Michael's tree

I have had this orchid plant for a few years and although I managed to keep it alive, I could not figure out how to make it bloom but it grew and grew. About a month ago right about the same time we found out we were having a boy it bloomed the most beautiful bloom. 5 flowers and for some reason I could not shake the significance of 5 blooms. Five blooms, one for each one of us, but there should have been 6. About the same time I got Michaels diagnosis, the orchid died. It just died after all that time almost overnight. There are a few green leaves left but it is most definitely almost gone.



My 7 year old brought me this really pretty white flower home the other day and we put it in a little vase. She told me she brought it for me since Michael is a boy she thought white was the right color since she could not find a blue one. How sweet I thought. The next morning we woke up and overnight the flower turned pink. It was really amazing and a few days later she brought me another one and well the same thing happened. The next day she came to me and said, "mommy I know why it changed, it turns beautiful right before it dies". I had noticed this tree full of these blooms and we have lived here for a few years ~ how could I have not noticed this before??? It is full of white flowers with a few pink ones, really very pretty. Today as I was driving home the entire tree is pink and although it is very pretty, my heart stopped for a moment. I keep looking at those 3-D ultrasounds and he looks so perfect, maybe he is like the tree? I have to plant a tree for him, it has to be that tree, it is a Michael tree.

Is there an escape route

I can't imagine going through this ~ still. The hardest part right now is I can not escape. While I know this touches my entire family, they can talk to random people and those people will not know about Michael ~ when you see me there is no mistaking I am pregnant and well it's human nature (myself included) to celebrate a baby. I love him, obviously, but I do not know how to celebrate this little guy without greiving yet... I question my strength as I feel the need to find joy, but I am just not there...yet?

Today has been a hard day for some reason - I feel so sad. My sweet neighbor (whom is very excited for us) stopped me on my way out to see how everything is coming along, how the girls are doing, how I am feeling - all normal and nice questions and obviously she knows nothing about what is going on and I said "fine", thanks for asking, the girls are excited. All true and yet, it tore me apart. Then I get home and in the mail today are 2 sympathy cards for my baby that is still inside me kicking and a little teddy bear for his bassinet. I love the sweet gestures and peoples kind thoughts but I feel broken today. My husband knows I am sad and yet today he said to me, "I don't have the luxury of lying around all day like you do" I do not want this luxury. I am sad and my head hurts. I am pregnant and feel like I have failed my innocent son. Old crusty eggs apparentlly & I can not fix him. He is with me every moment of every day and I am broken. Today I want to make it stop and yet to make it stop would mean he is no longer part of our life. This is just not fair. I understand life is not fair, but this is my child and somehow every day that goes by produces more fears, anxiety, depression you name it - I am simply broken hearted today and I feel weak. I read all of these womens blogs and they are so strong and celebrate every day with their unborn children and everyday I dread the inevitable or what if he makes it and he has tubes coming out of everywhere, what if he is suffering, what if he dies before he is born, what if he doesn't. I know in my head this is just a sad day and tomorrow is a new day with new feelings. Ewwww not certain I am up for anymore feelings, yuck!!!

He is not as active today

I am concerned, it seems like Michael is less active since last night. I spoke with my parents last night for the first time about his condition and I know in my heart I had to do that before I could really wrap myself around what is happening. If this was a normal pregnancy I would chalk it up to a shift in his position, but now I worry he is getting tired. My blood pressure fluctuates enough that I am a little nervous. It was 136/96 last night and I do not normally have high blood pressure. We keep thinking it has to do with stress. I did have eclampsia with my last baby and it got pretty dangerous so I am being cautious, perhaps paranoid?

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.

Not much better...yet

I keep questioning how am I supposed to pray? Really what am I praying for? What am I supposed to do? What is the right thing to do? Not just for me but my husband, my children, his grandparents? As I was driving my little girl to school today she informed me that while she still thinks he will be fine, since we named him Michael after the angel, we need to have an angel tree for Christmas this year for him (that made me cry too ~ but only after she got out of the car). Then I asked God, "why me?" and I still have no answer, but I do have a very nervous stomach right now.

My dear husband is just so sweet he held my hand this morning before the sun came up for several hours and let me cry. I know how hard this is on everyone and I know how much he wants this little guy. My husband is an attorney so he wants to fix things and I love him more than he will ever understand, but we both understand this can not be fixed. He did call the genetic counselor today and she told him that the final results would be in Monday or Tuesday. They will not change the outcome, just tell us what kind of Trisomy 18. I am not very clear on all of this yet. They want us to keep our appointment in November ~ 3 weeks away. That seems like it is SO far away.

