For Chris Myers, life is full of love, smiles
Showing posts with label Parent Experiences. Show all posts
Showing posts with label Parent Experiences. Show all posts
Friday, September 6, 2013
In the News: For Chris Myers, life is full of love, smiles
Here is a great article from ESPN about Chris Myers, who plays football on the Texans, and his son Keane, who was born with a cleft.
For Chris Myers, life is full of love, smiles
For Chris Myers, life is full of love, smiles
Tuesday, March 15, 2011
Switching Craniofacial Teams
I thought this may be interesting for anyone else that is in a transient stage of life like we are...
My husband and I are both from southern California. Our little boy was born with a bilateral cleft lip and palate a year before my husband graduated from BYU. Clefts run in my family, and my cousin's little boy has a unilateral cleft and is seen at the Loma Linda University Craniofacial Team. He had finished all of his surgeries by the time he was 13 months old, so we anticipated a similar timeline for our little fellow. After some consideration we chose Dr. Morales as Ethan's surgeon, but were surprised to find that the timeline was vastly different than what was done in California.
Dr. Morales did three surgeries during Ethan's first year: placing the prosthesis, the lip and nose repair, and a partial repair of the soft palate. We were pleased with the work that he did and Ethan's repair looked amazing. My husband graduated in April and was on the accepted wait list at a medical school, so we were kind of in limbo during the summer. We talked to Dr. Morales about perhaps speeding up the surgery schedule because we'd be moving away, since we knew we couldn't afford to come back to Utah for Ethan's surgeries once we left; we had been on BYU insurance, but as starving students we couldn't afford the co-pays for all of Ethan's medical care, so Ethan was on Utah Medical. At one appointment Dr. Morales seemed to entertain the idea of doing things differently, but when we went in in July to schedule Ethan's soft palate repair for the fall, I asked again about changing things, and he responded by saying that lots of people traveled from far away (as far as Germany!) to have him treat their children. Not exactly the response I was looking for.
By the end of July we knew that my husband wouldn't be starting school until the next year and we needed to let our landlords know whether we were going to renew our lease for another year. We ended up feeling strongly that it was best to move back to California - so much so that we packed up and left in about a 2-day period. We had to cancel Ethan's surgery, since we wouldn't be covered by Utah medicaid, and MediCal or California Children's Services wouldn't cover an out-of-state surgery that could be done by someone in-state.
As soon as we got settled again, I called up the craniofacial team at Loma Linda to get Ethan in for an appointment. The soonest they had was at the end of October - 2 months out. At the appointment I was given several "assignments," including meeting with Ethan's new surgeon, Dr. Martin, who also operated on my cousin's little boy. Dr. Martin felt it best to go ahead and close the whole palate and gumline, since that is how he usually does surgeries and he didn't feel comfortable varying from what he normally does if it could be avoided. We were fine with that, and scheduled the surgery for late February. We also met with audiology/ENT and the pediatric dentistry clinic before going back to the clinic, and we found out that Ethan had mild to moderate hearing loss and some severe tooth decay (in part from all of the food that was continually stuck in his prosthesis - Dr. Martin's resident commented on how gunky it was when they took it out).
Ethan had his surgery, but Dr. Martin didn't end up feeling comfortable closing the gumline because the prior repair to the soft palate had created scar tissue, making it more difficult to bridge the gap between the palate and the gumline. He felt that if he had closed the entire thing, there would have been too much pressure and there was a very high risk of a fistula. We were pretty disappointed, because it meant that Ethan would still have to have the bone graft/gumline repair sometime between age 5 and 8.
We are still following up on Ethan's surgery, but he's looking good. One big lesson we learned is that once you start a treatment plan, you can't really switch half-way through. The timeline used in Utah works well, but once you start you can't skip any steps. Now I understand why Dr. Morales was so hesitant to switch things up. Dr. Martin had nothing but good things to say about Dr. Morales (he pretty well-known in the field); he just said that they do things differently.
There are things I like and dislike about both teams. I feel like the Loma Linda craniofacial team clinic is better organized and the process of making clinic appointments and follow-up were more straightforward, but I felt like Primary Children's Medical Center was a much more organized hospital and made for a much more pleasant and peaceful stay for Ethan on the actual surgery day.
My husband and I are both from southern California. Our little boy was born with a bilateral cleft lip and palate a year before my husband graduated from BYU. Clefts run in my family, and my cousin's little boy has a unilateral cleft and is seen at the Loma Linda University Craniofacial Team. He had finished all of his surgeries by the time he was 13 months old, so we anticipated a similar timeline for our little fellow. After some consideration we chose Dr. Morales as Ethan's surgeon, but were surprised to find that the timeline was vastly different than what was done in California.
