We're now 2+ weeks out from Bailey's most recent surgery - an adenoidectomy and a lip/nasal revision.
It's gone basically exactly as we expected.
Our only real instructions upon discharge were for the lip and nasal revision:
antibiotics for 7 days,
triple antibiotic cream twice a day to her lip incision area,
moistening nasal spray 6-8 times per day,
no swimming,
no blowing of her nose.
She had very minimal pain. She actually never once complained of pain, even the day of the surgery itself. However the second night she had a massive meltdown around bedtime, which is totally out of character for Bailey, and we realized we should have been at least giving her some Tylenol even if she denied pain. For the next few days we did Tylenol about every 5 hours or so, and that prevented it from catching up to her. The main struggle was the nasal spray. You would have thought we were attempting an amputation every time we did it. And we did it 8 times a day. After a few days she finally just resigned herself to it, but it was rough there for awhile.
She had a follow-up appointment last week at 8 days post-op. Her throat looks great; the ENT was pleased. The plastic surgery follow-up was a bit harder on Bailey. Last time around she had a really hard time having the nasal stent removed, and this visit was no exception. It took five of us to hold her down so that he could cut ONE stitch. The other side actually slid right out with ease. Bailey can credit that to her younger sister since Avery accidentally smacked Bailey hard in the nose and not only popped the suture but caused a massive nose bleed which gave her parents quite a fright.
Our plastic surgeon Dr. Miller thought everything was looking really good and wants to see her back in about three months.
Since then, things are back to normal. Bailey is only restricted in one area - nose blowing. He asked her to not blow her nose for another month or so. Don't ask me the reason for that because I have no idea.
We went swimming for the first time today, and to say Bailey was ecstatic is an understatement.
Also, the biggest perk of everything, is that Bailey's sleep apnea and overall sleep appears to be dramatically improved. Since those stents are removed, she can breathe through her nose alone. She isn't mouth breathing at night, and her bed remains completely made come morning time. Before surgery she was so restless that she was turning in her sleep sometimes every 10 or so seconds, and her bed was absolutely destroyed every single morning. So the fact that she is getting a restful sleep is HUGE for her.
We're very happy with how well surgery went and that we were able to get everything done this summer well before school starts.
Showing posts with label cleft. Show all posts
Showing posts with label cleft. Show all posts
Tuesday, August 2, 2016
Tuesday, July 19, 2016
Cleft Surgery #4
I know I don't write much about Bailey concerning her cleft (or really about anything at all lately - yeah, sorry 'bout that) but I wanted to make a point to write about it tonight.
You see, when I was a scared, pregnant mom-to-be carrying a baby already diagnosed with a cleft, I googled.
Yes, yes.
I know that is what you're specifically told NOT to do, but really, does anyone actually heed that advice?
Anyway, here I was. At home. Sitting in my basement alone. Staring at the computer screen. I tried every search term; I visited all kinds of different sites. Some sites were good (the BabyCenter cleft support group comes to mind), others were not. I immersed and overwhelmed myself in all things cleft, reading about far too many things I shouldn't have been worried about yet. Looking up statistics. Looking at hundreds of pictures. Worrying myself silly.
Eventually I stopped that. Long before she was born I got myself in order, we met our future plastic surgeon, and I focused on the fact that we were having a baby. I got the worry and freaking-out out of the way so I could move on.
But, I still clearly remember how extremely comforting it was when a coworker linked me up with a friend of hers who had just given birth to a little boy with a cleft lip and palate - exactly what Bailey ended up having. Yay, finally! Someone to give me real information! - not something more akin to a medical pamphlet.
So while this blog rarely focuses on Bailey's cleft, I also notice that I get traffic from people using keywords like "cleft blog" or "cleft palate information."
And very likely that is a future or current cleft-parent looking for some validation or reassurance or maybe just some real talk. So that's why I'm writing tonight. Hopefully this gives some insight into what comes after the special bottles and first two surgeries.
So Bailey has had 3 other cleft surgeries up to this point (lip repair, palate repair, nose/lip revision) as well as 5 sets of ear tubes. (For more details, click here.)
This surgery was planned after she had a sleep study completed in May. Bailey has always snored, but her restlessness and complete destruction of her bed at night finally caused us to dig deeper. The study revealed she had sleep apnea, which we were already pretty sure of to begin with.
It was recommended by the ENT to remove her tonsils to hopefully open up her airway. And since our plastic surgeon had mentioned doing a touch-up to her nose and lip either this year or next, we opted to schedule them together. The ordering ENT was not able to coordinate schedules with our plastic surgeon, so we went with another ENT associate.
Bailey was the first surgery scheduled. They took her back on time, and we settled in to wait. About 30 minutes later, our ENT came to our room. Since he wasn't the one who ordered the procedure, he wanted to know exactly why her tonsils were being removed even though they were not enlarged. We talked about the sleep study and her trouble breathing through her nose.
Then the plastic surgeon walks in.
(Very unusual to have both operating doctors leave and come chat with the parents half-way through. I'm pretty sure our nurse had a mild panic attack!)
We talked over more of what they were seeing in the OR, and we agreed to leave the tonsils and check to see if the adenoids were enlarged and needed removed. Turns out they did. Our doctor told us they were some of the biggest he's seen. They were 100% blocking her from breathing through her nose.
Not having her tonsils removed was definitely a change in plans, but a positive one. In cleft kids, leaving the tonsils in place for as long as possible is advantageous because it assists the palate in some ways, especially when it comes to speech and swallowing food without leaking. So while many times tonsils and adenoids are removed together, we're glad they didn't have to be in Bailey's case.
For his part our plastic surgeon shaved off scar tissue on the underside of Bailey's lip, shaved down the scar between her nose and lip, and lifted up the cartilage of her right nostril after removing more scar tissue. She has nasal stents in both nostrils to help them hold their shape.
All I can say is that our girl did awesome!
I don't know if I can adequately describe this child's pain tolerance.
One time.
She denied any pain the rest of the day.
We've been keeping her on Tylenol, and she has to use nasal spray 6-8 times a day. But she can eat normal foods and is back to all normal activities (except swimming).
It will probably be a week or more until we can tell if the adenoidectomy helped her breathing and sleeping. It would normally be about 4 days, but I'm guessing the facial/nasal swelling might prolong things a bit. We're very hopeful that she will see dramatic improvement in her breathing and be able to get much higher quality sleep.
And to all our friends and family members, we appreciate all the prayers you have said for our girl this week. She felt every one of them! ♥
You see, when I was a scared, pregnant mom-to-be carrying a baby already diagnosed with a cleft, I googled.
Yes, yes.
I know that is what you're specifically told NOT to do, but really, does anyone actually heed that advice?
Anyway, here I was. At home. Sitting in my basement alone. Staring at the computer screen. I tried every search term; I visited all kinds of different sites. Some sites were good (the BabyCenter cleft support group comes to mind), others were not. I immersed and overwhelmed myself in all things cleft, reading about far too many things I shouldn't have been worried about yet. Looking up statistics. Looking at hundreds of pictures. Worrying myself silly.
Eventually I stopped that. Long before she was born I got myself in order, we met our future plastic surgeon, and I focused on the fact that we were having a baby. I got the worry and freaking-out out of the way so I could move on.
But, I still clearly remember how extremely comforting it was when a coworker linked me up with a friend of hers who had just given birth to a little boy with a cleft lip and palate - exactly what Bailey ended up having. Yay, finally! Someone to give me real information! - not something more akin to a medical pamphlet.
So while this blog rarely focuses on Bailey's cleft, I also notice that I get traffic from people using keywords like "cleft blog" or "cleft palate information."
And very likely that is a future or current cleft-parent looking for some validation or reassurance or maybe just some real talk. So that's why I'm writing tonight. Hopefully this gives some insight into what comes after the special bottles and first two surgeries.
So Bailey has had 3 other cleft surgeries up to this point (lip repair, palate repair, nose/lip revision) as well as 5 sets of ear tubes. (For more details, click here.)
This surgery was planned after she had a sleep study completed in May. Bailey has always snored, but her restlessness and complete destruction of her bed at night finally caused us to dig deeper. The study revealed she had sleep apnea, which we were already pretty sure of to begin with.
It was recommended by the ENT to remove her tonsils to hopefully open up her airway. And since our plastic surgeon had mentioned doing a touch-up to her nose and lip either this year or next, we opted to schedule them together. The ordering ENT was not able to coordinate schedules with our plastic surgeon, so we went with another ENT associate.
Bailey was the first surgery scheduled. They took her back on time, and we settled in to wait. About 30 minutes later, our ENT came to our room. Since he wasn't the one who ordered the procedure, he wanted to know exactly why her tonsils were being removed even though they were not enlarged. We talked about the sleep study and her trouble breathing through her nose.
Then the plastic surgeon walks in.
(Very unusual to have both operating doctors leave and come chat with the parents half-way through. I'm pretty sure our nurse had a mild panic attack!)
We talked over more of what they were seeing in the OR, and we agreed to leave the tonsils and check to see if the adenoids were enlarged and needed removed. Turns out they did. Our doctor told us they were some of the biggest he's seen. They were 100% blocking her from breathing through her nose.
Not having her tonsils removed was definitely a change in plans, but a positive one. In cleft kids, leaving the tonsils in place for as long as possible is advantageous because it assists the palate in some ways, especially when it comes to speech and swallowing food without leaking. So while many times tonsils and adenoids are removed together, we're glad they didn't have to be in Bailey's case.
