We're scheduled

After a visit to a surgeon at Riley Hospital we are now scheduled for surgery on September 28th. It might seem like a long way away, but we needed a Friday due to my school schedule. Luke will have to spend just one night in the hospital due to the g-tube part of the procedure. Jonathin asked if there was any other options beside the g-tube for Luke and their response was a NG tube. We had that throughout our NICU stay along with the first couple weeks we were home. Luke fought the placement and the fact that it was taped to his face. The surgeon, Dr. Leyes said that most g- tube candidates are NG when he sees them and the parents have just had enough. I know it's an option, but why push back the inevitable.

Dr. Leyes then was looking at/for the hernia. We used to see it all the time when Luke was first home. However, we don't see it much. I know it is there though. We saw the x-rays in the NICU and the ultrasound when Luke had the abscess 10 months ago. While feeling around the hernia one of Luke's testicals decided to hide. We don't know if this happens often, it has never been brought up to us before.This adds to the surgery. Along with the hernia, Luke might also need a procedure to pull down his manly part and have it sewn in place. Dr. Leyes says it all depends on where things are once Luke is on the operating table.

Everything will hopefully be done laparoscopically with a tiny camera going through his belly button to show everything. They will pull his stomach to his abdominal wall and sew what they call a Mickey button there. This is his g-tube. We will be able to use it right after surgery. Then Dr. Leyes will look at the right hernia and possibly a left hernia. That can all be fixed the same way with the camera depending on the testicle. If it is back in the scrotum then no worries, however if it is in his abdomen then he will have to make a slice in the lower scrotum and pull everything down and suture it before they can work on the hernia. So if everything goes well, things will be all laparoscopic.

Now the g-tube will have sutures holding it in place for 5 days so it can heal in the right place. Then those sutures are taken out. The original tube will be in place for 2 months to heal correctly. Then we will go back to the surgeon and they will show us how to change the tube at home after that. This way we don't have to make many trips to Indy. We will also have to learn what to do if Luke pulls the tube out or for some reason it comes out. They will show us all of this. Luke's tube isn't his only way of feeding. He will be using it just if he doesn't take enough calories. What he doesn't take to in the day will be placed in the tube. This way he will be steady day in a day out. It won't slow him down, it should speed him up. Just the increase he has had lately has made him more active, add a little bit more and hopefully we can catch up quickly. For the tube to be removed he has to be able to not use it for 6 months and still gain weight. You can't really be given a time span, it is all up to Luke. Who knew a one year old would have so much control of our lives. He has had that power since birth.

So till the 28th we just keep on with what were doing. Today Jonathin leaves for the guys big week long fishing trip in boundary waters. Last year he went and we had daily phone calls and pictures from the NICU, this year hopefully that doesn't happen. A year ago at this time Luke was finally taken off the ventilator while they were gone. I don't think I need any big things this week.

Just a quick note...this past week I was turned on to a new book on another blog I religiously follow...Life With Jack. It is called Preemie, Lessons in Love, Life, and Motherhood. I read it in a couple hours while Jonathin watched Luke. It is amazing. The author is a mom of a preemie girl weighing 1 pound 13 ounces that is now 11 years old. It sums up my feelings from Luke's birth so well. We might have had two totally different situations, but the trip is still the same. It also gives me a lot of hope to what the future can hold for us when we get through all the troubling parts right now. I would highly recommend it to anyone that had a preemie or knows someone that did. It is by Kasey Mathews. It shows how a mom feels in this situation even if she doesn't want to talk about it...cough cough.. Thank you everyone for the continued support and prayers. Hopefully the next month doesn't take forever to get here.

Jordan

Waiting to schedule

Even with Luke's great intake of formula the past two weeks we can't overcome the nutrion need.  We went for a weight check on Wednesday and Luke lost a half an ounce on one scale and gained half an ounce on another. I know it isn't good if they are that different, however no matter how you take it, it's still half an ounce. So where do we go?  G-tube... This is no easy choice, and I know this has been a topic for sometime. I feel like we have tried everything at this point. His biggest problem is he isn't routine. He doesn't take the same amount everyday and his body uses the extra from one day to make up from a day. This tube will help to prevent this. Whatever Luke doesn't take by mouth, we will give him by tube. I think my biggest worry is the general idea of the tube. It is another reason my child is different from his cousins and friends. Another reason to put him in a different catergory. It is another story to tell. It is for the best, but won't ever be an easy decision.  I just ask for continued prayers for Luke and us as a family as we move forward and hopefully find some peace.

Weight Check...Check!

If you follow me on facebook you know that Luke has been going crazy with his new bottles. We went Wednesday for another weight check. He has been taking his new bottles for 4 days or so. We were still using 4 ounces or so each bottle. Which even that amount is a lot to what he was taking. Luke weighed in at 15 pounds and 2 ounces. He went up 3 ounces. It might not seem like a lot, but it is steady and not extreme. It is no where near the pound and a half they would like us to reach by this coming Wednesday, but I feel like it is safer for Luke to gain like this. If he can keep this up, I will fight the g-tube placement unless we falter again. However, right now it isn't in the cards. He is taking at least 24 ounces a day, and yesterday he took 33 ounces. He is taking 8 ounces bottles, that's new. We are not using Miralax and he is so much more comfortable. I am fighting the urge to weigh him at home, I just want to wait till next Wednesday and see if he surprises me.

Laura, our OT, came for a visit yesterday and should couldn't believe the difference in Luke. His face is fuller and he was so happy and moving all around. She was so happy with his progress. Hopefully we can keep it up.