Heaven couldn't wait

"There is no footprint too small that it cannot leave an imprint on this world."

I need to write, but I would be less than honest to not admit feeling let down and defeated. I miss Michael. Michael was perfectly made. Let me see if I can do this. Bill and Jessica and I got up early to go to the hospital. Around 7:30 am my doctor popped in to say hello and decided to wait until after she had done a c-section to start the induction. I had the same nurse I had previously while I was in the hospital and I was so excited about that as she is just so comforting and I already knew her. Around 9:30 my doctor came back in and did a quick ultrasound and Michael was still head down and his heart looked good so the induction began. My contractions were fairly constant, but I did not progress very quickly, so they started additional pitocin around lunchtime. Around 5:30 my Dr. came back in to check on me and broke my water. There was unfortunately a lot more fluid than we all expected and the excess fluid came out with such force that it likely caused Michael to spin a bit and he managed to get caught up in his umbilical cord and the placenta also pulled away a bit. I quit feeling him move after my water broke and in my heart I was afraid he was already gone. After 9 pm I felt him coming and he was delivered at 9:35 pm with Bill and Jessica watching and he came out still. He looked just like his daddy, he had his nose, he was perfect...he did get my toes. We got a lot of pictures and little feet prints and hand prints and I held him for hours. After everyone left, Bill and I said our goodbyes and the funeral home came to take him, that is hopefully the most painful experience of my entire life. It literally took my breath away. Handing him over and knowing you will not see him again in this lifetime. Kissing his little forehead and wishing so many things... I couldn't actually do it, Bill had to hand his baby, his son, to a funeral director in the middle of the night. We do know that God answered our prayers and feel a peace. I have my moments right now, but we prayed that Michael would not suffer, and that Gods will be done, not ours, so I have to believe His plan is better than mine. Our nurse had the day off and came by to see us and I think God knew what he was doing by having her stop by, because she was so sweet, she told us she knew we wanted to meet him, but how difficult it was for her personally see these babies try to take a breath - so God did answer our prayers. I love Michael so much and the vortex of emotions and hormones won't allow my head and my heart to all be on the same page just yet. I miss his little feet up in my ribs and his little fingers pushing on everything. I want to hold him and rock him and I will always miss him and I have to learn to adjust and live with that. I do not regret carrying him, I only wish I still was, because that was something I could do for him. I know life continues, but it is difficult to imagine my life without any one of my children.

Dear Micheal,

When we found out we were having another baby, we were so excited. I was cautious in getting too excited because I never wanted to lose you. We know that you served a purpose here. We know that God wanted you and that you are God's servant and that we are so blessed to be your parents. You were created in God's image and your short perfect life taught us so much. God knew what he was doing when he chose us to be your family. We love you unconditionally. Michael, you were made by God and kept by God. Your name is fitting, it means "Who is like God." Our doctor actually told us this as she handed you to me. Your sisters named you after an angel and that seems so fitting as you are our own little angel now. Happy Birthday baby, you will always be remembered as you have left your imprint on this world and you are so loved.

Love,

Mommy, Daddy, Jessica, Abbi and Morgan

Thank you for all of your prayers, they worked! Michael made it and we are the proud parents of a little boy! Please keep praying as we are on our way to the funeral home today and Michaels memorial service is in the morning on New Years Day! He is so special.

Baby Michael

Baby Michael was delivered at 9:35 pm on December 29th.

He was 2 pounds and 10 ounces and 15 inches long; bigger than expected! He did not survive the delivery.

Michael was surrounded by his family and was blessed by Father Tom. One of Jodi's primary concerns has always been that Michael not suffer and we are assured that he did not. We are comforted in knowing that he is at peace in the loving arms of the Lord.

The family thanks you all for the constant prayers and support. Please continue to pray for healing and peace.

Jodi will be posting again shortly.

God Bless,
Ruth Anne
Jodi's Sister in Law

Today will be the day...

Obviously I cannot sleep. I have tried. We sat up in bed with your aunt, your grandmother, your daddy and all of your sisters last night. We are all worried about today, it is hard not to worry, we are getting ready to give you back with as much grace as humanly possible. I know God will be with you and with us today, but I am your mommy and I just can not stop wanting just a little more time with you. Today will be your very special birthday and my hope and desire is for you to meet us if only for a moment, but we know heaven is waiting...

Dear Michael,

It is Sunday afternoon and my time with you is dwindling and it is so hard to prepare for that. Everyone has gone to lunch and I am watching you roll around inside my tummy. It is cold and cloudy outside, another perfect day to be inside. Last night your daddy took me out to get a few more things for Tuesday, your birthday. Kind of a cool birthday 12/29/09 just 2 days left in the remaining year. I feel like I should be doing something to prepare for you, but I do not know what else to do. We have not told your big sisters you are coming Tuesday, but we will soon. I know you are comfortable inside of me and I also know you are no longer growing and it is time, I just hope and pray for peace. I hope you know that we tried to make the best decisions for you and we have tried to keep you comfortable along this seemingly long, but in reality short journey. You have changed our lives in so many ways and your little life has impacted many people. I have had people from all over the world reach out to tell us they are praying. So many people love you. In many ways I will never be the same. I know how blessed we are to have carried you. I know how blessed we are to have so many wonderful people in our lives. You were so wanted and will be so missed. I know that your journey is not without meaning and we will always miss you and remember you. If we are blessed to meet you before you go to heaven we will do our best to make good choices and if you go to heaven before you make it into our arms, that is ok too, we know that God is in control and He knows what is best for you.

