I have been very open an honest about my son's condition. In my eyes it makes him no less of a person, no less of a son then he otherwise would. But this world is so judgmental do they blame me? I wonder when I tell people my baby has a neural tube defect that they think I caused it. Maybe they think I was drinking, or using drugs, that maybe this was for the best that he won't grow up in my house. It breaks my heart. I didn't drink or smoke, I didn't do anything wrong. I don't think I am a horrible person, or mother. But I wonder how other people feel? I keep trying to say it doesn't matter, and I guess it doesn't, I just wonder. Whenever I explain that yes my son is due in February but unfortunately he won't make it I always get an apology and a look...what is that look?? I am not asking for sympathy, or anything else, I just want no one to ask questions once he is born. I want the time after he is in born for me to process as I need to without ever having to answer questions on a bad day.
I am carrying my angel, and I love him with all my heart. I don't know how much time I have left with him but I love every second I have left.
Sunday, October 28, 2012
Sunday, October 21, 2012
Trying to maintain a little normal
Our first trip to the pumpkin patch was last Wednesday, the 17th of October. We have never taken Marlee to one and neither my husband or I have been since we were kids. We went with Marlee's play group and she picked the biggest pumpkin she could carry. Randall and I picked out a small round one for Emery since it will be his only trip, and Marlee picked a tiny one for him as well. We took a couple of pictures while we were there but I want some more since none turned out quite how I wanted. Maybe we can go take our pumpkins to the park sometime this week. Also Emery has been kicking away lately, watching my belly jump as he is trying to get comfy :) He likes music and when I have my laptop on my lap. He also must like candy since I have a constant craving for it!! I also HAD to have a blue raspberry slushie today, which I normally hate, how funny. My grandma finished crocheting his blanket a few days ago, and also surprised me with a precious pair of booties that match. My mom is making him a hat and sweater, I love that he will be surrounded by love as he is with us. I am so thankful for the home maid clothes, how special!
I am still sad that every day is one day less I have with him but I am trying to focus on positives right now. I love my little bug :)
I am still sad that every day is one day less I have with him but I am trying to focus on positives right now. I love my little bug :)
Monday, October 8, 2012
Just another day
I am overwhelmed by how far I am behind in school!!! All my focus has been on my own personal life mostly with my son, and planning all of this out, now I suddenly realize I have homework for days! Thank goodness I don't have the kind of job I can get behind in or I'd never catch up! Also I pulled my daughter from preschool so now I have daily home school lessons for her since her school was so ridiculous and she was learning nothing.
I feel like I am stretched so thinly all the time I have left for my husband is spent in silence. At least he doesn't really want to talk, I think the idea of losing his son is pretty scary to him too. He tells me every day how lucky I am to have this bond, to feel him move everyday and know he is so close to me. He had never told me he wanted a son, he always said it didn't matter. But once we had found out we were having our son I think he was so excited, and now completely devastated. During our ultrasound over the weekend I promised myself I wouldn't cry. I wanted to just think of the positives, but once he started to cry I just started at the screen showing our son, didn't blink, and I just squeezed my husbands hand and focused on biting my lip. I made it through without crying, brought the dvd home, turned it on and broke down. He was so perfect, it is so hard to believe my baby boy will soon be an angel. I know you can see what is wrong with him physically, its obvious but to me it wouldn't ever matter, if only there were a way to have him make it, i'd do or give almost anything to make it happen.
On a happier note, he is moving lots more, its a mix of happy and sad with every kick though, knowing how much I'll be missing it. But my daughter got to feel her brother kick for the first time today, it was amazing. He always hides when you touch my stomach, so I didn't know if she would ever feel it. My husband has only felt him a few times, when he is very still. Silly baby boy, I love you.
I better stop writing on here though and get on doing my homework before I'm too tired to be awake though. Goodnight, thanks for reading.
