Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Wednesday, October 31, 2012


So where are we...

I am reminding myself to be calm this morning although I am frustrated.  

After meeting with the OB yesterday, she did some digging into the previous level 2 scans at the peri's office.  It was determined that a fetal echocardiogram was not done at either appointment. This was such a disappointment to hear for a few reasons...
  1. I trusted the doctors to do the testing that needed to be done and the heart and GI problems were my greatest concerns.  Also, in our research, it seems fairly standard for babies with DS.
  2. We had already had a bit of questioning about baby's heart (fluid, presence of tissue or not and now the thickened heart wall).
  3. Babies born with DS have a 50% risk of heart related complications. 
I know that although these tests won't be able to fix anything; I do believe that they will allow for us to best prepare for baby's birthday.

So I am appreciative that our new OB believes that we should follow-up with this.  Next week I will visit the peri in their health system and she will do an echo to check things over well. 

I am more frustrated because they said it is a bit late to be getting an echo done, so that makes me a little anxious.  I am assuming, though, that because there were no MAJOR issues seen so far, that is why the other docs did not do the further testing.  Hoping that the little bug's heart is a-ok and we get a positive report on Tuesday.

Monday, October 29, 2012

The calm...

So I had a few people ask what is up lately and why the no blogging for a bit.  The answer is simple:


I am really feeling a sense of calm about things.  Life is going along and we will rise up to meet anything that joins us.  I have been crocheting baby hats and still pondering over names (that is our/my biggest issue currently) and not really reading up on anything.

I have been in contact with a few moms in the area who also have been through all this and they remind me to just "be."

I am so grateful that we found out about all of this so that I could work through emotions and be truly at this point to just meet that little one and LOVE.  I am as informed as I can be at this point and feel like I have an arsenal of resources ready for when they are needed.

For now I can just BE.

I can be at peace and really enjoy the remainder of this pregnancy.

I can be more present with my kids and enjoy them!

I can be confident in what I know (and what I don't know) in life.

I can be not worried about everything that may - or may not- come our way.

It has been such a nice next step in this journey.  I am sleeping better (thank you to my hubby for a new bed--that has helped a ton!). I am not reading about all the doom and gloom pieces of this diagnosis.

Now, not to say that we are all rainbows and ponies all the time, but a current life stress we have also been dealing with for many months is also coming to an end.  We are also ready for that chapter to be completed so that peace can return to our home for us all.  It has been a year of ups and downs within my extended family and I just continue to have hope that my family can find happiness and contentment in their own lives as well.

30 weeks... Less than 10 weeks for sure. My guess is that this little one will join us sometime late in December, rather than my due date.  My initial feeling was December 28th, so we will see...

Hope you are enjoying this Halloween time of year--can't wait to see my little Superheroes all ready to trick or treat tomorrow night :)

Tuesday, October 23, 2012

Anti-climatic appointment

So.... I was really hoping for more out of our appointment yesterday with the perinatalogist. I am 29 weeks--woo-hoo-- and we were thinking we would get some good info.

The tech did her thing and then she went to get the doc. She measured several things and looked at the heart a bit. Before she got the doc, I mentioned the "goals" of the appt were to check out the bowel for blockages and recheck the heart. She nodded and went to get the doc.

He came in and took a look at the heart again and mentioned that the right side was a but thicker, but everything was functioning properly. I asked about next steps and he said that we didn't need to do anything about it and they would do an echo on the baby after it is born. Then he mentioned about switching providers and asked where we would be delivering.  After that, I got the feeling that they were kind of just brushing us off because of the health system provider switch. 


Not really what I envisioned from the appt today. They didn't even mention anything about the other markers from before. Here is sweet baby's face :)

I should be grateful that there were no "real" issues that came up, but I am frustrated.  I have my appointment with the OB next week, so I plan to ask about all this then and see if they feel I should see the Iowa Health peri instead.  I also have Colton's 15 month check up with the ped next week, so I will ask her opinion too.

I really despise the medical part of life sometimes.  You really must be your own advocate and be on top of everything.  This makes me a bit nervous for what may come ahead.  But until we know more, we will continue on!

Wednesday, October 17, 2012

Serving joyously

Serving joyously

My favorite line from "a good and perfect gift" so far.

One of the most interesting parts of this journey so far for me is re-evaluating my life's goals and my goals for our family and children.

Before this, I would have said my goal for my kids was like that of my goal for my students all those years that I taught - to create happy, well-adjusted goal-mnded independent citizens who contribute to society in a worthwhile way.

I wanted to create little people who would be independent thinkers that went out to do good.  
They would not become a drain on society.
They would not conform to others' thinking.
They would be individuals.
They would have a sense of focus and goals.

