To smooth for to long...

Monday, November 28, 2016

So I was just thinking earlier today I haven't had anything to blog about and update everyone on Harlow has been acting like a normal new born.. soooo looks like I jinxed my self ..

The passed week or so Harlow has been doing this weird straining twitching thing ether while she is eating or right after she eats she looks like she's in excruciating pain and stretches her self out so she cant bend and we cant bend her legs or arms she throws her head back and just crys and crys well we have been hoping it wasn't anything and would just pass and it wouldn't happen every time so we knew she wasn't allergic to the formula.

Well today she started doing it half way thru her bottle and would not calm down for 20 mins it was the worst I've ever seen it and the twiching was at its all time high so I wasn't sure if made she was having a seizure and it was hurting her and this whole time maybe she's been having them?? anyways we had enough we decided to take her to the emergency room. we got her to calm down to be able to put her in her car seat and because we bought some time we went to Anaheim kaiser because we al know how we feel about riverside..

We got there and they took really good care of us got us in right away and really listened to us and our concerns they had a pends dr come down and sit and talk with us. He doesn't think that it is seizures so he thinks she may be taking in to much air when she eats and its not coming up when she burps so theres a lot of air and pressure in her belly and she's in pain from it...

So if that is the case she needs Therpy for her to eat which I'm ok with as long as she can continue to not have a Gtube. If it were up to riverside they would have put one in her already thank god for our amazing nurse there Joanne ... But anyways we now gotta just push thru until we can get in with the therapist besides her other therapies. Also they gave us some information on how to spot a seizure which is nice because it makes us able to rule out if we think she's having one but say she's still eating its not possible for her to eat and have one and so on so that made me feel a little better.

Were still waiting for our 24 hour EEG but the dr in the emergency room agrees that we need to get on done asap so ill call for the 4th time tomorrow wish me luck...

As for me and bobby were hanging in there. Bobby has to go back to work which is really hard on me because he really helps me esp when im having annoying postpartum moments where I cant be around her so I'm gunna have to suck it up! Also I've been doing days and Bobbys been doing nights (feeding) so its gunna be a adjustment lol I always get up with him at night and I change her but he does the feedings which is nice cus she eats really good and fast with him because she learned with him with me she takes her sweet time!

Other then all that I'm currently working on getting a online shop together of baby's stuff like baby moccasins, pacifier clips, car seat covers, nursing covers, headbands, burp cloths, hope for Harlow shirts etc all the money that is made from the shop will go straight to Harlow's medical and therapy bills so once its open spread the word it would help so much! And will keep me busy which is what I need right now.

Welp I think thats all for now thanks for your continued prayer, love and support it means so much to us <3

Harlow update

Sunday, November 20, 2016

Thank goodness we have had a break from the Drs appointments they were draining...

She has a couple coming up and right now its just the waiting period for her mainly to see how she is progressing pretty much as of now she's a normal new born weight, feeding, sleeping ect. Her eye sight is the only thing they actually have proof of that isn't like a regular new born. Were still waiting on the appointment for her 24 EEG to see if she is having seizures and her hearing isn't until dec 5th. She hasn't been doing that twitching thing as much lately so its been a relief but were still on edge about it. We try our best to let things be and when she does things just take a deep breath and hope that its normal baby stuff it would have been easier if she wasn't our first kid so we knew what was ok and what isn't lol. She however today put her hand on her bottle grabbed It and pushed it away when she was done I was like I'm pretty sure ur only 4 weeks old kid...

We got a call from the institute in Pennsylvania saying we can take the week long course in April to help her stimulate better and help us learn about her possible disabilities and how to help her have a better quality of life. It is pricy tho so at least we will have time to save hopefully.

Enzo (her fur brother) has been so good with her it is crazy how much dogs can sense he won't jump on our bed if he knows she's in the room he's scared to disrupt her or jump on her but we pick him up and he goes and licks her head then lays right next to her all night long when she wakes up he wakes up its really cute.

