Deception. Acceptance.

Found out a few things today. One is I can't stop myself from verbally spewing in conversations. I kept interrupting the poor guy when he was going over Pip's MRI. The hubs even interjected to shut me up.

Anyway.. according to the MRI, her thigh bone is completely discombobulated for lack of a better word. The femoral head is at an angle that isn't normal. When her knee is straight, the head doesn't sit properly in her socket. And so, this must be fixed. So in less than a month (3 weeks, 5 days but who's counting?) she'll be having a Varus Derotation Osteotomy. He'll go in through the thigh and clean out her socket - more on this later - and then cut her thigh bone and then use pins and a bar to put it back together. Then he'll angle it the correct way and close her back up.

Then there will be 3 outcomes. First, and most probable she'll be out in a cast. Downside: Boo, cast, hiss, heavy, immobile, awkward shaping. Upside: immobile(I'm liking this idea for two reasons - no more taking off her diapers and she won't be able to reach the wound.) Plus if she is in it she can't walk so it'll be healing a little faster I'd think.

Outcome number two, which I'm not holding my breath for. She might come out with no cast. Hubs said you should've seen my eyes when he said that! I bet shock and hopefullness were all over my face. 51/49 are the odds. Upside: no cast yay! Downside: um.. what if she tries to walk? What if she falls? She'll most likely try to pull off the bandages. :/ there's a lot of why I think I might take a cast over not, as long as it's not 4 months again.

Last outcome - rhino brace. No cast just put the brace back on her. Okay I could do this one easy. But it still gives her access to the bandages and she knows how to walk in it. Bleh. We'll cross these bridges when they come I guess.

I also found it today that he never did an open reduction. He did a closed reduction. He only cut her open to cut tendons so he could do the reduction. News to me. I was always under the impression this past year that he did an open reduction. Ugh. Made me lose a little trust with him. But not enough to go elsewhere.

So the wait begins. He said it wasn't an absolute hurry to get in there but not something to out off for months. I told him beginning of next month is good with us. We're going to Georgia at the end of this month to see family but I don't want to wait past February. On January 27th we'll go back for pre-op screening and then back on February 8th for probably a two night stay. Gotta have them fax stuff to the RMH for Sunday night, Monday and Tuesday nights. And I know one of us will stay with her the other at the RMH.

Reminiscing can be dangerous..

I've been on a child hip dysplasia Facebook group every since we learned of Pip's diagnosis. They're been SUPER helpful in all my worries, with all my questions, and all the success stories. But a lot of posts cause me to reflect on our progress, our background and our future. I know when I started this blog, I gave a short background of Pip's birth and why(My story of why is on my Facebook), So I won't go into everything. I just want to go back to that day.. The day I don't know about what happened.. The day that no one really does, I'm sure it was a blur for those doctors and nurses as well. I know - from what my husband told me - I was terrified. They had to sedate me to clean out my lungs and put me on a respirator.. That's all that was supposed to happen. Unfortunately my heart couldn't handle it and stopped. So, they had to perform an emergency cesarean sections right there in my SICU room.They had time working against them and had to get the baby out, I'm sure. Any means possible. Hell, my scar runs vertical, not horizontal like my sons'. And it's crooked. Minor things really, even if I complain.

I'm sure Lainee was breech. I was just starting my 29th week of pregnancy, she was still really little and all over the place. I'm pretty positive she wasn't where he could grab her arm or head.. I'm sure it was her left leg. But she got out safely and we both made it past all this without any major complications. In the NICU, my husband and mother-in-law said that she always laid stretched out.. And in all her pictures she's out straight. Barely curled or any different position. And she's always been stubborn, so I'm sure she didn't let anyone manipulate her legs in many ways.

Let me add - I'm not blaming anyone, the doctor or nurses.. The only person I blame is myself, but I can't even do that 100%. People get sick, I get it. It could've happened even if I got my flu shot. I just try to go back to reason - mostly with myself - that this just happened. That things, big or small, just happen sometimes, and there's no stopping them. No "if I could go back.."s.. I don't know if her hip dysplasia outcome would have been different if I could go back. I know I'd get a flu shot, yes.. But would that have helped her situation now? The prematurity side, yes possibly. DDH? Who knows.

