Our experiences with Cleft Palate repair

I did a ton of searches on the internet over the last year to read other peoples experiences with their child's cleft palate and the repair.  I found a lot of different information all over the place.  I wanted to jot down a few of my experiences with Audrey's cleft palate repair as a reference for others who may be readying to go through the same thing.

Recommendations:
-Wear dark clothing the entire time.  I had heard this and wore a black tee and sweatshirt the day of surgery, but hadn't planned to need to wear dark colors the 2nd day onward.  But I definitely needed to, so wore the same tee the entire time at the hospital.  Even on day 6 post-op, she still drools blood during her sleep, so dark bedding and clothing would be good to have to reduce stains.

-We've always put Audrey to sleep with this seahorse and she seemed to like it so we sent it back with her during the surgery.  Well apparently it was a great decision because it was the first thing she reached for as she was waking up and she has wanted it played continuously for the days after her surgery.  It has had such a calming effect on her.  Now when we go into her room in the morning, the first thing she wants us to do it turn it on and carry it downstairs with us.  So if your child has a favorite toy or lullaby item, send it to surgery with him or her and hopefully it'll have the same effect ours did.  We did take some other familiar toys and books to the hospital, which she played with very briefly.  She just wasn't in the mood and really just wanted to be soothed the entire time.

-Audrey has to wear her no-nos (arms restraints) for three weeks.  Different doctors have different time frames.  I discovered in the hospital that having colorful covers for the no-nos is nice - we were given some at the hospital that had been tie-dyed.  Apparently a family of a daughter who'd been a long-term patient at the hospital dyes men's socks to give to patients for these covers and it's been really nice.  I'm thinking of buying some and dying them myself - they'd be pink of course!

-a handheld blender will be your best friend.  I bought this one at Costco (for $20!) a few weeks beforehand and am so glad I did.  I have used it for everything so far and it's way easier than lugging out my food processor constantly.  I'm wondering how on earth I made baby food without one of these for so long.


Like I mentioned previously, Audrey is on a puree/liquid diet only for three weeks and then soft-foods only for an additional three weeks (again, different timeframes from different doctors appears to be common).  Her weight and feeding has always been such an issue for us so I'm really trying to think of foods that she likes but can be easily eaten now.

Foods I've been feeding Audrey:
-infant oatmeal mixed with milk
-ice cream
-chobani yogurt
-regular full-fat yogurt blended with fruit
-applesauce
-pureed soups
-pudding
-mashed up bananas and avocados softened with milk
-refried beans, mixed with milk
-puree of sweet potato/chicken/grapes
-mashed potatoes, thinned with milk
-pureed fruits, vegetables, prunes

What I didn't know
- the breath.  Oh my goodness, her breath.  I didn't know that her breath would be so bad after the surgery.  I know this can happen with an infection, but really her breath has been this bad from the very beginning.  It's a sign of how much I love her that I'll still kiss her and cuddle her cheek-to-cheek when her breath is as rank as it is now. 

-the clinginess.  Audrey's always been a mama's girl, but she has been so needy and clingy lately.  There are very few times throughout the day where she'll be content without me there.  I see glimpses of her usual self occasionally, but in general, she's just been very clingy and mopey

-the bleeding.   Like I said above, she still drools blood in her sleep, so I'm washing sheets every day.  It's getting more and more diluted, so I think it will hopefully be coming to an end soon

Every day Audrey is getting better and better.  I think every child and every repair is so different.  I was expecting two weeks of up-all-nights, crying, etc but her sleep was back to normal when we came back home.  We did wake her up to give her tylenol for the first 4 days or so to keep our timetable of giving her pain meds every 6 hours consistent.  But her sleep was fine.  Maybe because her cleft was primarily in the soft palate, but our experience seems to be much better than others have been.  We feel very fortunate so far and are so happy to have this behind us right now. 

Palate Surgery

On Wednesday, February 13, Audrey underwent her palate repair surgery.  It was a day that I'd been both anxiously anticipating and dreading for the last 14 months.  I couldn't believe it was finally here.  I was so nervous leading up to it.  I knew that she'd be in a tremendous amount of pain that I wouldn't be able to fix and seeing your child in pain is every mother's worst nightmare.  Anytime I'd start to think about it or talk about it with her doctors or schedulers, I started to tear up. 

We arrived at the hospital around 6am.  Audrey awoke when we moved her from her crib into her carseat that morning, but was her usual calm self despite the early wake up and lack of food.  We waited at the hospital and I kept her happy by swaying with her and singing.  She of course wouldn't let anyone else hold her.  The nurse asked how the handoff would be and I said "awful" so we gave her medicine to calm her down and make her drowsy before the surgery.  I think it was Versed.  This made her totally loopy, silly and drowsy so it did its job.  She definitely didn't mind being handed to the anesthesiologist around 7:50am thanks to the medicine.  It made it easier for us too, that she wasn't crying, scared or upset to leave us. 

Tim and I waited anxiously in the waiting room.  It was a pretty nice set up at the hospital, with comfortable chairs and a television to give you regular updates on your family member's status.  Tim got breakfast and we continued to wait.  Around 8:30 the ENT came out, told me Audrey did well with the anesthesia and her ear tubes were fine and wouldn't need to be replaced and that the plastic surgeon was getting started.  The plastic surgeon came out around 9:40 and said Audrey was done and everything went smoothly.  We were fortunate that most of the cleft was located in the soft palate.  It was a teardrop shaped cleft, with just a little in the hard palate and most in the soft palate (the back of the mouth).  Surgeries in the hard palate are more difficult and the recovery is much worse.

