On Monday, Maelyn had her initial cleft lip/cleft palate team appointments at Toronto Sick Kids Hospital. I expected the day to be important, knowing that it was the first step in a long journey to repair Maelyn clefts. What I didn’t expect was the way in which the hospital visit would give me a new appreciation for the health of my child and my family.
Let me backtrack a little to say that the hospital itself is very, very impressive. For those families that need stay at the hospital for extended periods of time, the hospital does it best to provide for their needs – restaurants, shops, and even entertainment for the kids. Paul took advantage of the Starbucks and got himself a coffee and it was during this time that I started noticing things that I hadn’t noticed while we were rushing around. Parents were with their kids, many of them obviously going through serious medical treatments. I literally felt the breath leave my body. It was like entering into another world – one where parents are fighting daily for the lives of their children. How fortunate we are that Maelyn’s medical needs, although serious in their own way, are not life-threatening.
For us, the day was quite overwhelming and tiring. We were nervous about how Maelyn would handle it, but we shouldn’t have worried. Maelyn was a trooper throughout the entire day.
We packed what we needed and gathered our paperwork the evening before our appointments, as we knew it would be a very early morning. Rather than waking Maelyn up even earlier than necessary, we left her in her pyjamas and brought her right to the car. Our hope was that she would sleep a little more on the way there, but that didn’t happen. She woke up and was ready for breakfast – luckily we packed enough food to feed a small army and that helped to keep her very happy!
Once we arrived, we headed to our first appointment, which was with the dentist. He looked at Maelyn’s teeth and confirmed that she is missing only one tooth, along with part of her gum. The tooth and gum will be replaced with a prosthetic piece when she is older and luckily, she is being placed in a program that will help to cover some of her upcoming dental costs. Maelyn, of course, absolutely lost her mind when the dentist was looking in her mouth, but the nurse took care of that quickly! She had a handful of sticker pages for Maelyn – luckily she is totally obsessed with stickers at the moment and quickly forgot about the trauma of the dentist peering in her mouth. J
Our next appointment was with the plastic surgeon. We waited….and waited…and waited for our appointment. Maelyn entertained herself by looking at books and waving at all the kids in the waiting room with us – too cute! When we were finally called into the consultation room, we met with quite a few people. The coordinator of the cleft lip/cleft palate team had us fill out more paperwork and outlined for us many of the procedures and future hospital visits we will be booking. The doctor took a look at her palate, lip, and nose – then explained the surgery in detail.
We thought for sure that they used a skin and/or bone graft to fix the palate, but that isn’t the case. The muscles that help make up the palate are still in her mouth – they are just in the wrong place. They will take the muscle pieces needed and bring them across her palate, covering her palate and ensuring that no air escapes through the nose. During the same surgery, the doctor will attempt to repair her left nostril, trying to open it up and make it easier for her to breath. He will also look at further repair of the scar on her lip. If the surgery takes longer than expected, however, then these things will be taken care of at a later date.
A nutritionist then came into the room to explain to us that we need to get Maelyn drinking out of a modified sippy cup as soon as possible. She needs to be off bottles of any kind before the surgery. If she were to use a bottle, she could do damage to her repaired palate. Our palates are hard, but Maelyn’s palate will always be soft and can therefore be easily damaged. We were also told to continue to allow her to eat on demand in order to help her gain weight before the surgery.
Our next visit was with a social worker. She took our background information and then told us that she will be checking in with us throughout the surgery to ensure that all is going well and answer any questions we may have. We will also be working with her in the future, participating in support-type groups for children with cleft lips/cleft palates. This will be most important as she enters the pre-teen/teen years.
At this point it was past lunch time and nap time – which meant that Maelyn was starting to melt a little and we were also feeling the effects of a very long morning. We rushed to grab some food before our next appointment, but ended up having to bring our lunch with us to the waiting room. On a side note, we ran into a teacher I work with at the hospital, but we had to run because we were late for our appointment – but it was nice to see Heather, even if it was a very quick visit!
Maelyn had her hearing tested with the audiologist and they determined that she has some hearing loss. They explained to us that many children with cleft lip/cleft palate suffer from recurring ear infections and fluid in the ear, leading to some hearing loss. They tested her ears and determined that there is quite a bit of fluid in her ears – which means that she will have tubes put in her ears when she has surgery. We are crossing our fingers that one set of tubes will take care of the problem, but the doctors prepared us for the fact that the surgery often needs to be repeated – and if that doesn’t work, we may need to consider getting her hearing aids. That decision is far in the future, however, so for now we are praying for a good result with the first set of tubes.
Doing the chicken dance in the audiologist's office...
Maelyn will be in the hospital for three nights, unless any complications arise. The first night she will be in an observation room, in a tented crib. If all goes well, we will then be moved to a private room. Once home, Maelyn will be required to eat very soft foods only – which I am dreading a little, as she hates anything mushy. What I am dreading the most, however, are the arm restraints she will be required to wear for THREE WEEKS!! The restraints make it so that Maelyn will not be able to bend her elbows, ensuring that she won’t be able to put her fingers in her mouth.
Once Maelyn has recovered from surgery, she will begin intensive speech therapy. With a closed palate, Maelyn should be able to start creating the sounds necessary for speech. Only time will tell how ‘normal’ her speech will be – but again, we will take this one step at a time.
We know that Maelyn will receive the best care possible from a very caring staff at SKH. We are grateful that the surgery will help Maelyn reach her full potential and we are very excited for the day when she is able to produce speech and make herself understood – what a gift it truly is to be able to communicate. We know that Maelyn has a lot say and this Mama cannot wait to hear every last word of it!
On the way home -- she fell asleep before we even left the parking garage...
