Feeding Tube Awareness 2014- Day 2

Today's topic: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.

Where have we tube fed? Everywhere. Over the past year Jillian's feeding schedule has varried a lot. She has been on feedings from 10pm to 6am when she first got her NG tube. We were home every night to have her in bed and plugged in by 10pm. While the tube stayed in all the time we could not imagine having to feed her anywhere but home with the feeding pump.
Fast forward a month and Jillian got a NJ tube. J feedings have to be slow because your intestines can not handle a large amount of food at one time like your stomach can. When we left the hospital with the NJ tube she was being fed 24 hours a day. That first 24 hours at home was a hard adjustment but we learned how to live with the pump and make it a part of our life. Over the next few months she was able to back down to 18 hours a day. In January she was moved to 17 hours a day. That is around the shortest amount of time a day you can do J feeds.
When your child is hooked for 17-24 hours a day, the feeding pump becomes part of your life. I think I have carried a a purse a handful of times in the past year but I carry her feeding tube daily. She started carrying her own backpack at around 7 months old and spends a lot of her day carrying her own pump.
Here are some pictures of places she has been fed:

In the hospital

At a Hotel

Tube feeding at the zoo

Tube feeding while mommy tries on clothes :)

Tube feeding in a tree swing

Tube feeding in the car

Tube feeding while playing with toys

Tube feeding while visiting one of her many great grandparents that love her

Tube feeding at a parade

Tube feeding while sleeping at an ice cream social

Tube feeding while camping

Tube feeding at fire works

Tube feeding in a swing

Tube feeding while riding a dinosaur

tube feeding at the beach

Tube feeding at a restaurant

Being goofy with her feeding tube

Tube feeding while fixing up our house

Tube feeding while at a Wisconsin fish boil

Tube feeding in bed

Tube feeding while doing the Children's hosptial walk/run

Tube fed while meeting princesses

Tube fed during a party

Tube fed at a store

Tube few at Christmas

Our Super Tubie!

Feeding tube awarness 2014- day 1

Today's topic: Why do I/does my child have a feeding tube? What positive benefits have come from tube feeding?

Jillian has a feeding tube because without it she can not sustain herself. Her first feeding tube was placed on February 9th, 2013. That was during her first hospital trip when she was there for 5 days because of vomiting. One of her tests showed that her stomach has excess amounts of gas in her stomach so they placed an NG tube to help the air drain out. The end was left uncapped and it drained into a diaper overnight. It is funny how little things through the journey pointed to the fact that this would be more long term. We love the nurse that placed her first tube and I remember the placement vividly.  She told us there there were two different styles of tubes they could place, one that could only stay in a day or two and the second was a kind that could be left in for a month. She said she put the month long one in just in case it needed to be in for a while. I am not sure if that conversation was preparing us for a month later but looking back it was interesting how everything happened.

Her first tube that was draining into a diaper

The details of 3 days in the hospital

A month later Jillian was back in the hospital. This time it was for a 9 day stay. She went in that time because of a horrid cough and she would cough so hard she would vomit. Her o2 levels were not in a good place and she was on oxygen for multiple days. After 4 days her o2 was good enough for her to go home but she was not gaining any weight and they can not send a child home with a diagnosis of "failure to thrive" who is not showing that they can gain weight. On the 6th day in we tried feeding her 1.5oz every two hours for 24 hours. There was still vomiting but it was the first time she showed any weight gain in 9 days. A young doctor came in and said that we would just have to keep that schedule up at home so we could go home. An experienced GI doctor came in and shook his head at that plan and said it would never work. He was completely correct. It was hard to wake her up to eat. She did not want to eat every 2 hours. She was not going to get the sleep she needed to grow and we were not going to get the sleep we needed to function. He said that we needed to look into a feeding tube. He said that in his opinion a feeding tube was the best option. The young doctor walked in and was surprised by the the thought of a feeding tube and just kept saying it would probably only be in for a week or two. I knew in my heart he was wrong but I just kept agreeing. Honestly, at that point I wanted something to help our little girl. There was so much vomit and she was so little. Something had to change. So one night, just before 10pm a nurse placed her NG tube. The next day we were taught how to care for and replace her NG tube. It was a lot to learn in a short time and it was kind of a mess getting the feeding pump lined up but it all worked out and that Saturday night we were able to leave the hospital with our little girl. At that point she was tube fed from 10pm to 6am and then bottle fed every 2 hours during the day with 1.5oz bottles.

