1 year ago I found out what an encephalocele was...
I year ago I was told that it was likely that my baby's brain was growing out of the back of her head through a hole in her skull...
I year ago today I'll admit I wasn't hopeful, and yet, I was still praying and trusting for "my" miracle...

What a difference a year makes!


I got "my" miracle!  There is certainly no hole is this baby girl's head.  She is "talking"  mama, dada, ball, she is crawling, she is thriving!

And we are so glad that our God is greater, our God is stronger!  And that doctors are earthly and as such, sometimes wrong.

Last night I spent a little time reading through most of my blog posts (at least the bigger ones) about this pregnancy.  What a little trip down memory lane.  And for the most part, it was a good trip.  A reminder of where we have come from since 19 weeks.  I remember that Thursday morning in May as if it was yesterday.  I remember my OB telling me he was so sorry, and I remember walking out of the office feeling like someone had punched me in the gut, and sitting down on the little bench just outside the door and bawling my eyes out, and screaming, "Why?"  I remember looking at my husband and gritting my teeth through the tears, and saying "Why doesn't anything ever work out for me?"  I had spent the last 2+ years prepping my body to carry this baby.  I felt betrayed, abandoned, and filled with the most immense sadness I can't even think of the words to describe.  It was raining that day.  It was raining hard.  It was fitting.

As the weeks went on I shared my story, and I started getting notes of encouragement and prayers.  From people who had walked similar journeys as well as ones that hadn't. Some of their stories touched me deeply.  I found out that people all over the world were praying for my baby!  I still had a lot of days of bitterness, but some of my bitterness turned as the days and weeks passed.  I endured doctor appointment, after appointment of different hypotheses and guesses as to what was wrong with our baby, so many so that I received a printed list, on an 8-1/2 x 11 sheet of paper, single spaced, of every "guess" last Thursday at my appointment.  The "guesses" took up 3/4 of the page!  I still heard what the doctor's said at each appointment, but at some point, I stopped listening.  And while I comprehend every word of what they've told me, and I've done a ton of research to make sure I'm educated enough to make important decisions on behalf of my daughter, I stopped trying along with them to guess what this baby would be like when she was born.  I finally said "I don't care anymore" after I was offered a second MRI.

Today I find myself at 36 weeks pregnant.  1 week and a day past any previous pregnancy, and 1 week until I'm officially full term.  I have dreamed of getting to this point, longed for it, and now, I'm not going to lie... I am terrified that it's almost here!  Maybe even more so than earlier on.  I have conjured up images of what this baby will look like when we meet her face to face - everything from the horrifying to the not so bad.  I have filed every ultrasound picture I've been given immediately away, and barely looked at any of them again.

Then yesterday... at my appointment I saw this on the screen:

And the only word I could think of in my head was.... PERFECT!
I didn't think of birth defects, or chromosomal conditions, I didn't hear the word trisomy, Turner Syndome, or flat profile, I didn't think about encephaloceles, enlarged hearts, hydrops, or small limbs.  I didn't even recall the moment I was asked after my 19 week ultrasound, "What do you want to do?"

I saw a baby's face... a nose that looks like her brother's... and perfect, and maybe even slightly chubby cheeks.

No matter what happens - whether we get a happy ending or a not so happy one - I know one thing.  My daughter is perfect,  and every agonizing minute of this journey has been 100% worth it.

Happy last week of pregnancy to me!

I have arrived at 32 weeks.  I'm tired, my hips ache as they pull apart to allow more room for this little girl to grow...and I'm starting to waddle.  But you know what?  I will not change one minute of it.  I am not supposed to be here, and the fact that I am far outweighs any of this.

Yesterday after walking around the zoo in the afternoon, we had to hike up a hill to get back to our car.  My legs felt horrible!  I wasn't even sure I would make it at one point, my pelvis felt like it was pulling apart.  I hate the fact that these are the same legs that carried me while I ran 3.1 miles twice last summer and fall.  I even mentioned to my husband it is hard to believe I once could do that. 

