Jada Rose
Journal
This is a Journal that was being kept before Jada Rose had her transplant, and after. I (Jada's Dad) attempted to use a first person account as if Jada Rose herself was speaking. During her hospitalization it was simply too hard to maintain the often jovial tone that I had previouslyused in a first person account. * If you want the more recent updates, you will need to scroll down to the bottom of the page. This account is in chronological order
SATURDAY, APRIL 15, 2006 10:53 PM, CDT
Today is my first day home! Well actually I am at Grandma and Grandpa Aders house for a while. It seems Daddy cant keep himself healthy enough to smother me with kisses. He has a cold and I see him from time to time at least I think thats him behind the doctors mask. Last night Aunt Teya-bird stayed all night with me in the hospital so my mommy could go down to the trailer in the parking lot and get some sleep. What a great Aunt! Today when Mommy dressed me at the hospital I smiled at her to show how happy I was for one to be wearing my Ute gear and two to be finally leaving PCMC. I'm going to miss all the nurses there, I owe my life to them. I'm especially going to miss a special nurse named Elizabeth who spent two nights and one day in the PICU. On the way out the hospital, I threw out a few more smiles to the nurses who discharged me. We (Mommy, and Grandma Dawny) had a nice ride home, stopping at Wendys and home. Daddy smiled at me through the glass, I slept alot and ate some. When I got to Grandma Dawny's we settled in and I ate 60 ml of formula! I kept it all down! I sleep some, and give a little cry now and then, but for the most part am pretty happy. My tummy is still pretty enlarged but the doctors said that would be normal. My poop isn't as dark as everyone would like but its showins some signs of bile. Today my Dad and Mom went to the Ute football scrimmage while Grandma Rose watched me at the hospital. Apparently Ratliff did a great job Marquis Wilson is going to be a great reciever, he scored two touchdowns! I will get an update tomorrow, hopefully the Easterbunny will come tonight and leave a diaper full of GREEN GOLD!
SUNDAY, APRIL 16, 2006 11:10 PM, CDT Happy Easter!
Today Mom stayed home from church to take care of me. Grandma Aders spoke during sacrament meeting. Daddy went and said Grandma did a great job! I am looking very jaundice in the morning and early afternoon, but that seems to fade later in the day. Dad got to hold me for a while wich was wonderful for him because its been days since he's been able to do that. My little eyes are pretty yellow but that doesnt take away from how I am able to charm everyone who looks my way. My poop is a baige color Daddy is so wierd every time I poop he examines it looking for any sign of bile. He needs to just relax and know it will all be ok, and realize it kind of freaks people out when they see him with his eyes two inches from my diapers! I am having a tougher evening but considering that I only take Tylenol for pain I would say I'm doing pretty well. Tomorrow I have an appointment to see my surgeon Dr. Meyers. I may need to have a picc line put in to give me a constant boost of steriods and antibiotics. Love you all and I will check in soon.
MONDAY, APRIL 17, 2006 10:44 AM, CDT I went in to see Dr. Meyers at 2:00. It turns out that I have a hernia from all the pushing and crying. Dr. Meyers said it wasn't anything to be worried about right now, but will be addressed later on. My poop isn't as dark as they would like, but it is showing some signs of bile. GOOD NEWS for today is I wont need a picc line! Dr. Meyers is overall content with how I am doing, and believes that oral steroids will be sufficient.
TUESDAY, APRIL 18, 2006 08:11 PM, CDT Today was an average day. I got a decent nights sleep from about 4:30 to 8:00. I also had a bath and feel great from that. I am a little less jaundice today, but my poop is lighter. All pray for my poop to turn green!
THURSDAY, APRIL 20, 2006 11:01 AM, CDT We have had a few really good days! I am sleeping in the night at three to four hour intervals. Mommy has to wake me up to feed me. I am now at my own house as daddy is feeling much better. My poop is staying an encouraging light green. No complaints from mommy or daddy! Tonight I am planning on going to my dads softball game! I am hoping that it is fairly warm and the bugs arent very bad as that would make for a short trip!
THURSDAY, APRIL 20, 2006 11:20 PM, CDT
A great day! Good diapers, and I got to see dads softball team win their first game of the season...actually I slept through it, but it was good to be outdoors, and it was good to finally meet Avery, and Sophie (friends).
FRIDAY, APRIL 21, 2006 11:28 PM, CDT Average day, spent alot of time at Grandma Dawnys house while dad worked on their furnace. Had some difficulties keeping my meds down, but who wouldn't? I take 6 medications twice a day! Tomorrow Dad and Mom are going to the red and white game GO UTES! I get to spend time with Grandma Rose. For me it is a kick off to a weekend at Grandma Roses house because I will be there all day sunday.
SATURDAY, APRIL 22, 2006 10:48 PM, CDT Today daddy and his buddies went to the Red and White game. They ran into Brett Ratliff's parents and daddy even made Brett Ratliff throw him a "touchdown pass"... He caught it! Guess Daddy still has it. Brett and his family spent most of the time with the the boys. They loved that! Daddy expressed to Bretts mom how much inspiration her son and the Utes gave him during this time referring to their never give up attitude displayed this last fall. Daddy said Bretts mom started to cry and said she would keep me in her prayers. I spent the morning with Grandma Rose, she gave me a bath...LOVED IT! Then I drove down to Provo (Daddy says I need to call it "down south" from now on) with mommy, grandma Dawny, and Grandma Aders. I think it was a little too much driving for me because all evening I couldnt hold anything down. At 10:00 pm I finally held down a couple ounces of Pedialite. Mommy and Daddy say they don't know how I can be so strong, they said that in their hearts they believe I have more strength, and heart then both of them combined...they are probably right...what can I say? I'm one tough Ute!
SUNDAY APRIL 23- THURSDAY APRIL 27 Sorry for the lack of updates! It has been a pretty busy week for everybody! Daddy and Grandpa Aders decided to take the boat down to lake powell to put hours on the new motor that Grandma Rose bought. While they were gone, mommy came down with a horrible tooth ache and went in to see the dentist. She had to have a bone graft put in her jaw on Thursday morning. I thought she needed a good pick me up, so while she was in the operation I showed Grandma Dawny what a nice green poop looks like! I've been saving up for about a week so it looked (wink) reeeaal niiice! Mommy is down and out with recovering, and Grandma Dawny and I are taking care of her. Grandpa Aders and Daddy almost sank the boat in Lake Powell !! Nice work guys!. During all this I went in to see doctor Book; she said that my liver looks more scarred. That makes everyone worry a little because all this is trying to prevent my liver from getting more damaged. However the Doctor said that if the Kasai starts to work regularly then perhaps the scarring could be minimized. They also said my spleen is still quite enlarged. I just smile at everyone and tell them to calm down. With time faith, prayers, and positive thinking this is going to work!
FRIDAY APRIL 28, 2006 9:35 PM, CDT
Today was an easygoing day, I spent all of it taking care of mommy and her swollen mouth. We are staying up at grandpa and grandma Aders for a while until mommy starts feeling well. Daddy sure is thankful for grandma Dawny when I start my morning exercizes! Tonight daddy brought both the dogs up to Grandma and Grandpas house and they just sit outside the window looking in at me. My poop is turning more toward the yellow color, but my jaundice seems to be getting a little bit better.
SATURDAY APRIL 29, 30, 2006
Sunday I am going up to my uncle Bobs and Aunt Claires house for dinner. I am excited because I havent been there before...of course theres alot of places I havent been yet! Yesterday Mommy and I went on a walk! I loved watching the birds fly by and the trees wave in the breeze! I think I'm going to be one of those outdoor girls. Tomorrow I am going in to see the surgeon Dr. Meyers. My belly is still quite large and that has mommy and daddy worried. I am still giving off plenty of smiles as often as I can.
MONDAY MAY 1, 2006 Today I went to see Dr. Meyers (my sergeon) She said my bilirubin count has dropped! She also saw my poopy diaper and stated and I quote " she's dumping some bile!" This is so great! Now we all know there will be ups and downs as is always the case with BA kids, but I sure enjoy the up days as this one is! However Dr. Meyers wanted to make sure that we knew it still wasnt enough bile. And that I need to pick it up more.I am on a diaretic to help me drop some extra water that I am retaining. Tomorrow daddy is going back to work. He is excited but heard that there are some trouble makers that are on his team who werent there when he left. That will be good for him to worry about some other kids "shit" other than mine. (daddy made me say that word, I dont talk like that).
Wednesday May 3, 2006 Well today was my worst day since my surgery! Last night mom discovered that I was running a temperature of 102 so she took me into the ER. Dad was working so he wasnt there. When I got to the ER they decided to watch me and give me heavy antibiotics. Heres what the doctors think was going on. I probably have colongitus, that is where my new duct running from my small intestine leaks bacteria into my liver. This made me pretty sick. Now the scarry part was when they gave me the antibiotic, I went into septic shock and stopped breathing. Mommy and Grandma Aders were screaming for help, and everybody started working on me. They even put an iv into my head...ouch!! Well to make a long story short it is now 8:00 pm and I am stable. In fact they have given me another shot of antibiotics and I am doing well. My blood pressure is almost to normal, and I may be able to eat tonight. However I am going to be in the hospital for what looks like a week or more. I love visitors so just call my daddy and he will tell you where I am. I also have a picc line in and we dont know if I may need to go home with that in. Its ok though everybody. I am going to get through this. Often they say BA kids take two steps forward and one step back. A few more steps and I'll be caught up. My bili count is still very high. So the doctors are starting to wisper liver transplant. But I still think I can do it on my own so they are letting me have some time to make it work.Thursday May 4, 2006
I am now up on the floor! I have been moved out of the PICU, and am being fed regularly. Today Grandma Rose gave me a bath aaaahhh it felt so good! I just sat there and enjoyed the warm water and the scrub down. This was my first submersed bath! Last night Elizabeth my favorite nurse from when I had the Kasai was able to watch me. As soon as she got there it was like everything started getting better, my temp dropped, as did my blood pressure, and I even squeezed out a little grin from time to time. Mommy and Daddy love it when she is there because they can go get a good nights rest knowing I am in the best of hands. Dr Booke said that my poop may get darker, but told mommy and daddy not to get too excited about it as my liver looks to be scarring more and more and with each day a liver transplant looks closer and closer. Hopefully this Kasai can buy me some time so I can put on more weight to handle a procedure like liver transplant. Well I absolutely love visitors! Today cousin Scott and aunt Tracy with little issac came up to see me! Then Uncle Zak and Aunt Loni spent some of the evening. If anyone wants to come see me visitors are welcome and I absolutely love it! Just call my Dad and he will tell you how to find me. Tonight Grandma Dawny is going to spend all night with me at the hospital so mommy and daddy can get some sleep. I am so excited to cuddle with her tonight, she is awsome!
Saturday May 5, 2006
Today I was bright eyed all day long! Mom and Dad were able to stay at their friends Abbey and Andys for the last two nights. This is really nice because they only live a few minutes from the hospital and they can be here in a moments notice. Tonight it is just Mommy and I. Dad has to go to work in the morning so he is sleeping at home with the dogs to keep him company. Tonight I had a visit from Aunt Claire and Uncle Bob! I thought Aunt Claire was so wonderful I just threw a few charming smiles her way. And of course Uncle Bob and I exchanged empathetic glances as he and I both know what its like to spend large amounts of time in a hospital with nurses probing you all night long. Aunt Loni and Uncle Zak also showed up for the evening. Uncle Zak even made a special trip all the way back to our house late in the evening to make sure I had some clean socks for the night! What a guy! The doctors say my liver still seems pretty hard. My levels are all elevated again, so they are watching me close. I sure am excited to go home! I already have offers from Aunt Loni, and Aunt Teya to stay up all night sometime this week so mommy can get a good nights sleep every couple days. I'm excited to cuddle with them. My new thing is I like to burry my head into the neck of whoever is holding me and snuggle real close. This puts me to sleep real fast. But dont even think of setting me down because I will let you know I want to be held! I'm a little "high maintenance" in that way. These nurses on the fourth floor are great, but I sure do miss my Elizabeth ! Sometimes I'm temted to fake a fever so they will put me back with her for the evening. She is truely one of the most important persons in our familys lives. Everybody knows who nurse Elizabeth is.
Sunday May 6, 2006 Possibly comming home on Monday! keep your fingers crossed!
