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.

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).

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.

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.

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.

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.

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.

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!

A Few Photos



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.

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.

A Medical Update

- Samuel is still critically ill, but the immediate crisis of last night has been averted. The oxygen to his brain was dropping for about an hour yesterday, and was dangerously low for about 90 minutes. Our nurse does not think that this would have had any long-term effects on Samuel. In many ways we feel like we are now in the same place as we have been for the last week or so: very sick, but stable.
- Unfortunately, most of his systems seem to be getting worse as opposed to better. The pulmonary hypertension may be the one exception.
- As Kathryn said, Samuel is back on the oscillator ventilator and is receiving 100% oxygen. While the oscillator has helped his oxygenation levels, it requires them to give Samuel the paralytic again. This is hard. We’d been really enjoying moments of open eyes and moving fingers and toes these last few days.
- The hepatologist (liver doc) looked at Samuel again this morning and still believes that the liver’s struggles are a result of the other problems that Samuel has – lungs, heart, kidneys.
- They did another echo of his heart this morning and the doctors had a new thought about the high pressure in his right ventricle. We may not have mentioned this specific problem previously, but this is not something that his heart can sustain for too long. Previously they thought that the RV pressure was a result of the pulmonary hypertension, but now that the pulmonary hypertension has improved (at least somewhat – though they cannot quantify how much), and they are still seeing the high pressure in the RV, they are thinking that there is another cause. His pulmonary valve (the valve that releases fluid from the RV through pulmonary artery to the lungs) has always looked a little abnormal to them, but they didn’t have any reason to pay much attention to it. Now they wonder if the valve needs to be repaired. If there is good news in this, it is that this procedure could be done in the cath lab, and that, if successful, it might help some of his other systems/organs. Also, they are able to monitor him during the procedure (unlike an MRI), and no incision would be required (as in surgery). On the other hand, while Samuel has already had two heart caths, one of them was really hard on him. Because he is so sick, any procedure is risky.
- His case will be presented in the Monday afternoon “Cath conference” (14+ cardiologists/doctors, and 3 surgeons), and they will consider this and other options. The MRI that was scheduled for tomorrow now seems unlikely. During an MRI, he could be on a special ventilator w/ no metal in it, but they cannot monitor any other vitals during the hour of the imaging. This seems risky to the doctors.
Just a quick update because I'm sure people are wondering...Samuel is much the same. Between the two of us, we spent much of the night with him. He is back on the oscillator because his blood gases were continuing to go south in the night. We haven't been able to be with him since shift change at 6:45 this morning, but we're hoping to get back soon. Samuel's little neighbor, K, just got back from his pace maker surgery, so we have to wait until he's settled. (Incidentally, K's parents got to hold him for the first time yesterday. I am genuinely happy for them.) Our favorite nurse, Richard, is back with us today, and he just called to say we can come back and sit with Samuel. I think Bryan will give a more detailed update fairly soon. Again, thank you for praying!

Sunday, August 23, 2009

Waiting

Samuel continues to hold on. Some of his stats are more steady, but he hasn't increased his urine output at all (despite a heavy dose of lasix), and he is still acidotic. This could be a long time of waiting.

My mom is here with us now and has been for the last several hours. We've sung many songs, prayed, prayed more, talked to Samuel, prayed again, and read. We finished reading him Prince Caspian this morning, and then we started Voyage of the Dawn Treader.

Bryan and I will spend the night in a sleep pod tonight (a small room with 2 cots on the same floor as Samuel). We continue to wait. And we still ask God for a miracle. It is evident to me that God has been strongly with us the past several hours when the reality of Samuel's condition became clear.

I don't know how we will face the days most likely ahead, but I do know we won't walk them alone. Our God is with us now, and He will be with us whatever is ahead. We covet your prayers. Thank you.

Please Pray

We are in the valley of the shadow of death right now. We've been told that "Samuel is critically ill. Anything could happen at any time." We've spent the last hour singing to Samuel and praying for him. Please pray with us and for us. We feel the Lord's presence with us in this place.

Saturday, August 22, 2009

What a Way to Start Life!

Samuel Erik is 3 weeks old today. What a way to start life!

Not many changes today. His ventilator settings were adjusted. Some adjustments felt like progress – the concentration of oxygen that he was given was dropped from 75% to 55% (room air is 21% oxygen). But these were compensated for by others that did more work for him (i.e. holding his breaths for longer). He seemed to tolerate these changes well and there was a little sign of his lungs doing a little bit of work (a good thing). His x-rays looked the same again. Doctors have been going after the fluid in his lungs (suctioning, saline treatments, respiratory therapy, antibiotics, bronchioscope, etc.) pretty aggressively for a while now. What I hadn’t put together until today was that the fluid is not just in the chamber of his lungs, but in the lung tissue itself. The left lung seems totally collapsed under the weight. The fluid build-up, especially in the lung tissue, is part of a larger problem (more on that in a minute), but doctors are trying everything at their disposal to help his lungs. Somehow in the midst of this, his oxygen saturation is still adequate.

