Tuesday, December 27, 2011


I hope everyone had a great holiday!  We certainly did! Lots of great family and fun. To catch up I'm officially 32 weeks along and as anyone whose ever been pregnant knows that's the big milestone that means you better get your butt in gear because a baby is coming soon!  We had another appointment today and as long as the neurosurgeon can sign on we are official for little Eddie coming on February 14th. Happy Valentine's Day!

The appointment went ok today. Little Eddie's ventricles have grown in the last 2 weeks they are now 1.8 and 2.2. :(   That stresses me out a bit but I know with him growing comes ventricles growing it would only make sense. A little piece of me just wants to hear some sort of miracle information to change things. We won't know how anything is affecting his brain until he's here and has had an MRI.  Fingers crossed it won't have much affect.

The doctor also did an exam today and my cervix is thinning and softening which is great if you're having a normal birth but seeing that we're trying to schedule everything and push this pregnancy as close as we can to my due date, not so great. Also, seeing as I'm having killer "contractions" all night (which is even making writing this difficult) needless to say I'm not having the greatest night. Luckily they are all over the place time wise.

So since I'm totally losing focus I'm going to sign off tonight and try to get some rest. Especially since I'm supposed to be paying attention to movie night with the hubby!

Goodnight all!

Wednesday, December 14, 2011

Another boringish appointment!

Yesterday was our 30 wk appointment and we had an ultrasound and appointment with the OB and we also had a consultation with the NICU.  The ultrasound went great, ventricles went from 1.4-1.8 and according to the doctor that can easily just be a misplacement of the cursor on the screen. So YAY 30 weeks and the ventricles haven't done much which is awesome! We're really hoping they stay small or get smaller and we may not need shunts! Fingers crossed. We also found out that the opening on his back is only 1/4"-1/2" wide and long which is awesome since this means low infection chances and easy healing time. We've also found out that Feb 13th or Feb 14th is a likely date for little Eddie to be scheduled to be here. We're hoping for Feb 14th, nothing like bringing all that love into a day about love! 
We then met with one of the NICU doctors also and took a tour of the NICU. He was such a nice doctor so cute he kept telling us how great he thought we were and what a good feeling he had about us.  Telling us how positive and amazing we seemed to be handling it all. A lot of people tell us this, it's hard for us to understand. We feel like what would we not be positive about? We know there are a million worse positions we could be in. We're bring a beautiful little boy into our family, exactly what we've wanted.  We've overcome a crazy couple of years in our relationship and found our way back to each other stronger than ever. From where I'm standing the world looks pretty bright. Don't get me wrong. I'm emotionally drained and have some tough days. Today included. I cry more than normal (although I'm sure some of that comes with being 7 months pregnant) and I worry a lot about the times ahead, but all in all thank god for my extremely silly husband and daughter.  They keep me giggling all the time. Their energy is infectious! I hope Little Eddie has that same infectious personality!
Here's a little Eddie Bella personality to make you giggle!

Monday, December 12, 2011


Funny how when I was pregnant with Bella I was excited and scared at the same time. Scared mainly of just the unknown. I hadn't been around a lot of babies and had no clue what to expect.  I don't remember being very nervous about labor although, I think I didn't freak out about that until my water broke and I realized she wasn't going to be protected inside me anymore.  This was it! A baby was coming! When we found out we were having another little bundle I was excited to have a "I know what I'm doing" pregnancy. How hard could it be I've already done it once before.  Now I find myself (especially today) full of anxiety of the unknown again. Maybe more this time. The weird thing is I'm not so much nervous about the challenges our baby and ourselves will face with the SB diagnosis but more with small things like the c-section, I'm freaking out about being cut open while I'm wide awake right there. It's just not normal! They say you can't see anything but just knowing it's going on is too much for me!  Get the smelling salts ready because I'm sure I'll pass out before they even get the baby out!  I'm pretty nervous about not getting to hold my little guy right away, all I keep thinking is some nurse is going to be soothing him and stuff before me! I want to be the first person he bonds with and no one else! There are about 10 million other things giving me anxiety but if you know me you know that this is nothing new.  I'm usually a bundle of nerves.  A certified crazy person! I fixate on trivial anxieties and let them drive me nuts to later realize it isn't that big of a deal.  So tonight is another one of those nights.  Tomorrow is our ultrasound, ob appt, and consultation with the NICU. I think we may also be finding out a tentative date for the c-section. That I'm most excited about since I love to plan.  I'll post tomorrow night to update you all about our appointments. Let's cross our fingers for another "boring" one this week! :)

Sunday, December 11, 2011

Epic shoppng!

