I have less than a week with Michael so I am going to try to post everything this week, so I don't forget? I can't imagine forgetting, that seems impossible and I hope I do not, but, this is what I feel I need to do.
So today is the beginning of urine collection number 2! Why are they doing this you may ask... well, we asked too. If they are inducing anyways, why does it really matter? This is how I understand it, they are looking to see how well my organs are handling the stress of the pregnancy, specifically this high blood pressure. I have the elevated liver enzymes and now they are checking for signs of kidney failure. There has been no indication of this in my weekly visits so I am assuming it will likely be clear. I am told that they need this as a baseline and the results they received from the hospital were "not complete" whatever that means. Anyways they do not appear to be too concerned which may or may not be good considering they were not concerned about Michael after my level 2 ultrasound and triple screen results. I am concerned that they missed something, well obviously they missed something. What exactly I am concerned about I do not know. I do know that in some cases preeclampsia can show up for up to 6 weeks after you give birth. That is kind of strange since the only remedy for preeclampsia is delivery. This is probably why I do not have M.D. behind my name. I can feel the toll this is taking on my husband right now and it is stressful and making him tired. He is not a good sit around the house kind of guy, actually neither one of us really are, but kids absolutely can not sit around the house and last week they had the entire week off! My friend took them out to lunch one day, my sister in law came over and got them several days last week. She has a baby and pre-schooler of her own so I think perhaps she earned her "I am a saint badge".
I have taken much for granted with my healthy pregnancies and healthy babies. We all do, it is normal. After nine months of pregnancy, raging hormones and weight gain followed by painful deliveries and sleepless nights... I remember coming home with my youngest and thinking I would never get to sleep through the night again. I could barely find time to brush my teeth. Children are miracles, all children. Morgan came into our room last night and was all excited because she saw something on the Internet about a baby living for 2 months with Trisomy 18. My heart sank a little. Mainly because those are not realistic expectations for a preemie baby with Trisomy 18, given the fact that what would be needed to keep a healthy baby alive would not benefit Michael anyways, but also because I was thinking how could she possibly be excited about a mere 2 months and then I realized how insightful that really was. 2 months, in reality any time we could have with him would be a gift. I keep trying to keep everything in perspective - what I really want is what is best for Michael. I don't know what that is, so I have to try to genuinely put my wants aside and pray for what is best for Michael. Every parent certainly understands this, since we can't keep him, please, please, please ~ don't let him suffer.
A note on the Duggars - Ok, who doesn't know who they are? 19 kids??? Seriously amazing - one miscarriage and all healthy children that is amazing! Don't judge me, I am stuck in bed, so I can't help it, sometimes I watch. (OK sometimes I watch Jon and Kate plus eight too ~ shhhh) I digress, initially, when I first saw them I remember thinking, how could anyone have that many kids??? While I could not do it and I can't speak for the future right now, I can say after watching them through my different eyes I am in awe. The mother is genuine and seriously look at her, she does not look tired, she is grateful, I know some of the other kids tag team and people judge them and yet they have a conviction and look at the kids, they seem happy and well adjusted. They appear to manage a whole lot better than I do with my small crew. I wonder why God gave us a child with these problems? Lethal problems? I wonder if He thought we could not handle a viable disability?
I can't help but be sad by the timing of this. Not Michael, but the bed rest part. I cannot do much and it is so frustrating. I can sit at my computer (a little obvious huh?) but I can't get out of bed, so no cooking, no decorating, no laundry or cleaning and although that sounds great, it is piling up and it's not looking pretty. The dogs, however, love it, they get to hang with me all day and they seem pretty happy about that. They do not care what I look like thank goodness...
Our journey through life ~ trisomy 18 diagnosis, life after loss and rainbow baby/babies, infertility, advanced maternal age and the new normal - dealing with grief.
Monday, November 30, 2009
Sunday, November 29, 2009
The Fish Bowl
I would say I am trying to prepare my self, but that is not completely true. I think I am trying to prepare everyone - on some level. I find myself wondering how to do that and part of me realizes that part of this so called preparation for everyone else is in reality still probably for me. I am sad, but it really makes me sad when others are sad. I suppose bedrest has been somewhat of a gift - I have to deal with this. I found a blog from another family that lost there little guy to trisomy 18 at 28 weeks and I showed the pictures to my husband and he was surprised at how tiny he was. It is so hard to imagine him being so small partly because I am so big. When I lie down I can feel feet on one side of my hips and a head literally up under my chest. He is a lot like a fish inside a fish bowl and I am the tank. Kind of a strange analogy, but the girls understand this and it helps me prepare them for how tiny he really is. The ultrasound tech laughed when I asked her if there was more fluid. She said she did not even have to measure she could see all the space around him and assure us he had a lot of excess fluid. I keep trying to step out of my body and remember that Michael is dependent upon me, but he is a completely separate person and he has a purpose. I don't want to be consumed with so much grief that I lose that for myself and for others.
