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...

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 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." 

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.

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...