Monday, December 31, 2007

Sunday, December 30th, 2007

Mirror, mirror on the wall - who is the fairest one of all? Me of course! I can't help gazing at myself for long periods of time, I am so pretty after all : )
Peyton Nicole Smith

Saturday, December 29, 2007

Saturday, December 29th, 2007

There is no better place to be than in my Daddy's arms. I never sit for Mommy more than a few minutes without wanting to change positions or be entertained, but I can sit with my Daddy for hours just rocking in the chair and never make a peep. Look how happy I am in my close up. As soon as Mommy got close to take pictures of me with my Daddy I would get grumpy and as soon as she would leave us alone I would calm right down. Mommy is trying not to feel too hurt - she knows I am a Daddy's girl.
I spent the evening before my bath in my bouncy chair in front of the T.V. Chili would come by every few minutes to give me a quick lick and then go off to play again with his toys. Henry pretty much ignores me most of the time.
Right before my bath started my Mommy put me in a tutu she found at Target for $1 and had me hold my wand (also a $1 at Target). I'm a princess, after all. Mommy was the one who fought me being a girly-girl but even she has given in now. Just the beginning of all the many dress up days to come in the Smith household.
Peyton Nicole Smith

Friday, December 28th, 2007

Mommy noticed today that when I am concentrating I twirl my hair. Funny, Mommy does the very same thing!

I reached a milestone today in my development. While I was laying on the rug watching T.V., I decided to roll from my back to my side to check out Daddy on the couch. After I did it once, I decided it was kind of fun and did it about 10 more times. I did it enough times that Daddy was able to get it on film for you all to see.

After all that excitement, it was time to relax on the couch and have some "pack" time. Those of you who know Cesar Milan the Dog Whisperer on the National Geographic Channel you know what that means. Mommy got his book from Karen for Christmas and her goal for next year is to become a good pack leader. Right now, Henry Lee seems to be running the show. How can a small doggie run a household? Well, I am only 10 lbs and I have the world revolving around me without much effort : )

Peyton Nicole Smith

Thursday, December 27, 2007

Thursday, December 27th, 2007

I am four months old today! See how much bigger I have gotten. I started out at 5 lbs. 8 ozs. and I am somewhere over 10 lbs now. You can see me enjoying my new crab rattle that Karen got me for Christmas - I think it is a lot of fun and it is the perfect size for me to hold.

Mommy heard this morning from my Aunt Kristin that my Great Grandpa Gil sprained his ankle last night and was headed to the ER this morning. Hope you feel better soon Grandpa!

Peyton Nicole Smith

Wednesday, December 26th, 2007

My parents were back to work today full-time so Lucille and I spent some quality time together. I like being held while Lucille rocks me. Mommy told Lucille that soon I will probably cry when she leaves!
Although it is not good, I really do like to watch TV. The lights are so cool and it keeps me entertained. Whether I am lying in my Daddy's arms in the chair or lying on a blanket on the floor it works every time. At night we all like to watch Judge Judy, Dr Phil and The O'Reilly Factor together.
I am definately feeling better but unfortunately my brother Henry wasn't feeling well today and couldn't keep anything down all evening (and into the early morning). There are definately some times when sleeping with doggies is not so much fun! Mommy is hoping he feels better come morning.
Peyton Nicole Smith

Wednesday, December 26, 2007

Christmas Eve and Christmas Day

Christmas Eve day I hung out with Lucille while my parents worked a few hours and spent some time relaxing with each other and my brothers. Christmas Eve my parents dressed me up in my Christmas jammies and I fell asleep really quickly because they told me if I did Santa would come and leave me presents during the night. (You can see my snoozing above). Christmas morning Mommy let me sleep as long as I wanted and then when I woke up she put me in my pretty Christmas dress that my Grandma got me and had me pose for a few pictures while I was still in a good mood. Then Daddy and my brothers got up and we opened presents. I got so many fun things! I got lots of books just like I asked for, clothes, a Cabbage Patch doll named Payton, and a floor excercise mat that has lots of fun sounds and things to see. My first Christmas was pretty quiet since I didn't get to go to Salt Lake but it was still very nice to be with my family. I am so grateful for all the wonderful presents that everyone got me - thank you! I am so sorry we couldn't all be together this year but I hope your Christmas was as wonderful as mine turned out to be. Here's hoping we will spend next Christmas together.
Peyton Nicole Smith

