Here's a lesson for you all...always listen to your intuition.
I've been feeling like something wasn't quite right with Lily. She isn't rolling over consistantly. In fact, she hasn't rolled over since the first time that she did. She doesn't push up on her arms when she's on her belly, or even keep her arms under her. She pushes them out to the side like she wants to fly and that inhibits her rolling over even if she wanted to do it. She isn't putting toys or things in her mouth, and in fact she won't even keep things in her hands long enough. She wants to play, but she doesn't know what to do. If we sit her down and put the toy in front of her, she's interested in it but just doesn't know what to do with it. She also still has her hands in fists most of the time.
For months I've been reading about things that other people's babies are doing- even other people's preemies- and I leave, crying. I wonder why she wasn't doing these things. I don't compare her to babies her age and I don't compare her to other people's kids, but as far as what the 'average' almost 5 month old is doing...she isn't doing any of it. Today was her 6 month well visit and we talked with the doctor.
First, the good stuff!
She weighs 16.2 lbs! She's in the 50th percentile for weight, but in heigh she's off the chart! She's 27 1/2 inches long! She's grown 10 inches in 6 months! It's fantastic and on the growth chart that they showed me, there is a huge jump from just 3 months ago. She's grown like 5 inches or so. Unbelievable! She's wearing 9 month clothes, but some 12 month stuff already. Especially like pants because she has a belly and the length fits. I'm blown away by how much she's grown. She's also completely sitting up on her own now! Sometimes she still tips over, but for the most part she's doing so well. She's talking up a storm and her favorite thing in the world (other than Daddy) is her Jumperoo.
Then she asked if she was rolling over. I told her that she did, once. Then she asked a series of other questions, and I voiced my concerns. Then she labled her 'Developmentally Delayed.' We have to see Early Intervention and also take her to a Developmental Pediatrician. There is only one in the area, I guess, and she said it can take a while to get in to see him. If it takes a while, maybe I'll just see what my options are in Philly. If you live in the area, do you have any suggestions?
I'm so upset. I feel like we failed somehow. I knew that she was behind and people kept brushing me off and telling me that it was because she was a preemie and because she was behind and that I was just a worrying First Time Mom. But it was more than that, I would say. She's behind other preemies. And now we have to do all of this stuff, on top of what we are doing for her. Personally, (and we all know how crazy I am) I feel like if I could have kept her in there longer, it would have been different. Why do I put all of this onto myself? Everytime something comes up with Lily I immediately go there and it's to the point that it's starting to affect me in more ways than just being a mother. It's affecting my life and my marriage. So that guilt is completely unwarranted, but I don't know what else to do with it. So I go there. And I think to myself, if only I was competent enough to have babies she would be ok. And then, to go even farther, I think People that do drugs while they are pregnant have kids that are developmentally delayed. How did this happen? I saw the doctor 3 and 4 times a week! If I had known this, I wouldn't have wasted all that time. And, to go even farther...I got all the prenatal care that I could...how come kids of parents that do do drugs don't have these problems. How come there is nothing wrong with Nathaniel and his mother didn't see the doctor once? And then I go back to the general dislike of the whole situation and Derick just sits there silent because up until this point, he's been in denial and now his whole world is turned around just like it was with the Erb's Palsey and the Nystagmus. Now he doesn't know what to do with both the situation and his, once again, crying wife.
In Lisa's words, Haven't we passed the test yet?
After speaking with my aunt who's a teacher, there is a broad range of developmental delays. They can be as complex as Down's Syndrom which she obviously doesn't have or as simple as a child that can't cut with scissors. So where does Lily fall? We don't know yet, and I suspect that we won't know for a long time. But we caught it early, and that's good.
So the lesson is that a mother's intuition is ALWAYS right. Don't let anyone else tell you that you don't have valid concerns.
