yesterday

Yesterday I had to go back to work.Yesterday also just so happened to be the day Owen would have turned three months old. Before he was born, I was excited about this day. My maternity leave would end right before summer, so I would only have to leave Owen for just a couple of days. It was the perfect time to have a baby. I dreamed about this day before he was born. I wanted to be able to bring Owen to work to introduce him to my friends there. I wanted to pass him around for people to hold. I wanted to talk about how much fun it is to be a mom and have a baby.

It's kind of crazy how much I thought about and anticipated during my pregnancy... I think it's only natural. I tried not to have expectations about what motherhood would be like because that typically sets you up for disappointment, but I really was excited. I was excited to have a baby. My baby. I didn't have unrealistic expectations, but during the second half of my pregnancy when miscarriage is less common, I never considered the possibility of my baby being sick after birth and dying. I pictured Owen in every single part of my life which is part of why it's so sad now. He's not here. I wanted him before he was born, and I still want him so badly.

I had so much anxiety about yesterday before it happened. I have mentioned before that my home is a safe place for me. Every time I leave my house it becomes "unsafe." On these harder days, I really need to be in my safe place. But yesterday, I didn't have a choice. I had to go back to work. Thank goodness it was a teacher workday. Seeing my students would have been wonderful because I missed them, but it would have been way too hard to talk about my sad news with them. They were excited about Owen. I had a group of sixth grade boys who asked me every week how big the baby was... When I started to get really big around 32 weeks, one of them said, "Ms. Parker! When I was in the lunch room, I saw your baby!" I laughed and asked him what the baby looked like. They were so precious.

Kristin and I talked through the day before it happened several times. We would walk in together, and she wouldn't leave me until I was "okay." So that's what we did. Even pulling into the school parking lot for the first time was hard. The last time I was in that parking lot, Owen was alive. I was nine months pregnant, and he was safe inside my belly. I got out of the car, and walked into the school with Kristin. We passed by the cafeteria first, so I decided to go say hello to my favorite lunch ladies, Delores, Jane, and Evie. I saw these women everyday, and they were all so supportive during my pregnancy. When I saw them and hugged them, I lost it. I just started to cry and couldn't really stop. They were so sweet and encouraging. I wanted to stay longer and talk to them, but I needed to pull myself together. It was just the beginning of the day, and I needed to not be a complete mess.

The day got easier as it went on. It was great to see everyone again. My school has been so supportive during Owen's sickness and after he died. I feel so blessed to work there. Every time I turned a corner, someone new was there to give me a hug and chat with. Ms. Long, our school nurse is an amazing and spiritual woman. She pulled me aside, gave me a huge hug and started to basically preach a sermon right there in the hallway. I wish I could remember everything she said. She told me that God chose Brian and I to be Owen's parents for a reason and that we are going to be blessed. She told me that we have hope! But we also have sorrow. And God is right there, holding bottles to collect our tears. She laughed and said that God has some pretty big bottles for her tears. I just cried as as I listened to her beautiful wisdom.

The day wasn't only filled with tears and hugs. There was lots of laughter, just like old times. It was so great to catch up with everyone and hear about what I had missed in the last three months. There were moments when it felt like nothing had happened at all. Everything seemed normal, but it wasn't. I guess it's my new normal. My anxiety went away as the day continued... I was emotionally drained by the end, but I realized that my school is also a safe place with safe people. So many of these people feel like family. It makes it even harder to say goodbye, knowing that I have decided not to come back for the next school year. I need a fresh start. Our school is splitting next year, and with everything that I have gone through in the last few months, it seems like the right time to move on.

Owen would have been three months old yesterday. When I look at pictures of other babies who are three months old, I can't help but to imagine what Owen would look like now. I wonder what size clothes he would wear and if his hair would be thicker and what his cry would sound like and what his favorite activity would be. It's hard to believe that he has been gone for as long as he was alive. I hate that it's been six weeks since I held his hand or rubbed his head or kissed his soft face. And it's just going to get worse... Every passing day is a day longer that I haven't been able to do those things. But each passing day is a day closer until I get to see him again.

We are trying to figure out how not to move on, but to move forward. A big part of me wants time to speed up. I want to be at the next phase of life. I have no idea what that phase looks like, but I imagine it not being so painful. In the meantime, I am trying to allow God to fill the emptiness in my heart, and to soak up every single little thing he wants to teach me. Owen's life was not a waste, and I am determined to gain as much from it as I possibly can.

the story of the arrow

One thing that Brian and I agree on easily is names. Some couples battle it out and take months to finally agree on what to name their child. Not us. We have had names picked out for years. Owen was our top boy name, so when we found out we were having a boy, there really wasn't much of a discussion. We just knew. But naming a person is hard! It's a lot of pressure. I decided we needed to make a final decision because I wanted to paint letters to hang on his wall. And clearly, that's a big deal. But for some reason, we couldn't really call him Owen until he was born. We had to make sure he really was an Owen first. We told people his name, but made sure they knew it could be changed at the last minute if it didn't feel right. But when we saw him, we knew he was definitely an Owen. 

I remember googling the meaning of Owen just to make sure it didn't have some horrible meaning. When I read that it means "strong warrior" I had no idea how significant that would become in his life. 

