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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Urgent Prayer Request

UPDATE:  Because the NICU at Children’s Hospital is full, Janessa will not be induced tonight.  They will let her know on a daily basis if there is any room in the NICU, and when there is a place for Edward, she will be induced.

. . .

My husband’s brother, Adam, and his wife, Janessa, are going to have a baby tomorrow.  They are going into the hospital tonight to begin induction of labor.

They have known for awhile that their baby boy, Edward, will have some unique challenges to overcome, as he was diagnosed with arthrogryposis (severe contractures of his arms and legs) at their 20-week ultrasound.

However, more recent tests have shown that his difficulties will be more severe than they originally thought.  Swelling of his face and neck, deformities of his jaw and chest may cause severe breathing difficulties.

Please pray for our nephew today.  And, please pray for his parents, too.  They may have some difficult decisions to make, and are asking for guidance, clarity, and peace throughout this difficult journey.

Just Another Wednesday Night

Lullaby, sweet baby.

Lullaby, little one.

Know our time together has just begun…

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Sometimes we are reminded that our time with Matthew – time we once thought would be very short – has really just begun.  And, more importantly, God’s work in him and through him has only just begun.  The miracle of Matthew was not finished with healing of his little body.  God has big plans for our little boy, and sometimes we get a small glimpse of that.

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Wednesday evening, I was carrying Matthew down the hall on the way to put him to bed, when we reached out his little hand toward a photo on our wall, and said, “uh.”  That’s his way of saying, “I want!” so we stopped to look at the picture.  It was a portrait of my brother’s family.  Matthew signed “baby,” and pointed to their littlest girl, then to all the cousins, and as he pointed, I narrated as usual.  “Yes, that’s baby Teresa … and Dominic, and Catherine, and Christopher, and Marianne, and Bernadette, and Uncle Ken, and Aunt Danielle.”  Satisfied, Matthew held out his pudgy little hand and indicated the whole family.  “Your cousins,” I said, and he nodded.

You see, that is the method of communication that works best for us right now.  Matthew signs or gestures, and I narrate.  If I’m right, I usually get a nod, or at least a look of “yes, Mommy – you are right, and you are understanding me.”  If I’m wrong, I usually get an emphatic, “no!” or shake of the head, and he signs again.  He’s pretty good at making himself understood.

After naming all the cousins, Matthew put his hands together.  I wasn’t sure what he meant, but I guessed the only sign I could think of:  “Pray?”  Matthew nodded “yes.”  He pointed at the picture again, signed “pray,” then put his hand on his chest: “Matthew.”

“They pray for Matthew?”

yes,” he responded with an enthusiastic nod.

I was a little stunned, but Matthew was satisfied that I had understood what he was trying to tell me, and was done looking at the photos on the wall, so I put the little wonder to bed and promptly called my brother.

“I have to tell you what happened here tonight,” I began.  I explained that Matthew just doesn’t put things like that together – a full sentence, especially when we hadn’t been talking about prayer or their family, was quite remarkable.  In fact, I hadn’t ever seen him sign “pray” except at the dinner table.

“How long ago was that,” my brother asked.

“About 20 minutes ….. why?”

“Well, we finished our family rosary about a half hour ago, and Matthew was our intention,” he replied, not surprised at all that Matthew knew of their prayers for him.

To all of you who have kept Matthew in your prayers:  Thank you.  Somehow, I think he knows – and he has shown us that prayer is more powerful than we had ever imagined.

Matthew, I’ve said it before, but I just want you to know what an honor and joy it is to be your mother.  xoxo

An Answer for my Self-Doubt

Lately, I feel like I’ve been “surviving.”  We get through our day-to-day tasks, everyone is clothed and fed and diapered, the house is presentable (most of the time), and laundry is clean, if not folded.

But, things are busy.  Three boys 4-and-under comes with a lot of little needs that need to be met, and I’m very busy simply taking care of those needs.

