Tuesday, April 29, 2008

Tuesday, April 29th, 2008

Marianne was happy to report that I had a great night last night on my soy formula. When Mommy came out to see me this morning I was grinning from ear to ear. We got a little time together before Sarah showed up for her shift. Mommy checked on me several times during the day. It seemed like every time she did, I was crying. Sarah kept telling Mommy it was probably gas - but Mommy thinks it's probably just that Sarah doesn't know me quite as well as Lucille and my schedule is all off. Good thing my "Taggie" showed up mid-day to help comfort me. Mommy noticed early on that I always went for the tags on toys and stuffed animals. She knew there was a blanket out there covered with tags for this very reason. The internet is a wonderful thing and she was able to find the company that makes them and ordered me one. It arrived by UPS today and Mommy made sure to give it to me right away. I gave it a test run for my nap and you can see I took to it without a problem. Goodbye teddy bear lovie - hello taggie!

And by the way..... knock on wood, it's been a full 24 hours on soy formula and no tummy troubles : )

Peyton Nicole Smith

Monday, April 28th, 2008

It was quite a whirlwind morning. My parents were up bright and early because I had a morning appointment with my GI, Dr Davies. My respite nurse, Sarah, is filling in for Lucille the first part of the week. She is notorious for being late, so Mommy had Daddy get up as a backup in case Sarah was late and it was time to go. Sarah managed to make it on time so we said goodbye to Daddy and got in the car and headed to Sacramento. The office got us right in and first was a weight check. Naked as a jaybird I came in at 14 lbs 12 ozs - down 1 oz from the appointment on Friday. Not too bad. Unfortunately, while on the scale I needed to pee so diaper or not I let loose. Mommy thought it was pretty funny, Sarah commented that at least it saved us a diaper! When Dr Davies came in, Mommy explained my symptoms. Dr Davies felt pretty confidant that I probably started out having some type of viral tummy infection and then developed secondary lactose intolerance. I guess this is pretty common in babies. Most babies can get over it in just a few days, but others it can take weeks or months. Usually, it is only temporary and babies can go back to lactose formulas after their tummies have healed a little. Dr Davies wants me to try one more formula - this time a soy based one - to see if that will cure me. She is also going to move me down from 24 kcal to 20 kcal. I haven't been on a regular calorie diet since - well never! After getting some samples of the formula from Dr Davies it was back in the car and a much needed nap.

Since Mommy had already mixed up my formula for the day, she isn't going to start me out on the soy until my night feeding. So today I played off and on with Sarah and took a few naps. At 3 pm I had my PT appointment with Michael. For not getting my last nap in, I was in a surprisingly good mood and spent more time flirting with him than working on physical therapy.

When Daddy got home, Mommy ran to get something for dinner and before long it was time for my bath and off to bed. Soy formula here I come!

Peyton Nicole Smith

Sunday, April 27, 2008

Sunday, April 27th, 2008

Don't you like the picture of Henry with the monkey? It is a toy my Mommy bought him a few weeks ago. Daddy tied it on his collar to see what he would do. He just put his head down and was going to go to sleep - guess he doesn't mind a "monkey on his back".
Some days I can be a lot of fun, today was one of those days. Mommy heard my feeding pump going off at 5:30. I guess Daddy was so tired from last night that despite sleeping right next to it, he just didn't wake up. As soon as Mommy shook him awake he immeadiatley hit the off button for the alarm on the pulse ox machine without missing a beat - too bad that was the wrong machine : )
Mommy sent him off to bed but got a quick report that I had had a good night for him. About 1/2 hour later I was up for the morning. Mommy and I played together for a few hours until Daddy woke up mid-morning. I am getting very adventurous with what goes in my mouth these days. Today I discovered my feet and how fun they are to chew on. I have also been experimenting with my pacifiers - and am just now learning to put it all the way in my mouth like it is supposed to be. Now I just need to get the sucking part down. OK, so I am a little slower on this stuff than the average baby - but give me a break!
Another day of no vomiting. Mommy hates to get too excited but it's the longest period so far without vomiting in 2 1/2 weeks. She's pretty sure the 1/2 and 1/2 is the reason so she will be curious to see what the GI has to say at the appointment tomorrow. Wish us luck! Mommy is convinced the doctor thinks she is crazy Mommy (okay, maybe to some extent she is) but only because she loves me so much and wants me not to be sick anymore.
Despite grumpy periods off and on this weekend, all and all it was a good one.
Peyton Nicole Smith

