Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, June 30, 2011

Routine appointment.. what's that?

Today I went back to see my regular OB.  It's the first time I'd seen her since the initial ultrasound that found the Hydrocephalus.  I was excited to see her because she is a great doctor, and has been wonderful to me through Anna, Maura, and the miscarriage. 

She came in and we talked a little bit about delivery.  I really had no other questions about Meagan in particular because I feel like, at least for now, I have a good grasp of the hydro and all the issues "a to z" that we could be facing.  She told me most likely, we would be looking at a c-section, which I expected. She described to me a little bit what would go on... and said we'd cover a lot more at my pre-op appointment before delivery.  She said that she is hoping since everything looks good so far I can be delivered at 38 weeks.  I'm hoping for this too because of course, goal #1 in this sea of unknowns is to keep Meagan in as long as possible so she is the absolute strongest and healthiest for surgery.

She also told me that she'd make sure they let me see Meagan before they transferred her, and that if all goes as she thinks it will, that she can get me out of there in 2 days so I can go to Children's to be with Meagan. Of course, as with everything in Hydro, it's all a 'wait and see' game in reality. 

I got my blood drawn for my antibody test as well. (I'm a negative blood type, so every pregnancy I have to have an antibody test, and then a Rhogam shot at 28 weeks to prevent my body from fighting the baby. Another shot is given to me within 72 hours of birth to protect future pregnancies. So far I've had all positive blood type children, so I've been lucky (insert sarcasm) to have the after birth shots as well. LOL)
Today was pretty routine - belly check, heartbeat check, blood draw... but.. with the last month of mayhem, it certainly was welcome!

[As a little 'aside,' I definitely want to compliment my OB for what a great doctor she is. She has the attitude and personal character of a 'midwife'... but has the medical skill and expertise of a great OB ... which I love.  It's the perfect combination!  She has been a lifesaver through all this, and always been a huge support.  Even after the miscarriage, she scheduled a 45 minute "talking appointment" once everything was over, just to make sure I was ok. I really appreciate that alot -- these doctors deal with our whole LIFE... because they deal with the very birth, loss, worry of our children, who ARE our life. I appreciate her taking so much extra time and tenderness in dealing with me, and also having a balance of giving medical information and not losing sight of the humor and joy in life.  I'm sure she treats all her patients this way.  She gave me a huge hug and told me that she knows I'll be fine - she knows Meagan will do great and that I am strong and can handle this. And you know -she's right. And that's the kind of attitude we SHOULD have from our perinatologists!

Lastly, I was reading about Meagan's astrological sign since her birthday got changed (and may change again)... if she sticks with her new date,  she will be a Libra.  I found it kind of fitting that a Libra's main character trait is to "be consistant and live an easy and uncomplicated life." I thought it was funny that character aspects I already see in Meagan AND a wish I have for her were both incorporated in her sign's key traits.  So far, she is showing her steadiness and consistancy -- doing a great job staying strong, staying healthy, and so far, managing the growing fluid in her brain.  And of course, with all the unknowns in her future, I do wish for her an easy and uncomplicated life.  This doesn't mean I don't believe there will be hardships or struggles for her - but - I think as long as we can keep reinforcing the right attitude within her soul, it can most certainly be uncomplicated. I just want her to know the joy of life, and, be happy that she gets to experience that everyday.

25 weeks down.... 13 weeks to go!

Monday, June 27, 2011

Blueberries and Collards

Dear Meagan,

Yep.. you loved the popsicle. Took you long enough but I was finally able to count enough kicks to let myself fall asleep.

I had daddy's collard greens today for lunch.. and you love those too because ever since I ate them, you are going NUTS.

So now I know you love blueberry popsicles and collard greens. Strange combo, but, we'll go with it.

Oh, and don't ever be that quiet for that long again please. I feel enough stress and worry for you as it is and it really made me mad. ;)

Sunday, June 26, 2011

Silence is not always golden

It has definitely come to be my understanding this week that I am more obsessive about Meagan's movement than my other kids.  If the other girls had a lull of 1-2 days, I never thought much of it.... I figured they were growing, or I had been moving around alot and not noticed... But when I don't feel movement with Meagan, my immediate reaction is panic.. my heart gets faster, and I go sit or lay down right away until I can at least feel a kick or two.  I know a lot of this fear is completely unfounded, but with everything going on, I think this is evidence that I'm not always good at looking past the worry. 

Today has been one of those 'lull' days for her - I have felt her maybe once, at Mass this morning, and since then nothing... so every hour that passes definitely makes my pulse race a little more.  One thing I have eaten during this pregnancy that gets a reaction every time are Acai Blueberry Popsicles. Other sugary things don't always make her respond.. so she must REALLY like these.  When I went to get one, they were gone, so, of course Brian offered to go out and get a few new boxes.  They are so good and really help with the summer heat - but in a way they are also like my "movement medicine" ...  on days of little movement, one of these usually creates a few good kicks so I know all is still well.

The ultrasounds seem to compound on my worry. I absolutely love to see how incredibly energetic she is on our ultrasounds, no matter the time of day... but when I don't feel her as much, my thoughts immediately race to the worst case scenerio. It always gives me relief every 2 weeks seeing her up there, dancing around inside.. but in between appointments it's like time is suspended.

So I'm going to enjoy my Acai Blueberry popsicles tonight and wait for those precious movements I crave ... I'm sure she'll beat me up, as usual, once the popsicle 'kicks in' .... but man, those moments in between are scary. Not even a teenager and she is already making my heart race.

 My definition of "comfort food" has definitely changed... and it is apparent to me that although I am incredibly strong, my worry will not be put to rest until I am holding her safely in my arms.

Monday, June 20, 2011

The Coach

I thought in the midst of all this, I just had to stop, and take a moment to give a 'shout out' to my husband, Brian. 
Brian and I met in college - we had a group of mutual friends ... started dating Sophomore year, got married after he was finished with Graduate School, and, well, that's about all she wrote :)  We started having kids right away - we knew we wanted to start young since we had been lucky enough to meet young.  Our first was born 10 months after our wedding. 17 months later, we had our second. 15 months after that, our third was born. The space between #3 and #4 felt like forever because it was a full 2 years (gasp) and this little one will be 2 years behind our 4th.  We are just so blessed with our family, but alot of that is due to Brian and the person he is.

