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.

tooth

Jillian got her first two tooth on Tuesday! Both came in at the same time. They are her bottom two fount teeth. On Saturday I noticed two buds under the gums and then nothing else until they were both out when I walk in to see her in her classroom.
She has been drooling a lot with the teeth. She has been crabby a few times the past few days and I have heard her gulping making me believe that she is refluxing the drool that is going into her tummy. Once she burps she is better. Poor girl has reflux even when she does not eat.
I am nervous about the appointment tomorrow. It could bring change which is always scary. We have been on the same schedule for the past month and have gotten kind of use to it. We are also talking about tests and other unknowns and that always makes me a little uneasy. Thankfully Brent is going with me tomorrow, however medical stuff is not his thing but he wants to be a part of her medical team even though this is not his cup on tea. For me medical issues are just a part of life. It comes with my family. Part of my anxiety with doctors comes with all of my own struggles. I am always so afraid I will not be heard and listened to. The nerves are affecting my health right now. I am so tired it is hard for me to function right now. Tonight we made are questions list. I am trying not to think about the appointment too much though so I don't work myself up. I am focusing on getting to see some people that think my little girl is great!
I will try to update tomorrow, however we are going to spend some family time tomorrow so it might be saturday morning before I get an update up :)

Prayer

At church right now we are going through a series on prayer. It has really challenged me and has been something I really needed! I feel like prayer in my life is something I am getting kinda right or really messing up and I have felt like I have been in a rut for awhile.
Some people have been asking what they can pray for us. Being in a family of believers, it is so encouraging when people authentically pray for you. Here are our prayer requests currently:

1. I know this is a little strange, but I am praying for abnormal test results. This is my prayer because they might point us to a reason. Strangely, I have become more and more ok with not knowing the exact "why" of Jillian's eating differences however I think there might come a time when knowing what is going on could be very helpful. I also see myself getting frustrated at some point with not know why but I am very grateful for the patience He has given me to be ok with not knowing the "why" right now and trusting in Him.

2. I pray that I am able to have my eye's focused on Him and being ok with not having all of the answers. Sometimes that is actually the best place to be.

3. To be able to go ahead with the GJ surgery if it is what is in His plan. It would make some things easier to have the tube placed directly into her stomach. One of the things that it would hopefully help with is the ear and sinus infections. We need some test results to come back a certain way for this to happen and we are praying for it all to line up. I know it is crazy for a parent to be praying for surgery but that is what we currently think is best.

4. To be able to use this opportunity of Jillian's health to point people back to Him. I was thinking today how someday maybe Jillian can educate others about feeding differences and help to make the world more accepting.

5. For wisdom for the doctors and for us.

6. For reassurance we are doing the right thing. Parenting is one giant balancing act and this is no different. Mix health stuff with little sleep and you have a mamma that doubts herself frequently. I want to do what is best for her. I want all of my motives to always be right. I don't cut myself a lot of slack sometimes and that leads to frustration.

7. For patience with others. Sometimes in wanting what is best for her we forget about others and how to best educate others. Sometimes I am not a patient with others in all of this as I should be. I have to remember that the people around me are learning too. 

8. Praise for the amazing people that God has surrounded us with. We are so grateful for the kind words and the encouragement from others.I am grateful for the feeding tube awareness group that has provided a place for us to ask questions and get advice.

9. For pooping to be less painful for her. It took her 9 hours today to push her poop out. There was crying and unhappiness in that time for her and I hope that becomes easier for her.

10. For guidance in a lot of big decisions we have before us.

We currently are not begging for God to take the tube away. I know that might sound really strange. We see the tube as a blessing. We are so grateful that God has placed us in an area with the resources to help Jillian. If we were in a different location Jillian might not still be with us. We are so grateful for all the amazing things the tube has done for her. She is growing! She is developing! We feel that the tube is what is best for her right now. At some point God might have a different plan, but for right now we are so grateful His plan has included the tube to keep her with us.

Thank you for your prayers!

Getting back to normal

We are working on getting back to normal after working in all our free time on our house for so many weeks.

Here a feww updates on some things going on right now:

Septic: On Tuesday we had our septic pumped out. The guy said it needed work. We had someone out that afternoon to work on it. He said there is a pipe that is a little off but it is not a big deal and they blasted the system and said it should be fine now. They said we need to put baking yeast in the system every 6 months. For two city kids who have never dealt with septic before this is a little beyond us. We said if we move again someday it will be to somewhere with city water...

Brent: Brent text me yesterday at 5pm with a picture of he orange snot coming out of his nose. Not something that should be coming out of anyone. He went to the walk-in this morning and is on antibiotics. I think he and Jillian are on the same one... now if i can only get him to take the entire 10 day dose instead of just a few days...

