21 days post surgery....

Oh my gosh this is embarrassing.....

BEFORE....

AFTER!

I think it is a beautiful repair but we will get the surgeon's opinion next week.

On close inspection you can see a one little white stitch near the back by the uvula (dangly thingy) but the rest have dissolved away.

There is still a little hole behind her gum that leads into her left nasage passage which was left open on purpose until she is old enough to have the notch in her gum repaired (around 8 years old). Unfortunately, food can still enter into her nasal passage but much less than before. So far this has not caused any difficulties.

How has this repair changed things for Su Yee?

1) She talks (and sings) more!

More of her speech is understandable and she seems to improve daily. She still needs help from the Speech Pathologist to conquer all those consonant sounds that are currently missing. Appointments start next week. Currently "More cheese please" comes out sounding like "Moooah, eese, peas" but that is tons better than before the surgery. This week are working on the "R" sound so there has been a lot of growling happening around our house!

2) Food is more fun!

We are currently working on using a straw. An innate skill in newborns is the ability to "suck". However, a baby born with a cleft palate cannot generation enough force to do this properly which is why they need to use specialized bottles to feed these children.  Su Yee has no idea about how to properly use a sippy cup or straw as she has never been able to generate any suction. Today we played around with little juice boxes and coconut bubble tea trying to tempt her into using a straw. The ability to generate enough suction to use a straw will translate into speech development as she learns to manage the air between the mouth and nose. It will also make summer more fun to be able to slurp up some cold treats with a straw!

3) MaMa is more relaxed around mealtimes.

I no longer have to make seperate foods for her and I am so thankful! Prior to surgery I would worry about choking during mealtimes. When she was tired she would fatigue during meals, stop chewing food completely and just swallow.  Now she is managing to chew much more without the fatigue. Meals are not quite worry free yet but they are now the same worries as with any other toddler...how to you get them to eat balanced meals!

I am so thankful for the surgeon's ability to fix her palate. Really, it amazes me what they can do!

We are feeling so thankful and blessed that Su Yee could have this surgery. After all of the fuss and sleepless nights over the last three weeks we are ready switch into summer mode, kick back, soak up the summer sun and take it easy for a little while!

Day 4, 5, 6: Fussy and Oh no....

Day 4
Fussy! That is the word for Day 4. Nothing made her happy or less whiny. She only settled for her Nie Nie and YeYe. I had phoned them earlier nearly in tears looking for advice for our fussy girl. When they arrived she was totally distracted and YeYe had her giggling and running around for a good hour. (Dad can be pretty funny!)

By the evening smell from her mouth and nose increased and it was awful! Her tongue looked swollen but as she wouldn't open her mouth it was hard to get a good look.  She did not eat or drink much despite being well medicated on Tylenol and Advil. I even tried to very carefully brush just her front teeth thinking it would help? (really there should be no toothbrush in her mouth yet!)

Day 5
Oh no...finally she opened her mouth wide enough we got a good look...Thrush! White, red and yucky looking and foul smelling. No wonder she did not want to eat or drink!

By the evening after just a few doses of Nystatin we had a totally different girl. She wanted to drink her water and eat some yogurt....a good start!


Day 6
Phew... with the right meds on board she devoured her "soft" breakfast and drank 1/2 cup of water while we watched her Sesame street movie. A peek into her mouth and it is significantly improved and the smell is almost gone! However, looking into her mouth today we noticed there is a little hole leading from her left nasal passage into her mouth and we are not certain if a stitch has given way or not? Follow up might be a bit sooner than planned!


In the quest for independence.....oh so hungry today!

Day 3; Homeward Bound...

Day three arrived and her IV hand was swollen, red, and sore... so out came the IV! This gave her the exciting new freedom to drive the red car up and down the hallways for an hour or two before we got discharged! Once the car was "out of gas" Su Yee would push it down the hallway and honk the horn so that the automatic door to the Peds ward would open...I wonder who gave her this bright idea?

She looks awfully spry for someone who is drinking 1/2 cup fluids per day and eating the equivalent of one yogurt!

The simple act of being home initially put her in a good spirit despite her sore mouth...until we got to the first meal. She was not allowed to feed herself, the foods offered were mushy and smooth, she was not taking in sufficient fluids so her mouth was dry and foods tasted funny. She pitched a collossal fit! She lead me to snack cupboard only to find it bare and simply lost it...those tiny feet where a stomping mad until she was exhausted and needed to be held.  She did eventually drink a tiny bit but went to bed that night hungry, thirsty and tired. Poor girl! Sleep was fitful with a crummy tummy!

Day 2: You Can't Always Get What You Want....