The issue getting a lot of the doctors’ attention these days is Samuel’s fluid build-up. He is so swollen – eyes, face, hands, legs, feet, belly, lung tissue, etc. It looks painful. It seems that the primary culprit is his kidney function. In addition, to the treatments that I described yesterday, they have given him lasix (a diuretic) to help his body expel fluids. The catch is that these meds take a toll on the kidneys, which are already struggling, so they are giving him a really low dose. But the dose is so low that it has done little good.

Dr. Kuo gave us a little clearer picture of the cause and effect cycles that seem to be plaguing Samuel’s body. His heart is shunting oxygenated blood to the right (deoxygenated) side and now some deoxygenated blood to the left side/aorta (which sends oxygenated blood to the body, limbs, and organs) as well. On the right side this means that his lungs are getting “flooded” and taking on fluid. However, as mentioned before, the lungs are unable to process this fluid because of problems on the left side. From the aorta (left side) some of the blood getting to the limbs and organs is deoxygenated (though less than before… if indeed the pulmonary hypertension is improved). This means that these organs are not getting the oxygen that they need to function optimally. So, the kidney, intestinal tract, and liver are all struggling. Because the kidneys (the body’s fluid filtration system) are struggling, fluid is backing up. We already know what this is doing to his lungs (saturation and collapse) and body (swelling). Because his intestinal tract is struggling, he cannot take breast milk, and doctors are guarding against intestinal perforation. Because his liver is struggling, his billirubin levels continue to go. Round and round it goes. The best that I can figure, we need Samuel’s pulmonary hypertension to continue to get better and for Samuel to get healthy enough for the surgeon to be able to tie of the PDA (duct between the pulmonary artery and aorta) – or better yet for the PDA to close on its own. That or a miracle. And so we pray.

Beth, a P.A., told us today that Samuel is still a “puzzle.” She wants a name for what’s going on, but so far they can’t really figure out why he is so sick. In a week or so we’ll get back results from a chromosomal test that looks for something like 40,000 different things. Apparently Beth hopes that that might help clarify Samuel’s case some.

A simple, but profound thought occurred to me today: This is not hard for God. This is not a mystery to Him. He is not puzzled. In fact, He knows exactly what is going on. His plans will come to pass, and no purpose of His can be thwarted.

Over the last several weeks, a number of folks have commented, with apparent admiration, about our strength or the strength of our faith. The thought occurred to us, however, that faith itself is unimpressive. Everyone has faith; everyone believes something. We all see the world, respond to circumstances, and make decisions based on these beliefs. If there is anything remarkable about our faith, it is not that we believe. It is Him in whom we believe. We place our trust in Jesus Christ the Son of God, the Lord and Savior of our lives. When we have strength or peace or hope or rest or comfort, it is not because we believe really strongly. It is neither blissful delusion nor will power. We experience them because in His grace, God gives strength, peace, hope, rest, and comfort to those who come to Him. Now these days it seems that I have to fight every morning to rest in this faith... and admittedly, I am not always as successful as I would like to be. To quote an old hymn, “Oh for grace to trust Him more.”

Friday, August 21, 2009

More Complications

Our little Samuel continues to swell and hold water. As a result they have tried a couple of things to get him to process and pee those fluids. One of those things is a urinary catheter. Another thing that they are doing is putting him back on Dopamine which is a medicine for blood pressure. At a really low dose it actually relaxes the veins around the kidneys… which we found out today, are the newest organ to be concerned about. The doctors are pretty concerned about his renal function. This felt like a pretty big blow to Kathryn and I. Another struggling organ!?! Please, pray that his kidneys are able to start functioning properly and help him pass his fluids. If they do not, they may have to put him on dialysis.

His lung x rays were only very slightly improved from yesterday. Obviously, we were hoping for better. Also, they found an infection in the culture from the bronchoscope yesterday. Thankfully, he was already on some antibiotics because of a previous test. It is likely that this infection is contributing to the fluid in his lungs, so hopefully they will lick that pretty soon. All of that said, his stats and blood gas numbers have been at least acceptable for most of the day.

Samuel has gone through a few IV lines in his short life. They don’t last long, especially in his tiny veins. Additionally, his hands and feet are so swollen from retaining fluid that all of their pricks to find another one have been fruitless. He is now on so many meds that some of them are incompatible and cannot be fed through the same line. For the last day or two they have occasionally had to stop the meds going through the line to administer others. As a result of that, they have just put a femoral vein (central) line in. A moment ago the nurse was flustered because after an hour of trying to get that line up and running, they wondered if the line is actually the artery and not the vein. Dr. Das used a clever trick (using an echocardiogram and saline solution w/ bubbles) to figure out that it is, in fact, in the wrong place. So the poor kid is going to have to get pricked and poked AGAIN!

Pat, Kathryn’s mom, came down to the hospital for 3 hours today while K and I got a couple additional hours with the boys. However, because of several consecutive sterile procedures in the CICU, she never got in to see Samuel. This was very disappointing and frustrating.

Samuel opened his eyes this afternoon. It was the first time we’d seen his eyes in a week and a half (since they first put in the paralytic). What a gift! It made me realize what a hard road this has been for us when I found myself craving simple eye contact with him. Interestingly, it also stirred up some heartache for both Kathryn and I. We found ourselves wondering if he is afraid, if he is in pain, if he is anxious. As you can imagine, these wonderings brought tears to our eyes. I am so grateful that I have my wife/best friend to go through this with! It would be unbearable otherwise.

