Speech eval round 2

As I was putting Jillian to bed last night my comment to Brent was "She did not poop today... we ended antibiotics yesterday, she will now get backed up, we will end doing a lot of things to get her poop and possibly have to take her for the doctor for it, she will start pooping again, we will have a normal few days, then she will start vomiting again, she will get pneumonia and an ear infection, she will go on antibiotics again, poop like crazy for a couple of days and then we will be back here. It's a month long cycle that we have lived in repeat for the past three months... but hey at least there is constancy."  You have to give consistency some credit right?!?!?!

Yesterday we went for her speech eval at children's. We were going to have a GI appointment too but they called on Wednesday and cancelled. We still had to go into GI though and do a weight check.

Last vitals on 1/6:
Length: 28.3in (11.76 percentile)
weight: 9.78 (21.56lb)

Yesterday on 1/31:
Length: 28.7in (13 percentile)
Weight: 9.66kg (21.3lb)

The nutritionist will be calling to let me know of any changes to her diet. From November to December she gained too much weight on the EXACT same diet and now she lost.  We are not sure if the loss is due to her being active or her having been sick or if it is just her goofy digestive system. She has been on the same diet for months and she has never made the same gains/loss any month. Her growth charts in spots looks more like a heart monitor.

Then we went to speech. I filled the speech pathologist about Jillian history. She asked me why we were there for a re-eval and I told her that the gastric motility dr was mad that we stopped oral feedings and he said we needed to come see her. I said that he told me that it did not make sense for her to be aspirating on vomit if she had a good swallow study... her comment "he knows better then that." She just kept shaking her head and talked about a few studies that show that what I was saying was correct. She said she agreed with our choice to pull bottles because of the risk of pneumonia and that she thinks that was a good idea. She felt around Jillian's mouth and said that everything was normal for a child who did not eat orally.
I then spoon feed Jillian 2 small baby spoonfulls of formula. The first one she let roll out of her mouth but the second one she took like a champ. We then tried sweet potatoes. She took the first spoonful and let most of it come back out but the second one she did just fine. We are not talking about much food here. Less then a tablespoon amount total. We then kept giving her the spoon but with nothing on the top. She took it like a child would who is learning to eat with a spoon. She wanted more but we knew not to push it or there would be puke. She did a great job!
After she was done we talk about how she has all the oral skills and that this is a GI issue... what have other specialists said:
Neurology: this is a GI issue
ENT: this is a GI issue
Pulmonology: this is a GI issue
Genetics: this is a GI issue
Birth to 3: this is a GI issue
Speech: this is a GI issue

GI keeps sending us to other people but all of them keep saying that this is a GI issue that is affecting other areas.I was not expecting to hear any differently yesterday either.
Speech's recommendation is that we can give her food to play with at meals but not give it to her to eat orally. That we can do tastes with tiny amounts but not enough for her to get any volume. She said that if she is having trouble to stop.
On the way home from speech she must have vomited in the car because there was orange all over her white coat. About 1/2 way home she started moaning for several minutes. That is not like her at all. She normally sleeps the whole ride home but instead she had a hard time sleeping. When I got home I vented about 7-10ml of orange out. At night when we hooked her drainage bag up we got orange globs out... 8+ hours later. So, typical Jillian motility...

Orange Chunks in the drainage tube

This post made me really nervous. Why? Because I am always afraid that then we tell people Jillian is doing a food trail they will think that she is able to eat. When I talk about her trying baby food I am talking about the fact that she ate less the a tablespoon and she vomited and we got some back out hours later. We are not talking about a sustaining amount of food. We are talking about an amount the still makes it so she is 100% tube fed. We are still talking about less then a tablespoon amount just so that she can learn the skills normal to a kid her age but not take in enough to make her puke. We are working hard to keep food a positive thing and for it to stay positive we have to do what we can so that she does not associate food with pain. I just don't want people to think that because Jillian plays with a spoon that has a little favor on it that she will be off the tube soon or that she is able to eat normally. That is not the case. Food trials are one of the hardest things emotionally for me. I see her in pain. We experience vomiting and moaning. The fears of choking are very present. I can't explain why food tastings like this bring out so much emotion in me, but they do. So, no, we are not any closer to her eating orally for calories, but I am ok with that. I was not expecting that we would be after speech yesterday.  We are blessed that she has a feeding tube that takes care of her need for nutrition. She is well nourished and happy and that matters a whole lot more then eating orally.

