pictures

Alivia March 30, 2 days before the surgery.  This would
have been the 2nd day in the hospital...the day we
got the diagnosis of Biliary Atresia.

April 3, 2 days AFTER surgery. This is when she got
out of PICU and back into a regular baby room.

Wednesday, April 6. The day before she got released
from the hospital. 5 days post surgery

This is also on the 6th. This is for everyone to see
her battle wound.

Today, Sunday, April 17. Look how happy she is. She looks and
obviously feels much better.

17 days after the surgery, this is what her scar is looking like.
It is healing really well and someday might not hardly show up.

Kindof hard to see in the picture, but she is much
less yellow that she was 3 weeks ago.

The followup appointment

So Wednesday was the first follow-up appointment. They gave us a whole 5 days at home before we had to be back down there. Oh well, I guess that's how it works.  We decided to just make it a day trip since we were all tired of being away from home.  We left just before 6 am to head down to SLC to Primary Children's Medical Center. We got down there about 1 1/2 hours before the doctor appointment so that we could get labs run.

We met with the surgeon first. He checked out the incision and said it looks great. He then pulled up the lab results and told us that everything looks like it is doing what it is supposed to be doing. The bilirubin levels are going down, the liver enzyme levels are lower as well.  Those were the only 2 that we discussed, but they must have been the most important.  He was really happy with how things looked. And he was really thrilled when Miss Alivia gave him one of her big open-mouthed smiles.  He then walked us over to the GI doctor so we could meet with them.

We actually ended up just meeting with the Nurse Practitioner and our assigned nurse. They, like the surgeon were thrilled with the lab results. They went into things a little deeper with us. They explained what all the prescriptions were for and gave us a timetable for being on each prescription.  Sounds like after about 3 months, all but 2 of them will go away. That will make life a little less hectic.  Right now she is on 7, well 6 now that she is off the pain meds. Two of them she takes once a day, thank goodness because she happens to hate those 2. Three of them she takes twice a day, and one of them she takes 4 times a day. When she was taking the pain med, she usually took that 3 times a day.  I had to make a chart so we could keep track of it all.  I had the chart with us at the appointment and pulled it out for the NP to see. She was very impressed with it and asked if she could make a copy. I wasn't out to impress anyone, just try to make my life easier.

Anyhow, they told us some things to watch out for, like white stool color, fever, and increased irritability because those are red flags that things might not be working right.  They want labs run every 2 weeks for a while. Luckily we will be able to get those done locally and just make a trip down there once a month for the next little while. If things continue to improve they will space the trips out a little more.

All in all, it was a good day. I had been pretty stressed wondering what labs would show, but so far the procedure is doing exactly what it is supposed to be doing so now we just need to keep it working.

After we finished up with the GI team, we headed downtown to grab some lunch before hitting the road again.  It was a long but good day. We were thrilled with the good, positive feedback. Hopefully things continue to improve and it is a long time before we have to do anything more extensive.

Again, we are so greatful for all the thoughts and prayers that have been offered on our behalf. They kept us going through all of this and will continue to keep us moving forward.

I am sure this blog won't get updated quite as often now, but I will update with anything new that comes along.