Most of you know that I make and sell custom onesies. I have sold a ton of them on etsy and have given lots as gifts. When I was five months pregnant, I decided to make an original onesie for Owen... I wanted him to have a special one no other baby had. I had just gotten some new cute fabric that reminded me of arrows, so that's what I made. I only made this one for him because I wanted to meet him first. I needed to know his little personality! 

On Owen's second night at Egleston, Ginger, one of the night nurses, made him this sign. She wasn't Owen's nurse that night, but she still made it, and he drew an arrow on it! She had no idea about the onesie I had made him. No other babies in the unit had an arrow on their signs, just Owen.

The next morning I remembered the meaning of Owen's name and how significant it was in his life already. I also realized how appropriate an arrow was for the meaning of his name. At just a few days old, he already was a strong warrior. 

The arrow really became the symbol that represented Owen. Friends and family showed their support during his life by taking pictures holding Team Owen signs with arrows on them and posted them on facebook. We had them all hanging on the wall next to his bed, and people at the hospital would come by and comment on how many fans he had. Team Owen tee shirts were made with arrows on them to raise money for his medical bills. Arrows were popping up all over the place. Every day, we told Owen how strong and how brave he was. We told him he was a warrior and a fighter. 

After he died I received several pieces of jewelry with arrows on them. One bracelet came with a card that quoted Proverbs 35:6. "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him, and he will make your paths straight." After the verse, the card said, "Like an arrow, straight and true, God guides our lives. Submit yourself to the one who knows where each path leads."  We included this on the program at his funeral. 

During Owen's life, I didn't know where God was going to lead his path. I didn't know if he was going to allow him to live for hours, days, weeks, months, or years. I wrestled with the fact that by trusting God fully, I had to accept the fact that he may choose to take Owen from me. I didn't want to pray for God's will to be done. I wanted to pray for Owen's body to be healed and for him to live a long healthy life. I can't tell you how painful it was to be faced with the possibility of my newborn baby dying. I knew that God's ways may not be my ways. 

It was an hourly struggle for me... to trust God knowing that He might allow my worst fear to come true. It was gut wrenching. The fact that I had no control over anything was completely thrown in my face minute by minute as I watched my precious baby literally fight for his life, knowing there was nothing I could do to help. 

I felt helpless, but not hopeless.  

I trusted God, but I also prayed boldly for a miracle. We all asked for a miracle. God chose to heal Owen's body in heaven. And yet, we are still trusting... In Holding On To Hope, Nancy Guthrie writes:  

"Trusting God when the miracle does not come, when urgent prayer gets no answer, when there is only darkness-- this is the kind of faith God values perhaps most of all. This is the kind of faith that can be developed and displayed only in the midst of difficult circumstances. This is the kind of faith that cannot be shaken because it is the result of having been shaken."

This is such an encouragement to me. The reality is that I'm sad. Most things are just hard. Everything takes so much energy. I'm living many hours of my days in darkness, but knowing that my faith cannot be shaken anymore than it already has been is a comfort. I am trying so hard to trust God in the midst of my worst nightmare. My discomfort and moments of darkness have awakened me from my routine and remind me that I am not in control. I can be angry at God about my circumstances, or I can draw closer to Him.

On a walk with my friend Kristin last week, we noticed stones on the ground in the shape of an arrow, and we thought of Owen. I see arrows everywhere and they make me smile. Just as I was working on this blog post, I received a package at my door with this framed print inside. It's not a coincidence. It's God's work in everything, even the little things. 

Not only do arrows remind me of Owen, but they remind me that God is loving and that he has a purpose for Owen's life and for our suffering. I have come to terms with the fact that I will never know why all of this happened until I get to heaven. In Holding On To Hope, Nancy Guthrie encourages us to stop asking God "Why"?" but instead "For what purpose?" She challenges us to "look beyond this life and embrace the Redeemer, who will take the pieces of your life and transform them into something beautiful if you invite him to do so." 

eternity

Mother's Day weekend was hard. It was a harsh reminder that I was supposed to be a mom. I am a mom. Owen made me one, and no other person will ever be able to do that. But it's completely different. My reality is that my baby died. Saying those words isn't getting any easier. People say that time will heal, but I'm not convinced... When does it get easier? I can't imagine anything ever hurting as bad as this. Knowing that the pain will never stop is difficult. I will never stop missing him.

I find that doing new things (or things for the first time since having Owen) are really hard. Going for a jog was hard at first... I should be using my jogging stroller. Running errands is hard. I feel like I'm surrounded by moms with baby boys whenever I go out. Last week I went to visit my parents for a few days in Florida. Flying on a plane was hard. I thought that the next time I would be on a plane, I would have a baby with me. Going to the beach for the first time was really hard. I pictured holding Owen close, feeling the ocean breeze, seeing him in his cute bathing suit, and taking a million pictures of his first beach trip. Eating at restaurants surrounded by families, grocery shopping, you name it. It's all hard.

Brian and I spent Mother's Day weekend in the mountains for a little get away. We stayed at a cute bed & breakfast in Asheville. While sitting on the front porch for cocktail hour, visiting with other couples, we were asked if we had any children. It caught me off guard, and I answered "no." I felt sick to my stomach saying it out loud. It just wasn't the time to go into it. These other couples were celebrating honeymoons and anniversaries. We didn't want to dampen the mood. We seemed happy and normal on the outside, but we were hurting so badly on the inside. It made me realize for the first time that this simple and frequently asked question will forever be a painful one.