Dr. Morales did three surgeries during Ethan's first year: placing the prosthesis, the lip and nose repair, and a partial repair of the soft palate. We were pleased with the work that he did and Ethan's repair looked amazing. My husband graduated in April and was on the accepted wait list at a medical school, so we were kind of in limbo during the summer. We talked to Dr. Morales about perhaps speeding up the surgery schedule because we'd be moving away, since we knew we couldn't afford to come back to Utah for Ethan's surgeries once we left; we had been on BYU insurance, but as starving students we couldn't afford the co-pays for all of Ethan's medical care, so Ethan was on Utah Medical. At one appointment Dr. Morales seemed to entertain the idea of doing things differently, but when we went in in July to schedule Ethan's soft palate repair for the fall, I asked again about changing things, and he responded by saying that lots of people traveled from far away (as far as Germany!) to have him treat their children. Not exactly the response I was looking for.
By the end of July we knew that my husband wouldn't be starting school until the next year and we needed to let our landlords know whether we were going to renew our lease for another year. We ended up feeling strongly that it was best to move back to California - so much so that we packed up and left in about a 2-day period. We had to cancel Ethan's surgery, since we wouldn't be covered by Utah medicaid, and MediCal or California Children's Services wouldn't cover an out-of-state surgery that could be done by someone in-state.
As soon as we got settled again, I called up the craniofacial team at Loma Linda to get Ethan in for an appointment. The soonest they had was at the end of October - 2 months out. At the appointment I was given several "assignments," including meeting with Ethan's new surgeon, Dr. Martin, who also operated on my cousin's little boy. Dr. Martin felt it best to go ahead and close the whole palate and gumline, since that is how he usually does surgeries and he didn't feel comfortable varying from what he normally does if it could be avoided. We were fine with that, and scheduled the surgery for late February. We also met with audiology/ENT and the pediatric dentistry clinic before going back to the clinic, and we found out that Ethan had mild to moderate hearing loss and some severe tooth decay (in part from all of the food that was continually stuck in his prosthesis - Dr. Martin's resident commented on how gunky it was when they took it out).
Ethan had his surgery, but Dr. Martin didn't end up feeling comfortable closing the gumline because the prior repair to the soft palate had created scar tissue, making it more difficult to bridge the gap between the palate and the gumline. He felt that if he had closed the entire thing, there would have been too much pressure and there was a very high risk of a fistula. We were pretty disappointed, because it meant that Ethan would still have to have the bone graft/gumline repair sometime between age 5 and 8.
We are still following up on Ethan's surgery, but he's looking good. One big lesson we learned is that once you start a treatment plan, you can't really switch half-way through. The timeline used in Utah works well, but once you start you can't skip any steps. Now I understand why Dr. Morales was so hesitant to switch things up. Dr. Martin had nothing but good things to say about Dr. Morales (he pretty well-known in the field); he just said that they do things differently.
There are things I like and dislike about both teams. I feel like the Loma Linda craniofacial team clinic is better organized and the process of making clinic appointments and follow-up were more straightforward, but I felt like Primary Children's Medical Center was a much more organized hospital and made for a much more pleasant and peaceful stay for Ethan on the actual surgery day.
Monday, November 9, 2009
Surgery Day
I know that someone in the group wrote a great, detailed description of what happens when you come in for surgery. Unfortunately, I haven't located it just yet. So while I am here in the waiting room, here's a quick rundown of surgery day.
The business day before surgery (i.e. Friday if surgery is on Monday), the hospital will call to tell you what time to come to the hospital, what time your child can eat, etc. The call will usually come in the mid to late afternoon (they called me at 2pm on Friday for Monday surgery this time, but last time it was closer to 4pm). Because of the risk of getting fluid in their lungs, babies cannot have any food or drink for several hours before surgery. This time, Ethan's schedule was this:
Solids: up until midnight
Breastmilk: until 5:15 a.m. (4 hours before surgery)
Pedialyte or Apple Juice: until 6:15 a.m. (3 hours before surgery)
Check-in: 7:45 a.m. (1 1/2 hours before surgery)
Surgery: 9:15 a.m.
When you arrive at the hospital, you check in at Same Day Surgery on the second floor. If you go up the elevators on the south side of the hospital (the opposite side from the Rainbow Cafe), the check-in area will be right near the elevators. When you walk in the room, there is an electronic kiosk to your right, and someone should be there to give you a beeper. They will beep you to go sign paperwork and give your insurance information at the desk, then they will beep you again to see a nurse before surgery.
Once they beep you the second time, a nursing assistant will weigh and measure the child, then you'll go in a room where they'll check temperature, blood pressure, oxygen, etc. and give you jammies to change them into. Then a nurse will come in and look at ears and mouth and listen to heart and lungs, then take you to the surgery waiting room. Last time the surgeons were running behind, so the nurse let us give Ethan some additional Pedialyte (so you might want to have some on hand, just in case).
While you are in the waiting room the surgeon will come talk to you and answer any questions that you have, then the anesthesiologist will come and do disclosures and have you sign paperwork. Then you will walk with the anesthesiologist down the hall toward the OR, and then the anesthesiologist will take the child in and send you to yet another waiting room. This point is one of the hardest, because you have to hand your baby over. We have been lucky, because Ethan has been fairly easy-going about it. Before the last surgery, he gave me a big smile as we handed him over. And this time he was totally happy to go off with the friendly anesthesiologist, who told the nurse that he was a sweetie and just cuddled up to her as he went to sleep. I'm not sure how I would have handled it if he was crying... =(
When you get to the surgery waiting room you'll check in with the people at the desk, then you can go get something to eat at the cafe or do anything else you need to do. Food and drink are welcome in the room, there is a courtesy phone and a TV. If you're there in the morning, a courtesy cart comes by between 10 and 11 with some complimentary snacks.
