Dear tissue

Dear incision,

You were healing great. Everyone was impressed by you, until today. Now you don't look as nice. I would like you to fix yourself and go back to not having granulation tissue. I was so proud of you. 

Sincerely,

This tubie momma

The red tissue should NOT be there. It is not an awful case but it could keep growing :( it is the body's natural way of trying to heal by covering something with skin, it just is bad when there is a tube that can not be covered over with skin. 

In other news I'm feeling better today. I am a functional person again. Dan and I worked on child proofing the house today. The gate is up and I put some outlet covers in a rearranged some things. She is so close to crawling. 

Schedule

Ok this is sad... Not depressing sad, just hmmm sad. 

I talked with children's central scheduling today on my way home from work. I needed to schedule Jillian's gastric emptying study scheduled. We went through the normal 20 questions about where we live and such. We found a time that work and scheduled it. She then said she would tell me where radiology was but that she noticed in the chart that we basically live there so she was sure we knew where to go. Yup, I know right where to go. I told her sometimes we joke we are going to have to change out mailing address to there. She just laughed. 

So here are our first three Fridays in September 

6: gastric emptying study and pick up walk packets

13: tube change

20: GI appointment 

It is kinda like our second home. Is it weird that it kinda feels like home?

On a side note, today my allergies are kicking me down. I feel miserable. Brent is working late with his massive work project so Dan made me mashed potatoes for dinner. Jilli and I are curled up on the couch. I don't think she is feeling great either. She has been curled up on my chest since we got home from work. Normally she is cuddly but not for this long. I will cherish this cuddle time 

Poop,, walk, weekend, tooth and moving

With Great Grandma Schofield

Poop:
Oh poop! Like I have said before, it is either everywhere or nowhere. This is very seldomly  an inbetween. As I was talking with Jaime the other day a realization sunk in. When we do anything to change things with Jillian she stops pooping. I have noticed that before but forgot about it, thus forgetting to ever tell her GI dr about it. I think I mentioned it once inpatient but never to the right dr. So things like rate increases, med changes, sickness and what is in her milk makes her stop pooping until her body adjusts. Sometimes it is just a day or two and sometimes, like now, it goes a week or more. She only pooped twice last week and not a ton until today. For someone who has been on daily laxatives for several months she should be pooping  everyday.

Walk:

With the NASA bear Uncle Seth got me

11 people have signed up to walk or run with Team Jilli for Children's Hospital of Wisconsin. We are excited. Brent made our team logo this weekend for the back of out T-shirts. They turned out cool! We are so excited. Now to raise money! I would love to raise $2,000 to get the fleece zip up. It would be really nice for nights when the hospital is cold.

Weekend:
Seth came home! He has been gone for a few months and it was so nice to see him again. He was to arrive on Sunday however they made great time on Saturday and decided to drive it straight through. They got back around 1am and we all waited up for him. Sunday after church he wanted to go to Wing Stop. It was a fun lunch with my parents, Seth, Dan, JR Heather, Eli, Jolie and the three of us. Sunday afternoon the boys through plastic and the girls ran a few errands. For dinner we had good Kenosha Pizza. Then we headed home.

Tooth:
Today Jilli is working on pushing out her third tooth. This time it is her top tooth. You can see the tooth under the gum. She is in a pretty good mood for popping a tooth.

Moving: 

Jilli is so close to crawling! She is scooting on her belly sometimes. Most of the time it is backwards. She is starting to get quicker. Sheis determined to crawl! She has also started rolling consistently from her belly to back! Happy Dance

Running:

Jillian and I have started running. Seth and I was to do one of the RUNDisney runs. That takes training. I am determined. If running= Disney, I am all game. My uncle noticed a running stroller at a rummage sale this weekend. He called my mom and she went and picked it up. Sunday I got running shoes. On Sunday Seth, Jilli and I went for a run by mom and dad's house. On Monday Jilli and I found a park in Lake Geneva to run at. It is by a corporate park and the path runs into the corporate park and around a retention pond. On Tuesday we took Brent there and he walked the trail with us. We are going to get fit! Sadly with all this time outside my allergies are kicking my butt today!

