It is appropriately cold, dark and gloomy out. I spent the day alone, by myself in my house.
I feel for every other mother who has lost their baby. Their birthday and mother's day will always hurt. Every year. But I don't think anyone truly understands unless they've gone through it. People expect you to get over it and move on, but you don't. You just hope the pain is less and less.
Parents always say they're supposed to die before their children. That still holds true no matter what the circumstance. It's not fair and there is no silver lining. I'm supposed to have my son today and everyday. It will never be ok that he's not here.
I am very grateful for every second I did get to spend with Corben. I would do anything for just one more minute.
Miss you everyday, angel baby. You are forever imprinted in my heart
Sunday, May 10, 2009
Monday, March 16, 2009
4 weeks ago...
Today is officially Corben's one month birthday. I can't believe how fast time went by. It still seems surreal. Sometimes it seems like yesterday, sometimes it seems like years ago. I haven't accepted that it happened. I look at the pictures and don't even remember being there... or how that possibly happened to me.
I have everything from that day. His blankets, toys, some of his hair, footprints and handprints. I go through those and all his pictures every day.
I thought it would get easier with time, but it gets harder. I miss him so much. I constantly wonder what he would have looked like, sounded like and been like.
I feel very empty. My heart aches for him everyday.
I miss you and love you so much Corben...
I have everything from that day. His blankets, toys, some of his hair, footprints and handprints. I go through those and all his pictures every day.
I thought it would get easier with time, but it gets harder. I miss him so much. I constantly wonder what he would have looked like, sounded like and been like.
I feel very empty. My heart aches for him everyday.
I miss you and love you so much Corben...
Friday, March 6, 2009
Tuesday, February 24, 2009
Corben Hudson Blake
After 24 hours of labor, Corben was born sleeping on Monday, February 16, 2009. He was 3lbs, 10 ounces and 18 inches long. Much bigger than the doctors expected. He was beautiful. He didn't have a recessed chin or deformed toes like they said. His feet and toes were perfect, his face looked like a cherub. I was able to hold him for hours and he slept next to me overnight. He has been since cremated and is now home with me.
I miss him terribly. I wish he was able to take a breath, I could have heard him cry, or saw his eyes. I wish I could have held him longer. I wish I would have been able to save him.
Hospice had a photographer from Now I Lay Me Down To Sleep come and take professional photos. I'm hoping to receive them tomorrow. I will share on this site.
It's much harder than I could have possibly imagined. I will never be the same. He will forever be in my heart.
Corben Hudson Blake
Born Sleeping, 2/16/09
3lbs, 10 oz
Monday, February 2, 2009
February 2009
February 2nd
Went to my doctor's, Dr. Falkner, for a routine visit. She told me she thinks I'm developing toxemia/preeclampsia. I'd have to be monitored for the next 24-48 hours to make sure it didn't get worse. If it did, I'd have to deliver at Mercy where they wouldn't so much as monitor Corben. They're concern would be me, and again, they would just let him die. She then said - I don't know what you're hoping to gain out of this baby. He's never going to be normal, and he'd have seizures and be sick.
No support anywhere. Just making me feel like I'm crazy.
February 3rd
Found out my out-of-network is $5,000.00! I'm trying every angle to get more of this covered before my trip to Boston. Yikes. My insurance is not the best...
Went to my doctor's, Dr. Falkner, for a routine visit. She told me she thinks I'm developing toxemia/preeclampsia. I'd have to be monitored for the next 24-48 hours to make sure it didn't get worse. If it did, I'd have to deliver at Mercy where they wouldn't so much as monitor Corben. They're concern would be me, and again, they would just let him die. She then said - I don't know what you're hoping to gain out of this baby. He's never going to be normal, and he'd have seizures and be sick.
No support anywhere. Just making me feel like I'm crazy.
February 3rd
Found out my out-of-network is $5,000.00! I'm trying every angle to get more of this covered before my trip to Boston. Yikes. My insurance is not the best...
February 4th
I went to Quest in the morning for the rest of my toxemia/preeclampsia tests. They told me my doctor's office would call me soon with the results.
Carmela drove me up to Strong Hospital for my appointment with Dr. Pegoli, the pediatric surgeon. She's a rebel... we made great time!
I expressed my concerns with Dr. Pegoli and his nurse, Jennifer. I stressed that I wanted a plan in place, and didn't want to leave anything up to chance. They agreed. They said in all reality, the high risk OB/GYN would need to set all of this up for me. They would suggest a planned delivery, during the day, during the week so the best staff is available. A neonatologist would be present to intubate the baby immediately. I told them I was worried about intubating with his recessed chin. He said not to worry, they'd even keep him in me, using my placenta for his breathing until they trached him if need be. I felt a million times better. He said they do about 5 CDH cases a year.