Tomorrow we go to follow up the MRI she had a week ago. And I'm sure we'll set the dreaded surgery date. In a way I'm looking forward to hr being immobile. She's really ready to start potty training.. So ready she'll strip her pjs off and diaper when she wakes before us in the mornings.. One morning was a nice poopy surprise. She also asks to go potty.. But once in there she'll sit for a minute then want off. It's a start, and I'd love to welcome it.. But I really don't want to push her to doing this just to have it taken away in a few weeks and her to possibly lose interest in returning to it once the cast comes off. So, we'll hold off.

After, and kinda before, the appointment in December I'v been paying close attention to how she walks. And she teeters a lot.. Which now makes much more sense since her left leg is longer. So part of me knows this is for the best.. But part of me still wishes it'd all be different.

By now you should've somehow realized what you gotta do

My alarm went off at 515 this morning. I got up, got ready, got the hubs up and then went to get pip up. She really isn't a morning person. I mean, she's get mother's daughter for sure! She'll Sleep until 8 if not later if we'd let her. I love sleep, too.

Everyone was in the car by 545. Alek was at pop's overnight so he wouldn't be up so early for school. We headed to Pensacola. And with it being so early, we got there about 30 minutes early. So we took a longer route and got there with about ten minutes to spare.

Second to check in, and once we got checked in we got straight into the room for pre stuff. The nurse and I talked a bit about how this wasn't our first rodeo. She was sedated 3 times before this. Once for her first MRI and then for surgery day and then once again for cast change. So I wasn't worried(too much) about that. I was worried about how she'd do leaving us. And well, she did better than either of us expected. But then again it only takes under 30 seconds to be knocked out by the gas they give.

So at like 810 I strapped her into a little pink car with kitty it only took a little protesting, and she was pushed into one door while the hubs and I left out the other. I got teary eyed and about 5 minutes later the nurse came out and told us she did fine and they'd call us when they were done.

We went to the cafeteria to get food and ate while I informed everyone. By quarter of 9 we headed back to the waiting room to wait another hour. Little to our knowledge as soon as we sat down, my phone vibrated. They were done and we could go back to the recovery room.

She still needed to wake up on her own so we sat there and talked with the nurse. About a few things, pip being a preemie, our whole ordeal back then, and our hip journey so far. She woke up about 930 and immediately grabbed the oxygen mask and handed it to me. Then pulled at the oxygen monitor on her toe. The nurse removed that and the blood pressure cuff and of course Lainee's hand flew for the IV. I stopped her and she got mad, but I kept telling her the nurse would get it out soon. She did and wrapped gauze around her hand rather than a bandaid and Lainee wanted that off too.

By 945 we were back in the car and heading to get her some food. And to think that would have been about the time she'd be going in for registration. So glad we took the earlier offer. Now the next appointment will be on Wednesday. And the nurse brought up an interesting question... If he cuts her femur to shorten her left leg, what if the right leg grows longer later?

Hoping for quiet thoughts until then.

Not much longer..

Today(yesterday?), was interesting.. It all started with a phone call before I even got out of bed this morning.. last week I suspected that pip had an UTI. Her diapers started smelling really fowl and she cried "boo-boo" and pointed each time she peed. It was just over Christmas weekend, of course, on a Sunday. I loaded her up on cran-grape juice and who would have thought, the smell and her fussing went away for the most part. She complained a few times on Monday and so I got get an appointment.

Now, for a toddler who isn't potty trained, getting an urine sample meant catheterization. And the Dr didn't want to risk giving her an infection if she didn't have one and sent me home to get a urine sample via toilet. Pip is pretty ready to be potty trained.. but we have decided to wait until after this next cast. She shows interest in going, but never sits long enough so I thought this would be a pain and not easy to get. I was wrong. That same night we got a sample! The next day we took it to the lab.

This morning I got the phone call saying yes, she did have a uti. Cue the mini freak out, and the only question that pops into my head: "this won't affect her mri on Wednesday, right?" The answer was no, it shouldn't.

Our son also went back to vpk, so for the few hours he was there the hubs took me and pip shopping. She loved taking the escalator with daddy! We had both kids stay with my parents for a few hours to catch a much needed date day after that. We went for Mexican and then saw The Force Awakens. :) I loved it! While at lunch, I received a phone call from the nurse for the MRI. I thought it was to go over medical things.