 The next month was better in the fact that we knew she was getting food in but it was still hard. There was vomit most mornings and vomit all day. She spent a lot of time choking and I stopped sleeping because she was coughing and choking so much during the night. Her pediatrician told us that we needed a refresher in CPR because she was afraid that one night she was going to choke on her vomit and we were going to need to use CPR to bring her back. That is one of the biggest punches in the gut you can get as a parent. We knew once again that something needed to change. My mom and I took Jillian to her GI appointment at the end of April and told them all that was going on. The doctor came in and said that Jillian was being admitted that they were placing a NJ tube. An NJ tube goes into her intestines.

Life got a lot easier. We brought a different child home from the hospital. We continued to try bottles once a day and they still provided a lot of puking. By June we knew the tube was not leaving any time soon and made the choice to schedule surgery for July to have a GJ tube placed. Her surgery was scheduled for my birthday. We spent the morning at the zoo and then went over to the hospital. One of the hardest things was watching her go through those double doors into surgery and not being able to follow her. We went into the waiting room and a little while later the doctor came in and asked to speak with us privately. I knew in my gut something was wrong. The doctor told us that they were able to look around in her stomach however they were not able to place the tube because of where her stomach was in relationship to her rib cage. They stopped the surgery and told us that she would need to go in at a different time for an open operation. We were crushed.

A week later we were called and told that it would be a month wait before she would be able to go in to try again to place the tube. We then got a second call that asked us to come the next day. Later that day Jillian decided that she was ready for her new tube because she pulled out her NJ tube. Instead of going to the hospital the next day we ended up going in that afternoon so they could keep her hydrated until surgery. This time surgery went well. They placed in by making a 1.5in cut just above her belly button. She did great after surgery and we were able to go home the next day.

The day after GJ tube placement

Life since the tube placement has been maintenance. We have done multiple food trials that have all gone the same way: vomit. She has had aspiration pneumonia twice and the start of it once in the past 3 months.

What are her diagnoses?

Gastric reflux
Slow weight gain of newborn
On enteral nutrition at home
Feeding difficulties
Constipation
Vomiting
Cough Reactive airway disease Stridor

That list does not explain a feeding tube though. We highly suspect that Jillian has a gastric motility disorder. She will eat something and it will come back out hours later. She will be placed inpatient again in March for more testing to verify the gastric motility disorder. Currently Jillian's stomach still does not handle food inside her of it and she could not sustain herself by eating orally. She is 100% tube fed.

What is the benefit of her having a feeding tube? LIFE! Before Jillian was starting to fall behind developmentally. She did not roll over until she was 7months old. She was so tiny. At one point her weight for height was at the 0.00 percentile.  She fell off the charts and was not able to bring herself back. For us we see the tube as the gift of getting to know our amazing little girl. We are so thankful for her tube. We are thankful for the doctors who have worked so hard to help our little girl. We are so grateful for God carrying us through this last year. We are grateful for all of our family and friends that have walked this journey with us.

Feeding tube are not just for the elderly. They are for an active little girl who has a bright future ahead of her.

Here is our video documenting the last year of her tube feeding adventure:

Why is that an extra $20?