I feel like I am stretched so thinly all the time I have left for my husband is spent in silence. At least he doesn't really want to talk, I think the idea of losing his son is pretty scary to him too. He tells me every day how lucky I am to have this bond, to feel him move everyday and know he is so close to me. He had never told me he wanted a son, he always said it didn't matter. But once we had found out we were having our son I think he was so excited, and now completely devastated. During our ultrasound over the weekend I promised myself I wouldn't cry. I wanted to just think of the positives, but once he started to cry I just started at the screen showing our son, didn't blink, and I just squeezed my husbands hand and focused on biting my lip. I made it through without crying, brought the dvd home, turned it on and broke down. He was so perfect, it is so hard to believe my baby boy will soon be an angel. I know you can see what is wrong with him physically, its obvious but to me it wouldn't ever matter, if only there were a way to have him make it, i'd do or give almost anything to make it happen.
On a happier note, he is moving lots more, its a mix of happy and sad with every kick though, knowing how much I'll be missing it. But my daughter got to feel her brother kick for the first time today, it was amazing. He always hides when you touch my stomach, so I didn't know if she would ever feel it. My husband has only felt him a few times, when he is very still. Silly baby boy, I love you.
I better stop writing on here though and get on doing my homework before I'm too tired to be awake though. Goodnight, thanks for reading.
Sunday, October 7, 2012
Something is wrong.
SO I know my blog has started out with me pouring out how I'm feeling without an actual story of what ended me up here. Its a longs story but I'll start from the beginning to catch everything up to speed.
Lets start in December 2011 since that's when I began riding this nightmarish roller coaster. December 7, 2012 I go to a clinic and have a pregnancy test, I knew deep down I was pregnant I just wanted to confirm with a doctor level type of test. The test came back positive, as I knew it would, they do an ultrasound to confirm(and to convince people not to abort, which I wouldn't do). The ultrasound just showed a tiny round dot(my uterus) and it looked empty. I was nervous but the tech said it was probably just too early and they scheduled me to come back on the 20th of that month. The next day I called my doctor and they told me to come in and take a pregnancy test. As I took the test I noticed a little blood, so when the nurse came back to my room I told her. They sent me straight to OB(which is just upstairs) and I waited to see a midwife. The midwife came in and told me don't worry, its just implantation bleeding but they will do an HCG test to put my mind at easy. I went to the lab and got blood drawn that day, and was told to come back Monday(since it was a Thursday). They called me Wednesday and told me everything more then doubled as it was supposed to so not to worry. I had my ultrasound scheduled for the 20th and my doctors appointment not until the 29th. At the ultrasound on the 20th my uterus had grown a lot and it certainly wasn't empty anymore but it didn't look like a baby. At this point I should have been 7 and a half weeks and they should have found a heartbeat, but didn't. She assured my my dates were just off and said since I had a doctors appointment just to follow up with them. December 24th when I woke up I was bleeding again. It hadn't happened since that first day and I had cramps, but it was never that much and I was so busy with packing to go to my parents house for Christmas I assumed it was stress related. It continued through the next few days and the day after Christmas I told my dad I was pregnant. My mom wasn't feeling well but things were just not feeling right, I took my dad aside and told him, I told him something felt weird and I was having problems. I asked him to tell my mom, since I thought she would be mad, he hugged me and we came home. The morning of the 27th I woke up with horrible cramps, and bleeding lots more then I had been. I asked my grandparents to take me to the hospital while my husband slept. At the hospital I had an ultrasound and a blood test. My HCG levels came back at 11,000 but the ultrasound was still not looking like a "baby". They told me it was a "threatened miscarriage" meaning I probably would have a miscarriage but still things could be fine, to follow up with my doctors in a few days. Finally it was my doctors appointment on the 29th. They did the standard first appointment check up and scheduled me with the doctor in the office to have an ultrasound. They also checked my HCG levels. Levels were up to 23000 so they weren't worried, just waiting on that ultrasound. January 4th was my ultrasound with the doctor. He walked in my room whistling, did the ultrasound, without letting me see the screen, stood up said you've had a miscarriage and walked out whistling. I sat there stunned!! WELL SORRY I INTERRUPTED YOUR DAY JERK. His nurse told me to follow up with an ultrasound in a week just to make sure. One week later I was back to see the jerk, and made him show me the