The Start Of Our Journey

Lets start at the beginning of our journey… A day filled with so much joy and happiness. I could not have asked for a better labor and delivery. Everything went smoothly and Scott joined us, perfect and handsome! Everything was great. As this was our second child we were old hats at the new baby stuff and ready to head home within the first 24 hours after delivery. I felt amazing for justgoing through labor and giving birth!

IMG_7658The nurses hurried and got everything set up for us to check out. The last 2 things on our list were the visit from the pediatrician and the hearing check. Little did we know that the happy, relaxing time was about over.

First scott didn’t pass the hearing tests! After multiple tests and tries they told us that it may be something or he may just need a couple weeks to drain excess fluids out of his ears. This scared us but we pushed it into the back of our minds and tried to keep happy faces on.

As the pediatrician walked in and started checking scott out. We found out something to was wrong right away. As he shined the light into scott’s perfect little blue eyes he said something was up. My heart sank! What does that mean? He said we needed to set up an appointment with our regular pediatrician right away. So after being discharged we went home scared and confused. No one would tell us what it could even be.

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The next day we took scott into the doctor and had him checked out again. She confirmed our fears that Scott didn’t have a red reflux when you shine the light into his eye. She looked worried and said she would set up an appointment with a specialist right away. I was wondering what it could be that would need to be done right away. Was my baby blind? What was going on? Our appointment was set for 2 days latter. This is when everything started to blur together!

We packed up and drove the 2 and a half hours to my parents house. They lived close to the pediatric ophthalmologist. The night before the appointment I broke out in uncontrollable shaking and fevers. We got up and went to the doctors. My husband had to go home for his law school finals so I went to the appointment with my mom. By this point I thought I have mastitis and I am sweating buckets but I go anyways. Wanting to know what was wrong. I couldn’t wait any longer.

At the appointment the Dr. was so kind, understanding and helpful. She was exactly what I needed. She looked quickly and said something was off and then put drops in his eyes to dilate them. When she looked into the back of the eye she said that it was a cataract. Wait, what? I thought those were things that old people got in there eyes! She told me it was directly in the center of his eye. It was blocking all light from entering. He could not see out of it! I was told this didn’t happen very often.

As I was told about surgery, patches, glasses and more I started crying. At this point I was sweating and feeling awful. I was told my perfect little baby would have to go in for surgery and at 4 weeks old. I was scared, worried and crying. I couldn’t handle it. My mom started crying. The doctor was amazing, she helped so much. Made me feel better. After she found out I was feeling really sick, she even called over to the ER for me and got me a spot. She sent me over there after we went in for an ultrasound on Scotts eye.  I was told they would call with a surgery date. I called my husband, it was so hard to tell him everything the doctor had said.

At the ER I thought I would just get some antibiotics and be sent home. Turns out I was wrong. I got admitted and proceeded to have every test imaginable! The whole time crying and I’m pretty sure I was freaking out the nurses. 😉 After days of not knowing what was wrong with me, over 50 pokes and blood draws, crying every 10 minutes, being told I was more emotional than I should be, and given a series of blood thinning shots into by belly i was sent home 5 days later. Turns out I had infected blood clots in my pelvis. Yet another rare thing. I think this was the lowest week of my life. Sitting in a hospital bed with too much time on my hands and thinking about my son going in for surgery! Worrying what if I did something during my pregnancy to cause this. Of course I’m going to be emotional people!

After that week things got better. We went home packed up our whole house and moved closer to the PO and my husbands internship he was doing that summer. We realized how blessed we were to have gotten THAT internship out of all the ones we applied for. This was closest to the doctor where we would be a LOT!

SURGERY
We moved in with my parents and 2 weeks later we were preparing for surgery. Our doctor hooked us up with another family in the area dealing with cataracts also. This was such a blessing! She was sooooooooo helpful. Told me everything I needed to do and how it would be. We prepared ourselves and gave scott a blessing. She told me it was okay to cry! Probably the best thing i could have been told.

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I was most nervous about the hours and hours we weren’t allowed to feed scott before surgery. (My kids eat every hour on the hour till they are a couple months old. ) But we were blessed yet again. Scott fussed once and then continued to sleep and he was such a strong little man. The hardest part was handing him over to the doctor and walking back to the waiting room!
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The surgery went great! Surprisingly we felt pretty calm. The doctor came out and said everything went great! My husband and I sat in with scott while he woke up. We watched movies on our laptop trying to pass the time. We had to sit and wait 4 hours before they let us go home. He nursed once. We were sent home with bottles of eye drops and told to pick up some more. I mean crazy amounts of eye drops!

At home scott was fussy and had forgot how to nurse and wouldn’t take a bottle. I was so grateful for my family and their help.  The next day we went back in and had a follow up. He was looking good. He would have to wear the shield on his eye for a month. I remember thinking how horrible that was. But he soon became our adorable little cyborg baby. He was such a strong baby. The worst part was ripping the shield off to put drops in his eye every couple hours. I felt so bad when we started patching his good eye and his having to wear the shield on the other.

THE FOLLOW UP

Scott continued to wear the shield for protection, especially during tummy time. We were so glad when we got to put that thing away. Yay. No more weird looks and questions. Ha! That was just the beginning, but the worst was over.

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We went back in once a week for a long time. I don’t even remember how long it was. We checked pressure, and the contact and how his vision was. I Never thought I would be putting a contact into my baby. I didn’t even know there was such a thing! Sooner than we thought we were off of all the the crazy drops! YAY! Every day I worry he will develop glaucoma. (a side effect from the surgery) but so far so good.

