Wednesday, January 23, 2013

AFP Results

Last Friday while we were at the doctor I had my blood drawn for the Alpha-Fetoprotein test.  The test results do not change our course from here on out, it simply provides us a little more information during our waiting game. 

Today, the genetic counselor called me to give me my results.  A normal AFP test (a child without an open neural tube defect) should expect the results to be no higher than 2.5.  A child with some sort of thin covering should expect the number to be between 4-6 and a completely open defect should be expected to be between 8-10 (per my MFM doctor - I didn't just make those up!).  My MFM doctor said he expected my number ot be between 8-10.  While the numbers don't ALWAYS predict whether there is a covering or not or how thick or thin it is, the number does provide some information, generally speaking.

OUR NUMBER WAS 3.1!!!!!!

As I said, my doctor was expecting between 8-10! I can't wait until I seem him next to pick his brain on what he thinks this means.  It is barely over what they consider normal. 

While talking to the genetic counselor, she did say she has a patient right now that has a completely skin covered SB and her number was 1 something, so that means we aren't totally skin covered, but maybe, just MAYBE we have some thin layer of skin or sac or something that isn't showing on ultrasound providing some protection to our little angel's spinal cord rather than it floating all around.

The amniotic fluid is what causes all the damage to the nerves and cord and such. It is toxic.  So if not a lot of protein is coming out to be measured in my blood, not a lot of amniotic fluid can be going in, right?! I know I am no scientist by any stretch of the imagination and sometimes my practical way of thinking can set me up for false hopes, but I really do think that my baby girl is being healed by Jesus and that is why the number is so low.

Now we will continue our waiting game, but it is somewhat comforting knowing that we blew the doctor out of the water with our number compared to his expectations...he just hasn't figured out that our baby is a MIRACLE baby yet :)

Keep the prayers coming....they are working!!!



Let's start with the good news.  Joe started his job yesterday at KMOV here in St. Louis. He is a News Producer and they pretty much created the job just for him so that he didn't go work for a competitor because they didn't have a position for him open when he applied.  He works Friday - Monday (Friday and Monday are daytime hours and Saturday and Sunday are afternoon/evening hours -- could be worse).  He makes MORE money working part time at this station than he did in Springfield where he was pulling his hair out due to frutration, so that is always good. That means Gavin only has to be in daycare 2 days a week while Joe is at work so we are saving huge on daycare expenses in St. Louis - which I might add are CRAAAAAZY compared to Republic! So that's the good news.

The bad news is that my Maternal Fetal Medicine (MFM) doctor or "high risk OB" is only at his clinic on Fridays until 11:30 a.m. He teaches at SLU and does work at Fetal Care Institute (FCI) which is where Evie's doctors are. So there really isn't an alternate time we can go see him, it's Friday mornings or nothing.  THIS BLOWS! Joe is the one that completely understands what the tech is saying and showing us during the ultrasounds. I know what to ask and can gather information but it sucks not having someone there to explain what they are seeing in a way that I can understand.

I know things could be a lot worse and I am SO thankful he has a job in the industry he loves, but Fridays, really? Why can't he work like Saturday - Tuesday?!?! His work knows about these appointments but I guess we can't be too picky since this job technically isn't even really a position.

My mom has said all along she would be at any appointments we wanted her at, looks like I will be taking her up on that offer. I just hate to interrupt her busy day because I know she is in meetings or trying to meet crazy deadlines every single day at work. I know this is important to her too and she wants to do whatever we need her to do, I just hate to ask her to attend these appointments with me because the later in pregnancy I get the more frequent they are. I guess we will cross that bridge when we get to it. In the meantime I am just frustrated that Joe can't be at my appointments :(


Monday, January 21, 2013

Miracle in the Making!

We went to the doctor again on Friday, just 8 days since I had seen all the specialists at the Fetal Care Institute.  The doctor we saw was my "high risk" maternal fetal medicine doctor.  We loved him when we met him at FCI and he happens to have a practice so I decided to keep him for consistency and just becuase!

While at his office I had another ultrasound.  For the first time EVER, Evie decided she would cooperate without too much hoaxing! She was wiggling like crazy but our tech was the best yet and was able to keep up with her.  The tech was explaining everything she was seeing, and we were, of course, asking a million questions. 