For his part our plastic surgeon shaved off scar tissue on the underside of Bailey's lip, shaved down the scar between her nose and lip, and lifted up the cartilage of her right nostril after removing more scar tissue. She has nasal stents in both nostrils to help them hold their shape.
All I can say is that our girl did awesome!
I don't know if I can adequately describe this child's pain tolerance.
It's high.
The highest she rated her pain the entire day of surgery was a 2. One time.
She denied any pain the rest of the day.
We've been keeping her on Tylenol, and she has to use nasal spray 6-8 times a day. But she can eat normal foods and is back to all normal activities (except swimming).
It will probably be a week or more until we can tell if the adenoidectomy helped her breathing and sleeping. It would normally be about 4 days, but I'm guessing the facial/nasal swelling might prolong things a bit. We're very hopeful that she will see dramatic improvement in her breathing and be able to get much higher quality sleep.
And to all our friends and family members, we appreciate all the prayers you have said for our girl this week. She felt every one of them! ♥
Thursday, March 20, 2014
Trust me, I know what beautiful is.
I started this blog a few years ago after toying with the idea for months. My goal was to use the blog to post photos and stories of our kids and ourselves - an easy way to help distant friends and family feel involved in our daily lives.
A by-product of that initial vision has been cleft-awareness, even if only on a very small scale.
I have quite a few people that find my blog through internet searches like "cleft lip and palate" or "expecting a baby with a cleft."
I think every shocked, expectant cleft parent types those words into a search engine.
My heart goes out to them.
I remember doing those searches.
And I remember some of the results I wish I hadn't found.
And it never will be.
I guarantee it.
Because when it comes down to it, Bailey is more than a cleft-affected kid.
She is our daughter.
She is funny.
She is smart.
She is caring.
She is helpful.
She is exuberant.
She is beautiful.
Oh, and she happens to have a cleft.
And because of Bailey's cleft we were automatically joined into a small sub-group of people: cleft parents. I've met and formed relationships with people I would have otherwise never known - all because we have a cleft in common. I even email back and forth with an adult woman with a cleft. She gives me the viewpoint that I wouldn't glimpse into otherwise.
I like being a resource or a touch-stone to others experiencing the same things we have already gone through. Clearly I am not an expert, but I have been-there-done-that with a lot of things cleft-parent related.
I like when people - family, friends, strangers on the street, internet strangers - ask me questions and show they are interested in knowing more. I like to share the knowledge I've gleaned from personal experience.
But there is a definite difference between asking questions to learn more and asking questions to challenge the choices we have made for our child.
Let me be extremely clear:
I love my daughter.
I've thought she was beautiful from the second I laid eyes on her in that operating room.
My heart hurt knowing that we had to lose her sweet "first" smile at 10 weeks old.
And it ached afterward seeing her in pain.
It's ached with each and every surgery.
And I know it will ache thousands of times more in the upcoming years, over all sorts of normal childhood things and a few extra because of issues related to her cleft.
But never have our choices for Bailey been guided by superficial thoughts to "make her prettier" or because we feel she isn't good enough as she is right now. And to say or infer that to me is not only inappropriate, it's offensive.
We don't look at Bailey and notice her cleft.
Her cleft barely crosses my mind, and it usually only does in fleeting moments, like when I am brushing her "special tooth" or notice she has chocolate pudding hiding out in her right nostril.
It's okay for people to have questions. I expect that. I don't expect people to understand it all; I knew nothing about clefts before Bailey was diagnosed with one. I am happy to explain why Bailey has to have more surgeries and dental work in the future.
So I should forgo dental treatments and let her teeth continue to be ground down due to her inappropriate bite?
Should we say screw it and let her breathing be affected due to her nasal shape as she grows older?
Should we just not utilize the AMAZING health care coverage my husband receives as a benefit through his job?
Surgeries aren't being done just for looks. Surgeries are needed for function and to prevent problems with biting, chewing, swallowing, talking, breathing...
So insinuating that Bailey's future surgeries are less about necessity and more about my own tainted view of real beauty is just not even close to reality.
Look at this picture and tell me our daughter isn't beautiful.
Because for those of us who truly know and love Bailey,
we don't say, "She is beautiful even with her cleft."
A by-product of that initial vision has been cleft-awareness, even if only on a very small scale.
I think every shocked, expectant cleft parent types those words into a search engine.
My heart goes out to them.
I remember doing those searches.
And I remember some of the results I wish I hadn't found.
When people stumble upon my blog, I am glad. I hope they can see from my blog that Bailey's cleft is not our primary focus - on the blog or otherwise. I have general information about clefts with a few helpful links in the Cleft Info tab at the top of my blog, along with an overview of Bailey's story, surgery, and future concerns. I write posts from time to time about what is going on in regards to her cleft: her yearly cleft team visits, trips to the dentist, questions she asks as she notices some of her differences. Those posts help explain in detail what exactly we learn at each visit and give a general timeline for what to expect in each next step.
What is not found on my blog?
A sense that Bailey's cleft is an overwhelming part of our lives.
And it never will be.
I guarantee it.
Because when it comes down to it, Bailey is more than a cleft-affected kid.
She is our daughter.
She is funny.
She is smart.
She is caring.
She is helpful.
She is exuberant.
She is beautiful.
Oh, and she happens to have a cleft.
And because of Bailey's cleft we were automatically joined into a small sub-group of people: cleft parents. I've met and formed relationships with people I would have otherwise never known - all because we have a cleft in common. I even email back and forth with an adult woman with a cleft. She gives me the viewpoint that I wouldn't glimpse into otherwise.
I like being a resource or a touch-stone to others experiencing the same things we have already gone through. Clearly I am not an expert, but I have been-there-done-that with a lot of things cleft-parent related.
I like when people - family, friends, strangers on the street, internet strangers - ask me questions and show they are interested in knowing more. I like to share the knowledge I've gleaned from personal experience.
But there is a definite difference between asking questions to learn more and asking questions to challenge the choices we have made for our child.
Let me be extremely clear:
I love my daughter.
I've thought she was beautiful from the second I laid eyes on her in that operating room.
My heart hurt knowing that we had to lose her sweet "first" smile at 10 weeks old.
And it ached afterward seeing her in pain.
It's ached with each and every surgery.
And I know it will ache thousands of times more in the upcoming years, over all sorts of normal childhood things and a few extra because of issues related to her cleft.
But never have our choices for Bailey been guided by superficial thoughts to "make her prettier" or because we feel she isn't good enough as she is right now. And to say or infer that to me is not only inappropriate, it's offensive.
We don't look at Bailey and notice her cleft.
Her cleft barely crosses my mind, and it usually only does in fleeting moments, like when I am brushing her "special tooth" or notice she has chocolate pudding hiding out in her right nostril.
Vanity is not guiding our decisions.
Just like with our other children, we make decisions for her based on what is best for her. And we make decisions regarding her cleft-related care with her team of specialty doctors, dentists, and orthodontists. Ya know, experts. And I feel very strongly that they have our daughter's best interests in mind as well.It's okay for people to have questions. I expect that. I don't expect people to understand it all; I knew nothing about clefts before Bailey was diagnosed with one. I am happy to explain why Bailey has to have more surgeries and dental work in the future.
But suggestions that we "think long and hard about the motivation for her surgeries" and "start embracing Bailey and her differences" are absolute bullshit.
Should we say screw it and let her breathing be affected due to her nasal shape as she grows older?
Should we just not utilize the AMAZING health care coverage my husband receives as a benefit through his job?
Surgeries aren't being done just for looks. Surgeries are needed for function and to prevent problems with biting, chewing, swallowing, talking, breathing...
So insinuating that Bailey's future surgeries are less about necessity and more about my own tainted view of real beauty is just not even close to reality.
Look at this picture and tell me our daughter isn't beautiful.
Because for those of us who truly know and love Bailey,
we don't say, "She is beautiful even with her cleft."
We just say, "She is beautiful."
Thursday, March 6, 2014
Cleft Team Visit 2014
This past Monday we loaded up the car and the kids and drove to Omaha. Tuesday was Bailey's yearly cleft team visit. Just like last year we decided to go down the day before and make a small trip out of it.
We hadn't even reached the outskirts of Omaha yet when Graham blessed us all with the sounds (and smells) of his apparent motion sickness. This hasn't ever been a problem we have had to deal with in the past, but he proceeded to get sick not only once, but twice - vomiting again on Tuesday morning. Do they make motion sickness medication for one year-olds?
We might be needing some.
After cleaning up the vom as best as I possibly could using Casey's napkins and a cup of water from Pepperjax, we found a Target and bought some Febreze and some upholstery cleaner. Total waste of money as it did nothing for the smell or stains whatsoever. Hey, we tried. But it was clear that the Vomit Van title was here to stay.
We ended up spending a few hours in the afternoon at BounceU. Not only did they have tons of inflatables, there were also little cars for Graham to ride in and balls for him to throw. That's kind of his favorite thing right now, besides climbing on tables/desks/windowsills of course. Aunt Fe took the afternoon off and hung out with us.
Unfortunately I think Jared and I were more exhausted from this afternoon outing than any of the kids were. I loved these things as a kid. I would have thought I had died and gone to heaven to have a whole afternoon of unrestricted bouncing. In that spirit, I was in there jumping around like crazy with the kids. After nearly peeing my pants three separate times, I realized that small jumps are the key. Moms, I know you're feelin' me. Damn you, childbirth, and your random long-lasting side effects!
