Eye update from a mother's perspective

We left the appointment Tuesday with such heavy hearts and were so scared for Adley that we weren't able to process much until the past day or two. I just know that I know that I know, that she can see.  Matt and I were getting ready to go to sleep the other night and I just kept telling him, "I know she can see, I just know she can.  I know she doesn't follow their lights or watch me walk across a room 180 degrees, but she can see.  She's finally gazing into my eyes when she nurses and the way her face lights up when I peek over the side of her crib in the morning......she sees me.  I know she does."  And Matt said something to me that I'm so thankful for and that I had completely lost sight of, he said "You're her mom and you're going to know better than anyone else.  If you think she can see, she can see."  I fell in love with him all over again in that moment and I was empowered.  I know my child.  I am with her 24 hours a day and these assessments of her have been rather limited in the grand scheme of things.  This experience isn't just teaching me more about my faith being confidence in what I hope for and assurance about I do not see (Hebrews 11:1), but about me being the divinely appointed person of authority over her and what that means in regards to being her advocate in times like this. 

Dr. Hess said that when we thought she was looking at us or the mobile in her crib and smiling that she was probably just responding to sound. He stumped me on that one and I thought maybe he was right, so the past couple of days I've been doing my own "testing" with her and there isn't a doubt in my mind that she can see and track. It has to be an object of high contrast, like a black and white picture, I have to move it slowly and let her catch focus of it in front of her first, but she sees it, focuses and follows. I know she does. I'm not in denial that something could still be wrong, but a lot of the fears we left with on Tuesday have been lifted since I decided to trust myself and not just others.


In my heart I truly believe this is just a delay for her. I've researched and read over and over that if by 4 months of age they still cannot track or focus THEN further, more intense testing is ordered. Not at 10 weeks. Most babies make up for the lag within a couple of months and I know she isn't doing everything they want her to be doing but I'm a little frustrated that I don't feel like she was given a fair chance to just be a little delayed in eye development. I'm no doctor though and I do trust the ones we have for her, but now we are talking about the risks of sedation for the MRI which may not have been necessary had she been given more time. 

We are still waiting on their call to schedule the MRI and as of now, plan on going ahead with it since for some reason she doesn't seem to follow lights......yet. 

Here she is!

Adley's Neuro-Opthamology Appointment

I felt far from alone knowing so many people were thinking of us and praying for the situation as we waited in that room this morning......many of you were waiting with us this, on pins and needles, and it was such a great feeling for me.  As texts and prayers came through on my phone I got teary with gratitude to have such a wonderful, close knit group of people surrouding and uplifting us.
We went to the appointment feeling hopeful and confident in our perfect little package. We had seen noticeable improvement over the past few days as we witnessed Adley becoming a cooing, smiling, interactive part of our little family. She seldom expresses anything but contentment and joy......I could learn a lot from her in that regard. She laughs at Elyse, we all do, and seeing our two little girls getting to know each other is such an overwhelming gift.
I was a little nervous as they called us back from the waiting room, but sure this visit would go better than our pediatrician check-up that led us here.....she was different now.
Doctor Hess was wonderful, a true gift to his profession. His exam of her was gentle and thorough and he answered every question and concern we voiced..............which I'm thankful for because we will be seeing him again.
When asked how her appointment went, I don't quite know what to say.  If I had to choose between "good" or "bad", the appointment went bad.
Here's what we know:
Structurally her eyes are normal. Her pupils are reactive, optic nerves present and healthy, her maculas are formed and of the appropriate size. Anatomically speaking, her eyes are perfect, both of them.

What we don't know is why she isn't using them at a developmentally, age appropriate level. Something I thought I'd previously ruled out is now still presented as a possibility. He could not assure us she wasn't blind and to consider the possibility that when we thought we saw her looking, she was following sound, not actual sight.

Given her eyes are structurally normal it's time to pursue what else it could be, which leads us to the brain and the neuropathways from the brain that control and send messages to her eyes and vice verse. He told us the list of possibilities is extremely lengthy and ordered her to have an MRI done to get a clear picture of her brain. We don't know the date yet, they will be calling us to schedule it and the results will take 1-2 days after that.

The possibilities of what could be wrong or what could be causing this is overwhelming. He did say, "If you take nothing else from this visit, please still realize everything could be just fine and she could show us later that she can see and use her eyes like she should." He said if her MRI comes back normal we can cross a lot of those things off of our list and if it isn't normal we can begin to narrow the list down as well.

Matt and I left the visit in a fog. I had a headache from forcing back tears and my brain didn't know what to attempt to process. Mentally and emotionally we want to begin to try to prepare ourselves for whatever it is this all may mean but there are so many possibilities that we don't know what to think.  Basically, in a nut shell, we still know nothing.  We know just enough to be worried and that's about it.

Right now we wait. Regardless of the MRI results we will still be waiting until Adley let's us know what she's seeing, not seeing, or if this deficit is much more involved than just her eyes, or if everything is perfectly fine. We will be waiting on her, our sweet, sweet baby girl. We wait and we pray and we trust.

Horse Power for Kids is where Elyse got to go for a pony ride with our mom's group.  It was a little over 50 degrees outside which made for a cold morning but gorgeous afternoon.  The kids all had a great time with the petting zoo, train ride, horses, etc. 

 Her pony had pink and purple hair!  All the girls wanted to ride her.

 First face painting at First Friday a couple of weeks ago.  I was amazed how fast they painted on her cheek and how still she stayed waiting to see the end result.


Elyse had horse power, Adley had flower power!

I've noticed a lot more interaction, tracking and focusing the past 2 days.  I'm starting to really think it's just a developmental delay.  I'm not sure what, if anything, that would mean for our family.  Perhaps it's just an eye muscle delay that is taking longer to strengthen or perhaps it's the first of several other delays that are to come.  Only time will tell. 

