The spot is gone!
Lily came through surgery beautifully, and we were home by noon yesterday!  God is so good!

I'd be lying if I didn't admit to having a bit too much fear gripping me yesterday between about 7:30-9:00 am.  I started out so calm, I stood beside her during all of the pre-op preparation.  I signed her life away on the release form, and a nurse held out her hands for my baby.  It all happened so fast, and there they were walking down the hall to the OR with her, and I saw her waving and smiling the whole way, giving doctors and nurses "five".  That was the last time I would see the spot.  The last night I would see my daughter exactly as she was born.

The surgery was projected to take around an hour.  About an hour and 15 minutes in, I suddenly felt like I was going to lose the muffin I had just eaten.  I had about a thousand thoughts rushing through my mind, all of the "what ifs", a lump in my throat, I looked at my husband with fear, and said, "What do you think is wrong?"  Luckily, it was only about 5 minutes of pure panic, until the receptionist came over to me, and said they were in the process of closing up, and the surgeon would be out to speak with us shortly.  It was enough of an update to get me through the next 15 minutes or so, without completely losing it. 

Lily's surgeon was a kind man.  He assured us everything went great.  I had to ask him the question, I so desperately wanted to know.  I asked, "What was it?"  He assured me it was indeed exactly what many doctors before told me it was, simply fat, skin, and tissue that had collected as part of her hygroma.  Likely left when it ruptured around 28 weeks.  He told us that we'd be allowed in recovery in about 10 minutes, and just like that it was pretty much over with.

I breathed for what seemed like the first time that morning.

We waited another 10 minutes or so until we were ushered back to see her.  She lay on the bed all hooked up to wires and an IV.  The nurse introduced himself and said that I could hold her.  I sat down and he handed her to me, and what I saw next amazed me:  the back of my daughter's head, not beautiful and perfect like I had imagined so many times in my head it would look like when the spot was gone, but horrible, and scarred, and bloody, and huge!  The incision ran from the middle of her neck, to the middle of the back of her head, it was oozing puss and blood, it was big- probably 5+ inches long.  I felt my breath catch.  This... this is not what I expected to see.  Even though I knew my daughter was having a large spot removed off the back of her head, I had somehow blocked out the reality of how that would look, and replaced it with an unrealistic image of beauty.

There were a few moments in that recovery room yesterday that I regretted all of it - that I wished I could get that spot back.  That I longed for my baby to be perfect, to be whole, to look less like Frankenstein and more like the Gerber baby.

I know the spot had to go, and I hope and pray that the scar that remains will heal and fade with time - that it will eventually be covered by gorgeous locks of hair! 

We are told that because of the size of the incision she will likely need to have a "revision" done to the scar in the next 6 months to a year.  The skin needed to be stretched just a little too far, and the middle of the scar will eventually pull apart a little too much.  The surgeon will need to cut the old scar out, and create a new smaller scar.

I wanted to be able to move on after yesterday - to put this all behind me.  I was unable to do that fully.  Sure, the back of my daughter's head looks a bit like Frankenstein, but today it has grown on me a little. 

Despite it all I still know that "there are far, far better things ahead than any we leave behind." - C.S. Lewis.  Why?  Because I am a child of God, Lily is a child of God, and as he's proven over and over again, he knows what he's doing, even if I don't.

I guess it's time to finally tell you that my baby girl is going under the knife first thing on Wednesday morning to have this removed from the back of her head.


Yes... I bet you didn't know that was even there, did you? I've always shared photos of her smile, but not of this, and yet it has been so much a part of who she is for the last 11 months.

This is what is left of her cystic hygroma. This is where they thought her brain was bulging out of her skull.   This is the spot that was viewed on ultrasound 27 times before she was even born.  And this, as far as I'm concerned is the very spot where God healed her.  Physical evidence of the miracle we were granted.  Physical evidence of the immensity of the power and grace... and healing of God.

We've been told more times than I can now remember by doctors, nurses, and other medical professionals that no one has ever seen anything like it.  At first I wondered why... what is it?  What is it there for?  But now I am convinced why no one has ever seen anything like it.  Because babies that have a cystic hygroma so big and so complex as Lily's are not born alive to be seen with it. 

