Hey Tubie Mom' s, I just have a few questions if you have the time. I would rather hear from you that have experience than the doctors....sorry medical professionals.
How long did it take for your kiddos to get used to the feeds. Luke's stomach still doesn't allow for the 5 feeds of 6oz every 3 hours. He just has slow motility and were sitting at 4 feeds as of now. Also, the past two nights he has gotten sick an hour or more after his last feed and throws it up...and mean all that is there. He is pooping, so I know it is going through him, but still not getting there.
How do you add baby food to the equation? The doctors just want formula, but he loves his food and I don't want to lose what he likes and knows how to eat.
Also, how do you give it? Luke has a wandering hand that likes to grab the tube and then hurts himself. I'm trying to balance giving it slowly, water to flush, and watching his quick reflexes...not always working out.
How fast do you give it? I feel like I'm taking my time, but then its tops going all together. I don't want to make him sick. He doesn't seem to mind it, but I don't want to do it too fast.
I knows lot is trial by error, but any useful tips would be great at this point. Thanks in advance
Tuesday, October 2, 2012
Sunday, September 30, 2012
Well...let's get gaining.
All is well now. The past 48 hours has been long and a little overwhelming. On Thursday Luke, my mom, and I left for Indianapolis to spend the night at my Dad's hotel. He had been in Indy all week due to work. We still hadn't heard from Riley about the time and other information about the surgery when we left. Ofcourse we couldn't have a normal trip to Riley, due to the help of some crazy person in the Riley emergency room. Apparently on Thursday around noon, something chemical spilled in a purse in the ER that led to people becoming sick, and actually coding. The lady that brought the fluids in is still in critical condition. To make a long story short, everything was delayed due to homeland security and the hospital being on lockdown for many hours. So when we did receive the call it was a good thing we had already left, because Luke's surgery was first at 7:30am and we needed to be there at 5:45am! Luke played that night in the big king sized bed and relaxed, unlike his mother.
It was rough the next morning letting the nurses take him back. My biggest fear was the anesthesia and the tube they were putting down his throat to breathe. We'd been through that enough, didn't want to go back. However, the doctors said he did great, and Jonathin made it down in time from work to see him first in recovery. He looked so sad in that bed all drugged up. I think that was the worst part. He got the works with his hernia, orchiopexy, and g tube. Quickly after we saw him he was moved to his room up in the Simon Towers. All he wanted through the day was his blankie, pacifier, and his morphine. We tried not to touch him, because he was so sensitive and it would just agitate him more. He was in and out of sleep all day long. The night wasn't so bad, other than a couple times he was awake and they gave him meds. They started feeds 4 hours after surgery purely through the tube. He didn't seem to mind the food, but sure didn't want us touching his belly. His MIC-EY button looks a lot like a hole on a beach ball. It has large sutures around it holding it in place till Wednesday. We just lock a tube in to it and feed him by gravity. By the time Saturday was there I wanted to see if he would take some by mouth before we tubed him, since that is my plan. I don't want to rely on the tube all the time, so he forgets how to eat. He took half a bottle that way for me and then we were able to tube the rest. Finally after the tiniest of bowel movements we were discharged at 4pm on Saturday. Luke did really well on the car ride home. We thought the carseat would be a problem, but he seemed comfy until you had to get him in and out.
We're now home and Luke has survived his first night back. He must have really missed his bed too, because we are on 12 hours so far of sleep...yea! So today we will take it easy and try to figure out this new lifestyle. thank you again for the prayers the past few days and over the past year. Hopefully this will help us gain some weight and alleviate some stress for all of us.
Jordan
It was rough the next morning letting the nurses take him back. My biggest fear was the anesthesia and the tube they were putting down his throat to breathe. We'd been through that enough, didn't want to go back. However, the doctors said he did great, and Jonathin made it down in time from work to see him first in recovery. He looked so sad in that bed all drugged up. I think that was the worst part. He got the works with his hernia, orchiopexy, and g tube. Quickly after we saw him he was moved to his room up in the Simon Towers. All he wanted through the day was his blankie, pacifier, and his morphine. We tried not to touch him, because he was so sensitive and it would just agitate him more. He was in and out of sleep all day long. The night wasn't so bad, other than a couple times he was awake and they gave him meds. They started feeds 4 hours after surgery purely through the tube. He didn't seem to mind the food, but sure didn't want us touching his belly. His MIC-EY button looks a lot like a hole on a beach ball. It has large sutures around it holding it in place till Wednesday. We just lock a tube in to it and feed him by gravity. By the time Saturday was there I wanted to see if he would take some by mouth before we tubed him, since that is my plan. I don't want to rely on the tube all the time, so he forgets how to eat. He took half a bottle that way for me and then we were able to tube the rest. Finally after the tiniest of bowel movements we were discharged at 4pm on Saturday. Luke did really well on the car ride home. We thought the carseat would be a problem, but he seemed comfy until you had to get him in and out.
