The ultrasound lasted about an hour. They had a monitor on the wall in front of us so we could watch in color with them as they scanned and searched, whispered and stared.
After about an hour, Dr. Johnson went thru all the images they'd collected and showed us all the abnormalities and concerns. He started out by saying "whatever you decide, we're with you to the end." I knew he meant "continuing the pregnancy." We would have many many more appts with Dr. Johnson.
He started out by saying that Cana's heart chambers were messed up. He explained that for certain one chamber was opening to another and the blood just had no direction and was going "all over the place in there." We would have to go to the fetal echo doc to get the whole picture. But it didn't look good. Then he said she only had one working kidney and most likely the other one would be absorbed back into her body. But we can "work" with one kidney. Unfortunately, this issue only pointed to lots of other things...He said her brain was forming irregularly. Too small for her gestational age (3 weeks too small) and it was oblong for no reason. And we had single artery umbilical chord.
When we got home, i immediately wrote an email to all those following our journey and felt a ton of peace. I spent a lot of time back then in worship. I mean, what else was there to do? We just wanted to live in humble obedience and joyful suffering.
2 weeks later:August 6, 2008, We had our ECHO at texas children's fetal center in the medical center.
Dr. Arni took us into the very small room and asked us to please not talk to him during the ultrasound. I half jokingly asked if it was ok for Mitch and i to talk to each other. He said yes but didn't smile. After an hour of awkward silence and mitch and I trying not to "church laugh" (you know, when you aren't supposed to laugh so it makes wanting to laugh that much worse..so you laugh thru your nose, and giggle...and speaking of which, i kept jiggling the equipment so the tech kept pausing..i really got the "holy spirit" giggles that day). ahem..ok back to the story...
Dr. Nutting asked us to come into his office. We felt prepared.
When we sat down, he began drawing on a photocopy of a healthy heart. Red ink for oxygenated blood, blue for non. Then he began listing and listing and listing...
(click images to see enlarged)
Double Outlet RV • Normally related great arteries • Large Conoventricular VSD w/ inlet extension • Dysplastic Pulmonary Valve • Hypoplastic Aortic ArchThen he flipped the paper over and began drawing what Cana's heart looked like. Two of her valves (DORV) were stacked on top of each other. The arch was closed off, not sending any blood to the lungs. Her heart just kept recycling it's blood back into itself. There were holes in between all her chambers. It was very VERY medical. But he was kind. It was just hard to understand the heart when it's on a piece of paper. AND it's YOUR daughter's heart. and her life. I asked if he'd ever seen this before. He said "No." He said he had seen these abnormalities on several hearts..but NEVER had he seen ONE heart have all of them. I asked if it was operable. He said they would go in with a plan. The plan: After she was born, she was be taken immediately to Texas Children's NICU to administer the PGE (prostaglandin) which would tell her heart to keep beating outside of the womb. (see PDA-patent ductus arteriosus) Then they would do an ECHO for her and see if the heart had changed. Pending no change, her first surgery would be at 3 days to keep the PDA open and open up her hypoplastic aortic arch (to get oxygenated blood to her lungs). However, if the ECHO showed that the DORV (double outlet right ventricle) had not changed...she would be inoperable.
I asked if I could deliver her natural with such extensive heart problems. Dr. Arni said he thought it best if we leave the option for Csec open...But if we had her natural, i could get to the NICU and by her side in 2 hours. If we had a csec, it could be as long as 12 hours. And no, i couldn't hold her before they took her there. Out of all that news, that was what hurt my heart...that i would lose the option to meet her before she left..and maybe even before she dies.
I remember sitting there, feeling pretty strong..but almost forgetting entirely that Mitch was there too. I still feel badly about that. We were holding hands, that much i remember. The rest was just trying to understand the medical jargon. Then we walked out, got in the elevator and was greeted by a cheery mom who asked if this was our first. We shared we had travis, 14 months, at home. "awww..and is this a girl or a boy?" she asked. "a girl." "awww....you get one of each." yes. yes we did. Because no matter what we faced in the pregnancy..no matter what was to come....God had already given us one of each. Cana already counted.