Sunday, October 12, 2014


Yesterday I participated in the Puget Sound Heart Walk. It is an annual event to raise money for research on heart disease and stroke. I walked in honor of three amazing people, and I thought it might be cool to share their stories. You can donate here.

Jill and Shane are amazing parents. They had two children already, and were now expecting their third. But when Joshua arrived, he only had half a heart. I have Jill's permission to share his story from her blog.


I am a mother. I'll admit though, sometimes not a very good one. 

I get lazy (can we just say- one time I used a dryer sheet on my kids head rather than give him a bath?!), I raise my voice, and my house is hardly ever clean. But one thing is for sure: I love my children. 

Joshua is the 2nd youngest of my 4 children. He was born August 16, 2010. He has been the child, who in his short life, has stretched me in ways I never could imagine. (read through my blog from April 20, 2010 for more on this) We have spent his entire life, from pregnancy to birth and beyond, expecting the worst, but hoping for the best.

At 11 weeks gestation, I was diagnosed with a subchorionic hemorrhage. Basically, I was gushing blood (for almost 21 days straight), and doctors found out that there was a hemorrhage between the sac and uterus. It started off small, but within days grew and grew and grew. We were told that it was just a matter of time before Joshua would pass and I would miscarry. I was told that it would be miracle if he made it to 18 weeks.

Well, 18 weeks came and went, the bleeding continued, and I was sent to a specialist. The specialist noticed that Joshua's heart glowed on one of his ultrasounds, but told us not to worry. I did just as he told me. I was stressed enough with the hemorrhage, and didn't want to even think about a heart issue on top of it all. So we went home and continued to trust that God would take care of Joshua.

At our 18 week gender scan (which we had already found out Joshua was a boy at 14 weeks!), the tech couldn't get a good view of the left side of Joshua's heart. She told us that he was laying in a funny position and that it was nothing to worry about. Once again, I chose not to worry. My OB looked over the ultrasound and decided to send us to a fetal/pediatric cardiologist. 

At 22 weeks we made our way down to Indianapolis for our fetal ECHO. It was then that our lives were turned upside down. Joshua was diagnosed with Hypoplastic Left Heart Syndrome. 

Hypoplastic Left Heart Syndrome or HLHS is a Congenital Heart Defect (CHD). Basically, Joshua only has 1/2 of his heart. The left side is hypoplastic, which means that it has not developed or is underdeveloped. 

The treatment for HLHS is a set of 3 open heart surgeries to "reroute" his heart. The Norwood surgery is the first surgery and took place at 3 days old on August 19, 2010. The Glenn should take place around 6 months old, and the Fontan is typically be performed between 2 and 3 years of age. He also had a shunt revision due to the shunt being too large which resulted in poor oxygen profusion to his body. That took place September 27, 2010.

Joshua was a fighter, and survived all sorts of odds in his short little life. We are amazed at his beauty and how perfectly God has created him- Broken heart and all!

On Oct. 6, 2010, Joshua's purpose here on Earth had been fulfilled and God called him Home. Joshua left this world in my arms and went directly into the arms of Jesus for complete healing. 

Our journey through life without Joshua is now just beginning. Thank you for joining us as we learn to live, love, and laugh again.


Posted Thursday, October 10, 2010:

This post is deeply DEEPLY personal. It is raw, and will probably be hard for some to read. 

I want to share with you my memories from the morning that Joshua died. The details from that morning are what haunt me at night. I am seeking counseling for PTSD, but it is good for me to get it talk about share it with others....if it doesn't make sense, I'm sorry. I'm not going to reread it or edit it.

Wed. Oct. 6, 2010

My dad was coming to spend the day with me. I was tired of sitting around the hospital by myself, and had decided that I could really use some company. My dad graciously accepted to come down and spend the day with me.

He called me at around 7:40am to tell me he was on his way. He also woke me up. You see, I had stayed late at the hospital the night before, and I had planned on sleeping in that morning. After my dad woke me up, I decided to quickly get out of bed, shower, and get over to the hospital to spend some quality time with my little man before my dad showed up.