screen. He showed my my uterus was not empty and told me there was no heartbeat, and at this point no way it would be a normal pregnancy. They said I could just wait for my body to get it out but there would be lots of bleeding due to the amount of tissue. I asked if I could have a D&C. I am a full time student, mom and wife and I work part time. I couldn't imagine just starting to gush blood unexpectedly. I wanted it scheduled on the 20th, since I couldn't wait too long but didn't want to spend my husbands birthday(Jan 16th) sad and sore. The 20th of January I had my D&C. I was sad but I was ok. I had my follow up appointment, to make sure I was healing correctly on the 27th. The doctor checked me and I looked fine, but he said something is wrong, get dressed and I'll be back to talk to you. I went to my appointment alone, my husband was at work but I figured, no big deal. Now I was alone in the waiting room feeling my heart pound out of my chest. What could have been wrong???? He comes in and tells me it was not a miscarriage, it was a molar pregnancy. He said I need repeat blood tests weekly until my HCG was 100 then bi weekly until it was under 5 then every month for a year. I was told not to get pregnant since if the "mole" came back I would need chemo. They needed to know it was a mole and not a pregnancy so they could get rid of it quickly without hurting the baby. End of March my blood was finally under 5. Went for my test in April, and May all was normal.
Here begins the story of Emery. Midway through June I started to feel pregnant. I was so scared the mole was back, I didn't want to go through chemo! I went in a few days earlier then normal for my blood test, just to know what was going on. The call comes in the next day. Your HCG is up to 22,000. I panic, the nurse says to jump from 1 to 22,000 in a month, its not a normal pregnancy, and schedules me for an ultrasound that Thursday June 21st. My mind is racing, no I was not on any birth control. I decided not to after the molar since it was rare and I didn't really fit any of the "normal" causes of it. Also because of the molar pregnancy I hadn't had any periods. Not since November 4th before i got pregnant with the molar. June 20th was my daughters 4th birthday, making for an extra long day with my worrying. I had told my family, so that everyone already knew what I was going in for on Thursday. My grandparents watched my daughter. My husband and I sat in the ultrasound room, watching the seconds tick by. The doctor walks in and does the ultrasound. He turns the screen and says, everything looks normal, your measuring 6 weeks 5 days, and right there is the heartbeat. I started to cry. I was actually pregnant!! I thought I could dance around the room! He tells me my Due date is February 9th 2013. I start calculating dates, got pregnant for my birthday, found out for my daughters and was due the day after my mother in laws. HOW COOL.
Saturday June 23 was my daughters birthday party. All our family came down and that evening I told everyone. I was 7 weeks pregnant and we were so happy things were normal this time. July 12th I had another ultrasound with the doctor. He found a cyst on my ovary during the first ultrasound that he wanted to monitor. We saw the little baby again, growing, heart still strong. After that appointment we decided to tell our daughter she was going to be a big sister. She was ecstatic!!! She has been asking for a brother or sister for months and it was so awesome to tell her we could give that to her. We had a follow up ultrasound 3 weeks later since my cyst had grown. This time we brought our daughter so she could see the little baby. He as so squirmy but we could see all his little bones, it melted me. This time my cyst had gone down a little, thank goodness, no surgery at 20 weeks pregnant for me!! He said I don't need to see him again until after the baby is born to check on the cyst and make sure the molar doesn't come back(since I'm at a higher risk getting pregnant within a year of my D&C) All my check ups were normal and everything was going great with my pregnancy. August 10th came and passed, I was scared for that day as it was when I would have been due. But I was ok, I knew I was fine now that I had another healthy baby growing inside me!! My next doctors appointment was September 5th. I planned it that way as it was my husband and my 3rd wedding anniversary and the midwife told me she would do an ultrasound to try and determine the sex. I went in for my appointment, everything checked out normal. She asked if I wanted to do the blood test for downs, trisomy, ect. I said why not, insurance pays for it, though I was extremely low risk for anything. I'm only 22 have a healthy kid, no family history, the test was no worry of mine. Then she brought us in to the ultrasound room. My little baby would not sit still, but we got a side view, she said I wont promise, but I'm pretty sure its a boy, but wait until the hospital ultrasound in a few weeks to tell everyone. I was thrilled, I saw it, I was sure it was a little boy, NO WAY they were telling me it was a girl. I told my close friends and my family of course. Days were dragging on as we waited for the 26th to get here so I could tell the world I was having a son.
