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...