Owen's Story: Part Two

...continued from Part One

Brian and I rode with my parents to Egleston. It was a silent drive. We were all in shock. Was all of this really happening? Were we responsible enough to be the parents of a baby with a serious heart condition? Just having a healthy baby for the first time is scary enough!

Arriving at Egleston is all a blur now. I remember signing in, getting our hospital bands, and trying to find Owen's "room". He was in bed space 2108. The CICU at Egleston is an open floor. There are curtains you can close if you need privacy, but there are no beds for parents to sleep next to their babies, just rolling chairs to pull up close to the beds. I was overwhelmed with emotions. He was already hooked up to lines and IVs. He looked so small. I just wanted to hold him. But I couldn't.

We were greeted by Dr. George Nicholson, one of the fellows. Dr. Chanani was the attending on Owen's case when he was admitted. George insisted that we call him by his first name, so we did. Looking back now, I realize how blessed we were to have him as our first doctor at Egleston. He was able to explain information so well and with an appropriate amount of emotion. He treated us like real people, and it was obvious that he was heartbroken for us. He really cared. George explained Shone's Complex and what it consisted of. Owen's case was pretty severe, but he was doing great so far. He told us that he was in a "gray zone." He could do really well or really poorly, and only time would tell. 

Owen's problem list consisted of extremely rare conditions. He had Shone's Complex with a parachute mitral valve, unicuspid aortic valve (most people have a tricuspid aortic valve), critical aortic stenosiscoarctation of the aorta, PAPVR, and a very stiff left ventrical. We quickly became familiar with the anatomy of the heart whether we wanted to or not. One of the reassuring things Dr. Chanani told us that night was that Owen was not one of the "sicker" babies on the floor. It gave us a little perspective, but all of this was still a lot to cope with. 

While listening to George and Dr. Chanani, I jotted down the best case scenario for Owen's treatment and what the time frames would look like if everything went well... It helped me to be able to process what was going on with Owen. The plan was to do the least amount of intervention possible so that his body could grow, especially before having surgery. The smaller the baby, the riskier things are. Thank goodness he was an 8 lb baby!

Brian and I asked hundreds of questions, but we were really still in shock. At this point, it had only been 24 hours since he had been born, and here we were sitting int he CICU listening to doctors. I wanted to be holding my baby and nursing him and doing "normal" newborn things. One of the worst parts for me was figuring out how to use the breast pump. One of the nurses at Egleston showed me, and it was horrible. I hated everything about it. Every two hours when I had to pump, I was reminded that I wasn't nursing my baby and holding him. He was sick and there was nothing I could do. I remember feeling guilty. Like I should have known he was sick all along. What did I do during my pregnancy to cause something so horrible to happen? I had to keep reminding myself what Dr. Raviele said when he gave us Owen's diagnosis. "Nothing you did caused this." 

Our whole family was in shock that night. We didn't want to drive back to Lawrenceville, so we got a hotel room that night near the hospital. My mom stayed with Owen overnight which made me feel a little better. She took a ton of pictures and videos of him that night. I'm so thankful. 



 He learned how to hold his paci himself! What a smart little baby.
video
Arriving at the hotel was horrible. As I tried to fall asleep, my body was shaking uncontrollably out of shock, sadness, anxiety, horror, and so many other emotions. I've never experienced anything like this before. Brian had hold me with all his strength to help calm me down and stop the shaking. Between my sadness and crazy postpartum hormones, I couldn't stop crying. It was our worst nightmare. Our whole world was turned completely upside down in a matter of minutes. I had to wake up every two hours to pump, and each time, I was reminded of our nightmare over and over. And then I'd start shaking again.. It was too much. It felt like way too much.

The next morning I woke up sobbing again because I missed Owen so much. I needed to take a shower, and that was more time apart from him. I was so completely swollen in my legs and feet from all the fluid I was given during so many hours of labor, and that also made me cry. It was so hard to think clearly and not be an emotional wreck. So that's what I was. An emotional wreck. Brian was so supportive and understanding. I'm so thankful for him. I'm also thankful for both sets of our parents. They don't live here, but they never left town until things settled down and we felt more comfortable with the situation. They did anything and everything for us. Even if we didn't need anything, just knowing they were around and available was comforting.

