Prepare for the worst, hope (pray) for the best

• I was the type of person that needed to have a plan and know every last detail; give me all of the lists, spreadsheets, itineraries, etc.  If there is one thing Abigail has taught me, it is that I am not in control, despite my best efforts for planning.  I didn't come to this realization without a fight, but I can confidently say I no longer identify myself as a planner, rather a "preparer".

If you are experiencing "loss of control" with your prenatal diagnosis, you are not alone.  It's a lonely and cold place to be; being robbed of your future plans as a family and left with more questions than answers.  

No parent wants to think about planning a funeral/celebration of life for their baby (let alone one that hasn't even been born).  It is the most gut wrenching and soul crushing feeling.  One thing Brian and I were reminded of in the trisomy community was "plan for the worst, hope for the best"; and so, we did. 

I have to admit, I am thankful to have had that advice, despite all of the emotions that went with it.  It allowed me to prepare (not plan) and be extra thoughtful with all aspects of life and death without feeling pressured or rushed to make decisions on the spot.

Be informed; Be prepared.  Everyone will tell you "stay off Google"...but let's be honest, that's a rabbit hole you've likely already been down (we are guilty of it too!).  I say, it's okay to Google.  Just keep in mind, no two babies are the same; as no two prenatal diagnoses will have the same outcome.  Your baby is fearfully and wonderfully made.  Google can be a great resource, but you may discover the dark side of it as well.

In search of your next steps, I will provide you with the way Brian and I prepared for our journey with Abigail (as best we could).  Our hope is that you will have a better sense of "where to start", or at least have food for thought.  We pray for peace over your soul.

1.  Determine what funeral home you will use.  Have a phone conversation with a Funeral Director to discuss burial or cremation services and associated costs.  

• The decision of cremation vs. burial is a private decision.  Some influencing factors for burial may be if you have a family cemetery, whether or not you plan to move away in the future, if you would like a "sacred" place for visiting your baby, or even your religious beliefs.  We chose cremation for Abigail, as we do not have a family cemetery.  More so, I couldn't bare the thought of her being "alone" and wanted her presence in our home.  We also had some beautiful heart pendants and a larger heart made with her ashes infused in them.
• Some states allow you to transport a deceased body from the hospital to the funeral home.  If this is something you are interested in, it is likely your Funeral Director would have knowledge on this topic.  This would be helpful information to include in your birth plan as not all medical staff are aware this is an option (when I mentioned this was something we were considering, our medical staff were very surprised and had to look into this).
• Some states do not have laws that prohibit home burials.  Please be sure to research state laws and zoning laws before burying your baby on private land. 

2.  Research hospitals you may deliver at and the level of their Neonatal Intensive Care Unit (NICU), doctors that would be willing to perform any needed surgeries for your baby, and the reputation of "friendliness" towards your prenatal diagnosis .

• Connect with the hospital social worker.  The social worker can act as a liaison and assist with scheduling meetings with doctors and may have additional resources for you to utilize.
• Although the severity of prenatal diagnoses can vary, it is important to feel supported by your care team.  In our experience, with Trisomy 18 (being labeled "not compatible with life"), we did feel discriminated against at times.  Some doctors feel it is against their ethical oath to provide full intervention to "prolong the inevitable".  If you experience this, please continue to seek doctors or hospitals that will support you and your baby.  Some families choose to travel out-state to receive care for their baby.  You are the voice and advocate for your baby, follow your heart and do not be afraid to ask for second opinions.  Stand your ground.
• Establish a list of questions to ask the care team.  Some examples of questions may include: How soon after birth would they perform an echocardiogram.  Are they willing perform a heart surgery? How soon after birth will they perform a brain MRI/CT scan? What is their stance/approach to administering pain relief, such a morphine, which may increase apnea episodes?  

3.  Create a birth plan. You can find out more information and view Abigail's birth plan here.

•  Creating a birth plan is a crucial step in preparing for your baby with a life-limiting prenatal diagnosis.  A birth plan will allow for streamlined communication on your wishes and expectations between you and your care team.   A birth plan does not "lock you in place" and you have the freedom to change your mind whenever you feel it is necessary. 

4. Preparing your hospital bag and items to make memories.  You can find out more information on items to pack for a hospital bag and to create special memories here.

• As difficult as it is, having the opportunity to be mindful and present in how you want to make memories with your baby is truly a blessing in disguise.