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.

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

"Wow, you all have had a holiday week..."

Lets back up a little bit here. We are going to take this week day by day:
Monday: Monday was full of screaming and puking. I called GI in the morning like the walk-in clinic said. They informed me that the dr was not in and they wanted me to call the ped office. The ped was able to get us in after lunch. She looked Jillian over up and down. She said her ears looked great and that her lungs were good. She said her belly felt soft. I played her a clip of what her cough sounded like. She said that was croup. She told us to use some Vicks vapor rub and to do nebs as needed to help her. We talked about the constipation and she told me to call GI and see if we could add free water to her tube because extra fluid can help with constipation. (free water= plain water pushed through the tube for the purpose of hydration). We left the dr office and headed home. Jilli still screamed off and on. In the afternoon the Dietition called. She said she got Jillian's weight from Monday and she still gained more weight then wanted so we are dropping her down to 17hr a day and giving her 2-3oz of free water spread throughout the day by flushing her tube with 15ml of water each time we fill her except at 2am.

 In the evening Jaime and Jason came over even though Jaime is having a lot of back problems right now. For the most part Jillian still just wanted to cuddle.

Tuesday: Tuesday morning started with her trying to puke on me but we made it to work. She was still crabby in the morning. She had a small poop on our way to school and then just a skid mark after that. You could tell she wanted to poop. GI called me to check on her. The GI dr had not been able to talk directly with the nurse but they had messaged back and forth. The dr wanted to wait this out longer because she said it might be a virus. Tuesday night I was packing for us to head to my parents for the holiday weekend. Jillian was in her jumper playing with a board book. I walked into a different room to get something and came back and she had bitten a chunk off the book and was choking. I swiped as much out of her mouth as I could and called for Dan to come help because Brent had run to the store. He grabbed a flash light and was able to see the piece that was still in there. He finger swiped her and got the rest out. Once that was finished Brent got home with the suppository for Jillian. We laid her down on a towel on the hard wood floor and I held her hands, Dan held her legs and Brent put it in. During the next hour we got three small poops...

Wednesday: We went to work. She was less crabby and had a couple small poops. After work we stopped at Target and I got my new pots and pans set since ours was getting yucky and they were on a very good sale. We then headed to dinner with Brent's parents and brother to celebrate Thanksgiving and Brandon's birthday.  It was a nice meal and Jillian loved looking at all of the other babies in the restaurant. After dinner we headed to my parents. Our family makes stuffing the night before since we use a meat grinder to put it all together and it takes some time. My grandparents came over and helped. Dad, Brent, and Grammy made stuffing and I helped grandpa do some Christmas shopping.
Thursday: Happy Thanksgiving! In the morning we traced Jillian's hand onto her feeding bag filled with formula and decorated it like a turkey. We shared the photo with our friends over at feeding tube awareness and the photo ended up being spread to multiple other websites. Everyone kept commenting on how cute she was! My mom's side of the family came over for dinner. She loved sitting in her highchair at the table where she could see everyone. After dinner the cousins all played Apples to Apples Disney and Jillian cuddled up with my uncle Paul. After everyone left Brent and I got all of Jillian's things together for the night and my mom, Brent and myself are one of those crazy ones who love to go out Black Friday shopping. We get a lot of great deals but more importantly we have a lot of fun together doing it. With us out shopping that meant my dad and brother would be watching Jillian. They both spend a lot of time with her and know how to do her feeding pump and what goes where. We left Jillian in their capable hands around 9:15 and we headed out. First we stopped at Target, the JC Penny, next was Kohls.

Friday: We stopped at McDonald's around midnight and then headed to the outlet mall. We hit up Shopko and then headed home for a nap and to unload around 2:30am. We got back up at 5am and headed out to Gordmans and the Menards. We went over to Joann Fabrics and my dad called. He said Jillian felt warm and wanted to know where the thermometer was. I let him know and her called back a few minutes later saying she had a 102.1 fever. We left the store and walked over to Big Lots in hope of getting some meds to get her fever to come down but they did not have any so we went over to the grocery store and picked some up. We got to mom and dad's and gave her med and a neb because she was breathing very quickly. After over an hour her fever dropped to 101.5 and she started to perk up a little bit. I started texting with Dan's mom to get her opinion since Jillian had never had a fever like this. By mid afternoon it was creeping up again so I called the nurse practitioner. They said to take her to the ER.