Again, I've lagged on the blogging! Shame on me! No excuses this time either. :( So yesterday we headed out to the mall, mom myself and gram to go register for my "sprinkle" and get some Xmas shopping done. After all these years of us all shopping together I should have known better. Six and a half hours and we didn't even finish one floor! We are not quick shoppers :) Throw in 7 months pregnant and fibromyalgia and needless to say I'm dragging today! Who cares I feel like we got a ton accomplished! This Xmas season I've been feeling like I always have a long list of stuff and none of it gets done! Plus I've been getting a good amount accomplished for work too. This is my favorite holiday and although I didn't put on my usual crazy decorating hat, I did add a few things around the house!  Every year gets more and more exciting watching Bella get into the holiday. She's insistent of celebrating all holidays of this season Hanukkah, Kwanzaa, and Christmas. She attends a catholic school for pre-k (even though we're not catholic, and I think we're probably the only ones) and keeps asking the teachers to sing Hanukkah songs. They even played dradle with her. It's so cute watching her use her own words for things like "Cheez-It's" for "Jesus" and "cradle" for "dradle" it's super cute because she usually has a better vocabulary than me and pronounces everything perfectly. I think she just likes to hear me giggle when she says it wrong. Tomorrow I'm sending out our 60 Christmas cards and can't wait! I'm so excited to really soak in our family and friends and appreciate this last Christmas with just the three of us before our family expands. I can't even imagine what Christmas will be like when Bella isn't the center of attention anymore. What a rude awakening it will be for her. I hope that everyone is enjoying this season as much as I do and if not then go take a ride to look at some stellar light displays and listen to some cheesy holiday music (my station is now programmed to holiday music all the time!). It's sure to put anyone in the spirit!

Friday, December 2, 2011

Boring Appointment! :)

Sorry I haven't written in a bit.  We had another doctor's appointment on Monday and it was so crazy to see how different the ultrasounds look now that we're in the third trimester.  This whole pregnancy Eddie and I have been saying that it would be great to go to an appointment and walk out feeling like it was a "normal" appointment. No talks about ventricles size differences or alarming news or anything. Just a regular appointment about how cute our baby looks and a "see you in two weeks".  At this point we are always prepared for even a small amount of new news about what's going on.  This week was the magic week.  Ultrasound was perfect, no change in ventricle size the baby has gained weight (which is great since two weeks before they we're concerned since he was so tiny) He's about 2 weeks smaller than most babies.  I'm not worried at all though, although Bella was a nice average 7lbs 15oz when I was born I was only 5lbs 14oz. So what if he's tiny!  When the doctor said he was 2lbs 4oz I thought it sounded so big, up until now we weren't up to pounds it's weird thinking there is something growing inside of me that's a whole 2lbs!! After the ultrasound we headed to the doctor to chat with her, and again another perfect appointment. Not much to chat about other than my wonderful pregnancy heartburn and Eddie's usually chatty cathy chit chat. Sometimes I think he could spend the whole appointment chatting about himself! :) It's ok though that just means the more he can chat the less we focus on the SB. Actually come to think of it we really didn't even mention the SB and it was awesome! Fingers crossed that the rest of our appointments will go the same way.  In the next couple of weeks we'll be having our NICU consultation which will hopefully be our last consultation before the baby comes.  At 32 week (I'm 28 1/2 now) I'll start going for ultrasounds and appts every week to conduct a biophysical profile which sounds like a big deal but it's really just a scoring system to keep track of the baby. You get scored 2 points for each "normal" thing for example, heartbeat, breathing, movement etc. Luckily our little guy already shows off during ultrasounds (other than his face, we have still yet to get a good pic of his face) hes constantly moving around and beating up my belly when we're there.  He clearly doesn't like anyone touching mommy other than him. That's my momma's boy! We'll also make a tentative delivery plan. Since I'm a planner I like this part best! I'm not big on surprises.

So that was the appointment in a nutshell! I've been feeling pretty good lately other than the more frequent braxton hicks (which I've had since 18 weeks!) According to my exams it doesn't seem to be doing much other than making me uncomfortable. We looked at a great apartment the other night, it's real cheap but not in the greatest area. Although the street is very quiet and no one seems to bother it.  We're not sure what's going to happen yet, it's kinda if we get it we get it if not than not. We don't really have enough saved up for 1st, last and sec so we'll see. Either way we'll figure it out! Least of our problems, right?! Hope everyone had a great Thanksgiving!

Wednesday, November 23, 2011

Giving Thanks!