I got to the hospital around 8:15. When I walked past the window to Joshua's room, I saw that he was kicking his feet, most likely crying. I entered his room and sure enough, he was crying. I quickly put my bags down, and went to his crib. I picked him up and said "Good Morning my sweet baby!!! How are you today? I've missed you." I gently kissed his head, and he immediately calmed down. I rocked him in my arms for a few minutes as I continued to snuggle him.

After being there for about 5 mintues or so, his O2 alarms started going off. They were in the low 60's (which for an HLHS baby a O2 sat that low is not completely uncommon.) I watched it and didn't panic, because it usually popped back up to the low 70's fairly quickly. After a few minutes of it being low, i finally started to worry. Joshua was calm, and I didn't want to put him down. After another minute, the nurse came in and decided to turn up his oxygen. He was up at 90%. We watched him for a few minutes, and his sats kept going lower and lower.

He was still calm, and was not blue. We messed with the pulse ox some (it was known to not pick up very well, and it was not correlating very well with the heart rate- so we thought maybe it was a bit of a malfunction). By the time we were done adjusting his pulse ox, his sats were in the 40's. That is when his heart rate started dropping. It quickly went from a healthy 148 bpm to 110, 105, 100, 90......

The nurse saw that and immediately yelled out Joshua's door for help. The doctor was in immediately and I laid him on his bed. By that time, his breathing was labored, and he was extremely dusky in color and he was looking up at me with those beautiful eyes that were screaming at me "Mommy help me!!!" I frantically tried to get the mobile off of his crib to allow the doctor full view of Joshua while she was working on him. She immediately started chest compressions and told me to leave the room.

I stumbled out of the room and made it only about 2 feet out of the door before I fell to my knees and started begging God for mercy. Somehow I knew that this was it. Joshua's sweet life was coming to an end.

The nurses called for the crash cart and a ventilator. People rushed passed me as I kneeled on the floor praying crying out to God. Finally a nurse came and got me and took me to the quiet room. She sat and talked to me for  a minute, quickly explained everything that was going on, and promised that she would come back and keep me updated. She told me that they had already given Joshua 1 shot of epinephrin (totally butchered that spelling.) and that his heart was beating with the help of chest compressions. She told me to call Shane and that she would be right back.

I called Shane and told him what was going on. I called my mom. I texted facebook and blogger to get people praying. I did the only things that I could do- spread the word so that prayers could be going up. As I talked to Shane, I told him that I felt like we were going to have to choose when enough was enough. He told me I was wrong, but I knew. I knew this was the end. (Thankfully, we never had to make that choice, Joshua made it for us.)

The nurse came back in and told me they were still working on him. They were still doing chest compressions, and that things weren't looking good. He was hooked up to the vent. They had given him another 6 shots of epinephrin and they had just a tiny pulse. I will never forget the look on that nurse's face. I will never forget the next words that came out of her mouth. She said "Jill, you need to come in and hold your baby."

She led me out of the room and back to Joshua's room. The room was packed with more people than I could count and it looked like a war zone. There were syringes all over the place, machines, wires, boxes, tubes, wrappers everywhere. They pulled up my recliner next to his bed and gently lifted Joshua's limp blue body into my arms as I sat down. I held him, told him I loved him, and prayed for him. I asked Jesus to heal my sweet baby in His arms. They turned off the machines, the vent, the monitors and Joshua was gone at 8:58am.

My precious baby that I had loved and fought for. He was gone. I sat in stunned silence- knowing that I would never see his beautiful eyes look up at me again. I asked the nurses to take the vent out of his mouth and to disconnect the tubes and wires. I asked for them to take all of the equipment out of his room. It was just me and him for a few brief seconds.

I knew I had to call Shane. By that time, he was already on his way down. I will never forget our brief conversation. I told him that Joshua was gone. Shane cried out, pleading with God. "NO!!! NO!!! NO!!!!" I told him that I was holding him and that I would hold him until he got there. I told him that I loved him and to please drive safely. The pain was unbearable. If I could carry the pain for him, I would have in a second. Seeing him go through it, and dealing with the pain of Joshua's loss was enough to almost kill me.