Monday May 7, 2006 I am finally home again! Actually this time I am at Grandma Roses house. We feel like things are cleaner there right now and we have the most support in assisting me throughout the evenings. All of my tests are very high. My GGT's are in the 3000's. My bilirubin is fluxuating up and down from 12-9. I did get a blood transufsion on Sunday and it helped my color and overall attitude alot. Well I will keep you guys updated. There may possible be a change to my website's poop watch. We may need to start watching my weight to make sure I am gaining enough weight in order to help me in what looksto be a liver transplant situation.
Monday May 15, 2006 Well in the last week I have returned to the hospital twice. One was un planned, I was throwing up a LOT on saturday night so mommy, grandma Rose, Daddy and I all went to the emergency room. Turns out I was just trying to get in to see my favorite nurse in the PICU...didn't work, they sent me home a couple of hours later. On mothers day I gave a couple of diapers with bile in it for mothers day! Not a lot but the best I could do. I went in to see dr. Booke today and in two weeks I will be added to the liver transplant list. I am still pretty healthy so I am probably not going to get a liver anytime soon. However, if a liver from a donor shows up at the hospital I am registered at, and it is a perfect match, I will get it! Dr Booke said that the goal is to get me to my one year mark. She wants me to weigh at least 20 pounds! She said I probably will get more sick between now and then, and that its a possibility that my Kasai may begin working as it should. Keep your fingers crossed, and watch for the new "weight watchers" link to be added to my web site. As for right now I am happy. Love you all, come and visit me soon.
Thursday May 18, 2006 I have been doing ok lately, as of Tuesday I am up one ounce, to 7 pounds 13 ounces. I am only taking my sterriods by IV and hopefully in a week or so I can get my picc line out. I am staying a couple of nights at Grandma Dawny and Grandpa Nolans house. My color varies one day I look really jaundice and the next day I am almost a normal skin color. I'm a very unpredictable girl. Tomorrow I have an appt with Dr Havlik to see how much I have gained in the last three days. Hopefully I am putting on 1 to 1/2 ounces a day.
Sunday May 21, 2006 I have been staying at Grandma Roses house for the last little while. Aunt Teya had a baby shower for little Troy Danny. She got all kinds of cool toys that I am trying out. Yesterday I had a nice big blob of bile in my poop! That ends another drought. However, I have not had much since then. I am just enjoying the nice weather, I get to go outside alot for bar B Q's and to watch people swim in the pool next door.
Wednesday May 24, 2005 Today I have been hanging out with Grandma Dawny while Daddy went to work and Mommy took care of bills, chores, etc. Tomorrow is a pretty important day. Tomorrow Mommy, Daddy, Grandma Rose, and Grandma Dawny are all going to Dr. Booke's office to take a class on liver transplant. They have a whole bunch of questions to ask and I have a few to ask myself, like when is this fun picc line going to be taken out? Daddy is going to post the information on my TX link. After the class I am going to go home and take a nap while daddy goes back to work and then to his softball game. I'm pretty disapointed with how he's been hitting the ball lately. I keep telling him he's pulling his head, and taking way too deep of a step. But he doesnt seem to get it. I'm not going to his games for a while until he starts hitting again....that and I get a tummy ache from staying outside on those bleachers for too long. Tomorrow night the bishops wife is comming over to take a tutorial on how to babysit me. She wants to watch me while mommy and daddy go out on a date. .
Sunday May 28, 2006 We have been to the class on liver transplants. There is sooooo much information that we learned from it. Our TX section will contain all the information, and should be updated on Monday the 29th. Mommy and Daddy are going to get a pager that will notify us when a liver is ready. We absolutely cannot leave the Wasatch front in between now and that time. They warned us that carrying the pager is a very stressful thing because it is always there reminding us that we are waiting for the unknown. Once I do have a liver I will go into a special wing of the hospital for 2 to 4 months!! Then life starts over with a whole new set of rules. Lake Powell is going to be a thing of the past. The water in standing lakes just containes too much bacteria for my immune system. Those of you who know about our family understand what an enormous change that will be. Daddy and Mommy are thinking of some other family vacations that they can start in place of LP. Grandma Rose said this would be a great excuse for her to put in a pool! This way she can maintain the perfect chlorine level and I can play and learn to swim! I will be able to go into the ocean so vacations on islands with swimming in the ocean and SCUBA diving will be a good option. And of course we will continue to follow the Utes during the falls. On Thursday I met a special little girl with BA who just recieved her transplant in January and she looked very good! Her skin was a beautiful pink tone and she had plenty of body fat. I think she was kind of jealous of my tan and girlish figure. She was an amazing girl who had many problems and became very sick before she finally recieved her liver. Also there is a family in a neighboring town who has a child with a new liver and they want to meet us! We are excited to ask them questions, and hear their story. Tonight Grandma Rose made the trek up to Grandma and Grandpa Aders just to see little ol me! I had just finished my bath so I was very happy to see her. She held me and I went to sleep. Tomorrow Daddy said he is going to spend all day with me! Last night he and mommy went out on a much needed date! They said they had sooo much fun together. I was sad to leave the Bishops house but was glad to see mommy and daddy again. Daddy said he did hit better in his softball game, he went 3 for 4 with a double and two singles. I told him its not good enough and I'm not comming until he can do better. Good night everybody I love you for caring and stopping by to see how I am doing. Daddy and Mommy says to thank all their wonderful friends for everything they have done for us. Andy, Abbey, Rob, Angel, Tipp, Chad, Taylors, Fowlers, Cheryl Lee, Jared , Brock, Bob, Claire, Shorts, Loni, Zack, Teya, Sean...the list goes on and on and on! We love all of you!
Thursday June 1, 2006 Tomorrow I am recieving the second phase of my blood tests that are required for me to be on the transplant list. I am also going to get weighed. Hopefully I weigh around 8 lbs 4 ounces! That is our target for the last several days. Tomorrow evening the TX section will have that update under the Dr. Havlik link. Even bigger news is I may be getting my picc line out tomorrow! That means endless splashing around in my bath tub, no more getting scratched by the line, and less worries for mommy, daddy, and grandma's. We all understand that I could get it back in at anytime due to an infection, but lets all pray for that not to happen. Daddy informed me that he went 4 for 5 in softball tonight. They won 26-8. I have been having a harder time sleeping lately. It seems that I need to wake up every 2 hours or so to tell my family about tummy cramps. Last night I was up a couple times with daddy, it was actually kind of nice because we looked up our Utes and talked about how good they are going to be this season. One magazine had them ranked 15th in the country! I'm worried about the running backs this year but daddy says this Poston kid out of USC is pretty good. I just think he is way to injury prone. I was bummed to hear I may not be able to see many home games this year, but daddy promised me he would record them and watch them with me. Tomorrow night I was pleased to hear Abbey and Andy will be comming up to have some dinner with us! Last night I went to daddys work and Abbey fed me a bottle. She did awsome. I enjoyed being able to meet some of the people at daddys work because they have done so much for our family. Sleep tight everybody, Ill be thinking about you when I am up at 12, 2, 4, 6, and 8 oclock tonight.
Tuesday June 6, 2006 Its been a string of pretty good days. The only issue I am having is that my weight is not rising as fast as we want. I only gained one ounce from Tuesday of last week to Friday. But as least I did not loose weight. This weekend has been a great couple of days. I was able to see Abbey and Andy. They came up to Grandma and Grandpa Aders to eat dinner! Then they hung around to watch me get a bath. On Saturday cousin Issak, Scott, Tracy, Marki, and Dan all came to see me. Marki was able to feed me. And I played with cousin Issak for a while. We have some great pictures that hopefully will find their way on to the website. I have some very exciting news regarding Aunt Teya. She found out Monday that she is dialated to a three and seventy percent efaced! I don't know what all that means, but mommy said it means cousin Troy is going to be here soon! I have been very excited for that. However I am disappointed that now Aunt Teya wont have that amazing belly to lay on. I love resting on her because the shape of her belly lets me sit on her and my enalarged spleen and liver have a nice little space to be without feeling any pressure! Oh well, it will be worth it to have cousin Troy here. Daddy cant seem to keep himself healthy for a long period of time. He is again sick so I havent seen him for about 3 days. Oh yes and more good news is my picc line is out!
Tuesday June 6, 2006 Later on today I went in to see Dr. Havlik. I have been having some problems holding my food down for some time now. Mommy and Daddy are worried I am starting to get sicker. However I have gained weight. I am now 8 lbs 5 ounces! I haven't been able to see Daddy in more than four days. He is really missing me right now, and I am missing him. I sure hope he can get better soon. I am really looking forward to our early morning talks on Utah football.
Friday June 9, 2006 We went in to see Dr. Havlik this morning. We met up with daddy and he was able to put on a mask and talk to me for a while. I wasn't in a very good mood though because at Dr. Havliks office I recieved my immunizations. However I did move up to 8 lbs 8 ounces! That is one ounce a day. Not too shabby if I do say so myself. Tonight if I am feeling better I am going to pack mommy, grandma Dawny and all their stuff up and head down to grandma Roses house to work on lil cousin Troy 's room. It is soooo cute! Aunt Teya hasn't been allowed to see it because we want it to be finished before she is able to see it. I just want to remind you that my treatment section is being updated regularly especially the weight/labs link. I am hoping to soon get some pictures of Dr. Havlik, Dr. Book, and Dr. Meyers up. Today Dr. Havlik held me and shook his head and said "well Jada, it sure doesnt look like your getting any less cuter"...he loves me.
Tuesday June 13, 2006 Because I was gaining so much weight Dr. Havlik said I only need to see him once a week. Dad is finally over his sickness, so he spends every minute he can with me. Tomorrow he and I are going on an outing to Grandma Rose's house to spend the day so Grandma Dawny and Mommy can go run some errands. We will probably be there from 9:00 am until sometime in the evening. Tonight Daddy and I are going to watch game three of the finals. Its pretty cool because two Utes are playing on both teams. The NBA is kind of lame but what else are we going to watch? World Cup Soccer? The USA stinks! Daddy says its because all our "real athletes" are playing football or basketball. Mommy gets mad at him when he says that kind of stuff. I just laugh because I know Daddys right. Go UTES!
Tuesday June 20, 2006 The last week has been pretty uneventful. I have taken several visits to Grandma Roses house. I am catching on to the art of smiling, and have some pictures to prove it. Be sure to look at some of my photo's. Tomorrow I am going to have my next weight checked. You can look at my progress on my TX section under weight and labs. Last week I had some labs done, and everything was elevated. Daddy will update that as soon as he can. Lately I am having a little more discomfort. I am going to go in and get checked for ascites, it is related to the liver having a build up of scar tissue and the difficulty that creates for the blood to flow through it--the back up results in increased pressure and fluid tends to seep through the cells and collects around the liver instead. .
Saturday June 24, 2006 My weight has gone up to 8lbs 13 ounces. I am spending alot of time with both grandmas and loving every minute of it! This Sunday mommy, daddy and I are going to meet a little girl who lives in a nearbye town. This little girl is 4 years old and had a liver transplant when she was 6 months old. We are so excited to hear their story and meet this wonderful family who we have so much in common with.
Friday July 7, 2006 Wow it has just been way too long since I last checked in. Well to sum it up if it were not for mommy I would probably be in the hospital. Diligence, strength, and desire to keep me healthy with watching me constantly by taking my temperature 8 to 9 times a day is keeping me on top of my health. However, I am starting to get pretty sick. My liver enzymes are going down, and normally that would be good but it means my liver is finally failing. my weight is 9 lbs 6.8 ounces! I am still gaining weight! My ammonia levels went way up, but that was because my formula was just too darn fatty. I met Annie ( the four year old who had a liver transplant. She was such a good little buddy to me. Mommy and daddy learned so much from that visit. The most important thing was that I could have a normal life! Once this thing happens, life will be hard for a while, but in the long run kids actually do pretty well. This summer Annie was given the green light to go swimming! I am making regular trips to the doctors office to get check ups. My labs are all over the place. But most importantly, I can still charm the pants off people with my huge toothless smile! Cousin Troy Danny was born on July 3rd. He weighs 7 lbs 13 ounces... whew, I was worried he might be born bigger than me! But... I WIN!
