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!

The times

So this week I made a new sheet for all of the people that take care of Jillian. I make them so everyone knows how to best take care of Jillian. Over the past year I have made several of these sheets with revisions of her different needs. Today I took a walk down memory lane and looked at some of the old ones. Here is a look at some of them. If you click on the picture and then right click on it and hit view picture, you can read what it says. It is easiest to view on an iPhone or iPad. 

The first one

April

August

Health update May 21st

Well we have been doing this NJ tube thing for a little over a month month now. Before the NJ she was on an NG for 6 weeks. So Jillian has been tube fed for 10 1/2 weeks now. For us it is feeling kind of normal. I was thinking the other day that it will almost be weird for us to have another child some day and for them to (hopefully) eat like a normal 5 month old. But that being said, even though the 2am food changes are hard I find that little tube to be such a blessing. At the rate she was loosing I could not imagine where we would be without its help, and to be completely honest if I lived somewhere other then here, I don't know that I would have a little girl to curl up on my lap. That is a hard thing to grasp sometimes. So no my baby does not eat like a normal baby but for her that tube is the best thing for her so I have come to have a form of respect for it. In fact if someone told me today that they where shutting the pump off and taking the tube out at this moment, I would fight them because I know we would go backwards (even though I doubt myself sometimes about making all the "right" choices).

Before I give Jillian's current numbers for things here is some math conversions:
1/2 oz= 15ml
1oz= 30ml
30ml/hr means that she is getting 1oz in an hour

 So here is an update of the different health areas of Jillian and how she is doing right now:

Nutrition:
She gets 38ml of 27 cal breast milk every hour. (Brest milk is fortified with Alimentum)
She is on the pump for 22 hours a day.
She gets 836ml of milk a day. That is 27.86oz.
Her pump is increased by 1ml/hr every week. So next week she will be running at a rate of 39ml/hr with a total of 936ml per day

Water:
Jillian is offered 10ml of water 3 times a day (30ml total)
She finishes one of the 10ml bottles about once a day (sometimes less, but rarely does she every finish more then 1 bottle a day)
The other bottles during the day she either completely refuses or takes somewhere between 1-5ml. Most days she gets somewhere between 10-15ml.
If she does take a bottle well it is normally one of the bottles that she gets that is accompanied by her anti-acid meds. We give her some water first and then give her the meds (that taste like cherry) and then get her to take the rest of the water. This method only works for about one of the two times a day she is given meds/water like this.
Her drinking out of a bottle has become a lot less coordinated. She use to eat beautifully 45ml at a time. Now she starts off a little uncoordinated, becomes a little coordinated sometimes and takes water or loses all coordination and does not get much in. Sometimes she will become a little coordinated and then lose all coordination. Water frequently flows back out her mouth while she drinks.
She does lick at the syringe that she gets her meds from but she does not have to suck them out and it is a different shape then a bottle nipple and a different texture.
I am not sure if she likes the taste of the water. I have  tried it room temp and cold that that does not seam to matter if she takes it or not. When she took milk by mouth it was room temp.
She is given water when she wakes up (with her med), around 7pm (when her pump has been off for an hour), and at bed time with her med

Reflux:
The only thing Jillian has to reflux is the little water she drinks. She does still choke on the water coming back up some days. 10ml is not much to be going in so it does not come back out like it use to.  She does still cry sometimes after taking water and has a hard time burping after drinking sometimes.

Poop:
Jillian is currently on laxatives everyday. She is currently pooping about 1 time a day and it leaks out of her diaper most days. The past 2 days she has had really bad gas again which she normally gets when there is poop "stuck" in there so I am waiting for an avalanche. She has been on laxatives daily since May 6th and we have yet to have a day that we are drowning in poop and she has not pooped more then 2 times in a day during this time period. Jillian went on the laxatives on the 6th because she was pooping blood and then went a few days without pooping.
Sometimes when Jillian poops she is obviously in pain before she poops and sometimes it is a lot work for her to poop. Sometimes the poop is looser and sometimes it is thick.