Saturday, April 26th, 2008

Although Mommy may not have slept really well, I had a good night last night. I pretty much slept the whole way through. Daddy came out about 5:30 to relieve Mommy so she could go get some sleep. After a few hours she came to take care of me while Daddy worked on the yard for a few hours. Although I wasn't vomiting, I was grumpy off and on. Daddy had to rock me to sleep at one point - and yes, Mommy sleeps with her mouth open just like I do! Mommy wonders if on the 1/2 and 1/2 I am just hungry.
Late in the day as the grumpiness wore on, my parents decided a walk was in order for the whole family. My brothers were so excited! It was awfully hot, though, in the low 90's. Poor Chili was breathing hard towards the end - we thought Daddy may have to carry him or put him in the stroller with me! They stopped by the park so they could get a picture of me out in the sun as proof to my Aunt Kristin that they do leave the house sometimes : )
Peyton Nicole Smith

Saturday, April 26, 2008

Friday, April 25th, 2008

When Mommy woke up this morning she heard the suction machine going so she came to check on me. Unfortunately, I had started vomiting again. Mommy held me for a few minutes until I calmed down, then put me in my exersaucer and left me with Marianne while she went to take a shower. When she came back, I had fallen asleep in my exersaucer - you can see the pictures above. I drool just like my Mommy!
Mommy called the GI's office first thing at 8 since it had been two days and she still hadn't received a call back from the doctor. They told Mommy that Dr Davies was off on Fridays and they couldn't get me in Monday for an appointment because she was double and tripled book. They said they would have a nurse call at some point today to talk with Mommy. With a long weekend ahead, Mommy scheduled an appointment with my pediatrician, Dr Scott for late in the afternoon.
Mommy moved me back to 1/2 Neocate, 1/2 Pedialite during the day while waiting for the appointment and I had no other issues with vomiting. I was very excited to get in my car seat and go somewhere. When we arrived at the doctor's office, no less than five staff members came up to say hello. They all remembered my name and were amazed at how big I was getting. Without clothes, I weighed in at 14 lbs. 13 ozs., just like on Wednesday when I was there for my Synagis shot. Dr Scott came in to see me. She has a little girl just a few days older than me and just loves all my hair - her daughter is bald as a cue ball. She checked my tummy and got the background from Mommy. She also doesn't think this is a flu bug - but something related to formula intolerance. Mommy explained my pattern - I am just fine when it is straight Pedialite or when it is 1/2 Pedialite, 1/2 Neocate. Within about 12 hours of starting the full strength Neocate, though, the vomiting returns. Dr Scott had her nurse call Dr Davies office to see about getting me in. They said the nurse from Dr Davies office had called Mommy this morning, but Mommy looked at her cell phone and there was no record of any call. Regardless, the nurse said she would contact Dr Davies and give my Mommy a call back today!
Sure enough, a few hours later the nurse called back. She said she could get us an appointment for 7:45 am Monday. Mommy had to scramble to figure that one out since the nursing shift doesn't start until 8:30 and with traffic it will be a good hour drive to get to the doctor. To further complicate matters, Lucille will not be around for the next four shifts (Saturday night, Monday-Wednesday days) since her mother passed away and she is going to Texas to go to the funeral. My respite nurse, Sarah is going to cover the shifts during the week and agreed to come in extra early on Monday so Mommy could take me to the appointment. The nurse also recommended leaving me on 1/2 & 1/2 all weekend to see if we can prevent any more vomiting.
Since we don't have Lucille on Saturday, Mommy is going to take the shift tonight and Daddy will take the night shift tomorrow. They are such a good team! Here's hoping for a quiet weekend!
Peyton Nicole Smith

Friday, April 25, 2008

Thursday, April 24th, 2008

Mommy never did get a call back from my GI yesterday. So this morning while she waited to hear from her, she started me back on full strength Neocate. By mid-afternoon since there wasn't any calls, Mommy tried the office again. She sat on hold for 20 minutes but had to end the call when something with work came up. About 15 minutes to 5 pm, I spit up just a little - the same MO but just not as much. Mommy tried to call the office a few minutes later but they had already closed for the day. She is hoping Dr Davies may give her a call tonight.

