Summer Break 2023 Weeks 1 & 2

Back in 2020 I captured our summer break week by week... I enjoy looking back on it.  So, why not start again.

Summer break week 1 was pretty uneventful.  This week consisted of much-needed rain.  I remember the boys getting called off every shift they were set to work that week. The calendar was relatively open aside from a nail appointment, dog training session, horseback riding, and my next growth scan.  The slow pace of the week was a good thing because Emily wasn't feeling well off and on this entire week.  She has stomach aches and headaches that were coming and going. This week concluded with Friday's ultrasound.  Baby boy had been growing beautifully to this point.  In his early ultrasounds, he would measure 3-5 days ahead, literally from 5 weeks onward.  As we got further into his pregnancy he was even an etire week ahead in many of his measurements.  At 27 weeks he was in the 74th percentile.  I remember the doctor coming in and saying "He's a little big, not too big!"  All I could think was "GOOD" because so often there is some growth restriction with babies with Down syndrome.  This growth scan was met with different results.  The doctor entered the room and said "He's doing good! 23rd percentile!" Ummmmm hold up.  He was 74th percentile 4 weeks prior AND measured "big" at every (all 9!) ultrasound.  23rd percentile is not a red flag, but it felt like an orange one.  I set another growth scan for 3 weeks from that date and scheduled my twice-weekly NSTs (non stress tests) and once-weekly fluid check ultrasounds.  I was already uneasy about Emily not feeling great and now began to worry about baby boy and his growth too.  There is an increased risk of stillbirth with these babies and my heart just does not like that.

Week 2:

Coming off Friday's unease of the ultrasound report was quickly met with Emily coming in my room overnight with "the worst headache ever" and feeling very warm to the touch.  She had felt like herself Wednesday and Thursday which made me feel like it had been a virus that passed.  As morning dawned, Emily's abdominal pain increased ten fold.  This didn't feel like run of the mill virus anymore, and I needed to take her in to see if it was anything bigger.  I wondered about appendicitis, a weird presentation of Step, or something else that riding out a virus wouldn't correct.  We trucked off to urgent care where they did a strep culture and examined her.  She had a fever of 100.8.  Strep was negative.  The NP suspected that it wasn't a virus but possibly kidney stones, appendicitis, or a UTI (though she said that would be rare since Emily is under 12).  As she said "UTI" my mind flashed back about a week and a half when Emily had some complaints in that compartment.  She recomended heading to the ER because they would have all the necessary tests and imaging Emily might need.  

Off we went, walking into an empty ER (!).  Within 2 hours it was confirmed that Emily did have a UTI, was given Tylenol and Motrin for her now 102.5 fever, Zofran for her nausea, and her first course of antibiotics.  2 ice pops later we were sent home.  For the remainder of the weekend we administered her antibiotics 4 times a day and kept her on a rotation of Tylenol and Motrin to keep her headache and abdominal pain at bay.

Sunday was Father's Day, which was spent doing church & visiting my family for a picnic.

Weekly cliff notes after and eventful weekend:

Monday: Chiropractor visit for me and Emily & off-ice training with my student, Shannon.

Tuesday: Therapy (Best thing I have done during pregnancy.... pregnancy after loss bites and pregnancy with a baby with a disability is heavy too.  It creates a mental cluster.) and Emily's dance rehearsal.  Thankfully by Sunday afternoon Emily was feeling like herself again and was in top condition to head into her recital week.

Wednesday: OB appointment and dog training.  OB appointment was good.  I absolutely love the OB practice that I am with.  And as far as dog training, with therapists coming in and out of the home once this baby arrives, Charlotte's manners were in need of an upgrade.  I'm doing a 5 week course with her to work on proper behavior around new people.

Thursday: The boys left for their beach trip with friends! I had my first NST and fluid check.  Fluid looked great and the NST was passed easily and with flying colors! 

Friday: I worked a postpartum shift from 9am to noon and the evening was Emily's recital.  She did a wonderful job! 

All in all, this week was a breath of fresh air.  All reports on the baby were good and he's been moving around well this week.  Emily is feeling better and no medical mysteries are looming.  It was a little bit nice to have the boys away: I know they LOVE the beach trip and whenever some of the kids are gone, a new dynamic descends.  This time, the girls (who are all typically pretty oil and water) began playing with each other all on their own. 

This week was win after win after win.  I will take it! 