I have had some very vivid dreams about you the last few nights and none of them have been frightening at all which is comforting. In my dreams you are big and healthy and the doctor is someone I have never seen before, but he is not a stranger. This doctor is calming and he has a good sense of humor. He gave me a shot of something and I felt no pain, not even the shot. Labor was easy on us and the doctor stayed with us the entire time, as if we were his only concern. I do not know what this means, it could be wishful thinking on my part, but regardless, I am thankful. I love you.

Love, mom

Merry Christmas!

It is Christmas morning and Morgan got up SUPER early - like 2 am... she informed me (at 2 am that Santa had been to the house and stuffed the stockings but forgot to leave presents. I told her we would have to figure it out and then about 20 minutes later she informed me she was mistaken. The reason she thought this was because she "knew all of our wrapping paper" and she was looking for "the special Santa paper" she did not realize that Santa used bags this year. We managed to make her wait until 7 am to wake everyone else up, but not with out reminders from her about every 45 minutes.

Bill got us this little ornament for Michael. The gesture made me cry a little, but only because it is so sweet and it reads sleep in heavenly peace (that is probably the part that got me). As we opened gifts I felt Michael squirm and I could not help but know this is his only Christmas with us and I felt thankful to feel him and know that for today he is in his little happy place and soon he will be in a happier place, but in God's time not ours. Merry Christmas!

Bah Humbug...

I am really trying, but, I cannot lie and I am ashamed, but I am not feeling the Christmas spirit right now. I went to the doctor today and she went over what to expect next week and I reminded her that I am a big chicken when it comes to needles. My oldest daughter was with me and she made certain to let her know that I was in fact, not exaggerating. I mentioned to her again that I had not ever had an epidural and that my only induction went very fast. She said it would likely go fast this time as well and that I can decide when I start labor if I want to go natural or get an epidural. I am all for medication and comfort as long as it does not involve needles. She did not do another ultrasound, so I am just hoping he is not breech again, but if he were, the delivery would be the same so I am trying to be ok with that. I know with the excess fluid, we are already facing possible cord prolapse and then the obvious heart and trisomy issues, again - praying and hoping for a safe and peaceful delivery. Next week at this time, I will not be pregnant...

Abbi's Angel

Today was one of those days. It is difficult to explain, but I will try. Physically I feel ok, not great, but ok. The fluid, I can tell is increasing quickly as I am very short of breath. What a difference one day can make. It is easier for me to sit up than it is for me to lie down, so I wrapped presents most of the day, which is better than most years as I am frantically stuffing bags the night before. This is good, I think... Anyways, here we are just a few days before Christmas and while I asked to have Michael after Christmas for the girls sake, I did not entirely think that one through. The reason I say this is because we have to plan a funeral.. Not very festive, but we have to make arrangements for Michael. I know that I do not want an open casket viewing. We have a professional photographer coming from "Now I Lay Me Down to Sleep" and I hope we can put a little picture of him up, but no open casket. I know he will not be there, I know he will be in heaven and I do find comfort in that - so that is what we have decided. We had to choose the funeral home today and the hardest part is thinking about them coming to the hospital to take him away. Bill asked me again if I wanted to bury him or cremate him and again, I said neither. Bill thought that we could cremate him and then he could then be buried with me when I die. I told him., that sounded fine. Michael will be baptized at the hospital and I know he will be in heaven, and I do believe this, but I am still going to miss him.


My good friend Felix is sick right now. He was diagnosed with stage 4 bile duct cancer the end of July. He opted out of all treatment (at his doctors recommendation) as the cancer was already everywhere and the chemo would have just made him feel worse and it would not have helped. The cancer is in his stomach, liver, pancreas... Doctors gave him 4 to 6 weeks to live and hospice was called in to comfort him. He called me and we both just cried, this could not be happening... I called my brother, as he is an oncologist so certainly he would be able to give us some sort of hope. My brother called Felix's doctor and then called me back and the answer was the same, this type of cancer is rare and extremely aggressive.

Felix worked out of my office for a few years, he is a mortgage broker. I often bring my children to work with me and they would always make a bee line for "Mr. Felix's" office. Mr. Felix is a big teddy bear kind of guy and he always stopped and played with them and made them feel special. He even took them on trips to the mall, the playground, McDonalds and various other locations. The girls are just a little bit older than his grand babies. I explained to the girls what was happening with Mr. Felix and they cried and then Abbi, my 9 year old insisted on getting Mr. Felix an angel of his own.

