In Memory of our sweet Lily Grace

Lily's memorial services and luncheon will be held on Saturday, Dec 20th at Fellowship Bible Church in Sewell, NJ.

9:30-11:00am Visitation with Family & Friends (open)
11:00-12:00pm Memorial Ceremony (open)
12:00-12:45pm Private Burial
12:30pm Luncheon Reception (open)

In lieu of flowers, we would like to build a playground in memory of Lily at our church. It will be a tangible reminder of the joy Lily brought us, as we gather after church activities with the many families who loved us, supported us, guided us, and wept with us throughout this journey. We will grow lilies there and give our boys a special place to play and remember their sister. Contributions may be made out to Fellowship Bible Church; subject/memo: Lily's Field

Church Address:
590 Jackson Road
Sewell, NJ 08080
Phone: 856-478-9559
http://www.aboutfbc.org/

Directions from Exit 2 on NJ Turnpike:
Take 322 East for approx 3 miles
Turn LEFT onto rt45/N. Main Street (~1 mile)
Turn slight RIGHT onto Breakneck Rd (~1.5 miles)
Turn LEFT onto Jackson Rd and you have reached your destination!

Safe In the Arms of God

At 8pm tonight, our amazing Lily Grace traveled upon angel's wings to be safe in the arms of God. We feel so blessed to have had Lily with us for 5 1/2 days. She was a real miracle to everyone who met her...surpassing all of our research and expectations. We treasured every moment with her. It was truly a pleasure to care and love for our Lily.

Details for services to follow soon. Thank you for all of your encouraging words and prayers.

Lily “Amazing” Grace Frederick

Lily is now 92 hours alive and is expected to amazingly come home with us today. We have been enjoying every minute and are amazed by all her actions and reactions. Lily loves being in Mommy’s arms, listening to our voices, but doesn’t care to be changed. We met with the hospice nurse last night and the best nurses around are teaching us on how to properly care for her.

Please pray for continued comfort, a safe trip home, and SLEEP!

(Sorry for the delay in the update, we’ve had trouble connecting to the Internet)

Lily Update!

Another proud Daddy update...

Lily is now 31 hours and counting! Though she continues with some seizures and shallow panting, she continues to get fed every 4 hours and her heartbeat and temperature remain good. However, the doctor explained that based on her breathing, we should expect Lily Grace to be in the arms of Jesus at some point today.

Mommy is all unhooked and is starting to walk a bit. Daddy has been able to stay with Mommy while family and friends take care of the outside activities (Justin, Evan, and Lucy - the dog).

Thank you for your endless support, love, and prayers. We have felt God's grace, comfort, and peace throughout the last two days. The tears (especially Daddy's) are beginning to flow, so please continue to lift us up in your prayers.

Hello from the hospital!!!!! This is Daddy providing a brief update on today's activities...

Lily Grace was born on 12/12/08 at 10:27am coming in at 17in. and a weight of 5lbs 8oz. Her apgar was 8. The surgery went well despite the waterfalls flowing into my mask. Mommy and I have been enjoying the life of our beautiful baby girl who as I write this has been with us for 12 hours. The day was spent with our family and several close friends who laughed, cried, hugged, prayed, and sang with us (Oh, and captured the day with over 500 pictures). The doctors and nurses have been so loving and caring. We simply thank God for his grace, our forever treasured moments with Lily, and the endless support of love and prayers throughout the globe.

Please continue to pray for strength, peace, and comfort as Lily has had a couple seizures.

Exactly one week from now...

It's 10:30am and in exactly one week, surgery will have begun and we will have probably met our Lily Grace.  Craig and I will have held her soft hands and feet and caressed her sweet cheeks.  Only to know we will shortly be giving her back to her heavenly home.  I pray she will be able to breathe on her own and be with us comfortably for at least a few hours.  Enough time for me to recover from surgery and to really hold her in my arms.  Enough time to allow her brothers, grandparents, and other loved friends and family to meet her.  Then I pray, I will have enough peace to not beg her to stay.  I pray for wisdom to find just the right words to comfort Justin (& Evan...though not sure how much he'll be aware of) and grow his faith through our loss.  I pray for full physical and emotional healing for the weeks ahead.

While I try to remember not to worry about tomorrow, let tomorrow worry about itself....there are plans and decisions that need to be made and require us to think through the details of what is to come.  And, it continues to break my heart.  