Right now we know enough to get us in trouble. We know that we need to keep an eye on the ventricle sizes and that they are maxed out for what is considered "normal" so we don't want them any bigger.  We know that her head size is great right now and that we don't want any more fluid build-up around her brain.  We know how to correctly view her feet and leg bones to check for clubbed again, we know enough to get us in trouble and ask thousands millions of questions during the ultrasound! Our tech was great, she was glad we were so informed and she gladly answered all our questions and showed us exactly what she was seeing.

Evie's head was checked, her ventricles were the same. While this is GREAT news, it was only 8 days since the last check, so the doctor wasn't expecting any big changes.  Her head still looks like a little lemon, but the fluid is stable and her head size is still good. 

The tech was telling us all about her brain and I was like great, moving on, can we look at her little back -- afterall, that is what the BIGGEST issue is! I kept asking and asking how her back looked, where it was looking like the abnormality was and so on.  She kept saying she couldn't see anything!!!!!!!!!!!!!!!  She said "I can see some widening, but it's not alarming" so she pulled out a different probe and put it in my belly button.  It wasn't that uncomfortable for me but Joe said it looked painful.  It was with that probe she could FINALLY see the "abnormality" and was actually able to measure the size of the opening. 

The opening in Evie's back is less than 1cm right now.  While it will grow, the doctor said it will only be the size of 2 vertabrae and on a baby that should be about an inch, maybe a little bigger maybe a little smaller. 

This is the most AMAZING news we have gotten. The tech kept saying if it wasn't for the signs in E's head she would have never thought she had SB.  It is wonderful that we have these fantastic doctors at our finger tips and they are able to prepare us and baby girl for her upcoming fight.  What is completely insane is that Joe, my mom and I all saw the abnormality just 8 days prior without any special probes. It was pretty big and it looked like her spine just stopped and then started. It was quite literally a black hole in the ultrasound and now everything was there....the tech even pulled in my doctor to look for himself.  He said that before it looked like her spine just stopped and now it was all there. 


I saw it, we all saw it. Her spine was not there just 8 days earlier.  It was the same machine, the same doctor viewing and reading the images, I swear, this is a stinkin miracle!

I would like to be face to face with ANY person that does not believe in our amazing GOD! I will show them the pictures myself, I will tell them myself....HE is here, HE is real, HE is in the business of miracles.  If he is interested in healing my baby girl who hasn't even set foot on our soil or breathed our air, HE is interested in saving EACH of us! I promise, this is a miracle! My baby girl is being healed right in front of our eyes! I don't know how else to explain it, there isn't any medical reason her spine magically appeared. 

While we understand, with SB things are constantly changing, at least her opening is little and her spine is there. Common sense would tell us all the smaller the area is open the less damage can be done to the nerves that float in and out of that opening. 

We go back to my doctor again February 15th for another ultrasound and to meet with the doctor. I then go back to FCI to meet with Evie's doctors on February 21st.  I love that I get to see my baby girl all the time now.  While it is under the least of ideal circumstances, at least I get to see her sweet face (I think she already looks like me!) They print us pictures every is a picture of our sweet girl praising Jesus with a smirk on her face! (the part that looks like is on her face and above her head is her cord, don't be alarmed :))

Thursday, January 17, 2013


Since we found out the news of Evie having Spina Bifida we have had countless people praying for us and our sweet girl.  While most people don't think about what to actually pray (it just comes to them naturally) I sometimes have problems with knowing where to start or what to say or ask for. 

A good friend of ours we met during our time in Republic posted a prayer she had been praying for Evie...I thought I would share as it is so specific to her and her needs and for those of us that need a place to start or would like to join us in prayer it is a fabulous little prayer!

"Lord, because You have instructed us in Your word that we are to pray for one another so that we may be healed, I pray for healing and wholeness for Evie.  I pray that sickness and infirmity will have no place or power in her life.  Ipray for protection against any diease coming into her body.  Your Word says "He sent His word and healed them, and delivered them from their destructions" (Psalm,107:20) Wherever there is disease, illness, or infirmity in her body, I pray that You, Lord, would touch her with Your healing power and restore her to total health.  Deliver her from any destruction or injury that could come upon her.  Specifically I ask You to heal her spine and back.  If she is to see a doctor, I Pray that You, Lord, would show us who that should be.  Give that doctor wisdom and full knowledge of the best way to proceed. Thank You, Lord, that You suffered and died for us so that we might be healed.  I lay claim to that heritage of healing which You have promised in Your word and provided for those who believe.  I look to You for life of health, healing, and wholeness for Evie."

