Dream Land
None of us are wearing green and we feel like we are living in a dream state. Our current reality is a lot like a dream with unbelievable twists and turns, the occasional terrifying scenario, a strange environment, and a very cute baby. Seriously though, there are times this all feels like a dream. Maybe it's that we have, more or less, been in a 15x20ft box for three weeks putting us in a kind of non-drug induced trip. Well, maybe Shirley's is drug induced... but we are clean! Shirley is our little dream child as well. Although there is certainly a sense of what things could be like with an average child we couldn't be happier with the not so average child we were given. We still hold to the same belief we held before she was born, that is: Shirley has CHD for a reason beyond what is material and understandable. We also believe that no matter the outcome, Shirley's life is meant to bring good to us and others. With this hope and expectation we can charge into the days, months, and hopefully years ahead that we will be able to enjoy Shirley and the good she will bring to our lives and others. We don't know how many days are in any lifetime but that shouldn't cause us to live in fear. I think we both have a very clear understanding that this world does not revolve around our child, our family, or our lives. There are people suffering and enduring trials far worse than we can even imagine. I'll end this section with this: "Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness."
Slow Going
We had a great talk with one of the "critical care" doctors today (about 10 minutes in length) and he explained Shirley's current status to us. They would love for us to leave the CICU but they just don't have the level of confidence in Shirley's heart that they would like. He said to think about it as a kind of pendulum; one side being a need for CICU care (possibly another procedure) and the other being a well functioning Shirley. He explained that she is just swinging back and forth somewhere in the middle. He was honest and said he has no idea when Shirley will be able to go home but they will do everything they can to make sure it is sooner rather than later. Shirley's leaky valve is the real concern for the team in the CICU and it will be the concern even after we are out of the CICU. What they are monitoring right now is whether or not she will present symptoms that will lead them to take action and attempt to correct her valve issues now rather than years from now. Years from now is by far the best option. During her surgery they thoroughly evaluated her truncal valve and concluded that it was, at the time, not worth the risk to attempt any kind of repair. The heart of a newborn is already extremely small (think strawberry) so imagining the precision needed to repair the valve is almost impossible. Valve replacements aren't really an option this early in life. What is more likely though is that she will need a host of drugs to help her heart to beat efficiently. Like my previous posts have said, her heart just isn't up to par. The Dr. did warn us that Shirley may need a much longer stay at SCH and that should at least be something we are aware of moving forawrd. Now, if you are thinking, "well that is typical hospital care, treat you more than you need and make tons of money on you in the process." I would caution you. Shirley is not the only child in the CICU. We met a family who arrived on Wednesday and will be discharged this weekend. Their son had OHS that same day and was closed and extubated immediately after surgery, sent to the step-down unit the next day and is now only taking the occasional Tylenol to help with pain. Their stay, from beginning to end, is likely to be less than a week. That is impressive and truly a reflection of how hard the team here is working to get children home where they belong. So, think whatever you would like. No two children are the same and I have no doubt that Shirley will leave SCH as soon as possible.
This just in (literally), Shirley drank 17ml (an hour's worth of milk) via a bottle in about 10 minutes. That is great work for a baby that has had so little practice feeding orally.
I hope you are enjoying these posts and find them informative! I am certainly enjoying writing them! The second photo is just killing me! I can't believe how cute Shirley is!
-Joseph
