Sunday, September 28, 2008
LPA-Utah
Our little family had our very first get-together with members of the Utah chapter of LPA (Little People of America). This is actually our first interaction with other people dealing with dwarfism. It was such a fun experience and everyone was so welcoming and helpful. Both Vanessa and Nicole became instant buddies with everyone (a shocker, I know), and didn't want to leave when it was over. Matt and I also enjoyed getting to know some of the LP's and their families who regularly attend these events and had so much information, understanding, and encouragement to share. We are looking forward to getting to know members of the group better, and attending their upcoming Halloween party.
Friday, September 26, 2008
Our Favorite (Sleep) Things
I have so many other things to blog about (trips we had this summer, cute things the girls are doing, medical updates, etc.), but I thought it would be nice to share a few things that just make us happy.... Since there are many, here are the ones that make us feel cozy:
Nicole's doggy is her cuddle buddy...she doesn't like sleeping without him, although curiously he often ends up covering her face! Sometimes when she wakes up in a cuddly mood (which is fortunately still pretty often), she requests that her "woof woof" stay with her. If you refer to the last post, you might get a sighting of him. He has been her friend through travel and surgery, and receives a lot of hugs for his service.
Although Vanessa loves all her princess stuff, and her thumb is a given, her current favorite is her bright orange fleece blanket she won for dancing with a (guy in a suit) chicken at the Oregon State Fair. When we tried to share it once momentarily, she politely, but firmly, requested it back. She wants to be covered with that blanket in heat or cold. Needless to say, I have to sneak it to the wash!
I lumped Matt's and mine together as they are somewhat shared. For our wedding, my favorite gift was our double pillow-top bed. Although parenthood does not always allow as much sleep as I like, our bed is always a welcome sight at the end of the day (although not usually as neat as pictured here). The hardest part is leaving it!
Technically, there is one other one for Matt that should be pictured...the couch. No, I do not make him sleep there for any reason. He just likes relaxing there after a long day, and there are many times I come down in the morning to find him still there! Poor guy, always so tired!
In case you were wondering, Matt does not sleep with his guitar (although I think he has been accused of it in the past). Recently he has discovered it provides a great bedtime bonding moment for him and the girls. He plays and sings as they (ideally) drift off to sleep. Vanessa's request? "Drops of Rain" (aka "Thank You" by Led Zeppelin). Nicole's? Anything, so long as Daddy plays and sings. Mine? I agree with both Nicole and Vanessa, although I do love the one Matt wrote while we were dating.
Nicole's doggy is her cuddle buddy...she doesn't like sleeping without him, although curiously he often ends up covering her face! Sometimes when she wakes up in a cuddly mood (which is fortunately still pretty often), she requests that her "woof woof" stay with her. If you refer to the last post, you might get a sighting of him. He has been her friend through travel and surgery, and receives a lot of hugs for his service.
Although Vanessa loves all her princess stuff, and her thumb is a given, her current favorite is her bright orange fleece blanket she won for dancing with a (guy in a suit) chicken at the Oregon State Fair. When we tried to share it once momentarily, she politely, but firmly, requested it back. She wants to be covered with that blanket in heat or cold. Needless to say, I have to sneak it to the wash!
I lumped Matt's and mine together as they are somewhat shared. For our wedding, my favorite gift was our double pillow-top bed. Although parenthood does not always allow as much sleep as I like, our bed is always a welcome sight at the end of the day (although not usually as neat as pictured here). The hardest part is leaving it!
Technically, there is one other one for Matt that should be pictured...the couch. No, I do not make him sleep there for any reason. He just likes relaxing there after a long day, and there are many times I come down in the morning to find him still there! Poor guy, always so tired!
