Tag: harper

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.

One year later…

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God had great plans through the whole experience, and He carried us on an unbelievable journey in the months that followed.  It was a painful, faith-testing, heart-wrenching, not-fun-at-all journey, but one in which He showed Himself in great and mighty ways.  The emotions of it all are still overwhelming, and today as we celebrate the miracle of Harper’s first birthday, it will be a day of reflecting and processing not just the joyful emotions, but also those painful ones.  We have already had our big celebration with the world, so today will be a day for this mommy to cherish her baby, to love on her and hold her and thank God for her… to savor those moments that I didn’t get to have one year ago, but that God has so graciously allowed me to have now.

http://https://www.youtube.com/watch?v=0indb2AAhMk

Learning to be a mom

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I have this ugly tendency to spew my emotions on Facebook.  Not all the time, granted, but on those days when mommyhood is stressing me out and I feel overwhelmed by the demands of diapers and feeding and schoolwork and sibling rivalry and tantrums… I feel this need to release some pressure in silly posts on Facebook, and I find great encouragement when other moms out there validate my feelings!

Today was one of those days.  I looked at the clock and realized that I had been in my kitchen for over two hours.  That’s right- the kitchen.  No other room in my house, not even the bathroom.  Between preparing breakfast for my two older girls and making bottles and baby food for my little, then dishes and cleaning counter tops and meal planning for the next week and mopping sticky orange juice from the floor (oh yea, like I said, one of those days), my morning was gone.  And as I stood there in my kitchen looking at the laundry mountain in the next room and listening to the baby cry at me from her high chair and the sounds of the monkeys pulling hair and calling names in living room, I had a momentary meltdown.  I realized that this stay-at-home mom gig is HARD.  I realized that homeschooling is HARD.  And I realized that the expectations that I have for what my children should be and what my home should be and what I should be are HARD.

So, in the midst of the chaos that is life being lived in this home, I sat down and had myself a good think.  And this is what I came up with… Lessons I have learned about being a full-time, homeschooling mom to three.

1. There are no “breaks.”  Now, I complained about the lack of “breaks” I had when I was teaching.  And, granted, they were few and far between.  But, wow, how my definition of a break has changed!  Most days, my break is running to the bathroom and locking the door as fast as I can so that they (those little munchkins that have invaded my home) cannot find me.  Well, actually, they find me, but they can’t get to me if I lock the door fast enough!  (However, that does not stop them from trying to break the door down, wiggling their fingers at me under the door, and yelling their requests at me through the closed door). And when they are finally sleeping for the night (an ordeal in and of itself), I’m faced with all of the unfinished business of the day (laundry, housekeeping, showering, laundry, paying bills, laundry…)

2. My house will NEVER be clean.  Because somehow, as soon as one room is clean, the other six rooms of the house have been devastated by a massive tornado disguised in the bodies of three cute little girls.  It is a never-ending cycle of destruction, and I am learning to embrace the fact that our house is lived in.  It may frighten some (most) people to see the clutter and mess that we live in, but it is a sign that my children are alive and healthy and creative and enjoying the gifts that God has given them… and that Mom and Dad are in there enjoying their three little God-given gifts as well.

3. My grocery budget is not large enough.  And I’m not sure that it will ever be.  So, add couponing and meal planning (as in all three meals and snacks in between) to my to-do list!

4. I spend the bulk of my day in the kitchen as life seems to revolve around meals and snacks and cleaning up in between.  Apparently little girls eat way more than most grown adults, and my girls eat like wild animals (and spill things left and right as they are graced with their mother’s lack of grace).  Fortunately, despite my small kitchen, we have a nice, open floor plan so that I can still see most of the house from the kitchen sink!

5. Comparison is the thief of joy.  I cannot spend my days looking at my messy life and comparing it to what I think I know about another person. I’ve done it time and time again, and it always leaves me disappointed and discouraged.  We don’t tend to showcase our chaos… I must not compare my lows with someone else’s highs!  And I have to accept that what works for one family does not always work for another- my focus must be on God’s plan for my family in this season of life.

6. I am blessed.  This one came to me as I watched my sweet little miracle baby working with her therapist today.  For a moment, the big girls were quietly working in their rooms, the living room was semi-clean, and I felt a rush of warmth come over me as I watched the therapist hold my girl in her arms, loving on her and celebrating her triumphs with me.

Harper’s face lit up with a smile, and I was reminded that my role as a mommy is challenging and demanding, but it is the greatest, most valuable, rewarding, fulfilling, amazing job that I could have, and I am beyond blessed that God has entrusted these three children to me.  I’m learning as I go, but thankfully God has enough grace to cover my mistakes and mishaps, and, at the end of the day, no matter how much love I feel for my loves, He loves me (and them) even more.

Another all clear!

