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a compass was there to get you thinking

I am trying to upload this new thing on my blog....I need to post the sentence above for verification.  

The Blog...

 Hello everyone.  I just wanted to let you know that I am making some changes to my blog.  I would like to thank everyone who has decided to follow my blog and give me inspiration.  Even though you guys do not always give me ideas to write about, but you guys made me realize that I probably would have stopped writing on this thing weeks ago because I never thought that people would actually want to read what I had to say.  It surprises me, but keeps me going.  Like I posted yesterday I will be changing the name of this blog and most of it contents.  I will still talk about Maggie, and share our story with you all, but I feel like I am being misguiding because I am not just talking about Gastroschisis, I am talking about my life, my problems, my wants and wishes, and my fears.  I am opening my mind to everyone.  

I have some homework for you all.  I was thinking about renaming my blog Life, Love, and Beauty.  I want your opinions on this decision.  Also, I have taken notice that the blog has 7 followers now, that I have 7 followers now, and because I want to get my story out there and make this bigger thank just my story I want to try to get 3 more followers in a 15 days.  So if you know someone that you think would like what I have to say, PLEASE share this with them!!!


Until later tonight!

Blog name

Hello again everyone.  This is just a quick message to let you know that I plan on changing the name of my blog.  Mostly because this blog has become more about Maggie and I's (more of mine) life and I don't think that calling it Gastroschisis Babies Together is ok.  I am up for suggestions though!

An after thought...

Last night, I was thinking about what I had said about the self-esteem book.  I totally think that it is normal that any person who just had a baby has every right to second guess herself.  I think that my "reality" is who I used to be.  Not that I just all of a sudden got disgusting, I am just trying to figure out how or who this new person is that I have become.  I feel like I have had to make a one eighty in my life in just a short period of time, and that I became a totally different person when Maggie was born.  The more I think about it, who hasn't people!  You become a mother, you becomes the person who has baby goop on your favorite top or takes a nap instead of a shower.  I am sure that way down under all of my layers you could find me in there some where, but for right now, I am going to let myself adjust to who I am now.  I know that I am still that girl that I want to be from my "reality".   I just need to learn how I can incorporate her into my new life. 

Our escapes from reality,..

Philip K. Dick said that “reality is that which, when you stop believing in it, doesn’t go away.”  When I started this post I thought to myself, who does not realize what reality is?  I could assume that the realty of Maggie getting sick is because I am a bad person in some ways, but then again the reality of that could be that I was that way because for most of my life I was deceived, taken advantage of, and disliked by most of my peers.  The reality of Philip K. Dick’s quote is that instead of giving something meaningful to us, he is just giving us another vocabulary lesson. 

In reality our realities could just be theories right.  I mean how do we know that the true color of this font isn’t pink or white, but to our reality it’s blue? 

My reality is that I am a mom, a college student, a lover, and according to my fiancé a little crazy at most times. In MY reality I am a mom, college student, lover, and I guess crazy at times, but I also see myself as this natural beauty who doesn’t think she is, an easy going person who could roll with the punches at the best of times, smart and creative, but when I look at myself in a mirror all I see is this disaster of a person.   I didn’t loose the sense of who I am, I am just growing into another time in my life because my life has changed.  That my fellow readers and mother is the reality, MY reality.

Now, most people right now are going, where in the hell did she get this from?  Is she on something, but ironically, the reality is, is that I am ok to accept the fact that I may have some issues.  I think that since I have had my baby four months ago that I am this disastrous person. 

Ok, now that I have established that, what are we going to do about it Ashley?   To answer those interesting question I am going to attempt to do a self-esteem book. Wish me luck everyone! 

Sick Baby

When Maggie went back into the hospital I was terrified and I kept fooling myself.  Telling myself that it was just a false alarm and we would be home in a couple of days.  Every day that we were there I would tell myself this, that was before the doctor came in to tell me that my baby may have a liver disease called biliary atresia.  I hate crying in front of people.  Even Mikey, but I couldn't hold myself together.  I was scared for Maggie, so many possiblities were running through my mind.  They told me that she would need a liver biopsy and that a GI specialist would need to do it. 