In case you were wondering, Matt does not sleep with his guitar (although I think he has been accused of it in the past). Recently he has discovered it provides a great bedtime bonding moment for him and the girls. He plays and sings as they (ideally) drift off to sleep. Vanessa's request? "Drops of Rain" (aka "Thank You" by Led Zeppelin). Nicole's? Anything, so long as Daddy plays and sings. Mine? I agree with both Nicole and Vanessa, although I do love the one Matt wrote while we were dating.
Monday, September 08, 2008
The results...
So, alls well that ends well! Thanks to prayers and blessings, good doctors, and one tough little girl, the surgery is over and Nicole is doing great.
As is customary, Nicole's food/drink intake was limited the night before. This was fine, as she slept during her fast, but since her first request upon waking is a drink, I thought I'd be "smart" and give her a bottle of juice just before the cut-off. That backfired as it made her gag and throw up at 4:30am all over our bed. Fortunately, no harm done, but it proved for an interesting night.
We dropped Vanessa off for a morning of fun at Adam and Kristie's house (complete with a special breakfast and trip to the library...thanks you guys!), and reported first thing at the hospital. Nicole got to put on some comfy hospital jammies and even got a "princess crown" to wear that she was pretty excited about.
We then met with the anesthesiologist. Although we knew this was a minor surgery, her small airways that created the need for surgery were the same factors that worried us about the procedure, especially the anesthesia. We were pleased to find out that this anesthesiologist has actually worked with other children with dwarfism and was quite familiar with their particular needs/challenges. Here's where we breathed a big sigh of relief!
Although the wait during surgery felt long, it went pretty quick by the time Dr. Riddle (our ENT) dropped by to tell us how the procedure went. He said she did great and everything went fine. He proceeded with both the tubes and adenoids, but due to the fact that her tonsils and adenoids are actually quite small, he left her tonsils in.
Healing and scar tissue in this type of surgery can affect airway space, and without any obstruction caused by tonsils, their removal would have done more harm than good. He did mention that her craniofacial structure is small, but that her tongue is large in comparison. It was actually creating the biggest obstruction issue. This means we go need to see him and Dr. Pfeffer (sleep specialist) again to assess whether to do CPAP or another option (other surgeries often done in this case are also risky for someone with Nicole's structure). Still, as severe as her case is, something needs to be done to prevent strain on her heart and adverse effects on her development that would eventually occur without treatment. More fun news.
The anesthesiologist also stopped by and reported that she did well, but even given his experience, she was hard to intubate. Poor girl with her tiny airways!
Still, the "worst" was over, and now we knew her recovery would be a lot easier. (Ah, our silver lining). We had to wait another "long" stretch of time, then greeted her in her hospital room. The first word out of her mouth? You guessed it, "Mommy!"
After we both comforted her and got her settled in her fancy hospital crib, I snuggled up with her to get her to rest while Matt picked up Vanessa and some goodies. After she and I both had a good nap, we reunited as a family and partied with dollar-store toys and lunch. I think Vanessa had more fun in the crib than Nicole.
The rest of our stay was nice and uneventful. Dr. Riddle requested we still stay overnight to track Nicole's oxygen levels. Since she recovered from anesthesia quickly and had lots of energy, we just played and ate most of the time. We discovered the lovely playroom down the hall (she unfortunately was the only kid there who felt well enough to play that day, I think), and Nicole quickly fell in love with a little red wagon. She made her "rounds" pushing that thing down the hallway, making friends with the nurses and squealing with delight. They even brought out bubbles for her that only added to the fun!
As Matt had the chore of tending to things at home, he and Vanessa were busy preparing dinner and getting stuff done (well, okay, some of that time Vanessa got to watch some movies). Nicole was missing them pretty bad, especially since she's rarely gone from Vanessa. As it got later in the day, she wandered around with her wagon, stopping at each door and peering in as she called out, "Nena, Nena." It was sad and very sweet at the same time. I must confess I felt the same way, missing half our family and beginning to feel ready to leave our "cage."
