Monday, August 31, 2009
In Jesus' Arms
Our sweet baby Samuel went home to be with the Lord this morning at 9:15. He died in our arms after 3 hours of holding him, singing to Jesus with him, praying, and telling him how loved he is. The Lord gave us peace as we laid our son in His arms. We are glad that Samuel's suffering has come to close, but we recognize ours is just beginning. We covet your prayers.
Sunday, August 30, 2009
Comfort from His Presence
Last night Samuel turned 4 weeks old. Tomorrow marks 4 weeks at Egleston.
This morning when we came in after shift change, Samuel's lips were all crusty from dried saliva (he can't swallow on the paralytic), and so Richard and I set about cleaning them up. We were super gentle and just used a wet cloth to wipe them, but Samuel was not happy about it. His stats dropped quickly and significantly. We backed off immediately and gave him space to recover. That was at 10am. It's now almost 6pm, and his stats have leveled out half way between his starting point and the low point when we were cleaning him up. I doubt his stats will ever climb back up to where they were this morning.
We had been toying with the idea of moving to a private room, but several caregivers thought that was really risky. After this morning, Bryan and I decided to hold off for now at least. We told Richard this morning that Bryan and I really want to hold Samuel as he passes away, and so we made a plan for how that will happen if he starts to decline rapidly. We realize we are living in days where we will, in all likelihood, have to hand our son over to the Lord. I spent a good part of this morning feeling all knotted up inside and anxious. But I spent a long time praying out loud with Samuel and talking to God about how I'm feeling and how I don't want to give up my precious boy. There is comfort in having spoken to God about my heart, and by the time I had said what I wanted to, I felt a lot more peaceful. Samuel looks quite bad right now -- everyday he looks worse -- and I do ache for this to be over for him. It's excruciating to watch my baby suffer. I imagine my baby being healthy and whole in the arms of Jesus, and I look forward to that for him (though not for me).
My brother flew in town last night. Bryan, Matthew, and I spent a couple hours at Samuel's side, and then Matthew took the night shift while Bryan and I slept. Matthew was kind to brave an all-nighter when he has a newborn at home. My niece, June, was born 16 hours after Samuel. So Matthew is exhausted already, but he lovingly stayed with our son through the night. Tonight Bryan's brother, sister, and step-mom come in town. We are happy that these precious family members will get to meet Samuel.
I'll be honest -- this experience is dreadful. We are so tired and worn down. And we have hard, hard days ahead of us. I shudder when I think of what is yet to come. But again, there is such comfort in God's presence and in the oneness Bryan and I have as we trudge down this road. Today as I talked to God about my fears and broken heart, I pictured Him standing beside me with His hand on my shoulder, comforting me even as I cried out to Him. It reminded me of a very broken time in my life when a professor of mine stood beside me in the midst of deep pain and gently entered into that pain with me. I found such comfort from his presence and willingness to hurt alongside me, and I know the Lord is with me in my suffering. There is a peace that comes from falling into His love and grace and acceptance of me where I am.
Your prayers continue to uplift us. We need them in abundance. Thank you for joining with us in this journey.
This morning when we came in after shift change, Samuel's lips were all crusty from dried saliva (he can't swallow on the paralytic), and so Richard and I set about cleaning them up. We were super gentle and just used a wet cloth to wipe them, but Samuel was not happy about it. His stats dropped quickly and significantly. We backed off immediately and gave him space to recover. That was at 10am. It's now almost 6pm, and his stats have leveled out half way between his starting point and the low point when we were cleaning him up. I doubt his stats will ever climb back up to where they were this morning.
We had been toying with the idea of moving to a private room, but several caregivers thought that was really risky. After this morning, Bryan and I decided to hold off for now at least. We told Richard this morning that Bryan and I really want to hold Samuel as he passes away, and so we made a plan for how that will happen if he starts to decline rapidly. We realize we are living in days where we will, in all likelihood, have to hand our son over to the Lord. I spent a good part of this morning feeling all knotted up inside and anxious. But I spent a long time praying out loud with Samuel and talking to God about how I'm feeling and how I don't want to give up my precious boy. There is comfort in having spoken to God about my heart, and by the time I had said what I wanted to, I felt a lot more peaceful. Samuel looks quite bad right now -- everyday he looks worse -- and I do ache for this to be over for him. It's excruciating to watch my baby suffer. I imagine my baby being healthy and whole in the arms of Jesus, and I look forward to that for him (though not for me).
My brother flew in town last night. Bryan, Matthew, and I spent a couple hours at Samuel's side, and then Matthew took the night shift while Bryan and I slept. Matthew was kind to brave an all-nighter when he has a newborn at home. My niece, June, was born 16 hours after Samuel. So Matthew is exhausted already, but he lovingly stayed with our son through the night. Tonight Bryan's brother, sister, and step-mom come in town. We are happy that these precious family members will get to meet Samuel.
I'll be honest -- this experience is dreadful. We are so tired and worn down. And we have hard, hard days ahead of us. I shudder when I think of what is yet to come. But again, there is such comfort in God's presence and in the oneness Bryan and I have as we trudge down this road. Today as I talked to God about my fears and broken heart, I pictured Him standing beside me with His hand on my shoulder, comforting me even as I cried out to Him. It reminded me of a very broken time in my life when a professor of mine stood beside me in the midst of deep pain and gently entered into that pain with me. I found such comfort from his presence and willingness to hurt alongside me, and I know the Lord is with me in my suffering. There is a peace that comes from falling into His love and grace and acceptance of me where I am.
Your prayers continue to uplift us. We need them in abundance. Thank you for joining with us in this journey.
Some Things That I Have Been Thinking About
Philippians 3:6-7 – “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
Psalms 34:18a – “The LORD is close to the brokenhearted…”
Matthew 11:28-30 – "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."
Matthew 5:4 – “Blessed are those who mourn, for they will be comforted.”
1 Peter 5:6-7 – “Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.”
Psalm – 121:2 –
“My help comes from the LORD,
the Maker of heaven and earth. “
These are some of the verses that I have been thinking about a lot these days. Many of them are verses that various ones of you have offered through your comments or emails. Thank you. I have been familiar with all of these verses/truths for some time, but I have been seeing and experiencing them in a new light for the last month. I would never wish what Kathryn and I are going through on our worst enemies. Hopefully, in my finest moments, I would not wish trials of any kind on anyone. At the same time, I wish for everyone to experience the peace, nearness, rest, comfort, care, and help of the Lord the way that we have in these days. It is amazing, humbling, ingratiating, and life-changing.
Interestingly, in most of these verses there is a clear step that we need to take to receive what the Lord offers us. He does not force Himself on us. At the same time, all that he asks His grace will provide.
If offered the “peace that passes understanding” (see Philippians 3:6-7 above), we’d all take it in a heartbeat. But what is required of us to receive this peace, demands more than we might initially think. We need to pray to God about the things that make us anxious, AND do it with gratefulness (“thanksgiving”). It’s been that “with thanksgiving” part that has been especially challenging for me recently. Many, many times my heart has been anxious. Many, many, many times we have prayed and petitioned God. But I’ve had to discipline myself to thank Him for His goodness all around me (and once I get started, I realize that this is not a short list). Before long, I find that I feel peaceful; a God who has so richly poured out his blessings on my life is a God who I want to trust. Of course, all of this is not a formula, but a relationship based on grace, and the struggle is constant because God does not promise to answer our prayers and petitions the way we ask Him to. But then, the alternative is to be anxious about things that are outside of our control…which is exhausting and entirely unproductive. So we pray and give thanks. The peace we have felt through much of this season is inexplicable apart from God.