I've noticed a definite change in my belly this week.  Tomorrow is our first growth scan in 3 weeks.  At the last one the baby was a little smaller (6-8 oz) than most baby's her gestational age.  I'm really hoping she is growing well, because if she isn't I'm really not sure why I keep getting bigger!

This afternoon was an appointment with a neurosurgeon.  I can tell you what we found out was certainly not shocking... he does not know if this is or isn't an encephalocele.  He has reviewed both my MRI and previous ultrasounds, and cannot say that he see's a positive connection between the "mass" and the brain.  Its possible, but they just don't know.  Tell me something I don't know, right?  He did tell us that he is leaning less towards it being an encephalocele because again (not new news to us) the brain structure appears normal on both the ultrasound and MRI.  The only thing that appears abnormal is the structure itself, and some excess fluid that is surrounding the skull at the point of it. 

We've been told that it is unlikely an exam of the baby will even reveal what its true identity is, and the baby would require an MRI after birth.  Oh goody!  The only person in our family that would not have an MRI within this past year then is my husband.  Did I mention I have good hospital coverage, and pay co pays for visits, but MRI I pay for at much higher rate?  Nope... oh well... I do.  Goodbye savings account... I liked you while you lasted.

Beyond that, I asked... "well... if it isn't an encephalocele, then what is it?"  I was told that would be outside his specialty... ah yes... appreciate the honesty but once again thanks for the visit for non-answers.

I know no one knows the truth.  I understand the limits of science, but I don't want to take another half day off work, pay gas, parking, and co pays, to have another doctor to tell me what they don't know.

Another doctor appointment today.  Baby girl scored another 8 out of 8 on her biophysical profile, and I got to have my favorite ultrasound tech!  I had a blood pressure of 124/84... not too bad, not what I want it to be, but low enough to allow my doctor to remain relatively unconcerned about me for another week.

There really is no change with the baby, but today Dr. P told me that she feels like the remaining growth on the back of this baby's head/neck is really looking more and more like it is an encephalocele.  I write that word now without having to look up its spelling.  I really hate that I know how to spell it, and have visited the first 50 sites that come up if you google it.  Encephalocele is not something I ever wanted to know about!  Dr P's feelings are strong enough to have us meet with a pediatric neurosurgeon in the next couple of weeks - more words I don't want to know about or type.  If this is an encephalocele we are looking at what I'll refer to as "baby brain surgery" within the first couple of weeks/months of our daughter's life.  I spent a couple of months practically begging each night as I pray for the cystic hygroma to resolve, and it did... and revealed this!  Seriously?  I want to shout foul, but as I've seen in the past several months, healing does happen, right?

I wanted to give you some facts I've discovered through multiple sources about encephaloceles.  I'm hoping if anyone googles this and is having the same questions I do this will be helpful.  It will also help you guys to understand better what appears now to be going on with our little girl.  After reading some of these things, I sometimes long for the days of thinking this was a cystic hygroma... words I never thought I'd say

Encephaloceles are a neural tube defect which is basically a sac-like protrusion from a defect in the skull. These protrusions are filled with the membranes that surround the brain cavity and sometimes, brain matter as well.

Encephaloceles affect about 375 babies yearly in the United States.  Lucky me... and I can't seem to win the freaking lottery, but this?

20% of babies who have encephaloceles are stillborn.  Better odds I guess that we were first given.

The prognosis, depends on the type and amount of brain tissue involved, the encephalocele's location, other brain malformations.

Babies with an encephalocele stand a one in five chance at survival. 21% of babies with an encephalocele survive birth. Of those that are born alive, only half will survive.

Babies that have an encephalocele may also have other related issues including: 
-- Microcephaly (small head)
-- Ataxia (uncoordinated movements)
-- A 75% rate of some sort of developmental delay
-- Hydrocephalus
-- Paralysis of the arms and legs
-- Vision problems
-- Seizures
-- Slow growth

So... this appears to be more and more our new reality.