I think my time at home and "out of the work-force" has caused my thinking to change a bit.  I really want for them to have the life that makes them happy.  I hope that all we instill in them will encompass the other list, but truly without happiness, it will all be lost.

I LOVED my job. It was my calling.  To teach and guide and watch learning happen.  I thrived on it. Especially in my last position where I worked with adults working with kids.  Having conversations that mattered about the teaching and learning process with students and teachers was AMAZING.  Then fold in the professional development and data - well, I am just too big of geek to go into that here, but I felt it was my calling and the way for me to be a servant leader.

Then we found out Colton was on the way.  I must say, that this was the God wink that I had needed.  I loved my job, but I LOVED my family.  I was getting caught up in the craziness of working mom life and I needed peace in my heart and soul and mind.  I really believe that Colton was God's way of saying "It's ok to walk away from this role.  I have a more important calling in mind for you right now."  And boy did He.

I have found other ways to keep my toes in the waters of education.  Helping with curriculum at church (I am such a geek, but I love it!), teaching small groups at church, teaching online courses. I can remain as involved as I would like and this has been a nice balance for my teaching/learning soul.  I am able to do these things and with joy.

Does this mean I am still working towards my goals?  Yes and no.  My own personal goals have shifted.  I completed my second masters in Administration 4 months after Colton was born.  I had planned a career in working with curriculum and development.  Plans change.

My new goal is perfectly summarized in those words "Serve joyously."

I want that for my kids.  I want them to choose a life path where they can use their gifts and talents to impact society in a positive way.   I want them to find ways to serve joyously.

That allows me to accept part of this diagnosis that bothered me.  "What will my child's future look like with a the road blocks that Down syndrome might cause?"  My new outlook:  As long as he/she is serving joyously, does it matter whether or not he/she completes schooling after high school?  Does it matter if she/he lives at home much longer that expected?

My answers are no. If this kiddo (or any of them, for that matter) find a way to contribute to society in a productive way that allows them to use their gifts/talents and serve joyously that will mean a lot.

I feel this might become my mantra for a while.  Who knows, maybe it will help while cleaning bathrooms (which I despise), or cooking on a night when I am worn out, or taking the time to snuggle when I am DONE for the day.  I will serve my family joyously.  They deserve it.  I deserve it.  He deserves it.

Life could be infinitely worse than I could ever paint it to be.  It is too short to not live with JOY.

Tuesday, October 16, 2012


So, for anyone who knows me, this will not come as much of a surprise.  But I have been reading lots lately.  I started with blogs and such and know I have read several memoirs of families of children with DS.  The first read was Bloom by Kelle Hampton.  I really liked her blog and it was interesting to hear her story more fully.  I have read parts of  Gifts and Gifts 2 and those vignettes were heartwarming as well.  Now I am reading A Good and Perfect Gift by Amy Julia Becker.  Wow.

These women have such courage to share their most intimate feelings.  I hope that I can come close in my own writings so that others may have a deeper sense of our journey.  But reading this morning during Colton's nap caused me to stop and pause and reflect and journal right away.

In the story so far, the baby has just come into their lives with a birth DS diagnosis.  Someone commented that it was good that they didn't know beforehand because then they would be preparing for DS and not for the baby.  "I prepared for a child, a family, a gift--not a condition, a syndrome, a problem."

This really struck me this morning.  I really had to reflect and think about how I was preparing.  I think I have actually struck a nice balance. I have ordered a ton of books (thank you Amazon.com) and I read online a lot at first, but now I am chilling much more.  Most of the books and pamphlets are set for reference once we need them and that is comforting to me.  And, honestly, I started looking at them and was a little freaked out.  I will take it as it comes and the books will be there as needed. 

I am really looking for information from parents who did have a prenatal diagnosis and time to prepare.  I created a poll on the DS board that I have been frequenting as to when those parents found out about the diagnosis.  Shockingly, nearly 70% were a birth diagnosis.  (This is where the data geek in me comes out...) So out of 117 families, 82 found out at or after birth.  Only 35 were prenatal.  Hmmm...just some further food for thought. This is such an interesting adventure!

Monday, October 15, 2012

Next week :)

I got a call from the perinatalogist's office last week and they needed to reschedule my next ultrasound, so I get to see the little bug next Monday! This will be the follow-up level 2 scan to check baby over really well again.  The heart and bowels will be the focus areas, in my mind.