Please keep praying. The list of medical requests seems to grow:
- THAT GOD WOULD HEAL SAMUEL!!!
- that his kidneys would function well and that we’d be able to avoid dialysis
- that the infection in his lungs heals
- that the fluid in his lungs goes and stays away
- that his pulmonary hypertension would continue to heal
- that his liver would be able process the billirubin (I forgot to mention that these counts have been going up again for several days in a row now.)
- that his heart would heal or at least be able to function with his several defects

In addition to medical requests, we have continued to meet other parents with kids on the CICU. We are beginning to pray that God would heal the whole floor. Wouldn’t that be a miracle?! May it come to be!

Thursday, August 20, 2009

Fragility, Fear, and Faith

All in all, it was a pretty decent day in the CICU for us. Samuel had his bronchoscopy this morning shortly after we got to the hospital. Kicked out for the procedure, we decide to spend the 40 minutes (that’s how long they predicted it would take) in the lovely garden. About an hour and 20 minutes later, we were starting to feel nervous (though by now we really should know that everything takes twice as long as they tell us). When my phone finally rang, the woman on the other end merely asked us where we were and then told us Dr. Schechter would come meet us. We spent several nervous minutes waiting for him. I think hospitals really should start every phone call with, “Everything is just fine” to prevent the parent worry factor. Anyway, the pulmonologist told us that he was more aggressive this time and was able to get some mucus plugs out of Samuel’s lungs. Samuel tolerated the procedure “ok,” but the doctor referred to him as “fragile.” Though they had to stop and restart several times because his stats would drop, in the end he did all right. The x-ray after the procedure showed that his right lung looks a little better, but his left lung is still entirely whited out. (A clear lung shows up as black space on an x-ray.) They are going to be using a more concentrated saline solution to try and loosen up the gook that remains in Samuel’s lungs. After the bronchoscopy, they switched Samuel to a different mode on the same ventilator in hopes of opening (and keeping open) his lungs. Initially after the procedure, he was on 95% oxygen, and his stats were a bit low; by the end of the day, he was on 85% oxygen, and he had a great blood gas numbers. Yea for good blood gases!

A couple of tests show that Samuel might be fighting an infection, so they put him on antibiotics to deal with it up front. He started the day looking not as puffy as the last several days, but he hardly peed at all today, and by the time we headed for home, he was very puffy in the face again. He has a hard time expelling all the fluids in his system.

We spoke with Dr. Clay, one of the cardiologists on the CICU, and he said that we will try for the MRI early next week. They want to wait a few days b/c the radiology department is on another floor, and they don’t want Samuel to be away from the CICU when he’s so fragile.

We realized today just how susceptible we are to fear in these uncertain times. Besides the moments in the garden while we waited for the pulmonologist, we had a couple other “scares” today. Bryan snuck away to get his haircut while we were forced off the floor for another kid’s procedure, and I tried to call him with an update. My call got disconnected, so I called right back. Since I called twice in a row (our signal for when we need to get in touch with one another), Bryan feared that I was calling with bad news. Later on, Bryan was coming back into the CICU after leaving for a few minutes, and he saw me crying a little. I told him that someone was coming from the OR – meaning a new patient – and he immediately wondered if I meant that someone was coming to take Samuel for emergency surgery. It’s amazing how sensitive we are to the fearful possibilities. Though we trust God and have His peace, we still find fear creeps in and threatens our calm.

You can continually pray for Samuel’s lungs – that they would open up and stay open, that his lung x-ray would look great in the morning, that he will be weaned off the ventilator, that he doesn’t have an infection, that they would be able to do an MRI next week, that his liver and kidneys are ok (his numbers haven’t been great), that he will pee off the excessive liquids, that his heart would not be too taxed, that he can get back on breast milk, that the pulmonary hypertension would continue to improve, that the doctors would be wise about Samuel’s care, and that his nurses and RT’s would be gentle, attentive, and cautious. And you can pray that Bryan and I honor the Lord in this season and that we trust Him no matter what we face.

Also, you can pray for the children on either side of Samuel. On one side is an upper-elementary aged boy, S, who has been on the heart-lung bypass machine (ECMO) for the last several days. He got off of it today but is still sedated. On the other side is a baby, K, who had surgery in his first few days of life. The doctors are now saying he probably needs a pacemaker as well and will need to be reopened every 5 years to replace the battery. You can pray his heart starts to beat as it should, and he won’t need the pacemaker.

