The count down...

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...

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.

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.

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.

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.

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.

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