Thursday, July 31, 2008

Keep Praying for Eden

First, I want to thank all of you who have offered your support and prayers for Eden over these past few weeks. We went for her post-op visit with the surgeon today. He said her incision is healing up nicely and in that respect she looks good. However, her stool is still looking pale and although there is some bile in it, it is not where he would like it to be. He said he is not placing her in the category of no this is not working but, rather let’s hope and pray that this does work. Otherwise, she will need a liver transplant by the time she is one.

So I am asking you to continue to pray for Eden’s health. Also, I would like to invite you to join us in prayer and fasting this Sunday on Eden’s behalf because although Eden is in the care of skilled and knowledgeable doctors and nurses, ultimately it is prayer and faith that will make the difference here. One of my favorite scriptures has always been Proverbs chapter 3 versus 5 and 6,

“Trust in the Lord with all thine heart and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.”

I suppose everything that we have been going through is another reminder to me that I am not in charge here. Although I can care for my baby and give her medications, it is not I who can heal her. So I will continue to do what I can for her, but I am putting my trust in the Lord, the great healer of us all.

I am grateful for the opportunity that I have been given to be the mother of my three children. Despite all the trials motherhood brings, it also brings great joy and, I feel truly blessed to be called Mom.

Wednesday, July 30, 2008

9 Windmills

video

First time I have seen all 9 going.

Sunday, July 27, 2008

Kids

This was back on July 7th. The boys got under the baby gym with Eden and so it was a perfect oppertunity for Erica to take pictures.

67 Pounds of Glass




So this morning about 15 minutes before church the boys were playing around and Grandma Lai told them to quiet down and to stop throwing things. Ethan went to the bathroom and Seth threw a purple rock he got from a rockshow in the house. It went sailing and found the sweet spot on the glass on the dining room table cause the next thing I hear is glass shattering for several minutes. Thankfully no one was hurt. We just had 67 pounds of glass everywhere. I started with the shopvac but it didn't work on the large pieces so i got out the old broom. Glass was all over the dining room, kitchen, living room, in the sliding door, and even down to the bottom of the basement stairs. It took a good hour and a half to clean up. So needless to say I missed most of church. Luckily just sent the boys off with Grandma Lai and aunt Yvonne. Well hopefully they have learned a lesson. We will not be replacing the glass. I think just keep table cloth and some placemats on top. Maybe cut some cardboard and stick under to protect it somewhat.

I got lonely in my bed so...

Last night we went to go check on the boys when we went to bed and this is what we found. Ethan had snuggled up to Seth in his bed, and decided to share a pillow. Thought it was pretty cute so we had to post it. Later when Erica checked again Seth was holding Ethan's Leg. At least they get in each other's beds and not come out to mommy and daddy's.

Wednesday, July 23, 2008

We Are Home !!!!

Yeah!!!!!!!!!!!!!

We are on our way

It is 2:38 and we are leaving!!!

Wall of Poop


Tuesday, July 22, 2008

Going Home Tomorrow....

So I lied we will be home tomorrow. They wanted to finish off her IV steroid here tonight. Which is good because I had today to get some of my questions answered and learn how to care for her PIC line. I'll keep you posted.

Going Home

So they say Eden will be able to go home today. Since she is eating well and is healing up just fine there is no need to keep her here anymore. I am sure we will back up here plenty for checkups, but it will be nice not to have to do the hour long drive both ways every day.
I don't think we will be home until later today because they are still weaning her off of her IV steroids and TPN. Plus I have tons of questions to ask the Dr s before we go home, and I have to figure out how to take care of her PIC line, but I am looking forward to life settling down a little bit.

Monday, July 21, 2008

Doing Well

Eden is doing well and is much happier now that they are increasing her feeds. By midnight tonight they will let her start eating on demand. If she continues to do well we may be able to take her home a little sooner than we expected. We still have a long road ahead of us, but things are looking up. Thank you for all of your prayers and support.