It has been a weird week... Monday was a long day, If you missed my blog post about Monday here it is. I was just feeling really overwhelmed.
Tuesday went on like normal and we hosted our first connection group for Church at our house. It was small but good. I have missed a good Bible study since my collage days... however I'm not sure any group will ever be anything like that group of girls. I led the study for a while at our apartment and it started around 8pm I think and many nights it would go until 2-3am. Frequently I would go to bed at some point and whoever was the last to leave the house would lock up. I miss the girls and our weekly fellowship. Now we are all over the county, most of us married, several have kids, we have grown up and no longer stay up until 2am for the fun of it, but we are all still connected in being sisters in Christ.
Wednesday was the craziest day of the week. It was snowing out in the morning and the roads were bad. It took me around 15min on hwy 12 to get from Pell Lake to Lake Geneva (should take about 5). 12 was a mess. There was only 1 lane (instead of 2) and traffic was going 35mph instead of the 70mph it normally goes. I called work about 6:45am and said that I was going to be late. I was scheduled to start at 7, however I was still a long way off from getting there. They said that was fine because there were not many kids and there was an accident that just happened outside the building. By the time I got there the police were directing traffic through our parking lot area to get them off hwy 12. It was a mess. A car hit the power line outside of the daycare. Around 7:30 we found out that we would have to close because they were going to have to shut off power for hours and daycare policy is that if you are without power for more then an hour you have to close. Well by 7:30 the daycare had already been open for an hour and a half and there were kid there so all of those parents had to be called to come pick up their kids. Around 10am the last of us staff left a building that was completely dark.
Jillian and I then took a trip up to Children's... see when we were there on Friday I forgot my wallet and thus had no money to pick up her medication. They are only open until 5pm Monday-Friday. I was trying to figure out when I was going to get up there to pick up her med and an unexpected afternoon off provided the perfect opportunity. We got up there without a problem and got her med. When we went to check out the women told me $73.12! I looked at her stunned. In the past this med has only cost us $56. That was almost a $20 jump in a med that already costs a lot. At that point there was nothing left to do but pay the extra $20.
The jump in her med price has now pushed her monthly out of pocket med cost to around $150. This does not include the cost of extra meds she goes on when she is sick. It baffles me that it costs $73 for an antibiotic that has been out for decades. Oh the costs of having a, as the medical community describes her, "medically complex" kid.  I would not trade my medically complex kiddo for the world though.
I did today start looking into the process of a secondary insurance for kids with a lot of medical things going on to help with the costs of it all. I'm so torn about it. Part of it is pride. I feel like someone else could always use help more then we could and thus I would not want to take it away from them. Government programs are low on funding to start with and I don't want to use it unless I have to. I always feel like there is someone worse off. The other part of me is so scared that she will not qualify. The qualification packet is long and legal terms and I consider myself an educated person but it talks in circles. I sent an email to a person about getting the process started and she said she needed the typical info, name, birth date, address and diagnoses. I sent Brent a text that said I did not know where to start. He said to give the women the info she asked for... I replied back that I could except the diagnoses line is "tripping me up, and kicks me down and then punches me in the gut." Part of the reason we have had some issues with our insurance covering some things is because she does not have a label other then failure to thrive and reflux. Those don't qualify you for anything. Those don't mean much of anything in relationship to what Jillian's symptoms are so I am afraid that they will look at that and automatically disqualify her. We will see. I'm still struggling with point one of this paragraph...

Yesterday we met my mom for dinner. Jillian's formula gets shipped to their house so we needed to meet to get it. I brought along 10ml of sweet potato for her to taste with dinner. She took it pretty good. Then a few minutes after she got done eating she started to scream. This is the Jillian "this hurts" scream. I held her and she continued to cry. She calmed down a little and would get distracted playing with something but then fuss again. Anyone who has eaten at a restaurant with Jillian knows this is super strange behavior since she loves restaurants because she can watch people. My mom held her for a little bit so I could eat and then I took her back. Her pants were wet in a weird spot. I looked an noticed her J port was open. That is super odd for that port to be open especially so close to a tube change. Mom and I took her to the bathroom and changed her clothes and diaper. There was green bile everywhere. It was gross. My best logical guess is that it popped open after she ate. The poor girl. Something strange has happened each time we have fed her sweet potato...

Well, right now she is napping, and I have exhausted today so I might try a nap too. It has been one of those weeks that completely drains me. I know that there are harder times then others with Jillian and that some times are harder on me then others. I know this will be at a better point again. It is not that life is bad right now... in fact we have our little girl so life is great, I'm just exhausted... I guess I should cut myself some slack and not beat myself up for being exhausted sometimes.

I hate food

Yup, read that title again.

Ok, I love my food. I love carbs, and chocolate, and ribs, and steak, and vegetables. I love to cook. I love to bake. I love my food.

Over the past few days I have come up with the realization that I don't have a good relationship with Jillian's food.

It is amazing that Jillian does not have a food aversion. Most kids who vomit like her do. Her doctors are amazed that she does not. Many of them don't believe us when we say that she does not have a food aversion. The only times she shows signs of a food aversion is when she starts vomiting multiple days in a row. Then she starts to not want her meds but once the vomiting is over she is willing to take them again. She also shows signs when we try new things and you can tell it hurts her, like when we did the trial with rice cereal. But otherwise she is fine with putting things in her mouth and giving them a try.
We have worked HARD at her not developing a food aversion. (not saying that parents' who's kids do have aversions don't work hard). There is a reason we don't give her enough food by mouth so that she vomits. We know about how much her stomach is able to handle on a good day and we make it less then that. The hard part is that the number that she can handle varies by day and sometimes she can not even handle her one med which is 1ml.

