Thursday, March 31, 2011


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!


  1. We are praying for both Sam and Esperenza! Thank you for sharing your blessings and inspiring hope!

    Sarah Daniels

  2. You've now experienced the trifecta of body secretions ... welcome to parenthood. Stephanie

  3. ridiculous insurance people. glad to see sam progressing! thinking of u always xoxox

  4. Finn was a projectile vomiter. He could nail a visitor from 3 feet away. Good times!

  5. How good to hear Sam is doing better and better. Puking al over mom and dad is just one of his jobs ;)

    I hope these insurance people will find their brain back ... how stupid to allow an operation but not the means to keep Sam healthy at home.

    You all and Esperanza are in my prayers!

  6. Continuing to pray for Samuel - I have him listed as Wolfie in my favorites list of websites - and will add Esperanza's precious boy to my prayers. Hope is a blessed state of being, it can lead to many revelations.

  7. We ran into major insurance issues 12yrs ago, I pray it all works out for you. Praying ~Lis

  8. My Sam was also a puker. It lasted for 6 weeks, and it was intense. I would come to school wearing his vomit all over my shoulder and down my back. Suddenly, when his digestive system matured, the vomiting stopped. Now it's just a distant and funny memory.

    It's wonderful to read your latest blogs. Things sound absolutely wonderful. I love the fact that Sam is such a little fighter.

  9. I love that he's rocking the stegosaurus! And you've clearly now entered the stage in which everything you put on your body will be covered in some sort of bodily will eventually reach the point in which you will chose the shirt that only has 1 or 2 stains.

  10. I consider myself to be a fairly spiritual person. i feel a very close, loving connection with my Savior and these two things I know about Him: He gives me such hope for Sam and for the other little baby. Such hope that I know regardless of everything else He has them in His hands for now and eternity. The other thing I know is that both He and I think insurance companies are from the Devil and neither of us have much use for them :)ha! Glad to hear that you guys are doing so great!
    -Kendall (the stranger in Oklahoma who reads about your baby instead of doing the family's laundry which is piled all over the house.)

  11. Mr. and Mrs. Leclaire!
    I am so so happy to hear that Sam is doing well. I'm extremely happy for you, and can already tell that you are going to be great parents. I hope that things continue to go well!

  12. Wait, did I just read 'gastric revolution and voluminous puking?' Tell Sam that crazy Mr. Andy definitely sympathizes. Just realized the poor kid has two English teachers for parents... on the bright side he's going to have quite the vocabulary.

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