Reflecting on our Year

I would of never thought when 2011 started that it would end up this way. We started talking about if we wanted to have another baby or be done. It seems like we talked about it everyday. Sam said he could go either way. I wanted another baby, but thought things might be easier if we were done. We had been having babies since we got married and now they were finally sleeping through the night and we were actually able to go on a vacation without them and they did great without us. We had a trip to New York that we were starting to plan. I had stopped nursing Finn in January so I was gaining some independence also.

He kind of left the decision up to me. The day we 100% decided he would be "fixed", we were driving home from Seattle and I was already a few weeks pregnant and didn't know it. I will admit it was hard at first. We were excited but a little shocked. Ok, A LOT shocked. I was so sick the entire summer. By time September came around I think things were finally settling in. Then, by the end of the month we learned that we were having a daughter. How exciting is that? We had about 24 hours between finding that out and then finding out something was "wrong".

The month of October was doctor appointments and ultrasounds every week. Paperwork, blood work, interviews with genetic counselors. I think I spent the entire month crying myself to sleep every night. By November we were SO informed and ready. The doctor appointments took a back seat to us enjoying our kids and starting to prepare for our daughter to be born.

December has been an emotional month now that our due date is getting closer. The nursery is painted, her clothes are in the closet. I am going in every 2 weeks for checkups and ultrasounds. I find myself crying more than I had been. I feel so stressed out every minute of the day. I try to run the scenario over and over again in my head of her being born and her and Sam leaving to go have her first surgery and me laying in a hospital bed in tears.

Ever since I became a mother I have become this crazy planner and organizer... almost obsessively. I have a million lists going. What to pack for the hospital, for the boys, what paperwork I need to fill out. Some insurance stuff I need to take care of. Laundry, dishes, errands, and appointments. Making sure his work schedule works around the things I need to do. Sam is on me everyday to slow down and relax. He has been great about stepping in and helping me whenever I need it but it's hard for me to give up control. I feel totally incapable of slowing down. On top of that I don't want the boys to see me crumble so I try to stay strong for them.

I spend so much of my free time doing research. I read everything I can about Spina Bifida, hydrocephalus, Chiari Malformation, club feet, bladder and bowel function and surgeries, latex allergies, ways to improve mobility. It's overwhelming at times but I like to know as much as possible.

So as we say goodbye to 2011 and welcome in 2012 I am trying with every ounce humanly possible that I can stay positive. This year our daughter will be born, Roman will start preschool, and lots of good things will happen. We will feel the lowest of the lows and highest of the highs. I am hoping to come out of this a stronger person and a better wife and mother.

I thought I would write a quick update on whats going on before I forget it all! First of all, I "passed" my additional gestational diabetes test! Thank goodness. I went in for Ultrasound #7 yesterday morning. The baby was looking good! It was hard to see a lot because she is getting so big now she is taking up all the space! She is about 3 pounds right now. It's also hard to get a good look and see how clubbed her feet are because at this gestational age, babies are in there with their feet crossed at the ankles. The fluid is continuing to build up and her ventricle size measured 16mm. They were 14mm at our last appointment. This is a very gradual increase. Which is good because if there was a huge jump, that could be a reason to deliver early and she needs to stay in there as long as she can!

I also had an appointment with my Bellingham OB. She won't be involved with the delivery but I see her for my prenatal care. My blood pressure, baby heartbeat, and tummy size was all good. I go back on the 30th for another prenatal appointment and Ultrasound on January 5th.

My parents are in town for the weekend since our family and my brother and Erin won't be able to make it down for Christmas. We are going to see Santa today then doing our little "Christmas" festivities tonight.

Bobbi and I got Stellas room painted the other day. The color is so amazing! It's a bright lavender color then all the trim is white. It's looks great with the color of the wood floors and the white furniture that is in there. Now just making the transition for Finn to go into a toddler bed and for him to give Stella is crib. I'm kinda dreading this because he sleeps great in his crib and doesn't even try to get out of it. I'm thinking by time we are back from Seattle he will be ready. Sam and his friend Russell are going to eventually make bunk beds for the boys.

