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5/29 Perinatal Hospice

May 29, 2018 | 30 1/2 weeks

This morning I met with a volunteer from Journey to Remember, which is part of the Forever Footprints non-profit, which I found out about through String of Pearls, which I found out about through the ARPKD Angels Facebook group. The longer the Lord sustains this pregnancy, the more kind people and compassionate organizations He puts me in touch with. That is a rainbow of mercy in this rain of sorrow.

It is truly amazing to me how much support we are receiving from the community of families who have sadly walked this road before us. They know the grief, the pain, the scare of the unknown, the sting of death, and they want nothing more than to turn around and comfort others.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. 
1 Corinthians 1:3-4

Verse 5: For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ.

Suffering is a sad but real part of life. It is an unavoidable byproduct of the curse of sin. But where there is suffering, there is also an abundance of comfort promised in Christ. And that is exactly what I am receiving from these people/organizations whether they realize it or not.

This morning, we talked a lot about memory building while still pregnant and hospice care after birth. I've already had it in my heart to bond with this baby as much as possible, but today I learned of a few more ways I could better do that. I know that I will always remember the details of this pregnancy down to the months and days, especially since I am chronicling our story online here, but I also want my kids to remember as best as they can. I don't want them, years from now, to scratch their heads as they try to remember just exactly how old they were when this happened. The volunteer today gave me a few tips.
- take lots of pictures where my belly is showing so that we can remember how baby was growing inside of me
- talk to the kids about how baby is with us when we go on various outings. During this pregnancy, the kids and I went on a fantastic hike to to local waterfall. It was our first time going, it was strenuous but worth it, and baby was with us. Yesterday was Memorial Day, and we had the perfect park day with family. That was the Memorial Day that baby was with us. Last week, we participated in a homeschooling handicraft fair, and it rained on us, and Mommy was kind of miserable, and that was the handicraft fair that we'll always remember baby spent with us. Thinking back on all the places baby has gone with us and all the memories baby has been a part of in utero makes me smile and truly feel like this little one is a part of our family.

The volunteer who came by this morning also gave me a copy of the book, A Gift of Time, which introduced me to the concept of perinatal hospice. I didn't know there was a name for what we were trying to do. Finding these resources has been extremely helpful in guiding our decision-making regarding baby's birth. It is also helping us understand the difference between intervention via the intensive care unit (NICU) vs palliative comfort care (helping baby to live his/her best life possible). Hard decisions all around, but it helps to be informed and know what our options are.

We hope that our visit with the perinatologist Thursday will help us make the right decision between intervention and comfort care.


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