I'm not sure about most guys out there - but - Brian surviving each day with (almost) 6 women in the house and still having a great attitude and smile on his face sure says alot. I'm sure he would love to have a son to do "guy things" with, but, every time, he has just been so excited to have another little princess in his life. He is the best daddy ever. He plays kitchen with them, princess, he schools them in how to be a loyal basketball fan (to Xavier University of COURSE! Go Muskies!), and he always tries to teach them new things. He also can make them laugh by using some of his 'guy humor' and they always get such a kick out of that.  He is stern when he needs to be, but, very loving and open to them.  He is the best girls' daddy ever. 

All this news has been quite a shock to both of us, but, I know it has hit Brian especially hard. Brian worries very differently than I do. I have my emotional moments, but, I tend to talk about it alot, ask questions, seek information, and run full force into the storm looking for any answers I can find.  Brian takes in all the information, but, he rarely talks about it. He is a wonderful listener, but, he also is very nervous about the path we are traveling down.  I know he has other worries on his plate, like our well being, how he is going to provide financially for all of our newly  learned medical bills, how he will provide if Meagan has problems down the road..etc. I know he must be so stressed about these things, and I feel awful about that. But I also feel proud to have such a great man by my side. The very fact that he is worried shows me how much he loves this little girl already - and he hasn't even held her yet. 

Brian is the best dad because he puts being a dad first.  He has a very demanding job - which I respect, and appreciate. However, upon finding out Meagan's diagnosis, I was shocked to wake up the next day and find Brian was still at home. He took all of us to the Zoo that day - just to hang out as a family, and have some time together and let everything soak in.  At night, while I am putting dishes away, I will notice the girls are just "gone"... and then I go upstairs to find he is putting Maura's nighttime diaper on, or helping the older girls brush teeth or get into bed.  In the mornings, if one of the girls wakes up early, I notice he walks downstairs and fixes some cereal so I can lay down just a few minutes more.  He takes all 4 kids to Mass while I volunteer to play and he never complains about handling them all by himself while I am in the choir loft.  He prays with the girls at night before they go to sleep.  And throughout the day, he will just call or text and ask me "How are you?"   He has been "present" through the weekends as far as being mentally and emotionally there for us, and hasn't let work distract him away from our family time.  For all our doctor appointments, he has been right there with me - and for most of them now, he has gone ahead and worked from home the rest of the day because he knows how I am more stressed on days where we find out new information. He just stays near in case I need him.  He also already took initiative to inform his work of what was going on so he can continue to be there and support me, or help Meagan when she is born. 

Brian is a very hard worker - he puts A LOT into his job. He is smart, witty, and gets the job done - he is a go getter and a strong employee. But he also never loses sight of what is really important in life. When things got tough, he came through. I never minded putting the kids to bed while he worked late - but now, that rarely happens because he tries to be home more to help.  I never minded him working through some weekends, but now, he rarely pulls out the computer so he can give our girls his FULL attention.  I never minded any of the obligations he felt were necessary to better himself at his job -- but -- I see now that he also knows which obligations are most important - and that is to us, his family.

When we started having kids, we talked about numbers. I come from just two.. one brother and me.  Brian comes from five... I was open to whatever, so he mentioned thinking it would be fun to have his own "basketball team" (five kids) like he had growing up. I said sure, let's go for it, but take one child at a time and see what happens. After our 3rd girl was born, we joked about growing the "team"... but it possibly being an all girls team. Now, after finding out #5 is a girl -- it is no joke! :) I always get a kick out of this because it's something we just never thought would happen. 

Looking down the road, I thank God for such a great guy.  A great husband, who constantly runs out buying the Acai Blueberry popsicles I, uh, I mean, Meagan, is addicted to.... a great father who is always there for his girls and shows them through his actions that a REAL man and father is there for his family FIRST ... and a great friend who is always worried about what others need.

I think God knew what He was doing by giving us 5 girls, and one as special as Meagan will be... because he knew that Brian was a great Coach. God knew Brian could handle the all girls team, and handle anything that came there way. Meagan needs cheering on now to keep growing and staying healthy... Brian does that.  She will need a loving person by her side as she is transferred to Children's Hospital, away from me, and is prepped for surgery - Brian will be there. And she'll need that person to push her beyond her limits when she reaches a point where she may be struggling developmentally... and I know Brian will push her.

Meagan, you better get ready girl! You are the final member of the team... and I know your Daddy is not only the best daddy in the world, but also the best Coach you could ever ask for. He loves you so much already.

And Brian - thank you a million times over. I know, now, why God put us together.  Even though I have it together most of the time, this stubborn Slavic girl needs a shoulder to lean on through times like this..... our girls need a strong example of what a real loving father is..... and our family needs the example you bring everyday through your actions and words. Congratulations on a great team Coach.. go get 'em!

Photos: 23 weeks 3 days

Profile pictures... I think she's laughing at us in one of these.

Hmmm.. big feet still there? Check!

Hello face!

One of the few head scans from this week-- she wasn't being very "cooperative" .. Doctor said her ventricles have grown since last time, but wasn't able to measure to give us an accurate number today.  He said her mid-brain is splayed and she has 9mm of surviving brain tissue left.

The Second Hit - but this time we had our gloves on :)

We met with the Pediatric Neurosurgeon today. He (or a colleague if he happens to be out of town when Meagan is born) will do Meagan's shunt surgery.  He explained to us the whole procedure, and how it shouldn't take very long. He was "impressed" with Meagan's ultrasound photos - he said they were so extremely clear, that he felt a fetal MRI would not be necessary right now.  He said he would have an MRI and CT Scan done at her birth anyway so he had a better picture of what he was dealing with before taking her to surgery - and if there were any other underlying issues we cannot see in utero.  He gave us the name and number to another Hydro family in the area who he worked with about 2 1/2 years ago or so.  He said Meagan's pictures reminded him alot of their son's pictures, and so we should probably contact them just for a reference point.  Overall he was very nice, explained things medically, and, ya know.. was a brainiac :) He often said "Um, may I put things bluntly to you?..." "YES! Please!" was always my response... I like that much better than the 'tiptoeing' around that usually happens!
He did address the cord blood infusion at Duke.  He of course stated that he is not 'convinced' of it, and it is still experimental and 'unproven'.... he asked what our intentions were, and, I really didn't have an answer at the time.  After hearing his explanation on things, I completely respect his opinion and understand where he is coming from. At the same time, I know families' personal stories that have really and truly seen a difference from reinfused stem cells... sooo, I think it would be wise for Brian and I to take in both sides of information - and move forward with the Duke infusion.  We will go ahead and get Meagan's blood captured at birth and send it off to Duke - when we go may change depending on how bad or well she does - but I think it's at least worth one infusion. Since the research is experimental, who knows if it will really help - however, that is also the very reason we probably should do it.  Stem cells aren't necessarily a "mystery".. but them working for this particular condition is... however with stem cells track record in other things like cancers, I think in years to come we will find when the "proven" research surfaces, infusions for conditions like Hydrocephalus will benefit from doing these practices.  So at this time, we're going to press on, and take in both the advice of our medical doctors here, and the real life experiences of fellow Hydro families with this procedure. This is her brain, which could affect her entire life... so experimental or not, it's worth at least one shot. We can always step back and re-evaluate after that.