But things never really go as planned right?? I get a message from my doctor on the night of the 12th. It said I am calling you about your lab work from last week, please call me back. I did, only 8 minutes later but never got to speak to her. All night I am scared thinking what is wrong with my baby, does he have down syndrome? My poor son. The next day I called again 3 times. Finally I talked to a sweet nurse, she said my midwife was out but they would have a doctor return my call. I get the call at work, this doctor I've never met says "your baby is at risk for having a brain or spinal defect". I almost fainted, what does that mean???? She told me the doctor who does the ultrasounds could see me at 6 pm for an ultrasound to see whats going on. I called my mom, they offered to come down and I said ok, feeling silly for having my family drive an hour to come to an ultrasound. My mother in law also came down. I spent the day at work nervous and ready to leave. My boss let me go home early, and when I did I started doing research online to see what could possibly be wrong. I saw spina bifida, which scared me, I didn't want my son to have such a hard life!! I also saw something called anencephaly, it seemed so scary. I looked at the ultrasound pics of each so that I could know what I was looking at.
As it comes to time for my appointment my brother, his girlfriend and my daughter go to my grandparents house while my mom, dad and mother in law and husband head to the doctors office. We are all in the room, watching the screen, silently. I see his spine, everything looks normal, so its not spina bifeda, maybe the test was wrong, it isn't 100 percent accurate. I try to break the silence by asking what he thinks it is, girl or boy? He says boy, but we will need to do an internal ultrasound since his head is as low as it can be. He gets his nurse and comes back in. As they are doing the ultrasound I see the screen, his head doesn't look right can it really be anencephaly?? We are all silent, I'm the only one who knows what he saw, I say you see something wrong don't you? He says yes, get dressed and I will be back. I put my pants on and he comes back in. I almost don't hear the words come out of his mouth. My mom asks what that means and I turn around and say, he doesn't have a top of his head or brain, he will die no matter what. Everyone starts crying except me and my husband. Then the doctor tells me there is no way this is related to the molar pregnancy. I asked can I end this pregnancy? I couldn't imagine carrying him to term how could I deal with all the questions, then what happens. He told me he didn't know that I would have to see the specialist. He couldn't even look at me and said I am so sorry. He was the same doctor who told me I had a miscarriage, then that it was a molar pregnancy, and now he had tears in his eyes. This cold hearted guy felt genuinely bad for me. Later that night my husband and I both broke down. I just wanted to be safe in my own house before I totally lost it.
My appointment with the specialist was scheduled for the following monday, the 17th of September. I was 19 weeks and 2 days pregnant, the office was amazing, the staff was so sweet, and the lady doing the ultrasound was amazing. The same people were in the room, both moms were crying, and my husband stood holding my hand the whole time. Over the weekend I had done a bunch of research. I decided I wanted to carry my baby, and I could handle all the questions. He was my son, my first son, and I could feel him move and kick, I couldn't let go of him. The only thing I couldn't find was about organ donation. But since I knew I wanted to keep him and every memory I could I asked the tech for pics of him. I loved watching the screen, seeing his tiny little body. Everything about him was perfect, all organs worked and all his body parts were there, except for the top of his poor little head. After the ultrasound the doctor explained that it happened between 21 and 28 days of gestation, before I even knew I was pregnant. He told me if I had had an accurate official ultrasound they could have diagnosed it at 12 weeks. I was so angry by the fact they were making me wait until 20 weeks when i could have known months before!!! The specialist explained that what happened is for whatever reason, the bones in his head never connected, and when they didnt the pressure from the fluid collapsed the unconnected bones causing his brain to not be able to develop. I also was told unfortunately I couldn't donate his organs. The government will not declare these babies brain dead, and when they do die the seizure will have ruined his organs. He told me chances of it happening again are low and when I want to get pregnant again I will need to take 4mg of folic acid and prenatal vitamins for at least 3 months before I try. He also said I can try again 6 months after I give birth so my body has time to recover.
