Long. Sad. Sorry.

Amber • 26, married my best friend 7/14/14, tried for almost two years and now mommy to Lyra Jane, born 12/15/18!

Lyra was born on December 15 at 37 weeks, 6lbs11oz and absolutely perfect. At her 1 week appointment, she had lost weight and went down to 6lbs4oz. Her pediatrician suggested I pump more and give her a bottle. I did that.

At her appointment a week later, she only gained an ounce. This was the pattern for 6 weeks. During that 6 weeks, I noticed every time I lifted her legs to change her diaper, she would scream. Not cry, scream. For 6 weeks I brought it up to her pediatrician and he said she was just a stubborn baby that didn’t want to stretch.

At her next appointment-7 weeks old- still no improvement in weight gain.

She was hospitalized. They told me she possibly had pyloric stenosis because she had awful vomiting spells. Think the movie Exercist. The hospital did X-rays and blood work and we prepared ourselves. What they found, we could never have predicted.

My daughter has Infantile Hypophosphatasia. An incredibly rare, genetic bone disease. Her body cannot grow bones properly. She would scream because her hip bone was jagged where the bone had not properly formed.

We are now 5 and a half months from her birth. I give her 3 shots a week, she has a feeding tube, two medications 4x a day (used to be 4 medications 4x a day) and she sees 4 specialists every week. In 5 and a half months, she’s only grown less than 5lbs. She will be on these shots for the rest of her life. Without them, this disease is fatal.

I have been strong for her. I give her shots, I put her feeding tube back in when she pulls it out, I give her all her medications and I make sure she’s getting fed every three hours- round the clock.

I’m exhausted,but she needs me. My girl is beautiful and perfect in every way but she’s tiny. And will be probably her whole life.

I don’t know what my point of this post was but I just need to feel like I’m not alone. Like my world isn’t caving in. Please, someone talk to me.

Edit: Thank you everyone for your words of encouragement, I really was in a dark place when I posted this. Every now and then I will have a breakdown and will need some help but I had to learn very quickly to ask for help when I needed it. It’s extremely important to surround yourself with support and that’s what you guys have been. I’m forever grateful. ❤️