us in Luke and his journey through his short life. We loved him so much and are thankful he is free from his struggle to breathe, the many tubes, the pain and swelling. We know he is free and healthy in heaven with our Heavenly Father, who created him so special. Yesterday may have been the hardest day of my life, and one I would never trade. I was filled with God's peace and re-assurance that Luke's life would be in heaven. He answered every one of our prayers. He is so good. He allowed me every thing I needed for closure. I even got to bathe him and dress him, something I really wanted to do. I am thankful the nurses have let me be very "hands-on" these last 11 weeks. We are all filled with sadness and many tears but joyful in Luke's victory over this life.

I can't begin to thank every one of you who have followed Luke's story. Your encouragement, love and prayers have been so uplifting to me. God blessed us with you and your words. So many of you we don't even know. I hope someday to meet some of you. (Jane, I will be coming to TX!) We started this blog to share information on Luke but it ended up a wonderful blessing for us in such a hard time. Friends have cared for us so much. We have had food now for 11 weeks. It was so wonderful to come home from a long day at the hospital and not have to plan dinner. Sometimes my mind just couldn't think that much. We have had monetary help with gas - it was an 80 mile round trip each day to the hospital. We have had so many encouraging cards. We have had help from our wonderful parents. God has provided in every way through our wonderful Christian family. We thank every one of you. I am sorry I have been lax in my thank you not writing. I am not a list maker and have lost track of who I have thanked. If you get two - sorry!

As Hogan says - to sum it all up, I am feeling very thankful for each of of you, to God for the blessing of Luke, his answers to our prayers, and his goodness in giving us this wonderful experience.

Psalm 9:1-2 "I will praise you, O LORD, with all my heart; I will tell of all your wonders. I will be glad and rejoice in you; I will sing praise to your name, O Most High.

Alot of fight in him.

2008-05-06T18:24:00.002-04:00

Our little Luke fought longer than ANY of his doctors could believe. They did everything HUMANLY possible to help him but in the end only God could heal him. God made him like he was for his purpose & we wouldn't change a thing if we had to do this all over again. We will have more details on the service coming soon, the intent is to have a service @ Moel's in Fayetteville on Thursday night & his funeral at our church, New Hope Baptist Church on Friday sometime. Susan & I request that instead of flowers that if you feel led to send something, to please donate to the children's ministry at New Hope or to our Nigerian Mission Project which provides medical care & water to our friends in Nigeria, just designate one or the other. You can send a check payable to New Hope Baptist Church the website is www.newhopebc.org & the address is 551 New Hope Rd. Fayetteville, Ga. 30214 & just put a note in the memo. You all have helped carry us through this tough time with your kind words & prayers. We will have more updates to follow on the service times as we can. Love you all....Eric.

There is only one way to heaven & that is through Jesus Christ, Luke will be waiting for us when we get there one day. We find great hope that we will be with him then & that he will be running in Heaven (and breathing). We hope to see all of you there one day as well.

John 3:16 For God so love the world that he gave his only begotten son, so those that believe in him shall not perish, but have everlasting life.

Luke was healed today

2008-05-06T15:17:00.003-04:00

God choose to heal Luke today and he is now with Him in heaven - whole and healthy and breathing freely. We praise God for His goodness and mercy. We will post more later.

New Typer

2008-05-05T20:54:00.004-04:00

Hi. I am Luke's big brother, Hogan. My mom said I can type the blog tonight. Luke didn't have a good day today. His vent settings went back to where we started last week: high. His co2 remains high. His oxygen was at 100% to keep him oxygenating well. One good thing is his chest x-ray looked better today. My nana & papa came in today. They are going to let my grandma go home. She has been here since the day Luke was born. She has helped in so many ways I can't tell you. Here is some info about me. I am in 4th grade and I'm 10. I am a black belt in karate. Today was the county math bowl. I didn't win. I have a dog named Sugar. She is a yellow lab. She is 1 year old. She is HUGE for a puppy. I'm going to sum this up. Luke needs a lot of prayer to help him through this battle. I am baptized and believe in the Lord. If you don't believe in the Lord I suggest you try going to church and see how graceful and beautiful being a member of the Lord's family is. I am not afraid of dying because I know I am going to Heaven. Pray for Luke!

Amazing God

2008-05-04T22:51:00.006-04:00

Luke was down to 3.96 kilos today. He didn't look much less swollen but evidently is still losing fluid. He still has a lot to lose. Today the prayer request is for his lungs. He had some collapsing on the lower right lobe. This is not new. It just seems to shift around. Some days the lungs are fully inflated and some days there is atelectisis (collapsing). It was sounding a little better by the time we left today. Although his lungs never sound very good. His co2 was better today. Thanks for the prayers. He is still in such a better place than a couple weeks ago. We just need to continue to make progress. My favorite place is still sitting next to him holding his hand

We sang a song in church today that really hit me - "Indescribable". When I think back on all he has brought Luke through and all the ways he is working in other peoples lives all over the world I am unable to imagine that kind of power. It is indescribable. It hit me the other day that is was soon after the doctor had told us that after this long most likely the swelling wouldn't come off Luke - he began to lose the swelling. It was like God answered our prayers after it would be evident it was only his power of healing that would bring it off. We are awestruck at how he continues to work in Luke's life and touch others through this little boy. We serve such an amazing God. He created this whole earth and each one of us in his image so we can love him, accept him and live with him forever. He knows each one of us by name and cares about every part of our lives. You are amazing God!

Indescribable, uncontainable,You placed the stars in the sky and You know them by name You are amazing God

All powerful, untamable, Awestruck we fall to our knees as we humbly proclaim

You are amazing God, You are amazing God

Bump in the road!

2008-05-03T21:35:00.002-04:00

After eight days of steady progress we hit a bump in the road. Last night and today Luke's co2 level has been up. It is down a little tonight but still not as low as I would like to see. You can pray with me that it will come down and level out at a lower level. He is eating about half what he was when he came to Scottish Rite. I think this is the highest he has gotten since then on his feedings. He still looks so good. Our weekend nurse could really tell a difference today in his swelling. I think at the peak of his swelling he was about 6.5 kilos and he is down to 4.6 as of last night. I tell him he is my incredible shrinking little man!

Laminin

2008-05-01T23:06:00.002-04:00

Here is a link mentioned in our comments from yesterday. It is a real blessing.

http://www.youtube.com/watch?v=_e4zgJXPpI4

Slow and Steady

2008-05-01T22:05:00.002-04:00

Those were the words used by the nurse tonight. That is the kind of progress we have been making for a week now. I think this is the most days in a row Luke has had where he is progressively getting better. We rejoice in each setting that changes and over every part of him that looks less swollen. God is so powerful and good and he is showing us he can do mighty things with Luke. It is so fun for nurses who haven't seen him in a week or so to come by. They are shocked to see the change in him. We are so thankful for your prayers.

I find it hard to write tonight as some friends of ours got some not so good news today. As I cried with my eyes and cried out to God some verses in Joshua came to my mind.

Joshua 1:5 "...I will never leave you nor forsake you."

Joshua 1:9 "Be strong and courageous. Do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go."

How comforting to know God is with us no matter what we are going through. All we have to do is believe in him and ask him to forgive us. He will come into our hearts and he will never leave us. I know he has been right with us and also with Luke. We have felt the Holy Spirit comfort us in all our ups and downs. I know he rejoices with us in Luke's progress and he has carried us through our tears.

In His Hands

2008-04-30T22:50:00.002-04:00

I love to hold Luke's little hand. It feels so good to feel him squeeze my finger, probably just a reaction in his sleep, but it still feels good to connect with him. His little hands have been so swollen and still have a ways to go, but even swollen I would hold his hand and hope he felt the connection and it made him feel good. Often I feel I walk through the day holding God's hand just so I can be close and feel connected to him. My prayers are usually a running conversation off and on all day as I hold on to God. Meanwhile he is holding the whole world in his hands. I am reminded of this as I pray for others who also hold onto God's hand, a little friend who will face heart surgery tomorrow, her parents as they wait during her surgery, a friend who tries to recover from a really bad car accident...how overwhelming to us to think God cares and is involved in so many lives. Lives he created and people he calls his children, his very own. Oh how he loves you and me.

1 John 4:9-10 "This is how God showed his love among us; He sent his one and only Son into the world that we might live through him. This is love; not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins."

