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 stenosis, coarctation 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."
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.
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...
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