We then went back to our Perinatologist.  He did another scan of Meagan.  She was moving all over the place and had her head wedged way down just to make it difficult on the tech to get her to move.  She finally did roll around and let them get some brain pictures.  Her ventricles looked larger than last time..... he said this was expected... he said she will probably have more expansion as we get later into the pregnancy, but it's just something we have to wait and see (as is the journey with Hydro).  I asked him if they were much larger than last time, and he said in his opinion, the fluid was "worse." He said he would like to re-scan in 4 weeks to see what kind of growth we see after a whole month. There is nothing we can do in utero - so there is no 'need' to come back in 2 weeks. He did offer it to me anyway - he said if it would make me feel better, I was welcome to come back in 2, 3, or 4 weeks for a re-scan so I could have the best peace of mind.  I appreciated this, but, because we still have to go see my regular OB in between, I just said 4 weeks was fine.

 The Perinatologist did not take ventricle measurements again today - he said her mid-brain was now splayed (split) and he could not get a good measurement. He did, instead, measure her brain tissue - he also said there is only 9mm of brain tissue left... kind of scary to hear, but, I let it roll off my back - there is nothing I can do now anyway... so hopefully once she's delivered, we keep that sliver of tissue and it gets to re-expand into a big beautiful healthy brain.

 I do have to give our Perinatologist credit though - he DID offer to get us the information on the contacts/doctors at Duke, so I thought that was nice of him - leaving it up to us as to what to do. I didn't see the need to go into the Duke stuff now with him - we are moving forward, and, we'll cross that bridge when we get there. At least he offered to put us in touch and is open to what our plans are ... for what we think will be best for our daughter. (and little does he know, we have already registered with the infusion program - so we will just inform him of this at our next appointment).  We are still very much up in the air as to whether to get the amnio or not - I know it could rule out genetic causes... however... I just don't know if I even see the risk at this point. We are leaning towards just having her tested at birth now - but - I will re-evaluate that at around 30 weeks to see if we change our minds at that point.

In addition to her brain pictures, we did get some more awesome pictures of her face/profile and body.  She is quite a show off ... She was opening and closing her mouth - almost looking like smiling or laughing at times.  She was rolling around, crossing her legs "criss cross applesauce" style over her chest... then she would tilt her head back and put her hands behind her head. She certainly shows the intention to keep up with her big sisters.
Everything else measured right on time (body, abdomen, femur, humerus etc..) and is where she is supposed to be now - 23 weeks and 3 days.  Her head circumference did measure beyond that for the first time -- 24 weeks 6 days.... so a little over a week. Dr. Korotkin said that was pretty normal and likely by the end of the pregnancy he expects that difference will be much larger. I had read that and heard that from other families, so, I wasn't shocked at all.  We'll just see how that goes over time.

I think the biggest lesson from today was - never ever make decisions after meeting with the Perinatologist for the first time and the genetic counselors.  The Neurosurgeon was FULL of information, very medical, methodical, and "told it like it was" without being all gloomy.  He gave us the full picture point blank, which I appreciated. He didn't sugar coat anything... he said this was not going to be a "walk in the park".. however, he also had alot more hope for our daughter than anyone so far. He is the only one who has taken our attitude of "help her" and run with it.  He talked about her like a person - and like she is important and on her way here, so let's make a plan to help her. I appreciated that. Since he is the actual "brain guy," I valued his outlook more than the specialists and counselors at that point. 

I highly recommend for families who get this diagnosis in the future to talk to a Neurosurgeon about your particular case before deciding ANYTHING.  The Specialists are so doom and gloom... the genetic counselors are so termination and excessive testing "happy" .... but the Neurosurgeons just kind of lay it out there.  I think they should really have families see the Specialists, get the scans, and then go straight to the Neurosurgeons for the actual "counseling" .... it is a much clearer picture about what we are heading in to without scaring the living daylights out of us.  I don't think we should even have to talk to the Perinatologists or especially the genetic counselors until after meeting with the surgeons .... we'd be a lot more grounded, and, armed with much better information before hearing all the "doom and gloom" news. Don't get me wrong - we have to be informed of the good, bad AND ugly...but...there is a way to relay such information that is helpful to a family.

Overall, it was a very productive day -- now on to the very famous "hurry up and wait" until we go back in 4 weeks. I'll be pushing 29 weeks by then, so we'll have a better idea of how our third trimester will shape up.

Keep fighting Meagan. We love you.

Friday, June 17, 2011

Mother Teresa

As we continue down this journey, I read more and more stories of mothers wanting or contemplating termination for this diagnosis. Without trying to sound insensitive, I must say, I do not understand this logic. AT. ALL.  For us, our "options" to "deal" with a pregnancy (good OR bad) stop when we become pregnant.  The moment we open ourselves up to conception, we open ourselves up to that child's life.  We do not open ourselves up to the child's life with a list of conditions of acceptance.

If my job gets tough, I don't quit. If school gets hard, I don't drop out. If a friendship gets rough, I don't give up. If my marriage gets hard, I don't run away. If my children get sick, I don't give them up. So when my child, in utero, is ill or disabled, why is it then 'ok' for parents to consider ending her life? Why is the most dangerous place for a child in her mother's womb? This is totally unnatural.

I'm not disregarding the fact that a diagnosis such as our daughter's is tough. It is. It is devastating, sad, uncertain. It can (and should, frankly, if we are human) make us, as parents, upset, worried, and even angry at the world. However - how... HOW.. does this translate into thinking it's ok to end her life?  What happens down the road if we can see into the future - what if my oldest daughter was destined to be in a biking accident at 8 years old and have severe brain damage, and we could find this out when I was pregnant with her ... would we end our children's lives because of terrible things that happen to them down the road? How is that any different than Meagan going through a terrible thing right now? There is no difference. And I am so sick of the term "Termination for medical reasons."  That is a nice way of saying "I chose to kill my child because I did not want to deal with all the hardships he/she may bring."

