Fortified no more!

Carly (her awesome dietitian!) called back today after we had her weight checked at the GI clinic yesterday after her nuro apt. She was 19lb 3oz without clothes on their scale (she has been weighed on that one a lot, we count it as her true weight).
Carly called today to say we don't have to fortify anymore! No more mixing milk! This is helpful since I am down to pumping 3/4 of her daily needs and the rest we are taking out of the freezer. We do have to remember to squeeze the bag every few hours so the breast milk does not separate.

She has not been her happy self today. I'm not sure what it up :( She woke up crying and has been fussy ever since. She has been throwing her head back a lot today :(

I have also spent most of the day figuring out insurance and medical bill stuff. Numbers is not my thing. There is a reason I teach little kids. I think I have some of it sorted out! Ahh that takes so much time and makes little sense sometimes!

I also spent a while trying to get her tube to stand right today. There was a lot of drainage that came out of it in the past 24 hours. More then she has had so far. Weird. I'll watch it.

I also read some info that came to me from the Oley Foundation. They help people with IV and feeding tubes for nutrition. They are a great resource! I am so grateful for Oley and Feeding Tube Awareness for everything they do for families like us!

Hospital stay #5

Wednesday started early like any morning at the hospital. As the nurse said the "scouts" (med students) where in early (6:30). Around 7 was rounds. The nurse had told me the night before that round where different on this floor. They are a lot quicker and about the facts not about digging in deep. Rounds lasted about 5 minutes (can last up to a half hour on other floors).
The nurse came in and said that we would be be able to do the EEG in the room YEAH! A tech came in around 9:45 to do the test. By this time Jillian was sleepy because we made her stay awake after rounds in case they said we could do the EEG. We kinda broke the rules for this because Jillian should have been woken up at 5 but because we did not know if it was happening or not at that time we did not want to bug her. She was barely awake by the time he came in anyhow and that is what they wanted. She was not a big fan on getting all the wires attached to her head but she did not scream. The tech finished attaching them and then he left the room for the test to take place. We left Jillian in her crib for the test and she fell asleep very quickly. Brent worked on work and I blogged. The tech came back in after 35min and said he needed to wake her up to see how her brain acts waking up. She woke up calmly and started talking. He took all the stuff off her head and left.
We hung out and I went down and got Brent and I lunch from the cafeteria. Around 1 her nurse came in and said we should give her a sponge bath before surgery. She started bathing her and the head nurse came in and said surgery had just called and said they were sending someone up to get Jillian. It was almost 2 hours before we were expecting to go down. We got her bath finished up and by that point someone from surgery was there.

With EEG probes on

We walked down to 3rd floor general surgery and were put in the same holding room as the week before. Doctors and nurses came in to talk with us. This time they did not use Versed to make her loopy first. Around 2:30 they came in and got her. It was hard to not cry. Someone came over and got Brent and I and walked us to the waiting room. After about 40 min the surgeon came out and told us his part went great and that radiology was in at that time converting it to a GJ. The second part of waiting felt like forever. Around 4:30 they came in and said one person could go back. I went back and Jillian was sleeping. They said that she had fussed a little but that she went right back to sleep. It was nothing like her coming out of the first surgery. After a few minutes they said it was time for her to go back to her room.
We went back up. She slept the whole way. We got up to her room and they checked her out again. She was so out!  Someone from x-ray came up to do an x-ray to make sure the tube was in the right place. He said he needed to do a chest x-ray. I knew they were looking for farther down but... He put the x-ray thing under the mattress, this is when the momma bear claws almost came out. He was not gentle AT ALL!  She was just out of surgery and he was messing with my baby. She gave him a stink eye and went back to sleep. He went and asked the staff if the pic was what they wanted and low and behold nope they wanted one that showed lower... where the tube was. He redid it and left.
My mom and I went and picked up dinner for us and when we got back Dan was there too so the 4 of us had dinner while Jillian slept. She wanted pain meds around 10:30 and then we went to bed. They kept doing diaper changes during the night to make sure that she was hydrated and they made her upset. She is not use to diaper changes during the night and bending to get the diaper under I am sure hurt! Around 3am she needed more pain meds.