Like I said, the very spot that God chose to heal our Lily.  A spot that has represented for the last 11 months what an amazing answer to pray my daughter is. 

Sometimes we are asked questions.  They usually go something like this:
What is it made of?  Fat and skin we are told. 
Does it hurt her?  Nope.
What is it?  We don't really know.  The best guess is a leftover remanent of her cystic hygroma, and where it pushed against her neck/head as it grew and she grew.

Initially I wasn't used to the stares.  I actually preferred the questions.  It's why I love kids... they are so raw and honest.  I remember the first time that one of my son's friends approached us to ask about it.  It was at the Thanksgiving feast at his daycare.  "What is that?", he blurted out.  I told him it was just an extra spot that she was born with.  Next he asked, "Does it hurt?"  I quickly told him no, and he simply looked and me and said, "OK," and continued eating his mashed potatoes!  He asked his questions, and moved on, as if it was no big deal.  I wish adults could act that way sometimes.

Finally I got used to the stares.  I remember when I used to make sure her head was always facing the back of my arm, so no one would see.  At some point, I gave that up, and scolded myself inwardly for being critical of my own daughter.  She is who she is, and she is a miracle.  If people ask me these days, I simply tell them "Its just the way God made her." 

Over the last 11 months I've sort of become attached to the spot.  The miracle spot.  After Wednesday, it will be strange to find a Lily without her spot.  It is so much a part of who she is.  I've come to realize that I will actually grieve the spot when it is gone.  I know... that sounds so strange, but imagine your child being born with something, living with it for 11 months and then having it taken away within a couple of hours... maybe you can't imagine, and my fingers can't quite find the words right now that I'm looking for.

I know by having it removed though that we are doing the best thing for Lily's future.
Her hair will eventually grow long enough to cover the spot, and just like that the physical evidence of it will be gone. 

I however, will raise my daughter to know about her spot, and to remember what it represents - what it stands for - the miracle of life and the power of God.

Please pray for us this week as our daughter undergoes surgery.  Pray for peace for us, the skill of the surgeon, and healing for Lily.

Goodbye spot... we will miss you!

Today I have the pleasure of sharing another guest post with you.  Dana, the mom of Caroline from the Our Beautiful Butterflies post, shares with us her experience through the 7 states of grief.  Dana has her own blog over at http://aubreyjane.com Please check it out!

Traveling Through Grief

I am reminded every day that my daughter is a miracle. Everyday I am reminded of all that we have been through in these past 23 months. Everyday I am reminded of the journey that I have taken over these past months to travel through grief and see the miracle in my presence.

I believe that many special needs parents go through the 7 stages of grief. Unfortunately, I don’t believe that we all talk about it or like to admit it. My journey through grief started when I was 9 weeks pregnant and a cystic hygroma was detected, doom and gloom prognosis was given, an amnio was denied by us, and a healthy baby girl with TS blessed and changed our lives forever.

1. SHOCK & DENIAL
Shock is exactly how I would explain that sunny April day in 2010. It was just a random ultrasound because of some cramping I had been experiencing. I took my 14 month old daughter with me to the appointment. I phoned my husband and told him I would bring him a soda when I was done with the appointment. He was having an awful day at work and I thought the soda would brighten his day. At the appointment my 14 month old waited patiently as the tech explained what she saw. Honestly, I don’t even remember the diagnosis of a cystic hygroma. I just remember them telling me something was seriously wrong and that I needed to do the 1^st trimester screening in two weeks. That whole appointment is so etched in my brain, but yet so foggy. I took my ultrasound picture, got my husband a soda, and tried my best to hold it all together as I met my husband. Needless to say, this was one of the hardest days of our 9 years of marriage. When you are pregnant, you never expect that you will be that minority of parents who get life changing news, yet here we were. We were shocked and so emotionally drained.

