Run, Run, Run!

Friday:
It was our 4 year wedding anniversary! It is one of those things that feels like yesterday but forever ago. Brent took the day off of work to get the house ready for the party. He kept Jillian home with him and they spent the day running errands and cleaning. During the day Brent's grandparents came over to spend time with Jillian and help out at the house. After I got done with work my parents and Dan come over. Dan spent the night.

Saturday:
Brent woke me up with waffles! Yummy! Jillian decided to sleep in til 8am!!! She peed through her overnight diaper she slept so long :) We started cleaning up around the house and Brent and Dan started outside. In early afternoon Brendon, my parents and brother came over to work on the house. We ordered pizza for dinner and mom and I ran into Lake Geneva to pick it up and go to walmart. After dinner Brent's dad brought out things for the party. The boys had a bonfire and mom and I worked on putting away Jillian's laundry.
Jillian's allergies are really bothering her. In just running to walmart her eyes puffed up again. Poop baby. She has a cough, runny nose, and still has a little goo in her eyes.
In the morning she had a blow out diaper. One of those to her hair poops! 

Sunday:
Up and at it early! I went to put the news on while Jillian was sitting in her Super Seat. There were racing cars on instead of news so I started flipping channels and came across Curious George. Jillian about jumped out of her seat when she looked at the monkey. I figured I would let her watch it for a little while. We don't normally let Jillian watch TV but this was just too cute! As we were about to leave Jillian pooped again. I took all of her clothes off before I laid her down to avoid the poop leaking out when I laid her down. Thankfully this worked and I did not have to find new clothes.
We headed off to church and Jillian loved watching grandpa play guitar. After church Brent went with Jillian back to the house and my mom and I ran to the store to pick up some last minute things for the party. We got back the house and Brent's parent's, grandparents, brother and Dan were at the house getting things ready. My dad and brother joined us shortly after they got done at church.
The party started at 3 and people started arriving just before 3. Around 4pm it started to rain and most people moved into the house. This worked perfectly because around this time Brent came to get me. We had a problem... each time someone flushed the toilet, poop water flowed into the backyard! I was so grateful for the rain at that point because it got people out of the yard. The party went on like nothing was happening other then a little rain. We did not want to spoil the fun for everyone.
During the party my mom hung out with Jillian. I am not a fan of the game pass the baby. It is too easy for the tube to come undone and leak everywhere. Also, she is already fighting an ear infection, and allergies and the last thing she needs is to pick something else up.

Working to get anything in the line

When we were cleaning up from the party Brent went to give her meds in her tube. He started with a water flash like normal but he could not get the water to go in at all. He would push down on the syringe and water would fly out everywhere. I came over and gave it a try. We tried different syringes, temperatures of water, and all the other tips we have gotten from GI and nothing was working. I called Dan's mom to see if she had any ideas and she said we needed to get her seen. I called the hospital and they paged the GI fellow on call. They called me back and said we would need to come it to try to get it unclogged and if that did not work we would need to stay the night and wait for morning to get it changed out. We started packing our things for the hospital stay and to stay at my parents until we could use the bathrooms at our house again. The packing was more like throwing but my mom helped us get things together and we got out the door kid of quickly. We left the hospital with people still in our house and instructions with Dan of what needed to be done before he locked up.
When we got in the car my mom called my Aunt Sandi and told her we needed prayers that they would be able to unclog the tube. Part way to the hospital my gas light came on so we stopped in East Troy for gas. I told Brent to try it one more time and he pushed a little and it started to go. We were able to flush 10ml into the tube! Whatever had been clogging the tube was gone! Since we no longer needed to go to the hospital and we could not go home we headed to my parents. My dad, brother and Dan met us there and we all hung out for a little bit before going to bed.

Monday:

Helping make pancakes

We woke up and my dad was going to make us pancakes however he did not have enough eggs, flour or milk to do make them so my mom and I ran to walmart. We picked up the food and some bottles that have the same nipple shape as the passy she loves to see if she would drink those better. We came back and dad made us all pancakes. After breakfast we ran to Ann Taylor quick since they were having a big sale and I am working on building up a new wardrobe since my clothes are too big. I got into a size 4 pair of pants!!! We also hit Carters since they had up to 70% off! Jillian got a few new things in bigger sizes :)
We ran to Target to pick some times up quick. Mom and I were checking out the clearance and came across the base for Jillian's car seat on clearance. Someone had returned it from an online order and it was over 50% off. We had been looking for a base for Brent's car for a while but no one was selling them or they where really expensive. I was so excited!!!

