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