Trusting my Instincts

Since becoming an un-certified nurse to Lily Belle I have had to learn to trust my instincts as a mother. I've also read up on all the research about SOD, PHP, DI etc. Lately I've been having to remind myself of my capabilities. The Magic Group (a growth hormone deficiencies support group) started facebook groups for each growth hormone related condition. I had to join both the SOD and PHP board since we kind of straddle both though Lily's php is caused because of the SOD...well, potato pa-ta-toe.
Anyway, since joining I've learned so many amazing things and met so many amazing people and mothers of other children with similar conditions. I've read stories of people worse off than us and people that aren't "so bad." I've also had to question myself, Oh, they're giving this medicine at this time?  or things like their doctor said not to get the medicine compounded? The list goes on and on. All the questions running through my mind. Questioning what we're doing, if it's right. How can it be right when their doctor says not to do it? Or to do it this way? Or to give this much?
So I have learned to take a deep breath and remind myself to look at Lily Belle. To really look at what I've done this past 16 months. The fact that my daughter is growing, healthy, super smart, sleeping, eating, talking, walking. I think it's just Lily's personality to forge ahead, to not let anything hold her back but there's also a big part of me in this progress. My heart and soul, my sweat and definitely my tears. My education, my research, my bugging the doctors at all hours. My gut instincts. Whatever I'm (and our doctors) are doing for LB is working. And I need to stop comparing.

This also goes for our actual doctors. They are not with Lily everyday. They see her for 20 minutes every few months. They rely on me to let them know how she is doing. And this past week I really had to put that to the test.
Last week we got Lily's sodium tests done and it came back PERFECT. We had not had such a good reading since starting the ddavp. I think this is in large part to Dennis and I giving her water or juice whenever she asks for it. Now, this is something I learned from the boards, that I should give her water when she asks because there is nothing more dangerous than a baby with DI getting dehydrated and her sodium rising all because I refused her water. I have to believe she is asking for it for a reason. She's thirsty!
So, perfect sodium results. Yet Lily has been asking for more and more water, even getting up a few times at night crying for it again (my red flag) and soaking through diapers, mostly at night. So we called Dr. P (endo) and told her. I also had Dr. S (pedi) in my ear telling me to watching LB clinically, that even though tests can show good numbers, that if she's up at night crying for water and soaking diapers then maybe something's up. So Dr. P hesitantly told us to go slightly up on the meds. (from 2ml to 2.2 haha) But it worked! And Lily slept all night and only had her cup of milk at medicine time.

I feel like I'm still learning and will always be learning but I've also come a long way since last May and I should pat myself on the back for how far we've all come in keeping Lily alive and healthy :-)