We did family photos yesterday and I cant wait to see them along with her new born photos safe to say this kid will have 5 baby photo books just in her first year.

As for me and bobby were adjusting to our new normal its calmed down a lot and it helps that she isn't acting out of the normal she sleeps thru the night most nights if not then she will get up maybe once at like 3 to eat but then go back to sleep right after she still doesn't cry she whimpers and whines again not complaining! She thank god isn't backed up anymore thank youuuuuu prune juice! But it is hard to figure out what she wants because she doesn't have a cry for different things so its again a learning experience and most things are timed if its 3 hours its she's hungry if its random its a diaper if its someone holding her on their shoulder its because she hates to be held that way... So yes she royally hates tummy time... sorry littles its mandatory.

My postpartum has turned a corner it comes and goes when it pleases some days are great others I'm on edge others I'm crying for no apparent reason. I know its getting better but I'm so scared somethings going to happen with her and throw me all the way back to the beginning so I just keep praying that I'm able to continue to get better and not go back wards because I neverrrrr want to have that feeling of paranoia and fear again in my life id give birth 20 times over feeling like that again.

Latly I've felt very blessed and not like in that way people post because of a material object (no offense I'm guilty of it in the past) but my life is by no means perfect we live at my moms ( not complaining) but we were in the process of saving to buy a house before all this happened and we were getting pretty close to being ready but now with everything thats going on with Harlow theres no way we can afford it right now which at first I was really upset about because were married with a baby and we should be able to have our own home but life happens and its not that we mind living with my mom heck we got a builtin nanny, we make a great team between the 3 of us its been nice having her help and I don't have to freak about her living alone since my dad passed but still everyone wants to buy their first home just one more thing we have had to readjust and put it in the one day pile. The other reason I've been feeling very blessed is my family on both my side and Bobbys its brought us closer and it makes me feel so loved and harlow has such a amazing support system behind her I love how no one looks at her as a "disabled" baby they just look at her with nothing but love. The friends I have in my life I couldn't be more grateful for they have been checking in on us and always being shoulders to lean on when I need and that means the most its true what they say you see your true friends when you get married and when you have a baby I've done both now and have filtered thru all the ones who don't care about us and the ones who do and I can honestly say I feel very lucky. I feel I also have a new relationship with god which anyone who knows me knows I've always had one just never been very proactive about it and had my ups and downs I've had a lot of people die in my life and I'm only 28 years old I've been thru hell and back with some things in life battled a lot of demons but I finally feel I'm in a good place with me and the man upstairs I finally had to give up on trusting Drs and had to trust that god has a bigger plan and give it to him.
Lastly I've had to readjust my perspective on life and what matters and what doesn't this doesn't mean I don't care about the things I used to but it means I have to see whats important and whats not " don't sweat the small stuff" as my mom would say, I try to remain as positive as possible and everyone says how im strong and all that and I appreciate it more then you all will know but I don't feel it I feel like I'm barely hanging on but its nice to know others just give me more credit then I give my self. Working on my new normal and adjusting to our new life as parents hasn't been easy in our situation but Harlow is the most amazing little girl and I couldn't imagine my life with out her now.

So thats all for now

Night guys!

Day by Day...

Wednesday, November 16, 2016

Today was her appointment with the pediatrician and WE LOVED HER! Seriously having a good team behind us is what we need more then anything I have been praying for good Drs in her life since the ones in the beginning weren't so great. Feel like everyone is finally on harlows side no ones looking at her like she's just a number or a pay check . Were still waiting to hear from the inland regional center which is HUGE for us its all the therapy mental and physical kaiser offers a little bit but nothing compared to IRC so I called 2 days ago to see whats going on and they submitted her paperwork so hopefully they will be getting to us soon because the sooner the better she may be a newborn but her brain is absorbing everything right now so we want to get started asap!

