Palate Surgery - Saturday

Early on Saturday morning the nurse and I began our regime with Maelyn. We changed her diaper and pyjamas and tried to clean up her nose and mouth. The nurse then asked me to try feeding Maelyn -- soft foods only, of course. I felt terrible trying to put food in her mouth, but she willingly ate the yogourt that was offered to her. When we tried to get her to drink, however, she would have nothing to do with it at all.

Maelyn was fussy and miserable -- who could blame her? Nothing seemed to make her happy. She noticed the highchair in the room and kept pointing at it...so we put her in there and she seemed to be more content. At this point Paul arrived at the hospital and he was able to hold Maelyn for the first time since her operation. They cuddled for awhile and she seemed to settle in his arms.

Maelyn was eating her second yogourt when Auntie Kara and Uncle Cam arrived at the hospital for a visit. Maelyn was eager to cuddle with Kara and even managed to eat a few more yogourts -- seven in all that day!

Then Grandma showed up and brought with her some pyjamas for Maelyn. With her IV in her hand, none of the pyjamas I had would fit over her arm. Leave it to my mom to have pyjama tops of every size! After we changed Maelyn the nurse moved us to a private room. It was much quieter and I was looking forward to having some privacy. Kara and Cam headed home at this point and then Grandma, Paul and I took Maelyn for a stroll around the hospital floor to help distract her from her discomfort.

Maelyn loves heights and enjoyed the view from the eighth floor!

That morning the nurse showed us how to care for the stent in Maelyn's nose, put drops in her ears and give her the medication that she will need over the next few weeks. Maelyn was not happy about any of the demonstrations. The medication, however, did help her to feel sleepy and she had a nap. With Grandma there, Paul and I took advantage of the available babysitter and left the hospital in search for some lunch. We had a quick lunch at an authentic Chinese restaurant and then headed back to the hospital.

After lunch and her nap, Grandma headed home and Auntie Kara and Uncle Cam returned to the hospital. It was nice to have others there to help us entertain our little girl. Despite more pain medication, Maelyn stayed awake and even started to play with some toys that we brought to the hospital with us. We eventually ventured out to the playroom and Maelyn loved the new toys she found there.

Paul's handiwork on the board in Maelyn's room...

 

Enjoying some time in the playroom...

Enjoying the view...

After our visitors left, we tried putting Maelyn to bed -- but she wanted nothing to do with it! Paul was able to catch up on some sleep while I tried to entertain Maelyn. I couldn't believe that she had the energy that she did -- was this the same child we could barely get to stay awake or move around that morning?! Even looking at the pictures from the day, I am amazed at the difference twelve hours can make. I took Maelyn back to the playroom and then we went for a long walk all around the hospital. I had to try and keep up with her -- I was running after her with her IV pole. Finally, at about 1am, she gave in and went to sleep. Exhaustion set in and I was able to get a few hours of sleep.

Palate Surgery - Friday

We were elated to learn that Maelyn's surgery would be at 9am, rather than at 1pm on Friday. We knew that it would be easier on her - and on us - if she wouldn't have to go so many hours without eating.

Paul and I were ready to go at 5:15 in the morning -- bags in the car, car warming up, caffeine in hand. We gently got Maelyn out of her crib and brought her to the car. The hope was that she would continue to sleep, but that plan didn't work. Instead, she said a cheery hello to Paul and started dancing in her car seat, wanting the radio turned on! We were on our way and she immediately began asking for food. Luckily, we had brought with us a few new toys and they served as the perfect distractions. The Aqua Doodle occupied her for hours this weekend!

Once we arrived at Sick Kids we signed in and then went to the second floor to prep Maelyn for surgery. We waited for our turn in the playroom and Maelyn loved the toys and the kids that were there. A nurse then took Maelyn's vitals, changed her into her hospital clothes and then she took us to another area where the doctors would come and speak to us before the surgery started.

Sick Kids is an amazing place -- they were so prepared! When we got to the area where she would go into and then recover from her surgery, they had toys ready for her on the bed. This completely distracted her and although she continued to ask for food, it was easy enough to keep her occupied.

