Yesterday, my sister suffered a second stroke in a span of 6 weeks. I received her text messages when I was done with work. It was an emotional night, a visit to the ER. A mild stroke considering but still very serious.
Today, we had to focus on our babies as Scott and I had a visit with a pediatric cardiologist to look at some things about Baby B's heart that had alarmed our neonatal specialist. Scott and I really walked in with naivety. Our doc said he thought he saw a hole in the heart and one side of the heart not beating as strong. Well, she's the biggest and by far the most active baby. I heard that holes in the heart sometimes close on their own, or I'm sure they can fix it somehow. We were not even fazed and breezed into the appointment.
The ultrasound tech took us into a dim room and scanned my babies for over 90 minutes. It was so quiet I fell asleep for a little bit. She took tons of pictures and videos without saying a word and when she finished, she said the doc would review it and then come in himself. So, we spent another half hour by ourselves in the room before the cardiologist came in. Dr. S. He introduced us ourselves and then said he wanted to do some scanning himself. So, he spent another 45 minutes in silence scanning Baby B. Then he said "I'm done. I'm going to take you in the next room and talk to you." Ok.
We went to the next room and he showed us a model of a heart and explained that fetal hearts are different but he would show us how it works in the adult heart.
So blood returns from the body lacking oxygen on the right side (in blue). The right side of the heart pumps the blood to the lungs to pick up oxygen and it returns to the left side of the heart. The left side of the heart then pumps the blood out through a valve into the aorta, a huge vessel that will distribute the oxygen-rich blood to all parts of the body.
He said he sees several serious problems with Baby B, whom we have nicknamed "Gizmo",'s heart. The left ventricle (right half of the picture above) is enlarged and is brighter than usual on the ultrasound, which may mean that it has a build-up of scar tissue. The left ventricle also doesn't seem to be beating regularly or very strong. The valve between the left atrium and left ventricle looks damaged and he sees some blood actually going backwards. He said he took a long time looking at the aortic valve, the opening that lets blood out of the left ventricle so it can exit the heart into the aorta. He says it's really small so he tried to look from really different angles but he wasn't able to see any blood going through. He fears that the aorta might be completely closed, not letting any blood out of the left side of the heart exit into the aorta.
I just kept nodding, trying to memorize every word he was saying so I could understand exactly what was happening. My mind was racing as I memorized the names of the heart parts as he was pointing to them.
He took a deep breath and then said it doesn't look good. What could happen is she could pass away in utero. She could survive until delivery and be born and then pass away shortly after. He said that if she did make it far enough to be near delivery, it would have to be on the mainland where they could be prepared. If she survived long enough, they could operate on her or if the heart was still too damaged, try to get her on the list for a heart transplant. He said we needed to start thinking about who we might be able to stay with on the west coast that would be in a large city, and he could then match us up with a hospital that was equipped to do transplants and heart surgeries. He recommended staying with family because we would be there for a while. He'd have to talk to our neonatal specialist about when to send us up, because they would have to play it safe. They might have to have us go up to the mainland as early as 28-30 weeks. It might be a month of waiting before delivery, and then of course, however long treatment would be. He said to have a list of cities we might prefer by our next vist.
Again, I'm still nodding in shock. Then he said, "there's the troubling sign that there's fluid around her heart which tells me that she's already experienced some heart failure." Even my numbness couldn't withstand that. I looked at Scott and said "I think I'm going to cry." And then I did. Loud, ugly sobs. Even now as I type this, they're wrenching out of me. My baby. my baby girl. You mean, she's dying. My baby girl is dying.
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Ok, I'm back. I had to leave for a little bit. It's still a little raw. It's hard to have to relive it, but I want to put it down. I started this blog to journal our journey to becoming a family and this is it...the good and the bad.
The poor doctor. He just met us and he had to deliver us the harshest news, probably not a real fun job. He said he would talk to our neonatal specialist...which, if this isn't just a cascade of the devil's attacks is out right now. Our neonatal specialist is out because he had an medical emergency himself and is in the hospital. We're to come back to see the cardiologist in another week and half.
I asked him how come she is doing so well if basicallly she's only using half a heart. She's always been the biggest, always days ahead. She's the strongest and most active. I feel more connected to her because she's the one I usually feel moving and kicking. It makes me smile and I talk to her and rub my belly in encouragement. he says that the blood entering her right atrium and ventricle is coming from the placenta so it's oxygen-rich with my oxygen.
a Fetal Heart
The oxygen rich blood from the placenta goes to the right side of the heart but only a little bit goes to the lungs. There's an opening to the right side of the heart so that the heart can pump the blood to the rest of the body. I think this means that our baby's right side of the heart is doing all the work. He says some of that blood may not be getting to the vessels on the outside of the heart which is why there's scar tissue building up on the left ventricle.
The day was a miserable mess. I couldn't leave the little room, and the doctor kindly told us to stay in there as long as we wanted. I just sobbed for 30 minutes and Scott just held me. my only thought was, how do I get out of here and get home without having anyone see me. When I pulled it together, we started to leave but I had to do a bathroom stop first. When I walked in, I saw myself in the mirrow and saw my belly bulging against my T-shirt and a fresh new wave of pain washed over me and I started sobbing again. All this, all this is for us to have three babies...NOT two....THREE. Right now my stomach looks like a swollen beach ball because there's three babies in there.
We went home and I mourned my baby. Scott and I were sitting on the couch during a quiet moment and I felt her kick me hard and I started crying again. "She kicked me" I told Scott. How can my little girl be so alive and so active? It's heartbreaking because she doesn't know anything is wrong. She doesn't know her heart is struggling to keep up with her. How can I celebrate her kicks and movement when there's this impending gloom. I never really thought about how parents of children with terminal illnesses do it. You hope for the best, but how do you enjoy any part of the present when you're wondering how long the present will last. How can I make it another 3 months of panic and fear. Scott reminded me that we have to pray for a miracle. Forget heart surgeries and making it to delivery. We need complete healing by God's hand.
The first day was rough.
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