Post Op Palate Surgery 3 Week Appointment

I'm going to go ahead and warn you... There are lots of pictures ahead and they all include eating!

The post op appointment went well.   We had a late appointment (which we hope to do again), so we were able to have lunch before going to the hospital.   FL was thrilled to be eating soft bread with cheese and meat ALL BY HERSELF!    We figured she'd be released from most of her food restrictions (we ended up imposing more than our surgeon did) so we let her do this a little early to celebrate!

The appointment actually went quickly this time.  I didn't have time to take pictures because we kept moving the whole time.  Audiology did not want to run a hearing test (one of the tubes looked "off") so we will do that in 6 months.  The ENT thought that everything looked ok.  One of her tubes was slightly turned, but he wasn't concerned.  FL's cleft surgeon thought everything looked good and told us we should expect to see her begin to experiment with making different sounds soon.  She should also begin enunciating better. 

Post op thoughts/notes:

This was our first day without any pain medication.   We probably gave her ibuprofen too long, but we wanted to be sure she was comfortable.

Giving her any kind of control over her eating made her happy during that last week before post op.  I cut up bananas small and let her feed them to herself (fingers only) as well as eggs and sweet potatoes.  She was so excited!

We are cleared to let her eat with a plastic spoon by herself.  Fruits, soft bread, veggies, soft meat, etc. are good to go as well.  The doctor told her to wait on the crackers.  She was dissapointed, but has totally accepted his answer.  When she asks for them, we ask her what the docotor said.  She holds up her hand and says WAIT in her own little way. : )

Long and short pieces of suture that are dissolving are hanging down in her mouth.  We've cut a few, but one way back in her throat was bothering her.  I really didn't feel comfortable sticking scissors back there!!!

For the first time, FL has boogers in her nose! : )

Her mouth still stinks a little...  Kind of like a poot.  

She is singing and making silly noises more. : )

She is not making a lot of new sounds yet, nor is her pronunciation significantly better, but we are not concerned and have our first speech therapy appointment in April. 

She still has a hole a little smaller than the size of a dime in her gumline and part of the roof of her mouth that connects to it.  This is totally normal.  It will be corrected when she has her bone graft in a few years.

Food comes out of the side of her nose that the hole is on.   You should have seen the mess she sneezed out today!

As of right now, we are not cleaning out her nose other than teaching her to blow it and wiping the nostril area.

The area where the donor tissue was taken from is almost completely filled in - it is so amazing how the body heals itself!  It is so amazing that she has a palate!

She is super happy. : )

After a nap on the way home, we swung by Toys R Us, picked up an indoor children's trampoline (great for sensory, balance, energy outlet, etc) and had dinner and ice cream together as a family.  This was the first time FL was able to feed herself with a spoon and eat noodles since surgery.  She was thrilled!  It was a big moment for her and for us!

Her sister was happy for her, too!

Yay!  She loves it!

Here's the play by play:

I can't explain how excited she was to have her feeding independence back and to be able to take big bites without it squishing through her nose!  Just think, four months ago she was eating nothing but one bowl of rice cereal and five bottles of formula a day and now she is eating EVERYTHING and eating it well (with an adoring mama taking pictures of her nonstop!)!

You know we had to have the free ice cream (and no, this was not hers!)!

FL had chocolate ice cream - chocolate is hands-down her favorite!

Not to be left out, c had ice cream, too!  They both don't love the cold aspect of ice cream, so I make them Ice Cream Soup.  I just stir it really well and let it melt a little.  If we are at home I'll put it in the microwave for a few seconds.  This, they love! : )

I had such a wonderful day with my little family!  I love you all!

 I am so blessed.  That thought is not lost to me.

 Somebody pinch me! : ) 

Life seems so sweet right now!

24 Hours Post Palate Surgery

Well, if the picture doesn't sum it all up for you...

then nothing will!  : )

They let us go a little early at the hospital because of some potentially bad weather headed our way.  I've never been more thankful for bad weather!  Truthfully, FL was doing really well, but everyone knows that once you get home you just feel better.  Going home was the best thing for her at this point.  She was willingly eating and drinking and her pain was under control.  Home we went!