But, we try to stay busy each and every day and that helps.  Making plans to focus on our family and create good memories for our boys.  We had a wonderful Thanksgiving with my family.  I was thankful to have felt good enough to travel, so we could spend that time with my extended family.  Then, we came home and started the Christmas festivities...

We decorated our Christmas tree and set the boy's GeoTrax trains underneath (they really liked that)....

We let them sit on Santa's lap, fully expecting Evan to cry.  But, he surprised us!  He couldn't wait to jump right up and tell Santa something on his wish list...

During this time of dreadful anticipation, I find myself re-reading so many of your words of encouragement.  We have been shown a great amount of love through letters, emails, and thoughtful, generous gifts.  Like the Footprints poem, I know God is truly carrying us through this grief...there's just no other explanation.  But, I am sooooo thankful to the many of you who have helped to shoulder this burden and continue to walk along side of us.  Thank you. 

Preparing for Lily...

Look at what my friend, Amanda, bought for Lily...(not the same Amanda I introduced you to earlier...though this Amanda and I also met at the University of Delaware).  She has twin girls (age 5 now) that were preemie size when they were born.  I had asked her for advice on where to purchase something soft and sweet, as I was having trouble finding anything appropriate for Lily's anticipated small size (3-6lbs) and special enough for the occasion.  Look what arrived in the mail yesterday:  

Inevitably, as we prepare for Lily's birth and death, there are moments that allow the reality and sadness of Dec 12th to settle in.  There will be no joy on that day.  But, I will continue to pray for love and peace to embrace her, to surround us, and to comfort our families.  

Some have asked if we wish we didn't know about Lily's condition, like the many mothers who experienced this type of loss 20+ years ago (before ultrasound technology was regularly used). In the beginning of this journey, I would have probably said, "yes".  To experience the shock of the diagnosis and to lose your baby all in a matter of moments.  Well, at least it appears as though you'd be able to get the grieving done all at once.    

But, God knows my heart.  Perhaps He knows the shock of the diagnosis plus the loss would have been too much for me all at once.  Perhaps He knows I needed these months to wrap my mind around data, to prepare birth plans, keepsakes, and funeral plans, to prepare my children's hearts, and ultimately, to grow stronger spiritually.  "For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:10-12  There is nothing like suffering to bring you to the feet of the cross.  To search for goodness in the midst of a trial, to lean on His strength in times of weakness, to set our eyes on eternity, and to learn what it means to trust in Him alone. 

And so, we prepare what we can for the time we will have.  An outfit for burial, a special blanket to wrap her in along with our love, gifts from (and ultimately for) the boys, photographs, and keepsakes for remembrance.  More bittersweet moments.  

  

While we prepare for the things we can, we know that Lily's hope and future is in Heaven and a place is already prepared for her.  Jesus said, "In my father's house are many mansions; if it were not so, I would have told you.  I go to prepare a place for you".  John 14:2  

Meeting Lily in 4 weeks...

Lily's birth date is scheduled for Dec 12th at 10am.  I get anxious just thinking about what that day will be like and what we will be feeling.  My heart is heavy.    

I will be 37 weeks at that point, which should mean Lily's lungs will be fully developed.  We decided to plan for her birth before Christmas, so as not to risk going into labor or having to plan funeral arrangements over the holidays.  I feel selfish for choosing a date just to accommodate these personal motives.  On the other hand, if we didn't know anything about Lily's condition, a c-section probably would have been scheduled for 38 weeks anyway.  I think it will be good to have the holidays and family gatherings to look forward to each year; to help us through moments of sadness.  

We decided on a planned c-section because....

• My last pregnancy was a c-section; a vbac would mean possible (yet small) risk for uterine rupture,
  
• The likelihood of going into labor is slim without the baby's pituitary gland to signal readiness,
  
• Having labor progress effectively is difficult without a fully formed (hard) head to push through,
  
• We're hoping for better color presentation and greater likelihood to have her with us for a few hours,
  
• The ability to plan to have our boys and family available to meet her.

While those are all very good reasons, a c-section is still surgery and there are concerns with any surgery.  I am not looking forward to it or the recovery at all.  So, if God decides to allow Lily to come all on her own--with an easy breezy vaginal delivery (it's in my genes evidently...I've just never experienced it)--I would be very happy to cooperate.  It's all in His hands.  