Again, thank you to all of you for your kindness, love, and PRAYERS. This whole experience has challenged me to be more compassionate as I have witnessed your compassion for us. It’s been such a blessing to me, and I want to be able to have that kind of compassion for others in the same way you all have shown it to us. Words cannot begin to adequately express our gratitude. May the Lord bless and keep you all.
---

Wednesday, August 19, 2009

A Couple Requests and an Answer

We had to step out of the CICU for about an hour today for a new patient to come in from the O.R. When we got back, we found out about a new issue. All of a sudden brown liquid was coming out of the suction tube that goes through Samuel’s left nostril and into his stomach. This was indicative of bleeding in his stomach. They immediately stopped the breast milk that he was getting (which was actually fed past his stomach directly into his small intestines) and ordered an x-ray of his stomach. The x-ray results did not show anything concerning, but the brown fluid continued to drain out for the rest of the day. Though we never heard from the doctors on it, our nurse was fairly concerned about this. One more thing to be concerned about. One more thing to pray for.

The bronchoscopy did not happen today, but Samuel is on the top of the list for tomorrow morning – 8am or 10am. Again, please pray that he tolerates the procedure well and that they are able to open up his lungs. That would be awesome!!

The biggest news of the afternoon was that Dr. Kim (one of the CICU cardiologists) heard back from his colleagues at Children’s Boston and spent some time on the phone discussing Samuel with them. They, too, find him to be a very unusual case. They seem to agree with the diagnosis and treatment decided by the doctors here at Egleston. This, too, is an answer to prayer. They concur that Samuel has lung issues beyond those caused by his heart defects. They, also, concluded that the anomaly on the angiogram (i.e. heart catheterization images) is most likely a hemangioma, and that ligating (i.e. tying off) the PDA would most likely help reduce the mucus in his lungs and keep them open. The doctors at Children’s Boston did suggest an MRI to get a better look at a) the hemangioma, and b) the PDA and potential coarctation of the aorta. Our doctors had considered this for the hemangioma (before the PDA ligation was part of the plan), but at the time they didn’t think that they would do anything with the results. The doctors in Boston also mentioned that some doctors are using beta blockers to treat hemangioma that do not go away on their own, but they don’t know if it would work for a heart hemangioma.

In summary, here are the ideal next steps from the perspective of the doctors:
- Bronchoscopy to clear up and open his lungs
- MRI to give better pictures of the hemangioma, PDA, and possible coarctation
- Surgery to tie off the PDA
- ???

Please keep praying that God would heal our Samuel. We so desperately want to bring him home.

A Plan of Action?

Maybe. But a bit of a scary one. It seems that Samuel’s pulmonary hypertension (i.e. pressure of the vessels around the lungs) has improved. This is an answer to prayer. One evidence of the improvement is that yesterday they weaned him off of one of the meds (nitric oxide), and today they have backed off of a second (Bosentan or Tracleer), and he seems to have tolerated them well. Another way that they know that his pulmonary hypertension has improved is from the echocardiograms. On the echo images they can see that the PDA (patent ductus arteriosis; duct or vessel that connects the aorta on the left which sends oxygenated blood to the body to the pulmonary artery on the right which sends deoxygenated blood to the lungs) is still large, but because of the decreased pressure in the lung vessels/arteries some of the blood flow across it has changed direction. Also, because the coronary fistulae are shunting blood in the same direction, even more of his blood is going from left to right, “flooding” his lungs. So while the decreased pulmonary hypertension is good, on one hand, it has created another problem by causing too much flow to the lungs. The doctors believe that in addition to the ventilator which does not allow him to cough, sneeze, or spit out the mucus in his breathing passage, this “flooding” also contributes to the additional fluid in his lungs (not exactly sure how, though). The fluid in his lungs has led to the atelectasis or the collapse/deflation of parts of his lungs which we’ve been telling you about for the last few days. Interestingly, the cardiologist takes all of this as a complication (i.e. his primary concern right now is for Samuel’s lungs) while the surgeon calls this all an improvement.

As a result of all of this the doctors are suspecting that the PDA will need to be ligated. This surgical procedure would entail tying off the duct by going through his ribs (i.e. not an open heart surgery). The scary part, however, is that his lungs are in such bad shape and would need to improve significantly before surgery. This morning’s x-ray showed his lungs to be in worse shape than they were the day before: the right looked as bad or a little bit worse, and the left one looked entirely collapsed. Surprisingly his blood gas numbers and his oxygen saturation look decent for lung x-rays that look as bad as his do.

The next step to improve his lungs is another bronchoscopy, probably this afternoon. They will try to flush and suction as much fluid as they can. One particular challenge is that the upper right lobe of his lung is nearly impossible to get into with a bronchioscope, and it needs help. In addition, they may need to put him back on the oscillator (the other ventilator). If those work, it sounds like surgery is likely.

The heart of our prayer for Samuel’s health has always been and will continue to be that we will have a healthy and happy baby boy to bring home soon, and that he would live a long and healthy life. More specifically though, you can be praying that:
- his lungs open up and that he is able to breathe on his own
- Samuel tolerates the bronchoscopy and that it is a productive procedure
- the PDA closes on its own and significantly reduces the fluid build up in his lungs
- short of that, his lungs improve enough to sustain him through surgery
- the doctors would have wisdom and insight in evaluating their plan
- that we would hear from Boston Children’s Hospital, and they would have a consensus with the doctors here about the best plan of action

Thank you all, so much!!! I have had a few times in my life when I have tangibly felt that I was being upheld by the prayers of others. These 2+ weeks have absolutely been one of those seasons. It is a humbling and faith-building thing.

