Wednesday, October 21, 2015

Thomas Dean {3 Months & Contacts Update}

What a big month we've had with our littlest man! On October 6, Thomas had his left eye cataract removal surgery and it could not have gone smoother. We've been getting better each day administering the eye drops too and hoped this would be an indicator of our comfort level with contacts.

We were allowed to send one personal item back into surgery with Thomas, so all week long I slept with his Hope the Hippo lovey from the sweet girls at Bella Tunno. It made us feel better knowing he had something that reminded him of us during such a scary procedure.
A week later we had our first follow up visit where we received fantastic news -- Thomas would receive his first set of contacts in a week (much earlier than we had anticipated)! We were ELATED over the idea of Thomas being able to see for the first time! That week couldn't pass quick enough...

Fast forward to what we thought would be the very best day of our lives -- CONTACT DAY! We opted for the first appointment of the day and anxiously arrived early. Prior to the appointment we both charged up our phones and made tons of room for videos! We couldn't sleep the night before either. I made a list of all the places I wanted to show Thomas after his appointment which included a walk around the neighborhood, daycare to SEE his sister right away and more!

The appointment turned out to be nothing like we had expected. First, it took over an hour to even get the contacts into Thomas' eyes (and this was a contact specialist doing it!!!!). With each failed attempt my anxiety about putting these in myself was skyrocketing. Over and over again he'd squeeze his eye shut, shake his head or blink. It was extremely frustrating. But the worst part was once the contacts were actually in...the moment we had all been waiting for...was devastating. Thomas looked completely confused and uncomfortable. He showed us no signs of seeing anything and Matt and I were completely rocked. We asked the doctor what we could expect Thomas to see with his new contacts and he explained to us that the contacts were just beginning to signal to his brain to start turning on his vision. Like a very old, slow computer, it would take quite awhile for his brain to tell his eyes to see. WHAT?! Why didn't anyone tell us that? The contact lady must have thought we were absolutely nuts filming Thomas getting his contacts in. Needless to say, we were pretty frustrated, heartbroken and I was angry!!!!! So how long until his eyes would "turn on?!" was our next question which was answered with an even more vague response..."We don't know -- weeks, months, years or never. Until he turns 3 years old and can read an eye chart we have no way of measuring his eye sight."

A few minutes later we were sent back to the waiting area until they were ready to have us back for the exam portion of our appointment. Fifteen steps later we were impatiently sitting in the waiting room when I looked down and noticed one of the contacts had already fallen out. I ran back to the contact room and immediately informed the lady that we lost one and needed a new one. It was then that she told us that she did not have a backup pair (SERIOUSLY?!?!) and that we'd need to search the floor to find it. More than 75% of the staff got on their hands and knees to search the carpet, look through my clothes, Thomas' clothes, Matt's clothes, exam rooms and places we didn't even go. It was gone. Just like that we lost our very first contact. And don't worry, they still made sure to bill us the $200 for the lost contact. I refused to leave without a replacement contact so the contact lady found a random temporary contact to try. And since it was a random backup contact it does not fit AT ALL and slides all around his eye and gets stuck under his eye lid most of the time...which means one eye is not getting enough contact attention right now.  Our next set to try doesn't arrive until Friday. Why we can't try on 435439546 at once is a question I still don't understand the answer to.

So what does this contact journey look like from here? Well, terrible to be honest! The doctor explained to us that from here on out we will need to come in WEEKLY to try a new set of contacts. Each week he will refine the measurements (curvature, diameter, prescription, etc.) and order a new set in hopes that it will fit a bit better until it's perfect. If that doesn't sound complicated enough, he also told us that infant eyes grow exceptionally fast so he'll likely outgrow his contact every 3 weeks anyway even if they nail the fit right away.

Soooo, I am not okay with this! Not in the slightest. My surgery is just a few days away now and I feel extremely uncomfortable with Thomas' contact situation.