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As traumatic as this day was on my mommy heart, all ended well.  It was a long two and a half hour wait in the waiting room as my baby girl was in the care of the doctors once again, but she handled it all like a champ!  She is very cranky as she’s fighting the side effects of the anesthesia, but the results were great.

Harper’s growth is right on target- 19 pounds, 27 1/2 inches long, and a stable head circumference of 46 1/2 centimeters.  Her MRI was also stable, and even showed a slight improvement.  No drastic changes, but her ventricles seem to have gone down ever so slightly and are evening out.

So, the verdict is that God has shown off once again.  Harper is amazingly perfect and so very tough- God’s hand is all over this baby!  Even after the events of the past two days, she was smiling and babbling and going with the flow.  As long as no problems arise we do not have to see Duke again for a whole six months!  We will follow up with all departments at that point, but no major tests or scans, just check-ups.  Then, in a year, we will do the scans again.

All I can say is praise God from whom all blessings flow!  There truly are no adequate words when it comes to the miracle He has given us.

Revisiting

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With a squirt of soap, a floodgate of emotions burst.  That scent of antimicrobial hand cleaner in the bathroom of Duke University Hospital hit my nose and sent me reeling back to the days of scrubbing up to my elbows until my skin was raw… The days of asking for permission to see my own baby girl, of donning a worn hospital gown over my own clothes to protect her from germs, of watching her vitals on the monitors and feeling my heart drop with every alarm, of maneuvering around breathing tubes and drains and IV lines just to touch my bundle of joy.  Remembering rushing to the hospital in the early morning to sit by her isolette and listen to the doctors discuss my child with words and terms I never dreamed of understanding and then having to walk away from her at night, trusting her life in the hands of strangers that were really angels dressed in scrubs.

I pulled myself together in time to sit in the waiting room and hear the sound of the helicopter coming in for a landing- that same sound that carried my newborn baby hours away from me on her birthday.  I remembered so vividly trying to hold my precious girl so tightly in my arms as the life flight pilots gently pried her away from me, watching them strap her in that plastic box on a stretcher and wheel her down the hall, and laying alone in my own hospital bed as that awful sound of the helicopter got louder, then faded into the distance.

So many other heart-wrenching memories flooded my mind today, triggered by the smallest things… Watching the nurse wrap the pulse ox around Harper’s toe, that red light glowing under the tape; walking to the ICN window to speak to the folks who were such a blessing to us; seeing those weary families trying to find some rest in the waiting room; an infant being wheeled down the hall in a plastic box of a crib, covered completely by a blanket to protect her from stares; getting our red plastic armbands at the Ronald McDonald House; being away from my big girls and leaving them home with family… It has made for an emotionally draining evening for sure.

Tomorrow will be even more trying as this mommy prepares to turn her baby over to the doctors again.  While it is just for an MRI, it is causing me much anxiety.  Harper will not be allowed to have any food or bottles after midnight, as she will be under general anesthesia tomorrow.  We will take her to pre-op around 9:00 in the morning, and she will have to have IVs put in.  She is part of a special study being done here at Duke on a medication they use, which means she will also have to have blood drawn and have an EKG before and after her tests.  This will be the first time since bringing her home that we have to leave her with the doctors, and it is already breaking my heart!

Her scan is scheduled for 11:00, and then she will go to recovery until the meds wear off.  We will then meet with Dr. Fuchs, her neurosurgeon, around 3:00 to discuss the results.  On her last scan she still showed some areas of fluid, brain damage, and cysts, but it was all stable.  We are praying for miraculous results tomorrow.  She is an amazing little girl and shows no signs of brain trouble at all, so we know God is taking good care of her!  Thank you all for praying with our family tonight and tomorrow… God hears and answers those prayers, and we are so grateful!

Too, too good…

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Today was a big check-up day for Harper at the Nunnelee Clinic at the hospital here in Wilmington.  It was technically a 6-month developmental check, although she’ll be 7 months old tomorrow (hard to believe).  She was able to show off today for the psychologist, the dietician, the physical therapist, and Dr. Digiuseppe (the doctor who attended to Harper on her birth day and sent her on to Duke).  And show off she did!  They tested her in all areas of development, and across the board she measured in the 7-month range… right on target!  Each person that visited told us how amazing she is, and Dr. D just shook his head and said she is “too, too good.”  One nurse said that it was unbelievable to see Harper in person after “knowing” her through her chart and records… it doesn’t add up in the medical world!

Harper is currently weighing 18 pounds, and we are finally able to make adjustments to her formula.  We are backing down to a regular calorie formula, and transitioning from Elecare to Nutramigen.  We don’t have to go back to the clinic until her first birthday, and they expect her to be discharged from her therapies at that time!  Harper is almost sitting on her own, rolls front to back and back to front on her own (but only on her own terms!), lifts her head, tracks objects, crosses midline, uses both sides of her body, picks up small objects, makes vowel and consonant sounds… I could go on and on about all of the amazing things she does, but you get the point!  It is such a joy to truly have reason to celebrate each of these milestones with her… I tended to take these for granted with my first two loves, but now we can relish in the fact that life is a miracle.  What we think of as “normal” is actually a gift of grace, and we’re so happy that God has taught us to recognize Him in the normal, every day accomplishments of our children.  Sometimes our experience with Harper has seemed like a dream, and we can’t understand why God chose us to be the parents of such a beautiful miracle, but we are ever so grateful for this gift!  The doctor said Harper is “too, too good,” but we say God is too, too good!