Luke continues to do well. They weaned him quite a bit today and have had to go back a bit on it tonight, but hopefully by morning they can get him back to some of his settings from today. His labs continue to be good and he was resting really well today. Thank you for continuing to pray for Luke.

Looking Good!

2008-04-29T21:50:00.004-04:00

Luke just looks better every day. We just sit there and study him to see what might be different. Today he was really moving his mouth, sucking on his tube and opening his mouth really big. He can shut his mouth all the way now too. Today he was moving his head just a little too. His hands are still swollen, but you can squish the fluid in them where before they were tight and looked ready to pop. Today the doctor raised his feeds and lowered his vent settings a little. So far he has done well with both. One thing I really want to pray against is more infection. That could really set him back again. Today the doctor used the words that he is improving! How wonderful and how far we are from last week.

Today in My Utmost for His Highest the title is "Gracious Uncertainty". Oswald Chambers goes on to explain, "Certainty is the mark of the commonsense life - gracious uncertainty is the mark of the spiritual life. To be certain of God means that we are uncertain in all our ways, not knowing what tomorrow may bring. This is generally expressed with a sigh of sadness, but it should be an expression of breathless expectation" I think that is how I have been feeling lately - still uncertain of exactly where we are headed with Luke, but certain of my belief in God and that he is in control and answering our prayers each day. I am filled with expectation of what the future will bring and excited to see what God will do next. He is so good and brings new strength and blessings every morning. We face each day with gracious uncertainty - abandoned to God and expectant in what he will bring each day on Luke's journey.

Psalm 71:14 "But as for me, I will always have hope, I will praise you more and more. My mouth will tell of your righteousness, of your salvation all day long, though I know not its measure. I will come and proclaim your mighty acts, O Sovereign Lord; I will proclaim your righteousness, yours alone."

Kendall, we will get a better hand picture tomorrow!

Slowly but...Slowly

2008-04-28T23:51:00.004-04:00

Luke continues to amaze the hospital staff & his parents :) Susan & I can't believe how far he has come with his swelling, he still has a long way to go but we are so encouraged. His condition improves with the reduction in swelling, it caused so many complications. We are watching his eyes like a couple of seeds that were planted in the ground, just waiting for them to emerge. His swelling will need to go down a good bit more to see them, but we can see them moving around under his eyelids now.

Matthew 5:14-16

You are the light of the world. A city on a hill cannot be hidden. Neither do people light a lamp & put it under a bowl. Instead they put it on a stand, and it gives light to everyone in the house. In the same way let your light shine before men, that they may see your good deeds & praise your father in heaven.

I believe that for this short moment in eternity Luke is shining God's light on many people. Maybe he is just a little like the moon, in how it reflects the light of the sun & lights up the dark of the earth at night for a short time, allowing those who could not see a chance to see. Because of this we praise our father in heaven. We are so very thankful that he has used Luke in the way he has & continue to pray that God works miracles not only in Luke's life but in the lives of all of you who have showered us with your affection & prayers.

He will be weaned off his sedation for more than a month & his steroids will take a long time to be weaned as well. I had a tough time hearing the nurse mention that he will be off of the medications by June. That seems so far away, April 29th seemed so far away a coule of months ago however & the Lord's grace has carried us this far, I trust it is sufficient to carry us as far as we need to go.

I am going to try to find a picture from the 1st day in this hospital, the peak of his swelling & today so that you can compare them & see more clearly the progress he has made. God Bless all of you, I don't even know some of you but you have touched my family deeply with your concern. Only through God is it possible to be blessed by a stranger in this way. Take care!!

More Progress!!!!

2008-04-27T21:39:00.004-04:00

Luke is just doing so well. Eric and I could see so much progress with his swelling. His little ears are taking shape again. His chest and stomach are much smaller. We can see the holes in his nose now! We love to sit there and check out every inch of him to see how he changes. He continues to do well breathing on the new vent. Today I took him some music and a little player with a pillow speaker. Now he can listen to the same music Hogan and Sydney listened to as they went to sleep as babies. I just talked to the nurse and she thought it seemed soothing to him. We just praise God for how far he has brought Luke this week.

This morning at church the speaker talked about the relationship this certain kind of sheep have with their shepherd and how they learn his voice from the moment they are born and follow his voice when he calls to them. God wants this kind of relationship with us from the moment we come to know him. He wants us to learn his voice, love him and build our relationship with him so that we know and depend on him as our heavenly father. In trials like we have been going through, we hear God's voice calling us closer to him. We follow his word and trust in his will for our lives. I have spent the last nine weeks building my relationship with Luke as he hears my voice and I learn his ways, all the while leaning on my heavenly father. I pray Luke finds comfort from me and my voice as I find comfort in God.

Isaiah 40:11 "He tends his flock like a shepherd. He gathers the lambs in his arms and carries them close to his heart, he gently leads those that have young."

2008-04-26T22:24:00.005-04:00

Luke is just doing so great! He continues to do well on the new vent. He didn't even de-sat when I picked him up to change his bed today and even calmed himself down (quit breathing over the vent and brought his co2 down) without extra sedation. They are beginning to wean his sedation but that will take a while since he has been on it so long. Our weekend nurse was just knocked out at the progress he had made. Today you could definitely tell the swelling is going down. He has little wrinkles on his hand where it was tight and ready to pop! We are so thrilled he is doing so well. The next hurdle will be can he do okay as they wean the steroid that has helped his progress. We praise God for all he is doing for Luke. He is mighty! He created a strong little boy to go through all Luke has and we know God is carrying him through all these struggles.

Psalm 106:1-2

2008-04-25T23:04:00.003-04:00

"Praise the Lord. Give thanks to the Lord, for he is good. his love endures forever. Who can proclaim the mighty acts of the Lord or fully declare his praise?"

I am filled with such a feeling of excitement. Luke is still doing well. We know God has answered so many prayers. Even if Luke is not completely healed here on earth, God will have done great things. As I think back over all he has brought Luke through already, he has performed miracles. Our miracle for today is that Luke is still doing well on the new vent, having good blood gases and co2 levels that are within his limits. The fact that the nurse and I could move Luke (I finally got to pick him up in my own hands!) to change his bed and massage him, and he didn't de-sat. A couple weeks ago he could not have handled us handling him. All the infection God has brought him through is a miracle. The fact that he is still here after his kidneys weren't functioning is amazing. The confirmation he has given us when Eric and I are immediately in agreement is a blessing. The peace he has given is indescribable. I thank God for all the mighty acts he has already performed in Luke's life and continue to ask for healing from Jehovah Rophe, God our healer.

For most of this last year I have prayed that God would use us. I know he led Eric to go to Nigeria a year ago and gave him the desire to help provide water for the people there. I know he continually calls me to work with children at church, but I felt led to pray for direction for us as to where he wanted us to work next. He has definitely answered that with Luke. Whether it is for a short time or a lifetime, we will proclaim his power, his love and his miracles we have experienced and hope to experience to everyone. We pray people will come to know Jesus through our faith in God we feel led to share.

1 Peter 1:6-7 " In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. "

Doin' OK !

2008-04-24T22:09:00.006-04:00

Luke is doing fine this evening on his new ventilator. The transition from one to the other went VERY smooth. His labs all seem to be good since he started on this new vent, so it seems to agree with him. We were thankful that all his nurses & his doctor worked so hard (the respiratory techs actually did the tough stuff today) in making the changeover. His swelling is not dramatically different, but both Susan & I think his face looks less swollen. From the neck down there is not much change that is visually perceptable. We had some tough decisions to make today that required prayer, Susan & I felt that the prayers were answered in a clear fashion just as we had prayed. Not all prayers are answered in the way that we want them, some appear never to be answered...at least in our human eyes, but if we look closely enough many are answered. God does not answer all of our prayers for good reason, sometimes we may ask for something that may not be good for us or may not be part of God's plan for us, I believe that in those cases prayers are not answered. God knows best...ALWAYS. We still trust him completely in Luke's life, as I have said to many folks, God created him perfectly. He may not seem perfect by many measures, but the only measure that counts is God's. We judge our lives through human eyes & see many flaws in them, what we need to see is God at work, no matter what the circumstance.

We were actually amazed to see his little chest "breathing" today. It is probably as exciting as watching grass grow for many of you, but in this case, for us it was a joy to see. There is a video below.