But there's a huge blessing out of all of this! Always got to find the blessing, right?! As soon as we found out about Thomas' cataracts diagnosis I posted to a local Charlotte mom group asking for pediatric ophthalmologist recommendations and was connected immediately with another (and probably ONLY) mom in Charlotte going through this same infant cataract surgery and contact journey! Crazy, right? God sure knows how to place people in my life during the right times! She has a 7 month old boy and has been an absolute blessing. We text all the time, she lets me vent my frustrations, answers my lists of questions, checks in on us often and gives us advice!

After I told her about our contact appointment she quickly put me in touch with an amazing pediatric optometrist at Duke, which is just a few hours away! This doctor books up months in advance so the first available appointment we could get for Thomas was January 6. However, this sweet Charlotte mommy reached out to the doctor directly and explained our situation. Within a few hours we got a call back from the doctor informing us that she can see us on November 10!!!!!!! Praise the Lord! So just a few weeks after surgery Matt and I will be taking Thomas on a day trip to Duke to hopefully get fitted correctly for a set of contacts by an experienced pediatric optometrist who actually specializes in infant contacts! Hooray! 

On to other fun three month stuff...
Three Month Highlights:
  • 12 lbs, maybe more!
  • Eating 6 ounces of Earths Best Formula every 3 hours during the day. Taking last bottle at 8 pm and sleeping in pack & play through the night! We kicked Caroline out of our room to sleep in her crib around one month old but I think Thomas will stay with us until he goes to college.
  • Using up the last of the size 1 diapers 
  • 3 months clothing fitting snug
  • Having the hardest time pooping!
  • Sitting in the bumbo seat more often.
  • Working on the flat spot on the back of the head with more sitting exercises and using the Noggin Nest 
  • Is the snottiest baby of all time. We have to use the snotsucker and saline daily. 
  • Baptized!
  • Smiles all the time! And getting close to giggling.
  • Cataract surgery on left eye complete!
  • Received first pair of contacts! 
  • Appointment scheduled at Duke for November 10! 
Photobucket

Facebooktwitterpinterestinstagrambloglovin

34 comments:

  1. I know that had to be so frustrating and disappointing. Praise God for people willing to reach out and share their own journey, and for that appointment becoming available.

    ReplyDelete
  2. If I may, I have a couple of curious questions. I thought you were going to a pediatric specialist? And why can't Thomas wear glasses? I will keep praying for you and your family on all of your journies. I'm so glad you have a Mommy friend to go through this with. Take a deep breathe and rememebr those blessings ;)

    ReplyDelete
  3. If I may, I have a couple of curious questions. I thought you were going to a pediatric specialist? And why can't Thomas wear glasses? I will keep praying for you and your family on all of your journies. I'm so glad you have a Mommy friend to go through this with. Take a deep breathe and rememebr those blessings ;)

    ReplyDelete
    Replies
    1. Oh girl, we had these saaaaame questions! So, yes Thomas' eye doctor is a GREAT pediatric ophthalmologist and is super knowledgeable on overall eye care. However, apparently opthalmologists don't really specialize in contacts so they send you to the "contact lady" who usually works alongside them. Sooooo, we've decided to go see a pediatric optometrist who specializes in infant contacts in addition to the contact lady (who is really just guessing sizes each week) to see if we can move this process along quicker!

      As for the glasses - that is the goal!!!!! Unfortunately, since Thomas is only 3 months glasses are an ineffective tool to restore/repair eye sight (especially near sight). Plus the glasses will slip all over his face at this age and we can't risk the glasses not being squarely over his pupils. SO, we have to wait about a year or so until he's (hopefully) gained vision and then we can add glasses on top of contacts. We are also going to get him a set of glasses that don't have a prescription to wear over his contacts for now to help reduce the amount of lost contacts. The contact specialist said the glasses will sometimes catch the contacts if they fall out.

      Thank you for the encouragement!!! xo

      Delete
    2. Wanted to let you know something for the future when it's time for glasses. Make sure you're talking to the right people. There are glasses for babies now that are made to fit like swimming goggles. They look a little funny, but there's no worry of them slipping off and breaking or poking him in the eye. Do a little research on those when it comes time:)
      Prayers being sent your way!

