Securing the GJ tube

We have tried MANY ways to secure Jillian's GJ tube. It is a 16fr tube. Her last tube was an 8fr. So this is double the size tube! It is not super flexible either. It needs to stick out straight for a couple inches otherwise it pulls the hole to the side. Here are some of our pictures:

Venting to a diaper... just a cut gauze around it

Just a g tube pad and PEG tube

g tube pad and belt... the tube does not sit right in the belt for now... can't wait for a button so we can use these!

Securing the GJ tube~ G pad and modified tension loop

Securing the GJ tube~ tube pad and rolled gauze wrapped around the base to make it stand out and then looped around the tube going back down to hold in

my cute g tube pad and a hand holding it :)

Securing the GJ tube~ Rolled gauze like before just the gauze covering the entire loop

Securing the GJ PEG tube~ rolled ace wrap and wrap going around... best solution so far!

picking out her g tube pad each day... how we let her take ownership of everything we put her through

Maybe at somepoint I will write all of the details of how we do each of these tapeings. Hope just these pics help.

To see my updated post on how we secure her GJ tube please go click HERE

All of her g tube pads are from Kangaroo-tique! We love their products!!!

Fortified no more!

Carly (her awesome dietitian!) called back today after we had her weight checked at the GI clinic yesterday after her nuro apt. She was 19lb 3oz without clothes on their scale (she has been weighed on that one a lot, we count it as her true weight).
Carly called today to say we don't have to fortify anymore! No more mixing milk! This is helpful since I am down to pumping 3/4 of her daily needs and the rest we are taking out of the freezer. We do have to remember to squeeze the bag every few hours so the breast milk does not separate.

She has not been her happy self today. I'm not sure what it up :( She woke up crying and has been fussy ever since. She has been throwing her head back a lot today :(

I have also spent most of the day figuring out insurance and medical bill stuff. Numbers is not my thing. There is a reason I teach little kids. I think I have some of it sorted out! Ahh that takes so much time and makes little sense sometimes!

I also spent a while trying to get her tube to stand right today. There was a lot of drainage that came out of it in the past 24 hours. More then she has had so far. Weird. I'll watch it.

I also read some info that came to me from the Oley Foundation. They help people with IV and feeding tubes for nutrition. They are a great resource! I am so grateful for Oley and Feeding Tube Awareness for everything they do for families like us!

Fall in July!

No, I was not playing with my tube in the car

Saturday morning we woke and my daddy made Swedish pancakes in a cast iron pan. YUM! Dad, Dan and Brent went to the music store and mom, Jilli and I went to Target, Bed Bath and Beyond, Gordmans, and Kohls. We also got to see our friend Beth outside of Bath and Body Works! In the afternoon Brent headed to our friend's Julie and Skittle's wedding. He was DJing. Mom, Dad, Dan, and I re-taped Jilli. We are working hard to figure out the best way to tape her PEG tube. It it so thick.
We headed down to Taste of Wisconsin down by the lake. Jillian slept. During the day we switched her over to Tylenol from oxy. We went back to mom and dad's and Dan went to help Brent pack his gear up. Dan headed home and Brent came back to mom and dad's. We headed to bed after he got back.
Sunday morning we got up. We all worked to get Jilli taped and ready for church. We were all just about ready to head out the door and she pooped all over, including her tape! We got her cleaned up an then headed to church. Jilli made it through the whole service in the sanctuary in her stroller. After church we had the annual Classic Cruse to Church car show. It was chilly! We had lunch out side and talked to a few people. Brent, Jillian and my cousin Jake walked around and looked at the cars.
After we left Brent and Dad went to Brent's grandparent's to help get their house ready to sell and to my grandparent's to fix their computer. Mom, Jillian and I went to Gurnee Mills. We found a tummy time pillow that will be helpful once Jillian can be on her tummy again. We also found some new clothes. We loved looking at some of the fun expensive stuff at Buy Buy Baby! We then headed back to mom and dad's house. We packed up and we all went to dinner at Noodles to use my birthday coupon. We came home and unpacked!
Monday morning Jillian slept in a little. She peeded through her bed around again! I installed her new carseat (see blog post) and we went to Walmart. It was the first time she sat in a cart. We have a cart cover thing the make it softer and nicer. She was sleepy so she had a kinda hard time staying upright but she did a great job. We came home and worked around the house a little. She is able to sit up for a little while right now and then she cries in pain. We have not put her in her jumpers again since surgery. We are also mainly giving her soft toys because she waves toys all around and ends up hitting herself and she cried if she hits herself with hard toys. I also moved some stuff in the livingroom and made Jillian a section in the livingroom for her toys. Man toy storage is kinda a pain.
Jaime and Jason came over for dinner :) I love having our weekly dinners with them. It is so uplifting!

