So we went to the doctor again yesterday. For some reason, I was expecting terrible news as we have gotten pretty descent news to this point. My thought process was that it isn't always going to be rainbows and butterflies so I was trying to prepare for not great news. I have been so strong in the past and known that I was meant to have our sweet angel but yesterday I did not have that feeling. I was mad that our baby girl was going to have so many "issues" and mad that I wasn't getting a perfectly healthy baby. So needless to say, the mood I was in at this appointment started off a lot differently than in the past.
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!
Friday we have another appointment with my doctor where we will do the ultrasound and meet with him to discuss everything -- I am not sure why I am so nervous! I am more nervous about this appointment than I have been for any of my past appointments.
Before, we knew there were abnormalities with Evie's spine and we were going to fill our brains with as much information as possible to simply begin to sort out what her story would entail. Tomorrow is different to me, I guess....
Friday we have something to compare all of this to. We have a "starting" point from our previous ultrasound and then it will be compared to the ultrasound we get on Friday. While we have gotten great news to this point, for some reason I am having a hard time allowing myself to believe we will always get good news at every appointment so for some reason I have prepared myself for bad news this time around (as if the SB news wasn't bad enough? I don't know).
I am terrified. What if the opening suddenly grew? What if her ventricles inflated and her head is now considered abnormally large? What if her feet are clubbed now?
Before we had no expectations because we were just trying to figure all of this out. Now we have the expectation that our God is healing her, but what if all the healing is done and this is it?
I am not sure why I am finding this so difficult the past few days. I just can't get it out of my mind. You would think I would have emmense faith and know that everything is going to be just fine and that our sweet girl is being healed slowly, but I just can't muster that up inside of me. I guess at some point this positive person that is always finding the light and standing strong knowing that God is taking care of her has a weak moment? I can't always be the strong one. I am always having to tell the family and husband that it will all be ok, but when will someone tell me it will all be ok? Will it? Will it all really be ok?
I guess I need to spend a little extra time on my knees the next few nights to find peace for myself before I eventually break.
Today I am thankful -- thankful for a few things actually!
Remember my post about being frustrated that Joe had to work on Fridays and those were my doctor days?? Welllllll.......his work decided it was better for them if he worked Saturday - Tuesday! No more Fridays! I am beyond elated that he won't have to rearrange anything to go to my appointments and he will be there for me and baby E! Our next appointment is February 15th -- hoping not a thing changed (unless of course more healing is taking place, then I'll take it!)
I am also beyong thankful for some pretty amazing friends. We have been feeling kind of lost, spiritually, since we have been home. The church we used to go to when we lived here the first time was amazing, we loved it, couldn't wait to be back. We are back now but I can't say that it is the right place for us. My only thought is that we grew so much in our walk with Jesus being at DC in Republic that I just don't feel what I felt at DC. When I say we need a DC in St. Louis, I'm not kidding! So until we find a place to call "home" here, we will listen to the DC worship CD and then the podcast in hopes of creating our own DC in our living room! Now back to our amazing friends -- Joe and I went out to eat last Thursday and we were talking about a particular family that we miss dearly, I look over and tears are streaming down his face - right there, in the middle of Applebee's - tears. My husband - crying - in public - at the simple thought of how much he misses them...my heart broke. I knew how much of an impact they had made on my life and they (she) knows it too, but I had NO clue that he had that same emotion as me - I guess we need to talk more :) Anyways, right as we are feeling most down and most desperate for our friends to be back, I get a text from her just lifting us up. Sometimes people just know what to say and when - I can't imagine our lives without them. 300 miles will NOT let us lose the friendships we made. We miss all of you guys so much!
Speaking of feeling lost - I have been feeling attacked lately. I have been so positive about our journey with Evie and coming to the realization that we have been chosen for her but sometimes I can't help but find myself wishing I was having a "normal" baby. Then I hear Nicole's voice in my head saying "who decides what normal is - maybe she is the normal one and we aren't". I know she will be perfect in every sense of the word and I feel awful after those terrible thoughts go through my head. I then remember that I am extremely THANKFUL for this baby. The doctors said I couldn't have a baby then 3 years later we got Gavin and then they told me after his birth I was physically incapable of conceiving on my own and here I am 24 weeks pregnant with our perfect baby girl - all on our own. I am thankful for this miracle, but can't help but feel attacked lately...prayers appreciated :)
We have an exciting 3 weeks coming up and I am so ready! This weekend is the women's conference at DC in Republic. Joe's parents are watching Gavin for us while he works and I get to go see all of my friends in Republic and be blessed at an amazing conference. The next week we get to see our baby girl again and the week after that we get to see her yet again and our friends from Republic are coming to St. Louis! Time sure is flying and we have so much to do but I remain extremely thankful for everything that has been given to me!
**EDIT** I can't believe I published this post without mentioning how THANKFUL I am for my amazing parents! Both of my parents have more than stepped up to the plate with us moving home. They have rearranged their schedules and lives to accomodate my little family living in their basement. They have spent who knows how much money finishing their basement just for us and putting in whatever it is that we need down there to make it comfortable for us so that we can be there as long as possible to save money and pay off our debt once and for all. We are still finishing it up - painting and such - so my parents have sacraficed the last how ever many weekends to help with the basement. When Joe works they are the first to step in. I am a complete emotional mess lately and my mom can sense when I am at my breaking point and joyfully takes Gavin off my hands so I can have a mommy break. My sister and I used to never get along and were always at each other's throats and now we can see more eye to eye. While she makes me crazy because she is a typical teenager and doesn't always pull her weight around the house, she is usually a complete blessing to me and Gavin. She loves playing with G and always helps with things I shouldn't be doing like lifting dog food and carrying things up and down the steps. I have been beyond blessed with the most understanding, caring and helpful parents out there and I couldn't be more thankful for everything they have done and continue to do for me!
