Introducing my latest creation!
7lbs 6oz & 20″
She has joined our family and in true fashion to how things run at our house she’s already had her first ER trip.
Tinleigh’s tube has become infected for a second time. She starts with bowl issues then it turns into an infected tube. We’re doing some tests and hope to find some answers. I want to share the picture of her tube for others wondering what it might look like and if someone is trying to figure out if their tube might be infected.
This was right after her bath. I keep a thin single layer of gauze around it and change it a few times a day. It gets very crusted up with yellow and red tinged grossness. As you see the area around the tube is very red. Gage’s tube area sometimes becomes red as well. The difference is where her’s is red its very hard underneath. While his stays soft. On the right, you can’t see it, granulation tissue has sprouted out in the last 12 hours. If you notice also her belly button area has become red. This happened last time as well. It’s hard to tell but the entire area is swollen. Her tube is very tight against her skin and actually leaves an indention.
She is able to hook up and feed. It upsets her though because she anticipates it hurting when I touch it. Once she’s hooked up though she’s fine. Usually once the antibiotic kicks in she’s able to wear her back pack around as usual. When it’s super tender she prefers to sit on the couch with her back pack beside her.
I hope this helps anyone wondering if their tube is infected! I would also love to hear from anyone that has experienced tube infections. Having two back to back is very frustrating, along with not knowing why she’s having bowl issues along with it. Maybe someone has some insight for me.
Let’s play catch-up!
Monday, February 10
Share your tips for feeding on the go or in public! Where have you tube fed? Talk about the most unexpected places you’ve done tube feedings.
We have tube fed just about everywhere and I really don’t think it’s odd. It’s just how it is. We use backpacks so no one really knows that the kids are hooked up. Of course Tinleigh’s is tiny and adorable, she gets lots of comments about it. I just smile and say thank you. We feed at stores, in the car, school, the movies, while playing inside and out, at other people’s houses, the zoo, airport, I would say just about anyplace we’ve ever gone.
Tuesday, February 11
Show how tube feeders can do what they love to do. Share what obstacles you or your child have overcome!
I think the biggest thing Gage had to overcome was how he felt about being hooked up at school. It was really no problem. None of the kids asked him why he wore his backpack during lunch. It was probably more the anticipation of what others would say. Other than that Gage does the same stuff he did prior to the tube. As does Tinleigh so far. Gage has played soccer, basketball, gymnastics, swimming lessons, boogie boarding in the ocean and played like a boy outside all summer long. The tube hasn’t slowed him down a bit.
Wednesday, February 12
Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?
This one makes me laugh. It seems we constantly have a challenge. I can’t exactly say that anything makes it easier. I am thankful my kids are pretty easy going. I just handle what ever comes our way and they don’t really know any different. I know that our lives aren’t ordinary and all you can do is accept that fact. A normal day to us may seem crazy to anyone else. We don’t know any different though. We don’t dwell on bad days. They come and they go. In the last month we have had g-tube surgery canceled, rescheduled, recovered, developed freak hives and had allergic reactions, had the flu, I had bronchitis, had a tube infection, caught strep and had countless doctor appointments. Oh, and I’m VERY pregnant. I keep things as organized as I can so I can grab and go on a whim. I leave myself notes so I don’t forget anything including feeding times and meds. I still have bills to pay and regular dinners to make just as any other mom does. I clean my house and do laundry. I have a cleaning schedule I try to stick to and I will admit I’m a bit ocd about some things. But I have to be to keep this house running as I need it to. I’m also a wife, and as all marriages go, that takes work too. I just do it, it’s my job. I do know that we have lots of prayers sent our way and tons of support, that definitely helps our journey! Thank you everyone.
Thursday, February 13
What are your tube feeding hopes and dreams for you or your child in 2014? What successes do you want to build on?
For Gage my prayers are that he continues to add foods successfully with clear scopes. I also hope that he will start to eat more. I know he wants to get rid of the tube as soon as he can. I know he would also love to have a taco or hot dog. I pray he continues to stay happy with life and doesn’t take to depression about food as many kids with EoE do.
