Alright already...

Wednesday, October 18, 2017

So what was actually a great day had a very ugly end to it .. my sleeping habits have gotten completely out of control .. I’m lucky if I get 3 hours and unfortunately I can’t even blame harlow saying she’s keeping me up it’s my brain.. my overthinking, overannoying, brain. I’ve even noticed I am becoming extremely paranoid at night when I go to bed and seriously think of all the ways I may have cancer or some sort of thing that will kill me . Never in a million years did I expect this part. This wasn’t in the parenting manual. Why did like get so SO real? I was so carefree before all of this.. harlow .. diagnosis’s.. therapy.. doctors.. and how in the actual hell is my 12 month old daughter braver then me? I’m her mom I’m supposed to be able to do it all? Why dose it seem like if I could give harlow my brain It wouldn’t even be a thought process but getting something that could kill me is petrifying? I don’t get motherhood I don’t get why it has to be a roller coster? Tonight was a really hard night for me I couldn’t get out of my head and I tried everything it ended up costing me a large chunk of my sanity after going for a walk taking a bath cleaning the appartment all at 1 am I decided what better way to get my mind off of things then to take my extentions out? I need them redone so perfect.. not perfect.. I tried tape ins for what now will be the final time so they are a pain to get out I have the solution I let them soak while I ran the bath started working on them some came out no problem others not so much . I started thinking about all the bullshit I have been thru recently all the hard times all the times that I wasn’t able to fall apart all the times I felt like I had been socked in the gut all the sleepless nights because of worry and before I knew it I was actively ripping out my extentions.. oh yes I’m not being over dramatic fulllllll on ripping.. by the time I was done I realized I had bald spots everywhere.. I sat down on the bathroom floor still unable to cry for whatever reason that may be.. and just thought why? Why is this happening to my life? It’s like I love harlow more then anything and I will do anything for her but why is everything such a exhausting mission to do? Why is it all over the place why does it cost a fortune why is everything a gosh damn battle? I feel like I’ve been fighting with someone for something every day for the last 12 months if not more I’m so tired of fighting but let’s face it this is just the beginning they say you can only bend so much before you break well I really think god thinks he made me out of silly putty Cus I’m still bending but I feel like I’m going to break soon I just don’t have the time to fall apart bobby can’t do what I do and I can’t do what he does we’re all a team .. oh life when the hell did you get so hard...

Um Im scared of what?

Wednesday, September 20, 2017

Who would have thought that on top of becoming a mom i would become scared of LIFE? Ugh everything freaks me out now what in the hell?? i never used to over think when i would die but now its all i wonder about because I'm so worried about harlow and what will bobby do and will he remember her meds and so on yes i know this is being a mom but ummm i didn't know these thoughts would join me! also the slightest side pain and i must be dying because god forbid i have a sore muscle... life got tooooo real out of no where I'm a champ when dealing with all things medical with harlow now days but when it comes to me all bets are off I'm some how falling apart in one way or another. Do you know how many germs are on ... everything??? ugh what issss this when did i get old when am i going to be able to go back to being 21 not a care in the world other then what bar i was going to that night (no I'm not a alcoholic for the record lol) i think just learning about how cancer happens or how these rare genetic conditions come out of nowhere its like every where you turn something scary happens. Like how the world is supposably coming to a end in 2 days. i mean come on no one can predict that but now I'm like omg if something happens i need to be able to charge harlow pump if i can't charge her pump i need to make sure i have a big enough syringe to be able to feed her till i can get power. ugh i may as well go live in the middle of no where and live off the land and not know what is going on in the world just take my chances lol. so THIS is why they said never to grow up. Peter pan had the right idea let me tell you.

 okay okay on to less hypochondriac things. So huge news harlow hasn't had a spazzum since she started her new meds last week this is huge!!! she's had them since she was born. The cbd oil helped bring them down to begin with from about 15 a day to 2-4 a day but now none... i don't want to jinx it but holy crap this is the one thing i prayed and prayed for to go away. Next is the stiffness... its not nearly as bad as it was but i want to be able to just cuddle her and relax with her with out having to force it lol. She relaxes after a little but it makes you not want to cuddle with a board basically. So as for now she's working on learning to sit on her own and balance learning to not be tense and use her hands all of which we have seen improvements on. Esp lately I've really started seeing improvements in her attitude as well as she knows how to make sure she gets picked up if she really wants to. she throws fits if she doesn't get her way and she will let you know when she's done doing something . these are all cognitive thoughts i might add! she shoved a toy in her mouth today and honestly i don't think it was on accident for a change. i gave her a empty eye liner box to hold on to and she moved her arm and kept a grip on it which again huge.