The roommates! Dan is moving back in

We decided we would do dinner together as a family since my brother is leaving for New Hampshire for the Summer on Thursday and we are not all going to be together between now and then. My brother mean a lot to me. We have not really been the fighting siblings and have gotten along so well. He is an amazing brother. When our heat went out in January Seth came over and helped me with Jillian and dealing with repair guys. He is very protective of his big sister and niece and would do anything for us. We almost lost him this year. He got very sick in November and almost died. The doctors told us that if he had not gotten to a hospital when he did he would probably not be with us. We call him and Jillian our little miracles.
At night Brent was holding her and she pooped. He changed her quick and put her in pajamas. He picked her back up and they were playing again and she pooped a second large poop. Hopefully she is starting to get some out! We all thought it was funny though! We tried Jillian's new bottles. She still only took 1/2 of the water :( We will keep trying

Tuesday:
Brent, dad and  mom had to be at work. Jillian and I slept in a little. I gave her a water bottle with one of her new bottles and with a little coxing and work she took it all!
I called the pharmacy because her laxative is suppose to be a 30 day supply but I picked it up on the 13th and it ran out this morning. With the amount of measuring we do I knew we did not mess up that much. I called and they said that even-though the bottle said quantity of 30 2.5ml doses there was only 12.5 days worth in the bottle because they only put 12.5 days worth in the bottle. This is a problem on multiple levels. First, I now have to pay again to have it filled for the rest of the month. Second, my insurance only pays for 3 fills of the same prescription a year at a store. The rest we have to do mail order. This now counts as one of my fills and we dont see GI until the 7th to get a prescription to mail in that will still take a week or so to get filled after I mail it! GRRR!
I also called med supply. On the 1st of the month we got 30 bags for her pump. This is a 31 day month and the 1st of June falls on Saturday so I need more bags this week. I called and the lady asked why I would need more bags now since I ordered at the 1st of the month last time. I explained the math and she said I can only have 35 bags in 1 month and I can not order another months worth of bags until the next month. She said she could ship me the 5 bags left that
I am able to have this month and then next week I had to get a delivery of the 30 bags for next month! GRRR

When I left the room she was on her belly

This morning the guy came out to pump out our septic to see if it was just full. He pumped it out and said that the septic system had a problem and we would need to call someone else to fix it. We are now waiting for them to come out and hoping it is not a big costly problem.
This morning Jillian spent some time with her uncle Seth. He had to leave and said goodbye to her and she started uncontrollably screaming. She is going to miss him a lot!

Well, I'll keep you updated on the backyard poop situation, and the Jillian poop situation... and those silly bags!

4 Months Photos

Jillian is only 5 1/2 months old but I finally got a photo collage together of all the pictures when she was 4 months. She spent part of it in a hospital so many of the pictures are from there. Enjoy!

The ears!

This week has been CRAZY! We are trying to get ready to have a lot of people over this weekend. We are so grateful for Dan, my parents and brother who have all given up their time to come help us get the house ready. They all work over 40 hours a week (Seth is a full time college student plus doing a project for NASA).  We are so fortunate to have them.
I am also so grateful to have some other wonderful friends to talk to when days are long. I am so grateful.

Jillian currently has an ear infection. She has green goo running from her eyes too. The eye stuff is from the ear infection. She is on antibiotics again. We had to go with a different antibiotic this time because it has been less then 30 days since she was on antibiotics last and you can't be on the same antibiotic twice in 30 days. We know this is a new infection because two different doctors looked at her ears between the two infections and said they were completely fine.  We were also told that her tube going in her nose puts her at an increased risk of sinus/ear infections. Hopefully she does not get too many more infections like this.

Jillian is currently on laxatives but it is not making her poop regular. She is still working at times to poop and not pooping regularly, but other times it comes out ok. We are currently working on figuring out the right amount of laxatives. 