That afternoon we checked into our hotel and swam with the kids. We ordered some pizza for supper and hung out in the room. All three of the kids and Jared were passed out by 8 pm. Talk about a rowdy party crowd... geesh.
Our cleft team appointment was at 8:15 the next morning. She sees a ton of people at these visits and it takes the entire morning. In the meantime, Graham and Avery went and made sure their handprints were on every single window in the place.
Since Bailey had surgery last August, that is likely to be her last surgery until the cleft in her gumline is filled around age 7. So most of our visit this time involved finding out info regarding the next steps in the cleft process. She gets a break from any procedures for the next 2-3 years, but decisions will need to be made in order to prepare for that surgery.
Since Bailey had surgery last August, that is likely to be her last surgery until the cleft in her gumline is filled around age 7. So most of our visit this time involved finding out info regarding the next steps in the cleft process. She gets a break from any procedures for the next 2-3 years, but decisions will need to be made in order to prepare for that surgery.
A cleft of the palate also makes a cleft in the child's gumline, usually resulting in some change to their teeth - either giving them too many teeth (weird I know) or not enough (which is Bailey's case.) And as they start getting in their permanent adult teeth, cleft kids lack healthy bone for the teeth to erupt in to. This is why she will need a bone graft to fill in that site. With healthy bone filling in this gap, her adult teeth stand a good chance of remaining in place. She doesn't have an adult tooth in the cleft space, so that will be addressed much later on down the line. (Very likely she will need a dental implant, but that isn't usually possible until she is around 18 years old.)
When the time comes, there are two options to fill in the gumline cleft:
Option 1 - Harvested bone from her hip bone.
This is what was originally explained to us when she was born. We have been told from many different doctors that this will be the most painful surgery she will likely ever have.
Option 2 - Synthetic bone that is made in a lab.
When Bailey had her first cleft visit, this was mentioned in passing as "a new technology some doctors are utilizing." Now four years later, Bailey's dental surgeon used synthetic bone in roughly 50% of these procedures this past year. The technology is improving, so we can only imagine it will continue to do so in the next few years until it is Bailey's turn.
So obviously synthetic bone is far easier as far as patient involvement and pain, but we will only know when the times comes which option is the better choice for Bailey's particular cleft.
In the meantime - about a year before the surgery - Bailey will need to utilize a palate expander. It will help shape her mouth into the correct shape. (Cleft kids' mouths essentially cave in on themselves due to the incomplete palate, resulting in an incorrect shape and problems with overbite/underbite.) The expansion itself only takes a month or two, but she will need to wear it for approximately a year to maintain the correct shape. She will also need braces somewhere in this mess of mouth/teeth procedures. Likely she will have braces for many many years and maybe even multiple times.
And while on the subject of teeth, the dentist portion of the afternoon went off without a hitch. Both girls were in outstanding moods. They did great while getting their teeth cleaned and the dentist praised their efforts at tooth brushing. It helps that they can zone out and watch some 'toons on the ceiling throughout all of it.
It also helps that we love their dentist. I got the recommendation from a fellow cleft mom in Omaha a few years back, and I am so glad I did! I can't speak highly enough of the place.
(Click on the "Cleft info" tab at the top to check out all of Bailey's cleft related care providers.)
The take-away from our visit is that we have some downtime now.
Before next year's visit, I will need to contact orthodontists in our area and determine who will be the best fit for us. It will be extremely important that they can work closely together with our dentist and cleft team to follow her plan of care exactly. The next step is all about timing: monitoring the permanent teeth, monitoring the palate expansion, choosing the right time to perform the bone graft.
But before all that craziness starts, we are grateful for a year or two of surgery-free time. I am not looking forward to those very frequent trips to the orthodontist. I have a feeling that I will all-too-soon know just how my mom felt all those years driving over an hour round-trip for a five minute appointment.... (Thanks, Mom!)
Before next year's visit, I will need to contact orthodontists in our area and determine who will be the best fit for us. It will be extremely important that they can work closely together with our dentist and cleft team to follow her plan of care exactly. The next step is all about timing: monitoring the permanent teeth, monitoring the palate expansion, choosing the right time to perform the bone graft.
But before all that craziness starts, we are grateful for a year or two of surgery-free time. I am not looking forward to those very frequent trips to the orthodontist. I have a feeling that I will all-too-soon know just how my mom felt all those years driving over an hour round-trip for a five minute appointment.... (Thanks, Mom!)
Wednesday, February 19, 2014
4 years ago
Last night I was getting ready for bed and I happened to glance at the clock.
10:25
At almost that exact moment four years ago, I was jumping out of bed in surprise, scaring the daylights out of my husband, as my water broke everywhere. And I do mean everywhere.
It was the most surreal experience of my life.
What? Now? It's too early! Is this really happening?!
We weren't expecting to meet our first born for another three weeks.
As with any new parents, we were anxious to lay eyes on our baby.
Were we having a boy or girl?
What would he or she look like?
We were anxious to know if he or she was okay.
And along with those normal curiosities, we also had other questions, questions pertaining to our baby's cleft diagnosis as well as the fact that my due date was exactly 4 weeks away.
Bailey Marie was born in the wee hours of February 19th and all our questions were answered.
We had a baby girl.
She had big blue eyes and, according to my family, her daddy's forehead.
She was healthy.
She had a cleft palate as well as lip.
She weighed over 7 lbs at 36 weeks - no concerns there!
I didn't get those precious first moments to snuggle her or snap a just-born photo. I got a quick glance as the nurses whisked her away to the NICU.
And when I finally got to hold her almost 18 hours later,
I couldn't believe how much I could love a person I had just met.
.jpg)
.jpg)
Or how that love could just keep growing and growing.
But it does.
Past birthdays:
Bailey turns 3
Bailey turns 2
10:25
At almost that exact moment four years ago, I was jumping out of bed in surprise, scaring the daylights out of my husband, as my water broke everywhere. And I do mean everywhere.
It was the most surreal experience of my life.
What? Now? It's too early! Is this really happening?!
We weren't expecting to meet our first born for another three weeks.
As with any new parents, we were anxious to lay eyes on our baby.
Were we having a boy or girl?
What would he or she look like?
We were anxious to know if he or she was okay.
And along with those normal curiosities, we also had other questions, questions pertaining to our baby's cleft diagnosis as well as the fact that my due date was exactly 4 weeks away.
Bailey Marie was born in the wee hours of February 19th and all our questions were answered.
We had a baby girl.
She had big blue eyes and, according to my family, her daddy's forehead.
She was healthy.
She had a cleft palate as well as lip.
She weighed over 7 lbs at 36 weeks - no concerns there!
I didn't get those precious first moments to snuggle her or snap a just-born photo. I got a quick glance as the nurses whisked her away to the NICU.
And when I finally got to hold her almost 18 hours later,
I couldn't believe how much I could love a person I had just met.
Or how that love could just keep growing and growing.
But it does.
Happy 4th Birthday, sweet Bailey Boo!
Past birthdays:
Bailey turns 3
Bailey turns 2
Friday, October 4, 2013
the first one
Today, a photo in honor of World Smile Day.
I know, I know... There is a stupid day for anything you can possibly imagine.
But this particular day made me want to share the special little smile we had for such a small amount of time.
Bailey Marie
I know, I know... There is a stupid day for anything you can possibly imagine.
But this particular day made me want to share the special little smile we had for such a small amount of time.
Bailey Marie
2 months old
with the smile we knew and loved first.
Friday, September 27, 2013
8 weeks out
It has now been 2 months since Bailey's latest surgery - a lip and nasal revision.
The first shot isn't her best photo, but it is a good view of her nose and lip without her hiding her face from the camera or throwing her dress over her head.
Which by the way are all typical Bailey reactions to the camera.
The second photo was obtained by bribing her with fruit snacks if she would smile for the camera.
Worked like a dream.
The main point of the surgery was to correct the right side of her nose by making it less wide and less flat. It appears much more typical nose-like now, at least to my eyes. They also worked on the shape of her upper lip to make the right side more symmetrical to the left.
Right now her scar looks pretty red. In the above picture, directly under her nostril is red from where the stitches were from the nasal portion of the surgery. All of this will fade over time.
Per orders from her plastic surgeon, we are rubbing her scar multiple times a day. This {hopefully} will prevent it from scarring up even bigger over time. The idea is that the rubbing will break up some of the scar formation, although from everything I have read, the jury is still out on its true effectiveness. We also rub Mederma on the scar site. Who knows whether that actually makes any difference or not, but Bailey likes the smell of it so she actually allows us to rub the scar with minimal whining.
We are happy with the results. A lot of her "cosmetic" surgeries are going to be small tweaks here and there. And while most people might not even notice a change, hopefully when added together over time these surgeries will help Bailey achieve the best final result possible.
I thought I would try my hand at a little Before & After photo.
Please bear with me as this is my first attempt at Photoshopping anything ever. I would have loved a nice little border action or some labeling of "before" and "after" but even doing this simple set-up pushed the boundaries of my Photoshop knowledge. (Thank you Google!)
The first shot isn't her best photo, but it is a good view of her nose and lip without her hiding her face from the camera or throwing her dress over her head.
Which by the way are all typical Bailey reactions to the camera.