They took me on a tour of the NICU. I wasn't able to meet with a neonatologist yet. It's still hard to see all the tiny babies hooked up to all those machines. But I felt better knowing he'd at least be getting care... better care than in Buffalo.
Afterwards, Carmela and I drove to the high risk OB/GYN office. There I had a quick ultrasound. I was able to see Corben's face in 3d. I know he has a recessed chin, but I still think he's adorable. :)
After that, I met with Dr. Glantz. I wanted to meet with Dr. Pressman who is the director and doctor suggested by Dr. Pegoli, but she was not there. This is when everything fell apart.
Dr. Glantz said based on the report from Philadelphia, he doesn't see the need to be aggressive in care for this baby. They wouldn't necessarily "plan" anything because of the grim prognosis and suspected outcome. I informed him that Dr. Pegoli - the surgeon - and I agreed to be aggressive and make decisions after the baby is born... but a plan should be in place. Dr. Glantz said he's not sure they'd necessarily agree and offer the care that I wanted to go forward. ?? I kept stressing what I wanted and that this baby would never survive a "wait and see" plan. He kept referring to the reports from Philadelphia and not seeing the point. Even thought the surgeon at Strong wants to care for my baby. ?!
So I finally get the surgeon and a hospital on board... only to have the OB/GYN turn me down.
Leaving there I was irate and angry. Same with my OB at home - who are these people to tell me whether or not my son should live or die? Their job is to take care of ME. It's up to the surgeon's and pediatrics to decide on the fate of my son. Not them. Once he's delivered, they have no say in his care. I don't understand. It's merely their opinion. Their focus should be my care only.
Plus, I never heard back from my doctor about the toxemia/preeclampsia. I even called. They said they'd call back. Never did. My blood pressure was sky high at the Rochester office though which is a bad sign. Wonder why!
Thanks Carmela for driving me and supporting me... again. I'm very stressed, angry and sad. I'm hoping I can pull this all together somehow.
My Cherub...
February 6th
I had a follow-up with my doctor today for the results of the toxemia/preeclampsia tests. Well... turns out they did the wrong screening on the 24 urine... and ran the wrong tests on my blood. Should I be surprised?? It's almost laughable at this point. So, they basically told me nothing. I guess the good news: no protein this time in my urine, my blood pressure is down and I lost 4 pounds. But they have no idea why or what caused it now. ARGH.
February 8th
I leave today for Boston. I'm a little nervous. I wish I wasn't going alone. I'm a super bad flier. Plus, I get airsick. Not to mention, I'm still not sure if I have any form of toxemia/preeclampsia. But, I'd do anything for this baby. And at the end of the day, it's just me and him anyways.
I start out early with a sonogram, then a fetal MRI, then a echocardiogram. After, I meet with a pediatric surgeon, then I meet with a neonatologist, then a genetic counselor. My first appointment is at 8:50, my last at 5. I better take notes! Wish me luck and hopefully, I won't die on the plane!
February 9th
I made it to Boston. The hotel was slightly seedy... but it was for one night so I sucked it up. The shuttle service to the hospital was brutal. The driver kept all the windows open the whole way. It was FREEZING.
They were running an hour and a half behind at the hospital. The staff was clearly concerned that I was alone. It was nice that they cared. I felt a little awkward being in a waiting room full of couples. As with every time I go for these tests, there was a student they wanted to follow me around all day.
It was a long day... I had a 40 minute sonogram. They sent me for a MRI which lasted over an hour. Then I was scheduled for an echocardiogram that lasted over an hour. By the time all that was finished, it was 4:45pm. No time for even a break or to eat.
I had a meeting at 4:45 with the surgeon, the nurse, the genetic counselor, the cardiologist and the student.. in a 6x6 room... literally. It was a little intimidating having all those people stare at you in this small room as they go through all the problems they found with your baby.
Unfortunately, they found the same things. The surgeon said his CDH is on the severe side. The cardiologist said the congenital heart defect was extremely severe as well. Along with that, they said because of his small chin, the airway is especially difficult and they don't know how well they'd be able to intubate him. Plus, his lungs are still underdeveloped. With the combination of those things, along with his other anomalies, they wouldn't recommend trying anything aggressive to save him either. They said the CDH or congenital heart defect alone are hurdles. The combination makes it almost impossible. They'd give him a 1% to maybe 2% chance of survival. And they don't think he'd ever be able to survive without a ventilator.