      Delete
  4. Aw he is so perfect Christina! I'm so sorry the contact situation is so complicated, thank heavens you found a good doctor and someone else going through the same thing!! Thomas is so lucky to have you and I'm sure you will all get used to the contacts in no time!

    ReplyDelete
  5. I'm so sorry that this experience didn't go as smoothly as planned (and that you weren't informed up front of what to expect or not expect). I am so thankful that you have this other mom in your life who can help you, and also reached out herself to the doctors. November 10 is much better than Jan 6! Keeping your family in my thoughts and prayers!

    ReplyDelete
  6. lord have mercy... no backup contacts?!?!?!?! boo hiss mama... i cannot even fathom your frustration. sending big hugs and loads of prayers your way!!! stay strong my friend... you are AMAZING and i am thrilled that you've got some good things coming from this and a new friend to confide in, too!

    ReplyDelete
  7. I'm so sorry to hear y'all had a setback with Thomas - things seemed to be going so well! So glad you were able to find a silver lining and are able to get up to Duke SOON! Thomas is as adorable as ever and he looks so big in the pictures! Definitely looks like a boy version of Caroline ;) Praying for you, friend!

    ReplyDelete
  8. I was JUST thinking about you this morning and wondering how things are going. UGH how frustrating!!!!!! I feel so thankful that you are so on top of things and reached out and now have a mom friend to help guide and support your family. She sounds amazing and I'm thrilled about your Duke appointment!! Sending so many prayers and love your way. Hang in there momma, you're doing such an amazing job! xo

    ReplyDelete
  9. Oh my goodness. You are so much more patient than I probably would have been. I'm so glad you have found someone who is going through something similar though! SO SO SO glad. I didn't know your eyes grew/changed that much... I apparently know so little about eyes after reading all of this!!

    ReplyDelete
  10. So sorry to hear your contact situation! You are a great mommy to both kids! Keep optimistic and remember "this too shall pass". That always helps me anyway!

    ReplyDelete
  11. You are so incredibly brave and string sweet friend, and you are allowed to have all these frustrations. I am so sorry about this long and unpredictable process - praying for you all and for the doctors that work on little Thomas and his gorgeous eyes x

    ReplyDelete
  12. I recently had a family member at Duke. The Duke eye center is in an absolutely new building at the right of the hospital It has its own parking lot. All very convenient. Hope the contact debacle will get better. Babies are smart so he will figure it out and realize it is a apart of his daily routine. I had to learn years ago to give our dog insulin shots. I was mortified because I don't like needles. Our vet met me at his office before he opened and worked with me until I felt comfortable administering the shot. It is a matter of touch and getting a feel for what you do. You will find the same thing with the contacts Once you get you got it. I wear contacts with no problem. Once Thomas gets the right pair he won't even know they are on his eyes. I am keeping you and Thomas in my prayers. I live in Danville, Va. Tons of young Danvillians live in Charlotte. Hope you get to meet one of them one day. I will continue to keep you in my prayers!

    ReplyDelete
  13. I would be so nervous! I have to say as frustrating as this all must be, I am in such awe of how you can find the silver linings in all of it. I can't wait to read how your next appt is! xo

    ReplyDelete
  14. Oh it sounds like you're gone through so much! Thomas is lucky to have a persistent Mama like you who will do anything for him <3

    Lauren :)
    ohheyilikethat.blogspot.com

    ReplyDelete
  15. Oh, shut. I was just in tears of frustration reading this- so so so thankful for you to have that other mom who is going through the same thing! Isn't it such a blessing to have someone to guide you, and understand your experience. I am also soon thankful about the doctor at Duke- so nice to have some of the best doctors in the world so nearby.

    Also, I have been meaning to email you about your surgery. Thank you so much for sharing all of that- I can't help thinking of women who are reading it, considering doing the same thing, and the possible lives you are saving by being so open and inspiring others. xoxoxoxo

    ReplyDelete
  16. and that was *shug, not shut. Apparently autocorrect doesn't understand Southern.