I have similar thoughts about nearly all of the verses above, but I’ll summarize my thoughts by saying that what God offers us through His Son, Jesus, is life and peace and rest and care and help and more. He invites us to come to Him and find these things there. Not on our terms, but on His terms. Not bartering, but humbly asking. Not because He owes it to us, but because He is generous. Not because we deserve it, but because He is merciful and gracious. Not because we know what we need, but because He knows what we need.
In this season of desperation, heartbreak and helplessness for Kathryn and I, this has been easier to do than in “normal” life because we have never had even the illusion of control over our circumstances. But that seems to be what trials do – they strip us of the illusion that we can control the outcomes of life. Kathryn and I have noted that every conversation with every parent in the CICU (regardless of their previous religious persuasion or beliefs about God) includes talk of prayer: “We’ll be praying Samuel,” “Your son is in our prayers,” etc. That, too, is why God seems so present in trials – we are most apt to call to Him for help and to come to Him on His terms when we are out of options ourselves.
For Kathryn and I our hope and prayer for all who read this blog is not that you would have hardships. Those will come whether we want them to or not. Our hope and prayer is that you would be able to experience the goodness and grace and love of God as we have, that you would come to God on His terms and experience the peace and rest and comfort that we have in His Son, Jesus. In Jesus’s own words: "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world” (John 16:33).
Psalms 34:18a – “The LORD is close to the brokenhearted…”
Matthew 11:28-30 – "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."
Matthew 5:4 – “Blessed are those who mourn, for they will be comforted.”
1 Peter 5:6-7 – “Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.”
Psalm – 121:2 –
“My help comes from the LORD,
the Maker of heaven and earth. “
These are some of the verses that I have been thinking about a lot these days. Many of them are verses that various ones of you have offered through your comments or emails. Thank you. I have been familiar with all of these verses/truths for some time, but I have been seeing and experiencing them in a new light for the last month. I would never wish what Kathryn and I are going through on our worst enemies. Hopefully, in my finest moments, I would not wish trials of any kind on anyone. At the same time, I wish for everyone to experience the peace, nearness, rest, comfort, care, and help of the Lord the way that we have in these days. It is amazing, humbling, ingratiating, and life-changing.
Interestingly, in most of these verses there is a clear step that we need to take to receive what the Lord offers us. He does not force Himself on us. At the same time, all that he asks His grace will provide.
If offered the “peace that passes understanding” (see Philippians 3:6-7 above), we’d all take it in a heartbeat. But what is required of us to receive this peace, demands more than we might initially think. We need to pray to God about the things that make us anxious, AND do it with gratefulness (“thanksgiving”). It’s been that “with thanksgiving” part that has been especially challenging for me recently. Many, many times my heart has been anxious. Many, many, many times we have prayed and petitioned God. But I’ve had to discipline myself to thank Him for His goodness all around me (and once I get started, I realize that this is not a short list). Before long, I find that I feel peaceful; a God who has so richly poured out his blessings on my life is a God who I want to trust. Of course, all of this is not a formula, but a relationship based on grace, and the struggle is constant because God does not promise to answer our prayers and petitions the way we ask Him to. But then, the alternative is to be anxious about things that are outside of our control…which is exhausting and entirely unproductive. So we pray and give thanks. The peace we have felt through much of this season is inexplicable apart from God.
I have similar thoughts about nearly all of the verses above, but I’ll summarize my thoughts by saying that what God offers us through His Son, Jesus, is life and peace and rest and care and help and more. He invites us to come to Him and find these things there. Not on our terms, but on His terms. Not bartering, but humbly asking. Not because He owes it to us, but because He is generous. Not because we deserve it, but because He is merciful and gracious. Not because we know what we need, but because He knows what we need.
In this season of desperation, heartbreak and helplessness for Kathryn and I, this has been easier to do than in “normal” life because we have never had even the illusion of control over our circumstances. But that seems to be what trials do – they strip us of the illusion that we can control the outcomes of life. Kathryn and I have noted that every conversation with every parent in the CICU (regardless of their previous religious persuasion or beliefs about God) includes talk of prayer: “We’ll be praying Samuel,” “Your son is in our prayers,” etc. That, too, is why God seems so present in trials – we are most apt to call to Him for help and to come to Him on His terms when we are out of options ourselves.
For Kathryn and I our hope and prayer for all who read this blog is not that you would have hardships. Those will come whether we want them to or not. Our hope and prayer is that you would be able to experience the goodness and grace and love of God as we have, that you would come to God on His terms and experience the peace and rest and comfort that we have in His Son, Jesus. In Jesus’s own words: "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world” (John 16:33).
More Pictures By Cami
The first picture is of Caleb whispering to Samuel, "I love you, Samuel."Second: Momma kissing Samuel
Third: Daddy holding Samuel's hand
Fourth: Caleb and Joel walking in to see their baby brother -- So excited!
Fifth: Joel and Daddy looking at Samuel with love
Saturday, August 29, 2009
Birthdays, Gifts, and Little Things
Today is Bryan's 32nd birthday. Caleb and Joel came to the hospital with my mom and the Thiels (my aunt, uncle, and 2 college-aged cousins) to celebrate. They set up a table in the cafeteria with subs, birthday plates, and cake and brought some presents and cards. The hospital clowns came over and sang to Bryan, and Caleb and Joel thought they were pretty silly. It was a nice time to celebrate Bryan.
After lunch we brought Caleb and Joel back up to see Samuel again for a few minutes. Before we came back, we told them that Samuel is getting sicker, and doctors don't think he will get better. We explained that if he doesn't get better, he will go to Heaven to be with God and Jesus. Caleb replied, "I'm a little bit sad about that." We told him we were too. We spent about 10 minutes with Samuel and sang him some songs, and then we four prayed over him. Joel wanted to kiss him and hold his hand, but Caleb was more reserved. Afterwards, while Bryan and I played hide-and-seek with C & J in garden, the Thiels got to come back and see Samuel too.
Richard, our favorite nurse, is taking care of Samuel today. When we came in this morning, he said, "Samuel told me he wants to give his brothers a truck or something. I thought I would go down to the gift store and get them an ambulance and a fire truck. Would that be okay?" More kindness. I am continually moved by the kindnesses of others. Richard brought us the cars in gift bags and then gave us stickers and markers to decorate them. They were a huge hit with Caleb and Joel, and they love their gifts from their baby brother. And our night nurse from last night made a card that hangs at the front of Samuel's bed. It says, "Happy Birthday, Daddy," and inside it reads, "I love you! Love, Samuel." Richard thought to add Samuel's handprint to the card. Even more kindness. And yesterday I was so tired, I was falling asleep while reading aloud to Samuel and Bryan. Our nurse, Mary Beth, took me for a walk through the employee part of the hospital and bought me a fancy coffee from the coffee shop downstairs. How do these nurses and hospital staff have the emotional space to enter into our pain and love us so kindly in it? I would expect them to keep their distance and protect their own hearts. It is a continual blessing to feel so cared for by these new friends and wonderful people.
Samuel is much the same today. He seems to have a new steady status where his numbers hover. Each morning they do lab work, and his numbers indicating liver and kidney failure continue to creep up.
We consider each day with Samuel as a gift. They are days we will never get back, and I try to cherish and enjoy each one we get. As I rejoice in the life of my son, all the little stuff of life becomes just that: little. In light of life and death and making each moment count and loving Samuel just as he is, I can let the little stuff stay little. Down the road, I hope I remember what really matters. And I hope I can remember that each day is a chance to follow God and rest in Him, a chance to truly love and embrace the people in my life, a chance to rejoice in what God has given me. Today we rejoice in Bryan's life and in Samuel's life. Thank you, Lord, for granting me such amazing boys to love. And thank you for this day with them.