2. PAIN & GUILT-
The following day I received my Baby Beats heartbeat monitor that I had ordered the week before. Receiving that monitor was like a knife in my heart. Instead of listening to my baby grow, I felt like I would be listening to see if my baby had stopped growing. The following two weeks were just so hard. I found forums that had a positive vibe, but there were still so many unknowns that nothing really helped to ease the pain. I felt like I was being punished for wanting to peak at my baby via the ultrasound. I know it is not rational, but I thought that if I would have waited until the 20 week ultrasound, there would not have been bad news and my baby would have been perfect. I know that sounds silly.

3. ANGER & BARGAINING-
To say I was not angry would be a lie. I had suffered a miscarriage before the birth of my first daughter, so I understood the grief that is felt after losing a pregnancy. I was so angry that I had such a high probability of going through something similar, but also so much harder and difficult to bear. I had been told that I had a 90% chance of having a miscarriage before 24 weeks. The “why me” was running through my head daily.

4. "DEPRESSION", REFLECTION, LONELINESS-
Looking back I would say I was depressed. I had a hard time being around other pregnant friends. My friends had very close due dates and one was actually due on the same day as me. I constantly wondered how November would look. I thought about how seeing friends’ babies would be a reminder of us not having our baby. I tried my best to not let these feelings be known. I would make things seem better than what they were. Who wants to be around a depressed person?  I became an expert at hiding my emotions and sugar coating feelings.

5. THE UPWARD TURN-
At 19 weeks I was scheduled to have an amnio. Before the amnio, the perinatologist did a scan of our daughter’s neck and discovered that the cystic hygroma had resolved. We were overjoyed and decided to decline the amnio. At 24 weeks her heart echo came back great with no seen heart abnormalities. On the way home from the appointment, I stopped and purchased my little fighter her very first outfit. Yes, I have another little girl and plenty of clothes, but this outfit represented the hope and faith I had about making it to November and delivering a healthy baby girl. I finally felt hopeful.

6. RECONSTRUCTION & WORKING THROUGH-
I wish I could say that my mind never went to the “what-if’s”, but it did. I tried to prepare the best I could, but I don’t think one can really prepare for something you have no clue how to handle.

7. ACCEPTANCE & HOPE-
November 11^th, 2010 came and so did a beautiful baby girl. Soon after birth she was diagnosed with Turner Syndrome. She had the classic puffy hands and feet, along with upturned toe nails and tiny, narrow fingernails. When the head NICU doctor walked in to give us the news, my heart broke all over again. I didn’t know much about TS at the moment, but I did know that my daughter would not be able to conceive children of her own. Realizing she would be infertile was just a hard pill to swallow. After a night of searching, I became more educated on TS. I knew we had a long road to travel, but I was thankful to God for allowing us to be her parents. At that moment I decided to be hopeful. How can you not be hopeful when you realize that your daughter is the 2% that make it to term.

Although I am so hopeful, there have been moments where the grief seeps back in and I ask “why Caroline?” Letting the grief come back does not help, but I think it is a normal part of the process. During these past 15 months, I have found a wonderful support group with ladies who have daughters with TS. Finding a support group has been crucial to helping me accept some of the TS issues Caroline has and finding hope by listening to the moms of older TS girls. It is an amazing feeling to find a place where people just understand what you are going through and offer support and comfort.

Traveling through the grief process was hard, but I am so thankful to God for showing us something that has kept my daughter healthy. If I would have had just the standard 20 week ultrasound, my daughter’s cystic hygroma would not have been discovered. Since there is not enough awareness on TS, I wonder if anyone would have caught her TS at birth? Thankfully I don’t have to wonder. Although difficult, I am happy for the grief because it led to an early Turner Syndrome diagnosis. Early diagnosis is key for girls with TS.

I found “Welcome to Holland" while I was pregnant with Caroline. The essay was written in 1987 by Emily Perl Kingsley, about having a child with a disability. The piece is given by many organizations to new parents of children with special-needs.

WELCOME TO HOLLAND

“I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......”

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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!

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.   

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! 

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!

Yesterday I had what is called a limited ultrasound. It checks on the well being of the baby, but does not check growth. I saw the same ultrasound tech that did my first scan at 19 weeks. I think she was shocked at the well being of the baby despite the circumstances.

