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!

I've been hit fairly hard in the past week with what I'll refer to as nesting.  As much as I'd like to fight it, and as tired as I'm feeling, I have this insane urge to clean and organize... and not really things that NEED to be cleaned and organized - i.e. those in plain view - but instead cupboards and basements, and other areas that are out of view.  I've also been a bit freaked out about not really "being ready" for this baby.  Now, I'm not sure what "being ready" even means.  I've asked Dr. P what I should prepare for as far as bringing a baby home or not, and she kind of just shakes her head and tells me she doesn't have a good answer. 
I'm stuck in that stupid place of limbo, where I can't plan once again.  I guess this baby will have a place to sleep at least, and we have some blankets from "L" and probably a week's worth of newborn clothes.  Diapers can always be purchased as needed at the last minute, right?  I still have to dig my breast pump out of the basement somewhere, but I'll find that soon... I hope.  I don't want to plan too much, because the thought of having to deal with the aftermath if something horrible happens - which in all honesty is really still the more statistically significant scenario (although long ago I decided that I don't do statistics) - is too much for me.  At the same time, I don't want to plan too little either, otherwise I'll be stuck without some basic things we need.  Sorry... but all of this really just downright sucks - how poetic, I know, but I can't think of better words right now.

Sunday was no exception to the nesting bug.  I found myself rather suddenly in the mist of cleaning out the corner cupboard in our kitchen.  This is a cupboard that I'll lovingly refer to as a "junk cupboard".  Yes... I have a junk drawer too.  I guess I just have a lot of junk.  If we are actually going to eventually bring a baby home to live here, I need more space for things like bottles and breast milk containers.  So it before increasingly clear to me that I needed to clean the junk cupboard - STAT!

As I sat in the middle of the hard floor 7 months pregnant, I started thinking about the inevitable mess that this new baby would bring upon our house.  We have trucks and trains and books and games already piled high in our living room.  I closed my eyes for a minute and envisioned dolls and little strollers and Polly pockets and whatever else little girls play with - please excuse this mom of a boy's inadequacy in this area.  I envisioned what a giant mess it would all be trying to contain the "needs" of 2 children of opposite sexes, born 4 years apart.  A mandatory trip to IKEA jumped into my mind for a minute, and then you know what?  I felt a huge smile come over my face.

All I could manage to think in that moment was - BRING ON THE MESS!  I'd love to blessed by the messes this baby might bring.  Lord knows she has brought enough "mess" into our otherwise somewhat formerly orderly lives already!

Another week is here... another Monday - the last Monday of July!  Part of me hates Monday, but part of me knows it is another week closer to finally having this pregnancy over with - no I AM NOT wishing for an early end... believe me, but I am wishing for the weeks to go by quickly, as I really need some closure - which I also realize I may never get, depending on the outcome.

Anyways... that's not why I'm writing.  I'm writing because its Monday and that means here's my menu for this week!

Dilled Chicken Fricasse - Recipe Below
Pioneer Woman's meatloaf - lightened, Baked Potatoes
BLTs - except pregnancy makes me hate lettuce, so we do BATs - Bacon, Avocado, Tomato
Pancakes with blueberries
Spaghetti w/Tomato Sauce
Pita Pizzas - never got to these last week - with turkey pepperoni

Also... in response to the question about  making chicken fajitas on the grill.  Here's my method.  Season chicken breasts however you like and grill just like any other chicken.  Cut up various color peppers and onion (I use red onion) and divide among several pieces of tin foil - roll up the edges.  Place on grill for around 10 minutes, flip and keep on for about 10 minutes more.  Cut up chicken into strips once its off the grill, serve chicken and veggies with all the fixin's on tortillas.

Dilled Chicken Fricasse
Serves 4 at 8 Points Plus each
My mom's recipe - a must make if you have fresh green beans and dill - we had both from our garden this weekend.  To me this tastes like a chicken, potatoes, and gravy Sunday meal all done in one pan.  My husband doesn't like green beans and he loved this!

Mix together in a pie plate:
1/3 cup flour
1 tsp salt
1/2 tsp paprika

4 (4 oz each) chicken breasts - 1 pound total
1 Tbsp olive oil
coat chicken breasts - both sides - in flour mixture and cook in oil 3 minutes per side - until golden brown on each side.

2 cups of chicken broth
4 Tbsp fresh dill, divided
10 new baby potatoes
1 Tbsp lemon juice
2 cups fresh green beans

Add broth to hot pan, along with the remaining flour mixture, and 2 Tbsp of the dill.  Stir well, and bring to a boil.  Add the potatoes, simmer covered for 10 minutes.  Add the green beans, cover again, and cook another 10 minutes.  Add in remaining 2 Tbsp of dill and the lemon juice.