I hope everyone is enjoying the Christmas season! :)

Anymore surprises?

We are officially into our third trimester now. It's unreal how fast these last couple of months have gone. Next Friday I go in for another ultrasound (#7) to check on Stellas ventricle size. They are monitoring the fluid on her brain. Luckily, this ultrasound and the one 2 weeks after that are done at my doctors office in Bellingham. No more trips to Seattle until mid January to see our "team" down there and schedule our c-section.

Of course, more complications have rose up. My routine gestational diabetes test showed that I may be diabetic. When the nurse called, I really wasn't too upset. I have dealt with so much "bad" news and complications that I am just rolling with the punches. Yesterday I did another test. I fasted for almost 20 hours and had my blood drawn 4 times over a 3 hour period. I am hoping the doctor calls tomorrow with my results. I did a lot of research and feel like I do have many of the symptoms but a lot of the symptoms are common in a healthy pregnancy.

Everyday I still have my ups and downs. I have a horrible fear of going into premature labor. If I did go into labor early the doctors would try to stop it and if it didn't would be flown to Seattle, That's too crazy! I am trying to take it easy but I still have 2 little ones to care for a a house to take care of. I can't believe I worked until 37 weeks with Roman! I am so tired and sick all the time, I'm thankful I have the opportunity to rest throughout the day.

Stella is kicking all the time. I love every time I feel her move. I used to get annoyed with it with my past pregnancies, especially when I was ready to go to bed. This time, every time she moves it reminds me that she is alive and at least for now is safe in my tummy.

I finally went and saw the new Twilight movie. I am a pretty hardcore fan of the books and movies. No I didn't wait outside in line for hours to see the midnight showing, but just ask my husband.... He gets sick of me talking about it! And yes my first girl name was Bella but Sam shot that down fast! It was nice to get our for a couple hours with my best friend and just relax. I know people rag on Twilight but it really means something to me, deep down. And seeing Bellas love for her unborn baby despite the odds, reflect some of what I'm feeling. (Except I am not carrying a half human and half vampire kid :)

We are gonna paint Stellas nursery this week. She will probably do most of the painting while I sit and watch! I have 2 beautiful shades of purple picked out. I am going for a clean and simple look. White crib and bedding with purple accents like the wall color and rug.

Other than all of that, Sam and the boys are doing great. Roman can now write and spell his name. I almost cried the first time he did it. Since turning 4 he has changed so much. Finn is doing good too. His speech is incredible and he can speak full sentences.

Finn: "Roro look, it's Cat in the Hat!"

Roman: "No, I am busy playing DS."

Finn: "No Roro look!! It's Cat in the Hat book!!"

Roman: "Ohhh cool brother!"


I put a new hoodie on Finn the other day and Sam said "Hey Finn, cool hoodie!" Finn replied "My Grandma and Grandpa gave it to me!!"

You Are What You Love.

Dear Stella,

I have been meaning to write to you for awhile now. I feel like you already know what I'm thinking and how I am feeling. You are (literally) right next to my heart 24 hours a day. I will admit to you that I am scared, but I'm sure you already know that. There is this part of me that feels like I cannot do this. It scares me to feel this way. I have such extreme "mommy guilt". If I need a few hours away from your brothers or don't have the energy to read them a bedtime story at night, that guilt eats away at me. Your daddy is always reassuring me that I need a break sometimes and I have to chill out. I know I can physically go through the delivery and taking care of you while you are recovering but emotionally I want to crumble when I think of you in that hospital bed. I have guilt that I did something to cause this to happen to you. All the doctors reassure me that it just happens, we were the 1 in 1000 that it happened to. More like YOU were the 1 in 1000 it happened to.

I am scared for the pain you will endure after you are born. The surgeries, needles, and poking and prodding you will endure. If I could I would do all of it in your place. You should be in my arms but you will be in a hospital bed. I promise you to stay by your side as much as I can, I know your Daddy feels the same way.