Getting back to normal

We are working on getting back to normal after working in all our free time on our house for so many weeks.

Here a feww updates on some things going on right now:

Septic: On Tuesday we had our septic pumped out. The guy said it needed work. We had someone out that afternoon to work on it. He said there is a pipe that is a little off but it is not a big deal and they blasted the system and said it should be fine now. They said we need to put baking yeast in the system every 6 months. For two city kids who have never dealt with septic before this is a little beyond us. We said if we move again someday it will be to somewhere with city water...

Brent: Brent text me yesterday at 5pm with a picture of he orange snot coming out of his nose. Not something that should be coming out of anyone. He went to the walk-in this morning and is on antibiotics. I think he and Jillian are on the same one... now if i can only get him to take the entire 10 day dose instead of just a few days...

Jillian poop: Jilly has only pooped a couple times all week. It is still seaming to be a lot of work for her. I did get her more laxatives. Sadly when I picked it up our pharmacist was not on (it was someone I had never seen there before and the person looked super confused) so I was not able to bring up my frustration with what happened the last time I got it filled.

Tape: Medical tape makes me want to go AAAAHHHH frequently! Jillian is now more active with her hands and manages to take some of her tape off everyday just by being a baby. We use 2 small strips on her face and 2 behind hit er ear. We have tried many different brands of tape and different sized pieces and shapes, and while some stay better then others (1 kind I tried this morning did not last a half hour) most cant last a day. She did get all of her tape ripped off this week. I was packing her up to leave daycare and I turned to do something and a child tripped over her line (that I thought was tucked behind) and took all the tape off in one quick motion and pulled on the bridle. I had not heard her scream like that before. She whimpered for an hour. I felt so bad for her. If she did not have the bridle though we would have been going to Children's because it would have fallen out. I stopped at Walgreens this afternoon to try to find a different tape and found one that says it is for hold IVs in. So far it is doing so much better then the rest! I am hoping for a winner!

Jillian's tummy: Jillian sees GI on the 7th and we are thinking that it is going to be a big appointment. My prayer this week has been "God show me what we need to do and show us if what we are doing is the right thing." It is a constant balancing act of are we doing too much, too little or just what she needs. I want to do the right thing for her. I feel that God has showed me in the past 24hr that we are doing the right thing for our little girl. Jillian has started liking her new bottle sometimes and has drank an entire 10ml from them a few times. She still refuses at times and can be uncoordinated but it is something! Last night and this morning a large amount of that water came back. She gets 10ml of water in her bottles. 1 Tablespoon=14.78ml of water. So she is getting about 2/3 of a tablespoon of water. I would estimate between 1/2 and 1 teaspoon came back out it this morning. 

Visitors:  Jillian has been able to see 4 out of her 5 living great grandparents this week and she should see the other one tomorrow at church. She is so fortune to be able to see them and spend time with them. Brent's grandparent's are currently visiting from FL. 

Well it is time for me to try to get a little sleep. I have a cough right now and so does Jilly so we were both up coughing last night.

Blah!

Tuesday:
It was my day off and we spent most if it waiting for the dr office to call back. She started the day pooping and there was still blood in it. Around lunch time the ped's office called back. The two doctors talked (the alternate ped and the GI dr) and they decided that they wanted to try putting her back on laxatives to see if that would stop the bleeding. The theory is that because we went back to 27cal it might be having a hard time getting through someplace in her intestines.We started her back on the laxatives aat bag change in the evening.
In the afternoon we went to Walmart. I had a coupon for their photo department and I got somethings printed off. I went to the register to check out and the coupon from their website would not scan. The lady at check out told me it was too bad that I would not be able to use my $6 off coupon. I said I would like to talk to someone about this. The manager came over and very rudely told me too bad. I explained that was not acceptable and that I would not have gotten all that I got if it were not for the coupon. Then they started listening. Magically when I said I was willing to leave the pictures they decided they could see what they could do. Magically the manager made it happen (with attitude) very quickly. I did not have it budgeted to spend $6 more dollars. If it were a 50 cent coupon I would not have said anything but $6 is a lot of money! I then called Brent and told him in the battle of me vs Walmart I had 1 point.