When Dr. P came to talk to us initially she had a funny look on her face… and of course my thoughts went to “oh no!”, but instead she sat down and said, “Well... today, everything looks ok.” Five weeks ago those words would have scared me, but now I know those words are good words. When your baby has issues you stop hearing the “the baby is healthy, everything looks good, etc.” type of responses. But when you get “OK” you are happy. Again… I could breathe easily – for a few hours at least.

There is no additional excess fluid, just the little around the heart that has been staying about the same. The heart and kidneys are healthy – except for of course the VSD defect. The cystic hygroma size is unchanged – not bigger, not really smaller. Amniotic fluid and placenta look great! The baby has no signs of anemia. The cord blood flow is actually better than at 19 weeks. It is now normal. When we met with her at 19 weeks she told us that the flow was: fast, stop, fast, stop. A normal flow should be fast, slow, fast, slow, and a really bad scenario is where it is fast, reverse, fast, reverse. This is a positive sign.

She literally told me the first time I saw you I thought things would go downhill – and gestured with her hand in a downward motion, but instead they are just staying like this – and she gestured her hand straight across. Small victories, Small smiles and a bit of relief!

We are still aware that babies with the type of issues our baby seems to have can reverse course… can pull fast ones on doctors still. So I will say we are feeling tentatively positive for now, especially since we’ve reached the magic 24 week mark. There are still no guarantees.

So where do we go from here? Well… new plans for a baby that will certainly need some “help” once outside the womb, but those plans coming from our doctor indicate plans being made for a LIVE baby. A little one that certainly exerts her presence to me on the ingestion of any ice cream, but has finally exerted her stubborn persistence to the doctors as well. So…on July 5th, I will undergo a 60-80 minute MRI, which will actually be on the baby - but since I'm the vessel I'm the lucky person that gets put in the machine! This is to assess the full structure and complexity of the cystic hygroma, and to give the doctors the information needed to remove it from the baby when/if the time comes. We are told it is very unlikely that a hygroma this large will go away at this point, so the planning has begun. It will likely require a series of surgeries as it can sometimes be complicated to remove – depending on how integrated it is with the vascular structure. The MRI will give the doctors the pictures they need to assess this. Sometime after the MRI we will meet with a pediatric surgeon to discuss our options and the course things may take with the surgeries. Also, at birth, they will be able to take a sample of the cord blood to test for any chromosomal abnormalities the baby may have.

Talking about these surgeries and tests… while exciting also reminds us that there is a VERY long road ahead whatever the course this takes. As I have been thinking of this, I know this isn’t a “do it and get it over with” thing. This is very likely going to consume me over the next several years. I hope and pray I have the strength it takes, for all of the surgeries and doctor appointments, for the waiting and the wondering. I’m wondering how I will care for my first born little “L” during this time as he deserves the best of me too. It has me worried about money and work and daycare and all sorts of things that if I think too much about will pretty much drive me crazy.

I also took the gestational diabetes test yesterday and I failed. I sometimes wonder how much more I will have to take. I wonder why I can’t even get one break. I wonder why losing 115 pounds doesn’t seem to have mattered. Good thing I posted this in the morning yesterday, since I certainly felt like a complete failure yesterday afternoon. So now, I have to do the longer test on Wednesday. I will be shocked if I pass. With “L” I was able to control my gestational diabetes with diet alone and didn't require insulin, only 4 times daily blood sugar checks. I guess I should not be surprised I have it, as it repeats in around 90% of pregnancies once you've had it.

My blood pressure and other tests – platelets/hemoglobin - were all good and normal!

My next appointment is in 2 weeks on 6/30

I cannot thank you enough for all of your positive thoughts and prayers and lovely notes of encouragement. Yesterday I felt an amazing sense of calmness and I know it was everyone lifting us up!

I sit here today and I am 23 weeks pregnant. It has been a full 4 weeks since that day. I sit here today not knowing what the future holds, but knowing that I am 4 weeks farther and I’m still pregnant. I am 1 week away from the gestational age of viability (which is 24 weeks in Minnesota) and I’m still pregnant.


