Health update May 21st

Well we have been doing this NJ tube thing for a little over a month month now. Before the NJ she was on an NG for 6 weeks. So Jillian has been tube fed for 10 1/2 weeks now. For us it is feeling kind of normal. I was thinking the other day that it will almost be weird for us to have another child some day and for them to (hopefully) eat like a normal 5 month old. But that being said, even though the 2am food changes are hard I find that little tube to be such a blessing. At the rate she was loosing I could not imagine where we would be without its help, and to be completely honest if I lived somewhere other then here, I don't know that I would have a little girl to curl up on my lap. That is a hard thing to grasp sometimes. So no my baby does not eat like a normal baby but for her that tube is the best thing for her so I have come to have a form of respect for it. In fact if someone told me today that they where shutting the pump off and taking the tube out at this moment, I would fight them because I know we would go backwards (even though I doubt myself sometimes about making all the "right" choices).

Before I give Jillian's current numbers for things here is some math conversions:
1/2 oz= 15ml
1oz= 30ml
30ml/hr means that she is getting 1oz in an hour

 So here is an update of the different health areas of Jillian and how she is doing right now:

Nutrition:
She gets 38ml of 27 cal breast milk every hour. (Brest milk is fortified with Alimentum)
She is on the pump for 22 hours a day.
She gets 836ml of milk a day. That is 27.86oz.
Her pump is increased by 1ml/hr every week. So next week she will be running at a rate of 39ml/hr with a total of 936ml per day

Water:
Jillian is offered 10ml of water 3 times a day (30ml total)
She finishes one of the 10ml bottles about once a day (sometimes less, but rarely does she every finish more then 1 bottle a day)
The other bottles during the day she either completely refuses or takes somewhere between 1-5ml. Most days she gets somewhere between 10-15ml.
If she does take a bottle well it is normally one of the bottles that she gets that is accompanied by her anti-acid meds. We give her some water first and then give her the meds (that taste like cherry) and then get her to take the rest of the water. This method only works for about one of the two times a day she is given meds/water like this.
Her drinking out of a bottle has become a lot less coordinated. She use to eat beautifully 45ml at a time. Now she starts off a little uncoordinated, becomes a little coordinated sometimes and takes water or loses all coordination and does not get much in. Sometimes she will become a little coordinated and then lose all coordination. Water frequently flows back out her mouth while she drinks.
She does lick at the syringe that she gets her meds from but she does not have to suck them out and it is a different shape then a bottle nipple and a different texture.
I am not sure if she likes the taste of the water. I have  tried it room temp and cold that that does not seam to matter if she takes it or not. When she took milk by mouth it was room temp.
She is given water when she wakes up (with her med), around 7pm (when her pump has been off for an hour), and at bed time with her med

Reflux:
The only thing Jillian has to reflux is the little water she drinks. She does still choke on the water coming back up some days. 10ml is not much to be going in so it does not come back out like it use to.  She does still cry sometimes after taking water and has a hard time burping after drinking sometimes.

Poop:
Jillian is currently on laxatives everyday. She is currently pooping about 1 time a day and it leaks out of her diaper most days. The past 2 days she has had really bad gas again which she normally gets when there is poop "stuck" in there so I am waiting for an avalanche. She has been on laxatives daily since May 6th and we have yet to have a day that we are drowning in poop and she has not pooped more then 2 times in a day during this time period. Jillian went on the laxatives on the 6th because she was pooping blood and then went a few days without pooping.
Sometimes when Jillian poops she is obviously in pain before she poops and sometimes it is a lot work for her to poop. Sometimes the poop is looser and sometimes it is thick.

Pee:
This area seams to be working good! She pees multiple times a day. She hates a wet diaper though :)

Sleep:
Jillian sleeps from somewhere between 8-9pm to 6am. (She is oblivious to the 10pm and 2am food changes)
She sleeps in a Rock-N-Play
She sleeps swaddled so she can not get her tube
She naps off and on during the day when she pleases

Eyes/nose:
I believe Jillian is currently suffering from allergies. Her eyes are puffy and goopy. She is sneezing off and on and has a cough that can last for minutes at a time. She has been pulling at her one ear a lot and when she pulls at her ear she rips off her tape pulling on her bridle. She is also rubbing her eyes a lot and has cut around her eye twice now (baby finger nails are so hard to manage). Drinking water makes her cough worse. 