Monday, December 24, 2007

Sunday, December 23rd, 2007

It was another day with a continuous feed and my fungal medication. Although I am not back to my old self, I am getting closer. No spitting up of any kind today and my cough seems to be a little better. My mobile used to keep me entertained but now my swing is my favorite place to be. I eat in it, play in it and sleep in it.

Tonight I fought Daddy going to sleep but after about 10 minutes I gave up crying and quietly looked up at the ceiling until I fell asleep. Here's hoping for a good night's sleep for Mimi!

Peyton Nicole Smith

Sunday, December 23, 2007

Saturday, December 22nd, 2007

After Mimi left this morning, I slept for another hour of so for Mommy. Despite being up most of the night I was a pretty happy baby most of the day. I had several long naps to make up for the sleep I lost last night. Mommy started me on my continuous feed for the day today to see if that helps with the spitting up. Mommy went and picked up my prescription for the yeast infection. I am supposed to get 1 ml in each cheek for four times a day. Daddy spent about 5 minutes getting it all in me pretty slowly but despite his efforts it ended up coming all back up just a few seconds after he finished. Now, my parents are going to give me about 1/2 ml by mouth and put the rest in my Mic-KEY button.

Tonight I was still unwilling to be rocked to sleep. Rather then fight it with me for a few hours, Mommy put me in my swing and I rocked happily there for about 1/2 hour until I fell asleep around 8:30 pm. Mommy is hoping I am back to my regular routine soon.

Peyton Nicole Smith

Saturday, December 22, 2007

Friday, December 21st, 2007

Unfortunately, I am kind of on a roll with the spitting up. Right after my 8 pm feeding I spit up quite a bit of my formula. Then like clockwork, about 40 minutes after my 5 pm feeding I spit up in my swing.

Mommy put in a call to my pediatrician about getting a GI referral just to rule out other causes. When Dr Scott called back she said she would get the referral going but also needed to call in a prescription for me. Apparently, the test results came back on the secretions she tested from my visit on Monday and I have a yeast infection. Although it probably isn't causing my spitting up it is something that needs to be taken care of. My parents will pick up the medicine tomorrow morning. Dr Scott and Karen, my case manager, both suggested that I try continuous feedings during the day instead of the bolus feedings I have been doing to this point. So until I can get into the GI I am going to eat from 8 pm to 6 am and 8 am to 6 pm. Mommy can mix up the times in case I have a doctor's appointment. With the smaller volumes everyone is hoping that will nix the spitting up for a while.

I had a terrible time getting to sleep again tonight - it took almost 2 hours of rocking by Mommy and Daddy before I finally fell asleep in my swing. I have an awful cough that keeps waking me up. Mommy kept hearing the suction machine going all night and finally got up around 1:30 to check on me. Mimi said I had been up since 10:30. I was coughing constantly and couldn't sleep so Mommy took me from Mimi and was able to rock me to sleep. I slept in her arms until 5 am then Mommy transferred me to my crib. Hopefully I will feel better soon.

Peyton Nicole Smith

Friday, December 21, 2007

Thursday, December 20th, 2007

I tried really hard to keep the spit-free days going. I was really happy in the morning for my parents and Lucille but I did spit up a little after my 2 pm feeding. Then, about 45 minutes after my 5 pm feeding when my parents were playing with me on my changing table I had some projectile spitting up. I must be off my routine because for the second night in a row instead of falling asleep when my 8 pm continuous feed started I stayed up for several hours and fought going to sleep.