Tuesday, August 18, 2009

Tinkering on Tuesday

Well, it’s been a tiring day for sure. A day of tinkering doctors and respiratory therapists (RT’s). A day of hovering. A day of trying to wean Samuel from the ventilator. A day of frustration in many regards. I won’t say that the docs, nurses, and RT’s made much progress with our little guy. In fact, we ended the day on a higher vent setting than we started with. Ugh. Samuel was a trooper through it all, and his heart endured a lot. They suctioned and suctioned Samuel’s lungs and took a record number of blood gases. (Poor kid has now had 4 blood transfusions in his first 17 days of life.) His blood gases were pretty poor all afternoon. They took him off the nitric oxide, and they took two X-rays.

Samuel’s lungs look quite bad. They sound terrible too. One doctor said they were “dismal.” I could even hear the junk in them without a stethoscope. His lungs are full of fluid and gook. Yesterday his left lung was collapsed, and his right lung looked ok. Today, after yesterday’s bronchoscopy, his left lung looks better – some air in it – and the top of his right one is now collapsed. So all the tinkering was in an effort to open up his lungs and get him breathing better. Alas, I don’t think it did much or any good.

They took Samuel off the paralytic this morning, which I was really excited about. However, you would never know he was off it. After 10 hours without it in his system, he was just as asleep and still as when he was on it. I kept hoping he’d open his eyes and let us see him, but he was utterly uncooperative. Maybe tomorrow we’ll get to see those eyes of his.

Samuel is now very swollen and puffy. The nurses and doctors assure me this is normal and is part of having heart problems and being on the ventilator, but I hate to see it. Honestly, I wouldn’t believe he was the same child I gave birth to if I hadn’t seen him everyday and seen the gradual progression of it. He looks totally different. I kind of wonder if he could open those puffy eyes if he wanted to. From days of lying on the bed, he has a pretty funny shaped head too, and Bryan and I sort of jokingly wonder if his nostrils will be permanently flared from the tubes down them. What a rough start to life our little guy has endured!

Despite all of these things, we feel like he’s been pretty stable for the last 4 or 5 days, and that’s been encouraging to us. We are hopeful that his lungs will start to cooperate. The docs are hoping once he wakes up more and starts to add his own breaths to the ventilator, he will be able to open his lungs more and get some of the junk out of them. We are praying this is so.

We’re becoming the “regulars” at the hospital. One nurse said to us today, “I don’t remember giving you guys a season pass.” And the RT’s now say, “See you tomorrow, guys!” as though we’re old friends. The ladies at the CICU front desk know us well, and I think even the check out ladies at the cafeteria know our names! Our ped. cardiologist called today to check on us and told Bryan, “I have been afraid to talk to you. You’re such a nice couple, and no one ever has any good news for you.” All that to say we are known and noticed here in the hospital, and we have a chance to show the staff and doctors God’s love and grace. Somedays that seems really hard to do as we get so focused on our story and our son, and we get worn out. But we want to love these people too, and we want to be a light wherever we are. You can pray that we shine Christ’s light brightly and faithfully in this unique opportunity to be His hands and feet.

You can also pray that Samuel’s lungs get cleared of all the mucus in them, that he wakes up more and cooperates with the ventilator, that he can get off the ventilator soon, that his blood vessels to his lungs relax and let blood flow through them, that his nurses and RT’s are conscientious, gentle, and attentive, that the doctors know how to proceed, that his heart can function as it ought, and that the LORD DOES A MIRACLE AND HEALS OUR SON!

It has been a really long day for us – the hour and 40 minute drive home in bumper-to-bumper traffic didn’t help. But we came home to a meal from friends, a thoroughly cleaned house thanks to some generous friends and coworkers, gas gift cards in our mailbox, and some yummy cookies. Thank you, friends, for serving us, loving us, and praying for us. We are blessed again and again by you. And now, to bed we go!

Mommy and Daddy with Samuel

On His Tummy

Monday, August 17, 2009

Monday Mayhem

It is strange to have been in the CICU for so long that we notice patterns in our weeks. It is official, Mondays are mayhem: more new patient admissions and doctors coming off of their weekends ready to tweak and test. While we arrived at the hospital at 10:15 this morning, we didn’t get to see Samuel until noon. There was a new patient next to Samuel who is on the bypass machine that is doing the work for his heart and lungs while he awaits or recovers from surgery. Later in the day we had to leave the CICU for another hour because Samuel was finally getting his bronchoscopy. These interruptions usually arrive with very little forewarning.

Early this morning Samuel’s blood gas numbers were poor so they had to make some adjustments. Usually these adjustments include things like suctioning his lungs (through the ventilator tool) or mouth, changing the settings on the ventilator, adjusting his meds, or giving him new ones. One new adjustment that they made this morning was to turn him on his tummy. The hope was that changing the pressure from the back to the front would help his lungs. Doing so revealed a bed sore on the back of his head from being stationary on the oscillator for several days. They have also halved the dose of nitric oxide (an inhalant drug to treat the symptoms of his pulmonary hypertension) that he is breathing in and halved the amount of breast milk that he is getting – he had “coffee grounds” in his NG tube, signifying some trouble digesting the milk. Knowing that he has had a tough night makes for more anxious mornings – wondering how he’s doing and wanting (but being nervous) to see him. When I look over the last 3-4 days, his lungs and ventilation really have been fairly steady. We may have even made a bit of progress. At the same time, there seem to be a couple of times each day when his condition dips and recovers. These keep us on our toes…and knees.

