It’s about time…

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Some things take time… A tree growing, cooking a roast, traveling around the world, and Harper graduating from the developmental clinic.  But today, two years later, she finally did!

We’ve had two appointments in the past week- Harper’s two year well-check and the developmental testing today.  She is right on track with her growth, staying steadily in the middle “normal” range, and for the first time since birth her head circumference is actually on the chart.  It’s still in the top percentile, but it’s on the graph!

Developmentally speaking Harper is exactly where she should be.  She excelled on her tests today, scoring at her age and higher in all areas.  They were wowed by her speech development, and impressed with her attention and determination to the tasks presented to her.  I was one proud mama!

The highlight of the visit today was talking with Dr. D, the doctor who assessed Harper the day she was born.  He told me he remembers seeing her and thinking how perfect she looked, and being shocked at the scans of her brain that indicated a totally different story.  He said he makes sure he shows the team her images and her records so that they realize what an incredible story she has.  “Absolutely amazing” was repeated over and over again… And while I know and agree that God’s work in Harper is absolutely amazing, these appointments are such a great reminder to me to embrace the miracle we’ve been given and to thank God for what He has done and is continuing to do in our family.  There really will never be enough time to fully express all the gratitude I have for the gift we’ve been given.

But thanks be to God! He gives us the victory through our Lord Jesus Christ.        –I Corinthians 15:57



Faith of a child

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Today we learned of the passing of an amazing woman of God… She has been an example to me of what a wife and mother should look like, and she has been a constant source of encouragement in my life.  She has been there since I first gave my life to the Lord as a teenager, attended my wedding, and watched over my babies in the nursery and taught them in Sunday school.  My heart has ached all day, and I worried about how my own daughters would handle the news.

But my girls never cease to amaze me.  I sat them down after I stopped weeping, braced myself and broke the news to them as gently as I could manage.  And their responses stunned me.  They smiled!  “She’s with Jesus now!”  My heart swelled as I realized that they get it.  This world is not our home, and we should all be eagerly anticipating the day we get to meet Jesus face to face.  No more pain, no more tears, no more sorrow… just sitting at the feet of Jesus, dancing in His presence, singing His praises, knowing that the best has finally come.

While my heart still hurts for my own selfish reasons, I am striving to have the sweet faith of my children- recognizing what a day of rejoicing this is in Heaven.  I pray that as we all continue our time here on earth, we seek to remember that this life is all about Him.  Everything we do, everything we say, every situation we face… it should all be for His glory.  The only thing that matters is Jesus.

She is joy 

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Harper is the picture of what joy should look like.  An entire day of being poked and prodded and drug from one appointment to another, and she literally bounced down the hospital halls, greeting everyone she saw with smiles and her sing-song voice.  She sat patiently as they put probes all over her head, laid quietly as they ran the EEG, and allowed them to remove it all and clean her head without a whimper. The results of her testing were good.  Basically her medication is doing the job and her EEG did not show any seizure activity.  There was a discrepancy in her test between the sides of her brain, indicating that one side is not as strong.  This is due to the areas of cysts and dead brain tissue that she has, and could be the cause of the seizures… But once again, we can’t say what that will mean for the future.  It could become more of an issue down the road in terms of her learning and development, which we’ve always been warned of, but only time will tell as she grows and develops.  For now she seems to be doing just fine! We did discuss the side effects of her medication with the neurologist.  Harper has mood swings, a loss of appetite, and she does not sleep well at all.  She’s very restless and has a difficult time staying asleep, and moves constantly when sleeping.  We are trying a prescription vitamin for a month to see if that helps, and if not we’ll reevaluate with the doctors. Now we do six months of this routine, and then back to Duke for another EEG and consult with the neurologist- which will also be around the same time as our next MRI and neurosurgeon appointment.  Next week is a follow up with our pediatrician, then developmental testing at the hospital clinic here in town the following week… And then, hopefully, an uneventful spring! As I start to feel weary of this journey, fearful of the unknowns, and, well, just plain whiny, I think of my girl… Of her fight for life, her encouragement to others, her courage and strength in these scary situations, and her bubbly, giggly joy that overflows… And I know that God has blessed me with a constant reminder of His goodness in all circumstances.

Two

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My baby girl is two. TWO! That means our baby years are behind us and we are fully into toddlerhood. That right there is enough to bring on the waterworks, especially knowing that this is our last “baby”!

But this day brings with it great emotions for even more reasons. While we celebrate two  amazing years with our miracle baby, the memories of that day and the days that followed are not all grand. It was a day of fear and uncertainty, a day of tears and heartbreak as we faced an unknown future. It was a time of accepting that all of our “plans” had been made in vain, and that life is far more precious than we realized. It was learning firsthand that God is still good even when things seem terribly wrong. It was relinquishing control and embracing His plans in place of my own desires.IMG_7672

As a mommy, it is hard to admit that this day two years ago was not one of the best days of my life, and that even though we have been blessed and have come so far, I struggle with my thoughts and emotions on this day. As I remember the loneliness of being separated from the baby I carried for nine months and the fight she faced in the weeks that followed, I hurt. It’s a pain that few can understand. But there is healing that comes with truth, and once I admit the struggle, I am free to count the blessings once again.

And this has been another year of blessings. Dancing (oh, the dancing!) and laughter and words and love… Excitement over milestones reached, joy in accepting each day as a gift. We have a girl who loves life, who makes us smile every hour, who is a constant reminder to embrace this moment. She’s happy and mischievous and bouncy and wild.  She keeps us on our toes and shows us Who is in control. She is His, and has proven that He creates us each uniquely for a purpose.

So as we celebrate this miraculous gift of life today, I am choosing to focus not on all the painful memories of that day, but instead on one amazing moment… The moment I heard her very first cry. It was the moment I saw that she was already proving doctors wrong, the first moment she showed us her strength and fire. It was loud and clear, a warrior cry, and it was then I realized that she was a fighter with a purpose. For me, that first cry was a promise from the giver of life… And that’s what I choose to remember today!

“From life’s first cry to final breath, Jesus commands my destiny.
No power of hell, no scheme of man, can ever pluck me from His hand…”
(-In Christ Alone)

Update

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IMG_7467     It has now been almost two weeks since Harper’s seizure and our trip to the hospital.  I would love to say that things have just hopped right back to normal, but of course they haven’t.  I guess we are just adapting to a new normal at this stage.  She is adjusting to the anti-seizure medications, but it’s a slow process.  The side effects have been a bit tough on her, making her tired and spacey, decreasing her energy, and affecting her moods and sleep patterns.  She doesn’t talk as much, doesn’t run around and dance and play as much, and has struggled with getting “good” sleep.  However, the doctor says that is all to be expected and that hopefully it will get better as time goes on.

The good news is that we haven’t seen any more major seizures.  In two weeks, she’s only had two “episodes” that seemed to be small seizures… Both were only about a minute long and happened really fast, so that was a huge relief!  The pediatrician checked her out and said she looks “amazing” considering what she went through, and we haven’t seen any regression in developmental skills.  While she is doing great and we haven’t seen anything close to what we saw on that night two weeks ago, I am still nervous about letting her out of my sight, and we’ve moved a toddler bed into our room for her so that we can hear her if anything happens overnight again.  We have monitors and video now for her room, but I worry that I just wouldn’t hear her on those if I was asleep.  So, right beside me she stays!

Unfortunately, despite my efforts to quarantine her as much as possible, she has still managed to stay sick.  She has had cold, cough, and fever pretty much since the seizure, but no infections, so hopefully her immune system will kick into high gear soon and beat this stuff!  This means we are watching her even more closely as this lowers her threshold for seizure activity.

For now we just keep trucking on.  We are gradually getting more accustomed to our “new normals,” and we have lots of appointments in the next month that will hopefully have us more and more back on track.  In March Harper will go back to Duke for an EEG and a consult with her neurologist, and we also will go to the NICU clinic here in Wilmington for developmental testing (hopefully our last round there!).  This whole experience has been a difficult reality check as we have been reminded that there are so many uncertainties with Harper.  If we focus on all that can happen and go wrong, it can drown us.  We have to choose instead to focus on all the miracles God has worked in her, and trust that He isn’t finished yet.  He has big plans for her, and He has promised to walk this journey with us.  As the saying goes, we may not know all the why’s, but we know Who, and that’s all we need!

Even there

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Some days it’s easy to focus on the gifts, easy to count the blessings, easy to sing His praises. Other days it’s a little harder, but we still find a way to praise Him through the storm.

And then there are days when you’re just plain weary, when you’re exhausted from searching for the gifts, when you just need to cry and ask God, “Why?” I’ve been there, and I’ve been consumed with the guilt of feeling that way- the guilt that comes from looking at the circumstances, with taking your eyes off of Jesus, with having the nerve to question Him.

Yet in that darkness when the guilt and the loneliness and the fear and the sadness seep in, threatening to engulf the soul, there is hope. There is grace. There is love. There is God. When we feel like we’ve reached the bottom and we can’t find Him, He reaches down and takes us by the hand. And while we may not find ourselves immediately back on the top of the mountain, He promises to stay with us. Even if the valley goes on for miles, even if the night continues for hours, even if it’s hard and scary… Even there He is there.

He shows up in the text from a friend… In the Scripture that keeps coming to mind… In the meal from a family member… In the hug from your kids… In the cards or notes or prayers from church family… In the song on the radio…. In the sudden peace that fills your soul. He’s everywhere, showering you with love and grace and mercy and strength that is made perfect in weakness.

Good times or bad, at our best or at our worst… Even there He is there.