Eli pushing the stroller

In her new stroller after our first run

Uncle Seth, I'm going to NASA with you!

Jillian's 7 month video

While Jillian was 7 months old she went to the zoo for the first time, had two surgeries, stayed in the hospital for 3 nights, had and EEG, and fell in love with her stuffed Curious George at grandma and grandpa's house.

GI 8-13-2013

I'm going to start this off by apologizing if I sound crabby in this post. I am kinda in a crabby mood today. I have weaned down a lot of my milk production and that comes with a return of some crabbiness... I'm trying hard not to be crabby and be grateful for everything I do have... somedays bodies just get in the way.

As Jillian and I were walking out the door this morning she was dry heaving and then puked yellow again. She made some puking noises in the car too. She rode to the appointment in yellow stained clothes. But at least that gave me something to show them...

in the jumper that she rocks in

The basics:
Weight: 20lb 4.7oz
Height: 26.65in

The site:
The GI dr agreed that the site looked good. There is a little gradulation tissue that has formed (we noticed it Wednesday night) but she is not worried about it because there is so little. She said otherwise it looks really good. She said the site is a little red but that is a mix of healing and being in contact with tummy juice.

Dressing:
She looked at how we had it wrapped and said that she had a better way. She had this stuff called Sepro Net that is better then the Ace bandage going around her body. She said that a wrap can cause compression but that the new stuff holds everything in place without a squeeze. So far I really like it. They gave us two pieces to try and we are already down to one because she had a blow out poop this afternoon. We will probably look into getting more.

with SePro Net on

Meds:
Since Jillian has gained weight again she needs to go up on meds. Instead of taking 1.33ml of acid reflux meds a day she will now take 1.66ml. I'm sure she will be happy. The nurse was going to call in the order to our mail order pharmacy.

Yellow puke:
The dr said the yellow puke is stomach juices. She said that unless she is puking them every day we should not worry. She is currently puking them 2-3 days a week. I was liking this not puking thing. I'm not a big fan of yellow spew!

Pee:
We talked about the fact that Jillian does not pee during the 6 hours that she is off the tube. She said that is fine. I'll take her word on it.

Feeding Schedule:
For the next month Jillian will stay on the same feeding schedule she is on currently.

Testing/Emptying:
I brought up that one of the last times she was inpatient they talked about a test for delayed gastric emptying. She said that Jillian puking gastric juices and the fact that she pukes so long after she eats proves clinically that there is delayed gastric emptying. We are going to go ahead and do the test for numbers. We are going to talk about ways to help the emptying next month. One thing she is talking about is putting her on erythromycin (an antibiotic)  long term because its side affect is speeding up gastric emptying. A part of me is nervous about putting her on an antibiotic long term. This part for me today was huge. It gave a little more of the puzzle and it is something I have suspected for a while but no one has confirmed. Gastric Emptying does not have a quick fix especially with kids like Jilli.

Tube Change:
We talked about what surgery had to say about the site. The dr. said she would put in an order for a tube change. I called IR after we left and they said that nothing in the notes said they could do the tube change this early post op so they needed to call the surgeon and double check before scheduling anything. I am waiting for a call back.I want to try to schedule the tube change and gastric emptying test for the same day since they are both done in radiology.

"Blank" Time:
I completely forgot to ask about this today!I left a message for the nurse asking her about it along with asking for more of the netting. I'm not sure what they are going to say. My guess is that we will just wait for them to hopefully get better... They are not there unless she eats or is refluxing a lot.

Tastes:
Jillian is going to get to start "tasting" baby food. When I say taste I mean an candy button sized amount of food a day. It is not for caloric value or nutrition, it is just for Jillian to begin to know what other things taste like so if one day she can eat she is know what food other then milk tastes like. I'm excited she gets to taste but a part of me is worried. With all of my food allergies, introducing foods to Jilli might be interesting. I guess she really wont be getting much at all at this point so I should not worry... right? I'm still not sure how to start this tasting thing...