I feel like a part of his heart is broken for you right now. He doesn't like to talk about it. I think he feels sorry for me and wants to support me so he doesn't want me know how much he is hurting. We try to explain things to your brothers but they are blissfully unaware of whats going on. Maybe that's how it should be. Roman is especially afraid of hospitals and doctors so I think if I went into too much detail, he would be frightened. He is excited for you to be born. He likes to go into your nursery and look at your stuff. Finn still kisses my belly and hugs it every night and when we went shopping he kept grabbing girls clothes and saying "For baby sissy" They love you so much and I know you hear them singing their good night song to you every night. "Good night Stella... good night Stella... goodnight Stella it's time to go to sleep"

The out pour of love and support has been amazing. You are SO loved and you aren't even born yet. Tomorrow we enter into the third trimester. With the busyness of Christmas, New Years, and Daddys birthday, these 10 weeks are going to fly by. I'm sorry in advance that I won't be able to hold you after you are born. I will do everything I can to take care of myself and be out of the hospital to come see you. Your Daddy will be there with you as you go to Childrens Hospital and he will be there during your first surgery.

I have so much else to say but I will save it for another time. I promise to write to you often so when you are older you can look back at the journey our family traveled to have you in our lives.

I love you,

Mommy

I will start off with alot of the things that have been going on in our lives. Finn turned 2! I cannot believe he is already 2. In some ways it just seems like he has always been here but I can still remember being pregnant with him and him being a tiny newborn! We celebrated with lots of presents and a great dinner. I didn't have the energy to put together a birthday party like Romans, but at 2, kids are pretty happy with however you celebrate!

We haven't had many appointments in the last 3 weeks. It's been a nice break. We started buying baby clothes and moved Finn into Romans room. We plan on starting her nursery soon, as soon as I can find a perfect purple paint! The day I cleaned out the room I became very upset and anxious. I know we are supposed to be doing all the normal preparations you do when you are expecting but it just really upset me the thought of her not coming home.

On Wednesday, Sam and I drove down to Seattle for a day full of appointments. First we went to Children's Hospital for a tour. Everything was going great and we were chatting with the genetic counselor. She wanted to show us the ICU and I was totally fine with that. We took about 3 steps in and I almost fell to my knees in tears. I just couldn't be in there. Just being in there was so surreal and knowing our daughter would be in there was overwhelming. We quickly left and after a few moments I was able to finish the tour. We saw where she will do most of her recovery, after ICU. Each patient gets there own room and bathroom, which is nice. We saw different playrooms and resource centers. After the tour, Sam and I went and had lunch and did some Christmas shopping for the boys.

At 2pm, we went to UWMC to their Maternal Infant Care Clinic. First, we had another ultrasound. This took over an hour and I was about to fall asleep during it. The main areas they wanted to see were her ventricles, to see if the fluid on the brain had increased. They had only increased a few millimeters. This sounds good but she will still most likely need a shunt. Next, they wanted to see her growth. She is in the 65th percentile, which is perfect. Next, they wanted to see if her feet were clubbed. At our last ultrasound they weren't clubbed but I read online that can change. Unfortunately, they think they are now slightly turned in. This means additional surgeries on her feet and casts/braces while she is little. But thankfully these surgeries and therapies work and her feet should be fine as she grows older.

We met with a neonatologist. We just talked about pretty much everything we already knew. He said "If I had a grandchild with this, this is the scenario I would want. Her chances of walking are good and with good medical care and therapies, she has the chance for a high quality of life." This is all fine and dandy to hear but I'm not sure how it makes me feel. She still will have many surgeries which have side effects and until she is born, we just don't know. Obviously I am hopeful and know she is gonna be fine but I'm still scared.

We met with a social worker who talked to us about Ronald McDonald house. The place sounds great and we are thankful it's within walking distance of the Childrens. They mentioned we might need to be in there up to 4 weeks. If that happens, after the first 2 weeks the boys will come back from Longview and stay with us. Praying her recovery goes good and we are back home as soon as possible.

Finally we met with a high risk OB. We talked more about my pregnancy and c-section. I'm happy they are going to schedule the c-section at 38 weeks and not 39. Finn was born at 38 weeks and they do not want me to go into labor here so at 38 weeks I will go down, do an amnio, and pray her lungs are ready. There is so much planning going into this and I really hope she will be ready then. With Sam taking time off of work and my parents doing the same to come up and take the boys, I'm praying everything falls into place.

