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.

Tuesday, November 27, 2012

Another update

No news is good news :)  That is at least how I am operating these days, so please forgive lack of posts and assume we are all good, which we are!

Things are going great here. I am getting larger by the moment.  The kid is an active little bug.

I am going to the doctor weekly now and it is pretty dull so far (which is great!).  At my appointments, they are completing an NST each time to double check on baby's heart.  Last week it got a bit interesting as a contraction was recorded during the first 10 minutes.  They had me lay on my side and no more were noticed, so that was good news.  We took the kids to Disney on Ice that afternoon, so I was hoping that the little one would comply ;)

I was feeling a bit different over the long weekend, but with all of us home each day, no traveling, cooking lots and decorating for Christmas, it was no wonder!  I got some rest on Sunday and can feel the difference.

34 weeks--HOLY COW!  I am in shock.  I have 2 more weeks of shots, so we will see if anything starts to shake down once that is out of my system.  With Andy, I stopped the shots at 36 week and he was here at 37.  With Colton, I did the same but he hung out until almost 39.  Who knows with this squirt?!

Other than that, it is pretty boring around here.  I feel a bit like a time bomb waiting to go off.  I am really leaning towards no drugs again this time, since I felt so much better after having Colton , but we will see. Maybe there will not be a choice again this time around?!

I am continuing to read and connect with people in the DS community.  There are so many amazing families out there and it is comforting to not feel alone.  Although, I just feel like going with the flow at this stage, I continue to gather resources and ponder the what-ifs.

This week's appointment is at the end of the week and will hopefully be as boring as the rest have been.  Next week I return to the perinatalogist for a growth check and to complete the echo (apparently there were a few parts of the heart that they couldn't visualize so well).  I am praying that all goes well again and that baby is continuing to grow on track.  Dr. Drake said last time that it is not uncommon for a baby with DS to stop growing later into pregnancy, at which point they are delivered early.  Hoping baby remains around the 55th percentile!

Hoping that everyone had a fantastic holiday with family and friends.  We missed seeing everyone but know that we will get to see our loved ones soon and be able to introduce them to the littlest Jacob around. :)

Tuesday, November 20, 2012


We have been keeping a gratitude journal here at home and it has been so fun to see what the kids write about.  They take turns each day and have such different ideas of what to be thankful for. I love it!

Each day I continue to think about how grateful I am that our little one is staying put and growing big and strong so that we can bring the little one home right away.  I have been nesting like crazy and now that my sister and niece have moved out, I am getting the basement all ready for the fun coming our way!

We are also in the process of telling more people in our lives what is going on with baby Jacob and what we have in store.  It is such a nice feeling to hear the kind words from those around us.  I feel like we have so much support and cannot wait for baby to feel the love of those around us! 

When we first received the diagnosis (almost 3 months ago!), I wanted to shout about it from the rooftops - I was not afraid of it and I could not wait for everyone to be as excited as we were about our little one.

Then, I heard a few interesting reactions.  Then I read online.  Then I read more online. Then I started to freak out and really started to think about how others might react.  Maybe we weren't having the reaction that we "should."  Maybe we weren't being realistic.  Maybe we should keep this to ourselves.

Now, rather than shouting it from the rooftops, I am letting it out as if I have a large balloon that I release a bit at a time.

After much more reflecting, we have such a tremendous sense of peace.  There have been so many signs along the way and it continues to amaze me when I feel called to share the news with someone new to our story.  Each time there is a connection or unconditional support that comes from the conversation.  And even if it isn't clear to me now, I believe many of these conversations are seeds being planted for the future.  

I am so happy to share that after telling someone this week, they mentioned that they never would have guessed that anything out of the ordinary was going on.  That encouraged me so much.  I do not want anything to take away from this incredible gift of life and I hope that all of this love and support permeates every part of being and the little one's. Not to pat myself on the back, but I am more impressed with myself lately.  I am already learning so much from this baby as I am taking things much more in stride and focusing on the big picture much more.  Life really is short and what you make of it.  Cliches as they are, sometime they are more true than we know.

This week I am excited to share with more family what is going on.  I am sure there will be varying degrees of belief and understanding, but I know that there will also be love and acceptance.  We are sad to not be traveling to spend time with family and friends this week (I can barely get to the mall comfortably in the car!), but I also see this as a fantastic opportunity to be together as a family. 

Who knows when everything will turn to chaos again here?!?! 

Wednesday, November 14, 2012

Weekly appts!

Well, I am now on weekly appointments, but for baby, not me this time around!

Each week they will do a non-stress test (NST) where they hook me up with the belts and monitor baby's heart for a bit of time.  I didn't know it was starting today and Colton was such a trooper while we chilled out for 20 minutes.  He is not a tv/video kid, but thankfully sat with me and watched Cars this time.  What a sweetie!

I am feeling great with the exceptions of heartburn and exhaustion.  Although, I think the latter just comes with the territory of being a parent.  We have had some head cold stuff going around here, so I will be grateful when I can breathe all night peacefully, too. 