I hope that Su Yee one day looks back on these posts to know what she went through to correct her palate and as a reminder of how strong she is! We don't know if the cleft palate is a genetic trait. If it is she may one day face this same ordeal with one of her own children.  I love my little miss! She is so determined to get what she wants or needs.  I hope that this character trait comes in handy as she grows up. 

After a sleepless night with Su Yee it was suddenly time for breakfast. Her  surgery was successful but I was not prepared to see her in that much pain. Her mouth was still sore and she winced with every swallow (even on her own saliva!). It was difficult to get her to drink, let alone eat anything. She took two sips of the milk then refused. It just hurt too much. However she began signing for "crackers and cookies"... I offered her the milk again. She was truly puzzled by this and her attempt to get me to understand that she wanted crackers and cookies was rather comical; like a bad game of charades. She would look at me with her head turned to the side, eyebrows furrowed like "why are you not getting this?" Eventually she resigned in frustration but each new meal tray reignited the plea for her favorite foods. She was hungry but wasn't going to give in and eat unless she could get what she wanted! Thankfully she was still getting IV fluids with glucose.

Her face is still swollen but the drool is more clear.
Oh so unhappy!

BaBa brought in all of her favorite soft foods (yogurt, raspberry Kefir, booster juice, ice cream) but even these did not tempt her to eat. Everything hurt and nothing tasted right with all the blood and stitches in her mouth. Her tongue was quite swollen and a foul smell emitted from her mouth and sinus cavity. She was frustrated all day trying to play with the IV stuck in her hand. The shopping cart was her best option so we spent the day once again walking the halls. 

YeYe Dale and Nie Nie Joanne and Auntie Tracy stopped by for a visit. This was exactly the kind of distraction that Su Yee needed. Stickers and puzzles were interesting when Nie Nie offered them. There were even a few smiles and attempts at talking.

The prescribed diet regimen (pureed and soft foods) will not be easy once we get home. Su Yee really likes to eat dry cereal, apples, crackers, cookies (things that crunch) more than anything else right now. She will be on full fluids for 3 days then progress to pureed foods for at least a week. If everything goes well she can progress to soft foods days 8 - 21 but pureed food is recommended. She is not allowed to feed herself. I sent Patrick (BaBa) home to hide all the crackers, chips, cookies and cereals in the house. I am not willing to fight with her over food.

Thank goodness they her found a real bed! She finally had a nap!

Waiting...then Mad as all Hell...

By 6:30 am Wednesday morning (May 18th) we were back at the hospital. Su Yee protested about the lack of breakfast all the way there!  Registration had no record of the rescheduled surgery so we waited for 35 minutes (with a hungry 2 year old tugging at our pantlegs) for the OR to confirm our surgery was indeed at 8 am.
Su Yee was very reluctant during the pre-OP reassessment. This time it was not novel to change into the stripy pink PJ's.

It is quite the hurry up and wait process. You wait to register, hurry to pre-OP, wait to be assessed, hurry to the OR waiting area, talk to the surgeon, the anesthesiologist and then finally the OR nurse arrived to take her away. Su Yee liked the bonnets that everyone was wearing so the nurse coaxed her out of my arms with the promise of her very own "hat" and a ride in the green JohnDeere wagon filled with pillows. She rode around the corner and into the OR waving like she was in a parade! I am certain that only kids from Saskatchewan get to ride to the operating room in a green JohnDeere wagon! Prison PJs, bonnet and green wagon; it all seemed a bit surreal!

The next wait seemed like forever but it was only 1 hour! The plastic surgeon greeted us with a big smile on his face saying everything went really well. She had lots of extra tissue to work with so the wide cleft palate was easily closed. He also partially fixed the nasal passage by the alveolar notch (gum notch) which will make future orthodontic work easier. Then we waited again until the recovery room finally called. "She was awake and please come see her!"

Entering the room I could see her lying down with several nurses hovering over her looking puzzled. She was grunting and pointing toward the end of her bed.  Not crying, just grunting and pointing. Nobody understood what she wanted. I recognized she was mad! Seeing MaMa only increased the volume of grunting...they placed her in my arms and she started to kick and scream while pointing at the foot of the bed. Then I spotted it...her washcloth a.k.a. "SUCKY" was at the foot of the bed tucked inside her bonnet. She was about to blow a gasket if she didn't get "sucky" right away. She was so MAD. She did not really want me to hold her but was too groggy to really sit up byherself and she kept spitting up lots and lots of blood. It took her 30 minutes to lay her head on my shoulder. I had betrayed her and let her go in that green wagon to this bad place...

On the ward she was still mad at both of us. We arrived to our room to find they brought her a crib to sleep in...how much more unpleasant could they make this? She did not want to be in a crib...cribs must hold some bad memories. A bed could not be found so instead we unfolded the uncomfortable "parent's bed" to try to rest.