In Surgery holding

Around 6:45am people started coming in and asking how the night did. At rounds we were visited by the on call surgeon. He said she looked great and he might send us home that night. Around 8 we got milk started again at 15ml per hour. Around noon we bumped it up to 30ml per hour and caped her IV. She was taking it great and only wanting pain meds every 4-4.5 hours. We tried to pick her up around noon but it hurt her too much to be held. She finally let me hold her around 3.
In the afternoon we were visited her GI dr. She looked at her and said she was doing great and that she was happy. At the same time the discharge person came. She was in charge of making sure we got the correct supplies from the home delivery company. A little while later someone from nutrition came in. She told us we would be bumping Jillian up to 48ml per hour now. We said on plain breast milk right.... no, it seams that the nurse we talked to last week had not documented that change. No one was sure where that came from and she said we needed to go back to fortifying to 24 cal.
Around 3:30 they came in and said they would be discharging her soon and gave us her script for oxy to be filled at the pharmacy. Brent went down and got it filled. Around 4:45 the nurse came in with the discharge papers. We signed and packed up our stuff. We got out to the car around 5:30. We got in the car and headed home.
When we got home Brent's parents and brother were waiting for us. Dan was making us dinner. We gave her meds around 10:00 and went to bed. She slept until I got up at 7:30 to pump. I pumped and she played. I went downstairs to put the milk away and came back up and she was asleep again. She slept until around 10 when I went and woke her up because her milk back had run out. I realized that she was still in her diaper from the night before. They might say 12 hour however they dont really last that long. There was pee EVERYWHERE! I picked her up and ended up with a wet shirt. I got her cleaned up and got all the wet laundry in.
Jillian and I hung out during the day and got some things done around the house. In the afternoon I went to change Jillian's diaper and looked at her incision. I noticed that how her tube was laying was pulling on the incision. In the hospital they did not show us how to tape her tube so that it did not pull, I only knew that the way it was pulling was a bad thing because of all the reading I had done before her surgery. I then figured out that her tube was going to have to stick out more and then come back down. I struggled how to make this work. Dan got home and noticed me sitting on the floor getting upset and had me call his mom for help. We talked it through and I made it work. That night I posted to Feeding Tube Awareness asking if anyone had a better idea of taping. I am still working on getting it just right but I think it is better then it was at first.
We packed up once Brent got home and Dan and I took Brent's car into Kenosha and a while later Brent left the house in the van with all of his DJ gear. When we got to mom and dad's my dad's side of the family was there eating tacos. My grandma makes these amazing home made taco shells out of corn meal! Food gathers the family! We got to catch up with people and even had Napolian for dessert! We headed to bed late. Jillian only took 3 doses all day of oxy for pain. She is so strong!
Since she has gotten home she has randomly been puking drool. It is coming up with a lot of force. I'm not sure what is up with that. I'm watching it to see what is up and if I need to call GI. 
Friday med supply also came. They brought a TON of cut 2x2 pads (we have pads from KangaRoo-tique so we don't need these), a large box of cotton swabs and 3 extension tubes for us to try and the last 5 bags we are allotted for the month. Other then the 5 bags, I'm not seeing the need for many of these things...
I want to thank some amazing people for there help last week. First, my mom for all of her help! She came the first night and brought me dinner and helped give Jillian a bath. She brought me dinner each night in the hospital! Thank you to Dan for searching the house for bear even though it was in the car :) It is a true friend to turn a house over for a little girl's bear. Thank you to all of the people for the phone calls and texts and facebook messages of support. They mean a lot!

I'll update about our weekend later. Right now I have a little girl who has only taken a few little naps today so she it sleepy and a house that NEEDS work because in the last two weeks we have only been home a couple of days so it has been the dump and run. Goal of the week: find this house again while Jillian heals!

July 19th, 2013

Whirl wind day 2!

