Monday, August 31, 2009

Well Done, Emily: August 29,2009

Today our precious daughter, on her birthday, went home to be with the Lord.

Emily Jean was born at 3:16 pm (she weighed 3 lbs, 13 oz., 15"). Although we prayed for months for a live birth our Lord had other plans. She gave one last goodbye kick to Laura only minutes before her birth.

With anencephaly Emily couldn't think or reason
yet she was the one on that afternoon who understood.
Emily was blind but in that moment she beheld the face of Jesus.
Our daughter was deaf yet at that time she heard the voice of our Lord...

"Well done, Emily, my good and faithful servant."

Well done, Emily. Mommy and Daddy are proud of you, too.
We love you so much.

“Even though the fig trees have no blossoms, and there are no grapes on the vine; even though the olive crop fails, and the fields lie empty and barren; even though the flocks die in the fields, and the cattle barns are empty, yet I will rejoice in the Lord! I will be joyful in the God of my salvation. The Sovereign Lord is my strength! He will make me as surefooted as a deer and bring me safely over the mountains.”

Habakkuk 3:17-19

Sunday, August 30, 2009

The Time is Getting Closer: July 15, 2009

It has been several weeks since we have updated you on our beautiful daughter, Emily, and our journey with anencephaly. In many ways day-to-day life has felt routine, yet it is the quiet pockets of the day or those moments before we sleep that our minds drift and dream of Emily and our heart’s hurt. There are other times we are simply in disbelief any of this is actually happening, especially when everything with Laura’s pregnancy appears normal… until recently.

Over these past two weeks Laura has been experiencing contractions and rapidly increasing in size, a sign that the end is coming near. The size increase is due to Emily not being able to swallow and, as a result, the amniotic fluid quickly builds at the end of the pregnancy. The consequence is premature labor; although Emily is not due until September 18 all signs point to her arrival being in only 2-4 weeks.

So, Laura and I are quickly making arrangements for Emily’s arrival. Laura finished a knitted a hat and blanket and Ryan’s mom made a beautiful burial dress for Emily. We are working on burial arrangements as well as setting up details for organ donation. Friends rented a Doppler for us to hear Emily’s heartbeat at home; the kids love to “play doctor” and hunt for her heartbeat. We are filming everything we can, reading books, journaling, praying, crying at times, and overall doing our best to honor God through this experience.

We continue to be so thankful to you for your prayers and encouragement during this time. We will continue to keep you posted. Much love from us all,

Our Journey Continues: May 11, 2009

Laura and I want to thank you for the tremendous outpouring of love and encouragement over this past week. It has been more meaningful than you will ever know and we can tell there are many that are interceding on our behalf. Thank you.

As an update, last Friday (May 8) was Laura’s first appointment at University Hospital. Laura’s appointment began with another ultrasound. Once again it was clear that our baby has anencephaly. What is a blessing is that we learned that we are having a little girl! She is beautiful. We have decided to name her Emily Jean, which means “Excelling in Grace from God” (Jean is also Laura’s middle name). She is our gift from the Lord, one we do not deserve and are so thankful for. It was so special to watch her move during the ultrasound; she had both arms up above her eyebrows, almost as if to block from view what was missing. The tech was kind as she printed off several pictures for us to take home.

After the ultrasound we met with a doctor. This time was such an answer to prayer as she was very supportive of our desire to continue the pregnancy. We also found out that either the baby moved or the previous diagnosis of placenta previa was wrong; Laura is no longer required to have a C-Section. Also our little girl has no deformities (aside from the anencephaly), which indicates that organ donation could be a possibility. We took time to ask the doctor lots of questions, which was helpful.

Finally, we met with a very kind lady named Nancy English in a nearby consulting room. It is her role to walk with us through these next several months as a coach. She provided Laura a journal and lots of information about grief and how to get through this experience.

So, what is next in this process? From a medical standpoint, not too much is ahead. Laura will have a routine pre-natal check-up in four weeks and then another ultrasound four weeks after that. What will be more difficult is beginning the process of putting together a birth plan (assuming Emily is born alive how we would like the time we get with her to go), funeral arrangements, and any other preparations that will help us make this time as meaningful and memorable as possible.

As I close this letter and reflect on these past 11 days (and it has been a whirlwind!) what is clear is that even though I haven’t seen my daughter (except by ultrasound), held her, or heard even a peep from her lips yet, she has changed my life. It has been amazing how this burning experience has made so amazingly clear what is really important.

I sometimes wonder when things will get back to “normal” again (I think what I’m really asking is “When will this not hurt anymore?”), but I can’t help but think this experience will redefine “normal” for us. And, if normal means going back to being the person I was, even two weeks ago, and tossing out the beautiful lessons the Lord has shown me, then I don’t want “normal.” I want to live above normal with passion and focus on what really matters: loving Christ with everything I have, loving my family, and serving where God allows.