Jillian poop: Jilly has only pooped a couple times all week. It is still seaming to be a lot of work for her. I did get her more laxatives. Sadly when I picked it up our pharmacist was not on (it was someone I had never seen there before and the person looked super confused) so I was not able to bring up my frustration with what happened the last time I got it filled.

Tape: Medical tape makes me want to go AAAAHHHH frequently! Jillian is now more active with her hands and manages to take some of her tape off everyday just by being a baby. We use 2 small strips on her face and 2 behind hit er ear. We have tried many different brands of tape and different sized pieces and shapes, and while some stay better then others (1 kind I tried this morning did not last a half hour) most cant last a day. She did get all of her tape ripped off this week. I was packing her up to leave daycare and I turned to do something and a child tripped over her line (that I thought was tucked behind) and took all the tape off in one quick motion and pulled on the bridle. I had not heard her scream like that before. She whimpered for an hour. I felt so bad for her. If she did not have the bridle though we would have been going to Children's because it would have fallen out. I stopped at Walgreens this afternoon to try to find a different tape and found one that says it is for hold IVs in. So far it is doing so much better then the rest! I am hoping for a winner!

Jillian's tummy: Jillian sees GI on the 7th and we are thinking that it is going to be a big appointment. My prayer this week has been "God show me what we need to do and show us if what we are doing is the right thing." It is a constant balancing act of are we doing too much, too little or just what she needs. I want to do the right thing for her. I feel that God has showed me in the past 24hr that we are doing the right thing for our little girl. Jillian has started liking her new bottle sometimes and has drank an entire 10ml from them a few times. She still refuses at times and can be uncoordinated but it is something! Last night and this morning a large amount of that water came back. She gets 10ml of water in her bottles. 1 Tablespoon=14.78ml of water. So she is getting about 2/3 of a tablespoon of water. I would estimate between 1/2 and 1 teaspoon came back out it this morning. 

Visitors:  Jillian has been able to see 4 out of her 5 living great grandparents this week and she should see the other one tomorrow at church. She is so fortune to be able to see them and spend time with them. Brent's grandparent's are currently visiting from FL. 

Well it is time for me to try to get a little sleep. I have a cough right now and so does Jilly so we were both up coughing last night.

Run, Run, Run!

Friday:
It was our 4 year wedding anniversary! It is one of those things that feels like yesterday but forever ago. Brent took the day off of work to get the house ready for the party. He kept Jillian home with him and they spent the day running errands and cleaning. During the day Brent's grandparents came over to spend time with Jillian and help out at the house. After I got done with work my parents and Dan come over. Dan spent the night.

Saturday:
Brent woke me up with waffles! Yummy! Jillian decided to sleep in til 8am!!! She peed through her overnight diaper she slept so long :) We started cleaning up around the house and Brent and Dan started outside. In early afternoon Brendon, my parents and brother came over to work on the house. We ordered pizza for dinner and mom and I ran into Lake Geneva to pick it up and go to walmart. After dinner Brent's dad brought out things for the party. The boys had a bonfire and mom and I worked on putting away Jillian's laundry.
Jillian's allergies are really bothering her. In just running to walmart her eyes puffed up again. Poop baby. She has a cough, runny nose, and still has a little goo in her eyes.
In the morning she had a blow out diaper. One of those to her hair poops! 

Sunday:
Up and at it early! I went to put the news on while Jillian was sitting in her Super Seat. There were racing cars on instead of news so I started flipping channels and came across Curious George. Jillian about jumped out of her seat when she looked at the monkey. I figured I would let her watch it for a little while. We don't normally let Jillian watch TV but this was just too cute! As we were about to leave Jillian pooped again. I took all of her clothes off before I laid her down to avoid the poop leaking out when I laid her down. Thankfully this worked and I did not have to find new clothes.
We headed off to church and Jillian loved watching grandpa play guitar. After church Brent went with Jillian back to the house and my mom and I ran to the store to pick up some last minute things for the party. We got back the house and Brent's parent's, grandparents, brother and Dan were at the house getting things ready. My dad and brother joined us shortly after they got done at church.
The party started at 3 and people started arriving just before 3. Around 4pm it started to rain and most people moved into the house. This worked perfectly because around this time Brent came to get me. We had a problem... each time someone flushed the toilet, poop water flowed into the backyard! I was so grateful for the rain at that point because it got people out of the yard. The party went on like nothing was happening other then a little rain. We did not want to spoil the fun for everyone.
During the party my mom hung out with Jillian. I am not a fan of the game pass the baby. It is too easy for the tube to come undone and leak everywhere. Also, she is already fighting an ear infection, and allergies and the last thing she needs is to pick something else up.

