EI Update

Just a forewarning- I have a LOT of things on my mind, so settle in, this promises to be a long post.

She had her main EI review this last Friday, and WOW that was NOT a fun appointment. Both her Physical Therapist & her Occupational Therapist were there, and it was a 2 & half hour appointment listening to them say how behind she is & blah, blah, blah. I love her therapists, they are great, I just don't enjoy the EI appointments at all. No parent wants to hear how much your kid is struggling & how behind they are. I’m struggling with some of what we are dealing with as far as helping Liberty develop is concerned, and sometimes it is SO hard to keep my attitude going from, “We can do this,” to “This is hard… maybe too hard.” I swear on the days she has her EI appointments, it's always the days where getting on FB just makes me break down and cry my eyes out because all the posts are about how all my friend's kids are hitting all these developmental milestones, and LG still isn't. I know that it's all in HER time, but that doesn't make it easier. She basically feeds at a newborn level eating only 23oz a day, which is what qualified her the most for EI. Although I had posted about her eating solids, that was like a 2 day thing. It backs her tiny tummy up so badly & I think that is her biggest problem. They said developmentally she is on track with a 6 month old, so that makes her a month behind what her adjusted age puts her at. We're slowly moving forward & even though it has definitely been a different path then the one we had intended on, it's all worth it.

At her EI appt, they told us that the only thing Liberty isn't delayed on, is her social level/ and how smart she is. They say she is around 10-11 months on that, which doesn't surprise me because she is just so smart. We're just amazed at how she JUST started rolling over more than once at a time. Her firsts seem to be an even bigger deal than it is for most Mama's. Mainly because they always come as a TOTAL surprise. Very few of her firsts have happened when we were told they “should.” Some happened early, but most happen late, so they always catch us off guard. Where is the section on THAT in “What to Expect: The first year.”? Yea, there isn’t one. We never know what is coming next. It’s confusing, and exhausting, quite frankly.

I'm lucky to have met quite a few amazing Preemie Mama's that actually "Understand" what we are going through & don't judge. It's soo nice to be able to talk to them about things, because talking about Libby's developmental delays with parents who NONE of their kids have ever had any delays is just hard sometimes. I love the support we get from most of our friends & family, but I'm not one of those people who wants advice on how to deal with Preemie issues, from someone who hasn't ever dealt with them. It's so easy to get annoyed with comments that I'm sure are meant to be supportive, but most of the time they come off very condescending. So, here is the truth. The raw, harsh, I-don’t-want-to-admit-to-it truth. Being the parents of a Preemie baby girl is HARD. Harder than either of us ever thought it was going to be. Hard and confusing and, at times, depressing. And hard in ways that no one, even the experts, really “gets.” Unless you’ve been there, there is no way to really understand. (No offense…)

I have tried SO HARD to treat Liberty as the corrected age baby that she is. But my brain knows how much time has passed. My brain knows that today, Libby is 9 months old. Any other 9 month old would be giving me a run for my money by crawling, or in some cases WALKING around. Liberty is JUST barely learning to sit. It's hard to be at a playdate & see other 9 month old babies that are SO FAR ahead of Libby. By leaps and bounds. I try to smile & act like I'm okay, but honestly, it's HARD. I find myself sometimes finding excuses not to go to playdates, because Libby is the only preemie, & that is when we see how delayed she really is. Seeing other 6-9 month old babies doing all these things, and then I just have to hold Libby because she can't do what they are doing. It hurts because she will look at me and wimper and give me this look like "why can't I do that Mama?" and it just breaks my heart. She loves being around all the other babies, so I was amazed on how well she picked up on how they could do things she couldn't. I just wish I could make it easier for her, and the part where I have ZERO control (I'm kind of a control freak if you haven't realized) on how fast she develops, it's hard.

I didn't mean for this post to turn into me complaining, but honestly sometimes I need to vent. Sometimes it just gets so depressing & even though I know that it wasn't my fault she was born early, in a way I still know it is & I hate that. I hate that my body failed her, and that because it did, she has these problems that had she been born full term, she wouldn't. The preemie Mama guilt has been really bothering me lately, most likely because I'm being faced with everything all over again with Baby#2. I just feel like that even though I got off the NICU rollercoaster, it's like I got put on a different rollercoaster & I WANT OFF! While our baby was in the NICU we strived to keep our kid alive and to get out of that NICU and run like hell. At that time in our lives everything else seemed like no-big-deal, we could handle whatever was thrown at us later. Just get us out of the NICU! I want to jump a hurdle and never look back, but this is so different it keeps coming back and sometimes it seems as though I never jumped the hurdle to begin with. I’m so aggravated by how easy it is to be negative. How simple it is to let the cynicism and the demons take over and make the world dark. I’m even more aggravated at how difficult and trying it is to stay positive. Why is that? Why can’t it be the other way around? But, of course, I know the answer. The good stuff is worth fighting for. The prize is sweeter when you’ve earned it. And, most importantly, the effort one puts into seeing the glass half full gives life a value it wouldn’t otherwise have. Hopefully that all makes sense. I know I’ll be ok. Mainly because I know Liberty will be ok. And for the things that either come early or come late, or don’t come at all – we’ll take it as it comes. One at a time. Because that is all we can do.

THANKS for listening, if anyone is still reading :)