We're now home and Luke has survived his first night back. He must have really missed his bed too, because we are on 12 hours so far of sleep...yea! So today we will take it easy and try to figure out this new lifestyle. thank you again for the prayers the past few days and over the past year. Hopefully this will help us gain some weight and alleviate some stress for all of us.
Jordan
Wednesday, September 26, 2012
It's Time
In 48 hours time, we will be getting comfortable in our hospital room at Riley and all will be done...if all goes as scheduled. Luke and I are finishing up our laundry and packing our bags for the occasion. It is hard to know what to pack for this trip. What kind of pajamas for Luke? What kind of clothes to come home in? What is he going to be most comfortable in for the long ride home? I want him to be as comfortable as possible for the 3 and half hours home. Not to mention if we stop. I always over pack, but truthfully who doesn't with kids.
So sometime tomorrow I will getting the phone call from Riley informing me of the time of Luke's surgery. We are thinking it will probably be around 11am since they go by the birth month schedule. So after class tomorrow, Luke and I will be headed down to Indy to stay the night at a hotel. This way it allows Luke to be as comfortable as possible the night before. We don't have to hurry and Luke can get a good last meal before his surgery. Jonathin is coming down Friday morning after he gets off work. It is like being back in the NICU all over again.
I am anxious, nervous, and relieved that this time is finally here. I know we are doing the right thing and it is just time for us to get used to it. I am just praying this works, and we can stop constantly worrying about his weight gain.
At the same time we are down at Riley, a family that has been there for us since the beginning are down there as well. I went to school with Anna's mom and would like to ask for some prayers to be sent her way as well. She is fighting pneumonia and is trying to regain her strength. Just would like to get her home soon along with him mom and dad.
Thanks everyone for your continued prayers and concerns. Hope to keep everyone update as soon as possible.
Jordan
So sometime tomorrow I will getting the phone call from Riley informing me of the time of Luke's surgery. We are thinking it will probably be around 11am since they go by the birth month schedule. So after class tomorrow, Luke and I will be headed down to Indy to stay the night at a hotel. This way it allows Luke to be as comfortable as possible the night before. We don't have to hurry and Luke can get a good last meal before his surgery. Jonathin is coming down Friday morning after he gets off work. It is like being back in the NICU all over again.
I am anxious, nervous, and relieved that this time is finally here. I know we are doing the right thing and it is just time for us to get used to it. I am just praying this works, and we can stop constantly worrying about his weight gain.
At the same time we are down at Riley, a family that has been there for us since the beginning are down there as well. I went to school with Anna's mom and would like to ask for some prayers to be sent her way as well. She is fighting pneumonia and is trying to regain her strength. Just would like to get her home soon along with him mom and dad.
Thanks everyone for your continued prayers and concerns. Hope to keep everyone update as soon as possible.
Jordan
Monday, September 10, 2012
Holy Long Time Batman!
It has been forever since the last update....phew. I can't say there has been a lot going on lately. We are patiently waiting for Luke's feeding tube surgery. September 28th is taking it's time to get here. However, we have had a good time here lately. On Labor Day weekend we took our FIRST family vacation. We went to Holiday World in Santa Claus, IN. This was the first time Luke took a long car ride without visiting Riley hospital. We had a good time. Luke was able to ride a couple rides and play in the pool in the big water park. I think it was more of a vacation for Mommy. I was able to go out and relax while my Mom and Aunt watched Luke. It was the first time I've actually been gone from the house since Luke has been born, that once again, wasn't for a Riley appointment. He did well in the car also. We did plenty of stops for him.
This past weekend Luke and I ventured to the Riley NICU reunion in Indianapolis. Last year at this time, my mom and I walked down to it last year while Luke was still in the hospital. So this was the first year we could go. It was really nice and there was so much for the kids. The next couple years when Luke is a little bigger I think he will be into it more. The best part was getting to visit with Lily and her family. The text messages that we swap daily/weekly does not cover our need to talk on a normal basis. So just those few hours will have to hold us for a couple more months.
Hopefully I can do little updates more frequently now as I get my school schedule figured out...
This past weekend Luke and I ventured to the Riley NICU reunion in Indianapolis. Last year at this time, my mom and I walked down to it last year while Luke was still in the hospital. So this was the first year we could go. It was really nice and there was so much for the kids. The next couple years when Luke is a little bigger I think he will be into it more. The best part was getting to visit with Lily and her family. The text messages that we swap daily/weekly does not cover our need to talk on a normal basis. So just those few hours will have to hold us for a couple more months.
Hopefully I can do little updates more frequently now as I get my school schedule figured out...
Thursday, August 16, 2012
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
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
Friday, August 10, 2012
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.
Friday, August 3, 2012
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.
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.
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