Thanks again to all of you out there praying for our girl.  She truly is our miracle.  We know she was sent to us for a reason.  It took a long while to accept the fact that we were chosen to be her parents for a reason, but I do think we are finally sitting in the right frame of mind.  I believe our God is healer and I know that He has a plan for our little angel. 

(On a side note: I listen to this song ALL.DAY.LONG -- it's my anthem for my girl!!! -- enjoy!)

Lots of love to you all!

Friday, January 11, 2013

Update Part 2

So I started my job (same law firm, new location) in St. Louis on Monday.  Wednesday I had a fetal MRI done and yesterday we met with a whole bunch of doctors...neonatologist, uroligist, pediatric neurosurgeon, OB (MFM specialist), ultrasound, nurse, NICU coordinator, took a tour of the NICU, genetic counselor, family counselor, footprints coordinator....literally all of those people we met with! We were at the Fetal Care Center at Cardinal Glennon from 8AM until 3:30PM.  (My work is beyond understanding!) So here is a summary (yes summary) of what we found out:

Evie's Spina Bifida (SB) starts at L4 and goes somewhere between S2-S3/4 (it is really hard to tell in this region since the Sacral area is 5 vertebrae all fused together to form one big bone, they won't be able to tell EXACTLY where it starts closing again until she is born).  The SB is completely open.  When we did our research on the internet (just FYI if you ever get a scary diagnosis try as best you can to stay off the internet!) and saw diagrams of what SB was and it will show a little baby with a spina cord that kind of goes and then comes out, loops up and then goes back in.  Hers doesn't do that.  It never loops up.  It is in place all the way down but there is NO covering.  No cyst, no skin layer (that they can see) no anything. It is quite literally a gaping hole in her back, exposing all of her nerves. 

This is the biggest problem at the moment.  Since there is nothing over the spine her nerves are being damaged by the amniotic fluid and her spinal fluid isn't able to be contained.  Also for concern, the area in which the opening is, is right where all the nerve endings come together.  So there are multiple nerves being damaged, not just 1.  We anticipate with this location Evie will be able to have good function of her hips and thigs but the bottom of her legs will more than likely be pretty weak and she may need leg braces to help support her to walk.  This isn't to say she won't need a walker or crutches to learn to walk and most of her motor skills will probably be delayed. 

The hardest part for me emotionally about the back issue of this diagnosis is knowing that there is no covering.  Her nerves are nicely tucked away and protected. They kind of go in and out of the back and float around.  I think of like seaweed, it floats and moves around like that (in my head) -- the doctor agreed that is sort of what they are doing.  I haven't met or talked to anyone who has a child with SB that hasn't had a cyst or skin covering the nerves so I am really unsure what to expect at this point. 

Also -- to make matters MORE confusing...what Evie has going on isn't technically, technically SB.  SB is when the cord either comes out and has a cyst or covering or doesn't come out and has a cyst or covering.  So while it is classified as Spina Bifida for a generality, it is really just what they call an open neural tube defect.  Again, don't look it up on the internet, the internet is far scarier than what I think we are dealing with.

Our doctor did reassure us that this case is what he would consider to be a "small to medium" sized cased.  He has seen much, much worse and everything else with Evie (will explain later), is looking good to this point.

So, those are the back issues.  With SB there are other issues with the brain and legs to deal with, though.

So let's do the legs.  Evie's legs are normal right now.  Her feet are not clubbed and are pointing in the direction they should.  Her bones look  nice and straight at this point.  While this is FABULOUS news, that doesn't necesarily mean it will stay that way.  Since there are so many nerves being damaged from floating around there is a possibility that the nerves could get damaged down the road and cause club feet or something else.  At this point we are just believing that God is taking care of her and will protect her and heal her. We are at peace with this.

