Thursday, August 13, 2009

Life Is In God's Hands

So far today, it has been a better day in the CICU. We're on an upswing of the rollercoaster, it seems. This week it's been a pendulum -- one bad day, one good day, another bad day, and so forth. We spoke with multiple doctors this morning, including the surgeon, and they all say the same thing: they speculate that Samuel would be able to function with his heart and its defects if his lungs were in better shape. They are attributing his sickness at this point to the pulmonary hypertension. As we understand it, pulmonary hypertension is something that doctors don't really understand. They treat the symptoms of it but don't know how to treat the disease itself. Essentially Samuel is on medicine for it (the nitric oxcide) and on the oscillator. The other component of getting better from pulmonary hypertension is time. The flip side to that coin is that too much time on the ventilator can do permanent damage to his lungs. We don't know if he will improve or not, but we are certainly hopeful that he will. It's strange to long for a regular hospital room in the step-down unit -- a space that's our own where we can sleep at night and where Caleb and Joel can come join us and be with their brother. It sounds down-right heavenly.

The doctors have agreed it's a good idea to send Samuel's info and pictures to Children's Hospital of Boston. We asked about this, and they think it's a great idea to have another group of brains and eyes looking at Samuel's stuff. Perhaps they've seen something similar in recent years. We were grateful for their willingness to do this and even their humility in accepting our request so kindly.

The doctor, Dr. Kim, who is collecting the info to mail to Boston came up to Samuel's station when we were reading to him (Lewis's The Lion, the Witch, and the Wardrobe). He said he'd been looking over all our records starting with the OB report at my 20 week ultrasound, and he had new sympathy for us. He said, "You guys are on your 10th or 12th diagnosis! I can't believe it. I am amazed you guys are as calm as you are. This must be so frustrating for you. If I was you, I'd be wondering about our competence as doctors." Somehow that was really comforting and reassuring. It's nice to know the doctors see what a road this has already been for us and are sympathetic to our plight. He also seemed more encouraging about the outlook for Samuel. I asked about his mention of a transplant, and he said that was the most extreme option and certainly a place we don't hope to reach. He said best case scenario is that Samuel's lungs improve, he gets off the ventilator, and his heart can function with all the defects. I am happy to hear he thinks this is even a possibility! It is certainly what we fervently ask of the Lord.

This afternoon one of the fellows came to check on us. Yesterday she gave me a big hug when she left at the end of the day, and I burst into tears. She told me that she's praying for us -- and that meant a lot. It's encouraging to hear from a doctor. Anyway, when she checked in today, she asked what the other docs had told us this morning, and we recounted Dr. Kim's conversation. She said that when we came in last week, she was amazed at our calm as well. I said, "That's because of our Lord Jesus." Normally I don't think I would have said something like that, but these days it's what comes spilling out. It's what we have -- our hope, our strength, our joy. It would be a falsehood to attribute our calm to anything else.

As for the oscillator, they were slowly weaning Samuel off of it, but his blood gas results were less than encouraging, so we're back to the levels Samuel started on yesterday. That's been discouraging. And he's still on the paralytic. That, for me, is the worst part. He can't swallow while he's on it, and his eyes don't produce tears, so they have to put artificial tears in his eyes every few hours and suction out his mouth. He doesn't look well while he's on it, and I hope we don't have to stay on it long.

We did get back Samuel's chromosone tests, and the results were normal. No Down Syndrome, no DiGeorges. They sent off for a myriad of other possible abnormalities, but we won't hear about them for another couple of weeks. We were grateful for this news today.

Apparently Caleb had another great day at preschool, and he learned his fiancee's name. :) I just talked to him on the phone, and he was thrilled to tell me. I guess he rescued her during recess when she was trapped. Too cute. And Joel got a haircut with Gab'm today. I haven't seen it yet, but he was in DIRE need of one. Normally he hates getting it cut, but Mom said he did great today. She must be a miracle worker.

