Posted by: Jenny | May 27, 2008

11.4 on the Happy Scale

Miss Mara’s bilirubin level was down to 11.4 this morning, so the doctors took away one more of her photo-therapy bili-lights.  So she’s now down to just one light.  She’s eating well (actually gaining weight) and is alert when she’s awake.  Tomorrow, provided that we hit no more snags, the doctors will take away her last light and see if she can maintain an acceptable bili level without the aid of those bright lights.

We did have another episode – this time her heart rate was just over 300 BPM – but the doctor said that we will just have to give her a beta blocker to reduce the chances of it going that high again.  Hopefully, it becomes more of an annoyance than a worry, as the doctor said it would be.

Big brother Ben is missing both of his parents, which comes as somewhat of a surprise to me – usually he just wants his mommy.  But, I think it speaks volumes about our boy: the fact that in nearly 26 months he hasn’t ever just cried because he was sad.  Pissed off, grumpy, tired, hungry and extremely two?  Sure.  But he hasn’t ever cried for mommy and daddy before the other night.  Don’t worry, he has an extremely great grandma who is taking him fishing and taking really great care of him.  He may miss us, but he is in good hands.

We linked on the previous post to my family’s blood disease, spherocytosis.  Actually, mine is hereditary, which is why Mara has it.  No, don’t be mistaken.  Ben is not, in fact, the FedEx man’s estranged love child.  He just got lucky on the autosomal dominant disease wheel of fortune, which basically has a 50/50 chance of affecting the next generation of a person who currently has it.  In a nutshell, spherocytes are red blood cells with an odd shape that make up a small percentage of my regular red blood cells.  The blood filters through the spleen, where regular, doughnut shaped red blood cells conform to the spleen so they can pass through it.  Spherocytes, on the other hand, do not conform (damned independent radicals!) and therefore do not pass through the spleen (think Monty Python and the Holy Grail’s Black Knight: “None Shall Pass.”).  Since they don’t pass through, some are destroyed in the process and some die due to lack of oxygen.  The body then breaks these dead red blood cells down for processing, which creates a chemical called bilirubin that the liver then has to process out of the body through the stool.

Still with me?  Wow, that’s commendable.  In short, that’s spherocytosis as I understand it.  There isn’t a cure, but once the affected person’s immune system is deemed mature enough, the spleen is removed, which pretty much solves that particular problem.  If the hemotologist determines that Mara does have it, then we will need to take special care for her somewhat compromised immune system.  It should be awhile though; I didn’t have my spleen removed until I was 5, but each child is different.  We’ll also have to be watchful for signs of anemia (afterall, the spherocytes that die were red blood cells).

At this point, I think that we are just ready to be home with out whole family again.  Come what may, we can handle it.  I really want to thank each and every one of you for your support and prayers.  I think that someone, somewhere was listening to them.

– D.



  1. That sounds like good news. Fingers crossed and good thoughts winging your way for a speedy homecoming.

  2. Yay, Mara! Strength and a fighting spirit are clearly things she inherited from her parents. We all look forward to welcoming you home!

  3. Our thoughts and prayers are with you four! Thanks for the updates. I’m sure your lives feel completely upside down right now. Praying that normalcy comes soon!

  4. It’s all going to work out fine. This is just the way things happen sometimes. I hope the nursery is all ready, not that Mara is going to care. She’ll just be glad to be home with ya’ll.

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