Another good night last night and I was up at my normal 6 am. I am trying hard to play like I used to but the cast gets in the way a lot and I am pretty top heavy so I tip over more a lot. Daddy had Mommy look for a sling at the store but they didn't have any, so Daddy fashioned an ace bandage like a sling and that made it a lot easier to play and sleep today.
In the morning, Daddy kept an eye on me while Mommy, Aunt Kristin and Jackson went for pedicures. They didn't actually work on Jackson's toes, but he enjoyed the girl talk! By the time the pedicure was over, it was time for Aunt Kristin and Jackson to head home to Salt Lake. They both gave me kisses goodbye and then Mommy took them to the airport.
In the afternoon, I got another present in the mail. The news station with the 1st Birthday Club sent me a thank you note and a cute t-shirt that says, "I was a star on Good Day Sacramento". That is definately one for my baby book!
In the evening, my parents took me on a walk in the stroller. It was pretty hot but there was a nice breeze. Later, I figured out the doggy door. I scooted over to the sliding glass door and watched Chili go out the doggy door. After sticking my hand through it a few times, I grabbed Chili's toy and pushed it out the door. My parents know it is only a matter of time before I decide to go out the door too, so they are going to have to keep a close eye on me (and all their belongings)!
Mommy was hoping I would get back into my routine today but I was bound and determined to set my own schedule. The morning started off well. I slept all night and woke up a little before 6 am. But I only made it about 45 minutes before I was really tired and wanted to go back to sleep. Over the next 9 hours I slept for Lucille all but about an hour and a half. I tossed and turned a lot but I would only awaken for a few minutes and then go back to sleep. Mommy was a little worried so Lucille hooked me up to the monitors. Over the course of the day - I went from a sleeping heartrate of 160's to 130's to 120's to the low 100's - back to normal for me. Lucille kept taking my temp but I was not running a fever. Mommy would have expected all this sleeping yesterday but maybe all the excitement yesterday contributed to the sleeping today.
I woke up in time in the afternoon for some frozen fruit (with my cast covered with glad seal and stick) and play time with some of my new toys. Then Daddy came home from work and I was getting tired again. After two blow out diapers in about 5 minutes (one was mine, one was Jackson's) it was time for bed again. It took me awhile to fall asleep but hopefully it will be a good night again.
Everyone woke up bright and early this morning in anticipation of my discharge home from the hospital. First, Jackson had to get his bath and Mommy helped Aunt Kristin keep him entertained. Then, it was off to the hospital.
The nurses said I did just fine last night but as soon as I woke up and saw my parents I started crying and was very agitated. Mommy put me on her lap and rocked me. After a dose of Tylenol with codeine and Prilosec I took a nap. When I woke up a little later I was a whole new girl - smiling at my parents and acting much more like myself. While we waited for Dr James to come by to sign my discharge papers, they took an xray of my chest to check out my trach size. Then, my Daddy opened my presents from the hospital. One was an Eyore who sings the other was a Little People farm. I wasn't too interested in them just yet, but Mommy is sure I will play with them soon.
Dr James stopped by to check on me and said I was doing great. They didn't get the right xray so on my way out the door she wants my parents to bring me by the xray techs so they can get one more from the side. Then, they will give my parents a copy to send on to my ENT at Stanford. My parents had to wait a minute for my paperwork so they got me changed back into my street clothes and unhooked all my wires and I was ready to roll. A few signatures and a prescription and we were on the way down to xray - quite the caravan with my parents, me, my stroller, Grandma & Grandpa Mower, Jackson, Aunt Kristin and Jackson's stroller. The xray was quick and then the caravan headed to the cars. Mommy sat in the back of the car with Jackson and I in our car seats. Jackson fell asleep on the ride home, but I was starting to get fussy. I was happy to be in my crib, though, and rolled around for a few minutes before falling asleep.
Grandma and Grandpa Mower showed up soon after as well as the pizzas Aunt Kristin ordered. They had some lunch while I slept and then the agency needed to stop by to change my plan of care. When I woke up I was still a little groggy but it was time for presents and cake. I got so many fun toys and pretty dresses. One of my favorites, though, had to be Elmo. (My parents are loving it - thanks Uncle Jeff!) I wasn't sure what to make of a little red furry animal throwing itself on the floor and laughing. I think everyone else thought it was funnier then I did but Elmo is growing on me. Eventually, I scooted over to him and just knocked him down. Mommy can't wait to see Henry and Chili's reaction when they come home tomorrow from boarding!