But while Jillian most likely does not remember the days of a vomit covered house, I do. I know what that was like. NO ONE wanted to be here some days. There was puke everywhere. There was a lot of crying. There was begging a child to eat who was too exhausted from just trying to eat. There were towels all over our house to try to catch it all. There was gagging, and coughing and choking. There were times you would just scream at her to take her next breath. There were friends and family who had children of their own that would observe some of the things that Jillian did and would get a worried look on their face. Early Jilli life was hard. Don't get me wrong, there were great happy times too and a large part of me tries to block out the vomit and choking but it was what we lived. While she might not remember, I do. I remember the sleepless nights.

I was trying to figure out this week why every part of me feels drained. I feel exhausted at a different level (I gave up sleeping with Jillian a long time ago). I feel burnt out and I could not figure out why. Nothing had really changed. I was getting no less sleep then normal. Everything was close to the same, but we added food tasting into the mix. I remembered that this is how I feel when we try something new with Jillian. Why? Because I see what it does to her. I see the chunks in the drainage bag hours later. I see when she spaces out because she is just trying to get it to go back down. I hear the cough. I want to be excited for her to try new things but it is hard. I see the day to day that the doctors don't see. I see what them prescribing this new thing does. I see how it changes our lives either for good or for bad. I live the ups and the downs. To me it is more then statistics on a page.

I see the weird that comes of it. Yesterday Jillian's teacher came to get me because she had a weird orange stain all over her white onsie. She about 7ml of sweet potatoes on Monday night. I checked her over. Her g port was closed. Her j port was plugged in. She had not pooped all day. I had picked out the onesie for her to wear. Brent put it on her. She had already had 2 diaper changes at school and no one had seen this large orange area that smelled like milk and sweet potatoes. The milk we figured out that her milk bag did not have the cap screwed on all the way so some had leaked out but that would not cause orange. The mysteries of Jillian. Where did it come from and why did anything smell like sweet potatoes over 15 hours later? I feel like I need to be Nancy Drew wit her some days.

I have a respectful love for Jillian's tube. I have that same love for her Elecare. Hopefully someday I will have a love for her eating orally too, right now I guess I am in this protective mode for a reason. God granted me the want to protect her for a reason, even if right now it feels like I am having to protect her from food. 

Speech eval round 2

As I was putting Jillian to bed last night my comment to Brent was "She did not poop today... we ended antibiotics yesterday, she will now get backed up, we will end doing a lot of things to get her poop and possibly have to take her for the doctor for it, she will start pooping again, we will have a normal few days, then she will start vomiting again, she will get pneumonia and an ear infection, she will go on antibiotics again, poop like crazy for a couple of days and then we will be back here. It's a month long cycle that we have lived in repeat for the past three months... but hey at least there is constancy."  You have to give consistency some credit right?!?!?!

Yesterday we went for her speech eval at children's. We were going to have a GI appointment too but they called on Wednesday and cancelled. We still had to go into GI though and do a weight check.

Last vitals on 1/6:
Length: 28.3in (11.76 percentile)
weight: 9.78 (21.56lb)

Yesterday on 1/31:
Length: 28.7in (13 percentile)
Weight: 9.66kg (21.3lb)

The nutritionist will be calling to let me know of any changes to her diet. From November to December she gained too much weight on the EXACT same diet and now she lost.  We are not sure if the loss is due to her being active or her having been sick or if it is just her goofy digestive system. She has been on the same diet for months and she has never made the same gains/loss any month. Her growth charts in spots looks more like a heart monitor.

Then we went to speech. I filled the speech pathologist about Jillian history. She asked me why we were there for a re-eval and I told her that the gastric motility dr was mad that we stopped oral feedings and he said we needed to come see her. I said that he told me that it did not make sense for her to be aspirating on vomit if she had a good swallow study... her comment "he knows better then that." She just kept shaking her head and talked about a few studies that show that what I was saying was correct. She said she agreed with our choice to pull bottles because of the risk of pneumonia and that she thinks that was a good idea. She felt around Jillian's mouth and said that everything was normal for a child who did not eat orally.
I then spoon feed Jillian 2 small baby spoonfulls of formula. The first one she let roll out of her mouth but the second one she took like a champ. We then tried sweet potatoes. She took the first spoonful and let most of it come back out but the second one she did just fine. We are not talking about much food here. Less then a tablespoon amount total. We then kept giving her the spoon but with nothing on the top. She took it like a child would who is learning to eat with a spoon. She wanted more but we knew not to push it or there would be puke. She did a great job!
After she was done we talk about how she has all the oral skills and that this is a GI issue... what have other specialists said:
Neurology: this is a GI issue
ENT: this is a GI issue
Pulmonology: this is a GI issue
Genetics: this is a GI issue
Birth to 3: this is a GI issue
Speech: this is a GI issue

