Developmental Testing Results

Slow and steady wins the race- that's the latest verdict on Harper's developmental progress.  This morning she took on the NICU developmental clinic here in Wilmington, and she handled it like a champ.  She met with a nurse, a therapist, a psychologist, and Dr. D, the very first doctor to work with Harper when she was born.

Harper was tested in the areas of cognitive, language, fine motor, and gross motor development, as well as measured and weighed to ensure her physical growth is on target (which, as we all know by looking at her, is perfectly fine!).  

Harper showed advanced skills in her cognitive and language development, and for the first time ever was right on target with her fine motor development!  (She has an incredible OT whom we love!). Gross motor skills proved to be the area of greatest concern this go round.  She walks and gets around just fine, but can be a little unsteady on her feet and trips and falls a lot.  She also needs some work on things like running and jumping and climbing and stepping up and down... Things that will come with time and practice, and that Mommy isn't in a hurry to push.  The less climbing she does at this stage, the less I worry about head injuries!

We now have to follow up with our case manager and therapists to determine what services we can wean from based on today's report.  We also will follow up for further testing again in six months. 

I catch myself feeling discouraged at times when I leave those appointments and she doesn't "ace" all the tests.  Sometimes I think I just want to hear that she's totally in the clear and we can put all this behind us... But that's not the journey God has us on.  And as Dr. D reminded me today, she is amazing.  Given her past and what was predicted for her, we are seeing miracles every day.  Yes, I'd like to move on with no further testing or scans or therapies or special doctors, but what a gift we've been given!  She has come so much farther than anyone ever dreamed, and she's continuing to show us each day the mighty power of a God who heals and restores.  Let's pray that we all can learn to accept that the One who is in control has a perfectly designed plan, and that His plans and His timing are all for our good!

Duke Update

Our girl is a trooper.  We hit the road to Duke late last night, totally disrupting Harper's routine.  Then we made her go all morning with no food or drink, only to have her MRI delayed once we arrived at the hospital.  But she only asked for food ("goldfish") a few times, and never really cried or got overly upset.

We finally went into the prep room around 11:00, and there we found that God had answered our first prayer- they were using a new sedation medication that did not require needles or IVs!  It was administered in a nose spray, and within thirty minutes she was out.  

After a good bit of time in recovery (Harper didn't really want to wake up), we met with Dr. Fuchs, Harper's neurosurgeon.  He showed us the scans, and things are looking good.

First, Harper's brain tissue has grown and expanded, and the fluid surrounding the outside of her brain has decreased.  (That's a GREAT thing!).  The biggest things we look at, however, are her ventricles and her cysts.  

When Harper was born, the cysts on her brain had blocked her two ventricles and caused fluid to back up into those ventricles.  As the fluid backed up, the ventricles expanded and filled, and compressed her brain tissue on both sides.  This resulted in a significant loss of brain matter, and what was there was all jumbled up with no true halves.  Then, in her first surgery, she experienced severe hemorrhaging in her brain.  

Today, her scan showed a fairly defined midline, and her right ventricle has decreased in size- that means her brain is filling in that space and the fluid is draining on its own on that side.  It's still larger than a "normal" ventricle, but smaller than it was a year ago, praise God!

The left side of her brain remains stable.  The cysts have not gone away, but they haven't grown.  The ventricle is still large and fluid-filled, but has not increased in size.  And there is still a gap in her skull where they had to remove part of it, but that will take a good bit of time to grow and fuse together.  

The best news of the day was that we don't have to return for a year as long as she doesn't show any signs pressure building.  We love Duke, but we are good with taking a break for a year!

Now we head home, rejoice in these victories, and keep praying for more as we prepare for her developmental testing next week. It can be difficult to see an image of my baby's brain and know she's walking around with cysts and fluid, and that things could change in the blink of an eye.  It's a surreal experience to feel so familiar with children's hospitals and scans and therapies-  to know that this is our life, even though it isn't what we ever envisioned or planned.  And it's difficult to accept the good news of today while knowing that we aren't totally in the clear with Harper.   But God has shown us in the last nineteen months that His plans are bigger and better than we can comprehend.  We embrace the miracle of today, live this moment to the fullest, and remember that every minute is a gift from Him. 