Pee:
This area seams to be working good! She pees multiple times a day. She hates a wet diaper though :)

Sleep:
Jillian sleeps from somewhere between 8-9pm to 6am. (She is oblivious to the 10pm and 2am food changes)
She sleeps in a Rock-N-Play
She sleeps swaddled so she can not get her tube
She naps off and on during the day when she pleases

Eyes/nose:
I believe Jillian is currently suffering from allergies. Her eyes are puffy and goopy. She is sneezing off and on and has a cough that can last for minutes at a time. She has been pulling at her one ear a lot and when she pulls at her ear she rips off her tape pulling on her bridle. She is also rubbing her eyes a lot and has cut around her eye twice now (baby finger nails are so hard to manage). Drinking water makes her cough worse. 

Developmentally:
Jillian has figured out how to get her passy and toys in her mouth most of the time when she wants to. She is not perfect at this yet, but working hard. She loves he passy!
She has started reaching for things
She lifts her head when she is on her belly
She will laugh sometimes (not very often, only happened a handful of times)
She likes to babble sometimes. She will go days at a time without babbling and then start back up again.
She loves toys that are part hard and part soft
She is not a fan of toys that are all hard because they are harder for her to shove in her face.
She loves blankets and likes to "yell" at them before she smashes them into her face.
She does not roll over from back to tummy or tummy to back.
She does kick her legs while she is on her belly and that moves her a little.
She will look at you sometimes when she calls her name and looks at noises sometimes.
She is happy when she is not in pain :)

So that is what is up with Jillian right now! Our next big dr. apt is June 7th.

Jillian's 3rd Month

I have wanted  to get Jillian in for photos for the last month but between time and money it has not happened, so I decided to share the photos I have taken with my phone with the world instead! I have decided that I want to start taking more of her photos with my camera since they are better quality... however my camera battery just died. While I like the features on my camera I will never buy the same kind again because it has a battery pack and I cant just replace the batteries with AA batteries when they die. This leads to me forgetting to charge my camera so more often then not I have a paper weight with the abilities to take photos... if only it turned on :)

A new floor

Today we had a 12:30 visit with GI to discuss Jillian's choking and vomiting. She proved to us once again this morning why we needed to come when she puked everywhere for the second morning in a row. My mom joined me at the appointment. We did the typical first. A weight check (she is up to 12lb 12oz), length (24im) and head circumference (I did not pay attention...ops!). Then we were visited by someone who I think is like a CNA or something. She asked a few base questions and then a nurse came in. I filled her in on everything that has been going on. She then left and reported everything to the doctor. The doctor came in and verified what the nurse told relayed to her and took a quick look at Jillian. She then said that we could not continue like we have been and that she needed a NJ tube (this is a tube that goes into the intestines  instead of the stomach). She then said something about getting paperwork started and a bed. My mom and I looked at each other a little confused about what exactly was going on. After a few minutes the doctor came back in and said they were securing a bed for her to be admitted and that we needed to head to radiology to have the tube placed (Because these tubes go into the intestine they have to be watched being placed). We then left GI and headed to the hospital section. (Children's here is all connected, GI is in the clinic building and radiology and patent room are in the hospital. The two are connected by a skywalk)
We got to the skywalk check in desk and GI was calling my cellphone. They said that radiology had a 2 hour back up and that a bed was not ready for us either. We had not had lunch yet so we decided to stop at a bathroom and head to cafe West in the hospital. I barely got a few bites into my lunch and GI was calling again letting us know they had a bed secured and once we were done with lunch I should head to admitting. Within a few minutes of that the loudspeaker in the hospital announced that the parents of Jillian needed to call a certain number. I then went to the desk and asked where a phone was to call that number. They told me there was a phone around the corner. I did not find a phone around the corner but I did find the admitting desk. I then went and checked in with them. They said that it would be another 10 minutes before her bed would be ready but that I needed to bring Jillian into the admitting office to get her a name badge. As I was walking out of the admitting office I was greeted by someone from radiology. Apparently admitting was not the one who paged me, that was radiology and they came looking for us since I told GI that we were in the cafe. She told me they were ready now for Jillian. I ran Jillian back to admitting quick to get a band and then headed to radiology. We checked in (this took a long time because the orders were for us to have the test done once we were in the hospital and she was still yet to have a bed) and had us wait. They then called Jillian and I back to a work room where many people came and explained what would be going on and I signed consent. Jillian was not too pleased with this process of people talking to me and let us know, however they provided sugar water for her passy so she was tolerating it. I then had to hand my baby over to complete strangers and go back to the waiting room with my mom. It took a lot to not sit in the waiting room and cry. My mom and I watched Lady and the Tramp as we waited. Eventually the radiologist came back and said it went well and she would be out shortly. After a while a nurse came out with her and escorted us up to West 11.
Once on the floor we had a care partner come in and start Jillian's vitals and the nurse came in. We then sat for a long time seeing no one. After a while the nurse came in and went through the long list of admitting questions. We also had the first resident come in and do a physical exam on her. After a while again a second resident came in and took Jillian's history and did a physical exam. Around 7pm we were finally given the go to feed Jillian a bottle of 45ml. She took it like any other bottle (not like she had been starving, which she should have been since she had not had any food since 11am).
It is now around 10:45pm and we are still waiting on orders to be figured out for feeding. They are talking about a continuous feeding schedule where she is hooked up for 21 hours of the day with three 1 hour brakes. Jillian is sleeping comfortably like none of this is going on, which is a blessing that she is not screaming but it is also concerning that a child who should have been hooked up to a feeding tube for 3 hours now is not asking for any food, plus she missed one of her bottles today.