C fell asleep about five minutes after we got in the car and slept until we pulled into our driveway almost two hours later.  FL slept on and off during our drive home.  With her new palate, she has to retrain her body how to breathe.  She did fine when awake, but when asleep her body tries to do it the old way (breathing through the hole in the palate) and panics and wakes her when it can't.

We had a pajama day at home and were so, so SO thankful for meals that were prepared for us by others so we could feed the girls and get them back in bed for naps.    They slept a full nap time (C even longer!) and a full night that night (and then some!).  We were all SO tired.  I was really surprised that I didn't bounce back from a lack of sleep like I used to...  does that mean I'm getting old?!

Some Post-Op Thoughts for Families Like Ours:

-  Wear dark, comfortable clothing in the hospital and the first few days home.  You will get a lot of discharge on your clothes from your child's mouth and you will be holding and feeding your child most of the time.  I had spit, blood, serum, medicine, pudding, urine, juice and who knows what else on me by the time we left.

- Prepare your child's sleeping space for stains.  Blood was everywhere in her crib after her nap.  Thankfully, we covered her sheets with an absorbent, soft beach towel and changed out her pillowcase to one that could handle stains.  There is so much drainage that comes from her nose and she sleeps all over her crib at night.

- Have soft tissues, cloths available all around the house.  Boogers happen anytime, anywhere.  And these are no ordinary boogers!  Another cleft mom suggested "Boogie Wipes" to me, which are soft, moist saline wipes that do a great job of gently cleaning gummy noses.  My daughter does NOT like to have yucky anything on her, so her runny nose really distresses her.  I had her carry a baby wash cloth with her and had some soft, dry ones scattered around the house in addition to her "boogie wipe."

- Prepare for food to be ready when you come home.  I was so, so, so tired from mothering my girls while in the hospital that I had no energy left and almost fainted at one point while helping the nurse with FL.  You will be drained, even if just one night!  We had help set up to come for the farm and ended up not cancelling it because we were so tired.  We didn't even do that when we came home from China with jet lag!  We were TIRED!

- Bring lots of healthy snacks for you and your family.  Snacks saved us from meltdowns and having to run here and there trying to find food.  We could just focus on waiting during FL's surgery and recovery because we had plenty of snacks.  I even had a few things for FL that we used when in recovery.

- For us, the hospital had everything that we didn't have.  I never stressed about packing the right cups, syringes, etc. for FL post op.  The hospital even had soft food for FL to try, though I did bring my own.  They even had no skid socks for my barefoot Alabama girls to put on their feet as they paraded down the halls in the early morning!!!  However, our hospital is a very nice children's hospital.  Everyone did everything they could to help us out.  The general attitude of the staff was postive, helpful and upbeat.  Things were designed for ease of the patients and their families.  If you don't think your hospital is like ours, then make plans to do what you need to do to take care of yourself.

- Hospitals are not comfortable to sleep in.  Period.  Get rest before you go, and if you have a blow up mattress or a fold-up camp chair that you can prop your feet up in, bring that!  Otherwise, rest up!  You're in for a long night, and your child needs you.

- I brought lots of quiet toys that required little thinking to entertain C while we waited and for FL to do while in bed.  Stickers were a big hit again, our Chinese magnadoodles were a favorite and some cars that go on a lacing string were also popular.  My sister's old Memory game from our childhood also kept both girls enertained.  C has a princess playmobile set that I let her use from time to time.  That kept her busy and calmed her after FL went back for surgery.  They had gloves and masks available for those worried about getting sick or that might be sick.  C had a great time playing doctor in her mask and cleaning with her gloves on.  Be creative!  Fun is hiding everywhere!

-  Our surgery was Wednesday, we went home Thursday, stayed home Friday and had the weekend to recover.  It was fantastic to have my husband with me the entire time!  Having another set of hands to help enabled me to get rest and be a better mama.  Along with all of the food people brought to us - SO helpful!

- We were not in a stage of attachment where we felt it best to leave C with anyone.  Bringing her with us brought certain challenges, but I wouldn't have done it differently in our situation.  She distracted me from worries during surgery, brought comfort to her sister and the whole experience brought us closer together as a family.  If you have a child that is reasonably well behaved, what we did might work for you.  It wasn't a piece of cake and required more planning, but it was what was best for our family.

