Sawyer went in for surgery Friday the 19th at 1:35, yes I looked at the clock when I got the message that she was taken back, and they told them in 70 minutes she would be all finished (yes, I also set a timer for 70 minutes). This aunt was pretty worried. Luckily, we were not busy at work and I prayed through the anxiety. Prayed that He would be there with her, hold her hand, be there with the surgeon and medical staff, and to be with her brave, strong, amazing parents. I couldn't even imagine how they felt. Roughly 70+ minutes later I got a message from my brother saying she was out of surgery and they had gotten a report that she had done great and that the surgery had been a success. Praise God! After an hour or so we got a few pictures of her and it just broke my heart to see her like that. I knew she wasn't in pain and that in a few days the swelling and stitches would virtually disappear, but she's just so small and I just wanted to hold and kiss her. Samantha sent an update to us all and said the nurse had told them that in all the years she had worked, Sawyer was the first baby to ever wake up from anesthesia and not cry - we all knew she was pretty special from day 1, but other people are now seeing how amazing she is too.
Now a week or so later, she looks AMAZING. She has been sleeping through the night, which I'm sure she needed and her parent's greatly appreciate also. Mom is up there with them until today and said she is the same personality wise, just even more happy! Said she will look around the room and just smile and giggle. Sweet Sawyer, we are pretty darn happy to have you around too.
I never knew how much my heart could love until she came around (sorry Ben - different kind of love apparently!). She has brought so much joy to all of us, we now don't know what we ever did without her. God couldn't have blessed Clay and Samantha with a better, more adorable baby. She is so strong already and will just continue to grow and prosper into a very strong woman.
We love you, Sawyer Rose.
From the Mother's View:
Hi all! My sister-in-law Amanda asked me to guest blog for her regarding Clay and I's experience with Sawyer's condition. Let me give you some backstory...
January 7, 2016:
I took Sawyer for a checkup. She was 6 weeks old. The appointment was fairly uneventful, until it wasn't. She was a healthy weight and height and the doctor had no major concerns. But then it was the end of the appointment and he asked if I had any questions or concerns for him. From Day 1 in the hospital after she was born, Clay and I (and family) noticed that Sawyer did not open her eyes. We were told repeatedly not to worry, "She's just a newborn. They like to sleep." But finally at this 6-week appointment, Sawyer was awake. I told the doctor that this was as wide as she could open her eyes. That's when he finally took notice. In his defense -- all prior appointments she truly was asleep. We were blessed with an amazing sleeper! He showed instant concern and told us we needed to see a pediatric ophthalmologist at Children's Hospital in Denver immediately. He used words like, "Not tracking. Not sure if she sees. Could need surgery. Major concern." The rest of the appointment was a blur. I left the appointment in shock. It wasn't until I got Sawyer's carseat in the car and called Clay that I broke down. My innocent child. All I could think was, "Is my child blind?" I just went home and held my sweet baby and cried. The next morning I called Children's and got an appointment set with Dr. Enzenauer for the following Monday. That weekend would feel like the longest weekend ever. I spent the majority of it analyzing Sawyer's every move. Was she tracking me? Can she see? Fortunately, Clay's family was up that weekend so that helped keep my mind distracted.
January 11, 2016:
Clay and I drove to Denver for Sawyer's appointment at Children's. We talked the whole way about the "what ifs". We arrived at our appointment an hour early, because we were so anxious. Let me say this - the people at Children's left a positive impression on me from the start. Instead of making us wait the hour for our appointment, they immediately got us in and started the intake process in the eye department. After going through the initial process with the eye technician, we were able to meet Dr. Enzenauer. Within in a few moments, he began to throw out words like "ptosis" and "blepharophimosis". But he also brought us great relief with the words, "She can see just fine." He then got into what he suspected Sawyer to have -- BPES. Blepharophimosis Ptosis Epicanthus Inversus Syndrome. He said the first concern was to address the severe Ptosis -- essentially Sawyer was not born with a functioning eyelid muscle (levator). What little she could open her eyes, was due to her using her forehead muscles. Sawyer needed surgery for that. Insert terrified mother here. Surgery? On my baby? But she's too little! He then went on to explain that with the BPES, she would need to have the surgery multiple times throughout her youth and teenage years, that she would never develop the muscle.
We left that appointment feeling two things: Grateful and Scared. Grateful because she can see. Grateful because she is still OUR Sawyer. Grateful because she is so healthy otherwise. But Scared. Scared because she is going to need surgery. Scared because of the uncertainty of the future. Scared because of BPES - what is that really?? We did a lot of Googling, which made us even more scared. There are two types of BPES. Type 1 is found in women only. It effects the ovaries. Essentially, the women with BPES, Type 1, go into early menopause (we have seen as early as age 18). Type 2 is found in both men and women and only effects the eyes. Essentially - she has smaller eyes, the severe ptosis, and she has an extra fold of skin in the inner corners of her eyes which prevents her eyes from opening as wide as they should be able to. All can be mostly corrected with surgery.
