Advocating April

 One of the biggest things I've learned after having kids, especially Dot - was to speak up and advocate for my children, myself, my friends and loved ones. 

Dot at her most recent MRI. We have them yearly due to her CVR surgery at 11 months old. More coming in that in the future!

I didn't know when I was asking the nurses and doctors in the NICU, that what I was actually doing, was advocating for my child. 

When our primary nurse (who I simply loved) commented on how involved I was with Dot while she was in the NICU, it kind of struck me as odd to be honest. Doesn't every parent question what these doctors and nurses are doing to their kids, and why? 

Dot was a mystery case for the first two of her almost three month stay. At a certain point it's almost like some twisted Badge of Honor - MY kid is the one y'all can't figure out? Sounds about right. 

She was chuffing when she was born, so I told my mom who was holding her as I was on the operating table - that something didn't sound right. Dot had already been cleaned and bundled up. Of course she was crying as every newborn does, but something didn't sound right in her cry to me. 

The nurses took Dot back over to her little baby bed where she was cleaned, and began working on her again. I didn't see Dorothy for about 8 hours after I had her - right before they took her in the incubator covered in wires and tubes - to Dell Children's.

Things happened so quickly, that I didn't get a chance to even hold Dot on my own. 

I held her for the first time ever in the NICU, at 12 days old. My mom was officially the first of the family to briefly hold our baby girl.

We were separated in two different hospitals at this point.

 My pregnancy was textbook. Dot was delivered via repeat C-section at 40 weeks and 1 day. We were definitely caught off-guard by the events that transpired once we had her. 

I ended up signing myself out of the hospital that I was at, 24 hours after having my second C-section in less than 2 years. (I don't advise this, ladies! Wait the full 18 months for your body to heal before popping a mother bun in that delicate oven!) 

The nurse who was watching over me at the time, made sure that all of my medications were being filled at a pharmacy near Dell Children's. I donated the beautiful bouquet of roses that my dad brought me, to another new mom - and bounced to see my Dottie at the hospital she was in. 

Having your kiddo in the NICU, without warning, for the first 3 months of their life can really throw your plans for coming home into chaos. 

I learned while she was there, to ask questions when I wasn't clear on what was happening. To even question the doctors. If we started her on an antibiotic IV for something we think it is, but aren't seeing the results we're looking for - why is she still receiving this antibiotic? 

That question got her taken off a medicine that she didn't really need in her little body. I have no problem with throwing every solution at a problem, but if it's not working, we need to move on to the next thing. 

I trusted the doctors, and knew she was in good hands. Dell Children's Medical Center has some of the best pediatric doctors in the U.S.

I also knew that it's my job to keep an eye out and make sure she doesn't fall through the cracks like so many kids do who don't have someone advocating for them do. 

Advocating I think really came from this experience having Dot. Her being in the hospital, and my not always understanding what's going on or why. I learned to speak up. I learned to ask questions. I looked online for diagnoses and solutions to some of the issues she was having - and found amazing information on my own, that the doctors agreed we could try once she was a little older. 

There's so much more to say about Dot. How brave she is, how smart and empathetic and loving. I'm happy we've come as far as we have, and I'm not sure we would be where we are had I never learned to advocate for her. For myself. For my family.

 If you're going through something similar, please know that you're not alone. 

Ask your questions. Don't give any fucks as to if you're "annoying" a doctor or nurse. It's literally their job to answer your questions and listen to your concerns and address them. If they're not, you have a bigger issue and need a second opinion. 

I love a doctor who listens to me, as a mom. I will always firmly believe that I know my child best. I know when something's off (I'm the one who called that there was an issue with her breathing at birth.) - I know that I must speak up and make my voice heard. 

I learned when rounds happened with the doctors, and was present every day that I was at the hospital for those. Rounds is the best place to get your questions and concerns addressed by the doctor, who you may have somewhat limited access to during the day.

I'll do anything for my kids, including advocating for them when it's needed and I know you can do it too!