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 :)

1 comment:

Sarah said...

Yay! I'm so glad you decided to start blogging again. I love being able to stay up to date with everything... new baby, the boys, all of it. I read Celina's blog regularly too. hehe Plus, I'm sure it will be a therapeutic thing for you as well.
Continuing to think/hope/pray for you guys often. You are so strong!
Can't wait to read more and see updates on the boys too! Miss you guys.