Tuesday, April 2, 2013

Long Time, No See.

Well.. It's been months, friends. I can't believe how much time has gone by. I can't believe how much has changed! 

As you can imagine, I have been busy. Most people will tell you that it is not easy being a mommy of twins. But I can express to you exactly how I feel about it. Cameron and Sophie are my first children. Prior to getting pregnant, I had the highest doubts about my ability to parent. I was never and still am not worried about the years to come. I was always been more concerned with what to do with a newborn.. and then I found out I was having two. Uhm.. WHAT?! Panic button. Then I found out they had a birth defect I never even heard of. Seriously? I'm a firm believer that you are never given anything in life that you are not capable of handling. Now, I don't say this because of the way the sentence is presented but because you never really know how strong you are until you have no other choice. If you would have told me two years ago that I was going to have twins WITH a birth defect, I may have never gotten pregnant because I would not have had the confidence that I could pull it all off. But now, I consider myself pretty close to Wonder Woman. So there I was.. Pregnant, terrified that I wouldn't know when to feed my children, wouldn't know when to change their diapers.. or even how! Ha! Gastroschisis is a very serious complication and I knew literally, nothing about to top that off. Oh and just imagine me "googling" it in the wee hours of the night, knowing whatever I found would only encourage my pregnancy insomnia. Oh the hard times. I say that in complete sarcasm. Everyone was right; it all comes naturally.

Yupp. I've probably made about a billion successful diaper changes to date. I've probably made a billion more ounces of formula for my hungry little ones and I've probably had about 90 billion panic attacks at random moments because, well, you never know what could happen.

I've noticed that this blog is already a compilation of ramblings. So forgive me if this pattern continues.

But really. I'm going to go ahead and say that it's easier than I thought it would be. Of course we're not in the terrible twos or anything crazy since they're only 9 months but I genuinely thought I would never sleep again and that my house would be a disaster, all the time. That's not true. I get a full nights rest every night, granted I'm not awake surfing the web or spending a ridiculous amount of time of Pinterest. Ugh. Oh and my house is pretty clean. You shouldn't eat food off my floors or lick the toilet seat but you get my point. I say this as if I don't complain. I do, trust me, I do. Sometimes I'm just sick of cleaning and I get really frustrated with Cameron and his fits - but at the end of the day, I know that I'm lucky to have all that I do have and I do not take any of it for granted. That's what makes it all so easy. Sometimes I just look at them and I'm still amazed that I have two beautiful babies sitting, crawling, or yelling in front of me!

So really, this is a blog about my Gastroschisis Twins. So let me talk about that. Now that I have all my random nonsense out of the way. Cameron ended up coming home on September 12th of last year. Yeah, it's been that long since I've posted.. Shame on me. :/ But he came home with a GTube, another thing I was terribly scared of. Actually, I've done an awesome job, if I do say so myself. I always tried feeding him by mouth as much as possible so that he would learn and regain that ability because eating by mouth was the only was he was going to get rid of the GTube. I wanted him to be free of this thing ASAP. Well.. he hasn't used it in 5 months and he's doing great. (Yes, he still has it.. but I will get to that) Anywho.. He eats everything by mouth. He has his formula, his pureed baby food, his fresh fruits, his rice cookies - all of it, by mouth. I am a pretty proud momma. It was a rough start but we are an awesome family and will continue to grow and be more awesome! We've had a couple of bumps though, no doubt. 

Cameron has a serious hate for tummy time. He is getting better but I know that his GTube bothers him. Most doctors say that's weird and that it doesn't both most kids. But I know my Cam Man hates it and wants it out as quickly as possible. He's doing great though. He's in the very early stages of crawling, although his sister has been scooting for a month or so. Ha! I also realize that every child develops differently and at a different pace so no, I'm not one of those moms of multiples who thinks that because one baby does it, the other should to. I'm a pretty realistic person. Anyways, Cameron does get 2 monthly visits from a physical therapists and I set 30-60 minutes aside during the week days to practice things he's falling behind on. Sometimes more depending on what we have going on that day and sometimes less because of the fits I mentioned above. Rest assured, I have no doubt that he will successfully crawl at some point. I'm not trying to rush him but I'm also doing all I can to help. 