We received a call from Children's that Sweet Sawyer would have her surgery on Friday, February 19. In the next few weeks I felt a lot of things. I felt angry. I felt sad. I felt like this wasn't fair. In my multiple Google searches, I found that there was a Facebook group for people with BPES and for parents of kids with BPES. This group is why my feelings of anger and sadness have mostly disappeared. I found that Sawyer is going to be just fine. I now feel thankful. I feel lucky to get to be Sawyer's mother. This group was welcoming and comforting. I found parents going through the same thing that Clay and I were. It made us feel less alone. I also feel like this experience aided in my walk with God. I've strayed a bit over the past few years. But through this process, I've started to make time for the Word and prayer every day.
February 19, 2016:
It was the day of surgery. Clay's parents had come to Holyoke on Wednesday night, so they were riding with us to Denver. We woke up early in the morning to make it on time to our 10:30am check-in at Children's in Denver. We showed up to Children's early. As we waited to be checked-in, my parents also arrived. It was very comforting to have both sets of grandparents there with us. While waiting, we saw children of all ages with all different types of illnesses and disabilities. I felt lucky. I am fortunate that Sawyer's concerns were so minor compared to these children.
After being checked in, we were sent up to the surgical wing. Until this point, I felt pretty relaxed. It felt like "just another day." We were welcomed in the surgical wing. Wow - their system is amazing. We were greeted by the front desk immediately. Clay, Sawyer, and I were taken back for pre-op. She was changed into a surgical gown, weighed, and looked over. Sawyer did great through all of this. She started to get fussy during this process but nothing a pacifier couldn't fix (for a bit). She actually fell asleep and slept through her thorough look-over by the nurse practitioner. We met with the surgeon, anesthesiologist, and surgical nurse. All were very reassuring that our baby would be just fine. But then it was time. The nurse came to get Sawyer. This was the moment that Sawyer started to get fussy. It had been 4 hours since she last ate and she was starting to remember how hungry she was (she doesn't like missing meals). Clay and I said our goodbyes to her and the nurse took her from me. I was okay. We were okay. But as the nurse was walking down the hall with Sawyer looking over his shoulder, she started bawling. This is when I wasn't okay. My heart was walking down the hall away from me. It was so hard to see. She was so sad. I'm her mother. I should be comforting her. I think Clay had these same thoughts going through his head as well.
We went out to the waiting room to be with our parents. To help pass the time, we went down to the food court and grabbed lunch. I was starting to be okay again. We went back up to the waiting area. Children's had this big TV with tracking numbers and surgery status. I found Sawyer's tracking number and saw that she was still in surgery. About 15 minutes later, the surgeon came and found us. He said she did great and that we would get to see her soon. He did mention that due to the extra fold of skin in the inner corner, her eyes weren't as wide as he would have liked (that will be corrected when she is 5) but he was still pleased with the results. I can't really describe how I was feeling after he walked away. Excited to see and hold my baby again. Nervous because I wasn't sure how Sawyer was going to react with her eyes suddenly open. To go from so much darkness to so much light -- I just thought of what a shock that might be to her.
The recovery nurse came and found us to take us to where the post-op nurse was trying to wake Sawyer up out of anesthesia. Seeing my precious baby for the first time after surgery was hard. She was already pretty swollen. But yet it still felt like seeing her for the first time after giving birth. I was so thankful that she did so well during surgery. The anesthesia nurse kept telling us how relaxed Sawyer was and that it was the first time she has seen a baby not cry coming out of anesthesia. Our little girl is so brave! After Sawyer woke up a little more, we went to the going home room, where Clay's parents, then my parents were able to come see Sawyer. We fed Sawyer and the nurse did a couple checks on her then said we were ready to go home! Well, home as in the hotel as we had an appointment with Dr. Enzenauer the next morning.
Before and after surgery. Such a happy girl!
Sawyer was still fairly groggy the rest of the night. But we got a glimpse at her beautiful eyes and smile for a few minutes that evening. She slept the whole night. The next morning she woke up and was absolutely full of smiles looking at her dad and I. Wow. A moment I never want to forget. That was the first time (of many) that I decided this was all worth it and that our baby was going to be okay. Her appointment with Dr. Enzenauer was pretty uneventful. So much so, that Sawyer fell right asleep! We went back to the hotel, packed up, and headed home!
In the past week, we have seen our daughter's personality shine. She wakes up all smiles, but still loves her sleep (just like her momma). She has started to reach for and grab items in front of her. She has started to giggle. And she has most importantly, completely stolen her daddy and I's hearts. We love you, Sweet Sawyer Rose.
