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

Cough, cough, cough

Jillian was up last night with an HORRID cough! It was a scary sound. It sounded like a croup cough. She had an erratic breathing pattern. I facetimed my mom to get her opinion. She all sat and watched her breath for a while. Over a half hour her cough started to get better and she fell asleep. We decided we would wait it out. She was up multiple times with little coughing fits but nothing like the first one. She stayed in bed until 10:45, but was up coughing multiple times.

During the day she was really sleepy but she only wanted to sleep on my chest. She had a few times that she liked to play but for the most part she just wanted to be held. I took her on a walk to get the mail and her nose and cough got a lot worse. I am wondering if this is caused by an allergy to something outside. It is also 10 days after her last shot. Every time 10 days after a shot she has a runny nose and other symptoms. I have spent the day cuddled up with my little cuddle bug.

Tonight we were all hanging out. Dan went down to check the basement with all the rain and came back up with a picture of a little friend he found in the basement. It was a spotted salamander. I went down and got him in a show box. We gave him one of the gecko's crickets and brought him outside. We hung out with him for awhile and then let him go in the wood pile. Dan hung out with Jillian while we looked at the salamander. We have been watching How I Met Your Mother tonight and just hanging out.

The ER, the clinic, the home

Sunday:
Sunday mornings bring some lounging time at my parents house before we have to leave for church. Time to read the paper and the sale ads. Jillian and I were moving a little faster then normal because Brent had spent the night at home after moving Dan in and was coming in early to get breakfast with Jillian and I. Around 9am I stopped Jillian's pump to give her meds. Connect the water syringe, push, nothing moves, push harder, nothing moves, give it everything, water sprays at me... Clogged line! We try all the tricks and then Brent gets there. He tries a few times and then we decide its clogged and we are not going to be able to unclog it. We throw some stuff in the car (forgetting my pump parts however, but we remembered my pump), left my car and most of my stuff at my parents and hit the road. You make good time at 9:40 on a Sunday morning.
Made it to the ER and they were not busy at all. Infact we got a close parking spot. If you have ever been to the children's ER you know it is impressive to get a parking spot at all in the ER lot. Got checked in and they took us right to a room. Dr and nurses came in and looked at her. They decided they would try club soda because the carbonation can sometimes get it unclogged. We waited for the soda to come up from the kitchen and then tried it. Waited a hour to give it sit time and then tried again. Still no luck moving anything in, but people were getting showers of any liquid we tried. Jillian was being such a trooper! She was smiling for everyone and being a ham. She did not like it when they would try to plunger the tube and it seamed like that hurt her, but as long as people kept their hands off the tube she was happy! I love that about her. Around 3pm they gave up trying and paged the interventional radiologist to come in. We were lucky because we have always been told if it clogged on the weekend we were stuck in the hospital til Monday because the radiologist does not work on the weekends, however he came in on Sunday! Normally when they place an NJ tube there are a lot of people in the room, but since it was a Sunday they only called in the radiologist and a lab tech, thus meaning they needed more hands to be able to place the tube then they had on staff. So Brent suited up in a zebra print led vest and white paper jumpsuit and joined in the "fun." Normally on a weekday they have parents wait in the waiting room, but today there was no one in the tech room so I got to hang out there and watch the screen of her insides as they placed the tube. It took about a half hour of her screaming for the tube to be placed but at last it was over. When they handed her to me so Brent could get undressed she grabbed on like never before. We went back to the room and they had us do the first 15ml of her feed to make sure it worked and then let us go home a little after 5. We were exhausted.
 My parents packed up all of our stuff from their house and drove my car out to our house and brought us dinner. It was so nice to get to bed!