The second photo was obtained by bribing her with fruit snacks if she would smile for the camera.
Worked like a dream.
The main point of the surgery was to correct the right side of her nose by making it less wide and less flat. It appears much more typical nose-like now, at least to my eyes. They also worked on the shape of her upper lip to make the right side more symmetrical to the left.
Right now her scar looks pretty red. In the above picture, directly under her nostril is red from where the stitches were from the nasal portion of the surgery. All of this will fade over time.
Per orders from her plastic surgeon, we are rubbing her scar multiple times a day. This {hopefully} will prevent it from scarring up even bigger over time. The idea is that the rubbing will break up some of the scar formation, although from everything I have read, the jury is still out on its true effectiveness. We also rub Mederma on the scar site. Who knows whether that actually makes any difference or not, but Bailey likes the smell of it so she actually allows us to rub the scar with minimal whining.
We are happy with the results. A lot of her "cosmetic" surgeries are going to be small tweaks here and there. And while most people might not even notice a change, hopefully when added together over time these surgeries will help Bailey achieve the best final result possible.
Tuesday, September 3, 2013
recap
The past 10 days or so have flown by in a {sort of} organized chaos.
First things first.
Bailey. Preschool.
She loves it. Or at least I think she does. It's hard to tell.
Jared picked her up that first day, and I was all about it as soon as she walked in the door.
How was school?
Did you have fun?
What did you learn?
Who did you play with?
What are your new friends' names?
She gave me a look that said "Really, Mom? Please." without saying a word. I pressed her a little and she acted all nonchalant, like she had done this first-day-of-school thing a million times, and said, "I drove a car and cooked."
She walked off. End of story.
*sigh* The school-time apathy has started...
Other events for the week:
Cathy (Jared's madre) came to visit for a few days. She actually drove a U-Haul out with stuff from Jared's grandpa since his house just sold. We spent a hot afternoon moving some furniture into our breezeway - aka the room with (I kid you not) SEVEN entrances. It is a decorating/arranging nightmare. Jared's grandpa had a nice pull-out couch that looks really nice in the space. It helped define the room a bit to have some decent furniture in it. It had become a catch-all over the summer. And it is so hard to have any sort of flow to a room that has 6 doors and a basement staircase in it!
It was SO HOT this past week. We literally just hid indoors. I am all for playing outside. but I am not going to even pretend to care about sitting outside watching the kids when it is over 100º before factoring in humidity. I know Cathy (and her hair) thank me for staying indoors.
This past Friday we all loaded up and went to Omaha for Bailey's follow-up appointment. She didn't want to go, especially since last time she had to be held down by three people to get her stitches out. Hello, traumatic.
Jared and I assured her this was only an appointment to look. The doctor was only going to shine his flashlight and take pictures.
And he found a remaining suture.
It took a full five minutes to calm her down. And believe me when I say that she was flat-out pissed at everyone for the rest of the day.
We went shopping for new clothes with Grandma Cathy and even looking at new dresses did nothing to lift her spirits. She was just plain insolent all day long.
After an afternoon of fun shopping (despite the temps in the 100s), we spent the night in a hotel (Holla! State rate!) and the kids got to swim. We actually got an amazing night of sleep. Little G man sacked out by 8:30 or so and slept for 12 hours. Beyond glorious. We spent the next day eating more food than we should, shopping more, taking my kids to the Children's Museum {where they swapped tons of germs with other little grubby kids}, and seeing my sister Fe's new house. By the time we dropped Cathy off at the airport that evening, we were all spent and ready to collapse in bed.
Last week I started watching two other children, Jace and Mia.
Jace is a 2 year-old little boy only 4 days older than Avery, and Mia is not even 2 months-old yet. Add them into the mix with my three and you have a full day, believe me!
Jace has been a total sweetie and plays so well with the girls, even though they try their best to boss him around. Mia is so tiny! We are still figuring each other out, especially since she is a breastfed baby and would definitely prefer just having her mommy around. It was extremely helpful to have Cathy here the first two days since this is new for all of us. She could hold Mia while I prepared lunch or break up a fight over blocks while I fed Graham.
Today was a longer day with the kids and all went well. Graham definitely doesn't appreciate having to share his mom. Today while I was feeding Mia, he had his first tantrum - throwing himself down on the floor and crying. Multiple times. He is all of 9 months-old. Seriously, kid?? It was so impressive I actually got it recorded on my phone. (Now if only my phone wasn't from 1952 so I could upload it onto this site...)
And with all this stuff going on, each of us has a cold now too.
And sore throats.
And horrible coughs.
I really should be in bed at this point. So on that note, goodnight!
First things first.
Bailey. Preschool.
She loves it. Or at least I think she does. It's hard to tell.
Jared picked her up that first day, and I was all about it as soon as she walked in the door.
How was school?
Did you have fun?
What did you learn?
Who did you play with?
What are your new friends' names?
She gave me a look that said "Really, Mom? Please." without saying a word. I pressed her a little and she acted all nonchalant, like she had done this first-day-of-school thing a million times, and said, "I drove a car and cooked."
She walked off. End of story.
*sigh* The school-time apathy has started...
Next up: the bus.
She rides for the first time on Thursday. She is beyond pumped. Hopefully she is just as excited when the times comes to actually ride it. I will take some tears; I am just hoping she doesn't hold onto a fence post screaming bloody murder like my sister Justy did when she was forced to ride the bus at age five.Other events for the week:
Cathy (Jared's madre) came to visit for a few days. She actually drove a U-Haul out with stuff from Jared's grandpa since his house just sold. We spent a hot afternoon moving some furniture into our breezeway - aka the room with (I kid you not) SEVEN entrances. It is a decorating/arranging nightmare. Jared's grandpa had a nice pull-out couch that looks really nice in the space. It helped define the room a bit to have some decent furniture in it. It had become a catch-all over the summer. And it is so hard to have any sort of flow to a room that has 6 doors and a basement staircase in it!
It was SO HOT this past week. We literally just hid indoors. I am all for playing outside. but I am not going to even pretend to care about sitting outside watching the kids when it is over 100º before factoring in humidity. I know Cathy (and her hair) thank me for staying indoors.
This past Friday we all loaded up and went to Omaha for Bailey's follow-up appointment. She didn't want to go, especially since last time she had to be held down by three people to get her stitches out. Hello, traumatic.
Jared and I assured her this was only an appointment to look. The doctor was only going to shine his flashlight and take pictures.
Well...
We suck.
Dr. Miller (Bailey's plastic surgeon) did shine his flashlight. And he found a remaining suture.
Game over.
The screaming began in earnest and I felt like the world's worst parent since I had told her we wouldn't be doing anything that hurt. I had to bodily lay on her to get her to stop trying to kick the doctor in the face with her shoe while he was wielding sharp little scissors near her face. In reality the suture was on the outside of her nose and it took him less than 1 second to get it out, but the experience of it all was traumatic. Again.It took a full five minutes to calm her down. And believe me when I say that she was flat-out pissed at everyone for the rest of the day.
We went shopping for new clothes with Grandma Cathy and even looking at new dresses did nothing to lift her spirits. She was just plain insolent all day long.
After an afternoon of fun shopping (despite the temps in the 100s), we spent the night in a hotel (Holla! State rate!) and the kids got to swim. We actually got an amazing night of sleep. Little G man sacked out by 8:30 or so and slept for 12 hours. Beyond glorious. We spent the next day eating more food than we should, shopping more, taking my kids to the Children's Museum {where they swapped tons of germs with other little grubby kids}, and seeing my sister Fe's new house. By the time we dropped Cathy off at the airport that evening, we were all spent and ready to collapse in bed.
Last week I started watching two other children, Jace and Mia.
Jace is a 2 year-old little boy only 4 days older than Avery, and Mia is not even 2 months-old yet. Add them into the mix with my three and you have a full day, believe me!
Jace has been a total sweetie and plays so well with the girls, even though they try their best to boss him around. Mia is so tiny! We are still figuring each other out, especially since she is a breastfed baby and would definitely prefer just having her mommy around. It was extremely helpful to have Cathy here the first two days since this is new for all of us. She could hold Mia while I prepared lunch or break up a fight over blocks while I fed Graham.
Today was a longer day with the kids and all went well. Graham definitely doesn't appreciate having to share his mom. Today while I was feeding Mia, he had his first tantrum - throwing himself down on the floor and crying. Multiple times. He is all of 9 months-old. Seriously, kid?? It was so impressive I actually got it recorded on my phone. (Now if only my phone wasn't from 1952 so I could upload it onto this site...)
And with all this stuff going on, each of us has a cold now too.
And sore throats.
And horrible coughs.
I really should be in bed at this point. So on that note, goodnight!
Sunday, August 11, 2013
Surgery #3 and After
First of all, I want to say thank you to all the people who said prayers and kept us in their thoughts these past few days. Surgery - especially on your child - is unnerving and it helped to know there were so many people thinking of us.
We spent Thursday afternoon hanging out at our hotel in Council Bluffs. Jared gets a very nice state rate, which makes it more affordable for us to get a nice place with a pool. My parents got a room too, and we hung out together, along with my sisters Fe and Beaner. We swam for a while and then ordered some pizzas. It was easy and carefree, and it was fun for the kids - which was our main goal. Graham actually fell asleep in his pack-n-play at 8 PM and slept all night long. The girls weren't as quiet; they tossed and turned all night. And man, do they talk in their sleep! It was far from a restful night for Jared and me, but it was better than the three hours or so we got the last time all five of us bunked in a hotel together.