And, what good hands to be in!!!  We couldn't be more pleased with my ob/gyn (Dr. Z), my Maternal Fetal Medicine Specialist (MFM), the hospital, the nursing staff, or the neonatolgist (Dr. G).  We had an opportunity to see the labor and delivery section of the hospital this week...quite by accident.  

We had an appointment with the neonatologist to talk about our birth plan.  When we arrived, we asked for the doctor by name, we were signed in, given paperwork, and sent to Labor & Delivery to meet the doctor.  When we arrived, the nursing staff was ready and waiting to put me into a room.  

"A Room?", I thought out loud.  

One nurse said, "Look how cute she looks, all belly, wouldn't even be able to tell she was pregnant from behind".  Again, I mentioned we were there to see Dr. G...."the neonatologist".  "Ohhhh"...from the nurses.  

Evidently, there's an ob/gyn with the same last name.  While we waited for the right Dr. G to come get us, I had the opportunity to explain our baby's diagnosis.  Well, those nurses...they just wrapped their loving arms (figuratively and literally) around me.  One nurse took us into a labor & delivery suite and asked us if we would have a birth plan for them, explained how things would work as far as she knew, and we were able to ask her questions as well.  A so-called accident...all part of God's loving hands to relieve an area of anxiousness for me.

Then we met with Dr. G, the neonatologist...or, as I explained to Justin, Lily's doctor.  If you remember from a previous post, our ob/gyn had contacted him even before our first appointment (having only heard about our situation).  Dr. Z talked to Dr. G about our baby's diagnosis, prognosis, and opportunities for organ donation.  Since that first conversation, the neonatologist has been looking into many different angles and talking with several organizations and doctors (like transplant teams and cardiac surgeons, etc.) to find some loop-hole to allow us to have the gift of giving.  However, it's kind of tough to go up against a Supreme Court ruling.  I was so impressed that he had put so much effort into trying to meet a need he had heard we wanted.  He was easy to talk to and very knowledgeable.  He told us it didn't matter when we went into labor, he would personally be by Lily's side.  He continued to take us through the different NICU areas and explained different circumstances to us.  At the end of our conversation, he introduced us to one of the NICU nurses.  He explained that she runs a mourning mommies support group.  Again, so touched and grateful to have doctors and nurses that are compassionate and caring! 

I guess that's all the news that's fit to print.  My ob/gyn apts continue to be every 2 weeks.  At my last one, my blood pressure was 120/80...good news there.  It doesn't look like it will be a problem for me this pregnancy.  I continue to measure right on target as well, which is also good news.  From what I understand, anencephalic babies cannot swallow.  This allows the amniotic fluid to continue to build and build.  It typically becomes a problem between 30-33 weeks.  So, I'm thankful that seems to be under control still.

Please continue to keep us in your thoughts and prayers.   : )    

Trick-or-Treat!!!

As Craig says, we are officially "fall-ed" out!  We enjoyed many fall festivities this season...pumpkin picking, apple picking, hayrides, painting pumpkins, and making caramel apples and apple crisps.  Today the boys got dressed up and did some trick-or-treating.  Justin was my Knight in shining armor and Evan was his dragon:

Okay!  I did actually bribe them with chocolate candy to get these photos!!!  : )  Then we were off for some trick-or-treating with our friends Tinkerbell and Carebear.

Happy Fall!!!

30 Week Update

It's been a few weeks since I last wrote, so I suppose I should update you all.  Though, we're sort of in this "in-between" stage; where things aren't as emotionally overwhelming as they were following the initial diagnosis, nor as difficult as they will be as we come closer to the end of this journey.  

Right now, we're trying to find small moments to treasure.  To find the beauty in the ashes.  To see the blessings through the suffering.  Of course, everything about this trial is still difficult--I still have my crying moments and angry moments.  No, it's not easy to explain our pregnancy's diagnosis to questioning passerbys.  But, I think we've also come to this middle stage of peace and acceptance.  Where I'm undeniably pregnant and yet physically, I still feel great.  I'm not loathing the pregnancy part, as I feared I might.  With my two boys, I just wanted to move past the pregnancy part--I was huge, uncomfortable, tired, and did I say huge?  : )

Maybe it's because I know this may be all I have with Lily?  I find myself seeking out the joy in carrying her.  While I carry her, I know she's safe and growing and moving inside of me.  As a family, we enjoy the "guess which body part" game on my abdomen as she tosses, turns, and kicks.  Justin walks around our house spelling, "L-I-L-Y" (he's big into spelling and writing these days) and has drawn a few pictures for her.    