We spent several hours on Sunday at the spa. The perfect way to try to relax... When I went in for my massage, the massage therapist asked if I had been pregnant in the past year. I told her I had a baby in February. I started to say, "he..." but I stopped. I wasn't going into it with her. She asked if I was nursing, and I said no. I felt instantly judged. She asked if I had a boy or a girl, and I said a boy. She then said, "Aren't little boys the best? I just love my son..." I fought back tears, smiled, and agreed. Thank goodness the questions stopped after that. She then gave me a mimosa and a rose in celebration of Mother's Day. I was flooded with so many mixed emotions. I was glad to be recognized as a mother, and I feel so honored to be Owen's mom, but I'm also filled with such sadness.

When asked what the occasion was for our trip, we said it was just a little getaway... That was partly true. But the other part was that we were there to finally spread Owen's ashes. On our drive up, to NC, I turned around to grab something out of my purse and noticed his ashes in the back. I had a quick moment where I felt like I couldn't breathe out of disbelief because of what were were about to do. I wanted so badly for Owen to be riding in his car seat, looking out the window, on his way to the mountains for the first time for a fun little trip as a family of three.

When Owen died, we knew we didn't want his body buried in some random cemetery in Atlanta that had no meaning to us. We aren't from Georgia, and we don't really have any ties here. It is our home for now, and it is special because this is where Owen lived, but burying him here didn't feel right. When Brian suggested spreading his ashes on top of Bald Mountain, I knew that was what we should do. His family has had a cabin on the mountain for years, and he grew up going to the Bald as a child. His grandfather's ashes were spread there, and it's a special place to both of us We have many memories visiting over the years. Even though it felt right, it was something I was completely dreading... I can't even begin to tell you how emotional it was. It was like he had died all over again. It felt so final.

It was a beautiful day though. I imagined Owen looking down from heaven at us with his big eyes and dimple chin, smiling.

This is yet another place where we will be reminded of Owen. Hiking up to the Bald has a whole new meaning to us now.
Owen has made me realize how comfortable I've been in my life this side of heaven. I have experienced pain, loss, and disappointment, but nothing to this effect. Not only was I comfortable here, but when I thought of heaven, it gave me great anxiety. The concept of "forever" was too much for me to comprehend. Heaven has become a much more real place now that Owen is there. I long for it. I long for my heartache and emptiness to go away. And I know it will when I get there. I relate so much to what Nancy Guthrie writes in her book Holding On To Hope: "I have come to the place where I believe a yearning for heaven is one of the purposes and one of the privileges of suffering and of losing someone you love. I never had that yearning, before, but I do now. You see, a piece of me is there... I now see in a much fuller way that this life is just a shadow of our real life-- of eternal life in the presence of God."

Owen's Story: Part Six

...continued from Parts One, Two, Three, Four, & Five

Our drive home that night was strange. The last time we had driven on the interstate was one of the most exciting drives of our lives. We were going to meet our baby boy that day. This drive home was one of of the hardest. Did all of that really happen? Did we really just spend six weeks in a hospital? Did Owen really just die?

It feels like Brian and I aged twenty years in those six weeks. We are different people now. We didn't want to be those people who lost their newborn baby, but we are.

Coming home and seeing Toby again was comforting. He was so happy to see us- it had been so long! It was emotional being home. We left our house before with Owen in my belly, and now he wasn't with us. I sat in his nursery because I felt closer to him in there. It was all ready for him. We had everything we needed, but we didn't have him. Brian and I were just so sad. I cried myself to sleep that night. 

The next morning, I had a hard time getting out of bed. It was easier to just sleep... I let myself just lay there for a long time. I was numb. I had no desire to do anything. It felt so strange not to rush out in a hurry to get to Owen. That had been my life for the last six weeks. But that life was now over. I didn't have an appetite. I had to force myself just to drink water. People kept telling me I needed to eat. They told me that at the hospital too. I knew they meant well, but it really made me angry. I could only do so much. 

We had to plan his funeral. How in the world do you go about doing such a thing? How do you make decisions when your heart is torn in two and you can't think clearly? Our parents, my sister and Brian's sister really helped make everything happen. We wanted Owen's funeral to be personal, and a celebration of his life, and it was just that.

We printed pictures to display with some of his favorite things. All of his beads that he got in the hospital were there too. He had so many.

Mr. Frog, his crotched hearts, and his favorite books.

Our favorite verse which hung on his crib while we were at Egleston.

 

Natalie and Joy Lynne read testimonies from people who commented on Owen's caring bridge site. My uncle Vann preached a powerful message on hope. He included an incredible testimony that was posted online by someone we've never even met. It was beautiful.

"I would not have thought that I, an almost 70 year old man, could learn anything from an infant child. I would not have thought that an infant child could have opened my eyes so wide that I could see the glory of God so vividly. I would never have believed that an infant child could show me what it truly meant to have an intimate relationship with Jesus Christ.

