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...