A Letter to my Daughter

Dear Abriana,

Your dad and I waited a long time to meet you, but we've loved you for years. We waited, sometimes not so patiently, to get to see your face.

When we learned you were officially on your way we couldn't even believe it. We didn't think it was possible.  We were so excited!

When we learned that you would have some hurdles to overcome, we were scared and heartbroken for you. But we quickly learned what an inspiration you would be even before your birth day and that God would use you to help others see the beauty in their own hurdles.
I guess what I really want to say to you is:

I think your beautiful.
I think you're perfect.
I love you just the way you are.
I want you to be happy.
Your expressions are fantastic!
Your timing is humorous!
You're an inspiration.
You're a great snuggler.
I love you!!!!

I love you more than words can say. Sometimes people look at me and say how amazing we are because of you, but I have nothing to do with it. It's all you. You give my life meaning and bring me the greatest joy. Even when I'm exhausted and you're crying, you're my joy.

I've always wanted to be a momma and you gave me that gift.

Thank you for being the amazing tiny human you are! I love you! I love you! I love you!

Forever & Always,
Your momma


Random Pregnancy Thoughts

  • I can't believe I'm actually going to have a child.
  • My husband is amazing.
  • When she's born no one will ever say 'oh she's so beautiful' about her newborn face.
  • I'm hesitant to share my daughter's picture with the world because I'm not sure I can handle anyone's comments. 
  • I love being pregnant.
  • I love rubbing my belly and 'cuddling' with my child. 
  • My greatest fear (currently) is having them pull her out and not hearing her cry.
  • If you recline just slightly it's like I add space to my abdomen and my daughter can sit in my belly instead of in my ribcage. Which is lovely.
  • People have sweet things to say about my daughter's face, even if they don't mean them, I appreciate their support. 
  • I think my daughter sees my ribs as strings and she tries to strum them. This is slightly painful (29weeks).
  • I feel like I'm running out of time! She'll be here in 6-9 weeks!
  • Is it weird that choosing a name for B.B. makes me more nervous than choosing a neurosurgeon?!
  • We chose a name for B.B. (31 weeks) I hope we made a good choice!
  • Feeling more uncomfortable now. (35 weeks) Getting nervous for her arrival. Finally met the docs that will deliver her. LOVE our nurse (Jackie). 
  • Overwhelmed by what's left to do before her arrival. 
  • Think I lost at least part of my mucus plug today... Scary! (35 weeks) Stay in there, baby girl, stay in there!!!!!
  • Exhausted. (35 weeks) Starting to feel truly pregnant. Tired all the time. Everything takes so much effort and energy to complete and I'm exhausted after every little thing. And I think my child might break my pelvis in two.  Every time I stand up I can feel how much her weight is sitting on my public bone. 
  • I'm pretty sure I could sleep for 24 hours and still wake up tired. (37 weeks)
  • The amount of people praying for and supporting us is overwhelming. It makes me cry in a wonderful way.
  • Ever since I was a little girl I've wanted to have a baby. I just thought it was the coolest thing to see that big belly and know that a new life was created within. It's just such an amazing process! Now that I get to experience it, I will say it did not disappoint. Easily the coolest experience I've ever had! Can't wait to meet my little girl. (3 days til delivery)
  • I feel like I can't remember a time when I didn't have this belly. (1 day til delivery)

Journey to B.B., part 5

Doctors. (July 31st)

Since getting pregnant I've met eight new doctors. Eight. And let me be clear, I'm NOT a fan of doctors. Going to the doctor or dentist used to give me some serious nerves. I've gotten better with doctors, merely because throughout our infertility journey I saw so many of them, but let's not talk about the dentist. Anywho, it's hard for me to find a doctor I like. It's rare that I can ask all my questions and not feel like I'm being talked down to or an idiot for asking. I like to know everything about anything that's going on with me (or now, with my child). 

We'd talked with the neurosurgeon that we were directly referred to about a month ago. He was fine but didn't seem to click with us. After recently finding out I'll have to change OBs and the hospital where I deliver so that my daughter can be properly taken care and in the same building as me (vs. across town at another hospital), we went back to neurosurgeon searching. We quickly got an appointment to consult with a doctor a little further away but recommended by more than one person we'd talked to. 