A friend forwarded us an amazing inspirational video today, we were moved by it & amazed at how small all of the "big" things in our lives seemed after viewing it. It is about a man with no arms or legs & how he praises God for making him the way he is. The link is www.wretch.cc/video/ritahsia&func=single&vid=2282608&o=time_&p=0

We will continue to face more challenges & trials with Luke as long as he is alive. We do look at them differently each time I think, we are more thankful after each roadblock that God is with us & see the miracle that he has blessed us with in Luke. We wouldn't change him a bit! We love you all for supporting us, each of you supports us in a unique & different way. God Bless You !!

THE PICTURE BELOW IS ACTUALLY A VIDEO, just click on it.

new vent...

2008-04-24T13:24:00.002-04:00

Susan just called me and asked that I post a quick update. The doctors have successfully moved Luke to the other ventilator. Susan and Eric are up there watching Luke as he adapts to the new machine. I know they said they are blessed with a wonderful nurse and doctor to walk them through this transition.

Prayer Request

2008-04-23T15:38:00.003-04:00

So far it seems the steroid is helping Luke. They were able to go down on the pressure on his ventilator lower than he has been in weeks and hope to get all the settings lower overnight. If that all goes the way the doctor wants it to he is going to try Luke on a conventional ventilator tomorrow. This will allow him to do some of the breathing and hopefully allow them to bring him off some of the sedation. This way he can move around more and maybe more of the swelling will come off. This all may or may not work and if it doesn't he said we could try again after a few more days of steroid treatment. His labs looked good again today and he is resting very well. He doesn't de-sat as much as he has been when he is messed with, even picked up. This is progress since a week or so ago they had to cancel his twice a day x-rays and go to once a day because he couldn't handle being picked up for the x-ray. We do see a little less swelling today so that was good. We are praying that the ventilator switch will work tomorrow. Please join us in praying for this as well as Luke's blood gases tonight, rest so his body is ready to breathe and make the switch and wisdom for the doctors. We ask God to bring healing to Luke's body.

I go back to one of my favorite verses as we make our requests known to God.

Philippians 4:6-7 "Do not be anxious about anything, but in everything by prayer and petition make your requests known to God. And the peace which transcends all understanding will guard your hearts and your minds in Christ Jesus."

For your info. only !!

2008-04-23T01:58:00.003-04:00

Just a quick note for everyone. You can zoom in on the pictures if you click on them (many people were not aware). There are videos from time to time as well, including one about 4-5 days ago that look like pictures as well, they have a little "play" button on them & must be clicked 2x.

New idea

2008-04-22T21:23:00.002-04:00

Luke has remained about the same for a few days. Up a little then down a little. No huge changes. As I was driving to the hospital today I was just wondering how long this would go on. When I got there I was praying over Luke and just telling God I was in need of some change or an answer - just something. About twenty minutes later the doctor walked over and said he had been talking with a colleague about Luke. This was the same man he talked with a few weeks ago about Luke's kidneys. The man couldn't believe Luke was still here! After their discussion our doctor decided it would be good to try a steroid that had shown some improvements in premie lungs if we would agree to it. We decided it was definitely worth trying so Luke got his first dose today. He will get it for five days and if it is going to help him we should see some results quickly. I think it just helps to at least be trying something after so many days of up and down. They also think nutrition is very important and are upping Luke's feeds and adding calories. Luke's labs are getting better every day. His albumin is actually going up each day. We continue to rest in God's will for Luke's life. We just love him more every day we have with him and are thankful for each day. His little life continues to reach people - more every day. We are thankful God has allowed us to take this journey with Him as we know He is leading us, carrying us sometimes, giving us strength and teaching us patience.

Psalm 105:1-4 "Give thanks to the Lord, call on his name, make known among the nations what he has done. Sing to him, sing praise to him, tell of all his wonderful acts. Glory in his holy name; let the hearts of those who seek the Lord rejoice. Look to the Lord and his strength; seek his face always."

Outstanding

2008-04-20T22:12:00.004-04:00

Luke is very stable and has made little steps. He is down a few parts on his nitric oxide (they are trying to wean him off it 1 part every 8 hours). His labs were very good today. His ventilator settings are heading down with each blood gas (he was very high again Saturday). His swelling remains the same. At this point the doctors don't seem to give us much hope that it will come down after so much time. It seems we just come back to the fact that God is the only one who knows Luke and can heal him. We keep our eyes on God and know He holds each day.

We find so many blessings in the midst of our storm. It just seemed like every word at church today was a word we needed to hear. We are always so filled in worship and in the relationships we have at church. As always we are brought to tears many times. Today through a song sung by John Waller and dedicated to Luke today and always as we cry out to God on the altar and so many of you gather to pray with us. Our pastor spoke about outstanding prayers - prayers that haven't been answered yet. We are right there with Luke. God has answered many prayers daily and nightly as we pray over settings and blood gases and labs. We wait with our outstanding prayer for healing. He also talked about outstanding requests and being bold in what we ask for. We are boldly requesting healing for Luke. We trust God that however he chooses to answer that prayer it will be the best for all of us. We can't know the response yet, but know in God's time he will give us an outstanding response and we will praise him with outstanding follow-through. I love the words John sang today. This is where we are...

We need you
Yes we need you now
We're desperate for
Your presence, Lord
you are able and willing
and we know

You are the God
Who saves us
You are the God
Who heals us
You are the One
Who restores and delivers
God, you are able and more than willing
God, you are able and more... than willing

This song is new, but you can learn more about John and listen to his music on his site.

http://www.johnwallermusic.com/

One step forward two steps back

2008-04-18T22:40:00.002-04:00

Eric and I decided a few days ago just not to watch Luke's ventilator settings because they change so often. You get a little excited about a decrease only to have an increase with the next blood gas. Luke has been trending down with his amp settings on his ventilator for the last couple days and this afternoon and tonight has gone back up. Not as high as a few days ago, but higher than yesterday! Otherwise he is pretty stable. His kidneys are still functioning well and his labs look good. We don't see much visual improvement on the swelling, but keep watching. He has been very comfortable today and not needed much extra sedation (he is on a lot already, they just use some extra drugs when he needs them!) We continue to pray for healing and whatever is God's will.

Today I was able to talk to a few nurses about all the people who were praying for Luke and how I believed God had brought him through so many of the days when the doctors thought he might not make it. A lot of them seem so open to talking about God and how he works in these babies lives in the NICU. One respiratory therapist, who I like to talk to, was telling me today about her 18 month-old niece who was diagnosed with a cancerous brain tumor a couple weeks ago and is not doing too well after surgery. Then I met a mom who was bringing her 5 month old to visit his twin brother who was still in the NICU. It made me realize how many other stories there are out there that are just as hard to handle as what we are going through. We all face trials in our lives. Some are big ones and some are small. As Christians we are not promised an easy life and one free of struggles. Isn't it wonderful that God gave us his word in the Bible to turn to in these trials and know that he himself is with us each step of the way and will make us stronger followers of him and closer in relationship with him through these trials. It makes them so much easier to face even when we don't know the outcome - we know who will bring us through trial and be with us still after it's over.

James 1:2-4 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything."

2008-04-17T21:45:00.002-04:00

I think Luke is making progress. He definitely was not more swollen today and certain parts of him looked less swollen. The doctor said he didn't want to get my hopes up too soon, but he thought it looked like this swelling might be turning around. They are going to be able to give Luke lasix once a day as long as his labs stay good. Tonight he had the biggest response in a long time with a huge diaper. We are just praying for the fluid to keep coming off. He is still eating jsut a little, but still doing well with that. Overall he had a good day today and a good night last night. God is so good to answer our prayers for each day. We come to him with so many little requests that seem so big to us and he hears each one and cares about every little happening in our lives. Thank you for praying for Luke and for us. We are truly blessed by so all of you and strengthened by your prayers.

Children

2008-04-16T21:47:00.003-04:00

Luke had a down up day. He started off on very high ventilator settings and is ending them at much lower settings. He seems to have bad nights so I just told the nurse who is on tonight that the kids and I prayed for Luke, the nurse and his night tonight. She laughed and said so far it was good! It was a rough day emotionally with our doctor getting some news from another doctor that we were ready to stop treatment on Luke. I thought he was coming to tell me he was dying so it was a roller coaster morning. I just told him I pray we never have to make that decision - that God will make it for us. That is a prayer concern that God will just reveal his will and direction very clearly to us. Luke remains stable in his very sick condition. His labs were okay today and he is oxygenating well, he just remains on a lot of ventilator support. I didn't see much change today in the swelling. We'll just keep praying.

