Mom, the medical assistant

Wednesday Jillian's sickness started to really turn the corner. Thursday we were still doing nebs every 4 hours and she still sounded rattly, but today she has not had a neb yet. I feel like we have conquered this illness.  Life with Jilli, as with all kids, is a balancing act. We always dance the line of when does __________ illness/problem need medical attention. It is hard to figure out a lot of times. I was talking yesterday with someone at work and we were commenting on how many of the parents blame fevers/runny noses/coughes/ect on kids cutting teeth. It is the go to response and I would bet that over 95% of the time that we are calling parents to tell them that their kid has a fever or something else and needs to be picked up that it has nothing to do with teeth. Kids get sick. Yes, teething causes issues, but trust me it is not to blame for everything. We were joking that if I chose to blame stuff on Jillian's teeth that she would be dead because with her common things get bad fast.
I feel proud because I feel like this time we caught this at the perfect time. I know for most people their child having to miss a week of school due to illness would not be catching it at the perfect time but for Jillian that is impressively low for time spent sick. I knew it had to get to a certain level of "bad" before anyone would do anything for her,  but the trick is for it to not get so bad that it takes forever and days in the hospital to turn around. Her lungs were cloudy and headed for pneumonia but she got on good drugs before it got that far. This time we stopped the perfect storm of upper respiratory problems mixed with a stomach that cant handle drainage. There will be more in the future that we will probably not catch at just the right time, but I'm going to celebrate this one, because man, its hard to figure out the perfect time to take her in. 

In other news...
Today I got to help change Jillian's j tube. It is a good thing we had it scheduled for today because the end/cap for her g pot has been hanging by a thread and sometime during the night it came off so I had to use tape to keep the world from being covered in her tummy juices.

That should be attached to the g tube port

We got there and in the process of getting to IR I think they could have paid me for showing people around. I must have really looked like I knew what I was doing because every time I turned around someone was asking me for directions. Luckily I have been to many places in the hospital and knew which way to point each person. (Ok, that is a little odd/sad, lol).
When we went to check in they were having a hard time finding her appointment in the system but when they called IR they knew we were coming. A nurse from IR came to get us. We went back into this area between the different IR rooms. I was thinking as we drove up how medical this area of the hospital feels. I know we are in the hospital all time but that place is decorated to not look/feel like a hospital all the time. This area does not have anything to make it look less hospital. The walls are white and there are a lot of big machines. 
The nurse asked if I wanted to go back into the room with Jillian for the procedure. Brent went and helped once but I never have. I suited up in a white whole body jumpsuit and a heavy apron. I got to walk Jillian in and put her on the table. I showed them were the g port broke this morning and they got the stuff to fix that part.
Jillian fussed off and on before it started but once they got going she was fine and it is pretty quick. She just looked at the wall for most of it. As long as she did not look at the guy in the room she did better. She has a thing about tall, thin, males in lab coats. They said her tube looked pretty clean on the inside compared to most. I complimented Jillian on making it to a routine tube change. It is the first time she has gone 3 months without a problem with her tube. It normally clogs beyond unclogging or falls out about 6ish weeks in so making it three months like it is suppose to it a big deal. They were also talking about how cool her belt was and I told them where we got them. I LOVE her belts. They make keeping the tubing contained so much easier.
After it was over we headed back out of the room and I got all my fun clothes off. We had to stop back at registration because they forgot to do something and then we were on our way. It is always so nice when tube changes go smoothly.
After we left Jillian and I hit the mall to pick something up quick and then headed home. During the afternoon Dan hung out with Jillian for a little bit so I could call billing departments at different places that there are issues. I love it when I call someplace and they have no idea why we were sent a bill for something that our insurance already paid for. In the evening Jaime and Jason came over and we had such a good time hanging out and laughing.

In other news... her next round of testing has been scheduled for March 5-6. We are excited and nervous for this.

My ear is not bothering me... I'm just sticking my finger in as far as I can for fun

Daddy got me a new toy... Then pretended to arrest me with it!

I dont want this neb!

I think I am all that when I get to play with kitchen stuff

sniffle sniffle

Jillian has a gross nose today! It is not a constant run but instead sneezes with a massive mess. Yesterday she was pulling at her right ear a lot. She has just been off today. We went to Target tonight and she did not smile for anything. Not even the Cinderella Little People which she normally lights up for. She was crying when going to bed too, which is something that is super rare for her.
Is it bad that when Jillian gets a cold I start thinking the worse and preparing for problems. Maybe it is her track record. Hoping this running nose just stays that. There is always hope.
Today she has also been attached to her passy. When she has sinus drainage it seams to slow her gastric emptying and she spends the whole day puking mucus into her mouth. Luckily so far today she had been able to keep in in her mouth and swallow it back down.

