Thursday, March 28, 2013

Being Tested

I am being tested and I am not a fan, repeat, NOT a fan! I guess the good news had to stop at some point, right??

Today I had my (now) weekly ultrasound and non-stress test (NST).  What I thought was going to be no big deal ended up putting me in a completely foul mood.

It all started when we get to the doctor's office and the stupid parking lot is full and we had to park 2 floors under where it's all dark and dingy. I knew I was going to be annoyed from then on out - either that or I was already in a negative mood - not sure.

So we park, go up to the 4th floor, check in RIGHT ON TIME and then WAIT for 30 minutes.  Last I checked my appointment was at 10:00 AM not 10:30. It's not like I was seeing the doctor today so I could convince myself to be calm and patient "because some day he may be late because of me" - No, we didn't need to see him. I simply needed to get my 2 tests and leave. So we waited, and waited and finally we get called back.

I got a GOOD tech this time - not the same ole crabby lady that I have gotten the past 2 times.  She had a student with her to observe the ultrasound - not sure I was the best patient for that becuase I ask literally a million questions - but nonetheless, off we went...30 minutes after my scheduled appointment.

She's still a girl - that's about the only good news I got.

Where do I start???

I guess I will start at the ventricles.  All along E's ventricles have been stable at barely over 1.  1 is the limit to be considered "normal" so any tiny measurement over 1 means NOT GOOD. All along the doctor has predicted that since her ventricles have been stable this whole entire time he doesn't expect them to get bigger and that if they did start getting to 2 or near 2 we would need to re-evaluate. Well guess what folks? We are at 2 and 1.85 now. Seriously, what in the world is going on??? So frustrated. This means less room for the fluid to drain off the brain, increased risk for everything under the sun and more than likely will need the brain surgery to implant a shunt after birth. None of this was on our radar before today because everything has been stable to this point. 

Moving on - next we measured her tummy and bones and all of that and E is still measuring quite small for her gestational age. She should be around 4 1/2 pounds and she is just over 3.  While most women would praise Jesus for a small baby, I need her to be fat so she can tolerate surgery better! 

Then we got to her spine.  Again, the past few doctors appointments we have been able to get a good measurement on the opening in her back. To this point it has been right at 1cm, maybe a little over and the doctor said it would probably grow a little bit just due to her getting bigger but it shouldn't be any larger than an inch at birth. Well guess what again? It is already an inch. Today it measured right at 3cm. Triple what it has been all this time. Yes her bones all still look good but the opening is getting bigger and bigger and this time it got huge. Very discouraging.

We learn all this information and we don't even see the doctor until next week. Thanks for dropping a huge bomb on me and then I don't even get to talk to the medical professional about it.

I have 7 1/2 weeks until my scheduled c-section and if things are going to grow and get this out of control now, what on earth will we be talking about in another few weeks???

Then I have to go get my NST. This is just to make sure that E's heart is doing what it's supposed to be doing and my contractions aren't too strong or frequent.

Takes forever to get the little monitors positioned correctly, but eventually they did get them on.  We sit there for 20 minutes, supposed to be "relaxing" - um hey, word of advice if you want your patients to relax maybe you should do the NST before the ultrasound comes and drops a load of crap on them, just sayin'-

Sit there, her heart does fine, I have contractions but none that are that big, so nothing to worry about.  

Then we get to leave.  I have another ultraound, NST and some other test to measure the amniotic fluid next Friday and meet with the doctor at that appointment. At least I will be able to get some sort of insight after speaking with the doctor - hopefully. 

I have my 3 hour glucose test this Saturday. I was right on the border of failing the 1 hour so they are making me do the 3 hour. I am not a happy camper about this.

Hopefully I get out of my funk real soon because when momma ain't happy, no one is happy :/

Here's our sleepy girl...

Friday, March 8, 2013

Appointments Appointments! (I wish every title could be Praise Jesus!)

Yesterday were my appointments at the Fetal Care Institute (FCI) at Cardinal Glennon Children's Hospital.  This was only my second time to their office, but I really love all the people there. Our nurse, Jenny, is beyond awesome - kind, gentle, patient - she just gets it. She understands we have a million questions and if she doesn't know the answer she will find out for me from someone who does!

