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.”

To satisfy your burning curiosity, dear readers, I will fill you in on what my and Regina’s weeks are looking like nowadays. I know you didn’t ask! That hasn’t stopped me before!

NST Routine:

After they do the usual blood pressure and weigh-in (“I’m wearing very heavy boots!”), I try to make myself as comfortable as possible laying down on a rock hard examination table with a paper covered pillow that keeps falling down to below my waist, thus making it impossible to retrieve and move back up to behind my head in my current delicate (read: overturned turtle-like) condition. I immediately regret the aforementioned heavy boots. They strap two monitors around my belly: one to monitor Regina’s heart rate, and one to monitor contractions and uterine activity. Then, I twiddle my thumbs for 20 minutes, listening to the beating of Regina’s heart and watching the wavering lines print out on the machine. Sometimes, I get to hold the monitors in place with one hand while clutching a button I’m supposed to push every time she moves with the other if I’m really lucky. I always forget to bring my phone or any sort of reading material. Then, I try to do a rosary in my head and start arguing with myself whether I’m doing the Apostle’s Creed right or I’m inadvertently slipping into the Nicene Creed. And then I remember that I can’t even do the Nicene Creed right any more because they just changed it on me! But I digress.

Anyway, what they are looking for with an NST is for Regina’s heart rate to respond to her movements, my contractions, or anything else by going up and down. If the heart rate stays the same, they become concerned and make me drink a juice box. If that doesn’t work, they take this alarm buzzer thing and buzz my belly, causing poor Regina to jump and move around in protest. I don’t blame her. My high risk OB figures that it is the fetal equivalent of buzzing the tower. (Only my husband will appreciate that Top Gun reference.) So the past few times, we have only passed our NSTs by virtue of the buzzer. I’ll take it.

BPP Routine:

The biophysical profile is pretty much just a high resolution ultrasound where they make sure she is still growing and thriving in the womb. Due to her heart condition and her Down syndrome, there might come a time when it is safer for her to be outside the womb rather than in, even if she isn’t full term yet. They check her growth, her vital organs, the amount of amniotic fluid, whether her digestive system is working, whether she is practicing breathing, and her heart, of course, to make sure it isn’t in heart failure yet. She has always done me proud at her BPPs. No fluid where it isn’t supposed to be, growth right on track, digestive system is fine, practicing her breathing, and her amniotic fluid is the perfect amount. Her heart defect is painfully obvious (you can only see three chambers), but she doesn’t appear to be in heart failure yet. It looks like she has her daddy’s long eyelashes, plump cheeks (solely attributable to her), and a head full of hair. I also thought I spied a sandal gap between her big toe and second toe, which is a cute quirk that people with Down syndrome tend to have. We shall see!

Regina’s NSTs have been suspenseful, to say the least. At her NST this week, my OB didn’t like how her heart rate was responding (or, more specifically, wasn’t responding) and called my high risk OB. They rushed me over to the high risk OB’s office (which thankfully is in the building next door and is connected to my hospital) to have another NST done. Let me tell you, they have a fancy NST setup over there. You get to relax in a cushy reclining armchair with home decor magazines within reach and no need to hold any monitors in place or click buttons. If only I hadn’t been reclining in there terrified for my baby. I probably would have enjoyed it more.

Anyway, her heart rate didn’t respond for that NST either, so my high risk OB told me to go eat lunch, go home and pack my bags, and come back for a third NST. If Regina failed that one too, he was admitting me to the hospital for 24 hour observation and possible delivery. No big.

When I got home, Mom and I panicked and ran around my house like chickens with their heads cut off until Scott arrived and calmly packed the girls up and buckled them into their car seats. Then, he sent Mom off to take the girls to her house, very kindly and patiently got some pliers to attach my St. Teresa of Calcutta medal to my Miraculous Medal chain, and sent me off back to the high risk OB to have the potentially fateful NST.

Yet again, Regina only responded when the high risk OB used that buzzer. He said he was on the fence about admitting me to the hospital and had to confer with his partner in the practice about it. I waited with bated breath until he returned. He came in and said that he wasn’t admitting me, but he wanted me to do an intense kick count 20 minutes after I eat dinner and if I can’t get 10 kicks in 1 hour to head to the hospital immediately. Also, I was to come right back for a follow up NST and BPP the next morning.

Scott took me this morning to those appointments and praise the Lord, she passed both. She just needed some moral support from Daddy, apparently. So, no baby born at 35 weeks for me. Can’t wait until next week when we get to do this dance all over again. In the meantime, I have been sternly instructed by the high risk OB to be religious about my daily kick counts. I will be very surprised if we make it to our scheduled C section date. And NICU time seems extremely likely.