We learned to look at the world through Scotts eyes, and how babies see the world.

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At a couple months old. Dr. Rerey moved to a new office. To say the least we were sooooooo sad. We miss her so much. Really I don’t think we could have started out this journey without her and her great attitude.

We miss her and the new doctor has a lot to live up to. No one could replace her!

Every day is a work in progress. My kids are 16 months apart and I constantly worry that my little girl is going to poke out my sons eye! She notices that Scott gets a lot of attention for his eye. She ties to make up for that and get her own attention. To say the least its been crazy in our house!

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PATCHING
Scott quickly became our little pirate very!
We patch 6 hours a day. Or more like half the day, every day! Thats a whole lot of patching! Okay, lets be realistic, we are not perfect. We do our BEST and I figure that is enough. Some days patching just doesn’t happen. Especially when scott is sick. No one wants an EXTRA grumpy pirate around!

We have tied to make patching fun. I mean patching is a huge part of our life! We have made countless patches. Some that worked, some that have been horrible failures! We figured out how to customizes sticky patches for special occasions. We’ve done Oregon duck football patches, glasses patches and custom pirate patches along with others. It makes patching so much easier for us.

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 This was our favorite patch when scott was younger.
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We even made scott a pirate for halloween!
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We never were fans of the skin colored patches. I feel like he has no eye, and little kids at the grocery store point and ask their parents why the baby has no eye! Eeekkk….
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Now we mostly use the sticky patches. Scott doesn’t pull them off like the non-sticky ones! The sticky patches don’t bother his skin anymore either.
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THE CONTACTS
Oh the contacts! The contacts are an interesting part of life. Never in my life did I imagine I would be putting a contact into a babies eye! Scott started wearing contacts at about 5 weeks old. He wears silsoft lenses. (half soft half hard contacts) They need taken out and cleaned at least once a month.

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I have to be honest, we clean it a lot more than once a month, but not because we want to. Scott is pretty good at rubbing out his contact! We have spent countless hours crawling around on the floor at church, friends homes and digging through his bed looking for lost contacts.

It becomes second nature to look and check if the contact is still in his eye. Surprisingly we notice pretty quickly if its missing. We find the lost contacts a lot more than I thought we would. I believe its because of all the prayers we say! The contacts are crazy expensive! Luckily our insurance has covered them so far.

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I feel like I’m getting the hang of putting the contact into Scotts eye! I can get it into his eye in less than a minute if I have someone to help. I am so proud of myself! It used to take hours! We found the best time to do it was when he was sound asleep. It would normally wake him up but he would fight less. Scott has never been a good sleeper and i blame it on all the late nights we poked and prodded him. Now at 9 months old. He is too smart and too strong to do it while he sleeps. He still is a bad sleeper!

Truthfully, taking it out is another story! I’m still working on this and hopefully I’ll get faster. It still takes me awhile. But it makes me feel better that even our doctor has a hard time taking out scott’s contact! Scott is a fighter! He also knows when its coming now.

He wears a +26 power contact! I had no idea contacts could go up to that power, I wear a -11!

We have noticed his cataract eye is smaller and I’m just hopping this wont make a difference when he is older.

GLASSES

Over the week of christmas, Scott rubbed out his contact 4 times! No fun! Especially since we were visiting family. In a room of 19 grandkids and 12 plus adults, a million christmas presents and all the raping paper we were able to find his lost contact. Im telling you we are getting help from heavenly father here! Its a miracle.
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After not finding a couple contacts in a row and many tears we were told glasses might help. We immediately went out and ordered some. He wears the glasses over his contact and does pretty well with keeping them on. They are miraflex brand! (amazing!) I was so worried about him wearing glasses and now that he does I feel like they are part of him. They are so cute on him too! Its hardest to keep the glasses on him when he is tired.
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He has only lost his contact once since he got glasses, this was also partly my fault because he was being a pain with them that day and I was tired of it and needed a break. So i took the glasses off and an hour later we were looking for a contact. Darn. Lesson learned. I really believe they have helped.

9 MONTHS OLD
Our little pirate is now 9 months old, almost 10 months! He is a happy, wonderful, perfect, AMAZING little boy. With so much spirit and personality. We love him so much. He giggles like no other kid I know!

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We have learned so much through this experience and are learning new things every day. He does everything the same, except fall a little more often maybe. But that comes with learning to walk. I can’t imagine learning to walk with my eye patched and not have any depth of field! Brave boy!

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At his last appointment the doctor told us he couldn’t be doing any better! We are doing great! I’ve got to say, that sure sounded good to hear and made the tears and struggles worth it! My boy can see out of both eyes now! What a miracle that is!

 

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4 responses to “The Start Of Our Journey

  1. Dear Jessica and family… I am an old friend of your mother and noticed a post on Facebook. I just want to tell you that Scott is ADORABLE and you and your husband are doing a wonderful job under all the pressure of discovering this problem as soon as he was born. Your faith in God and His mercies will get you through anything and everything in your life. You are blessed to have such wonderful parents who have shown you the way. I will be praying for you and your family. I know you will have a wonderful life walking in His way. Love, Sister Charlotte Cline

  2. I just want to say Thank you for this blog my son who is 3 months now was born with bilateral cataracts (both eyes) are stories are so similar. I felt for a long time that I was by myself in this matter so thank you for sharing your experience

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