We told my daughter the angels are going to take her brother once he is born. We also explained he is sick and unfortunately we can't take him home. She is devastated but is working her way through it.
This is pretty much the story thus far. I am now 22 weeks pregnant and anything could happen. He could die during the pregnancy, during delivery or any time after. We have no idea how anything will go we just have to be thankful for every day we have with him, and every moment he is alive and in our lives. He will always be in our hearts. I will update throughout our journey and record all of our memories of him. I do this for me, as I want to look back and have every memory possible, and know how far we have made it through our journey.
Lets start in December 2011 since that's when I began riding this nightmarish roller coaster. December 7, 2012 I go to a clinic and have a pregnancy test, I knew deep down I was pregnant I just wanted to confirm with a doctor level type of test. The test came back positive, as I knew it would, they do an ultrasound to confirm(and to convince people not to abort, which I wouldn't do). The ultrasound just showed a tiny round dot(my uterus) and it looked empty. I was nervous but the tech said it was probably just too early and they scheduled me to come back on the 20th of that month. The next day I called my doctor and they told me to come in and take a pregnancy test. As I took the test I noticed a little blood, so when the nurse came back to my room I told her. They sent me straight to OB(which is just upstairs) and I waited to see a midwife. The midwife came in and told me don't worry, its just implantation bleeding but they will do an HCG test to put my mind at easy. I went to the lab and got blood drawn that day, and was told to come back Monday(since it was a Thursday). They called me Wednesday and told me everything more then doubled as it was supposed to so not to worry. I had my ultrasound scheduled for the 20th and my doctors appointment not until the 29th. At the ultrasound on the 20th my uterus had grown a lot and it certainly wasn't empty anymore but it didn't look like a baby. At this point I should have been 7 and a half weeks and they should have found a heartbeat, but didn't. She assured my my dates were just off and said since I had a doctors appointment just to follow up with them. December 24th when I woke up I was bleeding again. It hadn't happened since that first day and I had cramps, but it was never that much and I was so busy with packing to go to my parents house for Christmas I assumed it was stress related. It continued through the next few days and the day after Christmas I told my dad I was pregnant. My mom wasn't feeling well but things were just not feeling right, I took my dad aside and told him, I told him something felt weird and I was having problems. I asked him to tell my mom, since I thought she would be mad, he hugged me and we came home. The morning of the 27th I woke up with horrible cramps, and bleeding lots more then I had been. I asked my grandparents to take me to the hospital while my husband slept. At the hospital I had an ultrasound and a blood test. My HCG levels came back at 11,000 but the ultrasound was still not looking like a "baby". They told me it was a "threatened miscarriage" meaning I probably would have a miscarriage but still things could be fine, to follow up with my doctors in a few days. Finally it was my doctors appointment on the 29th. They did the standard first appointment check up and scheduled me with the doctor in the office to have an ultrasound. They also checked my HCG levels. Levels were up to 23000 so they weren't worried, just waiting on that ultrasound. January 4th was my ultrasound with the doctor. He walked in my room whistling, did the ultrasound, without letting me see the screen, stood up said you've had a miscarriage and walked out whistling. I sat there stunned!! WELL SORRY I INTERRUPTED YOUR DAY JERK. His nurse told me to follow up with an ultrasound in a week just to make sure. One week later I was back to see the jerk, and made him show me the screen. He showed my my uterus was not empty and told me there was no heartbeat, and at this point no way it would be a normal pregnancy. They said I could just wait for my body to get it out but there would be lots of bleeding due to the amount of tissue. I asked if I could have a D&C. I am a full time student, mom and wife and I work part time. I couldn't imagine just starting to gush blood unexpectedly. I wanted it scheduled on the 20th, since I couldn't wait too long but didn't want to spend my husbands birthday(Jan 16th) sad and sore. The 20th of January I had my D&C. I was sad but I was ok. I had my follow up appointment, to make sure I was healing correctly on the 27th. The doctor checked me and I looked fine, but he said something is wrong, get dressed and I'll be back to talk to you. I went to my appointment alone, my husband was at work but I figured, no big deal. Now I was alone in the waiting room feeling my heart pound out of my chest. What could have been wrong???? He comes in and tells me it was not a miscarriage, it was a molar pregnancy. He said I need repeat blood tests weekly until my HCG was 100 then bi weekly until it was under 5 then every month for a year. I was told not to get pregnant since if the "mole" came back I would need chemo. They needed to know it was a mole and not a pregnancy so they could get rid of it quickly without hurting the baby. End of March my blood was finally under 5. Went for my test in April, and May all was normal.