After the surgery is over, the surgeon will come tell you how it went, then once the child is waking up they will call for one parent (only one at that point) to go meet the child in post-op. You will stay there until the child is comfortable, then you will meet up with any other family members and head up to the 4th floor to a room (unless it's outpatient surgery, in which case you'll stay in the PACU area until you go home, which is usually as soon as the child has taken in enough liquids).
For me, this is where the hardest part begins. Ethan tends to wake up quickly and angrily, but the nurses are good at getting his pain managed and with some comforting he settles down fairly quickly. Then the next day is spent comforting and feeding and navigating several monitors plus an IV. Not to mention attempting to work in pumping milk and catching a few minutes for myself to eat and catch a few winks. We have been really lucky that Ethan hasn't had to stay for more than 24 hours as of yet; getting released and having all of those wires disconnected is always the greatest relief. Then we pack up, go home, and pray that it's not too long before Ethan gets to sleeping through the night again so that we're not perpetually exhausted. Yay for the end of surgery day!
The business day before surgery (i.e. Friday if surgery is on Monday), the hospital will call to tell you what time to come to the hospital, what time your child can eat, etc. The call will usually come in the mid to late afternoon (they called me at 2pm on Friday for Monday surgery this time, but last time it was closer to 4pm). Because of the risk of getting fluid in their lungs, babies cannot have any food or drink for several hours before surgery. This time, Ethan's schedule was this:
Solids: up until midnight
Breastmilk: until 5:15 a.m. (4 hours before surgery)
Pedialyte or Apple Juice: until 6:15 a.m. (3 hours before surgery)
Check-in: 7:45 a.m. (1 1/2 hours before surgery)
Surgery: 9:15 a.m.
When you arrive at the hospital, you check in at Same Day Surgery on the second floor. If you go up the elevators on the south side of the hospital (the opposite side from the Rainbow Cafe), the check-in area will be right near the elevators. When you walk in the room, there is an electronic kiosk to your right, and someone should be there to give you a beeper. They will beep you to go sign paperwork and give your insurance information at the desk, then they will beep you again to see a nurse before surgery.
Once they beep you the second time, a nursing assistant will weigh and measure the child, then you'll go in a room where they'll check temperature, blood pressure, oxygen, etc. and give you jammies to change them into. Then a nurse will come in and look at ears and mouth and listen to heart and lungs, then take you to the surgery waiting room. Last time the surgeons were running behind, so the nurse let us give Ethan some additional Pedialyte (so you might want to have some on hand, just in case).
While you are in the waiting room the surgeon will come talk to you and answer any questions that you have, then the anesthesiologist will come and do disclosures and have you sign paperwork. Then you will walk with the anesthesiologist down the hall toward the OR, and then the anesthesiologist will take the child in and send you to yet another waiting room. This point is one of the hardest, because you have to hand your baby over. We have been lucky, because Ethan has been fairly easy-going about it. Before the last surgery, he gave me a big smile as we handed him over. And this time he was totally happy to go off with the friendly anesthesiologist, who told the nurse that he was a sweetie and just cuddled up to her as he went to sleep. I'm not sure how I would have handled it if he was crying... =(
When you get to the surgery waiting room you'll check in with the people at the desk, then you can go get something to eat at the cafe or do anything else you need to do. Food and drink are welcome in the room, there is a courtesy phone and a TV. If you're there in the morning, a courtesy cart comes by between 10 and 11 with some complimentary snacks.
After the surgery is over, the surgeon will come tell you how it went, then once the child is waking up they will call for one parent (only one at that point) to go meet the child in post-op. You will stay there until the child is comfortable, then you will meet up with any other family members and head up to the 4th floor to a room (unless it's outpatient surgery, in which case you'll stay in the PACU area until you go home, which is usually as soon as the child has taken in enough liquids).
For me, this is where the hardest part begins. Ethan tends to wake up quickly and angrily, but the nurses are good at getting his pain managed and with some comforting he settles down fairly quickly. Then the next day is spent comforting and feeding and navigating several monitors plus an IV. Not to mention attempting to work in pumping milk and catching a few minutes for myself to eat and catch a few winks. We have been really lucky that Ethan hasn't had to stay for more than 24 hours as of yet; getting released and having all of those wires disconnected is always the greatest relief. Then we pack up, go home, and pray that it's not too long before Ethan gets to sleeping through the night again so that we're not perpetually exhausted. Yay for the end of surgery day!
Saturday, November 7, 2009
Adopting a child with a cleft
This is the experience of the Morningstar family. Thank you so much to them for sharing! If you would like to read more about their experience, you can see their wonderful blog here.
Parenting is not for the faint of heart. Adoptive parenting is for those with extra guts. And adoptive parenting of a child with a cleft palate? Well, that's left for those with an extra well-developed sense of adventure.
