Friday, October 24, 2014

Freedom.. at least a little bit.

On Tuesday the 21st - almost 3 weeks since the cast came off. The day before Pip turned 11 months. We went for another xray. When the Dr came in and the nurse behind him.. The one that always comes when I flip out on bad news, yeah her.

Anyway, my husband and I exchanged nervous glances as the dr asked how Pip sleeps. Uhhh.. poorly now thanks to all this! She was sleeping all night before 7 months ago! ...Has it really been seven months? Oh man. 7 months ago we got the first bit of "her hips aren't moving the same way on both sides..." 7 months ago we got the referral. 5 months ago we got the news that she'd need surgery to fix this. Almost 5 months ago she had said surgery. Almost a month ago our journey shifted into a less complicated path and the cast came off.. Almost 4 days ago it shifted again..

He asked about her naps and her sleeping times. I told him she is in her bed by 8 and doesn't leave it really until 7am, although she does wake at least twice. Naps are a bit more tricky.. she takes one from 12-2/3 but also sometimes takes one from 830/9-930/10 and 330/4-530.. I'm trying desperately to cut those other two out and have one big one in the middle. He said good. He only wants her in the brace for naps and bedtime.

..wait, what?

My baby who just accomplished rolling over in the brace a few days back, unexpectedly, gets to be a normal baby for her waking hours!? Yay! Wait. What if the hip pops back out? What if this doesn't work and a cast is in our near future again!?

This is where I really need to tell myself to take it one day at a time. I'm full of "what ifs" and I miss the now a lot. So she, my 11 month old preemie, can roll belly to back finally. She tries back to belly but tries to go left and her left leg won't straighten fully yet so she just kinda hangs out on her side, frustrated. She can fit in everything other babies can fit in! And I have the chance to totally rethink her Halloween costume now but I refuse to. Haha. I love my zombie princess idea and by my, I mean our roommates. :)

We go back again 11 days before she turns one. One. Time flies, it really does. BUT. She can have smash cake now without me worrying she would get get cast all yucky or the brace filthy! I love my little miracle.

Wednesday, October 8, 2014

November is Premature Birth Awareness month.


November is creeping up on me, us, everyone. I'm trying to focus on one thing: Halloween. So I'm trying to push November out of my head. But, I've been asked to have our family be the ambassador family for March of Dimes this year. And since I'm the mother of a preemie now, and our story is something that could very well happen to anyone.. Which I would want to make known so it IS preventable, I accepted. So. Our goal is to raise $500 for March of Dimes. And in order to do this, I also have made a custom nail wrap design through Jamberry Nails, with whom I am an Independent Consultant with.

To purchase these, please contact me here: https://www.facebook.com/CSweeney14
**All commission I make from the sales on this design or any purchase from the website(http://csweeney.jamberrynails.net) towards this fundraiser(March of Dimes Fundraiser) will be donated.If you do not wish to purchase the wraps I created with Jamberry, then please, feel free to just donate! Thank you for your time! Every little bit helps.

Donate or join Team Lainee here: http://www.marchforbabies.org/personal_page.asp?pp=5437767&ct=4&w=6903453&u=csweeney14

Here is our story:


Tuesday, October 7, 2014

Freedom

Last Wednesday the husband, Pip and I made the 45 minute journey to Pensacola for a 4 week cast appointment.  We went to the cast room to wait for our xray. After the xray we waited for the Dr to come in to say 'looks great, see you in x weeks!'

We didn't expect what had happened next... he came in and said "Everything looks great! How about we take the cast off today?" My world went into slow motion. I said get outta here and he started to get up so I started screaming "no!" We all laughed.

He said he wanted to see what the xray showed when manipulating her legs. I asked what would happen after the xray. He said a brace, nothing our another cast. I froze. I told him if they wanted to put another cast on to not take this one off!

I, of course, started crying. Happy tears, mixed with some fear and some sadness if she had to go back into a cast. I held her arms up so the cast tech could cut off the cast. Lainee hates being held down. She screamed majority of the removal.

Then.. I didn't know how to diaper our pick up my child. Haha. I was scared. Scared of pushing her hip back out of place. I had gotten so used to picking her up by supporting the cast, that lifting het up under her armpits didn't seen feasible. I got her up and supported her left leg so it didn't flop around. Which was prefect.

After almost 4 months (the next day would have been it) of not seeing my baby girl's legs, I was beside myself! She had no sores just dry skin. I was relieved! We cuddled waiting for the second xray. It was so nice to hold her close again.

After the second xray and much of Lainee's screaming because she didn't want to be put down.. We left with a prescription for the brace and another appointment in 3 weeks.

Over to the brace we went, just to find it closed. I was crushed. A guy came up that worked there and said the one that fits the fitting wouldn't be back until 230-3. And I had to be back to town and at work at 330. So after calling my boss, and getting lunch. We went back to the brace place. We got a size small rhino brace. It was hard to put on the first couple of changes but now, almost a week later I'm good to go! Changing her is still a learning process since I'm so used to lifting legs to change diapers. Changing a poopy diaper is the most frustrating part. I can't exactly roll her easily now and I can't lift from the small of her back/butt area lol. Right now the brace can come off for diapering and baths. No allotted time, just long enough to change her or bathe her.

She tries to roll over when the brace is off. It's just her left leg isn't moving much yet. Now it's a while different set of worries.

Thursday, September 25, 2014

My beautiful girl

We close in on month 4 in a cast. How crazy right? In 6 days we go for a check. Probably an xray. And lots has happened in the past month.

About 3 weeks ago we got pip's ears pierced! She did amazing! Didn't cry on the first ear and only cried for about 2 minutes on the second! I was so proud. But I'm also worried. Because she might need another mri or the cast might come off before 12 weeks. I guess we'll hit those bumps when they come.

Pip turned 10 months old on monday! Crazy. To me she feels 8 months. But that might be because I didn't get to see her for almost two months.

Annnnd, I started back to work on Tuesday. I go in an hour after the hubs gets out. Which makes finding a babysitter easy. And I only work 3 hours. Downsides? I close - out at 6, which means hubby has to cook and it's a late dinner. It'll be small paychecks.. but that's ok. I have to wear a uniform again.. wouldn't it be awesome to work in your pjs outside of the home? Upsides? I get a 4 hour break from my house. I still deal with kids - too many, not two. I socialize with other adults! Annnnd I'm getting paper (haha).