She found a Doc blanket on clearance... she carried it through the store

She can be such a ham!

She and daddy were dancing

What is more fun then a chair in a tent?

She loves her dolly

Pneumonia round....

So pneumonia keeps us hopping. Sorry for not posting an update for a few days... Here is a recap starting back at Thursday:

Thursday: Lazy day at home. Jillian and I hung out at home and she slept off and on and wanted to be held. I got some cleaning done around the house, in trying to get ready for her birthday party on the 14th. We did nebs every 4 hours.
In the morning I gave her the acid reflux meds. For one of the first times ever she did not want pink meds, which she normally loves. I ended up putting 1/2 of it in her g port because she did not want to finish it. Shortly after it was all in her body she started to reflux. It is normal for her to reflux her med. What is not normal was what happened for the next half hour. She coughed, choked and projectile vomited for over a half hour.  I have not been that scared in a long time. A little over 2 weeks ago she started vomiting stomach contents again. It has become more and more uncontrollable and in the past week she has not even been able to keep her acid reflux meds in her tummy. She has not had a bottle in over 2 weeks. She just cant handle it.

Sophia makes a good neb partner!

Friday: Doctor day! Brent and I gave her meds in the morning and 10min later she was puking all over our bed. I recorded it to show to the doctors. It is such a helpless feeling to watch her puke everywhere and there is nothing you can do.l It is even harder when you know that puking is causing pneumonia. We are not talking about a little spit up here. We are talking about ounces forcefully coming up. Her screaming in between puking and coughing. She looks scared and in pain. Once there is nothing left to come up she continues to cough and dry heave and gag. Once it starts there is not a great way to stop it.  
We started the day by seeing the nurse practitioner. My mom came and joined us. She listened to her lungs and said the one lung was sounding a little better then the ER report said (the ER dr had told Dan and I that they both sounded good....) and that the other lung did not sound any better then it had on Wednesday. She said we needed to go see Pulmonology at Children's and they wanted them to see her ASAP so they were going to see how fast they could get us in. We talked about getting more ned meds. Prescriptions can be such a pain sometimes. I then asked her about what the nurses were talking about in the Children's ER the previous Friday when they had a hard time cathing her. She took a look and said that yes the skin over her urethra was almost fused together. She sent in a script for some Estrogen cream. She also said that her yeast infection in her diaper area is back. We are just constantly fighting that. I think we are on our 2nd or 3rd tube of cream for that.
Then we had an appointment with GI at Children's. First one of Jillian's favorite people at Children's came in first,our awesome dietion! She said that Jillian gained more weight then wanted and she was not sure why. We can't have her on less formula a day then she is on now because then we run the risk of her being malnourished. She said she would go talk to the doctor and they would come up with a plan. The one of our other favorite people came in, the nurse. She asked us a few questions and then headed out. Next the doctor came in. She said that they had talked and they wanted to start her on something called Complete because her one test came back that she had dumping syndrome and  a recent paper was put out by the Children's hospital in Cincinnati saying that Complete is best for kids with dumping. Complete needs to go into the g port. At that point I stopped the doctor and told her g was not an option after how life has been at our house recently. I showed her the video and she got what I was saying. A child who has nothing go into their stomach each day other then acid reflux meds should not vomit, much less vomit for a 1/2 hour at a time. The vomiting should not cause pneumonia twice in 6 weeks. Once the doctor watched the video she got what I was saying and agreed that nothing could go into the g port other then meds that have to be digested in the stomach to work. She said that even though that one test came back showing dumping that she obviously has gastroperisis and we need to treat her for that. I agreed. She then did her exam and asked when the last time she had pneumonia was and I told her about Jillian turning blue on Wednesday. We then came up with a plan:
1. Each night Jillian's g port is now hooked up to drain all night. We are hooking a catheter bag up to her g port and everything that her body makes during the night drains into the bag. Jillian is on high doses of meds so that her tummy does not make a lot of acid however it will always make some acid and gastric juices and Jillian has progressed to the point that she can not handle her own gastric juices at night without choking on them refluxing. In the morning we disconnect the bag and measure everything that drains during the night. If it is more then 100ml (4 ounces) we have to call and they will tell us how much Pedialite to add to bag for the day to help make up for the lost fluid. So far is has been around 20ml of drainage, which is what we were expecting.
2. Jillian has been refereed to see a gastric motility specialist. We are very fortunate because there are not a lot of those and we are fortunate enough to have 5 gastric motility specialists in Milwaukee. Many families have to fly their children out of state to see a gastric motility specialist. We are being refereed to the head gastric motility specialist. I was able to get an appointment for January 6th.
3. They are talking about the possibility of gastric motlity testing. They did tell us however that because Children's is one of the few centers in the country that does gastric motility testing that there will be a several month wait. Once again we are very fortunate to have Children's so close because many families have to fly out of state to have this testing done.
4. We are going to keep her formula the same for now and see what her weight does. This is Jillian and her weight gain has always been unpredictable so we will see what the next month brings and then we will adjust from there. I have to bring her up the week of Christmas to get her weighted again. Some moths she gains too much for the amount of calories she takes in and other months she does not gain what she should with the amount of calories she takes it. She is very unpredictable with weight gain even though she gets an exact amount of food every day.
5. We are starting Jillian on Erythromycin continually. It is an antibiotic that is used for gastric motility patients for it's side effects. Most people get very bad diarrhea from it but in low doses for kiddos like Jillian it makes their system work more regularly. This is something we did not want to do, however she has gotten to the point where we have to do something. She is not pooping well except when she is on antibiotics. Her stomach does not seam to be moving much of anything and we are having a lot of vomiting. We have hit the point where we have to try it. We will see how it works. We dont take the choice to start this lightly, but having her on a continual low dose of antibiotics is better that her having large shots of antibiotics in her legs each time she get pneumonia. 
6. The nutritionist is going to talk to someone in the GI department that is in charge of helping with coverage of supplies. She is going to see if there is any program that would help with getting Jillian's formula covered. Our insurance has a small list of conditions that they will pay for medical formula for. Jillian does not have any of them, thankfully because most are fatal, however Jillian's food is around $15 a day at this point and the price will just continue to rise. Not super hopeful but we will see.

Overall GI went really well. We were there for around 2 hours. We are normally there around that amount of time. There are so many people in and out of the room doing things and talking to us that it does take a long time. Each of those people love Jillian so much that it is a comforting place to be most months.
We also got a call back from her pediatrician's office. They were able to land us an appointment on Monday at 2:30 with pulmonology! They wanted to make sure she gets listened to now. Especially since we have gone though almost 120 vile of neb meds since August and I just picked up the next box this week.
In the evening I went and picked up Jillian's meds. Her med to help the skin separate by the urethra was $60, I about had a cow until I found out that before insurance it is $200. She is one pricey little girl!

Uncle Dan's Christmas gift to Jillian. A shirt that says "Size Matters Not" with some of the coolest creatures from out of this world!

Saturday: She was super fussy! She did not really want anything or to do much of anything. When she got up she did not want her meds in her J port, she did not want to get undressed, she did not want to get dressed, she did not want her Farrell bag taken off of her g port, she just was not having all of the normal morning stuff. She cried for over 3 hours in the evening. It took her until after 11pm to fall asleep. She would just about be out and then there would be the slightest noise and she would wake up crying. The trick that finally got her to fall asleep... me laying down next to her bed and we watched the Cosby Show. The hard part for me was the episode was funny but if I laughed she would wake up.