I have stretchy pains that literally take my breath away and yet, I know this is the time I have left with him. I know he is not suffering so I can not complain because that was my only wish. I am stuck in bed missing my most favorite time of the year but and Michael won't get to spend it with us which makes me very sad, I can't help that.
I have stretchy pains that literally take my breath away and yet, I know this is the time I have left with him. I know he is not suffering so I can not complain because that was my only wish. I am stuck in bed missing my most favorite time of the year but and Michael won't get to spend it with us which makes me very sad, I can't help that.
Friday, November 27, 2009
Black Friday
Well, I am up and Michael is up too, but we are not shopping, not in the malls anyways. I am trying to come to terms this morning with the doctors orders to induce and when I think it through (and google more...) I know it is the right decision, but I am disappointed I could not somehow make a difference. Get my blood pressure under control, somehome reduce the fluid around him by my diet so he could get a little bigger ~ all irrational I know and yet, this is what I am thinking about. The nasty reality is that if they do not induce, he will likely die inside of me and or I could have a stroke or some type of organ failure. He is breach and all the fluid when it comes out will potentially cause placental abruption. Poor little guy just has everything going against him now. He is so active inside me which suprised the doctors again. They always laugh at him when they are doing the ultrasound because he won't sit still. Funny I don't always feel him, but if I get in the right position, I can usually feel him doing a dance and on ultrasounds he is ALWAYS doing a dance. The ultrasound tech this time was so kind, she immediately asked me his name and then referred to him by name the entire time, very kind and the doctor did the same thing. They see all the Trisomy babies in the area and told us, they really do not see many Trisomy 18 and 13 babies, because most people miscarry in the first trimester. Pray pray pray he does not suffer, I worry most about that, this is my job to make him comfortable. I again asked the doctor at my appointment if he was suffering and he said absolutely not. They are going to have hospice at the delivery to make him comfortable if he is born alive. He is only about 1 lb 10 oz even though I am HUGE, hopefully this is giving him room to lounge for the week. I look like I am full term, which happened in less than a month.
Here is the vanity sneaking out - I always breastfed and I always have the dreaded pooch for a minimum of 6 weeks (ok usually up to a year) and someone ALWAYS asks after I have given birth, when am I due? I am really dreading that and hopefully I will have some magical quick recovery. I know that mothers lose babies, but no one ever thinks it will happen to them. I still am sad and yet, I am prepared on some level. I think of mothers that go full term and lose babies and then have to come home to a nursery and answer questions and so on some strange level, I am blessed to be able to have this time to prepare. I read a lot of forums right now, and most women will tell you they would never test because they would not do anything different and why run the risk? While I understand, I also would rather be prepared, whether it be surgeons or hospice. It's not because we were not willing to take a baby with imperfections, it's because we wanted to give our baby the best chance at life and to know his prognosis gives us the ability to make really tough, but informed decisions.
Here is the vanity sneaking out - I always breastfed and I always have the dreaded pooch for a minimum of 6 weeks (ok usually up to a year) and someone ALWAYS asks after I have given birth, when am I due? I am really dreading that and hopefully I will have some magical quick recovery. I know that mothers lose babies, but no one ever thinks it will happen to them. I still am sad and yet, I am prepared on some level. I think of mothers that go full term and lose babies and then have to come home to a nursery and answer questions and so on some strange level, I am blessed to be able to have this time to prepare. I read a lot of forums right now, and most women will tell you they would never test because they would not do anything different and why run the risk? While I understand, I also would rather be prepared, whether it be surgeons or hospice. It's not because we were not willing to take a baby with imperfections, it's because we wanted to give our baby the best chance at life and to know his prognosis gives us the ability to make really tough, but informed decisions.