People have asked us a few things about Jillian and life with Jillian and I just want to make a few statements to answer some questions/comments:

• Jillian needs to be near a children's hospital at all times. We can not put her tube back in and not all hospitals have the facilities to put the tube back in (an interventional radiologist has to put it in). This limits the places we can go and where we can travel. Plus traveling with her is more then just the normal "baby" stuff. It is the normal stuff plus the tube stuff making it feel like we are moving out anytime we stay the night someplace.
• Jillian gets all her food from her tube. She gets NO food though her mouth. She does get water that she still chokes on at times. Giving her food by mouth is not an option because of the choking and vomiting. If Jillian's tube comes out she is not getting nutrition which is why it needs to be replaced quickly. She gets the same amount of milk in a day as a typical baby but she only gets a little over an once every hour. She needs to get the correct amount of milk a day to grow and be hydrated.
• I don't know when the tube is coming out and no I will not guess for you. All I know is it is in there for now. I see the tube as a life saver, and as much as I want Jillian to eat "normally" I am not running today to get the tube out because I would rather her be healthy then have the tube out. 
• We are not trying baby food right now and the doctors are not even having that conversation. The APA  recommendation for starting baby food is 6 months old and she is not that old anyhow. 
• No my child would not be happier with "real" food. She is a baby. She should be getting milk, she just gets it a different way and if you ask me I think she is pretty happy.
• No we are not currently looking into taking Jillian to any other specialists (ie second opinions). She is following a very common course of treatment for her symptoms and I don't think anyone else would have any other opinion and what we are doing now is working. Jillian is growing and developing and that is the goal. I like her doctors and I trust what they are saying.
• Nope, I don't know her exact weight today. We do not weigh her everyday :)
• We don't really leave Jillian. She comes to work with me and while she is in her own classroom I am in the room next door.  Brent and I dont really go places without her. First we really like having her around and we feel like we dont get to spend enough time with her as it is so we like to be with her as much as possible. Taking care of her is a job and a job we feel is ours. There are many things that need to be done to take care of her. I joke each night that I am the chemist as I am mixing milk and measuring things. Her pump likes to error at times and there are many different things that need to be done to fix it. Jillian is also on multiple medications that need to be given a specific times of the day in specific ways. So while we are very grateful to the people who have offered to take her but it is a very limited occurrence that us leaving her happens. Also whoever takes care of her has to be currently infant CPR certified and have spent a lot of time with her to know all the "Jillian" things. Call me an overprotective mom, but this is what we feel is best.
• Jillian is currently growing into 3-6 month clothes! I have started packing away her 0-3 month clothes! She has been in them since she was a month old and it will be nice to hopefully have her in all 3-6m clothes by the time she is 6m. No, I don't gauge how she is doing based on clothes size (I try to always remind myself that clothes have arbitrary numbers... I bought a size small pants the other day...) 
• Jillian's pump is filled at 6am, 10am, 2pm, off from 6-8pm and refilled at 8pm, 10pm and 2am.
  
• Yes I have lost weight. I was 196lb before I got pregnant and I an down around 150lb. My secret... having Jillian :)

If you have any more questions... ask. But remember that this is my baby we are talking about. Also feel free to check out this article about tube feeding from feeding tube awareness: http://www.feedingtubeawareness.com/for-friends-family.html

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.

To Indiana We go!

Wednesday:

I played phone tag off and on all day with GI. In the morning her poop still had not really picked up the pace nicely and she was crying a lot with gas. GI decided that we would keep her on laxatives now continuously now and we would just adjust the amount up and down instead of taking her off and on. We will see how that works.

The poop started to flow on Wednesday. She needed new cloths twice at daycare. Still a lot of screaming with the poop.

At night our friends Jaime and Jason came over for dinner. They had not seen Jillian in a few weeks and were impressed with how much she had grown since they had seen her last. It was fun to get to talk and catch up! Sadly I started falling asleep on the couch while they were here. They are not boring people by any means, I was just so tired from the little sleep I have been getting right now with Jillian’s cough. As soon as they left we headed right to bed.

Thursday:

I woke up early to Jillian moaning and I needed to pump. I then just stayed up and stated getting things done. I got out the door a few minutes before I had to, which it is always nice when Jillian and I are not in run mode. I got to work (around a 20 minute drive) to find out that I had forgotten to put her milk in her bag! I got her all settled and then ran back home to get the milk. AHH! I got back to work and everything was fine but it was not the best way to start a morning. Jillian pooped through her clothes 2 times at school.