Bringing things into perspective

  I told Corey that I would like to write a post on Alivia's blog. Why I've had the urge to do this I don't know. When Corey first called me with the question asking if I wanted to make a trip to Primary Childrens the thought entered my head that our son had really hurt himself this time. This may have been a situation easier to deal with, but I don't know that for sure. Then her next words were Alivia is sick and we would need to meet with a specialist. The feelings that entered into my heart next were those of guilt. Thinking that I should have been there with my wife and baby.
   As things began to develop that afternoon panic began to set in. I just couldn't understand or even maybe just didn't want to know or realize that something could be wrong with our perfect little baby. By this time Corey had already heard from the Dr. and the nurse from Primary Childrens explaining to us what was going to happen when we arrived. Arrangments for our other 3 children were made, and bags were packed. Feeling something wasn't complete yet I went through bags and other belongings to make sure nothing was left. Then the missing piece entered my head our baby needed a blessing. As I made a few phone calls to make this happen I found myself rehearsing a blessing in my head. A good friend of ours came over and we blessed Alivia.
   Corey has kept you all informed about what has been happening with Alivia. I would like to share a few thoughts of how this has changed our whole family from my perspective. First of all it didn't take long for us to realize how precious tiny moments like little smiles, giggles, hugs, and funny little comments from heavenly fathers children really are. As we sat in the hospital for even the first few hours. I realized those things weren't present at the time. Next thing that really hit me was the phone calls and text from concerned family, Ward members, and people we associate in our little community. Everyone willing to help out in anyway that you would let them. Feeling a little prideful I just responed we are doing just fine. I read in a conference talk one time that it is our responsablity to accept service and charity when it is offered and needed. I began to let those help that offered and quickly began to feel a burden lifted from my mind.
    I would like also to talk about the power of the Lord. Through the duration of our stay at the hospital both Corey and I in the back of our minds knew that things were going to be just fine. The first couple of days during the testing and elimination process we were completely uncertain of things. We called our bishop in hopes for some answers. Once we knew what situation we were in we contacted our bishop again and asked if he would put together a fast for our baby girl. Without hesitation he began to make phone calls. I talked to him later that evening and he said word had been traveling fast most of the last people he contacted already knew about it. Its hard to sit here and write about the feelings I had when I heard this, but it made me realize the speed of which our Father in Heaven can act. I can't thank those people enough that fasted and prayed for Alivia. Your fast and prayers where well recieved. The gospel and priesthood have been such a blessing in our lives, especially in these last weeks.
    I would just like to thank my parents and Corey's parents for their support. A great big thanks to my aunt and uncle for opening their home to us while we were there. To the Copleys for all their help. Corey's sister Elissa. Our beloved bishop and his concern for our family. My uncle Neil. And very special thanks to all those who prayed for Alivia.
   I just want to close with a few thoughts of how this has taught me as a father. I now have a better understanding of why I have a family here on earth. As I look back on the short years that I have been a father I realize that I haven't always done this with the enthusiasm that it requires. My wife and children are by far the biggest blessing that I have recieved in my life. I can't tell you how many times I have lost my temper over things that in such a short amount of time have no affect on our lives at all. This event in our lives has proven to be more  of a blessing than tragedy. I have learned that I need to take those moments in life that are a test of faith and patients and use them to strengthen my testimony and faith in Father  in Heaven.
    Again I am so thankful for all those who helped when we needed it most.

We're outta here!

Sorry, I've missed a couple days of posting.  I know many of you are keeping track of us on here. Thank you for caring so much about us. We really appreciate the love and concern, the faith and prayers, the outpouring of service to us in this difficult time.  I want you all to know that we have felt and seen it in our lives while we have been down here.  We have had such a calm peaceful feeling nearly the whole time we've been here when it should have been stressful and nerve-wracking.

Alivia is doing amazingly well.  She has made so many improvements and done it so quickly. Her IVs are all removed, her drain is removed, and today the monitors will be gone.  She is eating well and keeping it down. She even doesn't mind the meds too much.  We had a little set back the day they switched her from the IV meds to oral.  Her poor little tummy had a hard time with everything that first day (Tuesday) so they had to back her off the formula for part of the day and just give her 1 oz of pedialyte every 2 hours for the rest of the day and through most of the night.  By the next day, she drank 2 oz half strength formula, and then moved on to 2 oz full strength and is now eating 3-4 oz full strength.

We thought we would be coming home with her incision drain, but yesterday evening, they removed that and sewed her little hole up so we don't have to deal with that either.  We'll probably just have to change the bandage for a couple of days.  She no longer has a bandage on her surgury incision. I'll have to post pics when I get home and have my camera cord. It is amazing.

Alivia is really starting to be herself again.  We were able to get her to give us some of those precious open-mouth smiles of hers, dimple and all.

We are getting to check out of our extremely expensive hotel today. We plan on staying at Aunti Kristine's house tonight (Thursday) before heading back home tomorrow, just in case. We would hate to get 4 hours away and discover any problems.  We are excited to see our other kiddos. We've missed them the last week and a half.

third day post op - Day 7

So last night after I posted, I got to hold my little angel before we went to bed for the night.  It was wonderful. This was the first time since I handed her over to the anesthesiologist on Friday. Man, I had missed holding and snuggling her.  I also forgot to post yesterday that Ryan was pretty sure he got a smile out of her.  I didn't get to see it so I guess I'll just have to work on getting one of my own.

