Part of Something Bigger

"I honestly believe that God has a special plan for Caleb," his pediatrician told me at his 12 month baby visit. "He has already touched so many lives each day of his life just by living."

She went on to tell me about her church prayer tree, and how Caleb has been a part of it since we first met her.

Although other people have said exactly what his doctor said this morning, it made me stop and think. I have thought often about how unfair it has been, the things Caleb has endured, but this morning I thought differently.

If Caleb, if we, didn't have to go through these things, would we be the same people today? No. Well, maybe Caleb because he is a baby, but he wouldn't be the same person he is going to be 5 years from now, or 50 years from now. Our experiences truly shape us, and even though Caleb won't remember these things, we will. We will share it with him, and it will shape him, for God's purpose.

It became so clear to me. It is not whether something is fair or unfair. Countless babies endure this and much worse, and it is not fair for any of them. In our human minds, no child should have to endure hardships, but they do, for a reason.

This morning, I feel blessed, more than blessed, HONORED. God chose us-John, Caleb and me-to bear this burden, so that we can be part of something great, something bigger than us. Coming from his Caleb's mom this may not bear much weight, but I know what they say is true: God has great plans for Caleb. And however small my part may be in it, I still get to be part of it. God trusted me with this child. I am so honored, but I know that I have a great responsibility, first to God, second to John, third to Caleb. It is on us to help Caleb find God's path for him.

Wow. Major responsibility.

I will not be able to do this without God, obviously. But, what I think is important today, is that I finally feel it. To me, that is a vital step. I cannot keep thinking about fair or unfair circumstances; instead, I have to remember that God's plan is bigger than what is fair and what is not. His plan is bigger than me. But He is still letting me be a part of it.

His doctor is not the first person to tell me this. Family members' churches all over the country, world even, have been praying for Caleb since he was just a few days old. He is on so many prayer lists that I can't keep count. Family members have often told us they feel that Caleb is meant for something great.

My Uncle John and Aunt Ada's church, which my parents have recently started attending, refer to Caleb as "their baby." It is truly amazing how many lives one individual, one very small individual, can touch. Complete strangers love our son, and I hope that one day they can meet him.

I pray that we are strong enough, that we trust God enough, to follow God's path.

Keep praying for us, keep praying for Caleb. He's meant for great things.

Romans 5:3-5
Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us.

Almost One

Caleb turns one in just two days. I can't believe the first year is almost over. It's been a whirlwind, full of lots of highs and some really low lows.

I find myself thinking back to those last few days of my pregnancy, my water breaking. There was such a nervous excitement in the air. We couldn't believe we were about to meet our son.

Then, after just 10 hours, we met Caleb. He came out screaming, which was really indicative of his personality. That first day was amazing but strange. It seemed so surreal that I had a baby.

After just two days, pure joy and excitement gave way to a terror and helplessness I have never known. Caleb was so sick, and we were not sure we'd get to take him home, much less celebrate his first birthday.

As you all know, our strong boy pulled through. Since that wonderful night he was born, Caleb has undergone three surgeries, two minor and obviously the big transplant surgery. We have dealt, and are still dealing, with G Tube issues.

I think about all we have been through medically, but then I wonder, why are those the things I think of when I look back. Those were big things, but they weren't everything.

In the past year, we have seen Caleb's beautiful smile almost every day since he was about two months old. We get to hear his amazing laughter and watch him soak in the world around him with a look of wonder or deep concentration. We watch him learn while he plays or looks at things, and, on rare occasions, we get to just sit and cuddle with him. We get the opportunity to walk into his view and see his face light up.

His first year has not been like most first years, but it so many ways it has been. He has grown, learned and played. He has brought us the joy that any baby brings to their parents each day of his life.

On his birthday, I don't want to remember just the big things we have been through, but of all the small joys that we have been blessed to experience every day.


1 Samuel 1:27
For this child I prayed; and the Lord hath given me my petition which I asked of him

New Baby Smell

I've always heard that new babies smell so good. I don't remember that smell on Caleb. I know he smelled like a new baby for those first couple of days, but I can't remember that smell.