GI keeps sending us to other people but all of them keep saying that this is a GI issue that is affecting other areas.I was not expecting to hear any differently yesterday either.
Speech's recommendation is that we can give her food to play with at meals but not give it to her to eat orally. That we can do tastes with tiny amounts but not enough for her to get any volume. She said that if she is having trouble to stop.
On the way home from speech she must have vomited in the car because there was orange all over her white coat. About 1/2 way home she started moaning for several minutes. That is not like her at all. She normally sleeps the whole ride home but instead she had a hard time sleeping. When I got home I vented about 7-10ml of orange out. At night when we hooked her drainage bag up we got orange globs out... 8+ hours later. So, typical Jillian motility...

Orange Chunks in the drainage tube

This post made me really nervous. Why? Because I am always afraid that then we tell people Jillian is doing a food trail they will think that she is able to eat. When I talk about her trying baby food I am talking about the fact that she ate less the a tablespoon and she vomited and we got some back out hours later. We are not talking about a sustaining amount of food. We are talking about an amount the still makes it so she is 100% tube fed. We are still talking about less then a tablespoon amount just so that she can learn the skills normal to a kid her age but not take in enough to make her puke. We are working hard to keep food a positive thing and for it to stay positive we have to do what we can so that she does not associate food with pain. I just don't want people to think that because Jillian plays with a spoon that has a little favor on it that she will be off the tube soon or that she is able to eat normally. That is not the case. Food trials are one of the hardest things emotionally for me. I see her in pain. We experience vomiting and moaning. The fears of choking are very present. I can't explain why food tastings like this bring out so much emotion in me, but they do. So, no, we are not any closer to her eating orally for calories, but I am ok with that. I was not expecting that we would be after speech yesterday.  We are blessed that she has a feeding tube that takes care of her need for nutrition. She is well nourished and happy and that matters a whole lot more then eating orally.

She found a Doc blanket on clearance... she carried it through the store

She can be such a ham!

She and daddy were dancing

What is more fun then a chair in a tent?

She loves her dolly

Cold days = Play days

I am so blessed that I was able to spend Monday and Tuesday this week at home with Jillian. Monday school was closed because of drifting snow and Tuesday because of the snow. Well for those two days I got the best gift I could have asked for... time with Jillian. It was amazing. We had not doctors to run to, no place to be. We spent two days in our pajamas. I was able to get somethings done I did not otherwise have time for and was able to spend time with my girl.

Don't notice my hand holding my tube... right???

Oh... and now let me look at it.

OHHHH

Hi mom

The Daniel Tiger Theme song came on... its amazing!

Just so sweet!

Look its a Mickey book

Time to close my book

Peek!

No, I was not just in a bucket

Lounging in my highchair on the floor

Its princess time

Look, its a diaper

OHHHHH... diapers are funny!

I just spotted that mommy left my pump out of its bag

Its my pump... I need to explore this

No I read big books!

I found another diaper to play with

Our little doctor

Bath time!

Making a feeding tube backpack

I have wanted to make Jillian a new backpack for her feeding tube for a while because:

1. The standard backpack does not look little girl cute
2. I wanted a spare that she could carry when her other backpack needs to be cleaned (milk spills, poop, ect.)
3. Her black backpack fell apart last week with a big hole that is not going to be easy to fix

So this weekend I pulled out my sewing kit and modified a backpack.

Supplies:

1. Small backpack. We found one on clearance at JC Penny several months back for less then $10. It is Minnie Mouse and super cute and the straps fit on Jillian and me!
2. Black thread
3. A swivel Hook  . I got this one from Joann Fabric. If I make it again I am going to find a swivel hook that is shorter in length, but this one works. 
4. 1 inch strapping . I bought it by the yard but you can also just buy a package. You only need a couple of inches of it.

I choose to hand sew it. I own a sewing machine however this was such a small job that it was easy to just do it the old fashion way.

1. Make a loop of the strapping around the fastener of the hook. 
2. Sew together the strapping just above the hook. You want this part tight. All you need is the simple basic stitch that they teach you in middle school.
3. Sew the strap to the top of the back of the backpack. 
4. That is it! 

 Man, I don't know why I have pushed off doing this for so long. Now I am going to look at making a second backpack for her to have as a back up. The trick is finding a backpack that is small enough for her to wear and carry.

Clip in modified tube feeding backpack

Inside her tube feeding backpack