I'm sure I am forgetting a million things we learned that day but we were on information overload! It was also the day before Thanksgiving and we were eager to get home to the boys and the weather was horrible! I started seeing my Bellingham OB every 2 weeks now. We will go back to Seattle the 2nd to last week of January and schedule to c-section and do a tour of their Labor & Delivery. We are also meeting my parents that day to have them take Buckley home with them. It's honestly so sad for me to think about but it makes our "birth day" easier knowing he is there. He will come home with us when we get Stella home from the hospital.

We had a great Thanksgiving at home, just the 4 of us. I got tons of Christmas shopping done today for the boys and all of our Christmas lights for Sam to put up! I think we are getting our tree in a few days, which I am so excited for. I'm frustrated with having horrible back pain all day long. All I can do is pretty much take Tylenol, use heat, and stretch. I had this with the boys but not till the very end of my pregnancies with them. She's just chillin' down in the pelvic bone area pushing on every nerve she can. I try to be a super active momma and keep my kids busy all day but now I have to take breaks every 20-30 minutes to rest.

So if she does come at 38 weeks, she will be born on February 6th, my 27th birthday. I remember when Sam and I celebrated my 20th birthday! I think this will be by far my best birthday with the birth of our 3rd (and final) child. I hope and pray everyday that she will make it through all that she is given and be the light of our lives

Just like autumn leaves, we're in for change

Today has been a surprising emotional day. It's been 2 weeks since our last appointment. We left Children's Hospital that day really hopeful and positive. The last couple of weeks we have really accepted everything and focused a lot on the boys and making Halloween special for them.

Today when I checked the mail I became overwhelmed. First of all we got the notes from our visit with the doctor at Children's. He will be one of the doctors caring for Stella after she is born. The notes were great. Very detailed. They pretty much went over everything we talked about the whole hour we were there. There was nothing in the notes that was surprising or that I was taken back by. I think just seeing HER diagnosis, written out like that, hit me hard. I read all the time other blogs and websites where mothers and fathers write their diagnosis/experiences. It really helps me. There are other parents out there, getting the news the same time we did. Also, seeing families who have had their children and now they are thriving is inspirational.

I am once again back to that scared place. Not as much about the long term obstacles but just making it through the pregnancy and c-section. I worry endlessly about my child, who at a few hours old, will be under anesthesia and undergoing a surgery that can take up to half a day. Then, after that, endearing brain surgery.

I am trying to learn through this process. I have to learn to give up control. Even leaving my kids for the day to go to a doctor appointment is huge for me. I am such a control freak when it comes to my kids. Now knowing I will not be taking care of my newborn is not settling well with me. I know she will be in amazing hands but not being there at first, I feel right now, is gonna kill me. I know this is what has to happen and I am hoping with time and lots of prayer, I will get to a good place with this before the delivery.

Next, I opened a bunch of new doctors bills. I am trying not to think much about the financial aspect of all of this. We would pay anything and do anything for our kids and especially when it comes to their health. It's just overwhelming seeing the bills. We are blessed that Sam has great benefits through his job and that we have access to these amazing doctors.

I love the band TV on The Radio. They have this amazing song "Province" that I listen to on repeat 10 times a day. It also has back up vocals by David Bowie. It's pretty perfect. Here is my favorite verse of the song. I've loved this song for years but just recently realized how I think this song was written for us.

Hold your heart courageously
As we walk into this dark place
Stand steadfast erect and see
That love is the province of the brave

Anyways, for tonight I am just sad. I am sure I will wake up in the morning back to the usual optimistic, hopeful self I try to be. I think I need to remind myself that it's ok to cry. I think we all look to the future and have a plan when that plan is no longer an option, you have to grieve that loss. We will still be the same happy, normal family but with a new normal. We are gonna have a daughter and that is pretty flippin' exciting.