Wednesday July 12, 2006 It is eleven o'clock on Wednesday night. This is actually Troy ( Jada's Dad) writing this time. Over the last two days Jada has been eating less and less. It appears we have turned a corner and are letting up on the break so as to gain speed for this portion of the race. She was supposed to be eating 18 ounces per day. We are barely getting 13.5. Dr. Book is out of town, so Dr. Guthrie is in charge for now. He told us to check Jada in today so we could get a feeding tube in her…Tonight I stood at the foot of my little girls bed and watched her in agony as they pushed a tube past her sinus and down into her tummy. For the first time she looked strait at me and literally reached out for me. I felt so utterly helpless. The pain was so great that I had to leave the room and gain some composure. All the while my SUPER HERO Andrea stayed strong and focused and got her through the ordeal. Those of you who read this need to know what an unbelievable thing I witnessed tonight. The spirit and body weighing no more than 9 pounds exhibited more raw strength, courage, and patience than any being I have personally witnessed. Andrea makes no secret of how much I wanted a boy, I wanted a strong linebacker who would show his siblings how to be a strong Chilton. I got a smaller than average little girl who is showing her parents, grandparents and all their siblings how to be a strong Chilton. In my years of playing football, and coaching football I have never seen such a desire to win. Jada Rose is doing this thing her own way, and she's giving us a clinic on how to deal with excruciating pain and mind over matter strength. Those of you who are thinking of Jada Rose on a daily basis, rest assured if this thing is up to her, she will settle for nothing short of eminent victory. I honestly don't understand what goes into making such a spirit. What gives it this strength? Is it her Grandpa Mark? Grandma Bloom? Grandma Rosalie? Grandpa Daniel Webster? Or was it her strength that was manifested in their lives? I honestly am not bragging about myself. I don't posses the strength that Jada Rose has. Her mother, I do brag about. Every doctor walks into the room, and sees her medication charts, each professionally done and marked to the quarter hour with each cc of medication. They leave offering her a job, and shaking their head in disbelief. At this moment Andrea is at the hospital and is finishing a very hard day with her Rose comfortably sleeping in her arms. Andrea and I knew this girl needed to be named Rose. Her Grandmother has faith, honor, and courage that inspire all that know her. Her grandmother Rosalie captured the hearts of each person she met with pure love, empathy, and big big hugs. But tonight I see why she has that name. A rose doesn't die unless it is cut from its home. Its beauty is blinding, while mysteriously allowing the other flowers to be enhanced with their own beauty. Roses are absolutely breathtaking, and stunning. Their petals are as silk and even water itself appears to separate and fall off rather than attempt to blend in with it. And the thorns, ahhh the thorns. Is it true every rose has its thorn? Yes, but those who love and care for her, know her well enough not to let the thorns hurt them. To the Rose the thorns are a statement “ I will never give up, you will give up before I will. Not only am I protected by my thorns, those who surround me also have thorns who will protect me. I may take a nap, but I will always wake up bigger and brighter than before." As the father of Jada Rose I often look into her eyes and pray that she is proud of me? What a blessing it is to be in the presence of perfection, to be offered perfect love. Thank you for choosing us Jada Rose! We will fight for you with all we have. You will win this battle.
Thursday July 13, 2006 Well thats the last time I am going to let daddy write in my journal for me. Waaaaaayy too mushy! Today I was in quite a bit of pain. Mommy slept at the hospital with me, and she is doing the same tonight. Grandma Dawny and Grandpa Nolan came up to see me from 5:00 until 10:30 ! I sure love Grandma Dawnys snuggles. They are a little bit of heaven! My feeding tube is going to remain in. Tonight Mommy had to show the nurses that she could take out the tube and reinsert it. I was pretty upset with the whole ordeal, but mommy did a great job and was sure to snuggle me extra tight when it was done. I am feeding from the tube during the hours of 9 pm. to 9 am . Some good news is that my weight has gone up to 9 lbs 4 ounces! Also my tummy girth has dropped a little from 44 to 42. Today I am officially on the liver transplant list. Tomorrow morning mommy and grandma Dawny are getting the pager. Daddy had to give all the numbers of close family and friends who might be able to locate us in case the liver comes and mommy and daddy don't get the page. Those of you who know my mommy know that will never happen, but we gave the names to them anyways. Daddy says he is still awe stricken by how strong I am. When I get a prick in the heel, or when they draw my blood, I seldom cry any more. Now don't get me wrong, I howl when the feeding tube goes in, but you would too! My PELD score is starting at 16. However it is expected to be up quite a bit by my next lab. Grandma Rose stopped in and gave me some snuggles tonight. I can tell she worries about me, but I need her to keep up on her schoolwork so she can make more money to put in a special pool that is clean enough to handle my immuno-issues. I should be going home to Grandma and Grandpa Aders tomorrow some time. Then it looks like I am going to be at Grandma Roses on Sunday and Monday. I would love some non sick visitors to come and see me. Just to warn you I have a little noodle sized tube coming out of my nose now, but don't worry, I'm used to it and it doesn't hurt as long as people leave it in there. Good night all, I appreciate all your thoughts and prayers.
Sunday July 16, 2006 Due to the amount of action this last week, mommy and daddy decided to just stay up at Grandma and Grandpa Aders this weekend. I was completly distraught, and expressed it with full amplitude! You see Grandma and Grandpa Aders went out of town, and I wanted to go be with grandma Rose and cousin Troy ! I am recieving regular doses of codeine. My feeding tube is working well. And the good news is I am still feeding from the bottle during the day. Last night I was keeping daddy up and he decided to write Coach Whittingham a letter. He posted it on Utefans.net. There are some amazing people on there, and their responses to it were very heartwarming. Check it out. http://www.utefans.net/message.php?id=360180
Monday July 31, 2006
Daddy has been such a slacker in keeping up with my journal. We are in some tough waters right now. Due to my bilirubin being excreted through my sweat glands I am itching like CRAZY! I have some sores on my lil face from scratching so much! I am also in a great deal of pain. I am admitted to the hospital. They give me codeine every 4 hours. I love my meds! I've turned into an addict of sorts. Every time I see anything that remotely looks like a syringe, I grab it and start sucking on it to bleed any drug I can out of it! Plans have started to change. Apparently the doctors think I may be up to my fighting weight, and will need to get moving on some heavy duty treatment. Good news is the doctors have approved me for a possible live donor. Tomorrow some of my family will start being worked up for a possible liver transplant. Mommy and Daddy are first in line then Aunt Loni, and from there the list goes on and on. Tuesday August 1, 2006 I am still up at the hospital, up until now mommy and daddy have been only giving me .5 mm of codeine, now they are giving me 1 mm. This is the maximum dose allowed by Dr. Book. Tomorrow mommy will be getting some work done to see if she is the best candidate to give me a piece of her liver. Today Teya, Sean, and Troy Danny came in to the hospital to see me. I loved seeing them! Also Angel came by to see me. Angel is representative of her name as I am to a Rose! Mommy and Daddy said she is the only angel I am allowed to spend any prolonged period of time with. She volunteered along with Megan Christensen Webb to give me a liver as well. They are wonderful friends, who have helped us out a lot. Hopefully I may come home tomorrow. They started to give me Phenobarbital to assist with my itching. There were several hours today that I was able to relax and get some sleep. Fortunately I woke up in time to watch King of the Hill and Simpson's with daddy. Daddy went and worked on my Ute room. We are pretty excited to spend some time in there! His goal is to finish it by the time he is back in school. Daddy was accepted to the MSW 2 year program at the University of Utah . Good Luck dad, you've got your work cut out for you!!!
Wednesday August 2, 2006
I am now home from the hospital and sleeping well. Mommy still has more tests to see if she can be a donor, but so far all seems to be a go. they have taken my pain meds up, and it seems as though my itching is not as bad. Daddy cut his finger today, and has it in a splint so he isnt able to type as much. Sorry.
Friday August 11, 2006
Well I am stable, however my tummy is getting very swollen. It is usually 42-43 cm, it is now 47- 48. This ascites could create an infection, so they are putting me on a diuretict . Also today I am being admitted to the hospital so they can keep a sharp eye on me. I am still able to crack out a smile, and love the time I spend with grandma, mommy and daddy. Mommy is going to stay up here with me to keep me company. My liver news is a little grim right now because they dont know if my portal vein is large enough for me to have a live transplant. They have also made it quite clear that a liver that is small enough and with my blood type is going to be rare right now. My peld score is sitting at 10. This isn't good enough to get a liver right now. Any prayers would be appreciated. Monday August 14, 2006 I am home from the hospital! Yesterday afternoon I got home and it was sure nice to be back at Grandma Aders. Last night I slept the entire night! Mommy is a little worried because I have never done that. She is going to watch me to make sure I am not getting too lethargic. I hear Grandma Rose is home from Lake Powell , hopefully I will get a chance to see her soon. We went to Dr. Book today to make sure my ammonia levels werent out of range. They were ok, so they are taking me down on some of my medications that make me tired. Dr. Book also said that more importantly than my PELD is the goal to get my weight up! I have dropped down to 9 lbs 7 ounces. They have increased my fat intake quite a bit. This is probably going to be hard on my little belly. If this doesnt work we may need to go to more extreme measures, such as TPN's.
Wednesday August 23, 2006 Today Mommy and I went up to the Universty of Utah to get some work ups done for live donor. We are going to continue to move forward, however, the liver clinic did ask for daddys information for a live donor and requested that all those who are interested in being a live donor please call the liver clinic again. If you know your blood type, they will need that information. Tomorrow Aunt Loni is going to have a CT scan to see if she may also be a candidate. Daddy started school today and is pretty tired. He can only write my journal from our home, and I am staying at Grandma and Grandpa Aders, so I have requested that he make this entry short and sweet so he can get up to play with me as we miss eachother ALOT! As a side note, I would also like to congratulate Brett Ratliff for making the starting quarterback position for the Utes. Lets beat those Bruins next week Brett!
Tuesday August 29, 2006
AHHHHhhhhhh the simple joys of life! Notice my complete jubiliation! Yesterday I experienced my first Astro Bar. I am teething, and those astro bars certainly help ease the pain. They are goooood! My tummy is enlarged to 48 and 1/2 cm. I may be getting admitted in the next few days. The feeling my family gets from the doctors is that I am on the home stretch. Daddy is currently looking for a job, so he is pretty stressed about that. He continues with school, and seeing me every night gets him through some long hard days. Mommy and grandma are exhausted! I am a 26 hour a day job (They say I am worth every minute! ). So basically our whole family is in need of some prayers leading to blessings. Grandma Rose came up and spent Saturday with me so Grandma Dawny could get some much needed work done. What a fun day! She took me for a hike in the neighborhood on a front pack that Rob and Angel gave me. On the way back I was so tuckered, I fell asleep. She said one day I will be able to climb Mount Timpanogus with her. Love to all, and thank you for your prayers and support.
Wednesday August 30, 2006 I have been admitted to the hospital. The doctors say this one is long term. Basically the only way I'm getting out now is with a new liver. Aunt Loni is the front runner in the live donor area, but we are still praying for a cadaveric donor. Mommy doesnt leave the hospital so some healthy visitors would be wonderful! Daddy has found employment, and can also remain in school! Saturday is a big day for our Utes, and assuming I am doing ok at the hospital Daddy is going to have some friends to break in the "Ute Room". Uncle Greg came all the way from the Carribean Islands to see me and I am loving every minute that I spend with him. Grandma Dawny spends the majority of the day with mommy and I. And Grandma Rose is going to visit tomorrow. Wait until I tell her its ok for us to go on small hikes around the hospital! They put me in a little cart and wheel my I.V. along side me. I smile at strangers, and keep a watchful eye out for my hospital buddy Uncle Brent. Daddy does wheelies with me in the hallway and mommy shakes her head. I'm finding ways to have fun. Hope to see some of you. Keep those prayers comming. Thanks
Friday September 1, 2006
I am still in the hospital. Mommy and I are living here. I get wonderful visits from Grandma and Grandpa Aders all the time. Grandma Rose comes by when she can pull away from studies, work, and watching Troy Danny. Yesterday they took 200 cc's of fluid from my belly. It was nice to get some relief. My belly went down to about 46 cm. However, this evening my belly is starting to go up. They are watching for some signs that things are getting much worse. Bleeding, and/or breathing. I love to be held, and that is pretty much the only real relief that I get. Last night the wonderful nurses watched me for about seven hours while mommy got some much needed sleep. Tomorrow I will be excited for daddy to come up to the hospital and tell me that the Utes have won! The Remainder of this journal is updates written by Troy Chilton (Jada Rose's Dad) Sunday September 3, 2006 11:53 am
Jada has been in PCMC for the past week--we knew she wouldn't be released unless a liver became available for her....Just got word this morning about 9:45 am that a liver is available. The surgical team has gone to obtain it and Jada will have surgery sometime later today. Please pray for her and her parents and the surgical team. Thanks to all!! Rose Sunday September 3, 2006 3:56 pm
Jada's surgery has been scheduled to begin at midnight tonight (sept 4th). It happens to be Andrea's birthday. We will be updating this site throughout the surgery as updates become available.