I am in a state of acceptance.

Acceptance that this is not the pregnancy I longed for or imagined, but the pregnancy that I have been blessed with anyways.
Acceptance that I will NEVER get an easy pregnancy. I will never know what it is to have the pure bliss of being an anticipating mother to be, without all the stress that comes along with that.
Acceptance that I may either need to prepare for the death of my baby.
OR Acceptance of the earth-shattering life changes that would come along with her permanently joining our family.
Acceptance that I don’t know how I will provide for this baby if she has challenges. Would she be able to attend a regular daycare? How will I work?
Acceptance that I will not be delivering in the convenient suburban hospital, with a free parking lot, but instead in a downtown hospital, where the way is wrought with nasty traffic, road construction, and pay through your teeth parking (if you know me I hate driving into the city, and I hate traffic!)
Acceptance that I am not in control of any of the above.
Acceptance of how once bad news, is now the ‘not so bad news’

Acceptance has allowed me to have somewhat of a break from the 24 hour/day vigilant monitoring of the movements in my belly, and the complete exhaustion that brings me day after day. I have had many moments of freeing relief from just being able to think about and do something else for awhile. A mental break that was definitely needed. This is certainly an answer to prayer.

Acceptance has allowed me to walk across the street to the neighbor’s garage sale and purchase one tiny, newborn, pink and white polka-dotted dress with frilly bloomers to sit quietly in the closet and pray every single night that my daughter my someday wear it. Acceptance has allowed me to accept 2 bags of maternity clothes from a friend, and 1 bag of baby girl clothes. It has not allowed me to wash them and place them in drawers yet though.

Last week as you know we had another ultrasound appointment. We follow up with another ultrasound a week from Thursday – and then rinse and repeat every 2 weeks. My maternal fetal medicine specialist (Dr. P) will take all of my care from now on, so she’ll be doing my OB appointments too. Next Thursday I’ll have my gestational diabetes screen. I swear, if I have it, I honestly think poking myself with a needle several times a day may just be the thing to send me over the edge, but I have other things to worry about until then.

Yesterday we met with a pediatric cardiologist at the hospital. An echocardiogram – which is basically a heart ultrasound – was done on the baby. Right now the only heart defect they are seeing is a VSD – which is basically a defect that is a type of hole in the heart. We’ve been told it is small and may resolve on its own, or it may not. I will have another echo done in a month, because they are still checking for a defect known as CoA or Coarctation of the Aorta – which about 1 out of 3 babies with a cystic hygroma have. They were not able to rule CoA out yesterday because of the baby’s position and the inability to see exactly what they were looking for. We are hoping and praying that the VSD is the only defect, and our baby’s heart stays healthy and strong.

24 weeks – 28 weeks – 30 weeks… those are my next goals - like a child that needs a paper chain to count down to the end of school, or a Disney vacation – I only plan for and take one day at a time.

I can always tell from the number of blog hits that people are stalking for updates. That’s ok… I totally get it. I have done the same thing on some of the blogs I read. So, I’m sorry when its takes so long for me to post one. These posts are sometimes hard to write and after my appointments lately I am just so exhausted from the whole thing that I collapse.

Yesterday was no exception. My appointment was at 11:45 am. I got home around 2 pm, and finally got to sit down to eat lunch – I was starving! Then, I owed my mom a call, as I obviously need to update my family before any blog or facebook posts. By then it was time to pick up my son from daycare. Later that night I promptly collapsed into the couch being both physically and emotionally drained from the day.

So… on to what you are waiting for. The short answer is that we made it three more weeks, and things are not worse! While I longed to hear that things were much much better, knowing that things were not worse is really good news. Our definition of good news has changed so much in the past three weeks. This new reality we walk in is often surreal.

Now for the long description. The cystic hygroma size is at least unchanged and possibly very slightly smaller than it was 3 weeks ago. It is still a very large one – in the spectrum of hygromas, but it is not growing along with the baby, and that is good. They are seeing some grainy areas of the hygroma that they are not sure what is going on. It could be a sign of some bleeding, but the baby is not at all anemic, so there is no immediate concern with that.