We loaded up our stuff and headed for Children's. They brought her back and started her vitals right away and she had a 103.1 temp. She did have a weight of 10kg... with a wet diaper and winter clothes on, lol! As we were being walked to a room nurses we greeting us... because they knew Jillian. We got into the room and a nurse that we have had before and we like walked in. We explained what was going on. Then a med student walk in and we gave him all of the information. We took one look in her ears and said they were very infected. He looked at her tube site and it looked fine. He listened to her lungs and said they sounded fine, however she had a neb 2hr before. We then started to put her belt and pad back on and before we could her tube site started bleeding. The med student had to grab gaze and hold pressure on it to get it to stop. He then walked out of the room. The nurse came in and gave her a med to take down the fever. We had to put a call into the pharmacy to make sure the med could go into the J port. You never know what meds need to be digested in the stomach until you ask. Brent and my mom then traded spots. The ER now has a new policy that only 2 adults can be in an ER room with a child. I am guessing this is part of their new safety plan since the shooting. The two of them switched places in the room/waiting room multiple times while we were there.

 The the attending dr came in. He looked at her ears and listened to her breath. He said her lungs sounded clear but before he left the room she decided to show him some of her fast breathing. Our nurse came in along with a care partner to get a urine sample with a catheter. She tried and tried but could not get it. She left and found another nurse and she tried. They dug and eventually got it. They said that the skin was almost fused together down there making it really difficult. They said that the dr could give us some cream to separate it. A while later the care partner came in and took her temp again and it was 100.8. The dr came in a while later and said we could go home. I double checked with him to make sure the site bleeding was ok and her said yes. I brought up the problem with getting the catheter in and he kinda acted like the nurses did not know what they were talking about. He said we could talk to our dr about it.

The nurse came in with the discharge papers. Once we signed everything she said Jillian hold an award in her book for the most clogged tube. She was our nurse several months ago when her NJ tube clogged on a Sunday morning. We tried and she tried to get it unclogged. The dr walked in there like we were all dumb and tried himself and it splashed all over him. She told us that dr had really needed to be taken down a peg or two that day and Jillian did and and for that she was the talk of the ER. We left Children's and stopped at the pharmacy to pick up her meds.

Saturday: In the morning she was cuddly but by mid day she had perked up and was playing. We thought we had turned the corner. We took her with us to Shopko to pick something up and then we had to stop by my grandparents quick. While we were there she needed anouther neb. Once she was done giving herself a neb she decided that Pooh needed one too. It was cute. We stopped and picked up pizza on the way home and ate as a family. Then we put on Christmas music and decorated the tree. She hung out on the floor watching us. My daddy helped Jillian and I put the star on top. It was overall a lazy day. We did get one really good poop in the morning and she gave grandpa a small poop while she took a bath... just enough to get the water yucky!
Sunday. By the morning she was not breathing well again and her fever was creeping up over 101 with meds again. We decided to keep her home from Church. She and I hung out mom and dad's and she slept. She was awake fore only about a half  hour before noon and during that half hour she pooped whenever! I knew she was really not feeling well though because I left her sitting in the living room while I found her clothes and she did not get into anything. After everyone came home from Church we had leftover thanksgiving food and then packed up and came home. My parents came with us and the boys put new insulation over our living room and kitchen. Mom and I cleaned somethings up and put up my Christmas Village. This year I only am putting up a small portion of it, however it is the first year it is going up in our house. Jillian gave us another good poop while mom and dad where here. In the evening Brent headed to Walmart and Dan and I were hanging out with Jillian. She was more or less sitting next to her toys but not doing much. I stood her up behind her walking toy and for the first time ever she pushed it and walked behind it. She is getting so big! In less then 2 weeks she turns 1!

Monday: We were up a lot during the night with her coughing. We gave her a neb in the middle of the night and again at 7:30. Around 8:30 I brought her downstairs by me because she was coughing so much upstairs. She went back to sleep in her chair. Around 9 I took her temp and called the dr office to make sure they wanted us to keep doing what we are doing. They said yes and that it could take until Wednesday for this fever to break. She woke up a little before 9 and I gave her meds and got her dressed. Then she fell back to sleep. It is almost 11am and she is still sleeping. She is very noise too! We will see how to rest of the day goes. Her temp is around 100 degrees on meds.