One respiratory therapist told me today that “the human body is so much smarter than we are. Every treatment or drug that we have eventually creates another problem. But the body adjusts to them to compensate. This is why some of the things we do only work for a day or two before we have to try to fool the body again.” Maybe this is the reason for the dips. Reflecting on the fact that Samuel’s due date (8/25) is not for another week, Kathryn’s mom has commented about how many drugs, how much technology and knowledge, and how much medical apparatus it requires to simulate the womb. God’s creation really is an amazing thing.

This surfaced several days ago, but we haven’t yet explained the latest theory that the cardiologists have about another heart abnormality in our little mystery. When the doctors took a second look at the cath lab images, they saw something that they hadn’t noticed before. They believe that Samuel has a hemangioma (a small, benign tumor of the cells that line the blood vessels; google it – you’ve seen them before). Hemangioma is not so rare, but none of the doctors have ever heard of a hemangioma on the heart before. It is actually possible that this anomaly is reducing the blood flow from the fistulae back into the right side of his heart (which would be a good thing). In the next day or two, the team of cardiologists up at Children’s Hospital Boston should be looking at data, echocardiograms, and cath lab images of our son. Please pray that they may have some further insight in diagnosing and treating him.

As already mentioned, Samuel had his bronchoscopy today. They send a scope with a camera and light through the endotracheal tube (i.e. his ventilator breathing tube) into his lung. The right lung (the one having the harder time till now) looked okay, but the left lung appeared at least partially collapsed in the morning’s xray. Prior to the procedure, the cardiologist involved was concerned about bleeding and/or a blood plugs because of some hemorrhaging he had in his lungs early on. Until he mentioned this, Kathryn and I didn’t even know that his lungs had been bleeding. The pulmonologist, on the other hand, was concerned that the mucus secretions would either be so deep in his lungs or so thick that he wouldn’t be able to get them out. Thankfully, neither doctor’s concern was realized. There was a “moderate” amount of mucus and fluid with a little bit of a pink tint, but they were able to suction a good deal of it out. The pulmonologist said that he feels like Samuel’s situation was the type of case in which he is able to do some good. They sent some of the suctioned stuff to the lab to be sure he doesn’t have an infection of any sort.

We also got to ask the pulmonologist about his perception of Samuel’s lung troubles. We had several months before Samuel was born to get our arms around the anatomy and function of the heart. I’ve had a harder time getting my arms around the anatomy and physiology of the lungs in the last week. It sounds like Samuel has two primary lung problems: 1) mucus secretions gathering in his lungs, and 2) primary pulmonary hypertension (i.e. excess pressure in the arteries and vessels around the lungs). The former is actually the result of him being on the ventilator; his body cannot sneeze, cough, or spit out the things that it would if he were breathing on his own. The heart defects may be contributing via excess blood flow to the lungs, but the pulmonologist said that even a completely healthy person who was put on the ventilator for a week would need the exact same procedure done. As a result Samuel will likely need another bronchoscopy at some point. Please continue to pray that God heals Samuel’s lungs.

We continue to receive encouragement and support – a stack of notes today from our church elders and Buckhead church staff members, friends mowing our lawn, meals and snacks, many prayers, etc. It is very comforting to know that we are not alone in this. We are the beneficiaries of the church living, loving, and serving as it is called to do. It is humbling, and we are grateful. No matter how our God writes the coming chapters, we will (and do) have a story to tell of His goodness and faithfulness. Thanks for being a part of it.

Bronchoscopy

Samuel is currently undergoing a bronchoscopy. The pulmonologist is sending a little tube with a camera on the end of it down into Samuel's lungs. They will look and see what's there and try to suction out any secretions. His lung x-ray this morning was quite poor -- the whole left lung looks plugged or collapsed, so they are hoping to try and get the junk out of his lungs to help him improve. They said it could take anywhere from 15 minutes to a couple of hours depending on what they find. Please pray that Samuel tolerates this test well -- that his heartrate stays steady, his oxygen to his brain is good, his ventilation is steady, etc. And pray that this procedure somehow helps him to get better. It would be great if they could really get the stuff out of Samuel's lungs that isn't supposed to be there. Thanks!

Sunday, August 16, 2009

Nuggets of Encouragement

Our little Samuel turned two weeks old last night. It's hard to believe we've only been living this chaos for 15 days. It's even harder to believe that we were also at the lake with several good friends a mere 15 days ago. That seems like another lifetime. In retrospect, this was a very risky move on our part -- heading two hours north...a few weeks before my due date...when I was at risk for preterm labor. Those of you who know Bryan and I know we are not risk-takers at all. We like to play it safe and follow the rules, but for some crazy reason we dared the trip. And considering my labor with Samuel was 3 hours from start to finish, it was a wild decision to make! Thankfully the Lord allowed us to get home and take naps before my labor started. It could have been a terribly close call.