As a parent, there are some moments you just can not forget. The details to this day are so clear. Abbi was 5 years old and it was just a few days before the Fourth of July. I had just given the girls a bath after spending a day at the beach. I was putting their jammies on and noticed a small little lump on Abbi's neck, right at her collar bone. I mentioned it to Bill and made my brother look at it and the consensus was not to worry. I was thinking, swollen gland, bug bite, cold, who knows? The next morning, she woke up and it grew a little over night. It was not red or warm, just bigger. I called her pediatrician thinking antibiotics before the weekend as I did not want her to be sick over the Fourth of July. As I watched her pediatricians face, I knew she was not thinking, it was no big deal - in fact it was the opposite. After that moment, things get a little fuzzy, but my brother and husband apparently had suspected the same thing as Abbi had also developed a rash and was "presenting" classic non-Hodgkin's lymphoma symptoms. The pediatrician sent us to the hospital for blood work and x-rays and Bill and my brother were already 2 steps ahead of me. We were greeted by another doctor, a surgeon that wanted us to go to another hospital in Pensacola, a little over an hour away for surgery that day. Whoa, cancer? My 5 year old? Not possible!!! Now, this next move was probably completely irrational, but at this point who is rational? I asked, no begged for antibiotics and to let us go home and enjoy the Fourth of July. My reasoning was 1. two more days could not hurt, right? and 2. maybe it was just a swollen gland? (a gland that did not hurt...) They reluctantly let us go with surgery scheduled for Monday morning at 6:30 a.m. Now in hind sight, I was a complete absolute basket case. I knew, I just knew. We cried, I got sick, we called St Jude's. I remember sitting on our porch after putting the girls to bed that night and listening to the waves and I remember begging God to make it me, not her. I remember Bill being mad. The very thought of her having to be treated and be sick was just too much. That was a very, very long weekend.

Fast forward to Monday morning. We got to the hospital and Abbi was amazing. She was calm, I was not, but I think I put on somewhat of a decent game face for her. Unbeknown to us, her very quiet surgeon went to church Sunday and asked for prayers. He said, it did not look good for this little girl and she could really use prayers. Over the weekend this lump continued to grow and was about the size of a golf ball. Abbi was also beginning to bleed into her chest, none of this was good. After Abbi was wheeled back for surgery, my friend Shayne came into the waiting area. Shayne is a walking, living miracle and her story is absolutely incredible. It always makes me cry (but in a good way). Anyways, please understand part of this miracle is Shayne getting out of bed at 6 a.m., ha, even if she does read this, she will agree with that one. Shayne's story is for another day, but suffice it to say, it's a really good one, in fact I am going to make her share it, because it is important. So it is 6 a.m. and she is there, because she is just that kind of friend. She comes in with this little beaded angel and she needs to go back and see Abbi. Shayne is also a nurse and does not like to hear "no", so not surprisingly (and thankfully) she went back to see Abbi and tucked this little angel in next to Abbi. This angel was given to Shayne when she was sick with metastatic cancer and well, without launching into that story (yet) she is cancer free. She told Abbi that someday, she would need to pay it forward. I have no idea how long Abbi was in surgery, I just remember that it was surgery on her neck (like that's not nerve wracking enough). This is a mother that can not handle her own child's immunizations (I cry). So, after the surgery, the surgeon came out and he was visibly fighting back tears. He looked at us and said, it's gone and it's not cancer. I remember my brother saying, I will never look at medicine the same way and I just kept thanking God (a lot). The point of this story is that Abbi has heard it a few times and so she thought Mr. Felix needed an angel like hers. Well she found a special angel for him and while his cancer is not gone, I reminded them that he has now lived 4 times longer than the doctors said he probably would and that too is a miracle. Miracles come in many shapes and sizes and it is usually in hindsight that I am able to recognize these gestures. That was a biggie and if you don't believe and chalk it up to science that is ok too because in reality life is miraculous, but seldom am I shown this with such clarity or seldom do I pay close enough attention. This angel is symbolic, it's not that it was magic, but the story, the act is what is important and this angel is a reminder to all of us that life really is miraculous however long or short it is.

The pickle

For those of you that do not celebrate this German gherkin tradition, let me give you the quick version. The pickle ornament is the last ornament to go on the tree. It is hidden in the branches of the tree and the first person to find the pickle ornament on Christmas morning gets to open the first gift, but most importantly, the pickle brings good luck. So every Christmas, Morgan gets my father a jar of pickles for Christmas for good luck. The point of mentioning this is because today we had Burger King for lunch and Abbi always removes her pickles from her burger and today she gave them to me. Morgan and Abbi then proceeded to discuss the luck of the pickle. We have tried to help Abbi and Morgan understand what is wrong with Michael and quite honestly, we know their is an extra chromosome in every cell of his body and we know the outcome, but it is hard enough for us to understand let alone an 8 and 9 year old, so to their defense, we get it. Abbi said, "Mommy, if you eat enough pickles - maybe Michael will make it." This is seemingly easier to explain than a miracle occurring or not occurring, until it comes out of your hopeful child's mouth. I smiled and told her the pickles would not help in this circumstance. Abbi relied, "and how do you know?" It sounds sad when I write it, but it was actually a little funny. I cannot quash the miracle argument - miracles happen everyday, a child is a miracle, Michael is a miracle but pickles bringing luck, well...


We are scheduled to go to the hospital in 10 days, I have 10 days to enjoy my son and as we get closer I do question my strength. I know we made the right choice to carry Michael and God does send little reminders of this all the time, so I feel very blessed. Morgan asked me if I was sick when I was pregnant with her, and I told her no that I was not. Morgan likes to ask hypothetical questions (A LOT) so then she asked, if you needed to, would you have been on bed rest for a year to have me? Well, of course I would have. I have been on bed rest for about 6 weeks and we have had so much support, emotional and otherwise, I am so grateful. I am not going to lie, it feels like it has been longer and it has been trying at times, but I realized when Morgan asked me this question, she realized how much we all love Michael and I realize how really short this journey is. God is teaching us and I know we are learning and hopefully growing. I also have a peace about Michael's birth right now. I know God has a plan and given the statistics, we have already come a long way. I know Michael may not make it through birth and if that happens, I know that his short life is still meaningful. Please pray that we are prepared for what is to come, and that emotionally, spiritually and physically we are ready and that we are able to be strong for our girls and that they are able to handle this as well.