Sunday September 3, 2006 5:35 pm
Things are going fine for Jada. Thanks for all the prayers and supportive phone calls.... Rose and family Sunday September 3, 2006 10:33 pm
Jada's surgery has been bumped to 4 AM but all is still good to go. Monday September 4, 2006 - Day1 1:38 am
Surgeons are excited about the new liver with visualization. Surgery now planned for 3:30 am. Monday September 4, 2006 - Day1 4:34 am
She just went in about two hours to prep and expect actual transplant to start in. Mom and Dad doing ok.
Monday September 4, 2006 - Day1 8:24 am
Old liver is out. New liver is ready to go in. Everything is going well so far. Monday September 4, 2006 - Day1 10:16 am
New liver is in and perfusing beautifully! Just hepatic artery and bile duct left to connect. All vital signs are stable. We are so grateful for all the prayers and support.
(perfusion is the process of nutritive delivery of arterial blood to a capillary bed in the biological tissue.) Monday September 4, 2006 - Day1 11:05 am
Hepatic artery flowing. All vital signs stable. Bile duct next then an ultrasound to look for leaks. Everything continues forward without setbacks :) Monday September 4, 2006 - Day1 11:56 am
Just spoke with surgeons. They have completed the transplant and Jada Rose is stable. Bile is flowing. Ultrasound is being done right now and then she will be released to the PICU. We are so grateful for all the prayers. Please remember our donor family in your prayers. Monday September 4, 2006 - Day1 11:58 am
The surgeons let us see the old liver. It was very hard and green. Surgeons are so pleased... We love to keep surgeons happy :)
Monday September 4, 2006 - Day1 1:55 pm
Troy and Andrea were able to go see Jada in the PICU at 1:30--we haven't heard from or seen them since.....
Monday September 4, 2006 - Day1 6:15 pm
Jada is doing ok, her pain is borderline out of control. It takes two to three people to hold her down right now because she is so strong, and so upset! We have given her allot of fentanyl and now we are trying versed. She is calming down for 10-15 minutes, then decides its time to wrestle. How someone is strong enough to arch her back, and flail around when her connecting tummy tissue is severed is beyond us? Her eyes are still dilated and her blood pressure is borderline too low, so we are being very weary of giving her too much sedative. Still no bleed outs, and dang those toes and fingers are looking pretty dang pink!
Monday September 4, 2006 - Day1 9:53 pm
The Gastroenterologist examined Jada this evening and could not be more pleased with the results. Lab work looks good. Jada is still quite uncomfortable but seems to be doing better. We are all looking forward to a good nights rest. Thanks so much for everyone's continued support and prayers.
Tuesday September 5, 2006 - Day 2 9:59 am
No update yet this morning. Troy and Andrea are on there way to Jada's room and will have updates shortly.
Tuesday September 5, 2006 - Day 2 4:45 pm
All pretty quiet today. All physicians very pleased with Jada's recovery. We are keeping her relatively sedated to keep her calm. When she is awake she is too intent on rearranging her gear! Jada's color is looking absolutely great!
Tuesday September 5, 2006 - Day 2 5:34 pm
Jada is opening her eyes and looking around...WHITE EYES!!!!!!!!!!! AMAZING!! She wakes up for about 5 minutes every hour or so. They are giving her Lasix to kick-start her kidneys. All her other labs are wonderful. Many nurses, nurses aids, and phlebotomists are stopping by to "see how their sweet Jada Rose is doing". We have to keep tissues close by to catch all the tears of joy! They have pinned her arms to the side to prevent her from pulling the intubator (breathing tube) out. Speaking of intubation, she is getting extubated tomorrow morning to mid afternoon. However, when she is sleeping she sucks on the intubator (kind of cute). She is still getting regular doses of Fentanyl for pain. Dr. Sorenson the main surgeon came in and told us that there is not a single thing about her recovery that is less than his best expectations. Also they are weaning the ventilator through the night and hope to be able to have it out in the morning....And did we mention her eyes are WHITE?!!!
Tuesday September 5, 2006 - Day 2 10:59 pm
Jada was taken off of her Lasix medication due to too much . Doctors are also reducing the pain medication. Jada woke up to watch the Simpson's tonight at 10:00 pm but was quickly back to sleep by the time Seinfeld came on. Labs continue to be normal.
Wednesday September 6, 2006 - Day 3 12:03 am
Jada is scheduled to be extabated in the morning. She is waking up every hour or so and tries to cry but no noise comes out. It breaks your heart and all you can do is try to comfort her by rubbing her head and whispering in her ear. She looks around so confused. Those eyes are so descriptive they speak a thousand words. Aside of the pain which we know she will forget she is doing wonderful. So good in fact that she is only having her labs checked twice a day. Her kidneys are still puttering a bit. Her mommy is such a comfort, and because of some amazing friends (Megan and Tyler Webb and Rob and Angel Christensen) she is able to stay at a Hotel just one block away. We love you all and know many are checking the site often so we will do better at getting the updates placed closer together.
Thursday September 7, 2006 - Day 4 9:49 am
Jada had a great night with lots of rest. She awoke this morning and smiled at the nurse! She should be extabated later this morning.
Thursday September 7, 2006 - Day 4 6:23 pm
Jada is doing great! Her breathing tube has been removed and her color is great! Her labs continue to fall into normal range and her bilirubin count is down to 3.0. Jada is in allot of discomfort with a sore throat and cough as a result of the breathing machine.
Thursday September 7, 2006 - Day 4 11:27 pm
Jada had her NG Tube taken out of her nose as well today. Her surgeon said to take the NG out after he saw her progress and was extremely happy with it. She is so much happier with those out, but still in a lot of pain. Jada is still getting big doses of pain medication for her discomfort. She gave her nurse Susan a big smile this morning even with the breathing tube in. Look forward to some pictures with her cute face absent of any tubes or tape. We are down to 5 pumps and 7 lines, the first day out of surgery we had 11 pumps and 10 lines...YEA!! She is coming through this with flying colors, mainly RED and WHITE!! Annie's mom came to visit Jada today and was so surprised to see her amazing progress, and Trudy is an expert as her daughter Annie is a 4 year old survivor of B.A. and had a transplant at 6 months old as well.
Friday September 8, 2006 - Day 5 1:20 pm
Jada is no longer in the PICU! She is now in the ICS. This is an area of the hospital reserved for children who have immunocompromised bodies. She seems > to be doing really good. She has a temp of 100 so they are watching that very close. Also she drained a little bit of blood. Nothing to be extremely alarmed about, but also is under close watch
Saturday September 9, 2006 - Day 6 8:30 am
Last night was rough. Jada has been throwing up through the night and getting very little sleep. The Doctors are doing tests to determine if there are any problems. She is also experiencing more bleeding at one of the drain sites than we want.
Saturday September 9, 2006 - Day 6 9:30 am
We have some of the labs back, and due to the amount of fluid she lost last night her red blood cell count is down quite a bit. We may need to give her a transfusion. We are trying to replenish her fluids as best as we can. She had a very difficult time coming of the Fentenyl. She is now on a regular drip of morphine. Because Jada now has a completely new filtering system her drug intake is a very delicate process. This means she needs to start very low on drugs like morphine to prevent respiratory complications. This is one big factor in why last night was so tough. Dad, Grandma Dawny, and Grandpa Nolan all spent the night with her. It was a very helpless night because there was simply very little we could do to comfort her. Grandpa Nolan rubbed her head for hours and hours, replacing a warm blanket every chance he could. Grandma Dawny and Dad did what they could around the bed to help. Mom was getting some MUCH needed rest at the Hotel so she could dedicate 100% to the day time tests ahead of them. Grandma Dawny took over around 5:00am. So Grandpa Nolan could run out and take care of some church obligations. Dad got a few hours sleep on the pull out chair, then Grandpa came back around 7:30ish. Jada's bili went back up to 3.3, but we knew it would do a little roller coaster action in the coming days. Keep those prayers coming, this portion of the adventure is getting pretty rough on Jada Rose and her family. Uncle Bob and Aunt Claire came up to see Jada and helped calm her down during the early evening hours. Russ and Gramma Rose joined the party some time later with some goodies. Jada also had to have a tube reinserted through her nose and into her tummy to help remove stomach bile that was causing allot of vomiting. Her tummy girth is down quite a bit, so that is one positive. And another is she seems to not be draining as much as earlier this morning.
Saturday September 9, 2006 - Day 6 10:00 pm
Jada is in the process of receiving a blood transfusion. This will hopefully help her feel better. The main reason is to get her hematacrit levels up, as they have dropped from 26 to 20 today. Uncle Roger from California came in to see her today. Tonight Gramma Rose is going to take the all night shift with her. Then tomorrow Angel Christensen, and Rob Christensen have volunteered to take the all night shift. Jada is starting to maintain a relatively calm state. She still has moments of pain but works through it ok. She is not her usual self yet. We are still looking for that wonderful smile that we miss so much.
Sunday September 10, 2006 - Day 7 9:00 am
Jada has received her blood transfusion and is doing better today. Gramma Rose spent the night with her and reported that she stayed calm for most of the night, getting some regular well needed sleep. Andrea woke up early and relieved Gramma Rose so she could go to church. Jada is having some very impressive diapers full of deep brown bile! Also her bili count dropped again to 2.8. Grandma Nolan and Grandma Dawny will be coming up this afternoon and hopefully will get some amazing pictures of a very pink baby! The pictures from days 5 and 6 should be up soon.
Sunday September 10, 2006 - Day 7 9:00 pm
Today Jada is doing much better. They have taken her NG tube out, so her face is tube free again! Today Jada gave her mommy a big smile around 10:00 am. And from then on she couldn't stop giving out smiles to everyone who visited her! She is now only receiving morphine as needed. She is still scheduled to have her tummy sewn up on Tuesday morning. Tonight Angel is watching Jada into the early morning, then Rob will relieve her. This is wonderful so that her mommy can get a good nights rest. Jada filled her diaper tonight without any help of a suppository. It was full of bile!!!
Monday September 11, 2006 - Day 8 5:00 pm
Jada is having a slightly more pain filled day than yesterday. Jada's nurse Joan felt like it would be best to put her back on a morphine drip. We agreed, and the doctors approved. Last night Jada had a wonderful evening with Rob and Angel, however when Mommy returned the next morning, she found that this sweet girls picture of her dressed in Ute gear was viciously vandalized by some zoob (byu fan). Someone thought it would be fun to leave a big blue Y on a picture that the nurses had posted of our little Ute dressed in Ute gear. Andrea knew exactly who it was that did this horrible deed, and it for sure wasnt any of her nurses, they can add, spell, and cross the street. It wasn't Angel, because well, Angel is an Angel. IT WAS ROB!!! Rob, we are trying to keep her from throwing up, and that isn't helping :) Seriously: Thanks Christensen's for your help, You are Wonderful! Today Daddy signed the "consent to treat" that will allow the surgeons to sew up Jada's tummy tomorrow, so keep her in your thoughts and prayers!
Tuesday September 12, 2006 - Day 9 3:30 pm
Jada is preparing to return to the O. R. She is doing fantastic! She is laughing, playing, and smiling every moment she can get. She is still taking pain med's (morphine), but doesn't appear to be groggy from it. She does have some itching that is associated with the morphine. She may enter the O. R. any minute/hour. Once in, it is anticipated that the operation will take about one hour. However we must give the surgeons a little extra time to admire their work, and throw around some high fives. It is not known if she will return to the PICU. Due to her immune system being attacked they would like for her to return to the ICS floor. If her health is ok, this is what will happen. We are also hoping that she will be ext abated upon completion of the operation. Again, this is dependant on how well she does in the O. R. We will keep regular updates throughout the evening.