And so, in this middle stage, I am torn.  There's a part of me that just wants to stay pregnant, where she continues to be a part of our everyday life.  But, then there's another part of me that says, okay, if I can just make it to Feb, then I won't be this sad, sorrowful person any more.  A part of me that wants to move past all of this heartache.  Of course, the more I learn about the grieving process, the more I understand that I will never go back to being the same as I was before this awful diagnosis at 13 weeks.  I will be forever changed by this experience with Lily Grace.  All I can do is pray that the sharpness of this sword will dull over time, and I will see some of Lily's blessings in myself and in the lives of others.    

Anyways...we had our 30 week apt today.  Glucose testing results came back fine.  Blood pressure was a little high, but I'm also fighting a cold, which may have contributed to the slight elevation (that's what I'm hoping anyway).  I haven't gained any weight in the last 8 weeks (Yes, I'm eating well)...not sure what that might mean about Lily's growth.  I'm measuring right on target, so excess amniotic fluid doesn't seem to be a problem yet.  Lily's heart rate continues to be strong at 140 beats.  Since I met with the midwife in the practice today (it is so neat to be associated with a practice that includes such a lovable midwife), she wants me to come back next week to see Dr. Z before he goes on vacation, rather than wait until he gets back.  We'll talk about scheduling a c-section, possibly getting another ultrasound, and meeting with neonatologists to write up a birth plan.

    

Other updates...we officially enrolled in a Duke University study for Neural Tube Defects.  They have a specific research effort well-underway specific to Anencephaly.  It requires blood from both Craig and I, plus Lily's umbilical cord blood after she is born.  The research team runs extensive genetic and chromosomal tests against hundreds of other samples, looking for potential gene pattern similarities.  While we will probably not receive results directly related to Lily's diagnosis, they do publish annual newsletters with their latest research findings.  Their hope is to identify the causing genes or environmental issues, and to look for ways to reduce and prevent an anencephalic diagnosis.        

Babies Really are Miracles from Above

Last night, my friend, Amanda, called to check in.  Amanda and I met during our first semester of college.  We joined a dance company together, became floor-mates in a dorm, "brothers" in a co-ed Honors Fraternity, and also lived in the same house for two years.  We've known each other now for 14 years...wow, that went fast!  

Unfortunately, she moved many states away from me five years ago.  I try not to make her feel too guilty about it when we talk....love you, Amanda!  Yes, the truth is I would rather her live close by, but I know she is doing great things at the Mayo Clinic and I am proud of her accomplishments.  Below is a picture of my college roommates at Amanda's wedding from a few years back (It was in a frame on my desk...I just grabbed the closest picture to scan in):  so, there's me, Gail, Amanda, and Joy. 

 Anyway, at the end of our conversation, Amanda hesitated and said, "I have something to tell you".  Through her tears, I could feel her empathy as she went on to say, "We're expecting and I didn't want to tell you...".  She is due in February, so she has been holding this in for awhile.  I was touched by her sensitivity and overjoyed for her!  I could picture her belly close in size to mine and immediately felt a unity, not a division.

One of my first questions was, "Have you had any ultrasounds?  Do you know if you are having a boy or a girl?".  But, honestly, I realize what I was really searching for was whether or not they knew if the baby looked healthy.  (I just realized that while she told me the sex of the baby, she may not be ready to share that information with everyone.)  But, I will tell you that everything seemed to look good and healthy.  (I can let out a sigh of relief...thank you, Lord)  Congratulations Amanda, Brian, and Big Brother Samuel!  

As I explained to her, and now to you....having two boys already--I know the joy and understand the miracle.  Through God's grace, I have no bitterness in seeing other women pregnant or seeing newborns.  In fact, to me, it's reassurance that pregnancies can go well and babies can be born healthy.  

See, I don't think I will ever look at a pregnancy with the same innocence I had before this diagnosis.  For now I know of 1001 reasons pregnancies can go all wrong and have heard too many stories of babies (whether in the womb or newly born) dying.  So now, I look at newborns in complete awe and realize what a miracle it is for them to be here.