Monday:
Jillian and I hung out during the day. We ran to Target and Walmart, one of her favorite things to do! At night Jaime and Jason came over for dinner and we all celebrated Jaime's birthday. It was a lot of fun!We are looking at getting Jillian a special kind of belt that will go under her clothes to hold the extra tubing coming out of her tummy after surgery. We found a company that looks to have really nice ones at a good price and hundreds of fabric options. Jaime and I spent a little bit of time picking out what fabric we thought would look best. We also were picking out fabric for these little disks that you put around the tube that help soak up any drainage. She is going to have a styling GJ site :)

Tuesday:
The day started with a trip back to Children's but this one was planned. At this point we should just own a house there since we have been there three separate days in one week. This time it was to see the genetics department. We caught them up on what is going on with Jillian. She has been doing this weird thing lately where we can not get her attention and she looks blank. You can get up close to her and make faces and be a goof and she will not look at you. You can make loud noises (brent dropped a pan) or call her name and she does not move. It lasts for a few minutes at a time. They are concerned about possible absent seizures and are referring us to neurology. They also want us to check in with audiology to make sure her ears are still good. They said that I need to call central scheduling for both appointments and that neurology is backed up. They said she does not need to go see them again for a year unless things change. They said that normally someone with just a feeding issue they would dismiss but with her other things (she still does not roll over) they do not feel comfortable doing that.
After the appointment we stopped at the mall for lunch and then went over to Buy Buy Baby. We were looking around and noticed 2 of the next carseat I want for Jillian sitting in the clearance section. I am a big person on research when it comes to carseats and all baby products. It started when my like brother Howard was born. I wanted to buy just the right gift (I was in middle school) so I started researching. Well between the time of Howard and Jillian I still loved researching baby products. I am very picky in this area. Car seats for me are no different and I have spent a lot of time researching what one to buy when Jillian outgrows her's soon, so when I noticed 2 of the one I wanted in the clearance section I was really happy. I looked all over the boxes which where kinda beaten up and could not find a price. I then found an employee and asked them about the car seat price and they looked at me like I was crazy talking about car seats in the clearance section. They looked at them and then asked around to find out that they had just been set there hours before when someone was stocking shelves and no one put them away. Bummer! With the condition of the boxes I doubt they will sell them for full price, but they were not willing to give them to me at any discount for the messed up boxes that day. I then looked at the car seat mirrors, the reason for the trip and they were way overpriced so we left.
Next stop was Babies R Us where I knew they had a car seat mirror for a better price. Jillian has only been in Brent's car a few times but one of those was this weekend on the trip to the hospital and we noticed we did not have a mirror in there to see her in the back seat and that was a pain. I wanted a new mirror for my car that was lighted and we would put my plain mirror in Brent's car. When Jillian starts screaming it is so nice to be able to look back and see if she is screaming because she is a baby or if she is pulling on the tube and about to take it out. I walked all around the  store and was only finding a plain mirror or one that lit up if Jillian touched it, and that would not work because how am I going to convince a 6 month old who is screaming to turn on a light so I can make sure she is not pulling her tube out. I figured I would just get the plain one again. I stopped at a clearance rack on my way out and noticed that tucked behind everything was the lighted mirror that I wanted on clearance $10 cheaper then Buy Buy Baby had it! I grabbed it and checked out. When I went to pay for it another $4 came off plus Jillian had a gift card! I love a good bargain!
We then hit the road before Milwaukee traffic got too icky and came home. We had Tacos for dinner and we all hung out. Jillian took a 15ml bottle and puked a large portion back. She showed us how good she is getting at sitting and we had fun playing on the floor and reading books before bed.

Wednesday:
Jillian was up a few times during the night moaning and it continued into the morning. Eventually I just got both of us up. I got her dressed and gave her meds and then she fell back to sleep. I figured I would get some of the clothes cleaned out of my closet while she slept. I had to wake her eventually so we could go to work.
At night she was kind of fussy. She did not poop all day so I am not sure if that was the problem. She is all messed up again after missing Sunday's laxative. She also has buds for 2 more teeth. Im not sure what the deal was but she would be playing for a few minutes and then scream.  Brent was out with a friend but Dan was a huge help! He got her meds for me when she was screaming and got me a rag when she puked 1/2 of her 15ml bottle up. She did find it a fun game for a few minutes to be sitting and playing and lift her legs and fall  over. I was working on ordering something online and would grab her and lesson the fall. She thought this was so funny until one time I was not as quick. She was on a thick blanket on a rug so I knew she was fine, I think it just stunned her. Brent got home around 10 and she was wide awake. He took her for a little bit so I could get a couple of things done quick. We put her to bed sometime after 10:30 and she still fought us. We were up multiple times during the night again with her fussing. Not sure what this is all about... the mysteries of Jillian.

