Cayenne77
06-09-2008, 03:26 PM
After almost five years of trying, a miscariage, my husband's health problems (kidney transplant and low sperm count) we thought children were probably not in the cards for us. So you could imagine our suprise when we found out we were pregnant. Who knew starting a new job closer to home and a trip to New York could change our lives
Everything was going good with a few minor problems (at thirteen weeks they couldn't find the baby) until Christmas Eve 2007 when my husbands transplanted kidney failed and he was put back on dialysis and the transplant list. He was finally released to come home the day before New Years Eve and was put on a schedule to do hemodialysis three times a week at the local center.
January 2007. No sooner did he start getting better; than I go to the OB for a normal pregnancy visit did she detect at 29 weeks the babies head was measuring large (I seem to remember the number 37) while looking at the monitors but I was never told what the exact number was. She told me that the head was measuring big and that I needed to see a specialist before the weekend (this was a Wednesday) and if I couldn't get in to the place to call her and she would get me in. So, of course we are freaked out and do like I am sure ALL of you did when you get a strange diagnoses LOOK on the INTERNET. Well, that just made things worse reading what all the possibilities could be and future problems.
Luckily, that following Friday we got in to the Neonatal Clinic and they did their own measurements and saw the mis-shaped (asmetrical) skull and asked me how I felt and how often did I notice him moving. I told the doctor that from the beginning I felt fine but that he REALLY didn't move to much or at least nothing that I noticed. She looked again at my fluid levels and I was at 5.3 cm of fluid with that low and little movement she sent me directly to the hospital-I couldn't even go home to pack! I went directly to the hospital (labor and delivery floor) where they hooked me to the monitors and I lived for the NEXT THREE WEEKS! My poor husband would go for his treatment and than drive the hour one way to come visit me in the hospital-I told him not to come so much but he said he knew how boring and lonely it was in the hospital and wanted to provide me company...awwe. During this time they weren't 100% sure of the diagonses (Crainostenosis, but were 90% sure that is what it was but because it was in the back of the head that and he was born yet they just didn't know). They couldn't do an amino (not enough fluid) and daily I would go down for a fetal profile and blood flow studies on the baby. The one doctor was certain I wouldn't make it to 34 weeks and three times we were told they would take him at 34 weeks, than 36 weeks and finally set on 37 weeks. I did get out for about 2.5 weeks prior to his birth but was told if my fluids went down I would be back in the hospital.
Finally, at 37 weeks (3/7/08), Jacob Cash, was born via-csection (she went latterly not to take a chance of his head getting stuck). To me/us he looked completely normal but I really didn't get to see him until nearly 12 hours later and after the peditrac plastic surgeon came to talk to us. He told us that Jake sagital bone had fused and he would need surgery and the best time to do it was between 3-6 months.
We went home and the surgery was scheduled for 6/17/08 with eye appointments, bailey's study, Neurology and Neurosurgeon appointments prior to. Than I found out due to not being at my job a year they don't offer FMLA until after a year employment. The only thing I qualified for while pregnant was the Pregnancy Discrimination ACT. IF I were to 'take off' to have my sons surgery prior to my one year anniversary I might not have one to come back to. Now, I know that sounds terrible (I had already been out for over 13 weeks with the complications of the pregnancy and birth) but I was lucky to find out prior to doing this and possibly losing my job. I know some of you are like screw them let them fire you, and YES I felt the same way BUT I carry the families insurance and due to my husband transplant and pre-existing condition he can't get insurance-we found about his kidneys right after we got married and had put him on my insurance prior to finding out So, I talked with the doctor's and explained our situation and they p/o his surgery until after my year anniversary at work. Surgery is NOW scheduled for 8/27 (it was moved twice due to doctor's being out of the country). He has a 3D CT Scan on 6/25.
Ok, from my understanding the surgery that they are going to do on Jake is going to take about 6-7 hours and they will remove the two bones on either side of his head right up from his cheeks where they say it's like 'pinched' looking. Than they will remove the 'cone' shape bone in the back of the skull and the strip along the sagital line that fused. Than hold everything back in place with screws and biodegradable sutures that will dissolve as new bone comes in. I ask myself how much of his own skull will be left when all this is said and done??? I see pictures of the surgery after pics and cry-honestly, to me I can't tell his head is any different (ok the OBIVOUS cone in the back is noticeable) not until he is put down next to a normal baby do I notice. Now I worry how is going to be able to sleep after surgery? The doctor's ask does he act like his head hurts? I don't know...you know sometimes he cries and whines and I thought maybe gas so I hold him tight and he will eventually fall asleep in my arms but as soon as I put him down the whining starts-there is no farting or burping and I tried the MYCLON so now I wonder..could it be his that maybe his head hurts? I just don't want to be oblivous to his pain. I know some said about the craino pressure-I don't know what that is and none of the doctor's have mentioned it.
Unfornately, with all this my husband's health has continued to decline and now he has congestive heart failure as well. He is too sick at times to even hold Jake without feeling like he can't breathe. Most nights he is up all night trying to find a comfortable position to sleep (can't lye down and sit up to long w/o choking). He is depressed all the time and has high anexity about everything going on with him. It's lonely, I won't lie to you, I feel like a single parent with Jake, most nights my husband comes home and is to tired to help out and maybe will eat something and try to fall asleep. We have friends and they are like 'come over' but really I feel bad/guilty leaving my husband for the night and enjoying myself when I know he can't. There too, I don't want to go to my friends house and see there 'normal baby' and healthy families-I don't want to burden them with my problems. Things are stressful, and I know god won't give you more than you can handle, but sometimes I feel when is enough enough? I must appologize I don't mean to burden you all with my problems...I am glad I found this site and I read your stories and hear I am not the ONLY one going thru this plus reading advice and being able to ask questions. I feel stupid sometimes with all the questions I ask the doctor's-they are great, but sometimes they talk WAY above your head.
