Thomas Dean {2 Months Old & Surgery Update}

We've made it halfway through our first big hurdle in this Bilateral Congenital Cataracts journey! Thursday night I didn't sleep a wink in anticipation for Thomas' surgery on Friday morning. As I laid awake holding my sleeping baby I re-read all of the encouraging comments you all left on my blog posts and Instagram. Have I mentioned how thankful I am for you all? 

 

 In preparation for surgery we were instructed to administer 3 types of eye drops every few hours starting on Thursday. The doctor warned us that they would burn Thomas' eyes but he didn't cry at all or swat our hands away. He's been such a champ through all of this. On the morning of his procedure he was not allowed to have any formula for at least eight hours before surgery. However, he could have breast milk up to four hours before. Lucky for me, I have quite a few really close girlfriends who still breastfeed so I didn't have any problem getting some liquid gold for Thomas. He was pretty pumped too and took a big feeding before we headed to daycare to drop off Caroline.

We arrived to the hospital extra early and that is when I started to get more nervous. After getting through the extensive check-in process we were finally escorted to a surgery prep room where we changed Thomas into his hospital gown and met with his team of doctors. They were all so wonderful and made us feel like they would take care of Thomas as if he was their own. We were over an hour past Thomas' usual feeding time but he didn't get upset at all. That boy. So great.

My two biggest fears/worries for surgery day were 1. the nurses inserting the IV and 2. watching Thomas get rolled away from me on a stretcher. I still have nightmares about seeing Caroline's car seat strapped to a stretcher and it's an image I will forever wish I could un-see. I am happy to report that neither of those things happened (in front of me) thankfully. I was extremely relieved when the anesthesiologist informed us that Thomas would get his IV after he was already asleep. And when it was time to take him back to surgery several sweet nurses were politely arguing over who would get to carry him back. It made me feel good to know they all were so excited to get their hands on him. They brought a warm blanket to wrap him in and CARRIED Thomas away from us after we gave him tons of kisses and prayed over him. This was still the hardest part of the day and we both sobbed.

Matt's parents were waiting for us in the surgery waiting area. It was such a relief to see them. For over an hour it was hard to hold a normal conversation as we all pretended not to stare at the TV monitor displaying status updates on Thomas. I tried to distract myself by reading all of the comments written by my sweet readers again and it really helped get me through those 90 minutes. I bet you all didn't realize how such a simple act of writing me a sentence would get me through some of the hardest moments of my life.

Finally, Dr. G arrived to the waiting area with the biggest smile. He couldn't even wait to take us back to a private room before he exclaimed "The surgery could not have gone better!!! No complications at all and Thomas was absolutely perfect. I expect the left eye to go just as smooth. The nurses are so in love with him. Not supposed to do this buuuut I couldn't help but take this picture for y'all before we started!" We smiled and passed around the picture of Thomas smiling right before they put him to sleep. Just one more reason we are so in love with our team of doctors!

What a relief. We made it through one of the hardest parts. About 30 minutes later we were notified that Matt and I were cleared to visit Thomas in recovery. As we approached his room we thought we were disrupting a nurse meeting because there were so many ladies huddled around him ohhh-ing and ahhh-ing.

Against Dr. G's outpatient orders, the anesthesiologist adhered to hospital policy and informed us that even though Thomas came down from anesthesia beautifully he wanted us to stay for the next 10 hours for observation. So off to the pediatric wing we went and stayed until about midnight. It was the longest day but we could not be more thankful for such a smooth surgery and perfect little patient. Praise Jesus! 

Throughout the weekend Dr. G asked us to keep him informed if we had any concerns at all. He called us several times to check on our little man and we sent him pictures periodically of his eye progress. We are administering four types of eye drops several times a day and Thomas has to wear a patch over his eye so he (and Caroline) doesn't touch it.

Right eye healing; Left eye with cataract.

Today we have a check up with our doctor duo to make sure things still look good and discuss the second surgery!

On to the more fun two month stuff...

Thomas at two months old -- taken on the morning just before his two month appointment.

Two Month Highlights:

• 10 lbs, 5 oz (11%); 22" long (8%)
• Eating 4 ounces of Earths Best Formula every 3 hours during the day. Taking last bottle at 8 pm and sleeping in pack & play until anywhere between 3 am - 7 am.
• Size 1 diapers and 3 months clothing
• Started daycare and is thriving! Loves his teachers. There are only two babies in class so he gets spoiled.
• SMILING! SMILING! SMILING! :)
• Rolling from belly to back and doesn't mind tummy time at all!
• Still on the fence on hair color but lots of people think it's red. 
• Cataract surgery on right eye complete!