Developmental milestones

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I’ve waited all day to type this post, but my sweet little miracle kept me fairly busy today!  This morning Harper had her six-month well-check with her pediatrician, which of course meant the dreaded vaccinations.  So, we spent most of the afternoon snuggling and resting in mommy’s arms… Which was perfectly okay with mommy!  I know all too well how quickly these days of wanting to be held and cuddled will pass, and I spent many days longing to hold and cuddle my girl, so I am perfectly content to spoil her rotten.

Anyway, back to the well-check… Harper is up to almost 17 pounds, which keeps her in the 75th percentile for weight.  This was a huge relief because her appetite has decreased quite a bit over the past few weeks… But apparently that isn’t affecting her weight.  She is 27 1/2 inches long, putting her in the 95th percentile for length (still not sure where that gene came from!).  The best news in her measurements was her head circumference- still off the charts, but no increase!  She’s maintaining right around 45 cm, so no apparent fluid increase in the past couple of months…. Woo-hoo!!

However, the news that brought tears to this momma’s eyes was that the doctor could find nothing developmentally wrong.  Harper passed all of the major developmental milestones they look for at six months.  Over the past few weeks, I’ve spent a lot of time remembering those initial days of learning of Harper’s diagnosis.  I remember sitting in the triage room of the hospital and the doctor telling us with tears in her eyes that things did not look great, that there were too many unknowns about our baby’s future.  I remember the fetal specialist sitting with us and a counselor in her office informing us that she just didn’t know if our baby would make it or not, and that even if she survived, her quality of life would be in question.  And then the specialist at Duke telling us that while she felt confident that Harper would survive, she, too, was uncertain about what her future would hold in terms of her brain function.

But our girl did survive.  She came into this world fighting, ready to show us all that God’s plans cannot be predicted or explained.  She beat the odds, even when surgery went wrong.  She kept fighting even when her little heart was weak, when she couldn’t breathe on her own, when she became drug-dependent, when eating was a challenge… When her life seemed impossible, she reminded us that nothing is impossible for God.

And now, at six months, not only is she still alive, but she is thriving.  She is growing and developing and doing all the “normal” things no one ever thought she would do.  She’s curious and determined and full of joy… She is an undeserved blessing, and I pray that I never cease to give praise to the One whose plans for her far exceed anything I could dream.

A day at Duke

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Today was Harper’s big follow-up at Duke.  She had three appointments at the children’s hospital- neurology, neurosurgery, and ENT.  We visited with neuro first, and both her neurologist and neurosurgeon were very impressed with her progress.  While her most recent MRI showed areas of brain damage, fluid retention, and cysts, it is all stable.  There is no significant bulging of the skull and developmentally she is steadily improving.  They attribute this to her young age- because she was so young when all of this damage took place, her brain was able to rewire itself to fire differently, causing less delay thus far.

From the ENT… Harper’s laryngomalacia is continuing to improve and we barely hear the noisy breathing anymore.  Her reflux is still acting up, so we are continuing the reflux meds and trying some cereal.  The ENT will continue to watch her, keeping an eye on her breathing, her reflux, and her speech patterns as she gets older.

Over the next six weeks we will start weaning Harper off of her seizure medicine.  She has been on it all of her life so far, so it’s a little nerve-racking on our end as we watch to see if she will have an issue with seizures.  We go back to Duke in three months to follow up with the ENT again, and to have an MRI under sedation.  In the meantime, we will just continue to watch her and continue working with her therapists at home.

The overall summary- God is good and our girl is a miracle that no doctor or medical book can explain.  Yes, there are still issues and uncertainties, and as a parent nothing is harder than holding your baby and not knowing what could happen with her at any given time.  But she is amazingly ahead of what her doctors ever hoped for her, and we know we have been blessed far more than we deserve.  So for now, we will continue to watch and observe and monitor, and pray that God continues with the miracles!

And we’re rolling!

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Who decided to show off today and once again prove everyone wrong?  This girl!  Just three days shy of her 5-month birthday, Harper rolled over and pushed herself up completely on her own from her back to her belly.  And then discovered that if she pushes hard enough when she’s on her tummy, she can flop over to her back and avoid the dreaded tummy-time.  This mommy sat and had a good cry over this roll… Every obstacle we prepare to face gets blown away by a great big God.  I don’t deserve these blessings, but I’m so very grateful for them.