In light of all this, I have been like a cat on a hot tin roof (hello, Tennessee Williams). Scott says that if I keep this up, I’m going to go into heart failure before the baby does. I hate it when he’s right. So, I’m trying to maintain my peace during this time of Advent while we await in joyful anticipation the coming of the Prince of Peace.

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23 thoughts on “The Thrill Ride that is the last few weeks of a Down syndrome pregnancy

  1. janco4562Janice

    You’re such a strong, positive mom. All your girls and your husband are blessed to be cared for by you.
    The pastor and his wife at the church where my husband and I were saved had a DS baby and were the best example for all of us at that church. The wife was the Sunday School teacher of all the young married women. She shared with us that after her baby boy was born with DS, she was concerned about how her family would be affected. She asked an old preacher if he thought she could ask God when she got to heaven why He gave her a special needs child. In his wisdom, the old preacher replied, “If you still want to know.” She told us that that son of theirs allowed them to minister to many people and in many situations that they never would have been allowed to had he not been born into their family. God has entrusted this sweet baby girl to you because He trusts you. I will pray for you, your sweet babe and your family. Blessings.

  2. Ashley P

    It’s so funny that I have been following you on here for three years and now you have your fifth child (me pregnant with my fourth). And you have her on my birthday!! When you said the date that you would have the section on your post my heart filled with joy. Happy Birthday Regina. I am so excited to share it with someone so special. Today is the feast of the Holy Innocents and while reading a reflection about it… this caught my eye. “The feast of the Holy Innocents reminds us that in God’s eyes (that is, according to the true value of things), no-one is unimportant, no-one is unnecessary, no-one “doesn’t really matter.” I smiled thinking of Regina and the beauty she will bring to your family’s life. Please continue to update. I do not have any form of social media but thankfully you do not have your Instagram blocked so I can actually get on by clicking the pictures below to see your updates and I also check here. I will continue to pray for both of you!

    1. Post author

      Happy birthday, Ashley!!!!! Thank you, what a beautiful reflection. It is so true.

  3. Meredith

    Dear Sylvia- I just happened upon your blog when looking for ways to feed my 13w little girl that refuses the bottle and needs fortified BM for weight gain. She is also a ❤baby (7mm VSD) and we’re waiting to find out about surgery next month.

    Hugs and prayers for you and your family and for only the best news going forward.

    1. Post author

      Congratulations on your little girl! I’ll be praying for her and her heart surgery. Regina will probably have her OHS when she is 3 months old, but we’ll see how her heart does as to when it happens. I’m thinking we’ll be needing fortified BM for her too once she starts working too hard to feed. Keep me posted if you can on your little one! I love finding fellow heart mamas.

  4. Alicia S

    Having gone through a couple NSTs as well, you’re right how hard it is not to fall asleep. Glad that Regina continues to do well. Prayers for continued baby growing!

  5. storiesofourboys

    I realized she had a heart problem, I didn’t realize she has down syndrome. Do they know this for sure? What a week, well I mean really a year for you! You are amazing, and the sleeping thing is so funny. I am nervous FOR you. I have a sister with severe special needs. She actually lives in a group home now, has since she was 28, but my mom always did everything for her before that point, and we helped when we were kids. You will have incredibly sympathetic and compassionate children because growing up with one of the least of these grows something in you that many people miss out on. And I do hope you get a chance to sleep!!!

    1. Post author

      Yes, her heart defect is commonly associated with DS, and a blood test came back with a high likelihood of DS. So, we don’t know for certain, but it is extremely likely. I didn’t know that about your sister! God bless your family!

  6. Rosie

    Ugh I can’t believe they have such an uncomfortable setup for NSTs!! Is there any way you can just do those at the high risk OB instead? I had to do those & BPPs weekly for the twins but there was at least a nice cushy chair for me to use (although with 3 monitors I couldn’t get comfortable because whenever they finally got a read on both twins I couldn’t move!! Still praying praying praying for all of you!

    1. Post author

      I know, Scott asked the same thing. I only have a few of them left, but it might be worth looking into. And I didn’t even think about doing it with twins! So uncomfortable.

  7. Ellen Johnson

    Oh man! You’re really going through it. Still praying for you and Regina especially for a Christmas miracle and peace. PS, I use my boots as an excuse at weigh ins too! It’s legit!

  8. Ashley P

    Good luck and please update everyone as soon as you are feeling ok. I have been checking here everyday awaiting her arrival.

    Ashley from Louisiana.

  9. Nell

    So much going on for you and her. You’re a great mom and your family is at the top of our prayer intentions!!

    1. Post author

      Thank you! I’ve been praying for a smooth and easy delivery for you as well, mama!

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