This morning we got to make our first “normal” visit to the pediatrician for Harper’s four-month check-up… And yes, it was a bit late, but they tried to give us a little break between appointments!  Overall, things went well.  Harper is up to 15 lbs 6 1/2 oz, which is keeping her in an average growth range… So we are going to keep her on the higher calorie formula for now.  She is 26 1/4 inches long, putting her in a higher percentile for length (don’t know where she gets any height from!).  Harper also received her vaccinations, which were nothing after all she’s gone through!

After a roller coaster ride of a day, we are preparing to head back to Leland!  We saw multiple doctors and specialists today, and there was concern that Harper was leaking cerebral fluid into areas she shouldn’t be.  They came in and decided to do pre-operative bloodwork, put an iV in (which Mommy had to hold her down for), and prepared a room for her upstairs in the pediatric unit.

Well, here we are, sitting in the emergency room of Duke hospital with Harper.  The very thing we have been praying to never see has started to show itself.  As we know, Harper still has an enlarged ventricle full of fluid.  The concern is that the fluid will continue to build and cause pressure, and one sign of that is bulging in her skull.

I always love visits with Dr. Fuchs, Harper’s neurosurgeon.  Naturally, we think he’s great as he worked so hard to save our baby’s life.  But he also has such a calm manner and way of explaining things thoroughly in a way that we can totally understand, which is so helpful given all of Harper’s history.

Today’s visit went well.  Basically, the c/t scan Harper had on Friday was the first “normal” scan that she’s had, so it is serving as a baseline at this point.  Her previous scans were done very close to her surgeries, so her brain was still recovering and reorganizing.  As Dr. Fuchs pointed out again today, Harper is far from a textbook case.  Her condition has been unique and special from the very beginning, and she is still keeping everyone on their toes.  The cysts that developed in her brain were not true cysts- in fact, he still is not able to identify what they are or where they came from.  It’s a total mystery, and that coupled with the hydrocephalus and brain hemorrhage have made for some interesting brain scans and images!

The most recent c/t scan shows that her left ventricle has decreased significantly in size and is much closer to normal than it was initially.  Her midline shift has straightened out… initially her midline was disorganized and all over the place, but now you can actually see a line going down the middle as it should be.  Her right ventricle is still very large and contains fluid.  Basically, the cysts had caused much fluid to back up in her ventricles and that compressed her brain tissue.  The cysts have been drained so that the fluid can flow naturally, but for now the ventricle is still large and hollow.  The goal is for her brain to expand and grow and fill that void, but it hasn’t yet.  Something has to fill that area, so for now it’s fluid.

So what does that mean?  Things are still up in the air, but no more than they ever have been with Harper!  For now, the fluid does not seem to be causing increased pressure- Harper is still active and responsive and interacts with us and is showing signs every day of developmental improvements.  There are no bulges in her skull or soft spot, which would occur if pressure was mounting.  Therefore, there is still no immediate need for a permanent, internal shunt.  That is an option that will forever be on the table for Harper, but right now she’s managing fine without it.  We do, however, have to keep a close eye on her for any indications that pressure is increasing, and she will return to Duke in a month for an MRI under general anesthesia with Dr. Fuchs to get a better idea of what’s going on with her brain growth and development.  No one is really able to predict what areas of Harper’s brain have been damaged and the extent of that damage, and she certainly has proven that she doesn’t follow anyone’s rules or expectations!

As hard as it is, we keep pushing forward, taking it a day at a time, and try to accept that it’s all in God’s hands!  As a mom (and, let’s face it, a control freak), it is a serious challenge to let go of the reins and continue following Him into an unknown future… but for now, thanking God that He gives grace for each moment as it comes, and praising Him for the miracle of every smile, every coo, every giggle, every snuggle…

Which brings to mind this great song… “Miracle of the Moment” by Steven Curtis Chapman

Our first major appointment of the week is officially DONE!  Harper had her first developmental clinic at the Nunnelee Specialty Pediatric Clinic at the hospital here in Wilmington this morning, where she was evaluated by different medical professionals.  We saw a doctor (actually, the doctor who saw Harper the day she was born and sent her to Duke), a nutritionist, a physical therapist, and another therapist/evaluator who assessed her cognitive development thus far.  Harper did amazingly well.  She cooed and smiled and interacted with everyone, and only got mad one time!

The results?  Here they are (and bear with me on all the details- this is my way of keeping track of everything for myself!)… Her growth is perfect, so no more diagnosis of oral aversion, and no more consideration of a g-tube.  She is in the 50th percentile for both height and weight, and is currently up to 14 lbs. 6 oz.  We are remaining on the Elecare until she is about 6 months old, then attempting to start transitioning to regular formula.  Her cognitive development is right on target, and they assessed her to be at the four-month mark.  Her motor development is where we are seeing some delays at this stage, which lines up with what her pediatrician and her therapists have noted.  Today she was assessed at a 3-month mark in terms of fine motor skills, and only the 2-month mark in gross motor skills.  It was also noted again today that she does still have a preference for her left side, but it is improving. At this stage it is still unclear if these delays are just a result of having such a rough start to life and not having the opportunity to develop normally at first, or if it is due to a neurological issue. Regardless, Harper will get all of the help she needs to continue down the right track!

