Our latest appointment with Lucille at Sick Kids involved her having her nose stent installed onto her plate. The first appointment was at 12 o'clock where they simply took out her plate. Dr. Caro said that Lucille probably wouldn't be happy today as most babies tend to struggle with the in and out process of getting the stent fitted to their nose. The fitting portion of the appointment wouldn't be until 2:00 in the afternoon, so we had a window of time to take up. We had lunch with our dear friend Katye! We had a lovely visit. It was the perfect way to pass the time while Lucille slept in the stroller. (until Daddy woke her up so Katye could hold her)
The installation of Lucille's plate was a bit of a task as they have to put the plate in and out as they adjust the metal wire to fit into her nostril properly. With each readjustment, Lucille became more and more frustrated and boy did she let everyone know it. The Dr's eventually got it just right. Before they allow you to leave the hospital they want to make sure that the child can feed properly with the stent. Lucille quite simply didn't want to feed. This was really hard on both Esther and I as it brought us back to her first trip to Sick Kids when Lucille had her plate installed for the first time and really struggled to eat before we left the hospital. It turned out that she was just really tired and wasn't ready to eat. So we left the hospital with her asleep in her stroller. She remained sleeping for the whole drive and upon arriving home she had two solid feeds in two hours.
Esther and I recently made it a goal to learn more about Lucille's Dr.'s and how they came to be a member of the Cleft Lip and Palate team at Sick Kids. Dr Bi is an orthodontist that came from Australia and is actually on a one-year placement at Sick Kids because she wanted the experience with cleft lip and palate. We asked why she came all the way to Toronto and said it was because Sick Kids is renowned around the world as being the place to come for cleft lip and palate. Esther and I loved hearing this. It made us that much happier to have chosen SK as the place of care for our child. While we are sad that Dr. Bi will be leaving in July, we were happy when she asked that we send her updates via e-mail after she has left.
Dr. Caro is originally from Colombia. She was actually born with the exact cleft lip and palate diagnosis that Lucille has. She came to Canada on a similar program to what Dr. Bi is doing but she decided to stay in Canada. She had to go back to school to get her Canadian education for orthodontics before she could practice. Aside from having the diagnosis herself, she says that a reason she went into the field is that she loves being with the kids and their families.
Dr. Steve (whom we met today) has been at Sick Kids for six years and will handle Lucille's bone grafting (if she requires it) around the age of five. He decided that he wanted to get more interactions/exposure to the kids when they were younger, so he started working with babies as well which we think is pretty awesome.
One of my concerns when we first found out that we were going to have a child with cleft lip and palate was the judgement of others due to how different she would look when she had tape that covered her face and lips for the first 5 to 6 months of her life. I got over this the second she was born as I simply no longer cared. To be honest, sometimes the hardest part for me is seeing her in the tape. My favourite times are when we change her tape and I see her smile/face the way that I did when she was born- with no tape covering it up. Adding another piece to the mouth plate made me nervous that it would hide her that much more. I quickly realised that it was such a minor addition and didn't really matter.
The greatest part of this latest addition is that is allows us to see a little bit more of what our daughter's face will become once she has her surgery. Our daughter actually has a little button nose now that is propped up by this little metal piece.
Lucille is slowly adjusting to her new apparatus. She has already managed to pull it out of her nose twice but it's quite simply a matter of Esther or I just popping it back into her nostril. Her first night with the stent was a fussy one, but we are hopeful that things will improve as she becomes used to the stent.
On we go...
Love to all,
B.
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