A Very Good Day

This morning we had our monthly appointment with Maternal Fetal Medicine.  In the past these visits have been stressful, and usually it takes a few days to emotionally recover from them.  But today was different!

We got to see a pretty good picture of little Leo's face.  It was a head on shot, and he was looking right at us, he even slowly blinked at us a few times.  It was AMAZING!  I really needed that, because it got Scott and I so much more excited about meeting him, and just gave us something to be really happy about.  He really looks a lot like Claire did, but his face isn’t as round.  He looks a lot like Scott to me.

Regarding Luke, we THOUGHT he was going to be a good candidate for organ donation, but our Doctor called us back and explained that the only way they would consider him was if he had genetic testing via amniocentesis to rule out any other genetic issues such as trisomy 13, 18, etc.  She was not comfortable with doing that because she does not want to put Leo at risk.  However, what we could do is have them take blood right away after he is born, and try to have them rush the results, but there would be no guarantee the results would come back in time before he passes.  So we will just have to wait and see what happens after they get here. OR, she did say that in the rare case we get to take both Luke and Leo home with us, we would have those results ready if we needed them.

I'm a little bit disappointed about the organ donation thing.  I was really hoping that Luke would be able to help give others a good chance at life that he wouldn't have.  It just would have made me feel a little better about things.  But that’s okay, it is what it is, and we will just find some other way to give back.

In Good Times and Bad...

Honestly, it’s been a pretty good week for me this week in terms of coping.  I've been feeling pretty upbeat and positive, and I've really been enjoying the company of my boys. 

Luke and Leo are pretty active in there.  Leo is on my left side and Luke is on my right.  Its interesting to observe and experience each of their movement routines, and they seem to have their own little personalities, at least I like to think so.

Luke is my little athlete.  He kicks MUCH harder than his brother, and I often can watch the right side of my belly bounce as he practices his gymnastics.  His legs usually kick me right below my ribs, and he even punches me a bit too.  It's strange to think that there is anything wrong with him at all judging by how active he is, but I'm trying to treasure every little moment I have with him, even at 12:00 am when he's literally bouncing off the walls of my uterus.  It's a little more challenging  to appreciate it at that hour, but as long as I feel him, I know he's there, and that gives me comfort.

Leo is also quite the mover, but there is something a little more playful about his movements.  He will usually react when I poke him a little quicker than Luke will.  He moves a lot, but with less force than Luke.  As silly as it sounds, he reminds me of Scott, but with a little more attitude.  He's gentle like his daddy, but opinionated and a bit spunky like his mom. 

One of my favorite moments of the day is when I feel Leo roll to right side and squish up as close to Luke as he can get, and I swear I can feel them trying to interact with each other.  I'm not sure how much they actually comprehend each other’s presence since they each have their own placenta's, but I can't help but get the feeling that they are aware of each other through the membrane that separates them.  As uncomfortable as it is for me, it’s pretty neat to feel it happening. 

This pregnancy is quite uncomfortable, and there are days where I just don't know how much longer I can stand it.  But then I feel my boys move.  I try to close my eyes, place my hands on my belly, and enjoy feeling them both while I can.  Through the muscle pain, sciatica, Braxton hicks, heartburn and other unpleasant symptoms, at least I know I have two tiny little spirits growing inside me.  They are there when I feel lonely during the day and I have no one to talk to while I work from home.  They hear me laugh, cry and complain.  They feel me toss and turn at night, and rock them to sleep as I waddle about the house trying to do chores.  My boys are always there with me, they are my constant companions. 

As much as I look forward to holding them both in my arms, the day of their birth is rather frightening.  For now I have them both, and the knowledge that once they leave my body I will only be left with one leaves me feeling quite nervous and panicked.

Will I have the strength to endure the inevitable?  Will Leo notice the absence of his brother?  Will I be able to be the tender mother he needs?  Will my love be enough to comfort him, and will my touch be able to replace that of his twin?

For now though, they are both mine.  I will treasure and savor that as long as I can. 

