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.

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!

I'm 4 months old... thus I can do what I want!

Jillian turned 4 months old Sunday! Hard to believe that my baby is that old already! She decided that she wanted to give herself a gift... no tube for a few hours. We were at church Sunday morning and Jillian decided it was scream time. We ended up spending most of the service in the hallway instead of in the service. I was walking with her trying to get her to sleep. She was almost asleep when she started to cry again and throw her body in reflux pain. In her flailing she got her hand under her tube and pulled it out. I then had to get all the tape off and clean up the mess. Thankfully I had some helpful people around!
We put the tube back in her in the afternoon with the help of my parents. Each time we have needed to put a tube in they have been with us so we have gotten into a routine. It probably looks a little like hog tieing a cat on the dinning-room table.
Jillian has gotten into a lovely patten of choking around midnight. At that point she has been on the pump for 4 hours. I am not sure what about this time is causing problems but I have been waking up each night with her then. Some night are worse then others and some nights she has some regular coughing mixed in there too that sounds like a dog bark.
Today we went to the doctor for her next shot. She was up to 12lb 9oz. She got the Hib vaccine and really did not care about it going in. She was more upset that while we sat there for 10 min after to make sure she did not have a bad reaction immediately, I tried fixing her tape. Since we changed her tube on Sunday we have not gotten the piece of tape by her nose just right so they keep falling off (we use duoderm by her nose) and I wanted to fix it when it started falling off so we did not end up putting a new tube in again. I ended up having to redo it again in the car before we left because the replacement was already falling off. I think I have it good this time... hopefully! She ended up eating her 11am bottle in the car too before we left. We had a 10am appointment but the Dr was not in today and they had a hard time figuring out what shot she needed today since she is running on her own timeline so we did not get the shot in until 10:40, and then wait in the office around 10min to make sure she is ok and it is time for her to eat. There is a part of me that is hopeful that part of the screaming in the doctors office was for food because she has not seamed to be very vocal about wanting to eat lately. She would be ok with sleeping through some of her meals if we let her, so while I don't love the hear her cry there is a part of me that is grateful when she asks for food.
I want to put a big shout out to all of the people who have done there best to make our lives a little bit easier lately! Some of you have gone out of your way to do kind and helpful things for us and it is truly appreciated! It has been amazing to have someone bring us dinner in the mix of crazy dr appointment schedules or come over and wash a few dishes.
We are not currently at a point that we feel ready taking Jillian out while she is hooked up to the pump (we will get there) so it is amazing when people are willing to come to see us, or eat dinner early so we can be home in time. We appreciate it so much when we don't have to explain over and over why something or a situation has to be a certain but when people just roll with our craziness right now. Through all of this you really find out who cares about you and who has your best interest in mind. I have felt a little guilty lately that I have not been able to be as involved in our friends lives as I would like or that I have not been as emotionally available to others. I really do love my friends and I am grateful for the forgiveness that some of you have had to extend lately when I am not able to be as good of a friend as some of you deserve. But like Brent said, our true friends and family really love us enough to love us where we are right now and walk the journey with us and do not judge us and for these people we are more grateful than we can express!

Jillian with her giraffe friend this morning. She liked eating his feet!

Our next appointment is with GI this Friday but until then I am going to cuddle up with my little girl with her shot and love on her. I might also try to get some cleaning done..... maybe!