Her surgery was at Boy's Town National Research Hospital in Omaha. This was our first time using this hospital. We used The Nebraska Medical Center before since we both worked there and it was closer to home for us. I am definitely glad to have used the Boy's Town facility this time.
It is just so perfect for kids.
The list of available Disney movies is a mile long and there is a well-equipped playroom in the unit with toys so cool even I wanted to play with them. The nurses and other staff were great and very accommodating, especially since we had an 8 month-old along with us.
Bailey's surgery was scheduled for 10:30 so we had to be at the hospital by 9 AM. Bailey asked for something to eat and drink a few times after waking up, but it wasn't nearly as bad as I feared. We told her the doctor wanted her to wait until after he saw her, and she accepted that and didn't ask much more. She freaked when it came to putting on the surgery jammies, but quickly chilled out when we pulled out the Ipad.
Dr. Miller, our plastic surgeon, came to see Bailey and discuss the plan one last time. Then a short while later the nurse came in to administer the oral Versed. Bailey got really funny after that. She asked odd questions and gave funny little grins. She also tipped over while sitting upright on her bed (but immediately got back into position to play with the Ipad.) Then at 11:15 the OR nurses came to take her back. The Versed worked wonders and she just sat and lazily let them take her away - as long as she had Bun-Bun of course.
The surgery itself took about an hour, and she was in recovery for about another 30 minutes.
It went great.
She came back to the room very groggy, as was to be expected. Daddy got in some cuddle time while she slowly woke up.
She was swollen and bruised. But even with all that, I could tell that her nose looked much better and the right side of her lip had that "peak" it didn't have before.
She slowly came around and when she did... it wasn't pretty. She was hysterical and inconsolable for a good 10 to 15 minutes until we got her calmed down enough to vocalize what Disney movie she would like us to turn on. Apparently Mulan did the trick. {Thanks girl.}
A dose of pain medication plus another 15 minutes and she was golden. It's like a switch flipped: all of the sudden she sat up in bed and asked two quick - but very important - questions:
Where is Papa? I need to see him.
When can I go home?
Girl loves her Papa. And her own bed.
We were released from the hospital a little before 5PM that same day. We should have been home at a decent hour... Unfortunately we spent over 2 hours going between Walgreens pharmacies trying to obtain just one pain medication. And this was after we had the nurse call it in hours before we left! It was frustrating to say the least. It's never good when your kids start AND finish a movie in the car while waiting in a parking lot.
Not cool, Walgreens. Not cool.
Many extra miles and lots of muttered expletives later, we finally had what we needed.
Bailey slept through the night that first night, not waking even once for pain medication. In fact, she doesn't even seem to complain much of pain at all. Kids really are amazing. She lets us know when her nose is starting to hurt, but it just doesn't seem to bother her much. She has to sleep with the arm splints on at night to ensure she doesn't accidentally scratch or rub her face. We don't use them during the day because Bailey knows that if she touches her face, the splints go back on, and she is not volunteering for that.
The swelling has gone down a little bit, and the bruising didn't actually stick around like I thought it might. I think she looks really great for going through so much just two days ago! We head back to Omaha on Wednesday to have the stitches removed with Dr. Miller. We had some issues with scheduling, so he is coming in on his afternoon off to see her. {Have I said he is amazing??} The nasal stent in her right nostril (in place to help hold the correct shape) will come out sometime in the next three weeks or so.
She hates me taking her picture lately, especially since she knows her nose looks different. After I took this picture she said to me, "There. I am done. You are bossering to me." ("Bossering" = being bossy in Bailey speak.)
I actually got a smile today when she was playing with her new Play-Doh ice cream set - a gift from Jared's thoughtful coworker, Janelle.
{Thanks Janelle! Love is not a strong enough word to describe how Bailey feels about this present.}
She is a little self-conscious about her nose and lip right now. She was shy in church today when someone asked if she fell and hit her face. (Really??!) But with my prompting, she piped up and said with pride, "I just had surgery!"
Tonight in bed, I gave her a kiss and said, "I love you, beautiful girl."
She replied back, "I am not beautiful right now, Mommy. My nose is not beautiful."
She was beautiful before her surgery and she is beautiful now.
And she is such a brave girl, and being brave is so very beautiful too.
We spent Thursday afternoon hanging out at our hotel in Council Bluffs. Jared gets a very nice state rate, which makes it more affordable for us to get a nice place with a pool. My parents got a room too, and we hung out together, along with my sisters Fe and Beaner. We swam for a while and then ordered some pizzas. It was easy and carefree, and it was fun for the kids - which was our main goal. Graham actually fell asleep in his pack-n-play at 8 PM and slept all night long. The girls weren't as quiet; they tossed and turned all night. And man, do they talk in their sleep! It was far from a restful night for Jared and me, but it was better than the three hours or so we got the last time all five of us bunked in a hotel together.
Her surgery was at Boy's Town National Research Hospital in Omaha. This was our first time using this hospital. We used The Nebraska Medical Center before since we both worked there and it was closer to home for us. I am definitely glad to have used the Boy's Town facility this time.
It is just so perfect for kids.
The list of available Disney movies is a mile long and there is a well-equipped playroom in the unit with toys so cool even I wanted to play with them. The nurses and other staff were great and very accommodating, especially since we had an 8 month-old along with us.
Bailey's surgery was scheduled for 10:30 so we had to be at the hospital by 9 AM. Bailey asked for something to eat and drink a few times after waking up, but it wasn't nearly as bad as I feared. We told her the doctor wanted her to wait until after he saw her, and she accepted that and didn't ask much more. She freaked when it came to putting on the surgery jammies, but quickly chilled out when we pulled out the Ipad.
Dr. Miller, our plastic surgeon, came to see Bailey and discuss the plan one last time. Then a short while later the nurse came in to administer the oral Versed. Bailey got really funny after that. She asked odd questions and gave funny little grins. She also tipped over while sitting upright on her bed (but immediately got back into position to play with the Ipad.) Then at 11:15 the OR nurses came to take her back. The Versed worked wonders and she just sat and lazily let them take her away - as long as she had Bun-Bun of course.
The surgery itself took about an hour, and she was in recovery for about another 30 minutes.
It went great.
She came back to the room very groggy, as was to be expected. Daddy got in some cuddle time while she slowly woke up.
She was swollen and bruised. But even with all that, I could tell that her nose looked much better and the right side of her lip had that "peak" it didn't have before.
A dose of pain medication plus another 15 minutes and she was golden. It's like a switch flipped: all of the sudden she sat up in bed and asked two quick - but very important - questions:
Where is Papa? I need to see him.
When can I go home?
Girl loves her Papa. And her own bed.
We were released from the hospital a little before 5PM that same day. We should have been home at a decent hour... Unfortunately we spent over 2 hours going between Walgreens pharmacies trying to obtain just one pain medication. And this was after we had the nurse call it in hours before we left! It was frustrating to say the least. It's never good when your kids start AND finish a movie in the car while waiting in a parking lot.
Not cool, Walgreens. Not cool.
Many extra miles and lots of muttered expletives later, we finally had what we needed.
Bailey slept through the night that first night, not waking even once for pain medication. In fact, she doesn't even seem to complain much of pain at all. Kids really are amazing. She lets us know when her nose is starting to hurt, but it just doesn't seem to bother her much. She has to sleep with the arm splints on at night to ensure she doesn't accidentally scratch or rub her face. We don't use them during the day because Bailey knows that if she touches her face, the splints go back on, and she is not volunteering for that.
The swelling has gone down a little bit, and the bruising didn't actually stick around like I thought it might. I think she looks really great for going through so much just two days ago! We head back to Omaha on Wednesday to have the stitches removed with Dr. Miller. We had some issues with scheduling, so he is coming in on his afternoon off to see her. {Have I said he is amazing??} The nasal stent in her right nostril (in place to help hold the correct shape) will come out sometime in the next three weeks or so.
I actually got a smile today when she was playing with her new Play-Doh ice cream set - a gift from Jared's thoughtful coworker, Janelle.
{Thanks Janelle! Love is not a strong enough word to describe how Bailey feels about this present.}
She is a little self-conscious about her nose and lip right now. She was shy in church today when someone asked if she fell and hit her face. (Really??!) But with my prompting, she piped up and said with pride, "I just had surgery!"
Tonight in bed, I gave her a kiss and said, "I love you, beautiful girl."
She replied back, "I am not beautiful right now, Mommy. My nose is not beautiful."
That about broke this mama's heart.
I told her that yes, she is beautiful.She was beautiful before her surgery and she is beautiful now.
And she is such a brave girl, and being brave is so very beautiful too.
Thursday, August 8, 2013
Surgery Tomorrow
Tomorrow morning Bailey is scheduled to have her third cleft surgery.
It will be at Boy's Town in Omaha.
This surgery is more cosmetic in nature. She is having a nasal revision and lip revision - which in layman's terms basically means she is having a nose job and the right side of her lip worked on to resemble her "good" side.
I love her sweet little face just the way it is,
but I know that in the years to come, she is going to appreciate all these surgeries and all this pain and all this hassle. She is going to want to feel and look as "normal" as possible. I hope that this surgery brings positive results and makes her differences even more difficult to notice.
