Precious Eyes

Yesterday Abby added a new diagnosis to her long list.  During her yearly check-up with her retina specialist he decided to check the pressure in her eyes.  As I watched his face during the short test I quickly realized something was wrong.  They poked both of her eyes with a small tool and read the numbers. 

Normal eye pressure falls between 8-21 mmHg.  Abby registered 48 mmHg in her right eye!

The doctor looked up and told me that Abby has glaucoma.  Her right eye is not draining the fluid properly so it has been building too much pressure.  Abby's history with ROP (retinopathy of prematurity) and her multiple eye surgeries have caused scar tissue to clog the drainage system in her eye.  If left untreated, the building pressure in her eye can eventually damage the optic nerve and completely destroy any vision she has left.  

ROP is one of the many complications of Abby's prematurity.  It can rob normal vision from it's tiny victims.  In our case, Abby started receiving eye exams just a few weeks after her birth.

Her first exam was delayed a little longer than other preemies her gestation because she was in such critical condition.  After about 8 weeks of weekly exams she started showing signs of Retinopathy of Prematurity.  This is abnormal blood vessel growth inside the developing eye.

The majority of eye maturation occurs between 28 and 40 weeks gestation.  When a baby is born too early, the normal development of these blood vessels stops.  The body some how triggers new growth (long list of possible reasons: oxygen, being on ventilator, other complications) but it can become very abnormal, forming scar tissue that eventually grabs the retina and pulls it away from it's natural position against the back of the eye.  

Abby had treatments for ROP beginning with laser in both eyes.  She remained stable for a while but eventually showed drastic eye changes that needed more treatment.  She was transferred to the University of TN's NICU for a special surgery to repair the worse eye.  This surgery failed and the surgeon told us there was no hope. 

 Our wonderful neonatologists at East TN Children's shared one last idea before we gave up.

I flew with Abby in a special medical transport plane to Michigan for treatment at William Beaumont Hospital.  Dr. Trese is a world renown retinal specialist who specifically treats premature infants.  During our month long stay in MI Abby had 2 more surgeries (vitrectomies).  One retina reattached and one remained completely detached.

Abby's vision is still not entirely known to us.  According to her records her left eye's retina is completely detached with no vision potential... but we know she can see light.  Her right eye has a reattached retina, a visible macula and a pale, intact, optic nerve.  We know she sees light and also some objects in that eye.  

Abby is now getting eye drops twice a day in her right eye, and will see a pediatric glaucoma specialist in Birmingham next Thursday (July 3rd).  Our doctor told us children usually need surgery to correct the problem.  

We find ourselves starting down a new road of unfamiliarity.  It seems strange that Abby's vision could get any worse... but I suppose we shouldn't be surprised at anything.

Another chance to learn to Trust our Lord.  It makes this verse have a whole new meaning.

"Trust in the Lord with all your heart and lean not on your own understanding; In all your ways acknowledge Him, and He will make your paths straight."

Proverbs 3:5-6

My Utmost for His Highest devo for today!  Seemed fitting to share.

Happy Father's Day!

Since I haven't posted in a while, I thought I should put something up!

Abby is finally feeling better.  She had more fever this week, but now it's gone and the mucous is making it's way out as well.  Finally!

This past weekend we went to TN to celebrate Father's Day!  We had a wonderful time with family just being together.  Saturday we went to the zoo with Grandma, Papa, Aunt Connie and Matt which was really fun.  It was cool enough to enjoy walking around the park, checking out all the neat animals.  Josiah still remembers a lot of his animal signs which was good to see.

That night I got to see my sis and her girls!  We enjoyed chatting, catching up, talking about pregnancy (she's expecting) and watching the girls play.  I always feel refreshed after being with them.

Sunday morning I got Patrick up very early (4:30) to go to a special spot we used to enjoy before we were married.  It did involve hiking, so I'm pretty impressed with both of us that we made it to the top,  despite our minimal energy.  It was definitely worth the effort as we enjoyed the gorgeous early morning view!

We spent almost the whole afternoon on the lake!!  Another favorite for me.  Basking in the sun and actually swimming for the first time this summer.  The kids both got in the water, although we did see a few tears from J.  He wasn't sure he liked skiing on the big disk.  Papa and Grandma's boat is always a fun treat!  

Abby seemed to love the water, she was so relaxed and even kicked her legs a little. (more pictures to come)

Now we are home back into our routines.  This week we hope to hear back from the surgeon about Abby's upcoming surgery.  Long story made very short, we are expecting that Abby's file is now containing all the necessary missing pieces for the surgeon to examine.  I left a message for his nurse this morning.  So now we wait to speak with them again.  Hoping for a more complete, encouraging conversation this time.

It's difficult looking forward to surgery... not because we want it, but only because we feel that Abby needs it.  She isn't thriving on her GJ feedings and continues to lose skills that she seemed to enjoy just 1 year ago.  It brings so many mixed feelings.  Dread of surgery and hope of healing.

Thanks for remembering her!

Fever = ER for Abby

This weekend we had the privilege of a visit from Grandma and Papa!  While Patrick and I worked on our "almost remodeled" bathroom, Josiah and Abby played with G and P.

Saturday morning Abby woke up with a fever and some coughing.  We started loading her up with Motrin and Tylenol, trying to keep her hydrated and comfortable.  From past experience I went ahead and pulled her Diastat (emergency seizure med) out and left it sitting out on the kitchen counter... easily accessible. 

She had a restless night and coughed a lot.  Trying to keep her fever down we set the alarm to give Motrin/Tylenol through the night.

Sunday morning she still had a fever with some jerky movements.  Eventually the jerky movements turned into rythmic twitches of her lips; which turned into twitches of her left hand, and arm.  With in about 30 minutes of this pattern, including swiping her VNS every 3 minutes or so (which temporarily stopped the seizure), these focal seizures turned into general convulsions.  Fortunately we were ready this time with a new plan!