When we finally got home after that first stint in the hospital, the way Caleb smelled was the furthest thing from my mind. I knew he didn't have the "new baby smell." Instead, he smelled of his special formula that has been described as smelling like powdered cheese or rotten potatoes. It wasn't a strong smell, until he spit up, but it was there.

"I can smell that Bufenyl," one of his doctor's said as soon as he walked into our room during an appointment last December.

This made me sad. I knew I could smell that awful formula on him, but I had no idea other people could smell his medications. John often described the Bufenyl as smelling like raw fish, and it did smell horrible.

I remember feeling down about it because I hated the thought of my baby smelling so bad. Between the spit up, formula and medication I knew he couldn't smell very good to other people. I, however, was used to his smell and didn't notice it, and I thought that made it even worse. I knew, then, that he smelled, but I couldn't do anything to change it.

This morning, I could smell Caleb's sweet fragrance. It wasn't a smell of gross formula or stinky medicine, but a comforting, pleasant scent. I doubt he smells like a new baby, being almost a year old, but it is the closest thing I've come to experiencing that smell on him.

Five months ago, he smelled like a formula baby on horribly smelly medication. Now, he smells like a normal baby. And I can't get enough of it.

Psalm 103:1-5
Praise the Lord, O my soul; all my inmost being, praise His holy name. Praise the Lord, O my soul, and forget not all His benefits, who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's.

Coming Home to a New Life

Four weeks ago, Caleb got a new liver.  Three weeks ago we came home to a new life, a new routine.

 

Gone are the nights of making special formula for Caleb. Instead, he drinks breast milk and cows milk, when he wants to and how much he wants. No more forcing a specified amount into his tummy. He eats when he wants now, and that is such an awesome feeling, although scary. For over ten months, we measured out his food, worrying over how much protein and calories he got. Now, we leave it up to him.

Gone are the horrible smelling medications he had to take three times a day. Now, those two medications are replaced with about seven. All but one, maybe two, of these medications are temporary. As the days turn into months, the doctors will take him off these medications, until he is down to one immunosuppressant.

Gone is the late night tube feeding. Now, we can all be in bed by 8 o'clock if that's what we want, and sometimes, that's exactly what I want.

Gone are the worries of having to feed him when we are out running errands. Now, we can just buy some milk or food that he likes while we are out.


Gone is the question of whether Caleb is getting sick, if his ammonia levels are rising.

Life is so different in our house, and it feels awesome.

 

It took a few weeks, but we finally have Caleb back to normal. Our new routine consists of medications and appointments, but they don't dominate are week. Soon, Caleb will start physical and occupational therapy. He is down to lab work just once a week. Once we get this button sorted out, we are hoping to space out his appointments to once every two weeks.

He is doing beautifully. The donor is doing awesome. We are so blessed and so thankful.


2 Samuel 22: 2-4
He said: "The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation. He is my stronghold, my refug
e and my savior, from violent men you save me. I call to the Lord, who is worthy of praise, and I am saved from my enemies."

Psalm 100:4-5
Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name. For the Lord is good and His love endures forever; His faithfulness continues through all generations.

Transplanted

"Lord, give me peace. Keep me calm, so I can sleep." It was a simple prayer, said mid-week last week. Anxiety was starting to take its toll on me. I wanted a good night of rest before we had to go to the hospital.

"This liver is going to be perfect, even the doctors will be amazed." Although it belonged to no physical voice in the room, I heard it clear and in my soul. God was giving me the peace I had asked for just moments before. He was revealing His great plan for Caleb to me.

I woke the next day, feeling rested but still anxious. I remembered what I heard and felt. I was afraid to believe it, so I didn't share it with anyone.

Finally, it was Sunday. We loaded the car and made our way to the hospital, so Caleb could be admitted. It was a long, hard day. Caleb was stuck so many times we lost count. He was hurting and scared. He didn't want to sleep, so we didn't sleep.

Our parents arrived Sunday afternoon, to be with Caleb and give us support.

Although Sunday was a long day, and even longer night, we finally made it to Monday, exhausted and scared.

"They're coming to get him at 5:30 for prep," the nurse said.

