Grace

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

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

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.

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 !

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.

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...

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!

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 !!

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!

"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."

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."

God Bless

Oops! Here is the new picture.

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.

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

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

(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

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!

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!

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

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.

Rough couple of days.

Our little guy has had a rough couple of days. He remains in a paralytic state for the 7th day now, initially it was going to be just for 24hrs. but his condition warranted extending it. His oscillating ventilaor has been increased each day over the last 3 days even after his lungs were cleared & his airway tube was incresed from 3.0 to 3.5. That was (we thought) going to get him on the road to recovery, but he has instead faired slightly worse & the doctors are not completely sure as to why. Susan is I am sure tired of me asking them so many questions but I can't stand not knowing what the are doing, I am rapidly becoming a chemistry student. The doctor was not too concerned with our backswords slide yesterday, but with a ventilator setting on the extreme level today he voiced his concern. They are called in another specialist to get some answers for tomorrow the 13th.
Tonight they called in the on call doctor to see him due to his blood gas tests being poor. They measure several things including his Ph level to tell how efficiently his lungs are processing the transfer of oxygen & C02 through his lung sacs called alveoli. They continue to fill up with secretions & they don't know why. She was concerned enought to put him back on the normal ventilator just to see if he did any better (he was taken off of this one since he performed poorly on it). She took him off of the normal one & back on the oscillator within 10mins. They think they have been overinflating his lungs which may not allow the C02 to escape, as his C02 rises the Ph level drops to a more acidic level, 7.35-7.45 is normal, he has varied between 7.18 & 7.4. tonight he a transitory reading of 6.82 which is not sustainable over a long period of time, the doctor said she will only be concerned if it stays there & bythe end of our phone conversation it had risen to 7.1. They are trying some new techniques & settings to see how he responds. I will probably not sleep tonight for the 1st time tonight due to concern over his condition. He is a tough little guy though like his PaPa Ed & we know he will fight for his life with all that his little body can give. He unfortunately had an infection today in his lungs as well, they identified one bacteria & put him on antibiotics but the other type is unknown & they are giving him another type of antibiotic as well.
As you can tell his news has not been good & it has been difficult as of late to keep a stiff upper lip (or a dry eye). If we focus on things of this world we will despair, but if we focus on Christ the thing of this world will grow strangely dim. We can accomplish all things through him who strengthens us. I have had trouble praying lately with the words just not coming to my mind as I would like, THIS IS WHERE WE ARE SO BLESSED TO HAVE ALL OF YOU PRAYING FOR US & HIM! My friend Marty told me today that God knows my heart better than my words & that you all are praying for us so that when we have difficulty, Luke is still being fervently prayed over. Thanks for supporting us in such a caring & prayer filled manor. We love all of you & pray for your families as well. There are many in this world who are suffering more than us. God is good!

We Will Wait Upon The Lord.

We didn't blog yesterday because we were tired and having a down day. We had a new doctor which always brings new opinions and we were just sad. We really miss seeing Luke's eyes and personality.

Luke remains about the same making progress a little at a time and very slowly. We learned that his ventilator settings are very high but at least they are moving down. We continue to get very conflicting reports from many different doctors and are learning at this point we have a lot of opinions but no real diagnosis other than the pulmonary hypoplasia which means his lungs are small.

There is no "fix" for this, therefore we come before the Father who is our creator and cry out for healing.

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

We are weak, but He is strong.

I love to rock my kids and sing to them. I always sing "Jesus Loves Me". I can't rock Luke so I sing to him every day. As I sing the line "they are weak, but He is strong," I always begin to cry because I think of how perfect that is for Luke. Right now he is weak, but he is being cared for by God who is stronger than any need we have. How comforting to know He is our strength.

Luke got a new breathing tube today because they didn't like the way his was positioned and needed it longer. They were able to put in a larger tube than they had in which is a big thing since one of the concerns was that his trachea might be too small. They were able to get in a tube that is a normal size for his size. Otherwise not much changed today.

Here is a video from last weekend for a little humor. I was taking a video and he tried to pull his tube out of his mouth!

My friend, Glorious, from Tanzania came to Atlanta today and prayed for Luke and our family. I thank God for the peace He brought with Glorious's prayer. We believe God is healing Luke. We continue to see progress. Today his lung x-ray looked much better. He is back on the oscillating ventilator, but that just seems to be what he needs right now. The radiologist didn't see anything on the skeletal survey that would indicate any specific type of dwarfism so that was good news. Even though Luke is still out of it, he looks so peaceful and pretty. (I can say that even though he is a boy!) I found comfort in a dream I had last night where Luke talked to me and told me he wanted that tube out of his mouth! (Funny he could talk with the tube in there - but anything goes in dreams) He looked so healthy and strong and I was able to hold him.