Its frustrating being her advocates at times because theres only so much you can actually push I cant sleep outside the doors waiting for them to answer us. If god has taught us anything in all of this it is patience which is something that A. I don't have and B. never have had and C. don't think ill ever be able to learn the amount I actually need granted when I was 16 vs now its a hell of a lot better but waiting is not my strong suit...

So back to her appointment, She is 7 pounds 14 oz ( she was 7 pounds 9 oz when she was born) as most people know baby's loose some weight after they are born the Nicu swore she couldn't keep her weight cus she got down to 7 pounds 4 oz... I'm rolling my eyes just thinking about how they tried to blame it on her feeding out of a bottle gosh they really did not want her to learn how to eat. But Today she said she's "perfect" now of course everyone wants to hear that about their kid but it means sooooo much to me when I hear that she's progressing as a normal new born I'm scared for the day she slows down and starts to fall behind but I'm remaining optimistic and praying that that doesn't ever happen.

Lastly she had us change her formula and out her on some prune juice and gave her a suppository still no poop tho lol I think I cleared her out yesterday when I gave her one. Ohhhh gotta love wishing for poop... Lastly she said she's eating so well we don't have to wake her up in the middle of the night to feed her YAY HARLOW me and your dad don't mind it but hell who wants to wake up in the middle of the night? Ive been running off coffee an more coffee so its nice to drop it down from a venti to a grande lol.

Did anyone have back pain after labor like 3 weeks later I've been having horrible back pains I dunno if its left overs from the epidural or if its the stress it being to tense.

Well thats all for tonight <3

Finally a solid good day!

Tuesday, November 15, 2016

Today was good from the moment we woke up to right now. Thank god cus I needed it I feel like its always up and down so it was nice to have a good day for a change. So Harlow finally got her new born photos done with her aunt with out any tubes or wires or Nicu beds.... Save to say I LOVE LOVE LOVE THEM!

It is so crazy how much she has changed in just 3 weeks everyone keeps saying "they grow before you know it!" to me I'm slightly ok with that I will miss her being so little and new born but when your future is so unknown its kinda like you wanna get a little further so you can be proactive with her therapy to continue to prove the Drs wrong BUT at the same time I am taking in all the moments and her being so little...

So Monday was SUPPOSED to be our 24 hour EEG to find out if she is having seizures we were on our way to LA and we get a call saying they need to cancel it and they will call us back to reschedule ughhhhh sooooo annoying!! but oh well what can you do.. So today we had a appointment with a occupational therapist that went over everything with us on whats going to happen the next couple months and all the different things we can do to help her progress better... safe to say I love her ( yes Harlow of course but the therapist ) she was sooooo optimistic and told us she's been doing it for over 20 years she sees musicals all the time so to not give up on her don't loose hope or faith and lastly to pray I love it when they give us this type of advise instead of telling me she's going to die. So she did her therapy session and evaluated her and told us she passed with flying colors and if she didn't know anything was wrong with her she would think she was a normal ADVANCED baby becuase of her picking her head up on her own rolling over and so on she's kicking butt! Also she doesn't think she's deaf and isn't convinced she won't be able to see even tho she isn't that type of dr she sees disabled babys all the time so it was such amazing news to finally get after hearing always negative stuff so even if tomorrows not so good its the small victories we have to take and let them make us happy for the time being.

So last but not least she finally got her first real bath and ugh sheeeeee is adorable I cant handle it!!
All the bad things we deal with and its just the beginning its nice to relax with a newborn baby and feel sorta normal for a change.

Pends Drs appointment tomorrow fingers crossed it goes good!

Night guys

Another bump in the road...

Monday, November 14, 2016

So today we were supposed to go to LA for her 24 hour EEG... We were on our way when we got a call saying that they needed to cancel it because the tech that does all the wiring isn't in and they will have to call and reschedule...Its super frustrating because Harlow has been doing some things lately that arnt seizures but they are kinda making us un easy and we really wanted to talk to them about it to reassure us. So now another waiting game as usual.

