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.

Liv's Story - Part 1 of 3

So many things have happened over the past two weeks that it’ll take a long time for us to fully process what all has happened. Liv’s physical life was short but full, and God has used (and is using) her life to bless us and other more than we could have ever hoped for.

In an effort to document some of what has happened over the last few weeks (it’ll take us a long time to fully document everything), we will write a couple more blogs on the events in Liv’s life, and break it into several blog posts, as even the simplified story is quite lengthy.

No matter how many book or websites we read or how much preparation we thought we may have had, nothing could prepare us for the joy, excitement, and rush of life when Liv was born. The same was true for when we had the twins – it doesn’t really hit us until we can see and touch our babies – we are their protectors, solely responsible for their life and wellbeing. That being said, the chaos that ensues when having a baby that needs immediate intensive care was even more impossible to prepare for before birth and 1 million times more chaotic afterwards.

It was such a relief to be able to see Liv again on Sunday after spending our first night apart; however, when we first arrived at TCH, we were immediately faced by the seriousness of her medical issues. We spent the next couple days watching various doctors come by to do many series of tests and talking to them to make sure we fully understand what they are testing for and what the test results mean. Every time we would think that we could take a breather - more doctors, more tests. Like we’ve said before, all of the medical staff has been wonderful in caring for Liv and for us and making sure that we know what’s going on and ensuring us that they are taking good care of her – however, it’s still very overwhelming. Through all of the tests, nothing surprising really came of them…her kidney levels were a little high (but that’s relatively normal for newborns), and there were some comments on her brain MRI (again, relatively normal for babies born at 36 weeks, and relatively normal for babies with heart defects), but nothing serious, which was a relief that we didn’t have to deal with an entire new set of problems.

(Liv and all of her CVICU equipment)

Our first 3 nights in the hospital, we averaged about 3hrs of sleep. Between trying to delay Beth’s labor & delivery and being up all night talking to Kangaroo Crew & Texas Children’s Hospital (TCH) when Liv was being transported, we were exhausted by the time we got to TCH on Sunday. To add to the list, Beth broke her big toe around midnight on a chair in the waiting room for the cardiovascular ICU (CVICU) our first night there.

(at 3:00am in the ER, all you can do is laugh’ about it, especially when the xray tech asks if there’s any chance you could be pregnant. I guess “I had a baby yesterday” is a sufficient “NO.”)

There were a couple days though the past two weeks that we will always remember and that Monday was one of them. After being exhausted and while still getting used to the CVICU and all of the chaos, we had back to back meetings with the cardiologist and heart surgeons on Monday afternoon. They told us all of the risks for the HLHS surgeries and all of the additional risks that Liv has due to her cleft lip & palate and chromosome deletion. Even though we knew all of this beforehand, there is nothing that could prepare us for hearing that the risks are “astronomically high” to have our new born daughter undergo life-saving open heart surgery. At that point, it didn’t matter what we’d prepared for, there were no questions we could ask to make it better, and nothing we could do to ease the road that Liv had ahead of her. Our hearts were broken (again) for Liv’s. Even so, we asked if there was a choice to be made (surgeries or no surgeries) and were told yes – we had a tough choice to make.

We spent that night and the next day thinking through our original decision to bring Liv to Houston to have the surgeries, and after much debate decided that if the doctors had no “new” information or risk factors from what we knew before Liv was born, that we should proceed with the surgeries (we had already spent many weeks wrestling with this decision before Liv was born). Therefore, we told the doctors on Wednesday morning that we wanted to proceed with the surgeries for Liv.

Wednesday and Thursday were calmer days than Liv’s first couple days in the CVICU. The initial chaos of new doctors and tests had settled down, and Liv was doing well. This gave us a peaceful period to spend time holding Liv and allow Asher and Eli to visit.

 

We’ll always remember this time with Liv, and believe that this calm before the storm was one of the blessings that came out of our very unusual road with her.