UC Davis, the number one children's hospital on the west coast, you would think that they would have a GI specialist, but what was I thinking to assume that?  Don't get me wrong I love the UC Davis NICU.  It is an awesome place, everyone is super nice, they care, and it is on lock down like all the time. 

Anyways, so they told me that Maggie would need to go to San Fransisco.  So San Fransisco hear we come. 

I wanted to tell you guys this part of my long story because Maggie being sick again brought back memories that I thought I could put behind me and never have to remember again.  I have gone through lots of times in my life when I have done this, but things never get solved and they have a way of bitting you in the butt.  Anyways, when you have a child that is born with issues and spends the first month, three months, or first few days in the hospital you start to grow a fear that it will happen again.  I can't really say that it just happens to parents with special needs infants, but with any parent.  It is scary because you don't know what is going to happen.  I feel like I am repeating myself, but it's the way I feel.  Maggie just started being fussy about yesterday at 3pm until Mikey got back from Altruas with the Vicks, both the rub and stuff you put in the humidifier, and saline drops.  I see a huge difference in her and her attitude. 

My point is, is that when the cold got worse then I started saying "UC Davis here we come again, at least Mikey will be down here again too."  I started thinking negative because I just thought that is what was just going to happen."  She is doing much better now, still not feeling well, but better and I know that I shouldn't have thought that way.  Positive thinking is better for you soul, but hard when it lets you down.

The first cold

I am getting really bad about getting the hang of this blogging deal.  I love to do it. I love that people come up to me around town and say that they have been reading it.  It makes me feel great that my hermit life is interesting to them. 

I have barely left the house with Maggie at all.  If I need something at the store Mikey goes, some one to check the mail, Mikey goes, and if I just randomly want a soda, Mikey goes.  Now I want everyone to know that Mikey HATES going to the store and the post office.  I don't know if it is because he doesn't like to leave his chair once he gets the chores around the house done or if he just doesn't like to run into people.  Either way I think that it is really sweet of him, but I have a feeling that he does it so that he doesn't want to be left with Maggie for very long.  Anyways, so Maggie and I start venturing out with him.  Not like going to get the mail or go to the store, but for drives in the mountains or out in Nevada.  It's nice because we get to spend quality time together and I like that. 

The main reason why I don't leave my house is because I don't want to get sick.  It worked for awhile we were all healthy and doing fine, UNTIL we started doing these drives.  I don't know how it happened but Mikey gets a three day head cold, Maggie gets a head cold, and of course if Maggie and Mikey have it, I get it.  It doesn't matter if we wash our hands, I disinfect everything with Lysol spray and bleach, and we try to avoid sick people, we still end up with something nasty.  Normally I don't mind because I can handle a nasty cough, or a splitting migraine, but as soon as I get a stuffy nose I am down for the count.  I can't breath, my eyes feel like they are tired, and my head just floats off of my shoulders like it were a balloon.  Not to mention not matter what type of tissue I use my nose still turns into Rudolph the Red Nose Reindeer. 

I know that I am complaining when Maggie has it too, but don't worry I already feel horrible about her being sick.  The first reason why is because for most of her life she has been a sick baby, but mostly because I know how miserable I am and I can only imagine how bad it is for her.  It's not like she can blow her nose.  I tried all day not to take some cold medicine because if she could suffer through it, so could I.  Unfortunately by this afternoon I couldn't handle it any more I NEEDED SOME RELIEF!!! I put boiling water on the stove with some vinegar in it, it helped clear my nose up for an hour.  I was going to do it to Maggie too, but it kind of burns your already dry nose a little and I was not going to put my baby's head over a boiling pan of water!

