Monday, October 24, 2011

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.

Tuesday, October 18, 2011

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.

Thursday, October 13, 2011

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.

Monday, October 10, 2011

"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.

Saturday, October 8, 2011

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.

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 :)