Working to get anything in the line

When we were cleaning up from the party Brent went to give her meds in her tube. He started with a water flash like normal but he could not get the water to go in at all. He would push down on the syringe and water would fly out everywhere. I came over and gave it a try. We tried different syringes, temperatures of water, and all the other tips we have gotten from GI and nothing was working. I called Dan's mom to see if she had any ideas and she said we needed to get her seen. I called the hospital and they paged the GI fellow on call. They called me back and said we would need to come it to try to get it unclogged and if that did not work we would need to stay the night and wait for morning to get it changed out. We started packing our things for the hospital stay and to stay at my parents until we could use the bathrooms at our house again. The packing was more like throwing but my mom helped us get things together and we got out the door kid of quickly. We left the hospital with people still in our house and instructions with Dan of what needed to be done before he locked up.
When we got in the car my mom called my Aunt Sandi and told her we needed prayers that they would be able to unclog the tube. Part way to the hospital my gas light came on so we stopped in East Troy for gas. I told Brent to try it one more time and he pushed a little and it started to go. We were able to flush 10ml into the tube! Whatever had been clogging the tube was gone! Since we no longer needed to go to the hospital and we could not go home we headed to my parents. My dad, brother and Dan met us there and we all hung out for a little bit before going to bed.

Monday:

Helping make pancakes

We woke up and my dad was going to make us pancakes however he did not have enough eggs, flour or milk to do make them so my mom and I ran to walmart. We picked up the food and some bottles that have the same nipple shape as the passy she loves to see if she would drink those better. We came back and dad made us all pancakes. After breakfast we ran to Ann Taylor quick since they were having a big sale and I am working on building up a new wardrobe since my clothes are too big. I got into a size 4 pair of pants!!! We also hit Carters since they had up to 70% off! Jillian got a few new things in bigger sizes :)
We ran to Target to pick some times up quick. Mom and I were checking out the clearance and came across the base for Jillian's car seat on clearance. Someone had returned it from an online order and it was over 50% off. We had been looking for a base for Brent's car for a while but no one was selling them or they where really expensive. I was so excited!!!

The roommates! Dan is moving back in

We decided we would do dinner together as a family since my brother is leaving for New Hampshire for the Summer on Thursday and we are not all going to be together between now and then. My brother mean a lot to me. We have not really been the fighting siblings and have gotten along so well. He is an amazing brother. When our heat went out in January Seth came over and helped me with Jillian and dealing with repair guys. He is very protective of his big sister and niece and would do anything for us. We almost lost him this year. He got very sick in November and almost died. The doctors told us that if he had not gotten to a hospital when he did he would probably not be with us. We call him and Jillian our little miracles.
At night Brent was holding her and she pooped. He changed her quick and put her in pajamas. He picked her back up and they were playing again and she pooped a second large poop. Hopefully she is starting to get some out! We all thought it was funny though! We tried Jillian's new bottles. She still only took 1/2 of the water :( We will keep trying

Tuesday:
Brent, dad and  mom had to be at work. Jillian and I slept in a little. I gave her a water bottle with one of her new bottles and with a little coxing and work she took it all!
I called the pharmacy because her laxative is suppose to be a 30 day supply but I picked it up on the 13th and it ran out this morning. With the amount of measuring we do I knew we did not mess up that much. I called and they said that even-though the bottle said quantity of 30 2.5ml doses there was only 12.5 days worth in the bottle because they only put 12.5 days worth in the bottle. This is a problem on multiple levels. First, I now have to pay again to have it filled for the rest of the month. Second, my insurance only pays for 3 fills of the same prescription a year at a store. The rest we have to do mail order. This now counts as one of my fills and we dont see GI until the 7th to get a prescription to mail in that will still take a week or so to get filled after I mail it! GRRR!
I also called med supply. On the 1st of the month we got 30 bags for her pump. This is a 31 day month and the 1st of June falls on Saturday so I need more bags this week. I called and the lady asked why I would need more bags now since I ordered at the 1st of the month last time. I explained the math and she said I can only have 35 bags in 1 month and I can not order another months worth of bags until the next month. She said she could ship me the 5 bags left that
I am able to have this month and then next week I had to get a delivery of the 30 bags for next month! GRRR

When I left the room she was on her belly

This morning the guy came out to pump out our septic to see if it was just full. He pumped it out and said that the septic system had a problem and we would need to call someone else to fix it. We are now waiting for them to come out and hoping it is not a big costly problem.
This morning Jillian spent some time with her uncle Seth. He had to leave and said goodbye to her and she started uncontrollably screaming. She is going to miss him a lot!

Well, I'll keep you updated on the backyard poop situation, and the Jillian poop situation... and those silly bags!

4 Months Photos

Jillian is only 5 1/2 months old but I finally got a photo collage together of all the pictures when she was 4 months. She spent part of it in a hospital so many of the pictures are from there. Enjoy!

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