Comments

Comments are one thing that keep us going throughout the day while we are up at Primary Childrens. It is great to hear from you, and see your support. Our blog is open to comments, you don't have to have a Google account or a Blogspot page. Just click on comments and you can leave one, after any blog. I know many are keeping tabs on us, it would be nice to know who. So please leave a comment. Just make sure to leave your name at the end of it or send an email to Eden.
edenelai@gmail.com it gets forwarded to both of us, and might be nice for her to have later once all this is over.

The Lais

A good night sleep!


Went to bed around 10 and got up about 7:30 this morning. We're watching tv now and happy for the most part. Eden was hardly up last night. Just when the nurses came to do their checks and to feed her. She has had some more bowel movements, we will take a picture of the poop wall.

Sunday, July 20, 2008

New Room


Well I thanks for all the prayers and support. We got a private room. Luckily we still cell phone service, but it means Erica will have to go upstairs to pump. At least tonight when alarms go off and i hear crying I will know right who it is. I won't have to use ear plugs at night which is good cause Seth picked one up thinking they were fruit snacks.

We are in Room 3012.

And will continue to update.

New Roomate


Well this morning we got a new roommate. A 2 day old girl from Blackfoot, ID. She was born with Spineobifida, it was not discovered at all before she was born. She is pretty quiet which is nice. Her dad and grandpa are with her and then her mom will be here today.

I did ask the charge nurse about a private room and she put our name on a list. Today has been good so far. Eden likes to get her drink every 3 hours. One of the surgeons came in and said at noon she could actually have some milk. I am sure she is going to be so happy.

Saturday, July 19, 2008

Asleep

Went down to get a bowl of soup, and a couple of snacks and came back and Eden had fallen asleep on her own. Just before she had received her 5ml of pedialite. So it must have been enough to hold her over for a while. Looking forward to hopefully a rather quiet night and a couple of good nap sessions.

Daddy's Back


Daddy came up to relieve mom. She didn't get much sleep all the monitors going off in the night, and babies crying. Eden finally took a bit of a nap, and mom headed home to the boys, who were being watched by Uncle jeff. Hopefully she can still recognize the house when she gets back.

Eden has pooped again it looks like blood clot still. Today she has been able to get some Pedialite though which she like but only a teaspoon which is 5ml. So really it is just a tease. So resort to just wetting her binky and giving her mouth sponges that she can suck on a bit and get some water. Tonight she have have 10ml though which I am sure she will love.

The couple we have been sharing a room with leave here in a hour and things will be a bit quieter with only one baby and monitors. maybe I can bribe the nurses into not letting anyone else in so we can get a bit more peace and rest over the next 10 days or so. For now just content to have taken their rocking chair once they left.




Friday, July 18, 2008

Poop

You never thought a couple could be so excited about poop but we are!

Bath and a Bow

Mommy and the nurse gave me a bath. So now I look all pretty but then I started getting mad. So the nurses have brought some morphine.

Got that tube out!

Dr. Scaiff just came in and said that we could take out the tube in the nose, so Eden is a little happier. Her heartrate has been dropping a bit below 80 this morning, he said it happens often and it is associated with being on the pain medicine. She also has some thrush in her mouth from all of the antibiotics.

New Day, Long Night


Well our first day in our new room has gone well, although at night was a different story at least for dad. As we are sharing a room, so spent half the night wondering if it was Eden or Thrill the boy on the other side. Once Eden got some more morphine she has been better. I am sure that she has been hurting inside. It has been good to sit and hold her, but she tiers after a little while. Eden is more awake today, and has her voice back.

Thursday, July 17, 2008

Moving on up


We will be out of PICU in about 30 min. We will be in room 4328. The hospital phone is 662-1000. Eden is doing well and has woken up a bit so mommy can hold her.

