Been A Long Road!

Hello all again! Sorry I haven't been blogging lately, just really busy with the holidays coming up and being stressed out with my husband leaving here for 4 months to join the National Guard it's been crazy. It's snowing like mad out side the window at the moment and about 2 1/2 ft of snow and this we are not used to at all nor were we prepared in any way. Trinity is doing well she is thriving well and for the past couple of days my Husband, Son, Trinity and Myself, have been staying with my parents for a bit just in case the power decided to go out at our apartment we would have no way to heat our home, that and Donny has been towing like mad. OK anyways enough about that, back to Sissy. She got spoiled here a couple of days ago and my parents bought her an early Christmas present. It is a bouncy seat kinda like a Johnny Jump up, but it sits on the floor, and she talks and babbles and bounces away. It's funny though cause her feet do not touch the ground, so we are using my Dad's drill case so she can touch the ground. She says Momma Momma now when she is mad or tired, I'm just trying to get her to say Da Da before Donny leaves us after the holidays. So other than that not much going on, we got home before the snow hit the hills so that was a plus. We left Palo Alto, Ca on Dec 11th and got home the 12 to my parents house at about 7:30 am. We were tired but I was Thrilled to be home! It felt so weird to be gone for almost 1 1/2 months.. But even with this snow it is good to be back home in my "Comfortable Environment"! Well gonna close this or I'm going to go on forever! Till Next Time!

Every one Merry "Christ"mas and One Heck Of A Happy New Year!

Live, Laugh , Love,
Chantel R. Conn

Peter 1 5:7

Very Graphic Liver Pictures " NOT FOR THE WEAK STOMACHED"

Hi there one more time. Here are the liver pictures for the viewing audience. Please if you get sick easily please do not look at these. It is not very gross but I would feel really badly if some one did get sick

1)This first picture is of it on the cart. To the left of you in the bag that is sort of tan is a healthy adult's liver, and to the right the pieces of green are Trinity's liver.

2) This second picture is a close up picture of a slice of her liver. (They already had this cut up in pieces before I had arrived and 2 pieces are missing since they are doing tests on it) On this picture the top right hand side of this piece is where her gallbladder was sitting before her Kasi procedure. The pieces of it still are sort of there. The brown in the liver also is from rotting and where her bile duct was located before the Kasi Procedure.

If you have any questions please e-mail me and for my family you can call me. I would love to answer them.

Chantel R. Conn

Seeing My Daughters Liver

Hello again. Today was a really weird and awesome day. I finally got a phone call from one of the Social Workers from down here and she called cause she spaced to tell me what time it was to see my daughters liver. I finally arrived at 11:05 am and then got lost finding the place and had to ask 3 different people how to get there. I arrived in the spot and had to wait a minute because of another family was in front of me. They seemed to enjoy it, and the lady that saw her son's liver said it was an awesome experience. I got back there and it was only 5 feet in the door. They had it covered and asked me if I wanted to see it. I of course said "Yes", and they uncovered it. It was really weird, there was to my left on the cart a packaged healthy adult liver and then covering the rest of the table was the rest of my daughters liver. The guy that was showing me the stuff said that there were 2 pieces missing cause they are biopsying it and taking slides of it and he also showed me where the gall bladder sits and where her bile duct was sitting on her liver as well. I rattled the idea around in my head about if I should put these pictures up on the internet and I decided that I would. So these pictures are not for the sick stomached people. It really is in my book for educational purposes only. Well gonna go do some laundry and pack some stuff up to get ready to head to Oregon possibly this Friday!!!! I'm so excited!! Till Next Time!
Live, Laugh, Love,
Chantel R. Conn

Getting Ready To Go Home.... Maybe....

Hello there. I haven't been on top of updating all of you and for that I apologize. It's not that I haven't been real busy or such, just spaced it off. Well we went to clinic last Thursday at 2pm, and while Sissy's name was being called she decided to get sick all over her clothes and over her car seat. I was really embarrassed since the room was packed full of people trying to get in there and my daughter is covered in puke. I'm guessing that I was to much in a hurry to get there on time and really didn't take my time to burp her, and from that I learned a lot, but it didn't stop there. THEN what happened was got her undressed, knowing me I forgot the wipes but luckily the nurse had a ton of some in the weighing room, got her weight which was 10 lbs 10 oz, went to clean her up some more and picked her up and yet again she got sick all over the table. Thank goodness there was paper down and the table was made of fake leather. Got that cleaned up and went into my room where I waited for a good 20 minutes, finally the team somewhat show's up at at time and they tell me that her weight isn't good enough and they still want to see her progress some more. WHOO! O.K really I am doing what I can but Sissy wants to eat when she wants to eat. I wake up at 7am turn her feeds off go back to sleep for 1 hr (since she wakes me hourly just so I can find her Binky and put it back in her mouth) wake back up at 8 am give her the Prograf (which is the anti rejection medication) and then fall back asleep until 9 am and then feed her a bottle of 4 oz. Then at 12 noon I try and feed her again and she refuses to eat it. Then 1:30 rolls around and she is ready, then at 3 she is still to full to eat and then she decides shes hungry at 4:30. Then 6 o'clock time for another feeding and she is full still. After that 7 o'clock rolls around I am not able to feed her until 9 pm cause she has her Prograf at 8 pm. With this anti rejection medicine, she is not able to eat 1 hr before the medicine and 1 hour after it so her body can absorb all of the medicine. It's kinda strange, and from what I got told from the Dr's. down here and other family's that Stanford is the only ones that do it that way. So well hopefully I know when I am going home some dang nab time, would be nice. Also Tuesday I am going to see her liver in real life, some think I am weird but its really just to see what was really in my daughters body and how bad it was. Still thinking about posting pictures of it on here, don't want any one getting sick over it ! HA HA! Well Till Next Time.
Love,
Chantel R. Conn
MERRY CHRISTMAS!!!!

Thriving Beautifully!

Hello all! Today.. well yesterday was a really good day since Trinity is doing well. the blood work shows that she is not rejecting the liver from her 2 blood tests Friday and Wednesday. She is starting to laugh out loud now which come to find out I found out the hard way. Stubbed my toe on the end of the bed and boy did she think that was funny. So now all I have to do is slap my hand on my leg and say "Ow ow ow" and she belly laughs. Right at the moment she is having a very good babble discussion to her binky, its very cute! Still no word on whether or not I am comming home. Was a little disapointed today cause when my Family was here they said that I could see her liver this Tuesday.. well come to find out they wanted to kill 2 birds with 1 stone and they are waiting till NEXT Tuesday to take me so another family can go as well. Also for the bad news with Sissy.. she lost 7oz between Wednesday's apointment through yesterday's clinic apointment. Have no idea how that happened at all. But like I said other than that she is doing fine, her owwie is healing well and maybe by Thursday she will have her Bile bag capped off! Wouldn't that be nice! Ok gonna try and sleep again... Till Next Time!

Live, Laugh , Love

Chantel R. Conn

WHOO FINALLY RELEASED FROM THE HOSPITAL!!