I think that is most of the appointment. Today I needed to run to work and get the several hundred dollars of medical supplies I forgot there... ops! Also after the appointment we walked the mall and went to Buy Buy Baby to exchange the sun shade we bought Monday for one that actually worked. I am liking the new one better already and I think Jillian's eyes are too!

I have ALL the toys!

more yellow spew

Yellow, my current least favorite color. I can't say I have ever had a defined least favorite color before, but it is definitely yellow right now! Why yellow? Well it leads back to the two Jilli P's.... Poop and Puke!

Everyone sleeps with their head arched back from reflux right

Poop:
Yup, Jilli poops yellow... interesting...I know! Probably more information then you wanted to know. (Sorry if you are eating while reading this) This week Jilli's body has decided that pooping daily, while on laxatives is not necessary. I however disagree and so does the little girl who spent an entire day pushing out liquid poop. I kept getting up last night to her moaning and grunting. The poop finally flowed this afternoon. She had not had a good poop since Monday. Getting her to poop at all is a balancing act. Too much laxative and it is everywhere all the time... too little and there is nothing. And we are talking about a 0.1ml difference some days however the magical number in the flow vs explode equation is a changing variable. This is oh so convenient. Magic number tomorrow... who knows!

Puke:
Today Jillian graced the world with more yellow highlighter puke. Still not sure what it is about. I know it is stomach juices, but why are they randomly joining us outside her body? I guess it is a good thing we see GI at 8am. She was fussy most of the day today but I am not sure if that has to do with the neon puke this afternoon or the poop situation or if she is getting sick again or if I need to call and get her on antibiotics for her ear. Where is a magic eight ball?
She was at daycare when the yellow came flowing out the mouth and her teacher got her and came to see me. A different teacher was also in the room and asked why I needed to know about the puke and why it was a big deal. For most babies it would not be a deal at all if some stuff came out of their mouth however for a baby who does not eat it raises a little concern.

sleeping in her bouncer

On a different subject (but still Jilli related) I got to talk to the insurance company tonight. I went online to check to see if the claims where finished processing from having them all reprocessed from our out of pocket max not kicking in when it was suppose to. What I found (other then the old claims not being done yet from the 3rd of the month) was that for the past couple months they did not pay for Jillian's pump or pump bags. They paid for it in the past. They paid for a surgery to have a tube put in. They pay for the syringes to put meds into the tube... but not the pump to put food into her or the bags to hold the food. AHHH. So they are going to review it... it should take 7-10 business days... We will see.It has been more then 10 business days since the last review and it is still not done. Of course my phone cut out when the lady was looking into the last  review and I just could not handle going through their automated system again tonight. So I'll call them again tomorrow. I think I talk to people about medical bills more sometimes then I do with people that have deep relationships with.

weekend fun and surgery follow-up

Friday night was kinda a chill night at home. We just hung out together. Saturday morning we got up and Brent got an email for a sale on jeans at Old Navy and I was in need of some. We quick got ready and headed to the store. After we came home and went over to our neighbor's party. Saturday/Sunday morning night Brent picked Dan up once he got back from his mission trip in Honduras. Sunday we went to Church and got to celebrate my cousin getting baptized. We then grabbed lunch quick, met with our awesome insurance guy and went to Carters. My mom and I ran to Target and Brent got corn. We had a yummy corn dinner (ok there was other foods too). We then headed home.
Friday Jillian almost flipped herself out of her rock-n-play so we decided it was time to move her out of it. Saturday morning we stopped at Bed, Bath and Beyond and bought an adult wedge pillow to put under her bed. Monday a bought a crib wedge to put at the foot of the bed because she was slidding down so much. It is helping but has not fixed the problem. Still thinking on that one...

Monday morning we went to the daycare to teach her teachers how to use her new pump. We figured out that when you turn off an Infinity pump and turn it back on it does not restart the feed. Once I figured this out and fixed it, the pump does not error at me in the middle of the night. The little quarks.

