Need help from moms with OBPI

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
kissygoose

Need help from moms with OBPI

Post by kissygoose »

It's been a long time since I've been here because I had a difficult pregnancy and now have 2 month old colicky twins. While my OBPI arm has never been that bad I am now being more and more limited by it. It seems as my children get heavier my arm becomes more and more useless. By the end of the day it hurts down in the bone. My doctors are useless here. I tried getting assistance with it at the beginning of my pregnancy and they just said it was OBPI and that it wasn't worsening and was at no risk to get worse. I'm trying to find ways to help my arm like propping it up on a pillow so I can hold my babies up enough to feed them. But I could sure use some more tips from any moms who have had to deal with a baby and OBPI.

Thanks.
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Need help from moms with OBPI

Post by Kath »

Christina
I have been thinking about you and wondering how the twins are doing.

It is wearing on our back with one baby and two newborns must be so hard... even without OBPI.

I had my first two children 14 months apart and they were big babies... it was tough.

I bathed the babies only in the kitchen sink lined with towles to avoid bending and lifting tubs.

I proped my arm on my knee - foot on furniture held the baby's head on the OBPI arm and used the unaffected to feed... I think they have boppy pillows shaped like a U does that help with feeding? I also just left the pillows propped up on my couch when I was baby sitting for the grandchildren. I found my arms and back hurt trying to hold them.

You need help that is for sure and the doctor is wrong obpi complicates the tasks of motherhood. Just the folding and repetitive motions one uses to function under normal circumstances.

I had only on colicky baby and almost lost my mind. It turns out she was allergic to the formular. My son was also and it did not last long. If you are nursing my daughter could not drink milk or eat tomatoes when she she nursed the kids got colicky...

I was told my arm would never get worse and that because I used the "good" arm so much nothing would happen... That is the biggest lie I was ever told.

I hope some of the younger mother post on this. I changed diapers on the floor so I would not drop the kids and when they were a little older. I had to use a playpen, for safety's sake,to contain one while I took care of the other baby .... and it did not delay the kids.

I don't know how you can manage the carseats... they were impossible for me to manipulate 11 years ago when my first grandchild was born. I wondered how I would have managed if I had to use the ones they use today.

I know the carseats clip in and out of the car but I think that would be hard for you to carry. I also think it might put a big strain on you neck and back.

I wish I could help more...
Kath robpi/adult

Kathleen Mallozzi
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Need help from moms with OBPI

Post by Carolyn J »

Hi Kissygoose,
Yes, I'll never forget those days alone with my baby & my LOBPI arm,wrist & hand. And my "good" arm etc. was sooo overworked.
I devised ways to hold,prop-up with pillows and carry. We didn't have Snuggies, hammock-like thingies, that can be warn like a sling/backpack only warn on your front chest.You can move it around you chest for different tasks. If I were you,or have a baby now,[HA! at 67!],this is what I'd use for everything. I probably wouldn't take it off except to bathe! PLEASE save your "good" arm/hand,legs and your back as much as you can. I over-compensated and am now paying the price with all kinds of Pain,back & muscle issues.Look for any product that will save thses limbs/back& muscles; there are alot of things out there. I notice ads all of the time.

Most of all, take care of you. Your baby will be better and happy too. {I didn't take care,so I know what is ahead if you don't do this}.
Love & hugs,
Carolyn J
Carolyn J
Adult LOBPI
kamren
Posts: 262
Joined: Sun Feb 15, 2004 7:19 am

Re: Need help from moms with OBPI

Post by kamren »

I have 5 children ages from 13 down to just over 2 years old. With all it was hard and as they got older even harder. I feel so guilty putting the little ones down beside the car cause I can't open the door with my BPI arm...or always needing to use a pillow under my arm to support it when sitting and nursing or just holding the babies. Nursing was VERY hard, and all were weaned to a bottle at about 3 months old. Still hard with the bottle though....again the guilt over teaching baby to hold his/her bottle early cause it was so difficult to hold them in my BPI arm but completely unable to feed them with it either. Or when people look at me as I try to get them into a cart with only one arm.....The older (and heavier) they got the harder it is, til they are old enough to not need me to be picking them up so much. I understand the pain at the end of the day, with both arms worn out from overuse. My shoulder/neck killing me.

I can't even imagine having to have done it with twins.

All I can say is use pillows to "prop" your arm as much as you can. Some, I know, use the snuggle packs....I found they just made it worse. Do whatever you can. All you can do is to do your best.