YESSS!! We are free from the hospital and at the Ronald McDonald House for the time being till we get to come home! I am excited and kinda worried at the same time, cause it has been a month since Sissy has been with me 24-7. It's really weird and nice at the same time. Tonight we got all her medicine rounded up (well actually the Dr's did and Mommy was running around going nuts cause the car insurance company was giving me the run around about the rental car), anyways so got all that done and then the nurse came in and took out her PICC line that was located in her right arm, so all we have now left is the bile bag which will be capped off here on Wed. She is eating a bottle through out the day and then she is still on continuous feeds during the night. (Don't ask me why I have no idea why they won't let me just feed her normal.) So we are doing well and she is sleeping good at the moment. She has been teething something awful last night and kept Mommy up till 3:30 am.. Ya no sleep for me! But other than that things are going well. Her labs look good and 2x a week we are going to go over for lab draws so they can get her medication all balanced out for her to go home soon. Gosh I miss Oregon... I will probably get lost just going home, feels like an eternity! Well Till Next Time!

Live, Laugh & Love,
Chantel R. Conn

Sissy is Doing Great And Getting Smiles Also!!!

Hi there. Just posting another quick note and letting ya all know that Trinity is doing well and now she is smiling again! WHOO! Today she has been taking her binky in and out of her mouth and then also today she decided to get a wild hair and pull out her Ng tube yet again. That girl is now down to 4 times that she has done that herself!
I think it is crazy and she is not even a year old yet. She is now at a whopping 12lbs 5oz now which I think is wonderful! These past days she has been filling out more and more and now finally she now is in a size 2 diaper. She has been eating out of her bottle quite frequently and hates when she has to take her immune supressant medicine, since she can't eat 1 hr before and 1 hr after them and they are administed at 8 am and at 8pm. Then I have to wait 1 more hr to get her to take the rest of the medicine. When we come home she will be on 8 medicines, and that isn't really bad at all since some of them will go away when she matures and gets older, when she is a teenager (not looking foward to that) she will just probably be on 1 of them. I can't wait till the holiday comming up! TURKEY TIME! Since my Father,Mother,Husband and Son will be here to eat dinner with me! YA! We can all get stuffed togeather! Anyways that is about it and I guess its.. Till Next Time

Live,Laugh and Love,
Chantel R. Conn

Being Crabby and Spoiled

Hi again. Its just me. Anyways Trinity is doing really well, and her vital signs are good and she is stable. Today though she has been getting really fussy all the sudden and I think it's because of her coming down off the pain medicines. Just called in to check on her and they said that they are going to give her another round, and they will give me a call if they need me to come. I will probably pack a few things and stick around there till she gets released since I will probably feel a lot better with her in the room with me. Her incision is healing well, and today she got her JP drains taken out (which is 2 drains on the left and right side of her belly that drain the excess fluid from the surgery.) Now she is just down to the PICC line and 1 I.V in her right arm. I tried to hold her today and only got to for about 5 minutes just because of she was getting pretty heavy and the way I was holding her my arms were hurting and then she was really fussy and I didn't want to hurt her at all and I think she was in a little pain. She is spoiled let me tell you, she kept wanting the sugar water that they have pre-mixed called Sweet Ease and it helps for nurses to give that to them when they need to change the dressings or give her an I.V and she has become addicted to it so I think. Its like comparing coffee that an adult has to have!!! Anyways running out of room. Till Next Time

Love & God's Blessings,
Chantel R. Conn

New Pics Of Baby Sissy!

Doing Great!

Hello there. Just posting some pictures and updating people on how Sissy (Trinity) is
doing. Tonight at about 4:33Pm she got moved from ICU to the 3 West floor and that is great news. She is looking wonderful (as you will see in the picture's) and she is still pretty sleepy since they gave her some more pain medicine just as I was arriving.She had her 1 I.V taken out this afternoon since it infiltrated, meaning the vein blew and they had to take that one out. Then as I was leaving they had to put a new I.V in since 1 of her medicines that she is on they can't mix through another line. She did have her Broviac line out of her neck taken out today which is good news, so all she has in is 2 I.V lines in her right arm, and in her left arm she has the PICC line and then she has a new I.V line as well. Her color looks great and she seems to know who I am and is aware that I am visiting her on a regular basis. I didn't get to see her much today since I was dealing with my Insurance Company on the phone half the day beacuse of some dude hitting me in my car. I am alright and thankfully my Husband and Son were not with me they had left earlier that morning. Other than that things are looking good her way and they said by the rate she is going that I will be able to take her here to the Ronald McDonald House 2 blocks from the hospital either Monday or Tuesday of this comming week. I am so excited, I can hardly wait. Then they were saying that we should be able to come home before Christmas! WHOO!!! They also reminded me (as if I was dumb and didn't know this before hand) that since her immune system is suppressed (which means she is on medication that tricks her brain and body that she doesn't have one since that will cause liver faliure) that if any one is sick with anything I need to not have her around anyone, even if they are getting over the virus or whatever they have. Just wanted to let everyone know this in advance since I will be very jumpy the first year that I have her home. If I am not careful she could possibly get sick and have liver failure and that is a risk I am not willing to take. So all you friends and family that can come see her, I will have plenty of Purell and Soap on hand so be ready when you come to visit, cause I am going to demand that you use it before ya even walk in the door. HA HA! Anyways running out of room. Till Next Time!

Love,
Chantel R. Conn.

Ps: Happy Thanksgiving To You All!
Hope To See You Soon!

WHOO She Is Doing Awesome!

HELLOOOO PUPILS! Oh man is God awesome or what! I prayed for a liver for my daughter and guess what, on Sunday at 5pm that my daughter was getting a liver! I am so happy I could burst! She is doing really awesome and the team was just in her room checking on her and I talked to the surgeon and he said that things are progressing well. My family was up here My Mother, Father, Son came up in a car, and my husband I picked up at the airport at 10:30pm and her surgery was scheduled for 2am. It was nice having them here, and they just left today to go back home for a short time and then they will be back before Thanksgiving. She looks wonderful and is kinda puffy since she is on a steroid medicine. You can tell the difference in pictures how she looks now. She is no longer that yellow, just a very faint hint of it, and her schlara (the whites of her eyes) are clear. She is transplanted with a child's liver. She is a 0+ and she got a A liver. Well I really need to go eat something. So talk to ya all later. Till Next Time!

Love,
Chantel R. Conn

All things are Possible With God!

We Are Going On Our Way!

Hello again pupils. Well here soon Trinity will be having a new liver! We are so dang excited and pray that God will bless us and she will make it through alright. Um.. well dang can't write much cause they are ready to take her to O.R room so I have to go. I will publish more as the day goes okie dokie! See ya all soon!

Love,
Chantel R. Conn

Just Keep Chuggin Along .. TOOT TOOT!

Ok so far here is the good news just got word that her PELD score is a 31, and the liver coordinator said that they are very happy about the news. Tomorrow also they are going to present her to see how fast they can get her a 0 liver and talk among themselves, then they will talk about if they do not think they can find one fast enough then they are going to talk about her possibly being a good candidate to be open to all blood types. I did talk to my Husband about this and we decided if it came to that then we need to say yes for her sake, even though there is a higher risk of her rejecting that. This is really hard as a parent to make these decisions, but I know that the Lord above is going to take care of us. I am humbled for all the prayers that are coming our way and appreciate all of our friends and family that are hanging in there with us and supporting us. Well talk to ya all later. Till Next Time

Love,
Chantel R. Conn

New Pics Of Trinity Anne

1) We are riding in the Ambulance to Lucile Packard Childrens Hospital
2) Shh .. the baby is sleeping!
3) Whoo it's time to play!
4) We are pooped out time to sleep again!

