New to the site!

[LydiasMommy]

Hi everyone,

my name is Monica and this is my first time to the site. My first baby, Lydia, was born on July 31- she is 10 weeks old. She was born 2 weeks early and was 9lbs, 7 oz. She has Erb's Palsy in her left arm from a traumatic delivery. It has been labeled as mild so far. We take her to PT 1-2 times per week and we also do a lot of work with her at home (of course). My husband is a Physical Therapist Assistant, which is comforting to me, but I have found myself overwhelmed by how many things I have to pay attention to - how I hold her, how I dress her, how her arm is positioned, how many times have I done her exercises today? I feel like if I do something wrong, or don't do something often enough, I will impact her whole recovery. I feel like it is all resting on me.

She has been getting really good recovery so far, it seems to be getting better every day. She is now able to abduct her arm, extend her wrist, externally rotate her shoulder sometimes, and is even starting to get bicep flexion. She also is able to raise her arm over her head and bring it to her mouth. These things are all reassuring to me, but I worry about her constantly. I worry that she will not fully recover and she will spend her life struggling to do every day activities. Then I get angry that this happened to us when it could have been prevented. Then I feel guilty because we are lucky she is even alive. I worry that there are other issues due to a 30 second lack of oxygen at birth. She isn't really smiling yet, although I know she can because I have seen it a few times. What if there is something wrong with her cognition? How will we handle that? I was expecting a perfectly "normal" and healthy baby girl, and what if she isn't? Am I a bad mommy because I am spending time worrying about her instead of just enjoying her? I thought that this injury would just affect her arm, and now from reading through some of the posts here I see that it can affect other things like speech, and I have a sinking feeling in the pit of my stomach. I feel like I am not prepared to deal with this. I love my baby with all my heart and soul, that won't change. But how am I supposed to go about daily life just waiting to see if other problems pop up?

Thanks for listening, I really appreciate the outlet provided here.

[jmar]

i have been around handicapped children my entire life-my first experience was at 6 weeks old. with that experience, i have found that you do not make a difference to her as to any other child. you may have to care for her differently, just like any other child, she is unique. all you have to do is love her and take care of her to the best of you ability and she will be fine. do not emphasize her disability. you will be fine with taking care of her.

[veggiebug]

Hello, let me assure you that you are not alone in your worries and fears. I think all parents have had a lot of the same thoughts. It hasn't been all that long since your little girl was born and there is a lot to process. My son was born Aug. 23, and had a mild injury as well, but everything seems to be going well in his recovery. But I share your fears, since he's still healing I'm sure I worry when I dress him, and a lot when I pick him up. Every though I'm careful of the positioning of it I worry about when he starts daycare in less than a month. Luckily I have a couple appts. before he goes and I can talk about my fears with them. I don't know whether he's healed enough not to worry about it, or whether there's still something to be a little extra careful with.

When I came home I worried about whether I should exercise or not and totally feared whatever decision I made would impact him greatly. It's a lot to take on, but I also was injured at birth and I assure you I don't blame my parents for any other their decisions regarding my care. I never had surgery myself because the options back then weren't very beneficial.

Even if by chance she doesn't recover fully, she will have ways of finding her own way to do things. And best of all there are people here that can always help, with advice, support, and whatever else she needs as she grows up.

I get angry still too, they knew about my concerns, they knew he was going to be a big baby. And yet nothing was mentioned during delivery that there was any problems. Not until after. There were even concerns in the hospital during his hearing test and I started to worry there was more going on, but the 2nd test was ok. Thinking about how much I wanted it to go well, I wanted him healthy more than anything. But all I can do is take it a day at a time, and battle each thing as it comes up.

You are not a bad mommy because of worry, it's what we do. You can't turn it off easily.

Have you seen a neurologist at all yet? We are going this coming Monday. Honestly not sure what will happen there, but I think he will help evaluate Phineas. If you have other concerns check with her Dr.'s if you don't like your answers ask for specialist, as a parent you are her best advocate!

Hope this helps some. If you need to talk more let me know. If you are on Facebook you can also find me there.

Good luck, and keep us up to date on how she's doing.

Traci

[LydiasMommy]

Thank you both so much for the replies. It makes me feel so much better to know that there are other mommies out there dealing with similar situations. Lydia was seen by a Neurologist in the NICU and also a follow-up appt when she was 5 weeks old. Both times the Dr gave us an excellent prognosis - "full recovery" by about 6 or 7 months old. But I don't want to get too excited about that, because they are not BPI specialists. I am trying to get an appointment at Akron Children's Hospital in their Brachial Plexus Center since we live in Cleveland. I went onto their website and requested an appt and haven't heard anything from anyone, so I will be calling them on Monday.

Veggiebug, I totally understand your concern about daycare. I work weekends so Lydia doesn't go to daycare, but I have often thanked my lucky stars that this is the case because I would be so nervous about trusting strangers to take care of her poor little arm. I'm nervous when just family or friends hold her or play with her. Maybe you can type up a little instruction page so they know what to do and what not to do? Please keep me updated on what the Neurologist says about your little guy!