I am excited to get to see the little squirt, but I am also anxious to find out what might be going on.  Having faith that all will be fine and that the fluid around the heart and in the kidneys have resolved, too.  More waiting :)

Other than that, I felt much better over the weekend.  In my medical opinion, I believe maybe the little one flipped into position the other day and is now head down.  I will be extra bummed if he/she is still breech next week.  The movements feel differently and I am having familiar pressure, so I really hope this is just what happens in the third trimester to most moms.

THIRD TRIMESTER!  I forgot to celebrate that accomplishment aloud!  I am 28 weeks and have made it to the final trimester still standing (literally!).  I am trying to use Colton's naptimes wisely.  And, as much as I feel like a lazy bum, I think it gives my body the resting it needs to keep going the rest of the day.  If only I could actually nap too!  The shots are still going well and B has been such a trooper. I know he likes giving the shots as much as I like having them, but I am blessed that he is so patient and kind and gentle--my behind has not been sore much at all!

Thoughts are generally much more positive these days.  I can hardly believe that it is the middle of October. I am generally a "Christmas tornado" and finished quite early with gifts and such.  I am feeling a bit more of a crunch this year based on the "what ifs" that could occur.  I am a good portion of the through our shopping and even wrapped some things this morning! 

We have several other things going right now and once that all calms down, I think my attitude and focus will be much better.  These extra stresses have really bogged down my attitude lately. Which I am not proud of as it is robbing the joy from each day.  One thing I have learned this year---goals and focus and control in one's life is so important.  I am about finished with those that lack those things and refuse to move forward and control their own destiny.  I do believe there is an ultimate plan for us by Him, but for the love of Pete, those who just sit back and complain about the life happening around them is such a joke.  Vent over:)

Friday, October 12, 2012

One of those days

So today it hit me.  Am I perfect storm for pregnancy?  I started having some aching and contractions this morning and started to worry immediately.  I had been very worried about this with the boys after our experiences with Kate, but things have been going so well that I haven't really worried about it much with this pregnancy.

Here's a quick background....During my pregnancy with Kate, I started into labor and didn't even know around week 27.  When I saw the doctor, he noticed the signs and put me on bedrest.  That lasted a weekend before I was back in the office as we thought my water broke.  I was in the hospital for a week at that point while they stopped labor and gave me steroid shots for her lungs. Anyone who has experienced Magnesium Sulfate will understand what a horrible week that was.  Many parts I don't even recall because I was so out of it.  At any rate, I was released to bedrest at home and lasted until 32 weeks when it all started again and she was delivered that night. 

She spent 30 days in the NICU coming home the day after Mother's Day.  It was a frustrating and worrisome time, but thankfully within the year, she was right on track and you would never know looking at her today that she was 8 weeks early.

With the boys, I knew much more what to expect.  I was monitored much more closely and was also given weekly progesterone shots (17P) in hopes of keeping labor at bay.  I was on partial bedrest with the boys starting about week 18, too.  This all worked as Andy was 37 weeks and Colton made it to 39. 

Fast forward to this little one.  I am no longer "working" (ha ha ha!) and have a 14 month old to chase around. I have been feeling pretty fantastic (despite the heartburn and back aches).  I have been able to keep up, for the most part, and still be a mom and wife (and housekeeper and cook and...). 

Today, though, I started to get lots of tightening.  I started to freak out a bit.  Holy cow, what if this little one comes early?!?!  How will the impending diagnosis impact any other "preemie" issues that could come into play?

I am going to lay low this weekend and hope that things chill out.  I am 28 weeks this weekend, so barring any DS related issues, baby would spend time in the NICU, but probably be just fine.  Tiny and need lots of support, but fine.  

Praying for the little one to stay put.  Praying for me to know when to say when.  Praying for my family's understanding.

Tuesday, October 9, 2012


On one of the baby boards I check out online, I noticed a signature a mom had.  (For those of you who are already lost: a board is like an online chat and a signature is included on some people's posts with identifying info for that member). 

This was on the Down syndrome board on BabyCenter.  Most of the mom's list when their little one with DS was born and/or medical complications that little one had.  This mom included that, but also included a detail about her other two children.  I cannot remember exactly what it said, but something about one having curly hair and the other having brown eyes:)  I LOVED it!

It made me think about how we all have SOMETHING that is different and unique about us.  It made me think that we all have things come up that are unexpected.  It made me think.