After my episodes it takes about an hour and then I am back to my usual self. You can see me playing in my walker above. Although I like my exersaucer, since I have already figured out the walker I get a little frustrated that it doesn't go anywhere. I have learned that if the exersaucer is on the wood floors and I jump around a lot I can get it to move a little - but not nearly as much as my walker!

Peyton Nicole Smith

Thursday, April 24, 2008

Wednesday, April 23rd, 2008

Mommy says it is either feast or famine with me. After over 48 hours of not throwing up, it started up again today. I had been on my feeding for 4 hours and around 11:30 I started throwing up. I did it about 4 times over the course of 20 minutes or so. I had been pretty grumpy right before I got sick and was grumpy for a good hour afterwards. Mommy had Lucille give me a 2 hour break with no feeding and then introduce Pedialite again. After a few hours it was time for my synagis shot at the pediatrician's office. Since this was already cancelled once due to my ER visit, there wasn't much choice - sick or not I had to go get it. I was a pretty happy girl in the waiting room. There were lots of kids to watch and I am always fascinated by them. I cried during the shot but was smiling by the time we got back to the car. Without clothes I weighed in at 14 lbs. 13 ozs. So over the last 2 1/2 weeks I have gain 4 ozs. That's not a lot so Mommy is a little worried. She had called the GI's office and the nurse said she would pass on a message to the doctor but as of last night there was still no return call.

Since Mommy didn't have any direction on what to do about feedings, she went with what she was told the previous times and put me on 1/2 Pedialite and 1/2 Neocate for my night feedings. As I settled down to sleep, you can see neither the vomiting or the shot seemed to get my spirits down too much.

Peyton Nicole Smith

Wednesday, April 23, 2008

Tuesday, April 22nd, 2008

Yeah, I had a really good night! 24 hours without any vomiting! I was very sad to say goodbye to my Aunt Kristin because she has to go back to Salt Lake today. After a nice long nap this morning, I was crazy happy this afternoon. I was smiling, laughing and jumping around when I was being held. Mommy thinks I must be feeling better all around. Not sure if there is any correlation but since I have stopped vomiting I have started burping. Mommy keeps telling me it is not very ladylike but she would much rather that than vomiting!

Terry, my special education teacher, came by for a visit. We got to play with some new toys which is always fun. She is always very impressed with me and says she kind of has a crush on me. After an afternoon of playing and no naps I was ready to go to bed tonight.

Peyton Nicole Smith

Tuesday, April 22, 2008

Monday, April 21st, 2008

I wish I could report that I did have a good night last night, but unfortunately, it wasn't to be. I started projectile vomiting with Marianne around 1 am. She came and woke Mommy up about 1:30 and I continued vomiting for the next half hour or so. Mommy had decided after a week and a half of periodic problems it was time to go to the ER so we could rule out an obstruction. So Mommy, Daddy, Aunt Kristin and I headed to the UC Davis ER.

They asked my parents a few questions and led me back to the pediatric ER rooms. They said vomiting seemed to be the complaint of the night and there were several other kids there for the same reason. The resident came and asked my parents more detailed questions while I smiled and laughed at her. Mommy told me that they certainly weren't going to believe that I was sick if I kept doing that. Aunt Kristin said they were going to think Mommy had Munchausen by Proxy syndrome! The resident left to go read over my volumes of medical history at UC Davis. Some time later she returned and told my parents that they would be ordering some xrays to check the placement of the Mic-KEY button. You can see a picture of me and Mommy above in the room. Over the course of the next six hours, my parents took me in for three different sets of xrays of my belly. Just about the time I would start to sleep, it would be time for another xray. The last two, they put some stuff in my button called contrast to see where it would go. In between xrays they also hooked me up to Pedialite on a feeding pump so I would stay hydrated. Good thing my Mommy had packed extra clothes and lots of diapers because I had several explosive diapers and needed all the diapers and changes of clothes I could get. As it got later in the morning, Mommy called Lucille and had her get dropped off at the hospital since my parents weren't going to be home. I was very surprised and happy to see her.

The technician who performed the last set of xrays on me said she had a little boy named Peyton, too. He was three years old. She said she liked the name because it could be used for either a boy or a girl. My parents are a little surprised at how many Peyton's there are running around (more than they had thought!)