After lunch we brought Caleb and Joel back up to see Samuel again for a few minutes. Before we came back, we told them that Samuel is getting sicker, and doctors don't think he will get better. We explained that if he doesn't get better, he will go to Heaven to be with God and Jesus. Caleb replied, "I'm a little bit sad about that." We told him we were too. We spent about 10 minutes with Samuel and sang him some songs, and then we four prayed over him. Joel wanted to kiss him and hold his hand, but Caleb was more reserved. Afterwards, while Bryan and I played hide-and-seek with C & J in garden, the Thiels got to come back and see Samuel too.
Richard, our favorite nurse, is taking care of Samuel today. When we came in this morning, he said, "Samuel told me he wants to give his brothers a truck or something. I thought I would go down to the gift store and get them an ambulance and a fire truck. Would that be okay?" More kindness. I am continually moved by the kindnesses of others. Richard brought us the cars in gift bags and then gave us stickers and markers to decorate them. They were a huge hit with Caleb and Joel, and they love their gifts from their baby brother. And our night nurse from last night made a card that hangs at the front of Samuel's bed. It says, "Happy Birthday, Daddy," and inside it reads, "I love you! Love, Samuel." Richard thought to add Samuel's handprint to the card. Even more kindness. And yesterday I was so tired, I was falling asleep while reading aloud to Samuel and Bryan. Our nurse, Mary Beth, took me for a walk through the employee part of the hospital and bought me a fancy coffee from the coffee shop downstairs. How do these nurses and hospital staff have the emotional space to enter into our pain and love us so kindly in it? I would expect them to keep their distance and protect their own hearts. It is a continual blessing to feel so cared for by these new friends and wonderful people.
Samuel is much the same today. He seems to have a new steady status where his numbers hover. Each morning they do lab work, and his numbers indicating liver and kidney failure continue to creep up.
We consider each day with Samuel as a gift. They are days we will never get back, and I try to cherish and enjoy each one we get. As I rejoice in the life of my son, all the little stuff of life becomes just that: little. In light of life and death and making each moment count and loving Samuel just as he is, I can let the little stuff stay little. Down the road, I hope I remember what really matters. And I hope I can remember that each day is a chance to follow God and rest in Him, a chance to truly love and embrace the people in my life, a chance to rejoice in what God has given me. Today we rejoice in Bryan's life and in Samuel's life. Thank you, Lord, for granting me such amazing boys to love. And thank you for this day with them.
Friday, August 28, 2009
Some Photos by Cami
Joel meeting his brother for the first time. He was so happy to be the big brother. Caleb counting Samuel's toes. Our family of 5 -- together for the first time. Sweet Samuel.
Peaceful Day and Hard Conversations
Kathryn’s aunt and uncle served us again last night. They stayed at our house last night with Caleb and Joel, allowing Pat, Kathryn’s mom, to be here at the hospital. She stayed through the night by her grandson’s bedside and loved it. In fact, amazingly, after a nap today, she is coming to do it again. This gives Kathryn and I some peaceful and much-needed hours of sleep knowing that our Little Mystery is being loved on.
There is little change in Samuel’s status today. His oxygen saturation dropped 10% earlier today, and he had some bad blood gas numbers. They tried to compensate by increasing his ventilation. This helped him recover from most of the drop. The ventilation increases are getting harder and riskier to do: he is on the oscillator (the strongest ventilator) receiving 100% oxygen (5x as concentrated as what you and I breathe) at settings normally reserved for a 2-3 year old. Most of his numbers are a little bit worse today than they were yesterday.
Kathryn and I have had relatively peaceful hearts for most of the day. Heavy, but peaceful. This, once again, is the grace and kindness of God. We know that He is near to us. Kathryn reminded me this morning that what we will want to remember is having enjoyed these moments with our son. I needed to hear it. I was overwhelmed and struggling.
When we weren’t reading to, praying with, singing to, or talking to Samuel today, most of the rest of our time was been spent in very difficult end of life conversations – gathering information, understanding our options, discussing and praying through them. We’ve both remarked that we can’t believe that we even have to have these conversations or make these decisions. Never in our worst-case scenarios did we imagine this. I am so grateful for my wife and our marriage. I can’t imagine going through this with someone that I did not love, like, and respect. She is an amazing woman, wife, and mother. We continue to pray for a miraculous healing, but find that more and more we are praying for some of these other pressing matters. Please join us. Please pray for wisdom, unity, and discernment for Kathryn and I. Please pray that the Lord would go before us in all of these matters. Our greatest desire is that, should Samuel, in fact, die, we be able to hold him in his final moments and usher Him into the Lord’s care. Kathryn has only held him for one minute when he was first born. I have never held him. We crave the opportunity and desire such a memory.
A very dear friend of ours stopped by unexpectedly today. Truthfully, it was kind of unexpected for her too. We were so glad that she got to meet Samuel briefly.
A quick update on a couple of our CICU neighbors that you have prayed through over time. S – the first “S” who we thought was 10, but is actually 14 – may be going home tomorrow. The doctors cannot believe the recovery that he has made. They are calling him a little miracle. We’ve gotten to know not just the family, but S himself the last few days - a neat young man. The other S –- a 20-month old girl -- for whom we asked for prayer just a couple of nights ago is doing much better. The news from that night was essentially the best-case scenario. She is not entirely out of the woods yet, but she was moved to the Cardiac Step-down Unit this morning. That was a surprise both to us and her parents. We thank God for this good news and for these answers to our prayers. Thank you for joining us in prayer. Please keep it up. We need it.
There is little change in Samuel’s status today. His oxygen saturation dropped 10% earlier today, and he had some bad blood gas numbers. They tried to compensate by increasing his ventilation. This helped him recover from most of the drop. The ventilation increases are getting harder and riskier to do: he is on the oscillator (the strongest ventilator) receiving 100% oxygen (5x as concentrated as what you and I breathe) at settings normally reserved for a 2-3 year old. Most of his numbers are a little bit worse today than they were yesterday.
Kathryn and I have had relatively peaceful hearts for most of the day. Heavy, but peaceful. This, once again, is the grace and kindness of God. We know that He is near to us. Kathryn reminded me this morning that what we will want to remember is having enjoyed these moments with our son. I needed to hear it. I was overwhelmed and struggling.
When we weren’t reading to, praying with, singing to, or talking to Samuel today, most of the rest of our time was been spent in very difficult end of life conversations – gathering information, understanding our options, discussing and praying through them. We’ve both remarked that we can’t believe that we even have to have these conversations or make these decisions. Never in our worst-case scenarios did we imagine this. I am so grateful for my wife and our marriage. I can’t imagine going through this with someone that I did not love, like, and respect. She is an amazing woman, wife, and mother. We continue to pray for a miraculous healing, but find that more and more we are praying for some of these other pressing matters. Please join us. Please pray for wisdom, unity, and discernment for Kathryn and I. Please pray that the Lord would go before us in all of these matters. Our greatest desire is that, should Samuel, in fact, die, we be able to hold him in his final moments and usher Him into the Lord’s care. Kathryn has only held him for one minute when he was first born. I have never held him. We crave the opportunity and desire such a memory.
A very dear friend of ours stopped by unexpectedly today. Truthfully, it was kind of unexpected for her too. We were so glad that she got to meet Samuel briefly.