Here begins the story of Emery. Midway through June I started to feel pregnant. I was so scared the mole was back, I didn't want to go through chemo! I went in a few days earlier then normal for my blood test, just to know what was going on. The call comes in the next day. Your HCG is up to 22,000. I panic, the nurse says to jump from 1 to 22,000 in a month, its not a normal pregnancy, and schedules me for an ultrasound that Thursday June 21st. My mind is racing, no I was not on any birth control. I decided not to after the molar since it was rare and I didn't really fit any of the "normal" causes of it. Also because of the molar pregnancy I hadn't had any periods. Not since November 4th before i got pregnant with the molar. June 20th was my daughters 4th birthday, making for an extra long day with my worrying. I had told my family, so that everyone already knew what I was going in for on Thursday. My grandparents watched my daughter. My husband and I sat in the ultrasound room, watching the seconds tick by. The doctor walks in and does the ultrasound. He turns the screen and says, everything looks normal, your measuring 6 weeks 5 days, and right there is the heartbeat. I started to cry. I was actually pregnant!! I thought I could dance around the room! He tells me my Due date is February 9th 2013. I start calculating dates, got pregnant for my birthday, found out for my daughters and was due the day after my mother in laws. HOW COOL.
Saturday June 23 was my daughters birthday party. All our family came down and that evening I told everyone. I was 7 weeks pregnant and we were so happy things were normal this time. July 12th I had another ultrasound with the doctor. He found a cyst on my ovary during the first ultrasound that he wanted to monitor. We saw the little baby again, growing, heart still strong. After that appointment we decided to tell our daughter she was going to be a big sister. She was ecstatic!!! She has been asking for a brother or sister for months and it was so awesome to tell her we could give that to her. We had a follow up ultrasound 3 weeks later since my cyst had grown. This time we brought our daughter so she could see the little baby. He as so squirmy but we could see all his little bones, it melted me. This time my cyst had gone down a little, thank goodness, no surgery at 20 weeks pregnant for me!! He said I don't need to see him again until after the baby is born to check on the cyst and make sure the molar doesn't come back(since I'm at a higher risk getting pregnant within a year of my D&C) All my check ups were normal and everything was going great with my pregnancy. August 10th came and passed, I was scared for that day as it was when I would have been due. But I was ok, I knew I was fine now that I had another healthy baby growing inside me!! My next doctors appointment was September 5th. I planned it that way as it was my husband and my 3rd wedding anniversary and the midwife told me she would do an ultrasound to try and determine the sex. I went in for my appointment, everything checked out normal. She asked if I wanted to do the blood test for downs, trisomy, ect. I said why not, insurance pays for it, though I was extremely low risk for anything. I'm only 22 have a healthy kid, no family history, the test was no worry of mine. Then she brought us in to the ultrasound room. My little baby would not sit still, but we got a side view, she said I wont promise, but I'm pretty sure its a boy, but wait until the hospital ultrasound in a few weeks to tell everyone. I was thrilled, I saw it, I was sure it was a little boy, NO WAY they were telling me it was a girl. I told my close friends and my family of course. Days were dragging on as we waited for the 26th to get here so I could tell the world I was having a son.