Sunday: It was snowing hard in the morning on our way into Kenosha. We dropped Brent off at Church and Jillian and I headed to my parent's house. We did not want her exposed to extra germs. We are trying so hard to keep her healthy already and winter has not officially started yet. She hung out at their house most of the day. After Church Brent went to an Aurora Quick Care because he has not felt good for a week and his nose junk turned green over the weekend. He has a sinus infection and his ear drums are red. Mom and I went and picked up food for next weekend and got Brent's antibiotic. Then we made the drive home in the snow. Instead of 55 we went 35 all the way. The roads were kinda yucky but we made it home safe.

Early morning neb by the tree

This week has been a little emotionally exhausting for me. I guess I would not be human if it was not. I mean my kid turned blue twice, has pneumonia and her GI track is getting worse. Strangely the GI part is the hardest for me. Yes, her turning blue was scary,  but Dan and I were able to handle it. Yes that ER dr made me mad, but middle of no where hospitals are not known to be the best and I guess I can't expect Jillian's level of care there. Yes, it is frustrating that Jillian has pneumonia again but I said two weeks ago that it was coming. I knew when the vomiting started at that intensity again that we were headed down the same path. I called every doctor that I could on Jillian's case to try to stop it but no one could. But for me the fact that we are having to go the next level of care for Jillian's GI problems just makes it all real. I know I live this day in and day out but for us it is life. I sat and watched a 3 month old take a bottle this weekend and all I could think about was that Jillian was that age when she got her first tube and by 4months she went to just water by mouth. I knew that some of these things might happen when we went to GI on Friday. I knew something needed to be done. We could not keep going like this, but admitting that you have to go to the next level of care is humbling. I am grateful though that we have this option for care. As I looked though the World Vision Christmas Catalog this week all I could do was cry. Partially because I feel so passionate for some of those causes (the only time I ever got sent to the dean's office in high school was because a girl and I got into a fight over the existence of the sex trade, interesting story...) but also because as I looked at the needs in other countries all I could think about was how if we lived in MOST other countries in this word Jillian would be dead.  She would have starved to death because she could not get the nutrients she needed or aspirated on reflux and died. That is hard to think about. My heart longs for the moms in other countries that are not able to save their child like I was able to with Jillian. I can only imagine the heart break. It's not fair. That simple. Not fair. A part of me was mad that I was able to get Jillian the help that she needs but they can't. The "why me" thought came to mind. Why am I fortune enough? And then my heart went to praise. I'm fortunate enough because God blessed me in that way. I don't know why, but I know who did the blessing, and it is my job/right/privilege/honor to praise Him. So while I might me exhausted after this week. While the thought that tomorrow we add another specialist to the circle is exhausting, we are blessed to have that option! 

The dump truck makes haling her bad around easier :)

green light means go!

Happy Dance… ok weird happy dance! I know most people would not do a happy dance when the word surgery was mention but we are and let me explain:

Jillian had an appointment with her GI doctor at Children’s today. She is up to 17lb 9oz! She gained about 18 grams a day and the goal is 15 so she is exceeding the goal! They gave us guidelines of how to adjust tube feedings when she takes milk by mouth. If she takes in 30ml in a day we can cut out 1 hour of tube time.

By mouth, we are going back to her only giving her 15ml at a time. This will hopefully drop down the puking and screaming. She can have two 15ml bottles a day. They still want us to do one of those bottles 3 hours after the pump is turned off. The point of bottle feeding currently is to keep up sucking coordination and not for nutrition. The doctor had thought about upping mouth feeds until I explained how the last two weeks have gone and then she decided we needed to back off. We are very relieved by this because the last two weeks have been really hard at times. 