In January 2009 we traveled to Karaganda, Kazakhstan to meet and welcome 22-month-old Alexandra Grace Morningstar into our family.
Sasha (short for Alexandra) was born with a wide bilateral cleft palate and (maybe) with mild Pierre Robin Sequence (PRS) and spent most of her early childhood in hospitals and the Botakoz Baby House. When we first learned about Sasha's cleft palate, we were torn - we knew that this was an easily correctable condition here in the US, but we also knew that it compounded the scads of the unknowns that are intrinsic to adoption. So we started researching.
After talking to families in similar positions to our own, researching on the web, and talking with the cleft palate team at our local children's hospital, we learned the following:
Welcoming Sasha into our family had been one of the most incredible and rewarding experiences of our lives. If you have the opportunity to adopt a cleft child, we definitely recommend that you evaluate and seriously consider your ability to care for this little one's medical, physical, emotional, and spiritual needs. And if this is the right path for your family, then go for it! Your child will teach you how to care for her, your doctors will guide you through surgery and therapy, and each member of your family will be richer and deeper for the experience.
Parenting is not for the faint of heart. Adoptive parenting is for those with extra guts. And adoptive parenting of a child with a cleft palate? Well, that's left for those with an extra well-developed sense of adventure.In January 2009 we traveled to Karaganda, Kazakhstan to meet and welcome 22-month-old Alexandra Grace Morningstar into our family.
Sasha (short for Alexandra) was born with a wide bilateral cleft palate and (maybe) with mild Pierre Robin Sequence (PRS) and spent most of her early childhood in hospitals and the Botakoz Baby House. When we first learned about Sasha's cleft palate, we were torn - we knew that this was an easily correctable condition here in the US, but we also knew that it compounded the scads of the unknowns that are intrinsic to adoption. So we started researching.
After talking to families in similar positions to our own, researching on the web, and talking with the cleft palate team at our local children's hospital, we learned the following:- These kids are survivors. Our daughter would not have lived through her challenging early childhood without a strong will to survive (and believe us, she is strong willed!). Orphans with clefts have learned to successfully navigate their environments without a lot of special treatment from the world around them.
- Cleft kiddos have learned to make feeding work for them despite physical challenges. You are not going to break them and they're not going to starve when you get home just because you don't know the first thing about cleft palates. They have mastered their own feeding techniques, which often include shaking their heads to move food around their mouths, because they can't use their palates for leverage
- Don't be too worried about early childhood delays. Because of a far harder-than-average start in life, it is normal for cleft orphans to be very small and significantly speech delayed. "Normal" delays from institutional care can be compounded by the cleft palate. Our daughter was a mere 14 pounds at 18 months of age and had only one discernible word when we met her ("kukla", which means doll in Russian). In the past months her vocabulary has simply exploded and her words become increasingly more discernible as she learns to use her "new" mouth and works with her speech therapist.
- You probably just have to accept that you'll never know what caused the cleft. Maybe you'll get some family history that can help you understand what happened, maybe genetic counseling will help you diagnose the root cause, but most likely it will be a part of your child's biological and gestational history that you'll never really have the answers you want. Many biological parents of cleft kids walk this path as well.
- Research your medical insurance and get your insurance ducks in a row before traveling
- Choose a hospital and surgeon. After examining your child they will finalize the treatment path, but choosing a surgeon before travel will eliminate one more to do item when you return, exhausted and overwhelmed, from your adoption travels
- Learn baby signs. Depending on your child's age, we definitely recommend learning and using sign language with your child. Sasha had physical impediments to speech, but she latched on to sign language within our first few weeks together and still often uses signs to communicate. Using sign language with Sasha was a godsend.
- Talk with cleft adoptive parents. They will encourage you, remind you that you are up to this challenge, and share their own tips and tricks that were helpful in their first months home with their child. You can find other cleft adoptive parents through Yahoo and Google groups and your domestic and international agencies.
- Be real with yourself and have extra grace for your spouse. Try to mentally adjust to the idea that you will probably have more than "average" (whatever that means) difficulty in your first few months home with your child. The fatigue and simple overwhelming nature of bringing a child into your home will be compounded by doctor's visits, surgery, speech therapy, and lots of chocolate running out of your child's nose before the cleft is repaired (this is adorable, by the way). It's hard. And it's worth it.
Welcoming Sasha into our family had been one of the most incredible and rewarding experiences of our lives. If you have the opportunity to adopt a cleft child, we definitely recommend that you evaluate and seriously consider your ability to care for this little one's medical, physical, emotional, and spiritual needs. And if this is the right path for your family, then go for it! Your child will teach you how to care for her, your doctors will guide you through surgery and therapy, and each member of your family will be richer and deeper for the experience.
Wednesday, November 4, 2009
A Beautiful Child
Virginia Smiles, an organization for families of children with clefts in Virginia, has this wonderful video that I would definitely recommend to new/expecting parents. You can view it here. It is mostly interviews with parents who share their thoughts and experiences, and is really touching. Thank you to Anna for sharing this!
Enjoy!
Enjoy!