This is edited to add:
In response to Monica's comment, I don't focus enough on what we've overcome. Its easy to sit around and feel sorry for yourself and this is where I'm stuck. I'm at a spot where I can't function. Instead of being grateful that she's here, I sit around and list reasons how I failed her or me or Derick. Instead of chalking it up to Lily being Lily, I immediately go there. I'm tired of it and I know you guys are tired of hearing and its for damn sure Derick is. I just don't know how to get out. We were/are very fortunate and its about time I start looking for the good in my life and not the shit. If I don't, I'm afraid, I'll loose everything. Or at least my mind :)
So thank you Monica for pointing that to me or rather slapping me in the face with it! I am stronger than this. I did what I did for her and I'll do that for her until I die. That's what I need to focus on. What I need to do and not what I could have done.
If you had trusted your insticts sooner, what would be different? Would they have done tests sooner? And even still, what would they have learned?
ReplyDeleteIt's all a big un-known. Don't beat yourself up over this. I know it's easier said than done, but you can't change the way she turned out. She's perfect despite her "delay" So she can't roll over on her own and she doesn't open up her fists much but she's her own unique little person. That only makes her more special.
I don't mean to be condecending, and I'm sorry if I come off that way. But what changes here? She's still the same little girl that she was yesterday, she's growing like a weed and she's developing more and more every day. She "outgrew" her diagnosis of Erb's Palsey and the Nystagmus and that's terrific news. She'll overcome this too, it just may take a little more time than you originally hoped.
Don't beat yourself for not being able to keep her in there longer. It's because of all you did that she even made it to 32 weeks. Becky you have to focus on what you did/do for her to this day. If you hadn't gone to the doctor 3 and 4 times a week, if you didn't get the TAC, then where would she be? She may not even be?
It's okay and expected to be upset over her challenges but there will be more. You can't let them beat you. You are stronger than this. And so is Lily.
I hear you, Skyler has trouble focusing and following things with his eyes so I've been worried too, but he is only a month and a half adjusted so it's too soon to tell.. I hope the developmental doctor gets back to you soon.
ReplyDeleteI'm nak here, so this'll be shorter than I would've liked.
ReplyDeleteFirst of all, Izzy is pretty much where Lily is except she grabs stuff and puts it in her mouth. She's only rolled over 2 or 3 times and hasn't at all in awhile. I'm not an expert, and I don't mean to sound dismissive, but none of it strikes me as terribly abnormal, just a little behind the curb.
Second, seeing a specialist doesn't neccessarily mean anything. Around the time that Lily and Izzy were born, my cousin and his wife were told by their 1-year-old daughter's ped that she needed to see a specialist because she was not only not walking, she was nowhere near it. She wouldn't push her legs out or even stand supported. For some reason, her doc equated that with autism. So there was lots of freaking out while they waited to take her in. Long story short, the specialist didn't think there was a single thing wrong with her and now 6 months later she's running all over the place. I don't mean to compare the two, but my point is this - babies all develop at different rates, some are way ahead, some are way behind, and it is a doctor's job to screen for any POTENTIAL problems in the children that are behind as a precaution because early detection of problems can lead to better outcomes. But I'm pretty sure that in a great deal of the children that a specialist might see, maybe even most, there is nothing at all wrong.
Again, I really don't want to sound dismissive. I just know very very well from personal experience that anxiety can be mistaken for intuition. And I know you are a very anxious person. You've even said as much in this post, you worry about completely irrational things. And it's completely normal and expected, even for someone who doesn't generally tend to worry about much, to worry about your children. Maybe there is a reason for the delay, maybe that's just how Lily is. Either way, Becky, it's not anything that is going to stop Lily from living a happy life. I know that you know that you have to stop blaming yourself. My god, you did EVERYTHING HUMANLY POSSIBLE to achieve the best possible outcome for Lily. She's alive, she's beautiful, she's growing big (I can't believe how tall she is!), and she has a great bright future ahead of her. Sure, it's normal to have some anxiety about her upcoming appointment. But it doesn't have to be something that is so big that it's interfering with your life or making you feel like you can't enjoy the goodness in your life now. And most definitely not a reason to get down on yourself in the least.
