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.   : )