They said they would try and do what they could if that is what I wanted. But they didn't think it was in the best interest of the baby or myself. They said even with all their efforts, he would most likely not survive and they'd be just prolonging the inevitable if they were even able to get him on a ventilator in the first place.
So, maybe everyone else was right... and I am a little crazy for trying as hard as I've been. I certainly don't want to put my baby through pain for no reason, or for my benefit. I would never want him to suffer. But, there's still a lingering guilt for not doing anything at all either though.
I'm not really sure what to do. I guess if all these "experts" are telling me not to intervene, I should probably listen and take their advice.
I think it's my own issue trying to accept something that doesn't seem possible. And very unfair. I'm having a hard time understanding or grasping how it could be this bad. And no one has an explanation as to why.
February 14th
I'm not even sure what to say or how to write this latest post. I went to Strong Hospital in Rochester by myself yesterday to meet with the high risk OB, the neonatologist and the pediatric cardiologist. My first stop was the OB. I felt something was wrong late Thursday night (12th) and that morning (13th). I hadn't felt Corben moving like I usually do. I had a very bad bad feeling. When the doctor came in to see me, before I even let her talk I asked her to check for his heartbeat. She couldn't find it and took me for a sonogram in the next room. My fears were confirmed. Corben's heart was no longer beating. He died sometime Thursday night or Friday morning. I think I know when it happened. I was lying in bed Thursday night and he kicked slow but in rhythm 4 times in a row... I felt a little jump... and that was the last time I felt him.
I don't know how I made that drive back home from Rochester... I don't even remember it.
My decision was made for me. It doesn't make it any easier though. I am going tomorrow to Mercy hospital to be induced. I should deliver him sometime on Monday.
I secretly want to be pregnant forever. I'm dreading it being all over and no longer having him in my life. By far, this is the most difficult and hardest thing I'll ever have to go through. But I'm happy he won't have to suffer and grew his wings on his own...
January 2009
The basic decision from my doctor's office was that they were going to let him die at birth and only offer palliative care. No monitoring, no resuscitating, no intervention.
The more and more I thought about this, the more I knew it was something I just could not do. Regardless of how slim his chance of survival was, there was no way I was going to watch him die without doing everything possible to give him the chance to live.
Not only was my doctor's office completely unsupportive of this, so was Dr. Caty and Children's Hospital of Buffalo. The same hospital that refused to let me terminate... was refusing to try and save him.
When I was finally able to speak to Dr. Caty, he said they could "wait and see" when he was born and whomever is "on call" would make a decision on what to do if anything. Obviously, not the best option for a baby who would need immediate care and assistance to breathe.
Fortunately, I found Cherubs - an online group just for CDH babies. Through everyone there, I was able to learn so much more, get amazing suggestions, guidance, support and assistance to find care for myself and Corben.
I called Strong Hospital in Rochester and the Children's Hospital of Boston.
I made a trip up to Strong to meet with Dr. Pegoli, their pediatric surgeon. I didn't get the exact response I was looking for. It was more along the lines of what Dr. Caty said. However, he did promise to give an effort to save his life. I made an appointment for February to go back and talk with him further... perhaps push the issue and get more of a plan in place.
I also was able to speak with Children's Hospital of Boston. They also said they would not refuse care, and would definitely give it their best effort to save Corben. I made an appointment to fly down on February 9th.
It's unfortunate I am unable to get the support or care necessary in Buffalo... but I'm determined to do what I can to help my son. No matter what, I'm still his mother... and the only one he has fighting for his life.
The more and more I thought about this, the more I knew it was something I just could not do. Regardless of how slim his chance of survival was, there was no way I was going to watch him die without doing everything possible to give him the chance to live.
Not only was my doctor's office completely unsupportive of this, so was Dr. Caty and Children's Hospital of Buffalo. The same hospital that refused to let me terminate... was refusing to try and save him.
When I was finally able to speak to Dr. Caty, he said they could "wait and see" when he was born and whomever is "on call" would make a decision on what to do if anything. Obviously, not the best option for a baby who would need immediate care and assistance to breathe.
Fortunately, I found Cherubs - an online group just for CDH babies. Through everyone there, I was able to learn so much more, get amazing suggestions, guidance, support and assistance to find care for myself and Corben.
I called Strong Hospital in Rochester and the Children's Hospital of Boston.
