Today was such a busy day for all three of us...
On the one hand, I don't know where to begin; on the other, I have little energy left to type this tonight. How about a simple list?
1. Sam was entirely off of oxygen for 6+ hours yesterday!
2. Sam started breast feeding a little bit. In some ways it's making his feeds more complicated. Because it's nigh impossible to measure how much he takes directly, it's very difficult to figure out how much more he needs. If you guess wrong, he goes hungry or overflows. Today, he overflowed. All over our friend, Anne. All over everything. Repeatedly. Yesterday poop; today, vomit. Ahh, parenthood. I'll dramatize the episode one of these days, but not tonight. Hopefully we'll be able to figure this out in the morning.
3. LOTS of visitors today. No fewer than five people from the outside world came to hang out with Wolfie and us. Very nice.
4. Insurance woes: the energy suck that results from dealing with bureaucracies largely accounts for why there was no post yesterday. Details later. Tomorrow, perhaps. Suffice it to say, the company is willing to pay for the $540,000 surgery and convalescence but not for a necessary monitor to take home once we're discharged. Evidently the $300/month will break their bank. We've had upwards of 20 personal visits or phone calls in re this subject in the last 36 hours.
5. On the bright side, Samuel discovered today that he makes a really cute stegosaurus.
6. Finally, a note on the title of today's post...
Many of you will remember why hope is particularly important to Kristin and me. As noted in the first post of this blog, we named our little baby girl Hope. She had triploidy and was born after just over 20 weeks. She had no chance to live. And though her death hurt us, we held on to hope nonetheless; if we hadn't...I don't even know how to finish that thought. Switching gears. In The Shawshank Redemption Andy Dufresne (Tim Robbins) says, "Hope is a good thing, maybe the best of things." That hope has been rewarded with not only having Wolfie in the first place but also his rapid and impressive progress from CICU to CPCU. Today's gastric revolution and voluminous puking aside, my wife and I really could not ask for much more from the little man. In spite of the severity of his disease, Kristin and I feel lucky. And hopeful. Which returns us to the title of this post. As evidenced by numerous comments and responses on this blog, Samuel is not the only child who has ever had or ever will have HLHS. There is another family here whose baby has the same disease. This baby has been struggling. This baby has been in the CICU upwards of 45 days with few signs of an imminent move. Sam was only there for 12. We are lucky. That said, if it's not too much to ask, those of you who are following, add one more child to your thoughts or prayers tonight. He and his family could use a little hope, too.
That's all. I'm spent. Guess the list wasn't so simple after all. As always, much love and appreciation to all of you.
Oh, I almost forgot...the mother of the child I mentioned above? Esperanza!