And while surgery has been scheduled for a good month or two, it is just now starting to hit me that our little lady is going to be operated on. Again. And although we have been through this a few times before, it is always a little scary. I do know that Bailey will do great. She is used to doctor's appointments, and she was awesome for her last ear tube surgery. She is my big, brave girl, and she will be just fine.
That being said, any and all prayers would be appreciated.
Both for Bailey herself and for the doctors, nurses, and other medical professionals caring for Bailey.
I would also appreciate any prayers for our sanity as we attempt another night in a hotel with three small children. With any luck we might get more than 3 hours of sleep this time!
Baby Benadryl is kosher, right?
It will be at Boy's Town in Omaha.
This surgery is more cosmetic in nature. She is having a nasal revision and lip revision - which in layman's terms basically means she is having a nose job and the right side of her lip worked on to resemble her "good" side.
I love her sweet little face just the way it is,
but I know that in the years to come, she is going to appreciate all these surgeries and all this pain and all this hassle. She is going to want to feel and look as "normal" as possible. I hope that this surgery brings positive results and makes her differences even more difficult to notice.
And while surgery has been scheduled for a good month or two, it is just now starting to hit me that our little lady is going to be operated on. Again. And although we have been through this a few times before, it is always a little scary. I do know that Bailey will do great. She is used to doctor's appointments, and she was awesome for her last ear tube surgery. She is my big, brave girl, and she will be just fine.
That being said, any and all prayers would be appreciated.
Both for Bailey herself and for the doctors, nurses, and other medical professionals caring for Bailey.
I would also appreciate any prayers for our sanity as we attempt another night in a hotel with three small children. With any luck we might get more than 3 hours of sleep this time!
Baby Benadryl is kosher, right?
Thursday, July 18, 2013
a cleft on the big screen
With Bailey starting preschool this fall, I have had some random here and there thoughts about her cleft and other kids. It's not something I am actually worried about; it's more that I want to be prepared. And more importantly, I want her to be prepared.
In this age of bullying and pressure to fit in, Bailey has a visible difference from other kids. No matter that it is relatively small and many people don't notice it now - someone is going to. In fact, kids already have.
Just last week I was babysitting two boys: a 9 year-old and a 2 year-old.
(I will be watching the 2 year-old Jace and his new sister Mia when school starts this fall.)
We were playing outside in the backyard, checking out Baxter the bunny. Carter (the 9 year-old) was talking to Bailey and all of the sudden said, "What's with your lip?"
Bailey wasn't quite sure how to respond. She quietly touched her upper lip and didn't say anything. She looked up at me.
I said to Bailey, "Remember? That's your special scar that we talk about."
She smiled and said, "Oh yeah, my scar!"
I was able to explain to Carter that Bailey was born looking different than other babies because her lip just didn't grow together like it was supposed to. He listened to my explanation, and when I asked if he wanted to see a picture of what she looked like when she was very little, he eagerly said yes. He looked at her pictures, asking appropriate questions about her surgeries and if she could eat from a bottle.
And he kept repeating "She was one lucky baby."
She was. And so were we.
She wasn't the baby I'd been picturing for months as she grew in my belly; God had other plans.
Parts of her early life sucked:
But even with all of it, I don't really think about her cleft. I don't spend time wishing I could make it go away. I don't worry much about the future surgeries or expense. I don't waste my time on this thing I cannot change. It's part of who she is. And our girl is just perfect the way she is.
I do spend time reading blogs and online boards and websites devoted to clefts with the hope that I can garner some much-needed knowledge on how to best equip Bailey with the confidence and information she needs to live in a world that very much judges us on our looks rather than our hearts.
With that in mind, it saddened me to see that Disney's new movie "The Lone Ranger" gave its main villain (Butch Cavendish) a cleft lip for the purpose of making him seem more evil. This wasn't an actor who already had scar. They purposefully gave him a dental prosthetic which forced his lip into a cleft-like position.
A direct quote from Disney's movie website:
"Cavendish is a ruthless outlaw whose terribly scarred face is a perfect reflection of the bottomless pit that passes for his soul."
The only scar I am really seeing is the one above his lip. Just a cleft scar and a lot of wrinkles. In an interview the actor said that the scar and make-up made it extremely easy to slip into the role of this "soulless villain."
Now, I am not a letter-writer. I don't send letters to my senator or protest things. (I leave that to Jared, who happens to really enjoy a strongly worded letter.) But this did disappoint me. One cleft scar and some wrinkles translates to a soulless outlaw? It just seems a poor way to establish characterization. Wouldn't a scar on his face or eye or cheek have been just as effective to help us make the leap to yep, he is the bad guy ?
Would Disney have used another "disability" or birth defect to build characterization - to show other characters as inferior, stupid, or slow?
And maybe I am being overly sensitive on the issue, but to me it seems simply unnecessary. I think the bad teeth, unwashed hair, and crazy eyes are more than enough to help me figure out which side this character is on, especially since most heroes don't usually appear on screen looking as if they haven't had a bath in years.
I am probably not going to see the movie, most likely because I wasn't ever going to in the first place. And I am not crying any tears over the reported poor ticket sales either.
The decision to use a cleft lip to portray villainy seems in poor taste for Disney - a company whose movies I have loved since early childhood. (Loved me some Little Mermaid!) And speaking of childhood, one out of every 700 babies is born with a cleft, making it one of the most common birth defects.
A lot of little kids watch and love Disney movies, including my own. And while I realize this movie is not aimed toward small children, the intent of using a cleft lip to add to the "evilness" of a character is not helping my innocent 3 year-old. She will be facing enough teasing and perhaps bullying down the road without a major film studio adding to it.
In this age of bullying and pressure to fit in, Bailey has a visible difference from other kids. No matter that it is relatively small and many people don't notice it now - someone is going to. In fact, kids already have.
Just last week I was babysitting two boys: a 9 year-old and a 2 year-old.
(I will be watching the 2 year-old Jace and his new sister Mia when school starts this fall.)
We were playing outside in the backyard, checking out Baxter the bunny. Carter (the 9 year-old) was talking to Bailey and all of the sudden said, "What's with your lip?"
Bailey wasn't quite sure how to respond. She quietly touched her upper lip and didn't say anything. She looked up at me.
I said to Bailey, "Remember? That's your special scar that we talk about."
She smiled and said, "Oh yeah, my scar!"
I was able to explain to Carter that Bailey was born looking different than other babies because her lip just didn't grow together like it was supposed to. He listened to my explanation, and when I asked if he wanted to see a picture of what she looked like when she was very little, he eagerly said yes. He looked at her pictures, asking appropriate questions about her surgeries and if she could eat from a bottle.
And he kept repeating "She was one lucky baby."
She was. And so were we.
She wasn't the baby I'd been picturing for months as she grew in my belly; God had other plans.
Parts of her early life sucked:
NICU time. Pumping. Surgeries. Bottles with so many freakin' parts.
Any there will be more challenges:
Missing teeth. More surgeries. Teasing. Braces.
I do spend time reading blogs and online boards and websites devoted to clefts with the hope that I can garner some much-needed knowledge on how to best equip Bailey with the confidence and information she needs to live in a world that very much judges us on our looks rather than our hearts.
With that in mind, it saddened me to see that Disney's new movie "The Lone Ranger" gave its main villain (Butch Cavendish) a cleft lip for the purpose of making him seem more evil. This wasn't an actor who already had scar. They purposefully gave him a dental prosthetic which forced his lip into a cleft-like position.
A direct quote from Disney's movie website:
"Cavendish is a ruthless outlaw whose terribly scarred face is a perfect reflection of the bottomless pit that passes for his soul."
The only scar I am really seeing is the one above his lip. Just a cleft scar and a lot of wrinkles. In an interview the actor said that the scar and make-up made it extremely easy to slip into the role of this "soulless villain."
Now, I am not a letter-writer. I don't send letters to my senator or protest things. (I leave that to Jared, who happens to really enjoy a strongly worded letter.) But this did disappoint me. One cleft scar and some wrinkles translates to a soulless outlaw? It just seems a poor way to establish characterization. Wouldn't a scar on his face or eye or cheek have been just as effective to help us make the leap to yep, he is the bad guy ?
Would Disney have used another "disability" or birth defect to build characterization - to show other characters as inferior, stupid, or slow?
And maybe I am being overly sensitive on the issue, but to me it seems simply unnecessary. I think the bad teeth, unwashed hair, and crazy eyes are more than enough to help me figure out which side this character is on, especially since most heroes don't usually appear on screen looking as if they haven't had a bath in years.
I am probably not going to see the movie, most likely because I wasn't ever going to in the first place. And I am not crying any tears over the reported poor ticket sales either.
The decision to use a cleft lip to portray villainy seems in poor taste for Disney - a company whose movies I have loved since early childhood. (Loved me some Little Mermaid!) And speaking of childhood, one out of every 700 babies is born with a cleft, making it one of the most common birth defects.
A lot of little kids watch and love Disney movies, including my own. And while I realize this movie is not aimed toward small children, the intent of using a cleft lip to add to the "evilness" of a character is not helping my innocent 3 year-old. She will be facing enough teasing and perhaps bullying down the road without a major film studio adding to it.
Thursday, April 18, 2013
Tubes Round 3
This past Wednesday Bailey had her ear tubes removed and replaced.
Her first set was placed way back in May of 2010 when she had her lip repaired. Those quickly clogged off with wax (I have such waxy children) and had to be replaced in November of that same year when her palate was repaired.