In the evening we watched Big Bang and packed for our weekend. It is a trip packing for Jillian. Brent and I packed in one suitcase together and Jillian had her own plus other smaller bags. I feel a little bit like we are moving out when we take her someplace other then my parents for the weekend. There is all the normal baby things that need to be packed (including  clothes for a baby on laxatives)and then all the things to go with the tube. I finished packing in time for her 10pm fill and punped and went to bed.

Friday:

It was an early day for work so Jillian and I were there at 6:50am. I got to work and went to put her milk in the fridge and felt something wet. The milk bag inside the backpack was open and when I bent down the milk came leaking out all over me, the ground, and Jillian’s carseat. I quick cleaned up the floor, dried myself a little, put a little milk back in the bag and got Jillian set. I had a lovely smell the rest of the day of fortified breast milk and my sweater was a little crunchy. 

When I got done with work we headed to the house and met Brent there. We packed up the car and talked to our friend Dan for a little bit (he was staying at our house for the weekend). We headed into Kenosha to my parents house. We had Chinese food for dinner and I headed to bed early while my mom hung out with Jillian. It was so nice to get a little extra sleep. Jillian was up for a while in the middle of the night coughing and upset.

Saturday:

Jillian got up early coughing. My mom herd her crying and came in by us. The three of us headed out to the livingroom to hang out so others could get some more sleep. Once everyone was up we packed up the car, picked up one of Seth’s friend and got on the interstate. The drive through Chicago was easy and we made great time to Merriville, IN. Mom, Jillian and I got to the hotel first and checked in. The boys and our friends Sandi, Tod and Dan (Cheese) met us there. We all got settled and the boys left to get lunch and go disk golfing. This trip was for Seth’s 21^st birthday and he loves to disk gulf and there is a great coarse in that area and it is ½ way for everyone to meet. The girls went for lunch at Penera  Bread and then headed to Michigan City to go shopping at the outlet mall. It was a little chilly and overcast when we first got there but it was perfect weather for shopping at an outdoor outlet mall. We had a lot of fun shopping and did a good job at filling the back end of my mom’s car with all of our finds. When we first got there, I thought I would smell poop so we headed to the family bathroom and sure enough Jillian had pooped on the drive and it was up her back and all over her carseat.  Luckily, there were three adults there and we got her changed. 

On our way back from shopping Jillian started coughing. The cough turned into a choke. I think she was choking on the mucus she coughed up. She just could not stop and we were looking for the next exit to pull off and get her out of the car seat to help her. By the time we got to the exit (a few min later) she finally stopped coughing. She started turning colors while coughing. I was really scared! By the time it was all over I just wanted to cry! 

Around dinner time we headed back to the hotel and the boys were there waiting for us. We then went to a Mexican restaurant for dinner. It was fun to have time to catch up. Jillian was getting fussy during dinner because it was her bedtime but she did a great job. We walked back over to our hotel (the restaurant and hotel were next door) and decided to hang out. We got Jillian ready for bed and brought her Rock-n-Play with us to Sandi and Todd’s room where we finished watching the Pacer’s game. Jillian hung out with grandpa for a little bit and then fell asleep and snored away in her Rock-N-Play. The boys went to Walmart and Sandi, Todd, mom, dad, Jillian, and I stayed back and hung out. Around 11 we all went back to our rooms and the boys returned shortly after. I caught a little bit of Saturday night Live (which I have not been awake to watch in forever) and went to sleep.

 Jillian had a hard night. She woke up around 12:45 crying and did not get back to sleep until around 2:30. She was crying on and off during that time. I felt bad for the person in the room next to us.

Sunday:

I woke up at 5:30 to Jillian fussing a bit again and I could not get back to sleep so I pumped and then Jillian woke up for the day once I was done. My daddy brought me coffee in bed and hung out in our room for a while. My dad went back to his room to shower and my mom came over and hung out with Jillian while Brent and I got ready for the day. We then all went down for breakfast at the hotel. We thought Jillian might take a nap but she was wide awake instead and liked to look at all of the people. We finished up with breakfast and packed up. The boys headed back to play disk golf and the girls went shopping.