Feeling guilty

It is late and Bill is sound asleep next to me. I tried to write a few times today, but I was stumped. I think sometimes I am just not clear and sometimes it is just too hard. I got a phone call today late in the afternoon from the doctors office scheduling delivery. Michael will be here sometime Tuesday December 29th, 2009 and we are hopeful he will stay with us until then. I am not going to lie, I have anxiety about this. I have not told the girls, I know they will have questions and I need to figure out how to do this before I tell them, which I probably will not do until after Christmas. I have moments where I am consumed with things such as what will that drive home from the hospital be like. The idea of leaving him breaks my heart. I feel him kicking and I want to enjoy it, but tonight I feel guilty and sad and scared for him. I know what the doctors have told us, it is not our fault...blah, blah, blah. I can not help but wonder, if I only I had done something different, or were we asking for too much? I know God is not punishing us but it just feels unfair tonight. For tonight, this journey is emotionally draining and I am not feeling very strong. I hate that I am feeling this way, but I have to be honest. All parents feel guilt, we just do. Guilt about having him, guilt about not having him, the sadness his older sisters have to endure, guilt about not giving my husband his healthy son, guilt about bed rest and everyone taking care of me and my family. I feel guilty and feel grateful. Perhaps this is what joy in sorrow is? So tomorrow is another day...

Magical Elfs

So we have an elf. The girls named him Zeus. I know, I kind of asked them (multiple times) if they were sure they wanted to name him that? Oh yes, his name is Zeus. Ok - Zeus it is! For those of you that do not know, let me give you the quick version. The "Elf on the Shelf" is a special little elf that is purchased, but it is magical. He sits on a shelf or somewhere during the day and watches over the children in the house and at night after the children go to bed, he goes back to the North Pole to report to Santa. Proof of his journey is that every time he returns, he shows up in a new location. Grown ups can communicate with the elf, and the elf can talk to grown ups, Children can talk to the elf but he can not talk back to children. Children also can not touch the elf, if a child touches elf, he loses his magical powers. That about sums it up. The reason I tell you this is because Zeus has been the focus the past few days. One morning he reappeared in a frame over a buffet table and this morning he appeared in our kitchen in a pot rack. Morgan (who can not remember to brush her teeth) wakes up at 6 am in search of Zeus. Abbi, would rather sleep and I can really appreciate that. I think about 5 years ago now, we were moving, and during this move, I found these old roper boots. They had pointy toes and Abbi asked me what they were for and I told her that they were daddy's elf boots. It was an opportunity and I took it. Don't judge me, but it took on a life of its own and while daddy got too big for the north pole, he is still magic. He can still blow on the reindeer food and make it sparkly and magical. He knows details and phone numbers that most parents do not know. He can even reach Santa in the summer. I have heard private conversations between 2 little girls that would make any grown up smile. Serious conversations.

Bill and I went to my regular doctor today - lots and lots of doctors. We listened to Michael's heart and it sounded pretty good today. I am still measuring big and yet lost 2 pounds. I requested a leave of bed rest for Christmas... denied. Oh well it was worth a try. We did go over the birth plan and that is still hard to actually say out loud, please just please make sure he is comfortable, please let him go. I am generally not patient, it is just not in my nature, I am probably not going to change and probably because I have no desire to change. I am waiting for my OB to talk to the Maternal Fetal Specialist (aka Dr. Doogie Howser -I mean that in a good way, we really like him - he just looks too young to be a doctor) and then call us back to let us know what they all suggest as to an induction date. Well, this time I am not in a hurry, I can wait. I have to now decide about the induction. All three of my labors have been without pain medication or epidurals. I am just not sure what I want to do this time, so much about this is uncharted territory. I just do not like needles and the thought of a needle in my back is somewhat disturbing, but then again much of this process has been disturbing.

The heart monitor arrived and the girls had a blast listening to him move all over the place. They had to chase him a little and then of course they had to listen to their heart as well. Who would have thought a heart monitor could be SO much fun? You can tell when Morgan is excited she skips. It is bittersweet to hear him. Abbi listened and was excited and Morgan asked questions. She does not understand why we aren't getting things for Michael. She asked me if anyone was going to buy him a Christmas present or have a shower. I have been honest with her and we have tried to prepare her, but how do you really prepare? I can't seem to prepare myself, let alone them. We will all manage to find Joy. Bill picked out a stocking for Michael and he has his own angel stocking holder and the stocking says Joy! It is so sweet.