And since then we have done pretty well. Two years is a long time for T-tubes - or so I am told. She doesn't have frequent ear infections; it is just all that wax. Hopefully this next set lasts just as long or longer and she can start hearing normally again.
We had to be at the hospital by 6:30.
Since Bailey was the youngest patient, we got to be first. She was pretty timid once we got there.
She was trying to protest against wearing the surgical jammies, but once she received a stuffed bunny from her doctor, she was down for anything.
We watched some PBS shows while our doctor took his sweet time getting lined around.
Only 45 minutes late...
Luckily my girl is used to the doctor stuff. Crayons also helped for distraction purposes.
The procedure went well.
Both tubes were blocked and she had fluid in the right ear, so it definitely needed done sooner rather than later.
The recovery nurse rolled her back on her bed and I could hear her non-stop chatter coming down the hall long before she arrived to her room. She was literally yelling "hi!" to every person she saw. And then she proceeded to tell them all about her latest adventure: how she cried in the room and got yucky medicine and that her nose smelled and her ears were all better now.
Our nurse remarked, "Don't worry, she is just a little high from the medication" as she chatted away to me about all that went on.
Nope.
That is just Bailey. Full of animation with so very much to say.
We hung out for another hour and a half, half-heartedly watching Sesame Street and cat-napping on the bed (Mom included).
She was begging to leave the entire time.
"Let's leave now. I want to see Grandma at my house."
Her first set was placed way back in May of 2010 when she had her lip repaired. Those quickly clogged off with wax (I have such waxy children) and had to be replaced in November of that same year when her palate was repaired.
And since then we have done pretty well. Two years is a long time for T-tubes - or so I am told. She doesn't have frequent ear infections; it is just all that wax. Hopefully this next set lasts just as long or longer and she can start hearing normally again.
We had to be at the hospital by 6:30.
Since Bailey was the youngest patient, we got to be first. She was pretty timid once we got there.
She was trying to protest against wearing the surgical jammies, but once she received a stuffed bunny from her doctor, she was down for anything.
A sweet wrist band helped things too. She loves any "jewelry."
We watched some PBS shows while our doctor took his sweet time getting lined around.
Only 45 minutes late...
Luckily my girl is used to the doctor stuff. Crayons also helped for distraction purposes.
The procedure went well.
Both tubes were blocked and she had fluid in the right ear, so it definitely needed done sooner rather than later.
The recovery nurse rolled her back on her bed and I could hear her non-stop chatter coming down the hall long before she arrived to her room. She was literally yelling "hi!" to every person she saw. And then she proceeded to tell them all about her latest adventure: how she cried in the room and got yucky medicine and that her nose smelled and her ears were all better now.
Our nurse remarked, "Don't worry, she is just a little high from the medication" as she chatted away to me about all that went on.
Nope.
That is just Bailey. Full of animation with so very much to say.
We hung out for another hour and a half, half-heartedly watching Sesame Street and cat-napping on the bed (Mom included).
She was begging to leave the entire time.
"Let's leave now. I want to see Grandma at my house."
Patiently waiting.
or as close as a 3 year-old gets.
All in all, it went very smoothly.
She did great and I was very proud of her.
It was good practice for the surgery she will be having this summer to revise her previous cleft lip surgery. That will be a much more involved one, but if she even does half as well as she did yesterday, I will be happy. She did pretty kick-ass with her first two cleft surgeries, and I don't think this next time will be any different.
Wednesday, March 20, 2013
Omaha trip
We spent the last couple days in Omaha.
Bailey has to see her dentist every 6 months and her cleft team just once every year at this point. (To see the links to her particular care givers, click HERE.) Thankfully we were able to schedule them on the same day and save a trip.
We headed down early the first morning so we could meet Felicia and hang out for the day. We decided to go to Pump It Up - an inflatables play place. It was cheap entertainment for all and also a great workout for all the adults involved.
{I have no pictures of Bailey because the girl didn't stand still long enough for me to ever take one!}
It was fun because the adults could go with the kids into any of the areas. Bailey and Avery's favorite was the slide. And boy, was that a workout for Mama. Whew! Carrying a 30-pound toddler up an inflatable staircase is a lot of work. Eventually Bailey figured out to do it herself and then became pretty independent about it. Jared, Fe, and I were pretty shocked at how tired we were after just an hour and a half.
We went and ate some lunch to refuel before hitting the hotel.
Now that we have 3 kids, it is getting a little hard (and probably inconvenient) for us to take over Fe's house for the night, so we got a hotel room. Jared gets a cheap state rate, so we figured, why not? The fact that there was a pool was also a big bonus. We figured that between swimming in the hotel pool and jumping on the inflatables, the girls would be exhausted come bedtime. Yeah right! (More on that later.) Both Felicia and Catrina came over to swim, too.
Bailey was very independent with her Puddle Jumper on. She swam back and forth across the pool and jumped in over and over all by herself.
After some pizza in our hotel room, it was time to wind down for bed.
Both girls got a quick bath (where Avery only tried to eat the bar of soap twice - whose child is this?!), put on their pajamas, and climbed into bed with their bunnies.
And don't be fooled by Avery's tired-looking face; these children did not give up without a fight. I think that after about 2 hours, they finally fell asleep around 10 pm. And just because they were sleeping doesn't mean that we got any rest. Bailey snores louder than most grown men. She finally cut that out around midnight, at which time Graham woke up from his 2 hour nap. I fed him and put him in bed with me, where he slept for the rest of the night.
Jared got the worst end of the sleeping situation. He originally started out with the girls, trying to keep them from hitting each other or messing around. After they were asleep he joined me until Graham took up room. He moved back to bed with the girls. Apparently Avery is extra lovey in her sleep. She kept cuddling up to him and stroking his arm, keeping Jared mildly awake, but it was the nipple pinch she gave him in the middle of the night that woke him up for good.
Morning came all too soon.
We headed off to Bailey's 8 AM cleft team appointment at Boy's Town.
Her cleft team consists of every specialty that a child with a cleft might need:
She met with the dental staff first. Surprisingly Bailey now has a tooth coming into her cleft - a tooth we previously thought would be missing. Her mouth is going to be a huge work-in-progress, but for now we are just at a point where great tooth brushing is the only concern. Cavities are big problems for kids with clefts due to the already large chunk of bone missing, so we are doing the best job we can with oral hygiene. (Which is why we are mean parents that make her brush her teeth whether she wants to or not - no skipping!)
Following dental was audiology . This is the first year that she was able to cooperate with the hearing tests, so she went into the sound proof booth and played games corresponding with the tones she was hearing through the headphones. Along with other tests and an exam, it was determined that she is suffering from some mild hearing loss, most likely due to the fact that both of her T-tubes are clogged completely with ear wax. We have had this happen before - back when she was about 5 or 6 months old. {She is a very waxy child.} There isn't much you can do to prevent the wax buildup and she had to have her tubes removed and replaced at 9 months when her palate was surgically repaired.
Next up she saw her plastic surgeon, Dr. Miller, whom Bailey has always liked. She is always so cooperative with him: smiling for the pictures he needed to take and letting him get a good look in her mouth.
We discussed the next step in her surgical process - a revision of her previous lip/nose repair surgery. As you can see in pictures, her scar site has a slight bump there and her nose is pretty flat. Dr. Miller plans to shave off the bump and try to make her upper lip more symmetrical, while also reshaping her right nostril, which will help her nose have a more natural shape. This surgery can be done anytime - usually before a child starts school - so we are probably going to do it sometime in the next few months. It is just an outpatient surgery, so no hospital stay - yippee! We are blessed to have such amazing insurance through Jared's job, and it is a relief not to have to worry about the cost of these procedures.
The new ENT - Dr. Lusk - came in next.
We are both absolutely overjoyed that there is a new ENT for the team. We HATED the last one. I was always praying Jared would just play nice and not go off on him. We just couldn't handle that guy. Ugh, he was horrible. (You can read about part of why we disliked him HERE.)
Anyway, I digress...
He examined her ears and found that yes, they are both plugged with wax and it can't be manually removed without removing the tubes. Also, she has fluid behind one of the tubes, which is probably causing the ear pain she has been having. So our only choice is to have them removed and replaced. We were hoping to just do this with the upcoming plastic surgery revision, but it might have to be done separately since it needs to be done soon. We will find out in the next couple days what the game plan is.
She saw the rest of her providers just casually as they popped in and out during our meetings with plastics and ENT. The speech therapist was impressed with her language skills and said she is right on track for her age with absolutely no cleft-related speech problems. She will have to start being monitored through the school system when she starts preschool in the fall, but for now is doing great.
After the cleft team visit we made a very-painful-on-the-bank-account trip to Costco and then met Fe for lunch before going to the dental appointment.
It was much like last time, with the exception that this time Bailey had x-rays. It turns out that she doesn't have a permanent tooth for the cleft, which is what we figured. So in the future she will need a dental implant, but that is many years down the road. She did pretty well getting her teeth cleaned, especially since she was crabby and running very low on sleep. The promise of some Disney princess stickers and a toy from the machine was enough to enlist her cooperation.
And after the dental appointment we were free to finally go home.
Hallelujah, praise Jesus!
It was only 36 hours, but we were wiped out. Thankfully everyone slept well last night (okay, everyone but Jared who had to work). Even Graham was nice to his mama and slept a full 9 hours straight. (Fingers crossed that he keeps that up!)
