All In Good Time

Carter had a bit of a rough day with a happy ending. His IV went bad (his nourishment and fluids), and because they'd tried to get another one started yesterday without success, they'd used up most of his IV veins. The few left for the nurses to try today didn't work, either. After 8 attempts yesterday and 3 today, they gave up. They called Dr. Schropp to find out what to do--the only option was for him to cut his leg and put in a more permanent IV of some kind. But wise Dr. Schropp said, "No, I don't want to do that. Why don't we just start feeding him!" Which is what I'd been saying all along--
So, back to Pedialyte. But his blood sugar dropped because he wasn't getting enough sugar and calories. They called the Dr. again. "Try giving him breastmilk" he said. Brilliant! So, now our handsome little boy is officially eating!!!! They say he's not out of the clear yet because he still has quite a bit of fluid draining from his abdomen, but he's keeping the milk down and the leaking fluid is not coming out milky (meaning all intestines and everything seem to be sewn together well).
They have a family room available, so I (Sarah) am going back down to stay the night. Gary gets off work soon, and will hopefully come to stay, too.
Pictures of our little man today:










See the difference in his color? The doctors and nurses are astonished at the difference--Dr. Schropp says he doesn't even look jaundiced anymore!
We want to say thank you to all of you for keeping us, especially Carter, in your thoughts and prayers. It's easy to believe in healing and answered prayers when it's some far off theory, but when you depend on God's miracles for the most important thing in your entire life, it becomes much easier to doubt and worry. Your prayers and petitions to God have saved our son's life. It's hard to imagine going through all of this without the love and support of our friends, family, and even strangers who have heard about Carter. You are our blessings, and we will praise God always for you! Your comments and emails keep us positive and lift us up, and just knowing you read this because you care about our little angel encourages us. Thank you!!

One Step Forward, Two Steps Back

Well, today has been one of those rollercoaster days. We were so excited to be able to feed him. He got his first serving at 11 a.m.--1/2 ounce of pedialyte every 3 hours. That little piggy gobbled it down in under a minute! It only made him hungry for more, so he was a big fussy. He got his second helping at 2 p.m., and again, GULP! and it was gone!! Mommy and Daddy went home after that to rest. Dad had to go to work, and Mom had a horrible headache.
When I (Sarah) got back at 8 tonight here is what I learned:
Carter had to go NPO (no food) again because of an increase in fluid draining from his abdomen. --They aren't certain of the cause, but since the only thing that had changed is that he got the pedialyte, they stopped it and are waiting until Sunday to hear from Dr. Schropp.
--The day nurse, Nancy, was afraid that his IV would go bad, so she tried to find a new spot. At least 4 attempts in my baby's head, and who knows where else failed. His original IV is still good, so that seems like a lot of pokes to a baby for no reason to me. I know she was just trying to be helpful, but OUCH!
Anyhow, I got to hold him and rock him for over 2 hours tonight, and he was just so happy. This little boy is so strong and sweet. I'm learning a lot about God's grace. There's a song by Caedmon's Call that says "my faith is like shifting sand, changed by every wave; my faith is like shifting sand so I stand on grace." I was singing this song to Carter tonight, and it struck me how easy it is to give God praise and commend myself for my relationship with Him when everything is going well. Then watch my faith falter when the waves come in. The last part of the song says "Waters rose as my doubts rained. Sandcastle faith has slipped away. Found myself standing on Your grace. It'd been there all the time." Sometimes when everything else fades away, or crumbles, we look down and find ourselves standing on the platform of God's grace. He is our stability, our rock, and our steadfastness. Let our little boy's amazing story remind you that the crashing waves and pelting rain of the world is NO MATCH for God's great love--He's the calm in the storm!!