The fluid in the lungs is completely gone! There is still some fluid around the baby's heart, but there is no excess fluid in any other areas. This is good. We now pray for the fluid to be cleared from around the heart as well. From what I understand, the fluid is very bad. This is a small victory for us.

The baby’s growth is similar to last time. The belly and head are measuring right at 22 weeks, and the limbs are measuring about 3 weeks behind. The baby overall is growing, and the proportions are remaining about the same. The baby is about a pound right now, which overall is average for 22 weeks.

Yesterday it was confirmed that our baby does indeed have a heart defect, but it does not look to be a serious one. My doctor believes it is a hole in the heart type of defect, and is one of the more common ones seen. Sometimes this type of defect even resolves without surgery. We will learn much more about this defect and its severity and prognosis as we met with a pediatric cardiologist for an echocardiogram on Tuesday.

At this point the maternal fetal medicine specialist will take over all my care. I will see her in 2 weeks and then every 2 weeks until the end of this pregnancy. I am going to make it 2 weeks at a time. That is what I have to hold on to. The first goal is 24 weeks, which is the age of viability in this state. Next goal is to make it to 28 weeks – at which around 95% of babies survive. My next goal is 30+ weeks. I need these goals. 30 weeks is only 7-1/2 weeks away. With God’s grace we are going to get this baby as far as we can.

We are feeling overall more optimistic, but with caution. As my doctor said yesterday she is encouraged, but also knows these babies do not always play by the rules. Good news now does not predict good news in the future. All I can do is appreciate the reality of that.

We got to see her face in 3d and we’ve confirmed she has the same nose as her big brother! Looking at my baby’s face only confirmed to me that she is absolutely 100% perfect! No question. Starting my car, the first thing I heard was this song:



I will say that I left the appointment yesterday with as much hope as I’ve had in 3 weeks, and walked into the afternoon sunshine with a small smile on my face – underlining the word small.

Reality is easier these days. The initial shock of everything worn off a little, and now it just feels like we are dealing. I want to be living versus dealing, but that is not my reality right now. Dealing is OK.

Thank you for your thoughts and prayers. Please keep praying for our daughter. We have a long ways to go, but every day is a step further.

I am not a patient person. I like absolutes. I like to plan. Right now I can’t do or have any of those things. There is only one thing I’m certain of– this is an uncertain journey!

22 weeks today


Friday’s “regular” OB appointment was “perfect”. My tummy is measuring at 21 weeks, my weight was up a couple of pounds, my blood pressure was 126/68 and baby girl’s heartbeat was 156 bpm. Perfect huh? Yeah, except what about all of the parts that are making this pregnancy a complete nightmare? Funny how something can be so right and so wrong all at the same time. It just makes me so angry.

I don’t have much else on my mind this week except our ultrasound tomorrow. It will be been exactly 3 weeks since I sat in the same office and was told about the complications with our baby. Time is now marked by the time before and the time after that happening. Time has been marked by how long until this next ultrasound, and now it’s the day before.

There is some sort of bliss in ignoring what happened on that day. But yet, I can never really ignore it fully. Tomorrow we are faced with reality again. And while I really want to know what is going on inside of me, a huge part of me doesn’t care to face that. Doesn’t care to hear the dire statistics again. Doesn’t care to be told that my baby is dying inside of me.

I have no clue what I’m doing.
I’m nervous.
I’m terrified.

I want to be told tomorrow that it was all some sort of huge mistake. That our baby is perfect and thriving, but I know that isn’t going to happen.  My happy ending has changed.

I envision a positive scenario that includes things like “she’s the same”, or even “the fluid has reduced a little”, or “we still can’t find a heart defect.” Those are my positive scenarios. But I know there’s a chance we’ll hear that she’s doing worse than 3 weeks ago.

I believe in healing.
I believe in miracles.
I believe that God is bigger than the 2-7% chance this baby has to live.
And yet… I know that my plans are not His plans.