Tuesday September 12, 2006 - Day 9 9:30 pm
Jada is sleeping in her room. She has some battles with pain, but looks absolutely amazing! Her tummy is looking so good now that it is put back together. Her abdomen actually fits her body now! Mommy is sleeping in the room with Jada tonight, as she did last night. We are hoping she will quickly return to her playfully self soon. Visitors are welcome if and only if they are very very healthy. Meaning that they have not been sick, or been around anyone sick in the last ten days. Jada is on a medication called Pro graf. This is a immune suppressor. Its purpose is to prevent her body from recognizing the new liver as a disease and attacking it. We are trying to get the perfect dose, and we are missing the mark, one day it is too much, the next it is too little. Right now it is too much, so they are skipping her dose today and giving one tomorrow morning. With this drug we must be very carefully because even a small sniffle of a cold or sinus infection could put her little body into an all out war zone! So at this time, we are asking all of you to be very carefully. If you are planning on seeing Jada Rose in the near future, or are a close friend or family, and know you will be seeing her frequently, there are some protective measures that you can take. When in the office, at work, school, or anywhere else that there might be colds running around, have a bottle of Purell, and squirt some on your hands every so often. If someone around you is sick be especially cautious! We also would ask that right now and for the next little while small children not be around Jada Rose. We know this is hard, but also know you understand. If you think you have it bad, there are two golden retrievers at home who used to sleep on the bed with mommy and daddy, as well as roaming wherever they wanted. Big changes await those poor souls!
As things progress, the light at the end of the tunnel gets closer and closer. We have not lived in our house for over 5 months! We are now preparing to go back! Our house is indesperate need of major cleansing! We are having our floors re-done, then will clean, bug bomb, re-clean, and disinfect the entire house making it ready for an immune compromised baby to live there. We have had some volunteers to help, and are willing to take more. Anyone who is interested in joining Loni-Kat, Teya, Gramma Rose, and Grandma Dawny, please let us know.
Wednesday September 13, 2006 - Day 10 9:30 am
A very tough night! Jada was in allot of pain, she is doing ok otherwise, but her body is just saying "enough is enough". This morning they are working on getting her pain under control. Her labs look un-believable! Her total bilirubin is down to .8! The doctors are extremely pleased. There are even some small rumblings of perhaps Jada going home some time next week...remember those are just rumblings, no one has actually said that but it appears as though its there as a chance.
Wednesday September 13, 2006 - Day 10 8:20 pm
Jada's body is still pretty upset with us for putting her through more trauma! She is having a hard time keeping that blood pressure down. They did medicate her for that. Her surgeon came in tonight and said this is all expected, and that she is still doing well. Her hernia re-surfaced today from all her straining. And when she breaths, she makes a grunting sound that is her lungs trying to get a little more oxygen in. We are looking forward to tomorrow in hopes that she will feel better. Usually after three days Jada is back to her usual self. Give some extra prayers to Jada's Mommy, as she is putting in some long days and nights comforting her. Her Prograf levels are near perfect now. All chances and signs point to discharge next week!
Thursday September 14, 2006 - Day 11 8:20 am
Jada had a pretty hard night. Her heart rate is not calming down, and they are worried that if her current heart rate stays the same it could cause a heart attack. She has been taken for chest x-rays, and the nurses are consulting with the surgical team as well as the GI team. We will keep this site updated as info becomes available. Please pray right now, we are starting to get worried.
Thursday September 14, 2006 - Day 11 1:12 pm Jada's Blood pressure is is good and her oxygen intake is good. The Doctors are confident the problem will be helped by tonight. They are also trying to get her bowels functioning. The Morphine has stopped their functioning for now. The Doctors are emptying Jada's tummy in hopes of reducing the stress that her heart is taking right now. We are thankful that she is in such good shape going into this.
Thursday September 14, 2006 - Day 11 6:43 pm What a champ! Jada is smiling this evening and even giggling. Her heart rate has dropped. The Doctors used a NG (Nasogastric tube) to remove the contents of her stomach and used an enema to provide some much needed comfort. It seems to have worked! Jada has had her Morphine does reduced as well. Thanks for the prayers!
Thursday September 14, 2006 - Day 11 9:23 pm Jada is spending the night with her Grandma Dawny! She was sure happy to see her. She is remaining calm. She is also throwing occasional smiles at anyone who walks through the door. Her heart rate goes up slightly as pain increases, but not causing near the worry that this morning was causing. They are giving us classes on how to deal with Jada's new liver and, meds. She is on a sterroid called prednisone, this one we are hoping to reduce the dose, or even stop. This one has side effects such as immune deficiency, decreased growth, decreased bone strength, acne. Short term it is very good for what we need! But one that needs to be tapered. Tomorrow's class will be on signs and symptoms of rejection, things to avoid etc. We will share these day to day practicalities with you as we recieve them.
Friday September 15, 2006 - Day 12 8:23 am Jada needs to have Grandma Dawny spend more nights, because she had an absolutely fantastic night! She slept the whole night through! In fact at one point her machines went off because she was so relaxed that they had to place a little oxygen mask by her bed! This is a good thing! She is so tired her little body finally said "I have to sleep". Also she had a nice size bowel movement ALL ON HER OWN! Good job Jada Rose! You deserve some relaxation! Also good job Grandma Dawny!
Friday September 15, 2006 - Day 12 5:00 pm Jada continues to have a good day. It appears that the doctors have her dialed in pretty well witht he adequate amount of pain meds. She is laughing, and smiling! She is also able to sit in our laps! As the current situation presents itself she will start drinking clear liquids at the end of the weekend or beginning of next week. Jada is enjoying watching tv, and reading books. She is turning her own pages! It is kind of hard for her because she once had such smooth muscle control, but the current medication makes her a little more jittery. She handles it like a true Ute and adapts. How could we expect anything less from this miracle?
Friday September 15, 2006 - Day 12 10:00 pm Jada had a very good day. She is doing alot of sleeping! Andrea is going to spend the night, and hopefully have the same outcome as Grandma Dawny did last night. Jada has had several good bowel movements. She seems to be avoiding "the dehydration". Hopefully tomorrow will bring another good day. Tomorrow Jada's uncles are going to help her Daddy, and a family friend re-do their wood floors in preparation for Jada's home comming!
Saturday September 16, 2006 - Day 13 3:00 pm Jada is eating! Well actually drinking. She has had her pedialyte and it seems to have agreed with her! She is now approved for FORMULA!! We will start that tonight or tomorrow morning. She is doing fantastic! No apparent signs of rejection, sleeping for good periods of time, and happy, happy, happy! She will be alot more happy if the Utes ride out of Logan with a big score! Sorry for the late update, the next one will bi in 2-3 hours.
Saturday September 16, 2006 - Day 13 9:45 pm
Jada had a little bit of fluid built up in her belly. Sometime this evening the incision inside of her muscle started to become agitated, and started to drain.. Its ok though, infact it actually released a little bit of pressure and after a little bit of pain Jada calmed down. EVERYTHING IS OK. Jada currently is very happy. We wanted to let her have some formula tonight, but due to the recent event, we are going to give it a few more hours. When Jada heard the Utes shut out the Aggies, and scored 48 points she nearly jumped out of her bed with excitement. That may have hurt her a little. But THEN when she found out the cougars lost...well she could barely contain herself! Perhaps we should leave Sports Center off while she is still in the hospital?
Sunday September 17, 2006 - Day 14 10:15 pm
Jada had a longer night last night. She did not really sleep much. And that means Mommy didn't sleep much also. She is doing well though, she is regularly eating formula now. We are starting her off with very little portions (10 cc's). Tonight she had all of her staples removed except 3 surrounding her drain. They did not feel so good comming out, but its a welcome step. Craigy came by to see her tonight and was able to hold her. His good friend 'Brit' is our nurse tonight. She started itching her wound so we now have her wearing a shirt (Jada, not the nurse). They gave her a blue one and she was not too pleased with that, so they went and found a cute pink one. She is into a laughing stage where if you sneak up on her and jump out with a big smile, she will just bust up laughing! The nurses came in and just enjoyed her laughing for several minutes tonight! Tomorrow they will take a look and see if the remaining staples should come out. Discharge should be sometime this week! Possibly Wed. but we will plan on the end of the week.
Monday September 18, 2006 - Day 15 11:55 pm
Jada is doing very well right now as you can see from day 15 pictures! Today, or rather tonight we were able to take our her JP drain. This is the drain that was draining all the gunk from her belly. It did not feel to good comming out. Imagine what it must feel like to have a tube the diameter of a power cord being remobed from your intestines. It was about 9 inches inside, and the end was larger than the actual tube! OUCH! It only took her about 10 minutes of real crying to calm down...This girl is so TOUGH! She was back to smiling and laughing after. They are significantly reducing her pain meds each day. And tomorrow (Tuesday) they will be reducing her TPN (nutrition IV) hopefully this will cause her to want more formula, as right now it takes alot of coaxing for her to pound 30cc's. Hopefully her Dad can get some of his school work done in time to get more updates on tomorrow! I'm sorry that Monday had none. But on the bright side there are some pretty cute pictures!
Tuesday September 19, 2006 - Day 16 11:45 am
Jada is not feeling so hot right now. Her tummy is experiencing some strain due either some gas bubbles, or her appendix. They are running some labs to see what could be causing the discomfort. They are actually going to go up on the TPNs. We recieved that order, and are wondering why? We have put out request to explain that and are waiting for a reply. It looks like they will probably start using Methadone to taper her off the narcodics that she has grown so accustomed to over that last two weeks. Overall she still looks good, and is doing good. Just some small things to sort out.
Tuesday September 19, 2006 - Day 16 9:18 pm
Jada is having a good day thus far. Mom and Dad have been running errands trying to get the house ready for Jada to return home! They are saying she is comming home on Thursday or Friday. Tomorrow they are still planning on starting methadone.
Wednesday September 20, 2006 - Day 17 12:18 pm
Jada had a wonderful night! She drank a whole bottle! And today is continuing to put down formula at the same rate! They weighed her and she was over 11 pounds! This is wonderful because that is true weight. Befor she was being weighed and she was retaining alot of water due to the failing liver. This is true lean weight! When Dad left the house this morning, there was literally an army of ANGELS cleaning our house head to toe, disinfecting walls, ceilings, counters etc. Thank you so much ladies! (The LDS Crestwood Ward Relief Society all came over and cleaned in preperation to our baby comming home in the next two days.) We have cleared all bedding, towells and laundry from the house to be cleaned. Jada was talking, giggling, and laughing all morning as reported by Grandma Dawny.
Wednesday September 20, 2006 - Day 17 6:18 pm
Jada is now completly off Morphine, she is on oxy codone. This is a temporary step off of morphine. She has had several bottles of formula today, and is eating better than expected or required. She does have a NG tube in (a feeding tube) so she can recieve some nasty tasting meds when she comes home. We are being told that she will not be ready to come home tomorrow (thurs), but will shoot for friday. Even that they say can be changed based on how she reacts to pain meds, and future feedings. Our house is clean and ready for our family to live in! Thanks ladies!
Thursday September 21, 2006 - Day 18 6:18 pm
Just some small very very minor setbacks today, you could really not even call them setbacks. Jada is slowing down on her eating a bit. They are going to try and reduce her TPN in hopes of giving her more of an appetite. She does have an NG tube in, and they have given her some feedings through that. So she is still getting the nourishment she needs, just not in the most desired way. All other signs are looking good as far as labs, color, urine output, and of course stool. Her release date is more firmly set, but not until Monday. Thats ok, as stated earlier, this is not really a setback, because more observation in a hospital is a good thing. The further along we can get with no rejecticn, the better, and for that to take place in a sterrile environment, is good. We are doing a better job at keeping her photo's updated, so be sure to enjoy them. Notice the "pudge" she is putting on! As she smiles her cheeks are being pushed up into her eyes like a lil fat baby! Also notice her skinny legs are starting to put more weight on as well! We want this kid FAT! We hope that in the near future she will need to wear glasses with no prescription lenses, using the frames to keep her cheeks out of her eyes!
Friday September 22, 2006 - Day 19 12:18 pm
Jada is doing good she is eating ok, but not GREAT. This will take time. Last night she had a tough night sleeping. It will be nice to have her back home and on a "schedule". Some parents say that after taking their child home they sleep for a day or two strait, because they no longer have a nurse waking them up every two hours, or hear buttons, buzzers, or people talking. And then some say their children dont sleep well at all because they dont have the buttons, buzzers, or people talking. Jada is still filling her diapers regularly, and her labs all look like labs from a normal baby. We are also excited to see how fast she starts to grow. Because her absorption was not functioning well, she is basically a 7 month old baby trapped in a 1-2 month old body. You can tell she cant wait to start rolling around, crawling, and using this new found energy! When she is sitting on your lap and a nurse comes in to adjust, or start a med, she works every angle twisting her neck, tilting her head, and peering around to see what she can learn. We will try to keep the updates comming regularly. Dad is finishing school today, then starting a grave rotation, so the updates for the next 12 hours may be sparse. Tomorrow morning there will be an update. And if there is anything ground breaking Dad will text Russ and he will have it on. There should be some new photo's soon as well.