She actually did really well during the night.  She had morphine at about 8 last night, again around 3 and then again about 6:30.  She slept better than I was expecting.

This morning, she was doing so good that they removed her catheter and she was able to eat .5 oz.  She has been fed through her IV since surgery. Poor thing thought she was starving.  Now I get to feed her every 3 hours increasing the amount by .5 oz each time.  So far she seems satified with that small amount. Of course anything is probably better than nothing.  I have held her several more times today and just enjoy snuggling her carefully and looking into those big bright eyes.

2nd day post op - Day 6

I'm sitting in the regular baby room typing this up.  That means that she is out of PICU.  Today has been great!

We got up and came in to the hospital this morning again.  We brought Kaylee with us.  We were able to just hang out with Alivia and Kaylee and Ryan and I. Alivia had a great night.  She had been breathing on her own since about 8:30 am so just before noon, they removed her breathing tube.  Taking out that tube really made a lot of difference with how she looked.  She had also had 2 bowel movements which was good progress as well.

She opened her eyes this morning.  That just made our day.  We spent about 2 hours with her this morning before headed back to Kristines for lunch.  It was such a positive morning.

About 430, the PICU nurse called to say that she was doing so well that she graduated and was moved to the regular baby room.  So we packed our stuff up and moved back up to the hospital.  Since we got up here, she has had her eyes open and was able to focus on us for a little while.

About 730 pm on 4/3/11, 2 days after surgery

She had been off pain meds all day until about 8 pm tonight.  She is just amazing to me. How she can go all day without pain meds 2 days after major surgery is just amazing.  Finally about 8 pm, she was in some pain so they gave her some morphine. Hopefully she has a good night.

Post Surgery - Day 5

So after surgery, she was taken to PICU, where we were able to visit, but not stay.  It was so hard to leave her for the night, but she was sedated and resting very comfortably.

Ryan's parents were here for the weekend so we visited Alivia for a few minutes after dinner and then headed to Aunt Kristine's house to stay the night.

Saturday morning, we headed up to the hospital with the kids.  We were told at first that there was an age restriction so the kids wouldn't be able to see her.  A few minutes later when Ryan was in visiting her, the nurse got an email saying that the age restriction has been lifted so we were able to mask them and take them in for a few minutes each. 

Ryan took Bo in and then I took Kaylee and Raegan in.  The nurse was VERY nice and explained what she was doing, what the tubes and stuff were for.  She was more than willing to answer any questions that the kids had.  I think it was really good for them to get to see her for a few minutes. You could tell that they really had been missing her this past week.  It was sweet to see them talk to her a little bit and just see the love that they have for their baby sister.

After we were done visiting, we headed downtown and took the kids on the TRAX train.  They just thought that was awesome. They had such a great time.  We made sure we left downtown about 15 minutes before General Conference got out so we didn't get stuck in the crowds.  We headed back to Kristine's for lunch and then went to Classic Fun Center where they have roller skating, bounce toys, a jungle, games, and some other stuff.  Again, the kids had a blast.  Bo played so hard he actually made himself puke.  Poor kid has his Dad's stomach I'm afraid.  My sister and neice met us over there so the kids could see them too.

As hard as it was to be away from Alivia for the day, it was good to get to spend the time with the other 3 kids.  We really did miss them and enjoyed our time with them.

We headed back up to the hospital about 8 pm to see her for a little while again.  We took Ryan's parents and sister with us so they could see her once more before they headed back home.  She was a little more responsive. They had reduced her pain meds a little.  You could actually touch the bottom of her foot and she would curl her little toes. It must have tickled.  It was just something little, but sure made our day.

All in all, it was a very good day for all of us. We needed to have a day like that.

Surgery Day - Day 4

Friday was surgery day.  Alivia had to fast from 4 am until 11:30 when the surgery was supposed to start.  We were a little worried about that because she really didn't like fasting that first day when she had to do it for 4 hours.  I think all the prayers and fasting played a big part in the fact that she was so very calm the whole time we were waiting for the surgical team to come get her.  Both Ryan and I were so calm and at peace all day as well.