I love children of any age. I teach a 3 year-old choir at church on Wednesday nights and tonight as I sat singing with them I just smiled at their sweet little voices singing praise to God. They just sing (shout) with all their might about "all things, everything, absolutely anything, God can do anything." I think how God must smile to hear them sing. I pray that each on of them will grow up learning and experiencing the absolute power of God. It seems like I hear so many stories about how children are following the blog and praying for Luke. We are so touched to hear the stories. God cares so much for children and I know loves their prayers.

Psalm 8:2 "From the lips of children and infants you have ordained praise."

Matthew 19:14 "Let the little children come to me and do not hinder them, for the kingdom of heaven belongs to such as these."

Mountain Mover

2008-04-15T22:56:00.002-04:00

Luke is still doing okay. His labs are still good. His CRP has dropped again so the antibiotics are working. We think the swelling is continuing to go down very slowly but we see it. He is doing well with his little bit of feeding. He is still having good diapers. His vent settings continue to be up and down so we don't really watch them very closely at this time.

I was filled today with the overwhelming power of God. He created this whole world, each and every one of us down to each little detail. He made the human body so intricate that science can't explain the way it works sometimes. God has the power to heal anything, whether here on earth or in heaven. God can lift us out of the deepest, darkest valley if we only trust in him. He just asks us to place our faith in him. I like the words to this song on a CD a friend shared with me.

"My God is a mountain mover, my Gods gonna make a way. Can't count all the times he's proven, we can trust him just have faith. Take a hopeless situation, watch him turn it all around. Nothing is impossible. Can't hold back I've got to shout - my God is a mountain mover."

Psalm 28:7 "The Lord is my strength and my shield, my heart trusts in him and I am helped. My heart leaps for joy, and I will give thanks to him in song."

Wine not Whine

2008-04-14T22:21:00.003-04:00

I admit I did a little whining today. I just wish God could give us a glimpse into the near future so we could see God's plan for Luke. I am thrilled with the progress he is making, it just seems slow sometimes and we wish we could just make things go quicker. It seems God just gives me answers and assurance. Today it was in a devotional book. "... to those who have no might He increases strength. Isaiah 40:29 God comes and takes us out of our emotionalism, and then our complaining turns into a hymn of praise. The only way to know the strength of God is to take the yoke of Jesus upon us and to learn from Him...The burden that God places on us squeezes the grapes in our lives and produces the wine. If your life is producing only a whine, instead of the wine, then ruthlessly kick it out." I will concentrate on the wine God is producing in my life in this burden of the unknown. God continually gives all of us the strength to face every day no matter what the burden because He will lighten our load when we "cast our burdens on the Lord..." Psalm 55:22 I am so thankful we have a God who cares about each little thing we are going through on this earth and walks with us through each one.

Luke had a very stable day today with not many changes other than the doctor began feeding him again. They start out slowly but usually Luke does well with that - he must have that eating gene from me! He is still having good diapers and the swelling is still just a tiny bit better. I know it will be a slow process for it to come off.

Progress!!!

2008-04-13T21:21:00.003-04:00

Today at the hospital with Luke we could finally see progress with the swelling going down! It is slight progress but we are on the right track. His head is now cushy instead of tight with fluid and you can now move the skin on his hand instead of it looking like it will explode. The doctor is very happy with his direction and said he may begin to feed him again if everything looks as good tomorrow. Today the nephrologist told our nurse he didn't think Luke would still be here today. It really hits home how sick he is and has been. We are so thankful God has brought him this far. The only culture that has grown is in the ET tube which is showing staph. He is being covered by antibiotics and his CRP is heading down. It was such an exhilarating feeling to have good news today, especially after we started the day in the ER with Hogan getting a stitch over his eye where he hit his head when he fell out of bed in the night! We are really just trying to hit every hospital in town. He is fine but gave Eric a scare when he passed out during the stitch.

We felt so good to be in church today with so many of you who are praying with us. We will never be able to express our thanks enough or to all of you who are standing with us, but know we are being blessed by God's love shown through you. As we prayed at the altar today the congregation was singing one of my favorite Brooklyn Tabernacle songs.

"For you, Oh Lord, are my strength, my shield, my glory and the lifter of my head. "

God is our strength and our shield and our glory. He lifts us up from the things of this world to keep our focus on Him and the work he is doing.

Let Go and Let God

2008-04-13T07:57:00.002-04:00

I saw this on a bumper sticker as I was leaving the parking lot yesterday. I like that saying and it stuck with me while we watched Finding Nemo. All through the movie the dad is having to "let go" of Nemo and let him learn on his own. Then I was reading My Utmost For His Highest and there it was again. " Even the weakest saint can experience the power of the deity of the Son of God, when he is willing to let go. But any effort to hang on to the least bit of our own power will only diminish the life of Jesus in us." Letting go is not always easy, but I have found God's way is so much better than our way. I love holding on to my children, physically and in my heart. With Luke I can only hold a small hand but hold him very close to my heart. Over and over I tell God I am turning him over to you (God) because he is yours and I know your power is the only power that can help him. Saying good-bye to him each day is very hard, but putting him in God's hands is easy because I know HE is the only way. I have found this so true in every situation in my life. If I let go and let God it will always be best for me.

We are seeing answered prayers. In spite of the fact that his CRP (which is a marker for infection) had jumped up, his other lab numbers are getting better or staying good. Today the CRP is down some. His albumin is finally up so maybe we will see some progress with the swelling. He really had a good day even though he seems to have an infection somewhere. So far the blood cultures haven't grown anything. They take 5 days to be final so we will watch that for a few more days. I called this morning and he is battling his co2 but we have a good respiratory therapist today who knows Luke and will work to get that down. I didn't take a picture yesterday. I forgot - could be I was a little busy keeping Sydney quiet and still for 3-4 hours! She really did well and was so sweet singing to Luke and telling him stories. She came home and played NICU with Hogan. He was the RT and she was the nurse. They were busy taking blood gases! A whole new world of knowledge for them.

In God's Hands

2008-04-11T23:39:00.002-04:00

Luke is very serious once again. Last night in the night his blood pressure dropped and they had trouble getting it back up. They finally did and it has been good today. Then his morning labs showed evidence of an infection. That is what the doctor thinks caused his blood pressure to drop. Anyway they have sent his blood off to culture and started him on 3 antibiotics. In the midst of being so sick his co2 and blood gases have been good. We need to pray that the infection is not in his central line which is where he is receiving all his meds and fluids. The doctor is very worried about this and how his little body can battle another infection.

We were so thankful to be together today - all 5 of us. Hogan and Sydney feel so much better that they have been with Luke again. We spent some time with him this morning and went back tonight too. We all continue to have a peace that God is holding Luke in His hands and he's going to be okay. We continue to draw strength from God and turn to him in this storm. We do not dispair, we trust in God's perfect plan for Luke's life.

Psalm 59:16 "But I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble."

The Battle Belongs to The Lord

2008-04-10T22:12:00.003-04:00

I think of this song when I see Luke and all the battles his little body is facing every day. I was asked the question today, "What is the long-term objective?" I answered to get through each day - even each hour at this point. Things just change so quickly. This morning the doctor called to say they couldn't keep Luke's co2 down and there just wasn't anything else to try. We would just have to wait and see if it would go down. The good news was he was oxygenating okay. By the time Eric and I got up there he was doing okay. They were able to try some new ventilator settings and keep his level down all day. It seems like his swelling is down a little in his head, but has moved down into his chest and abdomen which is causing the increased breathing problems. This is mainly because his bed has been tipped a little to try and decrease the swelling in his head. Anything to get this fluid moving out of him! They were able to draw blood from his central line today which gave them some more accurate lab results. These all look good but the albumin still hasn't gone up. The best news is that the RSV season is over and the kids can now go in the NICU to see Luke. They haven't seen their brother in 5 weeks so they are thrilled. As Luke faces each new battle we are reminded that God is in control and we are all covered with His armor. We have the belt of truth, the breastplate of righteousness, the gospel of peace, the shield of faith, the helmet of salvation and the sword of the Spirit. We thank God for continuing to protect Luke and bring him through the daily sometimes hourly battles.

