Freedom has never tasted so sour..

It's been 14 months since I last posted. Not much has happened. Pip has been in the rhino brace for naps and bed since the last time I updated. She started walking in May around her brother's 4th birthday which we celebrated in Disney. In October this year we went on a cruise for Halloween. Both kids were Captain America and American Dream. I quit my job at the daycare and started cleaning at night for the same amount of money and less hours and I get to stay home with my kids in the daytime.

We always knew she'd need another surgery.. just not so soon.. Today I took Pip to her follow up since she turned two in November. She did great. She walked into the room by herself and let the nurse measure her and weigh her and take her temperature without even batting an eye. Then she walked to the room by herself and let me put a gown on her. Then it was time for the xray, she walked to the xray room by herself and it took a little coaxing to get her on the table but she did wonderful. The xray tech held her legs in position. And I knew something was up when they came back for more.

Back to waiting for the Dr. When he finally came in he had us walk down the back hall and then he examined her legs. He kept saying "hm.." .. well, apparently her left leg - the one that was dislocated - is longer than the other one which is odd with ddh. But also that the socket is still way too shallow.. So, that means one thing..

Drum roll please...

Another surgery. He said this one, he will make an incision on the outside of her thigh and cut her femur to get it into the socket better to hopefully form it. This time the cast should only be on 4-6 weeks but I'm not holding my breath. I'm just ready for this to be done. I'm ready for no more surgeries, no more casts. No more worrying when she's sedated and on the operating table. No more seeing my baby in pain after. But I guess we gotta go through all this to have those healthy hips.

Her MRI will be scheduled asap and then surgery will be soon after. I think it's going to be harder this go because she's losing her mobility. And she can comprehend more. Hopefully it'll go quickly, kinda like last time.

Oh and her rhino brace is kicked to the curb. For 14 months now and it isn't helping at all. Dr said it was up to us and I would like to let my baby sleep comfortably while she can.

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.

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.

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.

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.

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.

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.

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! 

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.

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.

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.

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

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. :)

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.

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.

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.

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.

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.

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.

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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