Carrying Cullen

A Journey of Life, Love, and Daily Blessings with Our Baby Boy

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Our Birth Plan

In thinking about the day Cullen would be born, Joe and I put a lot of thought into how we wanted to spend our possibly short and very precious time with him and our family.  There were so many possible variables, and me being a planner, it helped me to think through each scenario ahead of time and how we would want to handle it, as opposed to making emotional decisions in the moment.  I looked at a blog from another family who had faced the same diagnosis and situation as we did, and everything that their birth plan included.  I asked our nurse, Liz, the NICU doctor, and Dr. Tressler if it was okay if we put together a birth plan, as well.  They all warmly welcomed the idea and in fact, encouraged it.  They said it gave the doctors, nurses, and hospital staff an idea of how to handle Cullen's care and would help them to make that day a little easier for us and our families. 

So, we wrote a birth plan to include in our hospital file for the day Cullen was born.  It was difficult to think of the possible outcomes, and we knew in the moment, that day, things might change... our decisions might change from what we had written in the birth plan... but it helped prepare us in some way and think through  how we wanted to spend such a special day with Cullen.  We knew it wasn't a contract either, we didn't have to do exactly as we had written out... it was simply a guide.  It was a way to share with the hospital staff and our families why we chose to carry Cullen, what it meant to us to have the opportunity to meet him and what we asked for the day he was born to spend as much time with him as we could, with the opportunity to capture every memory.   

For any couple out there, that has been given a fatal diagnosis for their baby during pregnancy...whether it be anencephaly or anything else, as hard as it may be, I encourage you to think of writing a birth plan.  It gives you the opportunity to think ahead and not make emotional, quick decisions in the moment.  Those who are surrounding you will know what you wish for your baby and your family that day.  We even gave our moms copies, so they had all of the information if needed.  You can most certainly not truly "prepare" for what will happen when the day arrives, and how you will feel, but it's a small way to try to prepare for your baby's birth. 



Why we chose to carry Cullen full term:

The day we learned of Cullen’s anencephaly diagnosis was devastating, but termination was never an option in our minds.  We chose to carry Cullen because he is a gift from God, a beautiful blessing in our lives, and our baby boy.  He has a purpose and weight in this world.  We also wanted the opportunity to spend as much time with our son as possible and enjoy every minute we could with him.  Our hope was to give him the best possible chance of the longest life he could have.  Our Christian faith has played a major role in our decision and our journey, and we truly believe God can do all things.  We know we serve a miracle working God and choosing to go full term shows the Lord we put our trust in Him and believe a miracle could happen, even if that miracle isn't healing Cullen’s body.

Choosing to do a planned C-Section:

The C-Section is scheduled for October 30, 2013 at 9:30 am. 

Holly and Joe chose to have Cullen through a planned C-Section because most importantly it would hopefully provide the least amount of stress on baby Cullen, but also on Holly’s body and emotional state.  We are praying that a planned C-Section will give Cullen the best chance and that it will give us the most amount of time with him possible. 


Holly has never had a major surgery or procedure.  This is Joe and Holly’s first child, so they have never witnessed or experienced childbirth prior to baby Cullen.  So along with emotions of Cullen’s condition and the situation, Holly is anxious regarding the C-section.  Please explain to her how the C-section will be completed and how the spinal for procedure will be administered and any other important information she and Joe should know.

Holly and Joe would like their pastor, Nick Smith, to come back and pray with them before entering the procedure. 

During Procedure:

Please keep Holly and Joe informed of all medical experiences happening during the C-section. Please also keep any extensive pushing on baby Cullen's head as minimal as possible while taking him out of the uterus. 

Sometime during the procedure Holly and Joe would like to have a picture taken of them, and have someone go to the waiting room to show their family and give them an update to provide them some comfort, as well, if possible.  Holly will have a camera to give to Liz Schaeffer to take pictures. 

After Birth:

Please inform Holly and Joe immediately of Cullen’s birth and if he is born still or alive.

If Cullen is born still:

Please clean, wrap him, and put a beanie on his head.  We have caps to use and will have them in the operating room when he is born.  

Please hand him to Joe if he is able to hold him.

Holly would like to hold him as soon as she is able to.  Holly and Joe would like to have a picture taken of them the first time they hold baby Cullen.  Holly will have a camera to give to Liz Schaeffer to take picture.

Holly and Joe would like to have a doctor tell our family and friends if Cullen is born still, so Joe can stay with baby Cullen and Holly. 

Recovery Room:  We would like to request as private of a space as possible during this time, but understand it will be in direct relation to what else is going on in the OR that day. 

Once in the recovery room, Holly and Joe will have any family members that are comfortable come back to see and hold Cullen. 

We have a handprint and footprint mold kit we would like to do at some point. 


If Cullen is born alive with a short life span (minutes to hours):

No extraordinary means will be made to prolong Cullen’s life. Cullen will visit our Lord when it is his time.

You may perform standard respiratory suctioning efforts to clean his airways when he is first born. .

Please clean and wrap him.  We also feel that having Cullen’s head wrapped in a dressing (if needed) and a beanie would help him, as well as the rest of our family.  We have caps to use and will have them in the OR when he is born.    