When the shift changed at 7 and we got a whole new set of nurses and residents, our morning nurse brought in a toy for me to play with to keep me entertained and some breakfast for my parents. Mommy and Aunt Kristin ran to get some coffee and passed Dr Sykes in the hallway. Mommy could tell he was trying to figure out how he knew her but he didn't say anything. The pediatric surgeon resident who saw me in clinic when my button was changed about a month ago stopped by to check on me, too. After review of the xrays it seems that my button is just where it needs to be and no obstructions were visable. Although my parents were relieved nothing was "wrong", Mommy is still upset that there is no explanation for all of the problems I have been having. The ER docs released me with instructions to follow up with my GI doctor. We all got loaded into the car and before we even left the parking lot, I started gagging in my car seat. Since nothing came up, my parents went ahead and headed home.

I tried to go to sleep but was kind of fussy. My Mommy waited for the GI folks to call her back about what to do but after a few hours she told Lucille to go ahead and put me on Pedialite while we were waiting. Eventually, the dietician at the GI office called back. She didn't really have any information for my Mommy but thought I should stay on the Neocate for now. In the afternoon, Mommy had Lucille change me to a mixture of 1/2 Pedialite and 1/2 Neocate. I held that down as well, so Mommy is going to keep me on it for my night feeding as well. Poor Daddy had gone on to work, so when he came home Mommy had him get something to eat and go right to bed. Aunt Kristin and Mommy stayed up with me until I fell asleep which didn't take too long, I was very tired. Everyone cross fingers for me that I will have a good night tonight!

Peyton Nicole Smith

Monday, April 21, 2008

Sunday, April 20th, 2008

I had a good night last night for Lucille. A few minutes after she left this morning though, I started gagging but never actually threw up. Mommy is just not sure what is going on with me anymore. She is going to give the Neocate a few more days and hopefully my tummy will get better. I had some alone time with Daddy this morning while Aunt Kristin and Mommy went shopping for me. When they got back they had brought me a Tea Party exersaucer. You can see me playing in it above. After my walker, it was a little overwhelming but it is so cute and girly that Aunt Kristin knows I will love it! My Aunt Kristin also bought me my first teeny, weeny bikini. Isn't it cute! I get to show off my trach and my button when I am wearing it. I may not be able to go swimming in a trach, but every girl deserves a cute bathing suit!
While Mommy was taking a nap in the afternoon I had another tummy issue with my Daddy. Despite that, I was a happy girl the rest of the day and was very good during my trach change. While I was sleeping my parents watched a Hallmark movie about a Mommy and Daddy who were fighting over whether to have their child get a cochlear implant. The Mommy was deaf and the Daddy was hearing and they couldn't decide what was best for their little boy. Mommy thought it was awfully interesting to get to see so much sign language being used - she can't imagine being that fluent in ASL. She did recognize a few of the signs in the movie though! Here's hoping for a good night!

Peyton Nicole Smith

Saturday, April 19th, 2008

I was such a good girl for Daddy last night - no problems at all. I was very excited because today my Aunt Kristin is coming for a visit. Mommy sent Daddy to bed and tried to get a few things done around the house while I was napping. I woke up from my mid morning nap just in time for Sarah, my parents respite nurse, to come play with me. Daddy went into work for a little while and then went to a late lunch with his friend Jeff. Mommy went grocery shopping and then came home to drop off the groceries and check on me before going to the airport to get Aunt Kristin. When she checked in with Sarah, Mommy found out I had some more tummy troubles. It wasn't really bad and I was feeling better by that point. A few hours later, Mommy came home with Aunt Kristin! She was very happy to see me and I had gotten very big in the few weeks since I saw her last. You can see that Henry missed Aunt Kristin, too! I showed her my new teeth and gave her lots of smiles. Before I knew it, it was time for bed.