I made a trip up to Strong to meet with Dr. Pegoli, their pediatric surgeon. I didn't get the exact response I was looking for. It was more along the lines of what Dr. Caty said. However, he did promise to give an effort to save his life. I made an appointment for February to go back and talk with him further... perhaps push the issue and get more of a plan in place.
I also was able to speak with Children's Hospital of Boston. They also said they would not refuse care, and would definitely give it their best effort to save Corben. I made an appointment to fly down on February 9th.
It's unfortunate I am unable to get the support or care necessary in Buffalo... but I'm determined to do what I can to help my son. No matter what, I'm still his mother... and the only one he has fighting for his life.
December 2008
December 3rd
Met with Dr. Caty at Children's Hospital. He is Chief Surgeon and would be performing the CDH surgery after Corben was born. He said that it all depends on the severity of the case. Like everyone else has told me, he won't know until the baby is born. He said 70% of CDH babies survive. It gets a little more difficult if they have to use ECMO - extracorporeal membranous oxygenation. ECMO is a heart and lung bypass system that does the job that the heart and lungs would be doing: putting oxygen in the bloodstream and pumping blood to the body.
Still, not being sure until after the baby was born. No new answers.
December 4th
The two of us went to tour the NICU at Buffalo Children's. This was hard to see. I couldn't imagine having my baby hooked up to all these machines. On the other hand, the staff was wonderful and encouraging and very hopeful.
We also met with Dr. Amankwah for another ultrasound. Nothing new was found. Just another chance to watch and see him move. :)
December 5th
I called my OB/GYN, Dr. Falkner, to see if I decided to terminate, if I could still do so. She said no. I missed the time frame in NY State. And Children's already refused so I would've had to find other means anyways.
December 10th
We decided to go back to Dr. Schmidt at Mercy to see if he still saw the same things as he did back in October. He agreed with Children's diagnosis, but said a fetal MRI would really determine what kind of situation I was really in. He suggested I contact Children's Hospital of Philadelphia and the experts there for their opinion.
December 19th
We made the trip to Philadelphia. Had a fetal MRI first thing in the morning, followed by a 2 hour ultrasound, followed by a 30 minute echocardiogram.
Afterwards, we met with Dr. Mark Johnson and 2 other "students" who were observing. Dr. Johnson said the prognosis was grim. He said the severe left congenital diaphragmatic hernia in combination with the congenital heart disease makes this a lethal condition. He suggested I go to Kansas for a late termination. If that wasn't possible, he recommended no monitoring of the baby and letting him die at birth.
So here I am... unable to legally terminate anywhere but a "facility" in Kansas, which all said and done would cost over $10,000.00. Or, I go full-term and watch my son die in my arms.
Those were the options given to us.
December 23rd
We met with Dr. Orie, Pediatric Cardiologist, for another echocardiogram. He received the report from CHOP (Children's of Philadelphia). He disagreed with the stance of "letting him die" at birth. His thought, if I had to go full-term, why not see what we have and make a decision at that point. Exactly my thoughts, but no one else seemed to agree. He placed a call with Dr. Johnson at CHOP who adamantly disagreed with doing anything "heroic" and insisted the only option was to make the baby comfortable, and let him die.
December 27th
After getting through the holidays... I now had this awful back pain. I didn't think to much of it. Then it got worse... and worse... and worse! By 9pm, I was shaking and trembling, the lower right side of my back was killing me, and I for certain had a fever. I got out a heat pad and tried to lie down. The pain wouldn't stop and I couldn't stop shaking. By 2am I was throwing up.
At 9am, after no sleep and the pain getting worse - I called my sister, Sheri. She drove me to the ER at Mercy Hospital.
Bladder Infection, Kidney Infection and Kidney Stones! I had all 3. They decided I needed to stay over night and I'd be able to go home the next day. Unfortunately, my fever wouldn't subside and neither would the pain. I was stuck there for 4 lonely nights!
Met with Dr. Caty at Children's Hospital. He is Chief Surgeon and would be performing the CDH surgery after Corben was born. He said that it all depends on the severity of the case. Like everyone else has told me, he won't know until the baby is born. He said 70% of CDH babies survive. It gets a little more difficult if they have to use ECMO - extracorporeal membranous oxygenation. ECMO is a heart and lung bypass system that does the job that the heart and lungs would be doing: putting oxygen in the bloodstream and pumping blood to the body.
Still, not being sure until after the baby was born. No new answers.
December 4th
The two of us went to tour the NICU at Buffalo Children's. This was hard to see. I couldn't imagine having my baby hooked up to all these machines. On the other hand, the staff was wonderful and encouraging and very hopeful.