Bailey has to see her dentist every 6 months and her cleft team just once every year at this point. (To see the links to her particular care givers, click HERE.) Thankfully we were able to schedule them on the same day and save a trip.
We headed down early the first morning so we could meet Felicia and hang out for the day. We decided to go to Pump It Up - an inflatables play place. It was cheap entertainment for all and also a great workout for all the adults involved.
{I have no pictures of Bailey because the girl didn't stand still long enough for me to ever take one!}
It was fun because the adults could go with the kids into any of the areas. Bailey and Avery's favorite was the slide. And boy, was that a workout for Mama. Whew! Carrying a 30-pound toddler up an inflatable staircase is a lot of work. Eventually Bailey figured out to do it herself and then became pretty independent about it. Jared, Fe, and I were pretty shocked at how tired we were after just an hour and a half.
We went and ate some lunch to refuel before hitting the hotel.
Now that we have 3 kids, it is getting a little hard (and probably inconvenient) for us to take over Fe's house for the night, so we got a hotel room. Jared gets a cheap state rate, so we figured, why not? The fact that there was a pool was also a big bonus. We figured that between swimming in the hotel pool and jumping on the inflatables, the girls would be exhausted come bedtime. Yeah right! (More on that later.) Both Felicia and Catrina came over to swim, too.
Both girls had a good time swimming.
When Avery wasn't being thrown around by Jared, she spent her time trying to sneak into the hot tub. She had the naughtiest look of satisfaction and delight whenever she succeeded. {Family members: I know you can picture this exact look.}
After some pizza in our hotel room, it was time to wind down for bed.
Both girls got a quick bath (where Avery only tried to eat the bar of soap twice - whose child is this?!), put on their pajamas, and climbed into bed with their bunnies.
And don't be fooled by Avery's tired-looking face; these children did not give up without a fight. I think that after about 2 hours, they finally fell asleep around 10 pm. And just because they were sleeping doesn't mean that we got any rest. Bailey snores louder than most grown men. She finally cut that out around midnight, at which time Graham woke up from his 2 hour nap. I fed him and put him in bed with me, where he slept for the rest of the night.
Jared got the worst end of the sleeping situation. He originally started out with the girls, trying to keep them from hitting each other or messing around. After they were asleep he joined me until Graham took up room. He moved back to bed with the girls. Apparently Avery is extra lovey in her sleep. She kept cuddling up to him and stroking his arm, keeping Jared mildly awake, but it was the nipple pinch she gave him in the middle of the night that woke him up for good.
Morning came all too soon.
We headed off to Bailey's 8 AM cleft team appointment at Boy's Town.
Her cleft team consists of every specialty that a child with a cleft might need:
- pediatrician
- nurse
- plastic surgeon
- dentist
- orthodontist
- geneticist
- ENT doctor
- audiologist
- speech pathology
She met with the dental staff first. Surprisingly Bailey now has a tooth coming into her cleft - a tooth we previously thought would be missing. Her mouth is going to be a huge work-in-progress, but for now we are just at a point where great tooth brushing is the only concern. Cavities are big problems for kids with clefts due to the already large chunk of bone missing, so we are doing the best job we can with oral hygiene. (Which is why we are mean parents that make her brush her teeth whether she wants to or not - no skipping!)
Following dental was audiology . This is the first year that she was able to cooperate with the hearing tests, so she went into the sound proof booth and played games corresponding with the tones she was hearing through the headphones. Along with other tests and an exam, it was determined that she is suffering from some mild hearing loss, most likely due to the fact that both of her T-tubes are clogged completely with ear wax. We have had this happen before - back when she was about 5 or 6 months old. {She is a very waxy child.} There isn't much you can do to prevent the wax buildup and she had to have her tubes removed and replaced at 9 months when her palate was surgically repaired.
Next up she saw her plastic surgeon, Dr. Miller, whom Bailey has always liked. She is always so cooperative with him: smiling for the pictures he needed to take and letting him get a good look in her mouth.
We discussed the next step in her surgical process - a revision of her previous lip/nose repair surgery. As you can see in pictures, her scar site has a slight bump there and her nose is pretty flat. Dr. Miller plans to shave off the bump and try to make her upper lip more symmetrical, while also reshaping her right nostril, which will help her nose have a more natural shape. This surgery can be done anytime - usually before a child starts school - so we are probably going to do it sometime in the next few months. It is just an outpatient surgery, so no hospital stay - yippee! We are blessed to have such amazing insurance through Jared's job, and it is a relief not to have to worry about the cost of these procedures.
The new ENT - Dr. Lusk - came in next.
We are both absolutely overjoyed that there is a new ENT for the team. We HATED the last one. I was always praying Jared would just play nice and not go off on him. We just couldn't handle that guy. Ugh, he was horrible. (You can read about part of why we disliked him HERE.)
Anyway, I digress...
He examined her ears and found that yes, they are both plugged with wax and it can't be manually removed without removing the tubes. Also, she has fluid behind one of the tubes, which is probably causing the ear pain she has been having. So our only choice is to have them removed and replaced. We were hoping to just do this with the upcoming plastic surgery revision, but it might have to be done separately since it needs to be done soon. We will find out in the next couple days what the game plan is.
She saw the rest of her providers just casually as they popped in and out during our meetings with plastics and ENT. The speech therapist was impressed with her language skills and said she is right on track for her age with absolutely no cleft-related speech problems. She will have to start being monitored through the school system when she starts preschool in the fall, but for now is doing great.
After the cleft team visit we made a very-painful-on-the-bank-account trip to Costco and then met Fe for lunch before going to the dental appointment.
It was much like last time, with the exception that this time Bailey had x-rays. It turns out that she doesn't have a permanent tooth for the cleft, which is what we figured. So in the future she will need a dental implant, but that is many years down the road. She did pretty well getting her teeth cleaned, especially since she was crabby and running very low on sleep. The promise of some Disney princess stickers and a toy from the machine was enough to enlist her cooperation.
And after the dental appointment we were free to finally go home.
Hallelujah, praise Jesus!
It was only 36 hours, but we were wiped out. Thankfully everyone slept well last night (okay, everyone but Jared who had to work). Even Graham was nice to his mama and slept a full 9 hours straight. (Fingers crossed that he keeps that up!)
Friday, January 25, 2013
Cleft Book
Recently I was asked to submit Bailey's story for a new book called
It's going to be a compilation of stories from parents of cleft-affected children.
The goal is for the book to be a reference for parents going through the same ordeal.
All proceeds from the sale of the book and related items will go to cleft charities like Smile Train.
I think it is a great idea.
Finding out about your child's cleft when you are pregnant gives you time to prepare.
But it also gives you a TON of time to worry, too.
You worry about the most ridiculous things.
And the not-so-ridiculous things: like surgeries, feeding problems, and more surgeries.
The title for this book is so true; there are so many things I wish I'd known.
I knew our families would love her no matter what she looked like - they already did.
And above all, I knew we would love her no matter what.
Would her cleft be big?
(Yes, it was pretty big for being just on one side.)
Would her cleft "bother" me?
(No.)
Would I notice it all the time?
Would people make mean comments?
(No, except from a lab tech who said to a week-old Bailey, "You'll be beautiful someday!" I feel lucky that that is the worst we ever got.)
Every parent wants to know that their child is going to be okay and have a normal life. I hope this book helps calm some of the worries that cleft parents face.
I Wish I'd Known, How Much I'd Love You.
I submitted a short essay about our experience, along with Bailey's information, and before and after pictures.
It's going to be a compilation of stories from parents of cleft-affected children.
The goal is for the book to be a reference for parents going through the same ordeal.
All proceeds from the sale of the book and related items will go to cleft charities like Smile Train.
(Which is an amazing charity by the way!
An entire cleft repair surgery is only $250. amazing!)
I think it is a great idea.
Finding out about your child's cleft when you are pregnant gives you time to prepare.
But it also gives you a TON of time to worry, too.
You worry about the most ridiculous things.
And the not-so-ridiculous things: like surgeries, feeding problems, and more surgeries.
The title for this book is so true; there are so many things I wish I'd known.
For me, there were a few things I knew without a doubt.
I knew Bailey would have great medical care.I knew our families would love her no matter what she looked like - they already did.
And above all, I knew we would love her no matter what.
But there were so many other things I didn't know...
Would her cleft be big?
(Yes, it was pretty big for being just on one side.)
Would her cleft "bother" me?
(No.)
Would I notice it all the time?
(Again, no.)
(No, except from a lab tech who said to a week-old Bailey, "You'll be beautiful someday!" I feel lucky that that is the worst we ever got.)
Would we get weird looks from strangers?
(Nope, not really. If anything people came up to us and complimented Bailey while telling me stories of someone with a cleft in their families.)
Would she be able to eat okay?
(She ate like a champ from every type of special bottle we tried.)
How would surgeries go?
(Bailey always did awesome and was back to normal within a day or two. And while she has quite a few more to go, we are taking it one at a time.)
Will she get made fun of?
(We haven't crossed this bridge yet. And I am sure the answer will be yes. Every kid has some weakness that gets pointed out eventually. Hers is just worn in an easy-to-spot place.)
Every parent wants to know that their child is going to be okay and have a normal life. I hope this book helps calm some of the worries that cleft parents face.
I will share more info when the book is published later this year. :)
Subscribe to:
Posts (Atom)