We then talked about the plan going forward. Jillian has had a tube in her nose since March. There are challenges with the tube in the nose. One of them Jillian has dealt with and that is increased sinus issues. The nose and sinuses are not meant to have a tube in them, and especially not for very long. Jillian has mastered pulling all of the tape off of her face and has patches of skin that come open from the amount of tape we have to use.

The tube has been a life saver for Jillian and we are so grateful. We are currently no closer to her being without the tube then the day she went on it. With that in mind and the challenges that the NJ tube has as a medical team we have decided that it would be best for Jillian to have surgery to have a GJ tube placed. The tube will now go directly into her stomach instead of in her nose. (Here is a link to info about the surgery: http://www.feedingtubeawareness.com/surgery-docs-hospitalizations.html )

Someone will be calling me within the next week to schedule the surgery. The surgery will be done with her GJ doctor and a pediatric surgeon. When they do the surgery they will also be doing an endoscopy at the same time to look at her esophagus and take some biopsies of her throat. After the endoscopy part is over she will get the tube placed. She will have a PEG tube which has tubing that sticks out of her belly. After surgery is done she will go to interventional radiology and have the tube in her belly extended into her intestines. We will then spend the night in the hospital. There is a chance she will not be able to see the radiologist to extend the tube until the morning after the surgery depending on scheduling. If all goes as planned we should be in the hospital less than 24 hours.

The clinic today gave me a nice binder with all sorts of info about the tube. It is filled with so much information! The nurse said that I was lucky because Jillian has had the tube for so long now that getting this new tube won’t be too different.  Many people have told us that having the tube in the tummy is much easier.

Birth to 3 was going to come out today to do their initial eval but we had to cancel with them to go to the appointment. I have called them a few times and left voice mails to see when they want to reschedule but I have not heard anything back yet.

Yesterday Jillian got another shot. She did not care that a nurse stuck a needle in her leg, she just kept planning with her doll. I’m glad she does not scream with shots but I wonder a little why she does not even seem to notice them… 

After her doctor’s appointment, we went to Starbucks and the mall. Jillian and I rewarded ourselves for a successful doctor’s appointments with new clothes. We both had giftcards to spend from Christmas. I got myself some smaller clothes and got her some bigger clothes lol! Thank you to the people who provided us with the gift cards. It was so nice J

Today Jillian and I are cuddling. She seams extra sleepy today, which I am guessing is a side effect of the shot. She also has a runny nose a cough, which she also gets after having a shot. Tomorrow we are hoping to get her 6 month photos done.  I want to get professional pictures done before her tube is moved since a tube on her face has been such a

. big part of her life so far.

Part 2

We keep chugging along with this food trial. It has been a trial for us! As I typed the first sentence of this

blog post Jillian puked on me and the only thing that she has "eaten" today so far has been her acid reflux medicine... Ironic huh?
GI called while I was at work yesterday. They left me a voice mail asking if I could call them back  about Friday's appointment. All I could think was that if they were calling to cancel I was going to cry. I called back and the dr. had something come up Friday and needed to reschedule... but has moved her office hours this week to Thursday instead. So we are going before work on Thursday. It is nice to have one less day of this trial now but Friday my mom and I were going to make a day of it and go to the zoo or something after. Birth to 3 was also suppose to come out and do their eval Thur morning so I need to call them an rescedual today.
Here are the scans of the past few days:

  It seams like either she is really upset right after eating or an hour or two later. Some of the screaming she has been doing the past few days is like when she was younger.You can clearly tell she is in pain. It is like she is a different kid once she starts refluxing. I know my child will not always be happy but it is hard to do something intentionally over and over that you know is painful for her.
On the plus side we had a fun weekend with my parents. Dan, Brent, Dan's dad and uncle came over and worked on our bathroom (THANK YOU!!!!) and Jillian and I hung out with my parents. My dad and I got a new battery in my car. My mom and I went to some rummage sales. We cleaned the tape leftover off Jillian's tube and then after we torchered her we showed her a Pooh movie for the first time. She loved just cuddling up! We spent father's day with family.