We arrived back at Egleston and saw Owen before he went to the cath lab for his balloon aortic valvuloplasty that morning. I was a MESS. We walked him back to the cath lab with the doctors, and I completely lost it saying goodbye to him. I held his blanket in my arms and just sobbed. Looking back now, I realize this procedure was nothing in the grand scheme of things, but he was only two days old, and this was a big deal.

The whole procedure took about two or three hours start to finish. They were able to reduce the gradient from 135 mmHg to 25 mmHg. (Normal pressure is 10 mmHg or less). He came out of the cath lab intubated, and swollen.



Doctors considered his cath procedure a success considering how high the gradient was prior to the valvuloplasty. It was one of the worst cases they had seen. Unfortunately, he developed moderate to severe aortic insufficiency which is where you get regurgitation of blood back through the valve. The plan was to wait and see if it got any better with time. He was treated with milrinone to help his heart relax, and prostaglandin to keep his PDA open. He also had fentanyl for pain and versed for sedation as he needed it. We spent the next several days battling lung issues and proper ventilation. He seemed to take one step forward and five steps backward. 

After spending two nights in a hotel, we were invited to stay with a family who lived a mile away from the hospital. They had an open guestroom, and even though we didn't know them, they invited us to stay with them. We moved out of the hotel and into their house. This family was one of the biggest blessings throughout all of this, and they quickly became very close friends. We had a comfortable bed and we were five minutes away from Owen at night. Brian's company let him work from "home" (the hospital), so he didn't have to take much time off of work at all. He sat with me and Owen all day long working, but he was available if I needed him or if doctors came by to chat. When he needed to step out, one of the grandparents was always there to take his place. Since it was flu season, the hospital limited the number of visitors, so only parents and grandparents were allowed to sit with him.

The next week was when Owen needed us the most. One of the saddest things was seeing him cry and not making a sound because he was intubated. It broke my heart every time. One of my fears was that at night when I wasn't there, he would be crying and the nurse wouldn't hear him and know to comfort him. Both sets of grandparents alternated night shifts so they could be there with him. He really liked to be touched. Except on his feet. He hated that. When he was upset, he was easily comforted by the weight of our arms on his body so that he felt like he was being held. He also loved to be patted on his back and for someone to rub a fingertip gently across his forehead back and forth. I'll never forget his sweet face when I did this. He'd look up at my finger, follow it for a few seconds, and then just fall asleep. I loved his little face, and I loved helping him feel better. 

This is the only picture I have of him crying. It's just the cutest, sweetest cry. I had no idea that he would remain intubated during his entire stay at Egleston, and that I would never hear his sweet voice again. 
On our third day, I walked in and found this sign over his bed made by Ginger, one of the night nurses The arrow was perfect. I'll do another post about the significance of the arrow, but this was one of the ways that God showed me that He cares about the little things. This sign was such a blessing to me.
We bonded tremendously with several nurses and staff at Egleston. It takes a special person to work in this setting. Owen left a little for them...
During Owen's cath procedure, I was flipping through verses my mom had written in a little book in her purse. This one was at the very end of her notebook, after a prayer she had written for Owen before he was born. I tore it out of her notebook and hung it on his crib. It was perfect. 
We tried to make things feel more like home here at the hospital. I hung a picture of his nursery and one of mommy and daddy inside his crib so we were always with him.  
And another picture of us when I was pregnant with him, and then Toby who had heard so much about him. 
We also brought his blankets from home and all of his socks and mittens. I wanted to use anything of his that we could. Every night, I picked out his "sheets" for the next day. A top blanket and a bottom blanket. Since he was intubated, he couldn't wear any clothes. I used my imagination and draped a couple things over him. 

I started to really enjoy these days with Owen. Of course I would have rather been at home with him snuggling in my arms, but this was our life, and I tried so hard to make the most of it. We spent our days holding hands and reading stories. 