We serve a God who still does miracles. Jeremiah 32:27 " I am the Lord, the God of all mankind. Is anything too hard for me?"

"Bring me joy, bring me peace. Bring the chance to be free. Bring me anything that brings You glory, And I know there'll be days when this life brings me pain. But if that's what it takes to praise You Jesus, bring the rain. "

My friend Kelli sent me these beautiful words to a Mercy Me song. We may be in the rain, but we are sheltered by the loving arms of our heavenly father. We know God brings us close and carries us through times like these and we definitely feel him so near.

Luke had another day of resting with the paralytic drugs. The doctor wanted another day of watching his lungs work on the ventilator without him interacting with the vent. Today his right lung was clear but his left was "stuck to itself" and needed to be re-inflated so they worked on that today. He is so sweet looking and I am thankful he is getting rest.

Praise Him

As I sat praying over Luke today, I thought of the movie "Facing the Giants" where the coach and the team would say, "we'll praise him if we win and we'll praise him if we lose". I just felt that today was about praising God - no matter the circumstances.

Luke is back on the conventional ventilator and doing well. The doctor is keeping him out of it to see how his lungs perform. Tomorrow they will wake him up and see how he does. They were able to finish up his x-rays so he made it through all the tests! He looked better today which was comforting for us.

We continue to be amazed at the number of people who are following Luke's life. We are so touched be the many people who care and are praying. Thank you all.

Testing Testing...not today.

Luke was diagnosed today with pulmonary hypoplasia. This means his lungs and chest are small. Whether they are too small for him to breathe - we won't know for a while . We are prepared for whatever is God's plan. We know Luke has a purpose in this world and has already touched many lives.

He was supposed to get 6-8 tests today but early this morning they changed his ventilator to a different type & didn't feel that he was up to removing the tube or continuing all of his tests. He was heavily sedated and for the time being he is intentionally paralyzed, it was difficult to see him like that since he had no expressions & was completely motionless ( he did not look like himself ). They hopefully will be able to complete his testing by tomorrow. We feel that God's hand was in this since it would have been difficult to complete his tests with him awake because it upsets him when they mess with him. They may try removing his tube sometime tomorrow, we will be praying that it goes well.

Psalm 46:1 God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear though the earth give way & the mountains fall into the heart of the sea.

Thanks for keeping up with us today was a day of alot of tears for Susan & I, we continue to be blessed by each of your comments & all of the prayers we are receiving. We have not lost hope in his full recovery & thank the Lord for giving Luke to us as he is.

Tuesday

Luke made his move to Scottish Rite Hospital fine in a POURING rainstorm. At times I couldn't even see the ambulance! The NICU is so big there and very noisy, but Luke has been sleeping well. We know God has been at work in all that happened today and we look forward to some answers with the new doctors. He will be undergoing many tests tomorrow and there will be a couple different doctors looking into his situation. We continue to pray for his lungs specifically.
A few years ago as my Dad was dying my brother wrote a song that went ...maybe not quite what we wanted, maybe not quite what we planned, but walking by faith and not by sight is hard to understand. We do walk by faith, turning all this over to God who will see us through this.
Psalm 55:22 "Cast your cares on the Lord and he will sustain you."

Moving Day

Luke is moving today to Atlanta's Children's Hospital ...

The doctors tried to have him moved earlier but it was just in the last 24 hours (with God's hand and Eric's sister's persistence) that the doors have opened. We're hoping for some clear answers and a more specific diagnosis but we rest knowing God is in control.

It's amazing that within the last 24 hours insurance has been checked and accepted (which we all know is a miracle!) a bed is open for Luke and specialists will be available to consult with us.

More Patience

Galatians 5:22 " But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control."

Well they tried Luke off the ventilator today, but he couldn't make it so he is back on the vent. The doctor said we will just have to get a better looking chest x-ray and better vent settings before we try it again. As much as I want him to be off it was hard to watch him working so hard to breathe. He is so peaceful now and napped most of the afternoon after his difficult morning. He is off everything else now so he is wearing a little shirt and all wrapped up in blankets!

Baby Steps

Luke didn't make much progress with his ventilator during the day today, although they were able to lower his settings a little overnight. He did get his umbillical line out and is doing well with that. He now has two hands free which may prove to be a little trouble! He got a hold of his vent tube tonight so we are having to let him hold something! The pediatric radiologist re-read the bone x-rays and did see some subtle things on his ribs and vertebrae that might indicate a mild type of dwarfism but he is just not fitting in any category perfectly since some of the tests show normal. They will continue to monitor him and probably do some genetic testing. We are ready for whatever God has for us. Still working on the patience. I know I want to see more breathing progress - but it will come. Here is a video from tonight.