 
With her guard up, she hardly slept at during the day despite the "good" drugs that she received. Instead after 1/2 cup each of milk and apple juice (both which caused pain) she stomped up and down the halls until exhaustion overwhelmed her around 11pm. We had little choice but to let her walk. Our room was shared with two very sick infants who needed to sleep and Su Yee was mad as all hell so walking with her shopping cart was the best way for her to deal with everything. She would only sit still for 1/2 an hour then protest loudly either from the pain or just because she was mad. So, with copious amounts of bloody drool oozing from her mouth, she pushed that shopping cart up and down the hallways with her IV in tow. The Peds staff just laughed...at least until the ankler biter cart got ahold of their legs. Her determination left us apologizing a few times. Did she eat...no, drink...1/2 cup of milk and juice, did she want to rock with MaMa...NO.

Night number one was restless, waking every two hours in need of pain control. Poor, mad, sweet Su Yee! The whole experience brought me to tears (and I don't cry easily). I have never experienced anything like that before!

Crystal Clear...?

I love how the water at Waskesiu lake is crystal clear at this time of year. You can see right to the bottom. There is no guessing what lies beneath the surface... a clear path lies ahead.
Toby is the only one brave enough to swim as the ice has just come off the lake.

The weekend was a great family retreat. Su Yee enjoyed her bumpy stroller rides and even got in on the fun hollering at Toby to "go get it" and "come back" to shore.

On the drive home we discussed her surgery and all the promise it holds for her speech development. Monday we packed our overnight bags in nervous anticipation. The path seemed crystal clear we could see the end result...

This morning we registered then waited in the less than pleasant hospital environment for 6 long hours with a busy, hungry, thirsty toddler. There were no toys; this was not a peds friendly place.

Then without warning her elective palate surgery was bumped from the Operating Room by an unforseen trauma that consumed the limited medical resources. A practice that seems to be common place in our province. We are now rescheduled for tomorrow morning.

I am thankful for being rescheduled so soon, but anxious that this "bumping" might happen again. (Royal University Hospital is designated for all the trauma's in the province.) It might not seem like big deal but the ONLY surgeon doing the clefts in our province retires June 1st. I was anxious this morning and more so now.

However after much wrestling and reading tonight it is crystal clear to me that we have to trust the surgery will happen and only God knows the right timing. I have been very unsettled about the whole process of handing my newest love over to the surgeon. She seems to me small and vulnerable though she has proven herself over and over to be very resilient. Tonight after continuing to wrestle through my own anxious thoughts I am resigned leave the whole thing with God. The pervasive thought is that I must trust in the Lords plans no matter how confounded and unclear...thus we wait until He says go. Perhaps it will be tomorrow - perhaps another day.

My verse today:
"Trust in the Lord with all your heart and lean not on your own understanding; in all ways acknowledge him, and he will make your paths straight." Proverbs 3: 5-6

We have a Date....

We officially have a date for Su Yee's long awaited surgery - May 17th! 

Su Yee was born with a cleft lip (cheiloschisis) and a grade III cleft palate (palatoschisis).  As we have no medical history for her or her family we will never know the what caused the atypical development of her lip and roof of the mouth during the fetal period. We simply know that it needs to be fixed.

Su Yee's cleft lip was repaired (cheiloplasty) at 15 months old by the Chinese charity Tomorrow Fund. The surgeon repaired her lip beautifully. I wish I could personally thank him/her for their excellent work. 

15 months old with newly repaired lip

At 30 months Su Yee's scars under her left nostril are barely visible. Many people do not notice the minor asymmetry of her little nose or smile. 

Ready to spit out that toothpaste...
It is funny to her that it also comes out her nose!

What is not seen causes the most trouble for her, especially in speech and language development.

Say Ahhhhh! 

The surgeries for the palate, notched gum and her misaligned teeth will be done in stages. 

The corrective plastic surgery for the cleft palate is the next step. It involves taking existing tissues and creating a new roof for her mouth. 

Diagrams from American Society of Plastic Surgeons (www.plasticsurgery.org): What to expect from Cleft palate surgery.


The surgery for the notch in her gum should be scheduled around age 7 - 10 and she will need to braces to realign her teeth.  We are lucky to have a cleft palate team to help co-ordinate the services that she will need in the future.


If the surgery goes well Su Yee (and MaMa) will spend only a few nights in the hospital. Following the surgery Su Yee will be in soft arm braces until her mouth is healed (~ 2 weeks). I am a little worried about how she will hold her new favorite doll (Kai Lan) with the arm braces though I am sure she will find a way as she is so resilient! She loves when I make her hair the same as Kai Lan and will ask me if they match. We hope the surgery and recovery will go smoothly and will try to post her progress once things normalize again.

"MaMa...Match?"