Now.. Miss Soph-a-Loaf. I don't even know if that's how you would spell it?... But that's what we call her some times. She's a sweet little one. Well, actually.. she's kind of mean but she has such a sweet smile that it's easy to forget that she just stole Cameron's toy and put it in Max's (our lab) bowl. Sigh.. But anyways. She's doing great. You would NEVER know she was born with Gastrochisis. She's been a great pooper. She's been a great eater. She's doing a lot of great things. Unfortunately she does have a helmet. Now.. this is a very sensitive subject to me. When I was about 16 or 17, I was with someone in a McDonalds. We saw a baby with a helmet. At the time, I was pretty dumb and didn't know what exactly they were for. Well, this fool proceeded to laugh at the baby. Asshole. A lot of people just don't get why babies have to wear helmets. Sophie has what you call plagiocephaly from torticollis. Or a misshaped head because she looked too much to the right and her neck muscles were too tight. She also does phycial therapy to help her stretch her muscles out but this isn't that bad and we typically work on this ourselves and she's doing great. She's had the helmet for 7 weeks now and her head is almost completely different. Again, proud momma.

I guess I'm just updating to update. 

There's not a whole lot going on other than the fact that I just added school to my list of many things to do. But I enjoy it and it doesn't take time away from my kids or my home-making things so it's all good. It takes away from my down time but when you're me and art is your passion - and you're going to school for graphic design - uhm.. yeah, down time and creating master pieces kind of just go hand in hand. 

Anyways, that's all I have for now. I'm going to try to make an effort to post and keep up more - but really.. I'm horrible at this sort of thing. Soon, I will post pictures of their belly buttons because a lot of people are curious and well, I'm here to please! But for now.. here is a picture that I drew of them.. (for school.. hehe) and below that, a couple of recent photos of my sweet babies!!

Thank you for reading! Any questions - email me at gastromommy@gmail.com. Yeah, I've been pretty crappy about checking that too - BUT I'm DEFINITELY going to start checking that at least daily. 

Alicia <3

Friday, August 31, 2012

Cameron - Please Come Home!

I can't believe it's been over a month since I've posted. It feels like life is just flying by. Good thing I take pictures like nobody's business!

I guess I will update about Sophie and Cameron (:

They have both doubled their birth weight! Well, Cameron - almost! 

Sophie is home and loving it! She's getting so big, I can't believe it! She scoots backwards during her tummy time and she's so close to rolling over. I'm a proud mommy. 

Cameron is also doing excellent! He did have a set back, as I mentioned before. He ended up needing a second surgery. Which was actually a compilation of 3 procedures. Wow. I was beyond nervous... He had hiatal hernia repair. They wrapped his stomach around his esophagus and closed the space between his diaphragm. They also placed a GTube for feeding purposes. Just a couple of days after his surgery, things weren't so well... He got an infection. I cried every moment no one was looking. I was so worried about him, I barely slept.. :/ BUT he prevailed! A few days later, his cultures came back negative for infection! What a relief... He's being fed a certain amount of special formula for GI disorders through his GTube per hour. A few days ago, the finally let him start eating by mouth too! Yay! Not a whole lot, but just enough to satisfy his oral fixation. (: He is getting better every day and they said he should be home by next weekend! I am so excited. It just feels like a dream.. It felt like I was never going to have both my babies home at the same time!

Anyways... life is busy and it's getting busier!

I apologize for their not being a whole lot of recent information but even this short update tells all! 

<3 Alicia

Sunday, July 22, 2012

Keep Our Little Guy In Mind!


This is going to be a pretty short update but you'll get the idea. Besides, most of you follow me on FB and already know the deal for the most part. 

Today was a pretty big day for us in the Rhein Family! (:

We brought our beautiful daughter, Sophie Marie home today. Well as close to home as can be right now. We are still in he Fisher house until Cameron can come home as well. We can't wait to be home and settled, of course. The most important thing right now is getting Cameron home though... 