Yup, I eat giraffe

Monday afternoon we had a visit with the surgeon who placed her tube. She weighed 20lb 3oz with clothes and wet diaper. The med student then came in and looked at her site. The said out way of securing the tube was creative but works well. The surgeon then came in. He looked at it and said it was beautiful and that he was turning her tube care back over to GI. He said that she could switch over to a button style tube (less bulky) in two weeks. I was excited ny that because it is sooner then i thought it would happen! He said we did not need to see him again unless we decided to do the fundo someday. 

I did notice a poster in the room that advertised that they switched over to AMT buttons. AMT just came out with a cool new GJ button and from what I have read people are really liking it. Maybe they will have it and Jillian can try it out. 

Saturday afternoon I got a super sweet letter in the mail. It has been a while since I have gotten hand written mail land it was kinda fun! And it was so kind. It made my heart smile. 

Jillian is glad to have her uncle Dan home. She likes to smile at him. 

Monday night we had dinner with our gang:) It makes Jillian so happy to be around so many people that love her. While we are I let her play with a baby spoon. Even though she does not eat, I still want her to experience what it is.

For SPOON!

Sunday we I was blessed by talking to someone at church who has been so encouraging to me. I have been able to bouncy things off of her about feeding therapy and she is such a blessing to us. God uses twist and turn circumstances to bless His name and help us. Sometimes it is just crazy how it all works together. 

Well Jillian is sleeping and I need to also. School is starting soon so this is my busy time. Brent has a crazy project at work and is working a lot of hours.

Chilling in the stroller in Lake Geneva

Croup Update

Jillian taking a neb and watching Daniel Tiger

I took Jillian to the dr this afternoon for her followup for croup. First he looked at the report from the walk-in clinic. He said the radiologist's report from the chest x-ray was that the lungs looked the broniolitus or the start of pneumonia but that the neck x-ray looked clear. (the dr there said she noticed narrowing of the throat on the x-ray even though the radiologist did not). He listened to her lungs and said that they sounded good and that we could stop neb treatments. He looked in her ears and had to dig wax out (go figure) and that the one ear looked infected. We decided to just watch it to see if it gets worse. He looked in her mouth and said it does not look like she is currently popping any teeth. He said that if her ear seamed worse to call and that he was the one on call this weekend.
The appointment went relatively smooth. He and I don't always see eye to eye on things, but he is the only ped in the office that works on Fridays and since Jillian has a track record of needing to be seen on Fridays we end up seeing him every so often.
After the appointment we went to Target. I looked at Jillian's passy this morning and there was black gunk in-between the handle and the plastic part. It was quite gross and I'm not sure where it came from so I sanitized it and it was still there. The passy part also filled up with water while cleaning it so I think there was a hole in it somewhere so it found it's new home... the trash can! I then searched the house for the spare passy and I did not find it anywhere. Searched high and low. I'm not sure where it went... I had a substitute passy that neither of us really likes but it worked as a place holder. It was probably time for the next size passy anyhow.  

sporting her feeding pump backpack

Jillian's new pump has not learned that I'm boss yet. I'm not sure if we have not figured it out right yet or what. It has woken me up every night since we switched to it with some kind of error that is magically "fixed" by me just hitting run twice. It is not even at the same time of night. It also likes to say that a feeding is done after 3.5 hours when the pump is set for 52ml/hr and a volume of 208ml. That would mean 4 hours of food is in there. On top of it sometimes there is food left in the bag (sometimes as much as 50ml) and other times the bag is empty. We have not changed our measuring methods since switching to the new pump so we know it is the correct amount of food in the bag. I am giving it this weekend to figure it's self out or I'm calling med supply on Monday. I love how little the pump is. Jillian can wear the backpack and she looks so proud. It can be tipped to so when Jillian manages to get her hands on the pump bag it is not as big of a deal. But this accuracy thing is making me second guess it. We will see.
I am also trying to see if we can get Jillian to not poop an explosion every time she poops. If she gets less then 2ml of lactulose a day she does not poop, however with 2ml it is coming out like its a volcano and up her back and on her clothes. I am trying for the weekend doing 1.5ml twice a day to see if that evens things out. We will see. It is the Jilli balance!
Jillian is also working hard to figure out how to crawl. She can scoot on her butt reaching for toys. This does not get her anywhere quickly but she does move. Watch out world! It think it is only a matter of time before she figures out how to take off. I think I will be spending some time on Saturday baby proofing the house and when I am in Milwaukee next week for one of her appointments I think I will be stopping at the mega Babies R Us to pick up a few baby gates. The house will now look more like she owns the place :)