Pedialyte Delight

Carter got his tube out of his stomach today! That means that tomorrow (Saturday) he gets to have some pedialyte--then, if that goes well, Sunday he can have a regular bottle! Hooray!
He had such a good day today. He got morphine at 7 a.m., slept most of the morning, and was awake and cheery from 3 p.m. until we left at 11:30! His Grandma, Aunt Sherry, and Aunt Annetta came to visit, as well as his Grammie. He was wide eyed as can be! The doctors say everything is looking good. We think they are quite surprised by his progress. Everytime Dr. Schropp comes to see him he exclaims "Wow!" Today, his skin looked nearly normal in color, and even the whites of his eyes looked pretty good. His poop is still dark, too! His liver function numbers are still high, but the way he looks is proof of God's healing! Keep reading and praying--it is working! Thank you all!
Oh, PS--there is a little boy about Carter's age and size in the NICU. He is pretty fussy most of the time and we've never seen anyone visit him. It breaks our hearts to see this little boy sick and without love. Pray for this little boy--his name is Preston.

We Have Poop!

O.K. so it's not the most charming title. But it does kind of sum up good news for today. Carter pooped! That's right, one of the things we have been waiting for after surgery was to see some poop in his ostomy bag. Late morning, Carter was very uncomfortable and fussy. After awhile, the doctor came over, looked at his bag, and said, "Is that poop?" Sure enough, there were two little dark green nuggets! We've never had green stool, so we were a bit shocked. Green is a good sign: it hopefully means that there is bile there (a sign that the Kasai was successful!). Only time will tell, but this is a very promising sign!! Praise God!!
Late in the afternoon, Daddy got back from work and Grammie and Becca came to visit. Mommy got to hold Carter, and boy, was he in a good mood! The first time all week he seemed like his usual, cheerful self--he was smiling and looking around, and even making some happy noises! It was a wonderful time!
The brain scan came back normal, so Carter is just as smart and sharp as can be. And, just as good, the pediatric cardiologist came to listen to his heart and observe his "murmur"--he is a very smart doctor and said with certainty that the sound we heard was simply the swoosh of the blood flowing to the lungs--nothing at all to be worried about!
The fluid in his abdomen is draining like crazy out a tube. It fills up vile after vile, cleansing Carter's body. This is especially healing for us because last week at church, the worship leader was praying for healing. He prayed for someone who had a blockage--for release and flow--man, did God hear that!!
The prayers and thoughts are paying off far more than we could have imagined! We know we are not completely in the clear yet, but it all looks so hopeful. We just keep getting good news, and every obstacle is practically disappearing before our eyes! God is so good, and we know He is at work here. We are already seeing so many people growing closer to Him and giving Him credit for Carter's health. We look for even more improvement each day--thanks for checking in on our little boy!

Our Little Fighter

Another long day spent at the hospital...but a good day. Carter rested most of the day, although he only had a dose of morphine at 9 AM and then again at 5:30 PM. He sure is tough! He had several visitors--Grandpa Gerald, Grammie, Grandma Cheryl, and Aunt Annetta all stopped by to see him.
It's too early to tell if the kasai was a success. His bilirubin level today is 11.6, and although that's high, it's a little berserk due to surgery. We'll watch to see what it does in the next few days and weeks. Carter is a bit hungry when he wakes up, but he can't eat for a few more days at least, as his bowels have shut down from the surgery.
Carter has been growing and gaining weight like a champ over the past few weeks! Tonight he weighed in at 9 lbs. 5.5 oz!! We aren't sure this is exactly right--that's about a pound in the last day--but at least we know he's growing!
His incision looks great. It's about 6 inches and goes from the lower right side curving up to the middle of his belly. We will add pictures tomorrow.
Mom and Dad are going to bed in our plush Holiday Inn room--thanks Uncle Dustin!!! We love you all and hope to be able to keep bringing you good news!

Mommie and Daddy are busy keeping watch at the hospital so Grammie (Grandma Canaday) is getting to share the good news with you. Carter had surgery today and we have much to report.