Our little man is having a little bit more trouble than his sister. Sohpie handled the surgery very well. She's eating like she should be and pooping just fine! Cameron is also eating enough and pooping just fine! Unfortunately he has episodes.. His heart rate drops into the higher 50's, lower 60's... :/ Originally they thought it was just from reflux because babies with Gastroschisis tend to have more issues with reflux and bowel movements. After trying numerous ways to maybe lessen the amount of reflux, nothing worked. So they did an X-ray after having him swallow Barium (a liquid that allowed them to see where it was moving to - that way they would know where his food was also going). The discovered he has a Hiatal Hernia. Google it, I'm too tired to explain lol

Anyways.. So for now they are trying different ways to make his reflux less of an issue.. But nothing seems to be working. They are trying medicine, less food more often, and keeping him up-right for a while after he eats.

If these things don't work, he will have another surgery to fix the Hiatal Hernia.. For now, we are all hanging in there!

I'm sad he is by himself in the NICU now.. I wish him and Sophie didn't have to seperate. I am glad she is doing so well but it hurts me so bad to see him suffer. :/

Wish us luck in the next few weeks. <3

For now - I am exhausted.

<3 Alicia

Sunday, July 1, 2012

They Have Made Their Arrival!

Pump, NICU, Sleep, Eat - That is exactly what the past seven days have been for me and I couldn't be happier. Especially considering I am the master of sleep and I get pretty much none now. I will only become more sleep deprived when they are home, but do I mind? No, not even close. My love for Sophie and Cameron outweigh any type of love I've ever felt before - for people, things, ideas - everything. I am in love. <3

Charles Cameron <3

 Sophie Marie <3

Oh, wait, I guess I should announce the big news!! Sophie Marie and Charles Cameron were born June 23, 2012! Sophie at 1640 and Cameron just a minute later at 1641! My life will never be the same. Initially they could only give us estimated weights of them both being around 4 lbs. 4 oz. Which made no sense whatsoever considering how much smaller Sophie is! Then they gave us some newer weights of Cameron being 4 lbs. 16 oz. and Sophie being 4 lbs. 5 oz. Of course, they have both lost weight since then. They cannot eat and their tummy's are being pumped on "tummy juice". Once the tummy juice is all clear instead of a darker green - and they make a bowel movement - they can start eating! I cannot wait! Cameron tries to eat his paci and I want to cry every time I see it because I just know he is so hungry... :/ But soon enough, he can eat!

I am doing my best at pumping. I have had quite a few set backs though. For example, last night the power went out here so I had to hand pump since the pump I have has to be plugged in - on top of that, the breast milk I had in the freezer went bad and all that I pumped over night had to be thrown away. Good news though - the supply has kept up through this and has even gotten a little better! Nothing compares to pumping at the NICU though - next to my babes, I get quite a bit more. (:

Anyways, I should mention a few milestones, scares, set backs. The business with the twins... So let me start at the beginning. Well, we went for C Section. That was pretty rough on me, recovery wasn't so bad but I didn't handle the actual procedure to well for some reason, oh well. I'm okay now! Anyways. Sophie was first but I had no idea she was even born... She didn't cry at birth. :/ So she had her little set back. Cameron made his appearance one minute later and he definitely cried! I didn't get to see the bowels outside before they were put back in, but Dad did. I'm really glad I didn't get to see them... I don't think I would want to see it. A few hours later, the doctors were in and out of my room, updating me on the little ones. Before I regained feeling and movement in the lower half of my body, the bowels were back in! I was so amazed... and so thrilled! Now the waiting began... I didn't get to see them until 0200 the next day! I hadn't slept because I was so eager! To be honest, I expected a longer wait but I was so ready to see my babies! Before I went down to the NICU I was told that Cameron had a moment in surgery where his heart beat dropped pretty low because his breathing tube became dislodged... Imagine my emotions at that point.. amplify it by a trillion. Yeah, it hurt. My little boy is such a trooper though, he seems to have recovered fine with no long term effects!

I will never forget making that trip to the NICU and seeing them for the first time. I have never felt a better feeling. They were here and they were doing great!

There really hasn't been any downs since then, only ups. But the hard part is yet to come they say. They still have to learn how to use their bowels properly and digest yummy foods. That itself will be a battle but it's a battle I can only do my best to prepare for. We can only hope they know we will be there for them no matter what. I miss them so much when I am not there... ugh.