  Her therapy seems to be working and our encouragement hasn't gone unnoticed thankfully . sometimes i feel like I'm running around with my head cut off. going here going there doing this doing that staying up till all ends of the night. I'm so grateful for it tho. i really do love my life . i have moments do not get me wrong but to look back and see where we have came from? it makes everything so much more cherishable each and every single thing we have gone thru has been worth it to have her here. I don't pretend like her diagnosis doesn't suck because would i love for her to be crawling around getting in to things screaming in the middle of the store embarrassing me putting crap in her mouth she shouldn't be.. of course i would love for her to be smiling at me and laughing sitting up on her own grabbing on to enzo and hugging us back it seriously gives me butterflies to think of that life that seems so long ago that i imagined for ourselves. its very hard to acknowledge that that will never happen. it will never be how we want it but slowly but surely those images and dreams fade and new ones grow. I've learned to not look in to the future to avoid going thru these moments again because this grieving section of this life is beyond annoying its just drags and drags on. As bumper stickers and aa slogans go "one day at a time" .. but in all seriousness you have to learn to laugh at the crappy situations i know some probably think heartless at times.. its not that you just learn you can't be sensitive to the small things " don't sweat the small stuff" thats my bumper sticker.

Welp as usual i suck at blogging lol i hope i can look back on these and be like oh i remember that instead of what happened between July and September?? yea and don't ever expect me to have amazing punctuation or grammar I'm more of a what you see is what you get kinda girl as in yea I'm not going back thru and making it perfect lol i like to write as if I'm talking to you and so it comes off at times confusing but i feel like maybe its a bit easier to see the type of person i am a little better when i do things this way. I'm not perfect not even a little bit but i will always be honest and truthful and never fake, that was the deal from day one if I'm going to share our journey I'm gunna share the truth.

Welp I'm going to get back to orders myyyy favorite time of the night when everyones asleep i get to watch my show and drink a angry orchard while i package orders up. Ahhh peace and quiet <3

Bye guys!
xoxox

oh life

Sunday, July 23, 2017

Yes I'm amazing at bloggingggg.. not..
Lol sorry guys I get so wrapped up in life I forget to slow down and write about it. Well lately Harlow has been stiff and cranky again we're praying it's just her teeth and that's her way of telling us cus I don't know what else it could be? It's super frustrating not being able to help her and the only thing that seems to work is leave her alone which sucks cus I want to hold her and be there for her but clearly she's little miss independent .. oh life when did you get so damn hard? Life has become so much more real to me now not that it wasn't real before but the " oh that won't happen to me" happened with my dad and my daughter so I'm so scared of something happening to me or bobby now for the most part we're some what healthy I mean could be worse but could be better who seriously follows the food pyramid these days? I have had a problem with my left shoulder for years now and it has been progressively getting worse to the point where it's all I can possibly think about because it's always hurting but I'm too scared to get surgery because I can't not be there for harlow n bobby ... also this is where knowing my family's history would come in handy but we've already been over that never gonna happen so I guess I'm officially a mom now worrying about everything seeing things different and seeing how everything can possibly hurt you so this is fun lol.. I love my life tho don't get me wrong I think of all the times before harlow was here and how easy things were but it will never compare to her being her and how much love we have for her it's worth every second sometimes it's funny when we go to dinner and are hooking her up to her tube and it's like wtf is going on how did we get here?! But I am greatful for all I've learned so far and it's only been 9 months I can't wait for what else I'm gunna learn I'm starting to really like the new me I catch my self wanting to help others so much more and being more kind to strangers I don't judge in my head like I used to (face it we all did it at one point) I'm able to think I wonder what's going on in that persons life instead of thinking oh gosh why are you being so dramatic don't get me wrong I still have my moments where I get annoyed by random stuff but I am still a girl I still get crazy once a month lol! My post partum seems to have jumped in to the back seat again thank god cus it rising shot gun was really annoying but if I've learned anything it's not over just yet whenever I think I've kicked it and I'm finally happy and content it rears its ugly face and says oh let's have some fun shall we? I hope it stays away but who knows I know I still have my down days and says where I can't stand this happening to Harlow but they don't come as often as they did before so I'm greatful for that... I think that's all for now talk to you guys later! ❤️