Double Life

Since my last post, I sunk pretty low, but have begun to rebound!  Without going into all details, the takeaway is that Down syndrome pregnancy is hard, mentally hard. There are so many unknowns, possibilities, and maybes mixed in with the very real facts that Down syndrome is a disability and my child will have special needs.  Some needs are known (i.e. most babies with DS are low tone) and some are unknown (like which medical conditions he may or may not have). All these "what if" type scenarios swirl while simultaneously your normal life keeps ticking on as if nothing has changed, still expecting just as much out of you. 

I began feeling like I was living a double life... almost to the point where I felt like a fraud walking around, living life, working and just operating as if all were peachy keen.  But it wasn't peachy keen.

I was still expected to live my daily everyday life full of work, 6 kids, their schedules, activities, housework, obligations, bills, so much laundry, and constant bustle thanks to an unnamed 2 year old. 

And yet, 89% of my mental capacity was looped in my own reality of this pregnancy with its list of appointments, ultrasounds, and unknowns varying from light to morbid (increased risk of stillbirth, for the win, waaaaaah). The remaining 11% of me was feeling depleted due to the physical demands of pregnancy.

Combine all of those ingredients, mix well, and.... well, let's just say that it felt like I wasn't mixing them, at all.  My life sat there as the dry ingredients and my pregnancy sat there as the wet.  I kept them apart and expected a cake to appear.  Instead, I have been standing there, staring at both and wondering why nothing is happening! 

My husband summed it up best when he said that I thrive on honesty and transparency, and while for a long while it was appropriate to keep the Down syndrome diagnosis to ourselves, it started to feel like more of a hindrance.  I needed to fuse my life back into one.

So, I posted our announcement on Facebook for the world to learn about our special boy:

https://www.facebook.com/photo?fbid=10167531104350587&set=a.10151213714660587

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Susie Conrad

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Shared with Public

This isn’t something that needs to be announced, but it’s now solidly part of our reality that I want to share it.

The short of it is that we found out in March that this baby boy of ours has Down syndrome. Of course the diagnosis came with processing, learning, reading, reaching out, turning inward, and a whole bunch of extra appointments. (He looks super healthy thus far!!!)

The take-away, though, is that this diagnosis is not a negative… we cannot wait to meet this baby boy and let him lead our whole family down a path that we have yet to walk. Our greatest venture yet. I know there will be challenges: a full schedule of appointments and therapies, medical pieces that will be uncovered, and milestones met differently than his big siblings, but from I hear from other families with Down syndrome, there is so much joy ahead too.

Speaking frankly, a Down syndrome pregnancy has been hard because there are so many unknowns and potential concerns that weigh down my brain (I just need him here safely!) and my schedule is about to be packed with OB appointments as well as NST’s and frequent ultrasounds at MFM - as if my schedule is not full enough haha.

However, the diagnosis itself and this extra chromosome makes this kiddo so special. We plan love and nurture him as any other Conrad baby, and expect just as much out of his little life as all his big siblings, but I suspect he will teach me just as much as I teach him.

Now he just needs a name because that piece of the puzzle is completely unclear

2 things then happened... I was blown away by the responses. 101 people wrote a comment under that post and 294 reacted. I didn't have a single negative, iffy, rude, or uneducated response.  My thread was flooded with love and acceptance.  It's all I could have hoped for.  In the days that followed that post I felt more and more whole.  This baby and pregnancy now morphed and joined my everyday life and not only that, but my baby preceded his diagnosis.  People were so kind in their responses about this boy.  

Operating my life again in a single capacity, owning his diagnosis and differences as part of our journey now and not something that is separate or being uncovered was so good for my heart.  Having a baby with Down syndrome is now just a part of who we are... and that is a comfortable feeling.

Then to now... learning our baby has Down syndrome

Then to now... total acceptance.

Once my mind simmered I was able to pace myself again and step back into current reality instead of needing to race ahead.  My biggest job right now is to enjoy his pregnancy and I can do exactly that. :) 

I'm now 20 weeks, likely over half way since these babies tend to come a bit earlier.  In the last 5 weeks of finding out his diagnosis, the thing that sits with me the most is that he's a baby boy.  A baby boy with Down syndrome.  He's healthy.  He's mine.  His little life will have different challenges than my other kids, but I'm here for it.  I feel ready to learn and grow right along with this sweet boy.  

Now when I mention to someone that he has Down syndrome, it's as if I'm mentioning that we know he has blue eyes (which he probably won't, haha).  It's a part of him, simple as that.  