You have searched me, Lord,
and you know me.
You know when I sit and when I rise;
you perceive my thoughts from afar.
You discern my going out and my lying down;
you are familiar with all my ways.
Before a word is on my tongue
you, Lord, know it completely.
You hem me in behind and before,
and you lay your hand upon me.
Such knowledge is too wonderful for me,
too lofty for me to attain.
Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
Even there your hand will guide me,
your right hand will hold me fast.
If I say, “Surely the darkness will hide me
and the light become night around me,”
Even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
-Psalm 139:1-12

The interrupted calm…

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We interrupt this calm to bring you the storm… That’s the story of our week.  Life has been “normal.”  Raegan has been in school, doing great, and I’ve been home with the two little girls.  Maddie has been breezing through homeschool, and Harper has been a typical toddler, growing and exploring and testing her limits.  We had broken away from that life of doctors and therapy and medications and fallen into a comfortable, happy place. And Tuesday night that was all brought to a screeching halt.  We had a great day, a calm evening, and got all the girls settled into bed with no trouble.  In fact, I was celebrating because Harper had gone down so easily- she had gotten to be a bit of a handful at bedtime in the past week and wasn’t sleeping as well, so I was excited that she was so easily settled.  Then, as I was relaxing and getting ready for bed, I heard a sound through the baby monitor that made me pause.  I thought Harper was playing with something as I heard this rhythmic tapping sound, and I hesitated to go into her room- I was worried that if she was awake and saw me she would start crying and not go to sleep (hopefully other moms can understand my dilemma!).  But I knew I couldn’t relax until I saw that she was definitely okay, so I opened her door.

Long story short, she was not okay.  She had vomited in her crib and was face down in it, seizing.  Initially we thought she was choking, but her seizure was interfering with her breathing.  I called 9-1-1, and somehow the operator was able to make some sense of my hysterics, and the paramedics arrived within ten minutes.  The gentleman ran in, immediately snatched Harper up, and ran her out to the ambulance.

By the time we reached the hospital they had managed to stop the seizure, but she had suffered through it for about 40 minutes and was struggling to breathe on her own. Once she was stabilized in the trauma room, they transported her to a c/t scan, and then we were put in a holding room in the ER as we waited for an actual room to open up in the children’s hospital.  However, the doctors decided to consult with her medical team at Duke, and it was decided that she should be airlifted to them.  When the flight team arrived to transport her to the helicopter, she was awake, and was not at all excited to be strapped to a stretcher and taken away from her mommy and daddy.  (And we were not happy to let her go, either!)  They did allow us to walk out to the pad with her, and to tell her goodbye in the helicopter before they took off.  As soon as she was secure, we hit the road for Duke.

Harper arrived at Duke around 3:15 a.m., and we arrived just after 5:00 a.m.  The neurosurgeons looked at her c/t scan and gave us the all clear from their standpoint- her cysts have not grown any, no further fluid accumulation, and everything looks stable still.  After several hours we were admitted to a room on the pediatric floor, and there we met with a pediatric team and a neurology team.  The final verdict was that there really was nothing to do- this was a result of what we already knew.  Harper’s brain is abnormal and she still has porencephalic cysts, and she is a high risk for seizures.  We have been blessed to have a nice, calm, “normal” past year with her, but this was a wake-up call to the reality of her condition…. that there are lots of unknowns and no one can predict what she will do.

The official primary diagnosis we received for Harper is “status epilepticus.”  That’s just a way of saying life-threatening seizures that last longer than 30 minutes and can be difficult to stop.  She has earned long-term anti-seizure medication now, which we are working on.  It makes her irritable and sleepy, and she takes it twice a day, so our girl is not quite the same as she was before.  However, we are hoping that once her body adapts to being back on medication she will return to her happy, cheerful self.    We were also told that simple things like the common cold and viruses increase the likelihood of having these seizures, so we are learning to be more cautious about germ exposure! It is a lot to take in… We have emergency meds to carry with us at all times in the event of a seizure, and we are on pins and needles now, just waiting to see if it happens again.  For now, she doesn’t leave Mommy’s sight!  We have a lot to learn about prevention and awareness and how to respond, as well as options for monitoring her, particularly during the night hours.  Of course, we are all praying that we don’t have to experience this again, that the meds will keep things under control and that we can eventually relax a little and feel confident that she isn’t in danger.  It’s a scary road to walk as a parent… This is my daughter, the one we have prayed for and fought for, and the image of how I found her the other night haunts me.  I have been shaken to the core, but I am constantly reminded that God always keeps His promises, and ultimately she is His.  He has not brought us this far to leave us!

“No one will be able to stand against you all the days of your life.  As I was with Moses, so I will be with you; I will never leave you nor forsake you.”
-Joshua 1:5

Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”

Surely he will save you from the fowler’s snare and from the deadly pestilence. He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday. A thousand may fall at your side, ten thousand at your right hand, but it will not come near you. You will only observe with your eyes     and see the punishment of the wicked.

If you say, “The Lord is my refuge,”  and you make the Most High your dwelling, no harm will overtake you, no disaster will come near your tent. For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone. You will tread on the lion and the cobra; you will trample the great lion and the serpent.

“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name. He will call on me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life I will satisfy him and show him my salvation.”
-Psalm 91

Waking up in the ER

Waking up in the ER

Getting ready for her second flight to Duke

Getting ready for her second flight to Duke

Cruising the halls at Duke

Cruising the halls at Duke

Developmental Testing Results

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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

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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!

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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.