It was a pretty good day at the CICU today. This morning the doctors and nurses switched Samuel off of the oscillator and back to a regular ventilator because there was a build up of fluid in his lungs. It's harder to suction out the fluid on an oscillator, so the excess fluid warranted a change. They started Samuel on 90% oxygen, which is a very high percentage given we all breathe 21% oxygen. However, over the course of the day, they weaned him down to 60%, and he had some of the best blood gases he's had since being admitted. (They take blood gas tests at least once every 4 hours.) His heart rate was elevated all day, and he had some irregular beats, but on the whole he seemed to tolerate the change well. And hopefully this means he can come off of the paralytic tomorrow. It will make a world of difference in my mind to see him be able to move on his own, open his eyes, swallow, etc. It will feel more like my baby is alive than like he's just being sustained by machinery.

The docs also approved doubling Samuel's breastmilk intake. So now he gets 4cc's an hour. It's still not much, but it's something! I think the plan will be to continue increasing his milk intake until he's getting most or all of his nutrition from it. And they took Samuel off one of the heart medications today. He may have to go back on because his heartrate was elevated quite a bit all day, but whenever we see the meds tick down, we feel encouraged. Oh, and Samuel is on viagra! I guess it helps to relax the blood vessels in his lungs so that blood can flow through them more easily. All in all, Samuel had a lot of changes today. You can pray that he handles them all well and is able to continue making forward progress -- wean more off the ventilator (60% is still a lot of support), get more breastmilk, and need less meds to sustain his heart and lungs.

I left the hospital today feeling hopeful and encouraged. Bryan felt a bit encouraged, but he said he feels like he's experiencing "emotional whiplash." A good day is often followed by a bad one. And Mondays seem to be big days for tests, changes, doctor info, etc. So Bryan finds himself bracing for a potentially hard day tomorrow.

This morning we took the family to church and then all headed to the hospital together. The time we get with Caleb and Joel is so important, and they seem to be feeling our absence and heavy-heartedness more and more. Joel was very upset about going to Waumba Land this morning (North Point's preschool program), and he never feels that way. Caleb has been crying a lot and needing me more and more. Last night he came in our room in the middle of the night for the first time ever and asked to climb in bed with us. As I was putting him to bed tonight, I mentioned that he should stay in his bed, and he burst into tears. This whole experience is taking a lot out of him, and Bryan and I can't be everything all three of our boys need us to be right now. The Lord will have to fill in our gaps.

Some of the elders and former elders at North Point prayed over Bryan and I today after our church service. It was again good to hear what others are asking of God on behalf of Samuel. One elder said, "We're going to ask big!" And right now Bryan is downstairs with his men's group praying and beseeching God to heal our son. We're asking big too.

God, thank you for a day of mostly good news. Thank you for praying friends and church members. Thank you that Richard was our nurse again today and for how he serves us and takes such good care of us -- having the chair I always like to sit in waiting and ready, bringing over the table we put our computers on before we even started to look for it, bringing us water, and being gentle with us and Samuel. Thank you for coming home to a house with plenty of food prepared by our friends. Thank you for your tender care of us in this season of such uncertainty and fear. Thank you for all the things I don't even know to thank you for. Thank you.

Saturday, August 15, 2009

Gratefulness in the Midst of Grief

It's been another fairly uneventful day, and we are thankful for that. Samuel has been pretty stable for the last day or so. He had some irreguar heartbeats this morning, but they have stopped. They weaned him just a tiny bit on the oscillator, and he continues to get a small amount of breastmilk on a constant drip. When we called at 3 am last night, he had just had a poor blood gas result, and Bryan and I spent an anxious 15 minutes waiting for the nurse to call us back with another test. Thankfully the next test was much better.

This morning Mom came to the hospital and spent a few hours at Samuel's side while Bryan and I spent some time with Caleb and Joel. We had "Pancake Saturday Morning" like usual, and Bryan was grateful the boys requested easy shapes -- a "Z" for Caleb and a "pop-pop" (lollipop) for Joel. We played with the boys and tried to get some quality time with them. After lunch, our friend Libby picked them up to go to a birthday party. Caleb didn't want to go -- he wanted to stay with us. But both boys had a grand time at the party, and Bryan and I headed to Egleston for the rest of the day.

One of our favorite nurses was on today and caring for Samuel. I was asking him about Samuel's pulmonary hypertension, and he told me that on rounds this morning, the doctors were taking about the likelihood of a child having both a heart defect and primary pulmonary hypertension. Apparently 1 in 50,000 live births has a heart defect, and 1 in 50,000 live births has primary pulmonary hypertension. According to nurse Richard, that means 1 in 2.5 million babies (though Bryan thinks it is 1 in 2.5 billion) are born with a heart defect AND primary pulmonary hypertension. That doesn't even take into account the coronary fistulae which the doctors have never seen in an infant or his hemangioma (we haven't mentioned this most recent theory yet) which they have never seen on a heart. Yet again we see the uniqueness of Samuel! Everyone here comments on how Samuel likes to do things differently -- different treatments, different results, different diagnoses, etc. He's one of a kind, for sure.