I was talking with a friend of mine this afternoon and she is getting ready to do IVF in a few months. She is "advanced maternal age" and this will be her first. She was talking to me about her fears, fear of autism and the lifestyle changes of having a child and I completely understood.  I was trying to put myself in her shoes though and I couldn't. She told me they were having second thoughts about having children because autism was something they could not test for, she said obviously if there were any genetic anomalies they would terminate right away (& I understood this). I listened and again, I tried to understand and then I realized, I just couldn't comprehend where she was on many levels. I realized that while I was not judging or even disagreeing, I am just in a different place right now. It is faith over fear at this point for me. I think the reason I am contemplating this conversation in my head is because I feel a little role reversal. This put me in a different position, a position that I had an actual opinion about. Mainly because, things go wrong, life happens, genetically perfect children die, but without risks would mean not having children and for me, that would be sad. It occurs to me sometimes it is just difficult to not have opinions. So, with that, I will try to be more understanding of peoples opinions of us because maybe just maybe God is showing me that I should not assume all people have the same thought process I do. I want happiness for her and no regrets, so that is how I will pray.  I am not tortured by carrying Michael, someone else may be. Even Bill and I fear different things. I fear not seeing Michael's eyes and Bill fears seeing him alive only to lose him.

Mental Gymnastics

I just couldn't write yesterday. I tried, I started and then stopped. We went to our high risk maternal fetal specialist yesterday and they spent a lot of time with us. It is so much fun to see him on the ultrasound machine. He is quite the mover. He was twirling and dancing and then he tired himself out and had to take a nap. Very sweet. They looked at his kidneys and his kidneys look great. The cysts in his brain seem to have resolved on there own. There is no excess fluid on his brain, which is such a relief as many trisomy babies will develop fluid on the brain to the point of the head becoming so big, a normal delivery becomes very difficult. His heart however, sounds great, but is more enlarged which is probably (at least in part) the reason I have this excess fluid. He is not swallowing so he is not recycling much if at all. They also explained to me they are now concerned about something called mirror syndrome - which the mother actually will mirror issues the baby has such as fluid around the heart or in the lungs. I do not have that right now, they are just concerned. The biggest issue is that Michael has really quit growing. He explained to us that trisomy babies grow at the rate of a bell curve and we are now coming down the other side. Basically he has peaked in growth. He has dropped from the 57th percentile 6 weeks ago to the 27th percentile 3 weeks ago and now he is now in the 14th percentile. He is right around 2 pounds. I am concerned now that his heart could stop at anytime and a friend of mine is sending a heart monitor so we can listen to his heart. That may be one of the best Christmas presents ever. We are going to my regular OB on Wednesday to get her take on all of this and possibly schedule the induction. Please pray he can make it through Christmas. I would really like for the girls to not associate the Holidays with this if possible. If not we will find a way to make this positive, I am painfully aware this is out of my control. He is still busy making excess fluid inside of me and the doctors have decided to not drain the fluid for a few reasons. The first is because the fluid will likely just come right back and the second is that if they do not drain it, the extra fluid may cause me to go into labor on my own which they are in favor of right now because that would be easier too. The good news is that he is now head down. He could easily flip around because of the excess fluid and his size, so we are praying he stays head down as that will also be easier on both of us. That is our silver lining. Sometimes you have to look for it, but it is there...

Bill and I sat up last night and went through the birth plan together just to make sure we agree on everything. We are on the same page. What a mentally exhausting thing to plan for. It is not fun and yet it is good to go through it together as we both feel like we know what to expect a little more or at least know what we would like to expect. We still have to choose a mortuary - ugh! Bill even brought home an obituary for me to read. Those things are apparently not going to just happen on there own. I actually chose my doctor mainly because she delivers at this family birth center and I thought it would be such a joyous experience for my family. It is a really beautiful hospital, but not really the experience I was aiming for. If anyone reading this ever is going through something similar and wants a birth plan I will be happy to share it with you. I was given this birth plan by a labor and delivery nurse that went through something similar a few years ago and we changed a few things for us, but it was a great starting point.

I do not know why peoples opinions about how we should or should not handle this upset me, but right now they do. Some people think we should have terminated immediately and some people think we should deliver in the NICU and put him on life support and honestly, I am still not sure we have made all the right decisions. Who really knows if or what the the right decisions are or if there is a right decision that can be made. We still have more decisions to make potentially. When we got the diagnosis, I remember thinking oh please God, please make these decisions for us because it is just so hard. Well I know in my heart that we have made the right decisions but my head sometimes plays silly tricks on me - so I know this is probably normal, but I have to be honest.

I have been talking with another woman that I was put in touch with and she is pregnant with a baby boy that has full trisomy 18 and she is due the week before I am. I am in awe at her strength. It is pure and her little guy appears to have some different issues, his heart is on the opposite side of his chest, he is missing fingers and he has a cystic hygroma . He too is not growing and she is also developing the excess fluid because he is not swallowing, but she has chosen to give him every opportunity that you would give any other child such as surgery and ventilators. It may be a bit of a different journey than ours. I support her and I can appreciate her decisions as well because it is her child, her body and she knows she is doing what she feels is right.

This morning I got up around 5 a.m. to let the dogs out and crawled back in bed and Bill was holding me and my belly was right up against him and Michael was kicking so hard. It was like he was tyring to reach him. Usually he is not up that early, but this morning he was and he wedged his little feet right up into my ribs and it hurt a little, I enjoyed it. Funny when you know that is all you have and it is borrowed time, those moments become so precious. I love him, this is so hard because I love him.

On another note, I know how hard this is on you right now. I know you do not know what to say to me and I know you are afraid to upset me. I know all of these things. It is ok. It is ok to talk about Michael (I love to talk about him) it is ok to not talk about him. I have no expectations right now ~ on purpose. Understand I don't know what to say half of the time. Sadly I am not alone, sadly we are not the first people this has happened to and luckily life will go on and we are blessed and we are aware of how blessed we are.