I know it sounds blunt, but, it is the TRUTH. Parenting is rough - we had 4 kids in under 6 years...a move, a lot of ups and downs... financial uncertainty...etc..and now with Meagan's diagnosis.. how will this affect our limited finances? How will it affect our older children and their activities, routine..etc..?  it is ROUGH! But .. it is such a joy! I look at my girls and cannot imagine what is more important than them being right here where they belong. Why should I think differently for Meagan?   There will always be good days and bad days.. and I'm sure we will know this to an even higher degree once Meagan is here.  But...such is life.  Why are we teaching our children of this and the next generation to give up on difficult situations? Or that life with hardship is life not worth living? What kind of lessons does that give our children and grandchildren?  If we teach them that it is ok to end a life in the womb because of a terrible diagnosis - how do we then explain to our living children what to do when life DOES get hard for them?   How can we expect good children, when from the beginning we tell a mother it is ok to kill her child? And who are we to decide what quality is when it comes to life?

The job of being a mother is NOT to make it as EASY on us as possible! It is not to "alieviate" our child's suffering even by crossing deep moral bounds of taking an innocent life! It is to LOVE the child - period. End of story. Anything else that comes along with it is all just part of being human. It is part of our humanity to have human suffering - as mothers, this is difficult to see in our own children...but we must understand it is NOT ours to take into our own hands.  That is why we must try our hardest to accept what we are given -- and help our children with whatever hand they are dealt.. because ultimately we are trying to get our children to heaven. We cannot accomplish this by hiding behind a "termination for medical reasons" bogus excuse - WE do not decide if and when our children enter heaven...we need to accept them, hold them in our arms and walk the path WITH them no matter how hard.. and THIS is how we are truly fulfilling motherhood - and truly helping our children reach heaven to be with God one day.

And what about the mother...the woman. It is not natural for a mother to harm her child... so when one feels it is 'necessary' to terminate due to medical problems with the baby, it doesn't help her either. She probably feels alone, scared, and like there is no hope for her baby. We should be wrapping our arms around these mothers and helping them... giving them hope... and telling them that it's ok to have all those feelings of fear and anger. But we should also help them to protect their child, and start being the best mother they can be... even in the face of such unknowns. We need to also protect the mother from a lifetime of regret and sorrow and help her see that she was chosen for a reason to have a child who would need her so much. God must know these women who go through the devastation of their child's diagnosis are stronger than the 'what ifs' and the 'negatives' ... He must have looked upon these women, and said "Yes, YOU are strong and loving... and you can do this so I will give you this special child." We cannot continue to let doctors scare these women out of being what they already are with the child in their womb - a mother.

This whole situation got me thinking about Mother Teresa.  She was such an example of unconditional love on this Earth. THIS is the kind of love and open hearted acceptance we, as mothers, should have for our children. I pulled a few of her quotes which we should all read and take to heart.

"Please don't kill the child. I want the child. Please give me the child. I am willing to accept any child who would be aborted, and to give that child to a married couple who will love the child, and be loved by the child. From our children's home in Calcutta alone, we have saved over 3,000 children from abortions. These children have brought such love and joy to their adopting parents, and have grown up so full of love and joy!"

"Any country that accepts abortion, is not teaching its people to love, but to use any violence to get what it wants."

And my personal favorite, which basically sums it all up:

"It is a poverty to decide that a child must die so that you may live as you wish."

Thursday, June 16, 2011

Sweet Poem!

A fellow Hydro mom posted this - so I have to give her credit! But it is so sweet! [I changed all pronouns to "she" or "her" since we are having a girl :) Love this!]

A meeting was held quite far from Earth,
It was time again for another birth.
Said the Angels to the Lord above -
..."This special child will need much love.
Her progress may be very slow,
Accomplishments she may not show.
And she'll require extra care
From the folks she meets down there.
She may not run or laugh or play,
Her thoughts may seem quite far away.
So many times she will be labeled
'different,' 'helpless' and 'disabled'.
So let's be careful where she's sent.
We want her life to be content.
Please Lord, Find the Mother who
Will do a special job for you.
She will not realize right away
The leading role she's asked to play.
But with this child sent from above
Comes stronger faith, and richer love.
And soon she'll know the privilege given
In caring for her gift from heaven.
Her precious charge, so meek and mild
Is heaven's very special child."

Monday, June 13, 2011

Kids perspective

Obviously, with other children in the house, we are bound to get alot of humorous questions along our journey. 

We have four other girls - 6, almost 5, 3 1/2, and 1 1/2 years old respectively.  The very little ones won't grasp much, but, we still chose to talk to all of them about the baby. Things will be a little different - even if Meagan does really well, we still want them to be prepared for unexpected events, hospital visits, and/or set backs. 

Having a new sibling is definitely not new to them! They are used to mommy's belly growing, mommy going to the hospital, coming to see mommy and the new baby often that very same day, and then within 2 days, mommy and baby coming home.  Except for lots less sleep and newborn crying, not much has changed in their lives when we have had a new baby, except a new person is along for the ride in our schedule.

When we talked to the girls about Meagan, we wanted to prepare them, but, also keep things age appropriate.  They were excited to know we had found out the sex - they had been asking and asking (because they were all DYING for a little brother.. LOL)... When we told them it was another girl, they all laughed. They couldn't believe it and my oldest said "Oh my goodness! So many girls!" haha.

We  told them that our new baby was named Meagan and they were all very happy with her name. The older 2 were already making up nicknames they would call her when she was born (Megs, Maggie, etc..) and were having a ball talking about that.  Then, we told them that Meagan was a little bit sick.  The two younger ones probably didn't even grasp what we were saying -- but the older two immediately started with questions.

Our oldest (Reilly) asked us why she was sick - what was wrong with her.  I told her she had something go wrong when she was growing so a little water (I used the term water only because I knew she wouldn't understand if I said 'fluid') had accidentally stayed in her head and she was having a bad headache so we had to help her after she was born to get her healthy again.  Reilly then asked if it was in her brain (surprised me!) and I said yes, it was.  That was it for the questions and all they said is "Ok well we will pray for her" ...