Things have been real busy around here especially between apartment hunting and early xmas shopping.  I haven't blogged much mainly because while entering my new trimester of pregnancy I'm wiped out! I'm going to make tonight's post short and sweet since I'm busy baking my pumpkin and pecan pies for tomorrow and an extra regular pecan just in case no one wants to try my Paula Deen Mystery Pecan Pie.  Tomorrow is Thanksgiving here in the states and what I like best about it (other than all the pies and football) is that it is a chance to tell those around you how thankful you are lucky enough to have them in your life.  So here are my Thank You's! I want to thank my family, friends and blog readers for all of your support. To my loving husband, thank you for putting up with my hormonal ups and downs (even when I'm not pregnant) and for your unconditional love through everything we've been through.  To my family and friends, I truly believe if we didn't have the unconditional support of all of you this journey would seem even more daunting.  As well as all of your babysitting hours so we can steal our bits of time whether it be a date night gone awry (a story for another day) or even a chance to go to an appointment without bringing Bella so we can give the doctors our full attention. So I'm giving thanks to all of you and I hope you remember what tomorrow is all about and take a moment to thank those around you that love and support you.

Side note....
Saw this today and thought it was cute! I know so not funny but sometimes you get sick of Big Bird, at least when you have to watch Sesame Street all day!

Wednesday, November 16, 2011

Reading between the lines...

So we're now heading for ultrasounds every two weeks. Where most people would complain about having to go so often, I'm super pumped.. I love getting to see my little guy so often! We have a ton of ultrasound pics we get like 7 every time we go. I'm going to have to start a photo album for just his ultrasound pics.

Speaking of doctors appointments, i know I briefly mentioned what our little guy is going through but I thought I'd go into detail for those of you who were like me in the beginning of this process who don't have any clue what this all means.

So little Eddie has Spina Bifida there are lots of different factors that goes into this diagnosis. Keep in mind I'm not a doctor this is just the information that I've gotten and understand.  Spina Bifida literally means opening in the spine. When the baby is in the first like 4 weeks of development a portion of the spine doesn't close. This can happen anywhere on the spine (Fortunately, this has happened very low on our baby's spine) The placement on the spine depends on the baby's level of physical issues. Basically the lower the better.  From what it sounds there are two types of openings. One where the spinal cord is in place with just an opening which can or cannot be covered by skin. One where the spinal cord is pulled out a bit and could be tethered. Our little guy's spinal cord is the latter and has no skin covering it, so there is just a very thin membrane covering the opening. Once the baby is born the surgeon will immediately preform surgery to untether the spinal cord and close the opening.
With the spinal cord being pulled down and/or tethered this affects the brain also.  Where the cerebellum and brain stem are pulled down.  This affects the spinal fluid circulation in the brain and causes the ventricles to expand (possibly needing shunt placements after the baby is born).  This is called Chiari II Malformation.  This is the part that is kind of the "unknown" for us at the moment. They can see and monitor the babies ventricle sizes through MRI's and ultrasounds. The trouble with the Chiari II is that we won't know what kind of affect it has until the baby is born. It could range from not needing shunts and maybe some learning disabilities to not being able to swallow/breathe on his own. 
Good news is that at the moment his ventricle size is about a 1.4 and a normal baby is a 1. This has increased though and could and probably will increase before and after he is born.

Are you overwhelmed yet? We were too at first, but we've learned that this is a "read between the lines" kind of situation. In between all that overwhelming info are all these positive tidbits of news for our little guy! Low opening, small ventricles, the fact that he is constantly boxing and kicking my stomach, perfect feet (clubbed feet comes with SB), so on and so on.. So as I update this blog after each appointment and if I stop reading the positive in between the overwhelming, please REMIND ME!! I've posted two pictures of our little guy, one is his spinal opening, I've circled the "defect" (<--- BTW I hate that term, my little guy isn't defective, he's not a battery operated toy that doesn't work.) I realize sometimes it's easier to see something to understand it. The other is a 3D pic of my adorable little guy. I know it probably just looks like a brown blob but we swear we can see so much of him and we think he already looks like Bella :)

Saturday, November 12, 2011


So yesterday evening I had the chance to speak with a wonderful woman whose son has SB and has a similar case as our little guy. It was so wonderful to hear about how great her son is doing at 12 and made me feel so much more comforted in our situation. I know that everyone will be different but to hear that her son is striving so well gave me a sense of peace. She brought up this poem/story about a unexpected trip to Holland, it captured exactly how it feels. I'm a a total type A personality and when I had Bella (my first child) everyone said "get used to letting go of some control".  I did have to give up some control in life with her but being the type A personality that I am I found ways to make things work "my way".  I'm now realizing that this time is different, I either need to change my personality type or at least learn to bend a bit. So here I am, bending... Or at least trying!

Here's the poem~

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely hings …about Holland.