Some of you know that over the past several weeks, thanks to sister Tami Dillard, I along with literally hundreds of others, have been praying for an infant child who since birth (six weeks) has been fighting an incredible race for his life. The group called "Team Owen" have for the most part been praying for this child whose name is Owen Parker along with his parents. As always in these situations we pray for God to give us a miracle and heal the person giving them a full life here on earth as well as comfort for them and their parents. Well I have to report that late last night my brother in Christ finally yielded to our Heavenly Fathers' will and passed to be with the Heavenly saints. Owen is totally well now and will be for eternity.

I never personally met Owen nor do I know his parents. I never met but only a couple of the people on Team Owen. However I can tell you that I have never felt so close to anyone or anybody than I have over the past few weeks than Owen. I have never felt such a camaraderie with a group of people as Team Owen. What did I learn. Through Owen my eyes were opened wide to the true love of God. Owen was like a magnet tearing at my heart saying that this is what real love is in the eyes of God. So innocent yet so powerful in its meaning. This child showed me through his trials and tribulation what it truly means to have an "intimate" relationship with someone you have never seen or touched.

My friends, God has used this child to bring literally hundreds of adults closer to Him. He used Owen to bring us all to our knees in humble prayer to God in Heaven asking for a miracle, but all things in accordance to His will. We were asking for the miracle of healing of Owen. But for me, God gave the miracle of Owen Parker for my healing. No I never got to meet Owen, but I got the opportunity to "feel" him in my heart. I now truly know what the Lord meant when he responded to Thomas saying "Because you have seen me, you have believed; blessed are those who have not seen and yet have believed." Thank you Father for using Owen in my life as reawakening as to how it feels to have this intimate relationship with my Lord Jesus. I look forward to meeting Owen in heaven."

God was glorified at Owen's funeral, and Owen's life was honored by many. I felt peace from the Lord that day. When I went to sleep that night, instead of replaying traumatic scenes from the hospital over and over in my mind like I had done before, I remembered his funeral and how much I loved everything about it. It was a happy memory even though it was a sad day.

Owen was so full of life. We couldn't have imagined a more perfect baby than our sweet Owen. He was fearfully and wonderfully made, and God knew the days of his life before any of them came to be. Owen has renewed our faith and taught us to take nothing for granted. He has given us hope. Hope in things eternal. There is a deep ache we feel since our arms are empty. We miss him so much. We never knew we could love someone as much as we love him. It is unfathomable to imagine how much more God loves him and all of us, as we are His children.

On our second day at Egleston, I tearfully told our nurse Amanda that my prayer was that others would draw closer to Christ because of Owen. That people who do not know the Lord will find salvation because of Owen's story. God is already answering that prayer.

I feel so honored to be Owen's mom, and I will never stop telling his story. He will be in my heart forever.

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

Owen's Story: Part Five

...continued from Parts One, Two, Three, & Four

On Sunday, March 23rd, we celebrated Owen's one month birthday a day before his open heart surgery. He wasn't having the greatest day, but he was still somewhat awake and interactive. We cut this onesie down the back so we could slip it on him for a quick picture. The pants were a little difficult to pull over all the lines he had, but we made it work! I loved seeing him dressed. I mean, the pants alone are just precious. He was so handsome!

 I remember praying, "Please God. Please let us see him turn two months. And three. And four... And one year, and twenty years and so on...." Take it four hours at a time.

We passed out cupcakes to people on the floor in celebration. I loved telling people that Owen wanted me to give them a cupcake. He also left candy and chocolate chip cookies at the nurses station with little notes. Maybe that's why he was such a popular little guy. :)

During our first week or so at Egleston, our nurse Amanda told me about these crotched squares they had in the NICU. The moms would sleep with one, and then give it to their babies the next day, so the baby had the mom's smell close to them. We thought it would be sweet to make crotched hearts instead of squares, so that's what I did. I slept with one each night and then gave it to Owen to have the next day. Every night I had one and so did he.

The next day, March 24th was surgery day. We arrived at the hospital at 6 am to spend as much time with him as we could before heading to the OR. He got an EKG before the operation.

Around 7:30 am, the anesthesiologist and his team arrived at Owen's bedside. And then we started the dreaded walk to the operating room. Oh how I hated this walk.  

We kissed him goodbye and told him how much we loved him and that he was going to be just fine. We left teary, and a little scared. We passed Dr. Kanter in the hall and could barely look at him. He could barely look at us. This was serious, and everyone knew it. 

When Brian and I arrived in the waiting room, we both felt a sense of total peace. We knew this was from the Lord and from so many people praying for us that day. We sat in the corner of the waiting room near a window and passed the time by catching up on shows on Hulu and watching Jimmy Fallon. When I started to feel anxious, I flipped through a book of verses and prayers my mom had written down for me to have during his surgery. They were verses and prayers people had written in comments on Owen's caring bridge site. They were such an encouragement to me during that time. Sam, the chaplain came to visit us with her therapy dog, Uno. We loved Uno. He was such a comfort.

Another friend, Lacy and her son Josiah (who was also a heart baby) came to visit. This was our first time meeting in person. It was so wonderful to visit with her and meet Josiah. Susie (our respiratory therapist) was off that day, but had a class at the hospital, so she came early to chat with us too. 