We talked to him for five minutes before he had to step out to take a call (he was on-call that day) and I looked at Mike and said 'I already like him better.'  He came back in and we continued to talk for probably 45 minutes. He was open to discussing our daughter's options, talked about new procedures that no one else had offered us as an option, and gave her a positive prognosis. Our high-risk OB is constant doom and gloom and it's hard to stay positive when we talk to him. This surgeon wasn't all rainbows and sunshine but gave us the realistic prognosis that she will be able to learn even she's delayed in her learning vs. our high-risk OB who constantly reminds us he thinks she'll be in a vegetative state. The surgeon just seemed to be on the same page as us. It was definitely a feeling of if you had to make a decision for my child on the fly and weren't able to consult me, I would trust that you made the same decision I would for her. So, I think he's our guy. I'll deliver there and they'll evaluate her and do any necessary immediate procedures to relieve the pressure on her brain. We're still waiting to hear back from the Best Doctors service with our insurance. But if nothing in their report drastically changes our outlook, this surgeon may be our encephalocele surgeon too. 

Breathing a small sigh of relief to have met a good doctor.

Update: We heard from the Best Doctors service and it was mostly everything we'd heard before.  We changed OBs/high-risk OBs to deliver at the same hospital B.B. will be evaluated at. Very happy with all our moves, despite the chaos. 

Journey to B.B., part 4


Since our daughter's diagnosis, we've gone from thinking she may not live, to she may be in a persistent vegetative state, to she may be slow but has the ability to learn. To hear that anything is wrong with your child (who despite not yet being in your arms, you love with all your heart) can be heart breaking, because we all want the best of everything for our children. 

However, since her diagnosis, 10 weeks ago (wow, I can't believe it's been that long), we gained some knowledge and I've gained some perspective. To have a child with a frontal encephalocele in the U.S. is rare. Most encephaloceles are occipital, which means that they are at the back of the skull. Occipital encephaloceles can have as much as almost the entire brain in them and can be fatal. Where as most frontal encephaloceles are smaller and it's rare that they're fatal.

After joining a Facebook group of families of encephaloceles, I've learned a lot and am very grateful that my daughter's condition is not worse and am excited for her future. There are families expecting babies with occipital encephaloceles who can merely plan for the few hours they'll have with their child before they go to be with Jesus. I thought BB's diagnosis was devastating at the time because of the grim prognosis we were initially given, to have to plan my child's funeral before she's born just blows my mind. The amazing strength and support this group offers everyone is fantastic! Doctors are not always the most educated on every condition. Many families have been told their child wouldn't live, but years later are posting pictures on this group of the new skill their child learned to accomplish. This group helps to give hope and help to educate and support families of encephaloceles. It's just a little Facebook group but it's given me a connection and information that was nowhere else out there.

Grateful for that group and excited for my daughter. :)

Journey to B.B., part 3

We went to our follow up high-risk OB appointment, two months after B.B.'s diagnosis. I didn't think that I would mind being at that office. I had accepted her diagnosis and began to think of it as just another appointment. But being there definitely wasn't just another appointment. They have this system (which I understand for the kind of office they are but as a patient is awful). The sonogram tech does the sonogram and takes all the photos and isn't allowed to tell you anything. Leaves the room to discuss things with the doctor (even though that's not what they tell you they're doing) and then the doctor joins you in the room. The whole experience of being there is emotionally exhausting and every time I see that doctor I want to punch him. I think that has less to do with him and more to do with the fact that he only ever has bad news for me but still. 

So B.B. is considered to have hydrocephalus, in accordance with the size of her ventricles. The cranial-spinal fluid in her ventricles went from sizes 8 and 10 to 12 and 20. Below ten is normal, above 15 is hydrocephalus. Interestingly enough (and somewhat unfortunately) her skull is a normal size. So the additional fluid in her skull is putting pressure on her brain matter and forcing more of it into her encephalocele, which has grown from a half inch to an inch in diameter.

I've accepted her diagnosis but I still want the best of everything for my daughter. So it's hard to accept that she will only get worse, losing more brain matter to the encephalocele. I've been very hopeful for her outcome since being educated about what this means for her but the more brain matter she loses, the harder it is to be hopeful. Not that I won't do everything possible to help my daughter be everything she wants to be, it's just hard to find hope some days.