I want to reiterate, for I think the third time LOL, that I'm not trying to dismiss your concerns. Believe me, I understand where you are coming from more than you know, even if I don't sound like it. I'm speaking to you from personal experience. Not personal experience of someone who has had a child who is potentially "developmentally delayed" (whatever that means), but as someone who's had alot of anxiety, alot of irrational thought patterns, alot of getting down on myself because I feel like I'm worthless and can't get anything right. It's a disease, it's not the truth. It's like looking at the world through drunk goggles (you know, the kind they let you try on in health class so you can see why drinking and driving is bad LOL.) If you are still seeing a therapist for couple's counseling, you should bring all of this up if you haven't already. If you're not seeing someone, you should. Because it really helps to be able to look at this stuff objectively and for what it really is.
I can honestly say that I don't know one person who has done HALF of what you've done to have Lily. Her whole existence is because of you. Please realize that. And you are right, you need to look more at what you've accomplished and what you have then always thinking about how you might've failed (which isn't even remotely true.)
On a separate note, I'm really excited for next week :) I was telling my husband all about you yesterday. I can't wait for us and for Izzy and Lily to meet.
Hugs Mama. All kids develop at different rates... Braylynne was only 5 weeks early, but she was behind other kids AT FIRST! She barely ever rolled over etc. Once she hit 5.5 months...she finally started doing things. But for the first 5.5 months, I worried everyday.She kept her hands in fists forever...she actually played first with her feet before her hands. Trust me, worrying won't do anything. She will catch up, either with help or on her own. By the time kids are 6, they are all walking and talking, and ready to tackle the world!! I didn't get to enjoy those early days because I worried... People will always tell you what their kids are doing...especially soon when it comes to talking... Braylynne was behind on that... God gave you Lily- she is a special blessing upon your family- honestly.... so what if she's a little behind- I know a premie who is almost 2 and he still isn't walking- though his issues are different than lilie's but the point is... Lily will be okay!! She will develop into the person God wants her to be... Remember God is in Control...lean on him...I know it's hard at times, especially when worrying, but try to cast some of that worry upon him. (I will tell you a secret, I stopped listening to doctors a LONG time ago... when braylynne was 9 weeks old the one doctor asked me if she "lacked oxygen at birth", that was the last time I went there... We don't do "well baby checkups", But we did take her a few months ago and all the doctor was pointing out is that she can't say her L's that great.... Are you kidding me, you are worryinga about that??? So I watched other kids her age, and most can't either!!! (In a few weeks she starting saying them right then) Doctors tend to overplay things! I don't trust them anymore!! If you are worried, you can get early intervention, or you can hang back another month or so and see how she develops. I know it's free till age 3!) Hugs again Mama.
ReplyDeleteI wanted to add...if she's sitting up- that is huge!!! A lot of other kids don't develop that for a long time!! So perhaps it's with her fine motor skills... you can encourage her to grab out for things... once she realizes she can "play"... then she'll do it. Like I said, it took a lot of encouragement on our part with Braylynne. :-)
ReplyDeleteI know I'm late but I wanted to share this with you in hopes you can alleviate some of your worry. Jason was also not a roller. He, like Lily, sat WAY before he rolled over regularly. I also began to worry when he wasn't crawling. That is, until he took his first steps at 8.5 months old. Then I just sort of threw the book out the window. He always hated rolling over, always hated crawling. He liked being upright. He was way ahead of the curve on all the physical stuff, despite not doing well with rolling over, lol (he still does not like doing that, btw!)
ReplyDeleteAlso, from observing a lot of the other children we play with, they often just focus on skills in different orders. One friend of J's has remarkable fine motor skills but doesn't speak very well. Another was very verbal but still can't put together a simple puzzle. Another did sign language and potty training at 18 months (!) but only speaks a few words. In other words, they are all so very different. At Lily's age there isn't a whole lot of STUFF going on, so we get all focused on things like rolling over. It seems like a gigantic thing because it is the only milestone in like four months but really there are so many other things she's learning.
Doctors are there to be very conservative and make sure our kids are fully evaluated and assisted, if necessary. Try to look at this as a positive thing...no matter what, Lily is going to get some extra attention, you are going to learn some new ways to play with her, and you can ease your mind by knowing you are doing everything you possibly can for her. You are doing great (((hugs)))