But things never really go as planned right?? I get a message from my doctor on the night of the 12th. It said I am calling you about your lab work from last week, please call me back. I did, only 8 minutes later but never got to speak to her. All night I am scared thinking what is wrong with my baby, does he have down syndrome? My poor son. The next day I called again 3 times. Finally I talked to a sweet nurse, she said my midwife was out but they would have a doctor return my call. I get the call at work, this doctor I've never met says "your baby is at risk for having a brain or spinal defect". I almost fainted, what does that mean???? She told me the doctor who does the ultrasounds could see me at 6 pm for an ultrasound to see whats going on. I called my mom, they offered to come down and I said ok, feeling silly for having my family drive an hour to come to an ultrasound. My mother in law also came down. I spent the day at work nervous and ready to leave. My boss let me go home early, and when I did I started doing research online to see what could possibly be wrong. I saw spina bifida, which scared me, I didn't want my son to have such a hard life!! I also saw something called anencephaly, it seemed so scary. I looked at the ultrasound pics of each so that I could know what I was looking at.
As it comes to time for my appointment my brother, his girlfriend and my daughter go to my grandparents house while my mom, dad and mother in law and husband head to the doctors office. We are all in the room, watching the screen, silently. I see his spine, everything looks normal, so its not spina bifeda, maybe the test was wrong, it isn't 100 percent accurate. I try to break the silence by asking what he thinks it is, girl or boy? He says boy, but we will need to do an internal ultrasound since his head is as low as it can be. He gets his nurse and comes back in. As they are doing the ultrasound I see the screen, his head doesn't look right can it really be anencephaly?? We are all silent, I'm the only one who knows what he saw, I say you see something wrong don't you? He says yes, get dressed and I will be back. I put my pants on and he comes back in. I almost don't hear the words come out of his mouth. My mom asks what that means and I turn around and say, he doesn't have a top of his head or brain, he will die no matter what. Everyone starts crying except me and my husband. Then the doctor tells me there is no way this is related to the molar pregnancy. I asked can I end this pregnancy? I couldn't imagine carrying him to term how could I deal with all the questions, then what happens. He told me he didn't know that I would have to see the specialist. He couldn't even look at me and said I am so sorry. He was the same doctor who told me I had a miscarriage, then that it was a molar pregnancy, and now he had tears in his eyes. This cold hearted guy felt genuinely bad for me. Later that night my husband and I both broke down. I just wanted to be safe in my own house before I totally lost it.
My appointment with the specialist was scheduled for the following monday, the 17th of September. I was 19 weeks and 2 days pregnant, the office was amazing, the staff was so sweet, and the lady doing the ultrasound was amazing. The same people were in the room, both moms were crying, and my husband stood holding my hand the whole time. Over the weekend I had done a bunch of research. I decided I wanted to carry my baby, and I could handle all the questions. He was my son, my first son, and I could feel him move and kick, I couldn't let go of him. The only thing I couldn't find was about organ donation. But since I knew I wanted to keep him and every memory I could I asked the tech for pics of him. I loved watching the screen, seeing his tiny little body. Everything about him was perfect, all organs worked and all his body parts were there, except for the top of his poor little head. After the ultrasound the doctor explained that it happened between 21 and 28 days of gestation, before I even knew I was pregnant. He told me if I had had an accurate official ultrasound they could have diagnosed it at 12 weeks. I was so angry by the fact they were making me wait until 20 weeks when i could have known months before!!! The specialist explained that what happened is for whatever reason, the bones in his head never connected, and when they didnt the pressure from the fluid collapsed the unconnected bones causing his brain to not be able to develop. I also was told unfortunately I couldn't donate his organs. The government will not declare these babies brain dead, and when they do die the seizure will have ruined his organs. He told me chances of it happening again are low and when I want to get pregnant again I will need to take 4mg of folic acid and prenatal vitamins for at least 3 months before I try. He also said I can try again 6 months after I give birth so my body has time to recover.