We asked today if our doctor is still thinking Turner Syndrome, and she is not.  The slate has been wiped clean.  The information I was given at my first appointment is no longer valid.  She is not aware of any known cases of Turner or Down syndrome that presented with encephalocele.  More and more we are looking at a very rare genetic defect, or an isolated birth defect, and yet she cannot find any genetic conditions that are standing out because our baby is lacking other dominant traits of each condition.  If you have to cheer for one over the other we've been told to cheer for isolated birth defect (somewhere along the way of this year I lost all naivety).

If the encephalocele can be successful repaired, and no other conditions are present with our baby, then she could live a normal life.

There are still so many what ifs...
What if it is an encephalocele?
What if its not?
What if its something else?

There is only one thing we are certain of... that there remains so much uncertainty, and we probably won't know the answer until sometime after our daughter is born.

I have been told I may be one of the strangest cases of cystic hygroma/encephalocele they have ever seen.  When my daughter and I show up in a medical journal someday, all I want is an autographed copy hanging on my wall.  I figure it will make a for an interesting item for her to bring to show and tell someday.

I'll be honest.  This past week dragged by!  First we had ungodly heat, then there was the blood pressure scare of last week's appointment, and the near daily blood pressure checks, bringing me finally to today.

Drum roll please.... 30 WEEKS!  There is a 3 in front of that number, people!  A 3... not a 1 or even a 2. 

I'm happy to report that my blood pressure has been steadily going down since last Thursday.  Readings in the last 2 days have been 119/76 and 114/72.  I have my weekly doctor appointment tomorrow, so we'll see how my blood pressure compares there.

And now, since the heat wave has passed, we've been able to get out walking again in the evenings.  I hope this will have a positive effect on my blood pressure, but it definitely does NOT feel very comfortable to me anymore.  Lots of pressure and pulling sensations in my hips and legs, and the other night I had round ligament pain for about 6 blocks.  I almost thought for a minute I'd have to have my husband walk home, get the car, and come pick me up!

Last night my son woke up wet in the middle of the night.  I changed his sheets, and laid awake for over an hour before I could finally fall back asleep again.  When I finally fell back asleep, it was only a half hour or so before my alarm sounded, but during that half hour, I had a dream.  I had a dream where Dr. P was delivering my baby.  They took the baby away, but brought her back to me.  She was beautiful, she was perfect, and the Dr. told me that the growth on the back of the head/neck was NOT an encephalocele.  They told me there weren't any other tests they needed to run and we could take her home.  It was the best dream I've ever had, but boy was I disappointed when I woke up and found it wasn't real. 

I don't believe much in the significance of dreams - otherwise I would have been captured a hundred times over by bad guys, fell off of numerous cliffs, and had monsters that chased me down every street.  I think I had the dream because I desire this in the depths of my heart, not because of some prediction I see happening.  Regardless, I can't help but hope there is some truth to what I saw.

I cannot leave this post without sharing my sweet "L"s almost 4 year old pictures that we had taken this past weekend.  Despite of the horribleness of this pregnancy, one hug from this boy certainly reminds me every single day that I am blessed.  My pregnancy with him was far from perfect, his birth was scary, and the 27 days he spent in the hospital were painful... but in the end, I think he was definitely worth it!

Guess who is going to be trekking to CVS or Walmart for daily blood pressure checks?  Yep... yours truly!  I'm not about to spend only a couple of weeks with my beloved first trimester, so I guess I better figure out a way to get it down!
Every time I have a doctor's appointment I get myself so worked up.  This morning was no exception.  I was feeling especially anxious given the revealing of the possible encephalocele last week.  I also feel as we get closer the "when will I go to the doctor, and not come home, but go straight to the hospital" feeling.  I have a lot of anxiety surrounding that as a result of my previous pregnancy.