Yesterday, day 6 - I had a bit of a mental breakdown. The hormones finally caught up with me. I hope that I cried it all out because I know I need to be strong for them. If they can go through all of this, who am I to think I have it worse? They need me and I need them. <3

I know, I've kind of talked in circles with this one but with it being the best week of my life and not knowing where to start, you just kind of have to deal with me :/

They are a week old today! So let's hope the poop soon! Oh, I forgot to mention...  Cameron has already pooped! But they can't count it because it was before the fluid from his stomach had been pumped. :/

Okay, but I will leave you with this - Pics from today!

Cameron <3

Sophie <3

SIDE NOTE: This was supposed to be posted yesterday but we had an interruption with internet connection so here ya go, a day late!

Sunday, June 3, 2012

Lots of Rambling. Ooops!

As most of you know, the babes and I had a recent trip to the hospital. We spent just 2 nights in there. What a drag. I just want to clear some things up about the "scare".

Prior to going in, because I've been told so many times that my case is so rare (both babies having gastroschisis) - resulted in doctors telling me that even if the slightest thing happens I need to come to labor and delivery. I didn't really see this as a problem as the babes are really just chillin. Well on Tuesday, I had a baby shower to attend. It was held by the Post FRG leader here at Walter Reed. It was a lot of fun! We got some goodies and play some fun games - which reminds me, I need to freshen up on nursery rhymes! Anywho... Me being pregnant, after the hour and a half of excitement, you know I had to go tinkle! So on my way out, I stopped and "utilized the latrine". Hahah. Yeah, my mucus plug decided to come say hi! Well prior to this, I had a few braxton hicks so I headed straight for L&D instead of going back to my hotel room - goodies in hand and all! Well I got there and they were surprised that I had come in just for losing my mucus plug - of course once I explained the situation, they were more understanding. Well check up went okay. I was 2 cm. Nothing to really worry about since it didn't progress while I was there. My cervix was still more than 3 cm sooooo everything was really good. They kept me there "just in case" something did change. But 2 days later, nothing changed. I was still having irregular contractions and staying calm. They did give me 2 steroid shots to help Sophie and Cameron's lungs grow just in case they do decide to come a little early. So I am relieved about that. All in all - I just wanted to clear things up. I've been hearing that I was in labor, which isn't true. I know if I were on the outside looking in, I'd probably worry the same way!

I do have a great support system between Brandon's very sweet and welcoming family and of course my family who are all so crazy but all have the best intentions.

I guess I have been doing a lot of reflecting lately on what really matters to me and what bridges I better not burn and which are better left to ashes. I know in my last post I said that I wasn't getting support where I needed it. Well, that's not entirely true. I thought at the time it was because I felt like some people in my family were just being selfish and not understanding my stress. Looking at the situation and the past overall - thanks to my Aunt Emily, I realize that I am also being selfish.

Okay, let me make this more understandable because it looks as though I am just rambling. Haha. My mom and I have never had the best relationship. I always get jealous when people say things like, "I have the best mom in the world!". Because I have never felt that way and I'm not saying that I will ever feel that way but I do know that I am learning to appreciate her more and more every day. My mom was never really there for me the way most mothers are there for their daughters when I was "growing up" so a lot about being a woman, I learned on my own - and let's face it, I'm still learning! I was severely emotionally damaged when I first left home and I blame her for the majority of it but now that I have grown to be a better, more mentally stable person, I realize it wasn't easy for her. She had her own emotions and her own demons to face. She is more emotionally damaged that I could ever be so I'm learning to forgive her for all the things I blamed her for while growing up. I haven't always been the best daughter either.

Since she arrived here, I have been so stressed out because she puts me through an emotional roller coaster, daily! It's not easy but I know it's better I face it now while she is here rather than later when she is gone. I wont bore you with details but let's just say I'm going to do my best to ignore all the ignorant remarks she makes and the selfish things she does. I understand why she does this and I do not expect her to change this late in life so I will just bite down and try handling it better myself. I still love my mom, no matter what. I will still go out of my way to make her happy. I also can admit at times I make "smart-ass" comments to her and I disregard her feelings. The goal here is to work on that. I am hoping that maybe if she sees I am being nicer to her, she can consider my feelings a little more and understand where I am coming from.

Okayyyy. Now that I have bored you with 2-3 paragraphs of nothing that you probably care about, I will move on! Hahah.