I want Tinleigh’s body to calm down and stop being so over reactive. She’s become very sensitive to just being around some foods these last few months. She can’t even sit at the kitchen table with out breaking out in hives just from touching the table. I also pray her fist scope after getting the tube is clear so we can start to successfully add foods to her diet.
Friday, February 14
Share the tubie love! Share pictures of you or your child living life to the fullest, or pictures showing off your tubie love gear. Today is about living and loving life.
I recently did a blog on this as Gage passed his one year mark with the tube.
I will share some pictures of Tinleigh with her tube! She recovered then got sick and then sicker so she hasn’t done a whole lot yet as far as living her little life to the fullest. The days she feels good though nothing holds her back!
I was very excited when I learned the theme this year for feeding tube awareness week “Nothing can hold us back”. I really feel it goes right along with my blog LIVING the Allergy Life. We are living and though I’ve been slacking a lot these last months I do plan to continue to show that allergies, asthma, EoE and feeding tubes don’t hold us back. We will forever keep on LIVING!
As you know I have two tubies. So we are definitely spreading awareness this week.
Today’s topics are: Why does my child have a feeding tube? What positive benefits have come from tube feeding?
Both of my kids have feeding tubes because they have Eosinophilic Esophagitis and their bodies have become so reactive to food we had to remove it all from their diet.
Will they ever eat again? Yes. We will trial foods and continue scoping and taking biopsies of their esophagus to keep the disease under control and figure out what their trigger foods are. Gage’s current safe foods are: blueberries, rice, cocoa, strawberries, lemons, oranges, tapioca, fin fish, green beans and black olives. His trials currently are cherries, pork and tomatoes. Since Tinleigh has just gotten her tube a few weeks ago she is only allowed smarties, sweat tarts and pixi sticks. Mainly sugar candies with no corn syrup.
So how long will they have their tube? It is unknown. It all depends on how their food trials go. They need to get enough food back into their diet that they can have the nutrition they need with the disease under control. It could be three more years it could be life long.
What positives have come from having the feeding tube? First off my kids have grown! Since DEC 2012 when Gage got his button he has gained 13 pounds. That’s huge for a five-year old. He is definitely benefiting from having a tube. Tinleigh hasn’t quite had her tube for a month yet and she’s already gained a solid two pounds. I’m sure getting the nutrition they need has helped brain development as well.
A few positives for myself as their mom: I don’t have to figure out what to feed them everyday which was very hard on such a limited diet. I also don’t have to pack a million snacks and food if we go anywhere. Now it’s just a bag of formula.
Happy 8th Birthday Charlie!
We had no idea what we were in for You are full of life!Definitely all boyVery much a little scientistI love to listen to your thoughts and ideas. Always thinking outside the boxI hope you know how brave, intelligent and loving you are.
I’m going to play catch up real quick. Sort of a week in one post about how Tinleigh is doing and things I learned.
Tinleigh seems to have adjusted to not eating. She no longer goes to the pantry and asks. Which is a huge relief because it’s so hard. When she would go to the pantry I would tell her no that will make her belly hurt or it will make her puke. She knows what it means to puke. I would then offer her one of the candies she’s allowed to have. She doesn’t always want the candy so I have to quick think of a toy that we can go get busy playing with. That would usually do the trick. I think it took her a solid week to get over the food.
Let’s move onto candy. When you go elemental you can’t have foods that have protein in them. You are limited to only sugar things. However, sugar candy has a lot of crap in it such as corn starch etc. When Gage got his button we got a little cotton candy maker. Nathan made some up for Tinleigh. Although the idea of it was wonderful, she couldn’t eat it. She kept making a funny face then we quickly noticed she was getting a few hives around her mouth. Who knows what from. Very frustrating. She can also have pixi sticks. I hate the idea of my 2-year-old pouring sugar straight into her mouth but when it’s the only thing she can have you just let her. Tinleigh may also have Ramune original pop. She loves it. I don’t let her have a whole lot though because filling her belly with the pop can interfere with how much of her feed I can pump into her.
She’s had her fill of smarties, sweet tarts and dum dums. She actually will refuse them all. With the smarties it can actually only be the old label smarties. They’ve changed the ingredients and we can’t give her the new ones now.