Friday September 22, 2006 - Day 19 8:00 pm
Well Jada WAS having a hard time eating, but seems to have pulled out of that phase for now! Today she has put down 42cc's, 45cc's, 47cc's, and most recently 60cc's! The 60'cc is especially important because she did it in under 10 minutes! Mom decided to take a reccomendation from Aunt Teya suggesting Enfamil because it has less bubbles. Good idea Aunt Teya! Mommy says her color looks amazing right now as well! They did give her a boost of steriods because one of her liver enzymes was a little elevated which can be an early sign of rejection, or a sickness. They did not seem too alarmed by it, but are taking precautions.
Sunday September 24, 2006 - Day 21 11:30 am
Rob and Angel watched Jada last night so Mommy could go get a full nights rest! Thanks so much Rob and Angel! Apparently Jada slept the whole night. She has been eating very well, and it would appear as though she is going home on Monday. Later this evening we should have some more details regarding the circumstances of I.V.'s N.G.'s and anything else she may or may not come home with. Aunt Teya wants us to clear up an issue. Some one thought it would be funny to do some "red reduction" on one of her pics on day 19! It was Russ! And Teya doesn own a blue sweatshirt, much less one tha thas the letters byu. She wants to make that clear. Russ did a great job, it looks legit. However, you can tell its fake, because Aunt Teya looks like she is happy, fulfilled, and content. Yet she is wearing a byu sweatshirt. That doesnt add up.. A long term smile on a coug is as common as wings on a pig...Good one Russ! :) Thanks again Rob and Angel!!!!!
Monday September 25, 2006 - Day 22 7:26 pm WE ARE HOME!!! WE ARE SITTING ON OUR OWN COUCH IN OUR OWN HOME WATCHING MONDAY NIGHT FOOTBALL!!!
Tuesday September 26, 2006 - Day 23 4:00 pm
Well Jada is finally home! She was up alot last night, but it was just nice to be in our own bed for the few hours we could sleep. She is doing wonderful! She is eating a TON! Daddy introduced her to her Ute Room that daddy built this summer in honor of Jada Rose and her endless courage to never give up, no matter how tough it gets. Ute fans know how to hang in there through the tough times. Check out this link to view these pictures and the link for 9/25 on left.
Wednesday September 27, 2006 - Day 24 5:00 pm
Jada is still doing awsome! She is giggling and laughing almost all the time! We are so happy to be home! Looks like it may be a while before she sleeps through the night. She does great once we get more food in her. She is eating about 3 ounces per feeding!
Friday September 29, 2006 - Day 26 5:00 pm
Jada is having a wonderful time being home! She is spending time reading books, playing with toys, and watching movies! Today her and mommy went for a walk. Several people have come by to see her. We love healthy visitors. Every other day home healthcare comes to take blood. Yesterday one of her levels were a little too high (prograf). They made an adjustment to her meds, and it is now looking good. Still not sleeping for very long periods of time, but that should come in time...we hope.
Sunday October 1, 2006 - Day 28 8:00 am
Each day that comes and goes, we see Jada Rose growing, and improving at an amazing rate! She now has two teeth peeking out from her bottom gums. Mommy has taught her to stand up. She has to lock her knees, and she is very VERY shaky! But when we consider that only a week ago she could not even roll over, her strength is inspiring. Mommy has figured out a few tricks to helping Jada sleep better through the night. She is eating around 5 ounces per feeding. Each feeding is about every 2 hours! We love to have visitors, but please do not come over if you are going to talk to Jada about the current state of her Ute's. Its just a little too painful right now.
Monday October 2, 2006 - Day 29 8:00 pm
Ok we have some news. We went to see the liver transplant team today for our weekly check up. Jada "looked great" to everybody. So after the appointment, Mom, Dad, and Jada drove over to the University Book store. When we arrived in the parking lot, we received a call from the liver clinic. We were told to go back, that a blood culture had come back positive for infection. CRAP! Apparently there is some fairly reliable signs of an infection in Jada's system. It could be something like strep, or it could be her picc line getting infected. Mom seems to think it is the picc line as it is a pretty short picc line. So here is what we do from here. We stayed at the hospital until about 7 ish getting infused with antibiotics. They took blood from her veins, and also from the picc line. They are running a culture to hopefully see that it was a mistake, that there was no infection, or a less desirable outcome that there is an infection brewing inside her and needs to be attacked with antibiotics. Or even a lesser desirable outcome is that her picc line has an infection in it. In this case we will need to be admitted into PCMC tomorrow. We will need to spend a few nights there as they remove the old picc line, administer IV antibiotics for a few days, re-insert a new picc line, then send us home for 11-14 more days of IV antibiotics. This is not catastrophic yet, but it is also not something we want. Its scary when her body is hit with an infection of any kind. She has had some coughing spells, and her temp is hovering around 99.5. However, on the positive side, she is still very happy, and does not act sick at all. She is eating like a horse! Also last night she slept through the night! So, we are going to really watch this next set of labs, and pray that it is not an infection, and if it is that it can be taken care of without harming Jada Rose.
Wednesday October 5, 2006 - Day 32 6:00 pm
Ok, now we have some GOOD news! All blood cultures came out negative for a blood infection! This means we will be staying home, and we will also be getting her picc line out! That is the last tube to be removed from her body! She is eating VERY WELL. She is also almost completely off heavy pain meds! Good Job Jada Rose!
Tuesday October 10, 2006
12:00 am
Jada is doing absolutely wonderful! Monday she had a check up and all labs look great, she has gained 8 ounces in one week, and has the pudge to show for it! Tonight she ate a bowl of cream of wheat chased by a bottle of formula. We are hoping that a more solid food will help her get a few more consecutive hours of sleep. The steroid she is on causes her to not sleep as well, and she will probably be on that for months to come...whew! She is standing up with assistance, and rolls over from her tummy to her back! We are so very happy for her progress. We pray things remain like this.
Wednesday October 11, 2006
3:37 pm
This picture pretty much sums it up! This was taken before mom and dad took jada for a walk. Actually mom went for a long walk, then when dad returned from school he joined them. Jada continues to be very healthy! Her levels are all doing great. She has been watched by both grandmothers. Tomorrow night Mom and Dad are going out on a DATE! We are hoping that one of the grandmothers will be able to watch Jada. We are getting Jada on to a schedule and it should hopefully pay dividends as far as parental sleep. Every night we give Jada a small bowl of hot cereal, she paints her face, head, chest, and arms with 90% of it and eats the other 10%. We will have pictures soon. Then we take her in for a bath where she thinks its absolutely hilarious to soak her mom and dad! She kicks water all over the place, and when mom and dad scream and jump out of the way, she laughs out loud in pure satisfaction! Last night she slept for about 4 hours!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We are trying to add music to her site, but it is a work in progress. So hopefully it wont put too many people out as we are figuring out how to do it. If anyone has any ideas as to what songs we could use, we are looking for ideas. We are working on having "butterfly kisses". Dad wants to play Utah Man, but realizes we need to be culturally competent. No Rob, "rise and shout" will not be used except for a page describing Jada's brown stinky poop. For those of you who don't know "rise and shout" is the byu fight song. They play it when they score...so that means Ute fans don't hear it very often.
Friday October 13, 2006
8:37 pm
All we have to update today is some really cute pictures! We wish we could tell you today is just an average day, but frankly we have no more average days! We have a miracle living amongst us, and it is inspiring, humbling, and illuminating! The problem is we cant explain our experience through the english language. How do we explain day in and day out the joy that we feel when she drains 6 ounces of formula from the bottle every 2 hours? I wish the internet was a safe enough place for us to put a video of her kicking and splashing in the bathtub, just so you could experience the sound of her laugh. A few days ago Jada and I were in the lab getting some blood drawn. Most of the phlebotomists know us, but this one did not. When she saw Jada laying down on the table and she saw that HUGE scar, the woman looked up and saw an ear to ear pink, grinning baby staring up at her. You know what she said? " looks like no two piece swimsuits for you sweetheart"...I (her daddy) just glared at the clueless lady. She just did not get it! The whole world can see this scar as far as were concerned, there will never be shame in it. It is the mark of a miracle. It represents gallons of tears, weeks of fight, days of prayer, and most of all, it represents a nameless family somewhere in a neighboring state, who had the presence of mind to give life to a family whom they have never met. Jada Rose will never be ashamed of that scar! Our joy is full because of it. We will continue to give updates, and they may sound redundant, and average if they were being written about a normal child. But we (most of you who check this site) have perspective, don't we? A man that I only know through UteFans emailed me today and said that every night he puts his four year old daughter to bed, and they pray for Jada Rose. I know there are many of you out there just like this man. Thank you for all of you who continue to let us become a part of your lives. Our Jada Rose lives because of your prayers, we know that. Keep checking back. Thank you all.
Wednesday October 18, 2006
6:00 am
We went to the doctors office on Monday. What a great visit! They changed her formula to one that contains less lactose as she is eating so much that perhaps the amount of lactose is bothering her tummy. They also changed the orders so we only have to get labs drawn once a week! Once a WEEK! WOW! And also, to add to that they told us that they did not need to see us for two weeks! TWO WEEKS! We have never gone that long without a Dr. appointment! Truely monumental! Andrea asked when she can go into public places, they laughed and said..."not yet". Still not sleeping, but we pretty much undertstand why, and if thats our biggest problem, then we have no problems.
Thursday October 20, 2006
11:59 pm
Jada is doing wonderfully! She is spending alot of time watching cartoons, reading books, and EATING! She is very active, and talks all day long! Her weight is now over 13 pounds! Here is a cute photo of her at her Grandam Aders house getting ready for some FOOOOOD!
Wednesday October 25, 2006
3:00 pm
We had Jada's labs done on Monday, and they are all perfect. In fact we are told that if a person were to look at her labs and judge her health, she would show no signs of a liver problem. This week we are going to try having her sleep in her own room! Its a huge step for us, but feel it may assist with her sleep habits, and free ups some space in mom and dads bedroom. Jada was going to get a flu shot this next week, but the transplant team feels it will be more effective if we hold off for a few weeks. We strongly encourage all family and friends who will be spending time around Jada, her parents, grandparents, and even aunts and uncles to get flu shots. Also to those who spend time around Jada remember that we are getting into cold and flu season, so be sure to limit contact with people who are sick, and wash hands regularly.
Friday October 27, 2006
11:00 am
Tomorrow may be a landmark day for Jada Rose!!! If the weather is good, and if she is still healthy, and if there are no apparent signs of illness amongst those participating, Jada Rose will be making her first appearance at a University of Utah Tailgate !!!!!! We honestly did not count on this possibility until next year. If any of you are interested in seeing or meeting Jada please be sure that you are absolutely healthy, and that you have not been around anyone who is sick. If so, just maintain a safe distance from her. We are hoping that everything continues to work out in favor of this ! Hopefully having a living breathing miracle present on the campus during game day will help put some lost magic back into our struggling Utes! The link below will take you to our location of our tailgating festivities.
Wednesday November 1, 2006
12:00 am
We went to see Dr Book this week and Jada Rose is on a strait line headed for the growth chart! We are not there yet. Dr Book said we will not need to see her for ONE MONTH!!!! Wooooohooooo!! Next thing we know, it will be two months, then three months...etc At the end of the appointments Dr Book always ends the examination, then says goodbye. Then she verbally puts her notes onto a voice recorder. It is always interesting to listen to her notes. This time Andrea and I were listening in on her and we heard her say "Jada is excellent condition, is alert, and chubby..." I leaned over to Andrea while we were changing Jada's diaper and I said "she just called our baby CHUBBY!" Andrea could hardly contain herself. We just sat there and grinned at each other. The whole week we have been passively saying to each other "hey Jada's CHUBBY!" We love it!!! Jada's labs are getting done once every two weeks. Everything looks fantastic! She poops out of three to four diapers ("poops out of" means we have to change her clothes and hose her off) a day! Jada loves eating cream of wheat cereal mixed with a few ounces of apple sauce. She is now sleeping much better only waking up 1-2 times a night. For Halloween we went and visited a few people in our neighborhood and headed down to Grandma Rose's house for the rest of the evening. Once there, we went trick or treating with cousin Troy "eyore", Aunt Loni and Moki, and Uncle Sean and Aunt Teya-bird. We found out this week that another cousin is on its way! Aunt Loni and Uncle Zack are expecting a lil baby! She is five weeks along. We are sure excited for the Holidays! New pictures on their way. Love to all
Wednesday November 15, 2006
How things have changed in the last two weeks! Jada is doing absolutely wonderful! She seems to have made it through funeral and family interactions without any sicknesses. Jada LOVES a "johnny jumper" swing that we hang from Gramma Rose's pantry door. She is getting so strong! Jada also enjoys sitting on the floor playing with toys and watching "CARS". We are spending the majority of time at Gramma Roses house right now. We are having a hard time, but Jada and her cousin Troy Danny keep our spirits and perspectives in check. Thank you to everyone who has helped to take care of Jada over these last two weeks. Grandma and Grandpa Aders, and Paula, you guys are the Awsome!