A quick update on a couple of our CICU neighbors that you have prayed through over time. S – the first “S” who we thought was 10, but is actually 14 – may be going home tomorrow. The doctors cannot believe the recovery that he has made. They are calling him a little miracle. We’ve gotten to know not just the family, but S himself the last few days - a neat young man. The other S –- a 20-month old girl -- for whom we asked for prayer just a couple of nights ago is doing much better. The news from that night was essentially the best-case scenario. She is not entirely out of the woods yet, but she was moved to the Cardiac Step-down Unit this morning. That was a surprise both to us and her parents. We thank God for this good news and for these answers to our prayers. Thank you for joining us in prayer. Please keep it up. We need it.
Thursday, August 27, 2009
Weary and Waiting
It was a long night for Samuel, and it's been a long day so far. Samuel's oxygen to his brain stays very low, and currently his oxygen saturation to his body is quite low too. He is continuing to decline.
We had a long talk with Samuel's attending cardiologist this morning, and he answered all our questions. He says Samuel will not be a survivor, and he called it "inevitable." He encouraged us to talk about what decisions we want to make -- if we want a DNR, if we want them to do chest compressions if his heart stops, if we want to take him off all the machines. We have no idea how to even approach these questions.
We just spoke with the nefrologist (kidney doctor), and he told us dialysis is not a good option for Samuel, and he wouldn't do it if Samuel was his son. At best, he thinks Samuel would pass away less puffy. He said that medicine is out of options for our little guy, and what we need is a miracle -- which by nature don't happen very often, but sometimes they do.
I had a very restless night last night. I stayed with Samuel until 2am at which point I was falling asleep on his guardrails. We were up at 6am to spend more time with him until shift change. We went back to bed during shift change, though I don't think much sleep happened.
When we came back in to see Samuel, he looked signifcantly worse than just a few hours before. We shed a lot of tears this morning, and the chaplain spent some time with us. Many nurses have been stopping by and giving us hugs -- which I have to say surprises me every time. I don't know how they have the emotional margin to hurt with all the parents who go through this pain. One nurse gave me a hug in the middle of the hall earlier which resulted in me sobbing, and another hugged me in the middle of the cafeteria with the same result. I am getting used to crying in very public places. Even the girl who serves the cafeteria food asked how I'm hanging in there. Compassion is both a beautiful and painful thing. It hurts me every time people show me compassion, and yet it blesses me too. And compassion by nature hurts those who show it to us.
Bryan and I asked about a private room for Samuel because our little dock is in the middle of the CICU. There are no walls between docks, and the desk around which doctors, RT's, and fellows cluster is right across from us -- 10 feet away. There are curtains they can pull around our space, and they have done so, but we feel exposed. However, moving him is a risky proposition, and, again, I can't help but wonder if God has us in the middle of everything for a reason. How can we be a light for Him even in the midst of these dark days? I pray for grace to love others and to weep for and rejoice with others even as our hearts are heavy and burdened for our own pain.
We are weary. We are sad. It is painful to see our son this way. Honestly, he looks dreadful. I am so glad Caleb and Joel came yesterday and not today. God was gracious in that. We so appreciate your prayers. This could go on and on, and it could end very suddenly. When I look ahead, it's overwhelming to imagine some unknown number of these days still to come, but God has given us the strength and grace for each day, so I will trust Him to do the same for each and every day ahead. Keep praying. We all need it.
We had a long talk with Samuel's attending cardiologist this morning, and he answered all our questions. He says Samuel will not be a survivor, and he called it "inevitable." He encouraged us to talk about what decisions we want to make -- if we want a DNR, if we want them to do chest compressions if his heart stops, if we want to take him off all the machines. We have no idea how to even approach these questions.
We just spoke with the nefrologist (kidney doctor), and he told us dialysis is not a good option for Samuel, and he wouldn't do it if Samuel was his son. At best, he thinks Samuel would pass away less puffy. He said that medicine is out of options for our little guy, and what we need is a miracle -- which by nature don't happen very often, but sometimes they do.
I had a very restless night last night. I stayed with Samuel until 2am at which point I was falling asleep on his guardrails. We were up at 6am to spend more time with him until shift change. We went back to bed during shift change, though I don't think much sleep happened.
When we came back in to see Samuel, he looked signifcantly worse than just a few hours before. We shed a lot of tears this morning, and the chaplain spent some time with us. Many nurses have been stopping by and giving us hugs -- which I have to say surprises me every time. I don't know how they have the emotional margin to hurt with all the parents who go through this pain. One nurse gave me a hug in the middle of the hall earlier which resulted in me sobbing, and another hugged me in the middle of the cafeteria with the same result. I am getting used to crying in very public places. Even the girl who serves the cafeteria food asked how I'm hanging in there. Compassion is both a beautiful and painful thing. It hurts me every time people show me compassion, and yet it blesses me too. And compassion by nature hurts those who show it to us.
Bryan and I asked about a private room for Samuel because our little dock is in the middle of the CICU. There are no walls between docks, and the desk around which doctors, RT's, and fellows cluster is right across from us -- 10 feet away. There are curtains they can pull around our space, and they have done so, but we feel exposed. However, moving him is a risky proposition, and, again, I can't help but wonder if God has us in the middle of everything for a reason. How can we be a light for Him even in the midst of these dark days? I pray for grace to love others and to weep for and rejoice with others even as our hearts are heavy and burdened for our own pain.
We are weary. We are sad. It is painful to see our son this way. Honestly, he looks dreadful. I am so glad Caleb and Joel came yesterday and not today. God was gracious in that. We so appreciate your prayers. This could go on and on, and it could end very suddenly. When I look ahead, it's overwhelming to imagine some unknown number of these days still to come, but God has given us the strength and grace for each day, so I will trust Him to do the same for each and every day ahead. Keep praying. We all need it.
Quick Update
Just a really quick update on that last paragraph from Bryan's post a few hours ago...
Samuel's stats have improved though they're not stellar. Specifically his oxygen saturation is a little low (though not bad) and the amount of oxygen getting to his brain is still low. His blood gases are much better.
S, our neighbor, is not the same S we mentioned a week ago. This S is a 20 month old little girl who just had her 3rd heart surgery yesterday. Doctors told her parents she would not live, and they have spent many, many months at Egleston over the last year and a half. She was having seizures when we walked in from shift change. They did a CT scan, and she has a brain bleed. Her parents told us this is not as bad as they feared (she had a stroke the last time she had surgery). Be praying for her and for her folks. What a long road they have traveled!
And as for the neighbor S from last week, we spoke with him and his grandma for about 30 minutes this evening. He's doing great! He's a 14 year old boy who got a virus that attacked his heart and ended up on the heart/lung bypass machine. Now he's up and around and should be going back to his freshman year of high school soon. Thanks for lifting him up in prayer.
Ok, I am off to try and get a few hours of sleep. I am praying Samuel's stats trend upwards and that tomorrow is a thoroughly uneventful day with some progress. I won't lie; it's exhausting to be on this constant rollercoaster of declines and improvements. I have to brace myself for each new day. But thankfully I am never alone, and I have this precious boy to love for however many days God gives me to be with him. Bryan and I are so thankful for the 25 days we've had with him so far. Though in many ways the last three and half weeks have been the hardest and worst of my life, I wouldn't trade them for the world. The time I get with this son of mine is priceless and beyond compare. What a joy to get to love Samuel each day.
Samuel's stats have improved though they're not stellar. Specifically his oxygen saturation is a little low (though not bad) and the amount of oxygen getting to his brain is still low. His blood gases are much better.