Fun dips are always fun. They are messy though. I pour it into a bowl for her and she mainly just plays with it for a while.
I got a ninja blender for Christmas and I will crush up some ice in it like snow for her. She loves to eat ice. We can make Popsicles using Grape and cherry kool-aid. For that I use my new zoku popsicle maker. It will make popsicles in as quick as 7 minutes! Anything from kool-aid to smoothies.When all else fails a cup of water and toys is always fun. In terms of her button she’s adjusted well. She’s never tried to pull it out. I am guessing because Gage has one so she’s familiar with it. She has pushed at my hands while I am trying to hook her up or unhook her. I remind her that she can’t do that because mommy doesn’t want to pull her button. She comprehends that and will stop. I have kept one piece outfits on her all week. The type that button down. No onesie or undershirt though. That way when it’s time to hook her up all I need to do is unsnap a few snaps, hook her up then snap her back up. Once she’s hooked up she never messes with it. I always stay close to her though, I have to remind her to leave her back pack on. For bedtime I put her in sleepers only. Or a long sleeve onesie and pants. I don’t want the button to be exposed. She sleeps with a blankie and a few stuffed animals, I don’t want anything to catch on it.
I have given her a bath every night to make sure we keep her button clean. You are not allowed to submerge the button under water for two weeks. I had to keep her from laying down in the tub. I wash her as usual. Soap falling around the button will not hurt it. After I dry her off I gently wipe around the button with a q-tip to get any gunk off of it. This does not hurt her. While she’s in the tub I also ask her to turn her button. Just so she’s use to it moving and helps her to get comfortable with it. She will turn it to face the right way then pat it and say okay!I believe she has only puked twice since getting her button. We’re still adjusting her feeds to get her where she needs to be but we’re doing it slow enough she’s not having issues with it. She has to get 1200 calories a day. We’re around 1000 right now. Which is huge for her considering how little she was eating prior to getting her button. She’s actually gained a pound already in 9 days. She gets hooked up every three hours for about 45 minutes and takes in 8 ounces. We do this four times a day then she takes a formula bottle at bedtime. I let her decide then how much more she wants. Compared to Gage who gets hooked up every four hours and takes in 15 ounces in 35 minutes. Our goal with Tinleigh is to get to 10 ounces four times a day instead of 8 ounces five times a day.
Overall Tinleigh is a new little girl. We were so miserable those last few months. No one was happy. She’s not whining all the time now or constantly yelling at me for food. She will actually go play with her toys now. Not just for five minutes either. She will sit and play for quite a while. She’s happy. Her belly is full. Don’t get me wrong, she’s still feisty. I can’t believe the change I see in her so quickly. I really know it was the right choice to put a feeding tube in her. Have we had our hard moments? Yes. We still try not to really eat in front of her. Charlie and Gage do, but I sneak eat. We have not all sat at the table and ate in front of her. We will eventually, just not yet. The biggest moment that sticks out in my head that I will never forget is the one evening I was unhooking her with Nathan right there. She was still in the phase of getting upset at the thought of it hurting. I told her not to push my hands because I didn’t want to pull her button. She put her hands down and whimpered as I unhooked it. We got all done and cheered but she just broke down into real tears. It was horrible. Like why do you keep doing this to me? She fell into Nathan’s arms and just cried. Very hard to handle as parents. We’re past her being scared now and so it has gotten easier.
We’re moving forward and LIVING!
We’re home and have to get back to it. I needed to get Tinleigh adjusted and to her new normal. That morning I was up at 7am to hook up Gage in bed. Then off to the shower. I packed lunches and got the boys all set for school as usual. Tinleigh still slept. Mom ran the boys to school for me that morning while I stayed at home and hooked Tinleigh up for her first morning feed. Our issue with the day was going to be the feeding tube pump. We only had one. So I sent Gage to school with his feeding tube book bag and formula bag all ready. Once Tinleigh was done mom was back and I had to leave for my monthly ultra sound to check on baby’s growth. Before my appointment though I had to run the pump to the school so Gage could eat lunch.
