Whirl wind!

I woke up Thursday morning to Brent making me chocolate chip pancakes that were shaped like Mickey!They where so yummy. We talked to a few people on the phone and finished packing up all of our stuff.
We took off for the zoo around 9. We stopped on the way to get gas and sunscreen (I forgot to pack that... ops!) As we were driving I kept getting a whiff of poop...
We got to the zoo around 10:30. We took Jillian out of her carseat to put her in the stroller and she had poop to her hair. After cleaning her up we sunscreened her up and went into the zoo. First we visited the penguins and then we went to the ape house. Jillian liked watching the monkeys jump around! Next we walked down to the animal hospital and looked around and showed Jillian that the animals do some crazy things too! We then took off to the reptile house. She loved the fish and snakes. She thought they where funny!

We went by the giraffes and Jillian took a nap while we ate our lunch of lunchables! We woke Jillian up and took her by the giraffes. They were all the way in the back of their cage and Jillian was not able to focus on them. We went to see the elephants and the big cats. She liked the jaguars because they were jumping all around. They liked looking at her too. We went by the elephants, had a fresh squeezed lemonade and then back by the giraffe and made her a mold-a-giraffe. We went over to the kangaroos and she was getting sleepy again. We stopped in the gift shop (that was too overpriced for me!) and then headed back to the car.
We stopped at Starbucks for my free birthday drink and Best Buy for a new phone charger. We then headed to the hospital. Our parking spot rated a 7 out of 10, lol! We checked in at the skywalk and they told us to go to admitting. They got us checked in and gave Jillian a handmade blanket! We then headed up to 4th floor day surgery.

They told us to have a seat and then her doctor came over all scrubbed up. She said she was glad she found us because a hospital policy changed and she might not be able to do the surgery but she would let us know. We were so confused about what was happening. Then the receptionist took us back to a room.
The doctor came in and said that in the past week the policy changed and they no longer place tubes in the surgical department but now in interventional radiology.  She said that if Jillian was in desperate need for the surgery they could do it right away but that Jillian fell into the gray zone. She said she was really sorry for the inconvenience and that she would go and work on getting us an appointment as soon as she could for IR to do the procedure. She came back in and said that they could not get us in for Friday and the soonest they could do was Monday so they where going to have to send us home. She said to wait there and she would check to see if they could get us meal tickets for our inconvenience. The doctor then came in again and asked when Jillian had eaten last (1:30 like they told us) and she said she decided that she was going to go ahead with the surgery! It was then a race to get all of the vitals and check in stuff done.
They then took us down to the 3rd floor general surgery because day surgery closes at 5. We went into a holding room and each of the doctors came in and talked to us. They gave her Versed and she became like a newborn again. It was kinda funny. Then the anesthesiologist  came in and carried her into the room. It is so hard watching your baby go through a set a double doors that you are not able to go into. We then headed into the waiting room.

After a while the GI doctor came in and asked to speak to us in a separate room. She that that the biopsy went fine and they got a lot of samples. She said the Jillian has a Hiatal Hernia. She said they went to place the tube but they could not find a good place because of her stomach and the surgeon did not feel it was safe to continue surgery so they stopped. She said we were being admitted and we would figure out what to do next since Jillian had no tube at all. We went back to the waiting room again.
A nurse came to get us. She said Jillian wanted us NOW and was screaming. We walked into the recovery room (Jillian was the only one) and the gave Jillian to me and she curled up on my shoulder and went to sleep. The anesthesiologist told us that she did great but she can pack a punch (I have been known to get violent going in and coming out of anesthetic). The surgeon then came by and said that he could not get a good enough view to continue, and that he felt like if he cut then it would not have been safe and he wanted to do the best thing for Jillian and did not want to put her in danger. We thanked him for looking out for her. We then talked about our options.  We can do the surgery a different way where surgeons place the tube with multiple incisions or there is the option of altering the anatomy of her stomach. We currently feel like we do not know enough about what is going on with Jillian to alter her in a way that cannot be undone.