After all the presents were opened it was time for my birthday cake. While the adults had the cupcakes, I got my own special Sleeping Beauty cake all to myself. Mommy lit the candle, everyone sang happy birthday and then Mommy blew the candle out for me. Then, the cake was all mine! Initially, I just put my fingers in the frosting but when Mommy gave me a taste I figured out what to do with it and it didn't take long before I had frosting all over me. The cast sure didn't stop me! The fun came to an end shortly when my parents started seeing pink frosting in my trach. I got all cleaned up and got to play with my toys for the rest of the afternoon.
I was such a special birthday girl that I got on the local news yesterday! You can see the clip above.
It took a while tonight to fall asleep since it is hard to move that cast around but my parents are just glad to have me home and doing so well. Thanks everyone for the presents and well wishes. If this is what birthdays are like then maybe I will have another one next year after all!
Happy Birthday to me! OK, well it was my first birthday but I don't know if I would say it was a very happy one. Since this was my first birthday I wasn't really sure what to expect but I am really hoping all my birthday's don't go this way.
I had a really good night, slept from 10 pm to 5 am without waking up. Mommy had to turn off my feeding at 3 am since I am going into surgery early this morning. Unfortunately, the same can't be said for Mommy sleeping last night. The little girl right next to me cried off and on all night for her mommy. The strange thing was, her mommy was laying right next to her but slept through it all. My Mommy, though, wasn't so lucky. When I woke up at 5 I was all smiles and to allow my roommates some more rest time, Mommy took me down to the second floor activity area to let me play for about an hour. At 6 we returned to the room and I was starting to get fussy. Mommy knew they were coming for me at 6:45 so she tried to keep me awake and quiet but it was getting to be a challenge. Daddy at 6:45, just in time to walk with Mommy and I and the nurse to the pre-surgery waiting area. For the next 45 minutes I cried off and on because I wanted to go lay down for a nap but I had to stay awake. When the nurses found out it was my birthday, they sang me happy birthday. It was very nice, but both Mommy and I were crying through the song. We found out that one of the anesthesiologists gave birth to her daughter a year ago today as well -that has to be good luck!
Soon enough, the anesthesiologist scooped me up and took me away. My parents gave me a last kiss and with tears in their eyes left me with a very capable surgeon, Dr Michelle James. They had been told I would be in surgery about 4 hours start to finish so they headed to the cafeteria for some coffee and something to eat. Then they spent the next few hours wandering the hospital trying to keep themselves from worrying too much. About 11:30, Dr James came out to tell them I was doing fine and surgery went well. Shortly after that, Grandma and Grandpa Mower and Kristin and Jackson came to the hospital. While I was in recovery, only Mommy and Daddy were able to visit and only one at a time. I was there about an hour and then they moved me on to the ICU. In the ICU two people can visit at a time but Jackson was not allowed. Everyone got a chance to visit with me for a short while. I was pretty agitated and not very happy but Mommy was able to rock me to sleep. By then it was long past lunch time so they left me sleeping while they grabbed something to eat and Mommy got a short nap at home.
When they arrived back at the hospital a few hours later, my mood was not much improved. The nurses greeted my parents with the news that I had not yet peed and they could tell by an ultrasound of my bladder that I needed to. They got the catheter ready and seconds before inserting I started peeing all over the bed. Everyone was very happy - espescially me! Just in the nick of time : )
After a lot of peeing and some rocking by Mommy I was down for another short nap while everyone had to leave for the shift change. They spoke with the ENT who indicated that I am scheduled for some xrays in the morning to see if my trach (NEO) is getting too short for me. If they think so they will consult with my ENT at Stanford to see about the next longer size (PED). After a shot of morphine, a dose of Prilosec and hooking me up to my trach mist - my parents left for the night just as I was getting ready to start up a feeding for the first time since surgery. Since neither of my parents have slept well for a few nights, hopefully we will all sleep well in prep for a discharge home tomorrow!
Thanks for all the birthday wishes and prayers for my surgery today!
The surgery fun begins! Today Mommy went to pick up Jackson and Aunt Kristin from the airport. Then it was on to Raley's to pick up my cupcake cake to hopefully share with the kids at the hospital. While they were gone, I was napping with Lucille. Grandma and Grandpa Mower were driving up just as Mommy, Kristin and Jackson arrived. When they all walked in together I was a little overwhelmed. Since I was waking up from a nap, I wasn't very enthusiastic initially about the visitors. Eventually I warmed up and about that time, we had to leave for the hospital.