More News On Sissy

Hi there. So the new news of the night into the morning is that I spoke with the Resident Dr. today and she said that I would know on the points for the Peld score on Friday and that it looks promising, so that they can get her higher on the list and see if we can get her a liver in 1-2 weeks. So I will know more infomation on that late on Friday afternoon. Then as I was out taking a respratory break, the nurse told me that Trinity has a fever going now and it is at 102 and she just got done giving her Tylenol and some of her medicine that can not go into the Picc line. So we will see how she does later on in the morning. So other than that nothing else is going on. Kinda cold down here and overcast but not raining or anything! So guess .. Till Next Time.

Love,Peace and God Bless,
Chantel R. Conn

WHOOO INTERNET! And More News

OH MY!!! Finally can update everyone now that the Hospital has Internet. It is crazy down here and I really want to be home at the moment! They are doing construction work from 6 am until 5pm Monday - Friday! Then the Internet has been down for 4 days and I was not able to access it anywhere till it was fixed. So far here is news... She is losing weight daily and she looks ok just really scrawny. The Liver Dr and his team were up to visit me and My husband, along with my son and Dad and they let us know that if they did not send in a e-mail along with some pictures to get her Peld Score higher then she would not last for 2 months with the Peld Score being just 28. It was at a 30 but her albumin levels in her liver had got more normal and then the Peld Score went down again. So they are submitting a e-mail and a picture like I said above to UNOS (which is called United Network for Organ Sharing) so they can make an exception for her and get her Peld Score to 35-40 instead of what it is. The Dr's. told me this is very promising and that after they get through this hoop which will take about a week, then it will be 1-2 weeks until we get a liver. I am very happy with the progress, and I hope it happens soon. Well gonna go take a respiratory break talk to ya all later.

Love,
Chantel R. Conn

Trinity Anne Picture !

NEW NEWS !

Ok friends and family. What is going on is this. We are going to Stanford tomarrow. No they don't have a liver just yet, but I think we are getting close. My Dr came in to let me know and I have no idea what time I am leaving of just yet, but I will up date this as soon as I know anything. If any one wants to call me you can do so. If I don't answer leave me a voice mail! Don't worry about bugging me just call with any questions or conceirns. Talk to ya all soon and wish Trinity and I luck as we venture again into unknown teritory! HA HA!

Love,
Chantel R. Conn

Doing Just Fine For The Time

Hi again. Ya I know I have been slacking on the posts lately... sorry! As of today the liver Dr. has her on Lasics 3x a day, (which is a liquid form for a water pill), and she is getting albumin 1x a day and she is on all day Ng tube feedings. The Dr said that she looks fuller in the face and that they would like to get a picture of her and send that down to Stanford (Lucile Packard Childrens Hospital) so they can possibly bump her higher on the list, which I think is wonderful! Then Child Life came in to visit me and they were looking for family's for some company to buy presents for, since the family's that are up here won't be spending the holidays at home! God bless them for doing that and it really means a lot to me! So got that all done and then the chaplin just came to me and asked me if I need any prayer requests, and I just said say a little one for Trinity! So now it is off for me to get clean and eat breakfast. Ya I know its late... what can ya do right? Then I am going to go down and get my camera so they can use it to take a picture of Trinity and get that sent of A.S.A.P!
Well anyways talk to ya all soon! Till Next Time!

Sincerely,
Chantel R. Conn

New video of Daddy & Trinity Having Quality Time!

Doing A Little Bit Better!

Hello there. Today has been a really good day. Other than the gray depressing sky and the rain. Trinity is doing good on her Ng feedings and only got sick 1x this morning. So that is a plus! Yesterday I did get some visitors, my twin Aunt came to visit for a little bit, and when I handed her Trinity she decided to try and get sick all over her. Then she had to go and then my parents showed up and stayed for awhile. Now my husband is up here along with my son visiting and she is smiling and having fun with her daddy!!! It is so cute! Well other than that there is no updates. Till Next Time!

Sincerely,
Chantel R. Conn

Letting Every One Know Terms That I Am Using On The Blog

Hello again friends and family. I wanted to let everyone know terms that I am using or could be using in the future and I know that majority of people are not in the field of being a nurse and or Dr so I wanted to get these terms defined for you so you are not wondering what they are. Ok 1) The Ng tube is called a Nasogastric tube and that is the one that is showed in the movie on this blog site. It is used to administer nutrition and medication from the nose to the stomach. This is what she currenly has now. 2)Is a PICC line. She is also using this. This is a central line that is a soft flexable thin tube that is inserted into the veins of the arm or in the inner thighs. The line is put in after a general or local anaesthetic. It is pretty much in a nut shell a long term I.V. It is used for her to draw her blood since she is getting weekly blood draws. 3) Is the PELD score. Peld scores are numerical scales that are currently used for liver allocation. Peld scores are based on a patients risk of dying, while waiting for a liver transplant and are based on objective and verifiable medical data. There are 2 diffrent names for them the Peld score is for children that are 12 years and younger, and the MELD scores are for kids that are over the age of 12 through adulthood. The Peld score is based solely on billirubin, INR , Albumin, growth faliure, and age when listed for transplant, factors which better predict mortality in children. These scores do not determine the likeihood of getting a transplant,which will be based upon organ availability and the distribution of Peld scores for paitents in a local area or region. 4) INR means International normalized ratio. It is a system established by the World Health Organization. Well that is all I have now if anyone has any more questions just e-mail me and I will find out. Till next time.

Sincerely,
Chantel R. Conn

Trinity Conn At Doernbechers

New movie just made today! Enjoy!

Trinity Conn

Getting Sicker by The Minute

Hello again friends and family. Sorry I haven't posted until now, lots been going on since last time. Between the bed changes and massive sponge baths during the day sometimes wonder how I keep going. Sissy is on Ng Tube feedings now constant and she is not taking them very well at all. She is getting sick all the time and I have no idea what to do for her. I just feel really bad for her and try and make her as comfortable as possible. I have talked with the Dr this morning and she said that try and keep her from flipping over on her stomach is all I can do. She has been cranky today with little grimaces and smiles once in awhile but she is really ticked of at her Mommy right now cause I won't let her go on her stomach. Wonder who she gets that from? Haaaa! Anyways right now we turned off the feedings to give her a break cause I think that she needs one and she has fluid in the belly yet again. Yes she looks like a pot belly pig again! Anyways other than that I have no updates.. oh ya I do the Dr's. talked with my Mom when she was up here spending the night and in the Morning and said that they are going to go over her PELD score again Tue or Wed of this week. Ok that is all I know off the top of my head. Well have to go. Till next time.

Sincerely, Love, God's Blessings

Chantel R. Conn

More Info On What Is Going On

Hello again. Well the last time I posted I thought we were going to do a Picc line today but turns out that they did not have enough time to get it done today so early tomarrow morning they are going to do it. It is a simple prodcedure done in 30 minutes, and I have talked with a mom who her daughter has the same thing. http://www.nlm.nih.gov/medlineplus/ency/article/007243.htm Here is the website on what a Picc line is I just hope this link works.. I have no idea what I am doing ! Ha ha.
Well other than that nothing else is going on, she is smiling again today and back to her normal self. So that is that and I will let ya know as soon as I can what is going to happen from here on out. Till next time

Sincerely,
Chantel R. Conn

Up at Doernbechers To Stay Untill The Liver Transplant

Hello again. I have some news since the last time I posted. When we were comming home from Stanford I noticed that her belly was growing again. I let this go for a few days and then called up at OHSU. They in turn told me to go see my Primary Care Physician and to see if I can get in to see him so he could asses her. Well we got into the Dr. on Monday and then they got her in. The Dr said that the acities had come back and that he was going to call my liver Dr. up at OHSU. She did talk to them and then talked to me and told me that she wanted me to pack my bags and wanted me to take Trinity to OHSU for a long term stay until she got the liver call. So now what is going on is that she is up here, has the Ng tube back in her nose, has an I.V line in her right arm and now they want to put the PICC line in her so they can quit poking her every morning to draw labs. So they are going to get this done sometime this afternoon. The Dr also said that her PELD score is going to be elevated beacuse the blood results were getting worse. So anyways the nurse is in at the moment so I am going to close this. Till next time.