- Originally, we planned for Sam to stay with FL, as they are closer and C to stay with me at Aunt Sally's during the night.  C has been needing me with her almost all of the time, so this seemed the best plan.  We were told C could not spend the night at the hospital.  Well, that wasn't true, and I realized the first moment I saw FL in recovery that I wasn't going anywhere.  We hadn't planned for clothes for C and myself, so that gave us a challenge when we decided to stay together as a family.  Especially when I got doused in urine in the middle of the night!  We were creative and flexible, though, and made it through just fine.

- I have had trouble getting close with one of my daughters.  This experience helped with that.

- When we needed something, we asked for it kindly.  When things didn't go as planned we were flexible and not grumpy about it.  It just made everything better. : )

- Though we definitely set our children up for success and gave lots of grace, we parented the same in the hospital as we would have at home.  I'm sure I made some mistakes!  : )  My girls and my husband give me lots of grace, too!

- We talked about this day in advance in simple language.  We do our best to always tell our children the truth ahead of time in simple language so that we can build their trust.  Our trust "bank account" was empty the day we met them and we try to make deposits when we can!  Having the simple "story" of what was going to happen helped C and FL connect things and realize that we were telling them about this for a long time.  It was a deposit in the trust bank account!

- That's all I can think of for now!  : )  If you're a family getting ready for cleft palate surgery, please feel free to comment with questions.  I'll try and answer.

Long Night, Good Morning

After a long night in a bad chair with two girls that didn't want to sleep...

We woke up at 4 am to a smiley, happy girl!

She's eating, drinking, playing, singing, talking, dancing and being sassy!

She's eaten eggs, applesauce, pudding, ground sausage and oatmeal.   She slept better than anyone else last night and is asking to wear barrettes and bows.  Flora Lin is proudly opening her mouth and showing everyone that her cleft is GONE (and that she has new socks)! : ). She's awesome!

AND.........    We're clear to GO HOME!!!

We're blessed!

Palate Surgery Recovery

After a very long time of waiting, FL was finally done with surgery!

It took even longer for them to find us a bed in a specific area of the hospital.   We were in recovery with her at 10 and got in our room around 2.   The staff has been very accommodating and friendly.   Everyone loves our girls (surprising, right?) and the overall experience has been very positive.  It's nice to be in a place where everyone expects children to be children.  I don't have to worry about C being too loud while we wait or putting her feet on the furniture, etc. Everything is designed for them, right down to colorful shapes and sparkles on the floor!

The picture above....  Goodness it is hard to look at now.  FL is so pale and miserable looking.  She was determined to play, though.  C was so happy to see that FL was ok and for us all to be together again.   She was also slap-happy, as she didn't sleep the night before, got up at 4 am and had missed her nap as well.

After a while, it was just too much.  She wanted to be awake, so she just watched us and watched C while she played.  I took a look at her mouth and told her that the doctor helped her and she was "all done" with her cleft!   I made a big deal out of it and how it looked (it really is amazing!) and told her "good job" which is a thumbs up sign in our family.  Above, she is signing " good job" - she really did do a great job!  I was amazed at her level of calm and that she still had her sense of humor even though it was right after surgery!

You may notice a barrette in her hair.   I took C's out and FL began searching for hers frantically.  I asked C to share, which she willingly did, and put it in FL's hair.  She was very happy!

C enjoyed hospital food, running around in her underware and television in bed.   To her, we were just in another hotel!  She is a princess no matter where she goes!

FL couldn't be kept down for long!  She and C and I had a great time playing with an ID sticker.  We got lots of laughs out of all of us!

During our adoption process, we were discouraged from getting two children at one time by more people than I expected.  Every day I am so glad I listened to God and not all of those people!  These two may fight like sisters but they love each other so much.  They provide support for each other in a quiet and beautiful way that I can't really describe.  God knew what he was doing when He brought them together in the same family!

FL heard all about C's adventures during the day in the wagon and wanted a ride, too!  After some chocolate pudding and motrin, we loaded up with the dollies and went for a ride to the nurses' station to ask for more chocolate pudding for FL and some vanilla pudding for C!