Mommy had an interesting experience today. She went to go get gas and there was a CHP officer gassing up next to her. She walked up to him and told him about the presents I got from CHP at UC Davis the day before and she said she wanted to say thank you. The officer seemed a little uneasy when she first started talking to him but in the end he said "Thanks and have a Merry Christmas".

Peyton Nicole Smith

Thursday, December 20, 2007

Wednesday, December 19th, 2007

Mommy got up early this morning and called my nurse, Diane to check on me. Diane let her know that the feeding last night went well and they continued to increase the volume. This morning they will do a bolus feed like I would normally get to make sure that stays down as well. Diane told Mommy that I was smiling for the nurses this morning so Mommy was pretty sure I must be feeling better. Diane said she thought I would be discharged today so Mommy and Daddy let the nursing agency know so they could start working on getting me nurses again. My parents spent a few hours running around getting ready for my arrival. They spent some time cleaning and organizing so everything would be perfect when I got home. Then they grabbed a quick bite and headed to the hospital.

They could tell immeadiately I was feeling better because I was very happy to see them. My lungs are still sounding yucky and require a lot of suctioning so Mommy and Daddy will keep my trach mist on all the time until I start to feel better. The Child Life Program at UC Davis put a mobile in my crib to keep me entertained and gave me a pretty crocheted blanket and beanie baby to take home with me. The California Highway Patrol also dropped by the PICU and NICU today to bring toys to all the kids. They left me a rattle and video. Since I already had the very same rattle, Mommy gave it back to my nurse and said to find another baby who would like it. I haven't had a bath or a trach change and smelled terrible! But I was keeping my feedings down and having bowel movements so my parents decided the bath could wait until I got home.

I arrived back home around 2 pm and Mommy started my feeding. I went right to sleep and slept for several hours. When I woke up, my parents decided it was time for my trach change and my bath. I felt so much better once I was all clean!

My 5 pm feeding went well and I fell asleep again for a little while. Normally, when my parents start my continuous feeding at 8 pm I fall right to sleep but I had a hard time getting back into my routine tonight. I fell asleep several times while Mommy was holding me but every time they tried to move me to my crib I would wake back up. Finally, I fell asleep for good around 9:45, right as my night nurse Mimi was showing up.

Mimi was very sweet and brought me pink roses, a Get Well Soon balloon and a sweet card. She said she had been saying the rosary for me and had called Methodist Hospital trying to see if I was there so she could come to visit me. She said she was very happy to see me sleeping soundly and back home in my crib. It is very good to be home.

Peyton Nicole Smith

Tuesday, December 18, 2007

Tuesday, December 18th, 2007

Now that I am feeling a little better I can give you an update on the last few days. In the first picture above you can see that on Sunday I was feeling pretty good. I did spit up after one of my feedings but not too much. Then everything changed on Monday. Mimi told Mommy I had more secretions then normal but Mommy didn't notice anything really strange until 7:30 when I vomited. Since I had last eaten at 6 am Mommy would have expected formula but it looked more like something that you would see if I sneezed. I was scheduled for a GI study at 10 am so I didn't get my 8 am feeding. Right before Mommy and Lucille left to go to the doctor's appointment I started vomiting again several times. They got to the appointment and I continued vomiting so the radiologist decided to cancel the GI study until I was feeling better. Since the vomiting was so strange and I hadn't eaten for over four hours Mommy got an urgent appointment with my pediatrician Dr Scott. I continued to vomit at the doctor's appointment but since my tummy was soft and I wasn't running a fever, Dr Scott decided to take a sample of what was coming up just to verify whether or not it was really coming from my tummy or if was coming from my lungs. Meanwhile, I still got my Synagis shot and went home. Dr Scott had Mommy and Lucille feed me 1/2 feedings. For a little while I slept but the vomiting eventually started again. Mommy noticed that my Mic-KEY button was really tight and she could barely turn it which seemed really strange and the vomiting started to change to a brownish color. I was even vomiting during my feeding but it wasn't formula coming back up. By that time Daddy was arriving home from work so Mommy and Daddy decided to take me to the ER and left Lucille to wait for her ride.