We are going to have to tag team it this week to keep her home to get healthy. We are short staffed at work right now and I hate leaving them stranded. I feel so bad when I have to call it in and with Jillian I have to call in a lot. Before Jillian I never called into work even if I did not feel great because I hate making everyone else have to work extra to cover for me but Jillian has made me have to put my pride to the side and do what is best for her, and sometimes that really inconvenience others. Until Jillian is fever free without meds she cant be at school so Brent and I will make this work this week, just like many parents have to.

Thank you for all of the prayers on getting Jillian's feeding pump covered. We received a call last week that her pump and bags will be covered 100%! This is huge and takes a large finical concern off of our minds.  We are still working to get coverage of the special formula that has to go into her pump. It costs about $15 a day for the special formula. We are asking for prayers that this gets covered soon.

Its a GI problem

Today Jillian and I went up to Children's clinic on Moorland road to visit a feeding therapist for an evaluation. She had not had a feeding evaluation since she was inpatient in April so it was time to look at it again.

When we first went in we went over the Jilli health history. She looked exhausted just hearing it :) Then we talked about what Jillian does for taking food by mouth (1 bottle once a day of 15ml breast milk). She said she wanted to see how Jillian did with a spoon and with breast milk on a spoon.
Before we started with the spoon the therapist first tried with putting her fingers in Jillian's mouth. She was receptive to it. She felt around her mouth a few times and tried a few different things. She said that her oral motor skills looked good for never having finger food in her mouth. The only thing she did not do was move her tongue to the side of her moth that the finger was on, instead she always left it in the middle of her mouth. She said that was not a big deal though because currently Jillian had never needed to use that skill so her not doing it was not surprising.She said this showed Jillian was not ready for any finger foods like puffs.
 I had brought with one of the spoons that we have at home that she plays with while we eat dinner. The therapist put 5ml of milk in a cup that she spooned out to give to Jilli. At first she did an amazing job of eating the milk off of the spoon. She would put her top lip down and take it like she had always been eating that way. The therapist was really impressed.
Then She mixed a little bit of rice cereal with 10ml of milk. Jillian took this off of the spoon nicely too. She became less coordinated with it as she went on but for her first time spoon eating she did great. The therapist said she was really impressed and was not expecting that at all. Also as eating went on she went farther and farther between bites and would put her passy in between bites, which is Jillian's signal that it hurt, but she kept on trying her best. After she finished eating we let her sit in the high chair and we worked on updating things about her eating into the computer. This is when Jillian started to have a hard time. She started to reflux about 3 minutes after she finished eating. She was sucking that passy 100 sucks a minute, her arms and legs became stiff, she was bright red and she would intermittently yell out. It would be bad for a few minutes at a time and then she would calm again. She was trying to rip off her bib so we took it off for her and let her hold it. She wrestled with the bib like it had just tried to steal something from her. You could her hear refluxing, gulping, and her vocal cords sounded horse. Her breathing became more labored and varied from fast to slow. 
After about 20 minutes we decided it was time to show off her bottle skills. She spit out her passy like she is suppose to when I brought the bottle to her. She would not hold it but did a great job drinking it, in about 45seconds, which is a normal time for 15ml of milk. After the bottle was over I sat her up. After about a minute she started to reflux. It was like trying to hold an unhappy monkey. She was all over the place and very hard to hold because she was trying to get comfortable. She was sucking on her passy a lot, making swallowing sounds, and throwing her head back. From they was she looked at times you would have thought the ceiling was very interesting.
The therapist and I then talked. She said it pains her to see how much pain Jillian is in when she eats. That she has great oral motor skills and defiantly does not have an oral aversion. She then said she was unsure of the next steps. That a part of her almost said to not have Jillian eat by mouth anymore because she was worried that one of these days an oral aversion would form. That was the eating by mouth worth it? That because she has such great foundational skills that if she was able to eat later on without pain that it would be a lot easier to regain these skills since she already has them, then to fix an aversion problem. We decided that since for right now she is still willingly taking the food that we would keep going with it. We decided that we would try spoon feeding her 5ml of plain milk and then 10ml of the milk mixed with rice cereal for the next week to see if it made any difference. It did not in clinic today (it was almost a worse reaction) but that we would try it. She suggested staying with the 15ml because that is what has worked and we don't want to up the volume and change the form at the same time because then how will we know what went wrong if something goes wrong.
We also decided that staying with the stage 1 bottle nipples were best because she is sucking them perfectly and we don't want to mess with something that is working. She said that for now it is best to stay with just the milk and not add other things (except the rice), especially if we might be taking food away if she starts to struggle with the pain more and because we dont know of any possible allergies and we don't want to add problems. She said that Jillian is not a kid that we would be working on taking the passy away from anytime soon because it is a coping method and is helping her in dealing with the pain and in keeping oral motor skills.
She said that we did not need to come and see her again anytime soon but she is a resource for us and is here to help us in any way. She said to let her know how the next week with the rice goes. She said she would put a call into the GI about the visit.