He developed a reputation with the staff for being strong willed and stubborn. At rounds, the doctors would ask Brian and I where he got those personality traits from. I took full credit. He also liked to take his time and never seemed to be in a rush. Brian took full credit for that one. We had to really watch his hands with those wires because he would grab them and pull. And with any minor adjustment (ventilator settings, etc.), you had to give him time to adjust. He didn't like big changes. He liked what he liked and let everyone know when he was unhappy. He loved to have his left arm sticking straight up. He also loved Mr. Frog.
We developed a routine and became "comfortable" with the way things were. We were hopeful that Owen could grow bigger and that we'd make it home before having surgery. Every morning we arrived at the hospital at 7:45. We grabbed coffee and went straight up to Owen's bed. We received the report from the nurse about how the night went. They only called us in the middle of the night if something really bad happened, and thankfully during these first few weeks, we didn't get any calls in the middle on the night. Between 9:00 and 11:00 am, doctors made their rounds. This was one of the most stressful and frustrating parts of the day, but we were able to ask any questions we had. During rounds, they reported his history, looked at his most recent chest x-ray (he got one every morning), and discussed what the plan was for the day. It was a good day when the plan was to do nothing. Some of our questions were answered, but most of them weren't. Answers depended on Owen, and he was unpredictable. 

There were a few scary moments in the beginning. When Owen was four days old, he had a lot of fluid in his lungs. It was scary. It was also determined that he would need a coarctation repair (surgery) before going home. We spent the next few days trying to clear his lungs and get him at a better place before going into surgery. 
One morning while Owen was awake, I was on the phone with someone from Blue Cross Blue Shield answering stupid routine postpartum questions. "Do you feel sad often?" Um, my baby is five days old and has a serious heart defect. I feel a little sad. "Do you feel hopeless?" Lady. My baby is in critical condition, but I'm not hopeless. Give me a break. During this conversation, Owen and I were having one of the sweetest moments together. His eyes were open, and he was just listening to me talk. I would lean over to give him kisses on his face in between answering questions, and he'd slowly close his eyes. Every time I stopped kissing him, he opened them, asking for more. So we did this over and over again. When I started talking to him (while still on the phone with Blue Cross Blue Shield) the representative realized I was busy and finally let me go. Owen saved me from that lady and a more extended conversation. I'll never forget this moment with him.


He received beads for various procedures, echos, etc. Each color represented something different. I remember when they handed me his first strand, I thought, "There's no way we'll fill this thing up." Little did I know, we'd fill up four. 
Brian and I decided early on that we needed a bedtime routine. Every night before leaving, we sang "Jesus Loves Me" to Owen and kissed him goodnight. There were nights that Brian had to tell me to stop kissing him so we could get to bed. We usually left around 11:30 at night, sometimes later. It broke my heart every time we left. I would carry the blanket he used during the day and sleep with it at night. It had his smell. Seeing the empty car seat in the car every time we left felt like a knife stabbing me in my gut. I remember thinking, "How long will it be before he can use his car car seat?" Some nights were easier than others, but there were lots where I just cried and cried and cried. I had to leave my baby. I couldn't take care of him the way he needed to be taken care of . I had to rely on strangers to do what I wanted to do for him. It was heart wrenching and my least favorite part of the day. I wished so badly that I didn't need sleep so I didn't have to leave him, but I was still dealing with my body healing from just having a baby.
During this phase, it really was a waiting game. We were waiting for his body to get strong enough for his coarctation repair. Brian and I spent all day every day looking at numbers on the screens, asking nurses and doctors questions, listening to blood gas results ("good" and "bad" weren't good enough answers. We wanted numbers), and dealing with setbacks here and there. It was hard to celebrate the mini victories because it was a constant up and down of emotions. Every night we left emotionally exhausted. How long can we do this? We wouldn't have had it any other way though. We were so thankful to be with our beautiful baby boy. We hoped he felt our presence and knew how much we love him. I think he did...
Continued in Part Three...

Owen's Story: Part One

I never thought I would be writing a blog post like this one. I never thought I would belong to the "heart mamas" club, and I NEVER thought I would belong to the "baby loss mamas" club. But here I am. Dealing with my worst nightmare. I need to tell Owen's story for my own sake, but also in hopes that it will help another mom who may be out there in my same situation. Heart broken, baby-less, angry, confused, but yet still full of hope. There are happy parts to Owen's story but also sad parts. It's his life, and I need to share his story. 