I was adamant that I was going to take her into the operating room. I felt quite strongly about the importance of not handing her over to strangers and having them walk away from us -- she has already experienced this too often in her life. I spoke with the doctors and they agreed -- so I suited up and then pushed her in her stroller into the OR.

When we walked into the room, Maelyn's brows furrowed and she didn't want me to take her blanket off her lap -- she kept tapping her leg, asking me to put it back on. I picked her up, with her blanket, and lay her down on the table. She was very brave, not crying once. The nurse put the heart rate monitor on her toe and she found the red light that shone through her toe to be pretty funny -- even giggling a little. Once they put on the gas mask, I just kept looking in her furrowed eyes, until she feel asleep. I must admit, I got a little teary as I was looking at her -- my heart was squeezing.

Then, the waiting began. The surgery started at nine in the morning and we were told that the surgery would last just over four hours. Luckily, Paul and I are the type to over plan and we were prepared for the hours of waiting. The waiting room itself was very comfortable and the volunteers were very kind. We got ourselves some breakfast, where we ran into someone we had met at an AdopTalk seminar recently. We watched a movie on Paul's laptop, read the paper, worked on Sudoku puzzles -- and the time kept passing. Maelyn's surgery, in the end, was over six hours long.

During the wait, Paul and I both commented that this was the longest we had sat still since Maelyn became a part of our family!

We first heard from the ENT doctor and she reported that they had cleaned out Maelyn's ears and removed the fluid. They were then able to put in the tubes and told us that everything else looked normal. Shortly thereafter we heard from the plastic surgeon. He told us that Maelyn's palate was fixed, but that the muscles were shorter than he expected, leaving Maelyn with a tight palate. This wasn't the perfect news we were hoping for, but we are crossing our fingers that it holds and in the end, doesn't have too many consequences for her speech quality. He also told us that they were able to repair most of her nose and the issue with her left nostril.

Breathing a sigh of relief, we were finally able to see our little girl. She was tented in her crib, to help with her breathing and to provide moisture for her mouth and nose. Seeing her for the first time after surgery, both Paul and I shed a few tears. She looked so frail and helpless. She was covered in her favourite purple blanket and was lying on her stomach, to help with the drainage from her wounds. Maelyn's entire body, but especially her face, was quite swollen. We saw that she had a stent in her nose and that both her nose and her mouth were very bloody. It was hard to see her that way, but fascinating to see the change in the look of her nose.

Maelyn was assigned her own nurse in order to help monitor her breathing very closely. After four hours in recovery, Maelyn was taken up to the constant care unit. This is an area where the kids receive one on one care for twelve hours after their surgery. Maelyn woke up for the first time once she reached the cc unit and Paul and I were struggling to get past the nurses to see our little girl. We were a little panicky that she hadn't seen us yet -- we wanted her to know that we were there. When she saw us, our little girl puckered up her very swollen lips and blew us kisses. I knew then that she would be fine.

I spent the night on a pull-out chair beside her crib. Needless to say, I didn't sleep very much. The nurse who was on shift that night was absolutely wonderful with Maelyn. She would help me pick Maelyn up to comfort her for awhile, then she would put her back in her crib to sleep. This went on for most of the night. When Maelyn would see me, she would wave her little hand to say hello. She always knows how to melt my heart...

Pre-Surgery Update

We received a call late this afternoon that Maelyn's surgery has been moved to early tomorrow morning, rather than in the afternoon. Although I felt badly for the family who had to cancel their time slot due to their son or daughter being sick, I was jumping for joy at our good fortune!

One of my biggest worries was not being able to allow Maelyn to eat until 1pm tomorrow -- now with a surgery time of 9am, that is no longer such a concern. :)

We are going to have to get up bright and early tomorrow morning, at about 4:30, in order to make it to the hospital in time for the pre-op appointments. We are going to bring Maelyn right from her crib to the car, in the hope that she will sleep on the way to Sick Kids. If not, I have the car packed with some novel toys, to help distract her from the fact that she cannot eat or drink.

Our bags are packed and we are ready to go -- now to get a little sleep!

Thanks, AM and Julia -- your time and thoughtfulness meant more to me than you could ever imagine...

