Tuesday, August 30, 2011

Bottles and More

Sometimes I can write nice sentences and put words together coherently. But not so much today, apparently. I blame the sleep deprivation.

I did, however, want to update y'all on Caden and life for us right now. And share some pictures. Because y'all know I love me some pictures of my babies.
Last time I updated on prayer requests, one of my big ones was that Caden would learn how to drink out of a bottle. And I have to thank you for being so faithful in your prayers, because he is making great progress in that area. At the beginning of each feeding "cycle" we start out by offering him his bottle. He is supposed to drink 60ml of fortified breast milk (over one hour when it's through the feeding tube). He has now been taking 30-40 of those 60ml by bottle before getting worn out. And a few times over the past few days, he has taken the entire bottle, meaning we dont have to feed him through the tube at all. Of course, when he does take the whole bottle it takes him an hour and a half, meaning it doesn't save us any time or buy us any sleep. . . That said, we are so so grateful he is moving in the right direction and we are hopeful he can get his feeding tube out soon!!
Jayci is still a hot mess. She's actually really sweet to her brother, she's just almost three and throws fits accordingly. We are excited that she goes back to school tomorrow, hoping it will offer her a sense of normalcy, and give us a chance to rest a little more too.
 
Caden has his first appointment with his cardiologist on Thursday and then another appointment with his pediatrician on Friday. We will update y'all on what we learn. We are praying that everything looks perfect!

Monday, August 29, 2011

Ministry x 2

I felt an inkling in my spirit the first time Adam wheeled me into the cardiac family waiting room at Children's Healthcare of Atlanta. I saw the other parents with eyes that mirrored my own: full of uncertainty and rimmed in tears. We watched and listened to the hushed conversations brimming with fear. And I knew. I told Adam that I just knew that this was an opportunity to minister. A chance to show people Jesus.

But I didn't want it. This wasn't the ministry we had signed up for. We already had a ministry. A house in the ghetto that we closed on literally the day before Caden was born. Our ministry was to our neighborhood, to the kids next door who needed Jesus desperately, to the pregnant teenager who had been staying in our spare bedroom . . . Hadn't we already given up so much? Didn't we give up our cushy salaries to live on support? Hadn't we left our comfortable house in the suburbs to follow Jesus into the broken places of our city?

Sitting in the ICU waiting room, I felt my heart playing tug-of-war with God. I reminded Him of everything we had done for Him, everything we were doing for Him, everything we gave up for Him.

And I felt him whisper to my spirit: it's not enough.

It's not enough for me to give up parts of myself, to give up the things I'm willing to sacrifice in order to serve Him. He wants every single part of me. Every part of my life. Including our son. For His glory.

Despite what I might think is best, or what I might believe He is calling me to, it is ultimately His will that prevails, for my good. And I have seen God move more powerfully through everything with Caden than I could have ever imagined.

Do I wish it could have been accomplished differently? Probably.

Would I want to take away the hurt and pain that Caden has been through? For sure.

But one thing I know is that God has been glorified time and again by Caden's story, despite our reluctance to accept the ministry He had chosen for us. And our marriage, and our faith, have been strengthened and refined immeasurably in the past three weeks.


We have also watched our two ministries collide, evidence of God's perfect plan even in what doesn't make sense to us. Our capacity for loving others, for extending grace, has been deepened. And not only that, but we have already seen God using our story to reach some of our neighbors.

Not to mention that many of the kiddos we work with (and their sweet mommas) have been calling to check on us, to love us well and encourage us through our darkest moments. It is humbling to realize that our hearts might not have been in the right places. To recognize that we thought we had all the answers, that we somehow believed (albeit subconsciously) that we were going to "fix" our neighborhood, transform the kids we mentor. When the truth is that God is using them just as powerfully to transform us.

One of the boys we mentor sent me this text message a few days ago: "i jus want to say i love you and your family i am still praying for little caden and i hope he is ok." I was brought to my knees to realize that God works in mysterious ways. And that He sometimes uses those we think we are helping to help us. To love us in ways we didn't even know we needed.

I am still figuring it out. Still trying to decipher what our new ministries look like, what life should look like now. But one of our kiddos showed up on our doorstep tonight, and we showed her Caden's scars, and shared his story . . . and trusted that God is using Caden's heart to change hearts in inner-city Atlanta, and we are beyond honored to be a part of it.

Psalm 86:4-6, "Happy are those who are strong in the Lord... When they walk through the Valley of Weeping, it will become a place of refreshing springs, where pools of blessing collect after the rains."