Jillian did not sleep well the night of the 18th. Doctors started coming in around 6:45am. They checker her out and looked in her ears. She still had so much wax they could not really see in them, but she hated them touching them...
Rounds happened mid morning and Dr. Adrian Miranda was the floor doctor right now. I liked him a lot because he really seamed to know his stuff. Rounds to me is kinda funny because it is interesting to watch the residents report to the attending. The current resident was timid and did not look at Jillian's case too much before rounds so I helped him out. The attending asked some questions about Jillian. I explained that she pukes hours after she eats sometimes and I finally had a good conversation with someone about the possibility of delayed gastric emptying. We talked about the Fundo option that surgery had brought up the day before. The GI dr was on the same page as I was about it. He said we know the J feeds work so lets let he get bigger and figure a few things out before we do that. He took it as a teaching moment for the students. He asked what at the three main times you dont want to do a fundo, they did not know so he helped them: 1. if they have cp (Jillian does not), if they have a mitochondrial disorder (we still have not ruled that out), or if there is anything neurological going on (we go for an EEG on wednesday). That puts her 2 strikes down. He said that if the later two end up to be true of Jillian and we did a fundo that puts her at high risk of it failing or her getting gas bloat syndrome. Gas Bloat has a lot of complications with it! It means all the extra gas builds in the stomach making no room for food and a lot of pain. He said it is a nasty disorder that is painful to watch. Right now I feel like with all the unknowns of Jillian we are not ready to take that risk when we have something that works. 
We talked a little bit about her vomit. She can eat something and puke it many hours later. The dr said that 1/2 of you food should be digested out of your stomach an hour after you eat it and she should not have any to come back that much later. We talked a little bit about delayed gastric emptying (another reason to not do a fundo) and what we would need to do to check for that. We decided that at somepoint we should test for that.
We then talked about the test scheduled for the day: the PH study. He asked the team why you do a PH study. They said to see reflux. He said that with Jillian's case we know there is reflux. He talked about the reasons why a ph test is best and that for Jillian it is fine to give us some baseline numbers but that it would not really tell us anything but since we were stuck there anyhow we might as well do it.
We hung out for a little bit and then someone came in to place the ph probe. It is kinda like an NG tube with sensors. As she was telling us about it the attending GI walked in. It seams that she was trying to do the test out of the way of prodacall and there was a little tension in the room them. His partner left the room, came back into the room, the two doctors then left and the first woman continued. Then they came back in the room and asked to speak to the woman. During this time the woman from Child Life came in and asked if we needed anything for Jillian and said that we had made a good job making the hospital room like home. She left and my in-laws came in to visit. Then the doctors and the woman came back in and explained that they would not be doing the test because we would be sitting in the hospital just for the test and keeping her on IV fluid when she did not need to be and that they would be placing the NJ back in and we would be going home. I have a feeling they figured out during that time that Jillian would not fit into the OR schedule that day. Also, the hospital does not place NJ tube on the weekend so if we did the ph test Jillian could not get the NJ tube put back in until after the test was done. Well the test takes 24hrs and that would have made it done part way into Saturday. We would have then had to keep her in the hospital on IV fluids until Monday. We decided since the test was not a big deal to not bother.
Around lunch time they came and got Jillian to place the tube in intervantional radiology again. Jillian was not  a happy person about having it placed again and was very crabby. We took her up to the room and brent went to get food from the cafeteria. She and I were on the floor playing while I ate my lunch and in one fell swoop she pulled  the tube part way out and shoved it back in. I called for the nurse. The nurse and a med student walked in the at same time. The nurse started helping and the med student had come in to see about discharging us be decided that we needed to go back down to make sure the tube was still in a good place. About 40 min later we went back down. Jillian had actually pushed it into a better place then it was before!
We went back up and the dr came in and asked what we needed to go home. I said I wanted to make sure the tube worked before we left, have her ears checked again and talk to the surgeon. She looked in her ears and said they were still too full to see anything. She said we could do a tube try for a bit and agreed that was a good plan and said that she was not sure if the surgeon would have time for us but that if her did not she would have him call us.

We got the tube set up and then we packed up and started to get ready to leave. We where just about to sign the discharge papers when the surgeon came in. We talked about the options again. He said that we had two options. To place the GJ tube now, and then do a bunch more tests because he thinks we need to figure more things out, or figure more things out then place the tube.  We said we want the tube placed now. He said he would have his assistant call us monday to set it up. We were then discharged and hit the road.
Overall it was a long day with her. She did not sleep much at night nor during the day. We did have some happy time with her new toy though and she did like not having a tube in her nose. 
Now we wait for the phone call again... I just keep reminding myself the HE must have a plan in all of this timing. There has to be a reason!

Got Milk?

