Parenthood. Life. Down syndrome. Faith.

My life changed a lot when I found out my 3rd child would be born with Down syndrome. But then again, it really hasn't changed so much.

We're still living life, trusting God, raising our kids, and loving having a baby in the house.



Monday, June 16, 2014

It's a small world

It's a small world, this world of Down syndrome.  When one of our members is hurting, we pass around the word until we all know about it.

When I wrote "Healthy Redefined" the other day, I had no idea what was about to happen.

Then the news started hitting my Facebook feed.

Ryder, from Upside Downs in Australia, had suddenly died on Wednesday of meningococcal.  As I paged through the photos and updates on his Facebook page, my heart grieved such a loss.

Then, the same day, more news.  Fiona was critically ill.  She'd just gone home from the hospital Wednesday night.  Thursday she was back in the hospital.  And Friday she was gone.  I sobbed as I read the journal entries on her Caring Bridge page.  Another of our community, gone too soon.

And Friday, oh Friday.  The news just kept coming.  This time it was Annie, a girl whose story I've followed loosely for a few months.  She had heart surgery in February that was not successful.  She needed a heart transplant but is ineligible due to her Down syndrome.  And so her parents brought her home to have the time they could have.  A time that is now drawing to an end.  All weekend I've checked her Facebook page relentlessly, hungry for any sign that she's improving.  She is not.  Within a day or so, Annie too will be gone.  It has been an honor of sorts, watching as Annie fades as her parents share their most intimate last moments with their daughter.  And gut-wrenching, especially as I consider that, as far as I know, a heart transplant could have saved her life.

So tonight, Monday, I pray for Annie and her family again.  I pray for a miracle.  I pray that if a miracle isn't God's will, that He would take her gently, free from pain.

I cry for us all.  For us in the Ds community who've suffered together through this very hard week of loss.  For us who parent children ineligible for organ transplants.  For us as a nation who values so little the lives of our most vulnerable.

Life = Healthy

That's what I said a week ago, and I stand by it now.  Each of these parents would rather have their child here on earth, "healthy" or not.  Alive is all that matters.  Life is precious.  So very, very precious.

UPDATE: Annie went to Heaven on Wednesday, June 18, 2014. I won't post her last photos, out of respect to Annie and her family, but her final photo had such peace and beauty.  It was as though we were seeing Annie's true self restored.  If you would like to help her family with funeral expenses, here's a fundraiser: Annie's Fund.


Ryder

Fiona

Annie



How to help?

Fiona's family creates baskets for families who have extended hospital stays.  Donate to Fiona's Hope Totes.

Sign this petition.  Children with Down syndrome are not considered eligible (worthy) of having organ transplants.  This petition is the first step to changing this so that all children can be eligible of receiving life-saving medical treatment.

Saturday, June 14, 2014

My Pet Project

Every mom needs a pet project.  (Right?!)  As Cade approached his first birthday, I felt strongly that I wanted to do something to advocate and encourage new moms and dads who've just had a baby with Down syndrome.  Then a friend posted a photo of a welcome basket she received in the hospital.

After thinking on the idea for a couple of months, I set up a GoFundMe page to collect donations and we were off and running.

Here's what I've done.  You can do it, too.

Collect Donations
I couldn't afford to build the baskets myself, so I thought I'd ask friends and family for some help.  I chose GoFundMe as the donation collection website.  They accept credit cards, which was nice.  If I did it again, I'd try to find a site that also accepts Paypal.  GoFundMe does take a percentage of donations (but they all do).   I asked around to find out how many babies are born with Ds in our area each year.  I wanted to fund-raise once, buy once, and build once.  Ten baskets should last a year, so that was my goal.  Then I made lists of what I thought should go into the baskets.  I played around with items and costs until I hit my magic number: $50 per basket.  So my goal was set...I needed $500.

I was very blessed in that my friends and family were more than happy to help.  Within just 2 days, my goal was surpassed.  Time to buy!

Choosing & Buying
Every item I chose for the baskets has a purpose.  I polled my friends to make sure I was on the right track.  Two local friends, Tami and Teresa, helped me choose the books and make sure I wasn't wacky about how we were doing this.

I have one buying secret that most of you won't have...I own a baby store.  I planned to utilize my wholesale discounts wherever possible.  Also I planned to ask some of our vendors for donations.  You may not have the contacts that I do, but you can still reach out and ask for donations.  I found that if I limited the number...just 10...companies didn't mind sending a donation.

Distribution
Some hospitals will call a local organization when a new baby is born and allow a visit from that organization.  But others, like ours, will not due to privacy laws.  We have two local hospitals.  For the first, I called the lactation consultants.  They have an office on the maternity floor and were among the first into our room.  I knew they'd be able to identify new mamas and get a basket to them.  I was right, they're thrilled to help.