Thursday:
She slept and fussed off and on all morning. I gave her extra laxatives since she had not pooped in a few days and I figured it was making her belly hurt. She spent the morning playing on the floor naked because I figured when the poop came it would come with force. It finally came around noon and did not have as much force as I was expecting but it did smell like a skunk was loose in the house. Alumentum does some bad stuff to the air when it comes out. I spent part of the morning trying to make dr appointments. I got the audiologist appointment scheduled for July 9th. I tried to schedule the neurology appointment but she has to be referred to them first and genetics did not do a referral yet so I sent them a message letting them know we needed the referral. Jillian thought the hold music was funny while I bounced between all the people. She is so goofy sometimes like how she just fell asleep on a book while doing tummy time today.

Surgery has been set for my birthday, July 18th. We wish it was sooner but glad we dont have to wait too long. Day surgery is suppose to be calling me with the instructions for surgery prep. I guess birthdays are just the time for her to be in this year since she was in for Uncle Seth's, Aunt Jaime's and now me. PS Jillian, we can make other plans for ur birthday :)

Jillian's 5 month video

Here is the pictures from when Jillian was 5 month old. During this time she took her first trip to Indiana and spent no time in the hospital. We also had a 25th anniversary party for my in-laws and were able to spend time with Brent's grandparents. Jillian also said goodbye to her uncle Seth for the summer. It was a fun month!

Sunny days...

Jillian and I are enjoying a few days together.

Friday:
In the morning I got a call from Birth to 3 and they wanted to know if they could come out then. So while they drove from Elkhorn to Genoa City I cleaned the house in a mad dash, it was not too bad, however Brent always says I tend to go crazy cleaning when new people come over. I was impressed with my 20 minute clean. Our service coordinator arrived and she had a student teacher with her from the same program I was in at Whitewater. We went over the paperwork and I signed a ton of things and she said that we will be doing some assessments with Jillian but with her feeding challenges and a few other areas of slight delays that Jillian will qualify. I think I was a little in denial about her qualifying until they got there and the ironic thing is that with my degree I am qualified to have her service coordinator's job. I guess it is a little different when it is your child... They will be calling me next week to set up their assessments and some assessments with speech.
After they left we packed up and headed into Kenosha. We met my mom for lunch and then headed to get Jillian's picture taken. They had a little bit of a back up so we went to Target for a little bit and then went back. Jillian was a ham for pictures. She had such a big smile which made it hard to decide which ones to buy!
For dinner my dad joined us and we went to Charcoal Grill. We then dropped my mom and Jillian off at the house and dad and I went to Walmart.
Sleep was not my friend Friday night into Saturday. I hooked Jillian up at 11 and fell asleep around 11:30. The pump went off at 2 and I fell back to sleep around 2:30. Then I woke up at 3:15ish and HAD to pump right then. I got back to sleep around 3:50. At 4:30 her pump decided it thought it was done pumping. Not sure what it's deal was. I figured out how to get it going again and then went back to be around 4:45. At 6:00 her pump went off again to be filled. At 7:00 Jillian woke up. I was so sleepy by the morning!

Saturday:

We woke around 7. My dad make french toast for breakfast. Then my mom, Jillian and I took my car out to the dealership for a recall fix. While they were fixing it we went rummage saleing. After it was done we met Brent at Noodles and Company for lunch so he could get the van. Dan moved in today and they needed the van to finish moving his things. After lunch we went rummage saleing again and to a consignment shop. We went back to the house and I took a short nap while Jillian hung out with my mom and dad. Once I woke up we went to a graduation party for one of the neighbors. Then we went down by the lake to Bloomin Bands. Jillian liked seeing the lake. While we were down there mom and I took Jillian on a walk downtown and stopped into some shops. After we left downtown we went to my grandma's house to visit.
Once we got back to the house Jillian got a 15ml milk bottle. She took it down just fine and after struggling to keep it down for a while she puked a large amount back up.


Right now she is pushing her front teeth through the rest of the way and there are buds for two more teeth. She is a drool monster! Everything is for chewing right now, including passy.