Sincerely,
Chantel R. Conn

Website To Lucile Packard Childrens Hospital

I forgot to mention the website to the hospital she is going to stay at. Also just a note the Dr's. also told me yesterday if any of the family or friends have any questions, don't hesitate to call or e-mail them with any concerns or questions.
The website is http//:www.lpch.org.

Chantel R. Conn

Along with some good news comes some bad....

Hello again there. Today has been wonderful and scary at the same time. Trinity is doing good today on not getting sick and tonight I have talked to the Dr because of a concern that I had today about her poop being grey and they said that is not a concern at all and she asked how she was doing about getting sick and I said that she has not got sick all day and wondered about the Ng tube. She said that I can hold off until the weekend and then come and see her on Monday at 2pm. The Dr also told me that her 1 medicine out of several had to be increased and that was about it. As for the phone call from Stanford people down there, a nice lady called me to inform me about Trinity's PELD score and that determines how far up she will go on list. Anyways she told me that she was 27 now instead of 23 on the score and that by the results of her lab work from yesterday at OHSU that she is indeed getting more sick. Yesterday I did also ask about the living rate after liver transplant and the Dr's said that she should thrive as a normal person, with taking several medications. So that is that so far and my gut feeling is that it is going to happen within the end of November or sooner. Thank you again who all are praying for her and I love all my family and friends for supporting us during this trying time.
Till Next Time

Sincerely,
Chantel R. Conn

Getting Back To Oregon

Hello again all. I am now currently in Yuba City with family and am going to head home sometime tomarrow. Trinity is doing fine and we are going to meet up with the Stanford team on Thursday at 11:30 in Oregon. We are just going to go ahead and keep the appointment even though I have already met with them and going to also meet with my Dr up there as well so we can all be on the same page. As for Sissy (Trinity) she keeps changing as the days go by. Now she giggles at you and sometimes I can even get her to blow kisses. She is the cutest baby... ( yes Mommy loves) I was a little peeved today cause I did not get released by the time I wanted to but at least I did get out of there today. So all is well and that is all the news I have for now. Till next time pupils...

Sincerely,
Chantel R. Conn

Going Back To Oregon!! WHOO!!

Hi again there pupils. Today is going ok, kinda had a rough night yet again thanks to sharing a room with a lady and her screaming kid. Trinity slept through it per usual and then at 6am we had construction going on... I finally woke up to 7 Dr's. in the room staring at me and they let me know what was going on. They said that her fluid intake wasn't good enough for them last night so they want to put the darn NG tube back in her. Yes and I just took one out yesterday cause they said she was doing ok.. (SHOOT..RIGHT) They also said that I can be released tomarrow, which in turn is good since my Mom and Dad were headed to Visit my sister in Yuba City down here. So I get to hitch a ride in open land back home with them. I am happy about that cause I'd rather drive than fly anyday. So that is about everything that I can say and things are looking really good so far. Well all.. Till next time.

Sincerely,
Chantel R. Conn

Dr's Finally Gave Some Answers!

Hello again. ( I never know how to start so thats just what I have come to say over and over again XD!Its like a broken record.)Anyways back to what I am on here for, Trinity is doing very well. Infact so well that I got to pull the NG tube out of her this morning, the very one that I put in. They said that as long as she is getting 300ml which comes out to on average 10 oz in a day or more that she no longer needs it. They also have discontinued the Thick It mix and the Polycose also that I was mixing in the bottle. They started her off slowly with just normal amounts of formula that a normal baby would take and just today bumped it up to 24 cal which comes out to 1/2 more than normal. They also said that they did not know the exact place that she was at on the list but that the list was really short and the Dr expected to have her a liver with in 1-2 months. He said other than that she is doing well. So that is all I have so far, and I will know more Monday or Tuesday this week. Will try to keep you all updated as to what is going on. Well that is all until next time.
Sincerely, Love, & Peace
Chantel R. Conn

Doing just Fine!

Hi again. We are doing ok as for now. I just got word yesterday that she is healty enough to go through the liver transplant and we are now listed as of yesterday. One thing that I wanted to bring to friends and family's attention is that we could possibly sometime down the road get a phone call for a liver , get here to California and then get sent back home. They said that is a possibility and just to be aware of that. If and when she does get a liver transplant she will be on anti-rejection medication for the rest of her life . Also her immune system will be way low and she will have to stay away from sick people ect when she has that done. As for now I am waiting for the Dr's. to show up and ask 50 billion questions so I know what is going on and when we will possibly be going home. I miss all my family and friends and can't wait to see you all again soon when we come home. I will talk to ya soon and anyone don't hesitate to call me. Till next time.

Sincerely, Love Ect! XD,
Chantel R . Conn

Mother and Baby at Childrens Hospital

Hello there. Well this is the 3rd time that I have tried to post and all the sudden it erases it so I had to come out in the lobby and try it this way. So far some of you know that I was comming here to Palo Alto to just get an evaluation and come home. Well as of right now it is not going that way. I was noticing Trinity's belly grow a little on the 14th before we left and today it is just huge. So after all the people that I met today the Dr's were last and I told them that I did not feel safe flying her in that condition so they are keeping me here untill futher notice. They are going to meet tomarrow and talk about Trinity and her liver transplant evaluation tomarrow so I will know more about that then and update it all at that time. If any one wants to chit chat or just e-mail me please feel free to do so. I have much time on my hands and wouldn't mind a e-mail or phone call at all. Other than that so far nothing is going on. Well anyways till next time!

Sincerely,
Chantel R. Conn

Arrgggg Nasty Cold Time

Hello again. Today is cruddy. I some how recieved a cold from someone and I have no idea who from. But in return I did hand it over to my husband as well, on accident.
As for Trinity she is doing ok. She keeps getting sick between 3am-4am, like clock work and I am doing laundry around the clock. She is smiling still and is happy, but she still does have a bad diaper rash from the Hospital and she cries when I change her. We are still as far as I know going to Stanford Universtiy. I still have not heard anything from the Oregon Health Plan lady or anyone else for that matter, probably beacuse it is Columbis Day and they are closed. Other that that no more news that my stuffed up head can think of. Well, till next time.

Chantel R. Conn

More Updates

Hello again. Today is going ok. Got Trinity up this morning at 9:45am and got ready to change her and the phone rang. It was the Oregon Health Plan lady calling me back to let me know that they are still working on transportation to get me there to Palo Alto, Ca and that she would be calling me through out the day. I was still conversing with her and I heard Sissy crying. Ran in the bed room and she got sick all over everything in her crib and had the bad case of the Poo poos also! ARGGG!!! Told her I had to go and for her to call me back. Got her in the tub and gave her a warm little baby bath and got her all dried up ect. Then the Dr's nurse from OHSU called and was conceirned about Trinity being lathargic and wanted me to take her to the emergency room. I was supprised and told her she is only non active when she gets done being sick. They still want me to have her checked out to make sure she is ok. I have to go get her weight checked in Carlton. Other than that no more news. Till next time.
Chantel R. Conn

Trinity Anne Babble (July of '08)

Today Good News!!!!

