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.

Monday, December 17, 2012

Appt with Peri - only a few more to go!

Today we had our appointment with the perinatologist again for a biophysical profile of baby J.  He scored an 8/8 again in the four areas (movement, movement of a limb, breathing practice and fluid level) so that was wonderful.  But, the fluid was still present around his heart (pericardial effusion) and the heart wall is still thickened.  Although neither seemed worse today.

So what does this all mean?  We don't know. And we won't know until he is out and about and they can perform an echocardiogram on him.  Patience.  Boo!

From the research I've done, it seems as though the thickened heart wall and fluid are each things that could be symptomatic of something else going on.   Or it could be just the way that his little body is.  Time will tell, though.

The question I asked the peri today was what is in store after he is born.  Especially in terms of the NICU.  I did not like the answer. 

We got the feeling that a NICU stay, of some length, is very probable.  Yuck.  We did the NICU for 30 days with Kate.  30 days. Not holding her much.  Not nursing.  Not being a mommy to her. 

AND we didn't have other kids at home.  I was able to spend every waking hour next to her. 

Although the NICUs have changed dramatically in 7 years, I know it will still be very hard.  Our first experience included Kate being in one of three rooms with isolettes lining the walls.  Our "private" time with her included a folding curtain that just fit around the rocking chair they would bring in. 

Now I understand babies have their own rooms where parents can actually spend the night.  I was hoping to never really see this for myself.

I am now realizing that I should really be preparing for this likely reality.  Double yuck.

We are so fortunate to have family and friends that have offered much support and love during this time and I am grateful that there are people I can count on if this comes to be. 

It is interesting how the DS diagnosis truly takes a back seat to everything else.  Yes he may look "different."  Yes he may meet milestones at "different" intervals.   Yes he may have a variety of challenges.  But he is our son and I just want him to be here safely.

The message at church this weekend was about peace.  The core:  peace is not the absence of struggle; it is the presence of love.  Whoa.  I thought I was at peace with all this because I was not freaking out daily anymore or googling or worried at every appointment.   Now I realize I was at peace with all this much sooner.  I loved this little guy with all my heart from the first moment we realized he would be in our lives.


This is the season of peace and love and I just can't think of a better way to celebrate the birth of Jesus with our kids.  Welcoming our own little one that will also teach us so much about love and life. 

My prayer is that our kids will manage this all well and that we can continue to have family time in the midst of the chaos.

My prayer is really that the little guy arrives and there is no reason for him to visit the NICU.  That we can bring him home and continue on the journey that awaits.

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