Journey to B.B., part 2

I was under the illusion that our journey to BB had taken a turn for the normal. A naturally conceived child and a normal (other than my already known fertility issues) pregnancy. That all changed on Friday, May 24th.

I was directed to go to a perinatal doctor by my OB but wasn't told why. I went to the appointment by myself because Mike was preparing to drive to Ohio and I wanted to allow him time to sleep before his long drive.

I checked in and was eventually called back for the sonogram. The tech did a full assessment. She took pictures of everything, organs, structures, blood flow, etc. I asked lots of questions about what we were looking at. I like seeing all her details and think anatomy is cool. So it's always interesting to me to view the sonograms. She did explain some things as I asked but when i asked, she told me she wasn't allowed to say anything if she saw something that wasn't normal. The tech then left the room saying she was going to check her list and would be back to try and get a profile picture of her face since she wasn't able to get one with B.B. dancing around.
I sat in the room, sonogram gel still on my belly and waited. When the door opened again it wasn't the sonogram tech but the doctor. I was a little taken aback. I didn't expect anyone else to come in. He introduced himself and told me he had good news and bad news. He explained that most everything looked perfect but that her skull had an issue. He said that she had what's called a frontal encephalocele and began to explain that when the skull forms there are three pieces that come together to form the forehead and hers didn't completely come together causing brain matter to seep out. At this point I'm of course crying and he asks if there's anyone I can call. I said yes and called Mike. When he answered the phone I told him that I needed him to come to the doctor's office. I thought it was coherent but apparently it sounded a little like babble. The doctor said let me talk to him and I handed him the phone. He told mike that our baby had a hole in her skull and had brain matter leaking from it (which put crazy images of brain matter just continuously leaking out of her skull into his head) and pretty much handed the phone back to me. I asked where he was and how quickly he could get there and he said he was on his way. It took him 45 minutes to get to the office.

After hanging up with Mike the doctor asked if he should wait to explain more until Mike arrived but having only half the information was worse than having all of it. I said no, that I wanted him to continue. He finished explaining that her skull hadn't fused at the forehead and that there was brain matter that had seeped through the hole and was sitting on her forehead. Once he finished his explanation, I asked what we did now. They told me all they could offer was pregnancy termination. They then escorted me to an empty office to wait for Mike to arrive.  While I waited, I googled, I looked at the copied page from a medical book the doctor had given me, I cried. I didn't know what to think. All I could think was will she survive, how could this have happened, I would never terminate this pregnancy.

After what seemed like forever there was a knock on the door and a nurse let Mike in. We hugged and cried. I apologized for him having me as his wife because I'm obviously broken in every way, which he promptly stifled and said he wasn't sorry at all. I tried to give the best relay of information that I could. But there was quickly another knock on the door and we were escorted back to ultrasound room. The doctor ran through the sonogram images as he explained what everything was. We asked questions like what can we do? What's her prognosis? What do we expect? But we didn't really get a lot of answers. I asked if she lived til birth what was her prognosis but was cut off half way through and he did affirm that she would live til birth but said only as she grew would we know her mental capacity. He continually told us to prepare for her to be in a vegetative state and that because of the brain matter that was in the encephalocele was disorganized that the brain matter behind it in her skull would be disorganized. We were once again told our only option was pregnancy termination. At this point I honestly considered it. Then we were told if we wanted to do the pregnancy termination I was at the end of the time frame where termination was allowed in this area. He noted it was a fairly safe procedure but that it hadn't been done frequently on unicornuate uterus, and I noted, because they're rare. It seems to be a trend in my health history.

They gave us a minute and we hugged each other and cried some more. I don't think I ever truly knew what the words 'and they wept' meant until this moment. We wept. We eventually told them we just needed the weekend to process all this information. So we left there, followed each other in our separate cars home. Mike called his dad to let him know he wouldn't be making the drive to Ohio this weekend.

When we got home Mike and I talked. I was horribly scared of not being able to care for a child in a vegetative state and of this stress tearing our relationship apart. But we both agreed that when the doctor said they would stop her heart to do the pregnancy termination we both just couldn't fathom agreeing to that. Faith had gotten us this far (I hadn't even expected that I would be able to get pregnant after trying for so long) so why would we turn our backs on whatever God had planned for us and our daughter. We knew it wasn't our decision to make. Whoever our daughter was to be is who she was to be and we were not going to stand in the way of that.