Overall, I'm tired. But it's a slight welcome tired.

Monday, September 8, 2014

Broken, but not showing it!

Lainee got a second cast put on Thursday. It went a lot smoother than I anticipated. She went back early. They got the iv in her hand on the first try! She got a bath! Annnnd another cast. Dr said the arthrogram went better than he anticipated. Her hip does not want to pop in and out of place, but the socket is still too shallow. But the cartilage around the bone is formed nicely and it's looking promising. Which meant he could cast her differently.

My little zombie baby. It looks like she's dragging her left leg. Or dancing. We'll go with zombie baby. But the cast is bigger in the waist - I can fit to my wrist down the front. And bigger in the feet. Probably because he knows if she has to spend 12 weeks straight in this one I'd knock him out with small feet openings. My baby isn't going to have purple feet this time.

The best part? She fits in her car seat! - the one made for all this. AND her high chair! I was so elated. That means probably no spica table. She goes back in 4 weeks for an x ray and to talk to him.

Tuesday, September 2, 2014

Doomsday

Went in to today's appointment thinking it was going to go well. When they took us to a room instead of the cast room my heart sank. I knew the cast wasn't coming off today. Knew it. And I started getting angry. My baby girl's feet are turning purple every time she is up right. My mommy gut clawed the drs eyes out multiple times during our talk.

Her hip socket is still too shallow. So she needs a second cast. Fine. Ok. In two weeks.. The wheels came screeching to a stop. I wanted to scream at this dr. I said no multiple times. I stressed that her feet are starting to scare me.. he left to leave the scheduler to come in.

I cried. Not because a second cast is going on. Kinda because my daughter very well may be celebrating her 1st birthday in a stupid cast.  And kinda because my baby will probably roll over for the first time after her 1st birthday.  Heartbreaking. I was mostly crying because I couldn't see her feet purple for another two freaking weeks.

In comes the scheduler. She said we have two options. One - a squeeze in on Thursday. I, again, came to a halt. I asked what time then immediately said yes no matter the time. So 730 on Thursday morning we check in. They'll put her under and remove the cast. Then inject her hip with dye, manipulate it around a bit, then recast. Although the P.A. said there is a small chance after the dye and manipulating they might choose a brace. My hopes aren't there. I'm ok with a second cast. I wasn't ok waiting 2 weeks to get it.

So. I also asked what happens if this next cast doesn't help either. That's when they go in and cut a part of her hip and form the socket. So, a third cast and pins. Lovely. :/

Ready for Thursday to be done and over.  Ready for the cast to be behind us.  Ready for my daughter to walk, crawl, scoot, hell just sit up or roll over.

I believe a spica table is in our near future as well.

Sunday, August 24, 2014

9 months.

Pip turned 9 months old two days ago. 9 months. It's hard to believe 9 months ago today I was fighting for my life and my baby girl was getting hers established. I think.. I think that her coming early was just the beginning. In her little lifetime so far she has had nothing but downfalls.  Being premature. Having a dislocated hip. Not being able to roll over, sit up or even crawl. But I also think that we need to learn from her. She doesn't let the cast hold her back. She giggles and "jumps" in it. She loves. Loves her brother, loves her daddy, the pups.. and me. Unconditionally. The way she watches her brother makes my eyes water every single time. The way her eyes light up and she wiggles in her cast happily when I walk up to her bed. I love it. I feel like it's hard with her.. to bond. She can't exactly be held to eat a bottle. Hell, holding her in general is hard. Awkward. We can't really snuggle. I try. Trust me. She moves from bed to bean bag chair to someone's legs, sometimes the floor, sometimes the car. . Back to bed. She doesn't seem at all bothered. Well, in a sense. She is bothered sometimes and gets fussy. But we have a great routine down now. Wake at 6/7, up til 8/9, nap from 8/9-10/11, lunch, nap from 12/1230-2/3, up til 4/5, nap from 430/5-6/630, dinner and up til 8, bed 8/830.. She wakes up sometimes twice a night.. now that she has that Amber teething necklace she eats and goes back to sleep.

I'm so ready for this MRI on Wednesday. So ready for the news to be a brace, not another spica. Maybe I'm getting my hopes up to high. Maybe I should prepare for a second spica. But I'm ready to start moving on. I'm ready for my baby girl to move after her big brother. I'm ready to cuddle her when she needs it, rather than try to hold her against me awkwardly. I don't want her to spend 12 more weeks thinking this is it. This is get life now. Because she doesn't know anything different. She'll be one in less than 3 months. She should be moving around after Alek. She should be able to sit up and play on her own. She should be up in the high chair at dinner with the family. Not looking up at us from the bean bag chair. Or on my leg.

So, here's to wishing for excellent news. News that puts spica days behind us.

Thursday, August 14, 2014

2 weeks 5 days. It needs to hurry up and pass.

Not much longer. I'm ready for this cast to be off. I'm sure she is too. She's trying to pull herself up by lifting her torso. She wants to move so badly. Her mri got cancelled, and they never called back to reschedule so I need to call them. There is no way I want to prolong cast off day, so the day they wanted the mri rescheduled for - Sept 4th - was out of the question.

We went and got her an amber teething necklace since she was up every night screaming for at least an hour and not even eating in that period. She's sleeping better already! It's only been 3 days. She's still waking to eat at least once, but no screaming. Success.

Monday, August 4, 2014

4 more weeks.

I'm so over this cast. I'm so over sleeping only 2 hours - maybe 3 - at a time. She used to sleep through 8 hours. I'm ready to go back to that. I'm ready to snuggle my baby without a bulky cast.

She and I are both ready for her to move around. She tries to move so much. She'll try to pull herself up by tucking her chin to her chest. I'm ready for her to sit up by herself so she can play with her brother better. And so she can use the high chair at meals instead of the bean bag. She wants to be up where we are.