Her mood and temperament has improved since taking less milk again. She is not refluxing nearly as much and is not having times of random screaming related to reflux. She has been babbling more and cooing because she feels better :)

She is sitting for several minutes at a time.She has not master yet sitting a playing with something but she is working hard at it. It is funny because once she get tired on sitting she just folds in-half. lol

She is having these weird blank times where she will not look at anyone in the face and does not look at any noises. It looks like she is looking at nothing. It is so weird. She always comes back to after a few minutes. Im not sure what is happening during these times and I am going to start tracking them to see if maybe it is just when she is really sleepy or see if there is something else going on.

She has a lot of mucus right now and had been sneezing and coughing a bit. I think it is a mix of allergies and the fact that we tried only spacing shots out one week this time. She always seams to be congested after she gets a shot.

Well time for sleep. She is out for the night. As I held her before swaddling her I thought about how I could just hold her all cuddled up like that forever. She is such a sweet girl and I love her so much. I love the smile she gets on her face when she is so happy. I love the look when she cuddles up with her bear or doll. I love how she looks all over when she hears Brent get home from work. I love how she makes other people smile. I love how much of a fighter she is and how strong she is. I just love her so much! I know it sounds cheesy, but it is so true!

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!

No catchy title here

Yesterday we went to see Jillian's GI at Childrens. There was some good in the appointment and some frustration.

Good:

• Jillian is up to 17lb. That is a normal weight for a baby her age which moves her out of the category of currently failing to thrive. To achieve this weight we cut out all mouth feedings for nutrition and had her on a "catch up" calorie diet to help her gain weight quickly. The diet worked!
• Jillian is going to be evaluated by Birth to 3 to see if she qualifies for any services. They are thinking she will qualify for speech under eating because her sucking is less coordinated then it was and water comes running back out of her mouth.  I am not sure if she is far enough behind right now to qualify but we will see.
• Jillian no longer needs to be on a catch up diet and is moving to a maintenance diet.  We will see her weight gain slow dramatically but it will go to what is typical for a child her age. She is moving from 27cal breast milk to 24cal milk which means she gets less formula. Hopefully with less formula she poops better. She will also be off of the pump from 4pm to 10pm. 
• They increased Jillian's laxative so she hopefully does not have to push so hard to poop. I just need to have the mail order pharmacy fax them for the scrip (hopefully that goes smoothly) 
• We are moving her pump rate up slowly for the next few days from 40 to 46.
• We see her GI doctor again in 2 weeks

Frustration

• We are trying milk again by mouth. I know to most people that would sound like a good thing however I am not convinced that it is. At 7pm each night she will get a bottle with up to an ounce of fortified breast milk. This concerns me for multiple reasons:

• She has been choking on her saliva from teething the past few days and that is no where near an ounce at a time.
• She has not been taking the water great so I'm not sure how she will do drinking that much.
• This brings back all of the night fears of choking, and not to sound totally selfish but I just started to be able to sleep without as much fear. 
• I feel that we are taking steps backwards right now in the bottle aspect. I know that introducing bottle right now feels like going backwards is strange but I'm not sure that we are at that point yet  to be introducing milk
• I fear for her choking on milk and it goes into her lungs, that is one of the reasons we pulled her off milk in the first place. 

• All tests have been postponed until after this trial! I get the logic of the trail, to keep going back to the most "natural" thing, but what is the most "natural" is not what is best for Jillian...
• If we do tests they are talking about doing them next at tube change in July. We would just be switching out NJ tubes at that point and not putting in a GJ. By the time be would get test results back and if we decided to go with a surgery that would probably put us at the start of the school year, which is not the ideal time for a teacher. I was hoping to move this all along faster this summer while I am working half days. I know it is not on my timing. I feel like I am being beaten over the head with that lesson right now. 
• After Jillian's appointment in two weeks her GI dr. goes on vacation for a while. I know it is something everyone needs, it is typically when  one of her doctors is away that Jillian ends up with a problem.  
• We are pretty sure this "trial" is going to fail. The nutritionist hinted that she thought it might too. So we are delaying that inevitable, and the inevitable is what I think is going to be best. 

