Emma's eye surgery (strabismus- esotropia)

 If you've been reading my blog for a while, you know my daughter has crossed eyes, also called strabismus. There are many forms of strabismus, Emma has esotropia. That means her eyes point inwards. Her story is somewhat special but not uncommon. So for anyone curious to know her story from her diagnosis to her surgery, you are welcomed to read.

  

Emma was born with crossed eyes. Her first pediatrician failed to diagnose her. A nurse mentioned that she wasn't sure it was normal for Emma’s eyes to be so crossed. She explained that newborns do cross their eyes when trying to focus but that it usually isn't so apparent and that it should go away before 6 months (Emma was 5 months then). We were still not too worried but we started to get concerned.

At her second appointment with her pediatrician, Emma was still not diagnosed with crossed eyes. He told us everything looked fine (except for her having an umbilical hernia- which is our last worry). Her eyes were becoming more and more crossed. We wanted a second opinion but we trusted our pediatrician, after all, he IS a doctor and he has been dealing with children for a long time.

Emma developed a fever while we were in Montreal (big city compared to where we live) and we brought her to see Noah’s old pediatrician. He took a glance at Emma and said “never mind the fever, what’s with her eyes? How long has she been crossed eyed for? What are you doing about it?” Uh, excuse me? My daughter has what?? It was the first time that a professional said it. Emma had crossed eyes. She has been crossed eyed since birth.

When the pediatrician heard that she was born this way he got very concerned. He started making calls and asked me when I was going back home. I said I was planning on leaving the next day. He replied “you’re not leaving until we know what is going on with your daughter’s eyes. Montreal is the place to be right now.” Now, as a parent, that scared the crap out of me. I understood how serious it was… He got us an emergency appointment for the very next day at the Children’s. Then came the blame… the doctor asked me “how did this go unnoticed?” well uh… Our first pediatrician said it was fine… “And, you didn't see anything wrong with her eyes?” well… yes but the doctor said it was fine!  He gave me an upset look and simply said “look, I don’t want to blame anyone. I just want her to be okay and right now, I don’t know if she’s okay.” We left the office and my heart was crushed. I felt cheated, I felt like I failed to protect Emma… On top of that, Stephen wasn't in town. I had to tell him all that by phone and he was pretty upset.

The next day we went to the hospital at 11 am. We waited a long time… when we finally saw the doctor she made Emma pass a bunch of tests and asked me how old she was. By then Emma was almost 8 months. She shook her head and said “it’s too bad that we didn't catch it earlier.” She then explained to me that she would most likely need surgery for her crossed eyes but that the real problem was that because we waited so long Emma developed a lazy eye.  That means that her brain was starting to erase her right eye (the lazy one) and only use her left one. She prescribed glasses and told us to come back in 6 weeks.

We went glasses shopping that very same day and found a pair that was just big enough for her little small chubby face. They took 2 weeks to arrive.

We then had her second exam. Her vision had a slight change but nearly enough. She started patching 12 hours a day for 7 days. Patching meant that Emma had to wear a patch on her good eye to force her lazy eye to see. We had to patch for 2 weeks and come back. At this point, the kids and I started to just live in Montreal while Stephen traveled back and forth. Emma was also put in the surgery waiting list at that point. She wasn't ready for surgery but since the waiting list was about 1 year long, the doctor projected that her eyes should be ready for surgery then.

After two weeks of intense patching, Emma was doing much better.  She could actually follow objects from her right eye (which she refused to do before) and she was using it a bit more. We reduced patching hours so that she didn't lose sight in her left eye. She was down to 6 hours a day for 7 days. We also decided to get her new glasses because she was starting to take off her cute red ones. We got her a pair with elastics in the back and much bigger lenses (so she couldn't peak!) Best decision we took glasses wise.

We also told the doctor that we really liked them and everything but that we couldn't travel back and forth with the kids anymore. We had to come down every 2-8 weeks and honestly it felt like Stephen and I were never together anymore. Plus, the 5 hour travel to come down and the 5 hours to go back up were terrible with an 8 month old and a 19 month old. So the doctor at the Children’s referred us to a doctor we had in our little town. It was a huge mistake…

After our first incident with a failed diagnosis we were very much careful with what doctors told us. We weren't hesitant at all in asking for a second opinion. The new doctor is probably very experienced with adults and older children but he didn't know what he was doing with an infant. In the first appointment he had with her he reduced the patching to 4 hours a day for 5 days. Which sounded decent but in his second appointment he simply told us that she was ready for surgery and that patching was no longer necessary. That rang a bell. When I called the Children’s hospital to ask for a second opinion, the ophthalmologist begged me not to stop, that we’d be losing all the work we've been doing in her eyes. So, we went back to being followed at the Children’s.

