Hi all-4/30/09 - 2115 Lil Will is officially 4 months old, my how time flies! He has been doing great! Getting stronger and bigger everyday. Everyday William and I receive an email from Spirit of Prophecy Bulletin. Often times, when we read it and although it is good, it doesn't always speak to what we may be going through that day. On other days, it is the Lord is speaking directly to us. Today was one of those days. Today, William and I had a meeting with Lil Will's physician team to discuss his care and prognosis. We discussed his PAH with the pulmonologist, his opinion is that his PAH will get progressively worse and the meds prescribed for Lil Will may not work or in his words, "are futile." His cardiologist says his heart defect is helping his PAH and he can wait to have his heart surgery but of course, if the PAH worsens, she believes he will die. The kidney doctors say his dialysis is going well and if he weighed 20 lbs and was in good health, he would be a candidate for a kidney transplant. From a kidney perspective, he could come home with us. The palliative care team was also present at this meeting to discuss chronic long term care for Lil Will. The physician from this team appeared to be trying to analyze us, it was quite annoying. Dr. Chadha who is the ICU physician caring for Lil Will the next two weeks was instrumental in organizing this meeting. He has been the most real physician who has cared for Lil Will. He gives us hard facts but is ready to fight with us through aggressive treatments and pushing Lil Will. He always makes sure we are get up to date from his perspective, it is refreshing. Basically, the consensus from the group was that Lil Will's long term prognosis is not good. I don't remember but one of them asked us how we felt about this, my response was I know what reality is based on his health issues, but I believe in God! Dr. Chadha wanted to know from us how we want h im to proceed with Lil Will's care? He says his nature is if Lil Will gets ill once he is extubated, then he will re-intubate him and do whatever is necessary to stabilize him. We decided that is what we want him to do if we are not there when the event occurs, however, if we are there we will make the call in the moment. William told the group that Lil Will will dictate to the doctors what he wants.How do we feel? We do not want to hear that our baby could die according to the textbooks or the little knowledge the pulmonologist has of treating infants with PAH. It is hard to hear but I am reminded of Ecclesiastes 3: 1- To everything there is a season, A time for every purpose under heaven. We see things in earthly time but God sees things from a eternal perspective. We pray, we have all prayed for Lil Will's healing. And will certainly continue to pray and have mustard seed faith. However, all things happen in God's timing and Lil Will is in His hands. In Ecclesiastes 3:3, He says there is a time to heal. He uses people and sometimes physical ailments to reach us, His children. He wants us to fervently pray and seek His face. So, we will keep praying and never give up hope. Some of you may say to yourself right now, how can they still have hope when the physicians have presented them the facts of their son's health and prognosis. I will tell you how, we stand firm in the fact that God is the great physician and although textbooks say one thing about Lil WIll's condition, God has the final say. Ecclesiastes 3:2 says there is a time to die. We do not have the final say on when someone dies, God is in control of the final outcome. We continue to pray, pray without ceasing but know that God's timing is perfect William and I have laid our concerns and desires before God, we trust Him with the final outcome. We may not understand what He is doing, or why He is doing it. We trust that He has our best interests at heart and He is doing something and He will make everything beautiful in our lives in His timing. Below is the Spirit of Prophecy Bulletin that I mentioned.
Spirit of Prophecy Bulletin
SMALL STRAWS IN A SOFT WIND by Marsha Burns -- April 30, 2009:
Be alert and look alive! The enemy's plan is to bombard you with issues that will tend to overwhelm you. Take care not to overlook the important details of the things that demand your attention. Take time to quiet your mind and emotions in the midst of turmoil and demands, and I will give you peace in the midst of your own private storm, says the Lord. Stand strong in the assurance of My strength and presence.