Mommy and Daddy waited with me in the ER waiting room for about an hour before they got moved to a room with me vomiting off and on. They took a picture of my tummy and it showed that below my button my intestines looked just fine but above my button my tummy was full of gas and my belly was distended. The ER doctor thought I might have an obstruction and made a call to the pediatrician on call to come take a look. Meanwhile, they needed to get blood work to start some tests. Unfortunately, I have been told I am a hard stick. Over the next four hours I went through four different nurses and probably 20 sticks before they were finally able to find a vein to put the IV in. Not only did I cry because it hurt but I would also get so upset from the sticks and the vomiting that I would hold my breath and start turning blue. This happened probably four or five times. I have never done this for my parents before and it was very scary. The pediatrician eventually came to see me but said they couldn't admit me until they had a room to put me in and unfortunately the hospital was full of pediatric RSV patients (thanks goodness for my Synagis shot!) Several more hours passed until about 1:30, the pediatrician came back in and said that after discussion they decided to transfer me to UC Davis. Mommy and Daddy were very relieved because that is where I stayed for six weeks in the NICU and they know that is probably the best place for me. All told, Mommy and Daddy waited with me for about 10 hours in the ER at Methodist Hospital before the transport team from UC Davis arrived. I would sleep for a little while, wake up to vomit and then fall back to sleep. It was a very long night so when the team arrived around 3:30 my parents were very happy to see them. It took about 1/2 hour to get me prepped to get in the ambulance. Before they moved me to the stretcher I gave Mommy and Daddy a big happy smile so they knew I would be okay and not to worry too much. It was the first smile Mommy had seen in almost 24 hours. One of the transport nurses gave my parents a big hug and I was on my way.

After I left, Mommy and Daddy said goodbye to my nurse in the ER who gave them big hugs, wished them a Merry Christmas and told them with teary eyes she would be praying for me. Mommy and Daddy shed quite a few tears, too, although they tried to wait until I was taken away so I wouldn't see how upset they were. Mommy and Daddy stopped by the house to check on my brothers and get some coffee to take to the hospital and then they were on the road too.
Mommy brought my Santa doll for my crib so I would have something from home. They met me in my room and I rested off and on over the next several hours, waking up to vomit every so often. The doctor's came to work around 9 am so Mommy and Daddy stayed with me until they arrived so they could find out what the plan was for my care. I was in my own private little room with a nice view of Sacramento but the nurses told Mommy it was only temporary until a bed opened up in the other part of the PICU. The doctor's came by and said they were going to take some more pictures of my tummy and try to find out what was causing the obstruction although they had a feeling it was the button, too. They excused Mommy and Daddy to go home and get some sleep.

My parents got a few hours of sleep and then Mommy called to check on me. The nurse let them know that my Mic-KEY button was too long and had migrated from my stomach into my pyloris and was blocking it. They were going to order a smaller button and then have it placed and start a feeding. Mommy and Daddy took showers, dropped the boys off for a few days at Camp Bow Wow and got something to eat and headed back to the hospital. When they arrived I had been moved to the other PICU and was in an open room with lots of other pediatric patients. My neighbor was a boy who was probably 16 or so - so I was one of the smallest patients they had.