Bryan's two bosses and special mentors, Bill Willits and John Woodall, came to the hospital today to pray over Samuel. It was comforting to have someone stand over Samuel's bedside with us and see a glimpse of our days and our precious boy. It was great to have them pray with hands on our little one. It lifted our burden a little today and made Bryan and I both think of Galations 6:2, "Carry each other's burdens and in this way you will fulfill the law of Christ." We saw that in action today.

Today also marks the 17th anniversary of Bryan's mom's death. His memories of that day are more tangible as we sit by the bedside of our sick son. As we reflect on death and life, we find our faith being stretched and our hearts heavy. I was telling Bryan this morning that God is asking a new kind of faith of me. In my story, my heartbreak and woundedness has all been from people's choices, and though I can't understand what motivated them to make those choices, I can understand sin and how God's gift of free will can result in pain and suffering. This time, however, there has been no sin, no betrayal, no human choice involved. God simply made Samuel this way, and though God could have made him differently and could even now heal him, so far God has chosen to give Samuel this sick heart and these sick lungs. It's requiring me to trust God in a new way -- to trust that He is good even now and even in these circumstances, even in this design of Samuel. God is growing and stretching my faith for sure.

One other nice thing about today was something I think I can thank nurse Richard for. I broke down crying to Richard earlier in the day while Bryan was walking John and Bill out, and I had a splitting headache this afternoon. Richard noticed my less than stellar status, and this evening a woman came over to our area and asked to borrow me for 20 minutes. She said she needed to give me a neck and shoulder massage! It was the most restful 20 minutes of the last week for sure. Apparently it's her fulltime job to give massages to parents in the hospital. What a wonderful thing it was to be cared for in that way and so unexpectedly.

We're about to head home for the night. It's easier to leave our sweetie when things are steady and he's looking well. We're crazy about this child. In the midst of all this trial and heartbreak, I am repeatedly struck by how much I have to be thankful for. I spend my days beside a son I love, I walk this road with a husband who loves me and our family and who points us heavenward every day, I have my mom at home taking better care of Caleb and Joel than I could at this time, and I know my God as we travel down a road I wouldn't wish on anyone in the world. I often look around me at the hospital and hurt for the other parents with sick kids. How many of them don't know the peace that passes understanding? How many are walking without the love of a spouse? How many are lacking the firm foundation of Christ under their feet? Though I would never have chosen this road, I find much to thank God for as we journey down it. I pray I continue to remember His goodness regardless of what is ahead.

Friday, August 14, 2009

Anchored On A Calm Day

It has been a while since we could say this, but Samuel has had a relatively calm day. Thank you, Lord. It seems that the current plan is to let the oscillator and the nitric oxide do their work on his lungs. The hard part is that he has now been on the oscillator for two full days and they have only barely weaned him. It feels like his lungs have been taking one step forward and two steps back since we’ve been here. Please pray that his current treatment would alleviate the pulmonary hypertension and allow him to eventually breathe on his own.

Today marks a milestone in Samuel’s life: the first day that he has some of mommy’s milk in his tummy. He is now getting a constant drip of thawed breast milk through a feeding tube in his right nostril. Though not a medical hurdle, it was nice to have something to celebrate. As long as the additional blood now needed in his gut to digest the food does not diminish the blood flow to his heart and lungs, this can only be a good thing.

Another cool thing today was that Kathryn’s mom, Pat, got to spend a good part of the day with Samuel. Kathryn’s uncle and cousins took Caleb and Joel today, and from the sound of it, they had a blast (no surprise). Since we can only have two of us at his bed at a time Kathryn, Grandma, and I took turns swapping out.

Even on these calmer days the CICU can be a stressful place. There was a “Code Blue” announced over the hospital intercom a few minutes ago. There have probably been 8-10 since we’ve been here. It was wild to see half a dozen doctors, nurses, and respiratory therapists dart towards the door waiting to hear the location announced. Kathryn and I immediately found ourselves praying for the patient, their family, and the doctors.

I’ve also found that, too often, my emotions are hitched to the numbers on the monitors around Samuel, which go up and down regularly. When they go in a favorable direction, I feel lighter and more hopeful. On the other hand, when they are trending in the other direction, I move toward anxiety. I constantly need to remind myself that my hope is not in monitors. It is not in doctors or modern medicine. And though we pray desperately for Samuel's healing, ultimately our hope is not even anchored there. My hope is in Jesus Christ in whom we have received life that is not limited to this world and these bodies. Because of the grace of God, just as Jesus was raised from the dead, those who place their trust in Him will be given a new body in a new heaven and a new earth. One description of this in the book of Revelation is particularly hopeful: “’and He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain; the first things have passed away.’ And He who sits on the throne said, ‘Behold, I am making all things new.’” I look forward to that.

I’m aware that, to those of you who do not believe in God or who would not consider yourselves followers of Jesus, this may sound crazy or weird, but if that is true – and I believe that it is – it is the best news in the world. Now, I wish that my emotions were more attached to this truth than they are most of the time, but these are the convictions around which we orient our lives and they anchor our hope.