Hello there. Good news Oregon Health Plan lady called me an asked me if Oct the 15-17th was ok for me to go down to Stanford University to go for the Pre-Op.I said that was fine and they are now getting the tickets for me tomarrow. So that is what is going on for now. I am really excited that this is going fast. As for her she got sick last night and then we gave her a bath, got her dressed and then she was fine for the night. Then Donny and I got her up this morning at 8:30 and sat her down on the bed and then Blahh... with in 4 minutes she got sick 4x all over the bed all down the sheets, the dirty clothes. It was a mess.. Other than that she is doing ok. She kept her bottle down this afternoon and seems to be keeping the 2nd one down also. She hates the Ng Tube and tends to pull on it during the night and day. We got these things from the Hospital that I asked for and that she had during the Kasi procedure the nurses call them "No No's". They hold her arm straight so she can't pull out her Ng tube. It's better than keeping her blanket tight next to her arms, and then she sweats and I think usually she is potty. Anyway so far so good. After this is just waiting. Never know though we could get lucky and get one while we are down there for 3 days. Till next time

Chantel

New Updates On Trinity

Hello all again. Sorry I haven't blogged for a few days. Things got crazy up at OHSU. Well as of right now we are home. I had to fight the Dr's. tooth and nail cause they didn't think that I had enough support at home and were worried about me doing majority of the work with Trinity. I am ok with it and am going to have all the help from friends and family I need I told them. Today in 1 hr time I got told 2x yes I was going home and then 2x no I wasn't. I got lucky today at 3pm and saw my liver Dr. passing my room. I stopped her and let her know that I was upset and I really just wanted to go home today, since that is what she told me on Saturday. She said the same as I mentioned above about having help and I told her that I was ok with everything. She talked to the team and then let me go home... after talking with a social worker and making sure everything was good at home! I then finished my conversation with the guy that helped me with the machine for at home feedings. He was a really nice man, and explained things really well and that made me feel comfortable with me going home even more. Well for the time being she is in the front room in her pack and play and she is getting her feedings by the machine. She is fast asleep and doing well. Tonight though Donny and I had to change her face dressing so it can keep the tube tight to her face so she can move her head with out her moving the tube. As for now all she has for the machine is 12 hr night feedings and then can be bottle fed during the day. On Friday I go into Carlton to the local Dr's. office to get her weighed . Next Thurdsay I then go at 9:30 am to my regular primary care physician's office to just make sure that her belly is not gaining any more fluid or distending and also to get her weight. Then the next week I go into OHSU and see the people that are comming up to there from Stanford University to just do a day clinic and I have no idea what time it is going to be for they are going to schedual it and call me with the time. Then after that ... the people at Stanford University are going to schedual me to fly down there for the Pre-Op ect ect.... So anyways that is that and we will see what tomarrow brings. Oh and just by the way the only reason she has the Ng tube is because of nutritinal reasons and for her to put on some more weight faster.!
God Bless

Chantel R. Conn

More Updates

Hello there. Today has been OK this morning she threw up as I was walking in the door. All over the floor and all over Mommy! Then I called the nurse in and she helped me clean it up. Then I gave her a sponge bath and changed her diaper. Then we finally fell asleep at 2:30 am. Today she has been doing well. She got stopped on her formula at 6 am this morning so they can do a x-ray of her stomach and bowels to see if there is any obstruction causing her to vomit. Good news is there is none and she is good as gold there. They wanted to see the medicine they gave her down to her Colon so they are going to take her back to x-ray here at 1:30pm. They did take her I.V out of her head and she doesn't need it any more. Other thing is I probably wasn't listening to the Dr. very well. She said that on Oct 23 that I don't have to stay over night. Its just coming in to the clinic so I just wanted to let ya all know that. At the moment we moved to Rm 24 and we are on the South part Level 9 just in case any one wants to come visit us. She is napping at the moment and she is in good spirits and in God's hands.
Well talk to ya all later. Till next time

Chantel R. Conn

Trinity Update

Hello there family and friends. Ok I have lots of information for Trinity from my liver Dr up there at OHSU. Ok for 1 Trinity is doing o.k as for the swelling in her belly and it is going down. WHOO Praise GOD! For 2nd she has been getting sick last night and into the early morning and that isn't really good but there is good with the bad, she is now 11lbs! Last night my Mother spent the night with me and helped out, which I appreciate very much, and that was fun to have some one up there to talk to. The Dr came in this afternoon and talked to us and told us that we will probably be going home on Tuesday and in the meantime she is going to have a scope put down her throat and see if she has any blockage causing her to get sick as much as she does, and then possibly tomarrow or Monday she will have an Echo gram done on her heart since she was born with a slight heart murmur and then an ultrasound to see how much fluid is left in her belly. Then I will be getting a good teaching on doing the NG tube since she is going to have that till she gets the transplant. Ok then off to home Tuesday, then we are going to go back up to OHSU at Doernbechers in Portland on the 23 of October since the team from Stanford University is going to come up and check on there paitents that have or are going to have a liver transplant. (They do this 3 times in a year), and be there for a couple of days. Then they will give me a call within 2 weeks to set up a Pre Op appointment for me and Trinity to fly down to Stanford University and stay there for 2-5 days so they can do lab work ect. Then fly back home and then wait for the phone call that the liver is ready to go and fly there fast. So that is the just of what I know so far. Probably I have some more information but at the time that is all I can remember. Oh and I wanted to take the time to say Thank You people who have visited me and Trinity at the hospital. Also I wanted to say a HUGE BIG Thank You for people who are praying for our family and that are having there churches pray for us. I love each one of my family members and friends and thank the Lord for them! I give you all the Lords Blessings in your family's as well and thank you for being here for Myself and my family. We really appreicate all of you. Well till next time!
Love,
Chantel R. Conn

Liver Transplant Here We Come

Hello there. Been awhile , sorry I haven't posted yet, been kinda busy. OK latest news is that Yesterday my Father Vince and I came up here for just a check up. We be known to us they had to admit my little Trinity cause they are sure she has fluid in her belly. Pretty much normal when the Kasi Procedure did not work at all. Dr Eralu (pronounced er-a-lu) said that we needed to admit her and get her started on her lab work and the faster we go the better off she would be. So did all that and now she has what is called a Ng tube down her nose that goes to the stomach to feed her better. I can still feed her normaly but this increases calories and what she needs at the moment is to gain weight so she can do better during the liver transplant. Ok as for the liver transplant we chose Seattle, Wa but they are on a contract and do not accept my heath plan, so now we are flying to Sanfransisco, Ca down to Stanford University! They are paying for it all food and all of that so that takes a big weight off our shoulders. Now its just the fact of when and and then its now. When we go home we have to have the NG tube with us at home so I will be probably staying there untill we get ready to leave to Ca. Update on her at this time, she has the Ng tube down her nose, and she has a I.V in her vein on the side of her head. Then she has a stocking cap over that so she doesn't get a wild hair and pull it out. She is in good spirits and she s the nurses comming in the morning and waking her baby sleep, but she seems fine and her belly has gone down alot since last night. So that is that and hope to talk to friends and family soon. Till next time

Chantel R. Conn

Trinity Anne After Kasi Procedure

Hello Mommy!!!
Ohh whats that Mommy?!
Yes I am cute....

