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!

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!