"sitting" in daddy's chair

That night my mom came over to help me get some things done around the house. Brent came home and said he did not feel good and went to bed before dinner (he normally goes to bed sometime between 10pm and 2am). Mom and I started working and I started not feeling well. Soon my tummy was in a lot of pain. I would feel fine and then I would be doubled over in a lot of pain. I kept trying to work but ended up falling asleep on Jillian's bedroom floor while folding her laundry. Mom put Jillian and I to bed and headed out. Falling back to sleep was not as easy as I was in a lot of pain at this point. Brent and I were both up several times during the night. 

Wednesday:
Brent and I got up and felt like we had been hit by a bus. I decided I would go to work (I'm stubborn, and I have missed a lot with Jillian being sick) and Brent stayed home. I took Jillian with me. She pooped once during the day but it was not a ton and was still thick. That night Jillian hung out with daddy while my mom and I went to Best Buy to get new phones. My dad decided for mother's day we both needed new phones (my wifi only worked sometimes, it only sometimes rang and only sometimes told me I had new voice mails...). While I was gone I guess Jillian had a fun time taking daddy's blanket, yelling at it, and then shoving it in her mouth. She is so silly! By the time I got home she was in bed.
Jillian also decided that she did not want to keep tape on. I changed it was soon as we got to work, once in the morning, once before we left work and Brent changed it again at night. In the night she got the tape off and it was just dangling from the bridle in her nose.This is the second time this week she has had the tube dangling from her nose. On Monday I was getting her out of her carseat and I did not notice that her line got hooked on her carseat and I tried to walk and the tube got stuck and pulled the tape off. She cried and cried but the line and bridle stayed in. I felt bad for her because you could tell it hurt her but I was grateful that the line did not come out.

Today:
Brent and I woke up feel better with just a few lingering symptoms. Jillian and I headed to work where she was in a good mood. I played with her a little during nap time and she had a good time laughing at my boss. Once we got home I decided I just did not want to put her down (I really did not see her much yesterday) so we have been spending most of the night together. We facetimed with grandma and grandpa and they told her stories and sang her songs over the phone. The best past is they were out to dinner during this so I'm sure other people thought they were crazy but they did not care, it was for their Jilliebean. Brent was amazing and did my noraml night time jobs so I could spend time with Jillian (mixing milk for tomorrow, freezing milk and washing bottles) and he made me brownies!
I gave Jillian her bottle while she was off her pump. She started refluxing it and wanted her passy. About 20 minutes later I forgot that she had just eaten and I set her on her play mat so I could go to the bathroom. While i was gone I could hear her fussing a little. I came back to a play mat full of puked water and a very wet blanket and passy holder. I then took the blanket away from her and she got mad. Silly girl would be fine hanging out in her own puke.
Before she puked tonight I was questioning if we are doing all the right things for her. The past two days have been really good for her and I was questioning if all of her interventions were necessary... and then she started refluxing as soon as she drank water, showed signs of being in pain and puked. It is such a balancing act of making sure that we are doing what she needs and not doing too much or something that she does not need. She has been so happy the past two days but I have to remember that is impart because of the interventions that she is getting. Before the tube she was not nearly this happy and spent most of her time crying and puking and things have gotten even better with her on the NJ. Sometimes when you are not in the tick of the worst you forget what it was like, but then she pukes on you and the memories return. The month before the tube Jillian gained no weight..none! And babies that age are to gain an ounce a day. She was down to the 9th percentile and now we are up to the 20th. She has come such a far way. One of her teachers said today that she finally does not smell like puke all of the time and I am not having to bath her all of the time just to get the rancid smell off of her so I don't gag while holding her (her uncle Seth would even make comments that she stunk!). I watched one of her classmates leave a trail of spit up on the floor today and thought that "well all babies spit up, mine can't be that different, maybe I'm expecting too much from her" and then I watched tonight what she can do with just 10ml of water and was reminded what she use to do when we fed her 45ml every 1.5hr and how we use to have towels around the house to try to catch the mess. I had to go looking for a burp cloth the other day because we not longer have stacks of them on the couch.  I am so grateful for the progress she has made and how much the tube has helped and when I stop to think about the difference I am reminded that we are doing the right thing for her.  For Jillian the tube is the right choice for her to be able to eat, grow and not be in constant pain. She still hurts when she takes her water but that is a lot less volume and frequent then her taking milk by mouth so the intensity is nothing compared to before. I am also sleeping a lot better because I am not waking up to her choking during the night. A few nights a week she still will choke on reflux during the night and I will wake up to that but it is not several times a night like it was before. I am not as scared about losing my baby during the night. Even though more medical testing and even surgeries have been discussed she is in a better place and those things might help her even more. No my child does not eat like every other child in her class however she can now eat without the intense pain, vomiting and choking like before and that is completely what makes this way of feeding what works best for her and made me stop second guessing myself.
 
