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.

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.

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:

https://www.facebook.com/notes/crystal-sweeney/our-story-refusing-the-flu-shot-2013/10152891898342224

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.

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.

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

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.