Sunday, October 12, 2014

Joshua

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.

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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.

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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 out....to talk about it...to 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...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.

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