So despite how much Mikey does not like the smell of vinegar I am putting it in the vaporizer tonight.  I am wondering if it would work, but I will let you guys know for sure. 

Development

So since we got home from the hospital the second time I started to keep a log that showed when she ate, how much I gave her, why kind of diaper she had, her temperature, and stomach measurements.  I was so freaked out that something was going to happen again that when she had her first fussy day I started crying because that was a sign to look for if the NEO started again.  I would get so scared that I started to give myself nightmares.  They varied in different ways she could die or her having to go back in the hospital.  In each of these dreams by the time she would die I would wake up because I wouldn't be able to breath, I would turn her little light on her Mobile and put my hand over her face to see if she was breathing (side note, this is kind of embarrassing to admit and it makes me sound like I am a crazy person who dreams of her daughter dying all the time, when I state that I would put my hand over her face, I would not actually touch her).  The dreams stopped when I had one when she died of SIDs.  After that I had to mentally tell myself whenever a thought like that came up that my baby was not going to die, she is an angel sent to me, she is my balance, my life.

So I wanted to talk about this book that I have been reading that I am sure that all of you know about.  What to Expect: The First Year by Heidi Murkoff, Sharon Mazel, Arlene Eisenberg, and Sandee Hathaway, B.S.N.  I guess that this is supposed to be like bible of all baby books.  It is a pretty great reference.  I do enjoy to read it and I highlight everything that my baby has met developmentally.  Because Maggie was a month early, I always look at the month she should have been.  For instance she is 3 months, I look at the previous month.  I like to do it this way so that I don't get discouraged.  Anyways, Maggie has actually gone over and beyond, out of 18 developmental mile stones for a 3 month old baby Maggie is doing 11 of them!  I am so excited about this because to me it means that she is a very smart and strong baby and that she doesn't have any brain damage from her traumatic experiences.  The one thing I wanted to point out to all those new mom's is that you can't believe what every parenting book tells you.  I think that we should only read the ones that interests us and form our own personal bible.  We all have different parenting view, so if your 2 month old isn't meeting a milestone, don't freak!  Maggie is accomplishing all these new things, but she STILL wont roll over, not even to one side.  I was freaking out about it for awhile, but when I started to look at the bigger picture she has already accomplished so much and I am proud of my little girl for anything she may or may not accomplish in life. 

Every day I sit at my computer trying to form the words to describe my hospital experiences.  It is really hard.  When I had Maggie, I was prepared for what was to come.  I was ok that we had to wait for her to poop to be able to eat, even though it didn't make any sense to me.  I was ok that she had to have a PICC line in and that we controlled how much she ate and when she ate.  I was prepare and I was ok with it. 

So far I have only had to stay long term with Maggie twice.  The first time was after I had her and the second time was when she started to spit up green bile.  I can honestly say that the first of the two was the easiest to go through because I knew what to expect. 

When we went to the hospital the second time, I learned things that I thought I wouldn't need to know.  For instance if we ever had to go back I would go buy a notebook and a pen and I would recommend that the nurses and doctors note everything, every time they came in, what they did, what they talked about, because in big hospitals you will more then likely have a different doctor or nurse the next day or the next week.  It depends.  This is a suggestion for any mom to be with a baby with a known medical condition or a mother with a baby in the hospital.

At first I was just going to tell you about Maggie and I's experiences, but I found that I am not ready to just spill them out yet.  I know that it would be very helpful to most expecting parents or parents who are just looking for information, but I am still having a hard time talking about it among friends.  The first go around was a piece of cake compared to what Maggie, Mikey, and I have been through.   I want to tell you about it, but I think that only a little will have to come out at a time. 