Tonight she dropped her passy onto the tray on her superseat and found it and put it back in her mouth! We were so proud of her. She is really working at that!

I'm 4 months old... thus I can do what I want!

Jillian turned 4 months old Sunday! Hard to believe that my baby is that old already! She decided that she wanted to give herself a gift... no tube for a few hours. We were at church Sunday morning and Jillian decided it was scream time. We ended up spending most of the service in the hallway instead of in the service. I was walking with her trying to get her to sleep. She was almost asleep when she started to cry again and throw her body in reflux pain. In her flailing she got her hand under her tube and pulled it out. I then had to get all the tape off and clean up the mess. Thankfully I had some helpful people around!
We put the tube back in her in the afternoon with the help of my parents. Each time we have needed to put a tube in they have been with us so we have gotten into a routine. It probably looks a little like hog tieing a cat on the dinning-room table.
Jillian has gotten into a lovely patten of choking around midnight. At that point she has been on the pump for 4 hours. I am not sure what about this time is causing problems but I have been waking up each night with her then. Some night are worse then others and some nights she has some regular coughing mixed in there too that sounds like a dog bark.
Today we went to the doctor for her next shot. She was up to 12lb 9oz. She got the Hib vaccine and really did not care about it going in. She was more upset that while we sat there for 10 min after to make sure she did not have a bad reaction immediately, I tried fixing her tape. Since we changed her tube on Sunday we have not gotten the piece of tape by her nose just right so they keep falling off (we use duoderm by her nose) and I wanted to fix it when it started falling off so we did not end up putting a new tube in again. I ended up having to redo it again in the car before we left because the replacement was already falling off. I think I have it good this time... hopefully! She ended up eating her 11am bottle in the car too before we left. We had a 10am appointment but the Dr was not in today and they had a hard time figuring out what shot she needed today since she is running on her own timeline so we did not get the shot in until 10:40, and then wait in the office around 10min to make sure she is ok and it is time for her to eat. There is a part of me that is hopeful that part of the screaming in the doctors office was for food because she has not seamed to be very vocal about wanting to eat lately. She would be ok with sleeping through some of her meals if we let her, so while I don't love the hear her cry there is a part of me that is grateful when she asks for food.
I want to put a big shout out to all of the people who have done there best to make our lives a little bit easier lately! Some of you have gone out of your way to do kind and helpful things for us and it is truly appreciated! It has been amazing to have someone bring us dinner in the mix of crazy dr appointment schedules or come over and wash a few dishes.
We are not currently at a point that we feel ready taking Jillian out while she is hooked up to the pump (we will get there) so it is amazing when people are willing to come to see us, or eat dinner early so we can be home in time. We appreciate it so much when we don't have to explain over and over why something or a situation has to be a certain but when people just roll with our craziness right now. Through all of this you really find out who cares about you and who has your best interest in mind. I have felt a little guilty lately that I have not been able to be as involved in our friends lives as I would like or that I have not been as emotionally available to others. I really do love my friends and I am grateful for the forgiveness that some of you have had to extend lately when I am not able to be as good of a friend as some of you deserve. But like Brent said, our true friends and family really love us enough to love us where we are right now and walk the journey with us and do not judge us and for these people we are more grateful than we can express!

Jillian with her giraffe friend this morning. She liked eating his feet!

Our next appointment is with GI this Friday but until then I am going to cuddle up with my little girl with her shot and love on her. I might also try to get some cleaning done..... maybe!