Its really hard living in the unknown I think thats the hardest part of all of this not being able to be prepared or make a plan or have a idea of what we are going to be dealing with the rest of our lives. There is so many different things that come with her diagnosis and other babys/ kids who have what Harlow has have such a wide range of conditions so its not like you can even go off of them you just know somethings not right... its very very hard...

So on to other news Harlow has been fussy for a little over a week now cus of her digestive system and being backed up. Its really hard to see her this way and theres not a lot I can do I have tried all the over the counter safe stuff but its just gunna be once we see the pediatric Dr. and what she says. Thankfully its on Wednesday so only one more day of this. I know all babys go thru this but its hard when she gets super worked up because she starts twitching and I get worried she's going to have a self induced seizure or something. Having a kid with unknown problems is worse then knowing what problems your facing I swear!

On to good news, Her eyes are becoming more in sync with one another which the dr said means they are getting stronger so keep the prayers going who knows maybe her nerve is growing an so is her vision. Her hearing appointment isn't till December 5th but I know she's not deaf she gets spooked at to many noises for it to be vibrations in the air lol.

She's been grabbing a lot more found her face and put her hand in her mouth she can lift her head and when we stand her up she tries to stand on her own so much for being 3 week old kid...shes able to keep her binki in all by her self now tummy time is her least favorite hobby because she's like me and doesn't like to be confined she won't let us put her on our shoulder to burp her ether so I skrued my self on that one by giving her those genetics. Lastly she's so much more alert and we have been able to up her feeding a ounce and she is still hungry every 3 hours which I'm ok with just the fact that she knows how to eat out of a bottle is a big deal for us so bring it on sister!

As for me and bobby it was his birthday this passed weekend so we were able to go to dinner for it on Saturday and leave her with my mom it was hard but we both knew we needed to get out. Welcome to the parent life... but I'm ok with it even with my postpartum and not wanting to be around her all the time there is no where I would rather be, Its a big angel and devil on each shoulder for me. It usually doesn't kick in till about 3 pm so I soak up the mornings. Surprisingly she's been sleeping thru the nights we have to wake her to feed her (knock on wood).

Well I think thats all for now check out the cute pictures of my kid <3

Postpartum + New Mama Don't Mix Well....

Friday, November 11, 2016

Why on earth do hormones exist ?? I mean I know the basics but this is a bit over the top... Some days I feel perfectly fine, Im able to be a mom and have no problems. Other days however they get rough... Public service announcement before I get in to this I DO NOT have any thoughts of hurting my daughter or my self. With that being said, When I used to hear about how women would kill their babies in a bath tub and what not I would think how in the world could you do that how could you possibly be in that mind set to allow your self to do that? Now having postpartum I don't understand it still but I do see where you can go down the rabbit hole to get that bad thats why I made sure right away when I wasn't feeling right I took action. Tho I don't have that particular version of it but I do have the version of not wanting to be around her at times which is really heart breaking because part of me is like this is my daughter I love her so much but then the other part of me has to leave the room I cant even be around her and I don't understand it. Why on earth is this possible? I fought so hard for her I went thru hell with her and now were fighting to give her the best life we can so then why do I feel this way some times? like I said .. hormones.. I wonder how they felt with these in the old days like seriously with out medicine or any idea what was going on those poor women.
How we feel about hormones -_-

Today was a rough day it was my dads 2 year anniversary off his passing and I finally when to see his grave I had been waiting for the right time to go I think I've just been putting it off because I haven't felt with him dieting fully yet and seeing his name on a grave was just not something I was ready to see but I decided to take harlow and she could be my little moral support and that way she could meet her grandpa.

