Happy Koa!!!

well we've said enough about the medical side of things and now we should tell you about Koa. He is an amazing little boy, this has been his only major issue (i.e. no brain bleeds, lung problems, etc). he is so happy and you will always catch him with a smile on his face and is always ready to give you a laugh or in his case a chuckle. He's been a blessing to everyone's life and is an inspiration to never give up. if you were to meet him you would understand, you instantly fall in love with this little kid. and he's SOOO FREAKIN CUTE , i can't stand it sometimes. he loves yo watch sports especially football, and i know he'll be a huge Seahawks fan like his mom. Dad wants baseball, but Koa will ultimately decide that. but he's a great little boy and so smart and is very good, he only cries if there's something wrong and no other reason than that. plus he will sit there and have a conversation with you and will answer if you talk to him and will just talk away about anything. Granted he's not really talking for real but he does baby talk with you. there's so many other amazing things i could say about my son, but i think everyone gets the point!! :D

Latest Koa Update....

Well we went to our appointment last week and were told that Koa gained 29grams a day the previous week. YAY!! Plus he did well on his feeds and tolerated them and so we increased those again too. We went up to 50mL 5 times a day with the bottle and then by the time we come back in 2 weeks we should have him at 25mL per hour on his tube feeds. we were thrilled because the week before we were told that once you hit the 50/50 mark it was all downhill from there. well that week Koa was getting 60% of calories from the TPN and Lipids and 20% from his feeds. who would have thought that in a week things would dramatically change. This week's appointment Koa went up on feeds and this now gave him 80% of his calories and the TPN and Lipids only gave 20%. Well then we were told that they might be able to take him off of his lipids, but with news like that you never get too excited until it actually happens. Well after the nutritionist asked the GI doctor if that would be possible, he came in and told us yes it was possible and he supported that decision. SO KOA WAS OFFICIALLY TAKEN OFF OF HIS LIPIDS!!! this is going to clear up his jaundice hopefully and will reduce his bilirubin levels too, even though they remained about the same consistency throughout this process. plus we were told that at our next appointment in 2 weeks we would be introducing him to solids, but only meats and vegetables because fruits and puddings cause diarrhea.

the STEP procedure and Transplant Update

we were always told the Koa was going to get a STEP procedure eventually, so we asked when something like this was going to happen. The STEP procedure is when they accordion style staple the intestines and it allows the food to move slower through the intestines. well we were told that this would only happen if they hit a wall with Koa and weren't able to advance his feeds. other than that if it wasn't broke they weren't going to fix it. so this was ruled out for now and then we asked about getting the dreaded liver and small bowel transplant. We were told that most of the kids that receive these transplants are kids who are TPN and Lipids dependent and aren't able to absorb anything by mouth and Koa is able to do just that. they also said that most babies that need this don't even take anything by mouth hardly too.

Moving on Up...

well koa's goal for weight is to gain 15 to 21 grams a day, that's ideal. and Koa was doing that and even going over that. he went there weighing 9 lbs and then at this point he was about 12.5 lbs. so he was getting big. plus he was tolerating feedings very, very well. Koa was now going to get 40-45 mL in his bottle feeds and was going to be bumped up to 19mL per hour for his tube feeds. So things were progressing very well for Koa.

Omegaven and Fish Oil

we had always heard about this miracle product called Omegaven, and we of course asked about it. We were denied the Omegaven so at first we were a a little disappointed until we heard why Koa didn't qualify. His doctor told us that he would probably be able to "cure" Koa without the Omegaven and that most babies who receive Omegaven are on TPN and Lipids 24 hours a day or are babies who look like they have no chance of being taken off of the TPN and Lipids. This was very uplifting news for us to finally hear. Then we were told that we would be put on Lovaza, which is Omega 3, a fish oil. So we waited for insurance approval and give him one capsule twice a day. He may smell a little fishy but this is truly going to help him in the long run.... :D

The Switch

we had stayed with the hospital that Koa was born in for his outpatient treatment, for his short gut syndrome. while there he went from being on TPN and Lipids for 20 hours to 18 hours and then to 16 hours. His tube feeds bumped up to 15 mL per hour and he was getting bottle fed 5 times a day of about 20 mL. then we were told to try and get an appointment at Children's in Seattle for their transplant clinic and to meet with their head GI doctor. We called and were told that we would have to wait until January to first be seen, and we called in November, so with the help of his previous GI doctor, she made a call and even talked to the new GI doc and he got him in the following week. So we went to our first appointment with him and it was so different than what we were used to. We actually felt normal, in the sense that we could walk around with tubes and stuff and didn't get looks and extra stares. All of us were the same and were there for the same reason, to get our kids better from the best care in the region. So he changed up some of his medications, and stopped him flushing with Pedialyte due to him getting diarrhea. The next week we went and were so excited to go too!! This week we went up no his feeds to 30-35 mL 5 times a day and then went up on his tube feeds to 15-18 mL per hour. This was just the beginning...

The Big Day.. and then the 2 week bug

Koa was finally discharged from the hospital on September 24,2008, it was very short lived. He was home for a week and then was re-admitted due to a line infection. and with that he had to stay for 2 weeks so this delayed his progress in receiving his outpatient care for his short gut syndrome. he was released 2 weeks later and it was again short lived he got another line infection 2 weeks later and was admitted to the hospital. the standard protocal of staying for 2 weeks went on again. it was the same infection as before, they figured that the tiny tiny holes that were in his gut were leaking and attaching themselves to his line. so they then figured out an antibiotics plan to alternate each week to try and cut down on his infections....it worked and then everything changed for the better.....

TPN/Lipids, Tube Feeding, Bottle Feeds..The Works

well Koa has been on TPN and Lipids for about 6 months. This stuff is a blessing and a curse, while it has given him calories and helped him in that regard..it has also hurt his liver and given him jaundice. His skin has a yellow look to it and the whites of his eyes are yellow as well. When we go places people always look harder and say things like, "Oh do you know his eyes are yellow?" yes we know people, we know. But anyways the reason behind the jaundice is high bilirubin levels, which is attributed to his liver being affected by the TPN and Lipids. The lipids may give him the fat calories he needs but the plant based lipids also buillds up fat in the liver which makes it harder for his liver to process out. he also was getting like 10 mL through his g- tube of pregestamil, 20 cal, and was taking about 20 mL of pregestamil by mouth 3 times a day. So it was going to be a long road ahead we were told but we all were ready for it.

Koa's Story

Koa was born on April 14, 2008, at 4:35 am. He was born 14 weeks early and weighed 1lb 15oz. He was 13.5" long. He went to the NICU and was there for over 3 1/2 months. He had the typical preemie issues like a PDA(a heart murmur), which was ligated, but then he got NEC, or necrotizing entercoilitis. This is a bad intestinal infection. And Koa had it pretty bad, his intestines hadn't perforated yet but they were swelling and dying very quickly. So he went to surgery and got a silo, then those intestines were purple, not pink, so we got another call saying we need to remove these intestines too. His surgeon said if they go in and don't see any healthy bowel then he will go to comfort care... we didn't want to think of that possibility. So there was healthy intestine and once the intestines in the silo were removed he was left with 18cm. In multiple surgeries later he had a stoma, a drain for the bile to come out of from his stomach and then he got a G-tube and a Broviac. Then he was faced with being on TPN and Lipids and tube feedings. We were also told that he would probably need a liver and small bowel transplant. Koa, however, decided that he didn't want to do all that.........:D

This is where his exciting jouney begins!!!