I really don’t expect anyone to even comment back to this. There is just so much I need to say and I have no one to talk to, so I thought I’d air it out here.

I’m hurting. Hurting so badly! 5 months ago I went into labor and thought everything was going to be perfect (even though it was 5 weeks early, my daughter was still a healthy weight and I’d had no issues during pregnancy).

My water broke and 7 hours later I only pushed for an hour. Seeing my daughter for the first time was a life changing experience. She was so beautiful to me but I could tell something was wrong. She had a huge tongue and large birthmark across her whole forehead and eyelids. She was severely bruised and swollen from her journey on the way out.

They laid her on my chest only for a few seconds and laid her on the table, screaming. They took her away from me because she wasn’t breathing correctly. Everything happened so fast that I didn’t have time to think about it or get upset about it.

They’d told me she was on oxygen and when I finally was able to go see her, it broke my heart. She was hooked up to so many machines. Everything happened so fast after that. She was being transferred to a nicu 2 hours away, she wasn’t breathing right, her tongue was big and with the birthmark could indicate an illness. Information was spewed so fast at me I couldn’t keep up. They wanted to keep me overnight but I demanded to leave and follow the ambulance she was in to the hospital 2 hours away.

Once we arrived her room was flooded with nurses and doctors getting her set up. My papers were shoved my way about prematurity, her possible illness, etc etc. I went into labor at 9am that morning and by this time it was 3am. I was running on fumes but I had to make sure sh was ok.

The nurses urged me to take the room they’d given me a few floors up to get rest, considering I’d given birth a few hours earlier. I agreed and everything hit me the next morning when I woke up. I thought her nicu visit would be quick because she wasn’t that early, but a few days turned into a week. A week into 2. 2 into a month, etc. we waited on her genetic testing results to find out she had a rare genetic disease. The indicators her oversized tongue, birthmark on her face, and creases in her ears.

It wasn’t lifelong, only until she was 8. But tumors were a side affect. So her life for the next 8 years would be constant bloodwork and ultrasounds to monitor that she wasn’t developing any and if she did, to catch them early. She went through surgery and then her tongue held her back from feeding properly.

I cried everyday. I think I had postpartum but I didn’t know. I hid behind her room curtain and cried, I snuck to the bathroom to cry, I cried in the shower. I cried on the 2 hour drive back home because I couldn’t afford a room at the hotel attached to the hospital anymore.

I was angry. PISSED. I saw my friends on Facebook having babies and going home the next day. Why couldn’t that be me? Why did this have to happen to my baby? I was SO HURT. I looked at her and it broke my heart. I felt like a bad mom. I didn’t even feel like a mom. Even though I helped, nurses took care of my daughter for her first weeks of life and that tore me up. I went home every night to her empty room and cried. But you know what I did when someone asked me if I was ok? I said yes. I’m fine. And plastered on a smile because I didn’t want any one to know I was hurting. I wanted to be strong. Maybe it some eyes my daughter had it easy. Only a month in the nicu!? No problem. Some babies spent so much more time there. I felt for those parents because just a month absolutely destroyed me. Even now I can think about it and feel a pit in my stomach and want to cry.

I look at my daughter now. She is so perfect to me. But will other kids see her how I do? Or will they pick on her for the marks? Or her tongue? She is so perfect and beautiful and I never want her to feel that way. I want her to feel how I see her. Beautiful and strong. But kids are cruel. Everybody knows that.

And the ultrasounds and bloodwork and endless lists of specialists weigh so much on me. I feel like I’m drowning trying to play catch up treading through water. She hates the appointments. Every single one she cries through and she’s only 5 months. She’s got 7 years and 7 months left of this. How can I be strong for her? Sometimes I feel like I can’t keep going. I watch her smile and giggle and everything feels ok. But then when she goes to bed and I’m alone I feel suffocated.

What if one of the ultrasounds come back with a tumor? What if the overgrowth syndrome affects her limbs? What if her tongue inhibits her ability to start solids? What if she needs a tongue reduction surgery? What will I do then?

I’m sinking and I don’t know what to do.