Grandma and Grandpa Mower stayed with Jackson while Mommy, Lucille and I got in the car for the short trip to Shriner's. Once we arrived, Lucille said goodbye to go home and Kristin and Mommy and I were on our own. We grabbed some food from the cafeteria to settle in for the long admission process. Because there have been so many more burn and spinal cord cases this year, they opened up a wing of the hospital that is usually closed to house us in until a bed opened up in the step-down unit. From check in at 1 pm it took almost 7 hours to finally get into my room for the night. Mommy and Kristin kept me entertained until Daddy got off of work. Then Mommy brought Kristin back to the house, she grabbed a bite to eat and then came back to the hospital. Before Daddy left he helped Mommy give me a bath (which I hated!!!) and then I was in my too big hospital gown and in bed. Daddy gave me kisses and said he would see me in the morning and he went home.
My room tonight is shared with another mommy and her little girl that just had back surgery. It took me two hours for me to wind down for sleeping. I just rolled around the bed smiling and laughing as the mommies chatted. Eventually, all my machines got hooked up and I fell asleep about 10 pm. Mommy pulled out the chair bed and is hoping to get some sleep as well.
It is getting very exciting around here in prep for my surgery and my birthday. We got a few packages today and Mommy dropped the boys off a day early for boarding. When she was checking them in, Chili noticed a large stone doggie sitting in the corner and went nuts barking and howling. Mommy brought him over to check it out so he could figure out it wasn't real and he calmed down. A few seconds later, he caught it with the corner of his eye and the barking started up again. Silly dog!
Mid-day Grandma and Grandpa Mower arrived from Salt Lake. Mommy met them at the hotel and they went to lunch. Good thing, I was going down for a nap and wouldn't have been any fun. When they got to the house I was just waking up from my nap and ready to play. Grandma Mower and I kicked some toys around the floor while Grandma Mower went down for a nap. When Daddy arrived home later in the day, we went to Old Spaghetti Factory for a quick dinner. Although it was nearing bed time, I was a very good girl and was checking everyone else out around me.
Grandma and Grandpa Mower went back to the hotel and Mommy and Daddy and I went home for my bath. I was asleep within about 15 minutes I was so worn out from all the excitement.
I think my brother, Chili is pretty funny. I like to take his toy from him. He is very gentle and when he does pull, he pulls very softly so he doesn't knock me over. Whenever I see his toy I take off across the room after it so I can get to it before he does. I don't play with Henry's toys much - he doesn't really like to share.
Today I learned how to clap. You can see a video of me doing it right before it was time for my trach change. Daddy was also successful and got my hand casting done so I can see what it looked like before my surgery.
One year ago today was my original due date. Mommy was so miserable and ready to pop! I decided to let her wait it out a few additional days : )
Sarah, my respite nurse, was able to work today. It has been a few months since my parents had a chance to get away alone on a weekend together. They had a nice lunch, got some shopping done at Toys R Us and Pet Smart and then got Mommy's car washed. While they were out and about, they noticed a new vet/boarding facility opened up just around the corner. They went for a tour - and they will take my brothers next week! It is not a cageless facility, but my Mommy is just happy they will take Henry and Chili on such short notice and without waiting 10 days for their bordatella shot to take effect. Everyone will be much happier (okay so maybe not the boys).
In the evening, Daddy went off to see a movie while Mommy got me to sleep. Daddy's trick of putting a blanket over the front of the crib so I don't watch TV has made a huge difference and I go to sleep without too much trouble now.
Just days before my surgery - and my birthday. Mommy is starting to go into planning mode - lists of tasks that need to be completed. One of the most important is getting a casting of my hand before my surgery so my parents can always remember what it looked like. Although it may not be functional - my thumb is really cute!
Mommy has been "discussing" my room situation with Shriner's. She doesn't feel good about leaving me in a room by myself (or with another child and their family since the rooms are shared). Although I will probably be hooked up to monitors if a nurse can't see me it makes Mommy nervous. My parents were planning on being with me as much as possible but Mommy won't even feel good about leaving to go get something to eat if that means I will be alone. If I am in the PICU (pediatric intensive care unit) they are usually an open floor where a nurse monitors several kids at a time - there usually aren't doors blocking their view. After several phone calls to express concerns, Shriner's has agreed that the night I am recovering from surgery I will be in the PICU. The night prior to surgery, though, I may be on the regular pediatrics floor unless the respiratory therapist or anesthesiologist say otherwise. Mommy is feeling okay about that plan so now she is a little less stressed.
Mommy is not sure of the internet situation at Shriner's, but as time allows she will make sure to update the blog so you all know how surgery went - and how my first birthday was celebrated.