So we went and I was sitting at my dads grave site with my daughter and there was a guy a couple rows back playing the harmonica sitting at a grave. Tho as creepy as it sounds it was kind of nice. He was playing old military hyms while the planes flew across leaving and coming to the base.It brought me back to the times I would go with my dad out to the base and how I thought it was so weird why everyone thought he was so special.. I mean he's just my dad. Turns out the older I got the more I realized how high ranking my parents were. Now being a adult I take a lot of pride in what my parents have accomplished hope once day Harlow will feel the same about me and bobby. So I sat there wondering how in the hell did I get here? How did my life take such a crazy turn? My dads gone my daughter has all these supposed problems and is a 1 in 11 million case, My uncle dies on my mom and cousins birthday the day after my daughter was born, postpartum bullshit... like at what point do I get to throw my hands up in the t shape and say time effing out. Because I'm getting to that point where I need a break. You can only be strong for so long before you explode. I feel like me and bobby are getting to that point, But as everyone knows you cant just stop life..

As for harlows well being she's been doing this spasm sorta thing it lasts a couple minuets at first we thought she was having a seizure but then checked her vitals and all the signs on a seizure and nothing so I dunno what it is .. Anyones babys ever do this before? its almost like a twitch every couple seconds not painful looking if anything its like her body has the hiccups lol I think were just on super high alert or maybe she's having seizures and were looking for the wrong thing...

We found a place in Philadelphia that works with parents on how to help stimulate their kids who have brain problems I emailed them and hoping to hear back soon the quicker we get started on helping her stimulate her brain the better her outcome.

So prayer request for this post are

-We hear back from the place in Philadelphia with a "come on down we would love to have you"
-That she in fact isn't having seizures and its just her being a baby
-That her eeg Monday shows no signs of seizures

Goodnight World <3

Up and Down.. Up and Down....

Wednesday, November 9, 2016

Monday was such a rollercoaster of emotions. meeting with the neurologist is so nerve wracking and I didn't even go in to the meeting. Thank goodness for bobby and my mom and Bobbys mom because between the 3 of them they were able to get all the answers we could ask for with in reason. The diagnosis that Harlow has is 1 and 11 million its so rare so there isn't very much to go off of. Everyone who finds out that their baby has this aborts their baby so thats why its so rare. So she told us that its up to Harlow, Harlow is going to be the one who is going to tell us what she can and can't do all we can do is help her along the way. Therpy Therpy n more Therpy which is fine by me I hope that she's able to take all the tools we give her and prove to us all she's just like her mom and dad tell us we can't do something n we will prove you wrong but she's got both of us in her so she's got it 2 times as bad to show people whats up!

She's such a fighter already, the last 2 days she's been more like a baby then I could have ever asked for not drugged up not disabled just a new born baby although she doesn't cry but she does do a silent pained look which I kinda feel like I would prefer the crying because its hard to know what she wants or needs.  I just try to absorb all the baby stuff she does because I don't want to look back like I do my pregnancy and have it robbed from me. My pregnancy was so horrible because it was so high risk and always bad news and all the stress test and all the needles and blood draws. It was almost IMPOSSIBLE to be able to embrace it and be happy. Don't get me wrong it is all worth it regardless what we are going thru because I look at her face and just love every inch of it and know we made that from scratch and she is made from nothing but love.

Today however was really hard because it was her eye Dr and tho they had told us she was blind at the Nicu she also was 4 days old. So today we found out that her optic nerve isn't fully developed its the part of the eyes that connect the eye to the brain to make the connection of what you are seeing so even tho her eyes are developed it doesn't mean much if theres no connection so they said she can see shapes and shadows and at most the big E on a eye exam but unfortunately glasses won't help and there is nor surgery she can have. They said they have seen it happen where one or both eyes just develop so there isn't no hope but he said its very rare. Harlow is very rare so I am hoping and praying that this will work in her favor and magically develop I have faith in her to prove us all wrong yes but at the same time this is her body were talking about if it doesn't develop it doesn't develop its nothing we can make happen its all up to her body. So yea it was a rough morning BUT we did find out her " eye twitching" that the Drs sworeeeee was her having a seizure is actually infact her newest eye diagnosis not seizures we will have it confirmed on Monday when she goes in for her 24 hour EEG This doesn't mean she will never have seizures seeing her diagnosis with her brain says she's prone to having them but this does mean that she hasn't actually been having them so the meds they put her on that made her higher then the heavens was not needed so we were right! Its nice to know we were fighting for something that we had a gut feeling about and it came out that we were right. We got that parent intuition I guess lol. So there was a plus to todays visit. Now we have to get her enrolled in a place in Santa Ana that works with blind kiddos to help them learn right away so that she doesn't have trouble when she is 5 trying to figure it all out so she will just have to learn different from day one.

