The dreaded phone call...

Yes she called... Not the worst - not the best - but really what is best??? It is not the carrier kind, but it not the Mosaic kind either, it is the full trisomy 18 which is the grim most lethal kind, but also the fluke probably would not ever happen again and well now we keep going and hope for the best. Whatever that is??? I am afraid of the unknown and this is unchartered territory for us. I hate being so sad, it is not good for my family. Right now he is doing jumpimg jacks on my bladder.

One week later

One week and I have learned so much about Trisomy 18 - more than I really ever wanted to know.

The genetic counselor should call sometime today to give us the final results on the type of Trisomy he has. It is either full, translocation or mosaic. Mosaic has the possibility of having fewer problems, translocation means we are carriers and it is the least likely and full trisomy 18 is the most common. I am not sure I can hear her voice again without feeling ill and she is kind and calm but it is just really upsetting to me my doctor would not feel like talking with me and then just keeping my regular appointment as if this is no big deal. This falls in the pretty big deal department for me.


I have been waiting for about a year for a big contract of mine to close and today after over a year, I got word it is closing this week and somehow I do not feel much like celebrating.

99 Balloons

I have watched this a few times and every time I see it I cry because I know, I know that I love this child already. Knowing his prognosis and knowing what is to come does not really actually make this any easier. The only thing that is probably different is I am waiting for the other shoe to drop and I am not out buying baby things or preparing the nursery - because I know that if he does come home he will be in my arms until he is ready to go and I am grieving instead of celebrating - so in reality perhaps the amnio was not the best thing we did. We did it to prepare, not for us, but for him, to find a good doctor, to figure out where to deliver. This is just not something I ever even considered as a possible prognosis - after all even given my age, our odds were 1 in maybe 5000 after our blood work, how did this happen? Why even do the triple screen?

I don't like my shoes

So many times I have said out loud, when I have heard about a mother losing a child at birth or finding out that someone had a fatal prenatal diagnosis - "I just don't think I could ever handle that..." I should have said, "I could not handle that." Maybe if I had been more definitive, a little clearer, perhaps I would not be wearing these shoes, because I sure do not like them. They are painful and awkward, yet I have to wear them and somehow I know that I will never take them off ~ I will forever be changed because no matter what ~ even if I had the ability to take them off early, my feet would still hurt ~ somehow removing the shoes would not make me feel any better and in fact it may hurt worse. I know a strange analogy.

As I sit here, my daughter is playing with her little friend across the street and her aunt is my neighbor and has maybe 4 weeks left in her pregnancy and she is also a doctor so I am fearful the kids will tell her as she is kind and compassionate and I so do not want to upset her. Babies are all wonderful and although mine is not equipped for this world, I do not want her to be sad and worry. Do not get me wrong I am not trying to silence the children, I know they need to talk, it is just that it is hard enough.

I have to say thank God I can feel Michael moving around inside me although he is not nearly as active as my girls were, I know he is still alive and I would constantly be wondering otherwise. I know his markers are very soft and according to the doctors not life threatening right now, but I do not really understand. I understand that if he makes it to his due date, he will have big bad problems and likely live at most a few weeks, but I still do not understand why...

Meeting with my brother and sister-in-law

A friend of mine likened my pregnancy to "throwing the dice". She is in medicine and certainly did not mean anything bad by it, but I often replay seemingly innocent comments and I think so many times I am a walking reminder right now to everyone of what could go wrong. The innocence is gone. I have miscarried before and while awful and I grieved - I have to say it is really not quite the same. I know it is so hard to understand and I really, really do not think in my lifetime I will ever understand this one, no "Aha" moment to come. I feel like a statistic on some level - I don't even know anyone this has happened to as this has got to be the worst possible prognosis there is. I am not growing a science project - this is my son.

I just keep replaying the birth of each one of my girls - maybe mostly my first - 23 years ago, I had no idea what was going on, what we were having, she was never seen on an ultrasound, it never occured to me that anything could possibly go wrong. It was love at first sight, I just wanted to hold her forever. I remember her little noises, her sweet hands like it was yesterday. Then the day we were headed home a girl I went to highschool with, 12 hours after Jessica was born gave birth to a baby girl that died in the birth canal - she was stillborn. She was a few doors down from me in the maternity ward. My heart broke, I just could not imagine what she was feeling, how would she recover, how unfair, why couldn't they do anything? We were so young and yet it didn't matter - it was so awful, could there ever be anything worse? I have thought of her so many times over these years and wondered how she is.

I went to visit my brother and sister in law today and honestly my husband and I were both stressed out about the visit, not because they stress us out, but because they are walking this with us and I hate what we are going through and somehow I know they are experiencing so much of this right along with us. I felt better once I hugged them and we all cried again. Our kids were all running around and being kids and that made me happy watching them being kids.

My husband and I were talking about this earlier and we concurred we really expected the news to be we would have to endure some corrective surgery for his little heart and I was concerned about that? That would have been the best, but that is no longer our biggest concern. I fear the unknown and really what I know right now is what I have found on google and it is not encouraging.

"A child who loses a parent is called an orphan. A wife who loses a husband is called a widow. But there isn't anything to describe a parent who's lost a child".