seams she likes her new passy enough to fall asleep on a monkey!

Children's Walk/run 2013

I have started a team for the Run/Walk for Children's Hospital of Wisconsin. They have helped Jillian in so many ways over the past 7 months of her life and we are so grateful for all that they do! There are two ways for can help us in helping them:

1. Join our team! We are doing the walk portion and most people can easily walk 3 or 5 miles. As a team we are working to raise $1,000 total! If we get 10 people to join our team it is only $100 each person has to try to raise. It is $25 a person to join our team. The walk is on September 14th at 10:15 in Milwaukee. Please let me know if you would like to join us in walking to support this awesome cause. Remember kids can walk too! You must sign up by August 28th. 

2. Support! We are trying to raise at least $1,000. That is 100 people giving $10 each! Please visit my page for the walk at http://www.alsrun.com/  and search for  “Team Jilli” when you make your donation.

Thank You,

Team Jilli

Pictures of Jillian at Children's Hospital of Wisconsin

blood at site, more puke, mood changer, new pump and croup

Blood at site:

neb on the left, feeding pump on the right

Monday night Jaime and Jason came over for our weekly dinner. After the boys finished watching Men's Fraternity and us girl had chatted (Jilli played with her shadows on the wall and played with bubble wrap) we got back together and had yummy strawberry shortcake! We utilized the extra hands to help with changing her pad and cleaning her tube site. When Brent was wiping around her site some blood came out. Just a little. We are going to watch it...

Mood Changer:
Monday night I fed Jillian her bottle late. She was having such a good time playing I did not want to disrupt that. Around 8:30 I figured it was time... I gave her the bottle, which she played with, so I took it away after 10ml because she was getting so much air in and I had restarted the feed multiple times. Within a few minutes she started getting all wiggly and arching her back and no longer smiley. It was a 180 flip. Jaime was commenting how crazy different she was within a few minutes of eating! Eating just a little bit makes her so uncomfortable and it is hard to hold her because she throws herself all over! Oh baby girl.

Yellow puke... I know it looks like pee

More puke:
Monday we got to experience more puke. Yellow highlighter puke.

New Pump:
Jillian got her new pump Friday but we were instructed to not use it until the nurse from med supply came to teach me how to use it. Monday I read the instruction manual and figured a few things out. I also read a few blogs/websites about the pump. It is a little different then her other pump, but not too much. It is so light compared to her old one. So far I am liking it!

Croup:

At the Walk in Clinic

Since Friday night Jillian has had a cough. Sunday she started puking yellow. Yesterday she slept most of the day. I decided to take her to the walk in today just to make sure it was all ok. I figured it was just allergies and I did not want to over react. It it the mom balance.
We got to the walk in around 11am. We waited in the waiting room for a while and Jillian made a little girl smile. We were called back to triage and they weighed her (20lb) and measured her (50th percentile) and then we tried to get her pulse ox. It took 10min to get it to read over 95... We got it up to 97... but most of the time it was hanging out in the low 90s.
We then went into an exam room. The PA came in Jilli was sleeping. She did most of her exam without Jillian flinching. That is so not my 15min napper! I showed the PA the picture of her puke on my phone and video that I took of her cough during the night. Jilli kept falling back to sleep. The PA also looked at Jillian's tube site and said that it looked good, we had it secured well and there did not look to be any infection! Yeah!
She then sent her for a chest x-ray. They had a hard time getting the right angle. We then went back to the room. After a while the PA came back and said that Jillian has croup and we needed to start her on a nebulizer and steroids. She said they were working on finding a neb for her since my neb only has the adult part and not the kid mask. They left to find one.