On June, 12, 2013, I found out I was pregnant. I took a test that morning and completely flipped out. Brian was at work, so I called my sister to tell her the news. I had to tell someone, and I wanted to tell Brian in person. It was such a crazy feeling! A human life was inside of me, and I was going to be his/her mom! I casually called Brian and asked if he wanted to grab lunch. So we did. After we got our food, I flat out told him I was pregnant. No build up or anything. I wanted a reaction from my non-emotional husband, and I sure got one! He was completely shocked. I'll never forget his face. We were anxious, excited, nervous, but most of all so so happy about starting our little family. On August 10, 2013, at my 18 week appointment, we found out we were having a BOY! A new wave of excitement came over us. We were having a son! I immediately began working on his beautiful nursery and started shopping for little boy clothes.

I had a healthy and relatively easy pregnancy. Other than being uncomfortable and exhausted most of the time, I can't complain. Every time I went to the doctor, they listened to the baby's heartbeat and told me "you have a very healthy baby." I wasn't overly stressed during my pregnancy at all, just the normal stress you have when you are going to become a mom for the first time. I would just sit in his room and hold his little outfits close, imagining what it would be like to have my baby boy in my arms. 

My due date was February 15. That day came and went. Still no baby. I was scheduled to be induced on Sunday February 23, but I really wanted to go into labor on my own. I did everything to try to induce labor. I drank pineapple smoothies, ate eggplant like it was my job, walked for 3-4 miles everyday after work, and even went jogging. No signs of labor. I got a prenatal massage by a Ukrainian woman named Alinna on Friday, February 21. She was known to put women into labor. The next morning, I started having contractions! We called our parents so they could start their drives up from Florida to be here when he was born. I was advised to labor at home as long as possible if I wanted to have a natural delivery. At 3:00 am the following morning (Sunday 2/23) my contractions became a lot more intense, so we headed to the hospital. Fifteen hours later, we welcomed Owen Thomas Parker to the world. He was the most beautiful baby we had ever seen. And I'm not one who thinks all babies are cute. Everyone told me you always think your own baby is cute, but I wasn't convinced. It's so true though. I fell in love with him immediately and thought he was the most beautiful baby in the world. He was perfect with his eyes wide open, taking it all in. 

Owen weighed 8 lbs, 7 oz, and was 21 inches long. He had a really big poop though and lost a whole ounce. I noticed after he was born that he had a weak cry. It took him a few seconds to cry immediately after being born, but they said that was normal for some babies. They also detected a heart murmur upon his initial exam in the delivery room, but told us that was also very common. He was pink, alert, and gorgeous. 
I had no worries. Brian and I were on cloud nine. I was so happy to NOT be pregnant anymore and have my beautiful baby boy in my arms!  
Later that night, our nurse, Laurel, taught Brian how to change Owen's diaper. It was hysterical to watch. I was so proud of Brian being such a good daddy!
Owen had a hard time latching on to nurse, and seemed to fall asleep quickly. I wasn't too worried - that's common for lots of babies. Later that night, Laurel noticed that Owen's head was bobbing with his breathing while Brian was holding him. She was slightly concerned, and decided to take him to the nursery to sleep that night so they could monitor him. Both Brian and I had had such little sleep, we were okay with that.
Over night, his glucose level was low, so they gave him two formula bottles, and it went back up again. No big deal. The next morning, we were woken up by the pediatrician who told us that Owen's heart murmur was pretty significant, and he was referring him to be seen by the pediatric cardiologist. Okay...?  What does that mean? A nurse came in moments later with Owen and told us not to worry- this happens to lots of babies. So we didn't. We spent the next hour just the three of us in our hospital room, looking at Owen and enjoying our time together before visitors. 
Brian's parents came to visit shortly after and then left to head back to Florida. My parents and my sister came a little later. About fifteen minutes after they arrived, Owen was taken back to the nursery to be seen by Dr. Raviele, the pediatric cardiologist.
 Dr. Raviele looked at his echo and listened to his heart.
This is the moment where my heart sunk into my stomach and I felt like I couldn't breathe. After examining Owen, Dr. Raviele came out of the nursery in a hurry and said, "Your baby has a very serious heart defect." It was an out of body experience. I felt so completely sick to my stomach. I completely lost it and started to break down sobbing, trying so hard to hold it together. We were in the middle of the hall outside of the nursery, so we walked down to our room. The next thing I knew, Dr. Raviele was drawing pictures of a normal heart and then pictures of Owen's heart. He told us that Owen has Shone's Complex, an extremely rare heart defect that consisted of three to four problems. He said there was nothing I did during my pregnancy to cause this. He told us that Owen was in the NICU being prepared to be transported to Egleston via helicopter.