Mommy and Daddy noticed right away that I looked a lot better. My button hadn't been changed yet, but the doctors had drained some of the water from the balloon to allow the button to pull out a little and keep it from obstructing my tummy. As long as I stayed laying on my side the button would stay out and I was resting pretty comfortably. The nurse said that ever since they had pulled the button out a little I hadn't vomited any more. At this point it had been over 24 hours since I had any food and only water so I was getting pretty hungry. Although my tummy was feeling a little better my parents noticed that my breathing didn't sound very good. They put some saline down my trach to help and right away I coughed up a lot of green stuff. After that I was breathing a lot better so they are hoping that it was just a one time secretion and I am not getting a respiratory infection on top of everything else! While they were waiting for the pediatric doctor to show up to change my button they snapped a few pictures of me in my crib in the PICU. Eventually, the doctor arrived and changed my button. You can see my nice new button in the picture above. The nurse started me on 10 cc's of formula for 2 hours to see if I will hold it down. Since I was resting so well and it was getting late, my parents gave me kisses goodbye and told the nurses they will be back tomorrow. They are going to go home and try to get a good night's sleep and hope I get one as well. Mommy and Daddy can't even remember the last time they didn't have a baby, a nurse or a doggy in the house - they are going to be all by themselves tonight. I think they are going to be a little lonely.

So that is my update. I know it is really long but wanted to catch you up on what has happened over the last few days. Mommy and Daddy are very sad that they won't be able to introduce me to all of you but they are very thankful this happened in Sacramento and not while they were en route to Salt Lake City. Have a happy holiday and I hope to see you when I am a little bigger and feeling better.

Peyton Nicole Smith

Tuesday, December 18th, 2007

I am very sad to say that I won't be able to see you all at Christmas like I had hoped. I don't have a lot of time to talk now but yesterday I started thowing up a lot so Mommy and Daddy took me to the ER at Methodist Hospital where I was born. After being in the ER for 10 hours, the doctors decided it would be best for me to go back to UC Davis. So just like before, the UC Davis transport team came to pick me up and took me back with them. Since I am not a newborn, I am now in the PICU (Pediatric Intensive Care Unit). Mommy and Daddy are waiting for the doctors to do some tests this morning but they believe there may be an obstuction between my stomach and my intestines at the site of my Mic-KEY button. I'll let you all know how I am doing when I can. Thanks for all your prayers!

Peyton Nicole Smith

Sunday, December 16, 2007

Saturday, December 15th, 2007

In case you haven't heard, Daddy does not like headbands. But Mimi, my night nurse got me a few outfits and one included a headband. So before Daddy got up this morning Mommy had it on me. Daddy still doesn't like headbands, but on me he thinks they are pretty cute.

Mommy found some headphones today designed for kids. My parents decided to hook up Mommy's iPod and see what I thought. At first the music must have been too loud because I started crying. Eventually, though, I settled into a nice groove with John Cougar Mellancamp and relaxed.

It was another no-spit today and I spent most of happily in my swing. Here's hoping the formula really is working!

Peyton Nicole Smith

Friday, December 14th, 2007

It was a no-spit day - SWEET!

Peyton Nicole Smith

Friday, December 14, 2007

Thursday, December 13th, 2007

Mommy got my appointment set up today for a study of my tummy on Monday at Methodist Hospital - it will be the first time I am back there since I was born. Last time I left there it was in an ambulance so hopefully this will be a better experience for all of us!

I spit up for Lucille again today so Lucille said she is starting to develop a complex since I only seem to spit up for her now. Mommy said she's just glad someone else has a complex about it besides her!

Just a few more days until we get on a plane to Salt Lake City! I am so excited to see all of you!
Mommy went and bought me some cute, warm outfits for the trip and a warm, fleece suit to zip me up in when it is cold out. See you soon!

Peyton Nicole Smith

Wednesday, December 12, 2007

Wednesday, December 12th, 2007

Mommy had been hoping for a spit free day now that I am on my new formula but unfortunately, I spit up in the midst of my 2 pm feeding today so Lucille stopped the feeding to prevent any more. The rest of the day was pretty uneventful but Mommy was a little disappointed. She is going to give the formula a few more days just to make sure.

Peyton Nicole Smith

Tuesday, December 11th, 2007

Mommy left a message for my pediatrician today about wanting to stop the Reglan. The pediatrician called back and recommended coming in for an appointment to do a weight check and talk about options. Mommy and Lucille brought me in to Dr. Scott in the afternoon and I weighed in at 10 lbs! Apparently, the spitting up is not preventing me from gaining any weight!