They then got us a room on the 11th floor in the exact same room as last time. It was after 7pm at this point and we got some dinner. Jillian was going between sleepy and fussy because they pumped a lot of gas into her and it was coming out. We put Jillian to bed around 10 and by 11 she was up screaming again. The night was long with little sleep because she was up crying a lot.
This morning we have seen a few doctors. While we are here and she is tube and food free we are going to do the PH probe study. It is a 24hr long test and will tell us how much reflux she is having. To do this test they have taken her off all of her acid reflux meds. This was hard for her last night because she LOVES her pink medicine and I think she is more upset about no pink meds then not eating. The probe is to be place sometime today and she will have to be on IV fluid during that time.
Surgery is also going to come in and talk to us today and come up with a plan. I will update once we fingure out what is going on there.
We are also working on figuring out if Jillian currently has a ear infection. She has so much ear wax they cant see her ear drum so they are putting drops in to "eat" the wax so we can figure out what is going on. She is pulling at her ear a lot today.
She is still fussy today. She did spend a 1/2hr today playing with the new toy we got her for the hospital. She is very sleepy from last night and she still has gas.

We will see what today brings!

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

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.

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!

The Doctor, The weekend, the bath

Sorry I'm a little behind on here... it has been a busy few days!

Thursday:
Thursday morning stated out with puke all over the kitchen floor. She had her morning bottle upstairs with Brent and then I brought her downstairs to put her in her carseat and she puked everywhere. We cleaned it up and off she went to daycare. At night I had a bad headache that made me kind of useless. Brent gave her a bath and surprisingly she did not cry. She did not look happy but she did not cry :)

Friday:
In the morning we went to work until 11:30 and then sped off to Children's for her 12:45 GI appointment. It started off with the first person taking her weight. She was up to 13lb 12oz! The 20th percentile!!! She is also 24.06inches long. Then the dietician came in.She said that she did not have a lot to do this time because Jillian was just inpatient and she had a nutrition work up done then. She said that next month she would do another nutrition assessment. She said that the main reason she came in was to see Jillian. She has a student with and she said she told her student that she was lucky because she was going to meet the cutest baby. Jillian followed suit and showed them the cutest baby as she flirted with them and gave such big smiles. The nurse then came in and talked to us for a minute and then the doctor came in. She said that she was happy with Jillian's weight gain. We talked about the water and the puking/choking with it. She said to move down to 10ml of water each time. She brought up that again that she is not aspirating while drinking, which I'm grateful for but it is so frustrating because that test did not tell anyone that she is not aspirating on her reflux but the notes from the test seam to indicate there is no aspiration ever and I have not been convinced of that yet because no one has watched that yet. The doctor then said that we are going to spend the next month putting weight on her and next month we will talk about more tests. She indicated maybe scheduling the PH test next time and the nurse referenced maybe doing an endoscopy at the same time as the PH test. The doctor also referenced the possibility of surgeries.  One they referenced was a Nissen Fundoplication (more info about that http://www.feedingtubeawareness.com/Nissen-Fundoplication.html). They said they will determine based on test results on that but if they need to do surgery they would like her to weigh a little bit more and that is why we are waiting a month. The doctor also said that she would like Jillian to be off of the tube a little bit during the day and the they would give us a new schedule. The doctor then left and the nurse came in and shortly after nutrition came in again. They asked why we switched back to 24cal milk and I said I did not know and she said that we are going back to 27cal. To have Jillian off for part of the day to be able to get her enough calories we would need to be giving her a large fluid intake that was not necessary. Her new schedule is running 22hours a day at 35ml. She is off of her tube from 6 to 8pm each night. During this time we are to give her a bottle to see if she keeps it down better when she is not on the pump. After we talked about nutrition we talked about random things like buying clothes and such. I then asked if they had a good way of keeping the bridle clean. They said they would go find the person in-charge of bridle and then once we talked to her we could go. The bridle lady was so excited to see Jillian. She told us that we could use Vaseline under the bridle and tube so they dont irritate her face. She also showed me a way that might work to clean it. We then packed up our things that made our next appointment for June. That feels like such a long time from now, lol.
Jillian and I then made a quick stop to exchange something at the mall and then headed to Kenosha to see my parents. Brent and some friends went to go see Iron Man in Milwaukee so Jillian and I went and hung out with my parents and went to Red Lobster and Babies R Us. We had our first experence at dinner with someone stairing at her for awkward amounts of time. I am find with people looking and asking questions but awkwardly looking at her most of the meal is a little frustrating.

Saturday:
On Saturday we worked! We are trying to get our house ready for my in-law's anniversary party and there is a lot to do in a little amount of time. Luckily Dan, Seth, my parents and Brian and Lauren came out and helped us out. I'm so thankful to all of them for giving of their time and energy! We would not get it done without them! For dinner we headed into Kenosha and had pizza and hung out.