My Purpose

I have decided to start this blog to document my families unique journey.  Scott and I have a 3 year old daughter, Claire, and we are expecting twin boys, which we have already named Luke and Leo.  Leo is expected to be a healthy baby.  Luke, however is not expected to survive very long after birth, he has a condition called Holoprosesencephaly (HPE)

Obviously this news has been very difficult for our family.  We are faced with preparing to welcome a new life into the world, while also preparing to let another one go.  We must find the perfect balance between joy and grief, at the same time.

I want this to be an honest glimpse into my feelings as I go through the process of preparing to meet my boys.  This will be a very raw and intimate view into my feelings about this process, and I hope it will help me cope, and maybe help other who may be going something similar to understand that they are not alone.

I only ask this - my entries are merely expressive.  I am not necessarily looking for feedback or advice unless I specifically ask for it.

Scott and I have gone though a few of the stages of grief already.  Denial, acceptance, sadness....overall I think we have been coping pretty well.  We can still laugh with each other, play with our daughter, and our life is moving forward.  We have our good days and our bad days. We watch our favorite TV shows together, hold hands, tell each other we love each other, tell dirty jokes, and we hug.  We hug A LOT. Sometimes we cry.  Scott's better at that than I am.  I would rather pull out my own teeth then physically CRY in front of anyone, but I'm working on that.  Usually I have my good cries in the shower where no one can hear.  But they are starting to sneak up on me outside of the bathroom, much to my dismay :)

The last few days have been bad days for me in particular.  I'm in my 25th week of pregnancy with the boys, and I am pretty uncomfortable.  My stomach muscles are stretching out, its hurts my belly to stand for long periods of time, I have sciatica....the list goes on and on.  These are all very annoying things.  Along with this I am starting to enter a new stage of grief.  Anger.  I haven't had this yet.  I have been moving forward with a smile, expressing my thanks for everyone's support and love (which has been awesome) and declaring how lucky we are in spite of what’s going on with us right now.  And in reality, we are lucky. We have a lovely little girl, a happy marriage, and most likely we will still be able to bring home little Leo, which is a great deal more than most parents who have children with HPE can say.

However, as I get closer to the end of my pregnancy, the reality is starting to set in.  I will loose a child.  I will have to bury that child, and I will have to be strong and care for my other two children while all of this is going on, all while recovering from a c-Section.

As thankful as I am for the blessings I do have in my life, I need to grieve this loss in order to move on and be the strong mommy and wife I will have to be in the next few months.  I need to be allowed to do this without being judged or re-directed.

I will cry.  I will complain, and I will ask "why me?" And I will want to talk about this to my friends and family. I'm a talker, and sometimes I think I have a tendency to overshare.  Its just part of my personality that will most likely not change, and sometimes I think it might make some people uncomfortable.

Here is what upsets me - when people want to "fix it".  I know most people mean well when they tell me to "Cast all my burdens on the Lord" and "Stay positive and count your blessings".  I am a Christian, and I pray.  I pray a lot more recently.  I am doing my best to have a relationship with God that will help me get though this.  But its a personal relationship.  I'm not angry at God, but I know he is not going to wave his hand and take this burden away from me.  But that does not mean I have to be excited about the situation.  I am human.  It is unrealistic to expect that I am going to wake up every morning and say "Okay God, so I am not going to feel sad today, I want you to take away all my emotional and physical pain." and then *POOF* all my sadness and physical discomfort goes away.  That's not how it works.

This is not something anyone can fix or give me advice about.  That is not what I need right now.  I need support.  I need to hear "You are right.  This is bad, but you are strong and can get through this".  I need laughter, love and yes, humor.  Lots and lots of humor.

I do not want to hear stories about how things could be worse, or I need to have a better attitude.  Most of all I do not want to be told that the things that I am feeling are wrong.  Feelings can't be wrong.

I do my very very best to have the best attitude that I can have.  Just because I may not be able to maintain that good attitude %100 of the time does not make me weak, or selfish.  It makes me human.  I need to be allowed to be human.