Just keep swimming

Monday, July 3, 2017

Ah so per usual I suck and writing blogs this is why I am not a blogger I would have been fired long ago if I did this for a living lol... but I seriously never get a moment to just sit and write anymore I used to love to go to barns and nobles and just write (I have attempted writing 3 books now) all of which I never finished can you believe it?! I can lol it's not that I don't finish what I start even tho that is exactly how it sounds it's just I get stuck or side tracked and it dosnt seem that important yada yada yada but this however is very important to me so I should be better at it butttttt I'm not lol as you have all learned by now I have a slight issue with always being in a rush I haven't figured out if that's me or the coffee at this point lol but I'm writing now so let's get started shall we?? Harlow had her first real real pool encounter today she's dipped her toes in before but today she went all the way passed her belly which is huge because one she hates water and two she hasn't been fully submerged since before her gtube! So it was really cool to do somthing normal for a change not tip toeing around the damn tube like always. So yea she hated it but towards the end I really noticed that she was starting to come arround to the idea but then started having some infant spazzums sooooo that could mean the water was to stimulating or it was just to much for her to comprehend at the time ether way I will not give up because one you can't not like the pool and two swimming is amazing for therapy of course if it continues I'll never force her to do somthing she's not comfortable with but we gotta give it a solid try. Other then that we have a good feeding routine going thank god no more wake up every two hours to start or stop the pump now we feed thru the day and let her tell us at night when she's hungry and trust me she lets us know if she is but so far so good about 5-6 hours a night of sleep and that is huge for all you mamas out there you know what I mean lol let's seeeee I really don't think I have anything else I mean I know I could give more details hut in all honesty I'm super tired lol night guys 🦄🖤

Worlds Worst Blogger At Your Service!

Monday, May 29, 2017

Yup its me the worst blogger ever! but like I've said before this is more or less a diary of harlow's journey.

So where did I leave off, Mostly you guys follow  me on social medias so you pretty much know what is going on but for those of you who don't let me catch you up!

The last time I wrote in here was the night before harlow surgery. It went great she's a little trooper the surgery was a success the acid reflux has been stopped in its tracks as far as I can tell she is no longer having any issues with it. She had a fundo done which is when the wrap the stomach around the esophagus so help keep everything down and where it belongs. The reason for the tube is because since nothing can come up thats including air. So in order to help her burp she needed it but also harlow has been having a really hard time putting on weight so for now she's on continues feeds thru the tube until she's able to gain weight on her own. This is due to her keto diet (see link below)

https://en.wikipedia.org/wiki/Ketogenic_diet

Long story short she can't have sugar... none what so ever so she's forced to gain weight in fat and carbs which is harder then you think. So that has been a huge pain in the ass for quite some time now and caused all this to happen in the first place changing her diet and formulas so many times really messed up her stomach and intestines. But the past Is the past nothing we can do about it now it just would have been nice if the Drs had paid more attention to it...

Our hospital stay lasted another week after her surgery and lets just say I don't miss it but I do I don't miss the hospital or all the scary stuff that goes with it but I do miss the constant help I'm not going to lie. Having her home now has been a huge readjustment. She having the tube makes everything 10x harder because she's constantly being feed thru the tube so I have to take it everywhere I go and I mean everywhere its not horrible its just harder to get ut the door quickly. Second its hard because you have to keep a eye on her and the pump of she's out of food it will just continue to pump air in to her belly and I can't out a whole lot of food her bag because it needs to stay somewhat cool. so as usual my balancing act continues...