Happy hydrocephalus awareness month!

In the past year (or two) I've learned a lot of new information, information that I never really knew that I'd ever know or need to know.  Funny how life works that way.  But one of the things I learned was that September is National Hydrocephalus Awareness month, so as I've grown in my knowledge of hydrocephalus with my Harper, I've given it a lot of consideration this month.

You see, I never knew anything about hydrocephalus before because it didn't mean anything to me.  It didn't impact my life or the lives of those in my life, so I really didn't even know what it meant.  I remember being in the hospital at 37 weeks pregnant and the doctor telling us with tears in her eyes that our baby had fluid on her brain, and someone saying the word "hydrocephalus"... and I remember feeling dumb because I had no idea what that was or what that meant.  However, the word quickly became a part of our vocabulary as we prepared to give birth to a little girl who would teach us so much about that word and about miracles and about faith and about strength... but even as we watched her being airlifted away from us, as we waited through one brain surgery after another and another, as we spent weeks upon weeks on the roller coaster ride of having an infant in intensive care, we still didn't know the full impact of that original diagnosis.  We didn't realize that one issue could erupt into a barrage of other medical emergencies, that one condition would result in a long list of conditions.  We also didn't realize that a diagnosis of hydrocephalus carried a lifetime sentence.

Unfortunately, we had a lot to learn, and we are still learning.  There is no cure for hydrocephalus.  It is something our family will live with all of Harper's life.  Harper is one of the lucky ones (although we know luck has nothing to do with it- it's all God!)... She does not yet have a permanent shunt, and her development is progressing beautifully.  Her therapies have been decreased and she's happy and active.  Every day with her is a blessing.  But, every so often, we are reminded that we are never really in the clear.  Every time she bumps her head, those fears rush in.  When she doesn't eat as well, seems to fall more than usual, is unusually irritable, doesn't sleep well, sleeps too much, acts strange in any way... alarms go off in our minds and we start watching her every move, looking for signs of increased pressure on her brain, looking for signals that we need to hit the road for a trip to Duke.  Things that could easily be teething or normal childhood sickness cause us to worry and pace and pray, because they could also be signs of more serious issues in a child with Harper's intense medical history.

It can be a scary way to live as a parent- always watching, knowing that brain issues are so tricky and you really just have to wait and see what the future holds.  Embracing every victory and praising God for the blessings, and praying constantly that the good will continue, that you won't have to visit those dark and scary places that the doctors warn you could come.  Some days it can feel overwhelming... but God is good, His plans are for our good, and we find peace in knowing that we don't have to know all the details or understand the why's.  This day we have, this moment we're in, these blessings all around us right now- it's all a gift.  If nothing else, that's what I've learned through this journey... to embrace this moment, to live it for Him, and to trust Him to handle the details of what may (or may not) come.  My life is His, and Harper's life is His, and that's all I need to know.

Schooling changes (again)

Well, this year marks the beginning of a new school adventure for our family- again.  Last year we tackled our first year of homeschool with a fourth grader, one in Pre-K, and a baby.  My plans were to continue all of that right on through this year, and we were going to add Classical Conversations to our regimen.  My plans were to get the girls involved with that group, to branch out to more groups and social events, and to embrace kindergarten and fifth grade with gusto.  My plans sounded great to me, they looked great on paper, and I was excited about how I worked it all out.

But, they were my plans- not God's.  Much to my surprise, the end of the summer led us down a different path, to a different plan that God had in store.  I wasn't thrilled about it, and I fought it hard, but His plans for this school year kept my bluebird home with me for kindergarten, and sent my oldest to charter school for fifth grade.  For the first time, she is in a full-sized classroom, not in a Christian environment, away from her mom, changing classes, and gaining independence.

