Wednesday, 27 June 2012

God Works in Mysterious Ways.

I believe that God does not do things on accident, but sometimes he works in mysterious ways. I am not always sure what the purpose is behind things that happen, but I know he loves us. I want to tell you a story about a boy named Chandler, and I want you to know that I may not understand the reason why it happened, but I believe God's love can be felt throughout it. 

My brother and sister-in-law were excited to find out whether or not baby #4 would be a boy or a girl. They had debated for a while whether or not they should even try for baby #4, and once the decision was made to have another baby they were very excited for his/her coming. At the anatomy appointment, where they were to discover the sex of the baby, they also discovered that something was wrong with the baby's heart. Excitement turned to anxiety as they waited for their appointment with the specialist. 

When they met up with the specialist they discovered that their baby boy had HLHS (hypoplastic left heart syndrome). Basically, the left side of his heart did not function at all. If HLHS babies receive intervention right after birth they might make it. Unfortunately, Chandler also had something wrong with the right side of his heart, which meant intervention would be impossible. My brother and sister-in-law were told they would have a few short days with their baby after his birth, and to be prepared for his passing. 

My family fasted and prayed that things with Chandler would be okay...whatever 'okay' means in God's plan. I guess you could say we were fasting and praying for the ability to accept peacefully what may happen. About a month later, at another ultrasound, the doctors were astounded. I would call it a miracle. The right side of Chandler's heart 'magically' grew the veins that he would need to have the operation after birth that might save his life. My brother and sister-in-law chose Duke University Hospital for Chandler's delivery since there was a pediatric heart surgeon there and it's only about an hour away from where they live.  

My sister-in-law was induced and beautiful Chandler was brought into this world.
Born Sep. 16, 2010
A couple of days later they did his first surgery. Everything went smoothly and they just had to wait for him to recover.
Standard procedure requires the chest
to be left open because of swelling.
He started to look much better.

Closed up with less wires and tape.
Mom,  Dad, and visitors were able to start holding him when they came to visit.

Chandler & Mom.
A few months later, far too soon, it was time for Chandler's second surgery. If this one went well, then he wouldn't need another surgery again for a few years. I don't know all of the hairy details, but I do know that while the surgery was ultimately successful, it was not as successful as they were hoping. Apparently there were still issues with the veins on the right side of his heart. My brother and sister-in-law were once again told to be prepared for their son's passing, and he was released from the hospital.

Again, my family prayed that everything with Chandler would be okay...whatever 'okay' might mean in God's plan. Miraculously, once again, Chandler pulled through. Sadly, his body was continually struggling. During the surgery they accidentally damaged something that affected his swallowing reflex. His life depended on a feeding tube. His oxygen was regularly low and he had to be hooked up to oxygen frequently. Because of the feeding tube he wasn't able to get any tummy time to help him develop his muscles. When I finally met him he was 8 months old and still couldn't roll over or sit up on his own. 

This didn't stop him from wanting to be an active participant in his family's life.

Getting his turn with the pinata.
Practicing sitting in the Bumbo.
Playtime with Mom.
A little after his first birthday Chandler's body's struggles caught up with him. He was going to need another surgery that would determine whether or not he would make it. In January my brother and sister-in-law took him to Philadelphia for the big surgery.

Again my family prayed that everything with Chandler would be okay...whatever 'okay' means in God's plan for Chandler. We were grateful to hear that things were going well. Chandler was able to return home. He was very happy and able to go about his Chandler-business. 

At the beach.

Eating out with Dad.

A couple of days ago I got a text from my littler brother (who is living with this family as he works for them this summer) saying that my brother and sister-in-law were at the hospital with Chandler because his oxygen had drastically dropped. The next news I had heard was from my mom saying that Chandler had been sent home from the hospital with my brother and sister-in-law being told to prepare for his passing, again.

My family prayed that  Chandler would be okay...whatever 'okay' might mean in God's plan for Chandler. It felt different this time. This time it felt like a preparation. My parents were going to fly out this weekend to help comfort and support my brother's family, but then they felt very strongly that they needed to get tickets for earlier than that. They bought tickets for early Tuesday morning and were all packed and ready to go on Monday night.

On Tuesday morning I popped awake at 3:30am. This is usually because I'm hungry or having pregnant-lady bladder issues, but this time it was neither. I was awake thinking about Chandler. At 4:30am I received a text from my mom saying that Chandler was unresponsive, but breathing, and she would fill me in when they got to North Carolina that evening. My parents were able to hold and cradle Chandler that night even though he was unconscious. We recognized that there could yet be another miracle, but it didn't feel like it this time.

We were now praying that when he passed both of his parents would be by his side and that it would be peaceful. Mercifully, that is what happened.

Chandler passed away at 10:00am (Eastern Time Zone) this morning with his parents holding him. I believe God knew it would have been more than they could bear if they had found him passed away in his crib.

I'm writing this out to share for a few reasons:
It's cathartic. I've been thinking about his short, miraculous life for the past two days and I just needed to be able to spill it out. I am so glad that Chandler no longer has to struggle, but I am so very sad that my brother and sister-in-law lost a child.
It remind me to be grateful. I get a little caught up in the stretch marks I'm genetically predisposed to get and am dreading to find. I get discouraged when I see all of the varicose veins popping up left and right on my body. These things are vain and unimportant when I realize how blessed I am to be growing a healthy baby who has a high chance of making it to adulthood.
It helps me feel peace. I haven't asked, "Why, God?" because I know that he works in mysterious ways and he wouldn't do anything like this to hurt somebody. Chandler had a purpose on this earth and he has fulfilled it and he is now back with a loving Heavenly Father.

Mostly, here's to Chandler, who bravely and happily fought until his Father called him home.


  1. That was beautiful. Thank you for documenting this wonderful life. We were privileged to be a part of Chandler's life on this earth.

  2. Thank you for sharing, it is never an easy thing but I am grateful that you shared with everyone. Your family is in my prayers.

  3. Thank you for sharing. That's intense and personal and has me wrapped up in Chandler's story. I've been thinking of your family and hoping that this whole experience brings more peace than pain. xoxoxo

  4. Thanks for sharing, and so sorry for your loss. What a cute little boy!


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