Some people dream of angels,
we held one in our arms.

 
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Imagine our shock and surprise when after a 6 week follow-up ultrasound the technician told us there were two heartbeats!!  Despite being healthy and fit, my pregnancy was riddled with problems from the start.  I had spotting at only 5 weeks which resulted in a trip to the ER and an ultrasound.  The spotting lasted until about 10 weeks but then we discovered that baby B, Eden was falling behind in her growth.  It was confirmed that she had IUGR (inter-uterine growth restriction) and had a great discordance from baby A, Reagan.  During this time I also began to have pregnancy induced hypertension (PIH) and a shortened cervix.  I was monitored twice a week at my perinatologists office until week 17 when I was told to take it easy.  The next week with my blood pressure rising I was told that I had to be put on strict bedrest.  At 24 weeks I was diagnosed with pre-eclampsia and was “invited” to be inpatient at Abbott Northwestern Hospital.  

I spent 4 weeks inpatient praying and hoping that I would stay pregnant and our babies would continue to grow.  On August 1, 2010 I called my husband, while on his 50 mile training bike ride to say he might want to start to head towards home as the nurses were getting nervous about my blood pressure.  He raced home literally and was by my side before I was transferred to Labor & Delivery.  Once in L&D I was told that if my blood pressure didn’t lower and my pre-eclampsia got any worse that I would be delivering.  I made it through August 1, 2010 and transferred back to my home in antepartum.  

On August 2, 2010 just as Scott and I were cuddling up to watch a movie around 1 pm, during a slight break in his day, my perinatologist arrived saying that my most recent bloodwork showed HELLP syndrome and that my severe eclampsia warranted immediate delivery of our tiny girls.  Through tears I begged and pleaded to keep them in so that they could grow more.  Instead, I was prepped for my c-section.  Minutes before my already emergent c-section I started to have extreme pain in my back and severe contractions.  My delivery team got very nervous and rushed me into the OR.  Once my perinatologist started my c-section she soon learned why I had such extreme pain.  In addition to all my other pregnancy issues, I also had a placental abruption.  There was no doubt that our girls lives and my life were in great danger.

Our tiny girls were born Reagan Avery weighing 2 lbs 5 oz and Eden Bryn a mere 1 lb ½ oz. They immediately stole our hearts despite their itty bitty sizes.  Our girls struggled for every single breath they took.  Soon we realized that our girls were not typical preemies who would need simple growing and feeding help.  They needed more support because both were diagnosed with brochopulmonary dysplasia.  Additionally Eden was diagnosed with pulmonary hypertension. She was on multiple medications to control the PH but she continued to have up’s and down’s.  The emotional roller coaster was tremendously difficult.  Reagan made progress and stole our hearts with her cuteness and smile.  Eden continued to get sicker.  Eden had these beautiful intense eyes and wanted to take in everything around her.  You couldn’t look at her and not fall in love with her.  Everyone who met Eden felt something special from her.  

In March 2011 Eden’s condition was dire and she had a cardiac catherization.  Our only hope for Eden was a life-saving double lung transplant at Texas Children’s Hospital.  Eden and I transferred to TCH on March 22, 2011.  This was the longest flight of my life as I watched Eden need continuous bagging because she wouldn’t tolerate the transport ventilator.  The flight was very difficult for her and when we arrived she was treated for heart failure.  When Eden’s condition became worse yet I called Scott and told him to board any plane regardless of cost and get to Houston as soon as possible.  Scott had to make arrangements for Reagan but was in Houston by 7:00 pm on March 29, 2011.  On March 30, 2011 we lost our sweet Eden, she passed away in our arms.  Her battle was much too difficult and she fought as long and hard as she could.  She was the most beautiful, perfect baby and we love her more than anything in the world. 

We chose to honor Eden’s life by creating this non-profit to support other families going through the journey of being in the NICU. We have big plans for Eden’s Garden and have more passion for this cause than anyone.  

Reagan is our amazing, fun, energetic, beautiful toddler.  She brings us so much joy and every time I look at her I am amazed.  She is healthy, strong and developing appropriately.  Her journey hasn’t been easy- she came home on high flow oxygen, multiple medications and a feeding tube.  Through months of therapy and hard work Reagan is just like any other toddler.  We love her more than anything in the world.    

Find Eden’s Garden on Facebook or follow us on Twitter #edensgardenmn.

- Amanda