First - before they did the actual surgery they did a scope of his esphogus to determine what damage there might be after they observed irregularities during the CT Scan last week. There were some abnormality but nothing as bad as what was observed before.

Carter is blessed to have the finest doctors and team taking care of him. Dr. Shroup did lots of research this weekend preparing for surgery but didn't find another case just like Carter's. So he explained to Gary and Sarah that he would determine exactly what he would do once he got in. But the plan was a Kasai procedure

When he got into the surgery he found that Carter had several issues. His internal organs weren't laid out as normal - his large intestine was on one side and his small was on the other. He rearranged as best he could but it meant that he would have to do the Kasai a bit differently.

Carter also had several spleens. Dr. Shroup did find one that was working well and removed the others.

As suspected Carter did not have a gall bladder and he had no bile ducts. Dr. Shroup did the Kasai procedure and feels that it was VERY successful. He won't know for sure until a couple of weeks have passed and they get bilirubin levels that remain constant or drop. IF that happens there is a very good chance that Carter won't require a liver transplant.

We have lots to be thankful for today. It appears that healing has been happening which can only be through God. We thank you for all your prayers and I ask that you continue to keep Carter, Gary and Sarah in your prayers. Carter will remain in the hospital for a while. He can't have anything in his intestines for a few days (they are a bit traumatized with all of this) and he can't go home until he's able to eat. Before I left the hospital I got to go back to see him in the NICU and he looked fantastic for all he's been through but he does have some more battles.

May God bless you as he has blessed us,
Ruth

What We Know:

Hello everyone! It's Saturday, and a lovely Saturday indeed. We hope you all get to get out and enjoy the day! We plan to do just that, as our little man will soon be stuck in the hospital for a bit.
Dr. Schropp called Friday. You could tell this was the kind of call he did not want to make. He said the biopsy showed no signs of hepatitis (or liver disease), so it wasn't a problem with the organ itself. He said it identified the problem as "extrahepatic bile duct obstruction"--in other words, the problem lies in the large ducts that carry bile away from the liver. What kind of problem cannot be identified by biopsy, so we aren't sure if it's biliary atresia (where the ducts shrink up and wither away) or if there is blockage, or if perhaps he wasn't born with them or they aren't attached or something.
Either way, he needs to do the Kasai procedure immediately to try to get bile out of the liver. He says there is already great damage and some cirrosis (permanent scarring) to the liver. They believe about 6 months worth, meaning it was already happening when I was about 4 months pregnant. This procedure, if successful, will probably only buy us some time before he needs a transplant. Right now we are trying to focus on this surgery, which will happen Monday. We go at 8 AM, and we'll visit with the doctors first. They want to take a good look at the ducts, liver, esophagus, spleen, kidneys, etc. to check for other damage, missing parts, abnormalities, etc. Then they'll do the kasai, so it will probably be a long surgery.
We have been so blessed through all of this. Gary's work is taking such good care of him and his hours. Dustin's hotel is helping us with a room for the week, so we will only be less than 10 minutes away from him. It's amazing how kind and caring everyone is. Times like this really make you see the good in people. Thank you for your prayers and concern for Carter.
Right now we are playing and he is smiling and laughing and making this really cool noise with his tongue. These are the best times a mommy and daddy could ask for. We know that he will have some serious recovery, and perhaps some sick days ahead of him, but God is in control, and we are continuing to trust in Him!