Two month favorites: Activity Gym / Infant Gowns / JJ Cole Agility Carrier / Snuza Baby Movement Monitor / Mustela PhysiObebe No Rinse Cleanser / Dohm Sound Machine / Microwave Steamer Sterilizer / Wubanub / Boppy Lounger / Sheet Savers / Aden & Anais Swaddle Blankets / Summer Infant SwaddleMe Swaddles

 

Thomas & Caroline at 2 Months!

An Update on Thomas

Wow. I don't even know how to adequately thank you all for the love, support, encouragement and prayers you've sent our way. Through my post yesterday I met so many brave mamas, received tons of doctor recommendations, connected with others who are also on this same journey and felt an overwhelming peace from the prayers. I wish I could respond to each and every comment but the truth is when we aren't at the doctors office I spend most of my time snuggling my little man in one arm while researching or updating our family with the other. I'm so thankful this blog allows me to reach so many of my friends at once too so I can spend that time focusing on Thomas.

Although we're facing a pretty significant long term challenge, I can't help but think about all of the mothers who have and will sit in the same exact chair during a well visit in my pediatricians office and receive much worse news than cataracts. My perspective has definitely changed quite a bit and I haven't stopped praising God for Thomas' overall health. This could have been worse. Much worse. 

So an update since I last popped in...

I awoke yesterday in a blissful mood before the reality of the day before hit me all over again. We had spent much of the night researching bilateral congenital cataracts and tried to envision what this new normal will be like. After digesting all of the overwhelming information we had received, I felt a tug at my heart to get a second opinion before our surgery this Friday. Without a doubt, this tug was a direct result from the prayers you all have been praying.

We have received lots of recommendations for the best pediatric ophthalmologists around the country but unfortunately don't have the luxury of shopping around and taking our time finding the perfect doctor. In fact, I have been struggling with the speed at which we had to make this huge decision and have to trust that God is in control here. As I mentioned in my first post, with each day that passes that Thomas is blind, his brain shuts down the development for his vision and our chances of visual restoration plummets significantly. So we knew we had to stay local to expedite this. That being said, there are only three doctors in Charlotte who specialize in pediatric cataracts. I decided to post to a local, private mommy Facebook group requesting any information I could get about these doctors and received over a dozen recommendations for one specific doctor that happens to be within walking distance to my house.

On Tuesday, at 7:56 a.m. I considered being that crazy mom standing outside the office with no appointment but refrained and instead took the slightly less crazy approach of calling the office over and over again until they opened. I was so thankful when they took my call right at 8 am, recognized my panic and urgency of our situation and agreed to squeeze us in that day in between patients to meet with "Dr. D" and his partner "Dr. G" who happened to be in the office that day too.

From the moment we arrived it just felt right. The staff, the nurses and both doctors were so sweet and comforting and made us feel like family. Dr. D agreed with our first doctor that Thomas has bilateral congenital cataracts and requires emergency surgery. He also did an ultrasound on his eyes to assure us that the issue is confined to the lens and the rest of the eye is healthy. No cancer, infection or retina detachment. From there, the information we received was a bit different from what we'd been told the day before. With over 20 years of this specific surgery experience he began to tell us that he believes Thomas will regain a good amount of his sight back over time with the help of the surgery, follow up surgeries, contacts, glasses and eventually a permanent intraocular lens implant. He quoted us a 10% risk of complications such as glaucoma which was a huge difference from the 40% risk we'd previously been told. When we asked if Thomas would live a "normal life" the doctor laughed and honestly thought we were kidding. His response was "OF COURSE! Why wouldn't he?! He won't be a fighter jet pilot but he can do anything he wants!" I hugged him. 

It was no question that we should go with Dr. D and his partner. They whisked us over to the scheduling office and set us up for surgery this Friday at 11:45 am for his right eye and another one two weeks later for his left eye.

Overall we are feeling very positive and optimistic. We believe that God is in control and is bigger than cataracts. He is the ultimate Healer. So I am fervently praying for peace, patience, wisdom and exactness for our doctors during surgery and complete restoration for Thomas' eyes. And heck, I'm even praying for Thomas' golf game. No prayer is too small, right?

Thank you again to all of you who have joined this journey with us and are praying alongside of us. We are so lucky and blessed by all of you. And if you don't mind, please schedule us in for prayer this Friday at 11:45 am! 