Other than that, I not much to report on.  Which is such a blessing in itself.  I can hardly believe this is what a "normal" pregnancy is like!  Good thing it took 4 times, otherwise we might have a million kids by now :)

The only other thought I will leave those of you following this with today is a word: PERSPECTIVE.

I woke up the other night with a TERRIBLE dream/nightmare.  It was so real and vivid, it took me a bit of time to realize it wasn't reality.  B even said I was crying in my sleep.  I dreamed that we had the baby and the baby didn't make it. It was quite early and weighed 3 lbs and they did all they could.  I still can picture in my mind the moment in the dream where we just held baby and sobbed.  It was so unfair.

On the birth boards I sometimes look at, there are parents who are debating terminating pregnancies due to medical concerns.  I am still shocked at how many share they are terminating based on the diagnosis alone of DS.  No other medical concerns.  Just an extra chromosome.  I just don't get it or agree with it.  I know some who read this will not understand my perspective, and that is just fine, but my blog, my opinion, right?

This all leads me back to PERSPECTIVE.  Last year Kate lost a classmate to secondary leukemia he developed after his battle with Neuroblastoma.  Eli was a first grader and they discovered a large tumor when he 3 and a half.  I have not personally talked with his parents much, but one thing I know from following their story is that they would not have traded the time they had with Eli for anything.  I feel confident saying they would not have decided not to have him even knowing what lay ahead for their son and their family.  They believed that Eli had a great purpose here on Earth.  His journey was much shorter than I am sure they hoped for, but he accomplished incredible things here. 

The message that comes to me is this: a life has a purpose and it is not ours to decide.  Most decisions about parenthood and children do not come easy.  I believe that is on purpose too.  Our children are too important.  They deserve our thoughtful decisions and time and efforts.  They are where most of my learning honestly occurs in life and I cannot wait to see what life's lessons I am in for with this new little one's arrival.  It also scares the crap out of me because I know my many faults will surface in this time, too. (as if they don't already!)   Praying I can see it, or that some loving soul will, and I will grow too!

Tuesday, November 6, 2012

Fetal Echo

Wow!  What a fantastic appointment today.  The sonographer was awesome.  The doc's nurse was awesome.  The doc was awesome.  I felt such a sense of relief and comfort knowing that baby and I are in the right place right now.  Incredible.

So the fetal echo (a more detailed heart ultrasound) took about an hour.  She checked over baby's growth and my other concern areas, too, which were all ok.  No more kidney dilation!  Still no nasal bone.  Baby was VERY wiggly the whole time and I felt like a bit of a contortionist as I moved into various positions so the tech could get a better look.  I can surely see why they like to do these tests earlier on--baby is just getting too big and squirmy in there!

What we found out:
  • Baby is growing on track so far.  Up to 4 lbs 3 oz, which is in the 55th percentile.  This is great news and was reassuring because when Kate was born at 32 weeks, she weighed 4 lbs 8 oz.
  • The structures of the heart all appear to be present. (4 chambers, inputs and outputs and valves)
  • No holes were detected!
  • There is a bit of fluid around the heart.
  • The right heart wall is still thickened, but does not appear to have changed since the last scan.
  • Baby has some hair already!!  I will upload the pic in a little bit, but the old wives tale about heartburn and hair is SO TRUE for me :)
  • My cervix is incredibly boring this time around.  (much to the mother and mother-in-law's dismay.  I think they miss the cervical updates!)
Baby's hair!!

What next....
  • Doc recommended non-stress tests (NSTs) on the baby every 2 weeks starting next week.  This will keep track of heartrate and rhythm and screen for any other issues that might arise.
  • Doc recommended a follow-up growth scan in 4 weeks to check baby over again and ensure that all is still on track.  If there is significant growth change, this could indicate a need to deliver early.
  • IF concerns for baby come up that are heart-related, I may need to deliver at our original hospital because the new hospital does not have pediatric cardiologists on staff.
  • Once baby is here, they will perform many more diagnostic tests to see what is really going on and causing the thickening.
It feels so good to have a second opinion and a plan going forward.  The amount of time the doc spent going over everything and my history and the future was wonderful.  She expressed concerns about delivering late (ha ha ha, seriously!) and I told her the OB and I already discussed inducing at week 39 if baby had not arrived.  {I will be SUPER SHOCKED if that happens, btw!}.

Next week I meet with the OB to go over everything and I am so excited.  This pregnancy has been such a different experience and I am so grateful to have found this OB practice and set of specialists to support us in all of it.  It has truly made a scary and worrisome experience so much easier to handle.

It was very difficult to change medical systems and doctors for me, but it sure is proving to be the right choice!  I have a true sense of peace about all that will happen with this little one.  We have done all we can to ensure a great start for baby and are as prepared as we could be.  I really am enjoying this pregnancy and so looking forward to meeting baby!!

I am just over 31 weeks, so about 8 weeks to go!