Last night Brent was in a very minor car accident. No one was hurt and they were going less then 5mph. He stepped on his breaks and nothing happened and ended up rear ending the car in front of him. There was no damage on either car. Today we took the car to a local mechanic. The figured out that it was the breaks that needed to be replaced. They were working on that today and we will be able to pick up the car tomorrow. We are just grateful that no one was hurt and there is no real damage. 

Over the last day our thoughts have been with our "family" at Children's Hospital of Wisconsin with the shooting that occurred there yesterday. Jillian's first two admissions were on the 7th floor (where the shooting occurred) What I can tell you is that some of our favorite people in the hospital are on that floor. They taught us how to do tube feedings and helped us fight for our daughter. What I can tell you as a parent who has spent much time there is that I am sure that everyone did the best they could in the situation at that time. They worked their hardest and tried to do the best for kids because the vast majority of people around there would not know what to do but the best thing for kids. Without a doubt I still feel very safe there. The security guards know Dan by name from him visiting so much when we are there. People make unwise decisions in all sorts of places. Sadly yesterday Children's was the place this person chose. I still trust them with the safety of my baby.

On a happier note, we are getting ready to celebrate Jillian turning 1 in a month! We are so excited to be coming to this day! It has been an interesting journey to get to this point and we want to share this day with all of the people who have supported us. We are having an open house style party on December 14th at our house. We invite anyone who has supported us in any way over the last year to join us in the celebration! This party will be a little bit different then the normal 1st birthday party because, Jillian thinks her normal is more fun! Please join us!

Walk-in and a new passy!

Friday night I slept on the floor, thankful that we got rid of the old, yellow, shag carpet that we use to have, however the wood floor we put down is not super comfy. Jillian kept coughing and then she would spit out her passy and cry. We did this all night long. She was probably a bit off too because her rock-n-play was getting washed because she peed all over it the night before. It was a loooooooong night at our house.
Saturday morning Brent went to go get a snow blower from his Aunt Linda (THANK YOU!) because they are moving. Jillian and i headed into Kenosha so mom and I could get our nails done. Mom and Jillian were hanging out first and mom bent over to give Jillian her passy and messed up her calf so we went to the walk-in instead of nails. I figured while we were there i would get Jillian checked out for her nasty cough. The nurse weighted Jillian (18lb, 6oz with clothes and wet diaper) and took us in the room. She said that she was not sure they would do much for Jillian because of Jillian's tube (something I have heard from multiple dr. and many tubbie parents complain of). The dr came in. She looked at mom, and said that she needed an MRI but they dont do that at the walk-in so go home. She then looked at Jillian. Listened to her breath. Asked me about Jillian's tube and gave her antibiotics. I felt like the dr was unsure what to do with Jillian's cough so she just threw Amoxacillian at us. She never looked at her nose, ears, throat ect... AAHHHH. Yes my kid has a tube, but that does not mean that she does not get ear infections, croup, ect that need to be looked at a treated like a regular kid.
We went to mom and dad's and hung out. Brent came in a joined us and we ordered Chinese for dinner. We watched to original "Yours, Mine, Ours." Jillian had her first time sitting in the bathroom full of steam since we forgot her humidifier at home.
Jillian decided that her bedtime was midnight... another time of coughing. She woke up this morning coughing too. Brent and Dad were out to church early so it was the thee girls this morning getting ready... limpy, sneezy, and me :) Jillian kept puking large amounts of flem. I was known for puking a ton of snot when i was little. She needed a change of clothes before she got out the door. 
After church we went out with Brent's parent's for Debbie's birthday. She loved Jillian's new photos. After lunch we went to Babies R Us. Then we came back to my parents. They watched Jillian for a little bit while brent and I went to the Jelly Belly fair. We went last year and Brent and I rode the Farris wheel. I feel very strongly that Farris Wheels are very scary, but I did it for him. He asked me to go again with him this year so we went and this year there was no Farris Wheel (YEAH ME!) so we got some jellybeans, and had a lemonade shake up and a funnel cake. Then made a quick stop at Goodwill then headed to my parents. Brent headed back to our house and Jillian and I hung out with my parents. Jillian got her bottle around 8 (it is hard to remember sometimes to feed a child who does not care about eating). Within 5 minutes of eating she had a substantial size puke. She started coughing more so I decided I would put her in the steamy bathroom again. After she sat on the floor for awhile I turned the water temp down and let her sit under the water. She LOVED it :)
She has continued spitting up gunk all day but nothing like this morning. He cough is a little bit better today, we will see how tonight is (I am so hoping for sleep). Right now she and grandpa are walking around the house and she is just about asleep. Tomorrow we have an appointment to get the van new brake pads (hence why we r still in town)
We are working on moving her to a new type of passy. I want to get her using one that is better for teeth. She is not sure about it but is taking it.
Well, she is asleep for the moment... I'm going to try that too

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.