Romans Birthday Week

After a long and emotional week, we had a lot to celebrate. Roman turned 4! On his birthday we opened gifts and had his favorite food (enchiladas, apple juice and chocolate ice cream). Saturday morning, Sam and the boys went to to Ferndale Comic-Con. The little boys dressed up in their Halloween costumes. They had so much fun! When they got back, we had his birthday party. A lot of delicious food and family/friend time. I think Finn thought it was his birthday too! He loved every gift Roman got!

It was nice to focus our energy on the boys. I feel like I am going over the top on things, to overcompensate for the big changes that are about to happen. I pressure myself to make everything perfect and do everything right for them. I have always done that, but way more ever since the diagnosis for baby Stella. I never for one moment want them to feel less than special. I already have all of our Christmas plans made, even down to what the tree and house lights will look like! I also think it helps take some of the fear and pain away that I feel every moment.

There is always this special place in your heart for your firstborn. Roman made Sam and I parents. He added this new dimension to our lives and marriage when he was born. From the moment he was born, Sam and I have had this unspoken pact that our children would become the most important thing in our lives and we live our lives for them. The day I found I was pregnant, Sam had registered to attend WWU again. We were had only been married for 4 months! I was 22 when he was born. Sam and I had only been married one year. Looking back I realize how young I was when he was born. Yet somehow instantly, the moment he was born, he became first. I also didn't realize till he was born that my purpose in life was to be a mother and wife.

Now, pregnant with our third child, I see more clearly the purpose of my life. Making sure not only Stella, but Roman and Phineas have wonderful lives is what is important. Spending hours laughing with Sam or reading to my kids is whats important. Teaching them to be honest and compassionate and loving people is whats important. Pouring my heart into my marriage, which is the foundation for our home.

October has become this rollar coaster of pure heartache, joy & love & celebration, and getting a glimpse of what our lives will become in a few short months. I hold my husband and kids a little close these days, knowing how very blessed I am to be Sams wife and Roman, Phineas, & Stellas mom.

Big Updates

I cannot believe it. I made it thought 2 major doctor appointments today without any tears! I stayed calm and Sam and I asked about a million questions. We had a great first experience at Childrens Hospital.

I will start with out first appointment. We started off with an ultrasound. The did a full scan of every part of the baby. After that we met with a new doctor. We really liked her and the genetic counselor working with her. She kinda reconfirmed things we already knew. High AFP levels, an obvious opening on the spine, and no genetic problems found. I was pretty much holding my breathe, waiting to hear what section the opening was on. This number gives you a more clear outlook on the babys functions (or loss of). She told us the opening was on the L5. This is good news. It's on the very lower part of the spine. We could even see it in the ultrasound. A lot of kids born with an L5 opening go on to walk unassisted, or sometimes with the use of braces or crutches. She may also have a slight limp. She cannot 100% guarantee any outcome but she said that this is a very good number. Also, things like bladder/bowel control will most likely be affected but the extent is not known until she is born.

We also are for sure delivering in Seattle at University of WA by c-section. They would like it to be at 39 weeks but Finn was born at 38 so they might do it then but do an amino to make sure her lungs are 100% developed. They don't want me to go into labor on my own. After she is born they will dress the opening and Sam and I will see her for a bit. Then she will be transported to Childrens by ambulance. If I'm recovering well, Sam plans on riding with her and staying with her as long as he can then coming back and staying with me at the hospital that night. If my c-section recovery is going good, I may be discharged the following night.

Before she is 24 hours old, they will do surgery to close the opening. The next pediatric doctor we met with explained a lot what happens after shes born. The surgery can take up to half a day. After that surgery, within the next couple of days, she will have a shunt put in. It drains excess spinal fluid to the abdomen, which it then is absorbed into the organs. It only takes about a half hour to do the surgery for that. When she is born she will be catheterized and we will be doing it for awhile when shes out of the hospital to see her bladder function. She may outgrow the catheter or may need it forever. There are lots of different options for the management the bodily functions. But a lot of those will not a a big issue till potty training time.

So we are looking at about 2 weeks in Seattle. If her surgeries go well and there is no infection or other issues, we will be able to bring her home by the end of February. We plan on staying at the Ronald McDonald House and spending a lot of time at Childrens, with her. We would also like to be able to see friends and family in the area also.

