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Juniper's Journey

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Juniper’s Journey:

After meeting in college (CSB/SJU!), Colin and I became best friends and fell in love. From the early stages of our relationship, it became clear that we wanted to spend the rest of our lives together. We got engaged in Alaska and had an amazing wedding nearly five years ago. We’ve been together for over ten years now. We’ve always dreamt that our life together would include children, and over two years ago, we started trying for our first child. That was a journey of its own...as many can attest to, we (naively) did not anticipate difficulty in conceiving a child. The morning after Thanksgiving in 2017, I was brushing my teeth and decided to take a pregnancy test. It was positive. Have you ever felt a joy so electric that it completely takes over every fiber of your being? This was that feeling, and that feeling continued to grow as baby grew too. At our 21-week anatomy scan, we found out that it’s a girl! Luckily, we had already agreed on the perfect name for our sweet summer daughter - Juniper.

The days following that scan turned our happiness and excitement into what can only be described as primal fear. We received a very unexpected call that we would need to have a follow-up appointment with the maternal fetal medicine clinic for a level 2 ultrasound, as they were not able to get images of all four chambers of her heart at the anatomy scan. (Cue panic.) What resulted from the level 2 ultrasound raised more specific concerns regarding June’s heart, including a suspected diagnosis of heterotaxy. (Cue confusion and more panic.) We were then referred to the pediatric cardiology team at the University of Minnesota Masonic Children’s Hospital, where a fetal echocardiogram revealed yet more details on Juniper’s congenital heart defects and provided us with a clearer pathway to treatment. The incredibly high quality of care we’ve been receiving at the University of Minnesota has helped bring some relief back into our lives; we know we are in great hands there.

From what Juniper’s care team can currently determine (in utero), she has several congenital heart defects specific to her condition including HLHS/single ventricle, VSD, ASD, malposition of the great arteries and pulmonary atresia, in addition to her stomach being on the right side of her body. Essentially, this means that she will need a series of surgeries in order to maintain function of her heart and other organs to be able to live out her life like she very much deserves to do. Currently, she is projected to have four heart surgeries throughout her life...the first of which will happen soon after she is born. Since success of the first surgery will be dependent on a multitude of assessments made at birth, we are looking at a lengthy first stay in the hospital for recovery time before we can take our daughter home.

The time we will both be able to spend with our new baby while she is in the NICU/CICU will be so important for many reasons; being present to make important medical decisions regarding her recovery and future outlook, gaining knowledge and skills to be able to care for her special needs in and out of the hospital, and of course, loving on her as much as is humanly possible.

We’ve wanted this beautiful baby for so long and we have been saving up the best we can, though we could never have anticipated our version of parenthood to look quite like this. Though I am fortunate enough to have qualified for 12 weeks of FMLA leave and can use what little sick time I’ve accrued in my first year of teaching, the remainder is all unpaid. Colin can use some hours he’s saved up to take some paid time off, but he has recently been informed of an unexpected transition in position which has resulted in a reduction of pay. I had intended to teach summer school, but following the advice of our care team, I will instead take these last few weeks of pregnancy to focus on my health. Colin will be working overtime as he can in the weeks left leading up to June’s birth to help supplement our sudden change in income. We are navigating it all the best we can given the cards we have been dealt, but we anticipate that being in the hospital for an undetermined amount of time will prove challenging in more ways than one.

During the months of my maternity leave following Juniper’s birth, we will undoubtedly face financial difficulty with bills coming in from all angles, month-to-month expenses on a single, reduced income, medical supplies and medications we will need when we make the transition home, hospital life (meals, parking, etc.), and very importantly, saving up for all of the above when we go through this yet again for future surgeries. We are being reminded, over and over again, that life never stops, even when you’re in desperate need of a pause button. If we could alleviate at least one of the difficulties our family will face in the uncertain times ahead, it could really help us adjust to our new normal in the long run, whenever that may be.

If you know us, you know that we’ve put off setting up this GoFundMe for quite some time. (Turns out it is really difficult to ask for help when you’d much rather give it than put yourself out there to receive it...especially when it involves financial support.) But, after a lot of encouragement and strong suggestion from our loved ones in light of recent events, we decided to open it up and accept any and all assistance offered to us.

Thank you for taking the time to read our story. We appreciate all of you.

So much love from our family to yours,

Chelsea and Colin Clark
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  • Beard Friend
    • $100
    • 3 yrs
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Organizer

Chelsea Clark
Organizer
Minneapolis, MN

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