I may not like it, but God doesn't make His plans according to what we like.  Sometimes He asks us to step outside of our comfort zones.  Sometimes He stretches us.  Sometimes He asks us to release control, to place our children and our plans and our desires into His hands.  Sometimes it hurts and it's scary... but it's always best to go where He leads.

New normals

Emotions have run rampant this week... I had a few moments to reflect this week on where we are and where we were, and it's been a lot to process.  Exactly two years ago I was in scary place, fighting for my marriage, facing unknowns and circumstances I didn't know how to deal with.  Exactly one year ago, I was in the midst of a different battle, this time fighting for my daughter's life- again, facing unknowns and circumstances I didn't know how to deal with.

And now, here I am, living a completely different life, learning to accept new normals and learning to live with unknowns.  Yesterday I was faced with that reality as we took Harper to Duke for her check-up with the neurosurgeon.  It was a basic appointment with no tests or scans this time, just a physical exam of her head, check of her neurological signs, and questions for us regarding her development.  All in all it went well, but it was a stark reminder that our lives will never again be the same. 

As the doctor examined my baby girl's scars, it hit me that she will forever have those as a reminder of her fight for life.  While I rarely notice them anymore, other people do, and one day she'll notice them and we'll share with her the miraculous story of how she beat the odds.  As he quizzed me on her developmental delays, I realized that while I just see progress, outsiders may look at my seemingly perfect, beautiful baby and wonder why she doesn't do certain things, particularly as she grows older.  As he reminded me that he expects her to be delayed, I felt anger well up in me, because I expect complete healing.  And as he spoke of all of the unknowns, all of the wait and sees, I had to accept that it is all completely out of my control.

Now we are back home, back to the days of balancing homeschool and three girls with very different needs and personalities... back to juggling the activities of the older girls with Harper's therapy appointments... back to updating people on how Harper is doing and sharing her story... back to the pile of medical bills and phone calls with caseworkers and signing papers and care plans... back to this new normal that has somehow become our life.

It can be overwhelming.  It can be exhausting.  It can be frustrating and emotional.  But, at the very moment that I feel like throwing in the towel, when I feel like complaining and telling God that I didn't sign up for this, He comforts me and reminds me that He designed me for this.  His plans are greater than any I could imagine, and His plans are for my good, and for Harper's good.  And He has chosen to bless me far beyond anything that I could ever deserve.  So as I get back to the new normal and all that it entails, I also get back to a life of thanksgiving... back to seeing Him in every milestone Harper makes... back to cherishing every little moment that I have with her... back to accepting His plan with a grateful heart.

Pause...

At the end of a crazy day, my emotions are all over the place as we face more uncertainty in various areas of life.  I could write on and on about all that we are praying over and thinking through, but I'm tired and it's time to just pause.... to pause and look back on this day and all the many blessings that God poured out in the chaos of the day...

More vocabulary from Harper... her emphatic "NO" in response to my requests and questions, calling for "Rae Rae," and chanting, "Mammy" for Grammy

Red roses and a box of trail mix from my husband on his way home from work... and the response he gave my firstborn when she wanted to know why- "Because I love her."

An empty laundry basket (for a few minutes, at least)

A call with words of encouragement from a friend- and reminders of lessons from God

Hugs from friends in the hall (sometimes you just need a hug)

Prayers and support and encouragement from so many expressed through social media

Seeing my daughter love and be loved by so many and knowing that she isn't just special to me

Snuggling with my two littles in the recliner, my lap overflowing

Sweet whispers and giggles of my older girls telling stories in the dark at bedtime

Anyone else out there feeling overwhelmed?  Pause.  Look for God in the small things... He's there, covering you in love and grace every step of the way.

The paradox of a miracle...

When granted a great miracle, it can be so easy to gloss over all of the "stuff" that comes along with it... the aftermath, the emotions (both good and bad), the guilt, the work, the weariness, the unknown.  These are things no one talks about when a miracle takes place, when prayers are answered, when we're standing on the mountaintop.

