Was not expecting that

Ever have a day where you feel like a curve ball came out of left field and you squarely caught the ball... with your stomach? Well thats today...

Let me give you a little back story first...

Jillian's first hospitalization was when she was 2 months old. She was hospitalized for vomiting. During that hospitalization the GI doctor on for the week made a visit to the room. Everyone was thinking she had a virus or something along those lines so GI said they could not do much to help us then but that she wanted to see Jillian in clinic a couple weeks later because of Jillian's weight gain issues.

A few weeks later a worried mom brought her tiny baby to their first doctor appointment ever at Children's (I had been seen at Children's for about 4mo when I was 16yr old but otherwise it was just the place you watched commercials about... ps did you see the cute kid with the NJ tube on the latest Children's commercial, that would be a video of Jillian when she was 4mo old)
I was nervous. By this point we knew something did not seam quite right with our kid we just had no idea what was going on though. That first doctors appointment set our tone for Children's. They were helpful and explained things and listened. I left that appointment with a plan (this was when we started fortifying Jillian's milk... I thought the price then was crazy... if I only knew!)
We went on to see this GI doctor about every month of Jillian's first year. She attempted Jillian's first GJ tube surgery (which did not work, but that was not her fault) and celebrated with us for each tiny weight gain, and listened to me as I voiced my concerns. After the first year we have spaced out her visits a little bit more, but they are still very regular.
The office staff has become family. The ladies at the front desk fight over who gets to weight Jillian. Our old dietitian comes back to visit us even though she is now assigned to a different doctor. Our current dietitian plays silly games with Jillian and helps fight along side us to get Jillian the formula she needs. We painstakingly calculate each drop of fluid that goes into Jillian and try to work plans for the best ways to help Jillian grow.
The nurse is AMAZING and has helped in so many ways. She has gone above and beyond what she has had to do and made Children's a welcoming place for us. I can not say enough good things about the nurse and everything she has done for Jilli. From taking my calls when something is not right to celebrating victories with us to checking on us when we are in the hospital, the nurse rocks.
Obviously you can tell I feel very passionately about this team. Not to say we have always had the same ideas or have not had to work things out a few times, but they are like family. They truly care about my child and that shows with every choice they make in regards to her care. Want to know why we feel so passionately about giving back to Childrens and why we do the walk... this team is a large reason why.  

So we went to Jillian appointment today in GI. The nurse was in a meeting so she was not there. A different nurse was filling in, who was really nice, just not our nurse. The dietitian came in, Jillian gained a little in height but lost weight... we decided though that we are messing around a lot with her respiratory system right now and that it is not a good time to mess with her feedings. Thankfully we have worked together long enough that she understands how we have to look at these choices for Jillian and that we can only mess with so much at a time or her body just shuts down. We agreed that we would look at it again in a few months and see how it has leveled out after being on oxygen for a little while and then if we needed to we would make adjustments. I am grateful that we are able to work together to make those choices.
Then the doctor came in. We talked for a little bit and she told me that Jillian has moved past her level of care and needs to be transferred fully to the motility clinic for her GI problems. This is a smart doctor, who I respect a lot, and she just told me Jillian's health needs are now past her level of care. As a mom that hit my heart. She said that she and the GI motility dr talked (the dr we visited with last month) and they are both concerned about Jillian and that her case has become more complex. It is one thing to know your kids medical stuff has not been looking great lately... it is another thing for a doctor who has seen your child from the start to say it.
She told me that it is not that they want to get rid of us and talked about how much they love Jillian and how much we have all been though together, but that this was the best choice for Jillian because this is the level of care she needs. I think this was hard for her too. She has been there from the start. She talked about how as Jillian gets older more things are coming to light and things are not resolving like everyone hoped and now the fact that oxygen is in the mix changes things.
This is our little family there...
Jillian's GI care will now be transferred over to the GI motility specialist we had a consult with last month. I really like her and I know she cares a lot about Jillian too. We met her over a year ago and she has been in and out of Jillian case, up until this point just as a consult on tricky things or for tests that a motility doctor had to run. I do like this new doctor... she is great, it is just the admitting that she needs the next level.
The dr today mentioned maybe running all the the motility testing again to see what has changed over the last year we can compare because obviously she has a GI motility disorder. She also asked about genetics and what is going on there. I think her doctors are getting frustrated that we dont have more answers there yet.
It is also leaving our little GI family. The nurse in charge of Jillian's case will change. It will most likely be a different dietitian as well.
Change is hard.

I know to some this probably sounds like I am being really dramatic, and yes, we are still getting our little girl amazing care at an amazing hospital with a great doctor, but when you rely on doctors as much as we do, it is hard to change from someone who loves your child the way this team love our little girl. It is also hard to admit that her level of care needed has changed.
When you are a parent to a child with special needs with an unknown diagnosis with and unknown prognosis, you don't have things like a big appointment where they tell you what is wrong and what the plan is, you have these little, yet big in their own right, appointments that show the layers to whatever this unknown thing is. It hits you. This is one odd messed up way to raise a child. Honestly today after that appointment I would have probably bought Jillian whatever she wanted, however I knew that would not help any of these feelings, but I just wanted to do something.

We are blessed though. We are blessed with an amazing hospital. We are blessed with so many people that love and care about our child.We are blessed with one AMAZING little girl who lights up the word with her smile, gives the best hugs and the silliest kisses. Despite all... we are blessed.

This choice was not made lightly though... it was made out of love for our little girl, and we will see what is in store next in her little adventure... this afternoon it was the ZOO!

The first ride on the zoo train of the season. She loved it and smiled like this the whole way

The floor in our train car. The stroller clip made it easier to carry the oxygen and feeding pump at the same time. She also popped her medport while she was waiting for the train to start... pour train car got a little Elecare bath