Peyton Nicole Smith

Friday, April 18th, 2008

Mommy had hoped for a better day today, but at around 6 am, Marianne woke her and Daddy up. I had been vomiting off an on for an hour. Since I was done with my feeding, Mommy got me changed and put a call into my GI when the office opened. Since I had just started on my new formula last night, the dietician said it was too early to develop an intolerance. Mommy is worried that I might have another obstruction so she and Lucille changed out my Mic-KEY button this afternoon. The rest of the day I did really well, going from 100% Pedialite to 1/2 Pedialite and 1/2 Neocate and then 100% Neocate. In the midst of all of this tummy trouble, Mommy noticed I have a second tooth coming in right next to my other tooth. She was really surprised! Since I hadn't been feeling well, Mommy cancelled my OT appointment and will reschedule for when I am better. Today is my Daddy's night with me, so Mommy is hoping I am easy on him.
Peyton Nicole Smith

Friday, April 18, 2008

Thursday, April 17th, 2008

My GI's dietician finally got back to Mommy today after talking to my doctor. They have decided to try me on a different formula. This time it is Neocate and it is an extra special formula for babies like me. It is by prescription only and can't be picked up at the store so Mommy had to go back to the doctor's office to get some samples. The formula is elemental and for babies who have any type of allergies or acid reflux. Within a few days it is supposed to make me feel better. Mommy is going to start me on it tonight for the first time.
Daddy had a sales meeting so he didn't get home until about 9:30 so that meant it was just me and Mommy time tonight. Mommy played with me and the dogs until it was bath time. Once I was in my crib I tossed and turned for about an hour but eventually fell asleep. When Daddy got home he gave Mommy a nice long foot massage on the couch while they waited for Marianne.

Peyton Nicole Smith

Wednesday, April 16, 2008

Wednesday, April 16th, 2008

I should have known! We all got excited too soon. After 48 hours being spit free, around 2 am I had another episode. This was Marianne's first time having this happen with me so she woke my parents up. Mommy came out and was holding me when she started to feel a little dizzy so she sat down. She started to feel even worse and thought she might pass out so she asked Marianne to hold me and she would go get Daddy. Mommy sent Daddy on to talk to Marianne about the protocol when I am sick while she got on the bathroom floor to try to shake it off. Within a few minutes she felt better and eventually came back out to spend some time with me before I fell asleep. Mommy had a similar event when she was pregnant with me one night. Not sure what caused it but Daddy thinks it might be the stress of me getting sick again.

I stayed awake for Marianne for four hours in total, finally falling asleep around 4 am, but I was up bright and early at 7 am just in time to say goodbye to Daddy and Marianne before they left. All things considered I was in a pretty good mood this morning and all day with Lucille. I had several good naps and just seemed like I felt better.

Mommy put a call in to the GI to talk about what is going on with me. Meanwhile, they are putting my crib back on an incline in case that has anything to do with it. Mommy got a call today from my audiologist about my second BAHA. Apparently, infants with bilateral hearing loss is pretty uncommon, so although I can get my BAHA pretty quickly, my headband will have to be custom made and will take about three months. My parents are going to try to rig something with the headband I have now to accomodate the second one, so wish them luck. I always thought I was pretty special but I just keep showing everyone just how much!

This evening I was in a great mood and played with my brothers on the floor. I love trying to sneak their toys away from them when they aren't looking.

A shout out to all my "family" at the University Health Plans. You can see me wearing my U Baby Care bib in the picture above. I wear a bib to bed each night to keep my jammies from getting wet from my trach mist and these bibs work extra well because they snap in the back - that way they don't fall off like the velcro ones when I move and I can't pull them off either.

Peyton Nicole Smith

Tuesday, April 15th, 2008

Another day passed without spitting up. Hooray! I am still being really need and irritable. My parents aren't sure if it is my new tooth or if I am just going through a phase but I want to be held and walk around with my parents. Daddy decided to pull out the dusty Eurorider we have never had the opportunity to use and try it out. I did okay with frequent stops by the mirror to check myself out. Bedtime got moved earlier again because I wasn't very happy and I was seriously crying myself to sleep tonight. After about 15 anxious minutes for Mommy I finally found a good spot and fell asleep. When Marianne showed up at 11 pm I had been asleep for almost three hours.

Peyton Nicole Smith

Tuesday, April 15, 2008

Monday, April 14th, 2008

Can anyone say Yee-haw!! I made it 24 hours without any spitting up/vomiting! Yeah, my Mommy is so happy. Now let's see if we can keep this going. Hopefully, switching back to my old formula is all I needed. Please cross your fingers (and toes) for me.