Of course, I still have a deep sadness about our pregnancy.  It's easy to start thinking about what I will be missing in the process of mothering Lily.  I am heart broken when I think about picking out sweet little outfits, the early coos and smiles I will never see or hear, or watching her grow and play just as my two boys do (well, not exactly, I see dolls and coloring vs cars and constant wrestling : ) )  Yes, those are the thoughts that can easily turn on the waterworks.  

But, I have choice.  I can dwell on what I will be missing with her here.  Or, I can set my eyes on Heaven.  As you can imagine, that's easier said than done.  But, when those sad thoughts start flooding in, I force myself to remember there is nothing here on earth that can compare with the glory and riches in Heaven.  There is no safer or sweeter place for her to be.  There are no tears in Heaven, because there is no hurt or pain.  Lions will lay down with lambs.  And, our time here is but a grain of sand in comparison to all of eternity.

I also like to listen to the song written for Audrey Caroline:  I Will Carry You

Here are some of the words:    

There were photographs I wanted to take

Things I wanted to show you

Sing sweet lullabies, wipe your teary eyes

Who could love you like this?

People say that I'm brave but I'm not

Truth is I'm barely hanging on

But there's a greater story

Written long before me

Because He loves you like this

So I will carry you

While your heart beats here

Long beyond the empty cradle

Through the coming years

I will carry you

All my life

And I will praise the one who's chosen me

To carry you

Such a short time

Such a long road

All this madness

But I know

That the silence

Has brought me to His voice

And He says...

I've shown her photographs of time beginning

Walked her through the parted seas

Angel lullabies, no more teary eyes

Who could love her like this?

                   

Finding Dr. Z

So, there's an analogy I remember that goes something like this:

Once upon a time (well, maybe not exactly like this) there were three men stranded in the middle of the ocean.  All they had to care for them was a life-raft and their great faith.  The three men fervently prayed and knew God would rescue them and bring them to shore safely.  

Within a day, a cruise ship spotted them!  The first man said, "Thank you, God", and willingly allowed himself to be rescued by the cruise ship staff.  But, the other two men did not want to limit God's power and continued to pray and wait for God's caring hand to bring them to shore.

Several days passed when a rescue helicopter spotted the two men drifting in the waves.  The second man said, "Thank you, Lord" and willingly allowed himself to be rescued by the helicopter.  But, again, the third man insisted His God was more powerful than that and would surely come to his rescue.  

Do you know what happened to that third man?...................He drowned!  And, when he got to heaven, he said to God, "I had faith in you and yet you didn't rescue me".  God answered, "I sent a cruise ship and a helicopter...what else did you want from me?".

I've often felt like the third guy over the past couple of months.  Particularly, when it came to selecting a doctor and a hospital for Lily's delivery.  I wanted a doctor with compassion and skill who would support us throughout the remainder of this pregnancy.  But, I also wanted a NICU with experienced and compassionate doctors/nurses caring for Lily.  It took patience, continued research, and talking with friends, but we have received a few names of pro-life doctors with very good recommendations associated with top delivery hospitals.  I was so focused on choosing just the right one...the very one God wanted to place us with.  Finally, the day we met with the MFM, I came to this conclusion....perhaps it doesn't matter which of these doctors we choose...aka whether it's the cruise ship or the helicopter.  The point is, they are coming from Him.

Side note:  On a particularly disappointing day, when it seemed like quite an obstacle to find a compassionate and skilled ob/gyn at a hospital with a strong NICU, I called the Cornerstone Crisis Pregnancy Center.  I wouldn't have thought of it on my own, but a friend said our situation would certainly qualify as a crisis pregnancy and thought the pregnancy center would surely have a doctor recommendation for us.  What a blessing!!!  The woman I spoke with was so empathetic.  She told me to sit back and relax, and she would find the doctor for us.  She explained how the pregnancy center had many pro-life contacts--nurses and doctors--at surrounding hospitals.  She called later that day, after speaking with their own Director of Doctors.  He agreed to personally take us on.  In addition to the doctor recommendation, the center sent me several reading materials (The Power of Powerless, I'll Hold You in Heaven, and Continuing a Pregnancy After an Adverse Diagnosis).  How awesome and reassuring! 

We haven't yet met with the doctor recommended from the Crisis Pregnancy Center, and I don't think we will need to...but, I wanted to tell you this because I wish I had known to call the local crisis pregnancy center.  I wish our doctor had recommended it with the initial diagnosis...I think it should be standard protocol!  And, so I tell you, so that you will be able to share it, in case someone you know of ever needs this special kind resource.     