By the time I hung up with Shane the chaplain had come in. She asked if I wanted to be alone, and I told her I didn't. The nurses asked if they could call anyone for me and I gave them a few people to call. I sat with my baby, lifeless in my arms, and told him how good God is no matter what. I said it over and over and over. "God is still good sweet Joshua, God is still good." I prayed, I cried, I worshipped, I rocked my sweet baby.

I know this is probably hard for you to read. It's something that I relive every night before I fall asleep. I can't get the images of him dying out of my head. The images and thoughts and feelings are enough to make physically sick.

Writing is so deeply personal and therapeutic for me, and the fact that I am able to write about it speaks volumes about my healing. Thank you for sharing this burden with me and for praying us through this.

Picture by Jill Haskins. Used with permission.

Friday, October 10, 2014


Tomorrow I plan to participate in the Puget Sound Heart Walk. It is an annual event to raise money for research on heart disease and stroke. I will be walking in honor of three amazing people, and I thought it might be cool to share their stories. You can donate here.

I posted about Ethan. What I didn't mention in the previous post was that since Amy wrote Ethan's story, they lost Amy's husband and Ethan's father Dillon to a sudden heart attack. Here is Amy again on losing her rock and best friend.


I will first state the obvious.  I am now the mommy of a FIVE YEAR OLD! Wow!! Ethan turned 5 on Tuesday and he could not be more excited!  Just last night, he had to show me that he didn't need his step stool to wash his hands in the guest bath anymore, "Because I'm 5 now." This morning at school, he said, "Pick me up.  Do I feel heavier? It's because I'm 5!"  I simply cannot believe he is 5.  He's more adorable than ever but I guess I will always mourn the stage of life he's leaving as I look to the one he's currently plowing into.

Where do I start with this other bit of surreal news?  Most of you know by now, but Ethan's dad and my best friend woke up in the arms of Jesus on October 29, 2013.  No, he had not been sick.  No, he hadn't complained of anything (other than some sinus junk).  We were preparing for our surprise trip to Disney World and Give Kids the World in November.  He had started a new job with Daisy Brand (you know, "Do a dollop of Daisy!") in September and was SO excited about us going back to Disney World (evenmoreso because we were keeping it a surprise!).  Sure, he wasn't able to work from home any more but he was getting a good raise and was elated to be able to provide for us to do more things.  He was always wanting more for us.  That's just who he was!

Anyway, the night of the 28th, we ate dinner and he took his usual 2 mile walk.  He went earlier than usual so I decided to put E down early so that Dillon and I could spend some quality time together because I knew that he was trying to get in bed earlier to catch up on some sleep.  I put E to bed while Dillon was in the shower and he came out, said, "Where's the critter?" and was pleasantly surprised he was in bed.  We watched some shows and he tried on some new shirts we'd bought for work and we matched up ties to go with them.  He took all the tags off, asked me if I would please wash them while E was in school the next day and if I could also find out if it was ok to wear brown shoes with navy pants.  Ha! Only Dillon.  He said he had been Googling about it but wasn't coming up with anything but he'd noticed some guys at work wearing brown shoes with their navy pants.  I was cracking up.  So funny!!  We talked about Disney and how Ethan was going to do the Jedi Training Academy (and he WAS going to do it, by golly!  Dillon was determined!) and then he said goodnight and went upstairs.  He had been sleeping up there to be closer to E's room, because he now was getting up so early for work and also because he is an aerobic sleeper- all over the place- bed to floor and back to bed and just...yeah.  Crazy!  I hate to say it, but Ethan is JUST like his Daddy!! Ha!!