One of the NICU nurses was such an angel. She came up to me, hugged me, and told me that her daughter had heart issues too. She said it was a difficult road, but she's just fine now. She told me the best advice someone told her was to take it four hours at a time. That's all you can do. Four hours at a time. I can't tell you how thankful I am for that sweet woman and her advice. I had to remind myself of it over and over again...

Waiting for Owen to be prepped and ready for transport was excruciating. So many things were happening all at once. I had just delivered this baby less than 24 hours ago, and I was getting phone calls from Egleston about my insurance and Owen's insurance. I couldn't think clearly. I was also getting discharge instructions from the nurse. I am so glad I didn't have a c-section. If I had, I would not have been able to be discharged early. The fact that Brian and I couldn't ride in the helicopter with him already too much for me to handle. He had to go all by himself without his parents. He wasn't even a day old! Our little perfect innocent baby was sick and had to go to a new hospital. A strange place I didn't even know existed. Was this really happening? I couldn't stop crying.

Thank goodness both of our parents were there to help us with logistics. Owen was wheeled down by the transport team so we could say goodbye to him before leaving. I still feel sick to my stomach thinking about this moment. Owen's flight team members were the nicest people ever. He was in good hands.

Brian ran down to pay our hospital fees before we could leave, and the next thing I knew, I was being wheeled out of the hospital in a wheel chair, empty handed. I had no baby. Nothing can prepare you for this. I remember coming out of the elevator with tears streaming down my face, feeling sorry for the people who had to witness all of this in passing. This wasn't at all what I had pictured. I was supposed to be happy, holding my BABY. One of the happiest moments I had dreamed of having had now turned into a nightmare.

Continued in Part Two...

Owen's Nursery

I wanted to share Owen's nursery. My favorite room I've ever decorated. It reminds me of him, and I still feel close to him in it.

I wanted subtle, neutral colors with a woodland theme. I love the way it turned out. 

I ordered fabric from fabric.com to make all of the bedding. That crib bumper almost was the death of me. I followed this tutorial to paint cardboard letters to look like metal. The whole project cost me $10.  
I love all the little woodland animal friends! My friend Julie made the fox pillow in the middle of the crib, and friends and family gave us the rest of the stuffed animals. Mr. Frog was with Owen at the hospital and was his favorite friend. 

This glider was my splurge. It is the most comfortable chair ever, and I love the gray linen fabric. Owen and I spent lots of hours together in this chair while I was pregnant. The map on the wall is my favorite. It's by the same artist that illustrated "Almost An Animal Alphabet." 
I bought this tree stump at Hobby Lobby and stamped the words on myself. These shelves are perfect for displaying some of our favorite books. The first book I read Owen was "I Want My Hat Back". While I was reading it to him, I realized that it was very appropriate for him because his hat from when he was born was lost in the transport from Northside to Egleston. After I read it to him for the first time, I thought to myself, "We really do want your hat back!" The last book I read him was "The Little Engine That Could." I read it to him multiple times a day during the last days of his life. He really gave it all he could to keep on going...
I got this dresser at an antique store and painted it with Annie Sloan Chalk Paint. The changing pad and cover are from The Lang of Nod.
I made these felted animals for the mobile, and then hung them on sticks from the craft store. I already had all the supplies, so it cost me nothing!
The raccoon reminds me of Owen. His big eyes....
I ordered these prints from etsy. 

And this one is a greeting card.
I love these little wooden animals my sister-in-law Shelby gave us.
 My sister-in-law crotched the stuffed fox, and I made the burp cloths.
I haven't been able to take down the nursery, and I think that's okay. Sometimes I go in it and it makes me happy, while other times it makes me sad. Every little detail was chosen for Owen, and it reminds me of him. I'm not ready for those memories to go away. I'm love this room so much, and I just had to share it! :)