The rest of the weekend is a little bit of a blur, but I do remember waking up at 5am crying. I thought I was being quiet as to let my husband sleep but he heard me and just rolled over and held me as I cried. Scared for the future, unsure of what all this meant.

We spent the rest of the weekend resting, researching, and explaining to people. My sisters came over for memorial day. It was good to be around family.

In the end, I knew that if Mike and I were in it together that we could take on any challenge.


Journey to B.B.

Everyone loves to share the exciting news of being pregnant. Of expecting. But it's the GETTING pregnant part of the story most people don't share. And for some that's understandable. They got pregnant the "old-fashioned" way, no real story to tell.  However, for many of us it's not quite that simple. This is our journey to Baby Block (B.B.).  I wanted to share our journey because I know that through this process I felt very alone until I was referred to a friend of a friend's blog. I want to share so that other women know they're not the only one who struggles. (If you don't want to know all the medical details, this is your warning. Feel free to skip to the section labeled "Surprise")

We started trying to get pregnant in August of 2010, the old-fashioned way. Due to family history, I knew that I may have some struggles.  So I used ovulation predictor kits but we had no success.  The predictors were never very clear (I would later know why but at time it was just annoying).

I went to see my OB/GYN in February 2011 for my annual exam. When I explained that I had only ovulated twice in the past 5 months, she agreed something was off. She put me on Clomid a drug to induce ovulation and we were to have "timed relations" (I always hated that term). This was probably the highest stress time between me and Mike.  It's very easy to blame each other for, well, pretty much anything at this time. This went on for March, April, and May. I was also sent for an internal sonogram to check out my ovaries, where it was determined that I had polycystic ovarian syndrome (PCOS). (not a huge surprise due to family history and assumedly the reason I wasn't ovulating regularly and why the ovulation predictor kits were never clear) When we came up still not pregnant in May, she referred me to a fertility doctor. This, scared the crap out of me. I had no idea of what to expect at the fertility doctor and put off making an appointment until August.

In August 2011 we went in to our first fertility doctor appointment. Usual doctor's office stuff, height, weight, medical history, and a consultation with the main doc. Then came the testing. First there was a blood draw. I fasted all night, went in on an empty stomach, they drew 11 viles of blood and I was fine until I got to my car afterwards and I started to lose feeling in my fingers and my legs started to give out.  Luckily they had told me to bring food with me and I sat and ate my granola bar in my car until I felt safe to drive.

Then I did an HSG (hysterosalpingogram), where you get into a hospital gown, walk into a room where everyone else is in head to toe lead, and they shoot dye into your uterus as they take radiographic images to see the shape of your uterus and if your fallopian tubes are open.  It's a fairly quick process but is highly uncomfortable. Not quite like menstrual cramps, but like your insides are quickly expanding and may explode. As I'm still sitting on this table for the HSG the doctor viewing the results quickly tells me that either my uterus is sitting perpendicular instead of parallel to my abdomen wall or I had what they call a unicornuate uterus, which basically means only half a uterus formed when I was in utero and they wanted to do a saline infused sonogram (SIS) to see more. I kind of nodded my head, and stunned was guided out of the room and into a bathroom to change back into my clothes. And then, I cried.  I had no idea what that meant for me and was so scared and nervous.  Since I had hit day 15 in my cycle they weren't going to let me schedule the SIS until the following month for fear of disturbing any possible pregnancy.  If I wasn't so upset I would have laughed in their faces for even considering this a possibility.  After a year of trying and not currently having any medical assistance for ovulation or anything the thought that I could magically get pregnant on my own made me laugh at the ridiculousness of the thought. I know they have to air on the side of caution but it was just ridiculous to me.  After some begging, they agreed that if I refrained from 'relations' I could have the SIS the following Monday and so I did.

During the SIS they shoot warm saline into your uterus and do an internal sonogram.  As they viewed from right to left, you could see uterine wall, ovary, fallopian tube, nothing, nothing, ovary. They confirmed, yes, you have a unicornuate uterus and explained that basically in utero organs form in two halves and then come together.  When my uterus formed, only the right side formed.  So I have half a uterus, one fallopian tube, and two ovaries. It is possible to get pregnant and carry a baby but could cause pre-term labor and doesn't allow for me to carry multiples, which means any fertility treatments we did we would have to very careful to ensure we only had one egg at a time.