A few funnies from the weekend:

 The two older girls were playing "house" and "dolls" and pretending to be friends with kids ...  Reilly asked Kaitlin (second oldest) to watch her other kids while she took her baby to the hospital.  Kaitlin said "ok"... when Reilly started to walk away I asked "Oh, why does your baby need to go to the hospital?"  She looked at me and said "Oh, she just needs to have her brain checked out."  I actually giggled because I realized in the whole situation, "brain" was the one word that from a 6 year old perspective made sense - she knew what it was and where it was - and that's what she had grasped from our talk. It gave me quite a laugh.  

Later, Brian and I were discussing the future room arrangements - now that we knew she was a girl, how were we going to divide rooms...who was sharing..etc.  We talked about this at dinner in front of the girls, who were getting very excited about their new "roommates"..etc.  We told them, though, well it wouldn't be for a while - probably another year because for the first several months, Meagan would be in our room, next to mommy.  Reilly asked, "Oh, is that because you have to watch her head?"  Again, I laughed and said "NO! It's because little babies wake up alot to eat and mommy doesn't want to walk down the hall to feed her!" haha... I told her they had ALL been in my room for the first several months.  I thought it was so funny how she thought otherwise. 

We then asked the girls, wow, when Meagan comes, where will she sit at our table? (Our kitchen table is pretty much maxed out) ... the girls looked around and Kaitlin pointed next to her and said "Right HERE!"  I said, ok that looks like a good spot. Then Kaitlin looked up and down the table and said "Wow, mom... when Meagan comes, we are going to have such a LONG family!" ... Um.. big family Kaitlin? Again.. gotta love the kids' perspective on things. :)

Finally, when I was putting Reilly to bed the other night, she looked at me and bluntly said, "Mom, what if my prayers for Meagan don't work?"... I thought it was a great question! I told her "Prayers ALWAYS work, Reilly... They just don't always work the way WE thought they would." :) 

Just thoughts

I was talking to a few of the Hydrocephalus moms online ... and they had a really great point!  Here are some of the things we often ask doctors in the beginning because we just want answers:
Will she walk?
Will she talk?
Will she eat normally?
Will she be delayed at all in learning?
Will she have seizures?
Will she be delayed in any motor skills?
Are there any motor skills she will not ever be able to do?
Will she have complications?
Will she need shunt revisions?
Will she need additional surgeries?
How long will she be in the NICU?

And you know what the doctors answer is to EVERY one of these questions? I DON'T KNOW.

Fair enough, as prognosis is a total toss up.

But, then, we ask the doctors the following question:

Will she be a "normal" kid at some point or have a quality life?

And you know what the doctors say? No.

Ok, now I may just not be connecting dots here.. but.. if the answers to all my questions about Meagan's future life are "I don't know" .... and the answer about her life in general is that it will be "awful" .... how does that make any sense?? How can they be SURE her life will be sooo terrible.. but they cannot definitively answer ANY of my above detailed questions?

The logic just doesn't follow.

And HERE is where I have found the sadness in Meagan's diagnosis.  Doctors claim to know these children's lives will be just awful, but they don't even know one thing about their prognosis in any area of their future lives. The logic just doesn't follow - it doesn't make sense. What it tells me is  that, as parents, we tend to digest information and then move forward with how to best provide for our kids, whether they end up "normal" or not... the doctors know as much as we do about prognosis - NOTHING - but choose to extend themselves to say that our children's lives will be awful.  Honestly, this is really overstepping their bounds - they choose to perpetuate the absolute negative.. based on NO evidence. Hydro is such a toss up - there's no way they can tell any parents WHAT their child's life will be like.

So, I think the doctors should just say the truth - when we ask about her life ever being "normal" or having quality.. they should just say "I DON'T KNOW" instead of possibly endangering the child's life by being "so sure" they won't be able to do anything once they are here.

All this said, I don't want anyone to think I perceive the doctors' information as useless. Of course not.  They provide valuable medical information to us, and, provide care for these children after they are born that is life saving.  All I'm saying is, when it comes to predictions, that's where the advice should stop.  We should appreciate the medical information they provide, but then realize that they, like us, really don't  know what is in store for our kids, so we should then just take a day at a time. Let the medical information help us  - but be cautious to extend that to any sort of "doomsday" future ... let us be that ray of hope for our children and just keep fighting for what's best. 

Friday, June 10, 2011

3, 2, 1, Contact

I received a phone call today from the Nurse Practitioner who works with Dr. Kurtzburg at Duke University doing the Cord Blood infusions with Hydro babies.  She was extremely nice and walked me through the entire process.
There is an option to deliver at Duke, so Meagan can have the stem cells as soon as possible - however, this is quite a logistical nightmare with our other girls' schedules and 2 of them being in school.  As much as we'd love to do that, it is also important we keep our regular schedule, routine, and surroundings for our other 4 daughters since there will already be so many changes after Meagan is born.
We are opting to deliver here with my regular OB - whom I completely trust.  The Nurse Practitioner explained to me that Duke would send us a Cord Blood Collection Kit 4-6 weeks before Meagan's birth.  I have to take it to my OB, go over the process at my appointment, then I am to take the kit home with me until delivery day.  On delivery day, I bring the kit with me, and Meagan's cord blood is collected at birth.  Brian then has to call Duke and let them know her cord blood is on the way, and they will 'pencil me in' for an appointment within 4-6 weeks for Meagan's infusion.
After Meagan is checked over, and shunted, she will be in the NICU.  When she is released from the NICU, we are to then contact Duke again to let them know of her approval to go home/travel.

She said the way it normally works is to arrive on a Sunday, check in, and then come back on Monday for all the clinical checks (thorough physical exam, possible bloodwork, review of all MRIs, scans, and discharge papers Meagan received from her birth).  Then, we go in Tuesday for the infusion - apparently the infusion itself only takes 10-15 minutes, but, she will be there a good part of the day for prep and after-infusion procedures.  We can take her home (or to our hotel) that day, and we have to stay the night.  Once she gets the all clear the next morning from the doctor at Duke, we are clear to drive home!

She said if they get a good capture of the cord blood, babies can have anywhere from 2-4 infusions since they are so tiny.  They will follow up with us by phone and if and when Meagan gets another infusion, we set that up with them and go through the process again. 

She was VERY nice and explained alot - I feel like I have a little better grasp of this procedure and what exactly our schedule will be at the time we travel to Duke. Another great day of information gathering!

Thursday, June 9, 2011

Photos: 21 week Perinatologist anatomy/brain scan

Side View:

Image of brain on ultrasound

 Image of brain with her ventricle measurements: 19mm on right side and 20mm on left side.