There are some realities that are different, however.  He's watched a bit more closely by Maternal Fetal Medicine in addition to my OB appointments.  Up head his schedule doesn't look too daunting.  

- 23 weeks: fetal echocardiogram with the pediatric cardiologist

- 24 weeks: OB appt

-26 weeks: MFM ultrasound

-28 weeks: OB appt

I think after that point it will get busy.  At my 20 week appointment, he got a clean bill of health.  This baby is growing great.  There are no major abnormalities.  The doctor seemed very impressed with little man.  I got the rundown of what is ahead, however.  Starting at 32 weeks I will be in the MFM office for a twice-weekly NST (Non Stress Test) and an ultrasound once a week.  The placenta has an extra copy of the 21st chromosome as well, so the placenta doesn't typically stay as hearty for as long.  Therefore there is a higher risk of stillbirth, so we watch carefully making sure that baby boy is still good in there. :) And if at any point he's not, we head for induction.  I'm guessing, knowing my body and babies that he will come closer to the 38/39 week mark, but we shall see.  

Meanwhile, I finally feel at peace with both his diagnosis and what is ahead in his pregnancy.  I love this little boy so much already and while I plan to enjoy his pregnancy, I also cannot wait to meet him face-to-face. 

3 weeks ago, 2 weeks ago... learning our baby has Down syndrome

Three weeks ago, we got confirmation. 

As life resumed post-amnio, a test result was plunked into my patient portal.  As I opened it and scanned the notes it read:

"RESULT: MALE WITH THREE CHROMOSOME 21 SIGNALS"

"INTERPRETATION: TRISOMY 21"

Down syndrome.

We expected the result to be exactly this.  It wasn't a shock.  My NIPT had a very high value for Trisomy 21.  The NIPT is rarely wrong as it looks at actual placenta DNA.  But... but but but.... reading the result, with my eyes, in writing, worded clinically, was a whole different entity. It was jarring.  Factful. Real.

My baby has Down syndrome.  

I am expecting a baby boy with Down syndrome.

However, I felt a pause and a peace settle.  I didn't grieve or mourn as I had read so much about.  Speaking frankly, after walking through as many miscarriages as I have... I know loss, brokenness, and mourning.  This is not that.  This is not the death of anything.  The news of these test results was simply verification and a glimpse into my baby's world ahead of time.  I felt an overwhelming competency and calm with this little life entering mine.  I guess the mourning could come from welcoming a child who is different than you pictured, but I've had 6 children and if there is one thing that having a plethora of children shows you, it's that each child is unique and different from the get-go.  I've seen their temperaments and personalities from birth.  They are all vastly different and seem to come already programmed with their personalities, temperaments, and natural abilities. Same story with this little guy.  He is who he is.  This diagnosis didn't change anything about him. I felt ready to dig deeper into the world of Down syndrome and what I needed to learn, and know, and do. Game on.

While I was feeling all this peace, Jim wasn't sure what to think.  I think his processing looked a lot more human and real than mine did.  It involved more grappling and uncertainty, I think. The day we got the amnio results back, he stayed quiet.  Later that day he asked me if I could find a book about Down syndrome.  I hopped on my Down syndrome pregnancy board and scouted out a book for him.  It arrived 2 days later. The book sat for a few days and I wondered where he was at in his processing or if he would pick it up.  On a Saturday afternoon, he read it in one swoop.  The book seemed to hold the answers Jim sought.  

Two weeks ago roles reversed.

While Jim read the book about Down syndrome and digested its contents, I began the deep dive into Down syndrome.  My dive was, well, not the most graceful.  I read too much and began preparing for things that I had no place preparing for yet.  

My mind WHIRLED.

I felt I had to capitalize on that blessing that I was given by these test restults: time.  I had a Down syndrome diagnosis during pregnancy.  Early in pregnancy.  I needed to learn everything.  I needed things in place.  I began jotting notes as I read: 

Get a new pediatrician who specializes in Down syndrome

Set up a consultation with said pediatrician (or maybe interview more than one?)

Find a lactation consultant who is familiar with Down syndrome

Set up a prenatal meeting with her to make an action plan for breastfeeding

Get "in" with the local Down syndrome center and figure out what their "New Parent Program" does and offers.

In first six months of life, see an ophthalmologist

Secondary insurance? How and when?  What does it cover?

When to set up services like speech, PT, or OT?

Let me tell you, my brain can be a beautiful tool when making big life decisions.  It leaves no rock unturned and it steadily thinks through all possibilities, finding the best choices, actions, and decisions.  