Friday, August 26, 2011

Except When I'm Not

Lately, I've been getting a lot of people telling me what a great mom I am, and what an "inspiration" I am. Which, I must admit, is both flattering and encouraging, especially during a particularly rough time in my life. And, most of the time, I can somewhat believe it might be true. Except when it's not. And today, my friends, was one of those days. I was ugly to Jayci and Adam and lost my temper again and again. Caden is getting stronger (which is an absolutely amazing, wonderful thing) but that means he's crying more. A lot more. His reflux is terrible, and he just seems uncomfortable all the time. Which means we hold him and rock him and bounce him. Which is a dream come true. Except that we also have a three year old who needs attention. And who doesn't have school this week.

Quite honestly, Jayci was a perfect angel all morning. She was so so sweet to Caden, and obedient, and just a joy in every sense of the word. 

But then she decided not to nap. And to draw all over herself and her room with blue marker instead. And to throw many large fits over every little thing. And my plan for making it through the day was to take a nap while Jayci napped because, you know, the whole not sleeping thing because of a fussy baby with a grueling feeding schedule. But while all of those things are viable reasons for my behavior, they are not excuses, and I feel terrible about losing my temper and acting ugly.

Because there is no reason for me to act a fool, when I am blessed with a sweet miracle baby and a beautiful little girl, not to mention an amazing husband and supportive friends.

So I needed to take a minute to apologize, and to cover myself, once again with grace and mercy, because I am a sinner who fails again and again. And I am so thankful that I serve a God who forgives me and wipes the slate clean, whose mercies are new every morning.

I also needed to remind myself of just how beautiful my life is. And how much God has helped us overcome in the last two weeks. And how he has healed Caden's heart, and he has the scar to prove it. And how He is already knitting Jayci and Caden together in beautiful ways. And how He always creates beautiful things, even when I don't do a good job being a part of that.











Thursday, August 25, 2011

With Rejoicing

Yesterday, we took Caden back to Children's at Egleston to see his surgeon for his first follow-up appointment. He had an x-ray and then met with his surgeon, Dr. Kanter. Dr. Kanter said that everything looked great! His x-ray was clear, his incision is healing well, his echo looked good, and everything appears to be going as well as it could possibly be going. Dr. Kanter pointed out that Caden's surgery was one of the more major surgeries they do at Children's, and he was pleased with how well he was doing considering that he had such major surgery. They even said that Caden can hopefully be off his feeding tube in a week or two! They also said that they are hopeful that his next surgery wont be for another 5 years at least. We go see Caden's cardiologist next week, and they will continue to monitor that left ventricle and see how that progresses and what that means for future surgeries.

For some reason, I feel reluctant to say that God has miraculously healed our son. Maybe it's because I don't know, for sure, that he's "better." Or I'm scared that something will still go wrong.  . . Regardless of my own fears and doubts, however, the truth is that God deserves all the glory for the things He has already done to heal Caden's heart. The fact that Caden is home with us, that he is snuggled in our arms, that the doctors are pleased with his progress . . . that's a miracle. And we are thankful and joyful in knowing that our prayers, and y'alls prayers, have been answered. And we have to have faith that they will continue to be answered each step of the way.

"You have turned for me my mourning into dancing; you have loosed my sackcloth and clothed me with gladness." - Psalm 30:11

We are truly moved to tears every time we think about the powerful impact that Caden's life has already had on so many people. We are honored and blessed and humbled that we get to be a part of his life, that we have the privilege of being entrusted with his life. I am blown away by the number of people who are praying for Caden's healing and for our peace and comfort, who have seen their prayers answered, and their faith renewed. Every note and email y'all send is balm for our souls, and I only wish I could sit down and thank each and every one of you over diet coke and cheese dip. Because the truth is that Adam and I are nothing special. God gets all the glory for the ways He is using Caden's special heart to change hearts all over the world.

Yesterday at Caden's doctor's appointment, the nurse practitioner who works with Dr. Kanter told Adam that someone at her church sent her our blog, and she has been praying for Caden, without even knowing that he was/is one of her patients! What a mighty God we serve that He works diligently to cover us with His grace, even in the smallest details! So thank you for sharing Caden's story, and we hope you will continue to do so as he recovers.

The doctor told us that "just living" is exercise for our little guy right now. He breaths faster and his heart works harder as it tries to heal and adapt. So continue to pray that with each beat, his heart will be healed and strengthened. Caden has also been having some reflux issues (they told us that most heart babies do because of all the tubes, medications etc), so please pray that he wont be in any more pain - poor little man has been through enough already! And, most importantly, pray with thanksgiving and tell people about the wonders that God is doing in and through Caden's little tiny heart.