For our second hospital, my friend Teresa knows the head nurse.  She called her friend and bingo, another hospital thrilled to help distribute baskets.  I never dreamed it would be so easy to get the baskets to the moms.

The Goodies
  1. {Unexpected} book - Our own story is in this book, as well as Tami's, my friend mentioned above.  I wasn't sure the book would be ready in time, but happy day, it was!  I liked this book over others because it was specifically about diagnosis stories and it was very, very current.   I waited until LuLu.com sent me a 25% discount code.  
  2. Babies with Down Syndrome: A New Parents' Guide - this book is loved and hated within the Ds community.  Love it because it's very informative, pretty current, and straightforward.  There's very little fluff.  But it's also disliked because it details pretty much every medical issue possible.  This can be really scary for new parents and pretty depressing.  But after polling my friends and talking at length with Tami and Teresa, I felt this was the best choice for an informational book.  
  3. Muslin swaddling blanket - every baby needs one.  Period.  They're so soft, so handy, and work for practically any baby need.  Planet Wise, one of my favorite vendors, donated these for us.
  4. Baby leggings - leg warmers for babies.  These are The Bomb for hospital stays and they're just plain adorable.  These were also donated by Planet Wise.
  5. "My extra chromosome makes me extra cute" Onesie -  I found this on Etsy while I was pregnant.  TOO CUTE.  Sparkles.  I contacted the owner and she was willing to give us a discount on a bulk order.  I bought 0-3 month so that most babies could wear it right away.  Bonus...it matches the blankets and baby leggings.  Score, now we have a whole outfit!
  6. Wubbanub pacifier - I've been a fan of these for years, since my first child was a baby.  Cute animal holds a paci in place.  But I found that with Cade's lower muscle tone, these were very helpful, not only in helping him keep his paci in his mouth, but in developing his muscles needed for suckling.  These were a must-have in the baskets.  My own store donated these and I'm happy to help you include them in your baskets.  
  7. Toy - I wanted a rattle or teething toy.  Our occupational therapist recommends a rattle with a skinny handle or ring, something very easy for a baby with lower muscle tone to hold.  Another of my favorite vendors, Green Team Distribution, carries Green Toys and she was happy to donate some key rings. 
  8. Natural baby wash - our babies have such delicate skin that a nurse in the hospital recommended we use only natural baby shampoos without harsh chemicals.  Thankfully for me, Green Team Distribution carries several lines.  My favorite is Hip Peas and that is what we use in our house for all of our kids.  Green Team donated full-size bottles for us.
  9. Gift baskets - As I discussed ideas with my local friends, I realized that a "basket" wasn't going to cut it.  Too bulky, not durable, and I wanted something easy to store and that would be useful once the families get home.  What's better than a fabric bin?  I found some very serviceable, yet affordable, bins at Walmart.  They had several colors to choose from; I went with a conservative ivory.
  10. Brochures & pamphlets from anyone I could think of.  I contacted NDSS and they sent me some wonderful booklets and congratulations cards written and signed by Chris Burke ("Corky" from Life Goes On).  Chris has Down syndrome but his handwriting is perfect!  I also asked our Early Intervention and she brought some pamphlets explaining when and how to hook up with EI services.  I also printed some brochures from the Down Syndrome Diagnosis Network, a brand new website dedicated to helping families with a diagnosis.

Photos, photos, photos
A blog's just not a blog without photos.  So here you go!










 






For all you've done, and all you do, thank you.  We received 21 donations through the GoFundMe site and 2 from our vendors.  I couldn't have done this without you.  The baskets are complete and I plan to deliver the first ones to the hospitals next week. 

If you want to make baskets for your local hospital, feel free to follow what I've done or email me at heather@321mama.com.  I'm happy to share.

Thursday, June 12, 2014

Healthy Redefined

"Just as long as it's healthy."

New moms and dads have said this for probably centuries.  We don't care whether we have a boy or a girl, just as long as he or she is healthy.  It sounds very reasonable and loving.

But exactly what is healthy?  "Normal"?  Having 2 arms and 2 legs?  I've never thought about this question, never once considered what I really meant as I uttered those same words throughout my pregnancies.

And then came Cade.

When we first found out that he might have Down syndrome, we had a long wait before we found out for sure.  During that month, I often begged God to "Please, just make him be healthy."  And I realized then that when I said healthy, I meant "normal".  I meant that I wanted him to be just like our other two children, typically developing in every way.

And when we found out that he would, indeed, have Down syndrome, my research uncovered a huge list of potential medical issues common to Down syndrome.  Heart defects topped the list...60% of kids with Ds have some sort of heart defect.  A great many require surgery.  Another very common issue is duodenal atresia, in which the bowel doesn't develop quite right.  Also requiring surgery.  And so on.