Monday, November 2, 2009
Counting Down to Surgery
This is an excerpt from my personal blog from before Ethan's second surgery.
We are down to 2 days before Ethan's lip and nose repair, and I still don't think it has hit me yet. I don't know what exactly is supposed to be hitting me, but it seems like something should. I am always a little hesitant to talk a lot about how I'm feeling with all this (particularly on a blog), but it has helped me to hear other people's experiences through the cleft palate group on Yahoo! Groups here in Utah, so I'll share at least a little.
I think that I went through a lot of emotions between the time we found out that Ethan had a cleft and the time he was born, but since then I have really felt like things have been pretty normal overall. But I think that this surgery will be a bit harder, because I am slowly realizing that pretty soon I won't be seeing the same little face anymore.
I think that if Ethan were really sick and suffering already it would seem natural to have him go into surgery because it would only improve things. It's a little tougher taking my little guy in when he is so happy and doing so well; I almost feel like I'm inflicting it on him, even though I know it isn't really an option not to do it, and he really will be grateful his whole life that I did it. And compared with so many other conditions that exist, Ethan's is relatively mild, and we feel really grateful for that, too.
So I am bracing myself a little bit for whatever it is that I'm sure will hit me when we take him in on Thursday, taking a little extra time to be grateful and enjoy that wide little smile while we have it, and looking forward to all of this being overwith!
We are down to 2 days before Ethan's lip and nose repair, and I still don't think it has hit me yet. I don't know what exactly is supposed to be hitting me, but it seems like something should. I am always a little hesitant to talk a lot about how I'm feeling with all this (particularly on a blog), but it has helped me to hear other people's experiences through the cleft palate group on Yahoo! Groups here in Utah, so I'll share at least a little.
I think that I went through a lot of emotions between the time we found out that Ethan had a cleft and the time he was born, but since then I have really felt like things have been pretty normal overall. But I think that this surgery will be a bit harder, because I am slowly realizing that pretty soon I won't be seeing the same little face anymore.
I think that if Ethan were really sick and suffering already it would seem natural to have him go into surgery because it would only improve things. It's a little tougher taking my little guy in when he is so happy and doing so well; I almost feel like I'm inflicting it on him, even though I know it isn't really an option not to do it, and he really will be grateful his whole life that I did it. And compared with so many other conditions that exist, Ethan's is relatively mild, and we feel really grateful for that, too.
So I am bracing myself a little bit for whatever it is that I'm sure will hit me when we take him in on Thursday, taking a little extra time to be grateful and enjoy that wide little smile while we have it, and looking forward to all of this being overwith!
Milk Money
I was reading some random site online like I like to do, and saw several people mention that they spend about $120 a month on baby formula. So I proudly announced to my husband that by pumping I was saving us $120 a month. Being the numbers man that he is, he of course had to spoil it by figuring out how much per hour I was "making" by pumping. Six times a day, times about half an hour each time for the whole ordeal, times 30 days a month... Turns out I am "making" $1.33 per hour. Awesome.
How do I deal with the emotions of my child's surgery?
One mom wrote the following advice:
"I think you're right that one of the hardest parts of this whole process is to not allow your worry or grief or anxiousness to affect your child. I thought I handled it really well... except for the desperate sobbing :)
"I think it's important for you to take plenty of breaks while in the hospital and to eat and sleep when you can. You'll be far more able to take care of your child if you're able to take decent care of yourself as well.
"Our experience at Primary Children's was great - the nurses really worked with us to keep our daughter as comfortable as possible. Just know, and try to prepare your heart, that those first few days are really hard and it will get a little better every day."
There is also a post that I wrote just before my son's second surery here.
"I think you're right that one of the hardest parts of this whole process is to not allow your worry or grief or anxiousness to affect your child. I thought I handled it really well... except for the desperate sobbing :)
"I think it's important for you to take plenty of breaks while in the hospital and to eat and sleep when you can. You'll be far more able to take care of your child if you're able to take decent care of yourself as well.
"Our experience at Primary Children's was great - the nurses really worked with us to keep our daughter as comfortable as possible. Just know, and try to prepare your heart, that those first few days are really hard and it will get a little better every day."
There is also a post that I wrote just before my son's second surery here.
Cleft No More - Sasha's Cleft Repair
This is Jamie Morningstar's experience with her daughter's cleft palate repair at PCMC. They adopted their little girl from Kazakhstan earlier this year. For more of their experiences, you can visit their blog here. Thank you, Jamie, for sharing!
Today will not soon be forgotten in the Morningstar family! It started well and ended well... the middle part wasn't quite so good but hopefully that part will fade from memory quickly.
Sasha's surgery was scheduled for 2:30 pm and she wasn't allowed to eat all day. I thought that would be truly awful, but to be honest it was rather disconcertingly fine. Steve has a theory that since her meals were so regimented at the baby house, she hasn't yet learned to listen to her body when it comes to being hungry and full. I'm not sure if that's true or not, but you would think that a two-year-old would have strong negative opinions about not being fed all day and Sash just took it like a champ. We kept her busy and distracted and she did ask for food a few times, but surprisingly it was never a battle.