Friday December 1, 2006
Wow, we let allot of time go by before updating...sooo sorry for those of you who regularly check this site. I will do better. Jada's labs are all staying perfect! We are all so pleased with how well she is doing. We pray many times a day that her health will continue to be as it is. She saw dr Book and her newest adjective for her was "robust". Wow ROBUST! We are sorry to the many Ute fans who witnessed the game last week. Had Jada Rose been there all would have been right. It was just too cold to have her in that environment. Next year she will be with us in OUR stadium "Rice Eccles South". We are looking forward to Christmas as we have bought her many presents that she will likely have no recollection of in two years...but hey its fun. Jada now is able to say "dadda". Her Daddy just melt when he hears that. She is so patient, and so willing to love anyone who comes into contact with her. Yesterday she was laying on a blanket on her floor. Daddy was being a space cadet and watching tv. He noticed she was starting to get excited and he looked down. She was trying to play hide and seek and was getting frustrated that no one was saying "oh no we don't know where Jada Rose went!" Her daddy felt so bad. But she just smiled and continued playing more. Daddy was much quicker to play the second time.
Saturday December 2, 2006
Today we celebrate the end of our drought of Jada's pictures. Jada's Grandma Dawny was awesome in catching several moments out of the last week that are quite simply regular occurrence of our smiling bubbly Jada Rose! We are so thankful for her amazing health! We feel very fortunate that she is remaining so healthy. On a daily basis we give thanks to our Father in Heaven for allowing us to experience this amazing person. Simultaneously we are praying for her continued health. We understand what a fragile and dangerous road we travel. This last month through a web site, we have witnessed two little boys who had liver disease return to heaven. We wish to send our condolences to Angel Dillon, and Angel Jackson. We followed them very close, and it was extremely difficult to experience so much loss this month.
Today I was trying to get some sleep for a upcoming graveyard shift. I laid in bed and listened to Andrea and Jada interacting outside of the doorway. Jada was just going on and on with "daadaaa" "oooeeww" and other amazing sounds, while she was pounding her toys on her cart. Andrea was responding to each and every sound just as if she was listening to her best friend telling her an intriguing story. I simply could not help but just grin and shake my head at how I had once prayed to be able to hear that very interaction almost nine months ago. Last night I walked into her room and sat in a comfortable chair just listening to her slow billowing breaths. I would get up every 5 minutes or so and walk over to see how comfortably she was sleeping. I knew she would be waking up soon for some food and actually celebrated to myself when I was able to lift that strong baby out of her crib and rest her against my chest. I fed her, changed her diaper, and again placed her on her bed tucking her into several comfortable blankets that her Gramma Rose had made for her. I watched her turn on her side and grab her binky. I don't know how she knows exactly where it is, but she doesn't even need to feel around for it. In one motion she throws her left arm forward, snatches the binky up, and faster than sound, has it back in her mouth! Its so good to be back home, back in the same room that I sat alone in and wept just under a year ago, wondering if my baby would ever get the chance to sleep in that room alone. I was so fearful of loss, so fearful of the unknown. And now here I am with all I had wished for, a healthy baby, a healthy liver, and still fearful of the unknown, of loss. How I wish Gramma Rose were here to help sweeten these moments of triumph. Moments like last night and this afternoon provide small peaceful windows into the worth of this life. Its those peaceful windows that Andrea, and I are so very grateful for. May we never forget them and may they continue to present themselves for years and years to come. Enjoy these wonderful pictures of the MIGHTY JADA ROSE!
Sunday December 10, 2006
Jada is doing wonderful right now. She loves playing with her Grandma Dawny, loves watching Disney channel. And is fascinated with all this white stuff that is falling on the ground. We sure do miss being around cousin Troy . He has had a bad cold, and cant seem to kick it! The good news is Aunt Teya, Uncle Sean, Aunt Loni, and Uncle Zak are all buying houses within 5 miles of us! There are going to be some FUN days ahead of us! Andrea and I have been doing Christmas shopping and are having so much fun picking out toys, clothes, and stuffed animals. We are going to be remodeling our home very soon. A part of this re model is to make it so our two Golden Retrievers "Tahoe", and "Wasatch" can again join us in our living areas. We cant have them in all of our house, but we feel they will do fine being able to use a refinshed basement, and kitchen. We have Christmas cards being sent out to everyone, and if you are one of the people who check this website out, you will get an early peek at our Christmas photo. Grandma Rose took this picture with us several weeks before she became an Angel. We miss her soooo much! We are so very thankful for the amazing friends and family who support us through these hard times.
Monday December 18, 2006
Today Jada is going to see Dr. Book. She will have more labs drawn and we hopefully will still be doing FANTASTIC! We are looking forward to spending time with aunts and uncles on Christmas.It appears that now everyone is very healthy, so we can start going to parties again. On Saturday morning I ( Troy ) was invited to attend a University of Utah football practice! I got to meet Coach Whittingham. Coach Whit asked me how Jada was doing? He also stated that she had been on his mind lately. He said he would LOVE to meet Jada Rose. I asked him if he had been sick lately? And he said (completly serious) " I never get sick". I laughed at him as if to say "yea right" and he kept a dead serious look on his face "no seriously" he said "I never get sick". He then knocked on his head (knocking on wood). We are excited to get some pictures of Jada with Coach Whittingham as he has had so much to do with our successful liver transplant. I took a ton of pictues and posted them through a link on the front page toward the bottom. Click the picture below to check them out.
Monday December 29, 2006
Well Christmas has come and gone. It has been a memorable Christmas. We were able to celebrate our first Holiday season with Jada Rose! Having Jada Rose open presents during Christmas was a goal and the subject of many prayers. We enjoyed each moment with her through it. However, this has also been an extremely difficult time without Gramma Rose. Gramma Rose always made Christmas so memorable. Last year she mustered up any extra cash she could find and paid for all of us to go to the Emerald Bowl to watch the Utes! We had so much fun with her. We were very well taken care of for Christmas. Uncle Bob and Aunt Claire opened their home for us to spend Christmas Eve. In the days preceding this we were able to attend a party at their house. Jada was able to attend with us and absolutely loved being around so many people who love and care about her. We were able to spend Chrstmas Eve night and Christmas Day with Grandma and Grandpa Aders. Jada Rose always LOVES spending time at Grandma and Grandpa's. They took some cute pictures.Last week we saw Dr. Book and she said it was time to slow down on the calorie intake. Jada is gaining too much fat around her belly and it could hurt the new liver. We need to stop the habit of feeding her whenever possible. This is a good thing. It is humorous how accustomed we have grown to get as much weight on Jada as possible. It was only 3 months ago that I high fived Gramma Rose for getting Jada to drink an ounce of formula! Now she is taking 6-8 ounces every 2-3 hours!We were very fearful that Jada might catch a cold at one of the family gatherings. We even received word that there might be some people who have had or are getting sick. We decided not to attend. However, we then received word that the sick people were not attending and decided to rejoin the family. Guess what? Three days later Jada Rose got sick! AAAarrrrghh! Oh well fortunately right now it is just a runny nose and a cough. Hopefully she can get through this. No fever yet (cross yer fingers). We have some photo's taken over the last week that you can view by clicking on the link below. Last night I was missing Gramma Rose a lot. I decided to go into her journal that she kept on her computer. I came across this letter she had written to Jada Rose, and wanted to post it. Being that this is sort of a journal for Jada Rose I wanted to preserve these two entries so as to assure that it would be available to her in the near future. They can be viewed on the following link.
Monday January 15, 2007
Jada has officially recovered from her cold. She is doing fantastic! Her weight is around 19 pounds. There have been several nights where Jada has slept all the way through the night! We are working on getting her feeding habits down to the point where she doesn't wake up in the middle of the night and want to eat. She is getting a lot of her teeth in, we have started feeding her some "real" food. Jada's days tend to be pretty uneventful, she wakes up around 8-8:30 and takes her morning meds. She doesn't like them very much but for the most part is willing after a little bit of coaxing. From about 9:00 - 11:00 she watches some cartoons, and plays with mom and dad. Her favorite cartoons are "Handy Manny", "Micky Mouse Clubhouse", and "Little Einsteins". Jada is almost crawling. She so wants to travel, and her big belly kind of makes it a little bit dificult at times. Once she is in her little walker/scooter (we call it her 'car'), she is capable of traveling to virtually any room in the up stairs. We try to come up with different games, and toys for her to play with in the home, as she is pretty much house confined being that we are in the middle of RSV season. She should be fully walking by springtime and will have a whole new world of discovery. Last summer one of the most theraputic interventions to Jada Rose's pain was going for walks around the block. We cant wait to be able to enjoy the out doors with her again. We are in the process of questioning the Liver Team about the possibility of having a 1 year birthday party for Jada Rose! Although we know it is an event that she most likely will not recollect, we feel it is a milestone worthy of celebration. Thanks for visiting, and please take a moment to sign Jada's Guestbook.
Thursday February 1, 2007
We had a doctors appointment on Monday. Jada Rose is doing AWSOME! In fact we are not scheduled to see the doctors for another checkup for THREE MONTHS !!! Wooohoooo! They have reduced her prograf a bit, and she was taken off two of her medications. Jada weighs 19 pounds 4 ounces. As far as other aspects in her life, she is cruising around in her "car". Watching cartoons, playing with toys, and making her parents lives absolute heaven! She now has learned to stand up on herself by pulling up on chairs, sofa's large toys, and cribs. With the increased standing, comes increased falling. She has taken a couple bonks on the head, but seems to rub them off pretty well. Tonight Jada was able to spend some time playing with her Grandma Dawny. This was nice, as Grandma and Grandpa have been sick lately and are now over their sickness. This weekend Jada will be enjoying some of our friends and family as we are having a superbowl party. Jada Rose has recieved all her bears gear and is ready to cheer on the "Giants of the Midway". We have LOTS of pictures that we need to update this site with. They should be on shortly. Also another important date is approaching. On February 27th we will celebrate Jada Rose's 1 year birthday! WHAT A YEAR!
Sunday February 11, 2007
Ok I finally have some pictures to share! Now I have been experimenting with some different slide show programs and the one that works the best seems to be Adobe. I have tried it on several computers at my work, and they all do ok. If you aren't getting it PLEASE let me know. Just click on the box that is labeled with Slide Show, it will sit on the opening page for a few seconds and should start. Also, as updates are getting a little bit further apart I realize the frequency that you may be checking will too get further apart. I have started a email that will be sent out every time we update Jada Rose's web site. If you would like notification of our updates, just send me your email through our guest page. If you make it a private message than I will be the only one to see it.
As for updating you on Jada's progress...big surprise....SHE'S STILL DOING GREAT! Andrea and I are starting to think she will probably bypass the crawling stage and just start walking. We have heard that is common with Liver Kids due to the abnormal size of their tummy. Jada is VERY strong. She is starting to experiment with standing independently. She will hold herself up with one hand then wobble from side to side for a few moments before she flops on to her bum. I swear her pain threshold is WAAAAYYYY OFF! She will clobber her head and just rub her eyes for a second or two, let out a whimper and then act like it never happened. She likes to test her parents pain threshold as well by clawing at our faces when we are feeding her or pulling on her Mommy's hair or her favorite, tugging on her Daddy's dumbo ears. Finally they have a use! We try to trim her nails but they grow like weeds! Jada's birthday is coming up soon and we are excited! It is one of those landmark moments for us. Last night Aunt Teya asked me ( Troy ) to do an interview about our experience with Jada's illness. I though I would include an excerpt from that as it seems like a worthy moment to be documented. In other news we are proud to announce that Andrea has successfully graduated her SCUBA class! She and Uncle Sean have been spending the last three weeks studying and swimming to get certified and this weekend Andrea completed her open water certification! We want to thank Grandma Dawny, Susan, Jacky, and all other people who have helped watch Jada while Andrea was doing this. I for one loved the opportunity I had to spend extra alone time with Jada Rose! Ok that's all for now, don't forget to visit the guest page and send me your email to receive update notification.