Thursday, November 10, 2011

Thinking of others

I am connected on a few facebook and message boards regarding SB, giving me a chance to reach out to others with children with SB and adults with SB. On one of these sites a grandmother has been updating us all about her 4 week old grandson's progress. Her grandson has a similar diagnosis as our little guy and they have had quiet a rollercoster ride these past few weeks. In the past couple weeks they have had one after the other "crazy never heard of" events happening.  Everyday I jump on the site to see if there are any updates about him. Where others may see a doomsday I see a little boy with so much strength that even handed all of these difficult things at 4 weeks he's still fighting! It gives me so much hope for his and our little guys future, and no matter how difficult my day is I think of those parents spending all their waking hours in a NICU watching the miracle of that little boy fight. It amazes me how we treat babies so carefully yet they can be so strong. Even during some things that even us adults may not be able to physically handle. So today I ask you to keep this little guy in your thoughts and hopefully we create a sort of "butterfly effect" of love to send his way!

Friday, November 4, 2011

Little pieces of hope

 So as positive and hopeful that we are on a day to day basis, some days are more difficult than others. The mere fact of not knowing what our sweet little boy will face once he's here is the most difficult part. There are days that I get down and very sad that our little man will have a difficult road ahead of him. Or that life may not be as easy for him as it is for his sister. Today was one of those days. I was alone most of today, Bella was out and about with relatives. Not having her around sometimes makes it easier to get down since the distraction of a crazy, cheerful, funny 3 yr old isn't there. I went on facebook and saw this video about this little boy and although I myself am somewhat of an atheist I believe that you don't need to believe in God to feel the hope that comes from this story. I finished watching it thinking, you don't know what the future holds and so why get down about something before it even presents itself! I'm not saying all my bad and sad days are behind me because honestly I know that those days will come, but for today I can rest my head with a little less hopeless and a little more hope!

P.S. Grab a tissue, you're gonna need it!


Thursday, November 3, 2011

Beginning of the road!

Where do I start? Let me start with who I am and why I started this blog. I am a 28 year old mommy of one (soon to be two) and wife to an amazing and supportive husband.  When we had our daughter 3 1/2 years ago I had no idea what the world of parenthood and marriage had in store for us. As a family we have had our share of ups and downs and even some way downs, but always managed to find our way to being closer together. Thank goodness for those way downs because without them we would never be able to handle whats in store for us next. Only 5 weeks ago we were rushing off to the doctors to find out the sex of the baby, oh how excited we were! During the ultrasound we were having so much fun, joking with the tech and giggling about how the baby was boxing with my belly. She then announced that we were looking at a little baby BOY! YAY A BOY!! Eddie actually jumped out of the chair he was so excited! A few minutes later the tech got real quiet and kept measuring and looking closely. I began to get worried. The room got very quiet and then the words that came next turned the excitement in the room to an air of somberness. "I'm so sorry, I am seeing some things on the ultrasound that show me a birth defect.  I'm so sorry." Then she showed us out of the room and old us to head over to our OB's office. What the heck? That's it? Why are you so sorry? What is going on?! As we walked into the office waiting room the receptionist gave me a sad nod and told me to have a seat. (The ultrasound tech had called ahead). Then the nurse came and got me and put her arm around me and told me she was sorry and asked if I wanted some water or anything. "What the hell is going on!", I thought.  By the time the OB came into the room we were a mess, he then explained to us that our baby had what was called Spina Bifida a birth defect that affected the spine and swelling in the brain. He then asked us if we wanted to "terminate" the pregnancy? He wanted us to go talk to specialists in a few days. That was it. That was all the info we got?! 

For the next couple of days Google was not my friend! FYI, don't use Google for serious medical facts, you'll only scare yourself more!

Here comes the marathon doctor appt! Once at the Perinatologist (high risk pregnancy doc) we had another ultrasound done, met with the doctor, met with the genetic counselor and had a amnio done. About 4 hours later we left. With tons of info and even more questions. We then had appt scheduled with a neo-neurosurgeon and a child neurologist. All of these doctors again asked me if I wanted to terminate the pregnancy. By the last appt, I was getting a bit irritated with this question and barked back, "Am I missing something? I get that this is bad but please STOP ASKING ME!" This was my first hint that not everyone understands what being a mother is like.

So here we are 5 weeks later and ready for our Spina Bifida journey. I wanted to blog our road so that others going through this don't feel quiet as alone, and so that those who don't understand why we're doing this may understand. Plus, this is my selfish way of doing something cathartic. Having a way to get those feelings out, whether they be happy, sad, scared or alone. This future will be hard, but we have weathered some pretty difficult storms as a family and if we can do that we can do this! Thank goodness for my amazing and hardworking husband, my hysterical daughter, and my supportive family and friends! Bringing this beautiful little boy into the world will make anything worth it!