When I think of all that has happened to these two in their very short, little lives I am amazed at the wonderful, loving, funny and enjoyable children that they are.  They are two, very, very special little people.  These past three months have changed my life and caused me to grow in more ways than I ever thought possible.  They have NOT been easy, but looking back...  there just aren't words.

I love you, little ones.

All Done!

Doctor Charlotte would like to let you know...

That Flora Lin is all done with surgery!

Check In

We're here and checked in:

The wait was quick and the girls had fun playing.   C was a little nervous, but FL didn't seem to have much anxiety.

She liked her "dress" and C was a little jealous that she didn't get a special dress and bracelet.

Taking her down the hall and handing her over was really hard.  I'll never forget the look she gave me.

There were some tears on my part, but everyone else did ok.   C was upset by it.  Once I was able to talk to her about it and reassure her we would see FL when she was "all done" with her cleft and give her a big hug, she relaxed a little and was able to play some.   She said, "F'yin all done, BIIIIIIG hug!   I yuv you, F'yin.  Good job!"

Couldn't say it better myself.

Big Day Tomorrow!

Tomorrow is the big day!   We arrived in Birmingham at dinner time and were treated to a very nice meal at Sam's Aunt Sally's home.   She's put us up in her wonderful guest cottage and we are all settled in for the night!

It is spacious and has everything we need and more!

She filled up the kitchen with all kinds of good things!   Her granddaughters even made a sweet welcome sign out of sidewalk chalk!

It's so nice we might never want to leave!   If only we could bring the horses, dogs, cats and chickens...

The girls are doing well, though a little nervous about going to sleep in different place.  They're great kids and have just gone with the flow for the most part.

We are to arrive at the hospital at 5:45.   I assume that means we have the first spot!  The surgery should take about two hours, though there will be prep before and recovery after.

Please pray for:

All of us to be calm

For FL as she goes back to surgery with out us, during the surgery, awakens without us and endures this painful procedure.

For Charlotte as she has been struggling with things of her own.  Change in routine is hard for her.

For us as parents to have the wisdom to help both of our children during this time.

For our farm and those caring for it while we are away

Just pray for us!  : ) 

Thanks for being a part of our journey!

Cleft Palate Surgery Pre-Op Appointment

Our pre-op appointmentis in the books!  The girls were fantastic, as always and the appointment took way longer, as always.  It was poke-free, which I know makes FL very happy.  However, our appointment was at 11 and we saw the surgeon around 3.  : /  It seems that every appointment we go to in Birmingham takes much, MUCH longer than we anticipate, so I've learned to prepare, despite the reassurances that the next appointment will take no time.  Once again, we closed down the clinic for the day, but that's water under the bridge, so to speak, and I need to move on.

For those who may be walking the road of medical care for a cl/cp child, I will tell you some of the things I do that have really seemed to help us.

- Sam and I run through the whole day and plan out stops.  

- We stop at the same rest area/potty each time.

- Everything is packed the night before (I don't let the girls see me pack) and loaded into the car the day of.  Dollies, etc. are also loaded the day of. : )

- I pack toys and snacks that we don't normally use/have in addition to what we normally have.  Stickers, books, crayons/coloring books, lacing cards, special blankets for toys, Goldfish, Cheerios, gerber puffs, applesauce cups, fruit squeezy pouches, bananas, clemetines, etc.  Sometimes, we will have juice if we eat out.  We have dental issues, so I try to avoid acidic things.  I don't pack sugary foods because spikes and dips in blood sugar are not fun and don't help our moods.

- If it goes in the car, it has to be easy clean up.  Spills cause stress and we don't need any more stress.  Water only in the car, and dry snacks (apple slices would be an exception).  I choose snacks that make them happy. : )

- I pack plenty of food for Sam and myself.  If our blood sugar gets too low, then we can't be the patient parents that we need to be. : )

- I do my best not to pack too much.  Everything needs to fit in the diaper bag and one other reasonably sized bag.

