I'm trying to be strong about this

[idoinjuly]

I'm so sorry Elsa. I think I would have similar feelings.

Do you think the My Breast Friend could help you with some of the nursing issues?

[lovelyshoes]

Hugs Elsa. I have no advice, but your feelings make sense. Hugs to you.

[sapphireblue]

I am so sorry! All of your feelings are completely understandable!

[Monica Geller]

I'm sorry Elsa! I'd feel sad too! It sounds like a lot of people here have good advice. ((Hugs))

[TR]

I don't have any advice, but just wanted to give you (((hugs)))

[cbwm1]

Kit

[spitforspat]

I don't have any advice- just hugs. I'm sorry things are so hard. You're doing such an amazing job.

[Kit]

I'm sorry, Elsa . I literally just went through this with DS. I'll tell you what I know, what we did, etc. I can't speak for nursing though, as I did not breastfeed.

First, I promise that this is bothering you more than it is bothering her. I PROMISE. When I found out DS would need a brace, I cried in the ortho's office. I was so upset. Oh, it was awful. But when he got the brace...he didn't even know it was on. And your little girl doesn't either. And she definitely won't remember this when she is older.

Second - The harness is dirty? Wash it. Did they tell you not to? Wash it anyway. I'm dead serious - take it off, stick it in the washing machine, and wash it (make sure it is velcro'd so it doesn't stick to your clothes or whatever else is in the machine). If you're not comfortable doing that, take it off and scrub it in the sink with some dish soap. But, we washed ours in the washing machine cause the sink wasn't cutting it. DS was constantly spitting up and it just got gross. WASH IT. It's totally fine. If you take it off, make sure you mark in permanent marker where it needs to be velcro'd back.

Go up a diaper size for the blowouts. Thankfully we didn't have that problem with DS, but the ortho said to go up a size to help that if he was having them.

Get some Aquaphor or Monistant Chafing Gel (we used Aquaphor) and put it on her skin where the brace rubs. The brace might actually be too tight if it is rubbing like that. And we never used clothes underneath it, we always put his clothes over it - per instruction from the doctor (eta: he said it was ok to do that, not that we HAD to). I mean, you CAN put clothes under it, it won't hurt, but if she is too hot it's ok not to.

I know this sucks. But time will fly and before you know it, she'll be out of that brace and you can have a party when you burn it. :-)

Please feel free to PM me if you want to chat, have questions along the way, or anything. I know you're FB friends with cbwm1 so if communicating that way is easier for you, ask her for my FB information and message me there.

[kirra]

I'm sorry I'm not a parent, but after a health loss it's normal to grieve the life you thought you would have. You don't have to be strong about this, and you're doing a great job taking care of her.

I'm coming from the adult side of bracing, and know almost nothing about children's clothes. It googled the brace and it looks like the straps go over her shoulders, so short sleeves should be ok. Just make sure there aren't any seams directly under the brace. If the clothes have long sleeves, a friend who sews can probably shorten them pretty easily. For adults in KAFOs, they use KAFO socks- basically socks that come up to your hip. So long socks are one alternative to long pants. Tights are another alternative (that's what I use most of the time because they look more professional) but braces shred them in one to two days. You're doing an awesome job of monitoring for skin problems. If the irritation gets worse and you have a barrier between her skin and the brace, call and ask for help. Orthotists work miracles.

Hugs.

[Kit]

Also - I don't mean to be an "at least-er" but "at least" they found this now. Sometimes it's not discovered until later, and then spica casts are used. Google it - it's horrible. My son was juuuuuust on the cusp because he was 4 months old and usually the older babies are too big for the harness to be effective - thankfully our ortho decided to try the harness instead of going right to the cast.

Big hugs.

[charley]

I'm sorry  No advice but I hope it gets easier.

[verycontrary247]

So many hugs for you. You're a great mom!

Have you thought about getting her those baby legwarmers? While it doesn't help with the heat issue, that would certainly make diaper changes easier while still protecting her legs from chafing.

Also, these bibs (linked below) were the freaking best for my first nephew who was a major spitter-upper. Super absorbent and goes all the way around their shoulders (kinda like a hairdressers cape) because babies always find a way to turn their head and miss the bib when spitting up.

www.amazon.com/aden-anais-Muslin-Burpy-Jungle/dp/B002SW3CAS

[MixedBerryJam]

I'm sorry you're sad. I didn't realize your beautiful baby had an issue with her hips. I know people have offered tons of bf position suggestions, but have you tried on all fours? I had a lot of trouble nursing my older son (unrelated to the types of issues you're facing) and what finally worked for me was laying him almost-but-not-quite flat on the bed, and me straddling him on all fours. I'm thinking this kind of position might work for her and you, too. Good luck!