And…… the “mommy guilt” creeps in  —  the self-doubt that eats at me, telling me I’m not quite good enough – not quite doing enough.  Yes, my children are happy, but are they nurtured enough?  Stimulated, played-with, taught, read-to, and prayed-with enough?  After diapers are changed and breakfast is cleared, it’s time for lunch, then naps, then dinner, then bed – and where did all the in-between time go?  You know – the time I always intend to play, to teach, and to nurture?  The time seems to have vanished, and I am left with the guilt – the wondering how I can do more for my children – especially my special-needs child.  Maybe if I just spent more time working on language activities with Matthew – maybe he would talk more?  Maybe if I just spent more time working with his picture boards, maybe he would use them to communicate with me?  Maybe if I could just do more …

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Today, neither Jesse nor Matthew went down for a nap.  Jesse slept for 20 minutes in the morning, and thought he was set for the day, and Matthew fussed for a long time in his crib, never settling down – very unusual for him.  So, I decided to load up the ‘babies’ and take them for a drive, hoping to lull them both into a restful, peaceful sleep, while giving Micah some much-coveted “Daddy time” at home.  Jesse fell asleep right away, while Matthew happily and quietly enjoyed the ride.

Using my quiet time to pray, I started to unload my heavy heart, telling God everything:

Lord, please give me the strength and energy to be the mother You created me to be.  Am I teaching Micah enough?  He is so inquisitive – wants to know everything, and learns so quickly.  He wants me to spend more time reading to him, coloring with him, playing with him … but I’m so busy taking care of other things – sometimes I feel like I can barely take care of everyone’s basic needs.  And, what about Jesse?  What am I supposed to be doing to play with and stimulate a 9-mo old, anyway?  I’m so busy with the other two…   And, my Matthew.  We’re starting to feel ‘stuck’ again.  How do I do enough for him? Do we need to add private Speech Therapy?  Am I right to pursue the sleep apnea issue?  How can I stimulate him more, teach him more?  How do I give Matthew everything he needs?

Right then, I was interrupted by words that were so clear, so definite, they were almost audible:

“I have already given Matthew everything he needs.  I gave him you.”

My breath caught in my throat.

A prayer so clearly, so quickly answered – and not at all expected.  The road was starting to look blurry … An overwhelming sense of peace.  A weight lifted from my shoulders.  The best validation I could ever receive, and an incredible reminder that He sees me, in my everyday, ordinary tasks of caring for my children; that He cares for me and loves me, and that we are all in His hands.

And, that is everything I need.

He is everything I need.

Annual Cardiology Check-Up

Yesterday was Matthew’s annual cardiology check-up.  Height: 2’7″   Weight: 23 pounds.

The first thing Dr. Anderson said when he walked in the room was, “How is Miracle Matthew?”  I really appreciate that he always remembers, and comments on Matthew’s miraculous healing.

Matthew cooperated very well for the echocardiogram – he just relaxed, sipped on a bottle, and watched the “Baby Einstein” video up on the screen.  ( … not my favorite video series, but that’s a topic for another time!)

During the echo, the technition said, “So this is Matthew!  His name has been brought up at many a cardiology conference.  I looked back in his file – it’s really interesting to read the surgeon’s reports … he has had quite a journey, hasn’t he?”

It was a good reminder to Aaron and I that he really is a miracle, and that, at one time, his heart really was that bad.  Sometimes our journey seems like a bad dream … the memories a little foggy over time (or maybe we were just living in a constant foggy state?  That could be true, too.)  Living with Matthew every day, we often see him as “Matthew the Menace: a force of destruction like you’ve never seen,” and forget that it’s a true miracle that he is able to be a menace at all.  Cardiology appointments are good reminders that he is Matthew the Miracle:  a gift from God.

