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.  

Friday, August 22, 2008

Escape from Reality

Sometimes I am able to stuff all of the emotional pain in box and put it on a shelf (so to speak) in an effort to resume some sense of normalcy in our lives again.  Other times, the hurt is so painful or the anger runs so deep that I know it would be best just to stay in bed for the day....rather than affect the ones around me.  

Craig is good...he'll often take the boys downstairs in the morning for some breakfast and to watch a little tv.  It's usually just enough time for me to clear my head, read a devotional, and put it all in 'the box'.  However, there are days when the weight of all of this is too heavy for my weak shoulders.  On those days, Craig will often come to the side of the bed and softly say something like, "What's wrong, you seem blah today".  And, I just want to shout..."WHAT DO YOU THINK IS WRONG?...DON'T YOU KNOW I HAVE A CHILD GROWING INSIDE OF ME, MOVING INSIDE OF ME, THAT I WILL NEVER GET TO MOTHER.  ISN'T THAT ENOUGH?".  Yup, those are the bad moments.  And, then there are the sad moments.  The moments when too much is too much...and a single tear will fall opening the floodgates.  And, I'll continue to cry for what seems like no reason at all and every reason under the sun.

I like the days when everything fits nicely in that box on the shelf.  Maybe it's denial.  Maybe it's God's grace giving me a little time to recoup.  Maybe it's a little of both.  Anyways, we had wanted to take the boys to Dutch Wonderland this summer and time was running out.  So, on a last minute burst of I don't know what, we made reservations and headed to Lancaster, PA.  We had two great days.  I was tired, but the box held up well during the trip.  The first day, we spent 8 hours at the amuzement park and the boys loved every moment of it.  The next day we spent swimming in the hotel pool, hitting some outlet stores for back-to-school shopping, and browsing our favorite Amish stores.    

Saturday, August 16, 2008

Mosiac Pieces

I am lucky to have found a Yahoo group called Anencephaly Blessings from Above.  It is comprised mostly of women who have chosen to carry to term as well, despite the grim prognosis.  Some completed the journey 20+ years ago, some much more recently, and some like me, are still being carried along.

One woman wrote in yesterday and I related so very much to the emotions she was trying to articulate.  I recalled a moment that helped me share my feelings with Craig:

Shopping one evening, a lantern covered with mosiac tiles caught my eye, and I thought....that's exactly how I feel.....completely and utterly BROKEN; just like the tiles on that lantern.  And, each little piece of my broken self represents an emotion; sorrow, depression, denial, anger, bitterness, guilt, feeling terrified, short-termperness, maybe even a tiny bit of hope, etc.  And, moment by moment, my attitude can change depending on which piece is front and center.  A friend said, "That's right...but, God will take those pieces and put them back together making something more beautiful...just like that artist made the lantern.  And, then His light will be able to better shine through you, just like it does through the cracks between the tiles on the lantern".  When I read stories from other moms who have walked a similar journey, I can see that "everything does work together for good", but right now, it just hurts so much.

I too struggle with so many (1) finding just the right words to explain this situation to my 5yr old who asks about the baby often and prays for him/her to get better, (2) finding a compassionate and skilled ob/gyn, (3) facing others who don't see any value in continuing, (4) my own fears about delivery complications and future pregnancies should we ever be brave enough to try again, and (5) anxiousness about what it will feel like to let my own baby be cradled in the arms of Jesus while mine remain empty.  

We are certainly taking the "Road Less Traveled" here.  I know God's grace is sufficient to meet us each and every day and I know He can give us the peace that surpasses all understanding.  I also know I can come to Him with big crocodile tears, kicking and screaming like a 2yr old...and He can take it!  : )  He will continue to hold us in the palm of His hand and collect every tear in a bottle, so long as we continue to lean on Him throughout this journey.

Take care,