Everything was going good with a few minor problems (at thirteen weeks they couldn't find the baby) until Christmas Eve 2007 when my husbands transplanted kidney failed and he was put back on dialysis and the transplant list. He was finally released to come home the day before New Years Eve and was put on a schedule to do hemodialysis three times a week at the local center.
January 2007. No sooner did he start getting better; than I go to the OB for a normal pregnancy visit did she detect at 29 weeks the babies head was measuring large (I seem to remember the number 37) while looking at the monitors but I was never told what the exact number was. She told me that the head was measuring big and that I needed to see a specialist before the weekend (this was a Wednesday) and if I couldn't get in to the place to call her and she would get me in. So, of course we are freaked out and do like I am sure ALL of you did when you get a strange diagnoses LOOK on the INTERNET. Well, that just made things worse reading what all the possibilities could be and future problems.
Luckily, that following Friday we got in to the Neonatal Clinic and they did their own measurements and saw the mis-shaped (asmetrical) skull and asked me how I felt and how often did I notice him moving. I told the doctor that from the beginning I felt fine but that he REALLY didn't move to much or at least nothing that I noticed. She looked again at my fluid levels and I was at 5.3 cm of fluid with that low and little movement she sent me directly to the hospital-I couldn't even go home to pack! I went directly to the hospital (labor and delivery floor) where they hooked me to the monitors and I lived for the NEXT THREE WEEKS! My poor husband would go for his treatment and than drive the hour one way to come visit me in the hospital-I told him not to come so much but he said he knew how boring and lonely it was in the hospital and wanted to provide me company...awwe. During this time they weren't 100% sure of the diagonses (Crainostenosis, but were 90% sure that is what it was but because it was in the back of the head that and he was born yet they just didn't know). They couldn't do an amino (not enough fluid) and daily I would go down for a fetal profile and blood flow studies on the baby. The one doctor was certain I wouldn't make it to 34 weeks and three times we were told they would take him at 34 weeks, than 36 weeks and finally set on 37 weeks. I did get out for about 2.5 weeks prior to his birth but was told if my fluids went down I would be back in the hospital.
Finally, at 37 weeks (3/7/08), Jacob Cash, was born via-csection (she went latterly not to take a chance of his head getting stuck). To me/us he looked completely normal but I really didn't get to see him until nearly 12 hours later and after the peditrac plastic surgeon came to talk to us. He told us that Jake sagital bone had fused and he would need surgery and the best time to do it was between 3-6 months.
We went home and the surgery was scheduled for 6/17/08 with eye appointments, bailey's study, Neurology and Neurosurgeon appointments prior to. Than I found out due to not being at my job a year they don't offer FMLA until after a year employment. The only thing I qualified for while pregnant was the Pregnancy Discrimination ACT. IF I were to 'take off' to have my sons surgery prior to my one year anniversary I might not have one to come back to. Now, I know that sounds terrible (I had already been out for over 13 weeks with the complications of the pregnancy and birth) but I was lucky to find out prior to doing this and possibly losing my job. I know some of you are like screw them let them fire you, and YES I felt the same way BUT I carry the families insurance and due to my husband transplant and pre-existing condition he can't get insurance-we found about his kidneys right after we got married and had put him on my insurance prior to finding out So, I talked with the doctor's and explained our situation and they p/o his surgery until after my year anniversary at work. Surgery is NOW scheduled for 8/27 (it was moved twice due to doctor's being out of the country). He has a 3D CT Scan on 6/25.
Ok, from my understanding the surgery that they are going to do on Jake is going to take about 6-7 hours and they will remove the two bones on either side of his head right up from his cheeks where they say it's like 'pinched' looking. Than they will remove the 'cone' shape bone in the back of the skull and the strip along the sagital line that fused. Than hold everything back in place with screws and biodegradable sutures that will dissolve as new bone comes in. I ask myself how much of his own skull will be left when all this is said and done??? I see pictures of the surgery after pics and cry-honestly, to me I can't tell his head is any different (ok the OBIVOUS cone in the back is noticeable) not until he is put down next to a normal baby do I notice. Now I worry how is going to be able to sleep after surgery? The doctor's ask does he act like his head hurts? I don't know...you know sometimes he cries and whines and I thought maybe gas so I hold him tight and he will eventually fall asleep in my arms but as soon as I put him down the whining starts-there is no farting or burping and I tried the MYCLON so now I wonder..could it be his that maybe his head hurts? I just don't want to be oblivous to his pain. I know some said about the craino pressure-I don't know what that is and none of the doctor's have mentioned it.
Unfornately, with all this my husband's health has continued to decline and now he has congestive heart failure as well. He is too sick at times to even hold Jake without feeling like he can't breathe. Most nights he is up all night trying to find a comfortable position to sleep (can't lye down and sit up to long w/o choking). He is depressed all the time and has high anexity about everything going on with him. It's lonely, I won't lie to you, I feel like a single parent with Jake, most nights my husband comes home and is to tired to help out and maybe will eat something and try to fall asleep. We have friends and they are like 'come over' but really I feel bad/guilty leaving my husband for the night and enjoying myself when I know he can't. There too, I don't want to go to my friends house and see there 'normal baby' and healthy families-I don't want to burden them with my problems. Things are stressful, and I know god won't give you more than you can handle, but sometimes I feel when is enough enough? I must appologize I don't mean to burden you all with my problems...I am glad I found this site and I read your stories and hear I am not the ONLY one going thru this plus reading advice and being able to ask questions. I feel stupid sometimes with all the questions I ask the doctor's-they are great, but sometimes they talk WAY above your head.