Epesians 6:10-17 " Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's schemes..."

Prayers

2008-04-09T22:36:00.002-04:00

There is such beauty in children praying. I know we have heard from so many of you about your children praying for Luke. Tonight I was praying with our kids before bed and it just made me smile to hear them pray so fervently for their brother - whom they haven't seen for 5 weeks, but can finally go in and see as of today! They prayed for God to have his hand upon Luke and heal him, to make him just "pop up off the ventilator and be healed". They prayed that it would be okay if God wanted to heal him in heaven because they would still have a brother there. They also prayed for each of you who are reading our blog and have helped us. They prayed that God would bless you as you have blessed us. I can't help but think how God must be smiling at the way these kids are growing in their faith, their prayer time and the way they are seeing love in Christ portrayed. Even though it is difficult some days, I wouldn't trade this experience. That is the way it is when you truly experience God - His love, His strength, His comfort, His peace - you just want more of it.

Psalm 62:1-2 "My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken."

Luke had a good day with not many changes. His labs continue to improve each morning. The albumin is still low, but I know with all of us praying it will be up soon! His kidneys are functioning great. His average output for today was 3.3 cc/kilo/hour. That is the highest yet and his diaper so far tonight was great. I know some of you mentioned less swelling. He could be the tiniest bit less swollen (I studied him quite hard today after you mentioning it) or it could be the camera angle - I try for the best looking shot! We are in such a better place than a week ago. We see your prayers answered every day. Thank you!

Babies everywhere!

2008-04-08T22:47:00.002-04:00

I took the kids to the zoo today so they could do something fun on spring break. It was a zoo of people today as well as animals. It seemed everyone had the same idea for spring break and it seemed everywhere I looked there were people with infants. It left me realizing I have such an empty place in my heart with Luke in the hospital. It is fun to see babies, just makes me miss mine more. Even the gorillas had babies - they sure were cute! I felt better leaving there and getting to go hold Luke's hand. He was "awake" meaning he was moving his mouth, moving his eyes under the swelling and moving his hands and feet. That is how I know he is awake. It always makes me glad to see that - it's just a glimpse of the darling little boy that is still there inside all that swelling and sedation.

Luke is about the same. Still having good diapers and his lab results look better every day. Last night they really had to work to keep his co2 down, but did and he had a pretty good day. I don't think he is any more swollen than yesterday, although at this point it is hard to tell. We continue to pray for the swelling to go down.

Tonight I asked the kids what a favorite verse was for each of them. Sydney's favorite right now is John 3:16 "all the way through 17" "For God so loved the world that he gave his one and only Son that whoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world, but to save the world through him." Hogan liked Psalm 139:13-15 "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made;your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth." He said that is because we know God made Luke the way he wanted him and he could heal him.

We thank God for giving us all this learning and growing experience. We thank him for his goodness, faithfulness, provision but most of all love that he would give his very own Son for each one of us.

Patience...It's not easy !!

2008-04-07T23:49:00.004-04:00

Everyone says they can tell when Susan blogs & when I do. Most of the wonderful content you have read all comes from my incredible wife. Luke is so blessed to have her for a mother, she is the glue that holds us all together & I don't what I'd do without her.

At times I feel very strong & can deal with all that is being thrown at us. Other times I feel that I may crumble. This week has been particularly hard for me, I don't know why. I feel so incredibly helpless when I am with Luke & can't help him. I am doing my best to stay on top of his treatment, but not to get tangled up in all of the settings of his machines & all of the numbers that we digest each week in relation to his treatments. I must seek God at these times to take this burden from me, I cannot carry it on my small shoulders.

He continues to swell, they don't know why & that part is tough to deal with, we are blessed with some of the best doctors available & I know they & the nurses are doing everything in their power to keep Luke alive, that is unfortunately the main goal right now. I particularly like his doctor (Dr. Kapasi) that is on for the next 7-9 days. He is a wonderful man & a VERY comprehensive doctor. Luke has had a couple of relatively quiet days with the exception of one episode where Dr. Kapasi couldn't get his oxygen levels to recover & had to remove him from the ventilator & "bag" him with a hand ventilator to get him to recover. We are getting better overall output from his kidneys (thanks to all of your prayers) but to help eliminate all the excess fluid we need MASSIVE output. Please pray for that. I continue to thank God for all of the friends past & present (hey Mark) that bless us with their kind words & massive amounts of prayer. We trust God's plan for Luke & he was made perfect in God's eyes to serve his purpose. We don't know Luke's future, but we don't know our's either. Today is a gift from God, enjoy it, embrace it & LIVE IT !! We love you all...stay tuned.

I am putting an older video (you need to click the "play" button 2 times to play it) in with the latest pic from today, so that you can see where he is currently, compared to 5 weeks ago when he 1st arrived at this hospital. He will be 7 weeks old on Wednesday.

Hear my cry, O God; listen to my prayer.
From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I.
For you have been my refuge, a strong tower against the foe. Psalm 61.

Prayer Request

2008-04-07T11:49:00.002-04:00

I like to pray specifically so I am asking for prayer that Luke's albumin level will go up. This is a protein in the blood that acts like a sponge and keeps the fluid in his intravascular system. This is what will pull the fluid back into his system and reduce the swelling. God has really answered the prayers about the kidneys so lets move on to the swelling. Luke is now having an average of 3cc/kilo per hour in his diaper - that is great compared to where we were!

2008-04-06T23:26:00.002-04:00

Luke continues to have wet diapers. The doctor said today he is pleased with his progress there. They had to work with his vent settings and drugs today to keep his oxygen saturation where it needs to be, he just hates to be moved but has to several times a day. This causes his sat to go down and sometimes they have to work to get him where he needs to be. We are thankful to have nurses who are getting to know Luke and work well with him. He is still very swollen and we are sure ready to see that change. I told the doctor today I wish I could just wave a magic wand over him and make it disappear! It all just takes time which is hard to take. Eric and I both wish we had a glimpse into the future to see where we will be in six months. We know we will still be in God's hands as we know He holds the future. We know whatever He has in store will be the best for all of us.

Lamentations 3:22-24 "Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, 'The Lord is my portion; therefore I will wait for him.'"

2008-04-05T22:43:00.003-04:00

The words the doctor used today were that he was happy with Luke's progress. Luke's kidneys continue to be working. He had some great diapers overnight - more than he has had in over a week! His cultures continue to not grow anything so there doesn't seem to be any infection now. I think they will all be final by Monday. Today he seemed very comfortable - unless they move him, then his saturation level goes down and he needs oxygen. I'm sure it wouldn't be too comfortable to be moved in his current situation. His swelling hasn't gone down yet. It will probably take time to move out of his system.

I was reading My Utmost For His Highest by Oswald Chambers where he was talking about faith. It says - Living a life of faith means never knowing where you are being led. But it does mean loving and knowing the One who is leading. It is literally a life of faith, not of understanding and reason - a life of knowing Him who calls us to go.

We don't know where this road we are on leads but we know who we are following. God is carrying us all each step of the way with Luke securely in His arms. We continue to walk in faith.

2008-04-05T09:26:00.002-04:00

My grandmother died this morning. We all called her "Nanny Howard" She was almost 93 years old and so ready to go meet her God. We rejoice in he victory over death and her new life in heaven. I know she is there because she had accepted Jesus as her Lord and Savior and followed him all her life. She was always a good Christian example for her kids and grandkids. We knew what she believed and she was always ready to share her faith with others. She was a fun person, always ready for laughter and usually the instigator of trouble - even water fights! Nanny loved to cook and sew. She made us nightgowns, clothes, quilts, dolls, afghans and taught us to make them too. She loved to tell stories and always new the exact year something had taken place. I am thankful to have had such a loving grandmother for so many years.

Praise God From Whom All Blessings Flow!