Now, the brain.  Most of the time when people talk about the brain that is what they are most worried abut.  With SB that isn't always the case.  There are minimal learning difficulties with kids with SB in the region Evie has it.  It is mostly just mis-shaped parts in her brain.  For starters, her head, when looking down, so what would be the top of our heads, is shaped like a lemon right now.  It isn't oval and kind of comes more to a point at the front.  This will correct itself before she is born and when she is born you shouldn't be able to tell she ever had "the lemon sign".  She also has the "banana sign".  (I know, we have an entire basket of fruit up there!) -- Your cerebellum is supposed to be shaped like if you cup your two hands into the letter "C" and then moved your hands close together so that your thumbs touch -- that is what it should look like.  But since her spine is pulling down where her opening is hers is more shaped like a banana, so start moving your thumbs down and you can see how it starts to look like a banana instead of the 2 "Cs".  This doesn't cause any harm, it is just another thing that shows that her spine is tugging a little bit.  Hers isn't completely rounded out in the middle, you can still see where it goes in a bit like it should, just not all the way. 

Now, onto the ventricles. The ventricles are the spaces in your brain that drain fluid away from the brain.  They should be under 1mm to be considered "normal".  Hers are at .9 and right at 1mm.  While this is on the top range of normal, they could be a lot worse already at this point.  We don't want them getting too large.  We are completely prepared for her needing a shunt after she is born which will help drain the fluid from her brain and deposit it in her stomach where it will be absorbed. She will be monitored closely after birth to see if she needs to have the surgery to place the shunt. 

Her head is not considered large at this point.  While that isn't an indicator of much since Joe has a small head to begin with, it is a sign that the fluid that is already around her brain isn't considered severe to this point.  For obvious reasons, the increased fluid and swelling of the head can cause major issues, and I would LOVE to avoid them!

Now onto what will happen once she is born -- I will deliver baby girl via C-Section sometime between 36-38 weeks depending on her development.  While it seems logical for her to come earlier than that to avoid any more possible nerve damage to her spine, there is no proof that delivering early will prevent further damage. So, it makes sense to not cause any more problems than we already have and let her cook as much as possible without harming her or letting me go into labor.  I will deliver her at St. Mary's Hospital in St. Louis.  We wil have her for no more than 2 hours before she is taken.  This could potentially be the only time Gavin gets to meet his baby sister until she is released from the NICU.  We will hold her (only on her tummy to prevent pressure on her back) and take as many pictures and get as many kisses as possible.  She will then be transported via ambulance in her mini NICU unit with Joe to Cardinal Glennon Children's Hospital which is about 5 miles up the road.  She will get placed in the NICU there and undergo surgery to close her spine and skin up before she is even 24 hours old.  As long as the surgery goes ok and a plastic surgeon isn't needed to close her skin, (if there isn't enough skin, slits have to be made in her back to get it to stretch and a plastic surgeon is needed to do that), she will be able to come home in 2-3 weeks.  If the plastic surgeon is needed, it could be up to 3 months.  Depending on the flu season and any sicknesses that could be going around, Gavin may or may not be able to be in the NICU.  We have to be prepared that he won't be able to go in, but we are optimistic he will be able to.

Each room at the NICU is private with a pull out bed and rocking chair.  They have the little incubator looking beds when she is being weaned off the heat and little mini cribs for her.  We can decorate her room and make it like home.  I am excited about that part.  The visitation is a little interesting there.  There aren't many rules, except NO children under the age of 16 are allowed back unless they are a direct sibling of the child in the NICU.  Grandparents and parents are allowed 24/7 and all other visitors must leave by 8pm.  You have to be on our pre-approved list to get back there and have to show ID at 2 different checkpoints in the hospital.  Each NICU nurse has a maximum of 3 babies at any one time (depending on the conditions of each of her kiddos).  I get to eat there for all my meals for free since I will be nursing and their cafeteria food is actually really good!

I am pretty upset about being so far away from my little baby and everyone else gets to see her except me and then who does the family go see, her or me? I know that it is what is best for both of us, I just hate that we are so far away and I won't get to see my baby and she won't get to hear her mommy.