Anyways...Shortly after speaking with the Crisis Pregnancy Center, we had the apt with the MFM (the one we absolutely loved).  During which time, we also learned about Dr. Z through two friends and he just so happens to occasionally work with our MFM.  We met with Dr. Z today and were immediately met with compassion.  He had heard about our situation through a friend and he knew we were looking into the possibility of organ donation.  I think what impressed me most was that he had taken time before our appointment to call the NICU at the hospital where we will be delivering and talked to them about an anencephalic diagnosis, including organ donation.  He was just as shocked as we were to hear about the Supreme Court ruling against it, but had information on tissue donation.  He had planned to call to get more information on that possibility, and we'll be able to talk about it at the next apt.  

So, it looks like we have a chosen a doctor and a hospital....and I will choose not to be the third guy stranded at sea, but rather say, "Thank you, God".

Our next steps will be to meet with the neonatalogists to develop a birth plan.  Craig will also start the process for meeting with funeral homes and looking at cemetaries or other funeral arrangements.  So, please pray for wisdom and strength in these upcoming decisions.        

First Day of Pre-K

Justin started Pre-K today, so here are a couple of pictures.  Justin was ready and excited to go and so was Evan!  I was so proud of him for being so confident.  He walked 10 steps ahead of me all the way into the classroom.  He emptied his bag and just asked me to wait long enough to kiss me goodbye.  At that point, Evan saw all the kids playing with toys and started saying, "I wanna stay, I wanna stay"....louder and louder and louder.   : ) 

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.  

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.    

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 things....like (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,

Jessica

Where the Story Begins...

July 3rd:  Craig and I opt for an ultrasound for our 13 week pregnancy to give us peace-of-mind after a bleeding episode the previous week.  We see the baby's heart beating and breathe a sigh of relief.  As the technician continues on with the details of her job, it is apparent that she is having trouble seeing everything she needs to see.  After calling in a more experienced technician, it is immediately clear that something is seriously wrong.  They can not say what exactly, as we would need to hear it directly from our doctor...but, their eyes say it all and our hearts drop.  When the doctor arrives (what seemed like an hour later), he explains as tenderly as he can, that our pregnancy is not "viable".  And, for the first time, we hear a word we never knew existed, but would soon become the nightmare we would endure...Anencephaly. 

We cancelled plans for the holiday weekend and took the time to look deep within ourselves to make a decision about whether or not to continue the pregnancy.  We were thankful in the midst of our heartache to keep our two boys (Justin-5 and Evan-2) close to us...treasuring every bit of their laughter as it brought joy to our souls during the darkest hours of my life.

After the weekend, it was still difficult to articulate myself verbally and so I wrote.  Below is the letter we sent to our closest family to give them more information about our baby's diagnosis and to explain our decision:

Dearest Loved Ones,

We are deeply sorrowful about our baby's diagnosis of anencephaly.  And, while I am not yet capable of finding the words to explain our thoughts and feelings clearly while fighting back tears, it turns out that writing comes more naturally and my words seem to flow endlessly.

The road ahead seems long and dark.  But, I realize I am not alone in this and I know you will all be grieving and looking for understanding as well.  So, I thought I would share my thoughts, my findings, and our decisions with you in this manner. 

First, what is Anencephaly?  It means that part of our baby's skull and brain are not developing or are non-existent.  It is a neural tube defect that is always 100% fatal.  Our baby will either die in utero from an infection, during the stress of delivery, or more likely, within mins to days thereafter.  It is a defect that occurs on the 28th/29th day of pregnancy....before we would have even known we were pregnant.  Our baby will never see, hear, or ever be conscious, but his/her heart may beat for a short while and he/she may have some muscle reflexes (like wrapping a hand around a finger).  We are most thankful that he/she should never feel pain.  

But, we struggle with the medical care options available to us and the baby.  Sadly, we have been praying that God would take this baby now, at His own will.  Terminating this pregnancy seems like the easiest way out...in the short term.  However, I believe I would never have peace in that decision and would second-guess it for the rest of my life.  While I could never judge someone for choosing a different path in this situation, I cannot be the one to choose to stop our baby's heart from beating.  His/her death cannot be on my hands.  Instead, we will choose to carry this child as long as God intends and hope that at the end of the difficult journey, at least we will be able to say we did everything we could and have a sense of peace with the decision we made.  