- Be well rested, committed to the day and whatever changes will come up, have a good attitude and try and make this a positive experience.  When I go to these appoitments, I try and stay away from my phone.  I use it as time for holding my girls and building attachment.  We talk about everything, I try to engage them and we sing A LOT of songs in the car. : )  This time is 100% about them, their feeling and needs.

- Eat often. : )

- I do my best to use the same parenting methods in the home and outside the home.  That being said, I try and set my children up for success.  

- We don't talk about the actual doctor visit until the morning of.  I try and give them an explanation of what docotor we will see and what they will do.  For example, today I told them we would see Flora Lin's doctor who would help her with her cleft (we've talked about her cleft many, many times before this).  He would look at her ears and her cleft.  We are all done with Charlotte's docotr.  This is Flora Lin's doctor.  I briefly showed them what the docotor would do (I looked in and touched her ears, looked in her mouth and touched her lips).  As I talk to them I use signs that they know well.

- As each doctor comes in, I tell the child simply what they will be doing.  Sometimes, I let the doctor check my ears, etc. first if I think the child is about to loose it. At our first appointments, the girls were afraid, didn't trust us and communication was mroe of an issue.  As i've done the things mentioned each time, they are now more relaxed at appointments and the drive.

- Eat often. : )

- Hug, kiss and smile more than usual.

- Dress them in something comfortable, but that they like and is a little special.  Our girls love their cowgirl boots.  Right now, they are also into stockings, overalls, and things with pockets, buttons, zippers and bows.

- Find the fun.  We spent some time taking little walks and following a blue pattern in the floor.  We tried walking in different ways on the blue part.  We talk about the things in the waiting room, espeically the other children.  Babies, drinking bottles, little girls that also have special boots, men with hats on, etc.

- Rotate what you are doing often.  We quickly go through stickers, books, looking at pictures, eating and drinking.  Right now, going potty is also a big activity for us! ; )

- Bring sanitizing wipes, spray.  This gave me more peace of mind with chairs, tables, toilets, etc.  I wasable to say "no" less and worry less. : )

- Eat often. : )

- Even the best laid plans are upset.  Be as prepared as possible and leave as much margin as possible in your day.  We had an appointment at 11.  We saw the doctor at 3.  We stayed positive and upbeat for our girls and had enough to entertain and feed them to carry us through that time.

- Choose kindness towards your children and in front of your children.  You can't go wrong with kindness. : )

A long wait for all of us!

Sometimes I get in the picture!

FL saw the audiologist again, but her ear was still too clogged for them to determine how much she can hear out of it.   We also saw the ENT.   Tubes will be placed during surgery and her ears will get a good cleaning.  

I had a good talk with the speech therapist, and since she is doing so well cognitively with her communication I can relax and just be her mom instead of mom and therapist until we've been home about six months.  : ). After that, I will really start to pursue therapy for her.  We'll do little things here and there, but nothing big for now.

We met with the surgeon again and he assured us that her cleft was very "straightforward" and he didn't expect any complications.  It was a good meeting.

After that we closed down the anesthesia unit as their last patients.   We went through a Question answer session and recieved our instructions.  It still seems a little surreal at this point.

And that was our day at the hospital clinic!  On to more pictures!

She knows she's funny!  Look at her eyes!

Oh, silly Flora Lin!   Can you tell they don't get juice often?!

So so good!

And you know we had a dancing session in the exam room!  Here, Charlotte is reenacting scenes from Saturday Night Fever.  Flora Lin is doing the Funky Chicken. : )

It was a long day, but we made it!

You Can't Run Away on Pre-op Day!

 It's pre-op/ENT day for someone who's hiding...

But you can't run away!   

We'll bring your silly sister who's happy to come, though a little under the weather. : )

With your family and your cowgirl boots, you'll have all the courage to face the day and days ahead!

Prayers appreciated!   We're anticipating a quicker and poke-free appointment!

Cleft Surgery Appointment at Children's

Warning - lots of unnecessary pictures ahead!

We had our big appointment at Children's Hospital today.  Honestly, it involved a little bit of doctors and testing and A LOT of waiting.  This time, we waited in a big room with lots of other families.  You expect to see sick people when you visit a hospital and clinic, but it is such a different feeling when all of those sick people are children.  It makes you thankful for the health of others around you and your family's health.