2008-04-05T00:10:00.005-04:00

Luke is finally having output! Yesterday he hadn't had anything in his diaper since early Wednesday morning. Thursday the doctor said she was worried about his kidneys since there was no output and his numbers we watch were going up. I went to lunch just turning Luke over to God once more and praying "whatever your will". I came back from lunch and the nurses were so excited to tell me he had 3cc in his diaper. I just looked at him and once again I felt he was going to make it. This continued the rest of the day with the output numbers going up slowly. By this morning he was having 27cc diapers and even a 31cc diaper! The doctor said this in addition to his lab numbers which had gone back down gave her hope for the kidneys. The infectious disease doctor said he is considering Luke infection-free at this point. They have done some cultures this week and so far nothing has grown. He seemed to have really turned a corner today. We just keep praying for healing and feel God has definitely brought Luke through a tough week. God is so good to listen to us and answer our prayers.

1 Thessalonians 5:16-18 "Rejoice always, pray constantly, give thanks in all circmstances; for this is the will of God in Christ Jesus for you."

2008-04-04T09:14:00.002-04:00

We have had some internet trouble right in the middle of trying to post on Wednesday night so here is what I was trying to post. I will update again this afternoon.

Luke made it through another scare today. I came back from lunch to see the doctor by his bedside which meant something was going on. They said his saturation level dropped and wouldn't come up no matter what they did. He thought is was due to his swelling and the blood vessels between his heart and lungs so he was trying some nitric oxide gas. If it was going to work it would work immediately - if it didn't there was nothing else he could do. They hooked the machine up and Luke's level came up immediately. He has remained stable now on the gas in addition to his ventilator. He continues to be so swollen as you can see in the picture. We are so thankful again for doctors with wisdom! I had been sitting there all morning praying for the nurse, the respiratory therapist and the doctor.
It is so good to hear so many stories of how this situation is touching lives. We know God has a purpose in Luke's life and the struggles he is going through. God gives us peace to get through each day, sometimes even each hour.

2 Corinthians 4: 8-9 " We are hard pressed on every side but not crushed; perplexed but not in despair, persecuted but not abandoned; struck down but not destroyed. We alwasy carry around in our body the death of Jesus so that the life of Jesus may also be revealed in our body."

2008-04-01T21:42:00.002-04:00

Sorry I had no picture yesterday. I have misplaced my camera so today I took an old one. Luke is still stable. His output has been more consistent last night and today. Yesterday he hadn't had any output all day then last night he began having some output. It is amazing how excited you can get about a little wet diaper! The doctor explained today that this is capillary leak syndrome where the fluid has leaked out of his capillaries and into the tissue. He said sometimes they will get back to normal and sometimes they don't. He really couldn't give us any time frame - we are still in a wait and see time. He feels this has probably happened due to the infection Luke has been fighting. The doctors continue to keep up Luke's intravascular volume to try to pull some of the fluid back into this system. Luke has been stable these last few days which is good he's not going backwards.

I feel like God is answering our prayers a little each day. We are seeing more wet diapers, we are covered in God's peace, Luke is stable, we got an answer today to what the doctor thinks is going on, we are so taken care of by our family and friends with phone calls, food, cards and prayers. God is so good to us every day.

I found my verse today in a funny way. Our white lab, Sugar, has been a little out of sorts with our crazy schedules. She has been really good for about a week so she was bound to do something soon and today was the day. She chose to eat my little bible which was on the kitchen table. She didn't do much damage just a few bites out of the back cover, Genesis chapter 5 is missing and the last page of Zephaniah. Looking at what was missing in Zephaniah led me to a verse I like.

Zephaniah 3:17 "The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing."

Grace

2008-03-31T22:06:00.002-04:00

grace - an undeserved favor or gift; the undeserved forgiveness, kindness and mercy that God gives us.

That is the definition of grace in my bible. Grace fits our situation in so many ways. Luke is a gift from God. We certainly wanted a third child, but were not planning him. (We had much trouble getting pregnant and staying pregnant) When we found out we were expecting we were thrilled that God had blessed us with his favor. God's grace covers our sins that we as humans continue to commit. I always remember a shirt I had in high school that said "We're not perfect - just forgiven". Though we strive to be perfect we will never be, so we continue to strive to be more Christ-like and ask forgiveness when we are not. God is covering us with his kindness and mercy as we struggle with Luke and all he is going through. As I look back over all the posts we have made it seems like years ago that we started this whole journey. I know it is only by God's grace, power and mercy that we are this far and I know He will see us through to the end in His time.

Luke has not made many changes. He is still very swollen. His head is now leaking the fluid out. We continue to need more output from his kidneys. He is on many sedation drugs so we feel he is comfortable enough. We do pray for his comfort as he looks so uncomfortable. We get a doctor back tomorrow who has seen him through his most difficult days so we look forward to talking with him. We talked today about how after all this swelling is down, the infection under control and his kidneys are working we will still have a little boy who can't breathe on his own, but at this point we would be thrilled to have that little boy back!

As we continue to pray for healing, pray with us for wisdom for the doctors, answers to questions and progress for Luke.

2 Corinthians 12:9 "...My grace is sufficient for you, for my power is made perfect in weakness."

2 Chronicles 20:12 "...We do not know what to do, but our eyes are upon you"

God

2008-03-30T20:39:00.000-04:00

Luke remains stable in his very sick state. He has not had much output in his diaper today so the doctor is working on that. He continues to be extremely swollen as you can see in the picture. We just continue to pray for healing.

Today I keep coming to the verse, "Be still and know that I am God," Psalm 46:10. I think that is what God wants us to do. Just relax and let him - don't keep trying to take all this back and figure it out. We only need to know that he is God. In the first verse of Genesis it says, "In the beginning God created the heavens and the earth." One time in a bible study I was taught that it really could have said, "In the beginning God," and that would have been enough. That says it all. In the beginning God - is all we need. In every situation we face in life God is enough. He is our protector, our comforter, our savior, our friend and our father. We come before him as Abraham did Isaac and lay Luke at his feet. We turn him over as we have to do often because as humans we always want to take it back into our hands. So we will be still and know that God is God.

Luke 1:37 "For nothing is impossible with God."

Patience

2008-03-29T10:34:00.000-04:00

I didn't blog last night because we had a rare night as a family and there just wasn't much new information to share. My thoughts yesterday again turned to patience. When I wrote a couple of weeks ago about the fruits of the Spirit and me needing to work on patience, I had no idea how patient God would really want me to be. As a family we all tend to be spontaneous. We are definitely up for anything at anytime. This is so hard to wait, but we are learning. God gives us just what we need for the moment. I think it is good that we don't know all of what will happen in the future. We certainly couldn't handle knowing it all at once. I am thankful for each day and the blessings we find daily. I am thankful that God continues to keep Luke alive and we see some progress with some part of him daily. Sometimes we take steps backwards but we usually come right back. Yesterday Luke we woke up to find Luke had a very hard night and had some really high vent settings. By this morning they were back down to the settings from the day before. Last night he had a really good diaper (not enough, but better) then by this morning it was down again. We just ride along on the hills and valleys knowing we are in God's hands and in His plan. God continues to fill us with his peace.

2008-03-27T21:31:00.000-04:00

We continue to walk in prayer for Luke. I sat there and prayed most of the day today that God would please take the swelling from him. He is having some output from his kidneys so that is good, it is still not enough, but the doctor is trying some things that he hopes will get them going. The chromosomal testing the genetics doctor had sent off a couple weeks ago came back totally normal. Once again that doesn't help with any diagnosis as to why Luke is having so much trouble, but good to hear his chromosomes are normal!

One of my favorite Max Lucado books is "In the Eye of the Storm". It really ministered to me in one of the storms of my life. Today a friend emailed me these words to a Casting Crown's song.

"I'll praise You in this storm and I will lift my hands Cause You are who You are no matter where I am. And every tear I cry You hold in Your hand You've never left my side and though my heart is torn, I will praise You in this storm."

Once again in my life I am in the midst of a storm, but I know I am not alone. I feel God covering me with His peace, lifting me up with His strength and filling me with His Spirit. God tells us over and over in scripture how he cares for us and will care for us in times of trouble. It is so wonderful to experience God just as He has written. Thank you for continuing to pray for Luke. I know God will see us through this storm.

Chariots of Fire !

2008-03-27T08:56:00.000-04:00

My friend Bill Hubbard sent this to me this morning & I LOVED IT! I think it fits all of you who are praying for Luke & remembering him daily. Your prayers are the shield of protection around him. God is great ! He wrote:

As I’ve prayed for Luke over the past days, the image that keeps coming to mind is that of Elisha the prophet.

