Surgery the 2nd.

 Apologies for taking so long to get this up on the blog. Life has been beyond insane. Without further ado......... 

     On Friday, November 18th Lucille had her second surgery to repair her cleft palate. For those of you that want to know what is actually done during the surgery, here is a video that we found helpful. http://craniofacialbvis.wixsite.com/home

We left Waterloo at 5 o’clock in the morning as we had to sign in to the hospital at 7 a.m. We ended up making it to Toronto in an hour and twenty minutes so we had plenty of time to spare. Lucille was in great spirits in spite of having a cold and cough. She didn't sleep well the night before due to her cough and perhaps sensing that today was a day of significance. The last three weeks have been trying for our family. Lucille had a GI infection that she battled for almost two weeks. She was sick over her birthday and lost weight which was so incredibly difficult for us to see. We were so concerned that her surgery would be cancelled. She rebounded from this just in time to get a head cold from her brother...we spent the whole week thinking that it was likely that we would be sent home after her assessment by the nurse because she was too sick for surgery. Luckily, the nurse and staff felt that she was good to go!

   Handing your daughter off to someone for surgery is never easy. Before the surgery, Esther was feeling much more nervous than I was. Which, to be honest, is not usually the case. I was comforted knowing that Lucille's lip repair went so well and I think I was feeling like finally we were reaching a major milestone in this journey. Esther, on the other hand, was remembering how it felt to see our baby girl in her arm restraints and drugged up post-surgery. She was also worried that Lucille's surgery would be cancelled because of her cold. We were both also not looking forward to waiting from 7am - 9am in the pre-surgical room with a one year old who hadn't eaten since 4:30am.
But, as usual, our girl surprised us. She was happy and social right up to the moment when the nurse took her to surgery. It's such a odd feeling seeing the nurse carrying your baby away, knowing that the next time you see them, they will be different. November 18th was an incredibly beautiful day. It was sunny and 23 degrees! Esther and I decided that we would go on a breakfast date and a stroll through the Eaton Centre.
The palate surgery was a longer procedure than her lip repair. It took Dr. Fischer and his team three hours to complete the surgery. During the surgery, Lucille also had tubes placed in her ears. It's very common for cleft babies to have fluid in their ears so we were anticipating this happening at the same time as her palate repair. Lucille hadn't had any fluid in her ears up until that point. The Dr's think that it may have settled there during one of her recent illnesses. We were finally able to see Lucille about 50 minutes after the surgery was completed. She was beyond drugged up at this point and the nurse was amazed that she was still awake. She refused to go to sleep even in her drug induced state. 

Once we got up to the Observation Room in 8C, she was able to take some sugar water which was a great sign. It was very clear that she needed to sleep but it took a good amount of soothing from both of us AND the nurse to get her to sleep. Her stubbornness is a trait that unquestionably comes from her mother. ; )
   

  
 






Our afternoon was spent sitting beside Lucille as she slept--checking into the hotel (where I spent the night as only one parent was allowed in the room) – and getting her to try and take fluids when she wasn’t sleeping. The palate repair causes more pain than the lip surgery does as it involves bone, because of this she was on a steady dose of Morphine which is tres strong and therefore REALLY helps with sleeping. I left the hospital around 8:30 Friday night as Lucille was out cold and Esther and I were bagged as well. Lucille was up once in the night and slept til shortly after 7:00 am which meant that Esther was able to get some sleep in the recliner beside her as well.  Lucille continued to show signs of an excellent recovery throughout the day. By the time her surgeon visited at the end of his shift, he said he would be comfortable sending her home the next day as long as she continued to improve. This was a big surprise to us. We were mentally prepared that we'd be in the hospital for at least 2 nights, given what we had been told by the doctors and nurses, and the intrusive nature of the operation.

The next morning I came to the hospital and let Esther go back to the hotel so she could rest and have some time away from the room. Once Lucille woke up from her morning nap,  she and I went to the playroom that is on the floor where she was staying. On our way there we ran into a young man who had also just had surgery.  We had a wonderful conversation with this 10 year old boy and his mother.  He was born with cleft lip and palate and had just had his bone graft done. It was so great to see him doing so well at his age. I know that Lucille will never remember the interaction that we had with that boy and his mother, but it’s something that was very special to me and something that I won’t soon forget.

    Upon our arrival back to our room I tried to feed Lucille some pureed food. She devoured an entire container of applesauce which is something that the nurses wanted to see before they felt comfortable letting us go home. We were discharged around 3 o’clock in the afternoon and made our way home to Waterloo. Before we left the hospital we put on the new sleeves that we ordered online. As you can see they are far less restrictive and bulky than the ones the hospital provides. She tolerated them much better than the other set. See comparison below : )

  



 It has been over three weeks since Lucille's surgery and she has been on a steady diet of pureed food so that no damage is done to the palate repair. Giving her medicine was a challenge for the first week. We actually had to hold her down while the other one injected the medicine into her mouth for her to swallow. Thankfully, she has become far better at taking her medicine and no longer fights us.
 
We are once again so very grateful the amazing staff at Sick Kids hospital. We are also thankful to each and every one of you for your love and support throughout this process. We really do appreciate all the positive vibes, love, prayers, texts, BBMs, and e-mails that you all sent. We have a follow up in Toronto in 3 weeks and should have an update worth sharing at that point.


Love,

B & E