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!

It’s my last week in the 20s! Yes, I certainly wish I was that young in age, but I’m talking about baby girl’s gestational age. It has now been 10 weeks since our fateful diagnosis. I am 29 weeks today, and next week I will be in the 30s. Some days I have a hard time believing that I have made it this far.


I am on weekly appointments now, which is seriously exhausting. Those appointments take everything out of me! I have another appointment tomorrow already. Tomorrow I see a different doctor as Dr. P is on hospital rotation this week. I think she’s on every 6 weeks… its possible she could deliver this baby. I know she probably wants to. I think she wants to see exactly what this baby looks like. Technology is amazing, but as we’ve seen, it cannot tell the full story. The womb is still an amazing place for this one to hide what might be going on. I know her scientific mind is probably going crazy over this case. I know she quietly, desperately wishes I had the amnio. And even though I think she is an amazing doctor, I sometimes take satisfaction in showing my absolute content in the fact that I didn’t. I want to think she admires my ability to accept the situation, and not need to know more right now, but maybe quietly she just thinks I’m nuts.

Some days I feel like I should probably get my own medical journal. The hospital where I will eventually deliver is a teaching hospital. I have this scenario that plays in my mind that looks a little bit like an episode of Grey’s Anatomy – where all the doctors are fighting over who gets to follow my case because it is the freaky ones that they all like.

Overall as I’ve started my third trimester, even though I think I still look pretty good, have really no swelling to speak of (hello beautiful foot and ankle bones), and seem to function somewhat normally most days, I feel tired… really, really tired. I’ve also started with a little nausea and heartburn again, and gagging on my toothbrush! I think some of it is just the toll of the overall stress and uncertainty of this pregnancy on my mind, soul, and body.

Reading this on incourage today, really got me thinking about plans.  The author, Sara Frankl, says in the article that, "The truth is that if you are still breathing, He still has plans for you..."  I woke up this morning, and was still breathing, despite the oppressive humidity.  And my sweet baby girl - who is ALMOST 29 weeks - was still kicking.  As I read those words, and they hit me smack between my dry and tired eyeballs!

Here's the thing about HIS plans.  I really don't want to accept them.  I am tired of the "I'm sure there are great plans for this baby", or "God always has a plan".  What about my plans?

My plan to lose weight, and have an amazing perfect pregnancy because of it.
My plan to know what it is finally like to take a baby home from the hospital a few days after its born.
My plan to breastfeed normally instead of having an almost illicit affair with a breast pump.
My plan to buy lots and lots of cute pink clothes, and finally get to buy one of those gorgeous little girl Christmas dresses.
My plan to give "L" a sister than he can love, run, jump, and play with.

What about those plans?  Doesn't anyone, including God, care about my plans?  I have been waiting for over 6 years now for any of this to work out easily.  I have done everything I could to control the situation - including losing 115 pounds!  I did everything ever asked or required of me to make sure MY PLANS came to fruition.

And in the end?  I find out I'm not in control.  I was never in control.  Talk about frustration!
Once upon a time, I had some plans - I wanted a baby.  But first I suffered through a miscarriage and infertility.  Then when I thought I had it all under control, I almost lost my life the night my son was born to a rare disorder that strikes about .2% of pregnancies.  In the months that followed I could not understand the why of it all.  It was all so unfair and traumatic  But... 3 years ago from that moment I knew exactly why it happened.  I knew that his plans were bigger and better than my plans.  I was humbled.
I heard someone say today "God doesn't always give us what we want, he gives us what we need." 
I'm not sure what he thinks I need right now.  I feel like I need a good appointment, no more bad news, and to have a perfect baby like 99.9% of everyone else seems to, but maybe that is just more what I want.  I do know that the night my son was born, I didn't know what I needed then either. 

This is not what I want.  These are not my plans.  I don't like it.  I don't understand it.  I certainly hope someday I will.

I know its been a few weeks since I shared a weekly menu.  I'm starting to feel some nasty pregnancy heartburn and a little nausea (again), so sometimes I just don't feel like meal planning and meal making, let alone sharing our menu.  But this week I think I did a good job.
It is supposed to be insanely hot and humid here this week - actual temps in the high 90s, heat indexes 105-115, and a intense heat warning or something crazy I've never heard of here in Minnesota before. I've tried to keep to grilled meals - sorry to the hubby who has to venture out to grill - or things that can cook quickly on the stove top.