Anyways, writing things down was my first suggestion.  When I say that I mean it too.  In this notebook you buy, take notes when you talk to doctors or nurses, or any other employees that come and speak to you.  Write down questions you have, that way you know that you will remember them later.  My doctors would come in to talk to me about Maggie and they would flood me with so much information, but when you are in a situation like that your mind is filling with other things, with worries, stress, and what did I do wrongs.  You can help but think about that kind of stuff.  You heart is in trouble and you don't know how it happened or how to fix it.  When you get a minute to breath your mind will start racing in all different directions and you wont remember a thing that the doctors said or what questions you had already asked, but if you re-think them you can write them down.

When my Doctor first told me that Maggie was sick I just started crying.  They were trying to take my blood but all I could do was ball my eyes out.  What had I done to deserve this, what was going to happen to my baby, why did God have to punish something so innocent, what was our life going to be life.  I mean I just kept spinning and spinning in worries.  When I heard that something was wrong with Maggie, I knew right then and there that I was really in love with this little peanut in my tummy and I was going to do everything I could to make this better.  I was very lucky to have a friend with me so that she could listen and then later on my family. 

Hosptial Stay Part 1 The Perfect Baby

YAY!  So I see that I have two more followers!  It makes me very excited and it also encourages me to write more!  Thank you!

When I was at the hospital after Maggie got sick again, I was in the pumping room of the NICU, there are only two stations and they were both occupied.  One was a lady that I had seen at the Ronald McDonald house with her husband and the other was myself.  A lady came in and started talking to the other mother stating that she was coming into the NICU when she saw a mother crying in the hall way and when the lady asked what was wrong the crying mother stated that she was upset because her baby had jaundice and that she wasn't going to be able to take him home for a couple days, or even hold him.  The lady that was telling this story proceded to say she should be grateful that her baby only has jaundice, that HER baby was born at 28 weeks and that she has been at the hospital with him for like 2 weeks and still hasn't even gotten to hold him.  The other mother pumping was agreeing with her and they continued to critize other parents with babies in the NICU.  I got irritated, grabbed my stuff, and walked out. 

After you find out that you are pregnant, you go through a ride on the emotional roller coaster, or so I did.  You are shocked at first, scared, and then once you finally accept it you become happy and excited.  After I accepted that this is what was in my stars I was able to start picturing my perfect baby.

Most parents-to-be imagine their perfect baby, their laugh, smile, hair color, eye color, and so much more.  They look to the future to see how he or she will be and what life will be like.  Of course no one can predict the future because it changes constantly, but I am guiltly of this.

When I first started to write this post I wasn't being open minded and I was being very judgemental and I think that all parents do this because when there is something wrong with your baby it is more serious than another person's baby's condition.   My best friend's little boy had jaundice really bad when he was born and it scared and upset her very much.  Maggie was born with gastroschisis and this lady's baby was born at 28 weeks.  I think that we all should be grateful for our situation and know that everything is going to work out.  Whether it is jaundice, prematurity, a deformation, or a brain swelling, our baby's case is always going to be worse than the others.  It is not our fault at all.  It is just a traumatic thing that our babies and ourselves are going through.  So my point is that whether your baby has jaundice or gastroschisis it is still a serious issue and it is still tramatizing. 

When we are pregnant we don't think about what else could possibly go wrong when we do everything by the books.  When something does go wrong we blame ourselves even when we are told that it is not our fault.  After I had Maggie the doctors asked me if I lived in a rural area, I told them that I did and asked why.  Their response was because they think that there is a connection between some sort of fertilizer that is use in most rural areas that is dropped on crops by an air plane.   The people who live around here don't use the type of fertilizer they were talking about ( I don't remember the name of it), but it made me think that if I would have lived some place else that this wouldn't have happened.  No matter what the doctors told me I always blamed myself for it.  I think any parent would. 