Photos: 20 week routine ultrasound

Meagan's profile - legs bent above head - first notice of Hydro (notice how the head is all black, which is fluid.. it should be grey-ish, indicating brain matter)...  (OB kept all top of brain pictures to send to Perinatologist)

Perfect little feet!

Meagan opening her mouth - probably laughing at me. Hang in there sweet girl.

Wednesday, June 8, 2011


A few great things happened yesterday:

1. I was able to come in contact with more Hydrocephalus families. Thank goodness for the internet! I emailed a few moms who I found online via their blog about their personal journeys with Hydrocephalus.  One of the moms invited me into a Hydrocephalus Famlies chat group!  I have been able to communicate with them online - two famlies that are even in our immediate area.. and see the same Neurosurgeon!  They are giving excellent advice - and proving to me that the doctors, while knowledgeable in medicine, are WRONG when predicting prognosis. I've come to find through these familes and their Hydro children that NO one can predict prognosis. I've emailed with moms who had very severe Hydro and horrible outlooks who have now basically normal 3 and 4 year olds... and with moms whose children had milder cases and developed other problems later - and also with moms who have had complete opposite outcomes. Which means? There's just no way to know! So may as well just learn all the facts on the whole spectrum of possibilities so we are well prepared.... and then roll with the punches!

2. I heard back from the doctor at Duke already! We emailed her to ask about bringing Meagan for a cord blood infusion after she is born and stabilized ... she wrote back within 12 hours and said she'd be happy to work with us! They are sending us a cord blood kit so we already have it to bring to delivery - she said once Meagan is stable and has her surgery/is released from the NICU, we can arrange a trip to Duke to have her first infusion!  This has shown promising results in Hydro babies by infusing them with their own unharmed stem cells as the brain stretches out and 'regroups'.... we hope it will help Meagan too and are excited to be in the first steps of communication with Dr. Kurtzburg out at Duke! She is doing amazing work!

Aunt Katie, Uncle Mike, Reagan and baby - you may have some visitors at some point since you are the closest ones to Duke we know! :) I'm looking forward to little Meagan invading your home! haha

Termination, shmermination

The more and more I lay around thinking about all that was told to us, the more annoyed I get, to be quite honest. The amount of times we were "advised" to terminate, or asked if we would consider it were rediculous... (and I'm sure we'll get more of these questions as we proceed). What's even worse is the sly little way the counselor kept repeating the same question - as if I wouldn't "catch on."

Hey, guess what! Just because our daughter has what you think is a grim outlook, doesn't mean we can just discard her like trash.  We are human beings - she is our child. She is not some animal who we can "put down" to "put out of her misery" or "make her life free of hardships".. I'm sorry, but, that is a cop out. I'm her mom. My job is to protect her and respect her life however I can. 

Even if she has one of the fatal genetic causes of Hydrocephalus (which I doubt, but, even so..) it would not change our minds. The genetic counselor kept telling us if it was one of these things, she would not make it to birth. Ok - so what do you want me to do about it?? If she has a condition where she won't make it to birth, then it's not up to ME to then cut her life short to make it easier on ME so I can say goodbye ... or so I can "help" her along her way.  It's my job to be her mom - and whenever she does pass on, to deal with that when it happens.  If I were to lose my child, I wouldn't need guilt on top of it.  That's between our baby and GOD when she decides to go to Him. It is NOT up to us. We are only here to love her, and support her the best way we can. The rest is out of our hands. Just because we "can" do some things in medicine doesn't mean we  SHOULD.  If she is for some reason not destined to be with us, why would I ever cut short one day of her living inside of me! She is there NOW, and that is where she will stay.... right with her mommy... where she should be. If her leaving us is hard on me, tough... it's not about me. It's about her... and THAT is what being a parent is all about.

I kept thinking if one of my 4 healthy girls got into a bike accident, or choked and succumbed to brain damage -- what would we do? Give them away? Ask to "terminate" them too? Leave them on the street? I mean, come on... our children are our children - whether in the womb, here with us on Earth, or in heaven.  We need to welcome them for however long or under whatever circumstance that may be and remind them of how valuable their lives are, no matter how long that is.  We have NO guaruntee even with our children born healthy.. what kind of parents are we to decide what may be easier for them? God gives us our destinies... God gives us our crosses. We don't have to LIKE the suffering He gives us, or our children, but it is up to us to hold our heads up high and carry those crosses - or help our children carry theirs. And what would that teach our girls if we ended the pregnancy? How could they trust us completely with their own well being if we decided dealing with our baby girl's issues are just "too much?" How could we be consistent with them in our unconditional love, if we provide conditions to our love for our baby girl? It just doesn't make sense. It's better to give our girls a strong example of what parental love is - accepting the hardships (no matter how tiring or difficult they may be).

Ever since all these questions of continuing onward have been thrown our direction, I have quickly recovered from the shock at the diagnosis and have instead been thanking God that this baby is our baby.  First because I believe, after talking at length with other Hydrocephalus families, that this happened to us for a reason. For a chance to get, yet another, personal story out there about Hydro, the facts, the fears, and then the reality of just not knowing what will come, so hopefully helping others in our situation to err on the side of believing in your child. Secondly, and most importantly, I thank God this baby is our baby because I have realized, very bluntly over this week of appointments, that she may have not been safe with another family. They may have chosen to terminate her life, and I am so relieved she is with us instead. We love her and will wrap our arms around her to protect her with whatever lies ahead. Life is not perfect, so why should we care if our child is perfect? Life is about quality - and who am I to say that even in the worst case scenerio, her life has no quality? Guess what doctors - We have a God... and it's not YOU.

We decided in light of all this to name our little girl Meagan Theresa.  Brian searched and searched for names from our old lists and new ones because he wanted special meaning behind it, especially this time.  He was looking for things having to do with strength, courage, survival..etc.  And then we revisited 'Meagan' ... it had been on our list since Reilly was born and we had always liked it.  We read the meaning "priceless little pearl" ... and that was it. PRICELESS - that was the meaning we were looking for. It was perfect because she is JUST that.. and nothing less.  We chose Theresa because St. Theresa's feast day is in October - which is also the month Meagan is due. We also love the story of St. Theresa - and pay homage to Mother Teresa - the ultimate example of unconditional love of a child we had here on Earth recently.

So, sweet Meagan - you have made me realize more than ever why I am pro-life. Because now having been faced with a first hand situation, choosing your life is the natural choice... because it is NOT my choice. Keep kicking the heck out of me... and keep showing those doctors they know nothing about life because if they did, they would immediately realize how precious yours is.