Overall today would be a middle of the road reflux day. By no means was it her worse, but it showed them what a little taste of Jillian's tummy troubles where like. 

After we finished Jillian and I went across the street to Target to buy rice cereal. While we were there she was not her normal talkative smiley self. She just sat there, dazed.
Once we got home I changed her diaper. She had pooped out of it. She is not pooping out a lot right now but it is coming out with some force behind it causing most of it to be out of the diaper instead of in. While I was cleaning her up I noticed the inside of her g tube looked nasty (its clear) and I had just flushed it with clean water this morning. I hooked up a syringe and vented out 8ml of tummy contents. There looked to be some grains of rice cereal still in there from 11:30 and it was now 2pm. Yummy! I then flushed her with 3ml of clean water. She has been kind off all afternoon. She has been throwing herself around and not wanting to play. She has been having episodes of reflux too.
Also while I was changing her I noticed that her rash is coming back. It is looking better again this afternoon. I'm not sure what these little bumps are. Maybe just another mystery of Jillian. Hmmm....

Hospital stay #5

Wednesday started early like any morning at the hospital. As the nurse said the "scouts" (med students) where in early (6:30). Around 7 was rounds. The nurse had told me the night before that round where different on this floor. They are a lot quicker and about the facts not about digging in deep. Rounds lasted about 5 minutes (can last up to a half hour on other floors).
The nurse came in and said that we would be be able to do the EEG in the room YEAH! A tech came in around 9:45 to do the test. By this time Jillian was sleepy because we made her stay awake after rounds in case they said we could do the EEG. We kinda broke the rules for this because Jillian should have been woken up at 5 but because we did not know if it was happening or not at that time we did not want to bug her. She was barely awake by the time he came in anyhow and that is what they wanted. She was not a big fan on getting all the wires attached to her head but she did not scream. The tech finished attaching them and then he left the room for the test to take place. We left Jillian in her crib for the test and she fell asleep very quickly. Brent worked on work and I blogged. The tech came back in after 35min and said he needed to wake her up to see how her brain acts waking up. She woke up calmly and started talking. He took all the stuff off her head and left.
We hung out and I went down and got Brent and I lunch from the cafeteria. Around 1 her nurse came in and said we should give her a sponge bath before surgery. She started bathing her and the head nurse came in and said surgery had just called and said they were sending someone up to get Jillian. It was almost 2 hours before we were expecting to go down. We got her bath finished up and by that point someone from surgery was there.

With EEG probes on

We walked down to 3rd floor general surgery and were put in the same holding room as the week before. Doctors and nurses came in to talk with us. This time they did not use Versed to make her loopy first. Around 2:30 they came in and got her. It was hard to not cry. Someone came over and got Brent and I and walked us to the waiting room. After about 40 min the surgeon came out and told us his part went great and that radiology was in at that time converting it to a GJ. The second part of waiting felt like forever. Around 4:30 they came in and said one person could go back. I went back and Jillian was sleeping. They said that she had fussed a little but that she went right back to sleep. It was nothing like her coming out of the first surgery. After a few minutes they said it was time for her to go back to her room.
We went back up. She slept the whole way. We got up to her room and they checked her out again. She was so out!  Someone from x-ray came up to do an x-ray to make sure the tube was in the right place. He said he needed to do a chest x-ray. I knew they were looking for farther down but... He put the x-ray thing under the mattress, this is when the momma bear claws almost came out. He was not gentle AT ALL!  She was just out of surgery and he was messing with my baby. She gave him a stink eye and went back to sleep. He went and asked the staff if the pic was what they wanted and low and behold nope they wanted one that showed lower... where the tube was. He redid it and left.
My mom and I went and picked up dinner for us and when we got back Dan was there too so the 4 of us had dinner while Jillian slept. She wanted pain meds around 10:30 and then we went to bed. They kept doing diaper changes during the night to make sure that she was hydrated and they made her upset. She is not use to diaper changes during the night and bending to get the diaper under I am sure hurt! Around 3am she needed more pain meds.