Hey what is up !?

Ya I am cooing....

Hot Indian Summer!

Hello! Today was ok. Little miss (as I call her) kept mommy up all night last night. She didn't feel very well and I think it was beacuse of the weather. It was about 90 yesterday and I think it got to 92 deg. today. WOW and it's the middle of September that is crazy. I am sure of the weather got to her since I was up untill 2:30 am dealing with changing diapers, about 4 thanks to the doo doo's.
We took our medicine last night pretty well but the others were comming back up. Today is the complete opposite. Got about 2 oz of the medicine bottle and that was it. Right at the moment she is babbling and probably wanting a bottle. It is a oven here in the apartment and the only thing that is keeping the family cool is fans. Well it is time to go. Till next time.
Chantel Conn

Trinity Anne Still Getting Sick

Hello again. Today has been fun oh my let me tell ya. Little Miss has been getting sick all day and I don't know if it was the heat wave we had or just her but almost every bottle she has had has been comming back up. I hope it is good news on Thursday when I go to my Dr's. office and get her weighed. She also has been cranky today and I really think her teeth are getting worse and really bugging her. Well have to go she is ready for bed. Till next time
Chantel Conn

September 11th 2008

Forgot..
I want to say to the people out there who lost there loved ones on September 11 2001,
I want to send out my condolences to you and your family's. They will never be forgotten, and to all the troops out there fighting for our country and our nations safety Thank You and God Bless You!!!

Chantel Conn

Whoo! Gaining Weight Slowly

Hello there. Today I did get Trinity weighed at the Dr's. office and she gained 2 oz. That is awesome . 2 weeks ago I took her in and she went from 9lbs 8oz to 10lbs 1 oz. So that is awesome!
She is still getting sick but I think in time that will go away. The Dr's. appointment is Oct 2nd and I really need to talk to them about if she is indeed going to have a liver transplant or not. I hate this um well she's not there yet but um... That doesn't tell me much at all and doesn't really get me prepared mentally . Other than that the family is doing OK. Vincent is in the 3rd grade this year and is growing like a weed. Donny still is in National Guard and is going regularly once a month to drill. Till next time
Chantel Conn

Today is mixed emotions

Hello again. The Thicket mix seems to be doing the trick. She did get sick last night which was weird but before I gave her the whole bottle she kinda gagged on it. I waited a little while to feed her and then gave her the bottle since it had been about 4 1/2 hrs since she had a feeding. She drank it about 3:30am and then I put her bink in her mouth and out came the formula and it all.
Today she seems to be doing fine. I think though that I should feed her more than 3 oz every 3 hrs.
I might just try 4 oz every 3 hrs and see how that goes. I want her to get healthy and chunky so if she does need a liver transplant then she will be OK to have one. I just really don't want to have that G tube put in and having to do it myself and all that. I just want her food to stay down and her to be a healthy weight. I am really trying but to me I just feel that I am failing and going backwards all the time. Anyways I am gonna go get some sleep cause I know Lil Trinity will be waking me up here soon for another feeding. Well all till next time.
Chantel Conn

WOW! Need to update more often!

Hello there again. It has been awhile since I have been on here and I apoilgize for that. Just been really busy with life. Running around with my head cut off. Ok as for the update on Trinity so far so good. Went to my regular peditriction and had a check up for her. He looked at her and talked a little bit and thinks that she will have to have a liver transplant soon. That was this Wednesday. Went up to Doernbeckers on Thursday this week and FINALLY got to talk to my regular Gast. Dr. and she said that we wern't ready just yet for the liver transplant but she didn't think that we were that far away from it. She told me that for one she would have to maintain her weight (get fatter) and get her vitamins and biliruben levels smoothed out for her to have it. She did give me something that is keeping her food down (thank God for that ). It is called Thick It and it works wonders. Just 3 teaspoons in her bottle along with the Progestmil and the Polycose. She has been keeping her food down since I got the stuff and I am a really happy Mother. The Dr said that if she wasn't keeping her food down that I would have to spend the week up there at Doernbeckers and then be trained to put a tube in her nose to her stomach and then have to take her home and have it here for a long time, and that there would be lots of stuff for medicare to send to my house. >< Lets just hope for the best.I just want this stuff to do the trick and we won't have to go down the road of her liver transplant and just have a happy healthy child. She did get off her aquavite medicine but as for now she is still on 5 medicines. It is ok and working like its going to. I would just like to see my child normal color. She is babbling now which is cute and I do get a coo and a talking to when I talk to her or just look at her. As for crawling she hasn't started the army crawl just yet but she is working on it. Sometime soon I will update a new picture of her (if I can remember). Hopefully I will keep blogging regularly. Till next time
Chantel

Today,Tomarrow, and Forever

Hello again! I haven't really got to blog these past couple of days cause I have been really busy with dealing with a 8 year old and panning out medications left and right, cleaning up vomit, diapers, laundry and all that fun stuff a parent has to do. That and being slept deprived cause I have to wake up every 3 hrs to feed Trinity. Don't get me wrong I am not complaining at all. I love being a mom and I think that this is making me a stronger woman inside and out. So anyways update on my daughter, she is doing fine gaining weight per normal (finally) . We have her on 24 cal diet, so for 100ml of water we give 2 scoops. We did have an incident last night after giving her the medicine bottle. Yes she did get sick, but I think that was because of 1 or 2 things. Either she got way to much air in her bottle, or she choked cause she was falling asleep. I got her cleaned up and she was fine. Then I waited a little while to feed her the rest of the bottle. She still looks yellow but I can tell she is getting tubby. Well that is it for now. Till Next Time
Chantel

*Yawn* Can't Sleep At All...

Hello there. Yes I know it is 2am in the morning, but I can't sleep worth a darn. It is to hot in my house to sleep for 1 and for 2 my mind is just racing at the moment. I hope that they go to weigh her and we can just come home. Ya never know I keep an open mind. Would be nice though. The one thing that I am going to do is ask for a blood test tomarrow for her biliruben levels. I really want to know if they are going down or not. Some days she looks like she is clearing up and other days she looks really terrible to me. Well the Princess is up for a feeding I need to get off here. Till next time.
Chantel Conn

Dealing With Emotions

Hello there all. Today has been really crazy cause I have been dealing with my daughter getting sick lately, and I can't seem to keep anything down her.. even her medicine. I am so worried and scarred that she is going to have to go through with a liver transplant, I feel like I am going to burst. When I was little about 5-6 years old , I dreamed about having a daughter and naming her Briar Rose or Aurora like in the Sleeping Beauty movie. Yes I was a child, and no I didn't get to name her that but her name fits her for what she is going through. I always knew that I would have a daughter and now that she is here I wouldn't trade her for anything. She is my little angel and my lil boo boo bear. As tears are rolling down my face, I am so full with emotion cause I don't know what I would do if anything happened to her my world would be crushed. I really feel bad for my 8 year old cause I don't think I am giving him the attention he needs. He is such a wonderful little boy. He has really helped me these past few weeks with handing me towels to clean up vomit or diapers and wipes. I love him so much also, he is my little bunny so I call it. If I accidently call his sister bunny he gets a little mad and tells me " Mom that is my nickname." But if I call him that infront of his friends he gets a little embarresed which I can understand. As for now the plan is this week to get in Monday still and see if they can get her weight gained back.
I might bring her in early today since my parents fed her here at 11:30pm and she threw up.
Got back home and she got sick again all over her car seat. Well enough for now I think I need to get some sleep. Till next time.
Chantel Conn