In my new Exersaucer at grandma and grandpa's

With Aunt Jaime

I'm ok with baths now as long as my feet don't touch the water...

Been at this a few days now

For the two week trail I am trying to keep really good notes to be able to bring to the doctor with us. Here are the scans of the sheets up to today. You can click on the sheets to make them larger. The way the form I am using looks has changed a little since I have found different things that needed to be add/changed while using it.

For today she drank 7ml of the water. She also has been coughing every time she wakes up. I am not sure if she is choking on something when she is waking up or what is going on. Sometimes she coughs while she is sleeping too.
There is no way I could write down each time I hear her reflux but I am writing down the big ones. 
For this trail she has been her happy normal self most of the time but she tends to be upset after she eats and is more irritable. Brent and I both feel that she is more fussy and acts like she is in more pain right now then she has for over a month. We have had more times of random screaming then we were having.

She had her 6 month Dr. visit today with her ped. She gained 2oz since Friday which is great for the diet she is on. The dr said she is looking good and that her ears look good. She put in the birth to 3 referral that Children's wanted.  I'm not sure if she will qualify but we will see.
I told her dr about the trail GI is doing and how it is going. She asked if I had called GI about how it is. I told her no because they wanted to give it 2 weeks.  She expressed that she thought life would be easier if they placed Jillian's tube into her tummy because she is going to start pulling at it more as she gets older. Please pray that GI holds this same opinion and that if it is God's will that she will be able to have the surgery sooner rather then later.
She also got one shot today. We space her shots out because if she does more then one at a time she seams to get sick 10to 11 days later. I know, weird delayed reaction but this is Jillian. The nurse gave her the shot and she did not make a sound. She was playing with her passy and could have cared less that a needle went into her leg. The nurse was impressed :)
Last night before her bath she sat up unassisted for about 30sec. She would not do it for the doctor today but she is working hard at sitting up. She wants to know whats going on. Last week the three of us went to the mall after her dr appointment and for the first time we put her in the stroller without the carseat. She thought it was great to look at everyone!
She is in LOVE with her feet right now. She loves to hold onto them, however she is not a huge fan of them touching the floor while she is laying or for them to be in water. She works really hard sometimes to keep her feet from touching things. Sometimes she does some really funny sensory things...
She also is in love with her bear blanket. My mom and I got it for her a few weeks ago and she likes to just hold it. It is a mix of some of her favorite textures and she will keep it by her for hours. It is also a lot more manageable to carry around then the blankets she was trying to carry around.
On another possessive note, her new backpack said it shipped. Now is the waiting for it to arrive. I am so excited to try it. I got home yesterday to the UPS truck pulling out of our driveway. I got all excited just to find out it was a tech manual...

Some other ramblings about our life:

• My van is having an issue starting right now. If I try to put the key in and start it right away it just sputters and will not start. If I put the key in, turn it to the second key position, leave it there for several minutes and then try to start it will turn over after a few sputters. Any ideas are welcome.
• This weekend is a boys weekend at our house. Dan is moving in soon and we are getting things ready. The bathroom on the level of the house he will be moving into has some issues. When we bought the house it was not winterized properly so some pipes had problems when we turned the water on. That bathroom had the most problems and we have not dealt with the issues yet because we have just pretended like we only have one bathroom even though we have 3 but 2 do not work. Dan's  dad, Brent, Dan, and my dad are going to work on the bathroom this weekend. 
• My borther-in law was supper sweet this weekend and came out and mowed our huge lawn!

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.

The ears!

This week has been CRAZY! We are trying to get ready to have a lot of people over this weekend. We are so grateful for Dan, my parents and brother who have all given up their time to come help us get the house ready. They all work over 40 hours a week (Seth is a full time college student plus doing a project for NASA).  We are so fortunate to have them.
I am also so grateful to have some other wonderful friends to talk to when days are long. I am so grateful.