We just spent the morning snuggling our baby girl and spending time together. We went for a walk around the hospital and just enjoyed being together.

Finally, they came to get us at 12:30 to take her down to prep her.  We went down and the anestheisiologist explained what he would be doing and then led us down the hall to the doors of the surgical unit.  It was so tough handing her over to him so he could take her the rest of the way in. 

We headed to the waiting room for what was going to be a long 4-5 hours.  Amazingly, the time went really fast.  They would call the waiting room and give us updates every couple hours, which was great.  After our 2nd update, we took a little walk and ended up on the 3rd floor deck.  It was a beautiful sunny day and we were all alone up there.  We sure enjoyed the sunshine and it was just so calming.

We made sure that we were back in the waiting room for the next update.  While we were sitting there waiting, a surgeon came in to visit with another family that was waiting there.  He pulled them into a consultation room that was just down the hall.  A few minutes later, we could just hear the mother sobbing.  It was so heartbreaking to hear that.  About 20 minutes later, we got our call that they were just finishing up, were closing up, and that the surgery went very well.  The surgeon came out after he was finished and talked to us and let us know it was exactly how he suspected it would be and that he felt everything went very well.  We were so happy to hear that.  He then walked us to the PICU waiting room.

While we were in the PICU waiting room, Ryan's parents and our kids got there.  We were pretty excited to see our other 3 kids too.  It has been hard on all of us being apart while this has been happening.  About 6:30, we were finally able to get in to see her.  It was hard to see her hooked up to all the monitors and everything, but she looked really good.  We weren't able to stay long because it was right before shift change, but it was long enough to make us feel really comforted.

After we were able to see her, we went and ended our fast by going to pizza with the kids and Ryan's parents. Afterwards, we headed back up to say good night to our sweet baby girl.  She was very sedated, but while Ryan was in there, she actually would open her eyes a bit when he talked to her.  What a blessing!

Then we had to leave the hospital to go to Aunt Kristine's for the night since we can't stay at the hospital while she's in ICU.  That was hard leaving her there again.  But we both were able to sleep in a real bed and we both slept really well knowing that everything went as good as it possibly could that day.

Waiting - Day 3

Thursday, we had a very laid back day. There were no major tests or really anything scheduled for that day so we got to relax and enjoy the day.

My sister, Elissa, came and visited and actually got me out. We went to Walmart to pick up a few things that we will need with our extended stay here.  And we went to lunch.  It was good to get out and we actually had a lot of fun hanging out for a couple hours.  It has been a long time since we've been able to do that.   

We were able to get a stoller and take Alivia for a walk around the hospital.  It was a beautiful day down here in SLC. We went and spent a little time out on the roof sitting area outside and we visited the garden area down at the main enterence.  It did a lot for our spirits to be able to get out and get some good sunshine.

In the afternoon, the surgeon came in the visit with us and explain in a bit more detail the Kasai procedure that he would be doing.  He was very straight forward and honest with us.  He also showed a lot of confidence.  Ryan and I both agree that he helped to make us feel even more peace about what is happening and about the surgery.

We again talked to a lot of family and friends. We are so blessed to have so many of both family and friends in our lives.  They are just stepping right up and taking care of what needs to be taken care of at home.  We are thankful that we were able to call on them to take our kids in an instant.  We know we are loved and are being prayed for and our other kids are being watched out for while we are gone.  Again, the feeling of peace.

We went down to the cafeteria last night to eat dinner. While down there, we ran into an old high school friend and his parents. He has a son that has been here for a while.  It was nice to see some familiar friendly faces. We sat and had a good visit with them for a while.

It was a good day.

The tears still come unexpectedly, but like I said, we are at peace with what is happening. Besides, we have it in good word, that we can handle this.  We won't be given more than we can handle. It will be a struggle....it already has been this week, but we'll get through it and we'll continue to have faith and move forward with life and whatever challenges are ahead for us.

Alivia's surgery is scheduled for 11:30 Friday so please remember us in your prayers and I will update this when I can.  Again, thank you to everyone that has been praying and showing support to us. We love you all!