Besides, this blog is about my little ones (:

We have two appointments tomorrow. The first one is just a check up where they get baby heart beats. The second is the wonderful non-stress test. Since I am on bed rest, I guess I will have to take the shuttle to instead of walk. This is killing me. Don't get me wrong, I love resting and being lazy on some rainy afternoons and even just days that I don't feel like doing anything - but seriously? I'm supposed to be a bum until I pop these things out. Omgoodness. I need board games in my life. Unfortunately there is not a PX on this post. Imagine my luck! My husband did leave the PS3 here with me though - I am very thankful. I do love me some Call of Duty. I also enjoy Netflix! Since the babes will be here within a few weeks, we all know that I am just not going to have time for those simple pleasures here soon. I will have bigger, better, sweeter pleasures! I can but cannot wait to meet my little ones!!

With the army being the way it is - imagine my embarrassment when a nurse asks me if I have car seats and I have to answer no.. Followed by her asking me if I have anything ready for the babes and the answer is still no. Mother of the freaking year, right here! Right. The most frustrating part of this whole ordeal is knowing I don't even have a home to call my own, let alone a nursery for my babies. We don't own a crib, we don't own a dresser, a stroller, car seats, diapers, breast pump, bottles, nothing! It's a horrible feeling. Hopefully within a couple weeks we will have a home, at least - but even then, it's cutting it close. Brandon will have to do all the shopping since I will definitely still be on bed rest then! I have made a pretty detailed list though - so I hope that helps. Most of the stuff is from the good ol' Wally World just to keep it simple! I am not interested in going all out. I would be if our situation wasn't as it is, especially with boy/ girl twins. I mean come on, since I was little all I've ever wanted was to be a teacher and a mommy. Well I'm knocking one out right now! Woo!

To top things off... Our household goods - seeing as how they were just shipped out Friday will not be here until pretty much August. I've never had a C-Section before but I can only imagine that getting up and down from an air mattress is not going to be the best thing for me. :/ I am trying to talk my husband into buying a new couch.... One - the couch that's being shipped from Germany isn't the most comfy, cute, cuddly couch. I can live with that but two - if we were to upgrade before the furniture got here, sleeping on the couch would be a lot more beneficial for my healing body. So if anyone wants to talk him into this for me, I would greatly appreciate it! He does his best to be there for me and relieve my stress but dear lord, some times he needs a push lol <3

So back to the whole, I "can" wait thing. I can wait because one - they need to "cook" as long as possible and two - we need to be better prepared. So wish us luck along the way! Any help is GREATLY appreciated! Thank you to the Howards, btw! They let us mail all our goodies to their home from the Baby Shower Sunny & Laura hosted for me before we left Germany. I do have great friends. I am lucky to be closer to Megan but sad to be far away from those in Germany. The military has it's way of making life bitter sweet. <3

Okay, okay - I get it. Bed rest has turned me into quite the blabber mouth. (; As always, thank you for reading! (:

Monday, May 28, 2012

Calm Before the Storm!

Omgoodness! We are so close to having two sweet little babies! I am excited/ nervous/ and everything in between!

I do have some great news though! Thanks to Lyndsey Carroll! She emailed me a while back with her own personal story with her son who was also born with Gastroschisis. You can view his story here. It's so touching and it definitely brought a few tears to my eyes so be careful! She is so sweet! Unfortunately, it took me a while to reply to her since I really didn't feel like random people I didn't know were reading my blog! So I didn't think twice to check my email as often as I check my Facebook! I wrote her back as soon as I came across the email, even if it was pretty late and to my surprise, received another email within the hour! She sent me a link to another woman who recently had twin boys with Gastroschisis! Whoa! After everything the doctors have been telling us about the rarity of our situation, I am soooooo excited to meet another family going down the same path we are. Her babies are so sweet! Twin boys (: Little miracles! They had silo bags which we will not have according to our surgeon. So far from what she has told me, the complications were pretty minimal compared to other stories I have came across. She is blessed <3

