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!