Hellobee

After the emotional upheaval of our frank discussion with birth parents about their feelings on placement and the emotional medical roller coaster, we felt like we had pretty much done all the hard stuff.

We gave Mama S. and B some time alone with Theo as we all settled emotionally. But when I got back to the room, I found out that the nurse had discovered a new and bad sounding heart murmur. We didn’t even see the doctor until late in the afternoon, but she said she wanted to think about whether to get an echocardiogram until morning. The cumulative uncertainty of our stay was taking a toll. I went home completely emotionally exhausted. There was no reserve left at this point. Deep, dreamless sleep was a good friend.

Luckily in the morning, we came in to discover that an echo had already been ordered. While it would have been nice to avoid an anxiety-filled night, it was a relief to have one less battle to fight. And what do you know? Baby Theo did have pulmonary hypertension, something I had asked about with the first doctor on the first day. We knew this would be a long-term issue requiring follow up, but I felt relief more than anything to finally know what his heart anatomy looked like.

And so it went. The remaining days were filled with little dramas and little victories. He took two ounces! He lost weight. Someone clamped the IV line. Who did it? Must have been “those kids.” Theo got better and we were exhausted. My girls got grumpy. Our house got dirty and people fed us. It was a blur until we came close to the end of the antibiotic course. While we were excited that ending antibiotics would mean discharge to home, we were cautioned that anything could happen and feeding was a major concern.

We agonized about every drop of formula, and learned that the nursing staff didn’t care if Theo spit up after a feeding as long as he took the required volume. For two days I put every mom instinct aside (see, I couldn’t even just be a mom!) to get the required volume into the baby. We learned that Mr. Jacks was by far the best feeder, so he ended up being on prolonged duty to ensure that we would be discharged as soon as the last antibiotic was in the baby. Another requirement was that Theo gain weight for two days in a row. This meant that we wouldn’t know for sure if he was going to be able to go home until the morning of discharge.

Despite the uncertainty, we planned for discharge on the day the antibiotics were to be stopped. On that morning, we packed everything we needed for discharge and hoped for a 20 gram weight gain. He hadn’t been weighed by the time we got there, so we pestered the nurse to see what the verdict was. They put him on the scale and I held my breath as the scale tried to settle on a weight. I did the math as quickly as I could… 22 grams! We could go home. After the elation subsided, I realized that this day wasn’t all happiness.

We had just spent an intensive and prolonged period of time with Mama S. and B. How could we now go back to the arrangement that we previously had with Jack Jack? I couldn’t imagine seeing them only once or twice a year! They were our family, part of Baby Theo’s team, as much support to us as we were to them. Now we were going to have to say goodbye. I wished they could just come move in to our upstairs at home so we could all be together, but that’s not realistic. We all need to live our lives, and that meant saying goodbye.

Over the course of the week, we had talked a lot about how we would do things differently with Theo’s placement. We agreed that we wanted to see each other a lot more. Once a month seemed reasonable to us. We exchanged all our contact information. Our agency discouraged from exchanging any information the first time around, and we followed that recommendation. It makes some sense when you don’t know each other well to be cautious at first. But from our experience, we found that communicating through the agency was a huge barrier. The less barriers between us, the better… so we shared addresses, emails, and phone numbers to facilitate easier communication. I wanted S. to know that she could contact me any time if she was worried about Baby Theo or if she wanted new pictures. I also knew that she would be overly respectful of the access, so I let her know I’d reach out often. She could tell me if I was making too much contact.

That morning was a whirlwind. We needed a car seat trial, hearing screening, CPR training, and to see the financial people.  We brought treats for the nurses and socialized with our favorites. We were assigned to a less birth family friendly nurse that day… but luckily the charge nurse stepped in to help.

She arranged for us to spend the day in a large room so that all four parents could be present. She also arranged for the photographer to come and get some shots of Theo and our whole family before discharge. It was really nice to finally all be allowed to be together with Theo, even if it was under such hard circumstances.

There was a lot to do, but we made sure that B and Mama S had ample time to hold Theo and say their goodbyes. I was teary most of the morning as we made plans to see each other in the next few weeks. There were no words, no way to convey our feelings. There was also no need. What needed to be said had been said. Now it was time to act… make our moves to our new lives, seeing the world through a new lens. In what seemed like an eternity after we entered this hospital with hopes and dreams for a healthy babe and mama, we were finally discharged with a healing baby and a healing family. As we loaded up and parted to go our separate ways, Mama S. said, “I can finally relax now that I know Theo will be safe at home.” I agreed, only because I knew that the new definition of home would be forever changed to include all of us somehow and in some way. It’s a work in progress, but our hearts are full and our minds are busy making a life for this new little soul.

Day of discharge photos… only a week later than what we anticipated.