Smiles and Giggles

Carter was full of smiles today! He is really starting to respond to play. He becomes grouchy when Daddy gets home if he is not the sole recipient of his attention (he sure does love his Dad!).
We heard from the doctor today. Basically, they have the preliminary results of the biopsy, but they wanted to check with one more test, and that should be finished tonight. We will talk to the surgeon tomorrow, but we are on for surgery Monday (April 24th). We won't know until tomorrow what exactly will happen Monday.
His symptoms seem to be getting worse. The right side of his abdomen is fairly enlarged at this point. He is quite yellow and shiny today. It is difficult to see the signs on our innocent little baby, but we are so thankful that the doctors at KUMed have been watching him so closely. They haven't missed a beat, and that brings us peace.
We removed the dressing on his biopsy incision tonight. It is about an inch long, but looks good. He'll soon have more scars, but hey, chics dig scars, right?? :)

We got his 1 month pictures taken:

Tuesdays With Carter

We are home! We got to leave at about 4 PM, and it is so nice to be in our own place, where he is relaxed and comfortable. We are awaiting the results of the biopsy and the final news from the CT scan. We heard from Dr. Ashcraft, who works with Dr. Schropp, before we left. The CT showed several things:
It appears that Carter's liver is pretty normal structurally, which means that all the bulges and gnarliness is from quite a bit of damage and scarring (cirrosis). This means that the liver is already in poor shape. There is some damage to the lower part of the esophagus, the spleen is enlarged, and there is an increasing amount of fluid in the abdomen. There appears to be no gallbladder. All of this is in line with effects of biliary atresia. This is all PRELIMINARY, as we haven't heard from Dr. Schropp, but we plan on having the Kasai procedure Monday. Those other things (spleen, esophagus, etc.) will have to be dealt with in time, and we don't know what the damaged liver means yet.
This all sounds very serious and scary, and we hate to just lay it all out there, but there's no use sugar coating it. We are trusting God in all of this, although we have our fair share of questions, anger, and pain. Our little boy has a long road ahead of him, and your prayers will be needed for quite some time.
Here's a picture of our little hero we took after we got home. As you can see he looks like a happy little baby. We think he's stronger than the both of us combined.

Monday Update

Well, today was a very long day. We arrived at KUMed at 6 a.m. We had to do all the pre-op stuff, then Carter went into surgery at 8. After nearly 2 hours, the Dr. came to talk with us. Here's the report:
He performed the liver biopsy. We should have the preliminary result in a day or two. The liver is "very abnormal," meaning that while most of our livers are similar to a piece of meat (as in liver meat), Carter's seems to be a blob on top of a blob on top of a blob. Not smooth, but gnarled and tough. It could just be an abnormally formed liver, but most likely it is this way because of advanced damage. He had a liver transplant guy come look at it, and he said there's no way that could have all happened since birth, so it must have been being damaged in the womb. This would be inconsistent with biliary atresia. He also saw what might be a gallbladder, although it was in the wrong spot and didn't look like a normal gallbladder. He also saw some bile ducts that might be functioning, but we cannot know for sure. So, to sum up, they are now even more confused than ever. It doesn't seem like biliary atresia, but if it's not, they don't know what it is or what to do with it. Either way, they've got to fix it somehow. So, no real answers yet.
Mom and Dad went home at 10 PM to get some sleep. Our first time ever leaving Carter. He'd had a rough day, but by the time we left he had eaten well and was in a good mood, making faces and talking to Daddy. We will go back early in the morning, and Carter will have a CT Scan. He will have to be sedated so he'll lie still. He has a Kasai procedure tentatively set for next Monday, depending on the results of the biopsy.
Thank you for praying. We felt those prayers all day long, and we know God is working on answering them. A woman in the holding area told a nurse to tell us she saw our baby and is praying for him. Our surgeon told us that he knows prayer does a far better job than his hands could ever do, so we are sure God is at work!!
God bless you all!

By His Stripes

It is almost 4:30 Monday morning and I thought I would post this thought as we will not be home for a couple of days. I keep thinking Isaiah 53:5 that says by His stripes we are healed. It's pretty amazing to think that Jesus would take the punishment He did to not only have our sins forgiven but to bring us healing. I just want everyone to know who has been supporting and praying for us how much it has strengthened the faith of Sarah and I. It has interestingly made us believe even more in the power of God. So from Carter, Sarah and Gary, thank you all for lifting us up and we hope to soon give everyone a good report.