The king of Syria was coming to kill Elisha and surrounded the place where he and his servant were staying. The servant was terrified of the unseen dangers around them, but Elisha said to him:"Do not fear, for those who are with us are more than those who are with them." Then Elisha prayed and said, 'O LORD, I pray, open his eyes that he may see.' And the LORD opened the servant's eyes, and he saw; and behold, the mountain was full of horses and chariots of fire all around Elisha (2 King 6:15-17)In the pit of despair, when there seemed to be no one there but Elisha and his servant, God reveals that they are surrounded by angels who are ready to battle against the enemy.

This image comes to my mind so many times when I feel surrounded and alone and feel like God has abandoned me. He is always there in power, even when He is unseen to our eyes which can so easily become shrouded by doubt and fear.

Thanks to you all & may God bless you & your families as well! Eric

We wait upon the Lord.

2008-03-26T21:31:00.000-04:00

Not much has changed today with Luke. We still wait on his kidneys to produce more output. He did better on his oxygen settings today and they were able to wean his vent a little from where they had it this morning. We continue to cry out to God our Father for Luke. We follow Him knowing He holds the future and we can get through each day no matter what we face because of our belief in Jesus and our future in heaven.

2 Corinthians 1:3 " What a wonderful God we have - He is the Father of our Lord Jesus Christ, the source of every mercy, and the one who so wonderfully comforts and strengthens us in our hardships and trials."

Prayers...

2008-03-25T22:07:00.000-04:00

Psalm 5:1-3 " Give ear to my words, O Lord, consider my sighing. Listen to my cry for help, my King and my God, for you I pray. In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation."

We all continue to cry out to God for Luke's kidneys to begin working again. I pray for healing as I cry out with my eyes as well as the words from my mouth! Sydney prays that God will just make Luke pee so much they will have to change his diapers every two hours! Hogan prays that God will just put his healing hand on Luke and make his kidneys work. I know God is hearing so many prayers going up to him for Luke and we thank you for standing with us.

Psalm 121:1-2 " I lift up my eyes to the hills - where does my help come from? My help comes from the Lord, the Maker of heaven and earth."

Luke remains very swollen. His kidneys continue to work just a little. He did make a little progress today with his oxygen settings which is good since at 100% they didn't have any higher to go to help him. We remain in a wait and see mode. We know it is all in God's hands and we walk in His will knowing that He knows what is best for all of us in this situation. We are so blessed to serve such a loving God who cares for us each step of the way. We walk with a peace that God is in control and we need nothing else.

Over another hurdle!

2008-03-24T21:35:00.000-04:00

Well, we have jumped another hurdle. This morning Luke's potassium was at a dangerous level and his kidneys were barely working. The doctor came to us and said we could possibly explore a type of dialysis to see if it could be done on someone his size but he could die in the process or we could sit tight and pray and see if he improved. Eric and I were immediately in agreement that we would sit tight and pray. Within hours his potassium level was down to a manageable level. His kidneys are working just not at a normal level. We met with a kidney specialist who feels they will get back up to speed, but with all the other stuff he has going on they are in a state of reduced flow. He remains very swollen and this is affecting his lungs. He remains on very high oxygen and vent settings. Overall he is very sick and critical but stable for now. We are so thankful for the doctor we have had the last few days. He is ready to try many different strategies to get Luke through these difficult times and seems very open to prayer. This is the second day we have been able to speak with him about prayer. We definitely felt the peace of the Holy Spirit today. As we face of some hard news and hard decisions God blesses us with unity as a couple, clarity, and calm in the midst of the storm. We find strength and refuge in our Lord.

Psalm 91:1-2 "He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, 'He is my refuge and my fortress, my God in whom I trust.'"

Our tough little man !!

2008-03-23T23:04:00.000-04:00

Luke has been doing so well for almost 4 days in a row & for that period of calm we are grateful. The law of averages was catching up with us & we were due for a rough day I guess. The nurse called this morning & his oxygen settings had gone from 21% (normal room oxygen) to 80%. He is currently on the highest possible setting @ 100% concentration. Even at this level his oxygen saturation (I think that means absorption) is still below where it needs to be. He has also continued to swell today, which the doctors tell us is normal. He has gone from around 6lbs. to close to 9lbs. in just a couple of days. That's like me going from 220lbs. to 310lbs. in 3-4 days! He is still getting his course of heavy antibiotics until April 1st but they were concerned about a bacteria culture that they took & are re-checking to see if he is developing a new infection or still fighting the MRSA staph infection. We are now required to wear gloves & gowns when we visit him as are all of the nurses & doctors, this is VERY difficult for Susan to get used to. She was having a tearful day today anyway & since we have never held him, this new level of protection makes us feel more distant from him & is difficult to handle. Please pray for Susan especially in this regard.

Matthew 6:34 says Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own.

Our pastor touched on alot of this today for his Easter sermon & this verse constantly has come to me throughout this entire process.

Matthew 6:27 also says Who of you by worrying can add a single hour to his life. I have to come back to this verse frequently, as I am a "guy" & like to ponder things & try to figure out how to fix them...this one is out of my league, so I trust God & his direction for our earthly doctors that they are doing all they can.

He also received his 2nd blood tranfusion today, as if he didn't have enough to deal with. They needed him to receive his proteins from it as well as several other reasons. Thank God for people who donate blood!

I hope I haven't worried everyone by this post, but we want you to be able to pray specifically for his problems as they arise & today unfortunatley had many. He is not currently urinating & we do not know why, this issue needs specific prayer as his kidney's may be in distress. With all his fluid retention we need him to be able to elminate as much fluid as possible. We had a wonderful day of worship as a family today in church for the 1st time in the nearly 5 weeks since he was born. We wish he could have been there with us, but it was great to see everyone. You all are our shoulders to lean on right now & we thank God for each of you. We believe he has blessed us with each thought & comment you have given us. We are praying for your families as well!!

God Bless You, Eric

Happy Easter!

2008-03-22T23:47:00.000-04:00

"We serve a risen Savior whose in the world today." I can't think of Easter but what that song comes into my head. We do see God in the world in so many ways. How wonderful to know our Lord didn't stay dead on the cross on Friday, but rose from the grave on Sunday. I always remember a sermon by Anthony Compolo (I think) entitled "It may be Friday... but Sunday's coming." I think through Luke's month here on earth we have faced a lot of Fridays that were very dark but we definitely feel God has a Sunday full of healing and light in store for Luke.

Luke continues to be stable. Because of the staph diagnosis last week (which still seems to be in control) the nurses all have to wear gowns and gloves to be in his area. It seems just when they take it all off to go to another child some alarm goes off and they have to put it all on again to help Luke. Our nurse Jennifer today said he had kept her hopping! He was needing a lot of suctioning as the vent he is on seems to cause him to have more secretions in his lungs. We are thankful for such caring and friendly nurses! We are glad to have another day with not many changes and certainly no backward movement.

Luke 18:27 " The things which are impossible with man are possible with God."

2008-03-21T22:48:00.000-04:00

We continue to be blessed by God in Luke's progress.He has had another day of small progress. He is back to eating about half of what he was getting before they stopped his feeds last week and tolerating it well. His chest x-rays continue to look better and his blood gases were good today. They were able to lower some settings on his vent this afternoon. It is so good to have a couple days of stability.

I know God has placed people in our lives for different reasons and there are so many friends that are helping us so much. From the wonderful comments on the blog, emails, cards, food,to phone calls and visits. You are all just the earthly arms of God surrounding us with support. Thank you for reaching out in such a difficult time. We pray God will bless all of you in a special way this Easter as we celebrate our Living Lord!

Ephesians 3:14-19 " For this reason I kneel before the Father, from whom his whole family in heaven and on earth derives its name. I pray out of his glorious riches he may strengthen you with power through his Spirit in your inner being so that Christ may dwell in your hearts through faith. And I pray that you being rooted and established in love, may have power together with all the saints to grasp how wide and long and high and deep is the love of Christ and to know that this love surpasses knowledge - that you may be fulfilled to the measure of all the fullness of God."

2008-03-21T22:34:00.001-04:00

God Bless

Oops! Here is the new picture.