Update On Trinity

Hello there. Yes I know that I am behind in blogging. Please forgive me. It has been kaos for the past few weeks. We had a small town gathering in Carlton, Oregon and that was insane. We did though get to watch some of the parade which was Trinity's first and she pretty much slept through it cause it was 95 deg. Hot! Now in our home town we have Turkey Rama yesterday and today. Today we are going to go to the demolition derby, mud races and the monster truck gathering at the Yamhill County Fairgrounds. Trinity will stay with Grandma at the time since it is 91 deg here already and I don't want her to burn. Last night and this morning was crazy. I fed her 3 oz of milk and then got ready to burp her. Blahhh, up it came. Then as I was making dinner my husband was watching her and they were playing. She burped and 1 min later she puked totally. Out her nose and mouth all over the blanket and then he hollered at me for me to help. Then we were up till 3:30 am. She could not go to sleep for some reason. Maby her stomach was still upset from her getting sick.. who knows. Well I need to get going. Getting ready for tonight. Till next time
Chantel Conn

Having Fun

Hello again. Well yesterday was loads of fun. Trinity has the poos and I have no idea what is causing it. She was so happy and then I walked back in 30 min later to check on her and she had it running down her leg and up her back and clear up to her belly and it soaked her clothes. Ewww..
She is doing alot better than she was. You talk to her and she just smiles and giggles. Yesterday she got so mad cause I was changing her that she flipped herself over to her stomach. She is very strong. I just can't wait till she starts talking and saying "Da da" and "Momma". Other than all that there is nothing else that I can update on. Till next time.
Chantel Conn

Arrggg... days of fun....

Hello again. Well today has been fun.. NOT XD! Started off with Trinity waking me up as she is choking on her spit and got sick a little. After having a major attack with her freaking me out I waited a good 30 min and then I fed her at 6:30 this morning. Fell back asleep and then she woke me up at 9am for another feeding. She was fine after those feedings and didn't get sick. Ok then we get her fed at 12:30pm and I sit her down for a break and wanting to go out side and smoke, ( I know its a bad habit and I will quit again). So as I set her down of course she wants to still be held... I let her cry a little and then she starts smiling and kinda laughing so then everything is cool (for the time being). I get back in the house sit down and then she just starts screaming. I'm thinking OK she just got fed, changed , what in the world is wrong with her. I pick her up and as I do something is running down my arm.... ARRGGG she had the case of the runs.... all over in her seat all over me and all down her leg. So get her cleaned up and such. Feed her again at 4pm. She is doing fine. Feed her again at 7:00 pm and get about 3 1/2 oz down her she is done get ready to burp her and BLAHHH all down the front of me .. so its bath time for us both. Wipe her up so she doesn't slip in my hands and then get her in the baby bath. Now at the time being I have no idea what is wrong with her. Maby she has a belly ache I don't know but the Dr's. told me to at least feed her 8 to 12 times a day and she is only getting 3-4 oz in a feeding. What am I doing wrong. Who knows. Tomarow I am going to make a phone call and see what I can do cause really she did gain some weight but if she keeps getting sick like this she is going to be going backwards instead of forward. And Mommy is going crazy. Well till next time.
Chantel Conn

Somewhat Ok News

Hello there. Yesterday I didn't post cause I was so wiped out and tired, thanks to the trip half the day to Portland. Well we got there at 12:20 signed into get Trinity's blood work done and were sitting. She got hungry and I fed her a bottle, and she got so relaxed that she did a poop.. (WHOO STINKY) So then went to change her and low and behold they called her name and I was in the changing room . Then went outside and then sat again for 15 more minutes.Then decided that they skipped me and they had on the paper that they called 4x and skipped her. So I signed her up again and they came out in 2 minutes and asked who was Trinity's Mom.. I hollered and then they got her with in 2 minutes. Took her blood out of her arm, and that was not good. She screamed loud and hated it. Then waited another 30 minutes and then got annoyed and asked what was taking so long , they said that some one had a staff infection and that they had to sanitize the other room. Annoyed again went to sit down and she pooped again so back to the bathroom. Finally 10 min later they took someone elses room and got us in. Well then in walked a resident who said that the biliruben was down to 4.5 ... WHOO excited.
Then 15 min later same dude walked in and said that was only the direct not total. (there are 3 kinds of biliruben. Direct , Indirect, and total) So another long *** wait and I am frustrated , then in walks the gastric doctor and she looks her over and looks at the poo and says she is coming along well. Then the surgeon Dr. and says that the biliruben hasn't dropped like he wanted it to but that it did drop a point and that he wants to see me back in a month. Yea... get to go to Portland again. So after being there at 12:20 pm and finally getting out of there by 3:45 we get to rush Hr traffic. Oh well what can ya do right. So so far so good. Just gonna take time and a long road to see if this kasi procedure will do the thing. Till next time.
Chantel Conn

Oh yea forgot.

Oh ya I forgot to say. Thank you to all the fathers out there reading this post. You are a blessing to your family and deeply loved. We wifes, girlfriends, and or daughters appreciate you very much.
That said I hope you have A Happy Fathers Day .... beacuse you deserve it.

Chantel Conn

Oh yea forgot.

Arrggg forgot to post....

Hello again. We are still doing fine. Trinity is starting to giggle a little bit more everyday and last night as I was watching her she found her little feet and was staring at them for a few minutes. Some of my family members are concerned about her cause she is not getting really chunky and putting on some weight. Now that I sit here and think about it for a while , she still is in newborn diapers and clothes and she is going to be 3 months here soon. To me maby it just was the surgery she had and that it might take a while for her to put on some weight and gain a few pounds. I have an appointment on June the 18Th at 12 pm up at OHSU campus, but maby I will give a call and put to rest to those who are concerned about her. She is looking better to me and is taking her medications well so I think things are going smoothly. Well have to go. Till next time.
Chantel Conn

Summer Days Here To Stay

Hi there. Today we both are doing good. Lil miss Trinity went to bed last night with Mommy at 10:30pm. And then we woke up and got fed at 3:30. Then she just woke mom up at 9:00am and then she threw up everywhere. Must be the medicine that is making her do that. Who knows. (Whoa weird just had deja vu) Well we need to go get Vincent, he is at the gastation so till next time.
Chantel Conn

Nice Day!

Hi there. Yes it is a nice day out. About 55 deg., and windy but I will take it over rain any day. Trinity is doing great as the days go by. She is pretty much sleeping through the night now and woke me up at 6:30 am for a feeding then about 9am, so she is on a regular schedule again. Its kinda a pain to give her the medicine she needs, especially when she is demanding and wants food NOW not later. HA HA. Her incision is healing very well and she takes her medicine mixed with her formula and or breast milk good. Doesn't even spit it out. I am very lucky that she takes it that way and I am also lucky and thank God that everything at the moment is going well. Till next time
Chantel Conn

My Little Angel

Hi again. Last night was so nice to sleep through the night and not wake up at 5:30 am. Got some real sleep and I feel refreshed and ready to start the day. She woke me up this morning at 7:10 hollering so we got up, got her fed and changed her poo diaper. WHOO!!! Never thought as a mom I would be this excited about poo, ha ha . Kinda funny if you think about it. She is looking better by the day and I love seeing this improvement. Her drain hole is no longer leaking so that is a plus (less laundry for Mommy to do). She is starting to smile a lot more now and knows who is holding her, and getting a lot more demanding when she is dirty or hungry. Well its getting late in the A.M so I am gonna go need to finish the house somewhat today. Till next time
Chantel Conn

Home and Enjoying It!!