(Joe's mom is still in the hospital so we didn't have anyone to watch him, so he stayed home with Gavin and my mom was able to take a few hours off work to go with me)

While at FCI I knew we were going to do a fetal echocardiogram.  This is standard procedure for any baby diagnosed in-utero with SB. They just want to rule out any other abnormalities there could be. I wasn't nervous for some reason. I just knew her heart would be fine.  And it was.  We went to the Heart Center at Cardinal Glennon and they got on the ultrasound machine, took probably 100 pictures of Evie's heart and then the doctor came in and reviewed them.  We couldn't hear everything the nurse and doctor were talking about but we did hear things like "this is perfect" and "come look at this image, this is exactly what this should look like". Glad my little wiggle worm proved to be half-way cooperative and allow them to get some pretty great images! At one point during the scan the nurse had to stop because Evie was kicking the probe. The nurse would get it positioned just right and then she would start kicking directly under it making the images blurry. It was pretty entertaining because it seems like Evie knows exactly when and where they are trying to look and she is saying "it's all good in here, leave me alone!"

So that was that, 45 minutes of watching the heart beat - not even getting to hear it much - and never really seeing any other portion of her sweet little body. It was worth it to hear the words "everything looks just like it should". We haven't heard that this entire pregnancy - until yesterday!

We then met with Dr. Vlastos.  He is the head of the OB portion of the SB clinic at Cardinal Glennon. He also works in the same practice as my OB (Dr. Nguyen - pronounced Wynn - lol, makes us all laugh every time. He speaks very good English, on the phone you would probably think he was just a normal American like me! haha again, "normal" to be taken with a grain of salt I guess!). It was our first time meeting Dr. Vlastos - we have heard nothing but great things about him from some very dear friends of ours who had seen him in the past with a more severe SB case.  We were very excited to meet him!

Dr. Vlastos came in with a latptop - I knew that meant good things were about to happen and they did! The man came in with a stinking powerpoint presentation on all the different forms of Spina Bifida, with images (that a normal person could understand) and explanations.  A man after my mom and I's hearts! So he first asked us what questions I had - he didn't know what he was asking, apparently! I have very specific questions, I always do. I do my own research and want to know how that applies to our specific case. After he learned that I knew more than the "average Joe" knew about SB he decided it would be better to start with the powerpoint. 

He explained to us the 3 main types of SB. Occulta - most people don't even know they have this type of SB until some sort of imaging is done on their spine later in life (perhaps after a car accident or something). This type of SB has no outer effects, no issues really present themselves in life.  Then there is Meningocele. This is the most rare type of SB. The spinal cord is completely formed and lays protected by the spinal column. While the bones aren't completely formed and fused at the top (imagine a circle with an opening at the top, like a "U") the spinal cord lays like it should between the "U" and is protected.  In most cases this type of SB has a skin layer or cyst covering the area.  This type of SB has minimal nerve damage and minimal physical affects. This type may still require some bowel/bladder help.  Then there is Myleomeningocele. This is when the spinal column is never fully formed/fused but the spinal cord is on the outside of the column rather than laying protected inside the column. The nerves float around and sort of buckle up and then go back down.  This type of SB is the most severe and most common.  This type also usually has a cyst or covering of some type. 

So the doctor is trying to explain these three types to me and I am so bad at interrupting, but he just kept on going. He said that Evie's spinal cord is laying where it should - it is NOT outside the spinal column and does NOT buckle.  The only thing keeping her back from a full blown diagnosis of Meningocele is that there is no cyst.  You would be able to see the cyst or bubble like growth on ultrasound and you do not.  I asked if they could just not be seeing the nerves coming out and that she could really have myleo and he said no.  The ultrasound and fetal MRI I had would have revealed the nerves coming out. So she is in between Meningocele and well - I don't know what. She just isn't a cookie cutter case - which is good - our girl is unique :)

We talked for a while about all sorts of things, her brain looks good, ventricles aren't really an issue. Yes, one is slightly larger than 1cm - it is 1.1cm - go pick up a ruler and try to measure 1milimeter, because that's what we are talking here!