The weekend

Friday night we were amazingly blessed by a family from church with food and other things to take care of us! We were brought to tears by there generosity just as we have been by so many amazing people. We are so blessed to have people around us that love us and Jillian. Just knowing people are praying is amazing. We have had people we barely know come up to us and tell us they are thinking about us and we have created many new relationships with people in our journey with Jillian. Looking back on the last few months we can see several places where God has placed just the right person in our life. Like just the other night Jillian needed to go on a new med that needed to go in her tube and our doctor was able to call our pharmacist and ask for a recommendation on a med. She has able to give him not only a professional reference but also a personal one because she has a kiddo with a tube too.
Friday night our friend Dan came over and spent the night so he could help us around the house on Saturday. We are so blessed by his friendship. He gave up his Saturday to come and help Brent with projects around the house. We are currently on working on getting our house ready to have a 25th anniversary party for my in-laws here. When we bought the house 8 months ago we knew it needed work but it has been a lot more work then anyone was expecting and with Jillian we have not been able to get done very much lately so now we are in a little bit of a rush to get things done. We are fortunate though that next weekend some of our friends are coming out to help us work on projects!
Saturday Jillian was very cabby. Between having an ear infection and not pooping since Tuesday she spent most of the day crying. She did poop in the afternoon but it was not a pleasant experience for anyone in the house. The boys vacated to a different floor from the smell. Honestly I am not sure if I have ever smelt anything that bad before!
We went out to dinner for Seth's birthday and then the girls went to Kohl's to get me some summer clothes. I am down 4 pants sizes since before I got pregnant meaning I did not have any clothes for warmer weather. I was excited to find some clothes that fit!
Today we got up and went to first service for Church and then a class for Jillian's baby blessing next weekend. We had pictures taken for the service however Jillian decided she was sleepy at picture time and was crying. She ended up getting her picture taken with her asleep with her passy in her mouth.They told us that we could send in 4 more pictures for the service and Brent and I were talking about how we have great pictures of her from the hospital last week. Tonight as I was sending the pictures it hit me that thinking that I have great pictures from the hospital is not a normal thought but to me was normal. Sometimes it hits me how different some parts of our lives are. Some of my best pictures of Jillian are in hospital rooms and for us that is reality.
Jillian has been making up on poop today. She has pooped 5 times. I left a message for GI tonight to see if they want her to stay on the laxative with all of the poop today.
She has also started refusing the water this weekend. She only gets 15ml at a time of water at time. Yesterday she refused her water and today she refused it until 8pm. On my message for GI I asked if they had any suggestions for the refusing of water.
Jillian's cold has been getting better this weekend although there have been a few times that she has choked on the mucus that she has choked the mucus that she coughed up. Her eyes are not as goopy today and her nose is not a faucet. I need to figure out a way to clean the bridal in her nose. It is green now from her cold but if you touch it she c
ries and they said it hurt her, but the thing is so nasty!
Well time to put her to bed. It is kinda nice her not having an exact bed time anymore. There are some advantages of being on a pump 24 hours a day :)

The eyes, the ears, the nose, the poop!

We have been figuring out Jillian's extra appendage. The nice thing is that we can place it in the middle of the livingroom and she can get to most places in the room. We tackled going to the doctors office and visiting work. I have decided that I need a bigger carabiner to clip her backpack to things. The carabiner that we have now is not big enough to clip onto the things I need it to. Supposedly Walmart and Target carry a bigger one that is meant to clip onto strollers to hold shopping bags.
Last night Jillian got a bath. Those seam to be one of her least favorite actives. She screams like we are hurting her. We have tried many different things to make her not scream but nothing seams to work so we just do what we have to do to get her in and out. We found the the door knob in our bathroom is a good place to hang the backpack.
After her bath she fell asleep in daddy's arms. She was so out that she did not even notice when she swaddled her. When I went up to bed she was coughing. She was coughing and then choking on her mucus. Poor little thing. I stayed up for a while to make sure she was ok. It is not a good night sleep when your kiddo is coughing. She was also up at 6am coughing and crying.
This morning Jillian and I both woke up on the wrong side of the bed (poor Brent!). During the morning Jillian and I hung out at the house and I got things done. She slept a lot. She did take her 15ml of water, which she choked on :(