After she is released we will have numerous follow up appointments the first 3 months.  If everything is stable she will come back at 6 months and then at a year.  I am not even looking past the NICU at this point but at least we kind of know what we are expecting.  The hospital has "clinics" every month where the entire team of SB specialists will be in the same place at one time to do all of our appointments on the same day to prevent us from running around, so that is great. 

Now to my family that is reading this -- my sister, Joe's sisters and all our nieces and nephews have a 1-2% increased risk of having a baby with SB.  It is highly recommended that all of you take increased doses of folic acid at least 1 month prior to attempting to conceive.

We have confirmed that Evie does not have the Cystic Fibrosis gene (my sister is a carrier so I was tested -- Evie's bowels were also showing "bright" on the first ultrasound which could be a sign of CF -- but she is all good!) AND -- we just found out Evie's chromosome count is all good! So no Downs Syndrome or any other disorder.  The only thing on our plate is the SB and that's enough for us!

I do believe that is what we know for right now.  Yesterday was complete information overload and I am SO thankful my mom was there to take notes and ask the questions we were too worn out to ask.  I got home and read all her notes and sometimes it seemed as though I was hearing some things for the first time!

We are now going to fight for our baby girl, be her biggest advocate and do everything in our power to do whatever we can do for her.  When we first got this diagnosis we kept asking "why us" now we are at peace with all of this and are thankful to have been chosen to be her parents. 

I have been reminded again and again that sometimes everything can't go perfect because if it did people wouldn't need Jesus.  When things like this happen it can be easy to be mad and turn away but it is in times like these that we need to RUN to Jesus and let him be in control.  I am working on the "being still" part and letting him be God, because afterall, HE has this all planned out for us! He is showing us his handy work and that he is still in the business of miracles and we are just so thankful, overjoyed and humbled by it all.

Thank you to all of our friends and family for your continuous love, support and prayers.  Thank you DC for all of your prayers over the past weeks and for praying for us last Sunday.  We miss you all!

Time for a life UPDATE!

Well I guess it's been a while -- time for a life update to keep all my family and friends in the loop! 

Gavin is now ONE! We had his first birthday party on his actual birthday, January 5th. The theme was Winter ONEderland and we had lots of family, friends and treats! I decorated our house (in Republic) with snowflakes and the colors were blue, red and white.  We had an entire table of candy, snow cone machine, punch fountain and lots of laughs and presents! We had a lot of fun at the party and also said goodbye to our friends we had made in Republic as we moved back to St. Louis on Sunday, the 6th. 

As most all of you know, Joe and I found out we are expecting our second little miracle sometime in May.  We found out we were pregnant in September, which was a TOTAL surprise.  When I finally conceived Gavin they told us I was inable to conceive on my own and that they would see me back next time we wanted to add to the family.  Without getting into specifics, there were physical reasons I couldn't conceive. Well to our suprise, the doctors were totally wrong and we are now expecting a baby girl, Evie Nichole. She is named after my great-grandma, Evelyn.

While we never really thought I would actually be able to get pregnant we had been talking for about a month or two how nice it would be for our kids to be close in age, like 2 years apart.  Since it took so long with Gavin we figured, what the heck may as well see if it happens.  We were elated and told our family when I was 8 weeks along and had the ultrasound pictures to prove it :)

We found out on December 22nd that our  little baby was a girl and we were elated that we would have one of each.  What seemed to take forever to get our family going was quickly, and I mean quickly, becoming a reality that we never thought we would have. 

On December 31st we had our anatomy ultrasound with the doctor (we found out gender at Ultrasona -- not a medical facility).  While at the appointment we really had no expectations.  We figured they would do some measuring, confirm it was a girl, print us some pictures and we would be on our way.  That isn't exactly how it went.

I was on the table getting the ultrasound, the tech was talking, he was having a hard time finding some things in her brain, we didn't think much of it because she was being stubborn and not giving him good angles, so we just assumed that was the problem. He confirmed it was a girl and that all took about an hour.  He said he was going to pick up the pictures off the printer and he would be right back.

We waited. And waited. And waited.  About 15 minutes passed and a different lady walked in our room.  It was the doctor, maternal fetal medicine doctor.  She said she needed to look at the ultrasound herself.  My face went blank, with tears running down my face I said "is something wrong?" and she just shook her head and said "we think so".  I couldn't stop crying at this point. I was uncontrollable. Shaking. 