Getting a nebulizer treatment

Carley the dietitian called while we were waiting and said she got my message last week and had lost my note and just found it on her desk. I have so done this! She asked how Jilli was and I told her we were in the walk-in with croup. She said that she was not going to change anything while she is sick and will see us next week.
The nurse then came in with a nebulizer and a packet about the visiting nurses. I said that the VNA had been at our house that morning. She looked at Jilli (hooked up to her backpack) and laughed and said she was sure they were. lol!
We then headed to the Walmar
t Pharmacy to pick up her neb meds and steroids. It took forever to get the meds (over an hr and a half) but our favorite pharmacist was there and we talked quick about each of our tubies.
We headed home and I put on a Disney Sing Along Songs movie and tried doing Jilli's neb in her chair but she was at an odd angle for it so I held her. It was a scream fest. We cuddled and she slept.
My cousins Jake and Dustin came over for dinner and Brent and Jake build Jake's new computer. Jillian liked the boys. I taught Brent how to hook up her new pump, he gave her a neb and then the boys left.

cuddling with mommy

We have done one more neb since. It is breaking up junk in my lungs too. Sometimes I forget that my lungs suck until I do something that make them work better. I just live in a state of them not working as good as they should, and I bet most people would seek medical treatment if they felt them all the time, but to me it is normal. I guess we each have our own normal :)
I was going to call and get her the next shot she needs but not while she is sick. She is ending up really behind with this one... Osp! She has to not be recovering from something though for her to get it.
Jillian and I will be hanging out at home for the next few days so she can get nebs and rest. She has a follow up with one of the pediatricians on Friday afternoon.  

I would like to do a shout out to the amazing people at the walk in at the Lake Geneva Aurora Clinic. I have had a lot of issues in the other departments of that clinic however the walk-in is great. The walk-in in Kenosha will not touch Jillian because of the tube. Many tubie parents struggle to find care for their tubie other then at a Children's hospital, even if it is for something that has nothing to do with her  tube. Thank you for the awesome care we got yesterday and to be willing to see my tubie. It means a lot to this mom!

In jumper reading a book

Coughing, yellow puke, insults, back arching, stablizing, bath, and new pump

Finally gave in while mommy ate

The past few days have had a lot of little things going on...

Coughing:
Jillian started coughing on Friday. Her allergies are bothering her and her nose is running. Friday night into Saturday was long because she had a NASTY cough again. It is one of those coughs that wake you up and scare the crap out of you! Luckily by the next day her cough did not sound as bad although every time she coughed she would cry. Poor little one. Allergies just sneak up on her and kick her butt!

Yellow puke:
Sunday morning Jillian was sitting on my parent's white carpet all dressed for church. Brent was about to hop in the shower and I was getting ready. All of the sudden yellow liquid cam spewing out of her mouth. A LOT of it! I felt like we were back in the days of her eating bottles. It just kept coming and coming and we were grabbing everything we could to catch it since we are not as prepared for eruptions any more. I had time to go into the kitchen, get a bunch of paper towel, walk back to the living room and still was catching more that was coming out. It was a mess! A 80's neon yellow mess!

Puke on her clothes... it was on the white carpet too

 I called GI because we have never had puke like this before. They called and said they think it is because she has a runny nose and that we can give her a neb treatment if we want. She has had 1 neb treatment before in the ER back in March but if I am going to do a neb treatment at home I would like more info then to just do one over the phone. I know how to do neb, I own my own nebulizer, but she is a baby. I also don't keep the standard neb meds in the house because I take something that is a higher dose and more pure. We will see how it goes.