Waiting for Michael

Here we are, creeping up on the holidays. My mother is here and we finally got the tree up (only breaking a few ornaments) and the girls are so happy. We did not put lights outside, but tonight after church my brother took them across the island to see lights and they are so excited which I am remaining focused on. If they are having fun, I am not "missing" the holidays. Santa has sent them special letters this year with magic reindeer food and to top it off, this is the very last week of school. This will be a Christmas without the hustle and bustle... nevermind, that is not even possible.

My nephew is 4 and he is the best dose of Christmas this year anyway you cut it. He recites his Christmas wish list like it is a poem and the serious facial expressions which I can not remotely convey in writing, are just some of what make him so entertaining. He will tell you stories while scrunching his brow and shaking his head up and down to convince you that Santa is bringing special things to just him and he obviously has a direct line that no one else has, he just does. You can feel the excitement and the magic. My sister in law took his elf hat away for bad behavior (um pee pee in his closet) and you can only imagine the disappointment. It is hard not to be entertained by these things.

Michael is very active right now and even with the extra room he has managed to create, I can tell exactly where he is most of the time. The biggest difference for me in this pregnancy, is that usually by this time, I am just ready to not be pregnant anymore and I am not in a hurry this time. The end is his time, so for me knowing his outcome may be perspective. If I did not know or if Michael was healthy, the nursery would be well under way, the toys and gadgets would be all picked out. It is disapointing and yet I can find peace in so much that seemed impossible before. I feel like I have a job right now to keep him comfortable and I can do that. I am still scared to deliver him. I need to find that same peace, I am working on that...

Thank you for all your very supportive comments, I look for all of them, they really make me happy : ) and I feel like I am not alone or losing my mind.

29 Weeks

Well, I made it another week. I know that a lot can change in any pregnancy in a week, make that a day, but for now, for today, we are ok. No protein in my urine, blood pressure was good (for me) and I am feeling a bit more optimistic about making it a bit further. We know the outcome, but my doctor pointed out with clarity today that without intervention (which is what we have chosen) any baby would not survive at this point, so if we want to give him the best possible chance we should continue as long as possible. I asked several questions today. The big question I had of course was monitoring him. My OB today told me that her ultrasound machine did not have the capability to monitor his issues so if we want to monitor him, we need to continue to go to the high risk doctors. Ok, well that essentially answered multiple questions that I think we had already somewhat figured out. The two offices are not communicating very well. She finally received the letter from the high risk doctor a week after she was supposed to. Why that is I do not know, but I think it is probably not personal to just me. When I told her the high risk office said they did not want to step on her feet, she actually rolled her eyes as if that was silly, and it did make me feel better. I asked her if she was concerned about the excess fluid and she said as long as I can breath, she is not too worried. I am ok with that right now because honestly, I enjoyed a visit without drama today. I also know draining that fluid does have its own risks.

We discussed how long I will carry him, she reminded me that if something happens to me I will deliver immediately, but otherwise I think we are aiming for 36 weeks. That is not that far away in the realm of things. Many babies with no obvious abnormalities on ultrasound die in the womb. Approximately 1 in 3000 pregnancies are trisomy 18 babies, but most of those are miscarried very early and thus never diagnosed. 1 in every 8000 live births are trisomy 18 births and 95% of all trisomy 18 babies are stillborn. 80% of trisomy 18 babies are female and of all pregnancies only 1% to 2% develop polyhydramnios. So we are really quite the medical anomaly I suppose. The high mortality rate is usually due to heart and kidney malformations, feeding difficulties, sepsis, and apnea.

My heart skipped a beat today

Today is frustrating, I am not going to lie I am feeling weak emotionally. I called the high risk doctor to schedule my next appointment since we did not end up inducing. I see them for several reasons but part of the reason is the ultrasounds because my regular OB has not done one since we found out about Michael and up until that point she had done one at every visit. I was told originally after Michael's diagnosis they would see me every three weeks. My OB doesn't have the same equipment which is another reason we go to the high risk doctor and today I found out the high risk doctors are releasing me. I assume they are doing this because they can not help Michael and she is capable of caring for me. I know that my OB just 2 months ago sent a lady that gave birth to a baby with trisomy 13 to these same doctors and that baby had more serious heart problems. They saw her on a regular basis and she had regular ultrasounds. So now, what they are telling me is that other than monitoring my blood pressure and listening to his heart, no one is looking at the fluid in my belly, his brain, his heart size or his kidneys. Most trisomy babies that make it to this point often die in utero towards the end. I would really like to meet Michael for a moment and now I feel like I have made the wrong choice for our care. I think somehow Michael has been forgotten. I am still convinced that comfort care is the right choice as I do not want him to suffer. Understand these are the only high risk doctors available in our area and they are located over an hour away so I actually do not have another option.

I am a believer that life is a series of choices and we determine the outcome of our life based on these choices. I have made some bad choices and some good choices, but regardless, the path I take, I have certainly on occasion made my road a bit more bumpy by my own accord. Well, initially I thought, well I did not choose this, but then who does right? That is obviously not the issue, BUT how I handle it is a choice and I have to remember that. I am not a victim, I am being given a choice as to how I will handle this everyday and more choices are to follow. I want to thank everyone for being so supportive and thoughtful and kind, I just can not thank you all enough. This has given me time to reflect and while I know I am going to have down moments and angry moments and moments that I do not understand, I feel some strange sense of confusion today. I need to work on that...