Im learning that Harlow is just going to have to learn different which is fine by me but its so hard because as a parent you just want to give your kids the world. All of this has been so hard to take in its one hell of a pill to swallow .. some days are fine others are hard I feel this is my new normal...

Happy Sunday

Sunday, November 6, 2016

Today was a good day we went to church this morning to see our nephew get dedicated to the church and then after were lucky enough to have the pastor and a bunch of people pray over Harlow. It is AMAZING to see how many lives Harlow has already touched in such a short amount of time. She's already making her mark on this world.

Todays message was straight up made for me its crazy how god can do that. It was about anxiety my BIGGEST issue. Something I've been dealing with my entire life it just got worse when all this happened. It brought me back to when we went in for our 20 week scan before we knew anything was wrong with Harlow. I remember thinking in my head when they were so carefree about it "no news is good news" they told us if there was anything that they saw they would contact us with in 3 days. If we didn't hear from them we were in the clear. Well if anyone knows me or bobby we've been known to pull the short stick on pretty much anything in life everything for us always came with something we have had to fight thru to get it. I hoped and prayed that Harlow wouldn't  get that as well. As we all know by now... We got "that" phone call. Up until that point tho I hadn't had a ounce of anxiety it was a very calm beginning of pregnancy except the flu that I got the day after I found out i was prego but that wasn't a surprise ether lol. Once I got that phone call tho the tone was set for the rest of the pregnancy. What was worse is they couldn't get us in to see the Drs and specialist until a week later so for a week I was a mess trying to get thru the days wishing I could fast forward them.  Once we actually got in to see the Drs. they had told us everything no parent let alone first time parent let alone pregnant parent wants to hear they talked to us about how she could come out paralyzed if she even made it thru the pregnancy and that she would need help the rest of her life and so on. Problem with all that now is they weren't even right about her diagnosis. So what if I had given in to them and aborted her all 7 times they asked us? I understand in special circumstances abortion is what may need to be done and I'm 100% for woman choice but this wasn't a choice we had been trying to get pregnant for 3 and a half years so magically we get pregnant and now I'm supposed to say " naw she's not perfect lets start over" yea no thanks ill take her just the way she is. Whats worse is how easy it was for people to ask if we wanted to do it like it was giving blood.  Thats when my anxiety really settled in to its old stomping grounds between realizing that it was a uphill battle from this point further for the rest of our lives and all the test they had to run to find out what exactly is going on. Again they only had part of the puzzle solved ohhhh what I would give for it to just be a little fluid on the brain now.

I feel like life's constantly throwing stuff at me and bobby trying to get us to fall down and give up and there has been countless times each of us has wanted to give up when the other is still fighting. I lost all faith in god when my dad died I didn't understand how life was made the way it was and how someone could willingly set it up so people had to feel that pain not to mention my best friends mom had died from cancer 2 months prior to my dad. What kind of sick joke was that? What kind of higher power would set it up to work that way? But now,  not that I'm ok with my dads passing hell I haven't even began to handle that I've put that in a box in the back of my head and buried it deeeeeep down. I should probably take a look at it sometime soon I'm sure that isn't healthy. But what I'm getting at is there is so much good that has happened to us its hard when you just focus on the bad things when I have this amazing little human now. Heck she may have problems but then again who doesn't? Don't applaud my strength tho as much as I'm grateful to hear people supporting me and bobby and how strong we have been I have more bad days then good I have less clarity then being able to understand the full extent of what is going on. I was able to regain faith thru my daughter. When we die I don't believe were just bodies in the ground and I don't believe thats it for us so regardless what you believe in I chose to believe that my dad is in heaven right now going off roading on the clouds drinking a beer looking down at us saying you got this. That to me is a hell of a lot better of a thought If you ask me.