The diagnosis- Day 2

So since the tests and ultrasound from Tuesday were kindof inconclusive, a biopsy of her liver was ordred for Wednesday morning.  She had also kicked her IV out from the day before so she was so lucky as to have that procedure done again.

About 9:30, they came and got us for the biopsy. We went down with her and talked to the doctor who would be doing it. He thoroughly explained what he would be doing and what they would be looking for with the biopsy.  They started to put her under so we left for 20 or so minutes that it took to do.

The rest of the day was spent waiting for anything, any news.  We were told the final biopsy results likely would not be in until the next day, but that they would look at it that day and come up a preliminary result.

Well, later that afternoon, Dr. Guthrey did come in and tell us that based on what they preliminary biopsy is showing he is quite sure we are looking at the Biliary Atresia.  He had already talked with the surgeon and scheduled an OR for Friday.  We were a little, actually a lot overwhelmed at this point.  We had gone from wondering why our baby was kindof yellow to major surgery within 3 days.

There were tears. There were a lot of tears. There was turmoil. And there were prayers...ALOT of prayers too. Then there was peace.  We started letting family and friends know what the diagnosis was and what has to be done about it.

I think the hardest part was not knowing what was wrong...and then KNOWING what is wrong.  We basically ended up with the worse case scenerio in this situation.  It is gonna be a long hard journey for our family.  It could possibly require some changes...hopefully not, but it is quite possible.  It is gonna require a lot of faith and patience and help.  BUT we do have the faith and help....we'll have to work on the patience I'm sure.

The trip - Day 1

We arrived in SLC that night about 11 pm.

The next morning we got up and headed to the hospital.  We got checked in and they put us right into a room.  The Dr. Guthrey came in and met us and explained the tests that would be run and what they were looking for and what some of the possibilities could be.  He explained it could be anything from an infection to swelling to something more serious called biliary atresia which would require surgery.

Alivia did really well with everything.  She didn't like the IV being inserted.  She just seemed a little annoyed with the monitor cords hanging off her.  They came and drew blood and then she was required to fast for 4 hours before having the ultrasound.  She was ticked off that we couldn't feed her and was thrilled when they let us feed her during the ultrasound.  Later that evening, Dr Guthrey came in and told us that the tests and ultrasound were not really difinitive, but they were suspecting that it was biliary atresia.  They ordered a biopsy of her liver for the next morning.

Biliary Atresia

What is Biliary Atresia?

 Biliary Atresia is a serious disease that occurs in young infants. It results in inflammation and obstruction of the ducts which carry bile from the liver into the intestine. Since bile cannot flow normally, it backs up in the liver. this results in jaundice, or a yellowing of the skin, and causes cirrhosis, in wich healthy liver cells are dstroyed and replaced with scar tissue. The scarring interferes with blood flow through the liver, causing more cell damage and scarring.

The cause of biliary atresia has not yet been discovered. It affects approximately one infant in every 15,000 live births. It is not known to be a hereditary condition.  It also is not caused by anything done by a parent or sibling.

What is treatment for biliary atresia?

There is no cure for biliary atresia. The most successful treatment for biliary atresia to date is a type of surgery that allows drainage of bile from the liver when the ducts have become completely obstructed.  This operation is called the Kasai procedure.

In the Kasai procedure, the surgeon removes the damaged ducts outside of the liver and replaces them with a length of the baby's own intestine, which acts as a new duct.

The aim of the Kasai is to allow excetion of bile from the liver into the intestine via the new duct. The operation accomplishes this about 50 percent of the time.  In the other 50 percent, the problem lies in the fact that the obstructed ducts are inside the liver.  There has been no procedure developed to correct this condition other than liver transplant.

About 2/3 of the patients who are diagnosed and have this operation will go on to require a liver transplant by the age of 20. Depending on the success of the operation and how well the recovery goes will determine the amount of time until a transplant is required.  The other 1/3 essentially get a transplant at some point later in life.


Will there ever be a cure?

There cannot be a cure until a cause is known.  Research is the key to solving the mystery.


All of the above info was provided in a pamplet put out by the American Liver Foundation.  For more info, visit their site at liverfoundation.org.


What this all means for our family:

We don't know at this point.  We know that she will have this surgery and that we will have to plan on a tranplant at some unknown point in her life.