    ReplyDelete
  17. I hate that the contacts were such a fail. But I'm sure you guys will get it all worked out for little Thomas. I remember the first time I put a contact in my own eye and it felt so awful, but eventually you get used to it and since he is so small, hopefully he will get used to it super fast! :) Sending prayers your way!

    ReplyDelete
  18. Christina- I want to give you a big, fat virtual hug. Seriously girl, yall go through some stuff! I can't fathom the stress of dealing with all this while planning ahead to your own surgery. Thoughts and prayers girlfriend to you, so many of them! Thomas is such a doll- and he looks so much bigger than baby Caroline! Precious boy!

    ReplyDelete
  19. My dad had eye surgery at Duke & they are the best. Can't say enough good things about their eye center. Good luck with everything coming up!

    ReplyDelete
  20. Bless you for staying so positive through all of this. That has to be the most frustrating thing!

    I know it's not the same thing, but I've worn contacts for a long time and only recently found an amazing eye doctor and let me tell you it makes ALL the difference! They were educating me on things that I had never heard of before and I couldn't figure out why that was the first time I had heard them after wearing contacts since I was 14.

    I hope that will be the case for Thomas!

    ReplyDelete
  21. Ugh that is SO frustrating! I'm so glad you found a doctor up at my neck of the woods that will take you sooner than you thought! Let us know how it goes and if you need any recommendations for what to do up here!

    ReplyDelete
  22. I'm in tears for you. I can't even imagine experiencing what you did. Going through all of this with false expectations... I'm so so sorry. But I am so glad you were connected with someone who can truly identify and even better, put you in touch with a specialist. God intervention at its best. Am still thinking of you and praying for you. God is in control and He is using you through this trial. He has to be. :)

    ReplyDelete
  23. Thomas is just the most precious and beautiful baby! Prayers for your family!!

    ReplyDelete
  24. I'm so glad you met another mom going through the same situation. You are being so strong. Sending warm thoughts your way

    ReplyDelete
  25. I have been reading for a long time and just SO admire your strength, faith, and positivity. Even though we've never met, I've said a prayer for your sweet family every night. I hope that these current trials are countered with enough happiness and good news to last a lifetime. I'm sure they will be. XO

    ReplyDelete
  26. I'm so glad you were able to connect with someone on MIC! That is so awesome! Continuing to pray for you all...but glad you are getting some resolutions!!

    ReplyDelete
  27. Goodness I was upset for you just reading this about the no back-up contacts! I can only imagine how you & Matt were feeling!! What a blessing your new friend is & how awesome that she was able to make a call & get y'all in 2 months sooner!!! Praise Jesus!!!

    ReplyDelete
  28. His appointment sounds incredibly frustrating! It sounds like things are looking up though. What a blessing to have found someone close by with whom you can relate!

    ReplyDelete
  29. I hope these words are encouraging, since I've followed your blog for years.

    I taught a very intelligent and promising young man for two years in Charlotte, and it sounds like Thomas is going through very similar things to the obstacles that he overcame (let's call him Adam). By the time I met Adam as a junior, he'd already had the surgery to implant lenses (is that right?) after years of contacts and other surgeries. Before this, Adam had been considered legally blind, though he did have some sight, and he used accommodations at school. This did not slow him down! As I said, he's a highly intelligent young man and active, as well. From what I learned through meetings and talking to him and his parents (who are such lovely people, you might even have already met them), his teenage surgery was extremely successful in restoring his sight. While Adam still had accommodations like standard-sized or larger print, the use of e-readers, and seating requirements, by the time he was in my classroom, he was just like any other student with less than perfect vision (and I can relate!). He was one of my best students and graduated at the top of his class just last spring.

    As stressful and frustrating as this is right now, there is plenty of hope for the future. And keep in mind that Thomas is going through this 18 years after Adam, so it might be a lot better overall. It seems like your baby is in the best hands possible.

    ReplyDelete
  30. Wow! How frustrating. Honestly, I don't know how you're keeping it together with so much going on. Praying!

    ReplyDelete
  31. Oh my goodness gracious, I am so sorry to hear about your experience! You are absolutely right though, people are placed in our lives for a special reason! Xo, Stephanie

    ReplyDelete

Blogging tips