Tomorrow is the day... The day we meet the LA neurologist and holy crap am I nervous. That word doesn't even hit the full extent of how I feel and I'm not even going to be In the meeting. Bobby my mom and his mom will be meeting with the Dr. Ill be in the hall way pacing back and forth wishing I was anywhere else at the time. Its not fair that I can't handle the Dr. portion of all this right now esp cus thats not fair to bobby to have to take it all on. Tho he's amazing and understands and is able to be strong for the both of us. How did I get so lucky? He's still going to have to tell me what the dr says and tho I may not like it bobby has better bed side manner and is able to tell me things so I don't have a full blown mental break down. But it can't be easy for a husband to have to be that delicate to his wife as well as holding it together for his daughter. Lord please give him the strength tomorrow not me. Although bobby thrives under pressure he may not see it but he's just like his daughter tell him he can't do something and he's gunna prove u wrong ten times over just to make his point. I told him the other day I think I got given him for a reason and he got given Harlow for a reason he has changed like no one would believe he's a whole different person from who he used to be. As for me he's given me a back bone he's made me stronger in ways I never thought I could and he's also shown me how to not care so much and stop overthinking things that arnt in my control don't get me wrong I still over think but no where near how bad I was.

Im Two Whole weeks old guys!

Her fur brother loves her 

Well thats all for now Harlows waking up gotta go!

First Night Home..

Saturday, November 5, 2016

Night one... Nailed it!

Im not sure if its because Harlows not big on crying or we just have way more patience then we thought but the first night home wasn't bad at all I'm hoping that if anything it just becomes a auto pilot sort of deal. What also helped us was my mother in law and grandma in law got us the owlet its the little sock that goes on your babies foot to monitor the heat rate and oxygen it did go off a couple times thinking that Harlow had left the room which we all know did not happen so I'm guessing it couldn't pick it up whatever way she was moving but other then that its the best peace of mind everrrrrr!  

The hospital was having us feed her every 3 hours on the dot half the reason she was having such a hard time eating was because she wasn't hungry the other half was because they had her so doped up who wants to eat when your sleeping? So we've pushed it to every 4 hours and bumped her amount up a little and she seems to be doing just fine. Ive been having such a hard time with the Drs because growing up I had one dr my whole family went to see he was caring and thoughtful and I never doubted him. Bobby how ever has had more broken bones then your average 29 year old so he's been thru the ring around from being told he would never walk again to them just prescribing him norcos instead of actually fixing the problem. He's a lot better at being able to see how the odds are tipped and see that Drs have to give all the information to prevent being sued. That however doesn't mean you have to horrible bed side manner to be a Dr. Wheres Derek Sheppard when you need him. (Grey's anatomy for those of you who don't watch the best show ever) Anyways what I'm getting at is it is incredibly hard to look at my daughter and see anything wrong with her when she acts like a normal baby and looks like a normal baby. I mean I feel like god is blessing us to be able to have the experience of a newborn but at the same time its like a tease because we are just wondering "what next" when really we should be appreciating the moments we have right now but no matter how much you tell your self focus on the here and now day to day its almost impossible to not look in to the future... I catch my self around 3 o'clock getting pretty down not because I mean to thats just the time of day things take a turn for me so I try to appreciate the mornings its irnoic tho because I used to be such a night person.  Did anyone else have this issue with their postpartum? or am I just weird? lol the social worker and head nurse were so surprised when I was willing to admit I had a problem I'm guessing women arnt as comfortable telling people. Me on the other hand I've felt with depression when my dad passed away I know how dark it can get and by saying it out loud it makes it real which then makes its easier to admit and get a grip on it. Little food for thought to anyone going thru it and scared to admit it because it seems like its a topic that is not talked about very much and so I can't imagine going thru it all alone. So with that all being said we made it thru our first night alone with a "sick" baby haven't killed each other yet and she's still happy as can be that to me is a win.