The cast is finally starting to have a stale urine odor. After 8 weeks. Pretty good if you ask me. I'm so nervous for when it comes off. I try to clean down as far as I can but it's really hard. And really gross. I really hope she doesn't have any breakdown or horrible sores under it. I'll feel horrible for not being able to know. :(

And the fact that he said there might be a second cast? I can't do this again. I can't sit by and watch my already behind little girl fall further behind in gross motor. I want a brace on September 2nd. That's all. But I guess on August 27th they'll have better knowledge. She goes for a mri that morning. I don't know what they'll be looking for entirely. Her xray looked awesome!

We're ready to be done with this cast business.

Tuesday, July 22, 2014

The ride isn't over yet..

Xray looked perfect. But so did the cast so we're leaving it on for 6 more weeks. In 4 weeks she has a mri to help decide what happens at the 6 week appointment. The upside,  someone else will only be taking care of her for only a week and a half when I have to go back to work. Fun.

Today's the day!

We find out this after noon what happens to the cast. My expectations are a second cast. My hopes are a brace.

But first off to wic to get these next few months worth of formula.

Oh and Pip is 8 months old today! 

Wednesday, July 16, 2014

We have a teething child.

6 days. 6 days and we'll go in to see the orthopedic doc. 6 days we'll have that magical xray to tell us how her hip is doing. 6 days and we'll see our baby girl's legs again. For how long, I don't know. She might go back into a cast. This is what I'm prepared to hear. This is what I'm preparing myself for. I did it for six weeks. But I won't be doing it alone for the last 6 weeks. I think I'll be going back to work in August. Hopefully part time so Lainee won't be in someone else's care for too long. She did recently have her first sleepover at her babchi's house. The next day I had to pull and replace all the gauze from her bandage because it was soiled. It could've happened on my watch, yes. But I felt bad that it happened on my mils. And the gauze smelled absolutely rancid. I also got a peek at her incision. It looks really good, nothing oozing (I would hope not anyway it was to be healed after 2 weeks, didn't smell after I removed the gauze. No redness and not painful for me to poke at. I shoved some clean gauze in there so the bandage wouldn't touch the incision and repaired the bandage with more bandage lol.

6 days and our baby girl will be 8 months old. 8 months. A lot has happened in that time frame. She's our everything even though she's a banshee. She's my baby girl. My one and only. My little boy's baby sister. And she's teething. It's sooo close to breaking the surface. She chews on everything. Her teething vs my son's teething 3 years ago. Man, I'd take an ear infection with every tooth over her being fussy and in a cast. But. We go day by day. It's gotten us this far. 6 days out of an answer.

I watch some things Alek does for Pip. And I love it. He's never trying to hurt her or seems jealous when I'm trying to do things for her. He's the best big brother any lil girl could ask for. I hope they have that bond for life.

Saturday, July 12, 2014

Not much longer!

So I stopped by my job (old job?) On Thursday after my Dr appointment - btw my lungs look great, just lots of scarring of course. And I'm no longer special, they had a mom on the ventilator guve birth to twins in her Icu room (not sicu like yours truly, which is even more rare but still rare enough). Anyway, stopped by to meet the new director and assistant director to say "hey I worked here and am probably coming back in September!". Well. Long story short, I might go back part time in August. Regardless if Pip comes out of the cast for good and goes into a brace or goes in to another cast. I got offered something I love doing, and if they'll let me be part time it'll be even better. Plus we just had to buy a new ac. Talk about inconvenient! And there was no fixing it. It's like 15 years old. So that cost on top of a single income household? Yeah. Things need to change.

Tuesday, July 8, 2014

Noooo sleep for the wicked, money don't grow on trees

So we've been trying a couple of things to get into a routine. And just when I thought I had it figured out, I get thrown through a loop. So. Here I am. 5 am. With a wide awake baby while the rest of the house sleeps.

I know I wouldn't trade being called mommy for any job title in the world. And I'm doing what I've wanted to do, stay home with my children. But it's getting tiring when I still do all the work and if I ask for help I get "you wanted this". Yes, well, if I wanted to be a single stay at home mother.. I won't go there. He provides money. Which is needed to run things around here.

Which is why I am attempting to work from home by being a consultant for Jamberry nails. Any extra income would be great. And if I can profit enough from it come September and not go back to work or go back part time I'll be happy.

Curious to what I'm talking about?
http://csweeney.jamberrynails.net/
Questions about the product? E-mail me @ csweeney14@hotmail.com

Saturday, July 5, 2014

Must establish a better routine!

How do you wear a child out that can't be that physical? One that is 7.5 months old but is doing things at a 5 month old's level (yay her adjusted age is 5 months today! ). Lainee has been the baby that slept from 11-7 after about a month of being home from nicu. Until the spica came along. Or growth spurts. But there's only been two of those so far. But since the spica she'll sleep more during the day and then get up a few times each night, or like tonight every hour on the hour since 1am - currently it's 4am. I guess I'll have to establish a better routine! Keep her awake longer and wake her from longer naps. This should be fun.

Only 2 weeks and 3 days left to see what were doing. Another cast or a brace.

Also, yesterday was the 4th. Our parents came over to swim and eat and then enjoy yard fireworks. It was a lot of fun. As much fun as everyone getting to swim except you, because you have to clip tabs off diapers to stuff. Yup.

Tuesday, July 1, 2014

Pity party, table for 1

My days have been consumed with swimming. We were given a huge above ground pool a couple of years ago and just set it up Sunday. So I'm teaching my 3 year old how to swim while Pip sleeps. Each time I get into the pool I want to pout. I want Lainee to experience it too this summer, and she can't. She loved the bath.

Also, my 3 year old is all boy. He has his sweet moments, where he'll grab my face out of the blue and kiss me. But thus kid doesn't want to cuddle and snuggle anymore. And the baby that's meant to do this is in this purple malformation. I just want to snuggle her again. I want her to roll over and sit up on her own. To try to crawl. I want her to get in the pool with us.

I'm so jealous of my friends who have kids a month or two younger/older than Lainee. One, because they don't have to deal with this cast. And two, because they don't have to deal with a preemie. Their kids are hitting milestones. I'm so ready for this cast to be off and my little girl able to do things other than stay in one spot all damn day.

/end pity party

Saturday, June 28, 2014

Piggy paint!