But, those things are there.  Believe me, they're there.  Our family has been graced with the incredible gift of our Harper Lynn, the baby girl that was not expected to survive, much less thrive.  We've gone through the pits of despair all the way up to the glorious mountaintop as God has enabled her to defeat the odds and become a living, breathing picture of His grace and power.  As her mom, I've held her close and watched her blossom into this joy-filled, determined little person.  I've heard the doctors and nurses tell me that she is amazing, that she is indeed a miracle.

Before I go any further, let me say that NOTHING diminishes that.  Nothing that happens with her will ever be able to undermine the awesome power of our God and the miracles that He has shown us.  Even if Harper were to never progress any further, His power and sovereignty would remain, and she would be a testimony of that.  I do not doubt that for a minute, and I am constantly aware of how amazingly blessed I am to be her mom.

I have been in awe of how far Harper has come.  She is so very smart, social, happy, and has an intense excitement for life.  I cannot help but be encouraged and feel God's presence when I'm with her.  Yet for all of her progress, today the doctors had to sit me down and explain to me that we still aren't quite there.  Harper had her yearly developmental check at the NICU clinic here in Wilmington.  It's a great opportunity for us to meet with specialists and therapists and get our questions answered, and they spend time with Harper testing her on various areas of her development to see how she is progressing.

The visit itself tends to be emotionally draining on me as I sit down with the doctors who were there from the beginning and rehash Harper's story.  We have to go back over the experience, her issues, the diagnosis... and while it is painful, there is great joy in holding her in  my arms as the doctors and specialists refer to her as an amazing miracle.  Today, Dr. D. told me that while he doesn't often remember a lot about all of the babies that come in, he always remembers Harper.  He was there the day she was born, and he reminded me of how perfect she looked at birth despite all of the issues in her brain.  Then he proceeded to tell me that reading her chart beyond that day is like reading a horror story, and he can't believe she is the same baby... and all I can do in response is to say, "God is good and we are blessed."

Harper's testing seemed to go well today.  Her growth is right on track, and she wowed them all with her infamous stink-face grin and mimicking everything they said.  She was happy and cooperative, and I was told that cognitively-speaking she is very advanced.  She thinks and understands and responds well beyond her age, and the testing actually took longer than usual because she was progressing several months ahead.  However, there was a big gap between that and her motor skill development.  Both her fine and gross motor skills measured well below what they should be.  This was a blow to Mommy because we were actually hoping to be discharged from all services after today.  The goal was for this to be the last appointment and for Harper to no longer require any therapies.  But, based on today's testing and the opinion of three different specialists, we will continue with occupational therapy on a weekly basis, add weekly physical therapy back to our routine (after having previously been discharged), and follow up with the clinic in another six months again.

While this is in no way "bad" news, I found myself discouraged a bit after sailing so high for so long.  In my mind, we should be finished with this stuff.  It's behind us, Harper is great, and I'm ready to move on to "normalcy" (whatever that may be).  I became selfish in wanting no more therapy or doctors, in wanting Harper to be considered "perfect" and "normal, " in wanting things to go my way instead of God's way.  And, if I'm being completely honest, with all of this comes a lot of fear.  There's so much fear in loving and raising a child who has suffered neurological damage- there is so much to worry about, so much unknown ahead, so much that is unpredictable, so much that can go wrong so very quickly, and it can be terrifying.  But in all of my wants and desires and fears, I forgot to recognize whose child she really is.  I lost sight of whose life I'm really living.  It isn't about me.  It isn't about what I want or don't want or know or don't know.  It isn't even about Harper.  It's about God, and I need to align my will with His.  His plans are right on time and for our good no matter what they are, and it took today to remind me that He has already blessed us far beyond what we could ever deserve.  It's time to embrace Him in the here and now, and live a life of praise and thanksgiving for who He is. 

"Fear the Lord your God and serve Him.  Hold fast to Him and take your oaths in His name.  He is your praise; He is your God, who performed for you those great and awesome wonders you saw with your own eyes."

-Deuteronomy 10:20-21