Back-2-School and Summer Catch-up!

Where did the summer go? I cannot believe Sept is here and both of my boys are in school! I really stepped away for the summer....we kept pretty busy (active boys will do that to ya). Anyways, included in this post are links (down below) to navigate you to back-dated posts.

But first, let me share some photos from the first day of school for both of my boys:

Evan started first on Tuesday...his first day in preschool. By the smile on his face, you would never have guessed it would be his first time truly away from me (not counting children's church or MOPs mornings...neither of which I actually leave the building). After watching Justin get to stay and have fun for the last 3 years, I guess he knew what was up. It's like he was saying, "It's my turn!" when he said, "Miss. Ellen's my teacher now!" in his soft, yet teasing voice. His teacher said he smiled the whole day!

Justin started Kindergarten and took the bus for the first time on Wed with six other kindergarten friends in our neighborhood. There were no tears. Barely even a look backwards. I had to remind him to say goodbye to me by LOUDLY calling to him as he was starting to make his way toward the bus...I guess I needed that hug and kiss more than he did! In all honesty, it was terrific to see the kids at the bus stop feed off of each other's excitement....eager to ride the bus, meet their teachers and new classmates.

Well, today was the first day both boys went to school and the first time in 6+ years that I came home to an empty house. I cannot lie....there were tears.

For just a short moment there were tears. The silence of an empty home was like a reminder of what could have been. A reminder that my arms and my time should be filled with the task of caring for a 9-month old little girl. A little girl who would likely be cutting teeth, crawling and making messes, trying new foods, and discovering toys. My life should be complicated with balancing nap times and feeding schedules with the drop-offs and pick-ups for the boys...and, I would count it all joy.

But, thinking about what could have been gets me nowhere good. So, I will think about what will be. Tues and Thurs will become a much-needed "time-for-me" time....well, probably better stated as a much-needed "time-for-the-house" time. Hey, there's two days....let's compromise. One day for me and one day for the house. Okay, that's settled! : )

No, in reality, I am really looking forwarding to having some time to exercise and scrapbook. Those are the two activities I do just for me (although, by the way my boys enjoy flipping through their albums, I think they like the scrapbooking end result too). It gives me time to look through photos, like replaying memories. Journaling becomes the space to record all that is good about a person or an event. It gives me a creative outlet and a moment to thank God for every remembrance this life offers.

So, that's where we are...let me share where we've been!

Atlantis and the "New Normal"

S.S. Lily

Dutch Wonderland

Baptism and God's Faithfulness (working on this post)

D-Day = Bad Day?

"D-Day" is the ABFA (annecephaly support group) term used to describe the yearly anniversary of our baby's diagnosis. Do I expect it to be a difficult day? I'm not sure. I know it's the anniversary of the worst day of my life...

Exactly one year ago, we sat in an ultrasound room and were told the unimaginable. We saw our baby’s deformity with our own eyes, understood words we had never heard before, and our world came crashing down.

Yes, December may be tough too, but I think it's possible today may be worse. December 12th is the day she lived. That’s the day we got to embrace her and we felt only love for her. It’s hard to explain unless you’ve had a similar experience....but, each and every baby truly is a gift from above.

And, Dec 17th was anticipated. We had peace in knowing her purpose had been fulfilled. We were told Lily’s condition was "incompatible with life". So, when she lived for 5 ½ days, we were so very proud of her and thankful for God’s blessing.

But, July 3rd, 2008….easily the worst day of my life. This is the day we went from feeling sweet anticipation to feeling like we were caught up in a storm. All celebration of the pregnancy seemed to stop. This is the day we felt a loss of hopes and dreams and began grieving the anticipated loss of a baby girl we would never know here on earth.

I know the story doesn't end there. I know I loved feeling her grow and move inside of me and we learned to celebrate the pregnancy and all of that. But, July 3rd, 2008 was a tough day. We couldn't see past our tears or broken heart to know God's faithful hand was upon us or that He would show us blessings down this bittersweet road.

Anyways...

Today we will spend some time at Lily's grave fixing it up a bit and then we will go to Longwood Gardens. I think it will be nice to look around at all the gardens-pointing out and learning about all the variations of lilies with our boys. Hopefully, I'll have a chance to share some pictures when we return...

