My Dear Daughter

 

Dottie's NICU room door at Dell Children's - our home for 3 months. 

I talk a lot on here about Dorothy being medically fragile and special needs, but it occurs to me that some of my followers are fairly new. Not all of y’all have been following me for seven years, so I’d like to give you a little backstory on what’s going on with Dot.

When Dorothy was born, she was a repeat C-section. I have never gone into labor with either of my children and I was perfectly happy to have a repeat C-section. 

I noticed after she was born that she was having some trouble breathing, so the nurses took her back from my mom who was sitting right beside my head holding Dorothy, and started working on her.

Seeing Dot before they transferred her to Dell Children's without me. 

Within about 8 hours she was transferred to a hospital with a higher NICU level that could handle her specific needs. At the time, they just thought that because she was a C-section baby, she still had fluid on her lungs and was having a hard time getting the fluid to drain.

After two months in the NICU on life support, a seizure due to an error at the hospital, an EEG, an MRI, we finally got a diagnosis for our mystery baby which was ✨panhypopituitarism✨.

For us, that simply means that her pituitary gland did not grow correctly.

My first time seeing Dot in the Dell Children's NICU. They decorated her bed with a lovely little heart blanket and I thought that was so sweet and precious. 

She will forever be on medication to replace what her thyroid does not make. She takes growth hormone shots six days a week to replace the growth hormone that her little body does not make, and she takes hydrocortisone to replace the natural cortisol that our bodies make.

She also has an emergency shot for trauma or sickness because her body does not protect itself we have to do that for her.

Panhypopit is a life-threatening condition, it is for life, there is no cure.

I hope this helps clear up any confusion and I’m ALWAYS open to answering questions & giving a shoulder to cry on - because I have been there & I do know what having a medically fragile/special needs kiddo is like. 💕

The first time I held Dot at 12 days old. 

 

Dottie napping on her tummy in the NICU. Tiny feets. 

You can follow Dot’s story from the start at #babygirlbogus over on Instagram, if you like.