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The Dates that Leave Imprints in our Minds

August 26th, 2016. The day that we had our 20 week scan and the perinatologist broke the news to us that something was seriously wrong with our baby’s heart.

January 20, 2017. The day that Regina was finally discharged from the NICU, after 24 long days. She was not feeding by mouth at all.

Last Friday, the scheduler called from the children’s hospital to schedule Regina’s open heart surgery. We scheduled it for May 26, but that could change based on whether an emergency or a heart transplant pops up, or (God forbid) if Regina gets sick. I have no doubt in my mind that whatever date her open heart surgery ends up being, it will be a date etched in my mind forever. read more

NICU Survival Checklist

Disclaimer: This post contains Amazon Affiliate links, but I would recommend them anyway even if it didn’t. It just means Amazon will kick a few pennies on the dollar my way if you end up buying anything through the links. I would use all proceeds for Reggie’s medical expenses, Scout’s honor. 

Now, I realize that this is a very niche post, as very few parents have the advantage as we did of being reasonably certain ahead of time that our baby would end up in the NICU. But I was frantically scouring the Internet for NICU advice posts, and let me tell you, I found precious few. So, if I can help just one person out a little bit with this post, I’ll be happy. read more

Feeding Regina

To give you a bit of a brief history, when Regina was born, they immediately shoved an NG tube down her throat because her blood sugars were dangerously low and they claimed she wouldn’t take a bottle (I was still unconscious and being sewed back up post C section). While she was in the NICU, she would take a soothie paci fine, and actually breastfed pretty well. She would refuse to nurse past 5 or 10 minutes, but she nursed. The NICU nurses would give her bottles, but she wouldn’t take more than 30 mLs. A full feed was 60. So, we came home with the NG tube and a feeding pump. read more

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.  read more

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.” read more

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. read more

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. read more

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. read more

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. read more