The girls were good, though there was a time out or two today...  : )

First, FL went to audiology.  Since Sam is her favorite, he took her.  She did great, but there is fluid behind both ears, scarring in both and she has most likely suffered from multiple ear infections over her little life.  There is hearing loss, but they tested the bone and hopefully isn't permanent!  When she does have surgery, she will have tubes put into her ears as well.  We are thankful she can hear, though.  We saw another family get the news that their son might not have any hearing at all.  Another reminder that it could be so much worse for all of us!

These two girls missed their nap again today.  You can see how tired they are in their little faces!  Thankfully, I have tons of stickers!  We leave a trail where ever we go!

After the audiologist, we saw the speech therapist/pathologist.  Two came in and they just loved the girls and thought they were cute and amazing (which they are!).  They were glad to know that FL is signing up to three words together unprompted, talking in one to two words and singing.  They gave Sam and I some exercises to do with her to start to prepare her for her new palate and making more consonant sounds (like b and p).  Children without a palate don't know how to use something they've never had. This preparation might help her to bypass some speech therapy in the future. 

We thought we would also see an ENT and someone from the dental department, but we didn't.  Not sure as to why.  I really didn't have it all together today.   There are so many questions I thought I would get answers to and I didn't.  Truthfully, I don't even know what all of those questions are right now.  When the surgeon finally came in, the girls were slap happy, clingy, silly, short on attention and I had a really hard time focusing on what he was saying (even though Sam did a great job of trying to occupy them while the surgeon was explaining things).  Also, I was a little slap happy, clingy, silly and short on attention from having two full days of appointments and trying to make sure my children had the best possible experience with their physicians.

They understand how little these children need to be handled by others, so he didn't examine her other than looking at her cleft while she voluntarily kept her mouth open.  He was very nice and had a little fun with the girls while in the room.  He was also willing to bend hospital rules just a little and accidentally be in a picture that I was taking of FL.  I like people who are willing to bend the rules as does Flora Lin.  : )

He had a retractable name tag that FL enjoyed snapping!

This is one doctors appointment she felt she could handle!

He drew a picture and explained exactly what we would be doing, what it would look like and what it would and wouldn't change for her.  He also told us of some upcoming surgeries to expect and possible complications.  He did tell us that the muscle in FL's upper lip is not connected and hasn't been.  China did her surgery in two parts and because of that the muscle wasn't connected.  When she gets close to school age, we will probably do a lip revision and connect the muscle.  It doesn't bother her, but I feel that it is something that she will want done in the future.

FL will have a bone graft around the age of seven, and at that point the will close a little hole in her palate that they will have to leave since part of the gum line is missing.

He told us a few things to expect and a few things to prepare for.   I'd explain it all here, but I haven't quite processed everything myself! : ). I will tell you that our follow up/pre-op/ENT visit is in February and FL's surgery will be early March.

And that was that!  All done!

Once the girls realized no blood was going to be drawn, they decided to celebrate by square dancing:

Slap happy square dancing!

Delirious do-si-do!

Swing your partner!

Ok, don't swing them that much! ; )

Square dancing was too tame, so they decided disco was the way to go:

Then line dancing was in order...

Sprinkler!!!!

Whew! All that dancing wears a girl out (don't worry - I was signing and saying "yucky, YUCKY!  Stand up!")!!!

They moved on to their new favorite activity... Pretending they are crying.  It is about as fun for parents as it sounds.  Sam told them we were "all done crying" (or frying, as C says).   FL was signing "more" as was C.   : )

Thank goodness for our Dollies, Salvador and Pardon! (Yes, that's a sticker on FL's hiney)

But then the dollies had to potty and needed to be cleaned up!

Someone's Dolly pooped!

Y'all, even the Dollies were tired after these two long days...

And all four of our sweet little dolls fell asleep quickly after a late lunch.  C shushed FL and told her "Quiet!  Night-night!"   The next second she fell asleep!

FL defied her sister and was not quiet, but only lasted a few minutes longer.

And now it is time for me to sleep!

I'm thankful for a good day and a sweet, healthy family!  Looking forward to a schedule and naptime tomorrow!

Thank you for your prayers!