She had a 1:30pm doctor appointment with one of her pediatrician's colleges. They weighed her and said she was 13lb 6oz. I am pretty sure that is not a correct weight. I know she is eating more now but I am sure she did not gain 6oz in 2 days... She is suppose to gain about an once a day and three ounces a day would be crazy. The nurse also said the another parent questioned their scale this week so I think it is them. I want her to gain weight but in a healthy manor.
She was running a 99.5 temp when we got there which does not surprise me because she had a shot 10 days ago and she is sick... 
The doctor then did the exam. He went to look in her ears and they were so full he could not see in them. He ended up cleaning them out and then looked at them. He said the one ear drum is tilted which is common in  kiddos less then 2 months old but is kind of odd in a 4 month old. I'm not sure what that means... He also noticed that she has an ear infection :( He said that because she has an ear infection and eye drainage that she needs to go on antibiotics.He called the GI clinic to see if there was an antibiotic that they thought would be best to be put down her tube since we are trying to do as little by mouth as possible. He called me back tonight and said he never herd back from GI so he called our pharmacist and they figured out a good antibiotic to go in the NJ tube.  Hopefully it helps her to feel better.
While we were at the doctor office she pooped! It was a good amount but not nearly as loose as you would think it would be for a little girl who has been on laxatives for a week.
I noticed the other day while I was on the Aurora website that you can reorder your supplies online. I figured I would try that today before she is in desperate need. I got an email back saying they got my message. The one thing I noticed though is now I don't know when they might be coming. If I don't hear from them Monday then I will need to call them. I wish I could get it to automatically set to deliver the same supplies that we always need on a certain day but it seams like I need to contact them each time.

baby in front, pump in the back

After the doctor office we went to her daycare and taught her teachers how to do her tube. The nice thing is that I work there so if there is questions or problems I am able to help. Luckily the Kangaroo Joey pump is pretty user friendly.
Tonight she is very cuddly :) We are weighting right now to head out and get her meds.

The First Night

We have been home less then 24 hours now and so far it is going just fine. Last night she curled up on the couch with Brent for a while and I went to Walmart to get her meds and some food.  Funny how things expire when you are not home.
She was coughing a lot during the night. She seams to cough more when she is sleeping. She spends all of her day in an elevated position so that would not be a factor. 4am is seaming to be a bad time for her cough. She coughed a lot from 4-6 this morning. She and I ended up hanging out in bed most of the morning just chilling. It was so nice to not have people in bothering us all of the time. I'm not sure why but I seamed more annoyed by that this time around.
Her congestion seams to be off and on too. Sometimes her nose is a faucet and other times it is dry. When she woke up this morning her one eye was so full of gook she could not open it. I wiped it off with a wet wash cloth and she like that because she could hold the wash cloth.
I just ordered her a new backpack from Pumpkin Packs! They are feeding tube backpacks that should be a little easier to use then the some that came from our DME. I still think the backpack we currently have is meant for a different brand of pump because ours does not fit into it right. I am excited to get it in the mail. I feel a little bit like a five year old waiting for a toy to be shipped and it said on their website that it will be a 3 plus week wait to get it. Before Jillian went into the hospital my mom and I ordered a canopy for her car seat and that arrived while we were at CHW. She currently has a winter cover but this will be nice for when it rains and springtime. It is like a blanket that has Velcro on the top to attach it to the car seat handle. It will be nice to eventually take off the winter flower cover that she has.. it just has to warm up. It is April and we just had to have more propane delivered to our house because we need to have the heat on still. Wisconsin!
I think overall Jillian is happy to be home. She has loved standing in her jumper and she had the biggest smile when we put her in her rock-n-play last night. She has been enjoying being in her swing this morning and "talking" to her toys as she tries to eat them.
Well its diaper changing time.. still waiting for normal poop. We have had no poop again since Tuesday and she has been on a laxative since Monday...

HOME!