The title of this post is very interesting to me... you will see what I mean towards the end of this entry...

I finally passed out watching TV Sunday night around 11:30pm or close to midnight... I woke up Monday morning... at 3AM... really?  Ugh.... I tried and tried to go back to sleep - and I couldn't. So I went ahead and got up. I did all the dishes.. I cleaned the downstairs.. I showered and got dressed.. I did 2 loads of laundry and also washed and folded clean diapers... I packed the girls bags for the day (they were going with friends while we went to the doctor).

FINALLY it was about 7am - my kids started to stir.. my husband started to make his way to the shower..etc.. and it was a "normal" hour.. and then I realized we still had 6 hours until the appointment. Sigh... we kept busy around the house, gathered our notebook where we had written questions and got the girls ready to go. Around 11am I finally walked my two little ones down to my neighbor's house -- she was nice enough to take them for the day and since she was going to be home, it was easier for my littles to go there so they could just play and nap.  I got back, got the older 2 girls ready to go, and Brian, the 2 older girls and myself hopped in the van.  My good friend was taking them for me to hang out with her kids - so we dropped them at the ice rink to meet her where her daughter had skating,  and we were off. 

I think I threw up the most I ever have all Monday morning long.  I didn't really have anything to throw up - but my body kept getting sick all morning. The nerves were almost unbearable.. my hands were clammy and if my blood pressure had been taken I would have probably been admitted to the hospital immediately.  The drive to Northside Hospital was SO long. I felt like it was taking forever but then we finally arrived.  We walked into the Women's Center and registered, and they sent us down the hallway to the Perinatal Consultant's office.  We checked in - we were a bit early, but, they said they could actually take us back right away, which I was thankful for because I felt like I was going to vomit again.

We walked back down the hallway.. the tech took us to the ultrasound room and I hopped right up on the table. Let's get going, I thought.  She confirmed our basic information with us, asked what our OB had told us, and then started the scan. 

There was baby - perfect as could be. Moving like crazy. Kicking and punching where ever the tech tried to place the probe - baby was not happy we were poking and prodding at her!  The tech walked us through each and every measurement, part of the body, organ, etc.. and then asked if we wanted to know the sex.

Now Brian and I have had almost all surprises - we only found out with one of our daughters just to see what knowing was like. Having experienced the surprise and enjoying that suspense, we really wanted the surprise again for this birth. There is just nothing like that experience - and in hindsight, the one time we had found out, it made delivery dull and unexciting -  we already knew everything about the baby.  However, being that everything was up in the air with this baby, we wanted to know. We wanted to know ahead of time so we could name the baby, and have time to bond with the baby - we had enough unknowns ahead of us on the road this time!
We told the tech "yes" we wanted to know - as soon as she got the perfect angle, I knew right away - and she confirmed - another GIRL! Brian literally DID have his 5-man .. or.. "woman"... basketball team! Something we had joked about after we had our 3rd girl... it seems God also has a great sense of humor :)  We were very excited and so happy she was safe.

The tech left to get the doctor - I knew that we were about to hear rough news.  I had researched fetal hydrocephalus extensively, and while there are wonderful stories of outcomes, I knew initially the medical information would be tough.  The Perinatologist walked in and immediately began to re-scan me.  He showed me all area's of our baby girl's brain, blood flow, fluid flow, etc... Then, his tone of voice changed, and I knew "here we go with the news".... he showed us pictures of our daughter's brain... looking down, we should see mostly grey matter (brain tissue) ... I looked up on the monitor - our daughter's brain was mostly black. pitch  black. I could see the midline, and outlines of her brain/head, but, not much else. He then explained that the black was all fluid - what we should be seeing there is the grey cloudy matter that represents her brain tissue.  Her ventricles had enlarged so much, they had filled with fluid and were putting pressure on her brain. We could see the outline of her skull - and there was a greyish "ribbon" following the skull-line around the inside - he explained that this was where we could see her brain - pushed up against her head by all the fluid. Ugh.

  He explained everything this meant - unknown brain pressure, unknown brain development, and mostly.. unknown brain damage and prognosis. He explained that normal ventricles are 4mm-7mm...with the high end of normal being 10mm. He said her ventricles were 18.9mm and 19.7mm respectively.  He said there is a good chance they will keep expanding as she grows in the womb, producing more pressure on the brain from more fluid gathering, it just depends on the rate of growth and it if slows at all.  He was able to see fluid also gathering in her 3rd ventricle and said from what he can figure, there is an obstruction or a malformation in that area not allowing fluid to drain properly to the 4th ventricle. He confirmed the diagnosis of Fetal Hydrocephalus, and told us in his opinion, it was aqueductal stenosis.  He then put his hand down next to me on the table and looked down at me... and I KNEW exactly what was coming. He asked if we were continuing the pregnancy ...

I expected this question with what I had read on fetal hydrocephalus... but.. still, when asked, it's like a shot in the heart. "Continue the pregnancy?" I thought? Um.. is there really anything else a person should do?? I am pregnant - and according to our thinking... I am pregnant until the child is born no matter the outcome.... not until I kill my child because she COULD have something wrong or COULD not develop properly when born.

I told him - yes, of course we were continuing! She is our daughter and a parent's job is to protect their children, no matter how hard. Not to take the easy way out and "put her down" like she is some pitiful animal.

He was extremely clear on my intentions, which I was glad for, and he continued talking with us. He showed us all the pictures/measurements and explained about her fluid levels. He said they may continue to expand until she is delivered, causing more damage possibly, and of course unknown things.  Next he sent us to talk to the genetic counselor so she could discuss amnio with us..etc.

