Baby Girl April 6th

[lrllnd1]

Hi, I had my baby girl April 6th 12:21 pm C section. She was 7 lbs 5 ozs. She had her lession ( L3 L4)closed on April 6th and a VP shunt installed April 16 th. She has both hips dislocated though. At first they told us to triple diaper her then they sadi we didn't have to if we didn't want to then they said don't bother doupble diapering her at all since her hips are so bad she will need surgery on them. Anyone had this issue a newborn with SB and dislocated hips. I am still double diapering her. I am breastfeeding which has been a challenge to say the least but we are sticking with it since it is the best thing for her.:clap2:

[LisaJoy]

Congratulations! What is your baby's name? And post some pics when you have a chance (we all know that you are very busy right now).

[XoBLoNDiE85]

Congrats! Our daughter Hannah (almosy 10months) also has dislocated hips but not until she was around 4 or 5 months. The ortho doctor wanted to do surgery on her hips also but we talked with other doctors, some gals on this board, and the sba and decided against it since it isn't a guarentee fix. The hips can still pop out after the cast is removed and the cast can been on for a loooooong time. One lady i know her daughter was in one for 2 YEARS and they popped out when the cast was removed and the little girl had sores and now has arthritis =( he choice is up to you and what you feel is best for you guys, but in our case it wasn't. Hannah is a happy and smart little girl. She is also shunted (surgery at 7hrs old) and is cathed every 3hrs except night time as she now sleeps thru the night. I use to cath her 1-2 times a night when she would wake up. Hope everything is going smoothly for you and starting to fall into a routine. I will say that its very scary at first but after awhile it all seems just part of your everyday life (which it is) but i guess it just seems like its always been like this =). These children are such blessing....such a gift from God! I could go on and on but I will stop now haha. Talk to you soon ......Laura......=)

[lrllnd1]

Maggie is doing well. They cathed her a few times in the NICU but got very little urine so said we don't have to cath her she is voiding well on her own for now. We see a pediatricianand physiotherapist in a few weeks about her hips and knees, then go to the spina bifida clinic the following weeks. She is a really good baby only cries when she is hungry which is often since she is breast feed.

Lori

[joybell322]

Congrats! Can't wait to see pictures.

About the hip thing. My daughter had dislocated hips also. Our ortho said not to even contemplate that sort of surgery until she walked since standing & walking are a key part of success with that surgery. He said MANY babies have that and when they start walking is when the hip socket actually forms. She did have to have surgery when she was 4 because she fell when her hip came out of socket. It was extensive 8-hour surgery. Then she was in a spica cast for 5 weeks. Then in heavy rehab for 6 weeks after that. It wasn't an easy time for us, but she got through and now walks well today. It was worth it. But I certainly wouldn't even think about it until she tries standing & walking.

Lots of luck!

[lrllnd1]

Thanks,
We are going to the Spina Bifida clinic this wednesday to see the specialist and have a bunch of tests done. It is going to be a very busy day. Hopefully not to over whelming, my husband is going too. We say a physio therapist last week and she doesn't think they will do anything for her hips right now also. Her knee to not staighten out very far they tell me they formed that way in utero, I wonder what they do about that also.

Maggie is doing really well though she is up to 8 lb 5 oz, and is a very good baby. Will update after I come back from the SB Clinic.

[LisaJoy]

Glad to hear Maggie is doing so well!

[lrllnd1]

Hi,

Maggie is now 14 weeks old and doing very well. The oprtho pedic surgeon put her in a Pavlik harness for her hips which are dislocated and it is working really well. It holds her hips is the correct position for them to form properly. The surgoen said that a lot of doctors will not do this for a SB baby with Maggie's level of lession but he thinks it is definitly worth the effort.
Lori

[LisaJoy]

Good to hear from you! Glad Maggie is doing well.

[valerie]

Congratulations on baby Maggie, hope all is going well with her now. I love the name by the way, My son cian was 1 yesterday, doesnt have any problems with the hips as yet and has had 2 scans, they will scan him again in a years time. His legion is L1/L2, doesnt have movement in the legs, shunted at 7 months but doing so well. i cath in the morning & at night as he had a little reflux but wets the nappy through out the day. Best of luck

[lrllnd1]

Hi,

Maggie can move her hips ( hip flexors) so far but it is harder to determine since her hips are dislocated. Maggie's doctors tell us that we will not really know her level of impairment until she is a year old. They orthopedic surgeon thought she should be able to move her quads for knee extension but she hasn't yet. He is mainly concerned with her hips right now since the brace she is in will help them to develop properly because before 4 month a baby's hips are mainly cartilage and the brace holds the hips into the socks so they form properly. When the brace comes off he was thinking about casting her right foot which is slightly clubbed but it can't be done while she is in the palvik harness. Maggie didn't actually have a clubbed foot when she was born, her foot started to turn in when she was about three weeks old.

Lori

[lrllnd1]

Hi,
I thought I would add this since a lot of parents with baby's with Spina Bifida go throught this. I attended a family wedding this past saturday and it was the first time most people in my family got to meet my baby Maggie who has Spina bifida. It was funny how people actually looked shocked and surprsed how Bright and Beautiful she is. I have no idea what they were expecting some kind of freak I guess. Oh well I hoped it educated some of my family that special needs babies are just as fabulous as any other baby, Maggie even sleeps through the night which is great for a breastfeed baby.

Lori

[dahliafaolan]

Ok, maybe I'm having a brain fart or whatever, but what seems to be the problem with the diaper issue? I'm just asking because I have a dislocated left hip. It's been dislocated since birth and my parents declined to do any surgeries or whatever because there was no guarantee they would work. But we've never had a problem with diapering me, even with my dislocated hip. And believe me, it's pretty obvious some mornings that it's dislocated. We can hear it popping in and out of socket as I'm getting the diaper on.

[lrllnd1]

The reason I double diapered Maggie at first was just to hold her hips in place, using two diapers holds the hip apart and stable. Years ago they just double diapered babies with hip displacement. The reason they want to help her hips develop correctly with the brace is to stop them from being dislocated so the ball or head of the leg bone will be in the socket. If the hips are dislocated it causes asymmetric hips which causes the pelvis to lie at an angle which can lead to Scoliosis and pressure sores. If her hips are symmetrical it will be easier for her to walk. Maggie's Doctors says a lot of doctors do not do any thing for babies with dislacated hips with Spina Bifida, but he thinks it is worth it since it is just a brace I have to wear on her.
I hope that clarified the double diapering comment.