My heart is breaking. I woke up this morning feeling a little disappointed knowing that Peyton will need to keep her trach in for 9 months to a year. Even though I knew going to the appointment yesterday the recommendation is not to decannulate until summer - I was still hoping maybe she would be different. But that disappointment was quickly replaced by crushing sadness. A woman I have come to know as "Tommy's Mommy" posted on the trach website that her son passed away last night. Over the last year I have read the struggles of this little boy and his family. He was a preemie and had lung disease and congenital heart defects which combined resulted in a his trach. In order to do the needed heart surgeries to correct the defects, the surgeons wanted his trach out as it is was risk for infection. Tommy was decannulated a few weeks ago and even made it out of the hospital - but within a few days returned due to problems managing his secretions now that he was a "mouth breather". The trach was put back in - but they were starting capping trials again (cover the trach but still leave it in). There was hope that they could get the trach back out and send him home again. But it was all too much for his little body - already compromised with heart and lung issues - and he passed away last night. I have never met this boy - I only know him through pictures and videos and the postings from his mother - but I cried as if he was my own family. This devestating news is a reminder to me of the tight rope we walk with these children. There are no guarantees. I have to remember to enjoy each day that we have with Peyton and not spend so much time worrying about the future. Tommy's Mommy will be in my thoughts and prayers.
It was a busy day! My parents woke me up at 15 to 6 this morning. They had already packed up the car and it was time to hit the road to get to an 8:30 appointment at Stanford. I was a good girl most of the way - but about 1/2 hour before we arrived I started getting fussy. After about 15 minutes I cried myself to sleep and got a short nap.
The Craniofacial Anomalies Clinic provides for comprehensive diagnostic evaluation and treatment for children with craniofacial anomalies like me. As craniofacial anomalies often result in complications on many levels having multiple specialties involved in my care ensures I get what I need. Here are the specialties that can be involved:
Audiology Genetics Neurosurgery Plastic Surgery Oral and maxillofacial surgery Otolaryngology (ENT) Speech therapy Orthodontics Dentistry Ophthalmology Psychiatry Social work
My parents were most interested in meeting with the ENT, since they will be in charge of how and when I am decannulated. The ENT was the second specialist I saw today. She was very nice and answered a lot of my parents questions. They also spoke with audiology, genetics, plasticy surgery, speech therapy, dentistry and orthodontics. Here is some of what they found out:
1. The ENT wants me to have both of my hand surgeries and my cleft palate repaired before decannulation since anesthesia is much safer while I have my trach. ENT's don't like to decannulate until summer. They will have me come back in February (hopefully surgeries will be completed by then). At that time they will evaluate what tests they will need to do to look at decannulation. The first will be a scope of my airway to make sure I don't have any other issues like granulation or scarring from intubation. 2. To encourage me to practice breathing through my nose and mouth the ENT wants my parents to increase the length of time I am wearing my speaking valve until it is during all waking hours. Then, they want me to use a valve with only one hole drilled in it and eventually a valve with no holes. This will also encourage me to vocalize more and learn how to swallow my secretions better. 3. The geneticists have ordered a more comprehensive chromosome test. One was completed while I was in the NICU but it didn't find anything. This test may not either, but it looks more closely at my chromosomes. If it does find something with my chromosomes - then my parents could have testing done to look at the chromosome on any future babies they have while in utero to see if that baby has the same problems. Since I am such a hard stick, they will plan on having the lab take my blood for testing while I am inpatient for my cleft palate repair in September. 4. The geneticists took pictures of my face, my hands and my feet. They are going to bring to their next genetic panel to share with all other geneticists that didn't get to see me today. They want to discuss my case to see if everyone is in agreement that my diagnosis is Nager's. Most of my clinical symptoms are right on target with Nager's but some are not as common (like my aortic valve disease). 5. The orthodontist and dentist looked at my teeth because my parents had concerns that they looked yellow. The orthodontist suspects that my Mommy may have had a high fever at a point in the pregnancy that the enamel was being formed and that is what is causing the discoloration. Mommy did have a really bad cold (with fever) at 12-13 weeks along - so that may be it. The orthodontist said that if that is the cause, the rest of my baby teeth shouldn't have the same problem and my adult teeth will be fine. My parents will keep an eye on it for now.
That's probably the most important things that came out of the panel appointment today. I was such a good girl for the entire time (4 hours!!!). Everyone commented on how cute and good natured I am. After making the follow up appointment for ENT in February, it was back in the car for the long ride home. Within a few minutes I was zonked - and slept pretty much the whole two hours home. After being in the car so long, when we got home I was ready to zoom around in my walker and play with toys for the rest of the evening.
It is kind of a joke in our household that after a few days without a stinky diaper all I need is some Miralax and Lucille. For whatever reason, once I get my Miralax, Lucille always seems to be the one to get the brunt of the first stinky diaper to follow. Today was no exception. Mommy can always tell that the diaper arrived because mid-way through the day I end up in a different outfit then what she started me out in. Poor Lucille!
