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

Perspective.

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.