The Nutcracker

I cheated a little this weekend. Morgan's performance as a soldier in the Nutcracker was this weekend. She has been practicing for months, and was so excited and I was already feeling bad about not being there for her - I just could not miss it, so I broke out and I am so glad I did. The bedrest bandit and I paid for it a little the next day but completely worth it. I was careful, just sat and watched and left a little early to go back to the car so I wasn't on my feet. She was so cute and so excited. Bill brought her roses and my brother and sister in law sent her a beautiful floral arrangement and she was certainly the queen for the day. I did get to do her hair and makeup and it was just so exciting. The performance was so festive, it put us all in the Christmas spirit - a little... She actually told me she would have been very sad if I didn't go, so it made it that much better that I did.

Saturday morning Abbi had allstar soccer tryouts and she just found out this morning she made the team. Yay Abbi!!! I always feel guilty when I can't take them to practices, but I know it won't be that much longer in the realm of things.

Yesterday we woke up late (oops) and Bill brought all the Christmas decorations in but since I can't decorate they are still sitting there. At least they are inside now so the girls know we have good intentions. Bill took off in the afternoon to go up to his friends farm for a few hours for some much needed alone time I think. He was running both kids in circles all weekend, and we all need so much from him right now that I think just a few hours of quiet time was needed.

Nothing much today, just hanging out feeling Michael do flips and trying to convince him to turn. I am amazed at how active he has become considering I feel like I swallowed a big water baloon. He must be getting a little bigger...

Breath of Heaven

This has been one of my favorite Christmas songs for years so please do not think for a second I am comparing myself to Mary, but I always cry the first time I listen to that song - every year without exception. This year, it made me cry a little more.

Bill brought the girls home from school early today because Morgan is in the Nutcracker and has dress rehearsal tonight and Abbi is on an allstar soccer team and they have practice tonight. Anyways, they came home and Morgan and Abbi was so excited because a package came from www.stringofpearlsonline.org and I let them open it with me and it was this basket full of keepsakes for making memories with Michael. I received a care package from a friend almost immediately after we received our diagnosis. Her son was stillborn last year and we are pregnant and due around the same time. She sent me a bunch of reading materials for pretty much everyone in the family along with some similar suggestions. I know things will not keep him with us and I know everyday I am pregnant is one day less I have with him, so these things and these gestures mean everything to me. The emails I get from people, are so amazing and I sometimes do not respond but never because I do not appreciate them. I am so thankful for everyone and everything, but still I am on this journey.

Bill asked me what I wanted today - not in a bad way, in a what are we aiming for way, and I answered (funny enough) I want Michael healthy so we can keep him. He is so sweet, he said well, we don't get to keep him so keep thinking. I think a lot...

I formed you in the womb I knew you; Before you were born I sanctified you. Jeremiah 1:5

I get a fair amount of questions regarding our decision to continue the pregnancy with Michael, we are because we feel we are not God and He has to make that decision. While I appreciate everyones concerns, Michael is not suffering. I am uncomfortable, but my health is stable for today, Bill and I have made this decision...together, one breath and one day at a time.

The Birth Plan

So today, my focus has been on preparing a birth plan for Michael. It has to be very specific, what we want, what we don't want for him and for us. The doctors for example do not want to monitor the baby during delivery in case he dies and I think right now I would rather know how he is doing. We know he is breech, so it is going to be very difficult. We do not want them to take Michael for the normal baby things such as ointment in his eyes, but we do want simple measures taken to keep him comfortable such as suctioning. We do not want him to be revived. If he lives then we may want IV's for medication to keep him comfortable such as seizure medication or morphine. I do not want him kept in the morgue, I know at that point he will be gone, but I hate the thought of him being cold and alone, and I just know it will be too fresh for me to be completely rational. I know from being in the hospital already that I really want everyone to know what is going on. So I think I want some type of sign on the door. I certainly do not mind talking about Michael, but I also know that sometimes it is not as easy depending on my state of mind. I really hate feeling like I have shocked or saddened someone. I think (and I know I have said this before) the one thing I will certainly always know in my heart is how precious life is and not that I did not know it before, but I have to walk this walk, I do not want to scare some poor woman that has just found out she is pregnant. I am so blessed to have had three healthy normal and really carefree pregnancies with healthy children as a result. If we have anytime at all with Michael, it is likely to be brief, so I want to make the most of it for all of us.

I am getting very uncomfortable with the excess fluid. It is causing me to have regular contractions every evening and I just wonder if this will cause me to potentially go into labor on my own? Again, I feel guilt tonight. I feel guilty continuing and yet, I feel guilty not continuing. My daughter had a chorus performance tonight and I had to miss it because I am on bedrest - this is pretty complicated...

