A Baby Named Beckett

About a month ago, I received this email:

I just felt compelled that I had to write to you…. I don’t know what I expect or maybe I don’t, but your story and that of your son Matthew has given me the only hope I can find.  We are currently expecting our 3rd son, and I am 20 weeks into the pregnancy.  We have had abnormal blood work, abnormal ultrasounds, cardiologist consults, you name it.  It seems we are probably looking at having a son with down syndrome, though we have had 2 unsuccessful amnio’s (my sac is not fusing with my uterus properly).  We have been informed he has a complete unbalanced AV canal defect, coarctation of the aorta with small stenotic aortic valves, and hypertrophic left heart (as Matthew had)… We found out 2 days ago that he also has bilateral club feet.  I am so overwhelmed and just feel that we are living his death sentence daily.  We will have continued fetal echocardiograms, but things look grim.  I am so blessed to have read your story to see that he might have a chance with prayer and miracles.  I pray that we are as fortunate as you, and wish you and yours the best life can offer…  Michelle

Since then, Michelle has kept me updated with emails, and we were even able to talk on the phone late one night.  She has given me permission to share her story with you, and is asking for your prayers for her family and baby Beckett.

I’ve talked with a lot of expectant parents since starting this blog, and am so grateful that Matthew’s story has offered hope to so many.  But, I’ve never heard a story that mirrors Matthew’s journey as closely as baby Beckett’s does.

Michelle is a pediatric nurse practitioner – well versed in the medical aspect of all of this.  (I now truly believe that God sent me to get my medical training for a very specific reason, who we named Matthew.)

They came to many of the same conclusions that we did at that point – comfort care, an unmonitored delivery without C-section, love him for as long as we have him … but let God decide when and how He takes this baby home.

But, just today, they received news that is so much like our 2nd visit to Seattle Children’s, it’s uncanny.  It’s the peculiar mix of good news and bad news that leaves parents reeling.  Beckett’s left ventricle has grown a little, making him a borderline, unknown case of whether it could be functional when he is born.  He also has a pesky valve flap that, if it doesn’t straighten out, will make a repair impossible.  They just have to let him grow, and wait and see.

For Michelle and her family, this means that instead of a comfort-care baby and delivery, they now face the scary possibility of C-section, surgical team, cardiac team, hospital ethics committee, etc etc.  It really turns everything upside-down.

For me, the remaining weeks of my pregnancy were the most difficult part of our journey with Matthew.  There’s a reason I never wrote “Chapter 5” of our whole story … it was just too hard.  It was a dark and difficult time, full of worries and unknowns.  Having a baby who is going to heaven sooner than you’d like is terrible – but so is having a baby who has to face multiple, risky painful hospitalizations and procedures.  And not knowing – or having to make that decision for your child – is something no parent should ever have to do.  During that dark time, I couldn’t even fathom a third option: a healthy, beautiful happy and delightful boy, who aced his way through only one heart surgery.

Please pray for Michelle, her husband, and baby Beckett.  Pray that they will have peace and clarity in all the decisions they will need to make, for strength in this difficult time.

If you want to leave them a note of encouragement, or let them know that your prayers are with their family, you can leave a comment here.  She’ll be reading this.

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Mother’s Day

My Mother’s Day had a rough start.  Matthew woke up screaming, so I rushed into his room and found him sitting with the humidifier spilled all over him.  The boys have had a cold, so I had the humidifier going, as I often do, to help them breathe at night.

After stripping off his pajamas and running cold water on him, it looked like his right leg was badly burned.  We took him to Urgent Care, and got him bandaged up and pain medicine prescribed.  His only burn is his right thigh, but it has painful, blistering, second-degree burns.

It was a danger we’d never thought of.  We’ve been using the humidifier for years without a problem … but Matthew is no longer in a crib.  We opted for the hot-steam humidifier over the cool-mist variety to avoid spreading mold and bacteria in the air, but we may be going without either for awhile.

After that, my day improved, though.  My boys spoiled me – Aaron was very thoughtful, as always, and Micah lovingly created many home-made gifts for me.  (I only feel a little bit guilty that my favorite part about Micah’s gifts were the hours it took him to make them the week before … hours that he was quietly and happily coloring and cutting paper alone, because I wasn’t allowed to look.)

We spent a relaxing evening with my parents, making me realize once again how blessed we are to have the families we do.

Our First Taste of Summer

We’ve had a few days of beautiful weather, and have been enjoying them very much.

We MAKE Micah wait until the thermometer reads 70-degrees before he can get out the pool … because we’re mean parents like that … and because he asks to get the pool out the first sunny day in February.

Last Wednesday, our thermometer read 77.  Pool time!  All 3 boys had so much fun, I had no choice but to put aside cleaning, chores, and other tasks, and spend the afternoon just soaking up the sunshine and my 3 beautiful boys.  And, there is nothing I’d rather do!

They took turns going down the slide, each time cheering for the brother whose turn it was.  For over an hour, my backyard was filled with gleeful cries of “Yea, Micah!  Yea, Matthew!  Yea, Jesse!”

Even when Matthew got cold, he continued to cheer from the sidelines.  I can’t tell you how much I loved hearing that little guy cry out, “Yea! Kia-ka!  Yea! Yeh-Yee!”

The sunshine did us all a lot of good.  It’s going to be a fun summer.

After these pictures were taken, I decided to try to plant a few things in our back “garden.”  Jesse decided to combine my gardening project with their pool fun … and the result was quite a muddy mess.  Fun, though!

Easter 2011

My handsome boys

Micah, age 5

Matthew, age 3 1/2

Jesse, age: 20 months

(also known as “age: I don’t hold still for pictures.”)

Yes, the “Easter Bunny” brought Micah a dart gun.  A dart gun, and a sweet, cute, soft and cuddly stuffed bunny.  Hmmmm.  He loves them both.  “I can’t sleep without Snugglebug!” is heard just as often as “Let’s go shoot something!”  I’m really enjoying age 5.  It’s lots of fun.

Micah asked for Daddy’s hunting gear, so he would be properly outfitted, then set up a target on the swing set.  The next week, Daddy used his “own money” to buy himself a matching dart gun, so they can hunt together.