-- Chicken Fajitas on the Grill - Homemade Pico and Guacamole - we had this on Saturday already and it was amazing.
-- Spicy Ramen Pesto Pasta - Recipe below
-- Apple Gouda Chicken Sausages with Caprese Pasta Salad (except I didn't have any mozzarella so I subbed smoked Gouda and wow that was yummy) and Sun Chips
-- Pita Pizzas
-- Curry Chicken Casserole
-- Sweet and Sour Pork and Rice (I don't fry the pork)

Spicy Ramen Pesto Pasta
Serves 6 @ 8 Points Plus each
1 package morningstar farms soy crumbles
1 cup shredded carrot
1/4 cup chopped green onion
2 packages ramen - prepared without the soup packet and drained
1/2 cup pesto
1 cup water
2 Tbsp cornstarch
2 Tbsp garlic chili sauce (get the Asian section of any grocery store)

Saute crumbles, carrot, and onion.  Add in cooked and drained ramen.  In a separate bowl mix together pesto, water, cornstarch, and garlic chili sauce and pour over soy/ramen mixture.  Bring to a boil, stir and remove from the heat.

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.   

28 weeks!

Back in late February I set out to create myself a new blog look, and then I was derailed... by this.

Then 2 months ago exactly today - or 9 weeks, but who's counting, right?  I was even more derailed by this.

My world has changed... and my blogging has changed.  I cannot thank you enough for sticking by me and reading my sometimes rambling thoughts and sending your prayers and encouragement daily.  It is amazing to me that going from writing about health, weight loss, and running to writing mostly about both my physical and emotional struggles with a difficult pregnancy that I have only lost a couple of followers.  And... I've gained a bunch more!  I am grateful that you keep reading and keep sending your comments.  I read and cherish every single one of them - OK except maybe the one I once got about being anorexic - but that only made me laugh.

So... I am pleased to present to you a new, streamlined look for www.fatlittlelegs.com  I hope you like it!
If you read my posts in email or through an RSS reader make sure to click over to my blog today and check it out.  I'd love to know what you think!

I’d like to share something that’s been on my heart. Please be assured that this is NOT targeted at any one person. This is just a commentary on things I hear day after day after day, that are wearing on my soul. This post is for me, it is not for you. I know that people’s comments, whether in real life, on facebook, blog comments, or email are meant to encourage. I really do. I am trying to look at the intent of people’s comments versus the content, but after enduring this now for a couple of months, I feel I need to address two common misconceptions I hear when people find out about our pregnancy situation. This post will be a two-parter – this is the first part. I am certainly not a theologian, so take this as my junior interpretation of what is probably the most controversial book in history.

I often receive comments from people (and I’m not just talking blog comments here) that “God will not give you more than you can handle.”   Honestly, I don't find this helpful… or even beyond that it isn’t even TRUE!

I personally didn’t think I’d ever read that in the Bible. So… I visited my trusty friend, Google, and looked it up. What I found was that this is one of the most misquoted verses in the Bible. The actual verse that people are thinking of is this:

“No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.”
I Corinthians 10:13

Nope… not the same meaning! I had often thought that maybe the opposite was true – that we are purposefully given more than we can handle, so we can both grow and turn to God. Thanks to this great blog article, I found this like-minded thinker, and this verse:

“For we do not want you to be ignorant, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead.”
2 Corinthians 1:8-9

So… God might give us more than we can handle.

From a place of deep honesty, right now, God has given me WAY more than I, Sarah, can handle. I admit it. I am powerless, I am weak. I’m on the verge of a break down every day. I can’t even begin to think a month into the future, because I break down! I can’t begin to imagine how I will endure if this baby dies, and also if this baby lives. In all reality, it appears that we are going to be put through a ringer of hospital stays and surgeries in the coming year, maybe even YEARS. I have a full time job, I have bills to pay, and I have a 3 year old that needs me too. I can’t handle this… it is too much for me to bear. But every day I make it through somehow. Every day, I know that hundreds of people are lifting me and my family up in prayer. Many of you I don’t even know, but know this – some days it is those prayers that are the ONLY things that I know must be carrying me, because I certainly am NOT carrying myself.

So…God gives us way more than we can handle sometimes, but he is faithful to carry us through. That is a truth I believe.

I really want to sit down and blog.  I have so many thoughts racing through my head that I toss and turn a lot of nights - so I'm not sleeping well... AGAIN!  Then after a horrible night of sleep, I am exhausted at the end of each day.  I can't help but thinking of ongoing surgeries for this baby and persisting through them while still trying to make life as normal as possible for "L" and trying to work!  And the medical bills that are likely to follow constantly haunt my mind.  I need to plan.  I can't.  I've said it before, but this is driving me ABSOLUTELY NUTS!!!