We had one last get together with Matt and Vanessa (with plenty of hugs to go around), then called it a night. Although Nicole was wheezy and restless during the night, she didn't need oxygen that night (at least by hospital standards), and the next morning we were able to pack up and head home. Matt came to get us, and the girls got to ride out in style in a big wagon. What a great send-off!
If you are interested in learning a little more about sleep apnea in children, here is a video clip that does a pretty good summary of what is involved for an "average" kid.
As is customary, Nicole's food/drink intake was limited the night before. This was fine, as she slept during her fast, but since her first request upon waking is a drink, I thought I'd be "smart" and give her a bottle of juice just before the cut-off. That backfired as it made her gag and throw up at 4:30am all over our bed. Fortunately, no harm done, but it proved for an interesting night.
We dropped Vanessa off for a morning of fun at Adam and Kristie's house (complete with a special breakfast and trip to the library...thanks you guys!), and reported first thing at the hospital. Nicole got to put on some comfy hospital jammies and even got a "princess crown" to wear that she was pretty excited about.
We then met with the anesthesiologist. Although we knew this was a minor surgery, her small airways that created the need for surgery were the same factors that worried us about the procedure, especially the anesthesia. We were pleased to find out that this anesthesiologist has actually worked with other children with dwarfism and was quite familiar with their particular needs/challenges. Here's where we breathed a big sigh of relief!
Although the wait during surgery felt long, it went pretty quick by the time Dr. Riddle (our ENT) dropped by to tell us how the procedure went. He said she did great and everything went fine. He proceeded with both the tubes and adenoids, but due to the fact that her tonsils and adenoids are actually quite small, he left her tonsils in.
Healing and scar tissue in this type of surgery can affect airway space, and without any obstruction caused by tonsils, their removal would have done more harm than good. He did mention that her craniofacial structure is small, but that her tongue is large in comparison. It was actually creating the biggest obstruction issue. This means we go need to see him and Dr. Pfeffer (sleep specialist) again to assess whether to do CPAP or another option (other surgeries often done in this case are also risky for someone with Nicole's structure). Still, as severe as her case is, something needs to be done to prevent strain on her heart and adverse effects on her development that would eventually occur without treatment. More fun news.
The anesthesiologist also stopped by and reported that she did well, but even given his experience, she was hard to intubate. Poor girl with her tiny airways!
Still, the "worst" was over, and now we knew her recovery would be a lot easier. (Ah, our silver lining). We had to wait another "long" stretch of time, then greeted her in her hospital room. The first word out of her mouth? You guessed it, "Mommy!"
After we both comforted her and got her settled in her fancy hospital crib, I snuggled up with her to get her to rest while Matt picked up Vanessa and some goodies. After she and I both had a good nap, we reunited as a family and partied with dollar-store toys and lunch. I think Vanessa had more fun in the crib than Nicole.
The rest of our stay was nice and uneventful. Dr. Riddle requested we still stay overnight to track Nicole's oxygen levels. Since she recovered from anesthesia quickly and had lots of energy, we just played and ate most of the time. We discovered the lovely playroom down the hall (she unfortunately was the only kid there who felt well enough to play that day, I think), and Nicole quickly fell in love with a little red wagon. She made her "rounds" pushing that thing down the hallway, making friends with the nurses and squealing with delight. They even brought out bubbles for her that only added to the fun!
As Matt had the chore of tending to things at home, he and Vanessa were busy preparing dinner and getting stuff done (well, okay, some of that time Vanessa got to watch some movies). Nicole was missing them pretty bad, especially since she's rarely gone from Vanessa. As it got later in the day, she wandered around with her wagon, stopping at each door and peering in as she called out, "Nena, Nena." It was sad and very sweet at the same time. I must confess I felt the same way, missing half our family and beginning to feel ready to leave our "cage."
We had one last get together with Matt and Vanessa (with plenty of hugs to go around), then called it a night. Although Nicole was wheezy and restless during the night, she didn't need oxygen that night (at least by hospital standards), and the next morning we were able to pack up and head home. Matt came to get us, and the girls got to ride out in style in a big wagon. What a great send-off!