Yes I am at home sitting at the PC and looking at my dirty house but it was better than sitting up there not knowing what to do with yourself. I mean don't get me wrong the care up there was excellent but its just not the same being home. She is doing well today we woke Mommy up at 5:30 am this morning for a feeding then at 7:00 am cause we were throwing a fit and pushed ourselves up to the top of the crib. So I fed her and then we fell back a sleep then she woke up at 9:30 am and then out came yucky medicine time. She has lots let me tell you. But anything to make her better. As of right now she is sucking on her Bink and sitting in her bouncy chair and not a care in the world (and then we are trying to eat the blanket). My say is that I think everything is going well and that she is doing better by the day. She sure has the attitude of both parents, ha ha. Well we have to get some more prescriptions filled, so till next time.
Chantel Conn

Finally Out Of The Hospital

Hi there. I know that I said she would be out by tomorrow but I asked the Dr's. if it would be OK if they could release her this afternoon and they said she was doing great and that it would be fine. Today they did take her biliruben sample and said that it was way outrageous cause her blood is clotting and that they would take it next Wednesday and that there was no worries. So as we were getting ready she puked up her formula and the nurse fed her 4 oz and she didn't know that she was getting only 2oz for a bit. So then got her kinda cleaned up and then headed down to the car she was fine and all that. Then got almost to the freeway, maybe a block away and I had the car radio turned down enough that I would hear her if she did get sick again and low and behold (blahhh). OK so I pull over get her changed cause its all gross and then her stomach where her drain was is leaking and that is all over her new outfit. So we get to the station and such . She is crying and she is gassy. We then in turn go and get her prescriptions and as we are turning into Safeway parking lot she gets sick again... there goes outfit # 2 and blanket # 2 . Get her out of the clothes and her drain hole is leaking yet again, so I change her diaper, then wrap her up in a big soft blanket. So as we get back out to the car she is leaking out her drain again and have to change it. We get home get her all cleaned up somewhat change her bandages, clothes ect and she is crying cause she is so gassy. I pat her on the back and she gives me this nasty formula burp in my face. (blah). Get her in the car and back to the gastation , and as of this time being she is doing well. Making faces and smiling a little at people. So ya there are some down falls to what has happened to our family , but to tell you all the truth , I wouldn't change it for the world.
Made me open up my eyes and realize that life is what you make it , so make it as best you can.
Till next time
Chantel Conn

Day 8 In Hospital

Hello there, back again. Well as of this morning they said that she looks great and that we can both go home tomarrow. WHOO! I am so excited. Today they just have to check her biliruben levels with a test. They just got done checking her stools and said that the green was toxins in the liver and that was excelent, and that if he didn't know this was her room he wouldn't have recognized her. So I am sure that her color has changed alot. I am so pleased with what is going on with her. I am glad for all the people praying for her, and thankful to my lord and savior that he gave myself and Donny this wonderful, presious little angel. If it wasn't for a little faith, I would have given up long ago. Well till next time.
Chantel Conn

Day 6 of being in Hospital

Hello there! I am back again to update people on my family and the progress of my daughter Trinity Anne.
Well as of this morning at 9:30 am I finally got to feed her some pumped breast milk and then a 2 oz bottle of her special forumla. Well as I was sitting there acting all goofy and such she had a bowel and started getting red in the face and crying. So I was all excited and such, and I must have been very loud cause the nurse that is taking care of her ran in and asked what was going on. I told her and she cheered. That was at 10:25 am. Then she got her catheter taken out today and then one of her I.V's blew again. Whoo... (not) . So then came the poking and prodding of her 3x then they finally got one on her foot. She is so black and blue and I was getting frustrated so I decided to take a break and go out to the car before I lost my cool. Called my husband several times as I knew he was headed on the way up and after 3x calling him I got him on the phone to let him know what was going on. Finally he showed up at 12:30 and got to see her and hold her. I was so happy to see him with her I could have burst with happiness. So then just before we went to lunch I got to feed her the vitamins in a bottle with diluted down pedialite. (Smells really gross) Went to lunch and all that, then got back and my husband Donny said that he thought he smelled something. WHOO POOP!!!! I was all excited again and the nurse I caught in the hall and said loud " She did a doo doo". We laughed and got her all cleaned up and then she fell asleep again. So all is going still as planned. Her incision looks good other than it is pretty much across her stomach. And she still has whats called a drain in her belly from the left over stuff from surgery, and she did get a new I.V put in, but to me it is all looking great. She is up, doing well and she just smiled at me just before I came down to the 9th floor to do laundry. I am glad things are finally looking up. Can't wait to come home. Well all till next time!!
Chantel Conn

Day 1 of blogin

Hi there all. This is my first time so don't laugh. XD. As most of you , friends and family that are looking know who I am , and those of you who don't my name is Chantel Conn. I am wife and a mother of a 8 year old Vincent and a somewhat new mother to a daughter Trinity that is 2 months.
So pretty much this blog is going to follow some really importand stuff that has happened to my daughter here these past couple of weeks, and is dedicated to see if there is ever going to be a cure for Biliary Artresia. So now for my story ...
My pregnancy was somewhat normal other than I was way overweight and after a blood glucouse test I was told that I had gestational diabetes. So after grueling time of (kinda) going on a strict diet and all that everything was going ok. My blood sugar levels were spiking about the last week I had left and went in on Tuesday April 3rd 2008 to my Drs. apointment. Long story short I told them that had a cold and that I really wasn't taking my blood sugar levels cause I was in bed most the week. Well be known to me they decided to take her c-section that day at 8:07pm and was 8lbs 8oz and was healthy and cute and tubby. So as days went by someone noticed that she was turning a little yellow and that she might have jaundice. I just shrugged it of as oh it will go away. Well then she had her 1 week check up and I asked them if they would take a look at her to make sure and (not naming Drs. Office) they said she was fine. After awhile it got worse and worse so finally a lady that I know from my fathers station looked at her and she knew something was wrong so she called her nurse friend and then called my mother and told her to tell me to get a 2nd opinion. So then we went to a family Drs. office in Mcminville and they ordered tests on her 2x. Both results turned out that her billiruben was to high and her liver enzymes were also elevated. So the Dr (who I known for years) called OHSU and got me an appointment with in a week. So then we went for more test and Ct scans to see if the tracer could be found that got injected into her I.V. That was not going well on Thursday May ,29th, so they ordered me to come back the next day. We did and then we got good news that the tracer was down in the bowels and that it would be minimal for sugery. Well got up there to the Dr. up at OHSU and got told that she had this rare disease Biliary Artresia. That was like a slap in the face my hopes were so dang high and then bam the hammer hit the nail. She was going to have sugery at 2 months old. On June 2nd 2008 we went in for pre-operation and she had an I.V put in and all that. Then came the day June 3rd 2008 surgery day. All went well and lots of people were there to support me and my husband. Felt like an eternity when I finally got to see her. As of now she is doing well. She had her biliruben checked and it did go down a point. And she did poo her orange vitamins out day before yesterday. So as of June 7th 2008 (today) she is progressing and might be able to come home tomarrow or Monday night. I can't wait!!!!! Well everyone till next time.
Chantel Conn