.::. The Cleft Palate Repair .::.

To my dearest daughter, Jaime - Someday you might see this and have a glimpse of this chapter in your life which you will (thankfully) not remember.  Having to send you for surgery has been the toughest thing that I've ever had to do, I wished I could have gone in your place.  I love you so much.

Since Jaime's birth, I've been looking forward to her cleft palate repair surgery.  It's always at the back of my mind and we've been doing all we could to prepare her for it.  I did extensive research (as usual) and joined all the FB support pages to read about others' experience to prepare us for it.  I bought many cups to let her get used to drinking with the cups.  I fed her well and made sure that she's ready for surgery.  In her first months, I drove her across Singapore to Yuguo for massage, then I went for their classes to do it myself for immunity.  We did all the preparations and arrangements and pulled her out of infant care 2 weeks before her surgery to avoid her falling sick.

Her surgery was scheduled on 17th May 2018 when she was 8 months' old.  At her 6 months' review, Dr Chia and the nurses were somewhat surprised to see how chubby she was and allowed us to go ahead for the surgery at 8MO instead of 9MO.  We planned to take leave for the whole of May to get through her surgery.

More than a week before surgery, she came down with runny nose.  It wasn't serious, but the nurses specifically said that she should not have any runny nose 2 weeks before surgery.  We checked her in on 16th May 2018, told the doctors that she had minor runny nose a week before.  They asked some questions and were initially alright till the main anesthetist came back and didn't want to go ahead with the surgery due to her runny nose.  They made her take a blood test, it came back negative around dinner time and we were supposedly ok to go ahead.  Then one of the junior doctors came by after 9pm and told us that the anesthetist didn't want to go ahead as her white blood cells while in the acceptable range, was showing that she probably just recovered from a virus.  Since surgery is elective and she's still young, and the surgery site is near her respiratory tract, they wanted us to postpone the surgery.  So, with that, we spent half the day in hospital (it was dreadful) and came home.

We were hoping to schedule surgery a week after, but alas, there weren't any slots till a month later.  It was quite dreadful since we needed to keep her at home for another month.  Thankfully, I was allowed to work from home till her surgery, and we spent the next 3 weeks quarantined at home.  I worked from home and let her nap as much as she liked, ordered food in.  This time, we were determined to follow-through with the quarantine and make sure we go ahead with the surgery.

Those weeks were stressful.  Every sneeze and cough put me on high alert mode, we were extremely careful and wary.  The weekend before surgery, papa was sick, and I had to do her admission alone and stayed with her for the first night.  She was her usual self, smiley and happy, curious about her surroundings.  She barely slept after being admitted and had to fast from 6am onwards.



Just look at this happy baby.  In my heart I was thinking, you've no idea what's coming baby.

I barely slept that night in the open ward and Jaime only finished 50ml of her milk at last 6am feed.  I was dismayed really, and prayed that she'll not fuss too much till her 1pm surgery.  She fell asleep by 7am after I put her in the stroller and walked around the ward.  I walked for 2 whole hours round and round the ward till papa came at 9am.  I really hoped that she could sleep till her last feed of glucose water at 11am.





Here's Jaime asleep in her stroller after I walked round and round in the ward.

She didn't drink much glucose water at 11am, but she didn't fuss much till then too.  All was well and it was past noon when the operating theatre staff came.  I thought that it was time to head down, but they came with the news that her operation was delayed for more than an hour due to delays in the surgeries before hers.  It was the worst news possible as she was starting to be fussy.  We walked around and entertained her for 2 more hours till we finally went down.

I always thought that I would go in the operating theater with her before she went to sleep, because I wanted her to be happy and calm before surgery, not struggling and upset.  Alas, it didn't happen and they carried her in.  They didn't allow us in unless baby was fussy and crying.  We didn't do any goodbyes, we just crept away after the anesthetist carried her.



Here's my brave girl in her surgery gown.

We being the very practical people we are, went straight home to shower and rest for the knowingly tough weeks ahead.  I had a good shower and pumped milk while the husband napped since he was taking the night shift.  Then we went to have dinner at Holland Village and bought balloons for her.  Just when we were choosing balloons, the hospital called and said that the surgery was over and everything went well.

We went down to the operating theater right after we dropped off stuff at her bed.  There she was, looking so tiny with bloated cheeks and blood-stained mouth.  She was drowsy, but did open her eyes briefly to look at us.



This is the first glimpse of her after she was out from the operating theater.



After getting back to the ward, she was fussy and we had to comfort her.  Since it's late in the evening and there wasn't nurses to teach us how to feed her, she was on drip till the next day.  She dozed in and out of sleep, looking really uncomfortable.  I will always remember that night when we tried to feed her medicine.  Two night shift nurses helped us, and it took 4 adults to try and pin her down to feed her medicine.  She cried and screamed for Mama repeatedly, then called out to Papa - it was the first time we heard her call Papa.  She struggled, arched her back and turned her head to avoid having anything in her mouth.  My heart was in so much pain seeing her like that and really worried that she'll be in pain after spitting out most of the medicine.