Ok, I am still trying here but every time he kicks and pushes it makes me cry... I suppose I feel a little sorry for myself, but it is so much more than just me. I worry about him suffering or his heart just stopping and I worry about the impact on my girls and of course my husband. My mom and dad sent us flowers a few weeks ago we just finally threw away. They were to celebrate having a healthy baby boy after all these years and I just have not even had the courage to tell them yet. Perhaps that is why we have Michael, to teach us courage? Right now I just feel grief AND he is still alive. I can't imagine what I will feel later.

Tomorrow is my regular Dr. appt. I am not really looking all that forward to sitting in the waiting area, mainly because I am afraid I will cry. I do not want to upset happy pregnant women. If I have learned anything yet, it is that everyone has a story and cliche as it is ~ you cannot judge a book by its cover.

Constant

It is three a.m. and I just had to go let my dogs outside to go potty. For the past few months I have been explaining to them that we were going to have to make some changes as they would not be allowed to wake the baby up when he comes home. We planned to let him sleep in our room with us for the first few months and of course I would nurse him. As I know, all of this is not going to happen, but, he is still very much alive inside of me, growing, and I cannot help but wonder about what may have been and why we are being dealt these cards right now. I keep searching...

Happy Birthday Morgan!

So I have to keep it together, it is my little girls birthday and she is sad about her baby brother. That is just not fair, but children are honest and Morgan especially likes to ask questions and talk, so I think she will be sad, but she will communicate her feelings. I turned my phone off after my wonderful husband wrote an email to the majority of our friends today letting them know just what is transpiring in hopes we can alleviate stress in everyones lives and also so they will hopefully pray for us and maybe help my little girls understand what is happening.

Today is rough as everything is setting in and as I come to terms with what will not be. My girlfriend Shayne (after I did not answer the phone) came over and sat with me and cried with me and it meant so much to have her here. I am not the best with words, but she knows me well and is a nurse and along with my older daughter Jessica they read me better than I read myself, pretty much all the time.

At dinner the girls decided to name their little brother after an angel ~ so he can watch over us, which makes me sad and yet it is so sweet. It still doesn't seem real. I have been awake since yesterday morning, just can not sleep yet...

Wow! An awful lot has transpired in the last week ~ I do mean awful...

We went in for a routine appointment. The baby looked great at my doctors appt the week before, the AFP test came back and they did not see any reason to do anymore testing, just a level II ultrasound which excited us as we got to see our little man one more time.

As we watched him on the screen he danced around like a crazy man, literally all over the place. The tech assured us he was in fact a boy. She spent a lot of time taking a lot of different measurements which was really what we expected, but it seemed to me that she spent a really long time on his little heart.

After awhile, my maternal fetal specialist came in and started looking at the baby himself and he explained he saw a few things that he really was not too concerned about, but they merited a discussion. He saw two cysts in his brain, which he also explained could be nothing and would likely go away. He saw a small hole in his heart which he also explained may correct itself and certainly nothing lethal. He also saw a slightly enlarged kidney that was what he called borderline by 1mm. All three of these things could however be potential markers for some chromosonal issues. My husband and I really wanted to enjoy this pregnancy as it likely our last, so we opted for an amnio to help us prepare for every possibility ~ no intentions however to terminate. We are told the results will likely take a week, but not to worry as it is such a remote possibility that anything at this point is wrong. I of course am a bit worried about Downs but also optimistic.

Fast forward to that dreaded phone call no mother ever wants to get. The genetic counselor called Monday at 4:30 and I heard her voice telling me it was not downs but that we had a very unexpected trisomy 18 that was fatal. What do I do with that? My husband finally has his little boy, my girls are so excited, we just bought him his first outfits and we cleaned out the office this past weekend to make a nursery. Fatal, really, are they sure? Miracles happen, right??? I feel him kicking me and getting the hiccups. He looks so wonderful on the 3D ultrasound. How can this be happening to us? Not us, not this far along, this just can't be real. What now? How do we tell everyone? How do we tell anyone? Boys have a 10% chance of not being stillborn after diagnosis and virtually a slimmer chance of making it more than a day if they are not stillborn.

My Fairy Tale

Routine (well sort of) ultrasound to just make sure my seemingly normal pregnancy is normal. Let me back up a tad ~ I am 41 years old and I have three wonderful daughters. My husband really wanted one more child (really he wanted a son). I although very, very happy with my three girls am very excited about monkey # 4 AND it so happens it is a boy!!! Yay!!! I am a bit aprehensive about getting too excited as I have a history of miscarriages and did not really think I could carry another child, but this one has other plans : )