Harlow refuses to eat out of a bottle now and wants nothing to do with her binki. For this mama it is very hard to accept because that was the first thing she learned how to do when the Drs said she wouldn't so its hard for me to let it go. She is teething however and some babies don't want to suck because it hurts. she also got thrush (link below)

https://www.babycenter.com/0_thrush-in-babies_92.bc

So if its not one thing its another right?
Harlows Tube is healing good except its protruding out which means the skin on the inside is comping out of the hole its super gross and annoying hopefully it stops cos it is not fun to deal with.

She had her testing done with the therapist last week and she is still at a newborn level at 7 months old its hard to stomach that but at the same time the test doesn't take in to consideration her vision impairment. so the test is really inconclusive. Also everything that happened with her stomach caused a huge delay because she was doing great and at the level she should be at that a normal baby would be at so this is why I'm able to have the faith I do because I know she can do it its just going to take time.

The dr did however say she is having cognitive thoughts which is HUGE! that means she can think. literally ... He explains it as we all take the free way she takes sides streets and stops to smell the roses. she will get there it just will take a little extra time.

Well that is all for now sorry for all my spelling or punctuation mistakes I'm falling asleep lol told ya I wasn't perfect ... <3

Ugh

This photo to everyone is just a entry way but to me it's the path I walked for 9 months every week sometimes twice a week it's the path I walked thinking when I was pregnant how crazy it will be to walk this path with a baby seeing other moms with strollers I walked this path to my first high risk drs appointment and that is when the path no longer was welcoming I started walking this path once a week in fear every time I walked it telling my self I need to breathe I need to stay calm take care of yourself for harlow. This path I swear got longer and longer every time I walked it at the end of this path is where I broke down after harlow was born when they told me all the horrible news about her my legs still numb from the epidural, this path will forever haunt me it gives me chills just walking it having to go get harlow meds because her normal pharmacy is closed running this quick simple errand has so much more attached to it I hate everything about this hospital except her nurse that believed in her and her high risk dr who got me thru it other then that if I never saw this place again I would be grateful this place is my own personal hell...