Palate Surgery

Tomorrow is the big day -- Maelyn will have surgery to repair her cleft palate. We knew this day was coming...we signed up for it just over two years ago. Easy to talk about and imagine when you haven't yet held your daughter in your arms. Not so easy when you have to think about this little one you now know having to go through such a big operation.

Maelyn has a complete cleft palate. This means that her entire palate is open, from front to back. Most children have difficulty eating as a result of not having a sucking reflex and the fact that there isn't a barrier between the mouth and the nose, resulting in food coming out of the nose while eating. Maelyn, however, has obviously learned to adapt to her environment, as she has no difficulty with eating at all! The only noticeable difference is in the way she drinks liquids. Because she cannot suck, she requires a modified sippy cup and she basically dumps the liquid down her throat. It is an interesting process to observe.

This image is an accurate depiction of Maelyn's open palate...although the cleft also runs right through her gums, which is not shown here.

During the surgery, the doctors will take the muscles and parts of the palate which are lined up along her gums and bring them back across her palate -- creating a soft palate. While all of us have a combination of a hard and soft palate, Maelyn will always have a soft palate. This could result in some difficulties with speech, possibly for the rest of her life. During the surgery, the doctors may try to open up her left nostril, which is quite closed as a result of her complete cleft. If not, then they will most likely wait until she is a teenager to completely fix her nose -- they have to wait until the structure of her face is finished growing. Tomorrow they will also put tubes in Maelyn's ears, as she has some hearing loss, due to a build-up of fluid in her ears. This is also a common condition associated with cleft lip/palate. The surgery itself should last between three and five hours, depending on what they accomplish tomorrow.

I am not nervous for the surgery itself -- I fully trust the doctors and their expertise. I know that she will be in the best hands possible at Sick Kids. What I am nervous about is the other stuff.

Her surgery is not until 1pm and we are not allowed to let her eat as of midnight tonight. I am really anxious about this as our little miss is a huge eater, especially in the morning. Food and trust are intimately tied for this little girl and I am not going to be able to explain why I am not giving her anything to eat all day. It is going to break my heart -- we have spent the past four months convincing her that food will always be available and now we are going to withhold food. Yikes!! I know it is for a good reason, but the thought of it still makes my stomach turn.

I am also nervous about the recovery after surgery. Maelyn is only allowed to eat soft food for three weeks -- this is so that her new palate does not get damaged. We have been trying to introduce as many soft foods as possible over the past few months so that it isn't new for her, but she just doesn't enjoy soft food at all.

Another big worry? The arm restraints. Three weeks of Maelyn not being able to bend her arms -- again, to ensure that her palate isn't damaged, but not a very appealing idea. She is very independent, as are most two year olds, and now we are going to have to do everything for her, including feeding her. She isn't going to like that very much!

And if I am admitting all of my fears, one of my biggest ones is not being able to go with her into the surgical room. The idea of handing her off to a stranger and watching her walk away makes my heart drop into my stomach -- she has already experienced this in her lifetime. I worry, logically or not, about what she will be thinking and how scared she will be.

We do have the perspective that others go through much worse than Maelyn is about to experience. Paul and I will be able to handle it, but it is so hard to think about Maelyn going through it -- I guess that is how all parents feel, right? We love her so much and we know that this surgery is important -- for her to able to eat, drink and even speak as 'normally' as possible.

Please keep her in your thoughts and prayers and we will let you know how everything is going as soon as we can. Love to you all!

October Wrap-Up

Second post for today -- in a blogging mood! Check back tomorrow for an update about Maelyn's upcoming surgery...

A few pics to catch up on October events...

Game opener...yes, Maelyn is wearing a Leafs shirt...I lost that battle!

Paul took Maelyn to a farm with some friends -- his first outing on his own with Maelyn. The both had an absolute blast!!

Rolling down the hill...

Kara in the middle of helping me put up pictures in the living room -- purging and organizing...

 

Spending the day with wonderful friends...after their group photo shoot -- we got such amazing pics!

Opening Halloween gifts/treats from Auntie AM and Julia

Silly Bandz -- Julia introduced them to her and she loves them!

A fun visit with Leanne and Jennie....

Getting into the dress-up mood...

Car seat in the hallway...always a novelty. She insisted on being buckled in...hehe!

A Much Needed Break...