If you are interested in learning a little more about sleep apnea in children, here is a video clip that does a pretty good summary of what is involved for an "average" kid.
Wednesday, September 03, 2008
Surgery
Nicole will be having surgery this Friday (5th) for a couple reasons:
1) Ear tubes: we hope the near-constant infections will cease after this. Between the pain of infection, and the stomach issues resulting from antibiotics, we have been anxious for this all to end!
2) Tonsils and adenoids: Results from the sleep study showed she does have severe sleep apnea, and needs more oxygen. We could have done a CPAP (meaning an oxygen mask she'd have to wear every night...not very easy with a 15-month-old), or surgery (removing these will increase airway). Since she has to be put under anesthesia already for the tubes, this seemed like a doable option and a decent time to do it.
Bad News:
baby in pain
the surgery itself
overnight hospital stay
(more) drugs
delayed anniversary (our 5th)
nervous mommy (probably daddy too)
anesthesia/possible airway issues
Good News:
just getting it done!
great surgeon
sleep relief for Nicole (and perhaps others, too!)
relief of ear pain
ease of breathing/possible elimination of apnea
prayers/blessings
Medicaid
less spontaneous trips to pediatrician (we hope)
chocolate (for mommy and later Nicole, too)
snuggle time (whole family)
P.S. Vanessa thankfully is doing well through all of this...yet we are beginning to wonder if she should do a sleep study just to be safe (are we gluttons for punishment or what?!).
1) Ear tubes: we hope the near-constant infections will cease after this. Between the pain of infection, and the stomach issues resulting from antibiotics, we have been anxious for this all to end!
2) Tonsils and adenoids: Results from the sleep study showed she does have severe sleep apnea, and needs more oxygen. We could have done a CPAP (meaning an oxygen mask she'd have to wear every night...not very easy with a 15-month-old), or surgery (removing these will increase airway). Since she has to be put under anesthesia already for the tubes, this seemed like a doable option and a decent time to do it.
Bad News:
baby in pain
the surgery itself
overnight hospital stay
(more) drugs
delayed anniversary (our 5th)
nervous mommy (probably daddy too)
anesthesia/possible airway issues
Good News:
just getting it done!
great surgeon
sleep relief for Nicole (and perhaps others, too!)
relief of ear pain
ease of breathing/possible elimination of apnea
prayers/blessings
Medicaid
less spontaneous trips to pediatrician (we hope)
chocolate (for mommy and later Nicole, too)
snuggle time (whole family)
P.S. Vanessa thankfully is doing well through all of this...yet we are beginning to wonder if she should do a sleep study just to be safe (are we gluttons for punishment or what?!).
Sunday, August 10, 2008
Wires and stickers
Well, last night was Nicole's sleep study. We arrived at the clinic a little before 9pm and the tech introduced himself and got Nicole hooked up to all her "fun" little wires. She even got to play with some (that weren't attached to her, of course). I was impressed with the organization and strategy of wire placement the tech had to keep "little hands" from creating complications. Nicole got to sport this fancy "headband" to keep her from noticing all the leads on her head (although that band was the only thing she really did try to pull off).
Nicole did awesome with the set-up and even seemed like she had a little bit of fun. She even tried to stick on the surplus stickers and wires the tech gave her to play with.
After the tech placed about 22 wires (with two more under her nose yet to come), he wheeled in her "test crib." Nicole thought the bed (or play area as she perceived it) was pretty cool, and she even decided to pose for me showing off all the nifty wires and bands:
"Mommy, don't forget the cool toe piece!"
As if the wires and such weren't enough, I still needed to put her brace on for the night. She humored me, but gave me this look like, "how much more are we going to have to do here?"
Still she had her bear and "bee-bee" (binky) to help her feel (more) comfortable.