Our first stop was Babies R Us to get more bottle lids. We also found a different brand of swaddling sleep sack while we were there that we picked up to give a try. Next we headed over to the mall. We got there right as shops were starting to open and get got to watch the Disney store open for the day. It was so cool because they had a little boy come and help and he got to wear a Mickey hat and robe. Hopefully Disney stores still do that when Jillian is older because it was really cool and felt like some of the Disney magic at home. There is just something about that Disney magic that makes me smile, and it made that little boy feel so special and important and that made it all worth it. We hung out at the mall for a little bit. Most of the time we were there Jillian was fighting to go to sleep. She has hit the stage where she does not give up as easily to go to sleep. She does not want to miss anything.   Eventually she gave in.

Once we were done at the mall we headed to  Portillo’s for lunch with the boys. Brent was the only one that had ever been there. It was crazy busy! It was good and I would go back again. We then headed back to Babies R Us so I could pump. Their Mother’s Room is amazing. It is a place to breast feed or pump that is clean, quiet and meant for feeding a baby. I go to Babies R Us while we are out so that I have a good place to pump and I always support their business in return. It is a win for both of us. I really wish more stores had something like this because I plan my day around pumping and I would probably spend more time in stores that had feeding rooms and more time translates into more money.

We then hit the road for home. As we got into the south side of Chicago Jillian let out a scream. I looked back to notice she had ripped all of her tape off and was pulling her tube. The bridle was the only thing keeping it in. We got off the interstate quickly and parked in a neighborhood  that was edging towards the rougher side. I replaced Jillian’s tape and we were off again. We got to my parents and unloaded. Mom and Brent picked us up Taco Bell for dinner and we watched America’s Funniest Home Videos. Then we loaded up our car and headed home. 

Jillian did poop out of her diaper sometime on the way home. It was not a ton of poop but she was sitting so that tends to send it everywhere. She has had a gooky eye for the past few days that is getting worse. She also has a cough and runny nose that are getting worse. She is pulling at her one ear a lot too. I am just trying to wait it out and hoping to not need to take her in.  

We came home to an amazing gift. We now have a brand new lawn mower. We were given one but it did not work and we were trying to figure out what we were going to do. We were so blessed not only with the new mower but a freshly cut lawn.

Brent and I would like to thank all of the amazing people in our lives! So many of you have prayed for us, brought us food, listened when we were having a long day, and genuinely cared about us and Jillian. We know God has placed amazing people in our lives that have blessed us so much. We don’t feel thank you is even close to enough for some of you but we will say it anyway THANK YOU!

4am... We are not friends!

Friday:

Hang on! Dad's driving :)

Jillian started off the morning with a medium size thick poop. We celebrate poop these days... and I celebrate it even more when someone else changes it, this time daddy got it :) We went to school and Jillian did not grace anyone else with more poop like I was hoping that she would. I was hoping maybe we had started the flow again.
When Jillian and I got home from work Dan was in the driveway working on fixing Brent's wheelbarrow. Brent got home shortly after and the boys decided that they needed another part to finish fixing it. I pumped and we decided we would just head to Lake Geneva for dinner.
We went to Taco Bell. I ran into a family that use to attend the daycare. We also had our first experience with kids asking loudly what is sticking out of Jillian's face. I don't mind when kids ask questions because they are truly trying to learn. One parent said the tube helps her breath (a great try from a parent, and an answer I find acceptable) and another parent tried to ignore their child however the child kept asking. I never did hear the parent answer their question. I would rather a parent give a good answer then say nothing at all so their child does not see it as something wrong or something to be afraid of. However at the same time I would rather someone say nothing then something dumb.
The boys then ran into Home Depot and Jillian and I hung out in the car while I reset her pump up. Before going on 24hr feeds I was terrified of setting up her pump anywhere but at home. Now I can change the bag in the Home Depot parking lot. We have come a long way. 