We got calls every hour or so, updating us on what was going on. It was a long day. Around 4:30 pm we got a call saying that they were winding things down and everything had gone well. We got another call soon after saying that when they put the patch over his open chest, there was a lot of bleeding, so Dr. Kanter had to go back in and figure out where the bleeding was coming from. We didn't get another call after that. It was an excruciating hour and a half wait after that last call. Finally, the PA came in and took us back to the consult room to meet with Dr. Kanter. Was he able to come off bypass successfully? Was he on ECMO? Did they stop the bleeding? 

Dr. Kanter told us the procedure went well, and that he stopped the bleeding by adding a few more stitches. Owen's chest was left open (covered by a patch) to help the swelling. We knew this would be the case. He had 2:1 heart block, so he was being paced by a pace maker, but Dr. Kanter said not to worry about that. He said Owen successfully came of the bypass machine and did not have to be put on ECMO. This was huge! We were thrilled with this news, but we knew the next 24-48 hours were critical for his recovery. If he had a hard time recovering from his previous less invasive surgery, chances were he would have a harder time recovering from this one. 

When we saw him, he was awake and doing great. The doctors and nurses were all so happy to see how well he was doing. Seeing their relief in the medical staff made us even more aware of how serious it was. Owen defied the odds just by coming out of surgery alive and not on ECMO. We had a lot to be thankful for. 

Unfortunately, Owen's recovery didn't go as well as we hoped for. His urine output wasn't as much as it needed to be to remove the excess fluid his body was holding on to. He also had developed an infection in his skin from one of the lines that had been in his body for a while. Due to his poor urine output, he was put on CVVH (a form of dialysis). He had a large catheter put in his right leg which caused it to turn dark blue because of venous congestion. 

Even with his chest open, he was awake! People were quite surprised by this. Apparently, it's not the norm, but he was comfortable, so they didn't need to sedate him more than he was already. We continued to read lots of books together. He was still swollen and puffy, but it was starting to go down. One morning after surgery, Dr. Kogan, one of the other surgeons came by to check on him. We examined his open chest and the patch, and he explained things to us. I asked if I could touch his heart and feel it beat, and he said that I could! So I placed my finger gently on Owen's open chest and felt his actual heart beating. Brian felt it too. Not many parents can say they literally touched their baby's heart! 

It's amazing how different he looked after surgery... Over the next few days, his edema went down and he got less puffy. 

Owen's chest needed to be closed. We were told that every day it remained open, it was less likely that he would ever make it out of the CICU. It was serious. Closing his chest seemed just as stressful as his surgery. On April 1st, Dr. Kanter closed Owen's chest. We were told this might be another time when he may need to go on ECMO (if he didn't tolerate the closure). It was a successful closure, and Owen tolerated it really well at first. Right after we got back to his bedside after it was closed, things took a turn for the worst. His blood pressure began to drop significantly, and his chest had to be re-opened. His CO2 levels went up, so they switched him to the oscillator, and he started doing better. 

I stayed with him until 2:30 in the morning. I needed to see that things were more stable before going to bed. It was a busy night for him, but he was doing better than before. His chest was open, he was on a lot of support for his blood pressure (dopamine, epinephrine, and vasopressin), he was still on CVVH, and he was back on the oscillator. At least he wasn't on ECMO. 

We got a call early in the morning (around 4 am) telling us that things weren't going well. His blood pressure had dropped again, and he wasn't responding to high doses of medications. We needed to come in. They were getting ready to put him on ECMO. The hope was that by going on ECMO, his heart and lungs would be able to rest for a few days, and then be strong enough for his chest closure. This was not the news we wanted to hear. It felt like so many steps in the wrong direction. Things just kept getting worse and worse after that. He started having a lot of bleeding through the patch over his open chest, so Dr. Kanter had to go in and clean it up. And then he had bleeding in his abdomen, so Dr. Kanter had to go in once again, but he couldn't see where it was coming from. The general surgeon was consulted and on standby in case the abdominal bleeding didn't stop. Thankfully, it did. 

On Thursday April 3rd, Dr. Raviele told us that Owen's chances of living were not good, and that we needed to be prepared for the worst. He was very straight forward with us as he had to be, but it was heart felt. He was with Owen from the very beginning at Northside. I had developed an attachment to Dr. Raviele that I didn't feel with any of the other attending physicians. He was almost like a father figure, and I knew he cared a tremendous amount for not just Owen, but for us too. I could go on and on about this man, but I won't. Just know that if someone had to tell us that news, I wanted it to be him. 

Still, we did not give up on Owen. We kept praying for God to heal his body. We had several conversations with doctors and staff about the fact that we were still doing things for Owen, not to him. We were still providing him with the best medical care and fighting with everything we could to help him survive. The doctors assured us that if we got to the point where we were doing things to him, they would let us know. We weren't there yet. 

Susie (the respiratory therapist) gave Owen this book, and we read it every day. It was so fitting for him. I cried many times while reading it, but I made sure to make all of the train noises... This was the last book I read to him.

