Liv's Story - Part 2 of 3

After the flurry of doctors and the good communication that we had received for the first couple days with Liv in the CVICU at Texas Children’s Hospital, things settled down on Wednesday and Thursday. Since we told the doctors on Wednesday that we wanted to proceed with the surgeries, we were expecting to have a more in depth discussion with them about the first surgery on Wednesday afternoon or Thursday. However, we went all day Wednesday and Thursday without hearing anything new and we were not able to meet with either doctors or surgeons (about the surgery; doctors were still available to discuss her current care). While we enjoyed the (relatively) slower pace for those two days, by Friday morning, we (along with our nurse) were quite frustrated by the lack of communication and our nurse was frantically trying to track down the cardiologists and surgeon to talk with us.

Finally, on Friday evening, as soon as our surgeon wheeled his patient out of the operating room, we got to sit down to talk with him and the cardiologist. At that point, they gave us a different plan of action than we had heard previously. The cardiologist explained that for the last two days, they had been discussing Liv’s case in depth with other doctors / surgeons at Texas Children’s Hospital and at other institutions to try to determine if there was any way that they could conduct the surgeries and what chance Liv would have to survive. All of the doctors and even an ethicist were in agreement – there was no way that Liv would survive the series of surgeries (less than a 1% chance), and given that, they would not perform the surgeries.

We were completely taken off guard by the change in direction, which made the bad news even harder to hear.  Through our tears, we spent the next hours poring over the facts of Liv’s case with the doctors and comparing them to the research, trying to make sure that nothing was overlooked and everything was being appropriately considered. When we initially made the choice to bring Liv to TCH, we knew her cleft and chromosomal deletion increased her risks for the HLHS surgeries, and estimated that her chance of surviving the first of the 3 surgeries was around 50%.  The doctors explained that these chances had changed dramatically since she was born early and small, and that those factors were even more concerning than her previous risk factors. Her main risk factors were now: 1) cleft lip and palate (extra cardiac anomalies are known the increase risk, and cleft lip and palate specifically can cause issues with secretions that can damage the lungs over time, as well as cause troubles with intubation, and increase risks of infection, all of which are very bad news when you need to be in pristine condition for a series of 3 open heart surgeries), 2) a chromosomal deletion (any chromosomal involvement increases risks for these surgeries, and while we will never be sure of all of what Liv’s deletion caused since she was so young, we do know that it at least manifested itself in her small size, and there were some indicators of problems with her kidneys and cerebellum, which are in the midline defect family, as  were her cleft and heart), 3) low birth weight (she was 4.1 pounds at birth and the risks for the first surgery increases greatly when babies are less than 5.5 pounds), 4) prematurity (she was born at 36.1 weeks, and risks for the first surgery increase when babies are born before 37 weeks gestation, and there are even differences in outcomes for babies born at 38 versus 39 weeks), and 5) she was small for gestational age (this is a separate risk from weight and prematurity that means that even for being born in the 36^th week, they would expect a baby to be larger than 4 pounds; the average for 36 weeks is about 6 pounds).  

When Beth finally asked, “Are you saying there is no way we can do the surgeries?” it was the longest and most deafening silence of our lives, and it was heartbreaking to hear that they would not. But ultimately, we agreed with the doctors that these risks were insurmountable for little Liv, and decided that it was the right thing to do to not proceed with the surgeries. Our immense frustration with the doctors for leading us to believe that the choice on whether or not to proceed with surgeries was ours (and ours alone), and then not communicating to us for 2 ½ days that it was no longer our choice, was only partially eased by the fact that it was very evident that the doctors had done much more than their due diligence in researching Liv’s case and giving her every chance. The other fact that helped ease our frustration, is that they did not compromise Liv’s care whatsoever while we waited those for those two days.

We were overwhelmed that night with a mix of emotions. From frustration at the doctors and circumstances, to appreciation for the time and effort they took to conduct their research; from realizing our grief over the possibility of losing Liv was real, to relief that we wouldn’t have to put her through the surgeries; from confusion about what to do next, to thankfulness for the clarity of the decision that we worried about most.

One of the blessings of our time in the CVICU was the wonderful nurses, especially nurse Whitney. She was with us for our first night there (the night that Beth broke her toe), and with us again on Friday night. She did such a wonderful job in taking care of us as much as she took care of Liv. She gave us space and created privacy for us when we needed it (we shared our corner of the CVICU with 4 other families), was there when we had questions or needed her, and somehow managed to make us smile when we were sad.

On Saturday morning, we asked the doctors if we could bring Liv home to Louisiana. By the afternoon, they told us that they would be able to fly Liv and us together back to Zachary, and by early Sunday morning, we were headed home – something that we never thought we would be able to do if the time came for Liv to pass away.

Through it all, it felt like there was one blind turn after another, but the thing that we are most amazed by is that in each turn, God was there, providing us peace and comfort. Not once were left wanting; not once did we feel regret; not once did we feel we were alone. Every turn in Liv’s life made it more unique and showed God’s grace and compassion for us, and showed Him working all things together for good.