The Lord has used my little Emily to change my life and I pray He would give me the opportunity, even for just a few moments to tell her. She is our excellent gift and we are so thankful for her. Thanks to my sweet daughter I will never be the same person.

Thank you again for your encouragement. We will keep you posted as this journey continues to unfold. We love you all,


1. Laura’s health in this process.

2. Strength for the day, especially in moving forward with making decisions and arrangements.

3. That Emily would make it full-term and have a live birth so we could spend time with her.

When We First Heard: May 6, 2009

I hope each of you are well and enjoying these beautiful spring days filled with new life. Today Laura and I celebrate our 9th anniversary- where has the time gone? I am so thankful for her and the gift that she is to me, as well as to Sean, Megan, and Alayna.

Many of you know about the new journey the Lord has brought us to and we want to take a moment to give you an update (some of you may not be aware of the situation with our unborn baby that was recently diagnosed with anencephaly; at the end of this email is a bit of the back story to fill you in).

On Monday (May 4) Laura spoke with her doctor and learned more details from the ultrasound. It was confirmed that our baby has a severe case of anencephaly; there is no trace of a brain (other than the brain stem). In addition, we learned that Laura has placenta previa, which means that our baby implanted over the cervix. If the baby does not move (which sometimes happens) then Laura will have no choice but to have a C-Section at some point in the future. The good news is that that our baby has a well developed heart, which may be a blessing as we explore the possibility organ donation.

Laura and I have firmly decided against terminating this pregnancy and intend to continue to whatever ending the Lord chooses. We know God always honors those who choose life and, as long as Laura is not in danger, we intend to allow the Lord to decide when to take this precious child home to be with Him. Laura’s care has been moved to a new team of doctors at University Hospital (which we will meet with this Friday). Please pray with us that they are supportive of our decision and that we can avoid any need to be graciously stubborn with our desire.

We are hurting for our loss and often feel deep disappointment, but we are also experiencing the peace that passes understanding. Thank you for praying for us. We are eager to see how the Lord works in this situation now and in the weeks to come. We are so appreciative for the emails, calls, cards, gifts on the front porch, babysitting, meals, and most of all prayers from so many of you- you are amazing!

So, what is next? As I mentioned Laura has a doctor’s appointment on Friday, May 8. We expect they will do another ultrasound and we have several questions to ask. It is also important to us to find out the gender and name our baby. Laura has plans to make the baby a hat and a blanket. I want to begin to collect as many ultrasound pictures as I can. We also hope to meet with a group at the hospital called Fetal Care who will help us through the process of setting up of funeral arrangements.

Thank you so much for your prayers and encouragement; you are a gift to us. We will keep you posted as we continue this journey. We love you all.

The Back Story…

Some of you may be unaware that we are even expecting another baby! We are excited and so thankful to the Lord for this addition to our family, especially after losing baby “Charlie” (named by the kids) to a miscarriage in the second trimester a year ago. When we found out Laura was pregnant we were a bit gun-shy to announce the news to the world; we needed to hear that little heartbeat first. Sometime around the 14th week of Laura’s pregnancy she was relieved to hear a strong racing heartbeat for the first time and we began to share the news. Please forgive us if we have not been able to share any of this with you until now.

Last Friday (May 1) Laura had her 20-week ultrasound appointment. In our excitement we pulled Sean out of school so all the kids could be in the room to see their new brother or sister. The ultrasound seemed routine as the tech pointed out various parts of our baby and took measurements. Then, to our surprise she excused herself from the room and minutes later returned with a doctor. We asked if something was wrong, but they were silent. After a few minutes of looking around the doctor turned the monitor away and flipped on the lights- our hearts sank as we new something was horribly wrong.

The doctor shared that our baby has a very rare condition called anencephaly. He explained that our baby has a brain stem (which explains the beating heart), but does not have a brain or a major portion of the skull. This condition is 100% fatal. These words stunned us, and our kids, still in the room, sat there confused at what was going on. Immediately, Laura was sent to her doctor across town, who outlined our two basic options: terminate the pregnancy immediately (stats indicate 95% of women choose this option) or continue the pregnancy. They gave us the weekend to think things over and try to come to some decision.

We spent the weekend in shock trying to come to grips with what we just learned. We talked, prayed, cried, read our Bibles, and walked around the house in a fog. Finally, by Sunday evening we were able to begin to get out Laura’s old medical books and get on the Internet to study anencephaly to learn more about this condition.

One passage that has been a tremendous encouragement to us these past few days is from Luke 1:38. After Gabriel announced the plan of the birth of the Messiah, Jesus Christ, to Mary (which must have been quite the shock) her response was simply, “I am the Lord’s servant… may it be to me as you have said.” Her beautiful expression of surrender to the Lord and His plan has been our encouragement: it is our desire to trust Christ throughout this new journey and worship Him through surrender. This morning (May 6) I (Ryan) was able to feel a kick from our baby for the first time- clearly he or she is not quitting and neither are we. This situation is not what we want or what we would choose but we surrender it to the Lord and look forward to seeing how He works in this difficult time.