Saturday:
Flash back to collage. Dan spent the night here (our guest room is named "Dan's room"). Dan lived with us for a year  in collage and it felt like normal for the three of us to be eating breakfast together on a Saturday morning, now we just have a little addition.
The boys worked around the house on projects in the morning. They got the trim done in the kitchen! *Happy dance!* I got some cleaning done... not as much as I wanted but something is better then nothing right???
Dan headed out in the early afternoon and Jillian and I took a nap. Brent and I then decided that we had not been out to dinner the two of us in a while so we packed Jillian up and headed to Spreachers in Lake Geneva. It was kinda nice that the weather was not great because LG was not crowded and we were able to get a table right away. Now that it is getting nicer it is harder to get into places. It is one of the traps of living in a tourist town. That and I swear the prices at Walmart increase when the warm weather and money roll in. After dinner Brent was going to run to Walmart but instead we all hung out at home. I was really struggling with not getting the house cleaner during the day. I feel that it is my job to make sure that the house house is clean and presentable at all times. I want my home to be open to others but I struggle opening the door when people will trip over a  mess. I feel that is the house is not clean to my standards I am a failure. I know I have issues... As mother's day was approaching I was struggling with the house be a disaster. I don't give myself the credit that I am taking care of Jillian and all that entails, working full time, and we are in the middle of a lot of house projects right now. All I see is mess= my fault.  I told Brent that what I would love for mother's day is the kitchen cleaned up. So he put Jillian and I to bed and worked on the kitchen. I was SO grateful for that.
During the afternoon Jillian pooped once, about the size of a dollop of cool whip. Not all that impressive for her and for the lack of good poop lately. Dan called his mom (who is a nurse) and asked her opinion. I was able to talk to her for a little bit and that was so helpful! Jillian pooped again a little in the evening. We have also noticed that when she poops, if she has had water recently she pukes. If she has not had water to puke she burps or dry heaves.

Sunday:
Good Morning! Jillian had us up nice and early moaning and crying. Eventually we got her back to sleep about an hour before we needed to get up. We decided that we would try to catch a little more sleep too. The one thing neither of us realized was that neither of us had set an alarm. I woke up about 30minutes before we needed to leave. Amazingly we somehow got out the door on time.
We had a lovely breakfast with Brent's parent's at Cracker Barrel.  Jillian was sleepy but she was determined to stay awake and see everyone. For as sleepy as she was she did not fuss too much. Together we made Brent's mom a stone for her garden. Brent mixed the plaster and molded it, I painted it, and we put Jillian's footprint on it.
Next we met Seth at church. Jillian was not too thrilled during service and Brent spent most of the service in the hallway with her. After church we went to my parents so I could pump and then the 4 of us went to Target and Penara Bread. Their summer salad is back and that made me very happy! Then we headed back to my parents and my parents met us there (they were in Door County for the weekend). We then all headed to my grandparent's house for mother's day. Jillian was not feeling the best and was kind of cranky. She was just kind of off all day :(
We had no poop all day so I called the GI nurse line on the way home and left a message that we need a refill on laxatives and about the poop. Never thought i would be calling anyone and leaving a voice mail about poop!

Monday:
Good morning 4am! I am not an early morning person. Jillian was up crying and coughing and moaning. I have no idea what the problem was. I feel back asleep about a half hour before I needed to be up.
Jillian slept a lot at school and was kind of fussy. Her eyes look like allergy eyes right now so I am wondering if something environmental is going on now that it is finally warming up. She will be perfectly fine and then all of the sudden looks miserable. I am the same way with my allergies.
Brent got home from work before us so he made dinner and we all sat down to watch How I Met Your Mother. That is something that Brent and I set aside doing each week together. By the time the show was done my head hurt so bad from allergies I could not sit up anymore. Jillian and I went to bed around 8 after we turned her pump back on and Brent went to the grocery store.
Jillian took her water really well all day. She has not been drinking the bottle correctly and has been refusing to take more then 5ml. We can normally trick her into drinking by giving her the antacid med before the water (it tastes like cherry) but even then her eating is sloppy. All day she drank her bottles of water better then she has in a week. I have been concerned that she was starting to loose the ability to take the bottle correctly. This gave me a little hope. While her eating does not look nearly as good as when speech watched her eat a month ago, she is still able to get something in. Right now she is getting mad because she can not keep her passy in when she lays on her tummy. She wants to look around so bad but she wants the passy in too.

Tuesday: HAPPY 5 MONTHS!!!
Wow! It does not seam real that it has been five months already. It has been quite the journey so far but I am so blessed by this little girl. Happy 5 months baby girl!