We also met with Dr. Amankwah for another ultrasound. Nothing new was found. Just another chance to watch and see him move. :)
December 5th
I called my OB/GYN, Dr. Falkner, to see if I decided to terminate, if I could still do so. She said no. I missed the time frame in NY State. And Children's already refused so I would've had to find other means anyways.
December 10th
We decided to go back to Dr. Schmidt at Mercy to see if he still saw the same things as he did back in October. He agreed with Children's diagnosis, but said a fetal MRI would really determine what kind of situation I was really in. He suggested I contact Children's Hospital of Philadelphia and the experts there for their opinion.
December 19th
We made the trip to Philadelphia. Had a fetal MRI first thing in the morning, followed by a 2 hour ultrasound, followed by a 30 minute echocardiogram.
Afterwards, we met with Dr. Mark Johnson and 2 other "students" who were observing. Dr. Johnson said the prognosis was grim. He said the severe left congenital diaphragmatic hernia in combination with the congenital heart disease makes this a lethal condition. He suggested I go to Kansas for a late termination. If that wasn't possible, he recommended no monitoring of the baby and letting him die at birth.
So here I am... unable to legally terminate anywhere but a "facility" in Kansas, which all said and done would cost over $10,000.00. Or, I go full-term and watch my son die in my arms.
Those were the options given to us.
December 23rd
We met with Dr. Orie, Pediatric Cardiologist, for another echocardiogram. He received the report from CHOP (Children's of Philadelphia). He disagreed with the stance of "letting him die" at birth. His thought, if I had to go full-term, why not see what we have and make a decision at that point. Exactly my thoughts, but no one else seemed to agree. He placed a call with Dr. Johnson at CHOP who adamantly disagreed with doing anything "heroic" and insisted the only option was to make the baby comfortable, and let him die.
December 27th
After getting through the holidays... I now had this awful back pain. I didn't think to much of it. Then it got worse... and worse... and worse! By 9pm, I was shaking and trembling, the lower right side of my back was killing me, and I for certain had a fever. I got out a heat pad and tried to lie down. The pain wouldn't stop and I couldn't stop shaking. By 2am I was throwing up.
At 9am, after no sleep and the pain getting worse - I called my sister, Sheri. She drove me to the ER at Mercy Hospital.
Bladder Infection, Kidney Infection and Kidney Stones! I had all 3. They decided I needed to stay over night and I'd be able to go home the next day. Unfortunately, my fever wouldn't subside and neither would the pain. I was stuck there for 4 lonely nights!
Friday, January 30, 2009
November 2008
November 3rd
My doctor's office sent me to Dr. Laurel White, a periantologist, for a second opinion. Before I made a decision to terminate, I wanted to be 100% certain of these findings.
After a detailed ultrasound with a tech, Dr. White came in. She found more problems but agreed with Dr. Schmidt.
She said along with the recessed chin, the baby had chiari malformation, a neural tube defect, a deformed left hand, complex congenital cardiac malformation, dandy walker, spina bifida and the baby was not gender specific.
She also thought a chromosome anomaly was suspected. She encouraged me to terminate the pregnancy. She found my case "fascinating" and said she'd never seen anything like it. And to tell whoever does the autopsy to contact her with the results. Not exactly what I wanted to hear.
I asked her for an amnio, but she said there was no point. Any tests could be done after the baby was born.
November 4th
I went to Dr. Falkner's office to discuss what to do next. She said I'd have to go to Children's to terminate my pregnancy. They'd induce labor and I would deliver him there. She said they require their own ultrasound and testing before they agree to go through with this procedure. She scheduled me for an appointment 2 days later at Children's to begin the process.
November 6th
The day I dreaded. My appointment at Children's hospital. My friend, Carmela came with me for support.
I didn't even want to do another sonogram... it was painful at this point to see my baby moving and seeming normal... and knowing I'd have to end his life.
Dr. Amankwah came in while the tech was doing the ultrasound. They began going over all the problems Dr. White had found... but they weren't finding the same things. ?
They agreed with the abnormal hand, but said it was the right, not the left. They said the heart had a small VSD, and was not severe. They said the baby had a congenital diaphragmatic hernia which is pushing everything up and to the right. The brain and spine were found to be normal. No abnormalities found. Dr. Amankwah said this baby was not lethal. And his problems were fixable.
At this point, I wasn't sure if I was dreaming, it was a miracle or some cruel joke.
He suggested I do amnio on the spot to rule out chromosomal problems as Dr. Schmidt and Dr. White suspected. I immediately agreed.