The good news is baby girl passed her biophysical profile today with flying colors.  The ultrasound tech gave her an 8 out of 8.  BPP measure 4 things - amniotic fluid, gross motor movements, fine motor movements (muscle tone), and breathing.  Baby girl did all things perfectly - she of course is like her mama - and even moved from a transverse (cross ways position) to head down during my ultrasound, which caused the tech to take about a 2 minute break, while we all watched her go nuts on the screen!  I also had her growth checked today and while she isn't growing as normally as a "normal" baby would she is growing compared to herself.  Overall I am measuring at about 28 ish weeks, and I'm 29.  Baby girl is about 2-1/2 pounds.

The not so good news... because there ALWAYS has to be some, is that I unfortunately did not fair so well.  I have pre-hypertension.  My first blood pressure was 138/86.  Clinical hypertension is 140/90.  I was told that when they took it again, and if it was that high, they would start running my labs.  Not how I wanted to spend my day.  The second time they took it, I thought happy thoughts of Hawaiian beaches and I was able to get it down to 133/79.  I'm still unhappy with the top number, which is up 18 points from last week, but the bottom number is actually a little lower than last week.  I have to take my blood pressure daily, and call my numbers in tomorrow and Tuesday.  I see the doctor again next Thursday. 

I really, really need a couple more weeks before this starts creeping up.  I didn't have any protein in my urine, so it could just be an isolated incident.  If no preeclampsia signs follow and it stays higher than normal, they would just put me on blood pressure meds, according to the doctor. 

True confession time - I did eat a lot of potato chips, it has been ungodly hot here, AND I haven't walked in over a week.  So now, I need to stop eating potato chips and start walking, right?  The heat is out of my control.  I told the doctor and nurse to STOP stressing me out so much.  Jeez, you'd expect with a pregnancy this stressful, that it might be even higher!

Another doctor appointment today... another look at baby girl.  Another set of surprises, that very vividly illustrate that I am NOT in control of any of this. 

I guess I'll say there is obvious good news, and then there is what I'll call new news at this point. 

In the good news department is that my vitals remain stable.  My blood pressure was 115/81, and everything else with me seems normal for a 28 week pregnant woman.  My doctor actually said her feet have more swelling in them than mine do!  At this point forward, I will be on weekly appointments, as she wants to continue watching me closely.

The other very good news, is that the hygroma has finally shrunk!  After staying exactly the same for 9 weeks, the fluid filled portions have almost entirely disappeared into just some extra skin hanging around the neck!  This is great and surprising news for us and our doctor.  I have prayed - and I know I'm not the only one - every single night for this to happen, and it finally has.  I wish I felt more elation in this, but it is tempered by the new discovery today.

The shrinkage of the hygroma has now revealed something that was underneath it – a projection off the back of the baby’s neck that appears to be some sort of soft tissue, versus an empty space that was fluid-filled.  My doctor is a little mystified as to this new discovery.  This is not a normal presentation of a cystic hygroma.  It is possible that this is what is called an encephalocele – which is a rare disorder in which the bones of the skull do not close completely, creating a gap through which cerebral spinal fluid, brain tissue and the membrane that covers the brain can protrude into a sac-like formation. This is a very serious condition, that often does not come with a good prognosis – both short and long term. As with everything we’ve been told before, babies with encephalocele have a high rate of inutero death - what's new, right?   However, our doctor is puzzled as the baby’s brain appears very normal, and has since the beginning, and the cerebellum which is at the back of the brain right next to this protrusion is “perfectly formed” (her words not mine). Many times with an encephalocele the brain tissues would show defect or compromise.  There are encephaloceles that contain only brain fluid versus both fluid and brain matter.  Those do have a better prognosis.  Of course it may not be an encephalocele at all, and just may be some sort of excess tissue.  Right now the baby is in a position that makes it impossible to know if this is actually an encephalocele. We may get more information at our next appointment, or we may not know anything else until birth.