Our Night in the Hospital

Well I went in to my appointment and my blood pressure was pretty high (bottom number 100 or over - that apparentlly is not good)so I was taken to labor and delivery and I got to spend the night. My liver enzymes are not right and I am waiting to see about potential protein in my urine. They proceeded to give me steroids to prepare his lungs for a potential brief greeting. I am scared to give him back. He is kicking and pretty happy inside his world right now and it breaks my heart to have to deal with reality. Again I do not know how to pray, what to think or how to get ready. My poor husband is exhausted. He drove to his grandmothers funeral and had to rush back from Tennessee to help make these unfair decisions. My mother dropped everything and is here taking on the mommy role (please pray for her and the girls). I will keep you posted - they are talking about sending me to another hospital but we shall see. If we can hang on for another week it may make a difference in seing his eyes - I am not sure, I know it is not up to me now, so just pray or send positive thoughts that he does not suffer and neither do the girls. I can not ignore the pink elephant (or blue in our case) anymore...

I am nesting in my own way...

Today it occured to me I have to find Michael an outfit. It has to be perfect as it will likely be his only outfit. He needs a snuggly blanket too and I am nervous because I can't really go far as my blood pressure keeps creeping and as much as I want to prepare I don't want to cause anything to happen. I realized today how scared I am. I am afraid to carry him because I know I have to give him right back but I am his mother, and this is the only thing I get to do for him ever. I know we have more decisions ahead of us, but they aren't picking out strollers or bedding or car seats - they are things like what kind of service should we have and should we cremate him? How will our other children handle this? Funny as time marches on - I can't help but wonder what is best for Michael? What is best for the girls? How hard will this be? Will our knowledge make any difference? Will this change us forever? It seems like maybe it already has. I don't want to be sad forever, I know I have a duty to not be sad, but I am right now. My body after this baby is not going to understand I don't have a baby - another cruelty? Maybe not. I told my husband the other day that it is kind of hard to go through all of the pregnancy drama and the fluid and weight gain when I can't really keep my eye on the prize... my prize maybe is feeling him inside of me for today.

I read this earlier from The Little Prince.

As the little prince was falling asleep, I picked him up in my arms, and started walking again. I was moved. It was as if I was carrying a fragile treasure. It actually seemed to me that there was nothing more fragile on Earth. By the light of the moon, I gazed at that pale forehead, those closed eyes, those locks of hair trembling in the wind, and I said to myself, What I’m looking at is only a shell. What is most important is invisible…

Hurricane Ida

Hmmm... It is a Florida "snow day" and I did nothing today. Most everything was closed due to the Hurricane and we live in Destin FL. I have a cold, so I stayed in bed and called banks (for work) and researched Trisomy 18 much of the day. I have not learned anything new - other than the same old same old...it is lethal and incompatible with life, really not much hope out there. My blood pressure has been all sorts of fun today and the only thing I seem to be able to do to control it is bedrest. It got up to 149/123 which actually even scared me, but tonight resting it is down to 125/85 not great, but better. My poor husband is in Tennessee with the 2 little girls for his grandmothers funeral. I really wanted to be there for them. I know he is sad, it was so hard to tell the girls. They are so confused right now. Their grandmother just died and they know their new baby brother is going to die and that is so hard for us let alone them. My prayer now is that God's timing is perfect. I want the holidays to be magical for all my girls and yet I have this desire to protect Michael as long as I can but I can not burden the rest of my family - these are certainly tough decisions and if only someone could just appear and give us all the "correct answers" to life - nope that is out of the question.

My entire family was here for the weekend and it was such a great weekend. We talked and we cried and we talked some more. They are praying and supportive and I know this is hard on them too, which makes my heart break... I love them and need them more than they will ever know. I am blessed.

The ultrasound after the amnio...

Ok, so today is the ultrasound after the amnio results. I can't help but worry and yet, what could I possibly be worried about? They can't really tell me anything worse ~ could they? I am worried that perhaps because they really thought everything was ok, that maybe they did not see some things that they would have otherwise been looking for. I am a worrier anyways and I know some of it is silly, but I am his mother and I do not worry any less knowing he may only be with me while he is in my tummy. I am doing better, I still cry, but I cry less. I at least have him while I am pregnant, which may be very hard for most people to understand, but it is just very important to me that he is not suffering. I do not feel as much movement these days but everyonce in awhile he will give me a big kick and let me know he is there. I am treasuring those moments as I know they may be not be many. I will post after our ultrasound. I will TRY to post pictures too.

Well I just returned - the visit was about 2 hours, but they answered all sorts of questions for us. My blood pressure elevated, 140 something over 94 and I do have extra fluid : ( so they are monitoring me weekly now... The baby is measuring a week behind, but within normal. His kidneys look really pretty good, still a little enlarged but they are not really worried about that. One cyst disappeared but the other now has fluid, so he is now hydrocephalic ( I think that is how you spell???) His heart does not look better and is now enlarged - so overall, not a happy visit, but it really is what we kind of sort of expected ~ short of a miracle. Just not fun but we are still hangin in there, but the doctor does not seem to have a lot of hope for a live birth. The genetic counselor told us today that she has never seen a live birth of a trisomy 18 baby which is very disheartening, but we wanted honest answers and we now have them. Oh and he assured us that Michael is not suffering right now, he promised me this and I somehow beleive that he knows this. I have an appointment in three weeks to potentially drain fluid from my belly which is very upsetting because I am assuming that may involve needles and I am not a fan, but I am also a big fan of breathing so I may have to compromise.

Funny as I was sitting in the waiting room with the other pregnant women, it did not upset me, that is somehow so peaceful. I am not sad, I am not jealous, maybe a little envious, but I was happy to see healthy happy pregnant women. I know now more than ever how precious life is and how incredibly fragile it is. I think I took so much for granted and I pray that perhaps this is my lesson.

When I came out of the ultrasound, the counselor tracked me down to hand me a card that "someone" delivered to the receptionist while I was there. It was a card from a friend of mine that just lost her baby unexpectedly a few months ago. How incredible people are. How amazing people can be. I spoke with another woman in my expecting club that lost her son about a year ago and she sent me books and talked with me, just amazing how wonderful people can be. How selfless, when I know they have their own pain, I just feel so fortunate today. I can only hope to be that strong and compassionate some day. The lady from my expecting club is obviously expecting again and still was willing to reach out to me ~ which she will never know how much that meant to me...

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?