I pray that whatever the news is tomorrow that I am strong enough to take it.

Today I'm 21 weeks pregnant.
What has happened this week? 

I've had pretty much little if any nausea - yay for that... finally!

On Sunday I did a 24 hour urine capture... wow, that was NOT fun.  Basically you put all of your pee in a giant jug and haul it into the hospital 24 hours later for review.  At the same time, my doctor had ordered some basic preeclampsia lab work to be done.  This all serves as a baseline to compare to should I start to show signs of preeclampsia.  Before I got pregnant, I was told that due to my history I had a 60% chance of a repeat of some sort of preeclampsia.  I've only been told that now with the baby's complications my chances are "higher"... no clue exactly how much higher, and honestly statistics mean nothing to me now that I've hit a .2% chance of something happening... twice!  If your wondering, I don't lottery tickets, as it is never the good things that hit me this way.

I still think I look "wide" rather than pregnant.  I don't have a stick out type of belly, but its definitely rounding out.  I can feel the top of my uterus right at my belly button now.  Lots of stretching pain the last week too, especially in the last couple of days.

I think this baby's legs are getting stronger!  Sunday and Monday I didn't feel a ton of movement.  I was scared, and feeling really down.  I guess the baby was resting and growing, because yesterday and today I starting feeling some major kung fu going down in there.  It makes me feel like she's strong when I feel those kicks.  It gives me small moments of hope.

I wanted to leave you with this picture of our daughter... well, really just her finger and foot.  We received these 2 weeks ago, and only today have I been able to bring myself to   look at them.

Baby Foot!



Tiny little fingers

I have to admit, I have been staring at these for awhile, and have been thinking how perfect her foot and fingers look - how amazing and thoughtfully designed she was... and yet at the same time, I know she has a large hygroma, and is not thriving as she should be.  I try and try to understand it all, and find that I can't.  I don't know that I'll ever be able to.  Trying is so exhausting sometimes.

How can things be both so right and yet, so wrong?

This is not the post I had ever imagined writing. It is not a post I want to write, but I have known for the past several days that I would have to write it. I can’t hide forever. It is a part of my life right now that I would probably rather close off, but as I have always thought with weight loss that if hearing this can help someone else, then it makes it worth writing it. Right now I feel alone. I have been searching for other experiences, other blogs, for hope, for the things to say… so far I’ve come up empty. I want to document this anyways… as a coping mechanism, as something tangible that I can have for later. So here goes…

Thursday morning we had our 20 week ultrasound. The baby is a girl, so my premonitions were right. But there are complications with the baby. The ultrasound tech was very happy-go-lucky. Never in the 30 minutes she was scanning me did I feel something was wrong. The baby was moving a ton, we joked about it. At the very end she said, “Let me make a deal with you guys, I’m going to get a doctor to check something out, and after that we will try to get some better pictures, ok?” She left the room. I looked at my husband and remember saying, “This cannot be good, but even as I said it, I did not, nor could not understand the enormity of what was about to come our way. My very own doctor entered the room, and said something about some excess fluid around the heart and lungs, and after that we were given an appointment 2 hours later with a maternal-fetal medicine specialist. We left in a daze, not understanding what was to come, and later that day met with a specialist and a genetic counselor.

There are many unknowns at this point, but I will tell you what I know. These are the facts.

The baby has a cystic hygroma on its neck - this is a large fluid filled sac - kind of like a big tumor. She also has fluid around the heart/lungs - and while the heart structures appear normal, the fluid is likely evidence of a heart defect we are not seeing yet. The baby is not completely growing on track - the arms/legs are shorter than they should be... Yet are normal. The head/belly are measuring normal. The baby’s weight is normal for 19 weeks. The baby's face, spine, and brain structures are all normal. So much wrong, yet so much perfectly formed.