Wrong! They wanted to switch her and an adult patient before her. Putting pip in earlier, fasting less, and getting done quicker. <Cue mental happy dance> I immediately called the nurse back and accepted. This also means getting up at 5am and making the hour drive over to get her checked in at 7. Oh well. She also takes up two time slots.. why? I'll have to ask. So she'll go back at 8, and we'll probably get to see her at 1030. So no hangry toddler running around at 10am!

I'm also going to bring up the fact that I want one of us to be with her until she falls asleep. She'll be anxious and possibly scared of the new people and place. And I'm sure she won't let anyone take her away from me while conscious! She barely lets the hubby do it. Haha. I'll also be asking the day of surgery for the hubs to accompany her until she's asleep. I would, but if it's anything like last time I'll be barely holding myself together.

So, here it is almost 3am and I'm starting to fret. :/

Making peace with all the hip dysplasia is a struggle, yo.

Soon, but not soon enough..

The holidays mean spending time with family, shopping, baking cookies.. not worrying about when or if the scheduling nurse will call. Today I played phone tag with her while we were, oddly enough, sitting right in front of the hospital. Pip's MRI is scheduled for January 6th. And then the follow up with the Dr on the 13th. I'm assuming surgery will be in the beginning of February.. we'll get to that when the appointment comes. At least the scheduling part is done. And I just have to worry about the no food or milk for 8 hours prior, and then nothing at all after 7am. She'll be cranky that's for sure. It'll be a while before she can eat/drink. Like why are you starving me mom!? :( it'll be tough.

Hopefully surgery will be first thing in the morning so it'll be a bit easier. So, I suppose I'll try to enjoy my holiday and tackle my nerves in two weeks. I'm just worried that my independent two year old will be a nightmare when her independance is taken away for a bit.. wish us luck!

Shut up, mind.

No call from the Dr yet about that mri. I doubt it'll happen before next month. Christmas is a week away. I should be excited, happy. My father in law said we need a second opinion. I wouldn't even know where to start but it has crossed my mind quite a few times. I think if I could see all her xrays it'd be different. I'm thinking next trip I'm going to ask to see them. My husband will call me overreacting I'm sure. But I think for me to better comprehend these surgeries... I peek at them when they are on screen but I really don't know what I'm looking at. And instead of showing me xrays, the Dr draws it out on the table. Like... Wouldn't it be easier to show me an actual thing?

Thoughts like this make me wary of what he's telling me.. like is it really what he's telling me or does he just want more surgeries, more money, more discomfort for my baby and family. Yes, this is very negative. But I never said my mind is always a happy place. It usually isn't. I'm still working on this.

They always tell you having kids is hard.. But worth it. We found this out to be true while pregnant with our son. Halfway through the pregnancy we found out he only had a two vessel umbilical cord. Multiple problems can come with this. Mostly with the heart.. after a few weeks they thought he had an aortic kink. Many, many ultrasounds later we were relieved that it turned out to be just an enlarged ductus. Worst case scenario was surgery to close it. Never happened like that though. His heart is nearly perfect, just blood flow is backwards. No surgery needed, no precautions, just gotta know.

Then, with Pip. Oh man. I think I still kick myself in the ass for this one. I still blame myself, and I probably always will. I know she's healthy - besides her hip - and her health was never an issue. But she shouldn't have had to come early. And that could very well be a reason why her hip was dislocated. Which, in the end boils down to my fault.

No pity party. No saying it's not. My mil and I were talking tonight. Pip had to be born when she was because I coded. Dead momma, dead baby. And little time to react. Hell, no OR for the procedure either. They had to get her out and fast. So, maybe she was breech. Maybe, just maybe the Dr pulled her out by her left leg a little too hard. Dislocated it. But no one knew. Or thought to check. I'm not blaming him. He saved her life. This is minimal stuff to go through because I have her here with me. But, once again my mind isn't all rainbows and unicorns. And I ultimately blame the person who probably could have prevented all of it at the beginning: me.

As I lay here, staring at her monitor, watching her sleep.. I just want to go in there and lay with her. Snuggle her and tell her we'll get through this. Together. But it wouldn't be for her, she has no clue what is going to happen. It'll be for me.

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.