It's raining outside

I am sitting here listening to the rain and remembering that phone call when my life seemingly changed quite likely forever. I am pretty sure I drove home in an awful fog - my poor husband had to go get the girls and come home - I suppose it was close to the end of the day, but I really think I actually stomped my feet, wishing I had not answered the phone (like somehow that would make it all not real). A birth defect, well no one wants that, but we would love this baby no matter what. I never really considered the possibility of a diagnosis that was "incompatible with life".

2009 has been very different to say the least. I went to New York to watch my oldest graduate from college - so crazy and it was so so wonderful. It was the end of May and maybe a month later I must have discovered I was pregnant. We did not tell anyone, I was terrified I would lose this baby and I needed to "know" everything was going to be ok before I told the girls. I changed doctors because of some issues I had with my previous OB and I did my homework, I really like her. She immediately referred me to a specialist although no one was certainly concerned but I have just turned 41 so obviously I am high risk, but God gave us this baby for a reason right?

Speed ahead a few months...the girls are back in school, it is August now and I am past the 12 week mark. Everything looks great and I am begining to show - it is time to tell the girls. We took them to dinner and my husband handed my 9 year old the ultrasound picture. It took her a moment but she got a big smile on her face and went bananas. Her little sister immediately wanted to tell everyone (she is 7).

Some sad things were going on and I felt very strongly out of respect for a friend of mine I was not going to announce this all over the place as a friend of ours just lost her baby unexpectedly 24 hours after birth. I went to the funeral and as I sat in the chuurch I kept thinking, please, please God I can not handle this. Please don't tell me you are preparing me for something like this. I actually had to leave, I kept crying and no one knew I was pregnant and it was open casket, I was just not handling it well. That feeling, it kept coming back, but I kept brushing it off after all I am hormonal and this is so tragic.

Then a friend of my sister in law found out her baby had Trisomy 13 - how awful, how tragic, that is the worst, he doesn't even have a chance to live - they know he is not going to live long but continue the pregnancy. I have great admiration for her, I am praying for her, in fact I am in awe at how strong she is but how can she do it? I know I am not that strong, I know I don't have it in me.

You know - everytime I am pregnant I see pregnant women everywhere. It is always amazing and I chalk it up to I am just paying attention. This time - nope - I see tragedy. My close close friend found out about 2 months ago he is going to die from a bile duct cancer. It is stage 4 and they are not treating it. I have been trying to deal with this with him and also help the girls understand. He is begining to turn yellow and he does not have much time. I need to be there for him, but I can't comprehend everything going on around me right now. It is emotionally exhausting.

I wanted to knit my little boy a blanket - I was going to do that and his baptism would be this spring with friends and family and my big brother and sister in law are going to be his God Parents, all of these things I have prepared for but his cradle will be empty.

The funny part of this, I always assumed people would have either the oppinion to terminate or to carry as long as God wants us to and they do, but we have some in the middle. Some that want us to do what is best for us, some just know there is no answer. For me, it is so hard because I know it is not just me or my decision, but I am his mother and right now he is alive, I can feel him moving inside of me - I can not explain, but although it seems like ending his life at this point is the humane thing to do to some people, I think that for the rest of my life I would have nightmares. I could never judge anyone - it is too too difficult. I do not want to make my family suffer, but I am feeling confident this is now a decision I have to leave up to God. This is not a choice I have been given.

A friend of mine told me how strong she thought I was and I reminded her that I am not - I did not not choose this and I am not strong right now. I can't even really get out of bed...

My First Doctors Appointment

My big brother is a doctor and I can not help but wonder how a doctor deals with something this sad. You go to medical school to help people - this must be so hard for someone that wants to help bring a baby into the world knowing you will be delivering a baby into heaven. We may find peace at some point, but let's face it there is not a happy ending. Less than a week ago we were picking out bedding and I was looking at a blanket with a little elephant on it for him. It was so soft and sweet and my little girls loved to be held all the time and I was so looking forward to snuggling my little man. I could find solice in having a downs baby, but this is the worst possible outcome for us as we have virtually nothing to hang onto. This morning he has the hiccups and while it makes me cry, I keep thinking, well, he is still alive. I don't really know what to expect, but I am pretty nervous. We know he has some kidney issues and we also know that Trisomy 18 can also lead to situations where he will create extra amniotic fluid which can lead to bleeding issues for the mother - me. I had some bad bleeding after my first baby and so this is a potential issue for me anyways so I have to admit I am a little scared now. I do not know if we want to do this again, I can not think about that today. I have been blessed with three daughters and I want to be around for everything they do.

After I got the girls ready for school I walked out onto the porch to hug my husband, he was outside watching the birds sing before going to work and he is so, so, sad, but through my grief I feel like I don't know how to help him. He takes care of us, he takes care of everyone and always puts on his "game face" but this is his baby, his only son and I at least get to feel him moving around inside of me, he does not even get to experience that. Again, not fair.

Last night Abbi came in to our room to say goodnight. I was in bed, so she pulled the covers down to kiss her sweet baby brother goodnight. This morning Morgan reminded me that in February when the baby comes she does not have to go to after care anymore because we decided I would be staying home with Michael. I am just not sure what to do with these things. I told them both yesterday that Michael is so sweet and special that God would take him right back to heaven to be with him. They listened, but they were not buying it.