Michael, my physical therapist, paid me a visit today. I was waking up just as he came for the visit so I was in an awfully good mood for him. In fact, I was more fascinated with him in his red shirt then I was with the toys he brought. He still tried to make me get on my tummy but now that I can roll 360 degrees I don't usually stay for very long. He also wants me to work on grabbing things when they are on the side of me and not right out in front. Mommy gets a laundry list from each therapist, teacher, etc after they come to visit on things we should be working on together. It's a little overwhelming at times - there are only so many minutes in the day to try to get everything in but she is trying. Once again, Michael was very impressed with my sitting up skills. He sees a big improvement from the last time he was here.

I had another rough night. It was Daddy's night to wait up until the nurse got here and I kept him jumping. He tried three times to rock me to sleep but once I was put in my crib I would wake back up. Finally, at 9:30 he just rocked me and let me play. His nose and mouth are very interesting to me and he had a hard time ignoring me because I was so cute. So he gave in and started playing with me instead. About 10:30 I was finally down for the night. Mommy is hoping these last few nights are just a phase, maybe having something to do with my new tooth. She liked having me fall asleep at 8 pm so that my parents got a few hours of (relative) relaxation before the nurse arrived. I just like keeping them on their toes!

Peyton Nicole Smith

Monday, April 14, 2008

Sunday, April 13th, 2008

I had a really good night for Lucille last night. I was only aware for about 30 minutes around 1 am - and no throwing up! While Mommy was getting ready this morning, Daddy brought me in to show her something exciting - I have my first tooth! If you look at the close up photo of me above with my mouth open - my tooth is on the bottom. Since my lower jaw is so far back it is hard to see but if you zoom in you can see it. Mommy doesn't think throwing up has anything to do with my tooth - although she read that when babies are teething it lowers their immune system so they may be more susceptible to other things. I was kind of fussy during the day and because of the tooth my parents gave me some Tylenol to help. Mommy was thinking we had dodged another bullet but a little after 4 pm I spit up again while Daddy was playing with me. I was fussy for quite a while after that and wanted to be held. To entertain me, my parents tried out the wheels on my walker again - and today I figured it out! I was rolling all over the place (backwards). I thought it was great and it kept me and my parents happy for hours until it was time for my trach change and bath. Tonight I got to wear my new pink flamingo jammies that Mommy found at Old Navy. Just to be safe, Mommy started me back on the Similac tonight in hopes that going back to the tried and true formula may make me feel better. Although I was tired, I tossed and turned for 3 hours until Marianne showed up. Mommy would rock me to sleep and put me in my crib. I would sleep for 10 minutes or so and then wake back up. Five times and three hours later I was down for the count. Here's hoping for another good night.

Peyton Nicole Smith

Saturday, April 12, 2008

Saturday, April 12th, 2008

It's been a rough 24 hours for my parents and I. My mommy was my night nurse. Because I tossed and turned most of the night she didn't really get to sleep. I woke up around 3 am and started playing in my crib. All of a sudden at 3:30 I started vomiting off and on for about a half hour. Mommy decided to turn off my feeding. She called the pediatrician nurse advice line for some help, but since I have a GI monitoring my feedings they told her they couldn't help - she would need to call the GI. So Mommy called the GI's after hours line and a few minutes later the GI called her back. Dr Davies didn't sound very happy for the early page but Mommy apologized and explained the situation. She told Mommy to move me down to 24 calories for all of my feedings and if I continued having issues or got worse to go to the ER. Mommy rocked me to sleep for about a half hour but I was very restless. At 6:30, Daddy came to relieve Mommy so she could get some sleep. He started my feeding at 8 am as usual and I slept and played most of the morning. I was off my feeding from 12 to 2, and then Mommy started my 2 pm feeding. About 2:30 Daddy went to take a nap so Mommy and I played. At 3:30 I started vomiting and then again around 5:15. At this point Mommy wasn't sure what to think. My day feedings had already been switched back to 24 calories so why the continued problems? My parents are going to give me a few days of all of my feedings at 24 calories to see what happens. If things aren't getting better they are probably going to put me back on the other formula. Despite all the throwing up - in between episodes I was generally pretty happy and wanting to play. Tonight is Lucille's night so Mommy is hoping real hard that I sleep all night and my vomiting episodes are a thing of the past.

Peyton Nicole Smith