Owen's days on ECMO were my darkest days. If you are new to our story and want to read specifics, feel free to do so here. But right now, I can't relive it. The days were so hard. So hard. I was still pumping breast milk for him, hoping that one day he would get to use it. Every time I handed it to the nurses to freeze, I wondered what they thought. Did they think I was ridiculous for still pumping? Did they think it was stupid of me because my baby was going to die? I know some of our nurses read this blog, and I want them to know that I NEVER felt judgment from any of them. This was all in my head, but I was in a dark place. I felt like we were slowly watching Owen slip away from us hour by hour. Seeing him look that sick was unbearable. When I think of Owen now, that's not the baby I picture. I picture him looking healthy and strong. 

We celebrated his six week birthday on April 6th. My sister-in-law made this cute card for him. 

April 7th was the day. The day for Owen to come off of ECMO. It was time. The whole day was so hard. He was declining, and we were preparing for the worst. My uncle Vann is a pastor and was at the hospital that day. He had seen Owen several times before and came into pray for him before surgery. I asked him to come in and pray for Owen that day, dedicating him to the Lord. Both sets of grandparents came back, and Vann prayed a beautiful prayer. It was so very emotional.

We were scared. But even at this point, I couldn't give up. I refused to give up on my baby if there was still a chance. We were still praying for a miracle. Susie was with us that day and insisted that I hold Owen. Amanda did too. I wanted to, but I didn't want to risk his chances of coming off of ECMO successfully. They assured me that they do this all the time, and that it would be just fine. So I did. They turned the screens away so I wouldn't fixate and worry about his numbers. Brian was right beside me. I just held him and told him over and over how much I love him. Over and over and over again. I love you, Owen. Daddy loves you too. You are our favorite baby ever. You're so strong. So brave. So handsome. God loves you so much, and He is here with us right now. I love you. I love you so much. You are my sweet, sweet boy.

Dr. Kanter came by around 7:00 that evening and told us it was time. We knew that if he was unable to come off of ECMO, he would not be put back on. That would be the point where we would be doing things to him instead of for him, which we did not want to do. We were confident that Dr. Kanter would do everything in his power to keep Owen alive. With tears in my eyes, I made him promise he would, and he did. Brian and I waited twenty feet away in the consult room, trying not to listen to what was happening. We listened to music and flipped through pictures of Owen on my phone. We were still praying for a miracle.

Owen's little body just couldn't fight any more. God's plans were not our plans. That night, Owen went to be with Jesus. God chose to heal Owen's body in heaven, not on earth. Brian and I were the ones now with broken hearts. The pain we felt that night was unlike anything. I really can't describe it.

Our dreams for Owen were shattered in a matter of minutes. We would never take our baby home. We would never get to teach him things. We would never hear him say, "I love you mommy and daddy." We would never get to watch him grow up. Our dreams were crushed, but we knew he was completely healed. We knew he was with Jesus. Our minds knew these things, but our hearts ached. They still ache. When we held him all swaddled up that night, we knew it was just his body. His spirit was in heaven. We knew we would get to see him again.

We can't wait for that day.

Thank you, God for sending your Son to die for our sins so that we may have life. Eternal life. Life with no pain or heartache. Thank you for loving Owen perfectly and more than we ever could. Thank you for giving him to us for forty-three days. Thank you for showing yourself to us through him.

I read this today, and it really speaks to my heart.. especially when remembering these last few moments with Owen--

"No matter what is happening in your life now, your story has an amazingly happy ending. Though the way ahead may look dark to you, there is still brilliant everlasting Light at the end of your earth-journey. My finished work on the cross secured this heavenly hope for you, and it is absolutely assured. Moreover, knowing that your story finishes well can fill your present journey with Joy. The more you put your hope in Me, the more My Love-Light shines upon you - brightening your day. Remember that I am with you continually, and I Myself am your Hope!" -- excerpt from Jesus Today by Sarah Young

...continued in Part Six

Owen's Story: Part Four

...continued from parts One, Two, & Three

One day during morning rounds, they were discussing Owen's slow progress. They told us we were in this for the "long haul." Dr. Chanani told us to think of Owen as a 26 week old neonate. Um, hello... I carried this child for 41 weeks and one day! He was NOT a neonate. What he meant by saying that was that we should compare him to a baby that age with the slowness of his progress. We had been at the hospital almost a month already. I had come to terms with staying for much longer.

On March 18th, Owen went back to the cath lab so they could measure pressures and get a true picture of what was going on. Echos give information, but they're not an exact measurement of pressures. Owen wasn't progressing like they had hoped he would, so going to the cath lab would hopefully explain why. It turned out that the pressure in his aortic valve was much higher than what the echos were showing. Many attendings discussed the situation, and they all agreed that the Ross-Konno procedure was the best operation for Owen. We had mixed feelings. We were glad we had a plan, but it was a scary plan. God is in control... God is in control...

Surgery was scheduled for the following Monday, (March 24th). In the mean time, we enjoyed Owen finally being awake and not paralyzed! His muscles were weak, and he didn't move around nearly as much as he did before, but his eyes. Those eyes. When he opened them this time, we knew they were his daddy's. They were huge! The most beautiful eyes I have ever seen.

He was so engaged! We could literally stare at him for hours. Friends would ask me what I did to pass the time or if I had a hobby to do. Owen was my hobby, and I didn't want to pass the time. I wanted time frozen at this moment. But spending hours with Owen like this made the days fly by.

Feeling him squeeze our fingers again was such an amazing feeling. 

We got a few more chances to hold him. Brian held him for the first time since after he was born. 