Wednesday, November 25, 2009
Such a wiggle worm
I can not help it, he is just so stinkin cute. We got to see him and he looks so sweet ~ he kept shaking his head no while they were doing the ultrasound, which I will attempt to post. He was very active again and his heart sounded great. He was keeping up with his growth 3 weeks ago and unfortuneately, as expected, that has slowed down. He is now in the 22nd percentile and this is expected to continue. His kidneys still look ok, his cysts are about the same with the fluid continuing and his heart is still enlarging. I noticed clenched little fists today, which was not noticed before. I saw a new doctor today and he was very kind, but he walked in and did not know initially that we had already been diagnosed with Trisomy 18 and asked us based on the markers if maybe we would consider testing, which actually was understandable based on what they are seeing now. We told him that we already had the amnio and confirmed Trisomy and he then took a few moments to look at our file and slowed way down to talk with us. My blood pressure was up in the 148/100 range so not great, but the true problem is that at this point Michael is now slowing down. It is hard to hear that as we knew the prognosis and yet, still somehow we all hoped for something a little different, you know one of those stories with a happy ending perhaps a miracle? I have more fluid this time, which explains why I am so uncomfortable. He is also breach which is upsetting, because they are not letting me go more than another week...yes, it is time. I am not ready, but will I ever be ready? Funny how at the end we are all so ready to NOT be pregnant anymore, but I know this is all I have and I am just not ready to give him back yet. The risks to my health and the fact that he will not benefit from being inside of me anymore are reality right now and I have just a short time to prepare. Bill and I went to go look for an outfit. Some type of preemie outfit and I thought I was ok, until I went into Gymboree and looked at this little shirt that said "baby brother" and well, I was not ok, I kind of had to exit stage left before I lost it. He is just going to be so tiny. We have not told the girls yet, as we are letting them enjoy Thanksgiving, but keep praying we have the right words to help them understand. Before it was possible he may come home for a few days maybe even a few weeks or months, but that is no longer, now we are praying he can make it through labor...it's going to be rough, we know were going into the hospital and we know we don't get to keep him.
Tuesday, November 24, 2009
Anxious about tomorrows ultrasound
I can not turn my brain off right now. My ultrasound with the specialists in Pensacola is tomorrow and I am petrified they're going to put a needle in my belly... Fear is not good, but I can't stop myself from being afraid right now. I fear for Michael, my other children, my husband, my marriage, my health...labor - that really scares me. Ok, I will post tomorrow because I have to attempt to sleep tonight so my blood pressure is ok. Please pray or send positive thoughts, whatever you can spare, that I find strength and peace so that I am not painfully consumed.
Oh and hopefully they will give me ultrasound pictures so I can share his pictures.
Oh and hopefully they will give me ultrasound pictures so I can share his pictures.
Friday, November 20, 2009
My neighbor had her baby!!!
Hooray for a healthy baby girl! Thank goodness. I will forever celebrate every person on the planet earths healthy baby. They are a reminder that miracles happen.
My kids have figured out that I can not chase them right now and they are being a tad sneaky... I can not look in their normal hiding spaces and they have discovered this. They are 8 and 9 so it's not like they're hiding "bad" things, but they would absolutely prefer to never brush their teeth, drink coke and eat nasty food. They hide candy and what nots from me anyways so we may end up on one of those hoarders episodes before this is all over with.
So, I have a lot of time to google right now and todays theme was a quest to find out if Michael is sufferinge. Doctors have assured us he is not, but they do not do weekly ultrasounds and I really want to make certain that he is comfortable and that I am armed with all information to make sure that he is. I know babies feel pain at this point in gestation. This is something I just really need to know. I need this to be about him and not me. My doctor wants us to write a birth plan - not as simple as I thought. What exactly do we mean by comfort care? Crap! Really? Can't someone else please make these decisions? I know it seems like this is a religious choice, but today I realized that it is not just about religion. This is about my belief that Michael's life has meaning and I am really trying to find a way to honor that. Maybe I am just too weak to make any other choice. Now, before someone thinks anything bad about me or my thought process, I need to clarify. This is us, our decision - not just mine and I do not think because someone terminates a pregnancy because of a medical reason that child has no meaning to them. I know that is a hearbreaking choice. I logically understand that and acknowledge it is painful. It's not a debate to justify my decision, I know it stinks, I am living it and question my sanity daily. I was talking with my husband earlier as our appointment is quickly approaching with the fetal maternal specialist and with this excess amniotic fluid and my blood pressure, I of course get nervous they will want to induce soon. I also know Michael will get worse and even though I expect it, I still fear it. The reason I bring this up is simply because, I told my husband there is just no way I can "choose" the day for my son to die. Today Michael stuck his baby butt way out today and I pushed on him and he jumped back and then kicked me hard, as if to let me know he is still fighting and if he's still in, well we're in too.
The girls came bouncing in from school today with flowers that must have been delivered at some point today. So very sweet and thoughtful and I LOVE flowers, they are happy flowers too - gardenias. Yet, it is so strange to receive condolences for a baby that is still very much alive. I really love and appreciate that our friends are celebrating his life and thinking about us during this bittersweet time.
