Brown and Pink Polka Dots : How are the girls?

We are chugging along here :)

Jilli:
Her lungs still have not been so happy and has been needing nebs but this morning her cough is not as bad. What is not all that great is her reflux. Her therapist commented on Monday how much worse her reflux is since surgery and all of us who spend a lot of time with her agree. To the point she cycles her Erythro of 3 weeks on and one week off and she just went off on Thursday but I went and picked it up yesterday and started her back on it early to see if it would help. She was audibly refluxing the entire time we were at the pharmacy. GI called yesterday and asked how the girls were doing (I was protesting calling them for a few days, the girls were safe on the plan we were following and I need a couple of days without fighting for the sake of my blood pressure, so I just waited until they called me) They asked how Jilli is doing and I explained that we feel she is worse. Now they are saying that can happen with botox before it gets better but offered no suggestion of how long worse might last. I sent a message to my friends over at Feeding Tube Awareness last night to get thoughts from other parents who have been there and they are all shocked that they put Botox into Jilli's pyloric valve without there being a problem with the pyloric. No one had any experience of it getting worse before better. I spend my afternoon reading case studies (yes I read medical info about things that is going on with the girls so I know what the doctors are talking about) and could not find any info about Botox making things worse before better. Brent is hopeful that it will magically start working... I guess I am being more realistic at this point. I'm frustrated. Jilli has been enjoying her Barbie house that she got from her grandparents on Monday and has been playing with it with her Barbies.

Lydia:
Lydia's tummy is healing nicely. The pain seams to come and go, but my tummy hurts for a while too when they cut abdominal muscle. Today the tube in her nose is really sensitive and I wish for her sake that we can get it changed to a GJ tube soon but when I talked to GI yesterday the nurse said Ir is saying she has to be 7.5kg to get a GJ but they are going to see what they can do. I am starting to feel more and more like we are not getting it until at least 7.5kg :(

GI also asked if we have fed either of them into the G. This is where the huge disagreement is right now. Lydia is still choking... it is a TON better then before surgery now that her stomach is draining into a diaper but not 100% fixed (I was not expecting it to be 100% fixed, I am happy with the improvement that we have seen and I feel like Lydia is a lot safer with the level of choking we have now in comparison to what she had before surgery) She is still choking and refluxing, so why would we feed her into the g? And the whole point of the surgery was so that we could drain her g but if we are putting formula into her g then we can't drain it because then all her food would drain back out. Feeding into the g was NOT the point of the surgery so I am very confused why now after the surgery that is something they want to do. Jillian's reflux is worse since the surgery, why in the world would we feed into the g right now when she is not handling her own saliva? I get they need to see if the surgery made things better but I can tell you as of right now it did not without putting anything into the g. The nurse said that she would share what I said with the dr and someone will call me back. I'm just so confused by this. The girls thrive on J feeds with venting the g. They grow, it lowers the risk to their lungs, they reflux less, and choke less... why try to change something that is working? I get that so many people see the tube as a negative thing, however we see it as a huge blessing that keeps our kids alive. We are not one of those families that is begging to get the tube out. Our kids are able to do all that they do because of the tube. Without the tube they would be very sick, not growing and likely living in the hospital.

A few people have asked about second opinions and such and I really don't feel like that is a good option because:
1. Doctors are human. Our relationship with our doctors is like any relationship, there are times of frustration. We will get through this and we all will be stronger in the end. They will learn more and I am learning things too. Is this process fun? no, but jumping ship every time someone makes me mad does help build relationships or help the girls. We are working with other humans thus there are going to be times of frustration.
2. We are at an amazing hospital. There are so many people there that care about my girls including the people I am frustrated with. When I look at things that happen at other hospitals we are blessed, and some things that we get frustrated with happen everywhere... once again, the medical system is run by humans... do you ever have a bad day at work?
3. We did get second opinions for genetics and neuro in February and they said that CHW is doing the best things for the girls.
4. There is no book written on how to treat an unknown genetic disorder. We are all making educated guesses. There is no treatment plan to follow. Sometimes guesses will be wrong and that is why it is my job to research what I can so we can have educated conversations with the doctors.
5. Sometimes other forces are involved in situations... bosses, insurance companies, other departments ect. While no one has said that with this situation, sometimes that is going on in the background.
6. These doctors have been with the girls since the start and having a history with a doctor is not something you can pay for, its built over time.
7. Despite this I still trust our doctors, and know they want the best for them, if that feeling changes we will do something about it, but there is something about a momma's gut.

We had a guy come and work on our AC this morning. We were trying to see if we could coast by without by the girls overheated yesterday with the doors open and fans running so we didn't have a choice. Thankfully we didn't have to buy a new AC... some lovely mice decided to build a home in it and broke one of the parts but they fixed that and cleaned out the mouse home. The house is already cooling off which is amazing.

Yesterday the girls and I went to Target and they had a ton of their character stuff and back to school dollar section stuff on clearance so we picked up stuff for Ronald McDonald House. Our last day there they gave Jilli a backpack of stuff to play with while her sister was in the hospital and it was full of little things like that. Jilli was so excited to be buying stuff for rmh! If you check out their website they have a donation list of things they are always looking for.

I was also in contact with CHW this week about bouncer and mobiles for kiddos on the 11th floor. Watch for details in a month or so about how you can help us with that. Our goal is to buy them 4 bouncers and 2 mobiles. They use a specific bouncer that runs around $25 each and the special hospital mobiles they use run $100 each. So we will need about $300 to buy what we are looking for. Any extra we raise for this project will get more bouncers and mobiles. Contact me if you have any questions.

Thank you to everyone who prays for us, loves on us and supports the things that we do to give back to the places that give so much to our kids!

Note to add: I just got the mail and found out our insurance denied the claim for the Botox... Ahhhhhhhhhhhh