In Surgery holding

Around 6:45am people started coming in and asking how the night did. At rounds we were visited by the on call surgeon. He said she looked great and he might send us home that night. Around 8 we got milk started again at 15ml per hour. Around noon we bumped it up to 30ml per hour and caped her IV. She was taking it great and only wanting pain meds every 4-4.5 hours. We tried to pick her up around noon but it hurt her too much to be held. She finally let me hold her around 3.
In the afternoon we were visited her GI dr. She looked at her and said she was doing great and that she was happy. At the same time the discharge person came. She was in charge of making sure we got the correct supplies from the home delivery company. A little while later someone from nutrition came in. She told us we would be bumping Jillian up to 48ml per hour now. We said on plain breast milk right.... no, it seams that the nurse we talked to last week had not documented that change. No one was sure where that came from and she said we needed to go back to fortifying to 24 cal.
Around 3:30 they came in and said they would be discharging her soon and gave us her script for oxy to be filled at the pharmacy. Brent went down and got it filled. Around 4:45 the nurse came in with the discharge papers. We signed and packed up our stuff. We got out to the car around 5:30. We got in the car and headed home.
When we got home Brent's parents and brother were waiting for us. Dan was making us dinner. We gave her meds around 10:00 and went to bed. She slept until I got up at 7:30 to pump. I pumped and she played. I went downstairs to put the milk away and came back up and she was asleep again. She slept until around 10 when I went and woke her up because her milk back had run out. I realized that she was still in her diaper from the night before. They might say 12 hour however they dont really last that long. There was pee EVERYWHERE! I picked her up and ended up with a wet shirt. I got her cleaned up and got all the wet laundry in.
Jillian and I hung out during the day and got some things done around the house. In the afternoon I went to change Jillian's diaper and looked at her incision. I noticed that how her tube was laying was pulling on the incision. In the hospital they did not show us how to tape her tube so that it did not pull, I only knew that the way it was pulling was a bad thing because of all the reading I had done before her surgery. I then figured out that her tube was going to have to stick out more and then come back down. I struggled how to make this work. Dan got home and noticed me sitting on the floor getting upset and had me call his mom for help. We talked it through and I made it work. That night I posted to Feeding Tube Awareness asking if anyone had a better idea of taping. I am still working on getting it just right but I think it is better then it was at first.
We packed up once Brent got home and Dan and I took Brent's car into Kenosha and a while later Brent left the house in the van with all of his DJ gear. When we got to mom and dad's my dad's side of the family was there eating tacos. My grandma makes these amazing home made taco shells out of corn meal! Food gathers the family! We got to catch up with people and even had Napolian for dessert! We headed to bed late. Jillian only took 3 doses all day of oxy for pain. She is so strong!
Since she has gotten home she has randomly been puking drool. It is coming up with a lot of force. I'm not sure what is up with that. I'm watching it to see what is up and if I need to call GI. 
Friday med supply also came. They brought a TON of cut 2x2 pads (we have pads from KangaRoo-tique so we don't need these), a large box of cotton swabs and 3 extension tubes for us to try and the last 5 bags we are allotted for the month. Other then the 5 bags, I'm not seeing the need for many of these things...
I want to thank some amazing people for there help last week. First, my mom for all of her help! She came the first night and brought me dinner and helped give Jillian a bath. She brought me dinner each night in the hospital! Thank you to Dan for searching the house for bear even though it was in the car :) It is a true friend to turn a house over for a little girl's bear. Thank you to all of the people for the phone calls and texts and facebook messages of support. They mean a lot!

I'll update about our weekend later. Right now I have a little girl who has only taken a few little naps today so she it sleepy and a house that NEEDS work because in the last two weeks we have only been home a couple of days so it has been the dump and run. Goal of the week: find this house again while Jillian heals!

green light means go!

