Wednesday, August 27, 2008

Blog Title Meaning

So, you may be wondering the significance of this Blog's title.  Here's that story:

We had a Level II ultrasound yesterday and it went GREAT; well, as good as could be expected given our circumstances.  When we left, Craig shook the doctor's hand, but later told me he wanted to give him a hug...that's how good it went.  

First, let me tell you the technician believes the baby is a girl.  If that's the case, we have decided to name her Lily.  (If not, well, we'll just cross that bridge when we get there.)  It's not a name I would have considered earlier, but none of the other girl names we liked before seem significant enough any more.  There's a passage in Matthew that talks about the lilies of the field and how lovingly God cares for them.  And, if He cares and provides for them, we must imagine how much more He cares for us, His creation (including this little one growing inside of me).  It goes on to explain that we should not be anxious or concerned about tomorrow.  So, I like what that passage means for us right now.  Plus, I really like the idea of having something tangible after all of this is said and done.  I can see us growing variations of lilies in a garden as a way to remember, think about, and pray for our child, as well as others we may hear about who are facing a similar situation.

The doctor we saw was a Maternal-Fetal Medicine Specialist (MFM for short).  He was the one associated with Dr. Negative (we'll just call her that).  So, you can imagine how very reluctant I felt about going to see someone associated with her.  But, Craig wanted a true second opinion and I'm so glad he pushed me.  We immediately felt only kindness and compassion from the MFM and the entire staff.  The MFM disagreed with several of the concerns Dr. Negative mentioned.  We know there are still risks (no greater than any other pregnancy), but the MFM helped us to feel much more confident about continuing, and about watching my progress throughout the pregnancy to determine which delivery method would be best....kind of like "Don't worry about tomorrow, let tomorrow worry about itself" (there's that consider the lilies passage again!).

The MFM also mentioned something else Craig and I hadn't considered earlier.  There was talk about Lily being a good candidate for organ transplant donation.  Immediately, that sat well in my stomach.  I could picture a family looking for some hope for their child, and while we have none for ours, maybe we could offer some to someone else.  However, one of biggest fears is feeling in control of Lily's passing.  From the beginning, I felt that whether we chose to terminate early or we choose the date for induction/c-section, we are still choosing the date she would die.  I didn't want responsibility for that!  A friend helped me to see we didn't have that much control...we would only be deciding the day of birth and the rest is up to God.  So now, I worry that organ donation changes that.  I have a call into CHOP to verify, but here's my understanding; Lily will be medically brain-dead at birth with some possible brainstem activity.  My guess is the doctors would want to put her on a ventilator as soon as she is born and then wait for us to give the okay to clamp her aorta (sp?).  I'm not sure how I feel or should feel about that.  Plus, I've read there be some ethical issues surrounding organ donation and anencephalic babies.  So, we'll have to wait to hear from CHOP on this.

***Update:  Unfortunately, there are legal issues prohibiting the use of organs from babies with anencephaly for the following reasons:  (1) anencephalic infants will not usually satisfy the standard brain death criteria b/c of adequate brainstem function that maintains spontaneous respiration and heart rate after birth,  (2) by the time brain death or somatic death has been declared, the organs will have undergone ischemic damage, making them unsuitable for transplantation, (3) life support does not improve the chance of successful organ donation from anencephalic babies.

There is still the possibility of tissue donation, but I'm not exactly sure what is needed or how it helps someone else.  I do know the baby must weigh at least 7lbs, which is unlikely for a baby with anencephaly.  

So, that news kind of burst a small bubble for us.  We were beginning to see organ donation as "the purpose" for this tragedy.  It was as if seeing some ultimate "good", would help to make this journey less painful.  Somehow, I saw it as motivation to keep going....somehow knowing the purpose would stall any notions of giving up over the next 4 months.  

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