Wednesday, August 24, 2011

For Jayci

Dear sweet Jayci,

I was afraid that one day you would figure out this internet thing and read this blog and think that Caden was all we thought about these days . . .And I want you to know, beyond every shadow of a doubt, that you are so so loved and cherished by your daddy and me. Every time you stayed with grandparents because Caden was in the hospital and we were visiting him, we told each other that we missed having you with us. Some of the sweetest times I've had in the past few weeks, times that have sustained my heart, have been times I spent with you. Snuggling together in bed, praying for brother, hiding in your tent, reading stories under the covers, making pancakes, drawing pictures . . .You are a continual source of joy and life for us, and we could not be prouder of the little girl that you are.
I can only imagine that some feelings of uncertainty and jealously come along with being a new sister. My mom (your oma) told me that after a few weeks of having auntie Sarah home from the hospital, I insisted that they bring her back. And because your brother has a very special heart, he needs even more loving care and gets even more attention, so I am sure you can feel that and I hope you know that you are every bit as special and important to us as Caden is.

Your heart is special too. I know because I see it every day. I see it in the way you hug me when I'm sad about Caden, and when you dance with your daddy in the living room. I see it when you hold "brother's" finger, and when you gently kiss the top of his head. I need you to know, sweet Jayci, that your daddy and I see your heart and we think it is beautiful.
When I see how grown-up you are, how much you've become a little girl and less of a baby, I feel a little sad at how fast things life moves. I can remember holding you for the first time like it was yesterday, and I have treasured every moment with you since then.

You are a bundle of energy and quite a mess sometimes, but I suppose that comes with the territory of being almost 3 years old. You are shy at first around new people, and I can see a lot of myself in your quieter side. It's a little disconcerting, really, to see pieces of yourself in someone else. And I'm praying every day that those parts of me that are in you will be parts that you can love and accept, even when you're a teenager and really, really, really don't want to be anything like your mom.

My biggest prayer for you is that you would be secure in Christ. That you would know who you are, how loved you are, how special you are. That you would see how carefully God crafted you, and our whole family, according to a perfect plan.
Speaking of plans, I'm pretty sure that God has some big plans for you my sweet little girl. I hope and pray that your beautiful heart will fall more and more in love with a God who can be trusted every single day. And I pray that these days, when life was hard because your brother was sick, will be a time that molds you and shapes you into something even more beautiful because it teaches you about Him.
Know that you are loved and cherished deeply by daddy and me. And that Caden is absolutely blessed to have you as his big sister. But more than any of that, we pray you will know that you have a heavenly Father who loves you and cherishes you and cares for you every single minute of every single day.
We love you beautiful girl,
Mommy (and Daddy)

Tuesday, August 23, 2011

Unchanging

It is so good to be home. Good, but weird. The absurd normalcy of everything, the fact that life continues on, seems unimaginable somehow. Like time should stop because our son has miraculously been returned to us. Like temper tantrums from our three year old should magically disappear. Like people should still be emailing us every day with encouragement and prayers. Like things shouldn't keep marching on. But they do. And somehow, we need to find our footing in this new normal. We need to figure out how to function on (very very) limited sleep, just like all parents of a newborn do. We need to decipher how to allow people to help, how to embrace community and life again, while protecting our son from infection and not allowing ourselves to retreat into a hole . . .

My heart feels a strange combination of  joy and hope, coupled with exhaustion and sadness in knowing everything our son has been through and continues to go through on a daily basis. I've been a little melancholy all day, looking at the road we're on and realizing that it is literally impossible for us to do this alone. It is impossible for us to force ourselves to feel optimistic, to stay on top of feeding schedules and medications and cleaning everything, to connect with each other, and to give Jayci the attention and love she needs and deserves. . . And thinking about all of that, I am struck by the realization that we need the Lord to carry us through this chapter of our story just as deeply as we needed Him while Caden was in the hospital. Although things seem less desperate, that doesn't mean we should be any less desperate for Him.

Just as our desperate need for God hasn't changed, I am also realizing today that He Himself hasn't changed.

The Jesus I need right now is the same Jesus I followed with eager anticipation and expectation while I carried Caden for nine months. The same God we followed into full-time ministry, and the same God who got us through the last year when we felt time and time again like giving up on our ministry. He is the same God we clung to while my son's heart was being operated on, the God who drew us near while we watched Caden's heart beating as he grappled for life. And He is the same God who will undoubtedly bring us through this as well. Who will refresh us and renew our strength when we haven't slept. Who will cover us with enough grace and mercy to handle each new day. Who continues to hold both our sweet Caden, and our entire family, in His loving arms.


