Thursday, September 10, 2015

The Rainbow Connection

A rainbow baby is a baby born after a miscarriage, stillbirth, or infant loss.  We had never heard the term before Obie.  The first time someone said it to us was when the Now I Lay Me Down To Sleep photographer was at our house.  She said we could reach out to her if we had a rainbow baby, and we had to ask her what she meant.

It's important to remember that in this metaphor, Obie is not the storm.  Losing him was.  Obie brought sunshine into our lives from the very beginning.  He changed the way we see the world.  Losing him cast a gray cloud over everything, and at times it felt like we'd never see the sun again.  It's weird to talk about a storm as a metaphor for losing Oberon, because we both kind of like thunderstorms.  The soothing rain and thunder, the exciting lightning.  We were thrilled that it rained when Obie was home once, so he could hear the rain.  But in this case, a storm isn't something to enjoy.  It's something to weather.

After a storm, we hope for a rainbow.  A rainbow doesn't erase the storm that came before, and certainly doesn't erase the sunshine that came before that.  What it is, is a sign of hope for the future.

A rainbow from our Kaua'i honeymoon in September, 2012.

We know a rainbow baby won't replace Obie, but we also know that we are ready to be parents to a living child.  With that in mind, we want to cautiously announce that we are expecting our rainbow baby.

In Chicago, July, 2015.

It feels like putting some pressure on this baby by calling it our rainbow baby.  But at some point, we need to start being a little bit optimistic.  We aren't necessarily thinking about the future with lil' beastie very much, but we also aren't constantly expecting everything to go wrong.

Pregnancy after a loss is hard.  In addition to the physical symptoms, there are exhausting emotions.  We are trying to find a balance between grieving and remembering Obie, and preparing for the lil' beastie.  No matter when we got pregnant again, we knew we would be missing Obie every day, so it didn't make sense to us to wait any longer than the doctors made us.

We recently got back home from a trip to Michigan.  It was nice to see many of our family and friends that we haven't seen in months (or years).  One of the most important things we did was attend the Giving for Obie event at the Tilted Kilt in Sterling Heights.  Elizabeth's parents worked with the restaurant to set up the event, and a percentage of the bills from our attendees went to Obie's favorite charities.  It felt good to honor Obie in this way and to visit with the people who could make it out.  There were close family members, extended family members, old friends, new friends, and friends of friends.  It's amazing and comforting to have this kind of support for our precious son.  All in all, the event raised over $2,000 including the bill percentage, an extra donation from the Tilted Kilt, extra donations from some attendees, donations from people who couldn't make it, and some matching from Elizabeth's parents.  It makes us proud and happy to be sending this money along to help families like ours.

  Buttons that Elizabeth's mom made for the Giving for Obie event, plus some of Obie's Bees that were given to us.

Another special thing we got to do was take fancy family photos with Obie's aunt.  These are the first pictures of our family of four - Chris, Elizabeth, Obie bear, and lil' beastie.

Our attempt at a family feet picture.

 The four of us, photos by Sandra Joanne Photography.

Sometimes it can be overwhelming to talk directly about Oberon and how we're feeling.  This is especially true when we are with the people in our lives we are closest to.  Oberon should be with us, and with these people, and it hurts so much that he isn't there.  Just because we aren't talking about him, doesn't mean we don't miss him.  It just means we can't take on the direct emotions at that moment, and maybe it means we can't take on someone else's grief right now.  That's one of the reasons the support groups we've been going to have been helpful for us.  Everyone in these groups is grieving a lost child, and that means we understand each other in way other people can't.  It doesn't mean we don't appreciate hearing when our loved ones think of Oberon, or how he has impacted their lives.  It just means maybe it's too much to talk about face to face.

We really do appreciate the support we've been getting from friends and family through this grieving process.  There are some really bad days and some better days.  Every day we miss Obie.  Every time someone brings up Obie to us it brings us a little comfort, even if it brings tears too.  He is our son and we love him all the time.

Some more information about this pregnancy for those who want to know:

When did you find out about lil' beastie?
May 16th, 2015.  Although we didn't know it at the time, Elizabeth has been pregnant for the last two Mother's Days.  We knew it both times for Father's Day.

Hiking Mission Peak in Milpitas, CA.

When is the due date?
January 18th, 2016.  Elizabeth is 21 weeks along.

What are the doctors doing differently this time?
Not a lot.  They don't really know what caused Obie's brain development issues, so it's a lot of watchful waiting.  They are checking lil' beastie's brain carefully at every ultrasound visit.  We visit the perinatologist (high risk doc) at least every four weeks.  Just like we did with Obie.  We have the same doctors this time around, and they are all very willing to see us for extra visits whenever we need some reassurance.

Because Obie was born preterm, Elizabeth is getting weekly progesterone injections.  Chris even had to give her one when they were in Michigan (he did great),

What tests has lil' beastie had so far?
  • We've finished the California Prenatal Screening Program, and lil' beastie's results are all screen negative.  That means the risk of conditions like open neural tube defects, Down Syndrome, trisomy 18, and Smith-Lemli-Opitz Syndrome are low enough that no additional diagnostic tests are indicated.  This is the same result that Obie had.
  • A few weeks ago we had the second trimester anatomy scan.  This is where they found Obie's omphalocele.  They didn't find any abnormalities when scanning lil' beastie.  They looked closely at the brain, heart, and tummy.  Even so, the ultrasound technician and our perinatologist will keep close watch at future visits.  
  • We had an amniocentesis at the same appointment as the second trimester anatomy scan.  The results also came back with no abnormalities.  Lil' beastie has the usual number of chromosomes (none extra, none missing).  This confirms no Down Syndrome, trisomy 18, or trisomy 13.  This does not rule out other genetic conditions caused by mutations.  This is the same result we got with Oberon.  In fact, the follow up testing done on Oberon's blood didn't find any genetic cause for his Beckwith-Wiedemann Syndrome.
  • One test we declined was the fetal MRI.  This test can show a clearer picture of the baby's brain.  After discussing it with our perinatologist, we decided against getting this test for now.  Ordinarily, an abnormality would need to be found on an ultrasound (or an inconclusive finding) to trigger a fetal MRI.  The only reason we were talking about it at all was because of Oberon's brain development issues.  It's possible that his issues developed later in the pregnancy, so we are going to monitor it closely on ultrasound, and only if we get some indication that something is abnormal will we consider a more intense diagnostic test like a fetal MRI.    
  • There aren't any more big tests on the horizon (except the gestational diabetes test for Elizabeth), just checking in on lil' beastie at least every month.

What kind of symptoms is Elizabeth having?
Just normal pregnancy stuff.  She has some digestive issues, sleep disruption, and exhaustion, but nothing too bad.  She's not having as much low back pain as she had with Oberon.  We are still able to hike, but we have to take it a little easier and make sure we have some shade.

She's also not feeling a lot of movement yet.  She has an anterior placenta which makes it a little harder to feel, but the flutters have started.  Hopefully Chris can feel lil' beastie soon!

Do you know the sex? 
Yes, and now so do you.

It's another boy!

Obie has his bees, does lil' beastie have something like that?
Yes, he has his dragonflies.

One of lil' beastie's dragonflies.  Sandra Joanne Photography.

How can I stay up to date on the lil' beastie?
You can follow Our Little Beastie Blog by entering your e-mail address on the upper right of this page.  We'll start posting a little more often about both Oberon and lil' beastie.

Elizabeth also has a weekly Bump Day Blog over at Pregnancy After Loss Support.  These posts are generally about the emotional journey of being pregnant after a loss.