2008-03-20T23:27:00.001-04:00

2008-03-20T22:47:00.000-04:00

Luke has had a whole day of good blood gases and ventilator settings going slowly down! The doctor took him off the paralytic drugs today. He is still really sedated and doing okay. It is so nice to have a couple good days in a row.

We continue to pray for a miracle and believe God has the power to do just that. Psalm 77:14 says, " You are the God who performs miracles; you display your power among the people."

Philippians 2:13 says, “It is God who works in you, both to will and to work for His good pleasure.” He is at work in us and all around us. We may not see everything right now, but one day we’ll know just how good He’s been to us. One day we’ll see the unseen. We know God is at work in our lives right now and he is answering prayers daily. We thank him for the progress and ask for more. We thank him for the peace and the strength that is new each day. We serve a God that cares about even the little things that seem like big things in our lives - like blood gas numbers and vent settings in Luke's life. What an awesome God we serve.

2008-03-19T22:45:00.000-04:00

Psalm 103:1-5 "Praise the Lord, O my soul; all my inmost being praise his holy name. Praise the Lord, O my soul, and forget not all his benefits - who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's."

What more do we need than God? I love this verse when I think about all God does and has done for us. Last night I told Eric I think of God and the pain we feel for Luke having to go through all these trials in life. How much more painful it was for God as he endured his son dying on the cross for all of us. That is love unfathomable, but what joy it brings for all of us who have accepted Jesus as our savior. The knowledge that we will live forever in heaven with him. That knowledge brings us through the darkest days, the unanswered questions and toughest trials.

Luke had a good night last night and a good day today. That means he had good blood gases and they didn't have to go backwards in any of his settings! He remains very swollen but I think we are more used to looking at it and just keep hearing how normal it is.

We continue to be so thankful for all your prayers, your friendships and your comments on the blog. It really helps to know so many people are in one accord praying for healing.

Floating

2008-03-18T22:14:00.000-04:00

As I sat here and thought what to write the word floating came to mind. We are just floating; in God's arms, from one doctor's thoughts and trials to another doctor's thoughts and trials, floating from one emotion to another and for Luke, floating in fluid. That is the main change in Luke. He is VERY swollen which the doctors say is from the paralytic drugs. They are trying to change his vent settings so he can get off the Norcurion but we will have to see if he can take it. He remains on the oscillator vent and in critical condition as the doctors say. He looks pretty pitiful. Even though he looks so bad it still feels good to talk to him and hold his hand.

Matthew 6:33-34 " But seek first his kingdom and his righteousness and all these things will be given to you as well. Therefore do not worry about tomorrow fot tomorrow will worry about itself. Each day has enough trouble of its own."

We continue to seek God first as our Saviour, our friend, our comforter and our answer to each day with Luke. We do not need to worry about tomorrow. God holds it in his hands. He is all we need to carry us through each day. So we float with God as our life preserver.

God Provides

2008-03-16T22:11:00.000-04:00

(This is our family right after Luke was born)

I think it is amazing how God provides for us in the midst of the storm. Last Thursday when the doctor gave Eric such a dim outlook on Luke, Eric immediately called our friend Jamey who works near the hospital. He said he would be right there, and had one of his police officers who was closer come in to the NICU first. Eric went out and met this guy who was really a stranger and told him what he had just been told about Luke. This officer just said "can I pray with you?" and prayed with Eric in a time of much upset. Jamey could have sent anyone, but God made sure it was a Christian brother who would bring comfort. Today I had just been intensly praying over Luke for God's healing. I had been praying, "God, you created him and only you know what he needs and how to fix him." A few hours later the nurse said a pastor was here so I watched for someone from New Hope. In came a total stranger who is a pastor near the hospital and whose daughter is in my in-law's church. She said she felt she needed to come pray for Luke today. She began to pray almost the exact words I had been praying all day. It brought such comfort to be in one accord, praying over Luke.

We had another day of no answers and many trials with settings. Most didn't work. Luke is back on the high frequency ventilator, but doing a little better with his blood gases tonight. He was seen by a pulmonologist today who said he really had no more ideas than the neonatologists had. We just continue to get the word that Luke doesn't fit anything they have really seen before. All this leads us back to - the only physician for Luke is the Great Physician - God who created him.

We ask God for healing and rest in His Word. I chose this verse today because Eric and I end this day a little weary from the ups and downs and the unknowns. We know God will bless us with strength for tomorrow and that is enough.

Isaiah 40:31 "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."

Trust His Heart

2008-03-15T22:09:00.000-04:00

So many times I have thought of the song, "When you can't trace His hand, trust His heart." Some friends of mine wrote that in a card for me so I thought I would share it. We do trust God's heart and know he has the best in store for all of us who believe in Jesus. We find comfort in God's will and wait to see what he will do next!

Luke is about the same, but that is okay. At least we are not going backwards. He was moving a little today, but they are keeping him really sedated so he doesn't try to breathe over the vent. It was just fun to sit and watch him sleep. It just looked better than seeing him paralyzed. The doctors don't seem at all worried about the infection. It is getting much better with the medicine. They are still puzzled with his lungs because he is not really acting like a baby with pulmonary hypoplasia - they tend to need a lot of oxygen and Luke has mostly been on room air settings. They are going to have a pulmonologist look at him next. I just sat there today and prayed, " God, you have taken care of the infection. I know you can heal his lungs so that is what I am asking next. Just please heal his lungs."

Psalm 100:3-5 " Know that the Lord is God. It is he who made us and we are his; we are his people, the sheep of his pasture... For the Lord is good and his love endures forever, his faitfulness continues through all generations."

Praise!

2008-03-14T23:31:00.000-04:00

We praise God for today and that Luke is still here. He has gone from a very, very sick little boy to doing okay. The respiratory therapist was sharing with me today about the miracle his mother is (she was given 6 months to live 15 years ago). I pointed to Luke and said "this is our miracle, you wouldn't believe how many people are praying for him and I know that God is going to bring him through this". He told me he believed it because he had seen his numbers and heard how bad he was a couple nights ago. I am just sharing with anyone how God brought him through the last couple days - even the lady who mops the floor every day!

The doctor didn't round until 2:30 p.m. As he walked up, smiling, he said " You know it's good that you haven't seen me yet today". I knew that meant Luke was much better because they start with the critical patients. He said he couldn't believe the turn around he had made. He continues to do okay on the conventional vent. His blood levels they look at for infection are down (they were up the last two days). The secretions they culture only grew a little staph which means he is responding to the antibiotics. The doctor took him off the paralytic drug, but is keeping him sedated. You can't imagine how wonderful it was to see him move. I was thrilled to see his lip move, his eyes partially open and close on his own and his foot move! He is still really medicated, but he knows when we talk.

Our prayer is that his co2 levels will go down and they can wean his ventilator. Thanks you for continuing to support us and pray for Luke. We appreciate all of you.

Psalm 145 "I will exalt you, my God the King, I will praise your name for ever and ever. Every day I will praise you and extol your name for ever and ever. Great is the Lord and most worthy of praise."

On the roller coaster!

2008-03-13T23:24:00.000-04:00

Luke had a very hard night last night and I think from listening to the nurses and respiratory people who were working with him, he was very close to dying. Then this morning the doctor told Eric that he wasn't going to make it and there was nothing else he could do. Luke has MRSA, a type of staph infection in his lungs. We were ready if this was God's plan. When I got to the hospital they had moved Luke back to a conventional ventilator and he looked okay. I just held his had and thought "he doesn't look like he is dying" and I was just covered in a peace that there was still hope. A few hours later the doctor came back by and said "so far, so good, I just got the best blood gas I have had in days on Luke". He also said the staph wasn't colonizing and was just in his lungs - not in his blood. Luke continued to be stable and have good blood gas tests all day. I was able to share with the respiratory therapist (who told me he didn't think Luke would still be there this morning when he came in) that there were MANY people praying for him and I thought God would be the only way he would get through this. I also shared that with his nurse. My thought all day was that "okay, we are at the worst, but that will only make the miracle bigger!"

We know it is God answering the prayers of all of us who are crying out for healing that got Luke through last night and today. Thank you for standing with us.

"So do not fear, for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you, I will uphold you with my righteous right hand." Isaiah 41:10

No New Pictures

2008-03-13T01:38:00.001-04:00

I know so many of you love his pictures. In his current state we don't have many new shots so I thought I'd post a pic from last week.