We will be having monthly ultrasounds to watch the fluid in the brain. Today it didn't look like the fluid had increased but there is still time for it to happen. If the fluid got out of control, I may have to deliver early, but they were very adamant that they didn't want to add prematurity on top of the other problems. We go back there the day before Thanksgiving to have a tour of the hospital, meet with the nurses and surgical staff and schedule the operations.

So I think today was good. Sam and I are feeling really good right now. I know I will feel different after I've given birth and our child if off having surgery. For now we don't feel sorry for ourselves or question "Why us?". We think we were chosen to be Stella Joy's mommy and daddy. Having her in our lives will make us stronger, more compassiante, and all around better people. We hope the same for Roman and Finn. We know she will bring such love to our lives and the lives of our friends and family. We are so lucky to have good health insurance and the best doctors to take care of her. I have hope and faith and know the Lord is watching over us.

Late night ramblings of a pregnant women

Our genetic counselor called today. I missed the call but she left us a voicemail. The results of our amnio are back. They were pretty much the same results of the rapid screening test. There is definitely a neural tube defect. Spinal fluid or tissue is leaking into the amniotic fluid. But the good news (I guess) is that it's for sure not a genetic issue. We were just the 1 in 1000 that randomly has a baby that develops Spina Bifida.

I have been kinda depressed all day. I guess more like anxious, but the anxiety makes me sad. Makes me feel like I can't be 100% mom and wife I can be. Luckily, Sam has been home the last 2 days. He has me on "light duty" around the house so I sat and watched him clean! He was also great and when I had morning sickness and was laying in the bathtub at 6:30 this morning, he got up with the boys.

I think I have been trying so hard to be so positive lately that today it kinda wore off. We have been researching Childrens Hospital, The Ronald McDonald house, spinal surgery, shunt surgery, aftercare of a newborn with SB, catheters, supplemental insurance.... ect. Today it kind of hit me why we are doing this. Thoughts of not holding her after she is born and her being in the NICU for days is driving me crazy today. Also, having a C-section is the craziest thing to me. I'm trying to wrap my head around all of this. Luckily, we still have awhile to plan and prepare and deal with everything.

Even when I am scared and crying and feeling totally out of control. I try to think that we are going to have a new baby. Tiny little pajamas, little hats and socks. That smell of my milk on their sweet breath. I can still remember it with the boys and I am excited to go through it again.

I am nervous for Tuesday when we go to Childrens because I feel like they are going to tell us where the defect in the spine is and we will know what "limitations" she will have. I need this though. I need more of my questions answered. I have a list written out already. I will let everyone know how it goes. Thanks again for all the prayers and messages of positivity. It really does help and eveyones words of encouragement are helping to keep us going.

"Fix You"

Here is picture of our daughter from our first ultrasound. Now you can put a face (skeleton face for right now) to what's going on. I've been too sad to look at the pictures but I was looking at them today and she is totally beautiful and has the exact same nose as Roman and Finn.


Today we got a small update from our genetic counselor. I'm horrible at relaying this information on but I will try to sum it up. The rapid screening test shows the they don't think it's anything bigger causing the spina bifida. It's not as accurate as the chromosonal culture but those results take 8-10 days. Also, one of the numbers they were looking at shows that the spinal cord may not be open which means no spinal surgery after birth. Which all the surgery does is close the hole not repair any defect. I should be happy but my first blood test showed I had only a 1 in 400 chance of the baby having a neural tube defect. Also, my first ultrasound diagnosis was wrong. I am such a "prepare for the worst" type person. I will just have to wait and see when she is born.

I am listening to Coldplays "Fix You" on repeat lately. It's kinda my anthem to our daughter.

When you try your best but you don't succeed
When you get what you want but not what you need
When you feel so tired but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I

Tears stream down your face
I promise you I will learn from my mistakes
Tears stream down your face

And I
Lights will guide you home
And ignite your bones And I will try to fix you


We have another ultrasound (#4) scheduled for next Tuesday at Childrens Hospital and a consult with the pediatric neurosurgeon afterwards.

It's been almost 2 years since an update!