trip down memory lane

Wednesday, April 26, 2017

Well this is the last night of normalcy my baby officially will have surgery tomorrow ... I look back on pictures of when it was just me and bobby and then when we got Zoe and I remember thinking we're never going to get pregnant and that wasn't fair how come we don't get to get a baby when so many people could care less and then The day came that I was pregnant and I thought to myself I cannot believe this is actually happening I cannot believe that I'm actually pregnant I remember running around the house and zoe chased me saying oh my god, oh my god, oh my god, oh my god, oh my God.. over and over and over again because I couldn't believe that it was actually real and I thought to myself my dream actually came true to be a mom that's all I've ever wanted was to be a mom to have someone to take care of to have someone to look up to me and confide in me and argue with me someone who is a mini me and mini  of my husband A carbon copy of me and him put together into one .. for years I never thought I would ever find someone I would actually Marry let alone have a kid with and then the two things that I never thought would happen happened I was the luckiest girl alive at that moment in time I even think back to the first couple weeks of being pregnant and thinking how the heck do you women do this I was so sick every inch of my body ached but I didn't care because it was worth it it was worth every single second every vomit every headache every ache and pain it was worth it and then 15 weeks came and we found out that we are having a little girl and I could imagine it her first boyfriend learning how to drive to the day she got married the day she told me that she was going to have a baby and that I got to be a grandma I saw it all flash before my eyes and it felt so warm and comforting and then 17 weeks came and I made an appointment to have our 20 week check up where they scanned everything and double checked everything to make sure everything was OK I remember walking into the doctors office Bobby had gotten off work early we went into the room where the ultrasound tech was I lay down and from that moment on I knew my life would never be the same I had never gotten that feeling before that moment there was something in the air it just didn't feel right it wasnt a happy moment anymore it was a moment of pure terror it was a moment that I never want to remember and I just hoped and prayed that it was my head playing tricks on me I had finally gotten all my dreams it was too easy after all this time and trying to get pregnant things were going far to smoothly the ultra sound tech began scanning everything I stared at her face waiting for her to break her poker face and she didn't the whole time she talked to me about when she gave birth to her kids never once batting an eye but still I could feel something wasn't right I remember Harlow running around my belly kicking me like crazy I kept telling myself how could a baby have something wrong with it be so active I just kept telling myself you're overreacting you're being dramatic everything is OK even ultrasound tech isn't thinking anything was wrong she would tell you even though she's not allowed to tell you I felt like she would have at least made a face she said she would be right back and she stepped out for a second I remember still having the jelly on my belly thinking is it over did we get to go home ? She came back in and that's when I knew something wasn't right her face I changed and she was far more quiet now I asked her questions about her kids and she gave me one word answers I stopped asking I just laid there I could feel my heart pounding in my chest thinking to myself something isn't right I looked over at Bobby he was sitting on his phone as usual he looked fine so It had to been just me something in the air it was just me I kept telling myself over and over again everything is fine she's fine you're doing everything right she told us that we could go and no news is good news so if we don't hear from them in three days just continue on there's something about how she said it I just knew then the days past we got through day one then day to then day three just when I thought I was in the clear my phone rang and it was the phone call from actual hell telling me something was wrong but they found something on the scan but they couldn't tell me much more and that they have an opening in five days to come in and get rescanned five days I had to wait to find out what was going on five days I spent bawling my eyes out five days thinking about all the things that I had hoped and prayed for and wondering which of them I was going to be able to do if any at all it just so happened that my birthday was the day before our appointment I'll never forget that birthday because it was the worst birthday I've ever had just dreading the next day it was the slowest birthday I have ever had as well I spent it with my two best friends I remember I was so angry at Bobby because I had thought that he didn't plan anything for my birthday but he had actually surprised me with a surprise dinner if you know my husband you know that that is extremely rare surprises he hates them I remember going home that night laying in bed thinking to myself what am I going to do tomorrow when they tell me the worst possible thing how am i going to handle it I've had anxiety and depression my whole life so in this moment I have to get it together not for me not for Bobby But for Harlow I woke up the next morning if you can even say that I woke up because I don't think I even went to sleep I got dressed I remember exactly what I was wearing that day black pants and a burnt orange top I remember putting my shirt on and holding my belly thinking I got you no matter what I've got you we are arrived at the hospital where they take us into a special room and I remember the lady she was a geneticist she tried explaining to Us what was going on but I didn't hear a word she was saying I remember asking her if she could repeat herself because I was so confused as to what she was saying she did politely I remember the words there is an issue with your daughters brain I shook my head thinking to myself of course the one thing that you can't fix the one thing that you can't understand and The one thing that runs your entire body I felt cold I remember that which was odd because when you're pregnant you're really hot all the time at least for me I was I think it was my blood I think it was ice cold. Everything that I ever dreamed came crashing down on top of me no prom no first boyfriend no learning how to drive a car no getting married no grandkids none of it how is it the one thing that I wanted in my entire life was sitting right in front of me but there wasn't a damn thing I can do to fix it we sat in her office for about an hour talking about all the different options talking about all the different things that could happen talking about what kind of quality of life she would have talking about all the different issues that she will encounter that she'll probably never be able to walk talk eat on her own and so on she asked us three different separate times if we want to abort me and Bobby said