Jillian currently has an ear infection. She has green goo running from her eyes too. The eye stuff is from the ear infection. She is on antibiotics again. We had to go with a different antibiotic this time because it has been less then 30 days since she was on antibiotics last and you can't be on the same antibiotic twice in 30 days. We know this is a new infection because two different doctors looked at her ears between the two infections and said they were completely fine.  We were also told that her tube going in her nose puts her at an increased risk of sinus/ear infections. Hopefully she does not get too many more infections like this.

Jillian is currently on laxatives but it is not making her poop regular. She is still working at times to poop and not pooping regularly, but other times it comes out ok. We are currently working on figuring out the right amount of laxatives. 

People have asked us a few things about Jillian and life with Jillian and I just want to make a few statements to answer some questions/comments:

• Jillian needs to be near a children's hospital at all times. We can not put her tube back in and not all hospitals have the facilities to put the tube back in (an interventional radiologist has to put it in). This limits the places we can go and where we can travel. Plus traveling with her is more then just the normal "baby" stuff. It is the normal stuff plus the tube stuff making it feel like we are moving out anytime we stay the night someplace.
• Jillian gets all her food from her tube. She gets NO food though her mouth. She does get water that she still chokes on at times. Giving her food by mouth is not an option because of the choking and vomiting. If Jillian's tube comes out she is not getting nutrition which is why it needs to be replaced quickly. She gets the same amount of milk in a day as a typical baby but she only gets a little over an once every hour. She needs to get the correct amount of milk a day to grow and be hydrated.
• I don't know when the tube is coming out and no I will not guess for you. All I know is it is in there for now. I see the tube as a life saver, and as much as I want Jillian to eat "normally" I am not running today to get the tube out because I would rather her be healthy then have the tube out. 
• We are not trying baby food right now and the doctors are not even having that conversation. The APA  recommendation for starting baby food is 6 months old and she is not that old anyhow. 
• No my child would not be happier with "real" food. She is a baby. She should be getting milk, she just gets it a different way and if you ask me I think she is pretty happy.
• No we are not currently looking into taking Jillian to any other specialists (ie second opinions). She is following a very common course of treatment for her symptoms and I don't think anyone else would have any other opinion and what we are doing now is working. Jillian is growing and developing and that is the goal. I like her doctors and I trust what they are saying.
• Nope, I don't know her exact weight today. We do not weigh her everyday :)
• We don't really leave Jillian. She comes to work with me and while she is in her own classroom I am in the room next door.  Brent and I dont really go places without her. First we really like having her around and we feel like we dont get to spend enough time with her as it is so we like to be with her as much as possible. Taking care of her is a job and a job we feel is ours. There are many things that need to be done to take care of her. I joke each night that I am the chemist as I am mixing milk and measuring things. Her pump likes to error at times and there are many different things that need to be done to fix it. Jillian is also on multiple medications that need to be given a specific times of the day in specific ways. So while we are very grateful to the people who have offered to take her but it is a very limited occurrence that us leaving her happens. Also whoever takes care of her has to be currently infant CPR certified and have spent a lot of time with her to know all the "Jillian" things. Call me an overprotective mom, but this is what we feel is best.
• Jillian is currently growing into 3-6 month clothes! I have started packing away her 0-3 month clothes! She has been in them since she was a month old and it will be nice to hopefully have her in all 3-6m clothes by the time she is 6m. No, I don't gauge how she is doing based on clothes size (I try to always remind myself that clothes have arbitrary numbers... I bought a size small pants the other day...) 
• Jillian's pump is filled at 6am, 10am, 2pm, off from 6-8pm and refilled at 8pm, 10pm and 2am.
  
• Yes I have lost weight. I was 196lb before I got pregnant and I an down around 150lb. My secret... having Jillian :)

If you have any more questions... ask. But remember that this is my baby we are talking about. Also feel free to check out this article about tube feeding from feeding tube awareness: http://www.feedingtubeawareness.com/for-friends-family.html

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!