Diagnosis Day

Back to my "One year ago" series...

So it's day #2 of life for little Ruby. She's still at CHOW and Dan and I are home. It's probably 6am when I first wake up. Now, I'm not allowed to go upstairs yet so I yell up to Dan, who didn't fit on the twin bed downstairs. He says something like, "It's only 6. We just went to bed a few hours ago." And I say, "I know but I have to see her." He tells me I need more sleep so I reluctantly lay in bed staring at the ceiling for another hour or two. At that point I wake him up again and he relents. We start getting ready to go. I bring a couple of kids books and a maybe a stuffed animal. I didn't bring any clothes or much else because I was sure we'd be taking her home that day.

Dan drives and gets me a wheelchair as we prepare to enter the hospital. In the days to come I remember us getting choosy about the wheelchairs. Trying to get dibbs on the few adult-sized ones that weren't meant for overweight people (those never maneuvered well in the tight spaces of the NICU). He returns with a decent one and we're off. Poor Dan. He's not only had limited sleep but he's got to push me through that long skywalk, part of which is uphill, all the way to the other end of the hospital!

But we do arrive, and as we do we are promptly reminded to scrub in. So we scrub, for a full 2 minutes we scrub. As the months wore on and we realized how lax the doctors were--we saw more than a few doctors walk right into our child's room after being in other parts of the hospital without scrubbing in before entry--well those 2 minutes of scrub time turned to 30 sec or so. After our hands are squeaky clean we rush off to Ruby's room. That same routine, for all those days was repeated again and again. And every single time I turned the corner to the NICU my heart lept. I could feel it pounding in my chest with anticipation at seeing my baby. I smile as I recall those moments. I remember Dan and I talking about how everyday as we pulled into the parking structure how happy and excited we were to see her. To hold her and kiss her and read to her. We just couldn't wait to be with her and soak up everything about her.

Priceless Moments

That day, when we got to her room, we couldn't go to her right away. We got to the opening of her room but there were two women inside with a large machine. They were doing an ECHO. They said they couldn't tell us much and needed to concentrate. We waited patiently and calmly. I still didn't think about her heart. I don't recall if they said why they were doing the ECHO but for some reason I didn't make the connection to her heart. As soon as they were done I rushed to her side and had forgotten they were even there at all. She was so perfect.

Some time passed. I believe we held her and changed her diaper and so forth. Dan and I were smitten. Our faces beamed...unconcerned with the setting and situation when she was in our arms. I do remember telling my mom the thing I hated most was not being free to talk with her, read to her, and sing to her like I would at home. I said, "Everyone will think I'm crazy if I start reading to a 1 day old baby." And she told me I couldn't let that bother me. I was her Mama and could do whatever I wanted with her and should do my best to ignore everyone else. So I did. I never let that bother me again. The first book I read to her was Breakfast of Champions. I'm sure the nurses did think I was nuts for that. But it's not like she could understand the words. She just liked the sound of my voice, and I needed to read something funny with all that was going on.

There was one activity that I was introduced to that day that would serve as a focal point for me while Ruby was hospitalized: PUMPING. Oh God, how I hated pumping. The lactation consultant informed me that I better get going with it if I wanted my milk to come in and stay in and so we went off for a pumping tutorial in the pump room. My mom came with me, as she would on many occasions to keep me company and ask the right questions. She was great, the lactation consultant I mean, in fact the whole staff of them were great at CHOW. They were some of the most compassionate and knowledgeable people on staff. We always joke that the people at CHOW we liked the best were the cleaning ladies and the cooks! But the lactation staff and the OTs, PTs, and Speech staff were also top notch.

So cute!

Anyway, I was pumping along and we hear a knock at the door. It's Ruby's nurse. She says that the cardiologist needs to speak with Dan and me and I had better get back to her room. My mother urges me to hurry and says she'll clean up. She says, "it sounds serious, you need to be there to hear it all." I, still in my numb state of shock, remain calm and clueless. And so I walk back to the room and see a group of people mulling about. Dan is sitting. There are a few doctors, one of whom will become Ruby's cardiologist, and my father is also there. I enter the room and hide in the back close to Ruby, who I think was asleep in her little warmer. I remember standing...but I doubt that I was because I was still sore from the delivery. Maybe I want to remember myself as standing because that would mean I had more control or something. Odd...

So there we all are, assembled and looking at each other. The doctor who looks like he's in charge starts to speak. Your daughter has a serious of heart defects...Tetrology of Fallot...Pulmonary Atresia...very serious...missing her pulmonary artery...series of open heart surgeries...chance of genetic syndrome...and the one thing he said that always sticks out in my mind, "If you are going to have a heart defect, this is not the one you want...she is on the worse end of the spectrum of heart defects." Oh great. We asked a lot of questions. I was still very very calm. I was worried about that mention of a syndrome.

"What's that?" I asked.
"DiGeorge Syndrome." He simply replied.
"What are her chances of having that?"
"40%"

I asked a few more questions about it. But he evaded them, explained that most likely she doesn't have that. I remember thinking that 40% is a pretty high chance...I wouldn't describe her chances of not having it as "most likely." I was barely concerned about her heart. I don't know why. I guess I just thought, "they'll fix it, then it will be done." To be honest Dan and I didn't even have a minor understanding of what was wrong with her heart until weeks later. And even then new information would pop up and we would say, "What?! You mean THAT'S what her heart looks like!?" It was very very difficult for us to fully grasp the nuances of her heart condition. Now we can draw you a picture of her heart before AND after surgery, without any visual aides, mind you ;) But back then we knew so little.

A snuggly baby is like a tranquilizer

The rest of that second day flew by. We snuggled, I breastfed Ruby with some success. It was always a battle to get her to eat enough. We became experts at using the breastfeeding scale. Weighing Ruby before and after every feed to see how much she'd eaten. She had a lot of problems with choking while eating too, and so we had to be very cautious of that as well. She didn't have reflux yet...that came later. And all things considered the doctors said she was doing very well. She had an NG tube to supplement her feedings so that should could get the nutrition she needed. And she was off of the oxygen that she had needed the night before. The doctors implied that she would probably not need any since she was doing so well off of it. They told us that she would be able to go home probably within a week after she had "gotten her feeds down."

Before we knew it we had to go. It was late and we needed to buy a breast pump. We hadn't bought one because I had planned on exclusively breastfeeding Ruby and I was going to stay home. So we left at a relatively early time and ran to Babys-R-Us. When we got home Dan broke down. That was his day to lose it. Mine would come soon but I hadn't gotten there yet. I'm sure I cried a little, but I wasn't in full freak-out-mode. I was still numb.

Then the internet searching began. We looked through the confusing little CHD booklet the doctors had given us and Googled the names on the pages the cardiologist had circled. And we found something. An article about a little boy who'd been missing a pulmonary artery and now had one. He was 4 and doing well! Dan emailed the author of the article to get the mother's name and explained our situation. And over the next few days we came in contact with this mom and she showed us a whole community of people who we would come to know so well...even if only through the internet. Without that network of parents I don't know what we would have done during Ruby's time at CHOW. We went through some rough times with some of them (some people really don't like atheists and well...Dan is one) but most were incredibly kind and gave invaluable advice to us. I'd like to add a big old THANK YOU to the CHD community right here :)

After searching and searching we went to bed. I disregarded the no stairs rule, because I needed to sleep in bed with Dan that night. We held each other close and tried to build ourselves up for the next day. We talked about how beautiful Ruby was and how she was strong and would be fine. And eventually we fell asleep.