We told my daughter the angels are going to take her brother once he is born. We also explained he is sick and unfortunately we can't take him home. She is devastated but is working her way through it.
This is pretty much the story thus far. I am now 22 weeks pregnant and anything could happen. He could die during the pregnancy, during delivery or any time after. We have no idea how anything will go we just have to be thankful for every day we have with him, and every moment he is alive and in our lives. He will always be in our hearts. I will update throughout our journey and record all of our memories of him. I do this for me, as I want to look back and have every memory possible, and know how far we have made it through our journey.
Reality is setting in...
What does it mean to realize, the child your have created and carried inside you never gets to grow up in your home?
We had a 3d ultrasound of our beautiful son yesterday, I was a rock through the whole thing, just thankful to be seeing his adorable little face. As I looked around the room and watched various members of our families wiping tears from their eyes I realized the effect it was having on everyone. They are losing a grandson or a nephew, even a great grandson, without ever getting to hold him and play with him. As sad and hard as it is to know a member of your family is dying without ever having a chance at life, being a parent of the child has to be even harder. Everyone's heart breaks for him, and for us, but our heart just stays broken. How hard will it be to watch him take his last breath and have to let him go? I think they will have to pry him out of my arms. He is my soul, he is my son and I am not ready for him to be dying!! I wish I could have a chance to watch him grow up and learn. I want to watch his sister play with him and help take care of him, and watch my kids interact with each other.
As sad as I am about this situation it has brought me unreal amounts of strength! I never knew I could find a way to make it through day by day knowing my kid was fatally diagnosed. I cherish the moments I'll only ever have in pictures memories and videos. I pray my daughter has the chance to hold him, meet him and kiss his little cheeks. I do not know what to expect from this situation, it feels so out of control. All I can do it CHOOSE to be happy with the time I have with him. Treat him like my son, tell his story and find a way to fight for every minute of his brief lifetime. Years from now as I look back I want to remember that though I was sad, I stood strong and found the love in the moments. Whether I have more kids, or not he will always be my son, my first born son, and his soul will not be forgotten. I gave him a piece of my heart, I never want it back, I want to share it with him forever.
These are the moments I can never replay. I want to give him the best I can for the whole time he has, in and out of my belly. I love you little boy. Your daddy and sister love you too. So does all of our family's you are loved more then you will ever know, but I pray we show you the best we possibly can.
We had a 3d ultrasound of our beautiful son yesterday, I was a rock through the whole thing, just thankful to be seeing his adorable little face. As I looked around the room and watched various members of our families wiping tears from their eyes I realized the effect it was having on everyone. They are losing a grandson or a nephew, even a great grandson, without ever getting to hold him and play with him. As sad and hard as it is to know a member of your family is dying without ever having a chance at life, being a parent of the child has to be even harder. Everyone's heart breaks for him, and for us, but our heart just stays broken. How hard will it be to watch him take his last breath and have to let him go? I think they will have to pry him out of my arms. He is my soul, he is my son and I am not ready for him to be dying!! I wish I could have a chance to watch him grow up and learn. I want to watch his sister play with him and help take care of him, and watch my kids interact with each other.
As sad as I am about this situation it has brought me unreal amounts of strength! I never knew I could find a way to make it through day by day knowing my kid was fatally diagnosed. I cherish the moments I'll only ever have in pictures memories and videos. I pray my daughter has the chance to hold him, meet him and kiss his little cheeks. I do not know what to expect from this situation, it feels so out of control. All I can do it CHOOSE to be happy with the time I have with him. Treat him like my son, tell his story and find a way to fight for every minute of his brief lifetime. Years from now as I look back I want to remember that though I was sad, I stood strong and found the love in the moments. Whether I have more kids, or not he will always be my son, my first born son, and his soul will not be forgotten. I gave him a piece of my heart, I never want it back, I want to share it with him forever.
These are the moments I can never replay. I want to give him the best I can for the whole time he has, in and out of my belly. I love you little boy. Your daddy and sister love you too. So does all of our family's you are loved more then you will ever know, but I pray we show you the best we possibly can.
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