After my diaper though I was in much better spirits and not in the mood to sleep. When Michael arrived for my PT appointment, though, I was actually very good despite not getting a good afternoon nap. Therapy is a little harder at this point because now I just scoot away if I am not in the mood to participate. I am keeping Michael on his toes!
Mommy was a little frustrated today to find out that the dogs are not going to be able to be boarded next week like she had hoped. Apparently, their Bordatella booster shot (for canine cough, yes the same canine cough booster that got delayed because Chili picked it up last time he boarded with them) must be given 10 days prior to boarding. My parents didn't realize that and had been trying to get respite care for the last two months to go on a weekend to get both dogs vaccinated. Unfortunately, they haven't been able to get the respite nurse to come in so they were going to bite the bullet and get the shots done this week. Too late now. Since 10 days will not have passed by the 25th when they wanted to drop the dogs off they aren't able to board them. So Jackson Smith you better be prepared to be licked to death by Chili and completely ignored by Henry! Don't worry - Mommy will make sure your Mommy has plenty of baby wipes to clean up all of Chili's slobber!
This morning my Mommy left to get groceries. When Daddy hadn't seen Henry or Chili for an hour or so after she left, Daddy went looking for them. Just like children, if you haven't seen or heard from them in a while it is usually a bad sign. My brother, Henry, is devoted to my Mommy and so he wanted to wait by the garage door until she got back. Because the hardwood floors are cold, the closest place he can find that doesn't have hardwood floors is a rug in the spare bathroom. Since Chili is devoted to Henry, he laid next to Henry on the rug and that is where Daddy found them - waiting for Mommy to come home.
In addition to getting groceries, Mommy also went to get me a new walker. My first walker was great, but it had already been used by other kids before I got it. I have been using it for months now and have put a lot of miles on the plastic wheels. It had gotten to the point that the wheels wouldn't turn anymore so it wasn't as much fun as it used to be. My parents decided it was time to break down and get me a new one since I am not quite walking on my own yet. Target only had one walker but it wasn't too expensive so Mommy picked it up for me. When she got home, Daddy quickly put it together and I took it for a spin. Wow!!!! What a difference wheels that turn make! I am so much faster now that the dogs have to run to get out of my way. Poor Chili got caught a few times because he didn't move fast enough!
Daddy had modified my first walker to let my backpack with my feeding pump hang - so I could be in my walker while I was on a feeding. Since walkers don't come with this as an option - Daddy had to make an "IV pole" for my new walker. He has improved on the first version with version 2.0. This one comes in the shade - Sweet Pea - one of Daddy's nicknames for me. It is also smaller so it can fit on the base a little easier. Daddy is becoming pretty handy at this - can't wait to see what version 3.0 looks like!
While he was out getting supplies for my new IV pole, Daddy also picked up a rug to put in front of my toy bins so my bum doesn't get cold sitting on the hardwood floor. Now I have a little corner all my own with my toys, my rug, my rocking chair and my books. Mommy put me in my rocking chair tonight and I started pulling out books to look at. She's pretty sure this will be a favorite spot of mine as I get older. With all the time running around in my walker today, after my trach change and bath I was asleep pretty quicky.
It was such a great day today! As usual, it started bright and early at 6 am when I woke up. Mommy got me dressed and then I spent some time playing with my toys. Mommy will set me in front of the bins and I will reach for what I want. After the ground is full of toys, Mommy comes behind me and starts putting things back in the bins so I can start the process over. I must be taking after my Mommy, because I am starting to put things back in the bins too!
I went down for a good nap mid-morning and then at 11:30 it was time to head to the park. Mommy, Daddy and I met Kelly, Kevin, Brighton and Sophia. It was my first official play date! Sophia has a g tube just like I do so my parents and her parents had lots to talk about. Although it was a hot day in Elk Grove, we set up some blankets under some big trees at the park and with a nice breeze it wasn't bad at all. Kelly was very nice and gave me some watermelon for my feeding bag. It was the first time I had ever had watermelon and it was yummy! Brighton is a cutie and he was so good the whole time. After a few hours I started to get a little fussy so it was time to leave and head back home - but I hope we get to play with them again soon!
Another good night last night and I was up at my normal 6 am. I am trying hard to play like I used to but the cast gets in the way a lot and I am pretty top heavy so I tip over more a lot. Daddy had Mommy look for a sling at the store but they didn't have any, so Daddy fashioned an ace bandage like a sling and that made it a lot easier to play and sleep today.
