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.