[Deleted]

I am so so sorry Elsa.


She is so perfect.

[W.T.Faulkner]

Lots of hugs, Elsa.

[lilafowler]

❤️❤️❤️
I'm sad that you're sad. Be as upset as you want.

[puddleofgrace]

Sending so many hugs. I know it's hard.

[Elsa]

Jul 12, 2016 7:58:44 GMT -5 verycontrary247 said:

So many hugs for you. You're a great mom!

Have you thought about getting her those baby legwarmers? While it doesn't help with the heat issue, that would certainly make diaper changes easier while still protecting her legs from chafing.

Also, these bibs (linked below) were the freaking best for my first nephew who was a major spitter-upper. Super absorbent and goes all the way around their shoulders (kinda like a hairdressers cape) because babies always find a way to turn their head and miss the bib when spitting up.

www.amazon.com/aden-anais-Muslin-Burpy-Jungle/dp/B002SW3CAS

We have leg warmers, they are just thick and I'm worried about the heat. We will try them today.

And those bibs are brilliant, thank you so so much. My target has some in stock, we will grab some today.

[Elsa]

Kit, thank you so so much. I will grab aquafor and monistat today. And I will try the next size up diapers- I tried them last week and she peed out the side, but maybe in this new position it will work better.

They did tell me not to wash it, but whatever. If you did it, I will too- she doesn't have to be in it 24-7, so it's totally doable. I am going to try to keep her in it more than the 16 hours/day he said just in case it speeds all this up a bit though.

Those spica casts are terrifying. Omg. I am grateful it was caught early and that we aren't facing that or surgeries later on down the road....its just hard to see your teeny baby in this contraption. I know you get that

kirra- thank you so much for the advice. There is a part under her arms that is rubbing. She has on an outfit with kind of cap sleeves yesterday- we will try an actual short sleeve outfit today to see if that is better. And we will try leg warmers or socks pulled up a ways - I'm worried about a spot just above the back of her knee. Thank you

[Kit]

Jul 12, 2016 8:47:06 GMT -5 Elsa said:

Kit , thank you so so much. I will grab aquafor and monistat today. And I will try the next size up diapers- I tried them last week and she peed out the side, but maybe in this new position it will work better.

They did tell me not to wash it, but whatever. If you did it, I will too- she doesn't have to be in it 24-7, so it's totally doable. I am going to try to keep her in it more than the 16 hours/day he said just in case it speeds all this up a bit though.

Those spica casts are terrifying. Omg. I am grateful it was caught early and that we aren't facing that or surgeries later on down the road....its just hard to see your teeny baby in this contraption. I know you get that

Oh, I totally get it!  Spica cast or not, it's definitely heartbreaking to see your little baby in a brace like that.  There are some FB groups that I found helpful too, if that's your thing.  I used to just peruse them to see what others were doing, etc. I'm not sure if the links will work for you since I'm copying from my account, but you can search for them too:


Hip Dysplasia - Wheaton-Pavlik Harness/Hip Abduction Brace
www.facebook.com/groups/34693885605/?ref=group_browse_new


Developmental Dysplasia of the Hip (DDH) Babies, Kids & Adults
www.facebook.com/groups/ddhsupportworldwide/?ref=group_browse_new


Hip Dysplasia In Babies (clicky hips or CHD, DDH)
www.facebook.com/groups/HipDysplasiaInBabies/?ref=group_browse_new

Oh - when you wash the harness 1)  Don't use bleach or fabric softner and 2) It can take a long time to dry - sometimes the dryer wouldn't do it all the way in one cycle and we used a hair dryer.  

[papie]

Jul 11, 2016 23:10:29 GMT -5 Elsa said:

Jul 11, 2016 23:08:47 GMT -5 lilac05 said:

I'm sorry.

It's OK to be sad. And it's OK to not be strong sometimes. We know it says absolutely NOTHING about how much you love your baby or how much you wanted her. Please don't let yourself feel guilty for having those feelings. Anyone who says they'd feel differently is lying.

I'm not familiar with the brace beyond a quick Google search, but is laid back nursing an option? My boys both basically laid on top of me in whatever position was comfortable for them when nursing in that position. It's the lazy person's nursing position...so much easier on my back and neck, too!

