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.   : )