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.