However.

It also can be a complete fault when it hyper-fixates on things that it shouldn't. I suddenly found myself in a dark and consuming place.  This diagnosis felt like too much.  Too much to do.  Too much unknown.  To much TO know.  

I may have spiraled a bit.

Or a lot. 

I also felt alone because Jim, while he had read the book, was still quiet.  You know, because life was still trucking along and we have a busy one.  Work, kids, commitments... all of that was still happening amid these weeks of my mental pause. He was smart though: he wasn't halting life to stare at this diagnosis. 

Finally (after pretty much completely unraveling), I opened up to him and my brain spilled out its contents.  It was too much.  My brain had consumed so much information that I thought it might pop.  It felt entirely overwhelming and I felt completely alone (not because I was alone, but because that's what my brain was telling me. Nobody else was deep diving with me. I must be alone. False.)  Thankfully, Jim felt assured and calm regarding what was ahead. His book gave him just enough information.  As I shared my concerns, Jim talked me off my ledge.  I put my to-do list away and my mind was able to recenter again.  This is just a baby... a regular baby with some unique challenges.  And more than that, he's my baby. Woo, thank you Jim.

We reached a beautiful place of acceptance for both our baby boy and his diagnosis.  My brain stopped spiraling, Jim's mind understood and we turned to walk through his pregnancy just like each of our other babies.  It was a pretty beautiful thing after the mess that I made in my mind earlier that week.

4 weeks ago... learning our baby has Down syndrome

Four weeks ago I underwent my scariest pregnancy test to date.

Four weeks ago I was 16 weeks exactly... on March 2nd.  In months past, March 2nd was anticipated because it is the day that June would turn 16. A huge day of celebration. However, with our new reality being what it was, March 2nd was also the day that my husband and I walked into Maternal Fetal Medicine to get an early anatomy scan and amniocentesis done on our boy.  

I felt a variety of things.  I was nervous about choosing the amnio, even though I knew it was right for us. I had talked to friends who had gotten the procedure, weighed my "why," and researched the procedure itself. There still left room for doubt.  My thoughts were all so new, almost foreign.  My mind felt mixed as the whirlwind continued from the initial phone call the week before. I was nervous to get an iron-clad answer the amnio would provide. I was also looking forward to an iron-clad answer so I could do the deep dive into learning the world of Down syndrome and how to best support this baby and be the best mom to him once he's here. The anmio would give me that but it was still scary! 

On the lighter end of things, I was excited to see him on ultrasound again and know that he was thriving in there.

We got to the MFM office and were taken back for the anatomy scan first.  Immediately I could see his heart beating away and saw his typical MO of wiggling the entire time. This baby is a mover and a shaker.  He does not stay still for a moment when on ultrasound.  After 45 minutes of a scan, and probably a pretty frustrated sonographer (though she didn't let on), he got a clean bill of health.  All organs accounted for, all pieces intact, everything where it should be... and no markers for Down syndrome.  That piece helped solidify the need for the amnio.  This baby looks like any other on ultrasound.  Does he truly have Down syndrome? Is the screening test correct? Ultrasound is likely not the piece that would be able to verify the diagnosis.

After the scan, I was prepped for the amnio: verified I was who I was, signed consent, and the room was readied.  The doctor, nurse, and sonographer were in place. My belly was sanitized. Tools were assembled. The procedure began.  An amniocentesis is a procedure that collects amniotic fluid so that the baby's DNA can be seen and verified.  Needle. Belly. Collection. Ouch. For two minutes I stayed still as amniotic fluid was collected. Baby boy stayed active, but away from the needle.  There was a pocket of fluid in a perfect spot and 26 ml was collected. As the procedure ended, I got a tiny bandaid as my badge of honor.  

Then the hard part came.  For the next 3 days, I was to lay low, take it easy, and let my body heal from the procedure, watching for signs of miscarriage.  The first-day post-procedure my mom came to help with Andrew.  The second and third days were a weekend, which was handy.  Laying low wasn't too hard.  Not worrying, however, was impossible.  Those were some very hard days for me mentally.   However, all was well and no signs of miscarriage were seen.  Soon, I felt like I was back to myself. 

In the week ahead we would get the initial test result, and the more detailed one in about two weeks.   I began to join support groups, read articles, listen to podcasts, and begin my descent into learning ALL the things. The biggest takeaway from this week, however, was that this baby was so fiercely loved and regardless of amnio results, I couldn't wait for him to join us and see what he would bring to our family.