How Extra Are We? A Brief History of Our Parenting Journey

Often on Social Media I’ll have a new person encounter my profile and make assumptions about our family based on the most recent post I’ve done. This makes PERFECT sense and I’m  in no way mad at these new friends. I get it, our family is… a little extra. In an effort to put ur family’s story in one place, beginning to end, I’ve written out the following timeline. I think this will serve to show new (and old) friends why we have so many passions and so many reasons to spread awareness.

Our Very Atypical Parenting Journey

April 2015: I was 20 weeks pregnant with Rosie and she received two diagnoses on the same day- Down syndrome and congenital heart defect (AV Canal). At the time we lived in China, but I was here in the States for the diagnoses. Andrew came home from China about a month later.

August 13, 2015: Rosie is born! Six days in the NICU and we got to bring her home, which was a miracle in and of itself. We were home for six weeks before being admitted again for heart failure.

November 2015: A very hard month. After open heart surgery #1, Rosie seemed to be doing well in recovery, and declined quickly. She went into cardiac arrest, requiring CPR and ECMO, which led to a brain bleed a week later, requiring emergency surgery. We then spent several weeks trying to understand what to do next, allowing her brain to recover from the bleed, but needing another heart surgery. The holidays passed this way. 

January 2016: Open heart surgery #2 to repair a leaky mitral valve from CPR. She’d been intubated for over 60 days at that point. After a very rough recovery, she was able to extubate successfully and continue recovering. 

March 5, 2016: HOME! After months in the CVICU at Arkansas Children’s Hospital, we went home with our girl. She was on high doses of oxygen and had 14 prescription medications. 

March 12, 2016: Diagnosed with Infantile Spasms, a rare seizure disorder. These continued for months and are called a catastrophic diagnosis. This was the beginning of another very hard season. 

June 2016: Diagnosed with Craniosynostosis, a rare disorder in which the plates of the skull fuse prematurely. Scheduled surgery to reconstruct Rosie’s skull. 

July 1, 2016: Last Infantile Spasm. Hallelujah Chorus!

September 12, 2016: Cranial Vault Remodeling. This was a 13-hour surgery to reconstruct Rosie’s skull. She spent 12 days in the hospital and was able to come home without issues. 

August 13, 2017: Rosie turns 2! With more distance from major issues, we began thinking and praying about growing our family through adoption. We reached out to a few friends to talk about how to go about it. We continue to feel compelled to adopt another child with special needs. 

November 2017: I receive a message connecting me with Beau’s first mom. We begin talking about the possibility of her and Beau’s first dad placing him for adoption with us. Within a week we were discussing legal matters and had retained an attorney. We began learning about open adoption and the importance of openness for the adoptee. 

December 16-18, 2017: We meet our son for the first time. We bring him home in time for Christmas.

January 4, 2018: Adoption is finalized and our son becomes Beau Isaac Sweatman. 

ALL OF 2018: We have been learning to be a family of four, watching Rosie and Beau become brother and sister. Each month there has been new evidence of their bond as siblings. 

Today Rosie’s health is good, all things considered. We are still figuring out how to control some seizures that have come up. Beau is in preschool and developing like crazy. We continue to have a open adoption with his first family.

We are completely and utterly in love with our children and couldn’t be more proud of them both. Talk about a whirlwind, right?

Always feel free to ask any questions you might have about our family. Also, about adoption or any diagnoses you see listed here. We have a lot to share and advocate for and we are grateful for the opportunity to spread awareness. 

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About Ali

Hey there! I’m Allison, redemption seeker, real food enthusiast, and creative entrepreneur. My hope is that in this space you experience stories that inspire, recipes that nourish, and practical tips to see your life redeemed and thriving.

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