Dutch Wonderland

We went back to Dutch Wonderland this summer. This time we camped with a bunch of our friends from church. Look at our camp site...notice the horses right on the edge of the water (it was an awesome camp site and we had a GREAT time):

As with most events we've planned this year....it rained:

(Paul and Kym with two of their four kiddos - Javen and Ellie)

However, sunshine came the next morning and we had our 'rainbow' moments (these are a few of my favorite pictures from the trip):

(Tara and Kym with Kym's youngest son Javen)

(Justin - loved all the rides)

(Evan - much more timid than his daring brother)

(Chris and Doug)

(Chris and Doug's daughter Gracie with Justin)

Thankful for good times and GREAT friends! : )

The S.S. Lily...

For Father's Day this year, the boys and I bought Craig a motorized toy boat. Introducing the S.S. Lily:

We chose for Lily to be buried at a cemetery on a hill overlooking a small lake very close to our home. As a family, we can go to the playground there, have a picnic, take turns driving the boat, and then hike up to Lily's memorial spot in the cemetery....that's exactly what we did this Father's Day.

This is the memorial stone Craig's parents thoughtfully purchased for Lily:

This is a picture of the boys we took hiking up to the cemetery in March:

Cemeteries have always felt eerie to me. But, there is just something so natural about Lily's cemetery and the way we can work family time into our visits. It's so much more peaceful than I would have ever expected.

Atlantis and "The New Normal"

I thought I would always envision Lily as a newborn baby. The picture I hold closest to my heart is, of course, of her as a newborn. But, that's not what I feel like I am missing. I feel like I should be carrying around a 6-month old on my hip. Lily should be rolling over, scootching (possibly starting to crawl, if she'd be anything like our boys), tasting new foods, sleeping through the night (ahh). So, I guess I'm missing the milestones.

I didn't expect this part of the process. I guess I thought I would "carry Lily as long as God intended" and then go back to living normally. Why didn't I anticipate this part? I guess I tried to focus on each day, remembering that God's grace is sufficient for today. No matter where I go, I will always be the mother of a baby that died. And, that's sad. Remember...I'm the happy, go with the flow, "the sky is falling, but isn't it the most beautiful shade of blue" person. But, there's no escaping this. It's a part of my history and there are times when I just want to flee from it. Only I can't.

When I was pregnant with Lily, I feared the questions and comments I would get from cashiers, moms at the playground, waitresses, etc noticing my pregnant belly. Pregnancy is a time supposed to be filled with great anticipation and joy. How were the strangers supposed to know the sadness surrounding our pregnancy? Could I get around their comments and questions without fully answering? Because once I opened that door, I saw the awkwardness in their faces (what could one say?) and/or the compassionate tears in their understanding eyes. What was I supposed to say without making that person feel awful for asking or saying something in the first place?

In this "new normal", I didn't expect to be answering similarly leading questions. Now I worry about people asking me how many children I have (do I say 2 or 3...it's a little tricky). If someone see me out with our two boys, I often get... "oh, two boys...do you think you'll try for a girl?". (Ummm. Do I go there? Deep breath.) I haven't figured out a way to answer that question and not stun the other person. I don't want that person to feel awkward...I know their motivation is not to hurt me by asking what would now seem like such a rude question.

Another new normal is watching our boys grow through this loss. Evan, who I thought was sweetly oblivious, realized more than I gave him credit for. The other day, I was cleaning out our bottle/sippy cup shelf and placed a bottle on the stairs to go up into storage. Evan picked it up and asked me to fill it with water. I guessed he thought of it as a novelty and just wanted to try drinking from it. Well, after I filled it, I followed him upstairs and watched as he had a conversation with Lily's photo and tried to get her to drink the bottle. Justin, on the other hand, made his first family drawing without Lily. More bittersweet moments and proof that they are moving through the grieving process.

So, feeling like I needed an escape from this "new normal"...I was very much looking forward to a family vacation in the Bahamas in May. (My parents have been going at least once a year for the last 7 years and sometimes they take us along too!) The Atlantis is probably our most favorite vacation destination....it is a great mix of relaxation, fun, and education....for all ages. I was really looking forward to spending time with Craig and the boys and feeling a little closer to God in this beautiful paradise. But, wouldn't you know, it rained. It rained every single day we were there...that's never happened before. We still had a GREAT time (we swam through the rain...we were wet anyway)! But, it sure did mimic how I was feeling....no matter where I go, this rain/sadness follows me.