S, our neighbor, is not the same S we mentioned a week ago. This S is a 20 month old little girl who just had her 3rd heart surgery yesterday. Doctors told her parents she would not live, and they have spent many, many months at Egleston over the last year and a half. She was having seizures when we walked in from shift change. They did a CT scan, and she has a brain bleed. Her parents told us this is not as bad as they feared (she had a stroke the last time she had surgery). Be praying for her and for her folks. What a long road they have traveled!
And as for the neighbor S from last week, we spoke with him and his grandma for about 30 minutes this evening. He's doing great! He's a 14 year old boy who got a virus that attacked his heart and ended up on the heart/lung bypass machine. Now he's up and around and should be going back to his freshman year of high school soon. Thanks for lifting him up in prayer.
Ok, I am off to try and get a few hours of sleep. I am praying Samuel's stats trend upwards and that tomorrow is a thoroughly uneventful day with some progress. I won't lie; it's exhausting to be on this constant rollercoaster of declines and improvements. I have to brace myself for each new day. But thankfully I am never alone, and I have this precious boy to love for however many days God gives me to be with him. Bryan and I are so thankful for the 25 days we've had with him so far. Though in many ways the last three and half weeks have been the hardest and worst of my life, I wouldn't trade them for the world. The time I get with this son of mine is priceless and beyond compare. What a joy to get to love Samuel each day.
Wednesday, August 26, 2009
Family Day and Please Pray
Thank you all for your prayers. Today has gone well. The boys were in a great mood and super excited to see their mom and dad. Kathryn and I were both anxious this morning about how everything would go. We knew that it would be good for them, but I was concerned about how Kathryn and I would hold up. We wanted this to be a fun and memorable day for them. It was clearly good for them to see Samuel and to have some time with us. In the end, I think that it was also good for us to spend some time with our healthy children (while still being near Samuel) and to re-enter their worlds for a little bit.
Once again, God went before us and provided all we needed. Cami, the photographer, was great with the boys; she actually used to be a child life specialist herself. Having seen some of her work, I am excited to get our pictures back (http://www.capturedbycam.com). She does some of her work with a non-profit called Now I Lay Me Down To Sleep (NILMDTS) that photographs critically ill children free of charge. What a blessing! The photos will be cherished. Stephanie, the staff child life specialist, was also great with the boys. Before we went back to the CICU, she showed Caleb and Joel a doll that had some of the wires, probes, lines, and tubes that Samuel has. She brought doctors’ toys and the boys were able to use the stethoscope, take the blood pressure of whatever they could get the cuff around, give medicine through the IV line, etc. They thought that it was grand. They each walked away with a mask, a surgeon’s gown and hat, and a plastic syringe (not sharp… don’t worry).
Stephanie and some of the folks on the CICU floor paved the way for us. It was one thing to obtain approval for the boys to come in, but another thing to have a photographer. The hospital’s risk management was not excited, but Cami had been to Egleston many times before. Whatever conversations were had and whatever strings were pulled all happened apart from us knowing it. Also, while we were there as a family several other staff (nurses, secretaries, and respiratory therapists) who we have gotten to know came over to say ‘hi’ and meet the boys. One of them brought the boys some treats. We felt very well cared for by the staff. We are blessed.
Our time in the CICU was precious, chaotic, wonderful, painful, fun, a bit stressful, and very good. Earlier in the morning, when I told Caleb that he would get to see Samuel today, he was so thrilled. Caleb and Joel each got to hold Samuel’s hand, kiss his head, rub and kiss his leg and foot, and whisper in his ear. The boys wanted to know what all the meds were on Samuel’s medicine tree (the stand that holds all of his pumps and drips). We got all three boys’ hand prints on one sheet, and Samuel’s hand and foot prints on another.
Samuel has had a couple pretty stable days. In fact, Dr. Cuadrado – Samuel’s primary attending cardiologist – just told us that Samuel has actually approved a hair over the last day. He then reminded us that while sick kids can go downhill in a moment, they take a long time to get better. Too true. It is a sad but true reality of our fallen, human state that it always takes longer to build than to destroy.
The paragraphs above were written earlier today and I had intended to write more, but we just got back in to see Samuel after the shift change and he has a couple of numbers that are frighteningly low. They don’t seem to have great answers for how to help him given how much support he is already on. Meanwhile, right next to us, S – whose parents C & M we just spent 3 hours with – is in really bad shape as well. Please pray for Samuel and S. This is a very stressful place right now. The presence of God is needed here.
Once again, God went before us and provided all we needed. Cami, the photographer, was great with the boys; she actually used to be a child life specialist herself. Having seen some of her work, I am excited to get our pictures back (http://www.capturedbycam.com). She does some of her work with a non-profit called Now I Lay Me Down To Sleep (NILMDTS) that photographs critically ill children free of charge. What a blessing! The photos will be cherished. Stephanie, the staff child life specialist, was also great with the boys. Before we went back to the CICU, she showed Caleb and Joel a doll that had some of the wires, probes, lines, and tubes that Samuel has. She brought doctors’ toys and the boys were able to use the stethoscope, take the blood pressure of whatever they could get the cuff around, give medicine through the IV line, etc. They thought that it was grand. They each walked away with a mask, a surgeon’s gown and hat, and a plastic syringe (not sharp… don’t worry).
Stephanie and some of the folks on the CICU floor paved the way for us. It was one thing to obtain approval for the boys to come in, but another thing to have a photographer. The hospital’s risk management was not excited, but Cami had been to Egleston many times before. Whatever conversations were had and whatever strings were pulled all happened apart from us knowing it. Also, while we were there as a family several other staff (nurses, secretaries, and respiratory therapists) who we have gotten to know came over to say ‘hi’ and meet the boys. One of them brought the boys some treats. We felt very well cared for by the staff. We are blessed.
Our time in the CICU was precious, chaotic, wonderful, painful, fun, a bit stressful, and very good. Earlier in the morning, when I told Caleb that he would get to see Samuel today, he was so thrilled. Caleb and Joel each got to hold Samuel’s hand, kiss his head, rub and kiss his leg and foot, and whisper in his ear. The boys wanted to know what all the meds were on Samuel’s medicine tree (the stand that holds all of his pumps and drips). We got all three boys’ hand prints on one sheet, and Samuel’s hand and foot prints on another.
Samuel has had a couple pretty stable days. In fact, Dr. Cuadrado – Samuel’s primary attending cardiologist – just told us that Samuel has actually approved a hair over the last day. He then reminded us that while sick kids can go downhill in a moment, they take a long time to get better. Too true. It is a sad but true reality of our fallen, human state that it always takes longer to build than to destroy.
The paragraphs above were written earlier today and I had intended to write more, but we just got back in to see Samuel after the shift change and he has a couple of numbers that are frighteningly low. They don’t seem to have great answers for how to help him given how much support he is already on. Meanwhile, right next to us, S – whose parents C & M we just spent 3 hours with – is in really bad shape as well. Please pray for Samuel and S. This is a very stressful place right now. The presence of God is needed here.
Playing Doctor at the Hospital
The boys had a great time seeing Samuel and playing doctor. They got to play with a doll who had leads, tubes, etc before coming into the CICU. And then they got to prance around in their doctor gear. It was a blessed morning. Thanks for praying!
Tuesday, August 25, 2009
A Significant Date Followed By a Significant Day
Today is Samuel’s due date. August 1st seems like sooooo long ago to us. Lord, thank you for giving us these 24 extra days with our precious son, Samuel.