PRAYERS FOR THOMAS

On Monday morning we had our two month checkup for Thomas. Coffee in hand, we arrived 5 minutes early in hopes for a quick visit so we could hit up Marshalls before the next feeding. Within a few minutes we were whisked back to the exam room, interrogated with all the routine questions, measurements were recorded (10.5 lbs, 22 inches long) and we patiently awaited our pediatrician. This visit was going down as the quickest checkup yet. Our doctor arrived and asked us if we had any questions or concerns. We didn't. So he got started on his quick physical exam.

During the routine eye exam we commented on how Thomas has "pretty" white pupils - very unique! Upon closer look, our doctor agreed and spent a few extra minutes examining them with his penlight. He gave a confused hum and asked us if we had any concerns about Thomas' vision. We said no but noted that Thomas doesn't make long periods of eye contact and is mostly interested in lights. We equated that to him being so little still. The doctor then made up a bogus excuse about his lens being a little dirty and promptly exited the exam room to get "his backup lens." We started to panic. A few seconds later he reentered the room with an exam tool that was about eight times scarier looking than the original one. He said he couldn't find his backup lens so he just grabbed this one. That's when Matt and I realized something was definitely up. He turned the lights on and off, on and off, on and off. We sat in complete silence. I began to shake. At the conclusion of his extended exam the doctor announced he wanted to err on the side of caution and have an ophthalmologist give a second opinion. He speculated the white pupil could be an indicator of a variety of very serious things from cataracts to eye cancer. Cancer?! Cancer?!! We politely refused to leave until the first available referral appointment had been confirmed...1 p.m. across town.

During the car ride home I had such an intense panic attack through sobs of tears that Matt had to pull over and help me breathe. The next few hours were a blur. We sat on our couch and prayed over Thomas.

At 1 p.m. we arrived at the Eye, Ear, Nose & Throat (EENT) doctor and tried to be patient as the nurse recorded all of our basic information. Once we were finally brought back to the exam room the doctor gave Thomas some drops to dilate his eyes. They burned and he screamed. Fifteen minutes later it was time to evaluate Thomas and it took a team effort to hold his eyes open for the doctor. Over high pitched screams she diagnosed him with cataracts in each eye and told us it was a very serious condition that needed immediate medical attention - surgery. She also informed us that she only had the capabilities to examine the front of his eye and wasn't able to give us a progress report on the overall health of his eye and whether or not there were any cancer signs. Given the severity of the diagnosis, she immediately sent us back across town to another EENT for an ultrasound and second opinion by a doctor who specializes in pediatric cataracts. 

This was turning out to be the longest, worse, scariest, most exhausting day ever. I kept wondering if this was actually real life or if I would wake up from this terrible nightmare to my perfectly healthy baby. 

After a lengthy wait we were finally called back and given another eye exam by the ophthalmologist. Right away he agreed Thomas has congenital cataracts in both eyes. Upon further review, the doctor also informed us that his eyes otherwise look healthy and there was no concern of cancer - HUGE SIGH OF RELIEF. But it turns out that cataracts isn't much better news. 

Over the next hour we peppered the doctor with questions and learned:

-  A congenital cataract is a clouding of the lens of the eye that is present at birth.

- They are super serious and extremely rare. Only about .4 percent of infants are born with a cataract in one eye...and here we are, congenital cataracts in BOTH eyes. The cause is unknown. 

- Thomas has the most severe case of cataracts which requires immediate surgery to ensure that his vision is clear enough to allow normal development of his vision system. So the longer we wait, the less likely his vision will be restored after surgery. 

- We are working to schedule the surgeries for this week or next. Each eye has to be done separately, about 7-10 days apart.

- After surgery Thomas will have to wear baby contacts. Apparently this will be a huge hurdle for us to safely insert and remove these. We will also have to administer eye drops several times a day. Once he is older he can switch to bifocal glasses. Then eventually, at a much later age he may be eligible to have a permanent lens implanted behind his eye.

- With the surgery comes a 40% risk of glaucoma due to the high eye pressure and lots of other secondary risks. 

- As of right now we do not know how much Thomas can see. We believe he can see bright lights and shadows. After the surgery we still won't know how much he'll be able to see. It won't be until he can read an eye chart that we'll have more information. 

- For the next seven years Thomas will have to be closely monitored and treated by an ophthalmologist with monthly visits. His vision may increase or decrease with time but we just don't know.

So that's where we are at. Our doctor recommended we join a support group to learn more about this disability we're facing and talk with other families with children who have cataracts. We know Thomas will have lots of challenges ahead and many obstacles to overcome. The doctor says "he has a shot at a good life" but won't be able to play certain sports like golf, will constantly be at risk for severe side affects from surgery at a young age, may not be able to drive and more.

We are still taking it all in and are trying to stay positive. Please pray for Thomas. Please. And check your baby's eyes!