Here is what my current siggy (or signature) reads:

SAHM ~ most work I've ever done and loving it!
DD (2005) ~ DS (2006) ~ DS (2011) ~ (t21) EDD 01/06/13
Angel babies '03 and '05

But it could easily be changed to:

SAHM ~ most work I've ever done and loving it!  (although my house is never any cleaner, I am less "put together" and I am somehow more exhausted than when I was "working")

~  DD (2005)  born at 32 weeks, has red curly hair, freckles and is so kind-hearted
 ~ DS (2006)  born at 37 weeks, has (had?!) Eosinophilic esophagitis, a contagious smile and is seriously one of the funniest people I know
~  DS (2011) born at 39 weeks, also has very red hair, chubby cheeks and allergies to milk, eggs and peanuts; is becoming a daredevil (which frightens me just a bit!)
~  (t21) EDD 01/06/13 -- will probably arrive in late December and after that who knows?!!? We are just his/her parents along for the ride

Angel babies '03 and '05  (I miss this 2 little ones we never got to see.  It makes me wonder how they would have impacted our life.  It makes me wonder if it was God's plan for us to only have them for a short time.  These experiences help me to have a great respect for life and to remember to hug my kiddos often.)

There is so much in life we have no control over and I must always remember a phrase I heard back in grade school: let go and let God.  It is becoming easier and I feel much more peaceful because of it.

My priorities are set and my goals are in mind.  If I can stick to that, I know we will be ok.  

Sunday, October 7, 2012

Love this post!

As I continue to struggle with the perception and reality of the diagnosis in the world around us, I happened upon this article and loved it!


Saturday, October 6, 2012

Next appointments...

I can hardly believe that I do not have any pregnancy related appointments until the end of the month! Is this what a typical pregnancy is like?? Whoa!

I will be having another level 2 scan at the end of the month. They will be checking out baby again, especially focusing on potential bowel and heart related issues. It should be a good time to see everything and prepare for anything prior to birth. Not sure how many more ultrasounds we might have after that. What we seem to hear is that if there are heart issues, those will take some time to deal with. They like to wait until baby is nice and strong before surgeries with the heart. The bowel issue seems a bit different a that would be taken care of much sooner after birth. Hoping we don't have to deal with either of these issues, but only time will tell!

The other question I keep getting is how are we doing with all this. Honestly, I am at a point where I am a bit emotionally spent. I have read and researched and googled so much, that I feel a bit on overload. The one thing that I am sure of is how wide a spectrum this diagnosis can entail. That unknown is what is hardest right now because I cannot plan ahead for this and must trust and go with the flow.

There are several words that continue to plague me as my thoughts drift during the day and night: retardation and termination. There are so many things that I have been unaware of in life (truth be told, I was blissfully ignorant and wish I could be again). I have crafted several posts encompassing my thoughts around this, but am still struggling with it. All I keep coming back to is the apparent statistic that 90% of parents who receive this diagnosis prenatally decide to terminate the pregnancy. This is something that is truly eating at my core beliefs and I cannot believe it. I am so grateful that my husband and I both agree on this and we are carrying on together. I may post more later about this, if the words come.

How are we doing? Living life as best we know how and loving our kids. Now that I think about it, I can't imagine that will change with our new arrival!

Tuesday, October 2, 2012

Appointment updates and more signs from above

Well, I finally passed my glucose test yesterday--YAY!  SO once less thing to worry about there.

I also had my appointment with the new OB.  I liked him and we just talked about my history and current issues with this little one.  There are a few things that I need to think about and consider in switching.  It shouldn't surprise me, but it always does when I here conflicting ideas about care.  There are a few things that Brian and I need to talk about.  (Brian wasn't able to be with me yesterday because he had taken Andy to Ohio for hopefully his final scope for his allergies!  what a week!!)

The good thing is that my preterm labor issues are non-existent thus far, so really I am a "normal" pregnancy unless something changes.  It also sounds like the later that we do the next anatomy scan, the more that might be able to be seen.  As much as that is stressing me out, I would rather wait and know what we have going on, if anything.  So, we will see! (darn that patience again!)

Another amazing sign was given to me today.  I was up with Colton early this morning and a thought came to me to call a former co-worker who is involved in a MOPs group.  I has this sudden feeling that I should contact her because she would help me on my journey somehow. I got in touch with her today and just asked if anyone in her group had kiddos with special needs.  She mentioned a few things and about a woman who had an issue that was pregnant currently.  I asked if she could tell me more and got goosebumps reading her response as she mentioned chromosomal abnormalities and a missing nasal bridge.  Holy $hit!!!!!  is what I wanted to say, but I then my surprise went away.  This conversation was planted to be had by something much greater than me.   I am hoping I might be able to connect with this mama and see what role she has in my journey.

It is another gorgeous fall day here and although my heart and head have had much worry lately (I've been crafting a post that isn't on the happiest of related topics), it is moments like these that remind me to keep the faith.  Everything truly does happen for a reason!