Sunday February 11, 2007
To get everyone up to date the rumors are true! Jada is crawling! She still thinks the barrel role is the most efficient means of travel but that's ok, we don't mind her being somewhat limited in her traveling capabilities. Jada does have a small cold that is hopefully on its way out. She gets a runny nose and needs to have it wiped occasionally but isn't really a big deal right now. Her words are still dadda, momma, and doggy. When we wake up in the morning we open up the sunroom where the dogs have been sleeping at night and as soon as Jada sees them she yells "Doggy!" They usually get pretty excited to see her and paw at the glass mercilessly. Jada then gets a good 3-4 minutes of laughing at the fools that they are making of themselves. She is pretty good at making it all the way through the night these days (even with a lil cold). Every other night or so she will wake up and want a small bit of formula. Jada is having her #1 birthday party this Tuesday! We are excited to be able to celebrate this event. Last month Jada and her cousin Troy Danny had a small with Russ. I have placed a link to his site where you can enjoy some amazing photos of the cutest two kids to crawl this earth. A few interesting side notes though (1) Notice how similar the two look! We have had several instances where people have seen them together in public, and asked if they were twins? We don't understand how this happened as her Dad and Troy Danny's mom look nothing alike! (2) Notice the cute little yorkie in some of the photo's. That puppy belongs to Aunt Loni, and Uncle Zak. Ironically this poor little pup is hospitalized right now due to major liver problems. She will be undergoing surgery in the next few weeks to hopefully save her life. Try and keep her in your prayers, she is Aunt Loni's "little baby". Speaking of Aunt Loni's baby we are pleased to announce that she is pregnant! She is 6 weeks to 2 months along. (3) notice how much taller Troy Danny is than Jada in these photos'...not any more! Jada has hit a growth spurt and over took him! It was so weird, one day Jada was standing in her crib and trying to reach her mobile, and two days later she had a full grasp of them. In two days she grew like 2 inches! (4) One of the cutest moments was caught by Russ, it is a cycle of Jada Rose sneezing...It is the most adorable sequence of photo's you have ever seen! Here's the link, love to all.
http://rbiehn.com/chilton/
Friday March 16, 2007
Wow! Its already been over a month since I updated this? Unbelievable! I am so sorry, I have no excuses. We have had plenty to update on, but I simply have not taken the time to sit down and document it. Ok here goes a new leaf... Again, so sorry... We had a wonderful celebration of Jada's 1st birthday. Jada was excited to see so many people and we were thrilled to have so many in our home. I created a video for Jada that accents some of the major points over the last year. I am debating if I should try and post it on this site, or throw it on to a place like youtube.com? I will figure it out in the next day or two. Jada is now standing independently! In fact she has a collection of bruises on her knees and elbows to show her "learning curve" in the standing/walking progression. She started standing with a lot of wobbling about a month ago, this was usually followed by a soft diaper sounding thud. Now she will stand and enjoy whatever is going on around her for a good 1-2 minutes. Andrea and I witnessed her first two in dependant steps a week ago. Once she figures out how much easier walking is than crawling, there will be no stopping her! We started her on normal (cow) milk a few weeks ago, but she started to get a really bad rash, so we promptly stopped the cow milk and went back to formula for a while longer. However in addition to her formula she has been eating pizza, different varieties of fruits and veggies, apple juice, and has tried several times to get her hands on Dad's Coke can! More often than not this results in someone mopping up the floor (and that someone is not Jada Rose). This "rash" was being treated with a medication called diflucan (sp?). Anyway's we started noticing Jada acting very out of character, she was getting overly upset, and did not want to go to sleep until around 2 or 3 am. Andrea consulted with the Liver Team and they informed us that this medication caused her Prograf levels to rise. NOT GOOD! Andrea ran her into the lab and they checked her Prograf levels. The levels were twice what they should have been! We had to cease the prograf for a dose and re-test her levels. Jada Rose has been into the lab more than 3 times this last week just to make sure her levels are ok. They have stabilized and she is doing great now. Jada's favorite past time is still making fun of our two Golden Retrievers through the sliding glass door. She gets them all riled up, and then laughs as they compete for her attention. Jada's crawling technique is quite fascinating: She uses both her hands of course but insists on keeping one foot on the ground while scooting the other knee. She will crawl with this technique as far as any wall or closed door will let her. I personally am hoping that she learns to either figure out how to crawl on both knees, or just starts walking because this crawling technique looks like a person who blew out their knee and is trying to crawl to safety...don't get me wrong its kinda cute but it just...doesnt...look right. Jada is extremely good at "giving kisses". If you are holding her, or she is somewhere near by and you simply say "Jada Rose, can I have a kiss?" She will come crawling (term used loosely) right up to you opening her mouth as wide as she can, and plaster a big wet kiss on your cheek! I doubt angelic messengers form heaven could deliver a more heart warming gesture! It is awesome! You cant help but billow several laughs when she does it. With the warmer weather gracing us lately she has LOVED again being outdoors. We take the puppies for walks and she grabs their ears and thinks its pretty funny to watch them jump to a safe distance.. Occasionally we don't see her do it and one or the other pups will return the sign of affection with a slobbery kiss of their own! This is of course followed by Jada's uncontrollable laughter and a prompt purell bath. This next week Andrea and I will be taking our first vacation together in well over a year! We are going to Kauai . Although we have some anxiety over leaving Jada Rose home, we know she will be in good hands with her Grandma and Grandpa. I sincerely hope I will be better at keeping this up. However as Jada's Aunt Teya reminded me, it's a GOOD thing that we arent updating the website very often because it means our lives are relatively normal!
Monday March 19, 2007
Ok, so for right now if you would like a copy of Jada's 1 year dvd that I made for her birthday celebration all you need to do is post a message on our guest book with your address and I will send one to you. I will take care of the postage, and price of the dvd as my way of apologizing for not updating this over the last month. We are pretty proud of what this little girl has accomplished and feel like many people who read this update regularly have had a vital role in her success. Therefore, we want you to be able to enjoy this dvd as we have. Basically its a music video/slide show/commentary on this last year. It is amazing to watch the progression of her sickness and then the unbelievable change that has taken place since her transplant. I went out and bought a bunch of writable DVD's so I am just sitting here waiting to sent them off. Oh by the way be sure to make it a private message so people don't have access to your personal address as they read the message board. Jada Rose is still doing absolutely wonderful by the way. We love you all.
BE SURE TO GET ME YOUR ADDRESSES IF YOU WANT A DVD!
Monday March 31, 2007
Jada and her parents are missing each of their chosen vacation destinations of last week. Andrea and I miss Kauai , and Jada misses her Grandmas house! However we are all very happy to be together again! We were able to have two web cam conversation with Jada last week but after the second one Jada and her parents each had some seperation anxiety after the conversation ended, so we decided to just check in by phone for the remainder of the vacation. Andrea and I loved being able to spend time together! We were able to tour a beautiful island, diving with humpback whales, sharks, and dolphins! A common thought shared between us was "we can't wait to be able to do this sort of thing with Jada". With the exception of her prograf level jumping around, Jada's labs all seem to be A+. Jada's new favorite food is Wendy's french fries! She LOVES to go for walks outside, but still insists on the assistance of either her "car" or a tall persons hands. To view a slideshow of each of our vacations click images below.
Friday April 7, 2007
Jada Rose recieved some awsome news this week she can now do two new activities. The Liver Team at Primary Childrens Hospital has authorized the following...
(1) Andrea gets to paint Jada's toe nails! Yea I wasn't exactly jumping up and down at this but Andrea (Jada's mom) sure is excited. I thought it was cool but, admit not to completley understanding the joys in this particular activity. Jada has these little sandals that we bought her in Kauai that Andrea says "would be so cute with little painted toesies". This leads us to #2 news.
(2) Jada Rose will be able to wear these little sandals to CHURCH on Easter Sunday! Yup Jada Rose has been cleared to attend church. We are so excited because as stated earlier we have purchased a Kauaiian "Easter" dress and matching sandals to get all dolled up in. Until now we were forbidden from attending church with Jada Rose. So many individuals are there who have prayed, and fasted for us that now get to see this healthy little munchkin! We are to keep our distance from the masses, and she also will be wearing a mask. But what a milestone for us! With spring here and summer approaching we cant wait to find out what next authorized event will be.
On Saturday Jada Rose, and I will be heading up "on the Hill" to watch the Utes go through a 90 play scrimmage. We are taking a gallon of sunscreen and a cute little backpack that Jada loves to ride in!
Sunday April 8, 2007
10:25 pm. - Arrived at PCMC ER- Going to run some tests- its good that we have a baseline from this morning- GI Doctor doesn't think it looks like a rejection, but it could be a bacterial thing :( TEMP IS NOW 104! :( :(
DARN! A frustrating day. Last night Jada started to run a fever of 102. Andrea paged the GI doctor, and she said to give her Tylenol and watch it close to see if it dropped. It finally dropped at 3am. However around 8am, it came back again. Andrea, and Aunt Teya took Jada into the ER at that point. Dad joined them en route. They ran lots of tests, and for the most part the liver function looked good. The GGT was a bit high, but not alarming. Jada's color isn't looking very good right now. She looks pale. You can tell she isn't feeling very well. They put in an IV, and ran some extra blood tests along with cultures from her nose, and throat. Some virus's may only be picked up as long as 12-24 hours later. But preliminarily, there were no signs of flu, rsv, etc. Needless to say our first church appearance was canceled. Tonight (Sunday night) Jada's temp hit 103! She really doesn't look good. Andrea is taking her back into the ER. It is possible she may get a dose of antibiotics. We are praying that this is not an early sign of rejection... Kind of worried. I (Jada's Dad) am stuck at work, but will arrange for regular updates throughout the night.
Monday April 9, 2007
9:03 PM- Test results should be back tomorrow morning. She is still pale and not feeling great. But the fever has not retruned. (russ)
3:00 PM- Ultrasound came back with no apparent problems. Now we just wait and see what the blood culture comes back with. They are first going to find out if it is EBV (epstein bar virus) sorry I know the spelling is wrong. They said we could go and look it up on the internet, and it would seem like a pretty scarry thing, but to remember that if it is that than we caught it very early before it could do too much damage. I am heading up to Primary to stay with Jada tonight. I will see if Russ could keep updates going while I am up there.
2:20 PM- Right now they are taking Jada down for an ultrasound to see if they can see anything going wrong with her spleen or liver. Today she is experiencing some discomfort. Hopefully soon we will have something back from the blood cultures.
5:00 AM-J ada is currently sleeping well. Some new concern has surfaced as her liver values are now rising at a notable level. This would be one of the signs pointing to rejection. With these values not rising we would not be worring about it, but they are rising. There is still concern that Jada could also have a serious bacterial infection. This won't be known until after the blood cultures are completed. We are praying very hard. Jada has a few days ahead of her in the hospital. Fortunately her first night occured at the end of her dad's shift so he will be able to spend a lot of time with her and releiving Andrea.
2:05 AM- WHEW! Just got another update. We are on the second antibiotic, and she looks MUCH better. She now has a temp of 100.4 this is GOOD! She is also "jumping up and down" in her crib! Andrea says she has recieved her second wind, and you would never know she was sick. LIFE---WHAT A FREAKING ROLLER COASTER!!!!!! Because of the seriousness of a 104 temp, and the nature of the antibiotics, she may need to stay in the ICS unit for around 48 hours. Ok now I REALLY AM going to watch a DVD! I am thinking Talladega Nights might be appropriate, I need a good laugh (or 30). Depending on what her blood cultures show us, she may need to have a PICC line in for a while.
2:00 AM- No word from Andrea regarding Jada's health. I don't want to call or text for fear of waking people up who desperatly need whatever sleep they can get. I assume that no news is adequate news. I would have recieved a call if anything goes wrong. I am at work and desperatly need to put in a DVD or something to keep my mind on something else. So I may not post anything for the rest of the evening. If anything changes, I will post it.
12:20 AM- AM- Jada will be admitted. She should be in her room within the next few hours. Currently they are giving her an IV- hydrocortizone is being administered right now to hopefully prevent any reaction from the antibiotic wich she will receive in about one hour. Her temp. went from 104 to 103.7...a very slight drop. Also they will be perform |
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