I think I am coming to the end of something that I thought would end a lot sooner then it has. Something that has taken a lot of time, emotion and dedication.
Before Jillian was born I decided I wanted to breastfeed for as long as possible. My goal: one month. I figured it would not work well and I probably would not have enough milk based on my mom. I figured I would try and thought that any milk that I did get was a blessing but I was not too attached to it.
After my C-section I insisted that they bring me Jillian right away (they wanted to wait an hour for me to rest, but the surgery had already taken a half hour longer then expected after her delivery). I knew from all my reading that if I was going to give breastfeeding the best shot I needed to start right away no matter how drugged I was or the pain I was in. I made all visitors wait and gave it a try. With help from the nurse she ate.
Jillian was born on a Friday night. The following Friday we went in to see the lactation consultant. Jillian had lost more weight then expected but with the assistance of a shield she was latching and eating, just it was coming back up. The consultant suggested that I pump extra milk and give her 15ml after each feeding to get extra calories in (If only I had known then the significance of 15ml bottles and how long they would last...). Jillian started to gain a little weight. I would pump throughout the day to have the 15ml bottles ready to go for her. After a while we backed off to her only getting "extra" milk a few times a day!
When Jillian went into the hospital the first time in February we started measuring her intake more along with the amount that came back out so I started nursing less and less to be able to make the measuring work. She went to see GI to follow up after the first hospital stay and they decided she was not making good weight gain and needed her bottles to have Alumentum added to give it extra calories. By the time Jillian went back into the hospital in March she was only nursing about once every few days and I was pumping the rest and giving it to her by bottle. Nursing at that point was really too messy too because she would puke while eating and both of us would need new clothes by the time she was done eating. Right before she went in for her second hospital stay was my last time nursing her. During that stay we put the NG tube in and everything became exact measurements.
Since then I have pumped milk around the clock for her. I have filled a small chest freezer and a good portion of our freezer with milk. I am easily about to get out over 50 OUNCES of milk a day and Jillian takes around 28 ounces a day. On top of the daily surplus there have been tests and hospital stays that have equated to large amounts of time without her "eating" and me still pumping.
I had looked into donating the milk but because Jillian is on a feeding tube and I take daily medication for asthma I am not able to donate. I looked into selling it but it is not really legal or illegal and I'm not hopping onto the gray market this week and the thought of meeting strangers to sell them my milk was kinda strange to me. If it was someone who needed it that I knew it would have been different.
So that brings me to now and what do I do now. I have debated back and forth about keeping pumping. This has been far more emotional then I thought it would be. For someone who was not all that attached to it before hand I have become very attached! But at the same time I am dumping milk everyday because I have no where else to store it. I even have an extra stash at my parents in-case we lose power. Pumping however dictates my life sometimes. I have to schedule things around it and try to squeeze it in and the pain sometimes of waiting too long is frustrating.
So I think I am going to let it go after Jillian's surgery. I dont want to have to bring frozen milk with us so I will keep pumping until she is out of the hospital and then ween down. My goal in nursing was to provide Jillian the best start to life I could and I think I have done that. Even though I will not have a fresh flow of milk she still has a chest freezer and part of our freezer to use up. We are estimating that will put her close to 10 months old, if not longer before she runs out of breast milk. At that point we will switch her over to formula.
I have missed a few times lately that I don't nurse her anymore, even though she always had to use a shield because she could not latch without it. I am glad however that she is not nursing now while she is teething. I guess one of the advantages of the tube. 
Man even as I type this I continue to have the debate in my head. The thought of what if the freezer dies? Remembering how much better her body seams to do the less formula we add to her milk and wondering what it will be like what she will be on just formula. The questions cycle my brain round and round. But on the flip side pumping is wearing me out. But at the same time it delaying a period is nice. But it takes physical time away from Jillian. I wish this was a completely cut and dry choice. I feel like both sides have merits, but what one is right? Does everyone struggle with this choice this much? I just want the best thing for Jillian and sometimes I am not positive what that is. Oh motherhood! 

No catchy title here

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

Good:

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

Frustration

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

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

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

Today:

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

Prayer Requests

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

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

Waiting with daddy for the doctor

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

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.

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.

HOME!