I have finally decided to check back into the world of blogging. One, because we have so many important people in our lives and it's hard to call everyone, everyday to keep them updated. Two, I enjoy looking back at pictures and stories about our kids.

Roman will be 4 in a few weeks. He is such an awesome kid! He is funny and always wants to make you laugh. He asks questions all day long. "Why does Ferndale have trees and Seattle have buildings?" "Why are the angry birds angry?" He loves Batman and most superheroes and playing with his brother.

Phineas will be 2 next month. He is going from baby to toddler so fast! He talks a lot. When Roman leaves the room he says "Ro Ro at?" He is super active and pretty independant. He loves to be outside and being silly.

We are pregnant with a girl! She is due 2/20/12. We were in shock to hear "It's a girl!"

As most of you know we've been getting some not so happy news the last few weeks. Here is the last couple weeks, summed up for you guys.

On Sept. 26th we went in for a routine ultrasound. We mostly wanted to find out the babys gender. This was our first ultrasound during this pregnancy so it was exciting to see our baby. We were on cloud 9 that day, knowing we were having a little girl! My midwife called the next day. I knew something was wrong because she had told me she wouldn't call me unless there was a problem seen on the ultrasound. She said the ultrasound showed Chiari Malformation Type 1. Ok, not gonna lie we had never heard of this. Pretty much means there is extra fluid on the brain. I went in for a quad screening, blood test to check for any genetic markers for a neural tube defect.

The following Monday (Oct 3) we went to Everett to a clinic for another ultrasound, meeting with a genetic counseler, and a doctor. They were looking for any problems with the spinal cord that could be causing the fluid buildup on the brain. The baby was in a funny position and the couldn't see the lower back. They did however, say it didn't look like Chiari Malformation but a Neural Tube Defect. This was devestating. The doctor had to give us all the information and worst case senerios. She may never walk, be able to control her bowels or bladder, and ender surgeries. I'm not lying I cried the rest of the day.

On Thursday (Oct 6) we went back to Everett for an amniocentesis. Guided by an ultrasound, the inserted a 5 inch needed into my stomach and removed 4 tbsp. of amniotic fluid. I can't remember all of the things are are testing for but they are looking to see if it's a chromosonal abnormality. There is a 1 in 400 chance you can lose your baby after this procedure. (Keeping our fingers crossed for the best)

When they did the ultrasound they 100% found a bulge on the lower part of the spine. The lower the better but there is still a chance of paralysis and no control of bowels/bladder. To use a term that is not myelomeningocele (which I cannot pronounce), our baby has spina bifida. There is an opening in the spine. She will most likely need surgery right after birth. The surgery doesn't "fix" any problems but you can't have spinal fluid leaking out. Also, she will need a shunt put in her head to drain extra fluid. The fluid drains in the abdomen. After the amnio results are in, we head to Childrens Hospital in Seattle to meet with a specialist in neural tube defects. The doctors and nurses in Everett say really amazing things about him.

Here we are (Oct 8) I am recovering from my amnio. Still sore and crampy but things are going ok. I haven't cried today! You can only cry so much, right? I have to amazing children to take care of and crying all day won't help anything. Yesterday was our wedding anniversary and we spent the day doing fun stuff with our kids. Sam is so strong and positive, it really wears off on me. :)

I had to switch from my midwife (no water birth for this baby) and switch to an OBGYN. We are looking at possibly delivering in Seattle, if for sure the baby needs surgery after birth. I am sure there are things I am forgetting but this is as much as I can remember for now. I thought this was better than emailing everyone on Facebook. I can't thank you all enough for the inspiring, uplifting emails everything sent me. I tell Sam about them, every time I get one. I also found a website with other mothers who are either pregnant with a diagnosis similer to ours or a child with Spina Bifida. I think this will help my spirits reading these stories of families in our similar situation.

Here is a website that has all the "facts" on it. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002525/

I am trying not to 'google' too much because the internet is a scary place! I think after our appt at Childrens we will be armed with much more information.

Thank you everyone who took the time to read this. I will keep this updated with not only the pregnancy, but with pictures of the boys :)