Mom stayed home with Tinleigh and they played all morning. She played pretty low-key. She was able to get up and move around but was very cautious. She wouldn’t bend over to pick anything up. Stayed very straight. So they did stickers, tea parties and played on my tablet.
I returned from my appointment and had to run right to the school to get Gage’s pump for Tinleigh’s next feed. Luckily while I was gone I had a call from the home health letting me know we would get a delivery of her pump and back pack that evening.
She did pretty well with her feeds once she was hooked up. The anticipation of the tube hurting made getting hooked up and unhooked hard. I hated playing tough mommy but she had to do it. When Gage was home from school he was right by her side coaching her through it or trying to help distract her. What an awesome big brother he is. I’ve never see the two of them interact like that.
We did have a puke incident. She had been drinking water though before a feed. I think we just stuffed her.
She went to the pantry a few times asking for food. Not because she was hungry, but because it’s habit. I would ask what she wanted. She would point to something and I would just tell her she can’t have it because it would make her puke. She very much understands what it means to puke. Then I would offer her a pixi stick, fun dip or sucker. She would pick one and be happy with it.
The big event of the evening was the back pack arriving! It was so adorable and tiny. Just her size. It did make me a little sad but I had to accept it. Tinleigh thought it was just wonderful. “Just like Gage” she yelled in her own Tinleigh language. She wanted it right on. So we put all of her stuff in it and got her going. I highly suggest getting a tiny back pack so your toddler can run free!
That evening the Gage met us in the garage. He was so excited to see Tinleigh and have her home. He immediately wanted to see her button. I told him we needed to get her hooked up very soon because it was time. As Tinleigh and I made our way into the family room Gage took off. After a few minutes I went up to the kitchen to get her formula ready. Gage was getting things ready for her. He had gotten a new formula bag out and had it hooked up to his pump. He was filling the little water bottles with distilled water so we could flush her when we were done. He also had the pitcher of formula sitting on the counter. I can’t imagine how he felt. He was so happy to help out. Shortly after he got his button he would ask us when everyone else was going to get a button. His little dream came true.
So we sat Tinleigh down on the couch and proceeded to try to hook her up. Of course she was scared it was going to hurt and didn’t want anyone touching her. Gage was right by her side trying to distract her, telling her it doesn’t hurt and that she needs the food in her belly. It was so sweet. Finally the two of them have a connection. One of us sat with Tinleigh during her feed and when she was done Gage was right there to help flush out her extension tube.
I gave her a bath after her feed. One thing to know about your new tubie is that they can get it wet but they can not submerge it under water for at least two weeks. She played for quite a while in the tub. I bet it made her feel like a million bucks.
That night I laid her down at her usual 7:30 bedtime. She slept so soundly the entire night. She didn’t wake up until after 9am the next day. Poor thing was exhausted. She had not had her full daily calories by bedtime, but we assumed her tummy had shrunk and didn’t want to push it. I also was not about to hook her up over night she needed some good sleep.
Tinleigh and I slept in until after 9 on Wednesday. Starting around 6am though I had to keep shoeing doctors and attendees out of the room because I knew she needed her sleep. Finally when I did allow a group in I shook the lead doctors hand and Tinleigh shook everyone’s hand as well. I knew we were going to have a good day. She was being friendly. She even let me get a picture of her belly. I said say cheese! She said no.
Mom arrived a short time later. I was able to change my clothes and brush my teeth. I touched up my make-up. Tinleigh put some on as well. A girls gotta look her best. The little guy next to us had gone to the playroom and was gone all morning. I sort of felt relieved I didn’t have to worry about how loud we were being after our late night. I did apologize. The mom was so understanding and told me had we been there the night before we would have heard him yelling the same way she had been.
Finally our GI doctor came in. She informed me that as long as Tinleigh wasn’t in a great amount of pain we could go home today. She just had to be able to tolerate two feeds of formula through her tube. I took the deal! So our plan was to hook her up now, then again around one. We also had to discuss our plan of action for the next few months. Funny thing is a few short weeks after I found out about our little #4 surprise our GI found out the same thing. So we’re due with in weeks of each other. That puts us close to what would be Tinleigh’s first three month scope on elemental only. We worked things out and have a plan, my mind is at ease. We will scope Tinleigh in three months time only if she’s begging for food. If she’s content how she is then we’ll push it off for 6 months. That is around the time we will be scoping Gage for his new food trials.