We got to Primary Children's Medical Center at 1:15 and went through the intake process just fine. We were told that the doctor was running a little behind (no big surprise there) and had a good time playing in the pre-surgery waiting room. Then we were told that the doctor was running a lot behind and we probably wouldn't get in to surgery until 4. Sigh.
But Sasha was fabulous. She happily blew bubbles, ate bubble solution (she wasn't supposed to eat or drink, but I don't think bubble solution counts), took rides in the little plastic cars, and otherwise occupied herself for the full 2 hour wait! What a kid.
At 4:00 she had a sedative and her craniofacial doc and ENT (Ear Nose Throat doc) chatted with us about the procedures. By that point she was really loopy and was happy to lay down in the wagon and go with the anesthesiologist. It was go time!
Steve and I made ourselves comfortable in the parent's waiting room and just a few minutes later the ENT came out and told us that the ear tubes went in just fine and she has infections in both of her ears (not super-surprising, that's the whole reason she's getting the tubes) but that the normal drops they prescribe after inserting tubes should also take care of the infection. One procedure down, one to go!
The cleft palate repair took another two hours, but it all went just as expected and the plastic surgeon was able to get all of Sasha's mouth parts into their proper place. He remarked again about how wide her cleft was - we just responded that when we Morningstars commit to something, we go all the way!
He was able to get the whole center part of her palate just where it belongs, which is awesome. Right now, it sort of looks like she has a strip of plate down the center of her mouth and she still has gaps on either side, but Dr. Siddiqi said that's normal and those gaps will heal right up in a couple of weeks without additional surgeries.
After meeting with Dr. Siddiqi after he was done with Sasha's surgery, it was time to go get our baby girl from post op. Begin suckiness.
As she was sedated, the swelling in her mouth from the operation started to obstruct her airway, so they gave her meds to wake her up from the anesthesia instead of letting her rouse naturally. Those meds immediately flushed all of the pain meds and sedatives from her system, which meant that she was feeling everything. I walked into post-op past this kid screaming bloody murder thinking, "wow, I'm glad that's not my kid" - you guessed it, that was my kid.
Of course, the choice between a breathing baby in pain and a baby who isn't breathing is an easy one to make! We spent the next two hours with a screaming, hurting, bleeding, restrained, miserable, and angry Sasha trying to calm her down and keep her blood oxygen levels up. It was awful. Really, beyond words, awful.
But we have a great nurse who worked really hard to find the right meds that were safe for Sasha and kept the edge off of her pain and by about 9 pm she had finally calmed down enough to sleep. Her pulse has stopped racing, blood pressure is normal again, her oxygen levels are doing great, and she's finally at peace.
So we're hoping that tomorrow will be a whole new day. She already had a few ounces of apple juice to drink, which is awesome, and we're allowed to feed her mashed potatoes if she wakes up and is hungry. The arm restraints come off tomorrow, which is fantastic because Steve and I were expecting her to have to wear them for weeks. We may be discharged tomorrow or we may need to wait until Friday, we'll just wait and see what tomorrow brings and how quickly she bounces back.
It's so funny - she already sounds different! Even her crying doesn't sound like it used to. Before surgery, I was sort of mourning her cleft. That probably sounds insane, but it's been a big part of the Sasha we know and love and I was sad to see it go. But now that I hear the beginnings of what her little voice is going to sound like (granted, those beginning were mostly screams, making it all slightly less touching) I know that this is right and good.
Today will not soon be forgotten in the Morningstar family! It started well and ended well... the middle part wasn't quite so good but hopefully that part will fade from memory quickly.
Sasha's surgery was scheduled for 2:30 pm and she wasn't allowed to eat all day. I thought that would be truly awful, but to be honest it was rather disconcertingly fine. Steve has a theory that since her meals were so regimented at the baby house, she hasn't yet learned to listen to her body when it comes to being hungry and full. I'm not sure if that's true or not, but you would think that a two-year-old would have strong negative opinions about not being fed all day and Sash just took it like a champ. We kept her busy and distracted and she did ask for food a few times, but surprisingly it was never a battle.
We got to Primary Children's Medical Center at 1:15 and went through the intake process just fine. We were told that the doctor was running a little behind (no big surprise there) and had a good time playing in the pre-surgery waiting room. Then we were told that the doctor was running a lot behind and we probably wouldn't get in to surgery until 4. Sigh.
But Sasha was fabulous. She happily blew bubbles, ate bubble solution (she wasn't supposed to eat or drink, but I don't think bubble solution counts), took rides in the little plastic cars, and otherwise occupied herself for the full 2 hour wait! What a kid.
At 4:00 she had a sedative and her craniofacial doc and ENT (Ear Nose Throat doc) chatted with us about the procedures. By that point she was really loopy and was happy to lay down in the wagon and go with the anesthesiologist. It was go time!Steve and I made ourselves comfortable in the parent's waiting room and just a few minutes later the ENT came out and told us that the ear tubes went in just fine and she has infections in both of her ears (not super-surprising, that's the whole reason she's getting the tubes) but that the normal drops they prescribe after inserting tubes should also take care of the infection. One procedure down, one to go!