As for the future.....once the kids started playing little league...sitting on those bleachers...by the time we get through all the games my shoulder kills me. I have learned to bring a chair with a back to help support my shoulder and arm.
CyndiAnn2
Posts: 2
Joined: Tue May 24, 2005 10:32 pm

Re: Need help from moms with OBPI

Post by CyndiAnn2 »

Hi Kissygoose:
Boy, did your posting bring back memories! Both my babies were large, & I can't imagine being able to take care of two at the same time with my ROPBI! The other ladies are absolutely right. Pillows are going to be your new best friends! I also crossed my right leg over my left knee & let my legs hold the baby; I obviously used my arms for support, but using my legs helped take up some of the burden.
You definitely need to find ways that work for you; your shoulders & back are depending on it.
Although I'm sure you get frustrated, try to cut yourself some slack. I'm sure you're a great mother, and your twins will someday tell you that!
Good Luck!
Cyndi Ann
espiper
Posts: 61
Joined: Mon Jan 10, 2005 12:45 pm

Re: Need help from moms with OBPI

Post by espiper »

If we are talking about nursing - I found on the second kid (yes, a slow learner) that to use a boppy or other pillow was a total hinderance. I figured out that since my arm wanted to stay close to my body anyways it was easier to simply nestle the baby's head in my elbow when nursing on that side and guide with my elbow instead of my hand like they try to teach you in classes.
I also used a front pack and sling at that age so didn't have to carry them with my arms all the time and had laundry baskets that I had firm foam cut to fit in various rooms to have them close but safe and off the floor. Nursing them in a sling also took some of the work out of holding them outright.
I also found a gym that had cheap day care to get back in shape quick and eagerly let all visitors hold the baby to get a break.
I hope some of this helps - good luck! Suzy B
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Need help from moms with OBPI

Post by Kath »

Christina

Just wondering how you are doing? Since you sign in with the name Kissygoose your babies will have the most important gift of all -- a loving mother.

All of the physical things we cannot do with our children are really not important. Clapping hands and hold the kids up in the air will never be missed. Being there for the kids and listening and hugging and kissing them is really important... that we don't need two arms for... there are many mothers with two arm that can't give the kids the important things they need...
My kids were a bit tired of UBPN talk when I first found UBPN... They told me I was fine and they did not really realize anything was wrong with me... in fact "it never affected them at all"... so I guess the things I worried about and wondered if I missed out on... they did not...
I guess some of the things that I felt bad about when I was young was not really as important to the kids as it was to me.

I played on the floor a lot with my kids and I still do with my grandchildren. Kids love when we get down to their level and I think people who don't play on the floor are really missing something... LOL...
As soon as I sit on the floor I have my two three year old granddaughters on my lap and we are playing and reading and they love it...

I hope the twins are feeling better and sleeping through the night soon and you can get some rest.
Mothers with two good strong arms find twins rough... so don't be hard on yourself.
Kath
Kath robpi/adult

Kathleen Mallozzi
kissygoose

Re: Need help from moms with OBPI

Post by kissygoose »

thank you ladies. After living with the OBPI all my life I often forget I actually have it. I think mostly it's because I learned at a young age how to get around it. Now having to learn how to compensate in new ways is difficult and is really reminding me of what I went through as a child.

I do use a boppy which helps some but I even have to prop that on pillows or my poor kids practically lie on their heads. I've tried using a front carrying pack but it requires me to reach out in front too much and just tires my arm out. I'll probably have to find a sling that will work better.

I'm having a particular hard time right now because my son has colic pretty bad and constantly wants to be held. His sister isn't as bad but is getting there. It's so frustrating having to decide either to leave him in his bouncy screaming while I do something like prepare bottles or to pick him up and let the bottles go (not a valid choice when you have hungry kids). Sometimes I feel like I'm not doing a very good job.

Kath...I really appreciate the last post. I've been thinking a lot lately about what the twins will think when they get old enough to understand that "mommy is different" and can't do certain things. I keep thinking about things I won't be able to do with my kids. It never really bothered me when it was just me that was affected but now with the twins it seems so much bigger an issue. I suppose where it really counts I will be able to come through for my children.

As for how I am, other than tired I'm mostly ok. I have to have my gall bladder out next month which is going to be rough but as it stands my brother will be coming in to help with the kids. I'm just pretty much busy taking care of Sandy and Stevie, trying to get my business back up and running as well as training for my Day Care License. But I'm loving every second of being a mom.
Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Re: Need help from moms with OBPI

Post by Judy-T »

I know you must be very tired. I am a mom with obpi and remember the early stages. I have not answered sooner because I did not know how to answer the twin questions, so I asked a good friend who had twins for advice for you. She said use pillows alot and don't feel like you have to take care both at the same time. She said its hard to do but with the colicky one just make sure they are fed and dry and let them cry to sleep. she said it took exactly 20 minutes and her child would go back to sleep. she told me she would help you thru with any problems. She said for you to be sure to take breaks for time for yourself. If you would like I will e-mail her addy to you.I know having a colicky child is hard because my daughter was that way. We used mylicon drops and it seeme to help with the gas.(we called it liquid gold ). Keep in touch and let us know how things are going. Judy
kissygoose

Re: Need help from moms with OBPI

Post by kissygoose »

I'm at the end of my rope. My poor kids aren't feeling well and I've had a total of 2 hours sleep in the last 72 hours. I probably could handle it but my arm and upper back are killing me. It's even hurting me to type and I've never had that problem. I'm leaving my kids in their bouncy seats more and more because I just hurt too much to carry them around. Growing up I've always seemed to be able to work around my arm but I never had to deal with pain associated with it then. All this is just making me so mad and bringing back all the feelings I dealt with as a child.
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