At the end of February we got THE call. Emma had room to be operated at the beginning of march. The appointment wasn't too long. They took measurements and had her have a physical basic test. They gave us the instructions for surgery and we were good to go.

When we arrived at the hospital (at about 8 am) we were asked to change Emma and go back to the waiting room. Stephen had to change her because I was a wreck. Then she got called to be weighted and measured. At about 8h30 we were asked to go to the 10^th floor for her surgery.

When we were at the 10^th floor, we met with the nurses and Emma’s doctor who explained to us the surgery and that they would operate on both eyes to loosen two muscles (one per eye). She asked if we had any questions (which we did not- I think) and then she left. The anesthetist also came and spoke to us explaining to us how they’d administer anesthesia and the side effects it could have… We signed (well Stephen signed, I couldn't do much really- I was a wreck) and we waited for the nurses to come back. Around 9h10 the nurses came to get her from the waiting room. This was the hardest moment, to let her go. We couldn't bring her into the operating room, so we had to give our daughter to total strangers and trust that they’d take care of her and fix her eyes. Daddy handed her over and we looked at each other… We were speechless. We asked the secretary where we should wait and she said to go back to the second floor, that there was a big waiting room and that they would contact us through a phone to tell us that Emma was done with surgery and that we could come back up.

Stephen and I sat in the waiting room… I asked Stephen to get me a coffee… I hadn't eaten that morning. I started texting family and friends and everyone was a great source of support. They had told us that the operation was going to last 1 hour and a half from beginning to end. The first hour went by fast. The phone rang to let another mom know her toddler was out of surgery. Then, time went by very slowly… It had been an hour and a half… Then minutes felt like hours… I think I went to the bathroom at least 5 times just to make time go by faster. Almost two hours… No news… At the point where Stephen was starting to freak out (because I started freaking out the second it had been an hour and a half) the phone rang. The receptionist said “You must be Emma’s mom.” My heart was racing, all I said was “ya” She told us to come up, that Emma was out of surgery. We went up, the elevators couldn't go fast enough. When we got there, we had to wait for a nurse to come get us in another waiting room… more waiting. When we were finally allowed in, we got to see Emma quickly but couldn't touch her or stay with her because she was sleeping and it’s always better for patients to wake up on their own. After about 30 minutes, Emma woke up. She was screaming and unhappy, I was holding her and the nurse gave her another shot of morphine. She fell asleep in my arms again.

She stayed asleep for at least an hour and a half. Nurses encouraged us to try and wake her up and get her to drink something. They also said that if she was still in pain, they’d give her another dose of morphine but that she’d have to stay another 45 minutes. So, I did what any nursing mom knows how to do to wake her baby up, I pulled my breast out. It was an almost instant reaction; she smelled, got to my nipple and started sucking. Awesome… Halfway through her feeding she looked at us… She had so much trouble opening her eyes. The doctors said it would feel like sand paper inside her eyes when she’d wake up. Just thinking about how she felt made me want to cry. As soon as she woke up and started playing the nurses told us to go ahead get her changed that we could bring her home. The nurses also gave us some pink sun glasses because her eyes would be sensitive to light. She rocked them!

We drove home, she fell asleep in the car again and then Stephen had to leave. He had to go back to work the next day. I was honestly terrified of letting him go. I didn't want to be alone if something went wrong (like Emma getting an infection, not feeling well). I just wanted him there. Distance was really hard that time around. Emma’s uncle gave us a huge teddy bear (named Barry White) that Stephen brought up in the car with him.

Emma had a fast recovery (thank god). By the evening she was playing like nothing had happened. You can tell by the play doh containers in her feet and the necklaces she put around her neck. Her eyes didn't seem to cause any discomfort. The week was uneventful and Emma didn't react at all to the operation.

A week later we had to go back to the doctor to see how Emma was doing. We were happy to find out that she can now see better without glasses than with glasses. Also, to give her a chance to be binocular she will not be using patches anymore. So, as of right now, Emma is not wearing any glasses or patches!!!! It’s great news… She still has a big preference for her left eye BUT she can now hold a fixation with her right eye (which she could never do before). We can say that this surgery was successful and so far so good… Emma has another appointment in three weeks and we’ll see how her case evolves.

Emma’s surgery was a huge challenge we (as a family) had to go through… It really wasn't easy and it put a lot of stress on everyone. We are happy it is done… We cannot wait to see the end results and we are so thankful for all the doctors, ophthalmologists, nurses and staff that took care of our little Emma. We will never thank you enough.