Sunday:
This morning started off with Jillian's 10ml of water and meds. She only took about 5ml of it. She then proceeded  to puke it 4 times over the next 2 hours. She also pooped when I was getting her dressed and she had bloody mucus in her poop. There was not a ton there but enough for me to notice. I figured I would watch it. I then dressed Jillian in the dress she was to wear for Easter (but was too big for her).
 Our church does a baby dedications for infants and today we dedicated Jillian to be raised up in the Lord. It was a nice service and a lot of our family joined us for the event!  After church we all went out to HuHot for lunch and Jillian slept most of the time (just what she needed after the excitement). We then stopped at the Dollar Store and Kwick Trip and headed to my parents to pack up and head out.
On our way home we went to a benefit for my second cousin. He has CF and needs a double lung transplant. They are currently raising money for the operation and had a great benefit today for him. Jillian and I showed our support with our I <3 a tubby shirts today. It was also nice to catch up with the family. While we were there we took Jillian's temp since she was feeling warm and not acting like herself. Her temp came back fine.
Once we got home Jillian and daddy had some cuddle time. She was fussy but she got her 2 hours off of the pump. Brent gave her a bottle of water and then handed her to me. She then proceeded to puke and poop at the same time giving back most of the water she just drank. She has made the noise like she was going to puke many times today but there has been nothing in the tummy so nothing has come up. Brent then came back in the room and took her to change her diaper while I cleaned up from the puke. She had pooped blood again. I called her pediatrician's office and they paged the oncall dr (who she has never seen). He called back about 25min later and asked if she was eating normal (yea, she has no choice) and said to call her dr in the morning. So now we wait til morning. You play a constant balancing act being a mom of is this something big or do I wait it out and you are always trying to figure out if the choice you made was the correct one. We will see how the night goes. If she keeps pooping blood or puking or becomes inconsolable we might need to head to Children's. Not a trip I want to make, or a decision that we take lightly of going up there but if it is what we need to do then we will.
So now it is time for kind of bed... the kind of night sleep you get when you are worrying about your kid.

The weekend

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

sleepy by and goodnight...

The sleepiness is hitting right now. We did not sleep much last night so I am really hoping for a few hours tonight. This afternoon my parents, Seth and Dan came. Once they arrived my mom and I went down to Cafe West to buy some parent meal tickets for while we are here and my mom and I sat down and talked for a bit. When we leave the hospital our lives will be different than from how we came and there will be some adjusting that we need to figure out.
Once my mom and I got back to the room the boys left to play disk golf for Seth's birthday. Mom and I spent part of our time looking up backpacks for the pump and the rest of the time playing with Jillian. She spent a lot of time sleeping today but when she was awake she was happy. She loved playing with her O ball and links however she kept getting them caught on the bridal. Around 3pm we gave her 15ml of water. She played with the bottle but she took it all and kept it down. Around 3:30 her pump ran out of food after I called them to let them know she was getting low. After about 15 min a nurse came in with more food we were able to get her started again. The boys came back around dinner time and Seth wanted sushi for dinner so we found one in the area that does take out. My mom and I went and picked it up. While we were gone Jillian was playing with grandpa and laughed for the first time. I'm sad I missed it but Brent took video for me. Hopefully she will laugh again for us tomorrow because we have not gotten her to do it again since. While mom and I were out we stopped at Walgreen's to buy some soda. While we were there we decided Seth needed birthday dessert and we bought him the Walgreen's brand of cupcakes. We headed back to the hospital and we had a feast. Jillian slept through it all but she did get to join us in eating... just in her own way. Hospital visiting hours are over at 8pm for anyone who is not parents or grandparents so a little after 8 Dan headed out. At 8:10 we decided to give her a little more water. She had a very small choke and spit up some of it around 8:40. Around 8:30 Seth started to not feel well and they decided to head home. Around 9 they came in with her meds (since the nurse shift change at 3:30pm I have felt like things have gone a lot smoother and things have been done on time!). Around 9:20 we swaddled her and put her in her bouncer that my parents brought up. I'm hoping they let her sleep the night in the bouncer since last night I kept having to get up and readjust her in the bed. Jillian only sleeps in a bed in the hospital and this time she has a large crib so she slides around in it a lot and kept ending up sideways at the end of the bed so she was no longer at an incline. Hopefully she sleeps better too in the bouncer since it is more like her rock-n-play.
Well I think it is time for me to get some sleep. Brent is snoring on the couch and Jillian is putting up her last fight before she finally goes to sleep.