Jillian was up a few times last night whining and coughing. We got a lovely wake up call though at 5:50 this morning (she was up from 4-4:30). I woke up to Jillian out of her bouncer and in her crib, her pulse ox monitor on the bouncer and someone I had never met standing over my child. This is not the way any mom wants to wake up! The unknown person introduced themselves and told her she was there to draw blood... at 5:50 in the morning! I know they don't sleep at the hour however I had finally gotten my kid back to sleep and myself. After being poked Jillian decided it was time to be up for the day...
The first doctor came in and asked me what my goal was for going home. I said that I was not taking her home while her our plan for feeding her included something she was choking on without a plan to get the choking to stop. So it was decided that she would not get any milk mouth so she would not choke.
Rounds started and they decided we would try two 15ml water bottles again today. She also got another dose of laxative because she still is not pooping right. They briefly talked about switching her to Enifamil AR, but the dietitian said that was not a good idea. I have a milk allergy so I am dairy limited and Jillian is on Alumentim which is for kiddos with allergies so it has milk broken down differently. AR is milk based and they don't want to rock the boat and move to something that has more dairy in it just in case it is a problem. After round's Brent's mom came to visit Jillian and I for a little but. 
Case management came and visited us. They called our DME (direct medical supply) and had it arranged so we will get NJ supplies now. She also called our home pharmacy with our insurance company to let them know that Jillian grew (YEAH!) and her and her dose of antacid needed to change.
The dietitian came back and asked when and why we switched to 24cal milk. I told her it was switched when we were admitted and I have no idea why. She said our current amount of food per day is significantly more then when we came in and that is why we have been seeing the amazing weight gain (plus she is not letting any of it go!)
I then had the joy of getting all of our things into the car. It took me two trips without Jillian first. Then I came back up and signed the discharge papers. On our way out we had to stop back at the GI clinic to have Jillian  weighted on the same scale she was weighed on last Friday. Her weight was 13lb!!!!!!
Jillian's swabs came back negative for any nasty viral infections so she just has a run of the mill upper respiratory junk.
We now have follow ups to do! We see one of her pediatrician's partners this Friday to check on her upper respatory junk. We see her pediatrician next Wednesday for a weight check and follow up. We follow up with GI next Friday for a follow up and our genetics appointment was set up for June. This momma is going to be running :)
Tonight we have been trying to adjust to life with an attachment. I think this next 24 hours will be the hardest.

And....

SSSSSSSSSSSLLLLLLLLLLLLLLLOOOOOOOOOOOOOOOOOWWWWWWWWWWWWW Day here. I was hoping for more tests however we really did not do any.
Jillian choked on her 15ml bottle at 9pm last night and continued choking off and on for a long time. During the night she developed more of a cough and my mom and I sat straight up multiple times during the night. Around 3:30 the coughing was so bad that mom decided she would just stay up with her. I got up at 5 to pump and took over so mom could get some sleep til a little after 7.
The morning started out like any morning here... with a lot of visits from different doctors. We talked about several different things with genetic disorders and feeding concerns. I brought up that GI had mentioned on Friday about the possibility of  a GJ tube to see if the tube in her throat was making it worse and the doctor said we would talk about it at rounds but we did not. I don't want to seam like I am begging for my child to have surgery but if that is something that is going to help her then I am at the point that we need to consider options that might help. When the team came in for rounds they said that they wanted to try mixing rice cereal into my breast milk and give her that in a bottle. We also decided that she would get more stool softener and suppository today  since she was not seaming to regulate herself yet. Lastly we decided that since Jillian was coughing, and had green gook coming from her nose and eyes that we would test to see if she currently has some sort of viral infection going on that we might be able to catch or help before it got too bad. It will be a little while before we get those test results back. Until then we are in isolation now so everyone that walks in gets to get all decked out in gowns and masks. I feel bad for them.
Jillian got her bottle of 15ml of fortified breast milk with 1/2 tsp rice cereal around 12:30. She took it down just fine like normal, the only difference being that it took her a little longer because she was drinking thicker milk through a size 1 nipple. Shortly after she was done eating you could hear her refluxing and then she started choking again. The nurse came in and she said she could hear her refluxing from the door. Jillian was able to keep the food in but she had to work very hard at it and was very crabby. Around 4:30 she started refluxing again (she had not taken anymore orally since 12:30) and started choking. She has been refluxing on and off all night and choked again while she was playing in her crib after getting ready for bed. For now we have gone back to nothing by mouth.
After the 12:30 choking we decided to do a 24hr pulse ox study to see if she is table to keep her numbers up while choking. So far she has been pretty good about keeping her numbers up and has only gone off a few times when the machine was not also reading low reading. Pulse ox is so hard to take on little ones.
Today we had some visitors.  My mom came up last night and spent the night with Jillian and I since Brent headed home last night so he could work today. She had taken today off to go to genetics with us and instead just spent the day hanging out with us here. She is so amazing! She also ran to Target for me to get me some more leggings and plain T-shirts and to get Jillian a few more outfits that snap all the way from head to toe and don't have feet. The gowns here are way too big for Jillian but they need to get at her often so it is easier to have her in a quick opening outfit.
Our friends Gary and Kathy came up this afternoon and hung out with us. Brent came back up after he got done with work today. Tonight our friends Jaime and Jason came over and mom hung out in the room with Jillian while the four of us went to Cafe West for dinner. It was so nice just to talk and pray together.
Jillian ended up spending about 85% of the day sleeping which is not like her so I know she is fighting something. She just wanted to be held today and I figure with everything we are putting her through right now that is ok, it is just going to be hard to break her from it when we get home because she will not get held like this at daycare.
Well I am going to follow the advice of when a baby sleeps you should sleep too!