Romans 15:13 Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit. ***********************************************************************************************************************************************************************5/1/09 0545What a word from the Lord? This word helped us yesterday. Today, I awakened feeling hopeful and ready to walk this path God has chosen for us. To fight, to pray, to stand on His promises and work with Dr. Chadha to prepare Lil Will for discharge home. That is our goal and that of Dr.. Chadha. What I know is that God is using our son and our storm to reach His children. He is renewing faith with some of His children, He is strengthening others faith walks, He is showing himself for the first time to some. For me personally, He has renewed friendships that I thought were lost forever due to our own petty ness and un forgiveness. He has brought families closer, He has strengthened marriages all because of this special child He blessed William and I with. No one knows what lies ahead for any of us, but we must not take one single moment for granted. Tomorrow is not promised to anyone. I will end with this with my personal note, although my first months of motherhood have not been what I ever dreamed or imagined, it is MY experience. I EMBRACE it and ask God to continue to show me what He wants me to learn, what He wants me to be able to share with others as I travel this winding road. I thank Him for having enough faith in me that I could handle whatever He placed in my life. I pray everyday that I have not let Him down and that I have used every opportunity, every disappointment, every obstacle, every accomplishment to glorify Him. He is the reason that I can get up every morning because I know He will never ever put more on me than I can bear. So, I speak to the mountains in my life right now and command they be moved. Everyday I prepare my mind and my heart to be a sanctuary for the Lord. I thank Him daily for blessing me with a wonderful husband. Although William and I have only been together for two years, married for one, this storm has only strengthened our relationship. He is my best friend, my confidant and my partner for life. Together along with our Heavenly Father we can make it through.Thank you to each of you for your continued prayers, love and support. God is going to and probably already has worked some miraculous things in your lives. He will do it. Forever lean and depend on Him.Pray focus:1. Cease without praying, don't loose hope, don't loose faith, stand on the promises of God.That is all I requests of you for the prayer focus, if we all stay focused, God is going to show up and show out. I believe it, I receive it, I claim it. it is done!!
Spirit of Prophecy Bulletin
SMALL STRAWS IN A SOFT WIND by Marsha Burns -- April 30, 2009:
Be alert and look alive! The enemy's plan is to bombard you with issues that will tend to overwhelm you. Take care not to overlook the important details of the things that demand your attention. Take time to quiet your mind and emotions in the midst of turmoil and demands, and I will give you peace in the midst of your own private storm, says the Lord. Stand strong in the assurance of My strength and presence.
Romans 15:13 Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit. ***********************************************************************************************************************************************************************5/1/09 0545What a word from the Lord? This word helped us yesterday. Today, I awakened feeling hopeful and ready to walk this path God has chosen for us. To fight, to pray, to stand on His promises and work with Dr. Chadha to prepare Lil Will for discharge home. That is our goal and that of Dr.. Chadha. What I know is that God is using our son and our storm to reach His children. He is renewing faith with some of His children, He is strengthening others faith walks, He is showing himself for the first time to some. For me personally, He has renewed friendships that I thought were lost forever due to our own petty ness and un forgiveness. He has brought families closer, He has strengthened marriages all because of this special child He blessed William and I with. No one knows what lies ahead for any of us, but we must not take one single moment for granted. Tomorrow is not promised to anyone. I will end with this with my personal note, although my first months of motherhood have not been what I ever dreamed or imagined, it is MY experience. I EMBRACE it and ask God to continue to show me what He wants me to learn, what He wants me to be able to share with others as I travel this winding road. I thank Him for having enough faith in me that I could handle whatever He placed in my life. I pray everyday that I have not let Him down and that I have used every opportunity, every disappointment, every obstacle, every accomplishment to glorify Him. He is the reason that I can get up every morning because I know He will never ever put more on me than I can bear. So, I speak to the mountains in my life right now and command they be moved. Everyday I prepare my mind and my heart to be a sanctuary for the Lord. I thank Him daily for blessing me with a wonderful husband. Although William and I have only been together for two years, married for one, this storm has only strengthened our relationship. He is my best friend, my confidant and my partner for life. Together along with our Heavenly Father we can make it through.Thank you to each of you for your continued prayers, love and support. God is going to and probably already has worked some miraculous things in your lives. He will do it. Forever lean and depend on Him.Pray focus:1. Cease without praying, don't loose hope, don't loose faith, stand on the promises of God.That is all I requests of you for the prayer focus, if we all stay focused, God is going to show up and show out. I believe it, I receive it, I claim it. it is done!!
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