Saturday, June 4, 2011

Selah's Surprises and Surgeries

On June 1, Baby Selah turned 8 months old.  She is THRIVING.  Hallelujah!

But Selah will be facing some surgery in the upcoming months, and I'd love to know if any of you have ever dealt with any of this.  I would love to connect with other moms who have experience in any of the things we're facing, as this is unknown territory for us.

Selah must have reconstructive skull surgery.  Her skull is badly misshapen due to her severe hydrocephalus at birth.  (She was born with 3 pounds of fluid in her skull, and only a small sliver of brain.)  We have not seen photos of Selah at birth, but her neurosurgeon told us it was the biggest skull he had ever seen.  We were also told that no one expected Selah to be born alive, and then when she was, they didn't expect her to survive very long.  

Then God sent her to our family, but, of course, we didn't know any of that history, other than the fact that she had hydrocephalus.  Oh my.  Selah has been such an unexpected blessing to our entire family.  Oh how dearly we love this little girl.  Right now, she has been with us the same amount of time that Chrissie was with us, and right now we are facing some serious surgeries.

Sometimes it feels like this can't be true.  How can God allow us to fall so deeply in love with one of His precious children, only to lead us down a path of such high risk?!?  But we trust God and His sovereignty more than the fear of risks and emotions.  We're bossing our  hearts through this experience, falling deeper and deeper in love, opening our hearts fully to another vulnerable state, because that is what life is all about.  That is what God has called us to do, and no matter how much we'd like to protect ourselves, living our lives with our hearts in a casket of safety is not the abundant life He has called us to.

Oh how we don't want to lose this precious baby girl.  The risk is high, but so is the reward.

Just look at this precious face!  Those eyes.  They get me E-V-E-R-Y time.  And that upper lip.  The arches are shaped just like a heart!  And oh, what symbolism there is in a heart.  When I think of hearts, I immediately think of love, kisses, and hugs.  I also think of Valentine's Day.  And chocolate.  And of course chocolate makes me think of our Chrissie.  And hearts make me think of our princess, too.   Chrissie's precious broken heart is now perfectly healed, and she left us a legacy of bossing our hearts.

And when we boss our hearts, we are able to walk in God's Truth, in His love, trusting in His sovereignty, regardless of the risks.

Even the risk of a highly invasive, high-risk brain/skull reconstructive surgery.

On Thursday, June 2, Matt and I met with the craniofacial reconstructive surgeon, along with the neurosurgeon, for a consultation about Selah's skull shape and surgery.  Both surgeons agree that Selah needs to have this surgery, in two phases.  They believe that because Selah is doing so well developmentally, we need to give her brain the optimal chance at continuing to progress and grow.  In order for the brain to have the optimal chance, it must have the optimal skull shape, which is NOT Selah's current shape.

Selah needs to have a rounder skull, instead of the oblong and horribly misshapen skull she currently has.  Selah also has several places where her skull has fused, known as craniosynostosis.  In order for Selah's brain to continue to grow and thrive the way that it miraculously has thus far, her skull must undergo reconstructive surgery to form it into a more properly shaped skull.

On one note, this is a really positive thing because this means that Selah's brain is progressing in ways the specialists thought impossible.  Since the specialists have witnessed Selah's miraculous developmental progress, they believe it is worth the risk to perform this surgery so that Selah will be able to continue to progress in the miraculous fashion that she has displayed over the past 8 months.  (The surgeons told us that if she wasn't really progressing, the surgery would be a mute point because it wouldn't really matter what shape her skull is if her brain isn't progressing anyway.)

On another note, the surgery is high risk and highly invasive, which is so scary for us.  It's hard to imagine that God has asked us to walk this path, again, just with a different child and a different type of high-risk surgery to a different body part.  I can feel my heart beating more rapidly as I type this, palms sweating.

Boss my heart.  Deep breath.

Boss my heart.  Help me Lord.

Boss my heart.  God's Truth.  Reminders that His mercy prevails, His love never fails.

We must choose trust over doubt.  We must choose God's sovereignty over circumstances.  We must choose His will over our own desires.  We must choose obedience over running a different direction with our fingers in our ears disobedience.

And not only will Selah have reconstructive skull surgery, but she might also need surgery for her recently diagnosed cause of her ongoing chronic constipation: anteriorly placed rectal opening.  Basically, Selah's anus is placed too close to her "girl parts", not in line with her colon (kind of like a kink in the plumbing!), which causes chronic constipation.

Selah was also recently diagnosed with severe acid reflux, which might also cause pain when Selah tries to poop because while one end is clogged, the other end has acid that burns when she pushes and tries to poop (poor baby girl!).  The pediatric gastroenterologist put Selah on Nexium (a 10mg packet of delayed release oral suspension daily), plus she takes Miralax (1.5 tsp dissolved in juice daily), along with a serving of prunes daily to help battle her chronic constipation.  The gastro doc also requested we thicken Selah's bottles using oatmeal cereal, to help reduce reflux.  Selah also takes Keppra (1 ml every 8 hours) , an anti-seizure medication.

In addition to Selah's oral medications, she receives weekly physical therapy and occupational therapy.  Despite all of her "issues", she is still reaching developmental milestones that no one expected her to achieve and she is absolutely THRIVING.  All glory to God, for He has done great things!

At age 4 months, Selah got 2 bottom teeth.  At age 5 months, she was rolling over in both directions.  At age 6 months, Selah was sitting (tripod method, propping herself up with her hands between her legs) by herself, she got 2 top teeth, and she learned to give kisses.  At Selah's 6 month well check, she was 110th percentile in height and 99th percentile in weight.  At age 7 months, Selah began pulling her legs up underneath her when lying flat, standing for extended periods, jumping up and down, clapping, and waving hi, plus she got 2 more top teeth.  Selah just turned 8 months old, and she weighs 22.5 pounds!
Just look at this healthy baby girl! :-)

We believe the first phase of Selah's skull reconstructive surgery will occur in August, but we are waiting for the surgery scheduler to contact us to confirm.  (We want to wait until August so the kids can have a fun summer.  We have a family camp in Colorado (for adoptive families) at the beginning of August, so we're hoping we can schedule Selah's surgery after we get back from family camp.)  

If anyone has any advice on what we can do to help Selah with her constipation and reflux, that would be great.  And if anyone has experience with skull reconstructive surgery and/or surgery for an anteriorly placed anus, we'd love to hear from you.

And, of course, we would be most grateful for everyone's prayers for sweet Selah to continue to thrive.  Glory to God and praises to our Mighty Father!  He never ceases to surprise, shock, AMAZE me. :-)

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