It was actually a pretty good day for Samuel. In fact, it was the first day in the last 5 or 6 in which he improved a bit: lung x-rays better, billirubin numbers down, urine output up a bit, etc. They were small improvements, but we’ll take them. Though, he is still definitely critically ill, we are grateful for another day and for any improvements. The flip side of the coin is that we’ve both experienced another case of emotional whiplash.
Kathryn’s uncle very graciously took Caleb and Joel for most of the day today. That allowed Kathryn’s mom (Pat) to come down and spend some time with Samuel. Pat brought with her some fresh clothes, some goodies, and a bag full of cards that had arrived through the mail or personal delivery in the last few days. K and I opened each one of them by Samuel’s bedside and read each card out loud. We were blown away by your generosity – gas cards, Starbucks cards, restaurant cards, CDs of music, etc. We count ourselves “ridiculously blessed” (to steal a phrase from John Woodall) to be surrounded by such a loving and supportive community. One of the great gifts that you all have given us in this season is the ability to give our attention where it is most needed. We have not had to worry about meals, childcare, lawn care, house cleaning, etc. Experiencing the grace of God poured out so consistently and abundantly in our lives is a humbling thing. As we read the cards, we told Samuel about the giver, about how you love him, and are praying for him. He said to say, “Merci.” He hasn’t learned English yet. ☺
A college friend of Kathryn’s and mine surprised us by stopping by the hospital very briefly today. He lives a couple of miles from Egleston and just wanted to tell us he loves us, is praying for us, and is thinking about us. It was good to see him.
K & I just had the privilege of participating in his nightly bath for the second time. It is satisfying to be able to care for his needs in a tangible way. That is what parents of newborns do, and what we’ve been able to do so little of. Because Samuel is so sick, the CICU is allowing us a few more visitors. In fact, K’s aunt and uncle are here right now spending a little time with their great (really great, in fact) nephew. We are so grateful for Colleen and Dave.
You can be praying for us about tomorrow. We haven’t seen the boys since Sunday morning, and they are coming with Grandma (“Gab’m”) in the morning. When Kathryn was chatting with our eldest on the phone tonight, she hung up with him sobbing. On the surface it was because his beloved stuffed animals, Puppy and Spikit, were left back at K’s uncle’s and aunt’s house (they are his comfort and true friends), but missing mommy and daddy and the general unpredictability of the last few weeks were certainly the undercurrent. (No worries, his friends have been retrieved.)
We are also meeting with a staff child life specialist, Stephanie, who will help them understand a little of what is going on with their little brother. We may play doctor a bit and make some pictures/crafts for Samuel. We are grateful for Stephanie. This is all new territory for us, and it is hard to know how/what to communicate to Caleb and Joel. After doing that for a bit, we are actually going to be able to bring the boys back to the CICU; we’ve been given a 30 minute window. This will be Joel’s first time (and Caleb’s second) seeing his little brother. We’ll try to give them some jobs to do to feel useful: put up the pictures, place stuffed animals, hold his hand, get Samuel’s feet and hand prints. Friends of ours from our small group through church have very kindly set up a photographer to come and take some family pictures for us. Thank you Jennifer and Tracy for serving us in such a tangible and creative way. After this, Kathryn and I plan to tell C & J that their little brother is very sick and may not come home.
We are anxious about all of this. Our hearts are heavy when we realize that this may be the only time the five of us are all together. That, of course, assumes that Samuel makes it till tomorrow morning. Please pray that the Lord grants us tomorrow with Samuel. Please pray for our reunion with the boys tomorrow morning. Please pray for our time with the child life specialist. Please pray for our time with the five of us – we want this to be a happy and memorable time, but our hearts ache every time we think of it. Please pray for our conversation with Caleb and Joel afterwards. When it comes to praying for these things I find myself leaning hard into the truth of Romans 8:26-27: “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will.”
Thank you all for your continued generosity expressed in so many ways: following our story, prayers, words of encouragement, yard work, gift cards, house cleaning, meals, etc. This is the church, the body of Christ, at its best. We are humbled and grateful that, for some reason, we are the recipients of its/your love. Merci beaucoup!
It was actually a pretty good day for Samuel. In fact, it was the first day in the last 5 or 6 in which he improved a bit: lung x-rays better, billirubin numbers down, urine output up a bit, etc. They were small improvements, but we’ll take them. Though, he is still definitely critically ill, we are grateful for another day and for any improvements. The flip side of the coin is that we’ve both experienced another case of emotional whiplash.
Kathryn’s uncle very graciously took Caleb and Joel for most of the day today. That allowed Kathryn’s mom (Pat) to come down and spend some time with Samuel. Pat brought with her some fresh clothes, some goodies, and a bag full of cards that had arrived through the mail or personal delivery in the last few days. K and I opened each one of them by Samuel’s bedside and read each card out loud. We were blown away by your generosity – gas cards, Starbucks cards, restaurant cards, CDs of music, etc. We count ourselves “ridiculously blessed” (to steal a phrase from John Woodall) to be surrounded by such a loving and supportive community. One of the great gifts that you all have given us in this season is the ability to give our attention where it is most needed. We have not had to worry about meals, childcare, lawn care, house cleaning, etc. Experiencing the grace of God poured out so consistently and abundantly in our lives is a humbling thing. As we read the cards, we told Samuel about the giver, about how you love him, and are praying for him. He said to say, “Merci.” He hasn’t learned English yet. ☺
A college friend of Kathryn’s and mine surprised us by stopping by the hospital very briefly today. He lives a couple of miles from Egleston and just wanted to tell us he loves us, is praying for us, and is thinking about us. It was good to see him.
K & I just had the privilege of participating in his nightly bath for the second time. It is satisfying to be able to care for his needs in a tangible way. That is what parents of newborns do, and what we’ve been able to do so little of. Because Samuel is so sick, the CICU is allowing us a few more visitors. In fact, K’s aunt and uncle are here right now spending a little time with their great (really great, in fact) nephew. We are so grateful for Colleen and Dave.
You can be praying for us about tomorrow. We haven’t seen the boys since Sunday morning, and they are coming with Grandma (“Gab’m”) in the morning. When Kathryn was chatting with our eldest on the phone tonight, she hung up with him sobbing. On the surface it was because his beloved stuffed animals, Puppy and Spikit, were left back at K’s uncle’s and aunt’s house (they are his comfort and true friends), but missing mommy and daddy and the general unpredictability of the last few weeks were certainly the undercurrent. (No worries, his friends have been retrieved.)
We are also meeting with a staff child life specialist, Stephanie, who will help them understand a little of what is going on with their little brother. We may play doctor a bit and make some pictures/crafts for Samuel. We are grateful for Stephanie. This is all new territory for us, and it is hard to know how/what to communicate to Caleb and Joel. After doing that for a bit, we are actually going to be able to bring the boys back to the CICU; we’ve been given a 30 minute window. This will be Joel’s first time (and Caleb’s second) seeing his little brother. We’ll try to give them some jobs to do to feel useful: put up the pictures, place stuffed animals, hold his hand, get Samuel’s feet and hand prints. Friends of ours from our small group through church have very kindly set up a photographer to come and take some family pictures for us. Thank you Jennifer and Tracy for serving us in such a tangible and creative way. After this, Kathryn and I plan to tell C & J that their little brother is very sick and may not come home.