"That's in 20 minutes."

She nodded. Although it had been a very long night trying to comfort Caleb, I wasn't ready for them to take him away from me. Fear gripped me, and I wondered if I only had a couple more hours with my son.

Monday was long. The six of us sat in various places in the hospital, waiting. All we could do was wait. We got a few updates but not many. The hours crawled by. They had taken Caleb into the OR at 7am; it was 5pm before we finally saw the surgeon.

"It's really amazing," he said, "the liver from the donor was more perfect than we had thought. It's size and shape were exactly what Caleb's body needed."

Tears immediately filled my eyes. All I could think about was God's voice from a few nights before. He had told me that this would happen, and I had not fully believed it, maybe I was too scared to or just not sure it was really God speaking to me.

The surgeon told us that Caleb was doing very well, as was the donor.

"You know," he said, tears brimmed in his eyes, "when I get to meet people like this donor, I believe, that it is the closest to meeting Jesus that I will come to on this earth'"

We won't have the privilege to meet Caleb's donor, but he has still shown us God's unfailing love and compassion.

As I write this, I am sitting in Caleb's room watching him fight to get his body back to normal. He is so strong and beautiful. God is in this room with us, with him.

Words can't express our gratitude to the people, those we know and those we don't, who were in constant prayer for our family.

Joshua 1:9

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

Psalm 136:1

Give thanks to the Lord, for he is good, for his steadfast love endures forever.

When Policy Trumps People

"Insurance has not approved the surgery."

"What does that mean?" I couldn't believe what I was hearing. We were just two days from the surgery, just one away from being admitted into the hospital.

"We will have to postpone the surgery until we can get the approval."

The week leading up to that phone call was long and stressful. Our days were spent fluctuating between a calm confidence and stressful doubt. We were so close to being on the other side of the surgery, and now we had to start over. This time it would be harder because now we were going to have to fight the insurance company.

About 1 month old

The insurance company claims that Caleb isn't sick enough for the transplant. According to their policy, a transplant is only approved when the patient is in liver failure and/or all other medical options have been exhausted. Since Caleb can remain relatively healthy on his current medications and a strict diet, he did not qualify for the transplant. Basically, we are being punished because we have taken care of him.

Since we got the news of the denial, we have been in the process of appealing it. We were told that we would have to appeal and have Caleb's case be under peer review, where it would be denied again. Then we could appeal a second time and actually work with the part of the insurance company that can change policy. Yes, we still had to follow the protocol despite a guaranteed denial for the second appeal.

Last week, we finally got the official denial for the first appeal. We are now working to appeal it for a second time. The doctors are confident that the surgery will be approved. We are hoping for an answer by week's end, but hoping and getting are two very different things.

Caleb's doctor told us that the debate is not whether or not the surgery is necessary but at what age it should happen. Some doctors believe that he needs to be 12 months old, while others, like his surgeon, liver doctor and pediatrician, believe that he is old enough if the right liver is selected.

The past couple of weeks have been pretty difficult for us, but that is for another blog. Today, I just wanted to keep you guys informed.

Pray that we are able to get this resolved quickly. While complete strangers are debating what is best for our child, we are working to keep Caleb healthy. As they debate his health, we worry over whether or not the Army will let us stay here long enough to get the surgery. As these strangers argue amongst themselves, we pray that we don't lose his donor.

Pray for our son, for his donor and for our calm during this storm.


Psalm 94:19
In the multitude of my anxieties within me, your comforts delight my soul.

Psalm 33:20-22
We wait in hope for the Lord; He is our help and our shield. In Him our hearts rejoice, for we trust in His holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you.

Good in Theory, Terrifying in Reality

January 20, 2014.

That's the day. The day the doctors have scheduled Caleb's transplant. It's twelve days away. Twelve. Although we thought and prayed long and hard about this decision and have been at peace with the decision, it is absolutely terrifying now that we are faced with a date, now that it is actually happening.

What if I only have twelve days left with my beautiful boy?

No, I can't think like that. Those thoughts cannot enter my mind.

But they do, and it's terrifying.