Today:

• It is almost 11am. Jillian has taken about 9ml of water. She was offered around 13ml. 
• She started refluxing almost immediately after. 
• She has chocked twice
• We are running her pump at 42ml/hr
•  She is trying her first milk bottle since mid April around 7pm tonight

Prayer Requests

• That if the trail is going to fail it fails quickly. I don't want a slow two weeks of hard. I will call the doctor if this is not working and the choking is too much. Already with 9ml of water she is showing what it does to her body and the pain it causes. By not doing feedings in the mouth she is not in pain. This is why I see the tube as an amazing blessing. 
• That we can get tests scheduled quicker then mid July.
• That I keep my eyes pointed on HIM and remember that it is not all about my timing.
• For listening ears from the doctors and for me to articulate Jillian's needs efficiently.(I am struggling a little because I feel like maybe I did not speak up enough yesterday about this plan)
• That if she is going to continue to use the tube for a while that we are able to switch to a GJ sooner rather then later. 

Blessing:
Last night we had the chance to go out to dinner with a group of people that are some of the main pillars of our support team. They are over at our house frequently and lift us up in so many ways. We could never express to them how grateful we are to have them in our lives but it was nice to get to spend a little time with them and try. We went to Bucca di Beppo's in Milwaukee for dinner and then went to Kopp's for ice cream. It was a fun night and Jillian joined along for the ride. The only time she was really fussy was when they started singing their birthday song that the restaurant to another table. The look on Jillian's face was priceless because she had no idea what was going on and it scared her. I love that we have a little girl that is able to join with us wherever!

Waiting with daddy for the doctor

Some people look at me crazy when I say I am so grateful for the tube and all it has done.  Others look at it as a hindrance. I look at it as the solution God has given us right now for Jillian's eating struggles. I see it as an answer to prayer and I am grateful for it. Yes it can be stressful at times, but the blessings are grater.

tooth

Jillian got her first two tooth on Tuesday! Both came in at the same time. They are her bottom two fount teeth. On Saturday I noticed two buds under the gums and then nothing else until they were both out when I walk in to see her in her classroom.
She has been drooling a lot with the teeth. She has been crabby a few times the past few days and I have heard her gulping making me believe that she is refluxing the drool that is going into her tummy. Once she burps she is better. Poor girl has reflux even when she does not eat.
I am nervous about the appointment tomorrow. It could bring change which is always scary. We have been on the same schedule for the past month and have gotten kind of use to it. We are also talking about tests and other unknowns and that always makes me a little uneasy. Thankfully Brent is going with me tomorrow, however medical stuff is not his thing but he wants to be a part of her medical team even though this is not his cup on tea. For me medical issues are just a part of life. It comes with my family. Part of my anxiety with doctors comes with all of my own struggles. I am always so afraid I will not be heard and listened to. The nerves are affecting my health right now. I am so tired it is hard for me to function right now. Tonight we made are questions list. I am trying not to think about the appointment too much though so I don't work myself up. I am focusing on getting to see some people that think my little girl is great!
I will try to update tomorrow, however we are going to spend some family time tomorrow so it might be saturday morning before I get an update up :)

Prayer

At church right now we are going through a series on prayer. It has really challenged me and has been something I really needed! I feel like prayer in my life is something I am getting kinda right or really messing up and I have felt like I have been in a rut for awhile.
Some people have been asking what they can pray for us. Being in a family of believers, it is so encouraging when people authentically pray for you. Here are our prayer requests currently:

1. I know this is a little strange, but I am praying for abnormal test results. This is my prayer because they might point us to a reason. Strangely, I have become more and more ok with not knowing the exact "why" of Jillian's eating differences however I think there might come a time when knowing what is going on could be very helpful. I also see myself getting frustrated at some point with not know why but I am very grateful for the patience He has given me to be ok with not knowing the "why" right now and trusting in Him.

2. I pray that I am able to have my eye's focused on Him and being ok with not having all of the answers. Sometimes that is actually the best place to be.

3. To be able to go ahead with the GJ surgery if it is what is in His plan. It would make some things easier to have the tube placed directly into her stomach. One of the things that it would hopefully help with is the ear and sinus infections. We need some test results to come back a certain way for this to happen and we are praying for it all to line up. I know it is crazy for a parent to be praying for surgery but that is what we currently think is best.

4. To be able to use this opportunity of Jillian's health to point people back to Him. I was thinking today how someday maybe Jillian can educate others about feeding differences and help to make the world more accepting.