Developmentally:
Jillian has figured out how to get her passy and toys in her mouth most of the time when she wants to. She is not perfect at this yet, but working hard. She loves he passy!
She has started reaching for things
She lifts her head when she is on her belly
She will laugh sometimes (not very often, only happened a handful of times)
She likes to babble sometimes. She will go days at a time without babbling and then start back up again.
She loves toys that are part hard and part soft
She is not a fan of toys that are all hard because they are harder for her to shove in her face.
She loves blankets and likes to "yell" at them before she smashes them into her face.
She does not roll over from back to tummy or tummy to back.
She does kick her legs while she is on her belly and that moves her a little.
She will look at you sometimes when she calls her name and looks at noises sometimes.
She is happy when she is not in pain :)

So that is what is up with Jillian right now! Our next big dr. apt is June 7th.

To Indiana We go!

Wednesday:

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

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

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

Thursday:

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

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

Friday:

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

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

Saturday:

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

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

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

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

Sunday:

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

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

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

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

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

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

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

4am... We are not friends!

Friday:

Hang on! Dad's driving :)

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

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

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

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

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

Waiting for my shot

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

Blah!

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

"sitting" in daddy's chair

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

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

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

Poop and Clothes!

What a day!

I woke up a few times last night to Jillian moaning but she never woke up with the moans. I got her up this morning and headed to work. It worked out that some kiddos where not going to be there so I was not needed at work today so I could spend it trying to figure out Jillian's bloody poop. I stopped at the bank on the way out of Elkorn. I decided that her since ped's office opened at 8 and it was currently 7:45 it did not really make sense for me to drive all the way home (in the opposite direction) so I stopped at Target in Lake Geneva to pick something up and called the ped's office from there. They said that Jillian's ped was not in but a different doctor was and a nurse would call me back with answers. I then headed home with Jillian since they did not want to see us right away.
I hung out at home for awhile and noticed 2 hours had passed and I did not have a call from them. I turned my phone off and back on to find that the nurse had left me a voice mail at 8:17! My phone is going to drive me crazy right now. It selectively rings, sometimes says when you have a voice mail, and is having trouble connecting to WiFi. I then called them back and answered the nurse's questions. She said she would talk to the dr and call me back. She called back a little later and asked a few more questions and said the dr would like to see her. They said they had an 11:30 open and it was currently 10:50 and it is anywhere from a 35 to 45 minute drive to get to their office. I put Jillian in the car quickly and drove to the dr office. They weighed her and said she was 14lb, however last week when I was there the scale was quit off so I'm not sure if that is a true weight or not. The nurse asked us a few questions and then the dr came in. He asked a bunch more questions and then looked at her butt. He said it did not look like she had any open cuts or irritation where the poop comes out and that her butt looks good. He then looked her over and said her ears looked a lot better (he was the one who diagnosed her ear infection) and just needed to clean some gook out of her one ear. He said that based on what I told him about the poop and what she looked like that he did not think it could be from the antibiotics that she finished today or from a cut on her butt. This left us wondering where it is coming from. He then decided to call GI to see what they had to say. He said that he would call us back with what GI had to say and that we might need to do some tests based on what they said.

 I decided that if I was going to need to go back to their office shortly that I would just hang out in the area instead of driving home. I went through the Wendy's drive through and then headed to Kohl's so spend the Kohl's cash mom and I racked up getting me summer clothes. I went it and found a belt and shelves that I need and I still have some money left to spend. I figured I would look for summer clothes for Jilliebean. I found the BEST tubie clothes today!!! Kohl's sells onesies that have snaps all the way up the front! That means that we dont have to pause her pump to dress her or undress her (or change a blow out!). I am not sure I have been this excited for a while about clothing! (ok, well I was excited to fit into a size 6 pair of jeans this weekend instead of the 14 I was in before!). I got Jillian 2 onesies like this and one one-piece outfit. The little things that make you smile! I was not hearing back from the dr and Jillian was getting crabby so I decided I would head home and make the drive back if I needed to.

Since we got home Jillian has been super clingy and will only last not being held for 5 minutes at a time. She will be all smiley and then start screaming and then sleep. She throws herself in pain and then moans. I'm not sure what to do.
By 4:45 I had not herd back from the doctor so I called them. The doctor said that he had called GI again and talked to a nurse who said she had not herd back from the GI doctor yet. He said that he thought that is might be her straining to poop. I said I was not sure and he said we would see how the next 24 hours went and see what GI has to say.
Tonight has been lots of cuddles. We gave her the 10ml of water around 7:30 and she choked a little on the reflux. Currently she is sleeping on her daddy's chest. 
We were also very blessed tonight by the gift of dinner. A dear friend brought us over some healthy food to eat and cuddled with our sweet baby so we could eat. We are blessed! We have been so thankful for all of the people who have come around us and prayed with us and for us. THANK YOU!