Dr. Scott and Mommy talked for awhile about my symptoms and Dr. Scott didn't feel another medication was the answer - if Reglan didn't work she didn't think anything else would either. So she is referring Mommy to a gastroenterologist just to make sure there are no issues relating to my Mic-KEY button and sending me for a GI study to rule out pyloric stenosis. Since I am gaining weight so well it is unlikely that I have a medical problem but Dr. Scott would still like to check it out. Dr. Scott gave Mommy some samples of Similac Sensitive R.S which is a premixed formula that is lactose free and has rice starch added. Between the two, she hopes it might help with the spitting up a little. Mommy goes back in with me on Monday for my Synagis shot so they will do another weight check and see how things are going with my new formula. Knock on wood but today was the first day in a few weeks where I didn't spit up so Mommy is hopeful that the new formula will help.

It's kind of funny, but Mommy decided to write Peyton Manning a letter. Because people kept asking her if she named me after him, Mommy had been joking that she was going to write him a letter and she finally got around to doing it. Daddy read it and said they will soon be getting a visit from the FBI or something since Peyton Manning is going to think Mommy is some weird stalker but I thought the letter was kind of sweet. Mommy doesn't think she will ever hear back from Peyton Manning but she is going to put the letter in my baby book for when I am older.


I know you receive lots of requests for autographs, time, donations, etc. Let me assure you, I am not writing you for any of those things. I just want you to know there is another Peyton in this world that you ought to know about.

When I was young, I remember hearing about a soap opera called Peyton Place. I knew when I grew up and had a little girl I would name her Peyton. I hadn't heard the name again until a few years ago when the name Peyton Manning kept coming up. Not being a football fan, I had no idea who Peyton Manning was but when I told all my family and friends I was naming my daughter "Peyton", they all thought I did. In the delivery room the nurse assumed my husband won some bet and that is why we were naming her Peyton!

Babies have a way of changing the lives of those around them, but I don't think anyone could have prepared us for what we have encountered in the few months since her birth. Peyton Smith was born with a rare genetic condition called Nager's syndrome. She spent the first six weeks of her life in the NICU at UC Davis Medical Center. She had several surgeries in the first few weeks of life to ensure her survival including a tracheostomy to secure an airway and a gastronomy tube to allow her to receive nutrition. She will have many more surgeries to come and more challenges then any child should have to endure - but she will make it and she and everyone else around her will be better for it.

For many years, people will associate the name Peyton with you and I am just fine with that, but be prepared that someday in the future when people hear the name Peyton they may not associate it with a big football player. Instead, they are going to remember my daughter because she will inspire them as much as she has insipred me and all those who have come in contact with her. Since I know you have made a difference in many children's lives with your PayBack Foundation, I thought you might want to hear her story. Peyton Smith may be changing the lives of those around her for the better but it's nice to know there is another Peyton out there making this world a better place too.

Tracy Smith

Mommy included a link to my blog and my picture for Peyton Manning. If she does ever hear back from him I will let you all know. That's all for now.

Peyton Nicole Smith

Tuesday, December 11, 2007

Monday, December 10th, 2007

It was a rough day for me today. I had two spitting up incidents - once with my 8 am feeding and once with my 5 pm feeding. Mommy has had enough of the Reglan and is going to call my doctor tomorrow to ask for something else. She found some scary info about side effects on the internet and if it is not helping she doesn't want me to stay on it any longer then I need to.
My physical therapist, Michael came by today for a visit. He made me do lots of funny things to test out my motor skills. I am a little behind in some areas, most likely because I can't spend time on my tummy like most babies. Michael taught my parents some exercises they can do with me to help me develop head and neck strength without putting me directly on my tummy. He is going to start seeing me every few weeks to make sure I am progressing like I should.
Mommy received the DeLee suction catheters in the mail today that she had ordered. These will allow someone to suction my trach without the use of a machine. One part of the tube goes in my trach and the other part of the tube has something on the end to suck on. In the middle is a tube to catch any of the secretions. Kind of sounds gross but it is a back up in case of an emergency. Mommy stuck one in my trach bag and hopes never to have to use it!
Peyton Nicole Smith