My kids have figured out that I can not chase them right now and they are being a tad sneaky... I can not look in their normal hiding spaces and they have discovered this. They are 8 and 9 so it's not like they're hiding "bad" things, but they would absolutely prefer to never brush their teeth, drink coke and eat nasty food. They hide candy and what nots from me anyways so we may end up on one of those hoarders episodes before this is all over with.
So, I have a lot of time to google right now and todays theme was a quest to find out if Michael is sufferinge. Doctors have assured us he is not, but they do not do weekly ultrasounds and I really want to make certain that he is comfortable and that I am armed with all information to make sure that he is. I know babies feel pain at this point in gestation. This is something I just really need to know. I need this to be about him and not me. My doctor wants us to write a birth plan - not as simple as I thought. What exactly do we mean by comfort care? Crap! Really? Can't someone else please make these decisions? I know it seems like this is a religious choice, but today I realized that it is not just about religion. This is about my belief that Michael's life has meaning and I am really trying to find a way to honor that. Maybe I am just too weak to make any other choice. Now, before someone thinks anything bad about me or my thought process, I need to clarify. This is us, our decision - not just mine and I do not think because someone terminates a pregnancy because of a medical reason that child has no meaning to them. I know that is a hearbreaking choice. I logically understand that and acknowledge it is painful. It's not a debate to justify my decision, I know it stinks, I am living it and question my sanity daily. I was talking with my husband earlier as our appointment is quickly approaching with the fetal maternal specialist and with this excess amniotic fluid and my blood pressure, I of course get nervous they will want to induce soon. I also know Michael will get worse and even though I expect it, I still fear it. The reason I bring this up is simply because, I told my husband there is just no way I can "choose" the day for my son to die. Today Michael stuck his baby butt way out today and I pushed on him and he jumped back and then kicked me hard, as if to let me know he is still fighting and if he's still in, well we're in too.
The girls came bouncing in from school today with flowers that must have been delivered at some point today. So very sweet and thoughtful and I LOVE flowers, they are happy flowers too - gardenias. Yet, it is so strange to receive condolences for a baby that is still very much alive. I really love and appreciate that our friends are celebrating his life and thinking about us during this bittersweet time.
Thursday, November 19, 2009
Morgan's Note
My youngest has been so excited and although she knows that we do not expect Michael to live, her desire and innocence are sometimes overwhelming. She asks some pretty tough questions. Last night in bed she brought me this letter for Michael and asked me if he would at least be born alive? Well, I can't answer that I told her and I explained that I knew the answer she wanted to hear, but that I needed to be very honest with her and that it was very unlikely that he would be born alive. I told her she could ask me any question she wanted to ask, so she asked why they can't fix this and what does it actually do to him? She cried then and asked why he couldn't live for a year? I cried with her and then she did it, she asked the most difficult question of all. Why did God give him to us if we can't keep him? Seriously? Come on, I am hormonal anyways, not fair! I thought about the whole he is so sweet and perfect, God wants him back answer, but nah, that could be scarey or what if she thinks she is not sweet and perfect? So I did it, I answered her, in my most profound moment, the answer was... drum roll please... "I don't know". I know deep. Their is no instruction manual for this and I often fumble. She then asked me if we could have another baby ~ ummmm
Wednesday, November 18, 2009
Michael's Hat
My husband just brought this package into me and inside was Michael's hat. This has been an obsession of mine for over a week now. I have had the scouters out looking and we just could not find it. Well low and behold, this wonderful woman named Kathleen made him one, make that two because we just are not sure how big his head will be and it is perfect! My husband smiled and although I realize this is difficult on him on so many levels, he is trying so hard to be supportive but I could tell he liked it. Few things are going to be perfect enough for such an angel.
For reasons beyond me, sometimes this just happens, but I just ran through this in my brain - going home without him. How am I going to do that? I really, really hope I don't have a C-section now. Can you imagine giving birth, having your baby die and having to stay on the maternity floor or even in the hospital at all? When he goes, I really want to go too. I don't want the funeral home to come get him and then I have to stay. When I was in the hospital last week, the lady next door was screaming (just like in the movies) and then I heard the baby cry and don't get me wrong, I was happy for them, but I kept thinking, that's not going to happen to me... My hospital plays rock a bye baby over the intercom every time a baby is born, what will happen when Michael is born? Ok, so perhaps I have had too much time inside my head today.
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.
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.
Monday, November 16, 2009
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.
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.
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.
Friday, November 13, 2009
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...
Wednesday, November 11, 2009
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…
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…
Tuesday, November 10, 2009
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.
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.
Tuesday, November 3, 2009
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...
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...
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