Please hand him to Joe first, and Holly will hold him as soon as she is able to. 

Holly and Joe would like to have a picture taken of them the first time they hold baby Cullen.  Holly will have a camera to give to Liz Schaeffer to take picture.

Holly and Joe would like to have a doctor tell our family and friends if Cullen is born living, so Joe can stay with baby Cullen and Holly. 

Recovery Room:  We would like to request as private of a space as possible during this time, but understand it will be in direct relation to what else is going on in the OR that day. 

Once in recovery, when it’s time for Cullen to be bathed, Joe will make the decision to bath him or not himself.  We will have outfits and blankets for him to be dressed and wrapped up in.

We would like our photographers, Naomi Atkins and Nichole Wallace, to come back to the recovery room if possible to take a few photos and to prepare for taking pictures when our family walks in to see Cullen for the first time. 


We will be having family come back to the recovery room in this order if Cullen is still living.

First:  We would like Holly’s parents (Desi and Sherry Winters) and Joe’s parents (Jim and Donna Tusing) to come back

Second: We would like Holly’s brother and sister-in-law (Eric and Jessica Winters) and Joe’s brother and sister-in-law (Jimmy and Kim Tusing) to come back

Third:  We would like Joe’s grandparents (Richard and Doris Sankey) to come back.

Fourth: We would like any other friends and family that are present to come back if Cullen is doing well enough.


Once in a private room:

We would like to try to request a room secluded from other mothers and babies to prevent any disturbance to them from our family coming in and out of our room.

We would like some alone time with our photographers, Naomi Atkins and Nichole Wallace, in the room before the whole family is welcomed inside.  Once we feel we have the pictures we need, the rest of the family is welcome in and we would like to have pictures taken with them, as well. 

Cullen will not be put on monitors or hooked up to any tubes, but will be monitored periodically by nurses.

If Cullen is still doing okay after our immediate family sees him again, then more extended family and close friends are welcome to join us.  We can discuss with our immediate family at that time who is still present in the waiting room and who can come back. 

If longer life span proceeds:

If Cullen lives a couple of days, and it is time for Holly to be discharged from the hospital, depending on how Holly and Joe feel, along with what Dr. Tressler and the neonatologist say about Cullen’s health, they will decide then to either keep Cullen in the hospital or take him home. If Holly and Joe decide to take Cullen home, Hospice will be contacted by the hospital staff for the family.  The hospital staff will also help set up everything for home needs, as well as inform Holly, Joe and other family members on how to care for Cullen at home.

Upon Cullen's passing:
If there is any change to Cullen’s health while in the hospital, at any time, Holly and Joe would like to be informed as soon as it occurs. If there is a decrease in heartbeat or shortness of breath, Holly and Joe will hold Cullen upon his passing. They would also like privacy from other children, family and hospital staff at this time for their grieving process as parents, if possible.

Also upon Cullen's death, we would like Pastor Nick Smith notified and asked to join the family at the hospital for a time of prayer.

Holly and Joe will notify the hospital staff on when they would like the funeral home to come take Cullen's body.

Organ Donation:
Holly and Joe have chosen to have Cullen’s heart valves donated to the Gift of Life organization.  Hospital staff is to contact Lisa to inform her. 

Keepsakes for the family:

Holly and Joe ask that all armbands, name cards, and decorations be saved.  We would also like Cullen’s birth certificate, footprints and molds to go home with us. 

Important People and Phone Numbers for Cullen’s Birth:

Pastor: Nick Smith – Cell #        Home #

**we would like Nick to pray with us before going into the procedure

**we would like Nick to call in a pray chain at our church for us that morning

Photographer: Inspired and Enchanted Photography

Naomi - Cell #

Nichole – Cell #

((If they are not able to do pictures for us due to extenuating circumstances, we would like to have Now I Lay Me Down to Sleep contacted))

 Funeral Home: Brown’s Funeral Home


                        Phone #


Holly’s Mom: Sherry Winters – Cell #

Joe’s Mom: Donna Tusing – Cell # 

Holly’s Friend: Kelly Wadlinger – will write a post on Holly’s Blog the day of Cullen’s birth 


The day of Cullen's birth, things changed a little from our birth plan and we made decisions accordingly.  It was a beautiful, truly indescribable day, and we made the most of every minute, holding on to his every noise and every breath.  For those of you who may face the same as we did, please know you can do this. Don't be afraid.  The Lord will wrap His arms around you, provide you with His strength, and will bless your heart abundantly.  It is your precious child, who God gave you; and although small physically, has a great purpose in this life.  Your heart will be so full of love, it will be worth every tear you shed.  If we had not chosen to carry Cullen it would've robbed us of so many beautiful memories and moments, not only for us, but for our families and friends.  We would've never grown as much as we have in our faith, or made many of the amazing connections and relationships we now have in our lives.  Cullen was the greatest thing that has ever happened to us.

"Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand." - Isaiah 41:10


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Holly, I'm so proud of you and Joe. The time you took to write your birth plan was the best thing for you and Joe, but sharing it with others who may experience a similar diagnosis is a selfless and generous act. Cullen was so incredibly lucky to have you both as his parents, and those decisions you made during your time with him were brave, faithful, and wonderful.