Poor Carmela for helping through that amnio! Almost throwing up, passing out, squeezing her hand off... the amnio was done. I now had to wait 2 weeks for the results.
With the information Children's had, they were refusing to let me terminate unless this amnio showed a chromosomal problem. They did not find his condition lethal otherwise.
My doctor's office was shocked at this. But now we were all in a situation where we couldn't do anything but wait for those results.
I still spent an ungodly amount of hours on the Internet doing research trying to learn about all his problems and what it could possibly be, lead to or mean. I made several friends online who have helped me SO much and have given me more support and guidance than I could ask for. Thanks friends :)
I learned I was supposed to get another Rhogam shot after this amnio. I called my doctor's. They said woops. Of course!
November 13
I called Children's to find the in ital results of the Amnio. This is the FISH test. Apparently this tests about 95% of the chromosome abnormalities.
NORMAL. The results came back normal. Which means no trisomy as expected by Dr. Schmidt and Dr. White.
I still had to wait for the full results. But this was a pretty good indication that there was no chromosomal syndrome.
November 19
I called Children's for the results of the full amnio test. NORMAL. The baby had no chromosomal problems.
Now not knowing what to do next, I met with Sally Haplin, a genetic counselor at Children's. This was painful. She just stared at me and Carmela, made faces, and said "I don't know". She said the dysmorphologist and experts who looked at my sonograms have more questions than answers. No one could link it to any known syndrome. She said the baby could be fine, or severely not fine. She wasn't sure. But she suggested I find some other means of terminating since Children's wouldn't consider it at this point.
Now I was really confused. I had no idea what to do next. I was completely torn with whether I should continue this pregnancy or terminate. All these "experts" had conflicting reports. No one knew what to expect if he was born. The common response was "I don't know".
I called my doctor's office and asked them to send me somewhere else for another opinion so I could make a decision. The nurse told me there was no one else to see. I had seen all the WNY experts.
Wasn't good enough for me. I took it upon myself to call Strong Hospital in Rochester. They made an appointment for me the next week for an ultrasound and opinion.
November 24th
Carmela was kind enough to drive me to Strong Hospital. Yet another ultrasound.
A doctor came in after that was completed. She agreed with Children's diagnosis. The abnormal hand, the congenital diaphragmatic hernia (CDH), the VSD, abnormal toes and a recessed chin. They also could not link it to any known syndrome. The doctor said ... "i don't know". Again, it could go either way. He could be fine or not fine. They wouldn't know till after the baby was born.
Still no answers.
My doctor's office sent me to Dr. Laurel White, a periantologist, for a second opinion. Before I made a decision to terminate, I wanted to be 100% certain of these findings.
After a detailed ultrasound with a tech, Dr. White came in. She found more problems but agreed with Dr. Schmidt.
She said along with the recessed chin, the baby had chiari malformation, a neural tube defect, a deformed left hand, complex congenital cardiac malformation, dandy walker, spina bifida and the baby was not gender specific.
She also thought a chromosome anomaly was suspected. She encouraged me to terminate the pregnancy. She found my case "fascinating" and said she'd never seen anything like it. And to tell whoever does the autopsy to contact her with the results. Not exactly what I wanted to hear.
I asked her for an amnio, but she said there was no point. Any tests could be done after the baby was born.
November 4th
I went to Dr. Falkner's office to discuss what to do next. She said I'd have to go to Children's to terminate my pregnancy. They'd induce labor and I would deliver him there. She said they require their own ultrasound and testing before they agree to go through with this procedure. She scheduled me for an appointment 2 days later at Children's to begin the process.
November 6th
The day I dreaded. My appointment at Children's hospital. My friend, Carmela came with me for support.
I didn't even want to do another sonogram... it was painful at this point to see my baby moving and seeming normal... and knowing I'd have to end his life.
Dr. Amankwah came in while the tech was doing the ultrasound. They began going over all the problems Dr. White had found... but they weren't finding the same things. ?
They agreed with the abnormal hand, but said it was the right, not the left. They said the heart had a small VSD, and was not severe. They said the baby had a congenital diaphragmatic hernia which is pushing everything up and to the right. The brain and spine were found to be normal. No abnormalities found. Dr. Amankwah said this baby was not lethal. And his problems were fixable.
At this point, I wasn't sure if I was dreaming, it was a miracle or some cruel joke.
He suggested I do amnio on the spot to rule out chromosomal problems as Dr. Schmidt and Dr. White suspected. I immediately agreed.
Poor Carmela for helping through that amnio! Almost throwing up, passing out, squeezing her hand off... the amnio was done. I now had to wait 2 weeks for the results.