On top of that, I have things I want to say.  Things I know that will not seem popular or might even offend some.  I start to write about it... and then I stop.  But I think I've decided finally I have to write about what my feelings are.  This is my space, this is my blog.  I guess if I offend someone that is par for the course.

My MRI "results" were emailed to me on Friday.  I tried reading them.  That was probably a huge mistake, as I seriously - even with a bachelor's degree - cannot understand 98% of what it means.  I can tell you that female genitalia was confirmed.  That is one sentence I understood.  Along with the mass is complex consisting of 3 components.  Seriously... that's it.  Everything else is full of major medical terms, and googling them was not the wisest idea, and really didn't add to my knowledge anyways.  So... I will await patiently to speak with my doctor about them on Thursday at my appointment.

I've been eating WAY too much again.  But honestly, I am so hungry.  Like tonight, I felt like I needed a another dinner a mere 2 hours after my dinner of roasted sweet potatoes and steak.  What?  I have packed on 5 pounds already since my last appointment (thanks cheesecake) and I'm terrified to step on that scale on Thursday.  Let's just hope its all baby growing (although the cheesecake really tells me otherwise).

27 weeks… 1 more week until 28 - my second goal!
Yesterday was a BIG day for appointments.  I spent 8:30 am to 1:00 pm at the hospital for tests.  First, I had a fetal MRI.  This is where they put ME in a scary and super tiny MRI machine for about 80 minutes, and do a bunch of scans of the baby.  The purpose of this test was to have very detailed pictures showing the structure of the cystic hygroma on the back of our baby's neck/head.  These pictures will then be given to pediatric surgeons, who will begin the planning for the surgeries our daughter will need after birth.  Yes... surgerIES.  We are told it will likely take multiple surgeries to remove the hygroma, depending on its structure and interconnection with blood vessels, etc.  This is not a test to let us know what is wrong with the baby, but simply another piece of the puzzle so doctors can help her in the future.  We will likely begin meeting with the surgeons in the next couple of weeks.

I have to say that after spending almost 80 minutes in the MRI machine all I could think of was hilariously:  "Thank God I am not as fat as I used to be!"  That thing is tiny, and 100 pounds ago I have no clue how I would have fit.  At least it distracted me somewhat from the close quarters and hammering and car alarms sounds that were coming from all around me.

After the MRI, we had a follow up echo cardiogram.  At our first they found a small heart defect called a VSD in the baby, and could not see the aortic arch, which is one of the key things they wanted to see.  The cardiologist could not find the VSD this time, and they still couldn't see the aortic arch very clearly (we are told it is very hard to image in utero), but they were able to trace blood flow through it and it appeared normal.  The VSD could have possibly closed or it is just harder to see.  Apparently, it gets harder the further along you get.  The conclusion was that the baby would need to have an echo cardiogram 24-48 hours after birth.  The cardiologist told us "not to worry about it." Ah... OK, easier said than done, but the heart seems to be the least of our worries in the whole scheme of things.

Overall things continue to be stable, and we are grateful for that.

Overall my health is still pretty good.  My cold symptoms have eased up, although I still have a sporadic nasty cough.  My blood pressure is a bit higher than I'd like, but it is still normal.  I have really little if any swelling.  I've gained a total of 27 pounds.  The baby is measuring close to normal overall, and she is kick, kick, kicking away!  Her patterns have become much more regular and I feel her more often than I have in previous weeks.  It is very comforting to feel her punches to my bladder, even if it results in - at 34 years old - me peeing my pants.  I'd like to think the punches mean she is training to punch my doctor (Sorry Dr. P)  as she is delivered for giving her such a grim prognosis only 8 short weeks ago.  That's my girl! 

Happy Belated Independence Day!  We were so incredibly busy having fun and soaking in the sun over the past 3 days that I totally forgot to blog! 
My weekend?  Amazing!  The weather was perfect, we saw a parade, and "L" and I made this:

Its this recipe... Yes it was a ton of work, but amazingly delicious, and no it is probably something you don't want to know the Points Plus values for.
This weekend I took the time to celebrate my freedom.  Freedom from what?
-- From constantly thinking about the issues with my pregnancy and our baby girl, and just loving life for a few days - eating BBQ ribs, watching a parade, roasting smores, and running in the sprinkler
-- From thinking about food constantly (yes I know I get a pass this year as I'm pregnant), and just trying to be conscious about portions, making sure what I am eating is fresh (see above cheesecake, no artificial ingredients there), tastes amazing, and is always in moderation!
-- Guilt (mommy guilt, food guilt, weight guilt, not writing on blog guilt).