This was the most awake he was when I held him. We spent almost a full hour together like this just listening to music. I can't tell you how happy my heart was.

We also read tons of books! Some of his favorites were "The Moose and Me", "Lyle, Lyle Crocodile", "Almost An Animal Alphabet", "I Want My Hat Back", "Next Stop Grand Central", "The Bear's Song", "Spoon", "Stuck", "Harry the Dirty Dog", and "Make Way For Ducklings".

The first book I ever read him was "I Want My Hat Back." While we were reading it, I realized it was perfect for him because his hat from Northside from when he was first born got lost when he was air lifted to Egleston. It wasn't with the rest of his stuff. After we finished the book, I told Owen that we really DID want his hat back! 

When I read pages on the left side, he looked at pictures on that side of the book. And then when I read pages on the right side, he looked at those pictures. And then when I stopped reading, he would look up at me. He amazed me. Oh I loved this so much. So much. 

Since the only clothing he could wear was socks and booties, I brought some of his shoes in too.. they were way too big, but still adorable. 

This was one of his best days. I got to hold him twice. Once in the morning, and once that night. I unswaddled him so I could hold his little hands and rub his arm. 

He loved to watch what was going on. When his nurse and respiratory therapist would come over, he would follow their eyes with his. And look at his chin! Oh I just love it. 

He started sucking on his tube. It was adorable. I guess he thought, "Well, if this is how it's gonna be with this thing in my mouth, I may as well enjoy it!" He cracked me up with his mouth closed, just hanging out, sucking on that tube...

We fell more and more in love with him every day. He was perfect, and we were so proud. It was so fun watching his personality shine in the midst of so many not so fun things happening. 

Apparently we developed a reputation for being the parents who never left the hospital. Several doctors and nurses told us we needed to take a break. The only time I as okay with leaving was when we had to. From 6:45-7:45 pm every night, shift change happened, and we were not allowed to be in the unit. We eventually started to actually leave the hospital for dinner sometimes, and that was as much of a break as I wanted. I considered it a gift that we were able to be with Owen so much. Many babies on our floor had parents with other children or parents who couldn't take time off of work and couldn't be there as much. We were very thankful we could. 

Brian created his "office" beside Owen's bed by pulling the curtain half way closed. I hated the curtain being closed because we didn't have a window, and the windows across the hall were our only source of natural light. When you sit in a hospital for 15-18 hours a day, you NEED natural light. Sherry, one of the secretaries, joked with Brian about not disturbing him because he was in his "office." She asked him how she would know if he was available, and he told her to ruffle the curtain. So she would walk by occasionally and ruffle the curtain, and Brian would lean out and ask her what she needed. It was a running joke they had...

I loved making friends with the nurses. It was so nice to have a normal conversation about what was happening on The Bachelor, or running, or decorating, or sharing pictures of our dogs. I really felt close to them during this time. I can literally name about fifty people that I loved getting to know and chat with. They were my friends, and some of them still are.

Owen got lots of cards and packages during his time at the hospital. I told him every day how popular he was, and how he had hundreds of friends waiting to meet him when he got better. I told him about the life we would have together when he came home. I told him I would carry him everywhere and never put him down. I told him he could cry all he wanted, and I would never complain. I told him we would use wipes out of a wipe warmer since he hated them being cold. I told him we would go on lots of walks and runs in his stroller since he had never been outside. I told him he had a big brother (dog) named Toby who couldn't wait to meet him. I told him he was my most favorite baby in the whole world. I told him so many things... 

I hated when the surgical people would come by. Seeing those blue scrubs, masks, and scrub caps made me feel completely sick to my stomach. The people themselves were great, but every time they came by, I was reminded that Owen was about to have an enormous surgery. Signing consent for the Ross-Konno procedure was one of the hardest things we ever had to do. We knew that without it, he would not survive, but we knew all the risks that were involved. It was horrible. 

Dr. Kanter came by the night before his surgery to check on him. We were chatting in a friendly manner, even joking here and there. All of a sudden he got really serious and said, "You do realize this is an incredibly risky surgery and there is a chance he may not survive." My heart sank into my stomach. Yes I knew that. Yes I knew that these could be my final hours with Owen, but for my own sanity, I had to live in the moment. "Take it four hours at a time. Four hours at a time." I needed to enjoy Owen and not worry about how much time I had left with him. Brian and I tried so hard to remain grounded through all of this. We tried to be realistic, but hopeful. We had to be. I knew God could was able to do anything. He was able to perform a miracle and allow Owen to live a long, healthy life, and that's what I prayed for. That's what thousands of people prayed for. A miracle for our precious Owen. 

Continued in Part Five...

Owen's Story: Part Three

continued from Parts One & Two

We met with Owen's surgeon, Dr. Kanter and discussed the coarctation repair. It was surgery, and all surgeries are serious, but it wasn't open heart surgery. It was an easier, less invasive operation. We felt good after talking to Dr. Kanter. When we were asked to sign consent for the operation, we were nervous and scared, but yet at peace.

On March 4, when Owen was nine days old, he went to the operating room for the first time. Owen was Dr. Kanter's second case that day. It was a really emotional day waiting for surgery to begin. At one point, it was even cancelled because of an emergency, but then it was back on. We walked with Owen to the waiting area before the operating room. I hated that room. It was so scary and sad saying goodbye to him, but he was so brave!

