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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The Thrill Ride that is the last few weeks of a Down syndrome pregnancy

I’ll be 36 weeks soon, and with my other pregnancies, that was about the time I started thinking of the baby as a more concrete than abstract concept, but still didn’t do much to prepare. What an eye-opener this pregnancy has been. For the last two weeks with this pregnancy, the medical routine has been drastically different. At 34 weeks, I started having weekly non stress tests (“NSTs”) at my OB’s office and biophysical profiles (“BPPs”) at my high risk OB’s office. Basically, I spend most of my week in a doctor’s office, trying hard not to fall asleep. It’s amazing how when you’re used to running around all day, if you change abruptly to sitting around all day you can’t seem to keep your eyes open. I feel like the resident octogenarian. The nurses are all, “So how many weeks are you-aaaaaand she’s asleep again.”

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Send Chocolate. Lots of It.

They say that the heyday of the mommy blogger has passed. Not sure what the kids are into these days instead. Snapchat? Youtube channels? Posts communicated entirely by GIFs? Video killed the blogging star? Well, here I still sit, plugging away at posts that probably contributed to killing this medium. Because there was never a party I wasn’t a day late and a dollar short for.

Yesterday, I had an appointment with the high risk OB, so I actually had to put on real pants, makeup, and do something with my hair other than knot it up in the back and pretend it doesn’t exist. I’m not as adept at doing all this since I’m carrying around this watermelon and I’m out of practice. Also, I have a hard time finding clothing that doesn’t make me want to die. Jeans give me contractions and underwire bras are like the seventh circle of hell since I always carry so high. Leggings don’t really count as pants, so I have to find a top long enough to cover some expansive real estate in the rear. And I’m always behind on the laundry. And the girls have all had colds. My standards are low, but not venturing out in public covered in snot stains low. Needless to say, getting dressed was taking me longer than expected as the three older girls were downstairs presumably eating their breakfasts and watching Daniel Tiger.

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The Stillness before the Plunge

Today, I am 28 weeks and 4 days pregnant with Regina. I only know this with that much precision because I went to see the high risk OB again today. We have been doing monthly ultrasounds to check on her and make sure she is not developing any other Down syndrome-related complications, and so far she has been looking great, thank God. Her growth is right on track, her digestive tract looks good, and my fluid levels are normal. Her heart defect is the same, of course, but right now it isn’t causing her any distress. My high risk OB says that given her growth and activity level, she looks like a happy baby. He told me babies that aren’t feeling well stop moving around as much, and instructed me to start nightly kick counts. If I don’t count 10 movements in 2 hours, then I call my OB immediately. Kick counts are particularly important for babies with Down syndrome because there is a higher risk of stillbirth associated with it.  Also because of the higher risk of stillbirth, I start doing these ultrasounds with the high risk OB weekly starting late next month as well as weekly non-stress tests with my regular OB. He advised that I have my hospital bag packed next month, just in case. He does not anticipate that I will deliver early unless some unexpected complications arise. However, when everyone in one of the numerous Down syndrome groups I joined was polled on when their babies came, almost every one had their babies between 29-38 weeks. Most of them were in the 35-37 week  range. That would make Regina my first Christmas/New Year baby. We shall see what happens. The longer she stays in there, the better, obviously.

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Stuff my kids think I can do while driving

Because I never intended this to be Regina’s medical blog, although I’m sure it’s going to seem like that sometimes. I do have four other kids, though! And they’re pretty insufferable  adorable.

My bulleted list of things my children think that I am capable of accomplishing while operating a moving vehicle:

  • Put their shoes on after they have “fallen” off of their feet and/or tie their shoelaces
  • Hand them snacks and drinks
  • Pick up a toy that they have dropped or their sister has stolen and return it to them
  • Keep their sister from putting her leg or arm on “my side”
  • Solve disputes with all of my idle threats (because I really won’t remember to put them in time out once we get back home and pulling the car over would entail that we be even more embarrassingly late than we already are)
  • Cloak the sun whenever it gets in their eyes
  • Make an intelligent and thought-provoking remark about every cloud, tree, building, and pet they see as we drive rapidly by them.
  • Drive faster than sports cars
  • Pass right through traffic and red lights like a ghost-mobile

I have been able to successfully pass the time in the car with them by telling them Bible stories in my best dramatic storyteller voice. However, it does give rise to some bizarre conversations later. So far, we have only made it through Genesis and Adam and Eve (Noah is next). I must have been describing the first marriage a bit too literally for them, because Ruth went up to my dad announcing that Scott and I “are one flesh.” Ruth then paused and conspiratorially asked Dad if he knew what the word “flesh” meant. Dad humored her by asking her what it meant and she swallowed hard in preparation for giving him the unpleasant news and intoned, “skin.” Needless to say, I had some ‘splaning to do.

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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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Some Difficult News

You know, I feel for the doctors who know that they are about to have to give parents or patients some troubling news. There we were, sitting in a pregnant (pun intended) silence as the perinatologist waved the ultrasound wand back and forth across my belly, looking at my baby’s heart from every possible angle. I felt like blurting out, “Ok, I know something is wrong. What is it?!” But instead we waited as the silence stretched out forever and I contented myself with praying.

First of all, the baby is a girl! Just call us the Bennets; although, quite frankly I don’t much like the idea of being Mrs. Bennet.  I promise not to call one of my daughters “the beautiful one” and try to force one of them to marry her cousin.

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