Insults:
I have heard little comments before from people that were not kind about Jillian. Most of them have been from strangers that don't know better so we take time to educate them. I find that most people are so kind about Jillian's tube and we have only had a few awkward situations while out with Jillian and most of them have just been people staring at her for a really long time. This weekend we were at a family function and someone who is closely related family said some of the most hurtful words I have ever been told. They crushed my heart to a new level. A few people in the family suggest every time we see them that Jillian would be "better" if we just let her eat... AHHHH. Sometimes I wonder how many times I have to explain this. Saturday the comments where taken to a new level! Someone had the audacity to infom me that they don't think I have tried hard enough to get her to eat... WHAT? Oh hun, you are sadly mistaken. The party was in a park so I excused myself to take Jillian on a walk. We came back about 20min later and then was told that she probably does not eat because she does not like what we give her and if we just gave her donuts she would eat... WHAT! Man, this was crazy! We then left. I do not need to be attacked like that! I have heard other mom's complain about people's awful comments but I never thought I would hear them. I have always known that part of our family thinks I'm crap, but it is a different thing for them to actually say it outloud! I am trying to figure out what we are going to do about this. We have educated til we are blue in the face. We have told them what is going on with Jillian. What do we do now? How much is enough even though they are family?
With all of that crap on Saturday afternoon, Sunday God brought me just the people that I needed to see! He is amazing that way! I have always had a a few extra sets of parents and I was surprised at Church on Sunday that they were there! Sometimes just the comfort of being with someone is enough! We hung out with them and had a lovely lunch with them and some other people from Church. It was amazing! Their son is who I learned about tube feeding from. I use to baby sit him when he was little and did tube feeding and feeding therapy. Knowing this family has made all of this easier and not as scary! It ended the weekend with a smile!

Back Arching:

back arching from reflux

Saturday night I forgot to give Jillian her acid reflux meds by mouth so they needed to go into her g port. I gave her 1.3ml of meds and a 5ml flush of water. This caused back arching and tossing for over 30min. I am going to have to talk to GI about this next week. She seams to have a lot of pain anytime we put things into the g port.
On Sunday afternoon Jillian started screaming. Not crying, screaming at the top of her lungs for an hour. I vented her g port and that seamed to help. I am not sure what the problem was.

Stabilizing:
We have been using two ace wraps to hold Jillians tube so it does not move. Saturday night we went and walked around Gurnee Mills and then got dinner. At dinner she was very fussy. We noticed that the rolled ace wrap was missing. We ended up using her ear thermometer that we keep in the diaper bag as a stabilizer with the other ace bandage wrapped around that. Who said we can't be creative!?

securing PEG tube with thermometer

 Bath:
Jillian has stated to love bath time! Yeah!

New Pump:
On Wednesday night I on my way home from work I called med supply to order more supplies and to see if we could get an Infinity pump. We currently have a Kangaroo Joey and I love how user friendly it is however it is not able to tip and is bulky in comparison to the Infinity. They said that they stock the pump and that we could switch. They delivered the pump on Friday and a nurse is coming out to teach us how to use the pump tomorrow morning. I am actually a little sad to be giving back our Joey but I think this will be the best move for Jillian moving around. They also sent us a new backpack for the Infinity that is super small and will fit Jillian really well (it is too small to fit me)

Snuggle time with daddy and George

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!!!

The Church

I am very fortunate to have grown up in the same church all my life. In fact my great grandparents went there too. It's a generational place for us. I am also very fortunate that it does not operate the same way it did generations ago. As the years have gone by the church has grown and changed. Some of the changes I love because it has made "the church" become more connected with the next generation but I can't say I don't miss some of the old traditions. 

This morning I was reminded of the connection of the people in our church. I am blessed to know so many people that love and care about us. Today we were not running in the door late or having to run out someplace after. We had time to visit. It still blows me away with the amount of people that pray for Jillian. I don't think I will ever fully know how many people pray for her and us. 

I was really encouraged today by our church family. They asked knowledge gaining non judgmental questions. I am so blessed. They encouraged me and lifted me up! 

Thank you church family!

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!