Overall, everyone is once again amazed by Harper and what God has done in her in such a short time.  Her medical history and records cause people to expect the worst, but they’re always surprised when they meet her.  Yes, she has some delays at this point, but they are so minor and insignificant in comparison to what was predicted for our precious girl, and we feel confident that she will no doubt overcome those obstacles in time.  For now, the doctors will continue to follow her growth and development, she will continue to work with the awesome therapists on her team, and we will continue to pray and praise God for the daily miracles we get to experience through Harper… signing off until our next adventure to Duke tomorrow!

It has been a busy couple of days here at the Whitley house!  After Harper’s pediatrician visit on Wednesday, we had a home visit from her Early Intervention Services coordinator to touch base and develop her Family Services Plan.  Basically we just set some goals for Harper to work on with her therapists, filled out more paperwork, and received some resources for parents of children with exceptional needs.  I haven’t looked into any of those resources or support groups yet.  As I was discussing with my mom earlier in the week, there tends to be such a negative connotation associated with the term “special needs,” and I’ve been trying to process through that.  So many people are quick to assume the worse when you use that term, but the reality is that it covers a wide expanse of needs that children can have.  And to be quite honest, as a mom and a teacher, I think all children are special and have unique gifts and abilities and needs!  But my opinion is neither here nor there, so moving on…

Harper did amazing with her physical therapy yesterday.  She tolerated tummy time and made good attempts to lift her head.  She tracked objects and turned to look at things, and put real effort into trying to grasp objects.  She did not get as irritable as quickly as usual, so that alone was huge progress.  At this point we are working on stretching her neck and chest muscles, encouraging her to look to the right more, and still practicing grasping objects.  Harper has improved some, but there is still a lag in the movements in her right side.  Her therapist said this is more of a neurological issue, but that it should continue to improve with lots of practice and work.

We had a major praise for Mom and Dad’s wallet yesterday as well… our insurance provider has finally given authorization to cover the cost of Harper’s formula!  She is still on Elecare, which has to be ordered through the internet or through a medical supply company, and at this point runs somewhere in the range of $400 a month.  We’ve been ordering it ourselves up until now, and we were afraid we were going to have to discontinue it and try something else due to the cost.  In fact, the doctor had just given us some sample formulas to try, but once again God’s timing is perfect and we got the authorization before making the switch!

This morning was Harper’s c/t scan to check her head.  Of course, her appointment happened to be in the middle of Tropical Storm Andrea, and, silly as it was, I worried about that all night!  I was uneasy about taking her out in bad weather and driving in rough conditions, but amazingly everything was perfect.  It barely even rained during our trip to Cape Fear Hospital and back!  And even more amazing was the fact that Harper slept through the whole process- she didn’t even wake up when we moved her from her seat to the table for her scan!

Her pediatrician called this afternoon with the results… They did not have access to the imagery from Duke, so all they had to compare this scan to was the initial scan she had before surgery.  Obviously things look very different now as there was some damage from the hemorrhage during the first surgery and the fluid was drained off while at Duke.  But so far they don’t see any glaringly urgent issues.  The neuro at Duke and the pediatrician both agree, however, that Harper should go ahead and be seen at Duke sooner rather than later.  So, we should get a call Monday letting us know when they can work her in up there in the next week or so.  Between now and then, we keep praying and enjoying our precious little girl!

Tonight my heart was flooded with emotions as I rocked this sweet angel to sleep.  Why?  I really can’t explain.  Today wasn’t a special date, nothing new happened… it was just an ordinary day.  Or, rather, as ordinary as our life ever is.  I was sick, Raegan was sick, it’s the last week of school, and Kirby is preparing for a two-week military leave, so the day has been filled with busyness.  My mind has been running in a million different directions and my calendar is out of empty space to write appointments in, but life just paused for a few minutes as I rocked Harper to sleep tonight.  I was rocking her while talking to Kirby and watching Maddie run around the house, and I felt Harper’s fingers lock around my finger.  In the midst of all the chaos I glanced down at her.  Time stood still as I saw that she was gazing up at me, studying my face, and when I made eye contact, she broke into this huge grin behind her pacifier… and my heart melted.  My mind drifted back to those days at Duke, when her head and face were covered with breathing tubes and drains and monitors… how I would long to see her open her eyes for just a second, how I would hold on to her tiny little hand and pray for God to work miracles in her precious body… how I wondered if I would ever hear her cry, if she would ever recognize my face, if I’d even get to hold my own baby for a few minutes, much less rock her to sleep.  And tonight I was once again humbled at God’s amazing power and love as she held onto my finger and grinned at me, and fell asleep in my arms.  I am so very grateful that God has given me this little person to be a constant reminder of how wonderful He is…

This is how we spend much of our time these days… yes, that’s right, bouncing on an exercise ball!  Of all of the things that I’ve done to calm crying babies, I never would have imagined using an oversized bouncy ball.  But for Harper, this does the trick!  For some reason that motion settles her like nothing else we do… so, we bounce.  And Mommy gets to work her core and legs at the same time- double blessings!