The doctor pointed out sime things in baby Evie's brain.  Her ventricles were not sized correctly, her cerebellum was not shaped like a dunbell, it was shaped more like a banana and the top view of her head wasn't an oval shape, it was more like a lemon.  She then went and attempted to look at her spine, which proved to be another difficult feat.  I laid on my side, we wiggled her around and finally they got an "ok" image and said there was a problem with her spine where it didn't close.  The term for this is Spina Bifida.  I was heartbroken. Completely heartbroken.  The doctor wouldn't explain to us what it was there in the ultrasound room.  She called a nurse to get my vitals - I am now on the verge of passing out, can't stand, crying hysterically, shaking and asking God "why me, why my baby?". 

A million things are running through my head, I don't even know that I want to share everything I was thinking but I was a mess.  While I was waiting for the nurse to come and get me I called my mom and told her we didn't know much more but that Evie had been diagnosed with Spina Bifida.  I then called my dear friend Jen and asked that she please start praying and let the girls know at church that we were in desperate need of prayers and strength.  Then I sent out a million text messages, they all read the same "Ultraound this morning bad.  Baby is abnormal. Has spina bifida. Don't know much more.  I'm a mess. Talk later.".  I don't even remember who all I sent that to but I knew I had to let people know. 

We met with the doctor.  We didn't know what to ask because we didn't know what exactly the condition was.  She couldn't tell us an exact location of the Spina Bifida because the images were so bad.  She gave us some information on fetal surgery at a center in San Francisco, CA and I got blood orders to check for other defects.  We left, in hysterics and went home and cried for the rest of the day. 

We decided we should get all the information on both fetal and post-natal surgery.  The next day all the offices were closed for New Year day so we had to wait until the 2nd to get any more information which allowed us time to try and understand just what was going on and what the condition was.  On the 2nd I talked to the doctor who said she was going to call San Francisco about getting us an appointment to meet with those doctors and that she was referring us to another facility in St. Louis.  About 2 hours after I talked to her the first time, the doctor called back and said I was not eligible for the fetal surgery.  I was completely heartbroken.  To me, that was the only way that I knew that I could help our baby girl.  It was the only thing that could help reverse some of the issues she would be facing and the only option I could see at the time that made sense.  Since this option was off the table, I felt helpless and that all hope was gone for our baby girl. 

Now skip ahead, Gavin's birthday party (as mentioned above) was in 3 days and I had a ton to do.  My last day at our Springfield office was Thursday and mom and I were cooking and preparing for the party all day Friday. Saturday was the big  party and after everyone left we went into a packing frenzy and started loading trucks.  Sunday morning we went to church for our last service at DC.  We were completely moved.  The entire church and Pastor Chad prayed over us and our baby girl.  I was brought to tears more than once.  It was going to be the last regular service I stood next to my best friend and worshiped the Lord with her.  She gave me a journal and a bracelet.  I am forever grateful.  I was able to keep it together saying bye to everyone until I got to Rob.  I criend my eyes out.  Rob and Jen have been there for us at the snap of a finger both physically, emotionally...just everything, anything.  It is hard to understand that we deserve such a friendship because sometimes we don't feel worthy, but we are forever grateful for their family. 

We went back "home" picked up my sister and a few other things and headed to St. Louis.  We got to St. Louis around 2:30 on Sunday afternoon and unloaded everything.  We are staying with my parents for a while to get things figured out.  They finished their basement into an apartment for us.  It is about 750 square feet, but we will make it work.  The problem is, it didn't get finished until Wednesday. That means all of our stuff is dumped in their house everywhere, literally everywhere.  We plan on getting everything downstairs today and tonight and should sleep in our own beds.

Gavin is cutting more and more teeth.  He is working on teeth 9, 10 and 11 at the moment along with no regular schedule and a different place with different stuff. So needless to say, the past week has been rough on all of us.

Monday morning I started work at our St. Louis office and everyone has been great.  I love the people I am working for and love the office itself. 

Yesterday we had an entire day of doctor appointments at the Fetal Care Center.  It was completely exhausting. 

Later today I will post what we found out yesterday....I will let your eyes and brain rest from this gigantic post!