Caleb plays in his swing. I sit on the floor a few feet away, watching...and crying. Terrified of the consequences of this decision. In twelve days, good or bad, our lives will change. I want, no, need, to be at peace with this decision. My heart and mind have to be calm for my husband and my child.

But it's not.

I do the only thing I can think to do. Reach for God. My Bible is upstairs. It's too far away. I grab the next best thing I can find, a devotional. It was a Christmas gift from John's aunt, and it is the only thing within reach that I think will bring comfort.

I open it, and this is what I read.

See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland.

Isaiah 43:19

Wow. That's all I can say.

I turn the page.

We wait in hope for the Lord; He is our help and our shield. In Him our hearts rejoice, for we trust in His holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you.

Psalm 33:20-22

 Next page.

These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.

John 16:33

And the next page.

Be merciful to me, O God, be merciful to me! For my soul trusts in You; and in the shadow of Your wings I will make my refuge, until these calamities have passed by.

Psalm 57:1

O taste and see that the Lord is good! Blessed is the man who trusts and takes refuge in Him.

Psalm 34:8

Last one.

But I will restore you to health and heal your wounds, declares the Lord, because you are called an outcast, Zion for whom no one cares.

Jeremiah 30:17

God knows what we need, when we need it. We will persevere. We will get through this and will praise His great name before, during and after.

Meant for Caleb

So much has happened in the last few weeks. I haven't been able to sit down and finish out Caleb's story, but there is not much left to tell about his first month of life. I have decided that today's blog will be updating you on how the transplant preparations are progressing.

Last week, I started my testing to see if I am an eligible donor for Caleb. Due to insurance, we can only do this one at a time, so John will be tested in a couple of weeks. I have one more test left before I'm finished.

Caleb started his testing last week as well. We are almost finished with his tests. He needs to have a little more blood drawn for a few more labs and a chest x-ray. These should be finished Friday.

Yesterday and today were spent at the VCU Medical Center doing these tests. It has been a long couple of days, but we got a lot accomplished and a lot of information. Unfortunately, John wasn't able to go with us, but we managed the appointments just fine. Caleb was awesome.

I spoke with a liver doctor about being the donor, and they have a couple concerns they want to discuss with the surgeon. These aren't major problems for me but are things that may make the surgery difficult. I should find out soon whether or not I am a good donor candidate.

We want to share some pretty amazing news with you. God has truly blessed us and is amazing. I hope you are sitting down while reading this because you may be absolutely stunned by what I am going to share with you.

"So, there is a small concern that your liver may be too large for you to be a donor," one of our many transplant coordinators told me.

"Okay." It was the only thing I could think to say.

"It can still work," she said, "but we have a better match. It's a "Good Samaritan" donor. The little girl he was supposed to donate to had her transplant last week. The surgeon thinks he is a good match for Caleb. If this isn't something you want, if you'd rather the donor be a friend or family member, you don't have to accept."

"We want it," I blurted out. "Well, I need to talk to my husband first, but I can't see any reason why we wouldn't want it."

You read that correctly. I complete stranger, from a different part of the country, wants to donate part of his liver to our son. He's been on the list for two years, waiting to donate, but things keep happening that cause it to fall through.

"That's because he was meant for Caleb," I told John.

I hope you guys understand what I simply cannot express with words. This man wants to go through surgery, and not a easy, small surgery, major surgery, to give part of his body to a complete stranger. The compassion and selflessness of this act is hard for me to wrap my mind around. I am in awe and speechless. God is truly wonderful. I firmly believe that this man is meant for Caleb. He has been waiting for two years to be a donor. Caleb is only 8 months old. How amazing is our God?!?!

We have officially accepted the donor, but things can still happen that may change this. Please continue to pray that things go smoothly for the donor and for us. There is a slight, very slight, chance that this surgery could happen at the end of the month. It's unlikely, but possible. So please, continue to pray for my family. Thank you for the countless prayers that have already been said for us. The power of prayer is very evident in our lives.

Psalm 75:1-2
We give thanks to you, O God, we give thanks, for your Name is near; men tell of your wonderful deeds. You say, "I choose the appointed time; it is I who judge uprightly."