Tag Archives: down syndrome

Open Heart Surgery Telenovela, Part II

If you missed Part I, you may peruse it here

We arrived back in the CSU, empty handed and in a daze. We packed up our bags since Regina would go straight to the CICU after surgery and since we couldn’t stay with her we would have to check into our hotel. I went to the lactation room to pump while Scott went to the surgical waiting room with his laptop to attempt to get some work done. When I finished pumping, I headed to the surgical waiting room myself. Now, some of the best advice a fellow heart mama, Blair, gave me was to have a good support system of people we love and trust in the waiting room with us. The surgery was going to be 6-8 hours, and that is an agonizing length of time to wait. Reggie’s godmother, Sarawas there with my sweet goddaughter baby Scottie. My parents managed to sneak away from work and from the girls and stay with us for a while. My sister, Rachel, and my brother-in-law, Thomas, also managed to make it. One of my best friends, Christy, stopped by with her mom, who is also good friends with my mom. As is their wont, they came toting lots of goodies for me and Reggie. They also came toting Christy’s adorable baby, Mary. My friend, Leslie, called me the day before and told me she felt called to come all the way from Texas, but wanted to make sure that was alright with me. I told her to come on. read more

Open Heart Surgery Telenovela, Part I

I was hoping to write this while it was more crisp in my mind, but after six weeks of ER visits, hospitalizations, and having to be constantly on the ready to catch vomit and stop her from choking on it, here we are. Six weeks post op and I finally have a chance to sit down and catch my breath. And I thought heart failure was brutal! It was nothing compared to post open heart surgery, my friends. But I seem to be starting this post in medias res. Let us rewind a bit, shall we?

As you might have seen in my previous post, Regina was scheduled to have her open heart surgery on May 26th. As I predicted, we didn’t make it until that date. The week of May 8th, she started deteriorating rapidly. She was constantly throwing up, she had a distinct pallor, she was struggling to breathe, and when we went to her cardiologist appointment on Friday, her oxygen saturations were low and she had gained a pound. My mom and I sat in the exam room waiting for the cardiologist to come talk to us, looking at my pitiful child. I knew that the news was not going to be good. Dr. McKane, our cardiologist, came in shaking her head and sighing. “Oh, Regina, Regina,” she said. “Her oxygen saturations are very low. She gained a pound, but judging from her breathing, I’m guessing that extra pound is all fluid in her lungs. I have maxed her out on diuretics that you can safely give her at home. I’m really sorry, but I’m recommending that we admit her to the hospital this weekend so that they can try and dry out her lungs with IV diuretics while monitoring her electrolytes and go ahead and schedule her surgery for first thing Monday morning. I know that is not what you were picturing for your Mother’s Day weekend. I’m so sorry!” read more

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

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

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?!! read more

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. read more