Tinleigh did awesome with the first feed. She was a little groggy. When she had woke up she was complaining her belly hurt so we did one more dose of morphine. She just wanted grandma to hold her. I ended up running down to grab us some lunch while she was happy in grandma’s lap. When I got back Tinleigh was asleep in her bed. Mom said she wanted to get back in her bed. So she laid her down and she fell right to sleep. She was still sound asleep when it was time to hook her up again. We decided it was best for her to rest rather than to worry about getting out of there asap. Tinleigh slept and slept. To the point where it was getting to cut off time of mom having to leave to go get the boys from school. So I made a few quick phone calls and was able to have a friend get the boys so mom could stay with us and we could leave when Tinleigh was ready.
She finally woke up and we got her going. She was very leery of us touching her button. I’m sure it was very tender. We assured her though it was ok and I was ever so careful. Luckily I didn’t have the shakes like I did when Gage got his button.
The number one thing I had already started getting lined up was her home care delivery. Gage gets a shipment of supplies monthly. This would include his formula, formula bags and extensions. Before we even had surgery I had already spoke with someone in our GI office about the supplies I wanted for Tinleigh. I told them the size bags, brand of pump and the special little book bag I wanted for her. So when we got to our room the day before I immediately began finding out where they were with her delivery and if things were in place. They had the call into our home health delivery company but things weren’t 100% lined up yet. So even though Tinleigh had finished her second feeding we weren’t cleared to leave. I assured them I had supplies at home and she could share Gage’s pump. They were fine with that. They wanted to make sure though she would get her delivery the next day. So it took about another hour before we got the final ok to go home.
In the car I quickly realized Tinleigh’s seat buckle hit exactly where her button was. So I had to recline her seat a few notches so that she wouldn’t be sitting straight up and risk pushing on the button. I was so certain I would hit a bump and she would be screaming in pain. Luckily we made it home safe and sound.
I would say our biggest issue was keeping Tinleigh occupied. Some of the things I took with us included a paper doll book with stickers to dress the dolls in. Sheets of stickers I purchased at the dollar store. My tablet. My phone. She has a Dora hard plastic backpack that we packed with all her little animals she plays with. I even took some plain paper and construction paper with crayons. Luckily the tv system they had there allowed us to also rent movies. That helped tons!
Then we were home…to be continued.
Back we went to the hospital the next Tuesday morning. Nathan had an important meeting at work he could not miss so mom went with me this time.
We pulled into the parking garage and Tinleigh said “No”. She knew what was going on. We got her up to peds surgery and tried to get her to play. She was so hungry and thirsty this morning. She was not a happy camper. Luckily it wasn’t long before the nurse called us back. Tinleigh was hesitant to go back this morning. We finally got her to willingly walk back. She did however refuse to put on the hospital jammies. She made her mask just like she does every time. Then we tried to keep her occupied playing with cars and a little train set. She was begging for something to eat and drink. We tried our best to keep her mind off of food and drink and tryed to get her to focus on other things. Finally I told her the doctor would bring her a drink, oral versed. From that point on every time a nurse would walk by she would yell “Doctor drink! Doctor drink!”
Finally she got her oral versed, I signed consent forms and spoke with the doctors that would be in her operating room. She was relaxed and ready to go. I had slipped on her jammies with out her even really noticing what I was doing. She had her tubie buddy with her that she had received the week before. The attending anesthesiologist came and got her and off they went. Huge deep breath. Here we go again.
Mom and I made our way to the waiting room and settled in. I then decided we better eat because it was going to be a long afternoon. Once again I sulked down to the cafeteria wondering if they would be able to proceed with the operation this time.