It is now 10:50 and the nurse just came in wanting to start her on just plain breast milk going into her tube because she thought she needed 24 cal Alimentum. We explained to her how you fortify breast milk and I looked up the recipe online for 24cal. We then mixed it and she set up the pump (we had to explain to her how to set it up and still there is a bag with  150ml in it with a pump set at 3000ml and a bag with a ton of air in it). We are running at 30ml/hr. Hopefully this helps! I will try to keep posted as things go on. We have no idea how long we will be here or what the plan is right now. There has been a little talk about a few tests that if they decided to do them would have to wait until Monday because the appropriate people are not in on the weekends but we will see. For right now we wait... and try to get some sleep!

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!

The math does not add

Sitting around on my day off waiting for the supplies truck to arrive. It is like getting cable installed or a new appliance delivered... they will be here sometime today... I am looking at having it changed so supplies are delivered to my work so I don't have to spend every-other Tuesday at home, plus the next two Tuesdays that they are suppose to deliver Jillian has a doctors appointment. 
So while we wait we are getting other things done. First thing this morning Jillian had her ultrasound of her kidneys. I was surprised at how well she did. For the other ultrasounds she has had she has screamed like crazy. Today she kept a close eye on the woman but she only made a few little noises and enjoyed grabbing the cord for the wand and holding onto the washcloth the tech used to wipe up her one side after she was done (thus getting the goo all over). I'm not sure if it is the fact that they were not pushing on her stomach today or if she was just in a better mood, I'm just grateful it was not a scream fest :) They said her doctor should get the results today or tomorrow.

We also got our first call back from GI today. I called yesterday to let them know the weekend went well as to see what the plan is now. They called back today and said that the doctor wants us to run the pump for 10hours instead of 9 at 42ml/hr. I thought about that as we went on with the conversation about how often Jillian is getting weighed at a doctors office and before the nurse hung up I asked her how much we would be putting in the pump during the 10 hours and she said another 42ml. This made really question the new plan. Jillian had a hard time with an increase of 15ml, how is she going to do an increase of 42ml. Also Jillian eats at 8am, 11am, 2pm, 5pm and 8pm, to get 10 hours on the pump and me still get to work on time we would need to start the pump at 8pm, however she gets a bottle with 45ml in it at 8pm. I know that she will not be able to handle this schedule. The nurse then says that we might cut out her 8pm feeding then, however that puts us -2ml instead of up 15ml like we were trying. She then decided that she would send nutrition a note and they will call me. So we wait...
Jillian has been having a good day. She had a good size choke this morning with her bottle and food ended up coming out (just as we were getting ready to walk out the door). After we went to the ultrasound I stopped at work to pick up milk because I had forgotten everything I pumped yesterday there. When we got back I put her in her swing so I could eat and pump. After I was done pumping I came back into the livingroom to a nasty smell. I had just been working on cleaning Jillian's lunch box from thirty-one bags that had a bag of breast milk open in it this weekend (note, they are not liquid prof and liquid will leak out everywhere from them). I thought the smell was bad food from this weekend since we had been gone at a wedding from Friday afternoon til Sunday night. I started looking for a dirty dish and came by Jillian to realize the smell was coming from her diaper. These days I have a love/hate relationship with her poop. Since going on fortified breast milk she does not poop consistently so it is a relief when she poops however the smell of it now is a bit much to handle!
Well it is just about time for the 2pm bottle. I need to wake the little girl who is sleeping on my chest