Happy Easter!!

Today has been quite a busy day. We went to church to celebrate our Risen Savior, and then we had several visitors all afternoon. Grandpa and Grandma Linda came, then Aunt Faith and Cousin Morgan, and finally Grandma, Aunt Sherry, and Aunt Annetta. They even brought dinner--ham, potatoes, green bean casserole....Yummy!
Tomorrow is our big day. Carter cannot eat anything after midnight, so we might be up super early with an unhappy and very hungry baby. But we leave for the hospital before 6 AM, so we'll all survive. The surgery is scheduled for 7:30. We'll meet with Dr. Schropp and also with the anesthesiologist before. The plan is to do the liver biopsy, but there's the chance of the Kasai procedure, so we don't know if it will be an hour or 7. Either way, we know we have probably hundreds of people praying for our little man. It is an amazing feeling, being surrounded by prayer. I know there are people we've never even met praying for us. Thank you to each of you who love and care about our son enough to lift him up to the Father.

Saturday with Mom

Dad is writing this but Carter spent most of the day with Mom and it sounds like they had a great day.
In the morning, Mom and Carter went to an Easter egg hunt at the 2nd Baptist Church in Liberty. They came to visit me for lunch at work today and we had a minor spit-up delay. But thanks to the proactive genius that is Mom, he had an extra change of clothes and plenty of baby wipes. Of course I always enjoy showing him off at work and he always catches all of the ladies eyes. When I got home from work he was wide awake and just talking away with his Aunt Becca and Mom. O.K. "cooing", I guess, is the appropriate terminology.
Tonight he went to sleep with his head in the palm of my hand and it was perfect. I am so glad that the one directly being affected by this situation also seems to have the most peace. But then again, Jesus is the Prince of Peace. So what else should we expect?

This is our beautiful little boy! He was born on March 9, 2006 at 9:43 AM, although we think he'd like to have stayed inside his mommy's belly forever! After 27 hours of labor (3 hours pushing), we ended up bringing him into the world by c-section. He weighed 7 pounds 1 ounce and was 19.6 inches long.
Carter Maxwell is our joy and our delight. He's only been in our lives a little over a month now, but we cannot imagine life without him.
He is a sweet baby--content and happy most all the time. He sleps well at night, sometimes waking up to coo and tell us stories!
At one month, he weighs 7 1/2 pounds, so he's beginning to gain a bit. Carter loves car rides and walks in his stroller. He also enjoys his swing and bouncy seat, as long as he's close to his mommy and daddy. He's a cuddler--he will snuggle for hours!
Thank you for taking the time to learn about our sweet baby....pass this along to anyone who loves babies!!

Carter's progress

Our first family blog!
Carter is 5 weeks old today! He appears happy and healthy and has slept quite a bit today. He does have a few challenges ahead. On Monday April 17th he will undergo a liver biopsy. His bilirubin numbers are still high and the doctors are concerned about that. Bilirubin is produced in the liver and aids in digestion. Too much of it results in cirrosis of the liver. The ultrasound also did not show a gall bladder or bile ducts. This also concerns the doctors because that shows signs of a disease called biliary atresia. This disease causes the bile ducts and gall bladder to wither and dry up. When Dr. Schropp does the biopsy on Monday, he will also look to see if he can locate bile ducts. If he cannot, then the conclusion is that he has bililary atresia. The doctor would then perform a procedure called the Kasai procedure, named for the doctor who devel0ped it. It consists of taking part of the small intestine and attaching it to the liver so the bile has a way to exit his body. If it is successful, he would still eventually need a liver transplant. http://www.classkids.org/library/biliaryatresia.htm
Our hope and prayer is that the doctor will discover bile ducts and that Carter doesn't have bilary atresia. Carter is our joy and treasure from God. We believe God has a great plan for him (Jeremiah 29:11) and he will grow to be a happy, healthy boy.