I am trying hard to prepare for not being able to hold my babies for hours, days, or even weeks. I am trying hard to prepare myself for seeing them for the first time. The mixed emotions of being excited and devastated all at the same time are sure to kill me but I know I have to be strong and hold it together for my babies. Last night, I had a pretty hard break down. I guess it's to be expected since I haven't really had that "let it all out moment" that I usually have with live changing events. The hardest part is not knowing what will happen. I have so many questions... Of course there's the typical "why me, why us?".. "will they be okay?".. "what if the worst that can happen, happens?". Like I said, it's hard not knowing. I am calm and collected now because I know my babies do not need to feel me stressed, stress themselves out and try to make an early arrival. The worst part about that is being "blamed" instead of comforted. Yeah, "Well, that's probably why you are having contractions. You are stressing too much." Heads up, it only makes it worse when it feels like you are blaming me. I wont say who said this to me. I will say thank you to all my friends and recently made friends who understand whether your baby has gastro or not. I appreciate every aspect of help and support because I feel like sometimes, I'm not getting it where I should be. I am just doing my best to stay positive!

The army has failed me completely and continues to do so. So that's just another great stress factor in my life. The only thing I am greatful for from the Army is actually putting me here at Walter Reed, TDY or not so that my little ones can receive proper care. That and getting me out of Germany period. I have never and I know I never will be as stressed as I was in that environment. I guess for now, there is not much left to say!

I certainly will not forget to mention this special day regardless of what situation the army has put me in... Happy Memorial Day!

 This is a quote I came across on a recent trip to Washington D.C. So moving. As a soldier myself, I pay great respects to my brothers and sisters in arms before me.


Tuesday, April 17, 2012

What a Rollercoaster!!

Ugh! The army makes me sooooo angry sometimes! I definitely could write a book on what's been going on but I've decided not to go into detail. It's been a while since I've written and trust me, it's been one heck of an adventure. Good news, I'm finally stateside and have regular appointments with doctors at one of the best hospitals in America. Bad news, I live in a hotel! Well...

We've been living in hotels for a little over 2 weeks now. Within that time, we've lived in 3 separate hotels. How exciting!!.... Not. Fortunately our last move will be this Saturday - back to the best hotel we've visited since being in Country. That, I guess I can't complain about. 

TDY pay?! Pffft - forget it! While we are supposed to be getting $$ to cover our food and lodging expenses - we aren't. The paper work was done all kinds of wrong! So we've been paying out of pocket since we got here. Now - sooner or later we are supposed to be reimbursed for about 75%. It would be 100%, but since it's an advance - I guess that changes things. Although, in my eyes it really shouldn't. I believe we should be reimbursed 100%, no matter what!! Gotta love the way the army works! Yay! 

Orders... Uh... yeah right. So far only Brandon's have been approved - which makes NO SENSE - I'm the patient!! Hahaha, fail. But hey, they can continue to pay me to live in hotels if they want to. Thing is - we can't move into a more permanent place until we are officially stationed here. And we can't be stationed here without those orders. Imagine that, right? It's still a waiting game. Everything will eventually work itself out, I know that. It's just that the whole ordeal is a stupid mess that could have been prevented. 

At this point, all I care about is my babies and their health (: We had a visit this morning and the poor things... they look so cramped!! And their bowels cover so much of the ultrasound, I just want to hold em.. I just tell em everyday that it will be okay and they still have to take care of each other - even though our little boy is quite the nuisance to our sweet little girl. Sigh, she will prevail one day! (: The good news is that besides their bowels - everything else looks perfect!! So I have a good feeling about em! I can't wait to meet them!! Ugh. 12 weeks from now is going to sneak up on me but hey, I'm ready for it! 

Oh, I forgot to mention! We have to deliver at 37 weeks. The doctors said anything past that puts the babies at higher risk. They say that the amniotic fluid could really harm their bowels and that's one thing we really need to avoid so that the bowels can be put back into place properly. As of today, I'm 25 weeks and one day. And it's definitely starting to get uncomfortable. :/

Today, we seen that the babies are lying basically on top of each other. Both heads are on the left side of my belly - and feet on the right side. Lol cute little things, head to head. (: at least his butt wasn't in her face! We didn't get any pictures today but I'm sure we will next time! We are basically the talk about all of the OB clinics. I guess both twins having gastroschisis is incredibly rare. I know I've heard of it once or twice before - Oh you know I have to get my research on! But it's not like I've heard a billion stories... So hopefully mine is a successful one. I love my little ones so much!! 

Well, I guess for now, I'm out of words. But hey, next time I'll come with some pictures! Some belly pics and maybe even some more baby pics! (: 

Thanks for reading!!