Just the beginning...

Friday, November 4, 2016

    Well today marks day one of a new chapter in our lives. Harlow finally got to come home today out of baby prison and out of the hospital... Can I get a AMEN?? The Nicu chapter in our lives was definitely one I could live with out. This morning before we got discharged the Dr. came in now keep in mind this was the Dr. that told us the day after I gave birth that she was going to stop developing mentally at 3 months and die at 10 years old, He also told us that she would never eat on her own and have to be on medication the rest of her life to control her seizures also that she is blind and deaf.  So pretty much besides the fact that we knew we were in for a battle he shoved us in the deep end with cement blocks connected to our feet. So he came in and talked with us about how the discharge goes and at the end of it he goes " She isn't as bad off as we thought she was" awe thanks for that... Ie yiyi it is safe to say being out of that place has made all the difference in the world. I wasn't able to love my baby the way I wanted to it was only in 30 minute intervals with her hooked up to tubes and wires. Don't get me wrong I do appreciate all that they did for her like I've said before we had some really amazing nurses. Ladies if I can give any one advise who is going thru what we have or is a new nurse the reason we like the older nurses is because they've been thru it they have seen it and they know what rules are meant to bend and what is important to patients and parents so take my advise and learn from a nurse who has some years under their belt they are wise.

   So now were home and its very calm (knock on wood) she doesn't cry.. and when I say doesn't I mean does not cry I've never heard her cry. When she was born she wasn't breathing so they had to work on her right away and take her off to the Nicu by the time we saw her she was all drugged up so I dunno if she just never learned how to or is just one of those babys so no crying. Pretty much its eat, sleep, poop and pee repeat which we knew was going to happen but I thought it would be a bit more hectic. Although since she's at risk for seizures her " baby twitches" SCARE THE CRAP OUT OF ME!  I know if she's gunna have a seizure its not like I'm going to get this nice warning and like I'm able to prevent it but its still uneasy to see I know Ill get used to it its just getting there thats the hard part! 
   We got a appointment Monday in LA with a neurologist .. Weird could have sworn I requested that from day one... Anyways I'm so nervous I'm still having a really really hard time with the medical portion of all of this its very hard to hear much of anything from them for me I start to panic before they even start so for now thats where bobby comes in and he is able to take what they say with a grain of salt. I hear all these amazing stories about babys who show their own miracles and pave their own paths and show Drs they were wrong. I pray that Harlow will get a chance to do that as well there is a lot of bad in the world but there is so much beauty I just don't want her to miss out on it. Besides that appointment she has 6 others coming up for 3 different Therapys, Hearing, Vision, and good ol pediatric where I get to then argue about vaccines lol When I saw those two pink lines when I peed on that stick I had no idea what my life was going to be like safe to say its been turned upside down since day one. I have my ups and my downs dealing with postpartum and dealing with all the horrible things that Harlow may have but today was a up day and ill take it...



Thursday, November 3, 2016

          HARLOW'S STORY

Hello, my name is Hawlow Jean. My daddy + mommy call me their little unicorn because I am a living miracle. I was diagnosed with Lissencephaly at birth. I have a rare genetic brain malformation condition where my brain is smooth and doesn't have folds or grooves like most people. 

I have had a very rough start, but I am a happy little girl with a lot of fight in me. Every day I am beating the odds and showing my mommy + daddy how strong I am. I won't give up and I know with all your support I will keep pushing forward. 

"If you don't believe in miracles, perhaps you've forgotten you are one"
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