I made it back to the waiting room with our food and there was no sign of the doctors so I assumed things were going as planned. A few minutes later Nathan arrived. I’m not quite sure what time it was but I got a call from anesthesia that they were done and reversing her meds to wake her back up. Five minutes after that our GI and surgeon met us in the consultation room. The surgeon explained everything went great. He didn’t need to make the extra incision he thought he was going to have to make. He was able to do everything through her belly button. We discussed her pain levels and the plan for feeding her while we were in the hospital.
It was over. Now we just needed to get to go see her. Because it takes a little more to knock her out, it takes her a little longer to wake her up. Mom had to leave to be able to be back in town to get the boys from school so she left before we got to go see Tinleigh. It took Tinleigh quite a while to wake up but we didn’t mind. We knew there was a great chance she wasn’t going to be a happy camper.
We finally got her to come around. She woke up calm. We were shocked. She looked at the splint with the IV on her hand and didn’t even make a fuss over it. She did sort of grab at her belly a few times but because it hurt. She didn’t realize there was anything in there. I think we got up to her room around 3 and our plan was to hook her up for the first time around 6. It wasn’t long before she was sitting up and eating ice. Still quite groggy from the morphine but she wasn’t about to let that stuff make her sleepy! So she ate ice and played on my tablet for a while and was content.I was just waiting for this explosion of the little Tinleigh I knew.
Around 6 we showed her, her button and explained we were going to hook her up. Just like Gage. She repeated things back to us and understood she had a button like Gage. The first time we hooked her up it was with pedialyte. It was only a few ml’s into it and she said puke puke. The problem was she had been drinking so much pop and eating so much ice her little tummy was already full. So I just stopped the machine and unhooked her. I wasn’t going to stuff her and make her puke. So I informed the nurse of what I had done and sort of told her how it was going to go. We waited a few hours then we hooked her up again. This time at a very slow rate and we kept her on it over night. When I say slow I mean like she was getting one ounce an hour.
Big negative. Not our little fighter. In this picture she appears to be praying. Instead she actually has both thumbs in her mouth and is dozing off. Refuses to lay back and go to sleep. It was 10pm at this point. She was no about to give in. Before this picture happened she did fall asleep sitting up with her index finger half way up her nose. We finally laid her back and she slept. Then an hour later she woke up! Ready to go again. She was quite cranky and loud. A nurse brought in a doctors play bag full of things. That occupied her for quite a while. Then her and Nathan had a fun time banging on the plastic roof on her crib.
Nathan finally had to leave so he could get up for work the next day. Once he left she wanted me to hold her. I turned the tv off along with the lights and I held her in the chair, barely. Because of my stomach she kept sliding off. By 1am she was asleep. For the next two hours I tried twice to lay her in her own bed. She would wake up and yell. So I knew that wasn’t going to happen. Problem was I couldn’t fall asleep holding her because I wasn’t sure she would stay on my lap. Plus we had IV cords and her belly was hooked up. I didn’t want to risk something coming out. Finally around 3am a nurse came in to check on us and I asked him to help me get her into her bed. With success we laid her down and she stayed asleep. I tip-toed down the hall and used the restroom while he pulled my chair bed out and made it up for me.
The worst part of all of this is that we had a shared room. We had the bed closest to the door and I wasn’t allowed to use the bathroom in the room because it was for the other half. So every time I had to pee I had to make sure someone was in the room with Tinleigh or make sure she was asleep. The other bad part was that we were the bad neighbor. I didn’t hear one peep out of the little guy next to us the entire time we were there. I literally heard him call out to his mommy once in the middle of the night. Tinleigh was the loud screaming bad roommate. Lastly, once we were in the room I started chugging water because I hadn’t drank much all day and my ankles were swelling. So during the night I was using the restroom constantly. Those nurses probably had a bet going on how many times I would go. Once Tinleigh was in her bed she pretty much didn’t move the rest of the night. Even during her status checks she didn’t wake up. I slept some. I kept waking to check and make sure she hadn’t moved because I didn’t want that cord in her belly pulling out. Plus every one knows how hard a hospital guest bed is.
Overall the day went better than I expected. She was mellow until she started fighting sleep. I believe that because Gage has a button her getting one was just normal to her.
She accepted it.
To be continued…