Believe me, I fully understand the horridness of what this means and have read many personal stories of women who have taken this journey.  I know it will be the deepest sorrow I have ever felt...it already is.  The heartache of carrying this child to term and even having to make decisions about delivery timing, vbac vs. c-section, medical intervention for the baby should he/she live several hours (like feeding tubes, oxygen, etc.) and funeral arrangements...it seems too much to bear.

When you have a moment, read this story of a woman who found about her son's anencephalic condition at the 20 week ultrasound and was encouraged to induce labor then, but didn't.  There is also a link for a lovely video about her son, Austin John that is worth looking at as well--it has a great song that I have been listening to each day.  The stories are tear-jerking, yet encouraging and insightful.

This is the full story of this woman's journey with anencephaly:

http://www.anencephalie-info.org/e/austin.php

This is her son, Austin John's lovely video:

http://www.youtube.com/watch?v=aB8Ti-Dhpco

Anyway, before following the suggestions of her doctor, this woman first decided to seek the counsel of her priest.  She pleaded with him to give her permission to induce delivery at 20 weeks, stating her case that she would merely be life-support for this child.  What she writes brings me comfort:

"He listened intently to my sorrow and calmly explained that the church, in this circumstance, feels that at 33 weeks would be a proper benchmark to induce and delivery.  The reason for this is that any healthy baby will survive a delivery at 33 weeks, anything prior is not likely and very risky for death.  The church feels that this baby is meant to die from Anencephaly.  Anything prior to 33 weeks would be a different cause of death.  At 33 weeks, the risk of carrying this baby increases for me, which is also another reason for that benchmark.

My arguing with him did not change the churches standpiont.  I told him how I felt and that I was praying for God to take this baby to heaven now, at his will.  He shared that even Jesus pleaded with God for a different way before he died and Jesus had the free will to walk away, but he chose not to.  He felt that we were chosen by God to bear this cross and in God's eyes, this baby is nothing less than perfect.  He disagreed with the Dr. we saw and said that right now, this baby is viable.  It is completely alive and with a soul but just imperfect from a medical science standpoint."

Our Pastor came over within 10 mins of Craig sharing our news.  He reminded us that God's grace is sufficient for today; meaning that we need to focus on each day and try not to spend too much time fearing thoughts of the future...that God will meet us in our current situation, and lift us when we feel weak.

He asked us to remember what it felt like when we found out we were expecting.  I remember feeling so much excitement....the first thing I did was say, "God, you are amazing!  This wasn't in our plan and I don't even see how it is possible, so I know you're hands are all over this and you are in control of so much more than we could ever understand".

He helped with phrasing to explain the situation to Justin.  He said Justin may pray for the baby to get better and to let him.  He said Justin may ask, "Can't God help"?  And, the answer is, "Of course He can, but His plan may be a different one than ours".  So far, Justin is doing great.  He is excited about the baby growing in my belly and touches/hugs it often.  Despite his new understanding that his baby "sister" (we'll see about his predictions at the 20 wk ultrasound) will go to live in heaven instead of with us, he still tells me how much he is going to love this baby.

Here are some other thoughts our pastor shared:

Jeremiah 1:5  "Before I formed you in the womb I knew you" 

So, that talks to the fact that this baby does have a soul even though we may question if I am just providing life-support to a body that doesn't have the part of the brain that would even allow it to think and reason.

Psalm 139: 13-16  "I praise you because I am fearfully and wonderfully made; I know that full well.  My frame was not hidden from you when I was made in the secret place...Your eyes saw my unformed body.  All the days ordained for me were written in your book before one of them came to be."  

Our pastor's wife wrote to us and said, "...though it is extremely painful, we know without a doubt God never makes mistakes.  This precious life is not a mistake, but is in God's plan.  A gift and a blessing to accomplish His special purpose in your lives and those of us around you.  God wants to bring glory to himself through this special child."

And, so we will wait for God's timing and pray for His grace to get us through each day over the next 5-6 months.  I know it won't be easy and it will be trying on all of our hearts.  Psalm 27:14 says, "Wait on the Lord, be of good courage and He shall strengthen thine heart.  Wait I say, on the Lord".

With much love, but great sadness,

Jessica & Craig