Formula, A New/Old Friend and A Breakdown

There's so much to write about. I think about things that I want to write about all day and then when it comes time to put it all down I feel at a loss for words. So bare with me - my thoughts are all jumbled.

We'll start with the ole nemesis, Formula. Ugh. So we tired the powdered stuff in the hospital. She took a few sips, kept it down. So the next day we gave her a half of an ounce at a time, ended up coming to one full ounce after nursing. She then took a nap. Then we were discharged from the hospital! So we decided to nurse her before getting on the road. Well...She puked ALL OVER ME while still nursing...fun. And Dennis had just taken the clothes to the car. So he had to run back and get me clothes but mom had taken a lot back with her to lighten the load so I had no more nursing tank tops which meant no bra! yay. So I tried feeding her 2 mores time, got thrown up on 2 more times.

At this time the nurse is concerned, pages the doctor, who convinces us to wait it out a few hours to make sure she can hold something down and to make sure it's not a GI bug she picked up in the hospital. Lordy lord. Well she kept two nursings down fine, thankfully, and we were able to leave at 5pm. Damn formula.

So I asked around, and asked my pediatrician today. She gave me a sample of a similac formula that's more "broken down" and easily digestible. We're going to try that tomorrow morning to see if she can hold it down better. If not that, then in a couple more days we'll try soy formula, which I also ganked a sample of at the doctors.

Now, I know I wasn't so keen on formula. So why am I trying so hard to get her on some? Well, It would cover 2 bases - her water intake (3 ounces a day) and extra calories that she needs to bulk up.

Speaking of which, today she was 9lbs 12oz and 23.5 inches tall :)

I'll keep y'all updated on the formula challenge.

Now onto my new/old friend, Kate. Kate and I grew up together in the same neighborhood. We rode the same bus, swam on the same swim team and went to the same schools. She now lives in Alabama, I think, and has a daughter that is 2 years old. The day we were diagnosed with SOD I lay in bed thinking about everything, and wondering who was going to understand this? And for some reason Kate popped into my head. Now, we were never that close as kids. We don't talk much now. The only reason I thought of her was good old facebook. I remember seeing that Kate also had a daughter with a disability. She was the one that posted the "Welcome to Holland."

Anyway, I wrote her a very awkward message. I wasn't quite ready to share our diagnosis with anyone. I didn't even know if Kate and her daughter had something similar or not. She got back to me a few days later and I was stunned. Her daughter doesn't have SOD but something very similar called Optic-Nerve-Hypoplaysia. Her challenge is more about vision, where Lillian's is more about the pituitary/hormonal side of things.

But I just felt a huge sigh of relief. We weren't alone. We weren't the only ones dealing with something like this. She's already shared a lot with me. Her daughter was diagnosed right around the same age as Lillian and she is 2 years old now and happy, healthy and functioning normal despite her vision impairment. I am so grateful to have her in my life even just through the internet. Thank God for Facebook!

Which brings me to my last point. Kate has sent me inspirational things, like the Holland story. She's also sent me some things she wrote when she first found out about her daughter's diagnosis and I'm so thankful that I'm not alone in my feelings of sadness, anger and disappointment. But she is also at the point of acceptance. And though I pray for it I just can't imagine accepting it. I know it will come. It's those darn stages of acceptance or whatever. I'm stuck between being very sad and very angry.

And I hate being angry. But I can't help but think about all the things I had planned for Lillian and all the things she may not be able to do. And yes, I know, "may not" is the key. I'm also angry at all the people with their normal babies (no offense!) But I don't want to be around any of you right now!

And I can't help but think, WHY!? There's no reason for this. No cause. No blame. It just IS. And that makes me so angry and so depressed. And Dennis is handling it all so well. He's very good at focusing on the present. At making himself focus on the present. He tries not to dwell on the past or the future of things. He tells me it makes him stressed.

But me. I can't help but replay the night that I found her in her crib having a seizure. I can't help but think of her not waking me up and me sleeping peacefully while she seized. I can't help but think of all the times she didn't feel good because her hormones weren't working right and how I just thought she was "laid back" or tired, or fussy. Of all the times that she went 5+ hours without eating and how low her blood sugar must of been. How did she go so long like that? And how could I have not have known?

And I can't help but replay them telling me the diagnosis. Of me getting to my breaking point in front of the last doctor and just squeezing my eyes shut so tight. Of sobbing. SOBBING. Not crying, not the silent tears down the cheeks that were there a few minutes before. But the heart breaking, soul wrenching sobs that come from a life changing moment.

And I feel like I need that kind of breakdown again. I keep having these mini breakdowns everyday but they just like little tiny cracks in the dam of my heart and sometime soon it's going to crack wide open and it's going to hurt so bad all over again.