I went home with a heavy heart that night, but with determination to rest and get her feeding the next day.  Doctors and nurses came to see her, we could start feeding her the second day.  It was a struggle, but she did manage to drink some 60ml or so from a syringe.  I rocked her and coaxed her and caught windows when she opened her mouth.  She was also very tired and slept alot from the medication.  The husband wasn't happy that I wanted to wake her up to feed every 2-3 hours.  The nurses had to explain the importance of having at least 60ml of fluids every 3 hours before he was convinced.  I was hoping to discharge and go home that day, and the nurses wanted us to feed her 80-90ml every 2 hours to discharge us.  It wasn't easy, but we did manage to feed her 80ml.  She vomitted after coughing in her sleep that afternoon, but was still drinking well.  The nurses said that it could be a side effect of the medication, we just need to continue feeding her.



Dozing off in my arms after a feed.



Day 1 post-surgery, and she was already smiling.

All was well and the doctor actually discharged us that evening, till she vomitted again and the nurse was reluctant to let us home.  We agreed to stay for another night, and papa fed her for the first time that night - it didn't go quite well, she was fed till her splints flew off and papa's face was drenched in milk that she spit out.





Here's Jaime in her home clothes and ready to go home!

By the time the doctors dropped by the following day, they discharged us.  Gosh, it was great to finally bring my baby home. 





I believed that it would be easier for her to feed and sleep in a familiar environment.  I can't remember exactly how it went, but she became very efficient at spitting out milk.  And she gained some consciousness and energy, enough to cry and spit for 2 whole hours that we tried to feed her.  It was such a torture trying to feed her and hearing her cry for 2 hours straight.  We were both tired and it's simply dreadful to feed her.  By the time we finished feeding her milk, it was time for medication already.  She didn't sleep well with the splints either, it was really trying for us.

Everyone said that it'll get better, except that it didn't.  I took most of her milk feeds initially till my arm felt like it was dropping off from carrying and rocking her for 2hours a time. 















By the 6th day, she still wasn't drinking.  We tried everything, from a spout to a syringe to many different cups and spoons.  I cooked broth, fed her breastmilk popcicle and steamed her favorite apple-onion juice just to try to get some fluids into her.  Nothing worked, she was still crying the house down and struggling every feed.  I was really upset by then and couldn't take feeding her anymore.  Papa took over.





She slept in my arms most of those days.



Look at all the different feeding stuff we have.



We had to take pictures of her stitches daily to send it to the CCRC nurses.  Initially, seeing these stitches in her mouth pained me so much.  But it was quite amazing seeing it heal, till all the stitches dropped and her palate looked perfect.

I was going back to work on the 7th day and papa was alone with her.  I was half thankful to go back to normal life yet half guilty and very worried.  I was crying in the car before I went up the office that day.  Things did improve ever so slightly, but she was still struggling and feeding took a long time.  I was really upset that day and cried again while washing her bottles. I think my spirit broke that day, I felt despair, after all the determination wore off.  Everyone told me 7 days, that was how we passed through the first week, waiting for the 7th day.  We soaked so many bibs and hanky with breastmilk every feed till the smell of milk made me sick.  Everything was so sticky and oily that we had to soak them in soap water before sending it into the washer.

Everyone said that it'll get better after a week.  And our miracle did happen after a week.  On that 7th day, I got a spout feeder from another cleft mama in the evening.  We did have some success with it as she seemed receptive initially, but we still ended up feeding her with a syringe. 

On the 8th day, while at work, the husband sent me a photo.  My baby finished her first bottle of milk post-surgery!  Gawd, I was so happy that I almost burst out in tears at work.



Things got better exponentially since then.  She was actually doing well all along, just that feeding was a torture and took very long.  Once she started feeding with the spout, everything went well.  She was recovering well after her first review with the surgeon 2 weeks post-surgery.  We sent her back to school by the 3rd week post-surgery, and her teachers managed to feed her too.

I still shudder thinking of that first week.  It was really tough, but I'm so thankful that everything went well and we're now over this episode.

You know how people say that god will never give you something that you cannot handle?  And how things will always get better when you feel like you're at your breaking point?  It's true. 

I still believe that everything happens for a reason.  Having Jaime with a cleft palate and impending surgery and associated risk made me intensely aware of how precious and fragile life is.  Part of me was really afraid that she'll not wake up from surgery, and I truly cherished every moment I had with her right from the beginning.  I was never upset when she cried through the night and wanted to be held, it was a blessing that I could comfort her and hug her in my arms.  I often asked myself if I'll do things differently if I were to lose my baby the next moment, and I truly gave her my all.  I might not have been this way without going through these.  And we wouldn't have stumbled upon her childcare if not for her cleft palate.

Now that we've closed this chapter, there's still a long road ahead with potential surgeries and multiple follow-ups for hearing and speech.  This has also shaped us as parents and established our priorities.

Come what may, we've got this.

And to all mamas (and papas) in the same boat, know that you're never alone and it'll always be worth it.