With the information Children's had, they were refusing to let me terminate unless this amnio showed a chromosomal problem. They did not find his condition lethal otherwise.
My doctor's office was shocked at this. But now we were all in a situation where we couldn't do anything but wait for those results.
I still spent an ungodly amount of hours on the Internet doing research trying to learn about all his problems and what it could possibly be, lead to or mean. I made several friends online who have helped me SO much and have given me more support and guidance than I could ask for. Thanks friends :)
I learned I was supposed to get another Rhogam shot after this amnio. I called my doctor's. They said woops. Of course!
November 13
I called Children's to find the in ital results of the Amnio. This is the FISH test. Apparently this tests about 95% of the chromosome abnormalities.
NORMAL. The results came back normal. Which means no trisomy as expected by Dr. Schmidt and Dr. White.
I still had to wait for the full results. But this was a pretty good indication that there was no chromosomal syndrome.
November 19
I called Children's for the results of the full amnio test. NORMAL. The baby had no chromosomal problems.
Now not knowing what to do next, I met with Sally Haplin, a genetic counselor at Children's. This was painful. She just stared at me and Carmela, made faces, and said "I don't know". She said the dysmorphologist and experts who looked at my sonograms have more questions than answers. No one could link it to any known syndrome. She said the baby could be fine, or severely not fine. She wasn't sure. But she suggested I find some other means of terminating since Children's wouldn't consider it at this point.
Now I was really confused. I had no idea what to do next. I was completely torn with whether I should continue this pregnancy or terminate. All these "experts" had conflicting reports. No one knew what to expect if he was born. The common response was "I don't know".
I called my doctor's office and asked them to send me somewhere else for another opinion so I could make a decision. The nurse told me there was no one else to see. I had seen all the WNY experts.
Wasn't good enough for me. I took it upon myself to call Strong Hospital in Rochester. They made an appointment for me the next week for an ultrasound and opinion.
November 24th
Carmela was kind enough to drive me to Strong Hospital. Yet another ultrasound.
A doctor came in after that was completed. She agreed with Children's diagnosis. The abnormal hand, the congenital diaphragmatic hernia (CDH), the VSD, abnormal toes and a recessed chin. They also could not link it to any known syndrome. The doctor said ... "i don't know". Again, it could go either way. He could be fine or not fine. They wouldn't know till after the baby was born.
Still no answers.
November 26th
Myself and Corben's dad had an appointment with Dr. Orie, a pediatric cardiologist. He did an echogram on the baby's heart. He said there was a CDH, but his expertise was the heart itself. There was a VSD, but it was very small. He felt it would heal itself and the baby would not need open heart surgery.
A small silver lining??
He suggested I meet with Dr. Caty, Chief Pediatric Surgeon. He would be the surgeon for the CDH and would know the odds of being able to repair this problem.
October 2008
October 27th
I went for a regular visit to Dr. Falkner. She informed me everything looked fine from the Down's test and everything was perfect.
October 29th
I went for my 18 week sonogram at the doctor's office. The tech wasn't able to get a lot of the things she needed because of the position the baby was in. She said Dr. Falkner would for certain schedule me to come back. But was able to tell me I was expecting a BOY!
October 30th
The nurse at Dr. Falkner's office called me on my way to work. She said the tech yesterday found the same problem Mercy did at my 12 week Down's sonogram.
I asked WHAT problem? She was shocked no one had contacted me or told me. They found the baby had a short chin at the 12 week sonogram and the tech found the same problem. Apparently, someone was supposed to inform me of this, but never did. On top of it, 3 days earlier, Dr. Falkner told me everything was fine.
They scheduled me for a followup sonogram at Mercy for the next day.
I spent the rest of that day on the Internet researching what this could possibly mean and finding tons of syndromes and other serious problems.
October 31st
After a night of no sleep, I went to Mercy with Corben's dad for a followup sonogram. This time meeting with Dr. Schmidt. After a thorough ultrasound... he told me there was more than a short chin. He said there were problems with his brain, he had a "banana shaped" cerebellum, an abnormal heart that was pushed to the right, abnormal hands, feet, arms and legs. He said his condition was lethal. Most likely a chromosome abnormality such as trisomy 13 or 18. He suggested I terminate as soon as possible.
This was the worst day of my life. I couldn't understand what I was hearing. I shook as I tried to take in what he was saying. I never knew things like this ever existed, let alone happen to me.
I've never felt emotional pain so deeply. At this same time, my sister was in labor with her fourth baby. She was going to the same hospital I was leaving to deliver her baby, while I was told to end the life of my first and only child.