We went down the hallway to the conference room..the counselor walked in and introduced herself. She mentioned again not continuing the pregnancy - I stated that no, we WERE continuing the pregnancy. So she moved on to talking about having an Amnio.  There are a few genetic causes of fetal hydrocephalus that are genetic - which also have a fatal outcome.  I asked if having the Amnio to determine one of these causes would help our baby in any way ... she said well, it may change your plans for the pregnancy. Again. I said excuse me? She explained that if she had a fatal condition it may change our plans for the course of continuing the pregnancy... Ok, officially at this point, I know she thinks *some* situation she can throw out there would change our mind...unfortunately for her, she doesn't know me :)

 I told her since the Amnio won't tell us anything at this point but if the baby has a  genetic cause to her condition, I want to wait. I don't want the Amnio accidentally causing contractions or pre-term labor just to know the "why" when that doesn't help the baby or us at all. I know the risk of reacting to an Amnio is very small, but, so is the risk for hydrocephalus.. and here we stand.  I have 4 other kids to chase and other obligations and I can't rest as much as I would like to after having an Amnio, so I compromised with myself -- I told her I was not opposed to having one, though.... I would prefer to have it at 30 weeks.  This way we still know if it is a genetic cause before she's born, but, it will be late enough in the pregnancy she would have a chance if she had to be delivered.  I could tell the counselor was not happy with our decision - but - it didn't phase me. Fortunately for my baby, I am working just fine - and this lady was not going to push me around like I was some weak person who didn't know any better. My goal is to do what's best for baby - and for now, it would have to be monitoring with non-invasive testing until she was at a later date in this pregnancy.

We left the meeting with her - and saw the Perinatologist again. I had read online from other Hydro families about cord blood infusion for babies with hydrocephalus.  We asked him about cord blood infusion of stem cells after she was born - he said in our case, he would highly recommend looking in to it.  We asked him a few more questions on our list and then were released to the nurse's office to make an appointment with the Neurosurgeon.  They said he would be contacted soon and call us with an appointment.  They also gave us her ultrasound photos - some to keep,  and some to take to the Neuro when he sees us. 

We walked out of the hospital and back to the car. Whew. Had been a LONG and trying day. Most of the news we heard, I knew was coming. I had done enough research to know - however, it was just exhausting getting it all confirmed and going through the motions of shock, sadness, anger, and almost being constantly on the defense with people to keep our baby.

Brian and I sat in the car and kind of looked at each other... digested alot of what we had heard. We were also starving - we hadn't eaten all day.. my nerves were crazy and had me dry heaving all day so I needed to eat. We decided to stop at Chipotle, (our ultimate comfort food),  get a very late lunch, talk over what we learned, and then get the girls from our friends' houses. 

The funny thing about my title is this. The more and more I thought about our experience that day, the more I saw the grave difference in perspective between us and the medical field 'helping' us with Meagan's case. To their credit, I understand they deal with things like this daily - and probably need to stay detached from it all because I don't know how I'd handle seeing 10+ cases like ours daily.  However, I also think there could be a better balance with being positive without "giving away" too much hope and putting themselves in danger for a lawsuit if things don't go so rosy for the patient.
 I think if the medical professionals were to title this post "D-Day," to them it would mean DoomsDay (dun dun dun... bring out the black cloud and think the worst).
 I would prefer to title it "D-Day" meaning Diagnosis Day. We know the worst - we are prepared for that if it happens, but prefer to think positively and send those good vibes down to our baby girl. Diagnosis Day it is - Ok.. got that.. now what's next to get my little girl here as safely as possible!

The 5 million year weekend

Looking forward to the weekend was pretty much hell after our appointment on Thursday.  The OB's office was trying to get me in with the Perinatal group as soon as possible - but there was nothing available near our house until June 30th.  JUNE 30TH??? We needed answers sooner, at least any answers we could get ... so Friday morning, I called my OB's office back and pushed them for an earlier appointment at a different location.  They called me back and said they found an earlier appointment, but it was at the office in the hospital - so we were looking at extra fees. The office we were supposed to see was a seperate medical building...so we would only have the Perinatal fee -- but, because this location was inside the hospital facilities, we'd have the Perinatal fee AND a hospital fee. I thanked her for the information - it was good to know because extra costs were a concern.. but I then said, "In any other case, I'd appreciate not going and paying more - however, in this case, let me tell you where I"m coming from... I would drive an hour and take out a new credit card if it meant getting in earlier.. ok?"  She completely understood, told me she'd check into it, and called back within an hour with an appointment on Monday. It was Friday afternoon -- wahoo! Only had to wait 3 measley days. That was SO much better than waiting a month.

What I didn't realize, is, that no matter how soon my appointment would come, a 3 day weekend can actually be 5 million years. I think Friday, Saturday, and Sunday were the 3 absolute SLOWEST days of my life... they were dragging and my nerves were getting worse and worse.

Luckily, I have the greatest husband in the world - so when I awoke on Friday, he was still there! He had decided to not go to work that day considering our news from the day before, and just have a family day with the kids and me. He got up and took us all to the Zoo... we saw animals, rode the rides, and got a treat... and that helped pass the day. 

Saturday, I honestly cannot even remember what we did - isn't that awful? It was only 4 days ago - and I have no recollection of what we did. I know we cleaned house... I believe we went to the pool some.. but other than that, I do not remember.

Sunday was Kaitlin's ballet dress rehearsal and recital - thank goodness for that because it also took up the whole day. Nonetheless, even with a "busy" weekend, it definitely took 5 million years to get to Monday.

 When I finally went upstairs to go to bed on Sunday night - there was a relief that the VERY next day was our appointment.. what I had been waiting 5 million years to get to... and then I realized as I lay there with complete insomnia... that this very night would in and of itself also be 5 million years long.

Tuesday, June 7, 2011

The First Hit

Brian and I arrived at my OB's office for our routine 20 week ultrasound.  I had done this a million times before - we had 4 healthy pregnancies, several routine ultrasounds with each, and it was always such a neat time - to see our child moving, kicking and full of life.
We walked in the ultrasound room, got ready and we were off on the adventure of seeing our baby!  The baby was SO active.. it was nice to see he/she looked so healthy and happy.  We decided to not find out the sex because we loved the surprise at the end of the pregnancy.  The tech finished the ultrasound.. she said "Well baby looks good..has all his/her parts... " .. Brian and I were smiling and then the tech said "...but I'm going to have to send you to a specialist. The baby is presenting with some fluid on the brain. Your doctor will explain more." 
At that very moment, I don't know why, a single tear rolled down from my right eye... I couldn't believe I had that reaction. I didn't even know anything yet, and my body was already reacting.  I composed myself, and sat up and got ready to go into my doctor appointment.
Brian was very worried and nervous. He had to get to work – so I told him to go ahead.. I would be fine. He left and went into the office, and I went into my doctor’s office.
My doctor went over the pictures with me -- she showed me our baby's brain. She told me where we should see grey/cloudy matter (baby's brain) all we saw was pitch black - fluid. She explained a little bit about "fetal hydrocephalus" and said the Specialist would go over things with me in more detail. 
I digested all the information... did alot of online research, and alot of worrying. I knew, that night, our lives would forever be changed.