Since I was a little girl I've always wanted a daughter. And now I have her and can do her nails, and hair (when it gets longer). But this product, piggy paint. Love it! It's non toxic and dries in a minute. It's safe for even infant's that stuck their hands in their mouths. And it gives her time in the cast a more interesting one. :)

Thursday, June 26, 2014

Two weeks down.

Today makes two weeks since the cast had gone on. Yesterday I took Lainee in to have the bandage looked at. And the cast tech said the cast looked great! I kept mentally patting myself on the back there. Especially since I did not mention the poosplosin. Only 3 weeks and 5 days until her 6 week appointment. Hoping fir a good xray so we can get rid of the cast early and go to a brace.

Wednesday, June 25, 2014

First trip back to the dr. .

So at 1pm today Lainee will be squeezed in to be seen. I called yesterday about her bandage coming undone. They wanted her in asap to change it. Fun stuff.

Other than that we've been practicing holding our head up while on our tummy. Huge milestone.

Sunday, June 22, 2014

Poosplosion.

Lucky. That's what we were today. It took about a half hour but we did it. Just got done cleaning a poosplosion. Had to call in reinforcements, even. It was so far up the back side of her cast we had to use wipes wrapped around the flat end of one of her spoons. I cried. It's only week two of this. In one months time we'll be going to the doctor. I want a clean cast! It's bad enough the incision site bandage is coming up. We think daddy got all of the poop out. The wipes were coming clean and the antibacterial wipe was clean after it's sweep up there. Lucky.

Thursday, June 19, 2014

A week.

Not quite a week yet but close enough. Pip is slowly getting back into her usually routine. Just napping more than before. She's only getting up one per night for the past two now, also.

Alek and I take opportunity of her morning nap to get outside for a bit. It's not as hot as our house sits in the shade for a while in the morning and then again in thw afternoon. We'll be setting up the kiddy pool soon too.

I was planning on this post tomorrow, but the hubs will be off and I need to get a chest xray for my last lung appointment on Wednesday. Hoping this partially collapsed lung I left with 4 months ago is finally back to normal.

Tuesday, June 17, 2014

5 days in feels like fifty.

Tonight is ending day 5 of this Spica Cast.  We've definitely have experienced major hurdles so far. The biggest being food. Today she closed on 20oz and at least 2oz in food. But her temperament is becoming better. Sleep is getting better. I think if we have another day below 20oz I'm calling her pediatrician.

Monday, June 16, 2014

Doing a more normal routine..

Last night was rough. It started out as yesterday being rough. Hubby went to a new shift at work, Alek was home from his babchi's house for the hospital stay. Pip barely ate. She ate really well the day before 31oz when she only needs 28oz per her pediatrician. But she also ate from midnight. Anyway, she ate maybe a grand total of 18oz in 24 hours. Which made me worry. Because she'd eat 1-2oz every 2-3 hours and slept in between. She did eat almost the whole container (3.5oz) of apples I gave her and almost all the sweet potatoes. I gave in trying to push formula at around 10 last night. Gave her some loratab and spent an hour trying to put her to sleep.

230 she woke up. After many failed attempts of putting the paci back and rocking the pack n play, I made a bottle. Out of the 4oz she drank one and happily dozed back off. Until 330. Drank another one ounce. After that she got up every 15-30 minutes until 730. Then Alek got up.

She's been at least eating better for me today. And playing. As she gets more used to this cast I'm hoping she'll go back to sleeping 6-8 hours at night.

Needless to say, everything that I thought would be hard about this is rather easy, diapering, pain tolerance, carrying. And the things that I thought wouldn't have changed - feeding, sleeping - are harder right now (sucks to assume right?). Although, the one thing that I thought would've been decent was travel. I thought the dr would've made the cast at least somewhat fitting the car seat that's made for this. It was very hard to hear that the most likely way we were going to go home was to strap my 6 month old to the seat of the car with a belt. I'm really glad they got her to fit in the car seat.

Saturday, June 14, 2014

Comfortably numb

So everything I thought would be hard about this journey has been fairly easy so far. Poopy diaper? A breeze, compared to changing her and she pees as soon as I start taking off the diaper. Sleep? Got like 5 hours straight last night.  Moving her around? Awkward but doable.

Keeping her comfortable? .. well let's just say it's day two and momma had a meltdown. I dint know how to keep her comfy yet. And it breaks my heart. I can't just scoop her up and position her. It's by far the hardest thing about all this. I'm hoping by the end of the week it'll be easier. So far she does not like the bean bag chair.

→→
Another treatment.

☆Osteotomy

The term Osteotomy, in practice, refers to reshaping a bone. When the pelvic side of the socket is repaired, it is called “pelvic osteotomy”. There are several different types of pelvic osteotomy and the choice depends on the shape of the socket and the surgeon’s experience. When the upper end of the thigh bone is re-shaped, this is called “femoral osteotomy”.

Each of these procedures may be done alone, in combination, or together with a reduction. Children older than 2 years almost always need all three procedures to make the hip stable and return it to a more normal shape.

An arthrogram (x-ray dye injected into the hip joint) at the beginning of the surgery can help the surgeon decide exactly what needs to be corrected. Whether one or all three procedures are performed, the recovery time is about the same.

The child is usually in the hospital for 2 or 3 nights and in a body cast for 6-8 weeks. That is generally followed by bracing full-time or part-time for another 6-12 weeks.

For some osteotomy procedures, pins and plates are used. They are removed after the bone is healed. That may range from eight weeks for the pelvis to one year for the femur. Typically, they can be removed after a few months, but up to three years after surgery.

★Pelvic Osteotomy

Some examples of pelvic osteotomy surgeries used to treat hip dysplasia in young children are the Dega osteotomy and Salter (Innominate) osteotomy.

★Dega Osteotomy

The Dega osteotomy hinges the acetabulum (the socket) down over the head of the femur (thigh bone). This is done when the socket is too wide and too shallow. The socket sometimes gets worn down on the edge of the socket when the head of the femur rubs on the edge of the socket from being partly out of the joint. This osteotomy can help restore that worn down area of shallow socket. A similar procedure to the Dega osteotomy is the Pemberton osteotomy, which has a slightly different final orientation of the socket.

★Salter (Innominate) Osteotomy

The Salter osteotomy is often performed when the socket doesn’t sit on top of the ball at the top of the thigh bone (femoral head). The pelvic bone is cut and the entire socket is rotated into a better position on top of the femoral head after the hip is reduced into the socket.

