Wednesday, December 23, 2009
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...
Monday, December 21, 2009
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.
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.
Saturday, December 19, 2009
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.
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.
Friday, December 18, 2009
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...
Wednesday, December 16, 2009
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.
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.
Tuesday, December 15, 2009
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.
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.
Saturday, December 12, 2009
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.
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.
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