I don't understand laid back nursing. Doesn't it require her to hold her head up? She doesn't have the neck muscles to do this yet. Bt if she doesn't hold her head up she cannot breathe- her nose is smooshed into my breast :/

You lay down on your back and she lays down on her tummy on you.  It works really well, I wish I had heard about it when my daughters were newborns.  I think it could work with the harness.  

www.mothering.com/articles/natural-breastfeeding/

[papie]

And so many ((((hugs)))). All your feelings are normal. It's a lot to deal with on top of having a newborn. Ditto the cloth diaper covers for blowouts. You can also just try cloth diapers, they are super easy for newborns (no rinsing or anything, and not really stinky) and no blowouts.

[franklin]

Jul 12, 2016 8:47:06 GMT -5 Elsa said:

Kit , thank you so so much. I will grab aquafor and monistat today.

I'm so sorry. I would be upset too.

Frank had a lot of skin/chafing issues and aquafor really helped. I also found that butt paste helped when it got really bad, even though it wasn't a diaper rash.

[toastie]

The only thing I can pipe up about, I would recommend keeping with the 16 hours a day. My boys wear braces on their legs daily. The muscles need to be released for a portion of the day so that they can relax and repair the tears. Basically the idea for them is to stretch the muscles and let them relax and repair and over time the muscle lengthens. I know it seems like a great idea to try to speed it up, but you can't. The body needs time to rest and recover.

We use smartknit socks from cascade. They're made to wick, have no seams supposed to prevent overheating. They sell infant sizes. They're pricey though but I'm sure you could wash them every other night in the sink to avoid buying a million pairs. I love them, but don't feel they last as long as other brands because of the more open weave that allows them to be cooler. So they will probably only last 6-8 months.

[indianchica]

We had the consistent diaper issues like you mention. It was the brand of diaper. For our son, we used Target and did the same for our daughter. I mentioned the issue to the ped and he suggested switching the brand. I thought he was crazy but it was absolutely the issue.

Good luck to you with everything. I would totally feel robbed of tiny babydom.

[kirra]

Elsa You're welcome. Make sure there are no seams in the irritated areas- that makes it worse. Like I said, my braces shred tights and thin socks after just a couple of wears, but they are an option. Do you have any friends that sew? If you're going to be out in the heat, you can try thin socks and fusing interfacing in the behind the knee area. A lot of my braces have rubbed and irritated behind my knee, and fusing interfacing to just that area (I fuse to the outside, so it's not touching my skin) adds enough cushion without adding all around bulk.

You do need to monitor and address skin irritation, and you're doing an awesome job with that. But from an adult who deals with it, skin irritation from bracing often looks much worse than it feels.

Hugs.

[Elsa]

Jul 12, 2016 11:10:56 GMT -5 indianchica said:

We had the consistent diaper issues like you mention. It was the brand of diaper. For our son, we used Target and did the same for our daughter. I mentioned the issue to the ped and he suggested switching the brand. I thought he was crazy but it was absolutely the issue.

Good luck to you with everything. I would totally feel robbed of tiny babydom.

Oh this is a good suggestion. We have stuck with the pampers swaddles but I will try a different brand today. Thank you

[Elsa]

Jul 12, 2016 11:02:34 GMT -5 toastie said:

The only thing I can pipe up about, I would recommend keeping with the 16 hours a day. My boys wear braces on their legs daily. The muscles need to be released for a portion of the day so that they can relax and repair the tears. Basically the idea for them is to stretch the muscles and let them relax and repair and over time the muscle lengthens. I know it seems like a great idea to try to speed it up, but you can't. The body needs time to rest and recover.

We use smartknit socks from cascade. They're made to wick, have no seams supposed to prevent overheating. They sell infant sizes. They're pricey though but I'm sure you could wash them every other night in the sink to avoid buying a million pairs. I love them, but don't feel they last as long as other brands because of the more open weave that allows them to be cooler. So they will probably only last 6-8 months.

Oh the time out needed from the brace makes sense. I didn't think of it that way. Thank you for chiming in- this will actually make me feel less guilty for allowing her to have the full 8 hours out of the brace.

The socks are a great idea- where do you usually purchase?

[Elsa]

Jul 12, 2016 11:33:48 GMT -5 kirra said:

Elsa You're welcome. Make sure there are no seams in the irritated areas- that makes it worse. Like I said, my braces shred tights and thin socks after just a couple of wears, but they are an option. Do you have any friends that sew? If you're going to be out in the heat, you can try thin socks and fusing interfacing in the behind the knee area. A lot of my braces have rubbed and irritated behind my knee, and fusing interfacing to just that area (I fuse to the outside, so it's not touching my skin) adds enough cushion without adding all around bulk.

You do need to monitor and address skin irritation, and you're doing an awesome job with that. But from an adult who deals with it, skin irritation from bracing often looks much worse than it feels.

Hugs.

My mom does and she lives near. I'll have her look at that!

[Deleted]

I don't have any advice, just so many hugs.