Jillian was up a few times last night whining and coughing. We got a lovely wake up call though at 5:50 this morning (she was up from 4-4:30). I woke up to Jillian out of her bouncer and in her crib, her pulse ox monitor on the bouncer and someone I had never met standing over my child. This is not the way any mom wants to wake up! The unknown person introduced themselves and told her she was there to draw blood... at 5:50 in the morning! I know they don't sleep at the hour however I had finally gotten my kid back to sleep and myself. After being poked Jillian decided it was time to be up for the day...
The first doctor came in and asked me what my goal was for going home. I said that I was not taking her home while her our plan for feeding her included something she was choking on without a plan to get the choking to stop. So it was decided that she would not get any milk mouth so she would not choke.
Rounds started and they decided we would try two 15ml water bottles again today. She also got another dose of laxative because she still is not pooping right. They briefly talked about switching her to Enifamil AR, but the dietitian said that was not a good idea. I have a milk allergy so I am dairy limited and Jillian is on Alumentim which is for kiddos with allergies so it has milk broken down differently. AR is milk based and they don't want to rock the boat and move to something that has more dairy in it just in case it is a problem. After round's Brent's mom came to visit Jillian and I for a little but. 
Case management came and visited us. They called our DME (direct medical supply) and had it arranged so we will get NJ supplies now. She also called our home pharmacy with our insurance company to let them know that Jillian grew (YEAH!) and her and her dose of antacid needed to change.
The dietitian came back and asked when and why we switched to 24cal milk. I told her it was switched when we were admitted and I have no idea why. She said our current amount of food per day is significantly more then when we came in and that is why we have been seeing the amazing weight gain (plus she is not letting any of it go!)
I then had the joy of getting all of our things into the car. It took me two trips without Jillian first. Then I came back up and signed the discharge papers. On our way out we had to stop back at the GI clinic to have Jillian  weighted on the same scale she was weighed on last Friday. Her weight was 13lb!!!!!!
Jillian's swabs came back negative for any nasty viral infections so she just has a run of the mill upper respiratory junk.
We now have follow ups to do! We see one of her pediatrician's partners this Friday to check on her upper respatory junk. We see her pediatrician next Wednesday for a weight check and follow up. We follow up with GI next Friday for a follow up and our genetics appointment was set up for June. This momma is going to be running :)
Tonight we have been trying to adjust to life with an attachment. I think this next 24 hours will be the hardest.

cue the Jeperdy waiting sound...

Today was wait day.
Jillian developed a cough over night that kept waking her up. The nurse had the doctor come in and listen to it and they decided it was either irritation from the new tube and bridal or she is coming down with something. As the morning went on her cough continued and she developed a runny nose with lovey green gook. By tonight the cough and nose are a little bit better except now she has started to cry when she coughs. I would imagine her throat is quite irritated.
Other then the cold symptoms today has been rather uneventful health wise. She is going continuously on the pump (I had a nurse want to shut it off this morning) and seaming to do well with that. She had 3 bottles with water in them and did well with them. You can still her refluxing anything that she takes by mouth (including her acid reflux meds) but because she is getting so much less by mouth it is not as bad.
Today I left the hospital for a little bit to go to church. It was our church's 90th anniversary! Jillian is the 6th generation attending the church and it has been such a large and important part of my life and our family's life. It was good to see my dad up on stage playing guitar like he has for so many years. Our church first started a contemporary service on Saturday nights when I was little and my dad has played in the band ever since it started. I enjoyed the service and the celebration, it just would have been nice to have Jillian and Brent there too.   
Tonight we had more visitors. Dan came over and he and Brent ran to REI. It was good for them to get out and spend some time together and in a place they enjoy. My parents came up this afternoon too. Seth stayed in Kenosha to work on homework and he was not feeling well. He went to the walk-in clinic after church because he was afraid he had pneumonia again (He was in the hospital for 15 days in November with double pneumonia, a staff infection, infected shoulder, and sepsis that led to organs starting to shut down). Luckily he does not have pneumonia currently however he is experiencing chest discomfort.
Our friends JR and Heather came up with their kiddos Eli and Jolie tonight. They brought everyone cookies which was a good ending to the Cheesecake Factory take out mom, dad, Brent, Dan and I had for dinner. It was fun to visit with others.  
While dad and Dan went and picked up dinner mom took Jillian for a little while and Brent and I walked to the family lounge so we could have a little bit to catch up with each other. Even though we have been with each other most of the day for the past two days we have been in take care of the baby mode so it was nice to get to catch up with each other and talk about the week ahead.

All the people still in our room after visiting hours were over :)

Well, it is starting to become a trend of everyone around me snoring so I think I am going to pump and put little miss to bed in her bouncer (she is "helping" me type right now by sitting on the mouse pad part of my laptop asleep). The hospital crib is just too big for her to sleep in and she ends up at the end of it turned sideways so we are very grateful that grandma and grandpa brought up the bouncer from their house. I will update tomorrow as we know what is happening. Tomorrow we should have a new plan of what the next few days will look like and what tests we are going to run.
Goodnight all!