Waiting for my shot

Good morning 4am... again! Have I mentioned yet that I am not an early morning person and that her pump gets refilled at 2am, and I pump from 2:10-2:30 and then have to get back to sleep so by 4am I have only been back to bed for a little over an hour? She was moaning and crying and flailing and coughing again. I got her to go back to sleep around 6, but only on me, so no sleep for mommy. We hung out in bed until 7 and then I needed to pump.
Jillian had an appointment for a weight check and shot a 9:30 so we left the house around 9 to get to East Troy. She is up to 14lb 9oz! (I wonder what it would be if she would poop right!) and the nurse gave her one shot and one vaccine by mouth. She said Jillian took the oral one better then she thinks anyone has. Jillian is use to only getting water and meds by mouth right now so for her it was not out of the ordinary for her to be gulping down a medication.
We then headed to Target. I figured I did not need to bring the whole diaper bag in for a quick trip, completely forgetting Jillian's pump was about to need to be refilled. We got to the middle of the store and she started beeping. I quick went and checked out and headed to the car to refill her. ops!
After we had been home a while I herd a noise in our driveway and looked out and the gas company repair truck was here. In January we had a problem where we had no heat because we had no gas coming into the house. After a day of searching for the problem, so money and a lot of repair men they figured out we had a mud wasp nest in the line that was now blocking the flow of gas. They took the nest out but told us more work needed to be done when it was warm out. So here today stands a repair guy that I had no idea was coming today and luckily was home for. He was able to do the work and it only is a little more money... but hopefully we should not have that problem again. When he was finishing up he asked about Jillian. I explained to him that currently she does not eat by mouth and she needs the tube to grow. He asked some good questions in really respectful ways.
While he was here Jillian pooped again. It was about a medium size and still thick. It took some pushing to come out and there was a good amount of gas first. Still waiting for GI to call back. Hard part is that her dr does not work  everyday.
Now we are curled up on the couch because she got fussy again. She is liking to be held on my left hip with her head just under my shoulder and her arms wrapped around me and a blanket on her back. It seams to be comfortable for her. Funny thing is that she has always liked to be held kind of like this. I remember the third night after she was born the only way she would sleep was like this. That night was a long night in the hospital since she wanted to be right by my c-section incision. 5 months later and she still loves that spot on me. So for right now I will curl up with her. I have to get some things done around the house, but I think they can wait a half hour more right...

Blah!

Tuesday:
It was my day off and we spent most if it waiting for the dr office to call back. She started the day pooping and there was still blood in it. Around lunch time the ped's office called back. The two doctors talked (the alternate ped and the GI dr) and they decided that they wanted to try putting her back on laxatives to see if that would stop the bleeding. The theory is that because we went back to 27cal it might be having a hard time getting through someplace in her intestines.We started her back on the laxatives aat bag change in the evening.
In the afternoon we went to Walmart. I had a coupon for their photo department and I got somethings printed off. I went to the register to check out and the coupon from their website would not scan. The lady at check out told me it was too bad that I would not be able to use my $6 off coupon. I said I would like to talk to someone about this. The manager came over and very rudely told me too bad. I explained that was not acceptable and that I would not have gotten all that I got if it were not for the coupon. Then they started listening. Magically when I said I was willing to leave the pictures they decided they could see what they could do. Magically the manager made it happen (with attitude) very quickly. I did not have it budgeted to spend $6 more dollars. If it were a 50 cent coupon I would not have said anything but $6 is a lot of money! I then called Brent and told him in the battle of me vs Walmart I had 1 point.

"sitting" in daddy's chair

That night my mom came over to help me get some things done around the house. Brent came home and said he did not feel good and went to bed before dinner (he normally goes to bed sometime between 10pm and 2am). Mom and I started working and I started not feeling well. Soon my tummy was in a lot of pain. I would feel fine and then I would be doubled over in a lot of pain. I kept trying to work but ended up falling asleep on Jillian's bedroom floor while folding her laundry. Mom put Jillian and I to bed and headed out. Falling back to sleep was not as easy as I was in a lot of pain at this point. Brent and I were both up several times during the night. 