Roller Coaster

This has been a roller coaster ~ that really is the best way to describe it. I often feel like with three doctors, they have three opinions and they do not always communicate or agree. After not sleeping and worrying and the entire mess inside my head (which is not very pretty right now) I went in today to schedule my induction and... it's not going to happen right now. I am still on bed rest, my blood pressure remains high, but not out of control. Most importantly Michael's heart sounded great and my labs all came back normal. The doctors report from Pensacola last week, never made it to my other doctors office, so I got to tell her my take on the visit and results from last week. I had my sister in law with me and I really think I was clear. I told her one cyst was gone but there was a little more fluid around the other cyst. His kidney dilation did not look worse. His heart is of course a big concern right now, but even that is not "lethal yet", it is enlarged a little bit more and the hole is a little bit bigger. The biggest problem is that his growth has slowed considerably which is to be expected with these chromosomal issues and the excess fluid surrounding him. This doctor also told me that he will likely remain in a breech position because the chromosomal issues also will likely not signal him to get into the correct position for delivery.

I am often asked what our goal is and I can say with more clarity now that I still do not know.

Can we hold him?

The kids just left for school and Bill has a hearing in Pensacola which is about an hour away, so it is very quiet right now. We are expecting some kind of winter storm today, southern style, so no snow, but, cold, wet and windy, generally yuck. I just brought the dogs outside and since I can not walk them, they punish me by ignoring me and who could blame them, they are dogs and I am supposed to play with them and I am obviously NOT doing my job.

Well here is a little rant, I just called my doctors office and they hung up on me three times before they finally answered and then when I asked them if I should take my test directly to them or the hospital, the nurse acted like I was bothering her. Perhaps I am a little sensitive, but it has been a little frustrating with that office. I do not call them very often, I can actually count on one hand the number of times I have called. When I do call, I always have trouble getting them to call back. The first time I was in the hospital, I ended up with a $6000 hospital bill that could have been avoided, but no one would call us back. I called on a Wednesday at 8:00 am and left messages and called back multiple times and finally at 5:00 pm we had to go to the emergency room. This visit was because of the flu and I could not keep anything down. I ended up getting fluids via I.V., but a simple script probably would have prevented the whole dehydration thing. It may be my doctors staff, but it is hard to have this kind of diagnosis and well I MAY be a little hyper sensitive : ). I thought initially it was our circumstances and it would not matter who it was, but my husband really likes the high risk doctors and the staff. It is a completely different feeling when we go to these different doctors, I have to agree. The high risk office answers the phone, calls us back, the genetic counselor actually gave us her cell phone just in case, she set up hospice, just really above and beyond. The ultrasound tech gave us extra pictures and called him by name. Maybe it is because they deal with these outcomes on a regular basis. I also think my regular doctor and her office compare me to this incredible woman that just gave birth to a trisomy 13 baby about 2 months ago. She is absolutely an amazing woman. She had a very high profile pregnancy. Newspapers and a public blog (my husband has not even read mine) and I am glad she did, it is very helpful to me as well, but I am not her and although our outcome is the same, our circumstances are different. Polyhydramnious, bed rest, high blood pressure... I just have a few additional issues and feel like I failed a little by not carrying him as long. Michael is also breech and I am measuring about 5 weeks further along than I am because of the fluid and he is measuring 2 weeks behind.

My oldest daughter asked me what was I going to do after Michael was born. That is a very good question. Do I have to answer that one, or can I have a get out of jail free card for now? I don't know when I will be ready to return to reality, but I know enough to not have expectations. I know I do not want any medication to dull the pain. I know I need to deal with my grief somehow and I know I need to help my girls deal with their feelings as well. I know my husband is broken hearted and he will deal with it completely different than we will. I know my brother and sister in law, have to go through this process and I know our parents will too. It is raw on so many levels because it reminds each one of us that death is very much a part of life. It reminds us how precious our children are. It reminds us how important our siblings are. It reminds us of how grief can be debilitating.

So today, my husband ran my 24 hour urine test to the hospital, my sister in law took Morgan to dance, came back, took me to the hospital outpatient lab for blood work then, made us dinner, my husband came back to the hospital after picking Morgan up from dance and we went to get soup before going back home. Meanwhile, my sister in law has 2 small children and Bill runs a law practice so wow! I can't thank them enough, they are not even complaining. We stopped briefly at the pharmacy on the way home and I walked in with Morgan and a very nice lady asked me when I was due. Morgan looked up at me with a scared look upon her face. I answered her. I answered her and smiled AND I did not cry. I knew what Morgan was feeling though. That feeling of are we being honest? Of course we are. I am pregnant, it is a boy and I am due in a few months. Can you imagine being nice, asking a very pregnant woman an innocent question and she launches into a sad story or worse she cries? Ummm no, see I am getting better, I think.

Michael woke me up with some serious kicks last night and I tried to savor every moment and then as I laid there everything kind of hit me. After each one of my children were born I remember thinking how perfect they were. I remember knowing that absolute unconditional love. I also remember holding them and watching them fall asleep in my arms and knowing exactly how they moved inside me based on all the little stretches they made. Morgan asked me tonight if she could hold Michael when he is born. I had a moment. You know that kind of moment, when you try really hard to answer and not cry. I told her that it was going to be very difficult for Michael to live through labor. She asked again why God wants him back and Abbi told her God loves him so much that he needs him back and then Morgan cried. She then asked me again if she could hold him and I told her of course you can. I told her he will be very tiny. I then told her that he cold hear her and feel her when she touches my belly. She loves to talk to him and they both kiss my belly goodnight when they go to bed and goodbye in the morning when they go to school. I feel so big (and look pretty big too) so I keep reminding them how tiny he really is...