Bones in young children can bend for this to happen and then they remodel after the socket is stable. This does not interfere with the size of the pelvis later in life. In these cases, the socket is round and may even be smaller than the femoral head, but the socket hasn’t developed properly and needs to be shifted so it can support the hip better.

This type of abnormal shape of the socket may be more common when the hip has never been in the socket and hasn’t rubbed on the edge of the socket.

★Femoral Osteotomy

Femoral osteotomy is done when the upper end of the thigh bone needs to be tipped so the ball points deeper into the socket. This is sometimes called a Varus De-rotational Osteotomy (VDO or VDRO). The thigh bone often needs to be shortened when the hip is dislocated high above the socket. This allows the ball to be lowered down to the level of the socket without stretching the entire leg and all the soft tissues like muscles and nerves.

When there is a high dislocation and this isn’t done, then there may be increased risk of redislocation and increased risk of damage to the growth of the hip. Surprisingly, shortening the bone actually stimulates growth of the leg so the shortening is almost always temporary as long as the hip stays in the joint and does not develop growth disturbance from AVN.

★Varus osteotomy of the femur

This osteotomy tips the hip into the socket and redirects the forces toward the middle of the socket instead of toward the outer edge of the socket. The before and after illustrations show how the forces on the hip joint are redirected by the osteotomy

★Combined Osteotomy

This is a more common procedure in children older than 18 months. One advantage of the bigger procedure is that all the elements of hip dysplasia are corrected surgically so that the time in the cast is actually less than waiting for natural growth to help restore the joint to normal. However, the bigger procedure itself should not be the first choice when less invasive methods might work as well in the long run.

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/child-treatment-methods/osteotomy/#sthash.5oxvNXpY.dpuf

Friday, June 13, 2014

11 weeks 6 days left hopefully..

But who's counting? Today we came home after about two hours of trying to see if Pip would fit into a car seat. She's managing pain pretty well. And since being home I've changed two diapers, one being poopy. It's decent to stuff on her right side, but her left is swollen and I can tell not comfortable for her when I stuff it in.

→→
Another treatment

☆Closed Reduction

This is the most common treatment for babies between the ages of 6 and 24 months. The doctor physically manipulates the hip joint to get the ball back into the socket while the baby is asleep under general anesthesia.

Occasionally, before the procedure, a few weeks of traction is used to stretch and relax the child’s ligaments before attempting the closed reduction.

After the child is put to sleep with anesthesia, there are generally four steps involved in a closed reduction procedure:

Closed Reduction Procedure OutlineArthrogram

Dye is injected into the hip joint with a needle so the inside of the joint can be seen on x-rays. This allows the doctor to verify the hip reduction and helps identify any potential problems that may prevent the hip from going into place.

Adductor Tenotomy

The doctor makes a very small opening in the groin and surgically releases the adductor tendon. This tendon is normally very tight. Releasing the tendon takes pressure off the soft surfaces of the hip and helps keep the ball in the socket after the hip reduction. The tendon heals very well, growing back like it does in an athlete that has a groin pull.

Hip Reduction

The doctor physically manipulates the ball at the top of the thigh bone (femoral head) back into the hip socket while monitoring progress by x-ray. The doctor uses x-rays to verify that the hip is in the best possible position before casting.

Spica Cast

The child is put into a hip spica cast. This keeps the hip in the newly aligned position while the joint heals, and encourages proper formation of the hip joint as the child grows.

Follow-Ups After Closed Reduction

Usually the spica cast is changed every 6 weeks until the child has been in the cast for 3-6 months. Improvement in the hip may not be realized until the first cast change. At the cast changes, an arthrogram is often performed to check on the progress of the hip joint. The total time in the cast depends of the appearance of the hip on x-ray with the arthrogram.

When the final cast is removed, the child is normally placed into a hip abduction brace for several more weeks. Since the child has been in a stiff cast for so long, he or she has temporarily lost muscle tone and some flexibility. The brace provides extra support, as a transition stage, as the child regains the strength and flexibility. During this time it is important to follow your doctor’s prescription, which will normally be to wear the brace at all times, except for baths, in the beginning. The brace allows for more hip movement than a cast, but the hip still needs time to grow and become more stable before the brace support is taken off.

After a few weeks in the brace, the doctor will begin to allow more time out of the brace for the child to further regain strength and movement. Generally, children seem to tolerate this process very well and they quickly catch up to other children in all of their activities.

After a year, when the hip returns to normal, it should be impossible to tell children who spent time in a cast from children who were never in a cast. This process is not always successful and sometimes problems develop during or after treatment.

Risks of Closed Reduction

Sometimes this procedure is delayed until visible bone in the ball of the hip (head of the femur) is seen on x-rays. There is some concern that the hip is too soft before this bone appears and the closed reduction may cause damage to the growth of the hip. On the other hand, waiting until the child is older may cause more stiffness and more abnormality of the hip joint, reducing the effects of treatment.

There is currently no scientific agreement that waiting for this bone to appear helps protect the hip from damage during reduction. Damage to the blood supply of the hip or damage to the growth plate can occur even during gentle attempts at closed reduction. Further, there is no way to know if this has happened for at least 6 months after the closed reduction. Fortunately, damage is not common but requires additional treatment later if it occurs.

The hip may not stay in the joint after the anesthesia wears off even though the child is in a spica cast. In some cases the doctor will recommend an MRI or CT scan in addition to x-rays of the hip after the child is awake to make sure the hip stays in the joint.

While surgery for your child may seem scary, treatment (surgical or non-surgical) gives the child the best chance for a normal hip and most problems that arrise can be treated if things don’t turn out as expected.

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/child-treatment-methods/closed-reduction/#sthash.6CGRUzKD.dpuf

Thursday, June 12, 2014

No clue.


The first thing I noticed this morning in Pip's pre-op room.