(Dear Lord, please cause me to remember that without the rain, there would be no rainbows?) Here are some of our rainbow moments from vacation:

I attended a women's tea party at church this spring. I sat at a table with both people I knew and didn't know. I was sharing a little about the playground plans and progress with the people I knew, when I saw the lightbulb go off on the expression of someone I didn't know. And she simply said, "You're Lily's mom".

(Lily's mom) I thought to myself. That is something to be proud of. I'm not just this mom whose lost a child. A picture of sadness. The white elephant in the room. No, I'm Lily's mom. She was a precious gift and at that moment I felt thankful to be the person God chose for her journey.

Rather than worrying about how to answer people's questions, I should be looking for opportunities to share Lily's life. I should be proud of her. I should be honored to tell Lily's story...His story.

Has it really been 2 months?

I know it's time to update when I start receiving emails asking me how we are doing. By the way, thank you so much for caring! I am sorry for not being more consistant with blogging. I guess I kind of took a break and let Lily's slideshow take main stage for awhile. I have continued to journal though. Below is an entry I wrote when two months had passed.

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Oh, I'm missing Lily so much today. I am so thankful we made the decision to carry her to term. No regrets there. There's just no way to describe the peace we have in choosing the road we chose. And, I'm still amazed we were gifted 5 days to hold and care for her. She was so precious and I'm glad I got to meet her. I know Lily is *living* in Heaven....I'd much rather have her here, but also realize that's just selfishness. It was clear she wasn't created for this world. And, I fully rejoice when I think about what a gift it will be to know her for all of eternity.


How is it that 2 months have passed since the day I held our baby girl in my arms? It just doesn't seem possible that time has moved on so fast. And, yet there are many moments when the whole event seems surreal....as in, "Did such a tragedy really happen in our life? Or, oh, that's right, that event has already happened."


Once the eternal optimist, now it seems moments of happiness are somewhat tainted. A college friend once said of me, "If someone told Jessica the sky was falling, she would say, Isn't it the most beautiful shade of blue?". Ahh, the days before "d-day" (diagnosis day) when smiling came easy.


Now, I find I have to control my thoughts away from doubt and anxiety. If my child has symptoms of a stomach virus, I wonder about long-term devastating illnesses. If the other one falls on the ice and hits his head, I think about concussions and comas. If my husband's flight gets changed and it's been more than 1.5hrs past when he's supposed to call, I turn on the news to see if any planes have gone down.


Have I become a pessimist? A realist? A worrywort? No, I understand it be just a 'stop' on the trainride of grief. "This too shall pass". The anxious thoughts do not alter my ability to participate in every day life, but it is certainly a different thought pattern from how I used to think. Anencephaly and other tragedies were stories from other people's lives. Not that I thought we were impervious to painful circumstances before Lily's diagnosis, but now they seem somehow more real...and possibly more likely.

On the inside, I'm feeling a little like "Debbie Downer" these days...hoping it doesn't show through too much. As "Sleepless in Seattle" said it, "I'm going to continue to get up every morning, breath in and out", and prayerfully go through the motions of life until one day I won't have to remind myself of all the blessings I have to be happy and thankful for...it will just come naturally to me again.

As we continue to go through these stages of grief, would you please continue to pray for us?

Photo Slideshow

Finally carved out some time to re-work Lily's Photo Slideshow and make it blog-acceptable.  Unfortunately, the video showed at her funeral service was several minutes longer and just too big to upload here.  This photo slideshow is also different in that the background music is "Lily's Song"....a very special song written and sung by our endearing Pastor, Phil Moser (I'll include some of the words below).  

May Lily's sweet life set your eyes on heaven; where she is living:

"Lily's Song" by Phil Moser

It's Christmas Time, we'll always remember

a baby born one day in December.

As God's love shined, revealed through His giving,

so this we know our Lily is living.

Like the lilies of the field, she's safe on heaven's shore.

Jesus Christ, who paid the price, holds her forevermore.

Before she felt the Lord's embrace, 

she was held in her mother's loving arms.

Before she saw her Savior's face, 

she was seen through her daddy's tear-filled eyes.

Before she heard the Lord's "well done", 

she was loved by her brother's tender smiles.

Before she entered heaven's gates, 

her soul touched the earth for just a while.

