Fear Not

At the beginning of the week my wonderful friend Brooke sent me a book in the mail. I met Brooke online on a message board for mommy's of babies with anencephaly. E-mailing back and forth with Brooke has been such a blessing for me. It is so good to talk to someone else who is going through the exact same thing. The book that she sent me is called I Will Carry You by Angie Smith. It is the story of Angie's daughter Audrey Caroline who was given a fatal prenatal diagnosis. It is a wonderful, inspiring book. Angie also has a blog called Bring The Rain if anyone would like to read her story. I was reading this book yesterday morning after my post on fear Tuesday evening. I came across a verse in the book that spoke directly to me.

Do not be anxious about anything,

but in everything, by prayer and petition,

with thanksgiving, present your request to God.

And the peace of God, which transcends all understanding,

will guard your hearts and your minds in Christ Jesus.

Philippians 4:6-7

It's amazing how God sends us just what we need, right when we need it. :) It let me know that he is still here with us on this journey. And he will be there on the day we say hello and goodbye.

Fear

My biggest fear is of the unknown. Will she be born alive? What will she look like? How long will we have with her? Will the end be peaceful, or violent and scary? I have so many questions that no one has the answers to.

All I can do is pray and trust that God will see us through this. But that is so hard to do sometimes. I am such a control freak. I like to know exactly what is going to happen so I can prepare for it. But as much as I have tried there is no preparing for your child to die. I have done everything that I can. I have prepared all of the physical, material things for her birth but there is no way I can prepare for the emotional part of it. How is it going to feel to see her? How is it going to feel to lose her? These things run through my mind all day long. How long will it take before I feel normal again? Will I ever feel normal again?

Will we always feel like something is missing? I just keep thinking how every time we take a family photograph, for the rest of our lives,that our whole family won't be there. And on Lily's wedding day will I look up at the alter and be saddened by the fact that Ella isn't standing up there next to Lilah as a bridesmaid? Our family will never again be whole. How do we recover from this? Is that even possible?

Only God knows the answers to these questions. He has know this was going to come to pass since before I was born. In some ways that is a comfort to me, to know that this is all part of his plan. Please continue to keep us in your prayers. The hardest part is still to come.

Birth Plan Part 2

As I have spent the past couple of weeks trying to put together my birth plan I have read the birth plan's of several other parents who have been given a fatal prenatal diagnosis. It is only because I was able to read their birth plans that I am able to come up with one of my own. So I thought it might be helpful to someone if I posted mine. I can't promise that this is the final draft but here is what I have so far:

Birth Plan

Comfort Care Plan

For Ella Joy Roth

August 11, 2010

As Ella's parents, it is our greatest wish to be able to cherish every moment we have with our baby, in a loving and caring environment. We have compiled this list of requests and wishes regarding her care in order to make this experience as easy as possible for all involved. Our main goals are to give Ella the best chance at a live birth and to spend as much quality time with her as possible. Our wishes are as follows:

• We DO wish to have a sign placed on our door that designates what type of situation Ella's birth is. We DO NOT wish to have extraneous staff entering our room without first speaking to our nurse (i.e. housekeeping, dietary).
• We DO NOT wish to have continuous fetal monitoring during labor and delivery. Periodic monitoring of heart tones is preferred.
• We DO NOT want to have my water broken at anytime. Keeping the membranes intact will protect Ella's head and might make a live birth more likely.
• When Ella is born, we would like her wrapped in a blanket and a cap placed on her head and immediately handed to Courtney. If Courtney is unable to hold Ella, we would like her handed to Jacob. We wish to cherish all the time we have with her. Every second counts.
• We DO wish to have routine care for any newborn such as having her nose and mouth suctioned with a bulb and drying her quickly. We request only temporary assistance to initiate Ella's breathing.
• We DO NOT wish any life saving intervention on Ella's behalf. The focus should be on care and comfort.
• We anticipate Ella will be born with a large opening to her occipital area and neural tissue will be exposed. If she is holding her own, we would like a dressing placed on any open area. We would prefer it to be dressed with saline or Vaseline gauze, and then an outer layer of gauze, whatever works best.
• We DO NOT want Ella taken from the delivery room at any time, by any person, for any reason. We do not want our precious time with her to be limited.
• We DO NOT wish to have any routine admission medications given, such as erythromycin ointment, or Vitamin K, nor do we want her blood sugar monitored.
• We DO NOT wish to have a nasogastric tube inserted in order to feed Ella. Courtney will decide if she wants to nurse Ella after she is born, if she is able. If Ella lives long enough to require nutrition but cannot eat by mouth we will discuss it with the doctor at that time.
• In the event that Ella does not die immediately, or soon after birth, we may wish to consider having an IV inserted and buff-capped for the administration of pain medication. We wish to make Ella's time on earth as pain-free and comfortable as possible.
• In the event Ella is experiencing severe seizures and seems uncomfortable or in pain we may wish to consider the administration of anti-seizure medication.
• We DO want the nursing staff to weigh and measure Ella when we request it. Should we forget to request it, please do it prior to her leaving the hospital.
• We DO request that Dad be allowed to give Ella her first bath.
• We DO request that Mom be allowed to dress Ella in her own clothes. We DO NOT want these clothes to be removed at any point or by any person other than her parents. Ella is to be wearing these clothes when she goes to the mortuary.
• We realize that Ella will look different physically. We hope everyone can see her for who she is, our beautiful little baby. She will be greatly missed and never forgotten.
• We DO wish to allow our family members and friends to visit as we deem appropriate. Please DO NOT allow anyone in our room without talking to us first. We DO wish to bring our three young children, ages 5, 4, and 2 to meet their sister and spend time with her. We ask your assistance in keeping them updated as we request it.
• We have contacted Now I Lay Me Down to Sleep, a bereavement organization, and arranged for a photographer to come to the hospital and take professional photos of our baby. We ask that you accommodate them in any way that is helpful. Their contact information is:
• We DO wish to be with Ella and holding her at the time of her death.
• We DO NOT want Ella to go to the morgue at anytime. We DO request the hospital contact the funeral home directly when we are ready to say goodbye to Ella. We wish for her to be picked up directly from us or for her to be taken by our nurse from us. Our funeral home can be contacted at:
• We DO wish to have as many keepsakes and memento's as possible. Please save the following items for us to take home: the bassinet card, hats, baby blanket, any photographs taken by the hospital, hospital bracelet and cord clamp, hand and footprints, molds of hands and feet (we have kits with us), lock of hair if possible, clothing Ella may have worn, anything else you think we may want to have.
• If any caregiver has a suggestion or idea that you think may be helpful, please share it with us, as there are many things we haven't thought of.

Thank you for being a partner in our baby's birth. It is only in light of her condition that we have chosen to provide a birth plan. We know your are a competent, compassionate group of people. Please be patient with us and don't mind if we change our minds at any time. We don't know how to do this sad thing and are learning as we go. Thank you in advance for sharing in this experience with us and helping us to make as many memories as possible with our daughter while in your care.

Jacob and Courtney Roth

Birth Plan

I finally took the time today and sat down and wrote out a birth plan for Ella's birth. Normally during labor I am a fly by the seat of my pants kind of girl but being that this is the only time we are going to have with her I want to make sure everything goes off without a hitch. Luckily I didn't have to come up with it on my own. I followed the birth plan from a wonderful organization called String of Pearls. It is an organization that helps parents deal with the passing of their babies. Laura, the founder of the organization, also sent me a wonderful package filled with items to make keepsakes for Ella. There is a plaster kit to make 3D hand and foot molds,a Christmas ornament to put her hand and footprints on, clay to make hand and footprints with, white sage and wild mint tea to help decrease my milk supply,and Cabo Creme to help with engorgement. There was also a journal, a photo album, and a book on grief. I am so thankful for Laura and String of Pearls for all of the kindness they have shown me! If you have time please read Pearl's story at www.stringofpearlsonline.org .

My birth plan is not so much a plan for the birth but a comfort care plan for after Ella is born. We want to make sure that we have as much time with her as possible but also that she doesn't suffer or feel any pain. I was a little reluctant to sit down and write it all out but I feel much better knowing that it is done. Should she come early we are prepared and the doctor's and nurses will know just what we want this birth experience to be. I feel the need to have everything ready just in case. I have bought two little preemie outfits so if she comes early she will have something cute to wear. I have also ordered her a personalized blanket to keep her warm in the hospital. I do still need to find her a cute little hat as I know this will be her most important accessory!

I just want to finish with a passage of scripture that has been on my mind.

For you created my inmost being;
you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,

your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Psalm 139:13-16