There have been times, and I am certain there will continue to be times, in this journey when God seems obscured by the shadows of questions without answers and hurts without healing. And yet I am grateful even for those times because we are realizing that we serve a God who can handle our hurts and doubts. Who doesn't change even when we question who He is and what He's doing. Who doesn't mind when we yell and rant that this isn't fair, that Caden doesn't deserve all this hurt. Who Himself knows the sorrow of surrendering a son, and who only asks that we bring all our hurts and lay them at His feet.

…in all these things we are more conquerors through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Romans 8:37-39

Sunday, August 21, 2011

There's no place like home

I remember when we brought Jayci home from the hospital (almost 3 years ago now) thinking they couldn't be seriously letting us bring this baby home and trusting us to take care of her without some further training or something . . . Multiply that feeling by about a million, and that's how I felt yesterday when we got to bring Caden home.

I know they wouldn't let us come home from the hospital if he wasn't ready - but without his monitors and such, I've been a hot mess worrying about him. I'm trying to go about my normal life with a "normal" newborn, trusting the Lord and trusting myself. I mean, I have to stand on the truth that God would NOT have made me Caden's momma if He hadn't also equipped me to take care of him. I need to stop letting my insecurities rule me, and instead rest in the same trust and peace that enveloped me when we were in the hospital.


 Daddy taking good care of his baby boy . . .
I thought I was scared to give Jayci a bath for the first time . . . That was nothing compared to this. I was too panicked to even pick up my camera during the actual bath, so you just get a few shots of our little sweetie after his bath. Poor thing has so much tape gunk all over him from all his IVs and such, I dont know how we will ever get it all off.

Ready for bed!
The obvious question for us is "now what?" What does life look like now that Caden's home?

Well first of all, we have to try and walk the delicate line between allowing ourselves to be excited and rejoice over the miraculous things Jesus has done in our son's heart, and also recognize that we still have a long road ahead of us.

Caden has three doctor's appointments in the next two weeks, and he will have continual follow up and monitoring to see if he needs another surgery. We would still love for everyone to be praying for that left ventricle to remodel, because another surgery just seems like it would do us all in right now . . .

He came home on a feeding tube and several medications. And, quite honestly, the feeding schedule is grueling. I am not complaining and I couldn't be happier that we get the joy of feeding him ourselves at home, and that he has come so far already . . . but it takes an hour and a half every three hours to feed him through his feeding tube, and somewhere in there I have to pump too. So basically we have no hope of sleeping for more than an hour at a time. I'm not sure how we're going to survive once Jayci comes back from nana's house this afternoon . . . At the beginning of each feeding we have to try for 20 minutes or so to give him a bottle. He has to relearn how to suck and swallow and do all the things that normally come instinctually to a newborn, because for so long he received his nutrition through an iv, was paralyzed, etc.

We would love for you to keep Caden in your prayers. That he would adjust to being home, that his heart would be strong and continue to heal so he wouldn't need more surgery. For his bone to heal (they cut his sternum for the surgery and it takes 6-8 weeks to heal), and for there to be no infection in his incision. Please also pray for us that we will figure out how to juggle his feeding and medication schedule and get some rest ourselves. And for Jayci coming home - for her to adjust well, for her to understand that she HAS to be gentle with her brother, and for us to have wisdom in handling both of them together.

We are so thankful for the amazing things God has done. And for the people He has brought to carry us and support us through the last two weeks, as well as the next months and years as we navigate being Caden's mommy and daddy.

Friday, August 19, 2011

Pictures, as promised

I don't have a lot of words today. We are enjoying being with our boy, slightly terrified by all the medical stuff we have to learn in order to take care of him on our own, and hopeful that we might be getting to go home as soon as tomorrow!!! But I learned my lesson about getting my hopes up about when things will happen, and we are learning (again) that everything will happen only in the Lord's perfect timing.
 Be warned, these next ones are about the sweetest pictures ever - they might make you cry. Or maybe that was just me. Jayci is such a great big sister already, and my heart could not have been happier to see my two little loves together.

Here, Jayci is telling her daddy "no daddy, I got this." Do you see the look she's giving him? Intense.

Seriously, this is my favorite picture ever.

And just so we will always remember our little guy with his stitches and pacemaker . . . remember and marvel at all the miracles God did to heal sweet Caden's heart. And one day, we are praying we will be able to say that his heart has been completely healed, with no more fears of future surgeries, limitations, or complications.


"Let the beloved of the LORD rest secure in him,
   for he shields him all day long,
   and the one the LORD loves rests between his shoulders.
” Deut 33:12

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