Quite abruptly, my definition of "healthy" was redefined.  As my pregnancy progressed, "healthy" became "no heart defects".  And then when we discovered that he did have several heart defects, my definition shifted to "nothing requiring surgery".

When Cade was born, most serious issues were ruled out and I announced to the world that my son was perfectly healthy.  Yes, he has Down syndrome.  Yes, he still has a small VSD heart defect.  But he is perfectly, wonderfully healthy.  My prayers were answered 100%.

Now that we're 14 months into this journey, I've met so many mothers from around the world.  My definition of "healthy" has been refined even further.  I've met mamas who are grateful that their babies are alive at all, struggling with Trisomies that are usually fatal, like Trisomy 13 or 18.  Now..."as long as she's alive" seems appropriate.

Life = Healthy

That's my story and I'm sticking to it.


Soooo sleepy...


Monday, June 9, 2014

Lemonade and brick walls

I'm sitting here, sipping lemonade, and hoping to break through the brick wall.  Writer's block.  It started in November when our "one year since we found out about Down syndrome" anniversary rolled around.  It loosened up briefly in March when I was trying hard to write for World Down Syndrome Day.

A lot has happened since then.  A lot, and then again not so much.  Our lives are so normal.  School drop-offs and pick-ups.  Doctor appointments.  And the occasional freak-out over petechiae.

Say what?  Petechi-who?

Me, too.  A year ago I had no idea what petechiae were.  Now I can talk petechiae with doctors.  Petechiae (plural) is small red dots on the skin.  They look like a rash, but when pressed on, a rash will whiten.  Petechiae do not.  They stay bright red.  They're caused by tiny tears in the skin that bleed a tiny amount.

They happen when you drink out of a gatorade bottle and your upper lip gets sucked into the bottle.  They happen when your best friend in 3rd grade gives you an Indian burn.  And they can happen when your child has leukemia.

Kids with Down syndrome have 20 times the risk of leukemia.  

So when I see petechiae pop up all over Cade's body, I freak.  The test is super easy...a few blood drops and a CBC (complete blood count).  But getting blood from Cade is kind of like getting it from a turnip.  Oy.  We've managed enough blood for 3 CBC's over the past 2 months.  Thankfully all have been normal.  No explanation for why he suddenly has petechiae.  When he was in the ER for his broken leg (oh yeah, that's a whole other story) the ER doc was so freaked out by the petechiae that he mentioned it more times in his report than he did the broken leg.  It was ME who assured HIM that Cade was fine.

Cade's also showing borderline hypothyroidism.  He's had a bunch of TSH tests over the last few months.  They've ranged from barely normal to really high.  I think he should be treated for hypothyroidism but the endocrinologist disagrees.  We're at an impasse for now.  I'm allowing it because Cade's not really showing many symptoms yet.

And the leg.  Three weeks ago I lost my Mother of the Year award.  I nursed Cade to sleep in bed, then tucked him in and left him there.  You see, Cade's a terrible sleeper right now.  He needs every moment of shut-eye that he can get.  So when he fell asleep in the big bed, I wanted him to get a good nap and I left him there.  I literally checked on him every couple of minutes over the next 20.  But in between checks, he woke up and rolled once, twice, three times and thumped to the floor.  Within minutes we knew he wasn't just scared, but actually hurt.  Urgent Care sent us to the ER.  ER quickly determined the leg was broken.  Broken.  A hundred people have told me that their kids have rolled off the bed and were fine.  But not Cade.  Was it somehow his Down syndrome that made the difference?  Did he land just right?  Cade was hospitalized overnight while they gained control over his pain and made sure we weren't abusive.  We went home the next day.  Long story sort of short, he spent three weeks in a splint.  They never did cast it and he's fine now.

As if all that wasn't enough, Cade's failed his 6-month and 12-month hearing tests.  After much discussion between the audiologist, ENT, and pediatrician, it was decided that Cade would go under sedation for a special hearing test (an ABR) and possibly tube placement.  So last week, we went back to the hospital.  I watched as they put my baby to sleep with sevoflurane gas.  Then I left the room and they worked on him for 90 minutes.  Most of this was the hearing test.  An hour later, he was awake.  All told, we spent 5 hours at the hospital.  His hearing is fine. 

All of this is just texture on our lives.  Really things are going fabulously.  Cade has his first word.  Mama!  He's the first to say Mama first, and the first to have a word this early.  Camille is finishing her last week of 2nd grade.  She worked hard for the jog-a-thon this year and earned trips to Dairy Queen and Camp Harlow.  Colby just turned 4 and he wants to be Spiderman or a Skylander. 

Without further ado...your Cade pics: