Tag: hydrocephalus

My help

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I’m not even gonna lie… The past three days have felt like at least three weeks.  Considering everything, Harper is once again doing amazingly well.  She is back to talking and playing and being silly in between her meltdowns (aka the Keppra cries).  Her appetite is up and down, her moods are swinging, and her sleep is restless at best, but we can see that personality that we so adore.

But, being sleep deprived and dealing with the screaming spells and watching her every breath and the constant worry has stress levels high around here.  So, today, we decided to escape the confines of our house and venture outside.  I’m a bit leery of public excursions still (crowds and germs and overstimulation and meltdowns, oh my!) so we drove to see Daddy.

As we were riding along, the girls were all quiet, Mommy was deep in thought, and the radio was playing softly in the background.  It was oddly peaceful for our crew, and then I heard the sweetest little voice singing, “My help comes from you…”  Apparently the song Shoulders by for King & Country was on, and Harper decided to sing along.

I can’t say for sure what Harper’s purpose is- why she has had to endure what she has or what her future holds.  But I know that God uses her daily to remind me of Who He is, to direct my eyes back to Him, to show me that He is still there.  Hearing her little voice singing out where her help comes from shifted my focus in that moment to the words in Psalm 121:

I will lift up mine eyes unto the hills, from whence cometh my help.

My help cometh from the Lord, which made heaven and earth.

He will not suffer thy foot to be moved: he that keepeth thee will not slumber.

Behold, he that keepeth Israel shall neither slumber nor sleep.

The Lord is thy keeper: the Lord is thy shade upon thy right hand.

The sun shall not smite thee by day, nor the moon by night.

The Lord shall preserve thee from all evil: he shall preserve thy soul.

The Lord shall preserve thy going out and thy coming in from this time forth, and even for evermore.

Friends, this world offers all kinds of help, and some of it is indeed beneficial.  But our ultimate source of help for any and every situation big or small is God.  He alone can meet our every need.  He alone can sustain us.  He is my keeper, He is my daughter’s keeper, and He is your keeper.  Whatever you’re facing, lift your eyes unto the hills…

Sunday’s Scripture… Even if

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Today’s Scripture is from the book of Daniel…

If we are thrown into the blazing furnace, the God we serve is able to save us from it, and He will rescue us from your hand, O king.  But even if He does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up.  -Daniel 3:17-18

This passage is spoken by Shadrach, Meshach, and Abednego in response to the king’s threats to toss them into the furnace.  They literally were facing the fire, lives on the line, and their faith remained unwaivering.  And what strikes me here is the phrase, “and even if He does not.”  They acknowledge that the God they serve is most certainly capable of rescuing them from their circumstances, but they also choose to accept that He may opt not to rescue them- and they’ll worship Him anyway.  I heard someone once refer to this as the “even-if” kind of faith… Trusting God’s plans even if it doesn’t look like what you expect or desire.

Y’all, I’m struggling with this kind of faith this week.  It’s been a hard two weeks in our family.  Two weeks ago today I wrote about my youngest having a small seizure, and that it was no big deal and to be expected.  That was easy to say when it was just one small one-minute seizure.  But Friday morning we woke up around 6:30 to find her in another seizure.  She happened to be in the bed with us, so her shaking woke us up- but we don’t know how long she had been seizing before we actually woke up.  We started timing it once we were aware of what was happening, and it lasted about four minutes and then stopped on its own so we did not have to administer her emergency medication… But it was scary.  We’ve now witnessed a few of these episodes with Harper, but they don’t get easier… It is a gut-wrenching, heart-breaking feeling to watch your spunky, full-of-life child be so vulnerable and helpless.

With these seizures we have also been seeing some other changes in Harper.  Her mood swings are intense- We have the typical terrible two’s, but it’s amplified by her lack of sleep, an incredible physical strength, and these new screaming spells that come on for no apparent reason and can last for a really long time (and no, they are not like toddler tantrums).  She’s been eating very little, naps about once a week, and is up and down through the night once she finally falls asleep.  Now that she has started having these seizures, she has been moved from the toddler bed in our room into our bed so that we can feel her when she starts seizing… Not an ideal sleeping situation, but it’s the best way we know how to get any rest at this point in the game.  We have a message in to her neurologist at Duke to update him on what we are seeing, and her next MRI is currently scheduled for September.

I have hesitated to tell people that we are dealing with this.  I’ve been so full of hope and we’ve seen such great strides forward for so long that it’s hard to admit things aren’t perfect.  I’m so grateful to God for bringing us this far that it feels wrong to say there’s a problem now.  I feel guilty for any kind of complaining about things being hard because they could be so much worse.  And I feel guilty for being afraid because my faith should be greater than that.  Plus, speaking it makes it more real, and I don’t want this to be a real thing for my daughter or our family.

But I am drained.  I am weary.  I am exhausted.  And it isn’t just physically.  This new way of living is mentally and emotionally wearing, and the worry is weighing heavy on this mommy’s heart.  I know all of the verses about not worrying, I know where my hope lies, I know Who ultimately is in control, I know my help and my strength comes from the Lord… My head knows the Bible answers, but my heart is struggling with the “even-if” faith.

We’ve seen miracles happen.  We’ve been granted an incredible blessing in Harper.  I don’t for a minute discredit all the that Lord has done for us… We are miles away from where we were two years ago.  And I know He has a plan.  But in these moments, I’m a little bit scared of what His plan may entail.  I know He can totally heal our girl- but I also know that His plans are not our plans and I have to be willing to trust Him and praise Him “even if He does not.”  Because regardless of what happens, He is still God and He is still good… even if.

he is still good

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!

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.

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!