As soon as the seizures turned from focal to general we dosed her with the Diastat, made the necessary phone calls to her doctors, and loaded her into the van.  By the time we left the house (7 min after Diastat) her seizures had stopped and she was totally out of it.  We drove to the ER as instructed and calmly went through all the registration procedures.  It was really nice not being in a huge panic, running into the ER with Abby still seizing out of control and the staff pouncing on her.

Once she was settled in a bed and hooked up to the monitors we sat back and relaxed for the most part.  Abby slept, and they agreed to not stick her for blood work and IV fluids unless it became necessary.  It was the most organized and easy going trip to the ER we've ever had.  The neurologist wanted to keep her until the meds wore off (4 hrs), but then she spike a high temp (104) so they kept us another 2 hours to make sure she didn't seize again.  We left the hospital around 6 pm, just in time to be home with our family to enjoy a nice dinner together.

Today we met with our neurologist in her office for a scheduled appointment.  Basically we talked about yesterday's event, confirmed our plan of action, addressed her medications again, increased her VNS settings and discussed her reflux symptoms and requested a letter of release for surgery.  She told us it is very common for surgeons to ask for a neurology release before having surgery.  This made us feel better.  

We learned something new too.  She said Abby's VNS will have to be turned off before surgery b/c of a tool commonly used to cauterize that would influence the VNS function.  It is simple to turn off by using the wand also used for dosage setting.  It will be done by a neuro nurse practitioner at Children's before surgery, and then will be turned back on after it's over.  Glad to know that!

We also found out she has lost more weight.  She's down to 12 kg (26.4). 

Then we discussed the possibility of a port placement for future blood draws and IV meds/fluids that might be needed.  She explained the risk of infection that comes with a port placement would also put the VNS at a much higher risk for infection.  If the VNS becomes infected it would most likely have to be removed.  This new insight drops the need for quick IV access down a few notches on our priority list for Abby.  We might reevaluate in the future if things change, but for now we are glad to have this decision made.

Poor Abby is still pretty miserable.  Her fever is down some, but she is coughing a lot and is also now vomiting.  Today hydration has become our focus and just trying to keep her comfy.

Sickness sure is a drag, but at least we are home!

His Assurance

"... Never will I leave you; never will I forsake you.'  So we say with confidence, the Lord is my helper; I will not be afraid.  What can man do to me?"

Hebrews 13:5-6

We had our appointment yesterday in Birmingham with the GI surgeon for Abby.  He was a sincere man, a good listener and it was obvious he wanted to help Abby.  

In an attempt to keep my emotions in check, I'll keep this brief (or spare you the details).  

Some very important information seemed to be lacking from the file the surgeon was holding.  We did our best to describe the past 9 months of symptoms and numerous tests/procedures that Abby went through to finally end up in his office.  As we concluded our visit it was decided that in light of the fact that our "puzzle" was missing some pieces, we needed to gather more information before surgery can be scheduled.

We've made our (several) phone calls, requests for clarification and are currently gathering more information to add to her file.  

Giving this issue up to the Lord and actually letting go of it has proven to be a heavy challenge for me.  This is all I can say at this point without becoming irrational in my writing.

So, instead of flowing with my natural tendency of worrying about Abby until I get physically sick, I'm actually trying to pry my fingers open to let God take her.

I read in My Utmost For His Highest today:

"My assurance is to be built upon God’s assurance to me. God says, "I will never leave you," so that then I "may boldly say, ’The Lord is my helper; I will not fear’ " ( Hebrews 13:5-6  ). In other words, I will not be obsessed with apprehension. This does not mean that I will not be tempted to fear, but I will remember God’s words of assurance." 

 "The faith of many people begins to falter when apprehensions enter their thinking, and they forget the meaning of God’s assurancea— they forget to take a deep spiritual breath. The only way to remove the fear from our lives is to listen to God’s assurance to us.

What are you fearing?"  

"When it seems that there is nothing and no one to help you, say to yourself, "But ’The Lord is my helper’ this very moment, even in my present circumstance." 

"Take hold of the Father’s assurance, and then say with strong courage, "I will not fear." It does not matter what evil or wrong may be in our way, because "He Himself has said, ’I will never leave you . . . .’ "

Human frailty is another thing that gets between God’s words of assurance and our own words and thoughts. When we realize how feeble we are in facing difficulties, the difficulties become like giants, we become like grasshoppers, and God seems to be nonexistent. But remember God’s assurance to us— "I will never. . . forsake you." 

Enough said.

We are earnestly praying for God's will to be made known to us about Abby's life.  Her reflux symptoms have practically consumed us (in addition to many others) these past 9 months.  Patrick and I have done everything in our knowledge and power to avoid surgery.  We've watched her gradually losing weight, losing oral skills, losing the ability to swallow her saliva.. the list goes on.  

But also just like all of her other challenges, we are COMPLETELY powerless to fix them.  We find ourselves thrown back into the "Spiritual School" of Trust.  Do I really trust Him? Do I trust Him to orchestrate every detail pertaining to her health, growth and comfort?

I can honestly say that trusting the Lord is my only goal for this day.

Our family would be so grateful if you would pray with us for resolution of this problem.  Specifically for healing, for clarity in communication among all of her physicians, and lastly for wisdom.

Thank you!

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.  Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God."

Hebrews 12: 1-2

Girls Weekend + 1 Little Man

The kids and I went to TN to spend a wonderful weekend with my sis and her kids!  We always have a blast together.

Thanks girls!  We miss you...

(Before playing, skip to the bottom of this page to pause/stop blog music)