I am at peace about our appointment on Tuesday.  I am so in love with this little girl, she literally takes my breath away.  Friends have been so supportive and encouraging as I use them as sounding boards and ask them what they think as Adley pans her surroundings.  I've been reminded over and over to trust her creation, trust that her eyes are perfectly formed and beautifully focused, that she will see what God wants her to see.  I was focusing on coming to terms with the possibility of anything and everything being "wrong" that I lost sight of the faith I must have that IF something is wrong, it is purposeful.  Even if this all turns out to be a false scare, He has used this to strengthen us, and if something is different than what we anticipated, He will use that too. 

It's amazing how many lessons can be had from one scripture.  The verse I posted in my last entry, Ephesians 1:17-18, is something I'm committing to pray daily..... I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better.  I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you.  Our pastor encouraged us in that before these eye issues came to be and it seemed fitting to pray for wisdom and revelation in the knowledge of Him daily.  But as I meditated on that, having the eyes of my heart enlightened, reminded me that our spiritual vision is much, much more than eyesight. 

"Open the eyes of my heart Lord, I want to see you."
"Walk by faith, not by sight."

These things are taking on new meaning for me.  God is using my 10 week old baby to teach me so much. 

2 month visit

We had Adley's 2 month well visit with our Pediatrician this morning.  Elyse was at school, Matt at a conference, so it was just the two of us.  She weighed in at 12 pounds 5 ounces and almost 24 inches long (91% and 97%).  Most of the exam was brief until, once again, her eyes were checked. 

I'd had suspicions that, despite our positive visit with the Pediatric Opthamologist several weeks ago, something still didn't seem quite right.  Adley didn't follow me with her eyes and even though she shares those precious social smiles, she seldom focuses on faces or definite objects.  I quieted my concerns because of the prior good visit and told myself I was looking to hard and over-analyzing the most subtle of movements.  Apparently I wasn't. 

By 2 months of age she should be able to track a face/object 180 degrees from right to left.  At 9 weeks, she cannot do that, at least not that she has shown.  The doctor tried, she really did, up close, at a distance, using different objects, anything she could think of to get Adley to focus and track.  The longer she tried, the larger the lump grew in my throat.  I wasn't surprised but having my suspicions confirmed hurt.  It was one of the few times I really wanted to be wrong.

This time she has been referred to a Pediatric Neuro-Opthamologist at All Children's Hospital.  The "neuro" part, the doctor explained, is in case they need to do brain scans to see if there is neurologic involvement causing her delay or lack of development in this area. 

.....Brain involvement.....I processed the words in slow motion as I dressed my wiggly baby girl on that crinkly white paper.  Her legs kicked as my heart pounded.  I was handed a scribbled phone number on a scrap of paper, strapped Adley in her carrier, smiled and offered thanks as I left.  I'm not even sure if the door to the office shut tightly before the tears came.  They flowed so freely this time since I didn't have to hide them from Elyse.  I didn't just cry, I wept.  It was a violent, desperate, painful cry.  I was surprised it was all coming from me.  Thankfully no one was around as I pushed the elevator button attempting to catch my breath and settle my emotions.  I picked Elyse up from preschool with bloodshot eyes and tear streaked cheeks, I'm glad she didn't notice. 

And that was it.  That was all I was going to allow myself.  I had my emotional overflow, got the girls fed and down for naps and opened my bible.  I'm studying Ephesians right now, so that's what I read.   Several scriptures were encouraging, but more so than that, it was the calming presence of His spirit and the comfort only turning to the Word can provide.  I don't do that enough, I have no idea why it hasn't become a second nature habit by now but the significant change within my soul today will be one lesson further in making sure that it does become that way. 

I'm still nervous.  I'm admittedly afraid of what we do and don't know.  I truly can't describe how I feel.  But tonight, tonight I will rest in Him.  I will pray for God to give me a spirit of wisdom and of revelation in the knowledge of Him, having the eyes of my heart enlightened, that I may know the hope to which He has called me (Ephesians 1:17-18).

She's got dimples.....love that.

Adley, 8 weeks old

Elyse, 14 weeks

I'm excited to see if these girls continue to look so similar!

This will end

Night-time issues.

I'm solo supper-nanny this week.  It consisted of so many silent returns to bed that I lost count.  I became so frustrated and so fatigued between carrying my 2 year old night-wanderer back to bed and nursing my 8 week old that I could hardly see straight. 

As my bedroom door cracked open and the pitter-patter of two pajama feet came in, snuggie in hand, I pulled off my comfy, warm covers, silently and without eye contact, picked her up and returned her to her resting place.  Over and over and over.

I could feel my tension rise.  The tiredness wore on my nerves.  I wanted to yell.  I wanted to sleep.  At one point Adley woke up to eat and as I was feeding her in her room I saw Elyse wandering to my room (Matt was out of town.....again).  I left Adley, meal half complete, to take Elyse back to her bed......again.

These tired days will be short lived.  How I respond could last a lifetime.  I will not yell.  Before I put her to bed each night we pray about her obedience.  We pray for her to remember her sleep rules.  The common denominator....we pray.  I don't know if I'm doing anything right, but we pray.  Sometimes, some situations, that's all I can do.   

Bee-utiful, bee-having babies!

Our bee-utiful girls on Halloween!  We trick-or-treated for the first time with Elyse this year and for the first time in our new neighborhood.  Elyse was perfectly content with her first lollipop but enjoyed all of the decorations, costumes, and the caravan of neighbors we paraded the streets with.  It was a great time and another reason I'm so thankful we ended up in such a great community!

After pictures :)