Wednesday:
Brent and I got up and felt like we had been hit by a bus. I decided I would go to work (I'm stubborn, and I have missed a lot with Jillian being sick) and Brent stayed home. I took Jillian with me. She pooped once during the day but it was not a ton and was still thick. That night Jillian hung out with daddy while my mom and I went to Best Buy to get new phones. My dad decided for mother's day we both needed new phones (my wifi only worked sometimes, it only sometimes rang and only sometimes told me I had new voice mails...). While I was gone I guess Jillian had a fun time taking daddy's blanket, yelling at it, and then shoving it in her mouth. She is so silly! By the time I got home she was in bed.
Jillian also decided that she did not want to keep tape on. I changed it was soon as we got to work, once in the morning, once before we left work and Brent changed it again at night. In the night she got the tape off and it was just dangling from the bridle in her nose.This is the second time this week she has had the tube dangling from her nose. On Monday I was getting her out of her carseat and I did not notice that her line got hooked on her carseat and I tried to walk and the tube got stuck and pulled the tape off. She cried and cried but the line and bridle stayed in. I felt bad for her because you could tell it hurt her but I was grateful that the line did not come out.

Today:
Brent and I woke up feel better with just a few lingering symptoms. Jillian and I headed to work where she was in a good mood. I played with her a little during nap time and she had a good time laughing at my boss. Once we got home I decided I just did not want to put her down (I really did not see her much yesterday) so we have been spending most of the night together. We facetimed with grandma and grandpa and they told her stories and sang her songs over the phone. The best past is they were out to dinner during this so I'm sure other people thought they were crazy but they did not care, it was for their Jilliebean. Brent was amazing and did my noraml night time jobs so I could spend time with Jillian (mixing milk for tomorrow, freezing milk and washing bottles) and he made me brownies!
I gave Jillian her bottle while she was off her pump. She started refluxing it and wanted her passy. About 20 minutes later I forgot that she had just eaten and I set her on her play mat so I could go to the bathroom. While i was gone I could hear her fussing a little. I came back to a play mat full of puked water and a very wet blanket and passy holder. I then took the blanket away from her and she got mad. Silly girl would be fine hanging out in her own puke.
Before she puked tonight I was questioning if we are doing all the right things for her. The past two days have been really good for her and I was questioning if all of her interventions were necessary... and then she started refluxing as soon as she drank water, showed signs of being in pain and puked. It is such a balancing act of making sure that we are doing what she needs and not doing too much or something that she does not need. She has been so happy the past two days but I have to remember that is impart because of the interventions that she is getting. Before the tube she was not nearly this happy and spent most of her time crying and puking and things have gotten even better with her on the NJ. Sometimes when you are not in the tick of the worst you forget what it was like, but then she pukes on you and the memories return. The month before the tube Jillian gained no weight..none! And babies that age are to gain an ounce a day. She was down to the 9th percentile and now we are up to the 20th. She has come such a far way. One of her teachers said today that she finally does not smell like puke all of the time and I am not having to bath her all of the time just to get the rancid smell off of her so I don't gag while holding her (her uncle Seth would even make comments that she stunk!). I watched one of her classmates leave a trail of spit up on the floor today and thought that "well all babies spit up, mine can't be that different, maybe I'm expecting too much from her" and then I watched tonight what she can do with just 10ml of water and was reminded what she use to do when we fed her 45ml every 1.5hr and how we use to have towels around the house to try to catch the mess. I had to go looking for a burp cloth the other day because we not longer have stacks of them on the couch.  I am so grateful for the progress she has made and how much the tube has helped and when I stop to think about the difference I am reminded that we are doing the right thing for her.  For Jillian the tube is the right choice for her to be able to eat, grow and not be in constant pain. She still hurts when she takes her water but that is a lot less volume and frequent then her taking milk by mouth so the intensity is nothing compared to before. I am also sleeping a lot better because I am not waking up to her choking during the night. A few nights a week she still will choke on reflux during the night and I will wake up to that but it is not several times a night like it was before. I am not as scared about losing my baby during the night. Even though more medical testing and even surgeries have been discussed she is in a better place and those things might help her even more. No my child does not eat like every other child in her class however she can now eat without the intense pain, vomiting and choking like before and that is completely what makes this way of feeding what works best for her and made me stop second guessing myself.
 
Tonight she dropped her passy onto the tray on her superseat and found it and put it back in her mouth! We were so proud of her. She is really working at that!