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!