We are anxious about all of this. Our hearts are heavy when we realize that this may be the only time the five of us are all together. That, of course, assumes that Samuel makes it till tomorrow morning. Please pray that the Lord grants us tomorrow with Samuel. Please pray for our reunion with the boys tomorrow morning. Please pray for our time with the child life specialist. Please pray for our time with the five of us – we want this to be a happy and memorable time, but our hearts ache every time we think of it. Please pray for our conversation with Caleb and Joel afterwards. When it comes to praying for these things I find myself leaning hard into the truth of Romans 8:26-27: “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will.”
Thank you all for your continued generosity expressed in so many ways: following our story, prayers, words of encouragement, yard work, gift cards, house cleaning, meals, etc. This is the church, the body of Christ, at its best. We are humbled and grateful that, for some reason, we are the recipients of its/your love. Merci beaucoup!
Monday, August 24, 2009
It's Up to God...
Bryan and I are sitting with our sweet Samuel now. We've decided to stay at the hospital again tonight. It was a hard day for me and B, though Samuel has steadily endured it. Earlier in the day, one of the cardiologists, who isn't exactly gentle in his delivery, told us that he's very worried about Samuel and doesn't think he will be a survivor. He says Samuel is much sicker today than he was last week. He suggested we have him baptized if that's something that's important to us and said that he thinks Samuel could go quickly if he starts to go downhill. This wasn't surprising news to us given yesterday's scare.
Despite that "meeting," Bryan and I had a relatively calm and even joyful afternoon. We read to Samuel, chatted with Richard (our nurse), laughed over lunch, etc. It's kind of amazing to me when Bryan and I are genuinely able to laugh about something in these days. And yet it happens pretty often. I am thankful for the joyful moments and a funny husband.
The doctors had their weekly cath. conference this afternoon, and honestly, I had kind of forgotten about it until the same cardiologist I mentioned above wheeled his rolly chair over to Samuel's station. The doctors spent a long time discussing Samuel's case, and the conclusion was that they are out of ideas and options for Samuel. They don't really understand what's going on, and though they tossed out many ideas in the conference, there were always more reasons to not pursue a course of action than to pursue it. He mentioned ECMO (bypass machine), dialysis, MRI, CAT-scan, surgery, heart transplant, heart/lung transplant, etc, etc. They even concluded that the new option from this morning to repair his pulmonary valve in the cath lab, was based on faulty information from the echocardiogram. Essentially the doctors think they're all deadends for Samuel. This doctor told us we need to start considering how to proceed if Samuel's heart stops -- whether or not to resuscitate him. He even mentioned the possibility of taking Samuel of all the machines at some point and letting him go on his own.
Over the next hour, we spoke with several doctors who gathered around. One is our pediatric cardiologist, Dr. Videlefsky, who we like very much. He has called the hospital every day since Samuel's birth to check on us and Samuel. When I saw him coming, I just felt so bad for him. I know that sounds weird, but this situation has been truly hard on him. However, I was so glad he came to talk to us because he is so kind and gentle in his delivery and was very concerned about our well-being. He told us that he just doesn't understand what's going on with Samuel. He can't figure it out. It is so frustrating for him not to have answers for us, and he repeatedly asked us what we understood, if we had any ideas we wanted them to pursue, what our thoughts were, etc. It's not often we're asked what our thoughts regarding Samuel's care are. He pleaded with us to let him be a mediator with the cardiologists here if we have a course of care we want the docs to pursue. I think he was even teary-eyed numerous times in our conversation. I think compassion must be a really trying attribute to have when you're a doctor. It must be so painful to watch others hurt so much and then not be able to ease that pain.
His one idea is to call a doctor he knows at Stanford who "thinks outside the box." He said he doesn't want to give us false hope, but he wants to make sure no stone is unturned. He confessed that his greatest fear is that the doctors are missing something, but he doesn't think it's the case. He remarked how patient we've been and how well we've handled all of this. Another doctor in the circle, Dr. Kim, said that he hates that we're having to have these conversations, but that it's been such a pleasure to interact with us, and he doesn't know how we're doing it. It was a reminder to me that we can show God's goodness and faithfulness even to these doctors.
Anyway, the gist of all the doctors' input is this: we're at a deadend with Samuel's care. They don't have anything else to really try, and they say the course ahead is pretty clear: the doctors do not believe Samuel will survive. During one of the most terrifying conversations that a parent can ever have, Bryan and I were surprisingly peaceful. That can only be from God. I kept thinking, "Ok, it's in God's hands." And truthfully, it always has been. In essence we're in no different place than we've always been -- in God's care. It's up to God, and it always has been. So the doctors are at the end of their resources and knowledge; God is not. I don't know that God will heal Samuel, but I have no less confidence that He can. And if He does, what a way to get all the glory -- when medicine can't take credit for it. In fact, Bryan has thought for awhile now that if our Little Mystery is to get well, it will not be from medicine. We are still peaceful. We know the road ahead is likely one of hardship and pain, but we don't feel like it's written in stone. And we continue to call on God and ask for His healing and grace.
One other thing the doctor's mentioned is genetic testing for me and Bryan. They wonder if there is a connection between my two miscarriages and Samuel's condition, and they think it's important for us to explore that before we have more kids. In some ways, this was the hardest to take because it was unexpected and threatens my dream for more children. But, yet again, this is God's too. He doesn't make mistakes. And I trust Him in this as in all things.
So, God, here we are. Waiting. Samuel is Your child above all else, and our desire is that You do a miracle and heal his whole body -- his lungs, heart, kidneys, and liver. We would love for You to show Your power in this way and to draw the hearts of the doctors, nurses, RT's, and other parents to You. I'd love for You to draw the hearts of those who read these words to You. There is no other place to go with our burdens. And yet, we want what You want, and we surrender our desires to You. Samuel is Yours, and we open our hands and trust You. Carry us through these days, show us Your continuous grace. Use our story for Your greater story. We love You no matter what lies ahead. Grant us strength for each moment, and hold Samuel close to Your heart. Amen.
Despite that "meeting," Bryan and I had a relatively calm and even joyful afternoon. We read to Samuel, chatted with Richard (our nurse), laughed over lunch, etc. It's kind of amazing to me when Bryan and I are genuinely able to laugh about something in these days. And yet it happens pretty often. I am thankful for the joyful moments and a funny husband.
The doctors had their weekly cath. conference this afternoon, and honestly, I had kind of forgotten about it until the same cardiologist I mentioned above wheeled his rolly chair over to Samuel's station. The doctors spent a long time discussing Samuel's case, and the conclusion was that they are out of ideas and options for Samuel. They don't really understand what's going on, and though they tossed out many ideas in the conference, there were always more reasons to not pursue a course of action than to pursue it. He mentioned ECMO (bypass machine), dialysis, MRI, CAT-scan, surgery, heart transplant, heart/lung transplant, etc, etc. They even concluded that the new option from this morning to repair his pulmonary valve in the cath lab, was based on faulty information from the echocardiogram. Essentially the doctors think they're all deadends for Samuel. This doctor told us we need to start considering how to proceed if Samuel's heart stops -- whether or not to resuscitate him. He even mentioned the possibility of taking Samuel of all the machines at some point and letting him go on his own.
Over the next hour, we spoke with several doctors who gathered around. One is our pediatric cardiologist, Dr. Videlefsky, who we like very much. He has called the hospital every day since Samuel's birth to check on us and Samuel. When I saw him coming, I just felt so bad for him. I know that sounds weird, but this situation has been truly hard on him. However, I was so glad he came to talk to us because he is so kind and gentle in his delivery and was very concerned about our well-being. He told us that he just doesn't understand what's going on with Samuel. He can't figure it out. It is so frustrating for him not to have answers for us, and he repeatedly asked us what we understood, if we had any ideas we wanted them to pursue, what our thoughts were, etc. It's not often we're asked what our thoughts regarding Samuel's care are. He pleaded with us to let him be a mediator with the cardiologists here if we have a course of care we want the docs to pursue. I think he was even teary-eyed numerous times in our conversation. I think compassion must be a really trying attribute to have when you're a doctor. It must be so painful to watch others hurt so much and then not be able to ease that pain.