We were given all our options and decided to go with Intra-Uterine Insemination (IUI).  I began taking metformin for my PCOS and letrozole to induce ovulation. So I'd take those and have a sonogram between day 2 and 5 and then another around day 13 and when the follicles on my ovaries were big enough, I'd inject (yes, stab myself with a needle) a hormone that night and we'd do the insemination two days later. It was quite possibly the least romantic thing ever. You put your junk in a jar, they clean it up, and squirt it in me. .....yeah, seriously unromantic.

We could only do the IUI if I ovulated from the right side because my left doesn't have a fallopian tube. And while it's possible for the egg to make it's way over to the other side, it's not as likely. So it went like this:
October - IUI - unsuccessful
November - IUI - unsuccessful
December - ovulated from the left, no IUI
January - IUI - unsuccessful
February - IUI - unsuccessful

They normally only let people do 2-3 IUI's but agreed to let us do 4 because of my unicornuate uterus. After four unsuccessful IUI's they said we could try in vitro fertilization (IVF) or do a laparoscopy. I felt like there was a missing piece as to why this wasn't working and opted for the laparoscopy/hysteroscopy.  It was also covered by insurance and IVF (like most fertility treatments) was not. So I went under the knife.  They went in through my belly button and took a look around.  Discovered lots of endometrial lesions, enlarged ovaries, endometriosis, and confirmed my unicornuate uterus. So they burned off the lesions, drilled holes into my ovaries, and scraped out all of my endometriosis.  This is now March of 2012.

After healing through the month of March, they agreed to let us try the IUI's again.
April - ovulated from the left, no IUI
May - ovulated from the left, no IUI
June - ovulated from the left, no IUI
July - IUI, unsuccessful
August - ovulated from left, no IUI

At this point, I'm seriously annoyed.  The laparoscopy was supposed to fix me! And instead all I'm doing is ovulating from the wrong side. Our doctor's recommendation was to do IVF and then it didn't matter which side I ovulated from, we could use all the eggs. IVF, like IUI, is not covered under insurance.  IVF, however, is about 15 times as expensive as IUI. The plan that Mike and I looked at would allow us three fresh and three frozen cycles (or until we brought home a baby), costing about $30,000 and would refund us the money at the end of all of the cycles if we didn't bring home a baby. This sounded like the best plan since I wasn't convinced that I could even carry a child but $30,000 isn't pocket change. So with my bad attitude and a lack of 30 grand, we decided to take some time to relax and build savings.

August 2012
So after two years of trying to get pregnant and fertility treatments, we took some time to research and relax. We attended adoption webinars, read books and searched the internet to find out all we could about IVF and adoption. Adoption has always been on the table as a part of our family plan, I just never thought that it would be our only option for a family. I would always be sad that I missed out on the experience of pregnancy and childbirth (even if I don't love it, I wanted to know what it was like) but whatever children God blessed me with would be mine and I would love them to the ends of the Earth. In October I got a new job and figured even if we were to pursue IVF we wouldn't do it until I had established myself there. Well, God had other plans. Apparently that was waiting too long for Him. So in January, 3 months in to my new job, when my boobs were really sore, I began to question if it was possible. On January 24th I took a test, peed on a stick, and took a pregnancy test. The faintest second line appeared. Hands shaking, I took the test to Mike and showed him. After all the disappointments he was a little skeptical. He asked if I'd ever gotten a second line before and if it was possible to be a false positive. I'd never gotten a second line before but there was always the possibility of it being a false positive (I was still a little skeptical too). So that night we went and bought more tests and the next morning, my 29th birthday, I took two more tests. Both came out positive. Still a little shocked but excited, I called my doctor's office that morning.  Based upon my last cycle they wouldn't see me for a few more weeks. 

For three weeks I kind of floated through trying not to be too excited. When we went to the doctor's office, and they did a sonogram, and we saw that little heartbeat beating away, it was still a little surreal but super exciting. It wasn't just my imagination, or a false positive, there was a little one with a heartbeat growing inside me.

There's so much more to say, but this is where it begins. This is the beginning of our journey to B.B.