Tag Archives: AVSD

HOME. And My Musings on Down syndrome

It was a day just like any other in the NICU, when the neonatologist turned to me during rounds and asked, “So do you want to take her home today?” Um, YES.

I called Scott in a panic, telling him Reggie was finally coming home TODAY, and he needed to come to the hospital so that we can pack up all of her stuff. I had to rush out to a special compounding pharmacy to get her heart medication filled, and when I returned the nurses had everything ready for her to bust out of the joint.

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Regina’s Arrival and NICU Life

So, this happened:


Therese Regina Bass was born on December 28th, 2016, at 8:35 in the morning, 37 weeks gestation, weighing in at 6 lbs 4 oz. Before she was born, we knew she had a pretty serious heart defect and were fairly certain she had Down syndrome. I took one look at her as they held her over the curtain and thought two things: 1) that she most certainly did have Down syndrome; and 2) that she was beautiful. Scott firmly maintains that she is our cutest newborn. If my other kids are reading this some day, I will state for the record that I think all my children are equally cute. But Reggie is pretty darn cute. 

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Meeting with the Heart Surgeon/Visit to the CICU

Heyyyyyyyy. Long time no blog. Things have been more or less the same, other than me having a couple break-downs and finally acknowledging to myself that I’m going to have to get some help. Having 2-3 doctors’ appointments a week and having to constantly find care for the girls while I attend the doctors’ appointments proved to be too great a strain. Seeing doctors for this baby girl is starting to seem like a full time job!  So, finding and interviewing potential nannies it is.

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Pondering all these things in my heart

I’m trying to decide whether it would have been better to be oblivious about Regina’s diagnoses until her birth, or have it the way it played out and fret about everything for 19-ish weeks. I guess this way is better. It might be more overwhelming to have all this dropped on our heads like a ton of bricks on the day of her delivery. I don’t know.

I have responded to the overwhelming feelings of anxiety for her by researching everything I can and joining every group that I find. Which, on the surface, sounds constructive, right? Instead of sitting around worrying, I can get up and do something! But, it hasn’t really proved helpful in practice. Turns out, Down syndrome has such a ridiculously wide spectrum of outcomes, it is impossible to predict where she will fall. Some are born perfectly healthy and can go home immediately, some have mild health issues and need a little time in the NICU, some have several serious health issues and spend months in the NICU. Some are born late, some are premature, some are born right near the due date. There is a higher risk of stillbirth and miscarriage. Some breastfeed straight out of the womb with no problems, some need help figuring out how to breastfeed, some take months to figure out how to breastfeed, some can never breastfeed, some need feeding tubes. I guess you get the idea of why I’m tearing my hair out. How can I possibly prepare with pretty much everything being up in the air?!!

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Joy

I feel like I have been remiss in my posts lately, because too many people have told me they have made them cry. As Christians, we are supposed to be a joyful people, so hopefully this post will seem more joyful. I will give it the old college try.  I really don’t want this blog to become a bummer, because we are even supposed to bear our sufferings joyfully. So mea culpa, I will try and do better. Unless you all were crying happy tears, in which case, carry on!

My OB called me yesterday with the results of the blood test. As I had expected, she told me the test results were positive for Trisomy 21, more commonly known as Down Syndrome. I know this is the part where I am supposed to say I cried and heard the news with a heavy heart, but the truth is, I didn’t. I just didn’t. I was relieved that it wasn’t a terminal diagnosis, and I felt grateful to know this information early so that Scott and I can go ahead and prepare. When I told Scott the news, he took it the same way that I did. Her little heart is what is first and foremost on our minds, and really the DS seems pretty trivial in comparison. There are plenty of resources and support out there for children with DS, and we know plenty of wonderful families with children with DS personally. So, I know this may sound strange to some people, but we really didn’t grieve the test results.

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A Name and a Diagnosis

First of all, thank you all so much for the overwhelming support and encouragement we have received after my last post. I get by with a little (A LOT OF) help from my friends. I am so honored and grateful that baby girl and we were benefitting from so many prayers.

Second of all, we decided on a name! We have never decided on a name this quickly and easily before. We usually agonize over it until practically the delivery. But I suggested to Scott one name for her, and Scott suggested the other, and we both loved each other’s suggestions. We will still be following our family tradition of calling her by her middle name, and her middle name is Regina. She is named after the Queen of Heaven, and I have dedicated her to Our Lady. Scott and I decided that her first name will be Matilde, named after my mother and grandmother. Matilde means “brave in battle,” so it seemed appropriate. It is good to have a name so that I can start praying for her by name.

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