The alarm went off at 5am. I was up with Lainee every hour before that because of her paci. We went and got me some coffee, then made our way to the hospital. Checked in and waited to be called back to pre-op. I was doing fine until the anesthesiologist came in. I started crying then stopped. By 750 they were ready to wheel her back. We gave her kisses and walked solemnly to the waiting room. Which was smack dab in the middle of where I was 4 months ago. On one side was my sicu room where I had given birth to Lainee , and on the other side was where I woke up a month later and then spent my recovery time before rehab. I even saw 3 of my nurses.
At a little after 9 they finally called to let us know they started. Late. They had issues finding a spot for her iv and ended up putting it in her head. Then started the waiting game for surgery. 3 hours later they called to say we could come to recovery.
My eyes got teary when I walked in her lil room to her mewling pitifully. We waited with her until it was time for her ct scan, then walked down with her. After that we went to a room.
She'll jerk every so often and whine but seems to be adjusting so far.


Before surgery. Her hands forming a heart.

In her room. Today starts our (hopefully) 3 month journey with this.. thing.

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Another treatment. This is what happened prior to her spica cast today. Medial Approach.
•Open Reduction

This surgery means the hip joint is opened up to clear out any tissue(s) that is keeping the head of the femur (the ball) from going back into the acetabulum (the socket). There are two general approaches to this procedure:

Medial Approach

Medial Approach incision for open reduction of hip dysplasia
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Medial Approach incision represented by black dotted line.
This approach is normally successful for children less than one year of age. This procedure starts through a small incision in the groin (medial to the hip). This is a limited surgical approach that allows the joint to be cleared so the hip can be aligned into the socket.
This method is typically used when a closed reduction is unsuccessful and the arthrogram shows something in the joint that’s keeping the hip out of the socket.
This method cannot correct any underlying problems in bone structure
A spica cast is normally needed for a few months to keep the hip aligned, while it is growing and becoming more stable.





Anterior Approach

Anterior Approach incision lines for open reduction of hip dysplasia
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Anterior Approach incision represented by black dotted line
The anterior approach to the hip joint is used when the ligaments around the hip need to be repaired and tightened after the hip is cleaned out and aligned. This is used after the age of 12 months when surgery is needed, or for more severe hip dislocations.
Reshaping the hip socket can also be done through this approach.


- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/child-treatment-methods/open-reduction/#sthash.NS8yRUS8.dpuf

Wednesday, June 11, 2014

13 Hours.

We're on the road to Pensacola. I'm so glad the Ronald McDonald house had room for us tonight and tomorrow night. There's butterflies in my stomach already. I have no clue how I'll be sleeping tonight. As of right now, we have 12 hours and 38 minutes.

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Another treatment.

☆Hip Spica Cast

While the Spica Cast itself is not a surgical procedure, the spica cast is generally used after a surgical procedure for hip dysplasia. This is because the hip joint needs to be kept in the new, surgically repaired hip joint position to ensure proper development of the hip joint.

After application, the spica cast is typically changed every 6 weeks until the child has been in the cast for 3-6 months. Improvement in the hip may not be realized until the first cast change. While your child is in the cast, it’s best to pick him/her up from the waist while supporting the trunk and thighs. Some doctors allow use of the cross bar as a handle but others don’t because of concerns that the cast may break. Either way, it’s best to avoid picking the child up only underneath the arms with the weight of the cast pulling down on the hips.

At the cast changes, an arthrogram (an x-ray with dye) is often performed to check on the progress of the hip joint. The total time spent in the cast depends of the appearance of the hip on x-ray with the arthrogram.

After the final cast has been removed, the child is normally placed into a hip abduction brace for several more weeks. Since the child has been in a body cast for so long, it is important to “wean them off.” During this time it is important to follow your doctor’s prescription, which will normally be to wear the brace at all times, except for baths, in the beginning. The brace allows for more hip movement than a cast. This weaning time helps to reintroduce more range of motion to the hips while the hip is growing and becoming more stable.

After a few weeks in the brace, the doctor will begin to allow more time out of the brace for the child to begin to regain strength and movement. This process can be pretty stressful for parents, but the children generally seem to tolerate it very well. They quickly catch up to other children in all of their activities.

After a year, when the hip returns to normal, it should be impossible to tell children who spent time in a cast from children who were never in a cast.

This process is not always successful and sometimes problems develop during or after treatment.

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/child-treatment-methods/hip-spica-cast/#sthash.GuzFCoFq.dpuf

That is what Pip's having done.

Tuesday, June 10, 2014

36 hours and we'll be waking up to get ready for surgery.

Another treatment.

☆Hip Abduction Brace

Often the dysplastic hip of a newborn baby goes back into the socket very easily because the mother’s relaxing hormones are still in the baby. Doctors will normally use the least aggressive treatment they can to achieve the desired outcome.

When dislocated or unstable hips in newborn infants can easily be realigned, usually a brace or harness is used that holds the legs in a better position for the hip while the socket and ligaments become more stable. This encourages normal development of the hip joint.

Hip abduction braces are also commonly used immediately following treatments involving a spica cast. This time in a brace helps to reintroduce more range of motion to the hips while the hip is growing and becoming more stable.

There are a wide variety of positioning devices available, but the most common type is the Pavlik Harness. In addition to this, other braces called fixed abduction braces are commonly used.

The choice of device depends on the needs of the family and the treatment experience of the doctor. Most doctors recommend full-time wear for 6-12 weeks with any brace. However some doctors allow removal for bathing and diaper changes as long as the legs are kept apart to keep the hip’s ball aligned with the socket.

After the hips become stable, the brace is normally worn part time, usually at night, for another 4-6 weeks.

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/child-treatment-methods/hip-abduction-brace/#sthash.RQawMERn.dpuf

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In 36 hours we'll be waking up to get ready for surgery. Today, the preop registration nurse called to ask questions for anaesthesia. I was ready to cry once we hung up. It's not far away. And I have lots to do tomorrow to finish preparing.

Monday, June 9, 2014

Treatments for hip dysplasia

Non-Surgical Treatment Methods

These methods are most common when a baby is less than 6 months of age. They typically consist of bracing a baby in such a way so that his or her hips are kept in a better position for hip joint development. The goal is to influence the natural growth processes of the baby so a more stable hip joint is developed.

☆ Pavlik Harness

This is a specially designed harness to gently position your baby’s hips so they are aligned in the joint, and to keep the hip joint secure. It is typically used to treat babies from birth to six months of age.

