We got to the appointment and they told us no co-pay! I was not about to argue with the lady. I had just gotten the news from our benefits manager at work that since it is a medical necessity and not "normal maternity services" I would have to pay the $60 co-pay at EVERY SINGLE VISIT! By the time we had Evie that would have been over $1,000 out of pocket that doesn't count towards deductibles or max out of pocket or anything. So when the lady at the front desk said "and you have no co-pay today" I just smiled and ran to my seat hoping she wouldn't find a mistake.
We went back for the ultrasound and I quickly realized I wasn't going to be lucky 2 appointments in a row with an awesome tech. We had a lady that was very rude and was not appreciative of all of our questions. She didn't tell us what she was looking at and when we asked she promised she would tell us but then never did. So we had to wait to talk to the doctor to find anything out. All we learned was that Evie was 2 pounds and measuring about a week behind. She has been measuring small the entire pregnancy (she can blame it on herself for making mommy sick all the time) so I wasn't too alarmed. She printed pictures for us (after my doctor told her to) and then we had to wait for the doc.
We got to our room and waited for about 10 minutes, but we were early anyways. My doctor came in at his scheduled time and said "what questions do you have?" I love that he always wants to get my questions out of the way and then talk and then more questions - I love asking my questions :)
My first question: Is her head fully formed? In the 3D pictures it looks like her head doesn't match up and there is a hole in it on the top. I know that there is a condition that is closely related to SB that can cause the head not to fully form so that is always on my mind. He assured me (after lightly laughing at me) that her entire head was in tact and that the way the 3D ultrasound scans causes the image to look like it doesn't match up if the baby is moving. In case I haven't said before - Evie is a COMPLETE wigle worm! My ultrasounds take much longer than they are supposed to because they can never get a good look at her and she likes to hide her SB with her hand - she's a little shy about it still!
Second question: When will I have this baby? I was hoping for May 10th as that is my great-grandma's birthday, Evelyn, who we are naming Evie after - how cool would that have been?! He said since she is measuring small anyways he would rather not complicate things by having a baby that needed extra nutrition or breathing help. He said we will shoot for May 20th first thing in the morning that way the pediatric neurosurgeon will be in (it's a Monday) and if there happen to be any complications all the doctors she would need would be there for an entire week to get her all fixed up. I promised him I was just giving him trouble about the 10th and that the 20th was a perfectly acceptable due date! (things may change though)
Third question: What will my appointments start looking like - what's the plan? We all know I LOVE a good plan!!! I am 26 weeks today and my visits are already about to get crazy! We go back in 3 weeks to see the doctor - after that appointment I go to see and talk to my doctor every 2 weeks until I am 36 weeks then every week until I deliver. But that is just talking to the doctor. After my next appointment I have to go in TWICE a week to get fetal testing. Babies with SB have an increased risk of still-birth so they like to see her twice a week to make sure the fluid is all looking good and her heart is good. I will go twice a week for an ultrasound and fetal heart monitoring. They will listen to her heart for 30 minutes and do an ultrasound twice every week and then be on my way. Praying I don't have to pay a co-pay at each of those appointments because my bank account will not love that.
We then spoke about Evie's ultrasound and the findings. Her ventricles are stable - they haven't really grown in the past 4 weeks (one of them was 1/10 of a cm larger but that could just be the way that particular tech was measuring compared to the other). This is great news. The doctor said most of the time the ventricles don't increase in size over the pregnancy (they don't know why, just one of those mysteries of the brain). So if they are going to stay where they are at they are at the very TIP TOP of the "normal" range. This doesn't guarantee that she won't need a shunt but it is a good sign that she isn't having issues with draining the fluid from her brain. Again, all of this could change and the doctor always reminds me that the signs in-vitro aren't great indicators or predictors of how she will do outside of the womb.
Next up - her feet! I am obssessed with ensuring her feet are not becoming clubbed. I know that if they are that will require additional surgeries for her to be able to walk and I would just like to avoid any other complications at this point! Her feet are NOT clubbed! Her bones look great and perfectly straight (I think her feet look big!). So more GREAT news!
Lastly, her back. The area is still measuring the same, it didn't grow and the doctor said it won't necessarily grow. It could be 1cm like it is measuring now when she is born or it could grow a little bit. Either way, he believes the abnormality is only affecting 2 vertabrae. So again, a waiting game on the size! Then my doctor brought up our AFP results. He pretty much said he was shocked at how low they were and now believes there is some sort of thin covering over the abnormality on her back. He said the combination of those test results and my ultrasound on Friday he is pretty certain there is something there. In the ultraound you can kind of see something going over the back now. Not protruding like a cyst, but some covering going over the spine. This is WONDERFUL! That means her nerve endings that are not being tucked away and protected like they should cannot just float all around and be damaged out in the amniotic fluid. While amniotic fluid can still seep into her spinal cord (which is what causes the damage) it is great that they can't be all willy nilly out there getting crazy on us :)
This is pretty much best case scenario at this point. Ventricles stable, no clubbed feet, heart looks great, most likely a covering over spine and the area is not growing.
PRAISE JESUS!
Needless to say by the end of the appointment my no-good, sour attitude about this situation was gone and I was completely relieved. It was wonderful to get good news again and I am just so thankful! Prayers do work and our girl might have just minimal damage due to this new-found covering! Again, only time will tell and we won't know the extent of her SB until she is almost a year old, but at least we have great signs now that can predict she will have pretty good function!
I have now started my insance project of making Evie's bedding. We calculated how much fabric we needed last night and we are going to make a trip to JoAnn's after lunch to get the solid colors I need and place the order for the prints next week. Wish me luck, I have a feeling I bit off more than I can chew but this was the only material I loved and we all know I have to love it to spend that kind of money!
I will continue to pray daily for our girl (actually multiple times a day - HA!) and believe that OUR GOD IS GREATER - because HE is!!
Much love to all!
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