A new plan

I finally have a clue of what is going on here! Rounds can be the best time of the day and sometimes I wish they happened more then once a day.
Jillian took a bottle around 9am and started choking promptly after. Rounds started around 9:15 and Brent stayed in the room with Jillian because she was choking so much and I went into the hall for rounds. They asked how the night went and I told them that it was uneventful. I informed them that she had been choking for several minutes at that point and they stopped and listened to her choking. They then decided that all breast milk feeding would stop by mouth. She is now on continuous feeding 24 hours a day at a rate for 34 ml/hr with breastmilk fortified to 24cal. She gets to try 1/2 an ounce of water 3 times today but if she chokes she is done with oral intake. The purpose of the water is to keep the eating skills however the volume is not being counted into her needed fluid intake. We are also trying to figure out how to make up for the calories lost yesterday... That frustrates me because she did not need to get as behind on calories as she did but lack of communication caused that.
We also talked about a few tests. I asked about a swallow study to see if she is aspirating and  the doctor told me that she can hear her aspirating just by listening to her so she did not feel that was needed. We also talked about a ph study. The problem with that is it is a second tube that needs to go down her nose. Since Jillian is so little they cant put two tubes down one nostril and she is too little for a tube to go down each side so they said the feeding tube might have to come out to do that test and it is a several hour long test.
The decision was made that no tests would be scheduled until Jillian's GI doctor is back in on Monday (right now we have floor drs) This means we will be here until at least Monday and longer if they decide to run tests on Monday.
There has been a little talk of doing surgery and placing a G or GJ tube. With that she would no longer have a tube coming out of her nose, instead it would be surgically placed in her belly. This would make it less like likely that she could pull it out. She currently has a bridal (plastic piece that holds the tube in place and is looped around the inside of her nose) on her NJ tube to try to secure it better then just tape. I'm not a big fan of the bridal since it hurts her if she pulls on it, however it was placed when the NJ was placed. It is really hard to keep a 4 month old from pulling on a tube coming out of their nose and she hits it with toys all the time. I am not excited about handing my child over to surgeons but the past few days have proven even more that this is not a short term thing and having the tube surgically placed might be the best thing.
Around 9:50 this morning I ended up calling the nurse in to see when we were going to hook her back up to the tube (she had been off for over 2 hours). She came in after a while and told me we would start again and that our care partner would bring in a bag. We got the bag and I hooked up her tube and got everything started. Right now she is in and out of sleep. They brought her a mobile and she seams to like it (its not her animal friends though, which she finds fascinating)  We are just hanging out.
Jillian would also like to note here that she wishes her uncle Seth a very happy 21st birthday. You said you did care what we did today, so she decided that we should spend it at Children's. Next year... make a plan :)

We got a good view this time! I can see the mall :)