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.

Its MAY!

Jillian is LOVING the warm weather. Every time we go outside she smiles so big. I need to find her some shorts, because most of what she owns in her current size is pants because no one thought she would be this size in the summer. She has one pair in her current size and 2 in the next size up, and for my sweaty girl that wont be enough. She has always been such a warm child... she gets that from her daddy, not me.
This morning on the way to work Jillian had a large choking episode. She had only had her acid reflux so far today. She choked for quite a while. She has had a few smaller choking episodes today too. We tired 1 bottle with her at dinner and at first she was playing with it for me so Brent tried but then she started refluxing and choking so we stopped it.  
Med supply delivered meds to my work today. Ordering them online did not work so I called them yesterday. They brought me a months supply today. I was so excited to get 30 days instead of 15 so we dont have to work that out as often. 
Jillian had a doctor's appointment today with her pediatrician. She was at 13lb 7.5oz. She is up to the 20th percentile!!! This weight also means that either the other doctor's scale was off or she gained 6oz in 2 days and then only 1.5oz in 5...hmmm. The doctor said her ear looks fine we just need to finish out the coarse of antibiotics. She said that overall Jillian looks a lot healthier then before and I agreed with her. Since getting the NJ she is a much happier child and I'm so grateful! The doctor also apologized for not having more answers for me and I told her that I was not expecting a ton from her (not in a bad way, she is doing her job of taking care of the everyday things and leaving the rest to specialists). She is a great doctor and really watches out for Jillian but she is right in what she said today, that currently we have more questions then answers. As sad as this is my confidence in the medical field is not all that high some days. I was sick for many months when I was younger and I learned that they are not the end all be all. To a degree I feel sad for people who put all of their faith in the medical field because when they come up short they are crushed. Do I hope for answers? yes. Am I so thankful for all of the hard work all of our doctors are doing and will continue to do? yes. But I get that life is a process and so is figuring things out sometimes. Jillian is our little puzzle, but I stump doctors myself sometimes so she is like her mommy.
She is still pooping a lot and it is back to newborn like poop. She pooped 3 times today and 1 was a blow out. We will see what GI has to say about it on Friday. 
Her doctor works in two different locations and I was reminded today why the one drives me crazy. Every time I have worked with them it has been a pain and I have been frustrated. Jillian needs to go in for shots every other week and one office is 5 minutes from our house and the other is 30minutes. To get a shot she only needs to see a nurse. I am off on Tuesdays so it is best for her to get a shot on Tuesday so I can spend the day with her. Until now I have always driven to the office 30 minutes away but I was hoping to not have to. I went to set up her next shot appointment today and they told me at that location I can only bring her for shots when the doctor is in, which is Wednesday afternoons. I dont want to take off of work to get her a shot when I have the day before off. I was informed that I could call the other location and see what they would do. I was annoyed. I know the other location will set up a Tuesday appointment but it is the time and gas to drive all that way for one shot. I also needed to set up Jillian's 6 month dr appointment and they acted like I was a huge inconvenience for asking for a morning appointment because I am working in the afternoons this summer. By the time I was done setting up the appointment I just wanted out of there. I love Jillian's doctor but the office staff can be a lot to handle some days. I guess from now on I will just stick with the other office even though it is farther away.
After the doctor Jillian and I went to Target to look for more lids for her bottles. Since we are using her bottles as storage containers right now more then something to feed her with it would be handy to have more of the lids for them. Sadly  our Target does not carry the lids anymore so my mom is going to look in Kenosha for me. As we were checking out of Target the girl ringing us up looked at Jillian in the stroller and panicked that there was something up Jillian's nose. She thought Jillian put it up there. I explained to her that it was a feeding tube and she looked at me like I was crazy and why would I do that to my child. She then had a hard time finishing checking us out. I felt bad for her that she seamed so uncomfortable with it.
Once Brent got home from work we decided that it was so nice we wanted to spend time outside. We went to Lake Geneva and had dinner outside and then walked by the lake. It was so nice out and Jillian loved it. She was so full of smiles! I think we will be spending a lot of time outside this summer.
Once we got home Jillian fell asleep quickly. All of the fresh air must have worn her out!