Since it is almost impossible to secure one hip by itself in the harness, both hips need to be positioned in the harness even if there is a problem with only one hip. By positioning your baby’s hips in such a way that the hip joint is aligned and stable, it will help normal growth and development of the hip joint. There are several reasons why the harness needs to be used and the doctor will explain to you why it is necessary for your baby to be in one.

When starting treatment, most doctors recommend that the baby wear the harness or brace full-time for 6-12 weeks. Some doctors allow the Pavlik harness to be removed for bathing and diaper changes as long as the legs are kept apart to keep the hips pointed at the socket. Babies are checked every week or two to adjust the fit, check the progress, and screen for complications such as femoral nerve palsy. The doctor can adjust the straps as needed to fit your baby as he or she grows. Ultrasound or x-rays are also used to see how the hips are developing.

Some orthopedic surgeons use the stress test to determine when it’s safe to discontinue the harness, others prefer to use the harness for a pre-determined amount of time because of concern that stress testing may prolong the period of time needed for the joint to become more stable. In cases where there is any doubt the Pavlik Harness can be discontinued and a fixed abduction brace may be substituted. There are some reports that this may speed the development of the hip better than continuing to use the Pavlik Harness.

If the treatment is working, after the hips become stable the harness or brace is worn part-time, usually at night, for another 4-6 weeks. Even after that, the baby may need to sleep in the harness or another brace for a few weeks as a safety measure.

These differences in treatment depend on physician preference and seem to lead to satisfactory results either way. The important thing is to determine whether the hip is located in the socket. If the hip remains dislocated longer than 4-6 weeks, then the Pavlik harness needs to be stopped because continuing to use the Pavlik harness when the hip remains dislocated is very harmful to the hip.

After appropriate and successful Pavlik harness treatment, there have not been any reported cases of re-dislocation. However, there is the risk of slow or incomplete development of the acetabulum (socket). This means that the hip will almost always stay in the socket, but the socket itself may become shallow or insufficient as the child grows. This is why x-rays are usually recommended for follow-up even when the harness has been successful. Once the x-ray is normal, then there’s probably a 99% chance that the hip will continue to grow normally. Recurrence of dysplasia is very rare after successful Pavlik harness treatment and a normal x-ray at 9-12 months old, but most doctors still recommend x-rays at an older age just to catch any shallow sockets that might need treatment to prevent early arthritis.

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/child-treatment-methods/pavlik-harness/#sthash.4DyZkaHt.dpuf

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Last night I believe everyone in this house was getting the appropriate sleep except for me. I tossed and turned, then got on my phone. Then off. Tossed, turned. Finally I read some of my book. And I believe I put it down somewhere around 2am.

Today Lainee's referral paperwork got faxed to the Ronald McDonald house by the hospital. I'm to call tomorrow morning to get on the waiting list in hopes it'll be open by Wednesday night so we do not have to wake up at 4am to make the trip to the hospital by 6.

When I was sick and while Lainee and I had our stay in the hospital, tge Ronald McDonald house was so generous to my husband, and then myself when I got released and Lainee was still there. We were very lucky to have them! And they are in walking distance of the hospital.

Sunday, June 8, 2014

Not much longer..

More about clicky hips..

☆ What is a “hip click”?

A “hip click” refers to an audible “click” or “pop” that occurs when a baby’s hips are being examined.

When an infant has a “hip click” it does not mean that a baby has hip dysplasia. While some infants that have a hip click will be diagnosed with hip dysplasia, there are babies with hip clicks that have normal hips.

☆Why would a baby with normal hips “click”?

There are many ligaments inside an infant’s hip joint that can make snapping or popping noises in certain positions for many different reasons as the baby develops.

A “hip click” is just one sign that hip dislocation may be present in an infant. Further examinations and tests will be needed to know why an infant’s hip is clicking.

☆So what does a “hip click” mean?

An infant that has a hip click should be monitored for hip dysplasia. It is important for babies to have regular hip examinations during the first year of life. There are documented cases where the hips were normal at birth, but became dislocated in the first few months of life as the baby developed physically.

Even with careful physical examination, hip dysplasia can be difficult to detect in newborn infants. Further tests such as ultrasounds and xrays are normally needed to make a diagnosis for hip dysplasia or to be sure the hip is normal.

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/infant-signs-and-symptoms/hip-click/#sthash.rxciP298.dpuf

Saturday, June 7, 2014

Baby, you're a firework

More about Asymmetry, I believe this was Pip's diagnosis.

☆Asymmetry

Asymmetrical buttock creases can suggest hip dysplasia in infants but, like a hip click, an ultrasound or x-ray study will need to be done to determine whether the hips are normal or not.

Asymmetrical gluteal creases may be a sign of hip dysplasia in one hip. Thigh folds (seperate from gluteal folds) that are asymmetrical rarely indicate hip dysplasia unless they are associated with uneven gluteal creases.

When a baby’s hip dislocation is present for several months, the hips gradually lose range of motion and the leg appears shorter because the hip has migrated upward.

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/infant-signs-and-symptoms/asymmetry/#sthash.o4jwjYtO.dpuf

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Last night was more pirate fun and fireworks. Compared to my son's first experience - cue horror screams, Pip's experience went very well! She was attempting to eat when they started. I expected crying. She pulled away from the bottle and just stared. Big, beautiful blue eyes staring in awe at these lights in the sky. Didn't even care about the booms. She did get fussy halfway through because she was tired and hungry and couldn't make up her mind which she wanted. But overall she was decent out yesterday compared to how the day was at home. Makes the final of the pirate escapades. A skirmish between the pirates and the mayor. I'm sure Alek will love it! 

Friday, June 6, 2014

Keeping busy to entertain busy thoughts.

Sign of hip dysplasia:
☆ Swayback

A painless but exaggerated waddling limp or leg length discrepancy are the most common findings after learning to walk. If both hips are dislocated, then limping with marked swayback may become noticeable after the child starts walking.

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/infant-signs-and-symptoms/#sthash.AgNCBSU9.dpuf

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Yesterday the mil and I took the kids to a parade. It was Alek's 3rd and Lainee's 1st. She didn't even fuss at the fire trucks except for an older one. And then once for a float that had music that vibrated the ground. Alek on the other hand wanted one of us to hold him the whole time. Over all he had a blast and is looking forward to going back down to see a pirate landing tonight and fireworks. I'm curious to see how Lainee will do with fireworks.