In the middle of the night, Ethan came and got into bed with me.  Our bathroom door was still open (Dillon always closes it before he leaves for work).  Strange- strange that E was in bed with me and not Dillon b/c, obviously, it was still too early for him to have left.  My alarm went off at 7:50 (Dillon always left by 6am).  The door was still open but I didn't think too much of it.  I got up to get ready to take E to school and Ethan went to the kitchen to get his milk and juice.  He came back in to say, "Mommy, I think Daddy forgot to go to work today."  Sadly, he didn't forget.  He just never woke up.  :-(

My sweet son has had to endure more in his 5 years of life than most kids.  He is a champion and is so amazing.  He is the reason I am still living and breathing today.  When all I want to do is crawl in a hole, he is there, needing a hug, to go to school, play or whatever a 5 year old needs.  So many have said they are amazed by my strength and grace.  My reply?  I do it for him.  It's so hard.  We thought we had everything figured out.  The only question revolved around kindergarten next year.  We were mulling a couple options over (two have now been nullified due to our circumstances) and then also trying to figure out when I would return to work.  We had concluded that, due to the "school schedule" and Dillon no longer working from home, that I would stay home another year until we figured some more things out.  In 9 hours I went from a stay-at-home-mom to Mom and Dad and not quite sure what in the world to do.  God has a strange way of answering prayers....I didn't want this to be the way.  I still don't know what I'm going to do but I can say that the prayers of many are carrying me.  They are carrying us.

Ethan is amazing- I can't say that enough.  If you were at the visitation or on Facebook afterwards, you saw his handiwork as they allowed him to draw on Dillon's casket.  He asked matter-of-fact questions (Death is such a hard subject!) and I did my best (and I'm still trying) to give matter-of-fact answers.  We went to visit Dillon's grave yesterday at his request.  He doesn't ask when Daddy is coming back.  He asks, "When am I going to die?  When are you going to die?"  He knows his Dad is in Heaven.  God has put that peace into his heart, yet the thought of death just won't get out of his head and I hate it.  Last night, though- listen to the maturity in my sweet son:

"Mommy, are we going to die tonight?"

"Sweetie, if we die, where will we go?"


"Yes, and who is in Heaven?"


"Yes.  We will be with Daddy.  We will be happy again."

*he thinks a minute and gets teary again*

"Mommy, when you die, I'm going to call people."

"Um. Ok?"

"No, Mommy.  How do I call the people like you called for Daddy." (911)

"Oh, Ethan.  Let me show you.  What a brave and smart thing to want to know."

We then had a little instruction time on how to use the house phone and when it was appropriate to call for help.  Oh my goodness, y'all.  He is wise beyond his years and I couldn't be more proud of him.  What 5 year old has to spend his birthday at a holiday memorial service?  That kid.  That kid who was all, "Ok. Whatevs. Where are the cookies and how many can I get away with eating?"  Yeah.  He's a rock star.

I just want to thank each and every one of you who have offered prayers, food, money, love, and anything I have needed in this past month.  Yes, we did take our Disney trip, by the way.  It was November 11-19, much like last year. My oldest sister was able to stay and go with us and we wore her out (Dillon was planning on us going full-force and we did our best to honor that crazy man).  Ethan defeated Darth Vader and met all the characters he wanted to meet, he was sprinkled with some sweet Pixie Dust the first night we were there (poor Cast Members were always commenting on the button I was wearing "Celebrating Dillon" or the picture of Dillon we laminated and brought with us).  Ethan was treated to longer meet and greets with a few of his favorites and VIP seating for the Christmas Parade as well as s sweet stuffed Mickey from one of the extremely thoughtful CMs named Mark.  Another named Ben brought us cookies and hot chocolate while we waited for the parade.  For that night, it was nice to have people stop and honor a little boy who had lost so much.  It helped this mama's heart because all I wanted to do was stop and scream, "He lost his father!! Give him the world!" Ethan had a fantastic time.  FANTASTIC! Of course, memories from last year and what should have been flooded my heart a lot of the time but I was able to smile and watch the magic of Disney through my precious boy's eyes again and it was awesome.

The outreach from those around us has been nothing short of wonderful.  This weekend, barring any crazy ice storms that are predicted, Ethan will have his first "big" birthday party at Chuck E. Cheese.  Icing Smiles is providing the cake, another awesome friend is footing the bill for the party and another took the time to put together goody bags for his guests.  I have another friend who has made cookies for me to take to Ethan's class today- not just any cookies, but star shaped ones with LIGHT SABERS on them!