The cleft palate repair took another two hours, but it all went just as expected and the plastic surgeon was able to get all of Sasha's mouth parts into their proper place. He remarked again about how wide her cleft was - we just responded that when we Morningstars commit to something, we go all the way!
He was able to get the whole center part of her palate just where it belongs, which is awesome. Right now, it sort of looks like she has a strip of plate down the center of her mouth and she still has gaps on either side, but Dr. Siddiqi said that's normal and those gaps will heal right up in a couple of weeks without additional surgeries.
After meeting with Dr. Siddiqi after he was done with Sasha's surgery, it was time to go get our baby girl from post op. Begin suckiness.
As she was sedated, the swelling in her mouth from the operation started to obstruct her airway, so they gave her meds to wake her up from the anesthesia instead of letting her rouse naturally. Those meds immediately flushed all of the pain meds and sedatives from her system, which meant that she was feeling everything. I walked into post-op past this kid screaming bloody murder thinking, "wow, I'm glad that's not my kid" - you guessed it, that was my kid.
Of course, the choice between a breathing baby in pain and a baby who isn't breathing is an easy one to make! We spent the next two hours with a screaming, hurting, bleeding, restrained, miserable, and angry Sasha trying to calm her down and keep her blood oxygen levels up. It was awful. Really, beyond words, awful.
But we have a great nurse who worked really hard to find the right meds that were safe for Sasha and kept the edge off of her pain and by about 9 pm she had finally calmed down enough to sleep. Her pulse has stopped racing, blood pressure is normal again, her oxygen levels are doing great, and she's finally at peace.So we're hoping that tomorrow will be a whole new day. She already had a few ounces of apple juice to drink, which is awesome, and we're allowed to feed her mashed potatoes if she wakes up and is hungry. The arm restraints come off tomorrow, which is fantastic because Steve and I were expecting her to have to wear them for weeks. We may be discharged tomorrow or we may need to wait until Friday, we'll just wait and see what tomorrow brings and how quickly she bounces back.
It's so funny - she already sounds different! Even her crying doesn't sound like it used to. Before surgery, I was sort of mourning her cleft. That probably sounds insane, but it's been a big part of the Sasha we know and love and I was sad to see it go. But now that I hear the beginnings of what her little voice is going to sound like (granted, those beginning were mostly screams, making it all slightly less touching) I know that this is right and good.
Friday, October 30, 2009
Dealing with Insensitivity
I have a lot to learn from my husband. I am generally pretty easy-going as far as dealing with people, but if you do something potentially offensive to a loved one, I turn into a fighter (I'm soon to be a lawyer; what can I say?). While John brushes things off, I get offended on his behalf. But he doesn't get ruffled, and sets a great example.
The last two years there has been a 5K and 1 mile walk in Provo Canyon that benefits Project Smile, a group that travels to developing countries to provide surgeries for children with clefts. We did the 1 mile walk this year (Ethan was a month old, and I wasn't about to be doing any running...). A short time ago John was wearing his shirt from the race in one of his classes, and a classmate noticed it. He asked if John knew what Project Smile was, and John confirmed that he did. Then, with a smirk and a half-laugh, he asked John "Have you ever seen one of those kids?" and started to make some kind of face. Before he got the chance to go any farther, John calmly said, "Before you say anything that you may regret later, my son was born with a bilateral cleft lip and palate." The student became understandably sheepish, then attempted a recovery by saying that his company printed the signs for the 5K.
My brother-in-law, who is in the same class and heard the exchange, jokingly commented to John about what he would have liked to do to that particular student's smile. I was with him on that one... But I am definitely proud of John's reaction and that he redirected the conversation and then let it go. And it got me thinking again about something I've contemplated in the past: how do we help people to be sensitive to facial differences? Surely that student will think twice in the future before mocking a birth defect. Here are a few additional thoughts and observations that I have had:
The last two years there has been a 5K and 1 mile walk in Provo Canyon that benefits Project Smile, a group that travels to developing countries to provide surgeries for children with clefts. We did the 1 mile walk this year (Ethan was a month old, and I wasn't about to be doing any running...). A short time ago John was wearing his shirt from the race in one of his classes, and a classmate noticed it. He asked if John knew what Project Smile was, and John confirmed that he did. Then, with a smirk and a half-laugh, he asked John "Have you ever seen one of those kids?" and started to make some kind of face. Before he got the chance to go any farther, John calmly said, "Before you say anything that you may regret later, my son was born with a bilateral cleft lip and palate." The student became understandably sheepish, then attempted a recovery by saying that his company printed the signs for the 5K.