The hardest part of the night was getting her to sleep. After getting her all situated, I could see in her expression that she was starting to put 2 and 2 together and that she was somehow supposed to sleep with all this stuff on. We read a few books, but then she just started crying. I would have gladly just snuggled her to sleep, but with all those wires, her brace, and the box the wires were connected to, it wasn't going to happen. So, I held her as comfortably as I could and just rocked her while the tech came in and out a couple of times. She finally passed out enough to where I could lay her down. Thankfully, she more or less slept the rest of the night.
The weirdest part of the night was knowing I was sleeping in a room monitored by video, with a tech that would come in at any moment several times during the night to add/adjust wires. I also slept in a bed with a plastic mattress cover (for younger kids who come take the test) that crinkled with every motion, and a pillow that wasn't uncomfortable, but felt very odd. It wasn't bad, but with all that, and worrying about how well Nicole would do, I felt a little restless. I am just glad she was too tired to care!
We were woken up at 6:30 so the tech could remove wires and wrap things up so we could go. I was tempted to ask if we could just unhook her and let us sleep longer, but they don't really do that (probably so the techs can also go home and get sleep). Nicole looked a little less than thrilled to see the tech at first, but quickly cheered up and started jabbering as she realized she was being set free. After that we just had to get up and out the door. Since Nicole still had a lot of stickers on her, I had to wait for home and a tubby to take them off, but I took a picture of them before we left (she looks mad in this shot because I set her down and wasn't showing her the picture I was taking right that moment!):
This is how we both felt on the ride home:
Now we're home and happy to be here! We're so relieved to know the test went successfully! Now we just wait for the results...
Nicole did awesome with the set-up and even seemed like she had a little bit of fun. She even tried to stick on the surplus stickers and wires the tech gave her to play with.
After the tech placed about 22 wires (with two more under her nose yet to come), he wheeled in her "test crib." Nicole thought the bed (or play area as she perceived it) was pretty cool, and she even decided to pose for me showing off all the nifty wires and bands:
"Mommy, don't forget the cool toe piece!"
As if the wires and such weren't enough, I still needed to put her brace on for the night. She humored me, but gave me this look like, "how much more are we going to have to do here?"
Still she had her bear and "bee-bee" (binky) to help her feel (more) comfortable.
The hardest part of the night was getting her to sleep. After getting her all situated, I could see in her expression that she was starting to put 2 and 2 together and that she was somehow supposed to sleep with all this stuff on. We read a few books, but then she just started crying. I would have gladly just snuggled her to sleep, but with all those wires, her brace, and the box the wires were connected to, it wasn't going to happen. So, I held her as comfortably as I could and just rocked her while the tech came in and out a couple of times. She finally passed out enough to where I could lay her down. Thankfully, she more or less slept the rest of the night.
The weirdest part of the night was knowing I was sleeping in a room monitored by video, with a tech that would come in at any moment several times during the night to add/adjust wires. I also slept in a bed with a plastic mattress cover (for younger kids who come take the test) that crinkled with every motion, and a pillow that wasn't uncomfortable, but felt very odd. It wasn't bad, but with all that, and worrying about how well Nicole would do, I felt a little restless. I am just glad she was too tired to care!
We were woken up at 6:30 so the tech could remove wires and wrap things up so we could go. I was tempted to ask if we could just unhook her and let us sleep longer, but they don't really do that (probably so the techs can also go home and get sleep). Nicole looked a little less than thrilled to see the tech at first, but quickly cheered up and started jabbering as she realized she was being set free. After that we just had to get up and out the door. Since Nicole still had a lot of stickers on her, I had to wait for home and a tubby to take them off, but I took a picture of them before we left (she looks mad in this shot because I set her down and wasn't showing her the picture I was taking right that moment!):
This is how we both felt on the ride home:
Now we're home and happy to be here! We're so relieved to know the test went successfully! Now we just wait for the results...
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