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.
6 comments:
oh Patty... sometimes I read your blog and think... Lord, can you give them a break? But He knows all and I can only sit here and pray for you guys. I have absolutely no medical experience, but could this eye problem be a part of the mystery fever? Try and rest and know that people all around the globe are praying for you.
Patty, thanks so much for sharing this history. I didn't know that part of your story. I know there's so much we don't know . . . but we see your and Patrick's steadfastness in Jesus and are confident with you that He is with you and has His plan in it all.
I had read a few of those lines from My Utmost flip calendar and wanted to send them to you. Are they powerful or what. Thanks for sharing. We'll continue to pray.
We got our pool pass so you'll have to come over and swim!
Patty,
I found your blog tonight and read about Abby. Please know that I will pray for that precious child and your family. I am so touched by your faith and your strength. There are so many things that happen in our lives that we just can't understand. But, if there is one thing I learned during our journey of loss, it's that God never leaves us. You are such an inspiration. Please know that you and your family are in my prayers.
Amy
I'm sorry for the difficult news about Abby's vision. We're praying for you. On a side note, you are so good at explaining everything that is going on with Abby medically, and your blog is very educational!
I agree with the first comment. You guys deserve a real break not news of another set-back. I hope the Dr. you meet will be able save Abby's vision from further loss. Her eyes are precious and she needs them to experience the world around her. We are thinking of you and your family.
Hoping and praying for ou always...
Love Kerry
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