no before she could even get the words out finally it was time to see the doctor we got into the room and I knew right then and there that they didn't need to rescan us they Already knew what was going on they wanted to do an amniocentesis to try and narrow down what exactly was going on originally she was only supposed to have hydrocephalus God what I wouldn't give for just some Hydro but at the time it was very scary and that's not saying that hydrocephalus is not a serious condition because it is it was time to do the amnio they brought out the biggest need I think I've ever seen in my entire life I remember them saying that because I had tattoos I'll be just fine not exactly tattoos don't have 12 inch needles that go through your belly into your baby sack to fill tubes of her fluid. I turned to my left I grabbed Bobby's hands for dear life I closed my eyes and I prayed for the first time in a while I prayed it wasn't to make the pain stop it wasn't to make this nightmare end it was to make my baby Ok to take care of her almost done almost done almost done I heard that for about what seemed like 10 minutes it was realistically about four minutes but four minutes too long finally they were done I was covered in iodine they said that I could get cleaned up they all left the room I looked at Bobby and I lost it I don't think I've ever cried that hard before I had been holding it all in for so long been told something is wrong with my baby having to wait five days going through the appointment being told that she's basically going to be a vegetable getting this huge needle stuck in me I cried into Bobbys chest till the nurse came in and said that they needed the room I hopped off the bed grab my stuff and ran out the door they stopped me telling me that they needed blood at that point I couldn't walk anymore I couldn't move anymore you guys can have whatever you want I remember thinking they brought me a wheelchair and Bobby wheeled me downstairs to get blood work done then we went outside so that I can relax and breathe I remember thinking this day is such a horrible day and now we have to wait for test results that would probably take about three weeks three weeks I will be 24 weeks when I find out what's wrong with our baby not that it was an option but just in case you guys wanted to know 24 weeks is the cut off for abortion it wouldn't be just a simple procedure but it would still be considered an abortion that means that if I were to consider it I would have no time at all to make a decision The test results all came back negative so this meant that there was a large possibility that the hydrocephalus could clear up on its own that there was no infection no cyst no tumor so Harlow had a fighting chance of being OK there was a light at the end of the tunnel but the damage is already done my pregnancy was destroyed my anxiety was a dark cloud that followed me everywhere I went I couldn't leave the house I couldn't talk to anybody I was all alone.. what happened to my dream and why did it get so bad so quick I had to do was take care of this little girl and I can't even manage that it got real dark for me so 25 weeks came and went than 30 at that point I was going in probably three times a week to the doctors to get monitored the fluid hadn't Grown this was huge this meant that there was a large possibility that the fluid could drain on it's own after she was born I actually saw the light at the end of the tunnel for a change I can't wait to meet her after hearing the news that I may still have a chance at a normal baby 40 weeks came and went she did not want to come out after the fifth day I had a check up with my doctor and they wanted to induce me because her fluid was low I remember I was so scared to give birth I was beyond petrified there was nothing anyone can say to me that was going to make me feel better I don't know if I was scared of the actual birth or what came after either way I had 56 long hours to think about it I didn't get the epidural until my 50th hour I wanted to know what it felt like because I had a feeling that I never was going to be able to feel it again I had a feeling that this was going to be my only birth, my only pregnancy I had already been robbed of all the joy the least I could do is remember this it was finally time to push it was finally time to meet our little girl, I was finally time to know the truth I pushed three times and she was out I remember looking at her thinking gosh why do people think babies are adorable when they come out don't get me wrong she's my daughter and I think she's beautiful but not covered in blood slime and God only knows what else I remember telling the nurses that I wanted her after they cleaned her up that it really didn't matter because the second she came out that's when everything went downhill and fast she wasn't breathing she didn't breath for 46 seconds do you know how long 46 seconds you would think quick right?  Nope it felt like a damn lifetime once they finally got her to breathe I felt like I could breathe they said they had to rush her to the Nicu I asked if I could at least see her before they took her they brought her over next to my bed and I remember seeing her blowing bubbles that was what I got out of that moment was her chubby little face blowing bubbles and then they took her and that was it. I wasn't allowed to go see her until the epidural wore off so I could pee well that wasn't happening very quickly so they gave me the option that I could get on some weird contraption things pee and they could wheel me in there on a wheelchair I agreed of course. Bobby wheeled me down to the Nicu we went through the doors where we got stopped by a doctor his face is forever burned into my memory and it's one that I don't want... He took us in to the office and proceeded to tell us all the things that were wrong with her how she's having seizures how she has some extremely rare genetic disorder how she will never learn to do anything she will have no quality-of-life "she will stop mentally developing at 3 months and die at 10 years I'm sorry" I remember he then handed Bobby a piece of paper that he printed off the Internet explaining in detail what she had and I just remember staring at him thinking you're such a son of a bitch what possessed you to take this moment for me why did you do this to me you  couldn't have waited until I at least got to see my daughter for basically the first time to drop this giant shit bomb on top of me no you had to stop me at the door you had to tell me everything and now I'm supposed to be sent on my merry little way yeah I didn't say a single word Bobby wheeled me out of there take me to go see our daughter who is in a glass box and she looked so peaceful still blowing bubbles I asked if I could hold her and they said that I had to wait a little bit because she had seizures I asked Bobby if he would take me out of the Nicu  for a moment he did I told him to get me the fuck out of the hospital The epidural hadn't even worn off yet he took me outside where he sat with me while I cried my eyes out my little girl, my dream, was sick and there wasn't a damn thing I can do about it... To be continued....
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