6 days til surgery.

Wednesday, June 4, 2014

Sips happen

Last night I left Pip and the boy with the husband and embarked on a girl's night an hour away from home. Two friends (one fellow mommy), and I ate dinner then attended Painting with a twist. Where you eat(what you bring), drink(wine, or anything you bring) and paint. I LOVED it. I needed those two hours away to focus on something other than this upcoming surgery. Other than the fact I very well might not leave the house in 3 months other than to go to the dr.

I called the hubby, who hasn't been alone with the two for more than an hour, to inform him I was done and heading home. He was not... pleased. Both kids had screamed and fussed the whole time I was away. Hm. Maybe just those few hours away wasn't enough..

Another sign of hip dysplasia:

☆ Pain

Pain is normally not present in infants and young children with hip dysplasia, but pain is the most common symptom of hip dysplasia during adolescence or as a young adult.

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/infant-signs-and-symptoms/#sthash.F6WKk57q.dpuf

Oh and this is what I painted. Because we all know sips(along with other things) happen. :)

Tuesday, June 3, 2014

Complaining too much.

Just a sign today. Too many thoughts to wanna write down.

☆ Limited Range of Motion

Parents may have difficulty diapering because the hips can’t fully spread.

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/infant-signs-and-symptoms/#sthash.r2Ha3OTx.dpuf

Monday, June 2, 2014

Milestones, shmilestones.

Milestones. What are milestones? Well if you have a kid, or have worked with kids you'd know milestones are the little (and big) things that kids do in a certain timeframe. Smiling, babbling, sitting up etc. But if you're a mom to a preemie, EVERYTHING feels as if it is behind. Depending on how early your lil one was, is how behind they might be. Or they might not be behind at all. Every baby is different.

Now my son, Alek, did lots "early". He held his head up without support at 2 months, walked at 11 months. But he wasn't "talking" before two. He was saying like maybe 6-10 words. Me, comparing him like a horrible mom to the kids at the daycare I work at, was upset. But that day, the day he turned two, he walked up to my brother in law's dog. He pointed at and named nearly every body part on the front of that dog while the hubby and I stood there speechless. From that day on, he hasn't shut up. And he is the typical 3 year old now.

Lainee. Lainee has had great head control from when she was born. My husband told me when he had to do kangaroo care with her when she was 2 lbs 12 oz. He was so freaked out because she kept lifting her tiny little head off of him and holding it there for a while. She was supposed to still be in the womb. Now, when she was 4 months old (1 month adjusted) she started to smile socially. Then the next month she started babbling and giggling when she wanted to. She's 6 months right now and had been chewing on her hands finally. She is attempting to roll over but my heart doesn't want to be fully happy when/if she does in 10 days. She pulls herself into a sitting position from a reclined position in my lap. But, on her tummy, she just lays there. She doesn't really attempt to hold her head up or push up on her arms.

When I see friends with babies born (full term) around when she was doing all this stuff she should be doing for a "normal" 6 month old I get jealous. I get sad. I especially get mad at myself for getting sick and having to have her so early. And now, I wonder just how far "behind" my early girl will get from being immobile for three months.

Another sign of hip dysplasia:

☆Hip Click 

Hip clicks or pops can sometimes suggest hip dysplasia but a snapping sound can occur in normal hips from developing ligaments in and around the hip joint. 

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/infant-signs-and-symptoms#sthash.6YfGnSmS.dpuf



Sunday, June 1, 2014

The countdown begins.

Today makes the 1st of June. Not counting today, we have 11 days left until she won't be able to kick and wiggle for 3 months. Last night I had her in the baby bathtub and she was just wild. Giggling and splashing wild. I loved it. But it also made me sad.

I think I'm going to try to post something a day on hip dysplasia - a sign, a fix. Since it is hip dysplasia awareness month.

Signs of hip dysplasia:
☆ Asymmetry

Asymmetrical buttock creases can suggest hip dysplasia in infants but, like a hip click, an ultrasound or x-ray study will need to be done to determine whether the hips are normal or not.

- See more at: http://hipdysplasia.org/developmental-dysplasia-of-the-hip/infant-signs-and-symptoms/#sthash.OFifuFm1.dpuf

Friday, May 30, 2014

About Pip.

Pip, or Lainee, arrived 11 weeks early into this world. She was due February 5th, 2014 but had to come November 22nd, 2013. I had h1n1 and pneumonia, resulting in coding on November 22nd while trying to clean out my lungs and attempting to take me to the OR. So, Lainee was born in my sicu room at 5:06pm, 3.3lbs and not at all a concern. I remained in a coma until December 23rd. But I finally got to see her in January. I got released January 16th and she got released one day before her due date.

I finally decided to go back to work at the start of June. That is until our Dr appointment for her hip changed my plans.

On May 23rd, one day after she turned 6 months, Lainee had a hip xray. I was optimistic that it would be nothing. Or maybe just needing a brace. But when the Dr came in and started talking, my hope flew out the door. Lainee had a dislocated hip. Her left, to be more exact. And surgery is the only option. He kept asking me, like every other Dr I've taken her to, if she was breech when she was born. They stare at me when I tell them I don't know.

So I explain the story for the millionth time, get the "wow you've been through a lot" and sympathetic smile. He tells me, while Lainee is screaming in my arms, about surgery. And a cast. A cast that will have to be from her armpits to her ankles for 3 months. No baths, no rolling over, no trying to move.

I felt the room spin. But we had an answer. And we caught it earlier than most. Not early enough for just a brace, but early enough. I left the Dr with some questions unanswered, but understanding enough.

This past Wednesday, she had an ultrasound on her hips. The tech got her hip to pop in place for a minute! That, gave me hope again. She said the socket is at 58% which is supposedly really close to normal. Again, makes me hopeful that this little girl will only need one surgery. The only thing stopping her hip from staying in the socket is her muscles that have grown to how her hip is dislocated.

So on June 12th she'll go in being able to wiggle, then come out immobile for 3 months. This blog will help serve as my outlet, and maybe help for other moms who have to go through this.