Loving and Missing Lily Grace

A week before our scheduled c-section date, I sat and imagined what that day might hold. How it would feel to see her, to hold her, to love her, and then to give her back to her creator. I could imagine no joy on that day......but, I was wrong.

Several days before our scheduled c-section date, 10-15 women from our church gathered with me in the quietness of a friend's living room for what I can best describe as a prayer shower. It was an evening filled with fellowship, tasty treats, thoughtful presents, and prayer. The encouragement and wisdom these women imparted helped to calm my anxiety and gave me a greater sense of peace and courage to take the next required step. One of my friends said her hope and prayer was that my fear and sorrow would subside enough for me to fully see the joy and blessings of our precious daughter.

On the way to the hospital, I told Craig I had made the decision to do just as my friend described. I put away as much of the fear and sorrow I could, decided to trust God for His faithfulness, and chose to look for the joy and blessings in what our day might hold.

Reminding myself..."God's grace is sufficient for today"

From the moment I heard (yes, heard her cries) and saw her and held her...I loved her more completely than I could have ever imagined. I looked at our Lily Grace and only saw the beauty in her creation. Her skin was so beautifully pink, silky soft, and she smelled so sweet. Her lips, well, they were a replica of mine I suppose, and we enjoyed putting on a little lip-gloss every now and then. Her fingers were delicately long, and she had nails long enough to warrant a little bit of girly nail polish (though we never did that).

We were amazed by her! With Lily's original diagnosis, we were told that ancephalic babies are unable to see, hear, move (other than small reflexes), or feel pain. It seemed apparent to us that she could do those things. She seemed to follow certain voices. She did not like when her eyes got covered with a hat or blanket prohibiting her from seeing. We loved when she would grasp our fingers with her hands (yes, reflexive), but she had other movements that seemed to be a bit greater than reflexes. As I got to know her more, I could tell when she was sleeping and relaxed vs. bothered by gas or uncomfortable. I didn't want to miss a moment with her. I didn't want to let her out of my arms. We took great pleasure in caring for her. I figured I could sleep later and be sad later...I just wanted to be happy in the moments during the time we were priviledged to have her with us. It felt like a giant blessing, a miracle of sorts to be blessed with time. And, it made my heart soar.

Lily's anomoly affected the top of her head and her left eye. Though severe, it wasn't something that turned us away from her. I guess we accepted her as she was. As long as she seemed content, we were content to care for her, love on her, and keep her with us. It wasn't until her eye started to really swell and the back of her anomoly started to ooze with irratation from rubbing against blankets that I started to feel selfish for wanting her to stay. Letting her go was terribly heartwrenching. It was so painful watching her struggle her last several hours of life that I just kept praying her on to the safer, more comfortable place I knew was waiting for her.

Grieving is a confusing process for me right now. I've been trying to find and put words to describe how I am feeling. There is an amazing amount of peace in knowing we submitted to God's plan. There is an abundant amount of joy in knowing we were blessed with 5 1/2 precious days with our beautiful baby girl. And, yet there is still a deep bit of saddness in missing her presence with us and in thoughts of 'what could have been'. So, these feelings of peace, joy, and saddness intermingle and come and go like the waves of the ocean. Some waves seem to knock me over and take my breath away. Other waves I am able to float on top, where the joy and saddness to seem to balance each other out. And, there are those occasional waves of joy that are as exhilirating as riding a wave to shore. The waves stir and mix these emotions, just as the sand and shells release from the ocean floor and go in and out with the tide.

It's interesting how people grieve differently and at different times. Craig seems to tear up when running his fingers over her hand mold or watching her slideshow of pictures or listening to Justin pray that "Lily had a great Christmas in Heaven". These are the very things that bring joy to my heart. For me, the hurt doesn't come from remembering her. It comes when I realize how much I will miss her being a part of our family and watching her grow, play, learn, etc. Justin continues to fill our hearts with bittersweet moments. He asks about Lily every now and then, continues to spell her name, sings 'Lily's Song' over and over again, waves to her in Heaven, and says he misses her. His grieving seems to be done in very small bits and pieces. It doesn't seem overwhelming or behavior altering. Evan is still delightfully oblivious. He continues to bring laughter to our souls. When he sees pictures of Lily's feet, he says, "stinky feet!". Not at all true, but funny none the less.

I will post a slideshow of Lily's photos soon! Thank you for traveling this journey with us.

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.