A Mommy Moment

Mommy Moment- 

So, as Maggie gets older and I become more like a mother, I have been having mommy moments, something every mother says that she wont have, but end up doing.  I have had several I think, but the ones that make me chuckle at myself are the best.  Anyways, the day before yesterday Maggie was being SUPER fussy.  It was like she just woke up being Miss Grumpy Pants.  It kind of concerned me because that was one of the signs of her relapsing again.  Anyways, so this lasted until yesterday morning.  So I got very little sleep.  Later that evening I decided to have Mikey take care of her for her first late feeding so that I could catch up on some Zzz's.  I heard her start to wake up and instantly things started running through my mind, did he notice I had already made a bottle for her, I hope he remembers to change her diaper...I caught myself and had to laugh because you always hear about mothers leaving their babies with the father the first time and they brief them like they are the babysitter.  It's hard not to do it though because in reality we are all single mothers.  The father's participate with the simple things such as holding, making a bottle, feeding, and occasionally changing a wet diaper.  In actuality all these things are helpful, but where are they when the baby is screaming at 2am or you are trying to clean the house and finish your homework for your online college classes?  They are in theory a babysitter who just has unconditional love for the child.

Anyways, I felt horrible because Mikey is a GREAT father and has been very helpful even though I get attitude sometimes.  I felt bad because I knew that he would do a good job and that I can't do that to him.  If he has or had a question he would come ask.  He does a great job with Maggie and that is all that really matters.

Maggie Rose

When I was 16 weeks pregnant I found out that my daughter had a condition called Gastorschisis.  Gastroschisi is when the baby's intestine or other organs are outside of the body through a small whole, normally on the right side of the belly button.  When I found this out, I was scared.  All I remember thinking was, what did I do wrong?  How could this happen?  I was, am, so thankful that my mom and fiance could be there with me listening to the doctors when I could not.

When I found out that I was pregnant I was so scared, excited, and a little worried.  I had just been laid off, my now fiance and I were on the rocks, and I was so young.  I was worried that I was going to resent my baby for missing out on things that I should have been experiencing at my age.  I was worried that I wasn't going to be able to give her the life I knew she deserved.  I found myself almost relating to teen mothers at 22 years old.  No more hanging out with my friends until all hours of the night, no more wild parties, no more splurging, I knew that I was going to have to really change myself, my life. 

I was also worried that Mike and I would not make it.  We were living apart from each other after living with each other for 3 years.  It was my stupid fault, I made a mistake and we were trying to move through it together.  I grew up without a father and I knew that I didn't want my daughter to have to go through the same thing.  I was always jealous of my friends that had both parents in their life for everything.  Don't get me wrong, my mom is my hero.  She raised my sister and I by herself.  She got her teaching credential and gave us a very comfortable life.  I knew that if I had to I could do it too, but I really wanted Mikey with me.

Anyways, the pregnancy was hard.  After I went to the ultrasound that confirmed that it was gastroschisis I was a mess. I looked for information, anything, from doctor notes to other mothers blogs.   It seemed like anything that I found was vague and I still couldn't understand.  The good thing about it was that I was going to have to see a high risk pregnancy doctor 2 times a month, in addition to my regular ob doctor appointments.  I was thankful for this because I would think of questions, write them down, and I was able to see a doctor enough to ask and understand.   That is one thing that I would recommend to any parent that has gone through this or is going to go through this WRITE YOUR QUESTIONS DOWN!! It is hard to remember to do that, but it really does help in the long run.  Even when you are at the hospital after birth. 

My due date before I found this out was November 4th 2010.  I had Maggie Rose on September 29th at 12:15 am, after 30 hours of pain and 4 pushes.  I went in early because my doctor couldn't see the baby breathing and she felt uncomfortable about it.  They induced me and as much as I wanted to be a trooper about it, I asked for an epidural after the first 12 hours.  She was 4 pounds 6 ozs and perfect in every way. 

Knowing what to expect was nice.  I was able to relax.  In those 30 hours I had doctors and nurses coming in to update me and explain to me what was going to happen.  Luckily, they were able to put it all back in and stitch it right up.  The first part was over and know I was just going to have to wait.  Wait for her to be able to go home.