Happy Dance… ok weird happy dance! I know most people would not do a happy dance when the word surgery was mention but we are and let me explain:

Jillian had an appointment with her GI doctor at Children’s today. She is up to 17lb 9oz! She gained about 18 grams a day and the goal is 15 so she is exceeding the goal! They gave us guidelines of how to adjust tube feedings when she takes milk by mouth. If she takes in 30ml in a day we can cut out 1 hour of tube time.

By mouth, we are going back to her only giving her 15ml at a time. This will hopefully drop down the puking and screaming. She can have two 15ml bottles a day. They still want us to do one of those bottles 3 hours after the pump is turned off. The point of bottle feeding currently is to keep up sucking coordination and not for nutrition. The doctor had thought about upping mouth feeds until I explained how the last two weeks have gone and then she decided we needed to back off. We are very relieved by this because the last two weeks have been really hard at times. 

We then talked about the plan going forward. Jillian has had a tube in her nose since March. There are challenges with the tube in the nose. One of them Jillian has dealt with and that is increased sinus issues. The nose and sinuses are not meant to have a tube in them, and especially not for very long. Jillian has mastered pulling all of the tape off of her face and has patches of skin that come open from the amount of tape we have to use.

The tube has been a life saver for Jillian and we are so grateful. We are currently no closer to her being without the tube then the day she went on it. With that in mind and the challenges that the NJ tube has as a medical team we have decided that it would be best for Jillian to have surgery to have a GJ tube placed. The tube will now go directly into her stomach instead of in her nose. (Here is a link to info about the surgery: http://www.feedingtubeawareness.com/surgery-docs-hospitalizations.html )

Someone will be calling me within the next week to schedule the surgery. The surgery will be done with her GJ doctor and a pediatric surgeon. When they do the surgery they will also be doing an endoscopy at the same time to look at her esophagus and take some biopsies of her throat. After the endoscopy part is over she will get the tube placed. She will have a PEG tube which has tubing that sticks out of her belly. After surgery is done she will go to interventional radiology and have the tube in her belly extended into her intestines. We will then spend the night in the hospital. There is a chance she will not be able to see the radiologist to extend the tube until the morning after the surgery depending on scheduling. If all goes as planned we should be in the hospital less than 24 hours.

The clinic today gave me a nice binder with all sorts of info about the tube. It is filled with so much information! The nurse said that I was lucky because Jillian has had the tube for so long now that getting this new tube won’t be too different.  Many people have told us that having the tube in the tummy is much easier.

Birth to 3 was going to come out today to do their initial eval but we had to cancel with them to go to the appointment. I have called them a few times and left voice mails to see when they want to reschedule but I have not heard anything back yet.

Yesterday Jillian got another shot. She did not care that a nurse stuck a needle in her leg, she just kept planning with her doll. I’m glad she does not scream with shots but I wonder a little why she does not even seem to notice them… 

After her doctor’s appointment, we went to Starbucks and the mall. Jillian and I rewarded ourselves for a successful doctor’s appointments with new clothes. We both had giftcards to spend from Christmas. I got myself some smaller clothes and got her some bigger clothes lol! Thank you to the people who provided us with the gift cards. It was so nice J

Today Jillian and I are cuddling. She seams extra sleepy today, which I am guessing is a side effect of the shot. She also has a runny nose a cough, which she also gets after having a shot. Tomorrow we are hoping to get her 6 month photos done.  I want to get professional pictures done before her tube is moved since a tube on her face has been such a

. big part of her life so far.

Part 2

We keep chugging along with this food trial. It has been a trial for us! As I typed the first sentence of this

blog post Jillian puked on me and the only thing that she has "eaten" today so far has been her acid reflux medicine... Ironic huh?
GI called while I was at work yesterday. They left me a voice mail asking if I could call them back  about Friday's appointment. All I could think was that if they were calling to cancel I was going to cry. I called back and the dr. had something come up Friday and needed to reschedule... but has moved her office hours this week to Thursday instead. So we are going before work on Thursday. It is nice to have one less day of this trial now but Friday my mom and I were going to make a day of it and go to the zoo or something after. Birth to 3 was also suppose to come out and do their eval Thur morning so I need to call them an rescedual today.
Here are the scans of the past few days:

  It seams like either she is really upset right after eating or an hour or two later. Some of the screaming she has been doing the past few days is like when she was younger.You can clearly tell she is in pain. It is like she is a different kid once she starts refluxing. I know my child will not always be happy but it is hard to do something intentionally over and over that you know is painful for her.
On the plus side we had a fun weekend with my parents. Dan, Brent, Dan's dad and uncle came over and worked on our bathroom (THANK YOU!!!!) and Jillian and I hung out with my parents. My dad and I got a new battery in my car. My mom and I went to some rummage sales. We cleaned the tape leftover off Jillian's tube and then after we torchered her we showed her a Pooh movie for the first time. She loved just cuddling up! We spent father's day with family.

In my new Exersaucer at grandma and grandpa's

With Aunt Jaime

I'm ok with baths now as long as my feet don't touch the water...

Been at this a few days now

For the two week trail I am trying to keep really good notes to be able to bring to the doctor with us. Here are the scans of the sheets up to today. You can click on the sheets to make them larger. The way the form I am using looks has changed a little since I have found different things that needed to be add/changed while using it.

For today she drank 7ml of the water. She also has been coughing every time she wakes up. I am not sure if she is choking on something when she is waking up or what is going on. Sometimes she coughs while she is sleeping too.
There is no way I could write down each time I hear her reflux but I am writing down the big ones. 
For this trail she has been her happy normal self most of the time but she tends to be upset after she eats and is more irritable. Brent and I both feel that she is more fussy and acts like she is in more pain right now then she has for over a month. We have had more times of random screaming then we were having.

She had her 6 month Dr. visit today with her ped. She gained 2oz since Friday which is great for the diet she is on. The dr said she is looking good and that her ears look good. She put in the birth to 3 referral that Children's wanted.  I'm not sure if she will qualify but we will see.
I told her dr about the trail GI is doing and how it is going. She asked if I had called GI about how it is. I told her no because they wanted to give it 2 weeks.  She expressed that she thought life would be easier if they placed Jillian's tube into her tummy because she is going to start pulling at it more as she gets older. Please pray that GI holds this same opinion and that if it is God's will that she will be able to have the surgery sooner rather then later.
She also got one shot today. We space her shots out because if she does more then one at a time she seams to get sick 10to 11 days later. I know, weird delayed reaction but this is Jillian. The nurse gave her the shot and she did not make a sound. She was playing with her passy and could have cared less that a needle went into her leg. The nurse was impressed :)
Last night before her bath she sat up unassisted for about 30sec. She would not do it for the doctor today but she is working hard at sitting up. She wants to know whats going on. Last week the three of us went to the mall after her dr appointment and for the first time we put her in the stroller without the carseat. She thought it was great to look at everyone!
She is in LOVE with her feet right now. She loves to hold onto them, however she is not a huge fan of them touching the floor while she is laying or for them to be in water. She works really hard sometimes to keep her feet from touching things. Sometimes she does some really funny sensory things...
She also is in love with her bear blanket. My mom and I got it for her a few weeks ago and she likes to just hold it. It is a mix of some of her favorite textures and she will keep it by her for hours. It is also a lot more manageable to carry around then the blankets she was trying to carry around.
On another possessive note, her new backpack said it shipped. Now is the waiting for it to arrive. I am so excited to try it. I got home yesterday to the UPS truck pulling out of our driveway. I got all excited just to find out it was a tech manual...

Some other ramblings about our life:

• My van is having an issue starting right now. If I try to put the key in and start it right away it just sputters and will not start. If I put the key in, turn it to the second key position, leave it there for several minutes and then try to start it will turn over after a few sputters. Any ideas are welcome.
• This weekend is a boys weekend at our house. Dan is moving in soon and we are getting things ready. The bathroom on the level of the house he will be moving into has some issues. When we bought the house it was not winterized properly so some pipes had problems when we turned the water on. That bathroom had the most problems and we have not dealt with the issues yet because we have just pretended like we only have one bathroom even though we have 3 but 2 do not work. Dan's  dad, Brent, Dan, and my dad are going to work on the bathroom this weekend. 
• My borther-in law was supper sweet this weekend and came out and mowed our huge lawn!