A new floor

Today we had a 12:30 visit with GI to discuss Jillian's choking and vomiting. She proved to us once again this morning why we needed to come when she puked everywhere for the second morning in a row. My mom joined me at the appointment. We did the typical first. A weight check (she is up to 12lb 12oz), length (24im) and head circumference (I did not pay attention...ops!). Then we were visited by someone who I think is like a CNA or something. She asked a few base questions and then a nurse came in. I filled her in on everything that has been going on. She then left and reported everything to the doctor. The doctor came in and verified what the nurse told relayed to her and took a quick look at Jillian. She then said that we could not continue like we have been and that she needed a NJ tube (this is a tube that goes into the intestines  instead of the stomach). She then said something about getting paperwork started and a bed. My mom and I looked at each other a little confused about what exactly was going on. After a few minutes the doctor came back in and said they were securing a bed for her to be admitted and that we needed to head to radiology to have the tube placed (Because these tubes go into the intestine they have to be watched being placed). We then left GI and headed to the hospital section. (Children's here is all connected, GI is in the clinic building and radiology and patent room are in the hospital. The two are connected by a skywalk)
We got to the skywalk check in desk and GI was calling my cellphone. They said that radiology had a 2 hour back up and that a bed was not ready for us either. We had not had lunch yet so we decided to stop at a bathroom and head to cafe West in the hospital. I barely got a few bites into my lunch and GI was calling again letting us know they had a bed secured and once we were done with lunch I should head to admitting. Within a few minutes of that the loudspeaker in the hospital announced that the parents of Jillian needed to call a certain number. I then went to the desk and asked where a phone was to call that number. They told me there was a phone around the corner. I did not find a phone around the corner but I did find the admitting desk. I then went and checked in with them. They said that it would be another 10 minutes before her bed would be ready but that I needed to bring Jillian into the admitting office to get her a name badge. As I was walking out of the admitting office I was greeted by someone from radiology. Apparently admitting was not the one who paged me, that was radiology and they came looking for us since I told GI that we were in the cafe. She told me they were ready now for Jillian. I ran Jillian back to admitting quick to get a band and then headed to radiology. We checked in (this took a long time because the orders were for us to have the test done once we were in the hospital and she was still yet to have a bed) and had us wait. They then called Jillian and I back to a work room where many people came and explained what would be going on and I signed consent. Jillian was not too pleased with this process of people talking to me and let us know, however they provided sugar water for her passy so she was tolerating it. I then had to hand my baby over to complete strangers and go back to the waiting room with my mom. It took a lot to not sit in the waiting room and cry. My mom and I watched Lady and the Tramp as we waited. Eventually the radiologist came back and said it went well and she would be out shortly. After a while a nurse came out with her and escorted us up to West 11.
Once on the floor we had a care partner come in and start Jillian's vitals and the nurse came in. We then sat for a long time seeing no one. After a while the nurse came in and went through the long list of admitting questions. We also had the first resident come in and do a physical exam on her. After a while again a second resident came in and took Jillian's history and did a physical exam. Around 7pm we were finally given the go to feed Jillian a bottle of 45ml. She took it like any other bottle (not like she had been starving, which she should have been since she had not had any food since 11am).
It is now around 10:45pm and we are still waiting on orders to be figured out for feeding. They are talking about a continuous feeding schedule where she is hooked up for 21 hours of the day with three 1 hour brakes. Jillian is sleeping comfortably like none of this is going on, which is a blessing that she is not screaming but it is also concerning that a child who should have been hooked up to a feeding tube for 3 hours now is not asking for any food, plus she missed one of her bottles today.

It is now 10:50 and the nurse just came in wanting to start her on just plain breast milk going into her tube because she thought she needed 24 cal Alimentum. We explained to her how you fortify breast milk and I looked up the recipe online for 24cal. We then mixed it and she set up the pump (we had to explain to her how to set it up and still there is a bag with  150ml in it with a pump set at 3000ml and a bag with a ton of air in it). We are running at 30ml/hr. Hopefully this helps! I will try to keep posted as things go on. We have no idea how long we will be here or what the plan is right now. There has been a little talk about a few tests that if they decided to do them would have to wait until Monday because the appropriate people are not in on the weekends but we will see. For right now we wait... and try to get some sleep!