I actually answered my first phone call today. I have avoided the phone all along because I really don't trust myself to keep it together. I do much better writing it down than I do talking about it. But I made an exception for my brother. And, no surprise, it was a tear-filled conversation, but I was grateful to talk to him and for his kind love. He always has been a safe place for me, and I am thankful for him. I love you, Matthew.

I am continually humbled by the love people have shown us. The Lord has burdened people's hearts to pray for our family, and sometimes it astounds me. Bryan works with small group leaders at our church, and a former leader made a prayer blanket for Samuel. They had several people pray over it, and it has verses written all over it along with Samuel's name in Hebrew and several meanings of Samuel. It covers him in his little bed. Many people have written us truly touching emails about how they have had Samuel on their hearts and how they are praying for him -- and some of these people I've never even met. I am in awe of how God raises up an army to fight for us and encourage us. It's an immeasurable gift, to be sure.

I am repeatedly reminded that life is in God's hands, and they are hands that we can trust. What a good God we serve. Thanks, Lord, for walking with us each moment of each day and for giving us Samuel. He is the gift we asked for, and we love him just the way he is. Please touch his lungs and his heart and heal his little body. May we be able to bring home a happy and healthy baby boy soon. We love you, Jesus. Amen.


  1. I've been thinking of you all day and echoing the prayer your mom wrote in her last posting.

    One of my closest friends has a niece who was born with a rare heart defect and benefited from the doctors at the Children's Hospital in Boston. Like you, I think the more feedback you can receive on Samuel's case, the better. Let's hope and pray that time brings healing for Samuel, who is so brave and so loved.

  2. I'm thankful that you are Samuel's parents. You are incredible! Hugs, Jeanne

  3. Hi Kathryn and Bryan and Samuel, I know you know this, but we haven't stopped thinking about you and praying for you all.Please let us know ANYTHING that we can do.Just name it.We all long to give you hugs. We just hung up the phone a little bit ago after hearing about Caleb's fiance. "She is just in love with me", he said.He told Jonathan that he said "Sure" two times to Lauren...but he will marry her when he is bigger. Good idea!!! ;)
    Love, Colleen, Dave, Jonathan and Emily xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxooxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxo

  4. Thank you, Kathryn and Bryan, for being so transparent with your followers! I am glad for a better day today! Our thoughts and prayers continue to be with you guys and little Samuel!
    The Tates

  5. So so thankful for a better day. Praise you Jesus for these encouragements. Praying for everything moment by moment. Thank you so much for keeping up the posts. We anxiously await each one and continue to come before our Lord with each bit of information. So so so much love.

  6. Andy once said something along the lines of, "no one signs up for this." One can only hope to respond with the same faithfulness with which you and Bryan have responded. May God continue to give you the strength to get through every second of every minute of every hour of every day.

  7. I am praying for all of you, and my heart is deeply burdened for you as you walk through this. May the hands of God be large enough in your hearts to carry all your hurt, fears and questions, and small enough to reach into Samuel's little body and heal him to wholeness. With love. Lincoln

  8. Bryan and Kathryn, please know that Nancy and I are praying, as is our small group, for God's grace to fill you both. You will never be closer to Him than now. His light is shining brightly through you to more people than you can imagine. God Bless you all, we love you! Paul & Nancy Wilhelm

  9. Bryan and Kathryn, please know you and your precious family are being covered in prayer! God is faithful to carry you through this time. Much love, Amy and Russell Todd

  10. Bryan and Kathryn, I am so encouraged by your faith and hope in our heavenly father. I too have hope and faith in him that he is and always has been in control of baby Samuel's heart, lungs and all his organs. My prayer daily is that God will heal your little boy, I don't care how he does it, I just plead with him to do a miraculous work in your baby. My heart is so burdened for you to hold him and feed him. I pray that this day will come soon. A verse I have been praying for you is this: 2 tim 1:12 I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him for that day. I pray that God continues to give you peace, the doctors outstanding wisdom and Samuel comfort and protection. Love, Lydia