Then came the best sentence of the day from the doctor "If I had to have Spina Bifida, had no other choice, I would pick your babe's case."  He says she will have a wonderful story to tell when she gets older because the probability of someone knowing from the outside that she has SB is very small!  Can you believe it?!?!?! Mom and I were just kind of stopped in our tracks after he said that. He then asked if we had any more questions and at that point we were like, nope, not going to push it!

So I go back to FCI on April 18th. At that appointment I will meet with Dr. Vlastos again and Dr. Elbaba (the pediatric neurosurgeon) that will be closing Evie's back and watching to see if she needs shunt placement after birth.  I will be around 36 weeks pregnant at that appointment and that will be my very last appointment at FCI. I can't believe how fast this is all going - appointment is NEXT MONTH! Holy cow!!!


Today I went to see my doctor, Dr. Nguyen. It was for my normal ultrasound and check-up. I also had to have the glucose test ( I thought I was going to be able to sneak out of this pregnancy without since we are looking at so many other things, but they remembered!).  We got the same crappy tech we had the last time, so we knew not to ask any questions during the ultrasound because she wouldn't answer them anyways. We just watched everything she was measuring and tried to see for ourselves so we could ask the doctor!

Ultrasound was good, Evie's heart was good, and we got a few 3d pictures of her - that's my favorite part!

We then met with Dr. Nguyen.  He came in and said the ventricles were pretty much the same. They were measuring slightly larger but that all depends on the tech and how they measure. The "defect" in her back was about the same as well, maybe a tiny bit bigger, but again, depends on where and how the tech measures each time.  The fluid around her brain is the same, everything is pretty much the same, which is pretty good news!

We did, however, get 1 piece of news that has changed DRAMATICALLY since any of our other appointments. (remember, when all of this first got diagnosed they thought E had Myelo with a completely open spine. The first images showed her spine just ending, literally ending, there is a black hole where her spine should have been on the pictures I have. No joke, 2 different facilities, 2 different techs, 2 different doctors, all saw the same thing - her spine ending, no covering, completely open. We then got our AFP results back and they said "well she probably has some thin layer of something over her back we just can't see it".

AND TODAY..........

What did they see??????

A COVERING! WE SAW THE COVERING OVER HER BACK! The doctor now believes there is skin covering her back and that the "defect" is a closed one!  All of her vertebrae are there - no black hole.  There is still an area where the vertebrae did not completely fuse together, but they are there!!!! The doc says this should be a pretty easy fix for the neurosugeon! PRAISE JESUS!!!

Dr. Nguyen also said (again) that her back is so minor if it weren't for the signs in her brain they would have never seen this. They can barely see it on ultrasound or on the MRI! So that means (to me and you and any person without a medical degree) that functionally, she should be pretty "normal" without many delays! We are over the moon about this! What mom doesn't have dreams of their little girl playing soccer or doing gymnastics? I think we all want that for our kids. And while I know there are ways to accomodate a child with SB how wonderful would it be for her to attend the classes her friends do?! We will still have concerncs of whether or not she will need a shunt and catheterization may still be part of our lives but our girl may function, physically, just fine!

Joe and I just can't believe this. We were in tears on the way back to drop me off at work. Was her case destined to be a minor case all along or does our God just perform awesome miracles still?! I think we all know the answer to the question - there is no doubt our God is just THAT awesome! We saw the images, the doctors saw the images, and now look at her! A miracle!

Joe and I both feel like we got this miracle because of 1) an AWESOME God and 2) an AWESOME church! I wonder if this big of a miracle comes from every church? I mean DC experiences some of the most awesome miracles and I just think God is all over that church watching over its people! We both knew we were meant to be in Republic when we were, but now it is more apparent than ever! We met the most amazing friends and were introduced to an amazing church with a people that pray like none other!

Thanks for all the prayers everyone, they have worked and will continue to work! We can't wait to meet our sweet girl and it seems as though that time is right around the corner!

I go to my next regular appt in 2 weeks then start the twice weekly appointments. Praying that our co-pay is still waived for all of those appointments!

Much love to all and thanks for the continued prayers :)