5. For wisdom for the doctors and for us.

6. For reassurance we are doing the right thing. Parenting is one giant balancing act and this is no different. Mix health stuff with little sleep and you have a mamma that doubts herself frequently. I want to do what is best for her. I want all of my motives to always be right. I don't cut myself a lot of slack sometimes and that leads to frustration.

7. For patience with others. Sometimes in wanting what is best for her we forget about others and how to best educate others. Sometimes I am not a patient with others in all of this as I should be. I have to remember that the people around me are learning too. 

8. Praise for the amazing people that God has surrounded us with. We are so grateful for the kind words and the encouragement from others.I am grateful for the feeding tube awareness group that has provided a place for us to ask questions and get advice.

9. For pooping to be less painful for her. It took her 9 hours today to push her poop out. There was crying and unhappiness in that time for her and I hope that becomes easier for her.

10. For guidance in a lot of big decisions we have before us.

We currently are not begging for God to take the tube away. I know that might sound really strange. We see the tube as a blessing. We are so grateful that God has placed us in an area with the resources to help Jillian. If we were in a different location Jillian might not still be with us. We are so grateful for all the amazing things the tube has done for her. She is growing! She is developing! We feel that the tube is what is best for her right now. At some point God might have a different plan, but for right now we are so grateful His plan has included the tube to keep her with us.

Thank you for your prayers!

Getting back to normal

We are working on getting back to normal after working in all our free time on our house for so many weeks.

Here a feww updates on some things going on right now:

Septic: On Tuesday we had our septic pumped out. The guy said it needed work. We had someone out that afternoon to work on it. He said there is a pipe that is a little off but it is not a big deal and they blasted the system and said it should be fine now. They said we need to put baking yeast in the system every 6 months. For two city kids who have never dealt with septic before this is a little beyond us. We said if we move again someday it will be to somewhere with city water...

Brent: Brent text me yesterday at 5pm with a picture of he orange snot coming out of his nose. Not something that should be coming out of anyone. He went to the walk-in this morning and is on antibiotics. I think he and Jillian are on the same one... now if i can only get him to take the entire 10 day dose instead of just a few days...

Jillian poop: Jilly has only pooped a couple times all week. It is still seaming to be a lot of work for her. I did get her more laxatives. Sadly when I picked it up our pharmacist was not on (it was someone I had never seen there before and the person looked super confused) so I was not able to bring up my frustration with what happened the last time I got it filled.

Tape: Medical tape makes me want to go AAAAHHHH frequently! Jillian is now more active with her hands and manages to take some of her tape off everyday just by being a baby. We use 2 small strips on her face and 2 behind hit er ear. We have tried many different brands of tape and different sized pieces and shapes, and while some stay better then others (1 kind I tried this morning did not last a half hour) most cant last a day. She did get all of her tape ripped off this week. I was packing her up to leave daycare and I turned to do something and a child tripped over her line (that I thought was tucked behind) and took all the tape off in one quick motion and pulled on the bridle. I had not heard her scream like that before. She whimpered for an hour. I felt so bad for her. If she did not have the bridle though we would have been going to Children's because it would have fallen out. I stopped at Walgreens this afternoon to try to find a different tape and found one that says it is for hold IVs in. So far it is doing so much better then the rest! I am hoping for a winner!

Jillian's tummy: Jillian sees GI on the 7th and we are thinking that it is going to be a big appointment. My prayer this week has been "God show me what we need to do and show us if what we are doing is the right thing." It is a constant balancing act of are we doing too much, too little or just what she needs. I want to do the right thing for her. I feel that God has showed me in the past 24hr that we are doing the right thing for our little girl. Jillian has started liking her new bottle sometimes and has drank an entire 10ml from them a few times. She still refuses at times and can be uncoordinated but it is something! Last night and this morning a large amount of that water came back. She gets 10ml of water in her bottles. 1 Tablespoon=14.78ml of water. So she is getting about 2/3 of a tablespoon of water. I would estimate between 1/2 and 1 teaspoon came back out it this morning. 

Visitors:  Jillian has been able to see 4 out of her 5 living great grandparents this week and she should see the other one tomorrow at church. She is so fortune to be able to see them and spend time with them. Brent's grandparent's are currently visiting from FL. 

Well it is time for me to try to get a little sleep. I have a cough right now and so does Jilly so we were both up coughing last night.