Lianne and the girls were kind enough to offer to look after Maelyn on Monday evening, while I went out for dinner with my good friend, Martine, who I haven't seen in months. Trust me, by the time we made it to Mississauga, I was more than ready to hand her over and take a break!

Maelyn had a rough day on Monday. Tantrums, crying, screaming -- it made up our entire day. Everything made her miserable, nothing at all made her happy. When I put her down for a nap, she didn't sleep a wink. I considered cancelling, but then I hoped that she would cheer up when she was with Bryanna and Cassidy.

Thankfully, Lianne is a seasoned mother and was able to handle it when Maelyn continued to be miserable for part of the night. After a little bit of Advil, as Lianne suspected that perhaps her teeth were bothering her, Maelyn returned to her normal, happy self. I couldn't believe the difference in my child when I came to pick her up! Ahhhh....the magic of pain medication. :)

The girls spent the evening entertaining Maelyn and in the end a good time was had by all. Of course -- she was in the hands of loving friends family.

As for me, I had a fabulous dinner out and had a much-needed break from mothering. I love my little girl with all my heart, but I know when I need a break -- it allows me to maintain patience and to keep going. Thanks, Lianne, for helping to keep me sane! :)

One of her favourite activities -- stickers!!

A purple popsicle helps to make a mouth feel better, too...

Love the way she is snuggled into Lianne's arms...

Eating popsicles, snuggling, watching Elmo....

Playing with Charlie -- so cute!!

Halloween Fun!!

What a fantabulous day!!! It was our first Canadian holiday as a family of three and it completely lived up to our expectations! Traditions were born and the excitement was plenty...

Helping Daddy get the pumpkins ready for carving...

Paul had the opportunity to sleep in, but instead got up early, excited about carving our first pumpkins with Maelyn. She loved pulling out the guts of the pumpkins and even helped to separate the guts from the seeds. We loved seeing her experiment with the different textures and get messy! Her attention, however, only lasted for one pumpkin gutting. Maelyn watched Backyardigans and had a snack while Paul and I finished gutting the other pumpkin.

During lunch time Maelyn decided to throw one of the longest and most intense tantrums we have experienced with her. We have no idea what started it, but we were worried that she wouldn't be in the mood to enjoy the day. In the end, she calmed herself down and went on as if nothing had happened.

After nap time, we decided that we needed to make some modifications to her costume. April made her the most the beautiful ladybug costume, complete with ladybug shoes, hat, etc. Unfortunately, the snow that we had during the day made it so that the black clothing underneath the ladybug shell just wouldn't be enough to keep her warm. We consented to the idea that we would have to put her in her snowsuit and just make do -- hoping that Maelyn would play along.

In the beginning, she wasn't too thrilled at being so bundled...

In the end, she loved it!! :) Funny what a magic wand will do!

Mike and Nicole dropped by with Katelyn.....too cute!!

Maelyn's first glimpse of others dressed up....she just couldn't figure it out!

Neighbour fun -- to think, last year Genesis was the only little one in our group....

Trying to figure out why Mike now has hair....

We were wondering how Maelyn would react to the experience of trick-or-treating....but of course, our social butterfly ladybug absolutely LOVED it!! After the second house, she understood that if she said trick-or-treat (in her syllable-type talk) and held out her treat bag, people would give her treats -- the best trick in the world! As soon as Maelyn and Paul walked away from one house, she would be screaming trick-or-treat all the way to the next one. At one house, a kind woman bent down to talk to her and Maelyn helped herself to the treat bowl, taking handfuls of her candy. The neighbour laughed so hard that she just kept letting Maelyn grab the candy -- I didn't mind, either! :)

We went to many more houses than we had planned on visiting, but Maelyn just wanted to keep going. After an hour and a half, we finally got her inside and took off her snowsuit. She then answered the door and handed out candy -- screaming and laughing every time the doorbell would ring.

What a fantastic day! I am normally not a big fan of Halloween, but experiencing the holiday through Maelyn's eyes has made me see the holiday in a different light. It hit me hard last night -- how lucky we are to be parents and especially the parents of such an amazing little girl. Life is as wonderful as a bowl of candy!

Thanks, AM, for the planting the idea of not missing out on this holiday -- delaying surgery by a week was the best thing we could have done!!