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 

Another all clear!

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

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!

Victory in Jesus

Today we worshipped with the old familiar hymn, "Victory in Jesus."  It's on my list of favorites as I always hear my granddaddy singing it with all his might.  But today the second verse hit me in a new way and brought me to tears...

"I heard about His healing

Of His cleansing power revealing,

How He made the lame to walk again

And caused the blind to see.

And then I cried, "Dear Jesus,

Come and heal my broken spirit."

And somehow Jesus came and brought 

To me the victory..."

I don't always take hold of the victorious life He has promised, but somehow He still gives it freely.  As we sang this verse, I was struck by how blessed I am to have not only heard about His healing, but to have witnessed it firsthand!  I have struggled to understand many things about this crazy life over the past couple of years, and I still can't make sense of most of it.  But I know God gave me Harper for a reason.  He has used her precious life to remind me of Who is in control... To restore my faith, show me the meaning of hope, and to heal my broken spirit.  I still don't understand all the what's and why's, but I've been reminded of the Who.  And as I lay down tonight with a head full of thoughts and a heart full of emotions, I pray that I find rest in that Who, that I claim the victory He has promised, and that I never cease to give Him praise.

Too, too good...

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

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

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!