Category: Harper Lynn

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.

Don’t forget to hit your knees in prayer

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Life has been rolling right along these days.  The big girls are out of school so the house is full of hustle and bustle and giggles and the beautiful sounds of sibling rivalry.  In the midst of it all, this mom has grown little complacent in the area of prayer… Harper has just adjusted so well to life at home, and while there are some areas of delay in her development, overall she seems perfect and “normal.”  So normal, in fact, that I’ve gotten a bit slack in the area of praying for her sweet little body.

But this morning’s doctor visit thrust me right back into the reality of raising a baby with hydrocephalus concerns and other special medical needs.  I have become so comfortable with all of the doctors and therapists and appointments that I haven’t really been bathing each one in prayer as I used to.  And this morning I got the dreaded measurement result that we had forgotten was possible- Harper’s head circumference has increased a little too quickly for comfort. Granted, it isn’t a huge jump, but it is enough in her case to cause some concern, so her pediatrician said she would consult with Duke neuro to see what they felt should be done at this stage.

And with that came a phone call that sent my emotions into overdrive- we have a c/t scan scheduled first thing Friday morning at the hospital here in Wilmington.  I had a feeling they would need to do one and check things out, but for some reason it hurt my heart… Harper has been doing so, so well, and I was so optimistic that our days of scans and tests and procedures would be over.  We haven’t had any head scans since we returned to Wilmington, so hearing that sent me back to our Duke days and I had a momentary meltdown.  (Of course, it doesn’t help that my husband is in California for military training during all of this and I’ve had sick kids and no sleep… Mama’s a little spent and over-emotional these days!)

So, just a reminder for myself to keep trusting and praying and not to take things for granted… thanks for praying with us for good results on Friday!  (And here’s the song I’ve been listening to this afternoon…)

Success!

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Harper is out of surgery, and the doctor is thrilled with the progress that was made today. It appears that Harper has what is called choroid plexus cysts… They found a total of five areas today and were able to “communicate” all of them. They also were able to remove all of the cotton balls from the previous surgery. They inserted a catheter to continue draining the fluid and will be monitoring her pressure over the next couple of days. The prayer is that the fluid will drain sufficiently and she will not require a shunt… Right now they’re optimistic about pathology results and do not anticipate any long-term damage developmentally. We are now waiting to go back and see our girl, and so thankful for the answered prayers! Our Harper is a miracle for sure…

Another day down

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Today we walked in to see Harper moved onto her side! Not a big deal, but it was nice to see her in a different position. She remains stable, although today she really struggled with pain. It is so hard to just sit there and watch her hurt! Fortunately this evening they switched her pain meds and finally got her comfortable again. She came completely off of the dopamine today, so that was great news. Her labs are still looking good, and tomorrow she’ll have a c/t scan to prep for surgery Thursday morning. The doctors seem very optimistic about the surgery, so we are just holding tight and praying between now and then!