I also thank God I live in a country that allows me to express my opinions and live my life the way I want to live it!  Happy Birthday USA!

At the same time I celebrated my 13th wedding anniversary yesterday.  13 years ago on July 4, 1998 I married my best friend.  When you say wedding vows there is usually something in there about for better and for worse.  Well... there have been lots of "betters", but in the past several years, we seem to have had our share of "worsts".  During the betters, life is easy, marriage is easy.  Thinking about it, I am certainly glad though that through the worsts I have my husband by my side.  I cannot imagine doing any of this without him, or with someone else.  Hopefully in the near future we'll be able to enjoy the betters together once again.

I'm glad so many of you liked my Happy Crappy Pregnancy Cake.  Yes, of course I ate some, but of course, I didn't eat it all.  It was quite delicious!
So... the doctor's appointment on Thursday- It would never be quite complete without a little drama, right?  First, I got there and I had no appointment on the book... interesting, because in the folder where I've organized all my "pregnancy stuff" I had an appointment card with 6/30 2:15 pm written on it.  During my last appointment, the office was having a super busy/disorganized day due to a few emergencies, and someone wrote my card, but forgot to write down my appointment in the book.  Big sigh!  They knew they had to "fit me in" though, and really those are NEVER the words you want to hear, because you just know you'll be waiting.  I'll spare you the details of the wait, but let's just say that at one point my husband was pretending to juggle with imaginary objects due to his boredom.  Finally I started my 2:15 pm appointment at 4:00 pm.  What happened next stunned me though... I was given a coffee gift card for my trouble.  What?  At a doctor's office?  I was shocked! 

I am happy to report that my blood pressure was down to 125/78, from 128/85.  YAY!  My ultrasound showed the baby measuring overall 25 weeks and 5 days - I was 26 weeks and 1 day at the time... not bad at all!  The head/tummy are still overall measuring normal and the limbs measuring 1-2 weeks behind.  The femur (thigh) measurement was actually only 1 week behind this time, so that one caught up a little.  Overall the baby is around 1-3/4 pounds!

The small rim of fluid remains around the heart.  My doctor categorizes it as on the threshold of being non-significant.  I guess everyone has just a little fluid around the heart, and this is just a tiny bit more than normal.  There is no excess fluid anywhere else, kidneys are working, amniotic fluid is normal. 

My doctor likes to often do her own ultrasound after the initial one.  This time she came in, found the baby's heart on the ultrasound, and started just staring at it.  I could have sworn 5 minutes past, and she didn't say a thing during that whole time.  She was just taking pictures and staring at the heart.  Then she started doing the same thing with the baby's head.  You know THAT SILENCE... the one that is so big and so long that it almost hurts you?  Yeah... it was like that.  I wanted to yell out, "What's wrong?"  but I managed to keep my cool.

She told us that overall the baby really remains unchanged and stable.  The hygroma is not growing, but is not shrinking.  Today she could not convince herself that the VSD heart defect was still there.  She didn't see it, but couldn't rule it out either.  It is not uncommon for the small VSDs to heal in utero.  I really hope it is gone!  We will find out more on Tuesday at our second echo cardiogram. 

She also told us that she is seeing something new though... why, why can't we just be free of these new discoveries for just one appointment?  The baby's head is tapering slightly on one end.  She said it could definitely be normal and just familial - given my son's strange journey with his prolonged open fontanel this is not shocking to us.  It could also be another marker of some sort of genetic or chromosomal condition (which is still highly suspected in our baby girl), or it is even possible that the skull bones have started fusing too quickly in the baby (not something you want to happen).  Right now she is not immediately concerned, because it just showed up at 26 weeks - some of the more serious conditions would have shown prior to this.  It is just another thing to put on the "watch list."  She did find "L"'s fontanel condition significant to this finding, so we are going with familial right now.  Did we trade a heart condition for a head condition?  I guess that is TBD at this point.

I know she is still shocked to see me pregnant at 26 weeks... and even while I feel satisfaction in that, I am still so incredibly fearful of the uncertain future. 

Tuesday starts the rounds of tests - MRI and another echo - that will start to give the surgeons the information they would need to treat our baby once she is born.  We will be meeting with them in the coming weeks to discuss how this may play out.  I hope and pray they have the wisdom to know what to do, and for me the patience and peace to endure it all!

Next ultrasound in 2 weeks... Next stop 28 weeks!