July 17



Well things have gone well this morning. Eden was able to have her breathing tube taken out as well as the artillery line and catheter. So she just has a pic line in the left arm and a nasal tube to suck out anything in her stomach. Soon she will be able to get some TPN which will be more nourishing than the IV. She woke up for a while, when being worked on but is content to just go back to sleep. She has a hoarse voice and was not able to really cry after having the breathing tube in for a long time.

The hopeful plan is that she does well enough on her own today, so she can be transfered to the floor and doesn't have to stay in PICU. We will see.

Wednesday, July 16, 2008

In the PICU


Well Eden is now in the Pediatric ICU and will be there for a day or two. Her breathing tube will probably come out in a hour once she wakes up a little more she is still kind of out of it. But she opens her eyes occasionally. We are so glad that things went smoothly. Thanks for all the prayers and support. We will still have to wait a while to see if her stool goes to a green or brown color to know if the procedure has worked and the bile is flowing from the liver out.
More updates to come.

Update

The Surgeon came and talked with us the procedure is done, and just finishing up. She should be down to the Pediatric ICU in 20 min or so and we can go see her. :)

The doctors have called and they could not find any traces of any ducts for bile to drain. So they are going ahead with the Kasai procedure it will be another 4 hours or so. Update again soon. Thanks for all the calls and prayers and support for Eden.

Kasai Procedure

This procedure is named after Dr. Morio Kasai, the Japanese surgeon who developed it in 1951. You might also hear your health care provider refer to it as a "Roux-en-Y" or a "hepatoportojejunostomy" (pronounced "he-pat-o-port-o-jeh-joo-nah-sto-me").

The liver has ducts, so that the bile it produces can drain into the intestine and help with digestion of food. If these ducts are blocked, the Kasai procedure is a way to surgically bypass them and prevent liver damage. It is often the preferred treatment for biliary atresia.

To perform the Kasai procedure, surgeons first carefully remove the damaged ducts outside of the liver. They use a small segment of the patient's own intestine to replace the ducts at the spot where bile is expected to drain. This segment not only connects to the liver, but also connects to the rest of the intestine. The Y-shaped passageway formed by the Kasai procedure allows bile to flow from the liver into the intestine.

Tuesday, July 15, 2008

Birth Annoucement


Our friend Jen Wight does cute announcements. She does a lot of digital scrapbooking and looking for some extra work. jmw319@gmail.com

Update on Eden

So we are scheduled for surgery tomorrow. They are first going to see if Eden has any kind of bile duct and if she does they will just stop the procedure there. If not, the will try to create a duct using part of her intestine. Hopefully they will be able to find something so that it won't come to that. We will let you know how things go after tomorrow.

Birthdays

Saturday, July 12, 2008

Biliary Atresia???

So I took Eden in for her two month check up on Tuesday, and she is growing well but after the Dr had a look at her he said she was still looking jaundiced. Which looking back she is a little yellowish and her eyes have never been white, but I just thought it was part of newborn jaundice and her coloring would slowly get better. But I guess at two months old it should already be better. So he sent me to the hospital to have her bilirubin and liver enzyme levels checked and told me to call back the next day to get the results. Well he called me early that evening saying that her levels were unusually high and that he had talked to a pediatric gastroenterologist at Primary Children's Hospital and he wanted me to take her in to have an ultrasound done on her liver and abdomen the next day. So the ultrasound showed that her liver looked ok but they couldn't find her gallbladder. Just not there or hiding we don't know. So we met with the gastroenterologist yesterday and she ordered a bunch of tests including one on Monday that they will have to put her to sleep for, but it should give us a better idea of what is going on. The Dr thinks it might be biliary atresia. Which means that the bile duct leading from her liver to intestines is either blocked or didn't develop. If that is the case they will have to do surgery to reconnect it. We will see on Monday I guess.
To top it all off the Dr also head a slight heart murmur and she has a herniated belly button. Which I guess are mild compared to everything else that is going on.
I will keep you posted when we find out more.