A little later, they called me back into the recovery room to see her. Only one parent was allowed into Recovery.  That part was awful.  She was loudly crying, squirming, unhappy and out of it.  I grabbed her from the nurses, and tightly held her and swayed and rocked her.  She eventually calmed down.  Apparently as soon as she came out of anesthesia, she was grabbing for her lullaby seahorse we'd sent back with her.  It seemed to really help calm her down and I played that continuously for her.  She had blood smeared on her nose and mouth, was swollen, had her arms in splints and was so unhappy.  I tried to keep it together but couldn't help but cry while holding my sad, pained little girl.

Eventually she calmed down enough to drink a cup of apple juice/water.  She would calm down and then cry again so we eventually gave her morphine also.  After about an hour, the nurses wheeled us up to her room and Tim joined us. 

The rest of the day was pretty awful.  Tim and I alternated rocking Audrey in the (totally uncomfortable) chair in her room.  She was doped up on morphine and tylenol so woke up every few hours for about 20 minutes or so.  We continued to offer drinks but she refused to drink anything.  Tim slept in the fold out couch while I slept with Audrey in the hospital bed.  It was pretty restless sleep, with the nurses in and out and Audrey squirming on me but at least she seemed pretty sedated and wasn't too fussy.

I had hoped the next morning would bring a drastic turnaround but we still didn't see it.  The nurse turned her IV off around 9:30 and said that she would feel the effects in about 2 hours and be interested in drinking then.  We couldn't go home until she drank about 2oz/hour so we were anxiously offering her water, apple juice, milk, applesauce, popiscles all day.  It wasn't until around 3pm that she finally took her first sips of water.  Hooray!  I knew she was still in pain and confused but was thrilled she was finally expressing some interest in drinking.  We got our first smile when we took her into the Ronald McDonald play room and stood her at the music table.  It was a quick, tentative smile but she seemed to relax for just a moment.

We were able to leave the hospital around 5pm.  She seemed relieved to be in her carseat and I think she knew she was headed home.  That afternoon, she had begun playing with her tongue, running it over her mouth and lips.  She could tell things were different.  She was still very swollen and incredibly pale but was starting to be interested in playing for a few minutes here and there.

Now, we are on day 3 post-operation and Audrey is gradually returning to herself.  She seems to be getting used to the arm restraints we have to keep on her at all times, so she can't put her hands in her mouth.  This makes it hard to walk and to play, but she's adapting.  She is interested in drinking milk and water.  Food is still a struggle, as she is still relatively reluctant to eat.  I've given her a variety of foods including baby oatmeal, mashed banana mixed with milk, yogurt, applesauce, ice cream, pureed sweet potatoes/chicken/grapes, and pureed chicken chili that we ate for dinner last night.  Some foods have been more successful than others, but she's only eating a little at a time, so her appetite still seems very low.  I hope that it picks up soon. 

For the first three weeks, she's allowed to eat only purees and liquids.  For the second three weeks, she's allowed to begin eating soft  foods - macaroni and cheese, soggy cereals.  Nothing crunchy or hard.  She's to keep her arms in restraints for three weeks. 

Seeing your child go through this amount of pain and misery has been awful.  But her recovery has exceeded my expectations so far.  I had no idea what to expect since every child is so different, and I have heard worst case scenarios, of hourly wake ups all night, nonstop tears and fussiness, weeks of recovery.  We have been blessed so far that Audrey seems to be healing so well.  I know we have a long way to go, but she has been doing so well.  The first day was definitely awful but she's continuing to improve.  She is definitely still pretty subdued and has cranky spells.  Plus she wants to be held by me constantly and is tough to make her smile, reluctant to play and very somber. But I think her recovery has been great so far. 

Another reason we feel so blessed is by all the love and support we've received.  Our friends and family have given us so much encouragement, prayers and good wishes as we've gone through this with our sweet baby.  It's been so encouraging to know how many people support us and love our little girl. 

When it rains, it pours, eh?

So I've been noticeably absent from the blogging world for the last few months.  There were some issues with blogger where I couldn't upload photos.  Also, November - January were crazy for me both at work and at home.  I had crazy hours at work, planned a birthday party for Barrett and Audrey, traveled for Thanksgiving and Christmas and battled multiple round of illnesses for our poor family, including ear infections, strep throat, colds, and coughs.

Ugh.

January is my busiest time at work and I was routinely working 14 hour days and weekends for a while. At the end of January, I was supposed to be able to enjoy a little reprieve before the stress of Audrey's mid-February surgery began, but that was not to be.  It started with an ache in my tooth last Monday afternoon but turned into intense pain by Tuesday morning.  Visits to the dentist and endodontist resulted in a repeat root canal, a few rounds of antibiotics, nights of vicodin, days and nights of intense pain (probably worse than my c-section), and now a super-swollen face.  Apparently it's a tooth infection, which was probably lying dormant for a while and was triggered to flare up by the previous week's cold.  So all the infection was trapped in the root of my tooth area and swelling against the bone, causing this tremendous pain.  Ouch!  The pain decreased this past Monday morning, but I awoke to a puffed-up face, as the infection found its way out, courtesy of my cheeks.  Charming, huh?

Fortunately I'm now on the mend and I'm trying to get my life back on track and part of that resolution is to get back to my little blog.  I really enjoy documenting our lives.  This time is just flying back and taking the opportunity to document it helps me to remember each stage later on.  I always find myself looking back at old posts.  As I'm getting older, my memory is getting worse, so I can barely remember yesterday, let alone 2 years ago! 

We have a crazy week ahead next week with Audrey's surgery.  I'll post more about that and what else is going on with the family in the next few days as I have time.  Hoping I can be more diligent about keeping up with our family's adventures this year!