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.