Ebay and Etsy and Amazon ~ Oh My!

I have taken a leave from my office for now in hopes that on my quest for whatever my quest is (still trying to figure that one out...) I can perhaps reduce the noise of constant drama (even if it is just in my head). I am however shopping! I initially panicked, thinking kids, Christmas, this is supposed to be a magical time for them ~ and I can't leave my bed so now, I am officially obsessed with getting my Christmas shopping done and it will all have to be online. I may end up liking this. My sister in law, who is the perpetual organizer (thank goodness - and very much the opposite of me) warned me that I should probably write down what I order. Probably a very good idea, I think she knows me better than she thinks.

Today, let the festivities begin... it is THE Thanksgiving dinner at my daughters grade school and Bill has hearings and can not go. Morgan cried and broke my heart because she really wants someone to go eat with her. I feel horrible, but my mother came to the rescue and had lunch with her and saved the day! Yet again, I question and struggle with what I am doing, I want so badly to do the right thing. I believe that my mother of the year award may have to wait, for yet another year.

Life is bananas - own a business - maintain kids schedules - soccer - ballet - homework - dinner - laundry - work - WAIT!!! I am looking back and trying to envision just what I had envisioned for my life. Just a decade ago I lived in a different world, just graduated from law school, living in Miami. You really do not know what life has in store for you - and yet, I would not change - MOST of it. I would however change Michael's prognosis. I know God does not make mistakes, blah, blah, blah, but I make mistakes and I would still prefer to bring home a healthy baby.

I know my life is not for everyone, but I love my family. They are what makes sense to me. They are not a burden, not ever. I had a little girl when I was 18, 18 years old, I was just a child. She is and always will be the light of my life. I take that back, many peoples lives. My best friend always used to tease her and tell her that she was practicing on being a mother on her, but truth be told we all were practicing on her and she taught us all more than we ever taught her. I got to take her everywhere with me, she went backpacking through Europe with me when I was in graduate school and skiing and camping, and you name it she went. I never, ever felt like I gave up anything to be a young mother. Certainly nothing important, I did feel like she gave up some things having such a young and selfish mother. I never doubted for even a moment that she was special and perfect and meant to be. She is the most amazing person you will ever meet in the world. Partial? I don't think so. She is kind, she is focused and much like myself in that she is constantly trying to make some sort of sense out of this world and hopefully make a difference. She turned out amazing in spite of me : ) She loves in spite of shortcomings. So again, I am so blessed and I know that I am, but still, still, I would like for Michael to be healthy Michael. The point is that I am greatful, I am, I know how great my family is and I know we are not perfect, but I still...

Every child has a distinct purpose, and Michael is no exception. I am lucky to be a mother. Now, I am just hoping that I can figure out a way for people to remember him. He is not a science project, or a non-viable fetus, he is not incompatible with life or a chromosomal mishap, he is my son and he is their brother, he is part of our family. I could not ever judge someone for making a heartbreaking choice to end a pregnancy like this, so I really wish or hope that maybe, just perhaps, everyone could understand and not judge us. I have certainly morphed in my thought process, but I am being closely monitored and taking each day as it unfolds. Certainly moments are painful, but some moments just are, that is living and we are living right now.

The Blood Pressure Police

Ok, so I have to admit, my nerves were a bit shot going in. They put that cuff on my arm and it started to tighten and then it stopped and started again and I started thinking - Oh no, no, no, don't go up, don't go up and well, the entire office cheered. It was not great, but it was "acceptable" 137/87 which is still bedrest, but my brain gets to remain inside my head for now. Michaels heart rate is still in the 150's, nice and strong, he is not showing signs of distress.

I am thankful for this and thank you all for your prayers as I am learning. Today I prayed that I will know and appreciate God's timing as I know it is perfect, but I also know I am not, so whatever time we have with Michael, pray we appreciate it, because I know now more than ever, I can not get any one of these moments back.

Oh and just one more little thing - I am measuring bigger than I should. I am, not him. I already knew that, but the good news is they did not stick any needles into me to drain it...yet and I actually got bigger AND lost weight. The bad news is the excess fluid causes me to have contractions (yuck!) but they seem to be more irritating than anything.

Today is one more day....

A parents love is unconditional - it just is. It does not matter what they look like or what problems they have or the birth order, they are children/babies and they are all special. Michael likes mashed potatoes and he does a little happy dance when I drink cranberry juice, that is especially fun. I will try to remember all of these things. My first, Jessica loved Italian food and McDonalds hot fudge Sundays (with nuts), Abbi loved fruit (specifically strawberries) and Morgan loved Mexican food -ok, I know I was eating it, but they were all happy when I ate it and did little jigs and sweet Michael is no different. Bill and I know the harsh reality that looms for Michael, and the decisions we have made to carry him as long as we both are capable. We are sad that he is not intended for us to keep. Our faith and love for each other and our family are what is helping us make these difficult choices. We have been given this child and while I am terrified every other moment, right now he is very much alive and right now and I know there are risks for me as well, but I have a peace with my care and convictions so pray we make the right choices and I would really like to meet Michael, but if it is not meant to be please pray we have peace with that too. If you are out there, please, please pray that Michael is at peace now and when he goes home. My wishes are not for me right now but for him and any parent understands that. I want him to be at peace in his short little life. I want to make the best choices for him. It is not about me, it is about him and whatever is best for him, that is what we want for him.

I have a 1:00 appointment today so keep your fingers crossed as every appointment seems to NOT be uneventful right now. My blood pressure creeps up when I get out of bed, so I am concerned my doctor may say no more, you are done. I have been good, staying in bed, taking my medications, I feel fine, I do not feel ready yet but I will keep posting...because, I am trying to remember everything I can right now. I know this is a short stop, I know it is not forever, I know life will go on and I know we will all be ok, but I want to remember, I have to remember everything I can.

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...