Sunday, December 9, 2007

Sunday, December 9th, 2007

Mommy and Daddy had a few errands to run today, too, so I got quality alone time with each of them. Mommy ran to Circuit City to get some printer cartridges and Daddy went to work to print off some reports. We also got my medical records from the six weeks I was in the NICU at UC Davis and Daddy scanned them to a disk. You should see the volumes that have been written about me already! Mommy and Daddy had fun reading the nurses notes that mentioned them. There was even a note about when my Aunt Kristin roomed in with me.
Just as my 2 pm feeding was ending today, I had a big sneeze and up came a lot of my feeding. Mommy is getting a little worried that this new medication may not be doing anything but she will give it a few more days to see what happens.
Peyton Nicole Smith

Saturday, December 8th, 2007

Mommy and Daddy traded off time with me so they could both run a few errands today. Daddy went and got a haircut and Mommy went grocery shopping. Daddy also let Mommy take a nap since she gets up early with me every morning. Unfortunately, while she was taking her nap I spit up a lot of my 2 pm feeding just a few minutes after it ended. Mommy is wondering how long it will take before she notices a difference with my new medication.

My Aunt Kristin called today and while Mommy was talked to her, Daddy brought me over to the phone so my Aunt Kristin could say hello to me. Both times she talked to me I got a big grin on my face. I might be a little hard of hearing but I can still hear my Aunt Kristin all those miles away!

In the afternoon Daddy and I watched TV from the LazyBoy - our favorite spot!

Peyton Nicole Smith

Friday, December 7th, 2007

Mommy thought for sure this would be a quiet day. After all, there were no doctor's appointments scheduled and just a visit from the nursing agency supervisor - no big deal. Well, that was not to be! While Mommy was on a conference call with work, Lucille came in to the office to let her know my Mic-KEY button fell out! Lucille just planned on replacing it and telling Mommy later so as not to stress her out but Lucille couldn't find the spare one and had to come get Mommy. Mommy put in a call to Daddy and found out it was in medical bag (good thing he hadn't shipped it to SLC yet!). By then several minutes had passed and both Mommy and Lucille tried to get my button in but it was not working. Lucille tried one more time and with a lot of elbow grease she was able to get it in! The reason it is so important to get it in right away is that the hole can close up in minutes and then I would have to go back into surgery to get it placed again. Needless to say, that rattled Mommy a little. Mommy and Lucille checked out the button and found that it had a leak in the balloon that holds it in place under the skin. They couldn't figure out why it had leaked since they are supposed to last at least 3-4 months and mine was only a month old. The answer was revealed later....

In addition to my button excitement, Mommy started me tonight on my first dose of Reglan that is supposed to help with my acid reflux. None too soon since I had another spitting up incident tonight after my 5 pm feeding.

When Daddy got home from work he asked Mommy if she thought my night nurse, Mimi, might be putting my "flush" in the wrong port on my button. There is a port on the top which is where my feeding tube is attached. That is also where I am supposed to be getting "flushed" with a few cc's of water after each feeding to make sure the tube doesn't get blocked with formula. Mommy learned about doing that on Monday when she went for my follow up appointment. There is also a port on the side of the button labeled "BAL". That is where the balloon is emptied and filled with water. Sure enough, when Mommy asked Mimi that night to demonstrate where she was "flushing" me - she pointed to the BAL port. Oops!! For several days she kept adding a few more cc's of water until it got to the point it couldn't take anymore and burst. Needless to say, Mommy and Daddy demoed for Mimi the correct place to flush me in the future.

Peyton Nicole Smith