My brother-in-law, who is in the same class and heard the exchange, jokingly commented to John about what he would have liked to do to that particular student's smile. I was with him on that one... But I am definitely proud of John's reaction and that he redirected the conversation and then let it go. And it got me thinking again about something I've contemplated in the past: how do we help people to be sensitive to facial differences? Surely that student will think twice in the future before mocking a birth defect. Here are a few additional thoughts and observations that I have had:
- Most people want to be sensitive and supportive when they talk to us about our kids, but don't know how. I try not to take offense when I see an effort being made, even if the way the words come out aren't exactly how I would like them. For example, before my son's lip and nose repair, I had a few people ask "Was he born like that?" My initial urge was to reply sarcastically, "No, I did that to him. What do you think?" But I refrained, because I know that if they are asking, it is usually because they don't know how to ask about a birth defect in a sensitive way. The word "defect" is a pretty harsh word when used in reference to a baby, so I notice that people avoid it, which is nice, but sometimes they have a hard time articulating the same idea with a different word.
- Children tend to stare, and also tend to say everything that comes into their heads. I have heard lots of kids commenting that "He has an owie!" or "Mommy, did he go to the hospital?" or "How come his mouth is like that?" I figure that by explaining rather than being defensive, I am helping one more child to grow up to be a more sensitive person. And when I demonstrate that I don't mind their childrens' curiosity, parents feel more free to ask questions, too.
- When I deal with people who are insensitive, I try to think about what I would like to teach my son about dealing with the same insensitivity as he grows. My hope is that my reactions can show him that we can be kind to others and share rather than getting angry or allowing our own self-esteem to depreciate.
Wednesday, October 28, 2009
A little self-congratulation?
How to change a Logan's Bow at 3:30 am when it falls off (without waking up your husband and all your neighbors):
1. Slowly remove the medical tape that is no longer holding the metal bow on properly from your baby's face in such a way that he doesn't scream. Don't mind that the nurses at the hospital that did this last cut the tape so long that it went into your baby's hair, so having it pulled off may be like getting his little sideburns waxed.
2. Cradle your already-cranky, recovering baby that has only let you sleep maybe 10 out of the last 72 hours in one arm while you collect supplies: medical tape, scissors, 3M prep pad.
3. Set your supplies down within arm's reach, then sit on your exercise ball, still with the baby in one arm, and bounce lightly to keep him snoozing, since you're not supposed to let him cry (ha!) especially without the bow keeping pressure off his sutures.
4. Hold the roll of medical tape in the same hand that's holding the baby, and with the other, cut the tape to the appropriate width and length and secure it on the bow. Don't stop bouncing, or he'll be screaming shortly.
5. Open the 3M prep pad that makes your sweet baby's face smell like Scotch tape (and which, by the way, your baby hates), and rub it on his cheeks where the tape will go, still without waking him up. Put the pad back in it's little packet and make sure to save it, since you only have 5 of these to last you a month, and they don't carry them at the local pharmacy.
6. With one hand, somehow squeeze your baby's cheeks in slightly and tape the bow down at the same time. Make sure it's stuck down tight in just the right spot, or you may have to do all this all over again.
7. Now that your baby is fast asleep, get him to take his baby Tylenol and drink another ounce of milk so that he doesn't wake up again in 10 minutes, hungry and in pain. Then place him quietly back in his crib to slumber while you stay up for another 30 minutes to squeeze out his next meal, and maybe blog about the whole experience while you're at it.
I wrote this post for my personal blog in a moment of euphoria after pulling off what I just described. I hope that it brings you a smile, and reminds us all that we should both give ourselves some credit for rising to the occasion when our kids need it and be thankful for the help we receive - both earthly and divine.
1. Slowly remove the medical tape that is no longer holding the metal bow on properly from your baby's face in such a way that he doesn't scream. Don't mind that the nurses at the hospital that did this last cut the tape so long that it went into your baby's hair, so having it pulled off may be like getting his little sideburns waxed.
2. Cradle your already-cranky, recovering baby that has only let you sleep maybe 10 out of the last 72 hours in one arm while you collect supplies: medical tape, scissors, 3M prep pad.
3. Set your supplies down within arm's reach, then sit on your exercise ball, still with the baby in one arm, and bounce lightly to keep him snoozing, since you're not supposed to let him cry (ha!) especially without the bow keeping pressure off his sutures.
4. Hold the roll of medical tape in the same hand that's holding the baby, and with the other, cut the tape to the appropriate width and length and secure it on the bow. Don't stop bouncing, or he'll be screaming shortly.
5. Open the 3M prep pad that makes your sweet baby's face smell like Scotch tape (and which, by the way, your baby hates), and rub it on his cheeks where the tape will go, still without waking him up. Put the pad back in it's little packet and make sure to save it, since you only have 5 of these to last you a month, and they don't carry them at the local pharmacy.
6. With one hand, somehow squeeze your baby's cheeks in slightly and tape the bow down at the same time. Make sure it's stuck down tight in just the right spot, or you may have to do all this all over again.
7. Now that your baby is fast asleep, get him to take his baby Tylenol and drink another ounce of milk so that he doesn't wake up again in 10 minutes, hungry and in pain. Then place him quietly back in his crib to slumber while you stay up for another 30 minutes to squeeze out his next meal, and maybe blog about the whole experience while you're at it.
I wrote this post for my personal blog in a moment of euphoria after pulling off what I just described. I hope that it brings you a smile, and reminds us all that we should both give ourselves some credit for rising to the occasion when our kids need it and be thankful for the help we receive - both earthly and divine.
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