We were told that surgery would take about four hours, start to finish, and that we would be getting calls with updates every hour. Every update we got was good, but in the last two hours, we didn't get a call. We sat nervously waiting for that phone to ring in the OR waiting room. Why weren't they calling us? This was the worst part. Finally, Dr. Kanter's nurse came back and took us to the consult room. Everything went well for this specific repair. We were reminded that Owen had a lot of other issues going on, but this surgery was successful.

You can see how swollen he was again after surgery. Poor little guy. So brave and so strong.

His strand of beads began to grow quickly...

He had a large incision through his left side (around his ribs) that we were told was more painful than chest incisions. Recovering from surgery is hard for an infant, and Owen had a difficult time. He had problems with urine output (which is really important to get excess fluid off), so he was on lasix and diuril. He also had respiratory problems, so they had to switch him to the oscillator, which is a different type of ventilator. This machine was huge, loud, and scary looking. It made little fast puffs of air instead of long slow breaths. It was safer for his lungs. He had to be medically paralyzed in order to be on the oscillator, and his little body shook from all of the constant puffs of air. It wasn't very fun, and Owen was no longer alert and interactive. They also had to keep the bright fluorescent lights on in his bed space when he was on the oscillator so they could monitor his "wiggle". He needed good wiggle (movement up and down in his chest from the puffs of air) which meant that he was getting good ventilation.

This is what his bed space looked like. So many machines. So many medications. And that giant box fan to keep him cold, per Dr. Kanter's request. When he got too warm, his heart rate spiked. 

Even while on the oscillator, he still got to have tummy time. He loved being on his belly. I loved rubbing the back of his head and his back when he was on his belly. It was one of my favorite things. 

He also loved his owl lovie.

The nurses used beanie babies as props in his bed to help position him comfortably and keep wires from pressing into his skin. I just love the back of his head.

It took everything in me not to touch his feet. He hated it. I only touched them a few times... :)

This pose cracks me up.

We celebrated his two week old birthday by hanging a little banner on his bed. Our family made lots of treats to share with the hospital staff on these special celebration days. And even on normal days. Every day was special and a gift. 

The plan each day for the next couple of weeks was to let him recover and wait it out, hoping that this would be enough for him to go home before another bigger surgery. These days were long and tiring. We spent all day, every day fixating on numbers on the screens. We quickly learned what everything meant. Brian and I were a great team. We focused on different aspects of Owen's treatment, and asked different questions, all of which were important. We were parenting Owen in a way we never thought we would. Our only concern was him. 

He had good hours and bad hours. Notice I say hours instead of days because things could change so quickly. One thing we learned was that good things happen slowly, but bad things happen quickly. Every night, we left the hospital feeling emotionally exhausted. If he had had a good few hours, we were scared to feel excited because we knew the bad hours would come. And then it all started over the next day. It felt like Ground Hog's Day every day. I began to learn the schedules of the nurses, respiratory therapists, and doctors, and I knew who to expect on certain days. I am not a patient person, but I had no choice in this situation. I remember thinking, "God, please teach me what you want to teach me so this can be over and we can go home!" That's not how God works, and I knew that.

I specifically remember this night. I was just sad. So sad. Ashley, our night nurse, was so sweet to just let me sit there and cry. And that's what I did. I just cried and cried and cried. I didn't care who saw me. I had held it together pretty well for the last few days, but my emotions had started to catch up with me. I needed to let them out. 

When Owen was twenty-two days old, I arrived at the hospital, teary, just wanting to hold him. He had been paralyzed and sedated (because he was still on the oscillator) for several days, and I felt like I was losing my bond with him. He no longer needed me to keep him calm and happy. It was hard because even though I held his hand or rubbed his head all day, there was no interaction. I needed to hold my baby. I hadn't held him since we were at Northside when he was born. I asked Susie, our respiratory therapist if it was possible to hold him while he was on the oscillator, and she said it was. We had to be very careful, and it took a whole team of people to make it happen, but it was so worth it. My baby was finally back in my arms.

I only held him for only minutes this time, and his body was still shaking from being on the oscillator. It was a little scary, but it brought me so much joy. I remember posting this picture on facebook and caring bridge, and feeling like the whole world was cheering for us. It brought thousands of other people joy also. 

On March 17th, we got several calls in the middle of the night. (This was the beginning of calls in the middle of the night where we received bad news). I think we still have some post traumatic stress when we hear our phones ring at night. It was horrible. On this particular night, we got a call saying that Owen's oxygen saturation levels had decreased significantly, and they had to call Dr. Maher, the attending physician on call to come in and assess the situation. They mentioned the possibility of Owen having to go on ECMO (the heart-lung machine) if they couldn't stabilize him. We did NOT want him on ECMO (full life support). There are so many risks with this machine including blood clots, excess bleeding, stroke, etc. Dr. Maher came in and decided to take him off the oscillator and put him back on the conventional ventilator so that he could be suctioned more frequently. This did the trick. His blood gases improved, and he started doing much better. 

I got to hold him again- this time for longer, and his body wasn't shaking because he was off the oscillator! 

Continued in Part Four...