The specialist feels it might be something called Turner syndrome. Turner Syndrome is a chromosomal abnormality - in basic terms a girl is an XX and Turner syndrome girls are missing part of all of the second X chromosome. Normal babies have 46 chromosomes, Turner syndrome babies are 45 chromosomes. It is present from conception. It is not something you can "fix" by resting more or doing something different. 90%+ of babies with Turner syndrome die in a miscarriage or stillbirth. The majority of those are first trimester miscarriages, so it is uncommon to see Turner syndrome beyond the first trimester, as in my case, and even more uncommon for a Turner syndrome baby to make it to birth alive.

We are told that the condition of the hygroma and fluid in the heart/lungs will either get worse, stay the same, or get better - not really very helpful. Babies with Turner syndrome have a very high incidence of heart defects many of which are unfortunately fatal. The Turner syndrome itself cannot and will not go away. Also, to make things even more confusing, the baby may not have Turner Syndrome and could instead have a rare unknown genetic defect, been exposed to an infection, or even have Down Syndrome. Although the doctor feels those are unlikely scenarios. For now though, given all the evidence, the doctor strongly feels this is classic Turner syndrome, and it is what we were mainly counseled on. We cannot know definitively if this is Turner syndrome unless we do an amniocentesis, which we have decided against for now. It doesn't change the outcome anyways.

We have been told there is about a 2-7% chance our baby will be born alive. Unfortunately the baby having these issues puts me at even a higher risk of preeclampsia and HELLP syndrome to reoccur. So, the doctor’s are definitely having to manage my health in all of this as well. I will be at a doctor every 1-2 weeks for the immediate future. Once the baby is past 24 weeks - about 4-½ weeks away, they could deliver her, and intervene more easily for her on the outside, but a 24 week baby - even one without outstanding health problems, still doesn’t have a great chance of making it.

If the baby does have Turner syndrome and does survive the pregnancy without severe heart defects, she can have a very good life... she could never have children of her own, but would have a near normal IQ, with little if any mental handicaps, and not really any outside longstanding cosmetic symptoms, other than she'd probably be quite short.

We have a follow-up ultrasound in 3 weeks at the specialist to see what is happening (worse better or the same), and 5 days after that the baby will have an echocardiogram - which is a special heart ultrasound done by a pediatric cardiologist.

How am I feeling? I am going to be completely honest here. I am extremely bitter, angry, and terrified. I am having trouble having any faith or trust. After miscarriage, the difficult birth of my son, and now this I feel that somewhere I must have done something horrible in my life to deserve all of the sadness that has happened to me and my family. I do not deserve this as a reward for my efforts. This little girl does not deserve this. I feel like the weight I lost, the huge life changes I made were all for crap. I feel like I'm in a haze walking outside my body watching a nightmare unfold. Given my history and our experience and age this is our last chance to add to our family, and the sadness I feel is gut wrenching at best. And yet, in the midst all of the hurt, pain, crying, I have small moments of peace, relief, and clarity - small ones - but I suppose that is all I can hope for. It doesn't help when I feel the baby kicking and know she is alive and trying, but doesn't know the reality and gravity of her situation. My bubble is certainly burst!

I know that miracles do happen, but I also know that this world is full of sin and evil. I believe in the power of God to heal, but I have not been able to pray for myself or my unborn child yet, as I have no words to say. I am hoping for a miracle, yet I am expecting the worst. I am a pessimist, I always have been. I know many other people are interceding on our behalf already, and I cannot thank them enough. I would covet and appreciate any prayers you can send our way. I would appreciate you spreading our little girls story to others that might pray for her as well.

I cannot guarantee how I will handle posting from here on out. I certainly don’t feel like posting about weight loss or health, as it all seems so unimportant and trivial at this point. At the same time I’m not sure how I feel about posting about this pregnancy ongoing, but as I stated at the beginning, I also wish that I was able to find a blog out there sharing someone else’s experiences with this, and so far have come up empty.

If you have them, hug your kids tonight. I know I have been hugging my little boy constantly. I knew already he was a miracle given his start in life, but I only feel it even more strongly now. Over the past 4 years of my life I've unfortunately come to realize what a miracle having a healthy baby actually is. Yes, it seems like people do it every day, but so far in my life that has not been my personal experience.

Bubble. Officially. Burst.