I love each and every one of you.  Please continue to pray for us. Know that your prayers are powerful and are sustaining us.  It's really really hard.  It was always the 3 of us (and Giggs).  We were a team.  I miss him SO much and being in this house without him hurts.  I'd give anything to have him back.  Anything.  One thing that is of comfort is, he didn't suffer. He simply went to sleep and awoke in the arms of Jesus and I have to say, what an amazing way to go.  It could have been while driving to or from work or driving E to soccer or.... God's mercy is good though I don't begin to understand why He had to take Dillon away from us so soon.  He was my rock, my provider, my best friend.  He was the BEST daddy in the world to Ethan.  He loved him SO much.  The awesome thing is, we both know how much he loved us.  I know there are some who aren't as fortunate.

Love fiercely.  Make sure you have a plan for the unthinkable (we didn't).  Keep up with your checkups (Dillon had only just begun in the past few years and having his heart checked was next on his list).  Make your moments count.

We love you,

Amy and Ethan

Picture by Amy Durham. Used with permission.


Tomorrow I plan to participate in the Puget Sound Heart Walk. It is an annual event to raise money for research on heart disease and stroke. I will be walking in honor of three amazing people, and I thought it might be cool to share their stories. You can donate here.

I could tell you Ethan's story, but his mom puts it so much better. Here is Amy with the story of her precious son (used with permission).


Ethan Kyle Durham was born on December 3, 2008 at 5:21 PM, weighing in at 7 lbs 10 oz and stretching out to 20 inches long.  After worrying for the past 39 weeks, we finally had our son and he was PERFECT!! The ride to that point was a bit bumpy and my induction ended up being a C-section but, even that was just a part of God's amazing plan. Unfortunately, I got sick and our hospital stay was extended.  That proved to be a big blessing as did the spur-of-the-moment pediatrician decision as I was undergoing my 2nd epidural.  Dillon and I couldn't remember the name of the one we had previously selected!  A nurse in the room and my OB both suggested someone and we went with that.

The day Ethan and I were to be released, our (yes, he is now OURS) pediatrician thought he heard a murmur in Ethan's heart.  Well, that prompted an echocardiogram and then eventual diagnosis of a condition called TGA or Transposition of the Great Arteries.  This defect (the aorta and pulmonary artery are on the wrong sides of the heart and have to be switched back) is life-threatening and, if we had taken Ethan home, who knows what might have happened!!

While it was rough to realize our baby boy would need open heart surgery, it is amazing to see how God saw us through to that point. Most defects of this nature are detected prior to the birth of the child (most as early as 20 weeks) but, since none of my doctors were looking for a defect (after all, he was born with all 4 chambers of his heart), it sort of slipped under the radar, even after having a level 2 sonogram done by a Perinatologist near the end of my pregnancy.

Most babies show signs at birth (like turning blue) but Ethan looked perfect because he had a few OTHER defects: holes in his heart (VSD &ASD) and his Ductus Arteriosus (allows blood to mix while in the womb) remained open (PDA). This ended up being another blessing because they acted as a bypass and kept his blood mixing (as a normal heart would do) which kept him in good shape until he could be operated on. Is God good or what?

Ethan had his surgery on December 12th, 2008 at Medical City Dallas Children's Hospital. Dr. Eric Mendeloff performed it and everything went off without a hitch. It is totally amazing how surgeons like him can operate on such delicate organs. There were parts of the surgery that were very critical but prayers held us all up and Ethan came through it like a champ. They had to leave his chest open because of precautionary reasons (swelling) and he was able to have that closed up on the 15th.  After a 4 week stay in the hospital, we were finally able to take our baby boy home!
So far, Ethan’s only setback has been some scar tissue buildup in the pulmonary artery and valve which was surgically addressed 4/15/09 by Dr. Mendeloff.   Because the pulmonary valve had to be patched, he will require another surgery to replace it (hopefully) years down the road.  He's also making his own growth chart, having struggled with feeding issues early on but he's hitting all his milestones and is full of "normal big boy" mischief!

Even though this "one-and-done" surgery ended up not being so, we are thankful for how far we've come, how strong our little man is, and how God has provided for us along the way.

Picture by Amy Durham. Used with permission.