Only people who have gone through this truly understand the pain you feel when you hear this news and have to consider ending your baby's life.
I went for a regular visit to Dr. Falkner. She informed me everything looked fine from the Down's test and everything was perfect.
October 29th
I went for my 18 week sonogram at the doctor's office. The tech wasn't able to get a lot of the things she needed because of the position the baby was in. She said Dr. Falkner would for certain schedule me to come back. But was able to tell me I was expecting a BOY!
October 30th
The nurse at Dr. Falkner's office called me on my way to work. She said the tech yesterday found the same problem Mercy did at my 12 week Down's sonogram.
I asked WHAT problem? She was shocked no one had contacted me or told me. They found the baby had a short chin at the 12 week sonogram and the tech found the same problem. Apparently, someone was supposed to inform me of this, but never did. On top of it, 3 days earlier, Dr. Falkner told me everything was fine.
They scheduled me for a followup sonogram at Mercy for the next day.
I spent the rest of that day on the Internet researching what this could possibly mean and finding tons of syndromes and other serious problems.
October 31st
After a night of no sleep, I went to Mercy with Corben's dad for a followup sonogram. This time meeting with Dr. Schmidt. After a thorough ultrasound... he told me there was more than a short chin. He said there were problems with his brain, he had a "banana shaped" cerebellum, an abnormal heart that was pushed to the right, abnormal hands, feet, arms and legs. He said his condition was lethal. Most likely a chromosome abnormality such as trisomy 13 or 18. He suggested I terminate as soon as possible.
This was the worst day of my life. I couldn't understand what I was hearing. I shook as I tried to take in what he was saying. I never knew things like this ever existed, let alone happen to me.
I've never felt emotional pain so deeply. At this same time, my sister was in labor with her fourth baby. She was going to the same hospital I was leaving to deliver her baby, while I was told to end the life of my first and only child.
Only people who have gone through this truly understand the pain you feel when you hear this news and have to consider ending your baby's life.
Monday, January 26, 2009
September 2008
September 22nd
I went to Mercy Hospital for a Down's Syndrome screening. Unfortunately, the doctor (Dr. Schmidt) wasn't in. I was only able to meet with the tech.
This was the first time it hit me that I was really pregnant and there was a baby in there! I could actually make out arms, legs, hands and feet.
The tech said everything looked good and either Dr. Schmidt or my doctor's office would call me if anything concerning came up.
I went to Mercy Hospital for a Down's Syndrome screening. Unfortunately, the doctor (Dr. Schmidt) wasn't in. I was only able to meet with the tech.
This was the first time it hit me that I was really pregnant and there was a baby in there! I could actually make out arms, legs, hands and feet.
The tech said everything looked good and either Dr. Schmidt or my doctor's office would call me if anything concerning came up.
August 2008
1 week after being told I would miscarry... I decided to go for the bloodwork anyways.
Guess what... STILL pregnant. Doctor's office called me and told me my HCGs went up.
They told me to come in for another sonogram. Found the heartbeat this time. It was just too early. I was still bleeding though.
Guess what... STILL pregnant. Doctor's office called me and told me my HCGs went up.
They told me to come in for another sonogram. Found the heartbeat this time. It was just too early. I was still bleeding though.
I then had to ASK for my Rhogam shot (O negative blood).
A week and a half later, I was still bleeding. I went to the ER twice with heavy bleeding. My doctor's office called me back for a sonogram. No one knows why I was bleeding, he was still there with that little heart
still beating away.
still beating away.July 2008
Late July, 2008
Found out I was unexpectedly pregnant. I was bleeding however, so I was certain it was a miscarriage. I made an appointment with OB/GYN Assoc. of WNY.
I was scheduled for a sonogram that day. They said there was no heartbeat, I would miscarry, gave me a hotline number and sent me home.
I asked if I should go for bloodwork, and they said there was no point... :(
They surprisingly didn't offer me a Rhogam shot. I am O negative blood type, like my mother. This requires a Rhogam shot to protect babies and future pregnancies.
Found out I was unexpectedly pregnant. I was bleeding however, so I was certain it was a miscarriage. I made an appointment with OB/GYN Assoc. of WNY.
I was scheduled for a sonogram that day. They said there was no heartbeat, I would miscarry, gave me a hotline number and sent me home.
I asked if I should go for bloodwork, and they said there was no point... :(
They surprisingly didn't offer me a Rhogam shot. I am O negative blood type, like my mother. This requires a Rhogam shot to protect babies and future pregnancies.
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