His one idea is to call a doctor he knows at Stanford who "thinks outside the box." He said he doesn't want to give us false hope, but he wants to make sure no stone is unturned. He confessed that his greatest fear is that the doctors are missing something, but he doesn't think it's the case. He remarked how patient we've been and how well we've handled all of this. Another doctor in the circle, Dr. Kim, said that he hates that we're having to have these conversations, but that it's been such a pleasure to interact with us, and he doesn't know how we're doing it. It was a reminder to me that we can show God's goodness and faithfulness even to these doctors.
Anyway, the gist of all the doctors' input is this: we're at a deadend with Samuel's care. They don't have anything else to really try, and they say the course ahead is pretty clear: the doctors do not believe Samuel will survive. During one of the most terrifying conversations that a parent can ever have, Bryan and I were surprisingly peaceful. That can only be from God. I kept thinking, "Ok, it's in God's hands." And truthfully, it always has been. In essence we're in no different place than we've always been -- in God's care. It's up to God, and it always has been. So the doctors are at the end of their resources and knowledge; God is not. I don't know that God will heal Samuel, but I have no less confidence that He can. And if He does, what a way to get all the glory -- when medicine can't take credit for it. In fact, Bryan has thought for awhile now that if our Little Mystery is to get well, it will not be from medicine. We are still peaceful. We know the road ahead is likely one of hardship and pain, but we don't feel like it's written in stone. And we continue to call on God and ask for His healing and grace.
One other thing the doctor's mentioned is genetic testing for me and Bryan. They wonder if there is a connection between my two miscarriages and Samuel's condition, and they think it's important for us to explore that before we have more kids. In some ways, this was the hardest to take because it was unexpected and threatens my dream for more children. But, yet again, this is God's too. He doesn't make mistakes. And I trust Him in this as in all things.
So, God, here we are. Waiting. Samuel is Your child above all else, and our desire is that You do a miracle and heal his whole body -- his lungs, heart, kidneys, and liver. We would love for You to show Your power in this way and to draw the hearts of the doctors, nurses, RT's, and other parents to You. I'd love for You to draw the hearts of those who read these words to You. There is no other place to go with our burdens. And yet, we want what You want, and we surrender our desires to You. Samuel is Yours, and we open our hands and trust You. Carry us through these days, show us Your continuous grace. Use our story for Your greater story. We love You no matter what lies ahead. Grant us strength for each moment, and hold Samuel close to Your heart. Amen.
On a Personal Note
- We are exhausted, weary. There have even been times when we feel remarkably little. The way I describe it is “too tired to think, feel, talk, sing, or pray.” Kathryn’s words are, “Sometimes this still doesn’t feel real.” We have both commented that this life does not feel sustainable. At the same time, we know that God grants the grace and strength to sustain us. If we had known three weeks ago, when we were being transported from Northside to Egleston, what we were going to go through, we would have thought it unbearable. But God has given us exactly what we need for every day. A friend shared this link in one of his blog comments that expresses what we have been thinking, feeling, and experiencing in this season: http://www.brandonstaggs.com/spurgeon-morning-evening/02-14-AM.html
- This hospital is a pretty remarkable place, but it is filled with many sick people, and even more hurting people. A patient in our pod in the CICU just passed away. Heart breaking. We hurt so much for the family, and fear that path for ourselves. Meanwhile, other patients (like Samuel’s old neighbor, S) and their families are moving to the Cardiac Step-down Unit. Even while our hearts are heavy from our own circumstances, we regularly have opportunities to “Rejoice with those who rejoice” and “mourn with those who mourn” (Romans 12:15).
- If you have had a hard time getting Samuel out of your minds or if you been waking up in the middle of the night thinking about him, you can blame us. One of our constant prayers is that the Holy Spirit would move on our behalf and stir people to pray for Samuel and us…even throughout the night. This is not an apology. :)
- Both Kathryn and I are feeling a bit under the weather. This makes it a little scary, at least for me, to be around Samuel. We wear masks and wash and sanitize our hands incessantly.
- For the most part our souls, while heavy and tired, are peaceful. We attribute that to the grace of God in answering your prayers.
- Yesterday, I found myself picturing God's presence with us in a different way than I had through this process. I continue to see myself kneeling before my Heavenly Father asking Him to grant my request to heal my son. In the most dire moments of yesterday afternoon as we huddled over Samuel crying, praying, singing, and touching every bit of his skin that we could get our fingers on, I pictured Jesus, "a man of sorrows and acquainted with grief" (Isaiah 53:3), between Kathryn and I with His hands on our shoulders weeping with us. I found myself hopefully thinking of the bizarre account of Jesus raising Lazarus from the dead (John 11). Moments before he performed His miracle, he wept over the death of a friend. I don't understand why Jesus didn't spare himself the sorrow and just raise Lazarus from the dead right away. There is a lot that I don't and can't comprehend about my God, but I trust Him and am confident that He is good and great.
Sorry for the bulleted entry. Feeling too tired and slow-of-thought to write in prose. There is another entry (“A Medical Update”) below written at the same time and in the same style as this one. Thanks for praying. Keep it up.
- This hospital is a pretty remarkable place, but it is filled with many sick people, and even more hurting people. A patient in our pod in the CICU just passed away. Heart breaking. We hurt so much for the family, and fear that path for ourselves. Meanwhile, other patients (like Samuel’s old neighbor, S) and their families are moving to the Cardiac Step-down Unit. Even while our hearts are heavy from our own circumstances, we regularly have opportunities to “Rejoice with those who rejoice” and “mourn with those who mourn” (Romans 12:15).
- If you have had a hard time getting Samuel out of your minds or if you been waking up in the middle of the night thinking about him, you can blame us. One of our constant prayers is that the Holy Spirit would move on our behalf and stir people to pray for Samuel and us…even throughout the night. This is not an apology. :)
- Both Kathryn and I are feeling a bit under the weather. This makes it a little scary, at least for me, to be around Samuel. We wear masks and wash and sanitize our hands incessantly.
- For the most part our souls, while heavy and tired, are peaceful. We attribute that to the grace of God in answering your prayers.
- Yesterday, I found myself picturing God's presence with us in a different way than I had through this process. I continue to see myself kneeling before my Heavenly Father asking Him to grant my request to heal my son. In the most dire moments of yesterday afternoon as we huddled over Samuel crying, praying, singing, and touching every bit of his skin that we could get our fingers on, I pictured Jesus, "a man of sorrows and acquainted with grief" (Isaiah 53:3), between Kathryn and I with His hands on our shoulders weeping with us. I found myself hopefully thinking of the bizarre account of Jesus raising Lazarus from the dead (John 11). Moments before he performed His miracle, he wept over the death of a friend. I don't understand why Jesus didn't spare himself the sorrow and just raise Lazarus from the dead right away. There is a lot that I don't and can't comprehend about my God, but I trust Him and am confident that He is good and great.
Sorry for the bulleted entry. Feeling too tired and slow-of-thought to write in prose. There is another entry (“A Medical Update”) below written at the same time and in the same style as this one. Thanks for praying. Keep it up.
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