The test results?  His heart still looks good – the patches are doing well, and there are no adhesions (extra tissue bands) around the valves, which can sometimes form after surgery.  His mitral regurgitation (valve leakage) is “mild to moderate,” but not significantly worse than 1 year ago.   If the leakage causes the left side of his heart to become enlarged, he may need a valve replacement down the road.  For now, though, the left side of his heart looks just fine.  Considering that 2 1/2 years ago, we were told the left side of his heart was too small to support life, it seems ironic that now we’re worrying about it being too big.

There is nothing we can do about it, though – except to keep praying.  Matthew is in God’s hands, as he always has been. 

…and that’s all the heart news until next year!

Something to Smile About

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Jesse’s appointment at Shriner’s yesterday went very well.  We had no problems taking the airplane, and it was great to give me a break from all the driving.

Jesse’s left foot looks fantastic!  I’m amazed by the visible difference each week.  Dr. Aiona is almost positive that he will not need the Achilles tendon surgery, but will do X-rays at our next appointment just to be sure that all the bones are lining up correctly.  From the way his foot looks, though, he said he would be shocked if things weren’t just perfect!

We are praising God, doing our “happy dance,” and are so very thankful for this great news!  Thank you for all of your prayers, too!

He said that we are done correcting the position of Jesse’s foot – it is turned out nicely and can flex to 90-degrees or more now!  Hooray!  Now, we just need to hold it in that position for awhile so it doesn’t revert back.  That means that this cast (#5) gets to stay on for 2 weeks.  Then, we’ll do the X-rays, and if everything looks o.k., he’ll get another 2-week cast – his last!  After that, he’ll be fitted for braces.

So, it looks like no surgery, only one more cast, and less frequent trips to Portland…

And that is definitely something to smile about!

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Was it really only a year ago?

My little Matthew,

Just one short year ago, you were such a different baby.

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You were so sick, so fragile, and just didn’t have the energy to do much at all – including eat for yourself.  Yet, your smile was so sweet, and your eyes sparkled with a life that we loved more than you’ll ever know.  The fact that your future was so uncertain broke our hearts.

But, one year ago today, that all changed.  On May 7, 2008, a skilled surgeon repaired your heart – a day I once feared and dreaded, but now I will always treasure.  You sailed through the surgery, recovered more quickly than we ever thought possible, and immediately embraced life with fantastic energy and vigor.  You have come so far in the past year, that it is hard to believe it has only been 12 short months.

Now, look at you!

oops – where did you go?

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Oh!  There you are!

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You are constantly on-the go, walking (working on running!), climbing, playing, laughing, and getting into whatever kind of trouble you can find.

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You immediately win over every person you meet, earning lots of laughs by showing your muscles.

Matthew showing off his "muscles" with a friend

Matthew showing off his "muscles" with a friend

Your sense of humor is fantastic, and you love making others laugh.

You can communicate many things to us, using sign language to tell us when you are hungry or thirsty, want more or are all done, or want to take a bath.  You also sign and say “Da-da,” and you have a special place in your heart for your daddy and your grandpa.  It is fitting that one of your first words was “Pa-pa.”  You will say “Ma-ma,” but only if you are upset and really need something from me!

Your favorite games are peek-a-boo, chasing me and your big brother, tickle-time and blowing raspberries, pulling all the books off the shelf, and, of course, laughing at silly boy-noises.  You adore your big brother, and can make a game out of just about anything with him.

And, best of all, you are healthy.  For a year now, you haven’t needed anything more than an occasional antibiotic for an ear infection.  We only see your cardiologist once a year for a check-up, and we don’t fear for your life when you get an cough or cold.  You have come so far from the baby who was only expected to live a few hours – you are such a miracle!

You truly are a blessing and  joy, and I am so grateful that God gave us YOU.  Thank you, Lord, and to You be the Glory!

We love you so much,

Mommy & Daddy

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Today is also a “new beginning” for our family, as we move into our first house!  If you are feeling nostalgic (or are just curious) what happened one year ago, the day Matthew’s heart was surgically repaired, you can check out the archives for May 2008, or follow these links to my posts from that day: